report - Autism Society of Newfoundland and Labrador

Transcription

REPORT:
Needs Assessment Survey
Autism Community, Newfoundland Labrador
ASNL Executive Committee:
Project Team
Submitted to:
John J. Barry, President
Suzanne Kenny, Vice-President
Joe McKenna, Treasurer
Dr. Fereidoon Shahidi, Secretary
Scott Crocker, Executive Director
Tess Hemeon, Advocacy Manager
Dr. Richard Audas
Devonne Ryan
Dr. Kristin Harris Walsh
Shauna Wells
Patrick Murphy
Autism Society Newfoundland
and Labrador
October 2015
Produced with support from:
MITACS
Table of
Contents
List of Abbreviations
1
List of Tables
2
List of Figures
4
Executive Summary
6
Over-Arching Themes
7
Gaps in Service
8
Recommendations10
Conclusion11
1.0 Introduction to Autism
Spectrum Disorder
32
3.1 Purpose
32
3.2 Qualitative Research
33
3.3 Quantitative Research
33
3.4 Conclusion 37
4.0 Respondents Receiving
Services38
4.1 Caregivers
38
4.2 Self-Advocates 80
5.0 Respondents Providing
Services94
5.1 Healthcare Sector
94
5.2 Education Sector
111
1.1 What Is Autism?
12
1.2 Interventions and Treatments 14
1.3 Autism in the Media 16
1.4 Autism Statistics
16
1.5 Autism Society, Newfoundland
Labrador (ASNL)
6.0 Recommendations and
Conclusions131
19
6.1 Constraints131
1.6 Other Autism Support Services in NL
20
1.7 Needs Assessment
21
6.2 Recommendations to Address
Issues of Need
132
6.3 Comparative Analysis
137
6.4 ASNL Moving Forward
138
2.0 Secondary Data Analysis
“Autism itself is not the enemy… the barriers
to development that are included with autism
are the enemy.”
12
3.0 Methods
22
5.3 Key Informants
123
6.5 Advocacy Strategies for ASNL
142
2.1 Trends in Recent ASD Research
22
6.6 Future Research
143
2.2 Best Practices
26
6.7 Conclusions 144
References145
– Frank Klein (Klein, 2008)
Needs Assessment of the Autism Spectrum Community
of Newfoundland and Labrador
List of
Abbreviations
ABA - Applied Behaviour Analysis Therapy
AD - Autistic Disorder
ADD - Attention Deficit Disorder
ADHD - Attention-Deficit/Hyperactivity Disorder
AMSE - Autism Mental Status Exam
ANN - Artificial Neural Networks
AS - Asperger Syndrome
ASD - Autism Spectrum Disorder
ASNL - Autism Society, Newfoundland Labrador
CASDA - The Canadian Autism Spectrum Disorders Alliance
CBT - Cognitive Behaviour Therapy
CDC - Center for Disease Control
CDD - Childhood Disintegrative Disorder
CLD - Culturally and Linguistically Diverse
CMS - Child Management Specialist
COST - Cooperation in Science and Technology
DAWBA - Development and Well-Being Assessment
DBD - Disruptive Behaviour Disorder
ESDM - Early Start Denver Model
FaHCSIA - Department of Families, Housing, Community Services and Indigenous Affairs
HF-ASD - High Functioning Autism Spectrum Disorder
IBI - Intensive Behavioural Intervention
ID - Intellectual Disabilities
IEP - Individualized Education Program
ISSP - Individualized Student Support Plan
NEDSAC - National Epidemiological Database for the Study of Autism in Canada
NL - Newfoundland and Labrador
OCD - Obsessive Compulsive Disorder
PARS - Paediatric Anxiety Rating Scale
PDD - Pervasive Developmental Disorder
PDD-NOS - Pervasive Developmental Disorder, Not Otherwise Specified
POT - Parent-Child Interaction Therapy
RDI - Relationship Development Intervention
RTT - Rhett’s Syndrome
SUD - Substance use Disorders
VIPP-AUDI - Positive Parenting Adaptive to Autism
Page 1
List of
Tables
TABLE 4-14: Mental and Physical Issues Compared to CASDA
61
TABLE 4-15: Caregiver Financial and Insurance Information
64
TABLE 4-16: Satisfaction Rating Percentages for Private Services
66
TABLE 4-17: Caregiver Financial and Insurance Information by Region
67
TABLE 4-18: Transition Planning
69
TABLE 3-1: Number of Qualitative Interviews
33
TABLE 4-19: ASNL Membership and Service Use
72
TABLE 3-2: Frequency and Percentage of Each Respondent
36
TABLE 4-20: Top 5 Barriers To Services, NL Needs Assessment and CASDA
87
TABLE 3-3: Frequency and Percentage of Each Respondent by Region
36
TABLE 5-1: Service Provider Demographic Information
96
TABLE 4-1: Caregiver Breakdown by Relationship to Individual with ASD
38
TABLE 5-2: Health Service Providers by Age/Region
98
TABLE 4-2: Demographic Characteristics of Caregivers by Age of Individual with ASD
40
TABLE 5-3: Course of Care As Reported by Service Providers
99
TABLE 4-3: Caregiver Rating of Everyday Skills and Behaviours
42
TABLE 5-4: Elements of Diagnosis Process, Interventions, and Co-Morbidities
100
TABLE 4-4: Caregivers by Age Group of Child with ASD and by Region
44
TABLE 5-5: IQ 70 Criterion
102
TABLE 4-5: Demographic Information Broken Down by Region
45
TABLE 5-6: Barriers to Services Identified by Service Providers In NL and CASDA
103
TABLE 4-6: Diagnosis, Referral, and Initial Assessment
47
TABLE 5-7: Transitional Care Provided by Service Providers
104
TABLE 4-7: Services Related to ASD
50
TABLE 5-8: Training Opportunities for Service Providers
108
TABLE 4-8: Barriers to Services Compared to CASDA
51
TABLE 5-9: ASNL Membership and Access to Programs for Service Providers
109
TABLE 4-9: Satisfaction with ASD Related Services
52
TABLE 5-10: Full-Time Versus Part-Time Schooling for Students with ASD
114
TABLE 4-10: Commute Time to Health Services Broken Down by Geographic Region
54
TABLE 5-11: Transition Planning Between Grade, Between Schools, and Into Adulthood 115
TABLE 4-11: Caregiver Responses to Child’s Kindergarten Experience
56
TABLE 5-12: Resources Available for Educators by Region
118
TABLE 4-12: Caregiver Responses to Child’s Grade School Experience
58
TABLE 5-13: Professional Development for Educators by Region
120
TABLE 4-13: Living Arrangement for Adults with ASD
60
TABLE 6-1: Recommendations by Priority, Target Age Group, and ASNL’s Role
140
Page 2
Page 3
List of
Figures
FIGURE 4-17: Reported Mental Health Co-Morbidities in Self-Advocates
85
FIGURE 4-18: Use of Services Reported by Self-Advocates
86
FIGURE 4-19: Reported Barriers to Accessing Services
86
FIGURE 4-20: Full-Time Versus Part-Time Schooling
87
FIGURE 4-21: Services Accessed Through School
88
FIGURE 4-1: Caregivers Broken Down by Region
44
FIGURE 4-22: Self-Advocates Awareness of IQ 70 Criterion
90
FIGURE 4-2: Region Breakdown in NL
55
FIGURE 4-23: Financial Burden of ASD Services
90
FIGURE 4-3: Community involvement- Adults with ASD
61
FIGURE 4-24: Self-Advocates and ASNL
91
FIGURE 4-4: Difficulty in Accessing Any Primary Healthcare Services as an Adult
62
FIGURE 5-1: Type of Respondent
94
FIGURE 4-5: Access and Satisfaction with ASNL by Region
73
FIGURE 5-2: Service Providers Broken Down by Age Group They Service
95
FIGURE 4-6: Caregivers Priority for The Role of ASNL
74
FIGURE 5-3: Service Providers Broken Down by Region
98
FIGURE 4-7: Priority of The Role of ASNL Broken Down by Age Group
74
FIGURE 5-4: Age Group with Greatest Access to Services
106
FIGURE 4-8: Priority of Role of ASNL by Geographic Region
75
FIGURE 5-5: Age Group with Most Challenges Accessing Services
106
FIGURE 4-9: Gender of Self-Advocates
80
FIGURE 5-6: Training Opportunities for Service Providers
108
FIGURE 4-10: Education of Self-Advocates
80
FIGURE 5-7: Role of Education Respondent in The School System
112
FIGURE 4-11: Housing Arrangement for Self-Advocates
81
FIGURE 5-8: Geographic Representation of Education Respondents
112
FIGURE 4-12: Means of Transportation for Self-Advocates
81
FIGURE 5-9: Breakdown of Education Respondents by Region
113
FIGURE 4-13: Employment Status of Self-Advocates
82
FIGURE 5-10: Transition Planning Between Grades, Schools, and Adulthood
116
FIGURE 4-14: Self-Advocates Broken Down by Region
83
FIGURE 6-1: Future Areas of Research
143
FIGURE 4-15: Referral for Diagnosis Given by Health Professional
84
FIGURE 4-16: Diagnosis Given by Health Professional
84
Page 4
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Executive
Summary
Through triangulation – the use of both qualitative and quantitative approaches – this
study has identified key concerns arising from the ASD community as well as a number of
gaps in services.
Over-Arching Themes
The Autism Spectrum Disorder (ASD) community in Newfoundland and Labrador (NL)
has spoken. Over the past twelve months, a team of researchers based at Memorial
University of Newfoundland has been collecting data from representative individuals
with ASD, their caregivers, health service providers, educators and key policy and
decision makers. The research team conducted over 40 interviews and collected more
than 640 usable survey responses from these demographics across the province, giving
unprecedented insight into the needs of the ASD community. In addition to this primary
research, a review of current trends in research and best practices in providing services
for the ASD community was conducted to help identify gaps in service in NL as compared
to other jurisdictions.
Background
ASD is a neurodevelopment disorder with a much higher prevalence amongst boys. The
Center for Disease Control (CDC) recently confirmed the incidence rate amongst 8-yearold children in the USA as 1 in 68; we use that same rate in Canada. The rate is rapidly
increasing! There is no known cause or cure for the condition and, as such, it manifests
differently across the lifespan, impacting the individual accordingly. The best evidence
suggests that early diagnosis and treatment result in better outcomes for those with
ASD and their caregivers. In NL, services are provided to the ASD community largely
through the health and education sectors. The Autism Society, Newfoundland Labrador
(ASNL), delivers programs and services in some communities locally and provides
outreach and advocacy in the wider community.
A review of current research and best practices for diagnosing, treating, and managing
ASD emphasizes a comprehensive and holistic approach. While there are novel
approaches to alleviate some of the symptoms of ASD, a cure is not likely in the
immediate future. Research in the UK, US, and Australia all point to early intervention,
integrated approaches and careful planning and case management as the key drivers of
good outcomes.
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A predominant theme that emerged from caregivers of individuals with ASD of all ages
is that there are significant challenges associated with providing care for a person with
ASD. These challenges tend to become increasingly difficult as children transition into
adulthood, when there is a dramatic drop in available services and supports. Many
caregivers described the emotional, financial and health strains put on them and their
families. They strongly communicated a sense of needing to constantly advocate within
the system to get access to the services their children required.
It was also evident that there was a lack of any clear treatment pathway or even a list of
programs and services to which their child was entitled. There were many complaints that
there was a lack of coordination between service providers, especially between health and
education.
Services available for individuals on the ASD spectrum are very limited. The situation is
particularly acute for preschoolers, for whom a more expedient diagnosis and treatment
plan would be of significant benefit; and also for adults with ASD, for whom there are
almost no services to access. During the school age years, more services are provided.
There was a strong belief that there are more services available in St. John’s metro area
and the Northeast Avalon as compared to other provincial jurisdictions, which is reflected
in the significant differences in access across the province. ASNL has filled some gaps in
service provision; however, it is not able to extend its reach to all corners of the province.
While the whole ASD community needs more support, the situation is particularly dire
outside of St. John’s, Clarenville, Grand Falls-Windsor and Corner Brook, those locations
where ASNL has regional offices.
A significant deficit in the care of individuals with ASD is a transition plan into adulthood,
which was noted by caregivers and service providers in both healthcare and education.
Individuals with ASD are extremely vulnerable and planning for transition requires great
care. We believe transition planning is poor, in part, because there is very little to which
these individuals can be transitioned. The highest functioning ASD individuals may be able
to enroll in postsecondary education or find employment. However, many other individuals
who could advance to further education or employment if given appropriate supports,
coaching and skill development are left to languish. Further compounding the situation,
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mental health issues were highly prevalent in youth and adults with ASD. Anxiety,
depression, ADHD, and OCD were common issues identified by study participants.
Unfortunately, mental health services and supports were perceived as deficient for
this population.
• Better integration of ASD treatment and other co-morbid mental health
conditions was highlighted as an important concern. Many individuals with
ASD also have co-morbid anxiety, depression and/or attention deficit disorder.
Caregivers believed treatment and care was needed to simultaneously address
all of these conditions.
There continues to be a lack of knowledge about ASD. The condition is still not well
understood in the wider community and those providing ASD services often do not
have sufficient training. Health providers and educators have stated that they need
more training while caregivers and self-advocates – adults with ASD who can and
do advocate for themselves – indicated that many critical service providers were not
adequately educated about ASD.
• There was poor transition planning for individuals as they left formal education
and the paediatric health system. Caregivers of adults noted the lack of any
clear pathway for continued services, in part due to a lack of services for adults
with ASD.
• Self-advocates acknowledged a lack of services for their co-morbid mental
health conditions. Some noted it was an initial concern regarding a mental
health issue that led to their ASD diagnosis. They did not believe they were
receiving treatment needed to manage their complex conditions.
Gaps in Service
We divide service gaps into those identified by the distinct groups within the
community. The top three key findings for each group were identified as follows:
Caregivers of Children:
• Wait times for referral and diagnosis were seen as a significant issue for
caregivers. During this time, parents are extremely anxious and eager to begin
treatment. The lengthy wait times for referral and diagnosis delay treatment,
which is particularly frustrating since evidence consistently points to early
intervention as a key determinant for a successful outcome.
• Caregivers reported concerns about lack of awareness of ASD in both educators
and healthcare service providers, which diminished quality of services and
lessened the effectiveness of treatment.
• There was concern that limited programming was available to preschool age
children and that programming diminished after grade three.
Caregivers of Adults:
• Significant challenges for caregivers of adults with ASD include: the lack of
opportunity for meaningful and engaging activities; coaching those who
are capable of finding employment opportunities; and finding employment
opportunities to provide some independence, increase their self-esteem and
achieve their potential. Many caregivers believed supportive employment with
some job coaching would help adults with ASD become more integrated into the
community.
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Self-Advocates:
• Self-advocates highlighted the need for supportive employment opportunities.
While few self-advocates were currently working, most indicated they would
welcome employment but were unsure how to manage their ASD in an interview
or in the workplace. Many spoke of the challenges in finding and keeping a job.
• Self-advocates expressed a strong desire to live independently but most lived
with caregivers. Many highlighted the challenges of finding and maintaining
suitable housing and indicated that, with some supports, they would be able to
live on their own.
Educators:
• Individuals with ASD generally found transitions in life stages to be difficult and
educators asserted that greater planning was needed to facilitate transitions
between grades, between schools and especially out of school. The research
revealed that plans for successful transitions to adulthood were currently
inadequate.
• Educators indicated a concern about lack of training in ASD and believed there
should be more professional development. Many noted there were in-service
opportunities for ASD professional development but these were not compulsory
and some of the best training opportunities fell outside normal in-service
training provided by the school board.
• Inclusion was lacking for individuals with ASD: Educators reported that some
children did not attend school full time, and others were sent home for health
and safety reasons.
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Healthcare Providers:
• Transition planning was a significant concern for healthcare providers. They
believed that as individuals with ASD moved from provider to provider there was
inadequate planning to facilitate a smooth transition, and that more resources
should be allocated to ensure movement between healthcare providers was as
seamless as possible. A lack of planning out of the paediatric healthcare system
was also noted.
• Healthcare providers identified delays in diagnoses as an impediment to
providing care. It is well documented that early interventions tend to be the
most successful; unnecessarily long waits – often more than a year to receive
diagnoses – reduce the effectiveness of subsequent interventions.
• Healthcare service providers recognized the need for greater access to services
for particular age groups. They described individuals ages 1-6 as enjoying the
best access to ASD, while adults 18 years and older were reported as having the
greatest difficulties accessing services.
Recommendations
7. Remove the IQ 70 criterion for service access. Many individuals are
denied services from which they would substantially benefit because
their IQ is above 70.
8. Assist newly diagnosed families and individuals with “navigating the
system” services. Ongoing support in identifying the services available
to families with a child with ASD is needed. However, early support,
outreach and advocacy were considered to be most important, as
families feel particularly vulnerable following first diagnosis.
9. Form an Employers’ Steering Committee to increase participation of
individuals with ASD in the labour force.
10.Develop a resource map of “ASD friendly services” across the province.
Families with ASD need to be able to identify services they can access
that will be suitable for their child. Accessing routine services, such as
recreation, dental care and others can be challenging for families with a
child with ASD and knowing where ASD friendly services can be accessed
in their community would be a vital resource.
Conclusion
Based on the above themes and gaps identified in ASD services, we submit the
following recommendations (please see section 6.0 for more details) as the top
priorities moving forward.
1. Identify lower need/higher functioning adults with ASD and work towards
skill development and job coaching with the view to job placements.
2. Develop mental health services for youth and adults with ASD and treat
ASD as part of a holistic set of co-morbid conditions that can include
anxiety, depression, OCD, oppositional defiance disorder, and ADD.
3. Develop better transition planning into, between, and out of schools
as well as between healthcare providers, with special attention paid to
providing care into adulthood.
4. Reduce wait times for assessment, diagnosis, and intervention therapies.
This comprehensive needs assessment of the ASD community has identified
numerous gaps in the services available for individuals, caregivers, educators and
healthcare providers. The needs are far reaching and cross the life span. Faster referral
and diagnosis is necessary and more services must be made available provincewide. Adults with ASD face particularly acute challenges, as there are limited services
available once they leave school and the paediatric healthcare system. While ASNL
is able to provide services in some communities, it is not able to extend itself into
smaller communities and remote parts of the province. The need for services persists
and the families, educators and healthcare providers in these communities need more
support.
Overall, there must be greater coordination between service providers and increased
awareness across the community.
5. Increase province-wide programming across the life span, focusing on
preschool children and adults with ASD as those with the greatest need.
6. Mandatory ASD in-service training for all school teaching, guidance
and administrative staff. Some academic staff in all schools should
have more advanced training and be available as a resource for their
colleagues (“train the trainer” approach).
Page 10
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1.0 Introduction to Autism
Spectrum Disorder
Symptoms – Three Core Areas
It is widely understood that ASD is comprised of three core symptom areas: social
issues, communication issues, and repetitive behaviours (Autism Speaks, 2014). The
severity of symptoms in each area varies widely between individuals on the spectrum,
meaning that each person requires their own unique, personalized diagnosis.
Social symptoms are most noticeable as children begin to age. For example, a lack
of expected social behaviours, such as decreased interest in communication at 8-10
months, may be an indication of ASD (Autism Speaks, 2014). As children enter social
environments, such as preschool and kindergarten, such symptoms become more
evident as the child may fail to engage in imitative behaviours and avoid group play.
1.1 What Is Autism?
Autism Spectrum Disorder (ASD) refers to a range of disorders that affect mental
functioning, thereby impacting an individual’s communication and social interaction
abilities. Autism is the umbrella diagnosis today, as per the Diagnostic and Statistical
Manual of Mental disorders, Fifth Edition. The diagnosis encompasses several different
disorders, including Autistic Disorder (AD), Asperger Syndrome (AS), Childhood
Disintegrative Disorder (CDD), Rhett’s Syndrome (RTT), and Pervasive Developmental
Disorder Not Otherwise Specified (PDD-NOS) (Autism Society of Canada, 2012). From
a medical perspective, the term “autism” refers to Autistic Disorder, the most severe
and most commonly diagnosed disorder on the spectrum (Autism Society of Canada,
2012). “Autism” is also the term most commonly used by the public to refer to any of
the disorders that fall on the spectrum.
The proper classification of ASD is disputed even amongst professionals. For
instance, it may be viewed as a developmental disability, a genetic disorder, or
a neurodevelopmental issue. However, it is generally understood that ASD is a
neurological disorder that affects brain function, primarily communicative and social
skills (National Institute of Neurological Disorders and Stroke, 2014). With current
advances in knowledge surrounding ASD, professionals are able to diagnose children
as early as two years of age. However, most children are not diagnosed until at least
four years old, which may have a profound impact on the child’s therapeutic progress.
While public awareness of ASD focuses around children, it is important to note it is
a disorder that will last throughout an individual’s life, bringing new challenges in
adulthood. Each individual diagnosed on the spectrum has a different combination
of symptoms, although most share issues in three core areas (Medical News Today,
2013).
Page 12
ASD children also have difficulty communicating with friends and family, both
verbally and non-verbally. Early signs will be evident with delayed babbling and use
of gestures. Some children may initially begin to babble at an early age; however, the
behaviour will quickly recede (Autism Speaks, 2014). ASD children with verbal skills
may use words improperly, use poorly constructed sentences, or interpret and/or
exhibit body language incorrectly.
The final core symptom of ASD is repetitive behaviour: rocking, arranging objects,
and repeating words while engaging in play. The individual may experience high
stress levels if they perceive that their behaviour has been disrupted, (Autism Speaks,
2014). These behaviours can also take the form of extreme obsessions with a certain
object; or they may manifest in intense knowledge about a subject such as music or
astronomy. Repetitive behaviours often persist into adulthood, and the individual may
have particular obsessions, for example, with the arrangement of items in their house
(Autism Speaks, 2014).
Co-morbidity with ASD
While the three core symptom areas are expected in individuals with ASD, they are not
necessarily the only ones that will be exhibited. ASD is often accompanied by other
mental disorders, including ADHD, Disruptive Behaviour Disorder (DBD), depression,
anxiety and mood disorders. The symptoms of these disorders alongside those
associated with ASD can result in complex needs for the affected individual. For
the healthcare professional, this means treatment must be tailored to the discrete
complement of symptoms presenting with each patient.
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Hyperactivity and other ADHD-associated symptoms are common in children with ASD.
Co-morbidity of these disorders can range up to 50% (Spenger et al 2013). Perhaps
unsurprisingly, children who exhibit symptoms of both disorders show an increased
severity of psychopathology, in particular aggression and delinquency. These children
are also more likely to suffer from depression and/or anxiety (Spenger et al 2013).
When an ASD child has also been diagnosed with ADHD, typical social impairments
associated with ASD may be much more profound in comparison to their non-ADHD
counterparts. However, data on this is still controversial and a clear relationship is yet to
be determined.
Similar to ADHD, Disruptive Behaviour Disorder (DBD) may affect the behaviour of
an ASD child. Co-morbidity occurs in approximately 25% of ASD children (Kaat &
Lecavalier, 2013). Not only is there a substantial increase in aggressive behaviour and
functional impairment, but DBD also has a profoundly negative impact on the child’s
independence and social support system. Parents, friends and teachers are often
stressed and unable to provide proper support to the child due to their consistently
aggressive and unruly behaviour, resulting in a decrease in the child’s overall health and
wellbeing (Kaat & Lecavalier, 2013).
Mood disorders such as depression and anxiety are strongly associated with ASD,
especially in those individuals with High Functioning ASD (HF-ASD). Such children are
aware of their social incompetency and therefore are more likely to exhibit depressive
symptoms (Strang et al 2012). Generally, there are higher rates of depression and
anxiety symptoms in school age children with ASD as opposed to without, with related
symptoms becoming elevated as ASD children enter adolescence (Strang et al, 2012).
Bipolar disorder is the most common with ASD children (Mazzon et al, 2013).
1.2 Interventions and Treatments
Early Intervention
Professionals are aware that early intervention is critical in order for a child with ASD to
achieve their greatest success. Studies show that early intervention results in significant
improvements in rates of development, IQ, language and social skills, as well as a
decrease in overall autistic symptoms. Such progress is more marked if intervention
begins in the preschool years, and is found to be more substantial when compared to
school-aged children receiving the same treatment. This may denote the preschool
years as a critical period for ASD intervention (Rogers, 1996). Unfortunately, while it is
possible to diagnose a child with ASD as early as two years old, many children are not
Page 14
identified until they are four or older. Once diagnosed, children usually receive therapy
for 15-25 hours per week, which may be increased depending upon the severity of the
child’s disorder and their resultant needs (Corsello, 2005). In this province, therapy
begins at 20 hours per week for preschool, decreases to 15 upon entry to kindergarten,
and further decreases to 10 hours weekly in Grades 1-3. ABA therapy in NL ceases at
the end of Grade 3.
Treatments
Three types of interventions are most beneficial to children with ASD: behavioural
intervention, developmental intervention, and cognitive-behavioural intervention.
Behavioural interventions are the most common form of treatment for ASD, as they
focus on the social behaviours of the child. This type of intervention enables children
to understand what is expected of them socially and helps them learn to use their
social skills and behaviours automatically in a social situation (Cleveland Clinic, 2014).
The therapist may break problem issues down into specific components, which are
then targeted using prompts and reinforcements until the child can maintain usage of
the new behaviour. Therapy must be continuously modified to suit the child’s needs
as they progress (Cleveland Clinic, 2014). A major example of this style of intervention
is Applied Behaviour Analysis (ABA) therapy, a type of operant conditioning. This
involves a professional directly observing the behaviours of a child and determining
which need to be altered (Autism Speaks, 2010). The professional then develops
a program surrounding the troubling behaviour(s) by focusing on three steps – an
antecedent, a behaviour, a consequence – and using a reward/punishment method as
the consequence (National Autistic Society, 2014).
The second type of intervention is developmental, targeting core deficits as opposed
to behaviours. Deficits can occur in areas such as affection, communication, and
logical thinking (National Autistic Society, 2014). Some children with ASD have missed
these developmental milestones that affect their ability to function properly; parents
have to adapt their communication style to help foster the development of these
critical milestones. For example, Relationship Development Intervention (RDI) is a
parent-led approach that aids in the flexibility of thought, emotional regulation, and
perspective taking. Unfortunately, research on the effectiveness of RDI is minimal and
requires much more investigation in order to develop further as an approach (National
Autistic Society, 2014).
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Cognitive-behavioural intervention is a psychotherapeutic approach that addresses
the relationship between thoughts, emotions, and behaviour. It primarily focuses
on emotional regulation and impulse control, which will ideally result in behavioural
improvements (Autism Speaks, 2010). This therapeutic approach is not restricted to
ASD, but is used broadly to treat numerous forms of mental illness. Scientific data is
supportive of the ability of this goal-oriented intervention strategy in changing brain
activity and improving overall function (National Alliance on Mental Health, 2012).
The Public Health Agency of Canada is in the process of developing a national
surveillance system for ASD, dubbed “NASS” (Government of Canada: Health Canada,
2015). In 2012, the initiative was launched with the intention for the surveillance
system to be running by 2016. The purpose of the system is to:
• Estimate how many Canadians are living with these disorders (prevalence)
and how many new cases are emerging (incidence) for ASDs and other
developmental disorders;
• Track the changes in incidence and prevalence over time;
• Identify potential risk factors;
1.3 Autism in the Media
Reported prevalence rates of ASD have increased rapidly over the past decade,
leading to greater interest in the disorder in both scientific research and popular
media. ASD is still not fully understood so misconceptions abound. Perhaps the
most infamous myth, long since debunked, was the purported link between certain
childhood vaccinations and the subsequent development of ASD. Even though
the initial study implying causation was thoroughly discredited in the scientific
community, there remains a small but vocal cohort of parents who refuse to inoculate
their children for dangerous diseases such as mumps, measles, and rubella (MMR).
They fear ingredients in these life-saving vaccinations (in particular, thimerosal and
mercury) may cause their child to develop ASD. The medical community continues to
assure the public that these components present no harm (Taylor et al, 2014).
1.4 Autism Statistics
National ASD Statistics
At present there are no Canadian statistics of ASD prevalence rates. Statistics
Canada does not collect this data in their health or their youth/child sections and so
associations in Canada rely on US statistics from the Center for Disease Control and
Prevention (CDC), which indicate that 1 in 68 American children will be diagnosed with
ASD. Amazingly, prevalence has increased by 120% since 2000, when 1 of 150 children
was diagnosed. It is also a gendered disorder, as boys are five times more likely than
girls to be placed on the spectrum. ASD is currently the most common neurological
disorder amongst children in Canada, with AD being the most common and CDD being
the least common (Autism Speaks Canada, 2014).
Page 16
• Describe the population of Canadians living with developmental disorders;
• Better understand the impact on Canadians living with developmental disorders,
their families and caregivers;
• Compare patterns of all the items above within Canada and internationally;
• Increase public awareness and understanding of ASDs and other developmental
disorders; and
• Help professionals develop programs and improve their practice and services to
Canadians living with ASDs and developmental disorders; and, guide policy development (Government of Canada, Health Canada, 2015).
Communication with the Public Health Agency of Canada indicates that NASS will
first track the demographic profile of ASD among children and youth – including key
characteristics, patterns and trends – by collecting and analyzing administrative data
from multiple sectors such as health, education and social services from participating
provinces and territories. NASS is a first step toward building a system to track all
developmental disorders for a broader range of populations. NL has signed on and has
agreed to participate in this project. The preliminary report is expected in 2016.
In a press release dated April 2015, Federal Health Minister Rona Ambrose outlined
further assistance that the federal government has provided to those with ASD as
well as their support networks. She referenced the developing surveillance system
and pointed to a recently established Chair in Autism Spectrum Disorder Treatment
and Care Research, which is currently held by Dr. Jonathan Weiss at York University
in Toronto. His research “focuses on the prevention and treatment of mental health
problems in people with autism spectrum disorders (ASD) and/or intellectual
disabilities (ID) across the lifespan,” paying particular attention to the experiences
those with ASD and ID have with emergency, psychiatric and healthcare systems, in
addition to their family caregiver experiences (ASD Mental Health, 2015). The many
research outputs that have been produced out of this initiative vary widely to include
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studies on various mental health issues, family supports and treatment possibilities
for those affected by ASD (York University, 2015).
Aside from Government of Canada initiatives, there are a number of associations that
support Canadians who have ASD and their families: Autism Canada (http://www.
autismcanada.org ); Autism Speaks Canada (http://www.autismspeaks.ca ); Geneva
Centre for Autism (http://www.autism.net); and the Centre of Knowledge on Healthy
Child Development, for example (http://www.knowledge.offordcentre.com).
Provincial ASD Statistics
There are currently no regularly collected statistics on ASD in the province of NL, although
two key studies have been completed to establish prevalence rates. In 2008, Dr. Hélène
Ouellette-Kunz of Queens University spearheaded the National Epidemiological Database
for the Study of Autism in Canada (NEDSAC), which studied ASD rates in various provinces,
including NL. 2008 was their most recent year of data gathering and the funding has since
ceased for that project. However, their study did yield data from the years 2003-2008
(Queens University, 2015). Their results indicate that between those years, 700 children with
ASD were identified in at least one year. In 2008, ASD prevalence rates were identified as
follows: 1 in 77 (39% increase) of 2-4 year olds; 1 in 93 (94% increase) of 5-9 year olds; and
1 in 136 (86% increase) of 10-14 year olds. Overall, they found that the prevalence rates for
children between 2–14 years old increased from 45.6 per 10,000 to 83.0 per 10,000 in 2008
(Ouellette-Junz et al).
The rise in findings of ASD in children identified by NESDAC corroborates a study
reporting on the incidence and one-year cohort prevalence of children living on the
Avalon Peninsula of NL. Pelley et al’s (2015) results indicate that from 2006 to 2010,
272 children (under 15 years old) were diagnosed with ASD, with an average of 54 new
cases per year. From 2006-2010, the incidence of new diagnoses increased from 10.1
to 16.7 children per 10,000. At the end of 2013, the prevalence among children born in
2006 was 1 case of ASD per 46 individuals or 215.77 cases per 10,000. The researchers
make the following interpretation and recommendation:
We found higher rates of ASD than had previously been reported for this population.
The prevalence of this region is also high when compared to other populations studied
globally. The high rate of diagnosis supports the need for a provincial ASD registry and
comprehensive services for this patient population.
The Canadian Autism Spectrum Disorders Alliance (CASDA) completed a National
Needs Assessment Survey in 2014, with responses from caregivers regarding ASD
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prevalence and service gaps. In NL, caregiver responses indicated that 75% of
individuals with ASD were male, and the average age was 12.8 years (SD = 9.1 years)
and ranged from 3 to 38 years.
• Most individuals with ASD lived at home with a caregiver (94%);
• All caregivers of preschoolers and school age children reported their child was
living at home with family, and 78% of adults lived at home with family; and
• All individuals with ASD were born in Canada.
While these provincial studies provide a useful snapshot into autism prevalence in
NL, Clair and Audas’ review of the literature in their article, “Prevalence of Five Mental
Health Conditions: A Comparison of Methods” underscores the lack of comprehensive
study of autism in Canada. Clearly, the need for both provincial and national
surveillance and data gathering is critical in order to provide consistency in terms of
diagnosis, prevalence rates and treatment options for those living with ASD.
1.5 Autism Society, Newfoundland Labrador (ASNL)
ASNL was founded in 1984 with the mandate to provide support, outreach and
advocacy around ASD and those affected by it throughout the province of NL.
ASNL’s Mission:
ASNL is a provincial charitable organization dedicated to promoting the
development of individual, lifelong, and community-based supports and
services for people with autism spectrum disorder (ASD), their families,
and caregivers.
ASNL’s Vision:
A province where people with ASD and their families are respected, and
where they receive services/supports based on individualized differences,
needs and preferences.
ASNL operates four regional offices and volunteer chapters across the island, and
provides further assistance by offering Parent Support Groups across the province. In
addition to its outreach, ASNL is active with advocacy on behalf of those with ASD, and
offers a variety of programs for individuals with ASD (adults and children) and their
family members at two of four regional offices. These programs include Transitions
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(employment readiness), Social Thinking, Social Club, Sibling Workshops, Adult Leisure,
and Therapeutic Recreation. In short, they provide numerous forms of invaluable
support, outreach and advocacy initiatives for those with ASD, their support networks
and for the general public (Autism Society, Newfoundland Labrador, 2015).
1.6 Other Autism Support Services in NL
The provincial government of NL also provides support for those living with ASD and
their families/caregivers. The Department of Health and Community Services offers
an Intervention Services Program that features a Direct Home Services Program and
a Community Behavioural Services Program. The two complementary programs are
designed to assist children from the age of 18 months through their school years and
beyond. Child Management Specialists throughout the Regional Health Authorities
provide the Direct Home Services Program therapy, consisting mostly of intensive,
one-on-one ABA therapy from 18 months old through to their entry into school and to
the end of Grade 3, including a program specifically targeted for a smooth transition to
kindergarten.
When children begin school, they are eligible for the Community Behavioural Services
Program, provided by Behavioural Management Specialists to individuals with an IQ
of 70 or lower who exhibit behavioural issues (Autism Society Canada, Government
of NL, 2015). The Department of Education and Early Childhood Development,
Government of NL, may provide modified or alternative curriculum for students
diagnosed with ASD, with the caveat that such modifications may affect a student’s
secondary school graduation and therefore their future postsecondary options. Thus,
a student meeting the criteria for a neurodevelopmental disorder such as ASD will be
individually assessed and their progress monitored throughout their K-12 schooling
(Government of NL, Early Childhood Development and Education, 2015).
The provincial government provides further support in the form of Respite Care, to
supplement the support provided by family, in the form of a non-trained caregiver,
as well as a Special Child Welfare Allowance provided to some families (based on
financial need) with children whose conditions place an extra financial burden on the
family.
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1.7 Needs Assessment
Given the complex and varied needs of the ASD community in NL and the increasing
rates of diagnosed prevalence, a research team was assembled to undertake an
assessment of the community to determine where services and supports are effective
and where they are lacking.
The ASD community is broadly defined. First and foremost, we sought the views of
individuals and families coping with ASD. However, we believe the community is much
wider than this and we canvassed the input of others in the ASD community, including
those who would be classified as healthcare service providers such as doctors,
occupational therapists, speech language pathologists and social workers. We also
obtained the views of those in education; they are particularly important as they work
with children with ASD on a daily basis. Finally, we involved key policy and decision
makers as critical informants for the ASD community in the province.
We obtained our results using a mixed methods approach. All stakeholder groups were
given the opportunity to participate in interviews to provide their experiences and
history with ASD. These interviews were used as the basis for four separate surveys
that were developed for adults with ASD (self-advocates), caregivers, healthcare
professionals and educators. The work of the research team was widely publicized by
ASNL and members of the ASD community were given both the opportunity to preregister to participate and the option to be interviewed or complete the appropriate
survey.
The sections that follow describe our findings. Through the identification of different
stakeholder groups, we describe the needs of the various groups who are actively
engaged in seeking or providing ASD services. Notably, this report identifies differences
in perspectives among groups and examines the tangible differences in the needs of
the ASD community in different parts of the province. We hypothesize that there may
be meaningful disparities in need – and gaps in service delivery – in rural parts of the
province and we investigate this carefully throughout the report. We also speculate
that the needs of caregivers for school age children with ASD may be different than
those of adults with ASD and we explore these differences in the pages that follow.
The next section presents a secondary data analysis, which is followed by details
about the methods used in the study. Subsequent sections detail the experiences of
caregivers, self-advocates, healthcare service providers, educators and key informants,
and summarize key findings and themes. The final section offers recommendations on
how the needs of the ASD community can be better met and it suggests a prioritized
role for ASNL.
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2.0 Secondary
Data Analysis
2.1 Trends in Recent ASD Research
The literature on autism-related research is extensive and covers diverse areas of
inquiry. As a disorder that encompasses the physical, the social and the behavioural,
innumerable scholarly sources have dedicated space to articles that analyze the
diagnosis, treatment and evaluation of the state of our understanding of ASD and its
related issues today.
This literature review gives an overview of trends in recent ASD research; that is, an
overall sense of what has been published in the last five years in the English language.
The overabundance of sources has led to prioritizing search results according to
identified best practices and outcomes from this study. Results have been divided into
three age-appropriate categories: preschool children, school-aged children and adults.
While there is some overlap in terms of overall diagnosis and treatment research,
much of the literature focuses on studies geared towards one of those groups.
i. Preschool Age Children
Since there is an emphasis on identifying a child with ASD as early as possible, much
of the research on preschool age children concentrates on diagnoses, both from
behavioural and medical perspectives.
Many sources point to the need to assess and evaluate diagnostic models to ensure
they remain an integral part of best practices. For example, a Zurich study examined
the utility of the Development and Well-Being Assessment (DAWBA), which is used
there in clinical settings; they found that when DAWBA information was included in
assessments, clinicians were more likely to add a diagnosis due to that extra testing
mechanism (Aebi et al, 2012). A number of sources assert the need to create and
adapt models that will identify children with autism under the age of two, which is
presently considered difficult. Corsello et al analyze the effectiveness of standardized
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diagnostic tools for under three year olds in community settings in accordance with
best practice guidelines, similar to an analysis of current practices in developing
effective diagnostic tools for children with suspected ASD under two years old
(Zwaigenbaum, 2009) and an evaluation of contemporary diagnostic tools in Scotland
according to best practices (Hathorn et al, 2014).
Evaluation of current models of diagnosing ASD in young children using specific
criteria can also be found: the efficacy of those tools in culturally and linguistically
diverse (CLD) populations (Harris et al 2014); the significance of parents as partners
with health care professionals in the assessment, diagnosis and treatment of ASD
children (Ho, 2014, McConaghie, 2013); and the challenges of diagnosis (which involves
a large number of professionals) in the age of austerity and financial constraints in the
UK and Ireland (Karim et al, 2014).
Sources on medical approaches to identifying young children with ASD often focus
on genetics, such as Berk’s study which analyzed the role of genetic etiology of
ASD becoming more important in diagnoses, the conclusion being that now 25% of
diagnosed children have an “identifiable, causant genetic variant or syndrome” and
these rates are anticipated to rise with improved testing (2015). Other research, such
as European COST (Cooperation in Science and Technology), surveys the state of early
diagnosis and how to collaborate to identify and treat autism in children under two
years old (Bolte et al, 2013). They predict positive outcomes in the future given new
grants and technologies that are now available in Europe. Another systemic review
features the importance of family physician as the medical practitioner who, by using
the Can-MEDS framework, is often the first one to move towards ASD diagnosis in
young children (Lee, 2015).
The critical role of the parent/family in the diagnosis and intervention process of a
young child clearly emerges from the literature. Models such as the Positive Parenting
Adaptive to Autism (VIPP-AUTI) are parent-led interventions (Poslawsky, 2015) where,
after five home visits, parents reported greater feelings of self-efficacy when it came
to interacting with their ASD child. Another example, the Early Start Denver Model
(ESDM) for toddlers with ASD (Rogers et al, 2012), was evaluated for its effectiveness.
Results included more parental interaction and better progress from the children.
Increased improvement was observed with a greater number of intervention hours.
A complementary study investigates the effects that a clinical ASD diagnosis has on
families (Reed, 2012).
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ii. School Age Children
As most children are diagnosed before entering the school system, much of the
literature on school-aged children concentrates on interventions at school to ensure
the medical, educational and social success of the ASD child. Comorbidities feature
prominently during these years as well, often focusing on mental health issues as a
child moves into adolescence.
Models for social intervention are important as a way of inclusion in the K-12 system.
Studies such as Anandson et al (2011) illustrate the importance of developing social
skills through social groups, leisure activities, clubs and societies through their
analysis of 12 studies of children with Asperger’s between 1984 and 2011. Another
study is based on SST (social skills training), which involves teaching ASD children
social and communication skills, often in clinical settings. This research studies the
involvement of teachers and parents in SST and how this affects the child’s overall
adaptive functioning (Dekker, 2014). Evidence-based practice is an important trend
in research and best practices alike; for example, McMahon (2014) describes the
importance of evidence-based practices such as Educational Programming for young
children.
For this age group, there is a smaller body of research that explores new therapies
for children with ASD and their potential efficacy. These include: melatonin therapy
for sleep disturbances (Bruni et al, 2015), where melatonin was found to be
effective in shortening the transition time between wakefulness and sleep as well
as increasing sleep time; hyperbaric oxygen (HBO) therapy (Ghanizadeh, 2012),
where the study could not support the efficacy of HBO therapy for ASD children but
made recommendations for further analysis of this controversial therapy; atypical
antipsychotic medications (McKinney, 2011), which recommends rethinking the use of
these drugs for children with disruptive behaviours due to their negative side effects
and unknown long-term effects; and sensory integration (Schaaf, 2012), which was
deemed safe and feasible by both parents and occupational therapists. Geretsegger et
al (2015) developed guidelines for effective use of music therapy as an intervention for
ASD children.
Since ASD may present with a number of comorbidities, much of the research on
school age children emphasize the physical, behavioural and mental health challenges
that may arise. Some focus on the effectiveness of medications, others on behaviour
modifications and other relevant interventions. The treatment and management
of maladaptive aggression in youth with ASD (Rosato, 2012) is a common theme in
the research, including parent-child interaction Therapy (POT) as an approach for
reducing challenging behaviours in ASD children who have disruptive behaviour
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disorders. Guinchat’s (2015) article discusses the importance of recognizing non-ASD
comorbidities to increase the chance of improving severe challenging behaviours that
have resulted in adolescents being hospitalized in a neurobehavioral unit. Anxiety is
a common comorbidity in school-aged children with ASD, and research demonstrates
outcomes in using various models to treat such anxiety. For example, Johnco (2015)
uses the paediatric anxiety rating scale (PARS) to rate the effectiveness of cognitive
behaviour therapy in reducing anxiety in children with ASD (Johnco, 2015), while Moree
(2010) adapts Cognitive Behaviour Therapy (CBT) to create a standardized treatment
model for children with both anxiety and ASD. Attention Deficit Hyperactive Disorder
(ADHD), another common ASD comorbidity, may be treated with medications, and
medication choice and other clinical practices for the treatment of ADHD in children
with ASD is explored by Mahajan et al 2012. Taking a different approach, Rao (2014)
analyzes the association of behavioural phenotype with ADHD and ASD. Finally,
substance abuse may arise in adolescents with ASD. Studies such as Palmqvist (2014)
investigate substance use disorders (SUD) in ASD adolescents.
As identified in best practices in many jurisdictions, the transition from adolescence
to adulthood is an area of primary concern, specifically as it relates to moving out of
the school system and into the working world and the resultant independence that
adults should be able to enjoy to the best of their capabilities. For example, Hendricks
et al (2009), Ciccarelli (2014), Schall (2010), and Graetz (2010) all explore the challenges
of ASD adults transitioning into the workplace and appropriate interventions and
supports to ensure their success. More specifically, Reid (2010) designed and
evaluated assessment-based interventions to assist adults with ASD obtain success in
job applications/interviews as well as in the workplace.
iii. Adults
The smaller body of literature pertaining to adults with ASD is not surprising given that
advances in ASD diagnosis in recent years mean that many adults with ASD have not
been identified. In fact, Lendhardt’s 2013 article acknowledges the dearth of research
on diagnosing ASD and comorbidities in adults. Therefore, a large portion of the
literature that does pertain specifically to adults with ASD focuses on the specificities
of diagnosing adults and determining appropriate interventions: the efficacy of Autism
Mental Status Exam (AMSE) as a diagnostic tool for adults (Grodberg, 2014); the
identification of adults with ASD using the UK National Institute for Health and Clinical
Education (NICE) guidelines (Pilling et al, 2012), and even pinpointing appropriate
interventions by measuring levels of happiness in adults with ASD (Parons et al, 2012).
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As with adolescents, comorbidities feature in research studies, such as those
related to depression (Chandrasekhar 2015); schizophrenia and Asperger syndrome;
(Lugnegard, 2015); anxiety and depression in young adults with Asperger syndrome
(Lugnegard et al 2011); and the need for routine clinical screening for substance abuse
in adolescents and adults with ASD and ADHD (Palmqvist et al, 2013).
There are a few examples of research on the effects of therapeutic interventions
on adults with ASD, such as mindfulness (Spek, 2013) and dance movement
psychotherapy (Wadsworth, 2014, and Zubala, 2015).
2.2 Best Practices
As might be expected, there is great overlap between the best practices developed
by other countries and the analysis outcomes of the surveys described later in this
document. Therefore it is clear that, while there are many things that Newfoundland
and Labrador is doing well to support children and adults with ASD, the identified
gaps align closely with global trends in developing best practices for such supports.
As relayed in the CASDA report (2014), it is critical to compare the outcomes from
Canadian needs assessments such as this one as well as the CASDA report against
best practices to ensure that appropriate services and programming are in place, and
to ascertain what more remains to be done.
Generally speaking, there are similarities in best practices for all ages – from birth to
death – that focus on the need to ensure that an individual develops to the best of
his/her abilities to enjoy a fulfilling life. They tend to balance between the pragmatic
and the philosophical. More specifically, all best practices documents sourced indicate
that individual supports that encompass all aspects of life, and preferably approach
those in a holistic fashion, are critical. An understanding of how an individual has been
affected by ASD and therefore what support they need is key, as is involving families
at every stage of diagnosis, treatment and beyond. Finally, not only assessment but
also frequent re-assessment and re-evaluation of the supports provided ensure that
they are tailored to the individual as he/she ages and his/her needs evolve. Best
practices identified by three age groupings – preschool, school age and adult – are
delineated below in greater detail, by focusing on guidelines and policies established
by the United Kingdom, the United States, and Australia. It is important to note that
the governmental and legislative structures of these three jurisdictions differ in many
ways; therefore, the kinds of best practices developed and the manner in which they
are regulated and implemented also vary.
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i. Preschool Age Children
Best practices from birth to preschool age focus on the notion of early identification:
the earlier the child is identified as having ASD, the sooner the appropriate support
plan can be put in place to ensure his/her best future can be achieved. Because
much of the literature argues that identification before the age of four is ideal, this is
understandably emphasized in best practices documents. Once a child is identified
with ASD, all other best practices can be followed in the most effective way possible
for the individual.
The United Kingdom has implemented comprehensive legislation and policy
documents related directly to supporting children with autism from birth through
to their transition into adulthood. The document, Special Educational Needs and
Disability Code of Practice: 0 to 25 years (Department for Education and Department
of Health, 2015), is commonly referred to as SEND and relates back to England’s
Children and Families Act of 2014 and its associated regulations. It delineates an
implementation plan, provides definitions, and outlines relevant legislation that covers
both preschool and school age children. The extensive document provides detailed
best practices as they relate to: impartial information, advice and support; working
together across education, health and care for joint outcomes; early years providers;
schools; further education; preparing for adulthood from the earliest years; education,
health and care needs assessment and plans; children and young people in specific
circumstances; resolving disagreements; with appendices covering issues related to
mental capacity and improving practice and staff training in education settings. More
specifically, the early years section of the SEND document outlines best practices that
focus on three areas: early identification, assessment/reassessment, and providing all
necessary supports, revolving around the concepts of Assess, Plan, Do, and Review.
The National Autism Center in the US has identified best practice guidelines for
diagnosis of autism in a young child. These include: an interview with the parent/
caregiver, a review of relevant medical, psychological, and/or school records, a
cognitive/developmental assessment, direct play observation, measurement of
adaptive functioning, and a comprehensive medical examination (National Autism
Center, 2015). Given the focus on early intervention, best practices such as the one
developed by the New York State Department of Health (and reviewed by the national
American Association of Pediatrics) tend to focus on how to identify ASD in a young
child. Their specific protocols are based on these three best practice guidelines (New
York State, 2013):
• The routine employment of objective ASD screening tools at regular intervals
during critical childhood developmental stages;
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• A provider/parent dialogue, using the Modified Checklist for Autism in Toddlers
as a reference, to educate parents about ASD; and
• An appropriate referral mechanism for children who, based on the results of the
screening process, require further evaluation.
The Australian Government’s Department of Families, Housing, Community Services
and Indigenous Affairs (FaHCSIA) commissioned an update in 2012 on an earlier
study that identified the outcomes of early intervention of children with autism. Their
report argues that there has been little research done that directly evaluates the
effectiveness of intervention programs on children with ASD, and so they stress the
importance of identifying best practices in the absence of such studies. Their focus,
primarily on preschool children but including those up to seven years old, identifies
the following key best practices:
• An autism specific curriculum content focusing on attention, compliance,
imitation, language, and social skills;
• Highly supportive teaching environments that deal with the need for
predictability and routine, and with challenging behaviours, obsessions, and
ritual behaviours;
• Support for children in their transition from the preschool classroom; and
• Support for family members via partnership with professionals involved in
treatments. (Prior and Roberts 2012)
ii. School Age Children
Although it is ideal to identify ASD children before they enter the K-12 school system,
it does not always happen. Therefore best practices literature for school age children
includes identification as an important component. However, given that many ASD
children are diagnosed before they begin school, much of the focus during school age
is around inclusion, educational supports and eventual transition out of school and
into the workplace.
As with preschoolers, the UK’s SEND document provides both broad strokes best
practices from ages 0-25 as well as specific best practices for school age children.
The best practices are built around the action plan of Assess, Plan, Do, and Review
with age-appropriate recommendations. Best practices are delineated in the following
areas: equality and inclusion, medical conditions, career guidance, identifying Special
Educational Needs (SEN) children in schools, special educational provision in schools,
and SEN support in schools. Extensive record keeping is required and both students
and parents must be included along the way to ensure that goals are outlined,
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outcomes are met, and assessment/reassessment is a process that involves all
relevant parties.
The US’s National Autism Center has also created a best practices document based
on evidence-based practice for ASD students in the American school system. The
document acknowledges the growing number of students diagnosed with ASD and
the challenges this creates in schools; therefore, it advises a systemic approach to
supporting students with ASD, their educators and other support staff:
School systems will be best served by establishing a strong team to plan for systemwide improvements in service delivery. The team must take a systemic approach that
considers the needs of all parties involved. It must address barriers that result from
staffing concerns, and respond to the need for appropriate resources. The team must
also establish clear procedural guidelines, along with a plan to sustain improvements.
Only then can evidence-based practices be achieved, focusing on comprehensive
behavioural treatment, joint attention intervention, modeling, naturalistic teaching
strategies, peer training, pivotal response treatment, scheduling, self management
and story-based interventions as a means of enabling school age students with ASD
achieve their full potential within the system.
In 2011, Aspect Australia released what they call a comprehensive approach
towards education for school age students with ASD; comprehensive meaning
that there is no one approach or one fit in terms of the needs of ASD children, and
therefore, their suggested best practices must be tailored to suit each student with
a unique, specialized approach. They divide their approach into two interrelated
parts. The student focus incorporates best practices related to positive behaviour
support, appropriate curriculum, individualized planning, environmental supports
and structured teaching approaches. The systems focus includes professional
development, a learning support team, family involvement and support, and
supported transition and inclusion.
iii. Adults
The literature on adults with ASD is sparse and emerging, primarily because most
of the studies on diagnosis, assessment and treatment have focused on children.
However, given that many with ASD are now growing up and reaching adulthood,
researchers and providers are trying to catch up to understand the unique needs
of ASD adults and the supports they require. Frankly put by the Autism Society of
Delaware, while there are good supports for autistic children, when they transition
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to adulthood, there are few appropriate supports. Because of this, many ASD adults
enter programs for adults with mental illness or cognitive disabilities, which are not
suitable. The Autism Society of Delaware further argues that, if appropriate supports
are not put in place, then all the time, money and expertise dedicated to children with
ASD is wasted and those children – now adults – have been failed by the system.
Transition from school into adulthood is viewed as the most vulnerable aspect of
being an adult with ASD followed closely by the lack of research and supports in place
for adults. The literature suggests that a number of jurisdictions – some national,
others regional – are developing their own best practices based on current research
and are moving forward to create policy based on those best practices.
The United Kingdom is considered a leader in terms of developing national guidance
strategies on diagnosis, care and management of autism, in particular to the transition
from childhood to adulthood. This began with the creation of the Autism Act in 2009
and subsequent 2010 Autism Strategy the first of its kind in the UK and specifically
targeted towards adults. The initial strategy (2010) focused on 18 items, following
the government’s vision that “all adults with autism are able to live fulfilling and
rewarding lives within a society that accepts and understands them. They can get a
diagnosis and access support if they need it, and they can depend on mainstream
public services to treat them fairly as individuals, helping them make the most of
their talents. The strategy acknowledges that this is fundamentally a human rights/
equality issue and that public services have often failed adults with autism. It further
recognizes that many ASD adults have no social or housing support; need support
in gaining employment and enabling independent living; their health needs must
be identified earlier; awareness must be raised with employers about hiring autistic
adults; capacity within the National Health Service must be increased for diagnosing
ASD in adults; specialized autism teams must be commissioned locally; access to
support services must be improved; the welfare system, benefits and tax credit
systems must be changed; and local partnerships must be developed to implement
the national direction. Critically, the document asserts that diagnosis is just the
beginning of determining which services are necessary for an individual. The 2010
policy provides clear delivery, implementation and review plans and timelines and the
subsequent 2014 update document reviews its success and looks at how they can
continue to improve in the future.
their own best practices for the diagnosis and support for adults with autism, reflected
both in this report and in other documents (Autism Society of Delaware, 2015, and
University of Maine Center for Community Inclusion and Disability Studies, 2012, for
example). A number of common themes emerge from these reports regarding both
transition from school to adulthood and subsequent support for the ASD adult in the
community.
• Supports for all aspects of the individual’s life must be coordinated, not
segmented; these include home, work, recreation and socialization;
• The individual and family must be involved as much as possible with transitions
and establishing subsequent supports with minimal administrative involvement;
• Resources must be locally sourced and sustainable and priorities established in
a similar fashion;
• Inclusion, vocational training and identification of skills while in school;
• Assistive technology, paid employment and assessment of future supports
during the transition to the adult world and/or postsecondary education;
• Training in self-advocacy and self-determination; and
• All involved in supporting the ASD adult must live a shared philosophy.
Somewhere between the approaches taken in the UK and the US, Australia has
developed a national approach to understanding the unique challenges faced by
adults with ASD but provides supports at the provincial/state level. In 2013, the
Australian government created the Cooperative Research Centre for Living with
Autism Spectrum Disorders (Autism CRC). They identified three areas of evidencebased research: diagnosis, education and adult life needs. Autism Spectrum Australia
– or Aspect Australia – has produced a report, based in large part on the pioneering
UK adult ASD study, on diagnosis and life course outcomes of ASD adults, which
identifies gaps and ways forward to support ASD adults, but financial, family and
service supports may be found more locally throughout the country.
While the US does not have a national adult autism strategy, the US Centers for
Medicare and Medicaid Services (CMS) commissioned a study on the federal and state
level services for individuals of all ages with autism which resulted in a document
produced in 2014 (L&M Policy Research). The report reveals the uneven distribution
of services at the state level, although a number of individual states have developed
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3.0 Methods
3.2 Qualitative Research
In this section, the research methods used to assess the needs of the ASD community
in NL are described.
3.1 Purpose
The goal of this report is to capture the views, broadly defined, of the ASD community
in NL. First and foremost, we obtained feedback from individuals and families that
are living day-to-day with ASD to determine which programs and services have been
effective in providing treatment and therapy, given that we place great importance
on the viewpoints of those most directly affected by ASD. We also collected the
opinions of those individuals who are responsible for providing care and counsel to
families coping with ASD. We believe their views, in terms of where the system works
and where it is failing, are crucial to understanding the needs of the ASD community.
To achieve this comprehensive picture of ASD needs in the province, we used three
approaches as our primary research methods. First, interviews were conducted with a
wide range of individuals, caregivers and service providers from across the province.
Second, informed by the interviews, a series of online surveys were developed and
widely publicized to encourage maximum participation. The sections below detail the
implementation and execution of these complementary research strategies. Third, our
research team conducted a series of interviews with key decision-makers regarding
the delivery of programs and services to the ASD community. We believe this provides
a more comprehensive picture of the needs of the ASD community in NL. The use of
both qualitative and quantitative methods is referred to as a mixed methods approach
and is useful when trying to achieve multiple research objectives. In this needs
assessment, we quantify individuals’ experiences using structured survey questions,
and capture individual narratives using semi-structured interviews. This allows the
research team to speak to the breadth and depth of challenges facing the ASD
community in NL.
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Qualitative research provided a focus on contexts and importance of “lived experiences”
for the purpose of inductive research. This approach allowed for a systematic and
rigorous process for collecting important information pertaining to ASD in the province.
Qualitative data enabled the researchers to understand detailed information about
setting and context, and gave voice to participants by using their words through
quotes. In-depth interviews with parents of children with ASD, adults with ASD, service
providers, and key informants across the province were conducted between June 2014
and May 2015. We used a “snowball approach” whereby key individuals who were
identified in preliminary interviews were later sought out for their views. Most individuals
who were contacted agreed to participate. The interviews were conducted by several
Research Assistants and were audio-recorded. Audio-recorded interviews were given to
a transcriptionist and PDF documents were created of the verbatim conversations. Initial
coding of the interviews led to the creation of a general thematic analysis by examining
identifying patterns and themes in interview transcripts. Finally, analysis was conducted
using NVivo Software 10.2.0.
Table 3-1: Number of Qualitative Interviews
RELATIONSHIP
NUMBER
Caregivers
20
Self-Advocates
3
Educators
5
Health Service Providers
6
Key Informant (Health)
3
Key Informant (Education)
5
Total Interviewed
42
3.3 Quantitative Research
Quantitative research was used for deductive purposes by collecting information that is
measurable and yields numeric data that were analyzed statistically in order to compare
descriptive information and examine relationships among variables. Surveys were
designed in order to achieve this. At various points in the surveys, participants were
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also given the opportunity to expand upon their answers and add their own narratives
regarding their experiences as recipients or providers of services, thereby further adding
to the body of qualitative data collected.
The survey was open to the public for five weeks, from March 11 to April 14, 2015.
During this period, 754 survey responses were received, of which 643 were usable.
Survey Participants
Survey Development
Dr. Richard Audas, Associate Professor, Faculty of Medicine, Memorial University of
Newfoundland, developed the online survey for ASNL in collaboration with Devonne
Ryan, Memorial University of Newfoundland and Graduate Research Assistants Patrick
Murphy and Shauna Wells.
The surveys provided a model for soliciting data from the ASD community in NL and
for planning purposes by ASNL. Four separate surveys were developed and targeted
at: caregivers; individuals with ASD (self-advocates); service providers; and educators.
The surveys were approved by the Health Research Ethics Board (HREA) at Memorial
University of Newfoundland. Following HREA approval, a pilot survey was distributed to
ensure its ease of use and clarity of questions, before it was made available to the ASD
community.
The surveys were available through Fluid Surveys, an online platform that allows for
data collection and storage. Appropriate skip patterns were built into the survey so that
individuals only answered questions that were relevant to their experience with ASD.
Analysis was conducted using SPSS (Version 21) software. The data was broken down
into categories with frequency distribution and means subsequently completed on the
data. Cross tabulation was performed on variables with respect to age categories and
region.
Adults with ASD, family members of individuals with ASD, service providers and
educators from across NL were invited to participate.
There were several surveys that were opened but not completed. When these surveys
were removed, 257 caregiver surveys, 12 self-advocate surveys, 148 service provider
surveys and 226 educator surveys were completed.
Eight caregivers did not report their child having a formal diagnosis by a qualified
health professional. Because these individuals identified themselves as being part of
the ASD community of NL, they were included within the study.
Despite focused outreach across the province, there were some concerning gaps
that existed in the survey responses. Only 4 caregiver responses were captured from
Labrador. Based on the low representation from this region, it is difficult to draw
conclusions specifically from this area and the results should be used with caution.
The self-advocate survey also yielded a low response rate, particularly in the low
participation regions. All these respondents and their data are included within this
report; however, because of the low numbers, this data is less meaningful.
The NL Autism Needs Assessment Survey provides a comprehensive overview of ASD
throughout the province. Regardless of the number of respondents in each category
and each geographic region, all eligible respondent responses are included.
Survey Dissemination
ASNL members, community organizations, school districts, and partners from across NL
were notified of the survey one month prior to its release date.
Marketing materials were used to assist with the dissemination efforts of the survey.
Notice of the survey was posted on ASNL’s website. Social media was also used by
ASNL to release details of the survey launch. Furthermore, radio advertisements
were disseminated two weeks prior to its launch. Those interested in participating
were encouraged to register with the study team so they could be notified when the
survey was ready to be accessed. They were sent a link to complete the survey at the
appropriate time.
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3.4 Conclusion
TABLE 3-2: Frequency and Percentage of Each Respondent
TYPE OF INTERVIEW COMPLETED
NUMBER OF INTERVIEWS
Caregivers
262 (40.75%)
Self-Advocates
12 (1.87%)
Health Service Providers
148 (23.02%)
Educators
226 (35.15%)
Total
643
Through the active solicitation of participants through a variety of outreach
approaches and through the use of both qualitative and quantitative methodologies,
the research team believes this report captures the broad needs of the ASD
community from a variety of perspectives.
First and foremost, the needs of individuals and their caregivers living with ASD must
be described. Also of importance are the viewpoints of those who provide services
and supports to these individuals and their families. Virtually any group of individuals
will have unmet needs and this was understood before undertaking this research.
A holistic view of the ASD community is necessary to make recommendations about
which needs should be prioritized. We believe this report provides such a view.
TABLE 3-3: Frequency and Percentage of Each Respondent by Region
REGION
CAREGIVERS
SERVICE PROVIDERS
EDUCATORS
Avalon
149 (56.87%)
83 (58.04%)
47 (20.80%)
Eastern
39 (14.89%)
28 (18.92%)
54 (23.89%)
South Central
35 (13.36%)
10 (6.76%)
34 (15.04%)
Western
35 (13.36%)
24 (16.22%)
59 (26.11%)
Labrador
4 (1.53%)
3 (2.03%)
32 (14.16%)
Total
262
148
226
*Self-advocates are removed from the above chart to prevent identifying information being presented.
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4.0 Respondents
Receiving Services
4.1 Caregivers
Caregivers were the largest group of participants in this study. Being the parent or
caregiver to an individual with ASD can be overwhelming with huge challenges. There
were more caregiver respondents than could be accommodated with interviews
and those who responded to the survey had a great deal of feedback. This section
describes caregiver responses and the challenges they encounter.
Table 4-2 presents demographic information for caregivers broken down by age
of child with ASD. Children with ASD were predominantly male (83.3%). This result
was expected, as males are at increased risk for ASD compared to their female
counterparts.
The age of most parents was between 30-39 and 40-49 years of age. For caregivers
of adults with ASD, most respondents were between 50-59 and 60 years of age
and older. Exact age was not asked to ensure anonymity. A majority of caregivers
of preschoolers and adults with ASD were married (71.9% and 81.8%, respectively).
Interestingly, 16.7% of parents with school-aged children were separated or divorced,
and 24.1% were single4. The increased stress of having a child with ASD can add
additional strain on a relationship.
A large number of caregivers (41.0%) had completed a college diploma; 21.1%
reported having a university undergraduate degree, while 17.2% reported finishing
a professional degree (i.e. engineer, physician, doctorate). Caregivers commonly
reported having two children (42.9%), while 34.7% reported having just one child.
I. Caregiver Demographics
The caregiver demographic analyses are based on 262 survey respondents from
across NL. In addition, 20 caregivers were interviewed. Most caregivers interviewed
were parents of children with ASD. These interviews were extensive.
As shown in Table 4-1, 90% of caregiver survey respondents were parents, followed
by extended family at 6%. Eight participants (3%) reported ‘other’ which included
caregivers, home therapists, friends, and a foster parent.
TABLE 4-1: Caregiver Breakdown by Relationship to Individual With ASD
RELATIONSHIP
NUMBER (%)
Parent
232 (90%)
Extended Family
15 (6%)
Guardian
2 (1%)
Other*
8 (3%)
* Caregiver, Home therapist, Child youth care worker, Friend or Foster Parent
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4 While not all of these providers are able to make formal diagnoses, some individuals responding did not receive a
formal diagnosis.
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TABLE 4-2: Demographic Characteristics of Caregivers By Age of Individual with ASD5
DEMOGRAPHIC
TOTALS
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
Gender of child with ASD
TOTALS
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
No High School Diploma
12 (4.7)
3 (4.7)
8 (5.6)
1 (2.1)
High School Diploma
32 (12.5)
11 (17.2)
17 (12.0)
4 (8.5)
DEMOGRAPHIC
Education of Parents
Male
209 (83.3)
51 (79.7)
126 (88.7)
32 (71.1)
College Diploma
105 (41)
26 (40.6)
63 (44.4)
13 (27.7)
Female
42 (16.7)
13 (20.3)
16 (11.3)
13 (28.9)
Undergraduate Degree
54 (21.1)
13 (20.3)
31 (21.8)
10 (21.3)
Professional Degree
44 (17.2)
8 (12.5)
20 (14.1)
16 (30.4)
9 (3.5)
3 (4.7)
3 (2.1)
3 (6.4)
Age of Parent/Guardian
20-29 years old
23 (9.2)
16 (25.4)
4 (2.8)
3 (6.3)
Other
30-39 years old
86 (34.3)
37 (58.7)
48 (34.0)
1 (2.1)
Number of children living in household
40-49 years old
94 (37.4)
7 (11.1)
78 (55.3)
9 (19.1)
Zero
23 (9.4)
3 (4.8)
4 (2.9)
16 (34.8)
50-59 years old
29 (11.6)
1 (1.6)
9 (6.4)
19 (40.4)
One
85 (34.7)
23 (36.5)
52 (38.0)
10 (21.7)
60+ years old
19 (7.6)
2 (3.2)
2 (1.4)
15 (31.9)
Two
105 (42.9)
31 (49.2)
58 (42.2)
16 (34.8)
Four
25 (17.2)
4 (6.3)
17 (12.4)
4 (8.7)
Relationship to Individual with ASD
Parent
230 (91.6)
59 (92.2)
129 (90.8)
42 (93.3)
Four
6 (2.5)
0 (0.0)
6 (4.4)
0 (0.0)
Extended Family
11 (4.4)
4 (6.3)
6 (4.2)
1 (2.2)
Seven
1 (0.4)
1 (1.6)
0 (0.0)
0 (0.0)
Guardian
2 (0.8)
0 (0.0)
2 (1.4)
0 (0.0)
Other
8 (3.2)
1 (0.1)
5 (3.5)
2 (4.4)
Married
144 (66.7)
46 (71.9)
62 (57.4)
36 (81.8)
Separated/Divorced
28 (13.0)
6 (9.4)
18 (16.7)
4 (9.1)
Single
40 (18.5)
12 (18.8)
26 (24.1)
2 (2.3)
Widowed
4 (1.9)
0 (0.0)
2 (1.9)
2 (2.3)
Marital Status
Region
Avalon
68 (26.0)
20 (31.2)
12 (25.5)
36 (23.8)
Northeast Avalon
81 (30.9)
19 (29.7)
22 (46.8)
40 (26.5)
Eastern
39 (14.9)
8 (12.5)
9 (19.1)
22 (14.6)
South Central
35 (13.4)
8 (12.5)
1 (2.1)
26 (17.2)
Western
35 (13.4)
8 (12.5)
2 (4.3)
25 (17.7)
Labrador
4 (1.5)
1 (1.6)
1 (2.1)
2 (1.3)
5 Due to incomplete survey returns, figures do not always total 262.
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There were few differences when comparing the demographics of caregivers of
preschoolers, school-aged children, and adults. One exception would be caregiver age,
which increased with age groupings. Another was the increased divorce rate among
caregivers of school-aged children. Service provision is at its highest in this group;
however, it can be stressful for caregivers when determining children’s needs at this age.
Rating of Everyday Skills and Behaviours
A majority of caregivers ranked their child’s gross and fine motor skills as moderately
below average (49.3%) or normal (39.8%). Object use was ranked similarly, with most
caregivers reporting normal (45.2%) or moderately below average (39.2%). Sensory
stimulation was rated moderately below average (33.6%) and above average (29%).
Adaptation to change was most frequently ranked as moderately below average (56.4%).
Activity level was commonly rated as normal (33.3%) and moderately below average
(32.9%). Both verbal communication and non-verbal communication were ranked
moderately below average (31.9% and 43.5%, respectively). As expected, a wide range of
skills and behaviours were reported from caregivers. We know that each child with ASD
has his/her own pattern of autism. There is wide variation in symptoms among children
with ASD, and this proved true in our sample.
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TABLE 4-3: Caregiver Rating of Everyday Skills and Behaviours
RANKING
TOTAL
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
Gross and Fine Motor Skills
Above Average
11 (5.0)
1 (1.8)
8 (6.3)
2 (5.6)
Normal
88 (39.8)
21 (36.8)
51 (39.8)
16 (44.4)
Moderately Below Average
109 (49.3)
32 (56.1)
61 (47.7)
16 (44.4)
Severely Below Average
11 (5.0)
3 (5.3)
7 (5.5)
1 (2.8)
Not sure
2 (0.9)
0 (0.0)
1 (0.8)
1 (2.8)
Above Average
8 (3.7)
1 (1.8)
6 (4.7)
1 (2.9)
Normal
98 (45.2)
25 (44.6)
59 (46.5)
14 (41.2)
97 (39.2)
24 (42.9)
49 (38.6)
12 (35.3)
12 (5.5)
4 (7.1)
5 (3.9)
3 (8.9)
Not Sure
14 (6.5)
2 (3.6)
8 (6.3)
4 (11.8)
Object Use
TOTAL
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
Above Average
29 (13.5)
5 (8.9)
20 (16.0)
4 (11.1)
Normal
52 (24.4)
5 (8.9)
37 (29.6)
10 (27.8)
68 (31.9)
20 (37.7)
38 (30.4)
10 (27.8)
62 (29.1)
26 (46.4)
28 (22.4)
12 (33.3)
Not sure
2 (0.9)
0 (0.0)
2 (1.6)
0 (0.0)
Above Average
8 (3.8)
2 (3.6)
5 (4.2)
1 (3.0)
Normal
58 (27.8)
16 (28.6)
33 (27.5)
9 (27.3)
81 (43.5)
28 (50.0)
48 (40.0)
15 (45.5)
37 (17.7)
8 (14.3)
22 (18.3)
7 (21.2)
Not sure
15 (7.2)
2 (3.6)
12 (10.0)
1 (3.0)
RANKING
Verbal Communication
Non-verbal Communication
ii. Geographic Distribution
Sensory Stimulation
Above Average
63 (29.0)
15 (26.8)
42 (33.3)
6 (17.1)
Normal
46 (21.2)
11 (19.6)
23 (18.3)
12 (34.3)
73 (33.6)
21 (37.5)
43 (34.1)
9 (25.7)
14 (6.5)
4 (7.1)
8 (6.3)
2 (5.7)
Not sure
21 (9.7)
5 (8.9)
10 (7.9)
6 (17.1)
Above Average
5 (2.3)
1 (1.8)
4 (3.1)
0 (0.0)
Normal
55 (25.2)
18 (32.1)
26 (20.5)
11 (31.4)
123 (56.4)
29 (51.8)
77 (60.6)
17 (48.6)
32 (14.7)
8 (14.3)
20 (15.7)
4 (11.4)
Not sure
3 (1.4)
0 (0.0)
0 (0.0)
3 (8.6)
Above Average
52 (23.7)
20 (37.0)
27 (21.4)
5 (13.9)
Normal
73 (33.3)
27 (50.0)
39 (31.0)
7 (19.4)
72 (32.9)
7 (13.0)
51 (40.5)
14 (38.9)
18 (8.2)
1 (1.9)
8 (6.3)
9 (25.0)
Not sure
4 (1.8)
2 (3.7)
1 (0.8)
1 (2.8)
Adaptation to Change
Location of caregivers was divided into six regions: Avalon, North East Avalon, Eastern,
South Central, Western, and Labrador. The Avalon and North East Avalon have the
greatest population density, with 26.0% and 30.9% of caregivers from these regions
respectively. Additionally, 13.4% were from South Central, 13.4% from Western, 14.9%
from Eastern, and 1.5% from Labrador. Labrador is an isolated area of the province;
therefore, the lower response rate in this region was not surprising. Regardless of
region, most identified caregivers were a parent of a child with ASD and most were
married. No notable differences were observed when the demographic data was
broken down by region.
Activity Level
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FIGURE 4-1: Caregivers Broken Down by Region
TABLE 4-5: Demographic Information Broken Down by Region
Avalon
13%
North East Avalon
26%
AVALON
N (%)
Eastern
South Central
31%
13%
2%
NORTH
EAST
AVALON
N (%)
EASTERN
N (%)
SOUTH
CENTRAL
N (%)
WESTERN
N (%)
LABRADOR
N (%)
Age of Caregiver
Western
20-29
10 (14.9)
4 (4.8)
3 (7.9)
3 (12.0)
3 (8.6)
6 (60.0)
Labrador
30-39
25 (37.3)
18 (21.7)
10 (26.3)
14 (56.0)
16 (45.7)
2 (20.0)
40-49
22 (32.8)
38 (45.8)
17 (44.7)
6 (24.0)
12 (34.3)
0 (0.0)
50-59
7 (10.4)
13 (15.7)
4 (10.5)
1 (4.0)
3 (8.6)
2 (20.0)
60+
3 (4.5)
10 (12.0)
4 (10.5)
1 (4.0)
1 (2.9)
0 (0.0)
15%
Relationship to Individual with ASD
TABLE 4-4: Caregivers by Age Group of Child With ASD and by Region
Parent
60 (88.2)
77 (93.9)
37 (94.9)
20 (80.0)
33 (94.3)
4 (100)
Extended
Family
3 (4.4)
4 (4.9)
1 (2.6)
4 (16.0)
0 (0.0)
0 (0.0)
Guardian
4 (5.9)
1 (1.2)
1 (2.6)
1 (4.0)
1 (2.9)
0 (0.0)
Other
1 (1.5)
0 (0.0)
0 (0.0)
0 (0.0)
1 (2.9)
0 (0.0)
REGION
TOTAL
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
Avalon
68 (26.0)
20 (31.2)
12 (25.5)
36 (23.8)
Married
50 (73.5)
61 (74.4)
29 (78.4)
18 (66.7)
24 (68.6)
3 (75.0)
Northeast Avalon
81 (30.9)
19 (29.7)
22 (46.8)
40 (26.5)
9 (13.2)
12 (14.6)
2 (5.4)
3 (11.1)
2 (5.7)
0 (0.0)
Eastern
39 (14.9)
8 (12.5)
9 (19.1)
22 (14.6)
Separated/
Divorced
South Central
35 (13.4)
8 (12.5)
1 (2.1)
26 (17.2)
Single
9 (13.2)
7 (8.5)
5 (13.5)
6 (22.2)
8 (22.9)
1 (25.0)
Western
35 (13.4)
8 (12.5)
2 (4.3)
25 (17.7)
Widowed
0 (0.0)
2 (2.4)
2 (2.4)
1 (2.7)
1 (2.9)
0 (0.0)
Labrador
4 (1.5)
1 (1.6)
1 (2.1)
2 (1.3)
Page 44
Marital Status
Gender of Child with ASD
Male
55 (83.3)
65 (78.3)
32 (82.1)
25 (100)
27 (77.1)
4 (100.0)
Female
11 (16.7)
18 (21.7)
7 (17.9)
0 (0.0)
8 (22.9)
0 (0.0)
Page 45
iii. Analysis
TABLE 4-6: Diagnosis, Referral, and Initial Assessment
(a) Referral & Diagnosis
The vast majority of respondents had received an official diagnosis (95.3%).
Paediatricians provided most referrals (38.5%). Paediatricians are concerned with
more than physical wellbeing; they are also involved in early detection of other
problems, such as ASD, that affect children and adolescents. Referrals also came
from family physicians (18.3%), and ‘other’ (26.0%), which included child development
specialist, child management specialist, ADOS team, school, day care provider,
community health nurse, nurse, and self-referral6.
When caregivers were asked about their satisfaction with “wait times” for the referral
process, most were very dissatisfied (30.7%). A developmental paediatrician most
often made the formal diagnosis (59.4%), followed by child psychologist (13.2%), and
other ADOS (13.4%). When caregivers were asked to rate their satisfaction with wait
times for the “diagnosis process,” the most common rating was “somewhat satisfied”
(29.4%).
However, interviewees experienced long wait times for services such as occupational
therapy (OT), audiology, speech language therapy (SLP) and more. The overall
satisfaction level of wait times for services was very low. Most caregivers described
access to services as a roadblock to their children’s care. While the CASDA Report
(2014) does not focus on wait times for ASD services, it is a common complaint
within the community. Caregivers recognize that the more quickly their child receives
treatment, the better their chances for improved development. But they hear “Sorry,
you’ll have to wait.” An issue across the country, an article released by Concordia
University concludes that families often wait several years to access autism services
covered by the public healthcare system (2015).
Caregivers of preschoolers were more dissatisfied overall with wait times for referral
and diagnosis compared to other age groups. Caregivers of adults with ASD were
more likely to be satisfied with wait times for referral and diagnosis when compared to
caregivers of preschoolers and school age children.
TOTAL
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
Yes
163 (95.3)
41 (91.1)
96 (97.0)
26 (96.3)
No
9 (4.7)
4 (8.9)
3 (3.0)
1 (2.7)
DIAGNOSIS AND
ASSESSMENT
Received Formal Diagnosis
Satisfaction with Wait times for Referral
Very satisfied
34 (20.1)
6 (14.0)
21 (21.0)
7 (26.9)
Somewhat satisfied
41 (24.3)
8 (18.6)
26 (26.0)
7 (26.9)
Somewhat dissatisfied
26 (15.4)
10 (23.3)
21 (21.0)
5 (19.2)
Very dissatisfied
52 (30.7)
18 (41.9)
30 (30.0)
4 (15.4)
N/A
6 (3.6)
1 (2.3)
2 (2.0)
3 (11.5)
Service Provider Making Diagnosis
Family doctor
4 (1.8)
1 (2.0)
2 (1.5)
1 (2.6)
Speech Pathologist
17 (7.8)
4 (8.2)
9 (6.9)
4 (10.5)
Developmental Paediatrician
129 (59.4)
31 (63.3)
80 (61.5)
18 (47.4)
Child Psychologist
29 (13.2)
6 (12.2)
19 (14.6)
4 (10.5)
Child Psychiatrist
9 (4.1)
0 (0.0)
4 (3.1)
5 (13.2)
Other
29 (13.4)
7 (14.3)
16 (12.3)
6 (15.8)
Satisfaction with Wait times for Initial Assessment
Very satisfied
33 (19.4)
7 (16.3)
19 (19.0)
7 (25.9)
Somewhat satisfied
50 (29.4)
11 (25.6)
32 (32.0)
7 (25.9)
39 (22.9)
9 (20.9)
24 (24.0)
6 (22.2)
Very dissatisfied
42 (23.5)
16 (37.2)
22 (22.0)
4 (14.8)
N/A
6 (3.5)
0 (0.0)
3 (3.3)
3 (11.1)
6 While not all of these providers are able to make formal diagnoses, some individuals responding did not receive a
formal diagnosis.
Page 46
Page 47
When asked about the referral and diagnosis process, although many caregivers had
noticed their child was not reaching critical “milestones,” some were initially surprised
or in denial after receiving the ASD diagnosis. There is no doubt that early intervention
is imperative to improving future outcomes of children. It is widely accepted as the key
towards building on strengths, improving behaviours, and remediating weaknesses.
Caregivers reported feeling lost in their journey through ASD referral, diagnosis, and
service acquisition. They described the process of “navigating the system” as being
challenging and confusing.
When asked about barriers to accessing services, caregivers said there were not
enough financial and human resources (27%). Other barriers they described included:
• Not enough resources (48%);
• Too old to access services (19%);
• Lack of trained professionals (17%);
• Too far to travel to access services (13.4%);
• Not being able to afford the services (13%);
(b) Healthcare Services and Training
• Negative experiences (10%);
Healthcare service availability responses show that preschoolers and school-aged
children had more services available when compared to adults. Family doctors were
reported as the most available service (52.0%), while occupational therapy (33.5%)
and ABA (32.7%) were also often accessed. Younger children with ASD used ABA most
frequently. Table 4-6 illustrates the reduction in service availability as individuals with
ASD enter adulthood.
CASDA (2014) reported that individuals with ASD received a number of formal
psychiatric diagnoses, including anxiety disorders (25%), OCD (17%), and depression
(8%). We only specified psychiatric diagnoses when examining in the adult population;
however, we determined that 23.9% of individuals “across all age groups” with ASD
have experienced mental illness.
• Too young to access services (3.5%); and
• Diagnosis does not qualify for services (7%).
Caregivers reported that mental health services were available to just 4.3% of ASD
individuals. The number was higher for caregivers of school age children (5.6%), and
higher again for caregivers of adults (6.4%). Use of psychiatry showed similar trends,
with caregivers of school age children reporting availability at 12.6% and caregivers
of adults reporting 17%. The number of older individuals with ASD actually availing
of more mental health and psychiatry services is still low considering that 27.7% of
school age children and 46.2% of adults with ASD were reported to be dealing with
mental health issues of some sort.
Caregivers reported a number of mental health co-morbidities for persons with
ASD, and our survey confirmed this by reporting that 23.9% of individuals with ASD
had some form of mental health condition. The prevalence of other mental health
conditions increased from 4.7% to 46.2% as the age of individuals with ASD increased
from preschooler to adult. This research corroborates the literature that demonstrates
that mental health issues such as depression, anxiety, and obsessive-compulsive
disorder (OCD) are closely linked to ASD. Caregivers asked to list mental health issues
challenging individuals with ASD reported:
• Depression;
• Anxiety; and
• Obsessive Compulsive Disorder
Page 48
Page 49
TABLE 4-7: Services Related to ASD
SERVICES
TOTAL
N=%
CAREGIVERS
OF CHILDREN
UP TO 5 YEARS
(N=64)
CAREGIVERS
OF CHILDREN
6-17 YEARS
(N=143)
CAREGIVERS
OF 18+ YEARS
(N=47)
Services that are available
Speech Therapy
72 (28.3)
22 (34.4)
46 (32.2)
4 (8.5)
Occupational Therapy
85 (33.5)
32 (50.0)
50 (35.0)
3 (6.4)
Physiotherapy
24 (9.4)
14 (21.9)
9 (6.3)
1 (2.1)
Family Doctor
132 (52.0)
34 (53.1)
78 (54.5)
20 (42.6)
Psychiatry
27 (10.6)
1 (1.6)
18 (12.6)
8 (17.0)
ABA
83 (32.7)
39 (60.9)
41 (28.7)
3 (6.4)
Respite
23 (9.1)
0 (0.0)
12 (8.4)
11 (23.4)
IBIB
1 (0.4)
0 (0.0)
1 (0.7)
0 (0.0)
Mental Health
11 (4.3)
0 (0.0)
8 (5.6)
3 (6.4)
Life Skills training
11 (4.3)
0 (0.0)
6 (4.2)
5 (10.6)
Other*
28 (11.0)
8 (12.5)
16 (11.2)
4 (8.5)
*Includes behavior management, child management specialist, development pediatrician, social
programming
Were health care professionals equipped to deal with ASD?
Yes
118 (70.2)
38 (76.0)
65 (69.9)
15 (60.0)
No
50 (29.8)
12 (24.0)
28 (30.1)
10 (40.0)
Overall were health services beneficial
Yes
123 (77.3)
31 (77.5)
72 (75.0)
20 (87.0)
No
36 (22.7)
9 (22.5)
24 (25.0)
3 (13.0)
TOTAL
N=%
CAREGIVERS
OF CHILDREN
UP TO 5 YEARS
(N=64)
CAREGIVERS
OF CHILDREN
6-17 YEARS
(N=143)
CAREGIVERS
OF 18+ YEARS
(N=47)
Too young to access
services
9 (3.5)
5 (7.8)
3 (2.1)
1 (2.1)
Too old to access services
49 (19.3)
3 (4.7)
32 (22.4)
14 (29.8)
Diagnosis does not qualify
for services
46
2
12
3
Distance too far to travel
46
10
19
5
Other*
14
8
12
5
SERVICES
* Lack of support, IQ, refusal from programs, no services, unaware of services, long wait times and waitlists
Most caregivers reported being very satisfied or somewhat satisfied with services
used. Of respondents surveyed, 66% believed that healthcare professionals were
equipped to deal with individuals with ASD, while 34% believed they were unprepared.
Overall, 84% said the services provided were beneficial for their child. However,
increased awareness surrounding recognition of ASD is required in the professional
community.
Even with the supports that are in place, caregivers reported barriers in terms of what
was available versus what was needed as well as what was accessible. NL caregivers
represented in CASDA’s National Needs Assessment Survey identified similar top
ranking barriers to accessing ASD services (2014). Table 4-8 illustrates the top ranked
barriers to accessing services; notably, three of the four top ranked barriers are the
same in both studies.
TABLE 4-8: Barriers to Services Compared to CASDA
Dealt with Mental Health Issues
Yes
38 (23.9)
2 (4.7)
24 (27.7)
12 (46.2)
No
121 (76.1)
41 (95.3)
66 (72.2)
14 (53.8)
*Anxiety, depression, OCD, ADHD
NL NEEDS ASSESSMENT
Greatest Barriers to Service
Can’t afford services
57 (22.4)
12 (18.8)
38 (26.6)
7 (14.9)
Negative experiences
25 (9.8)
6 (9.4)
16 (11.2)
3 (6.4)
Not enough resources
121 (47.6)
38 (59.4)
70 (49.0)
13 (27.7)
Lack of trained
professionals
76 (29.9)
20 (31.3)
44 (30.8)
12 (25.5)
Page 50
CASDA
47.6%
58%
Lack of trained professionals
29.9%
44%
Can’t afford services
22.4%
Services too distant
31%
Too old to access services
19.3%
Being too old to receive services
31%
Page 51
TABLE 4-9: Satisfaction With ASD Related Services
CAREGIVERS OF
CHILDREN UP TO
5 YEARS
(N=64)
CAREGIVERS
OF CHILDREN
6-17 YEARS
(N=143)
CAREGIVERS
OF 18+ YEARS
(N=47)
Speech Language
Very Satisfied
Somewhat Satisfied
Somewhat Dissatisfied
Very Dissatisfied
N/A
11 (28.2)
13 (33.3)
8 (20.5)
5 (12.8)
2 (5.1)
21 (28.8)
27 (37.0)
15 (20.5)
7 (9.6)
3 (4.1)
3 (23.1)
3 (23.1)
6 (46.2)
0 (0.0)
1 (7.7)
OT
Very Satisfied
Somewhat Satisfied
Very Dissatisfied
N/A
7 (19.4)
15 (41.7)
4 (11.1)
5 (13.9)
5 (13.9)
19 (23.2)
36 (43.9)
16 (19.5)
8 (9.8)
3 (3.7)
1 (10.0)
3 (30.0)
4 (40.0)
1 (10.0)
1 (10.0)
Physiotherapy
Very Satisfied
Somewhat Satisfied
Very Dissatisfied
3 (30.0)
4 (40.0)
1 (10.0)
2 (20.0)
2 (9.5)
14 (66.7)
3 (14.3)
2 (9.5)
1 (33.3)
0 (0.0)
2 (66.7)
0 (0.0)
Family Doctor
Very Satisfied
Somewhat Satisfied
Very Dissatisfied
13 (40.6)
14 (43.8)
3 (9.4)
2 (6.3)
27 (32.9)
45 (54.9)
8 (9.8)
2 (2.4)
6 (25.0)
14 (58.3)
3 (12.5)
1 (4.2)
Psychiatrist
Very Satisfied
Somewhat Satisfied
Very Dissatisfied
0 (0.0)
0 (0.0)
0 (0.0)
0 (0.0)
6 (26.1)
6 (26.1)
5 (21.7)
6 (26.1)
3 (23.1)
4 (30.8)
4 (30.8)
2 (15.4)
ABA
Very Satisfied
Somewhat Satisfied
Very Dissatisfied
20 (55.6)
11 (30.6)
2 (5.6)
3 (8.3)
21 (38.2)
26 (47.3)
4 (7.3)
4 (7.3)
4 (66.7)
2 (33.0)
0 (0.0)
0 (0.0)
Respite
Very Satisfied
Somewhat Satisfied
Very Dissatisfied
0
0
0
0
5 (38.5)
1 (7.7)
4 (30.8)
3 (23.1)
3 (25.0)
4 (33.3)
1 (8.3)
4 (33.3)
SERVICE
Satisfaction with Services
Page 52
The majority of respondents reported less than a 30 minute commute to all services.
However, there were respondents who reported having to travel more than two hours
to gain access. NL is geographically very large with many rural communities. When
we break down the commute by geographic region, as seen in Table 4-10, we observe
most respondents who reported a long commute reside in the Eastern, South Central,
and Western regions of the province. Within these three regions, there are many
rural and remote communities. Therefore, it is not surprising that longer commutes
to services exist (refer to Figure 4-2 for Map of Regions of Newfoundland Labrador).
The Eastern Region includes communities such as Port Blandford, Southern Bay, and
Marystown. The South Central Region includes communities such as Joe Batt’s Arm,
Twillingate, and Grand Falls-Windsor. The Western Region includes communities such
as Stephenville, Rocky Harbour, and St. Anthony. The Avalon and Northeast Avalon are
the most population dense regions and thus they are more service dense. We would
not expect to see long commutes to services in these regions.
Page 53
TABLE 4-10: Commute Time to Health Services Broken Downy by Geographic Region
AVALON
NORTH
EAST
AVALON
EASTERN
SOUTH
CENTRAL
WESTERN
LABRADOR
Speech Therapy
<30 minutes
30-60 minutes
1-2 hours
>2 hours
FIGURE 4-2: Region Breakdown In Newfoundland And Labrador
19 (73.1)
6 (23.1)
1 (3.8)
0 (0.0)
26 (83.9)
3 (9.7)
2 (6.5)
0 (0.0)
15 (71.4)
5 (23.8)
0 (0.0)
1 (4.8)
3 (42.9)
1 (14.3)
2 (28.6)
1 (14.3)
15 (75.0)
3 (15.0)
0 (0.0)
2 (10.0)
1 (50.0)
1 (50.0)
0 (0.0)
0 (0.0)
18 (64.3)
8 (28.6)
2 (7.1)
0 (0.0)
26 (81.3)
3 (9.4)
3 (9.4)
0 (0.0)
5 (27.8)
0 (0.0)
2 (11.1)
11 (61.1)
3 (37.5)
1 (12.5)
2 (25.0)
2 (25.0)
11 (55.0)
6 (30.0)
0 (0.0)
3 (15.0)
1 (50.0)
0 (0.0)
0 (0.0)
1 (50.0)
6 (50.0)
4 (33.3)
1 (8.3)
1 (8.3)
14 (77.8)
2 (11.1)
2 (11.1)
0 (0.0)
3 (27.3)
0 (0.0)
1 (9.1)
7 (63.6)
1 (25.0)
1 (25.0)
2 (50.0)
0 (0.0)
4 (44.4)
3 (33.3)
1 (11.1)
1 (11.1)
1 (100)
0 (0.0)
0 (0.0)
0 (0.0)
9 (60.0)
3 (20.0)
3 (20.0)
0 (0.0)
20 (80.0)
3 (12.0)
2 (8.0)
0 (0.0)
2 (20.0)
1 (10.0)
2 (20.0)
5 (50.0)
2 (28.6)
0 (0.0)
1 (14.3)
4 (57.1)
3 (42.9)
0 (0.0)
1 (14.3)
3 (42.9)
0 (0.0)
0 (0.0)
0 (0.0)
1 (100)
17 (81.0)
4 (19.0)
0 (0.0)
0 (0.0)
11 (84.6)
2 (15.4)
0 (0.0)
0 (0.0)
11 (73.3)
4 (26.7)
0 (0.0)
0 (0.0)
2 (100)
0 (0.0)
0 (0.0)
0 (0.0)
4 (80.0)
1 (20.0)
0 (0.0)
0 (0.0)
0 (0.0)
0 (0.0)
0 (0.0)
1 (100)
WESTERN
REGION
LABRADOR
REGION
OT
<30 minutes
30-60 minutes
1-2 hours
>2 hours
CENTRAL
REGION
EASTERN
REGION
Physiotherapy
<30 minutes
30-60 minutes
1-2 hours
>2 hours
AVALON
REGION
Psychiatry
<30 minutes
30-60 minutes
1-2 hours
>2 hours
ABA
<30 minutes
30-60 minutes
1-2 hours
>2 hours
Respite
<30 minutes
30-60 minutes
1-2 hours
>2 hours
7 (87.5)
1 (12.5)
0 (0.0)
0 (0.0)
11 (84.6)
2 (15.4)
0 (0.0)
0 (0.0)
6 (85.7)
0 (0.0)
0 (0.0)
1 (14.3)
1 (100)
0 (0.0)
0 (0.0)
0 (0.0)
4 (80.0)
1 (20.0)
0 (0.0)
0 (0.0)
1 (100)
0 (0.0)
0 (0.0)
0 (0.0)
Caregivers in Eastern, South Central, and Western regions experienced long
commutes of over two hours to access services such as speech language therapy, OT,
physician, and psychiatry. Caregivers did not report having to travel great distances to
receive ABA and respite services.
Page 54
There was little mention of travel time to access services from interviewees. One
caregiver from rural NL described having to travel to the nearest urban community
every year for appointments, but did not describe it as a barrier to service or a burden.
Another participant was pleased with the reimbursement for travel offered by the
government and said it helped overcome barriers to services.
(c) Education Services and Training
Of caregivers surveyed, 62.2% reported their child having difficulties when entering
preschool. These were associated with anxiety related to change, a new environment,
sensory issues, inclusion issues and transition issues. The majority of caregivers were
not provided with an inclusion consultant when entering the school system.
Furthermore, 58% of caregivers did not believe that educators had adequate
training in ASD and that teachers had difficulties managing children with ASD in
the kindergarten environment. Most reported being somewhat satisfied (41%) or
somewhat dissatisfied (38%) with their kindergarten experience. Bullying was not a
concern at this age.
Page 55
Caregivers of adults were likely to be more dissatisfied with the level of training in
educators during kindergarten. Of the caregivers for adults with ASD, 70.8% said they
did not feel educators were well trained.
TABLE 4-11: Caregiver Responses to Their Child’s Kindergarten Experience
KINDERGARTEN
EXPERIENCE
TOTAL
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
As expected, caregivers avail of a variety of school services. Most commonly
accessed services included the Individualized Student Support Plan (ISSP), alternate
courses, and student assistants. The caregivers who accessed school services
rated their overall satisfaction as either somewhat satisfied (55%) or somewhat
dissatisfied (24%). 63.2% of caregivers of adults had issues with accommodations
in school, and 56% of caregivers of school age children reported having issues with
accommodations throughout the school system.
Bullying was reported more commonly in grade school (30%) compared to the
preschool environment. Bullying is pervasive from K-12, particularly as children leave
elementary school (Grades 4-6) and enter into their high school years (Grades 7-12).
Difficulties Entering Kindergarten
Yes
92 (62.2)
13 (61.9)
67 (66.3)
12 (46.2)
No
56 (37.8)
8 (38.1)
34 (33.7)
14 (53.8)
Inclusion Consultant Provided
Yes
42 (28.4)
8 (34.8)
31 (30.7)
3 (12.5)
No
82 (55.4)
8 (34.8)
56 (55.4)
18 (75.0)
Not Sure
24 (16.2)
7 (30.4)
14 (13.9)
3 (12.5)
Yes
28 (19.3)
6 (28.6)
19 (19.0)
3 (12.5)
No
84 (57.9)
10 (47.6)
57 (57.0)
17 (70.8)
Not Sure
33 (22.8)
5 (23.8)
24 (24.0)
4 (16.7)
Only 12.6% of caregivers reported receiving counselling through school despite the
high number of individuals reporting mental health issues. While 45.7% of caregivers
reported availing of student assistants, only 9.4% of these were preschool age.
Educators Well Trained
Satisfied with Kindergarten Experience
Very satisfied
12 (9.0)
2 (10.0)
10 (11.1)
0 (0.0)
Somewhat satisfied
55 (41.4)
9 (45.0)
34 (37.8)
12 (52.2)
50 (37.6)
6 (30.0)
37 (41.1)
7 (30.4)
Very dissatisfied
16 (12.0)
3 (15.0)
9 (10.0)
4 (17.4)
Yes
33 (22.1)
2 (9.5)
21 (21.0)
10 (40.0)
No
92 (61.7)
15 (71.4)
65 (65.0)
12 (48.0)
Not Sure
21 (14.1)
4 (19.0)
14 (14.0)
3 (12.0)
Bullying in Kindergarten
Caregivers primarily reported that their children were in school full-time (77.8%);
however, some caregivers reported partial day schooling (20.1%) and home schooling
(2%). However, caregivers of adults reported that 84% had attended school
only part-time. When asked about school board policies relating to children with
exceptionalities, less than half (47.8%) of caregiver respondents reported being aware
of them.
Page 56
Page 57
TABLE 4-12: Caregiver Responses to Their Child’s Grade School Experience
TOTAL
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
Full time
112 (77.8)
8 (80.0)
100 (91.7)
4 (16.0)
Home School
3 (2.1)
0 (0.0)
3 (2.7)
0 (0.0)
Part-Time
29 (20.1)
2 (20.0)
6 (5.5)
21 (84.0)
GRADE SCHOOL
EXPERIENCE
Type of Schooling
Aware of School Board Policies
Yes
68 (47.9)
5 (50.0)
53 (49.0)
10 (41.7)
No
74 (52.1)
5 (50.0)
55 (50.9)
14 (59.3)
Received the following services through school
ISSP
132 (52.0)
9 (14.1)
102 (71.3)
21 (44.7)
Alternate Courses
92 (36.2)
3 (4.7)
72 (50.3)
17 (36.2)
Student Assistant
116 (45.7)
6 (9.4)
91 (63.6)
19 (40.4)
Counselling
32 (12.6)
0 (0.0)
22 (15.4)
10 (21.3)
Functional Curriculum
32 (12.6)
0 (0.0)
25 (17.5)
7 (14.9)
Speech Therapy
82 (32.3)
6 (9.4)
65 (45.5)
11 (23.4)
IRT
76 (29.9)
4 (6.3)
65 (45.5)
7 (14.9)
Other
11 (4.3)
3 (4.7)
7 (4.9)
1 (2.1)
No Services
4 (1.6)
0 (0.0)
2 (1.4)
2 (4.3)
Satisfaction with Received Services
Very satisfied
9 (6.6)
1 (11.1)
6 (5.7)
2 (9.1)
Somewhat satisfied
77 (56.6)
5 (55.6)
59 (56.2)
13 (59.1)
34 (25.0)
2 (22.2)
26 (24.8)
6 (27.3)
Very dissatisfied
16 (11.8)
1 (11.1)
14 (13.3)
1 (4.5)
Considerable feedback on the education system was provided in the caregiver
interviews. Many caregivers believed there was a lack of communication between the
health and education system. They also believed OT should be part of the education
system.
Caregivers reported being satisfied with the support that educators provided to
children entering a new school environment. Several caregivers described teachers
who allowed ASD students to visit prior to the start of classes to examine the school
setting. This resulted in much higher success for the children in question.
The need for more professional development and education surrounding ASD in the
classroom was another common theme. Much was said about teachers who went
above and beyond with their limited knowledge of ASD, but caregivers wanted to
see more education and training throughout the education system. Another issue
was frustration with overall lack of consistency with student assistants assigned to
children. Caregivers said the irregularity was detrimental to their children’s education.
Additionally, life skills training to assist with preparing high school students for
employment opportunities was discussed at length. Caregivers wanted to ensure that
proper transition planning occurred as children moved out of the education system.
(d) Adult Services
Table 4-13 shows 92% of caregivers of adults with ASD reported their child living at
home. This was high compared to the CASDA Report, where 80% of caregivers of
adults with ASD reported their child living at home. More caregivers reported their
child living independently (6.8%) in CASDA’s national study (2014) compared to the NL
study (0%). When caregivers were asked about their child’s community involvement
(Figure 4-3), the highest numbers were found in ASNL programming, recreational
programming, and other. “Other” was reported as music groups, Special Olympics, and
art groups.
Issues with Accommodations in School
Yes
59 (43.7)
5 (50.0)
42 (39.6)
12 (63.2)
No
76 (56.3)
5 (50.0)
64 (60.4)
7 (36.8)
Issues with Bullying in Grade School
Yes
26 (30.2)
2 (22.2)
19 (32.2)
5 (27.8)
No
41 (47.7)
5 (55.6)
25 (42.4)
11 (61.1)
Not Sure
19 (22.1)
2 (22.2)
15 (25.4)
2 (11.1)
Page 58
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TABLE 4-13: Living Arrangement for Adults With ASD
TABLE 4-14: Mental and Physical Challenges Compared to CASDA
LIVING ARRANGEMENT
NL NEEDS ASSESSMENT
CASDA
MENTAL OR PHYSICAL CHALLENGE
NL NEEDS ASSESSMENT
CASDA
At Home
92%
80%
ADHD
83%
35%
Provincial Supportive Housing
5%
7.6%
Anxiety
64%
71%
Independently
0%
6.8%
Depression
26%
33%
With Relative
0%
1.3%*
Behavioural issues
64%
55%
Other
3%
4.3%
Intellectual disability
34%
65%
Sleep problems
34%
39.1%
Epilepsy
23%
18.9%
Asthma
14.9%
15.7%
Bone/Joint/Muscle Problems
14.9%
15.4%
Diabetes
4.3%
3%
When asked about difficulties accessing services, a majority of caregivers did not
identify issues. However, there were some individuals who did have challenges.
Supportive employment was discussed at length. Development of programming
that stems from life skills training across ABA and school is necessary. Furthermore,
development of community partnerships through cooperative programs in high school
could help with transition from school into adulthood.
Mental and physical health issues were highly correlated with co-morbidities in adults
with ASD. Table 4-14 compares our results with the results of the CASDA Report
(2014). Two significant differences were reported across the data. First, our report
found ADHD (83%) was more prevalent among individuals with ASD in Newfoundland
Labrador, compared to national data of 35%. Second, CASDA reported a significantly
higher rate of intellectual disability (65%), compared to NL (34%).
When asked about accessing services in the past six months, most caregivers stated
that their child had seen their family physician and reported high levels of satisfaction.
For services accessed, respite care was the only service with an overall rating of
dissatisfaction.
FIGURE 4-3: Community Involvement - Adults With ASD
20
15
10
5
0
Page 60
ASNL
Programming
Recreational
Programming
Volunteerism
Employment
Hobby
Acitivities
Other
Page 61
When caregivers of adults with ASD were asked if they had difficulties accessing
any healthcare services, most expressed minimal difficulties. Services that were
challenging to access included those from a counsellor/psychologist (19.1%) and a
psychiatrist (14.9%).
FIGURE 4-4: Difficulty in Accessing Any Primary Healthcare Services as an Adult
Counsellor/
Psychologist
(19.1%)
Psychiatrist
(14.9%)
Family
Physician
(8.5%)
Dentist
(10.6%)
Optometrist
(6.8%)
Specialist
(4.3%)
Mental illness stood out as an overwhelming concern. Particularly troubling was the
high incidence of mental illness combined with reported challenges of accessing
services of mental health professionals like psychologists and psychiatrists. Evidence
suggests these services are tremendously valuable for adults with ASD. Therefore,
better access to services must be made available.
Caregivers were asked to rate their satisfaction with any services they availed of in the
previous six months. The following are average ratings of satisfaction for services:
• Occupational Therapy (100%)
• Life Skills Training (77%)
• Physiotherapy (92%)
• Psychiatry (75%)
• Family Doctor (83%)
• Respite (66%)
(e) Insurance and Finances
Caregivers of preschoolers were most often unemployed or working full-time,
perhaps because one parent may leave work to raise children during their early years,
particularly after an ASD diagnosis. Caregivers of school-age children primarily worked
full-time. Of the caregivers of school-aged children, 26.7% reported working part
time; this was commonly explained by the burden placed on families following an ASD
diagnosis. Caregivers of adults were more likely to be retired. Partners’ employment
status was primarily full-time across all age categories. Nearly half of respondents
(49%) reported a change in employment following the diagnosis of ASD in their
family. Most notably, 75% of preschooler caregivers reported a change in employment
following ASD diagnosis.
The median average household income was between $50,000 - $74,999. Of caregivers
surveyed, half (49%) reported having financial difficulties following the diagnosis
process. A high percentage of caregivers (58%) reported having to pay out of pocket for
services. 61.8% of individuals paying out of pocket found it to be a significant expense.
Comparably, 52.2% of respondents from the national CASDA Report said they struggled
to afford services and 31.6% said they were unable to afford services (2014).
• Mental Health Treatment (78%)
When caregivers of adults with ASD were asked about barriers they encountered, the
following responses were given:
• Feeling tied down at home; both parents have to lead separate social lives to
ensure someone is always home;
• Not enough programming is available for adults with ASD;
• Not sure how to support child;
• No supportive housing options available;
• Difficulties getting supportive employment;
• IQ 70 Criterion; and
• Uncertainty for the future.
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TABLE 4-15: Caregiver Financial and Insurance Information
FINANCIAL AND
INSURANCE
INFORMATION
TOTAL
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
Parent Employment Status
Full-time
78 (46.4)
17 (39.5)
46 (63.9)
15 (28.3)
Part-time
26 (15.5)
4 (9.3)
19 (26.4)
3 (5.7)
Retired
11 (6.5)
1 (2.3)
4 (5.6)
6 (11.3)
Unemployed
53 (31.5)
21 (48.8)
3 (4.2)
29 (54.7)
Partners Employment Status
Full-time
104 (75.9)
29 (82.9)
61 (85.9)
14 (45.1)
Part-time
15 (10.9)
5 (14.3)
2 (2.8)
8 (25.9)
Retired
8 (5.8)
0 (0.0)
7 (9.9)
1 (3.2)
Unemployed
10 (7.3)
1 (2.9)
1 (1.4)
8 (25.9)
<$24,999
27 (17.8)
9 (20.9)
0 (0.0)
18 (42.9)
$25,000-$49,999
25 (16.4)
9 (20.9)
12 (16.7)
4 (9.5)
$50,000-$74,999
28 (18.4)
6 (14.0)
20 (27.8)
2 (4.8)
$75,000-$99,999
22 (14.5)
7 (16.3)
10 (13.9)
5 (11.9)
$100-$149,999
24 (15.8)
4 (9.3)
17 (23.6)
8 (19.0)
>$150,000
26 (17.1)
8 (18.6)
13 (18.1)
5 (11.9)
Household Income
Employment changed after child’s diagnosis
Yes
81 (48.8)
24 (75.0)
45 (46.4)
12 (44.4)
No
85 (51.2)
18 (25.0)
52 (53.6)
15 (55.6)
FINANCIAL AND
INSURANCE
INFORMATION
TOTAL
N (%)
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEARS)
N (%)
Consider these significant expense
Yes
96 (61.9)
28 (65.1)
53 (61.6)
15 (57.7)
Sometimes
29 (18.7)
7 (16.3)
18 (20.9)
4 (15.4)
No
17 (11.0)
2 (4.7)
9 (10.5)
6 (23.1)
Not Sure
13 (8.4)
6 (14.0)
6 (7.0)
1 (3.8)
Yes
121 (73.8)
29 (67.4)
75 (78.1)
17 (68.0)
No
43 (26.2)
14 (32.6)
21 (21.9)
8 (32.0)
Have insurance coverage
Availed of the following as private services
Speech Therapy
57 (22.4)
18 (28.1)
33 (23.1)
6 (12.8)
41 (16.1)
11 (17.2)
27 (18.9)
3 (6.4)
Physiotherapy
10 (3.9)
1 (1.6)
4 (2.8)
5 (10.6)
Psychology
29 (11.4)
3 (4.7)
18 (12.6)
8 (17.0)
Other*
33 (13.0)
8 (12.5)
15 (10.5)
10 (21.3)
* ABA, family therapy, music therapy, naturopathy, pediatrician, respite
Of caregiver respondents, 74% reported having health insurance and availing of private
services such as speech language pathology and occupational therapy. Western Region had a
significantly lower rate of insurance coverage at only 4.5%. On average, when caregivers were
asked to report their satisfaction with private services, they were rated as very satisfied and
somewhat satisfied.
Average satisfaction rating percentages for services are shown in Table 4-16.
Any financial difficulties following diagnosis
Yes
82 (48.8)
20 (57.1)
47 (46.4)
15 (44.4)
No
84 (51.2)
22 (42.9)
50 (53.6)
12 (55.6)
Paid out of Pocket for Services
Yes*
97 (58.4)
23 (53.5)
56 (58.3)
18 (66.7)
No
69 (41.6)
20 (46.5)
40 (41.7)
9 (33.3)
*ABA, chiropractor, Mental health services, daycare, music therapy, OT, respite, speech therapy
Page 64
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TABLE 4-16: Satisfaction Rating Percentages for Private Services
TABLE 4-17: Caregiver Financial and Insurance Information by Region
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS) %
CAREGIVERS
OF ADULTS
(18+ YEARS) %
SATISFACTION
RATING
TOTAL %
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS) %
Speech Therapy
83.9%
82.9%
87.2%
67.9%
Parent Employment Status
OT
72.8%
73.1%
72.4%
75.0%
Fulltime
20 (48.8)
31 (54.4)
Physiotherapy
75.0%
66.7%
75.0%
80.0%
Part-time
5 (12.2)
Psychology
68.1%
100.0%
66.7%
63.8%
Retired
Other
91.7%
100.0%
83.3%
93.8%
Unemployed
SOUTH
CENTRAL
N (%)
WESTERN
N (%)
7 (29.2)
4 (26.7)
14 (50.0)
1 (33.3)
11 (19.3)
6 (25.0)
1 (6.7)
2 (7.1)
1 (33.3)
1 (2.4)
7 (12.3)
0 (0.0)
0 (0.0)
2 (7.1)
1 (33.3)
15 (26.6)
8 (14.0)
11 (45.6)
9 (60.0)
10 (35.6)
0 (0.0)
AVALON
N (%)
NORTH EAST
AVALON
EASTERN
N (%)
N (%)
LABRADOR
N (%)
Partner Employment Status
When we examine caregiver financial and insurance information (Table 4-17), the data
show that lower percentages of caregivers were employed full-time in the Eastern
(29.2%) and South Central (26.7%) regions. The same was true for caregivers’ partners’
employment in the Eastern Region (59.1%). Of interest, caregivers in the South Central
Region reported the least amount of change after their child’s diagnosis (30.1%). The
majority of caregivers reported financial difficulties following their child’s diagnosis,
particularly in the Avalon (69.2%) and Labrador (66.7%) regions. Caregivers from the
Western region were the least likely to have paid out of pocket for services (29.6%).
There was no distinction between regions when caregivers were asked about financial
burden. Overwhelmingly, parents felt costs associated with ASD were significant.
Fulltime
27 (74.4)
40 (83.3)
13 (59.1)
9 (75.0)
15 (79.0)
1 (11.1)
Part-time
4 (11.8)
4 (8.3)
4 (18.2)
2 (16.7)
1 (5.3)
0 (0.0)
Retired
1 (2.9)
2 (4.2)
2 (9.1)
0 (0.0)
1 (5.3)
2 (22.2)
Unemployed
2 (5.9)
2 (4.2)
3 (13.6)
1 (8.3)
2 (10.6)
6 (66.6)
Employment changed after child’s diagnosis
Yes
17 (43.6)
30 (52.6)
11 (30.1)
8 (57.1)
13 (46.4)
3 (100.0)
No
22 (42.6)
27 (47.4)
15 (69.4)
6 (42.9)
15 (53.6)
0 (0.0)
Any financial difficulties following diagnosis
Yes
22 (69.2)
29 (50.9)
14 (53.9)
4 (28.6)
12 (42.9)
2 (66.7)
No
17 (30.1)
28 (49.1)
12 (46.2)
10 (71.4)
16 (57.1)
1 (33.3)
Paid out of pocket
Yes
27 (69.2)
43 (74.1)
14 (53.9)
6 (42.9)
8 (29.6)
6 (66.7)
No
12 (30.8)
15 (25.9)
12 (46.2)
8 (57.1)
19 (70.4)
3 (33.3)
Consider these significant expense
Yes
36 (80.0)
36 (63.2)
10 (43.5)
9 (75.0)
12 (52.2)
0 (0.0)
Sometimes
6 (13.3)
11 (19.3)
7 (30.4)
0 (0.0)
4 (17.4)
1 (50.0)
No
3 (6.7)
3 (5.3)
2 (8.9)
1 (8.3)
4 (17.4)
0 (0.0)
Not Sure
0 (0.0)
7 (12.2)
4 (17.4)
2 (16.7)
3 (13.0)
1 (50.0)
Have insurance coverage
Page 66
Yes
14 (41.2)
29 (60.4)
6 (31.6)
4 (50.0)
1 (4.5)
1 (33.3)
No
20 (58.8)
19 (39.6)
13 (68.4)
4 (50.0)
21 (95.5)
2 (66.7)
Page 67
Many caregivers reported that their child was too young for employment. Nearly two
thirds (65%) of caregivers of adults with ASD reported their children as being either
employed (25%) or taking part in supportive employment opportunities (35.7%).
However, only 24% of all caregiver respondents reported having a transition plan for
their child. Caregivers of preschoolers were not likely at a point in their lives where
transition planning was a priority. Caregivers of younger school age children (ages
5-11) were also not likely yet considering transition planning. According to “Autism
Speaks” (2015), transition planning should begin at 14 years of age. Therefore, we
would expect a higher incidence of transition planning from older school age children
and adults. Despite this, just 52% of caregivers of adults reported having a transition
plan.
Caregivers interviewed also expressed concerns regarding transitions (Table 4-18).
They felt lost when it came to planning for their child’s future; they felt the burden
of limited opportunities. Transition planning should be focused on improving the
individual’s academic and functional abilities in an effort to ease the transition from
school to post-school undertakings. These endeavours may include postsecondary
education, continuing and adult education, vocational education, employment,
supportive employment, adult services, independent living, and/or community
participation.
For caregivers who reported having a transition plan, educators, physicians,
paediatricians, and consultants were involved. Most caregivers (64%) felt that service
providers were well trained to deal with transitions for individuals with ASD. Almost
two thirds (61%) of caregivers were unaware of the IQ 70 criterion.
TABLE 4-18: Transition Planning
TRANSITION
PLANNING
TOTAL
N (%)
CAREGIVERS OF
CHILDREN UP TO
5 YEARS N (%)
CAREGIVERS OF
CHILDREN 6-17
YEARS N (%)
CAREGIVERS OF
ADULTS 18+ N (%)
Transition Plan in Place
Yes
35 (24.3)
3 (7.9)
22 (25.3)
10 (52.6)
No
109 (75.7)
35 (92.1)
65 (74.7)
9 (47.4)
Who was Involved in Transition Planning
Family Doctor
9 (16.1)
1 (10.0)
3 (9.1)
5 (38.5)
Educator
18 (14.2)
2 (20.0)
13 (39.4)
3 (23.1)
Speech
Therapy
7 (12.5)
3 (30.0)
4 (12.1)
0 (0.0)
Occupational
Therapy
6 (10.7)
3 (30.0)
3 (9.1)
0 (0.0)
Other*
16 (28.6)
1 (10.0)
10 (30.3)
5 (38.5)
Service Providers Knowledgeable about Transitions
Yes
30 (63.8)
5 (62.5)
19 (73.1)
6 (46.2)
No
17 (36.2)
3 (37.5)
7 (26.9)
7 (53.8)
Aware of IQ 70 Rule
Yes
57 (39.3)
6 (18.2)
31 (36.5)
20 (74.1)
No
88 (60.7)
27 (81.8)
54 (63.5)
7 (25.9)
When interviewed, caregivers were asked whether they received any supports from
the government. Many caregivers took advantage of the Registered Disability Savings
Plan (RDSP), while a small number availed of subsidies and programming. Some
caregivers asserted that they were not qualified for any such supports because of
their income levels.
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Suggestions for Improvements
(f) Autism Society NL
Each caregiver was asked to describe three improvements they would like to see.
These key themes emerged from the transcripts:
As seen in Table 4-19, the majority of caregivers, 64%, reported being members of
ASNL. For those who were not members, their reasons included: not being aware of
ASNL (26%); not enough time to be a member (12%); ASNL not providing the services
needed (18%). An additional 45% responded “other” reasons, which included the
following:
• Professional Development and Training;
`` Professional development for current educators in the system
`` Professional development for new educators entering the system
• Distance too far to travel to regional office;
`` Training for student assistants
• Unsure about how to become a member;
`` Educational resources for caregivers and service providers
`` Training for healthcare providers, specifically family physicians, on
recognizing ASD
• Improved communication and collaboration between health and education;
• Clear guidelines to help navigate the system of supports and services;
• Removal of the IQ 70 Criterion, or addition of an adaptive function measure;
• Child was just recently diagnosed; and
• Planning to become a member, but have not had time.
26% of caregivers were not aware of ASNL. Of caregivers surveyed, 89% were aware
of the programs and services through ASNL and 85% reported having used ASNL
programs or services at some point. Caregivers who reported using ASNL services
or programs said that they “occasionally” (34%) used the services or accessed them
weekly (31%).
• Improved transitional services;
`` Within the school system
`` Exiting the school system
• Enhanced supportive employment opportunities;
• Increased programming from ASNL province-wide, available to all;
• Extended services (ABA beyond Grade 3, more programming for adults); and
• Focus on early intervention, including:
`` Shorter wait times for referral
`` Shorter wait times for actual diagnosis
`` Shorter wait times for follow-up intervention services.
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TABLE 4-19: ASNL Membership and Service Use
ASNL MEMBERSHIP
AND SERVICE USE
TOTAL
N (%)
However, South Central and Western regions do have a high number of respondents
accessing their outreach services.
CAREGIVERS OF
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
CAREGIVERS
OF SCHOOL
AGE CHILDREN
(6-17 YEARS)
N (%)
CAREGIVERS
OF ADULTS
(18+ YEAR)
N (%)
Despite a usage of just some programs and services, the majority of caregivers using
ASNL services reported being very satisfied or somewhat satisfied with the programs.
An overall satisfaction rating was calculated and the following was observed:
• Family Consultation (82.1%);
ASNL Member
Yes
138 (64)
27 (49.1)
81 (65.3)
30 (83.3)
• ASNL Library Resources (82.1%);
No
77 (36)
28 (50.9)
43 (34.7)
6 (16.7)
• Parent Support Groups (82.0%);
Reason for not being a member
Was not aware of ASNL
20 (26)
7 (24.1)
11 (36.7)
2 (10.5)
Do not have time to be
a member
9 (12)
5 (17.2)
4 (13.3)
0 (0.0)
Not interested in being
a member
(0) 0
0 (0.0)
0 (0.0)
0 (0.0)
Does not provide what
I need
14 (18)
2 (6.9)
11 (36.7)
1 (5.3)
Other
35 (45)
15 (51.7)
4 (13.3)
16 (82.4)
Aware of ASNL programs and Services
Yes
179 (84.4)
40 (75.5)
108 (87.8)
31 (88.6)
No
32 (15.6)
13 (24.5)
15 (12.2)
4 (11.4)
Ever used ASNL Programs or Services
Yes
179 (84.4)
40 (75.5)
108 (87.8)
31 (88.6)
No
32 (15.6)
13 (24.5)
15 (12.2)
4 (11.4)
• TEACCH (79.7%);
• Assistive Technology (75.0%); and
• Other (91.4%).
The Assistive Technology Program has a lower overall rating (75.0%) compared to the
other programs offered through ASNL. Those who reported under the ‘Other’ section
were the most satisfied. ‘Other’ included: Social Thinking, Connections, Art Therapy,
Drop In Play Group, Social Club, Gym Champs, Music Therapy, and Summer Camp.
When caregivers were asked to report what they believed should be the highest
priority for the ASNL, the most common response was additional programming (43%).
See Figure 4-6 for the distribution priorities for ASNL and Figure 4-7 for distribution
totals broken down by age group.
FIGURE 4-5: Access and Satisfaction of ASNL by Region
If accessed, how often were ASNL services used
Weekly
41 (31.7)
2 (10.5)
TEACCH
27 (31.0)
12 (51.2)
Family Consultation
80
Monthly
7 (5.4)
2 (10.5)
3 (3.4)
2 (8.7)
70
Occasionally
44 (34.1)
10 (52.6)
30 (34.5)
4 (17.4)
60
Not at all
37 (28.6)
5 (26.3)
27 (31.0)
5 (21.7)
50
ASNL Library Resources
Parent Support Groups
Assisted Technology
Other
40
30
The most commonly accessed ASNL services were Library Resources and Parent
Support Groups. Other identified services included Social Club, Summer Camp, Art
and Music Therapy, and Information Accessibility (Outreach). Caregivers of schoolaged children most frequently used ASNL programming and figure 4-5 details the
distribution of users across the province. While ASNL programs were accessed across
the province, primary usage was within the Avalon and Northeast Avalon regions.
Page 72
20
10
0
Avalon
North East Avalon
Eastern
South Central
Western
Labrador
Page 73
FIGURE 4-6: Caregivers Priority for the Role of ASNL
7%
Adults (18 Years and Older)
Research
13%
Programs
12%
Family Support
Family Support
17%
13%
21%
Advocacy
Research
4%
Advocacy
0%
Programs
70%
Professional Development and Training
43%
FIGURE 4-7: Priority of the Role of ASNL Broken Down by Age Group
Pre-Schoolers
6%
Programs
18%
Advocacy
Professional Development
and Training
Research
30
Programs
25
29%
Research
Family Support
20
Advocacy
15
18%
10
Children (6-17 Years Old)
4%
FIGURE 4-8: Priority of Role of ASNL by Geographic Region
35
Family Support
29%
When analyzed by region, programming remained the highest priority for the Avalon,
Northeast Avalon, Eastern, and Labrador regions. Family support, or outreach, was most
frequently ranked as first priority for the South Central and Western regions (Figure 4-8).
0
Programs
11%
Family Support
22%
Advocacy
56%
7%
5
Research
Avalon
Northeast
Avalon
Eastern
South
Central
Western
Labrador
When divided into age categories, programming retained the highest first ranking
among caregivers of preschool age and school-aged children. Caregivers of adults with
ASD rated research as their top priority for ASNL.
When asked how ASNL could improve services, the following suggestions were made:
• Enhance programming available for children;
• Improve services to rural communities;
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• Help transition individuals with ASD from childhood to adulthood;
• Make more resources available for non-verbal children;
• Create more programs, activities and supports to assist high functioning kids who
are trying to fit in the mainstream;
• Offer more availability for school-aged children so they can avail of the programs;
• Increase consultation and training for families;
• Hire people who are trained, or train the people you hire;
• Raise more awareness of ASD in the public;
• Focus on employment opportunities and training for individuals with ASD;
• Increase training and services in the area of mental health;
• Help with navigating the system for families/caregivers with newly diagnosed individuals; and
• Focus on early childhood intervention and access to supports.
Caregiver Interviews
When interviewees were asked to discuss ASNL, some criticisms were voiced:
• ASNL did not provide enough services outside the Avalon Region;
• ASNL should be responsible for helping to diminish barriers to services in rural
communities;
• ASNL services were not promoted enough; many caregivers of children; with ASD
were not familiar with services offered by ASNL;
• Money invested into ASNL should be directed into programs for children that will
help with long-term skill acquisition; and
• ASNL did not offer enough services for preschoolers.
When caregivers were asked what they wanted from ASNL, they responded:
• More social interaction programming;
• More programming for adults with ASD;
• More advocacy for government supports and services; and
• Help caregivers navigate the system.
Page 76
Page 77
iv. Key Findings
KEY FINDINGS
DESCRIPTION
KEY STATISTICS OR QUOTES
1) Wait Times
Wait times for referral/
diagnosis of ASD were a
major concern for caregivers.
They recognized the positive
impacts of early intervention.
• 46.1% reported being dissatisfied with
referral wait time
PD and training for healthcare
providers and educators was
perceived as being weak
by caregivers. Increased
awareness is needed.
• 29.8% of healthcare providers not well
trained
Mental health was often
associated with ASD,
particularly in the adult cohort.
Better access to services and
care for dealing with comorbidities was discussed at
length.
• only 4.3% of caregivers reported
accessing mental health services
Caregivers listed barriers to
services: lack of resources,
trained professionals, and
finances.
• 48% reported not enough resources
5) Rural Services
and Supports
Caregivers outside the Avalon
and Northeast Avalon Regions
do not have the same access
to programming, services,
supports and outreach. This
is also true of school services
and supports.
“Remove the barriers of having to travel so far;
so I’d like to see the support system [improve]
obviously. We can’t spend every weekend with
ASNL, but it would be nice if you had at least
probably once a month, or maybe once per
week for an hour or two session, where you
could go in and have types of programming
available where you’re focusing on Autism”
6) Lack of
Consistency in
Student Assistants
Caregivers expressed concern
with the lack of consistency
in student assistants
assignments to children and
too frequent change during
the year.
• 45.7% of caregivers reported having
student assistants
7) Transition
Planning
Transition planning was lacking
throughout the education
system including: transitioning
into school, between grades,
between schools, and
exiting the school system.
Transitioning to adulthood
requires most attention.
• Only 24.3% of caregivers reported their
children having a transition plan in place
2) Training for
Professionals
3) Mental Health
Services
4) Access to Services
Page 78
• 46.4% were dissatisfied with wait time
for diagnosis
• 57.9% of educators not well trained in
ASD
• 23.9% of caregivers reporting child
having mental health issues
KEY FINDINGS
DESCRIPTION
8) Housing
Housing for adults was ASD
was a major concern for
caregivers.
• Caregivers of adults reported 92% of
them living at home
9) Programming
and Services
for all Ages
Caregivers discussed the
limited programming and
services options for particular
ages. After grade 3, services
diminish for with ASD and this
was a major concern.
“You know that’s very sad. It’s going to be
essentially, you know, as of right now at grade
3, at grade 3 all of a sudden you start losing,
right; and every year you just lose a little bit
more. So you know, that’s really, that’s really
the sad reality right now; is that transitions and
transitional services don’t really exist”
10) School
Accommodations
Parents discussed their child’s
experience with provision of
accommodations for their child
in the school system. Bullying
was also discussed as an issue
for grade school students.
• Nearly half (43.7%)of caregivers
surveyed reported issues with
accommodations.
11) Navigating
the System
Throughout the referral,
diagnosis and intervention
process, caregivers
expressed a general lack
of understanding of how to
navigate the system.
“I do think that there could be better packages
made up. That information like your initial
package [saying] welcome to the wide
wonderful world of autism here you go.
My son is seven, so as a parent of a lower
functioning child I’m thinking of his future which
is a struggle on a good day. Why isn’t there a
package that you could send me to say what’s
after ABA? What do I do now, or what’s out
there?”
12) ASNL
Caregivers who accessed
services regularly were
overall very satisfied with
the programs and services.
However, caregivers discussed
limited access in some
regions of the province and
limited availability of some
programming.
“I guess for programming and stuff, is just to
be, for the ASNL, for it to be more province-wide
and to be more accountable to what they’re
doing; and have the programming so that
everybody can avail.”
13) Supportive
Employment
Parents of adults with ASD
described the need for more
life skills training in school that
could lead to more supportive
employment opportunities for
individuals with ASD.
“While respite services and hours are approved,
[it is] very difficult to get a worker. As a young
adult with ASD, our focus for her would be
on employment, either part-time or full-time.
However,[it’s] extremely difficult to get supports,
a job coach, and employment opportunities.
Also, finding professionals in the area of mental
health with experience in autism has been very
challenging. Opportunities to develop social
skills, life skills, and pre-employment for adults
are very limited. Most of her time would be
spent with us as parents and any volunteering
or social/community involvement is with us.”
• 46.2% said mental health issues were
observed in adults
• 19% reported being too old for services
• qualitative commentary shows
consistency among these assistants is
an issue
Page 79
4.2 Self-Advocates
The interviews and survey responses of self-advocates are described in this section.
i. Self-Advocate Demographics
Just fourteen self-advocates participated in the survey. Twelve contributed survey
responses and two described their experiences through interviews. Due to the
relatively low response rate among self-advocates, there is limited capacity to
demarcate the data into sub groupings. If key differences across groups exist, they will
be described.
When individuals with ASD were asked about their housing arrangements, 50%
lived with family, 42% lived independently, and 8% received housing through
a funded program. Only 25% of self-advocates were responsible for paying for
their own housing arrangements; the rest were either funded through parents or
through government assistance. When asked about the greatest barriers to housing,
respondents commented that there are ‘limited choices’ and ‘the market is not
affordable’. General challenges with housing also included cooking, cleaning, and
hygiene.
FIGURE 4-11: Housing Arrangement for Self-Advocates
8%
Live with Family
FIGURE 4-9: Gender of Self-Advocates
Live Independently
50%
Housed Through a Program
42%
42%
Female
Male
58%
All self-advocates reported their marital status as “single.” Some reported having a
high school diploma (41%), a college diploma (25%), or a university undergraduate
degree (9%). But 25% had not graduated high school. All respondents all were 18
years of age or older.
When self-advocates were asked about their transportation, most reported having
others drive them (46%). Other means of transportation included driving themselves
(18%), public transportation (18%), and walking (9%).
FIGURE 4-12: Means of Transportation for Self-Advocates
9%
9%
FIGURE 4-10: Education of Self-Advocates
Drive myself
46%
No High School Diploma
25%
Undergraduate Degree
42%
18%
Public Transportation
Walk
Other
High School Diploma
18%
College Diploma
8%
Others drive me
25%
Page 80
Page 81
Self-advocates were predominantly unemployed (67%). Individuals that reported being
employed were full-time employees, seasonal employees, or part-time employees.
Two individuals that reported being unemployed indicated that it was by choice and
that they had previously held part-time jobs for several years. When individuals were
asked about having a job coach, only one individual reported availing of this service.
FIGURE 4-13: Employment Status of Self-Advocates
Discussion concentrated on the challenge of finding appropriate employment that was
respectful towards ASD sensory and social needs. Light, noise, and odour sensitivity
were among the difficulties associated with finding employment. Moreover, challenges
affiliated with body language and social cues were also discussed.
Stereotyping was also acknowledged as a barrier to employment. Prejudices and
misunderstanding about ASD in the workplace were experienced among selfadvocates.
Unemployed
17%
Full-Time Employment
8%
Part-time Employment
8%
Seasonal Employment
67%
It is important to note the length of employment for self-advocates. The length of time
for employment was not greater than one year. Furthermore, it often took a long time
for these individuals to find meaningful employment. One individual reported a more
three-year-long job search.
As discussed with caregivers, it is imperative that individuals with ASD have a solid
foundation to assist them as they transfer into adulthood, especially to develop the
skill sets required for employment. Compared to the CASDA Report (2014), our results
showed greater levels of unemployment. CASDA reported that one in three selfadvocates (33%) indicated they were not employed, while our results showed that two
in three (67%) were not employed.
The most common barrier that individuals discussed was difficulty disclosing their
ASD. This included how much information to disclose during their efforts to seek
employment as well as while employed. Additionally, disclosing individual capabilities
and character traits was also a challenge reported by self-advocates. Individuals with
ASD were concerned about admitting to challenges they faced with tasks in the work
place. All these concerns were associated with high turnover rates and increased
anxiety.
The majority of self-advocates reported living in the Avalon Region (50%), followed
by Northeast Avalon (34%), South Central (8%), and Labrador (8%). There was no
representation from the Eastern or Western Regions of the province.
FIGURE 4-14: Self-Advocates Broken Down by Region
0%
0%
Avalon
8%
8%
Northeast Avalon
34%
Eastern
South Central
Barriers to Employment
Self-advocates were asked to discuss barriers to employment for individuals with
ASD. Two respondents did not believe there were any barriers associated with ASD
and employment. However, others believed there were many hurdles associated with
finding a job.
Page 82
50%
Western
Labrador
Page 83
iii. Analysis
(b) Healthcare Services
(a) Referral and Diagnosis
The average age of diagnosis among self-advocates was 20 years old. Of selfadvocates surveyed, 56% reported receiving their referral for assessment from a
psychologist (Figure 4-15). When asked about wait times for referrals, self-advocates
indicated there was overall dissatisfaction with their referral wait time.
Co-morbidities with ASD are well documented in the literature; they were also
acknowledged in the self-advocates surveyed (Figure 4-17). Mental health issues were
prevalent in self-advocates, including anxiety, depression, psychosis/schizophrenia,
OCD, and ADHD. The CASDA Report indicated high incidence in the self-advocate
group as well, including anxiety (77.1%), depression (66.3%), ADHD (28.9%), and OCD
(16.3%) (2014). “Other” was reported as ADHD.
As shown in Figures 4-16, self-advocates reported being diagnosed by a psychiatrist
(45%), psychologist (33%), and developmental paediatrician (22%). Similar to referral
wait times, self-advocates were dissatisfied with the time period they were required
to wait for their diagnosis. Because of this, the self-advocate cohort was not formally
diagnosed until later in life. Many recalled feeling different from their peers growing up
and not understanding why.
Self-advocates who get diagnosed later in life often experience mental health issues.
Moreover, these issues may present themselves as a primary diagnosis while ASD
can be overlooked. In the data, several individuals indicated that they had behavioural
and mental health challenges prior to receiving their diagnosis. Mental health issues
among this group provide insight into the need for more mental health supports
among self-advocates.
FIGURE 4-15: Referral for Diagnosis Given by Health Professional
Family support was recognized as the backbone of support for many self-advocates.
Other support ranged from providing services to transportation to housing.
11%
Psychologist
FIGURE 4-17: Reported Mental Health Co-Morbidities in Self-Advocates
Pediatrician
11%
8
Family Doctor
11%
56%
7
6
Psychiatrist
5
Other
11%
4
3
FIGURE 4-16: Diagnosis Given by Health Professional
1
0
Psychologist
Anxiety
Depression
Psychosis/
Schizophrenia
OCD
Other
Psychiatrist
33%
45%
Developmental Pediatrition
22%
Page 84
2
Self-advocates availed of a wide range of services (Figure 4-18) including:
•
•
•
•
•
Speech Therapy
Physiotherapy
Family Doctor
Psychiatry
•
•
•
•
•
ABA
Respite
Early IBI
Mental Health Treatment
Life Skills
Page 85
When asked to rate their satisfaction with services, there was no rating lower than
satisfied. Self-advocates were overall very satisfied with all services they received.
The average travel time to access these services was less than 30 minutes for all
services. However, when self-advocates were asked if they felt service providers were
adequately prepared to deal with individuals with ASD, overall they believed service
providers were either somewhat prepared (56%) or not prepared (44%). Focused
attention should be given to service providers dealing with ASD self-advocates.
TABLE 4-20: Top 5 Barriers To Services, NL Needs Assessment and CASDA
NL NEEDS ASSESSMENT
CASDA
Cannot afford services
Cannot afford services
Not enough resources to access services
Not enough resources to access services
5
Age prevented access to services
(being too old to avail of services)
Age prevented access to services
(being too old to avail of services)
4
Diagnosis did not qualify for services
Negative experiences with professionals in the past
FIGURE 4-18: Use of Services Reported by Self-Advocates
3
(c) Education Services and Training
2
1
Sk
ill
M
s
en
Tr ta
ea l H
tm e
en alth
t
I
fe
IB
Li
ly
Ea
r
te
pi
Re
s
AB
A
y
ia
tr
to
r
Ps
yc
h
oc
D
ily
Fa
m
ot
h
er
ap
y
l
cc
u
Th pa
er tio
ap n
y a
O
Ph
ys
i
Sp
ee
ch
Th
er
ap
y
0
Self-advocates were asked about their experiences in grade school and whether they
attended full-time or part-time. Of self-advocates surveyed, 90% had attended school
full-time. When asked about services they availed of throughout their schooling,
a wide range of services was identified, including ISSP, alternate courses, student
assistant, functional curriculum, SLP, and behaviour management.
FIGURE 4-20: Full-Time Versus Part-Time Schooling
FIGURE 4-19: Reported Barriers to Accessing Services
10%
8
Full-time
7
Part-time
6
5
4
3
90%
2
1
Page 86
r
he
Ot
To
o
se o
rv ld
ic fo
D
es r
qu iag
al no
ify si
fo s d
r s oe
er s n
vi o
ce t
Se
s
rv
ic
es
to
o
fa
r
N
o
re t e
so no
ur ug
ce h
s
La
c
pr k
of of
es tr
si ain
on e
al d
s
To
o
se you
rv n
ic g
es fo
r
Ca
n'
t
aff
or
d
0
Page 87
FIGURE 4-21: Services Accessed Through School
Troubles attributable to lacking social skills;
• Feeling different from peers;
5
• Challenges of coping with diagnosis;
4
• Feeling overwhelmed with sensory information in school environment;
3
•
Prejudices against individuals with exceptionalities;
• Bullying from peers;
2
• Misunderstandings and misconceptions about ASD in the school system;
1
• Lack of service offerings in school; and
0
ISSP
Alternate
Courses
Student
Assistant
Fuctional
Cirriculum
Speech
Therapy
IRT
Behaviour
No
Management Services
More than half of respondents (58.3%) reported no issues with their accommodations
in school. However, almost half (41.7%) did express some concerns. Concerns included:
• Poor understanding of autism within
school system;
• Late diagnosis meaning that
services were not received until
formal diagnosis occurred; and
• Students that excel academically
face challenges receiving
accommodations because their
grades are good; therefore, they are
overlooked for services.
One self-advocate described an experience of trying to fit into the regular school
system, while another noted “falling between the cracks.” Another self-advocate
described going through school without being diagnosed and experiences with
bullying.
• Lack of awareness amongst educators, and inability of educators to identify
individuals with ASD in need of referral.
When self-advocates were asked about transitioning into adulthood, only 33%
responded that they had a plan in place when they left school. For the few individuals
who did report having a transition plan, their family doctor, transition educators and
an occupational therapist were involved. Overall, individuals believed that service
providers involved in the transition phase were not knowledgeable about ASD.
When asked about the IQ 70 criterion for service and its impact on individuals, over
half of self-advocates (56%) were aware of the criterion. Respondents were asked
to comment on whether they had been impacted by it and many were extremely
knowledgeable about the criterion and its implications. Some comments included:
• Despite having a high IQ, social and emotional intelligence are much lower;
moreover, low IQ isn’t the only indicator of the need for services;
Self-advocates were asked to provide an overall rating of their satisfaction with
services they received throughout school.
• The IQ 70 barrier has been removed in other provinces;
Overall, individuals were satisfied with the services provided by school; no rating less
than satisfied was reported. Some barriers that individuals encountered in the school
system included:
• Feeling that quality of life has been impacted because of IQ 70
Page 88
• Missed opportunities for necessary services because IQ was over 70; and
Page 89
FIGURE 4-22: Self-Advocates Awareness of IQ 70 Criterion
Yes
No
Self-advocates described the support they receive from their parents with respect to
services. They also detailed the expenses related to ASD services and explained that
they are only partly covered by private insurance.
(d) ASNL
44%
Of self-advocates surveyed, 42% reported being members of ASNL, 83% were
aware of ASNL programming, and 58% reported having availed of ASNL programs.
Most individuals who did report participating in ASNL programming said they used it
occasionally, meaning weekly, or less than once a month.
56%
FIGURE 4-24: Self-Advocates and ASNL Membership, Awareness of Services, and
Access to Services
(c) Insurance And Finances
Self-advocates were divided on the issues of paying out of pocket for services, having
private insurance, and affordability of services (Refer to Figure 4-23). Self-advocates
were asked if paying for services was a significant expense for them and the majority
believed it was a burden. Similarly, 45% of self-advocates that completed the CASDA
survey felt that they could not afford to pay for the services required (2014). Individuals
believed that the services are an affordable option only because of support from
family. Moreover, individuals were able to access services because of family health
insurance. Similar to the issue of housing, self-advocates reported feeling dependent
on their families for support.
FIGURE 4-23: Financial Burden for ASD Services
10
8
ASNL Member
6
Aware of ASNL Programs
4
Accessed ASNL Programs
2
0
Yes
No
6
Paid out of Pocket for Services
5
Significant expense
4
Private Insurance
3
Affordable
2
1
0
Page 90
Yes
Self-advocates accessed only two programs, namely Social Therapy and Social Club.
When asked to rank each program’s effectiveness from 1-5 (with 1 being not effective
at all and 5 being extremely effective), Social Therapy averaged a ranking of 4.5, while
Social Club averaged 4.0.
When asked about barriers to programming and services, individuals mentioned
transportation issues getting to the Elaine Dobbin Centre in St. John’s. They also
mentioned that levels of maturity were too disparate in the Social Therapy Program.
Despite low response rates, when asked what adults with ASD wanted to see as
the first priority of the ASNL, self-advocates reported family support (outreach) and
advocacy.
No
Page 91
When asked to describe the reasons why individuals do not access ASNL services,
primary reasons given included:
iv. Key Findings
• Lack of awareness of ASNL;
• Concern whether programs would be appropriate for their diagnosis;
• Lack of services in smaller communities; and
Key Findings
Description
Key Statistics or Quotes
• Transportation to and from ASNL.
1) Residential
Appropriate and affordable housing suitable for
self-advocates with ASD was a major concern.
• 50% of self-advocates
reported living at home
2) Financial
Assistance
Self-advocates reported challenges with
supporting themselves financially. This included
paying for required services. Without dependence
on families, self-advocates believed they did not
have the means to support themselves.
reported expenses
related to ASD to be a
significant burden
3) Supportive
Employment
Self-advocates described the need for supportive
employment opportunities.
reported being
unemployed
4) Mental Health
Services
Mental health was often associated with ASD,
particularly in the self-advocate cohort. Better
access to services and care for dealing with such
co-morbidities was discussed at length.
• Self-advocates reported
the following mental
health issues:
Self-advocates acknowledged limited access to
services because of their age. Overall, they were
satisfied with services they did avail of.
• 58% not enough
resources
6) IQ 70 Criterion
Self-advocates were generally aware of IQ 70 and
several individuals reported being affected by it.
While most self-advocates reported high IQ scores,
they believed their social skills were lacking.
were aware of the IQ 70
criterion
7) School
Accommodations
Self-advocates discussed their experience in the
school system. Many individuals did not fit the
general mold, and believed they fell between
the cracks. Bullying was discussed as an issue
throughout their schooling. Self-advocates felt
educators needed more awareness of ASD,
specifically how to recognize signs of ASD in the
classroom and how to help individuals with ASD
cope in schools.
• 41.7% of self-advocates
reported issues with
accommodations in
school
8) ASNL
ASNL was discussed at length. Approximately half
of self-advocates reported using ASNL services but
Social Therapy and Social Club were the only two
services accessed. Self-advocates were unsure if
the programming would be appropriate for their
needs.
• 58.3% of self-advocates
did access ASNL
programming
Self-advocates provided the following recommendations for ASNL:
• Offer a self-advocate mentorship program;
• Improve lighting of ASNL physical structure, as it is problematic for many
individuals with ASD;
• Sound proof certain areas at ASNL locations, as it is problematic for individuals
with ASD; and
• Help self-advocates navigate the system and get in touch with required services.
5) Access to
Services
Page 92
• 67% anxiety
• 58% depression
• 33% OCD
• 33% cannot afford
• 33% too old for
services
• 33% lack of trained
professionals
• Those who did access
programming only
availed of Social Club
and Social Therapy
Page 93
5.0 Respondents
Providing Services
These service providers had been working with ASD clients for an average of 12 years.
Most respondents had worked with preschoolers (43%) or school age children (37%).
20% reported having worked with adults.
FIGURE 5-2: Service Providers Broken Down by Age Group They Service
Up to 5 years of Age
20%
6-17 Years of age
43%
5.1 Healthcare Sector
18 years of age and older
This section details responses from service providers who participated in the survey
and/or completed an interview. There was considerable variability in the professions of
the respondents ranging from ABA therapists to developmental paediatricians.
37%
i. Health Sector Demographics
As illustrated in Figure 5-1, the largest group of respondents to the service provider
surveys were ABA Therapists (38%), and SLP’s (32%). Several respondents (23%)
identified themselves in the “other” category and included audiologist, behaviour
management specialist, ASD consultant, developmental paediatrician, physiotherapist,
and social worker.
The majority of respondents (59%) provided treatment; however, a substantial portion
(41%) reported providing both treatment and diagnostic care. Public sector care was
most highly represented (59%); and most often care was provided through home
visits (45%) or school visits (23%). Additionally, respondents reported providing
continuous care (65.3%) most often. This information is summarized in Table 5-1.
FIGURE 5-1: Type of Respondent
ABA
23%
Speech Therapist
38%
Psychologist
Physician
32%
4%
Other
2% 1%
Page 94
Page 95
TABLE 5-1: Service Provider Demographic Information
TOTAL
N (%)
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
SCHOOL AGE
CHILDREN
(6-17 YEARS)
TOTAL N (%)
ADULTS
(18+ YEARS)
N (%)
TOTAL
N (%)
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
SCHOOL AGE
CHILDREN
(6-17 YEARS)
TOTAL N (%)
ADULTS
(18+ YEARS)
N (%)
ABA
56 (37.8)
24 (38.1)
24 (43.6)
8 (26.7)
Occupational
Therapist
6 (4.1)
2 (3.2)
2 (3.6)
2 (6.7)
Physician
2 (1.4)
1 (1.6)
1 (1.8)
0 (0.0)
Psychologist
3 (2.0)
1 (1.6)
1 (1.8)
1 (3.3)
Speech Therapist
47 (31.8)
23 (36.5)
14 (25.5)
10 (33.3)
Other
34 (23.0)
12 (19.0)
13 (23.6)
9 (30.0)
Avalon Region
83 (56.1)
31 (49.2)
33 (60.0)
19 (63.3)
Eastern Region
28 (18.9)
12 (19.0)
11 (20.0)
5 (16.7)
• Nurses;
South Central Region
10 (6.8)
5 (7.9)
4 (7.3)
1 (3.3)
• Mental health specialists; and
Western Region
24 (16.2)
14 (22.2)
6 (10.9)
4 (13.3)
Labrador Region
3 (2.0)
1 (1.6)
1 (1.8)
1 (3.3)
• Speech therapists.
Diagnostic
0 (0)
0 (0.0)
0 (0.0)
0 (0.0)
Treatment
78 (52.0)
33 (57.9)
29 (61.7)
16 (57.1)
Both
72 (48)
24 (42.1)
18 (38.3)
12 (42.8)
Public
75 (58.6)
41 (66.1)
16 (44.4)
18 (60.0)
Private
27 (21.1)
12 (19.4)
11 (30.6)
4 (13.3)
Both
26 (20.3)
9 (14.5)
9 (25.0)
8 (27.7)
DEMOGRAPHICS
Service Provider
Region
Type of Care
Sector of Work
DEMOGRAPHICS
How Service is Typically Provided
Block/Intermittent
10 (8.5)
6 (11.8)
2 (4.9)
2 (7.6)
Continuous
77 (65.3)
32 (62.7)
31 (77.5)
14 (53.8)
Defined number of
sessions
5 (4.2)
3 (5.9)
1 (2.4)
1 (3.8)
Other
26 (22.0)
10 (19.6)
7 (17.1)
9 (34.6)
Qualitative interviews were also conducted with a wide range of healthcare service
providers. These individuals included:
• Physicians;
They provided both public and private care, including the following services:
• Referrals;
• Diagnoses; and
• Interventions/Treatment
Services Delivered Through
Outpatient Services
49 (21)
23 (20.7)
13 (16.3)
13 (27.7)
Inpatient Services
10 (4)
4 (3.6)
2 (2.5)
4 (8.5)
Home Visits
106 (45)
49 (44.1)
36 (45.0)
21 (44.7)
School/preschool
visits
54 (23)
26 (23.4)
22 (27.5)
6 (12.8)
Other
19 (9)
9 (8.1)
7 (8.8)
3 (6.4)
Page 96
The majority of respondents were from the Avalon Region (57%) as it is the most
population dense area of the province and housed with the most ASD resources.
Eastern Region (18%) and Western Region (16%) also had high response rates, while
only 2% of respondents came from the Labrador Region.
Page 97
FIGURE 5-3: Service Providers Broken Down by Region
2%
TABLE 5-3: Course of Care as Reported by Service Providers
Avalon Region
16%
Eastern Region
7%
57%
18%
COURSE OF CARE
Western Region
Where do referrals come from
Labrador Region
TABLE 5-2: Health Service Providers by Age Region
REGION
TOTAL
N (%)
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
SCHOOL AGE
CHILDREN
(6-17 YEARS)
N (%)
Avalon Region
83 (56.1)
31 (49.2)
33 (60.0)
Eastern Region
28 (18.9)
12 (19.0)
10 (6.8)
Western Region
Labrador Region
SCHOOL AGE
CHILDREN
(6-17 YEARS)
N (%)
ADULTS
(18+ YEAR)
N (%)
Family Physician
73 (49.3)
37 (58.7)
17 (30.9)
19 (63.3)
Public health nurse
61 (41.2)
30 (47.6)
18 (32.7)
13 (43.3)
Daycare
40 (27.0)
19 (30.2)
12 (21.8)
9 (30.0)
School system
43 (29.1)
14 (22.2)
18 (32.7)
11 (36.7)
Self-referral
96 (64.9)
42 (66.7)
33 (60.0)
21 (70.0)
Social services
50 (33.8)
28 (44.4)
13 (23.6)
9 (30.0)
Other
38 (25.7)
3 (4.8)
22 (40.0)
13 (43.3)
13 (22.8)
4 (16.0)
6 (31.5)
3 (23.1)
Wait Times for Diagnosis
ADULTS
(18+ YEARS)
N (%)
Less than one month
Between 1-2 months
4 (7.0)
2 (8.0)
1 (5.3)
1 (7.7)
Between 3-5 months
7 (12.3)
3 (12.0)
3 (15.8)
1 (7.7)
19 (63.3)
Between 6-7 months
11 (19.3)
6 (24.0)
4 (21.1)
1 (7.7)
11 (20.0)
5 (16.7)
Between 8-10 months
3 (5.3)
2 (8.0)
0 (0.0)
1 (7.7)
5 (7.9)
4 (7.3)
1 (3.3)
Between 11-12 months
1 (1.8)
1 (4.0)
0 (0.0)
0 (0.0)
24 (16.2)
14 (22.2)
6 (10.9)
4 (13.3)
Greater than 12 months
18 (31.6)
7 (28.0)
5 (26.3)
6 (46.2)
3 (2.0)
1 (1.6)
1 (1.8)
1 (3.3)
Wait Times for Treatment
27 (12.9)
3 (10.0)
18 (52.9)
6 (28.6)
Less than one month
iii. Analysis
(a) Referral and Diagnosis
Healthcare service providers indicated that the majority of referrals were self-referrals
(64.9%). Family physicians also refer many individuals to ASD healthcare providers.
When healthcare providers were asked about wait times for diagnosis of ASD, 32%
reported a wait time of over 12 months, while 23% reported wait times of less than one
month. Similar wait times were observed for treatment of ASD. Wait times were reported
as greater than 12 months by 27%, while 32% reported wait times less than one month.
Healthcare service providers indicated that wait times for adults with ASD were generally
longer than for other age groups. They were described as being greater than 12 months
for more adults than those in other age groups (46.2%).
Page 98
TOTAL
N (%)
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
Between 1-3 months
11 (12.9)
3 (10.0)
4 (11.8)
4 (19.0)
Between 4-6 months
2 (2.4)
1 (3.0)
1 (2.9)
0 (0.0)
Between 7-9 months
19 (22.4)
10 (33.3)
6 (17.8)
3 (14.3)
Between 10-12 months
3 (3.5)
2 (5.0)
1 (2.9)
0 (0.0)
Greater than 12 months
23 (27.1)
11 (36.7)
4 (11.8)
8 (38.1)
Greatest Barriers to Reducing Wait Time
Human Resources
70 (60.9)
28 (56.0)
26 (65.0)
16 (64.0)
No Shows
8 (7.0)
1 (2.0)
5 (12.5)
2 (8.0)
Number of referrals
3 (2.6)
3 (6.0)
0 (0.0)
0 (0.0)
Physical Resources
10 (8.7)
8 (16.0)
1 (2.5)
1 (4.0)
Other
24 (20.9)
10 (20.0)
8 (20.0)
6 (24.0)
Yes
81 (61.3)
34 (59.6)
29 (61.7)
18 (64.0)
No
51 (38.6)
23 (40.4)
18 (38.3)
10 (36.0)
Aware of IQ 70 Rule
Page 99
Elements of the diagnostic process were diverse and included patient history, physical
exam and diagnostic assessment. Most healthcare service providers described the
diagnosis process as a team approach (61%).
Co-morbidities are commonly observed in individuals with ASD. Healthcare service
providers were asked to report on mental health co-morbidities that they encountered
in individuals with ASD. These co-morbidities included:
• Anxiety;
• Depression;
• ADHD; and
• Obsessive Compulsive Disorder.
TABLE 5-4: Elements of Diagnosis Process, Interventions, and Co-Morbidities
ELEMENTS OF
DIAGNOSTIC
PROCESS
TOTAL
N (%)
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
SCHOOL AGE
CHILDREN
(6-17 YEARS)
N (%)
ADULTS
(18+ YEAR)
N (%)
What are the Elements of your Diagnostic Process
Patient History
48 (32.4)
21 (33.3)
16 (29.1)
11 (36.7)
Physical Exam
30 (20.3)
14 (22.2)
8 (14.5)
8 (26.7)
Diagnostic
Assessment
42 (28.4)
20 (31.7)
13 (23.6)
9 (30.0)
Other
37 (25.0)
16 (25.4)
11 (20.0)
10 (33.3)
ELEMENTS OF
DIAGNOSTIC
PROCESS
TOTAL
N (%)
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
SCHOOL AGE
CHILDREN
(6-17 YEARS)
N (%)
ADULTS
(18+ YEAR)
N (%)
Associated co-morbidities associated with diagnoses
Anxiety
27 (18.2)
11 (17.5)
10 (18.2)
6 (20.0)
Depression
17 (11.5)
7 (11.1)
5 (9.1)
5 (16.7)
Obsessive
Compulsive
Disorder
21 (14.2)
8 (12.7)
8 (14.5)
5 (16.7)
Other
24 (16.2)
9 (14.3)
8 (14.5)
7 (23.3)
Referrals for diagnosis often came from public health nurses, SLPs, CMS and family
physicians. One physician described the challenge of noticing signs of ASD when s/he
may only be seeing a child for small blocks of time.
Barriers to diagnosis continue to exist. Healthcare service providers discussed a lack
of education on the part of caregivers surrounding ASD. Another barrier that they
described was non-acceptance of a diagnosis by the caregivers.
(b) Services and Supports
When healthcare providers were asked if they were aware of the IQ 70 criterion, a
significant proportion (39%) was not aware. However, for those who were aware, 33%
reported that their patients had been impacted by IQ 70. Impact of the IQ criterion
increased with age of the individual; however, there was not a significant difference
across age groups.
Approach to Diagnosis
Individual
8 (12.9)
3 (10.7)
2 (9.5)
3 (23.0)
Team
39 (62.9)
18 (64.3)
15 (71.4)
6 (46.2)
Other
15 (24.2)
7 (25.0)
4 (19.0)
4 (30.7)
Medication
3 (2.0)
0 (0.0)
1 (1.8)
2 (6.7)
Individual
Therapy
103 (69.6)
44 (69.8)
37 (67.3)
22 (73.3)
Group Therapy
33 (22.3)
13 (20.6)
10 (18.2)
10 (33.3)
Parent mediated
intervention
82 (55.4)
36 (57.1)
26 (47.3)
20 (66.7)
Other
31 (20.9)
15 (23.8)
10 (18.2)
6 (20.0)
Interventions Used
Page 100
Page 101
TABLE 5-5: IQ 70 Criterion
IQ 70
TOTAL
N (%)
TABLE 5-6: Barriers to Services Identified by Service Providers in NL and CASDA
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
SCHOOL AGE
CHILDREN
(6-17 YEARS)
N (%)
ADULTS
(18+ YEAR)
N (%)
Has the IQ 70 ever been a Barrier for you Providing Services?
NL NEEDS ASSESSMENT
CASADA
Lack of resources
97%
Lack of resources
92%
Yes
32 (33.0)
13 (31.7)
12 (34.2)
8 (36.4)
73%
56%
No
65 (67.0)
28 (68.3)
23 (65.7)
14 (63.6)
73%
34%
Difficulty affording services
70%
Difficulty affording services
81%
103 (69.6)
44 (69.8)
37 (67.3)
22 (73.3)
Not able to access services because
diagnosis does not qualify them for
services because of IQ score
47%
Not able to access services because
diagnosis does not qualify them for
services because of IQ score
45%
Being too old to receive services that
are needed
47%
Being too old to receive services that
are needed
47%
Interventions Used?
Individual Therapy
Parent Mediated
Intervention
82 (55.4)
36 (57.1)
26 (47.3)
20 (66.7)
Group Therapy
33 (22.3)
13 (20.6)
10 (18.2)
10 (33.3)
Medication
3 (2.0)
0 (0.0)
1 (1.8)
2 (6.7)
Other
31 (20.9)
15 (23.8)
10 (18.2)
6 (20.0)
Healthcare service providers described the following interventions for individuals with
ASD:
• Individual Therapy (69.6%);
• Group Therapy (22.3%);
• Parent Mediated Intervention (20.9%); and
• Medication (2%).
In addition to caregivers, professionals in NL identified the barriers shown in Table
5-6. The top barriers identified from our survey align with CASDA’s National Survey;
however, a few discrepancies exist. Most notably, service providers in NL were more
than twice as likely to report travel distance as a concern. This is not surprising, as NL
has a small population dispersed across a wide geographic expanse.
Additionally, healthcare service providers reported a lack of trained professionals in NL
compared to CASDA’s National Report (2014).
(Canadian Autism Spectrum Disorders Alliance, 2014)
(c) Transitions
A section of the survey was dedicated to transitional care offered by healthcare service
providers. Only 34% reported that their practice provided continual care into adulthood
while an even lower percentage, 30%, stated that they assist individuals in preparing for
their transition into adulthood. While transitioning to adult care, 29% of individuals with
ASD experienced a break in service provision. On average, healthcare service providers
typically transfer between one and ten patients from their service per year to other
providers. These individuals are usually transferred to:
• Allied Health Professional (26%);
• Neurologist (4%); and
• Psychiatrist (13%);
• Other (45%).
• Physician (11%);
Interventions were discussed at great length with healthcare service providers. Many
of these discussions surrounded ABA therapy. There was no general consensus on the
effectiveness of ABA; however, a majority of the service providers interviewed were not
happy with the model of care that ABA provides.
While it may not be ideal, a better model of care could be designed if modifications were
made and healthcare service providers agreed to these changes.
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Page 103
TABLE 5-7: Transitional Care Provided by Service Providers
TRANSITIONAL
CARE
TOTAL
N (%)
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
Healthcare service providers were asked to describe the strengths of the current
model of service delivery. The following strengths were reported:
SCHOOL AGE
CHILDREN
(6-17 YEARS)
N (%)
ADULTS
(18+ YEAR)
N (%)
Care in childhood continue to adulthood
Yes
42 (34.4)
16 (29.6)
15 (33.3)
11 (47.8)
No
80 (65.6)
38 (70.3)
30 (66.7)
12 (52.2)
• Strong multidisciplinary approach;
• Team diagnosis;
• Supports for home- based care;
• Client-focused care;
• No waitlist for ABA services;
• Early intervention;
• Ease of cross-referrals;
• Expert understanding and experience
from providers;
• Family-centered care;
• Collaboration with professionals;
Prepare for transitions into adulthood
Yes
30 (29.7)
11 (26.2)
11 (28.9)
8 (38.1)
No
71 (70.3)
31 (73.8)
27 (71.1)
13 (61.9)
• Research-based practice;
• Support services provided in school;
• Individualized approach; and
• Equitable care for individuals with ASD.
Number of ASD patients transferred each year
Healthcare service providers were asked to describe the weaknesses of the current
model of service delivery. The following weaknesses were reported:
No patients
13 (11.5)
5 (10.4)
6 (14.6)
2 (8.3)
1-10
27 (23.9)
15 (31.3)
8 (19.5)
4 (16.7)
11-20
9 (8.0)
3 (6.3)
3 (7.3)
3 (12.5)
20+
7 (6.2)
3 (6.3)
3 (7.3)
1 (4.2)
NA
57 (50.4)
22 (45.8)
21 (51.2)
14 (58.3)
• Lack of social skills training;
• Limited number of service providers;
Yes
23 (29.5)
9 (28.1)
9 (32.1)
5 (27.8)
• Limited training opportunities for
staff in ASD field;
No
15 (19.2)
5 (15.6)
6 (21.4)
4 (22.2)
• Difficulties ‘navigating the system;’
Not Sure
40 (51.3)
18 (56.3)
13 (46.4)
9 (50.0)
• No access to Occupational Therapists
in schools;
Neurologist
2 (1.4)
2 (3.2)
0 (0.0)
0 (0.0)
Psychiatrist
6 (4.1)
0 (0.0)
3 (5.5)
3 (10.0)
• Limited availability of alternative
treatments for autism outside of ABA;
Physician
7 (4.7)
3 (4.8)
3 (5.5)
1 (3.3)
Allied Health
Professional
14 (9.5)
7 (11.1)
4 (7.3)
3 (10.0)
Other
24 (16.2)
11 (17.5)
7 (12.7)
6 (20.0)
Break in provision of service for transitions
Transferred to
Transitional care4 is essential for individuals with ASD. When individuals interviewed
were asked what a successful journey for someone with ASD should look like, all
interviewees described the need for appropriate transition through each major phase
of an individual’s life.
Strengths and Weakness of Current Service Model and Suggestions for Improvement
• Limitations of and need for revision of
ISSP;
• Lack of advocacy for individuals
with ASD;
• Limited resources (programs,
funding, staffing);
• Lack of coordination between
education and healthcare;
• Challenges getting government
funding; families with limited
financial resources often have
challenges paying out of pocket;
and
• Wait times for diagnosis and
intervention.
Comparably, the CASDA Report asked professionals to identify their top five current
service needs for individuals with ASD and their families. The, following needs were
captured (2014):
• Early detection of ASD;
• Early IBI;
• Social skills programming;
• Behavioural intervention programs
for behavioural management; and
• Respite care.
4 Transitional care means managing the client through changes in service providers, or programming.
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Page 105
The healthcare service provider survey asked individuals to choose the age group
they believed received the best access to services. Overwhelmingly, the younger age
groups were believed to have the best access to services. Of respondents surveyed,
90% pinpointed either 1-3 years of age or 4-6 years of age (Figure 5-4).
FIGURE 5-4: Age Group With Greatest Access to Services
0% 0%
5%
5%
1-3 years old
23%
Healthcare service providers offered suggestions for improvement. An issue often
mentioned by all respondents was the need for more financial and human resources.
However, some service providers believed that it was not necessary to have additional
resources, but rather, the system should make better use of what already exists. One
individual remarked on the need to follow “best practices” used in other provinces and
the importance of equality when it comes to delivery of ASD services.
Other suggestions for improvement included: more education for parents on how to
interact with their children and how to develop skills that are being taught through
services like speech therapy; bringing OT into the school system; and getting rid of the
IQ 70 criterion.
4-6 years old
7-10 years old
11-14 years old
15-17 years old
The need for early intervention is well known and healthcare service providers
understand that it is critical to minimize waitlists for referrals. They also expressed the
need for more funding so that services could be extended further.
18+ years old
67%
Suggestions for Improvements
When asked which age group had the most challenges with access to services,
responses were more varied, with 36% of individuals reporting that the 18 years and
older age group experienced the most challenges with access to services (Figure 5-5).
Interestingly, 15% of individuals surveyed reported the 1-3 age group as experiencing
the most challenges with access to services. This may be because of reported long
wait times for diagnosis and intervention combined with the bottleneck effect of
parents who want early intervention and are trying to access many services for their
children.
(d) Professional Development and Training
Training for Service Providers
Training in ASD is critical for service providers. When the healthcare service provider
group was asked if they had received training specific to ASD, 89% reported “yes.”
However, when asked if they had continued their education in ASD, only 72% replied
“yes.” Survey participants were asked if they felt they would benefit from more training
specific to ASD and 98% reported “yes” they would benefit.
FIGURE 5-5: Age Group With Most Challenges Accessing Services
15%
36%
When we examine in further detail (Figure 5-6, Table 5-8) the training of healthcare
service providers by the age group they serve, it is clear that professionals dealing
primarily with ASD adults have received less training; only 80% of those respondents
reported receiving ASD-specific training compared to 90% for preschool children and
91% for school-aged children. Additionally, only 67% working with adults participated
in continued ASD training compared to 71% with preschool children and 76% with
school age children. However, when the healthcare service provider group working
with adults was asked if they would benefit from more training, they responded, “yes”
97% of the time.
1-3 years old
5%
4-6 years old
7-10 years old
11-14 years old
21%
15-17 years old
18+ years old
8%
15%
Page 106
Page 107
FIGURE 5-6: Training Opportunities for Service Providers
150
As was indicated in survey responses, healthcare providers want more training and
professional development when it comes to ASD. Individuals providing services are
eager to advance their knowledge.
Would Benefit From Additional Training
120
Continues to Participate in ASD Specific Training
(e) ASNL
Has Had ASD Specific Training
90
A portion of the survey was dedicated to ASNL. Only 23% of healthcare service
providers reported being members of ASNL; however, 72% of respondents reported
being familiar with the programs and services offered by ASNL.
60
30
0
TABLE 5-9: ASNL Membership and Access to Programs for Service Providers
Yes
No
TOTAL
N (%)
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
SCHOOL AGE
CHILDREN
(6-17 YEARS)
N (%)
ADULTS
(18+ YEARS)
N (%)
Yes
21 (23.1)
12 (20.7)
11 (22.9)
8 (28.6)
No
103 (76.9)
46 (79.3)
37 (77.1)
20 (71.4)
TABLE 5-8: Training Opportunities for Service Providers
ASNL
TRAINING
TOTAL
N (%)
PRESCHOOLERS
(UP TO 5 YEARS)
N (%)
SCHOOL AGE
CHILDREN
(6-17 YEARS)
N (%)
ASNL Member
ADULTS
(18+ YEARS)
N (%)
Aware of the programs and services ASNL offers for service providers
Had ASD Specific Training
Yes
131 (88.5)
57 (90.5)
50 (90.9)
24 (80.0)
No
17 (11.5)
6 (9.5)
5 (9.1)
6 (20.0)
96 (71.6)
40 (69.0)
36 (75.0)
20 (71.4)
No
38 (28.4)
18 (31.0)
12 (25.0)
8 (28.6)
Availed of any of the following resources/training from the ASNL
Participate in Continued Professional Development
Yes
106 (72.1)
45 (71.4)
41 (75.9)
20 (66.7)
No
41 (27.9)
18 (28.6)
13 (24.0)
10 (33.3)
Would Benefit from additional Training
Yes
144 (98.0)
62 (98.4)
53 (98.1)
29 (96.7)
No
3 (2.0)
1 (1.6)
1 (1.9)
1 (3.3)
Healthcare service providers that participated in qualitative interviews reported
participating in continued professional development and appeared to take ownership
for their own professional development and the opportunities that do exist.
One physician described a 25-hour course in which s/he had participated. However,
s/he recognized the time commitment as not being ideal for all individuals. The
physician further described other opportunities for physicians to enhance their
education in the area of development disabilities.
Page 108
Yes
Barbara Hopkins Library
Resources
25 (16.9)
9 (15.5)
9 (18.8)
7 (25.0)
Professional Development
Workshops
51 (38.5)
21 (36.2)
19 (39.6)
11 (39.3)
Individuals Professional
Consultation
8 (5.1)
0 (0.0)
3 (6.3)
5 (17.9)
Assistive Technology
Consultation
9 (6.4)
3 (5.2)
4 (8.3)
2 (7.1)
Other
10 (6.8)
5 (8.6)
3 (6.3)
2 (7.1)
Healthcare service providers gave varied responses when asked about the role they
felt ASNL should provide. However, it was clear that they felt it was a place with which
all individuals with ASD and their families should be connected. They could play an
important role by providing a referral to ASNL.
Page 109
iv. Key Findings
Key Findings
Description
1) Mental Health
Services
Healthcare service providers frequently reported
mental health issues associated with ASD. Better
access to services and care for dealing with such
co-morbidities is needed.
• The following mental
health issues were
reported by service
providers:
Key Findings
Description
8) ABA Therapy
There was no consensus among health service
providers on the most effective model for ABA.
Social and life skills training were discussed as
lacking in current ABA therapy.
“I truly believe that
providing input into
the ABA program is an
effective model of service
delivery if those senior
therapists are able to be
flexible enough to carry
out what we’re doing and
if they can be creative to
do some things like that
and that’s becoming more
challenging.”
9) Education for
Caregivers of
Individuals with
ASD
Health service providers discussed the need for
better awareness and education for caregivers in
recognizing the developmental milestones of their
child.
“The biggest barrier to
getting diagnosed, I
think, is a lot of people
still don’t have a good
understanding of what
the early childhood
developmental milestones
are.”
• 18.2 % anxiety
• 11.5% depression
• 14.2% OCD
2) Transition
Planning
All healthcare service providers reported transition
planning as a major area needing improvement.
Transitions were lacking when individuals were
transferring from youth to adult care. There was no
planning and preparation for such transitions.
• 70.3% said they did not
play a role in transition
planning
3) Access to
Services for all
Ages
Healthcare service providers described individuals
aged 1-6 years as having the best access to
services for ASD, while adults 18 years and older
were reported as having the greatest difficulties
accessing services.
• 90%, reported children
ages 1-6 having the
best access to services,
4) Wait time for
Diagnosis
Healthcare service providers reported a greater
than 12 month wait list for diagnosis of ASD.
• 31.6% reported a longer
than 12 month waitlist
for ASD diagnosis
5) Continued
Professional
Development
Healthcare service providers were generally
trained in ASD and were interested in continuing
their training. However, fewer numbers of them
continue professional development and training in
ASD
• 27.9% do not take part
in regular professional
development
ASNL was discussed at length. Few health
service providers reported being members of
ASNL; however, there was a higher uptake of
programming through ASNL. Health service
providers felt that ASNL should be responsible for
connecting members of the ASD community.
• Only 23% of
respondents reported
being members of ASNL
An alarming number of healthcare providers were
not aware of the IQ rule.
• 40% were not aware of
IQ 70
6) ASNL
7) IQ 70 Criterion
Page 110
• 36% of services
providers reported
adults over 18 years
older with the most
challenges to services
• 98% were interested in
continuing professional
development
• 38.5% reported taking
part in professional
development
workshops.
5.2 Education Sector
This section presents the results from the educators’ survey and interviews. Five
qualitative interviews and 226 online surveys were completed.
i. Educators’ Demographics
Based on survey responses, teachers represented 39% of the service provider
responses submitted. Many roles were represented including Administration (22%),
Guidance Counsellor (5%), Instructional Resource Teacher (24%), and Other (10%).
Respondents who identified themselves in the “Other” category included individuals
who played multiple roles within the school system: teacher intern, speech language
pathologist, and student assistant (Figure 5-7).
Respondents also self-identified diverse roles within the education system during
qualitative interviews. These included classroom teachers, special education teachers,
and administrators.
Page 111
FIGURE 5-7: Role of Education Respondent in the School System
FIGURE 5-9: Breakdown of Education Respondents by Region
60
10%
Teacher
Teacher
Number of Respondents
22%
IRT
Administration
5%
39%
Guidance Counselor
Other
24%
50
Administration
40
IRT
30
Guidance
Counsellor
20
Other
10
0
Avalon
Each region of the province was well represented by educators. Figure 5-8 shows
that 26% of respondents were from the Western Region, followed by 24% from the
Eastern Region, 21% from the Avalon Region, 15% from the South Central Region, and
14% from the Labrador Region. Most professional roles were found throughout the
province with the exception of Guidance Counsellors, who did not have representation
in the South Central or Labrador Regions (Figure 5-9).
Eastern
South Central
Western
Labrador
Region
All school grades were represented throughout NL. Moreover, the number of students
within schools and districts ranged from 11-1100. Furthermore, respondents described
a wide range of ASD cases in the school. This range fell between 1 and 58 individuals
with ASD in school.
FIGURE 5-8: Geographic Representation of Education Respondents
59
60
50
54
iii. Analysis
47
40
37
32
30
(a) Services and Supports
Pathways for Students with ASD
20
10
0
Avalon
Eastern
South
Central
Western
Labrador
Region
Page 112
When we discuss “Pathways” for students with ASD, we are looking at whether
individuals attend school full time or for partial days and the reasons associated with
partial day schooling. Most educators reported that some individuals with ASD in
their school attended partial days for various reasons. In the Labrador Region, there
appears to be a larger proportion of individuals reported as not attending school full
time (40.7%). Safety was the primary factor associated with partial day schooling.
Page 113
(b) Transitions for Students
TABLE 5-10: Full-Time Versus Part-Time Schooling for Students With ASD
PATHWAY
AVALON
N (%)
EASTERN
N (%)
SOUTH
CENTRAL
N (%)
WESTERN
N (%)
LABRADOR
N (%)
A section of the educators’ survey and interviews was devoted to transitions. Of
educators surveyed, 65% reported preparing individuals with ASD for transitioning
between grades, and 78% reported preparing individuals for transitions between
schools (Table 5-11).
TABLE 5-11: Transition Planning Between Grades, Schools, and Into Adulthood
Are there ASD students who do not attend school full time?
Yes
12 (34.3)
11 (22.4)
7 (25.0)
7 (14.0)
11 (40.7)
No
15 (42.9)
25 (51.0)
18 (64.3)
32 (64.0)
7 (25.9)
Not Sure
8 (22.9)
13 (26.5)
3 (10.7)
11 (22.0)
9 (33.3)
Reasons for not doing full-time school
AVALON
N (%)
EASTERN
N (%)
SOUTH
CENTRAL
N (%)
WESTERN
N (%)
LABRADOR
N (%)
Plan for transition between grades
Health
9 (75.0)
11 (100.0)
4 (57.1)
6 (85.7)
4 (36.4)
Yes
24 (64.9)
38 (79.2)
21 (75.0)
40 (78.4)
18 (66.7)
Safety
2 (16.7)
4 (36.4)
0 (0.0)
2 (28.6)
0 (0.0)
No
9 (24.3)
7 (14.6)
3 (10.7)
5 (9.8)
4 (14.8)
No Support
0 (0.0)
5 (45.5)
3 (42.9)
4 (57.1)
1 (50.0)
Not Sure
4 (10.8)
3 (6.3)
4 (14.3)
6 (11.8)
5 (18.5)
Other
3 (25.0)
9 (81.8)
1 (14.3)
1 (14.3)
1 (50.0)
Plan for transition between schools
Had to recommend not doing a full day of school?
Yes
28 (77.8)
40 (83.3)
23 (85.2)
34 (66.7)
20 (74.1)
Yes
6 (16.7)
3 (6.3)
1 (3.6)
1 (2.0)
2 (7.1)
No
4 (11.1)
3 (6.3)
3 (11.1)
10 (19.6)
3 (11.1)
No
29 (80.6)
43 (89.6)
25 (89.3)
47 (94.0)
26 (92.9)
Not Sure
4 (11.1)
5 (10.4)
1 (3.7)
7 (13.7)
4 (14.8)
Not sure
1 (2.8)
2 (4.2)
2 (7.1)
2 (4.0)
0 (0.0)
Plan for transition out of School
If yes, what was the specific reason
Yes
13 (36.1)
40 (83.3)
9 (32.1)
34 (66.7)
20 (74.1)
Safety
6 (100.0)
3 (100.0)
0 (0.0)
1 (100.0)
1 (50.0)
No
14 (38.9)
3 (6.3)
11 (39.3)
10 (19.6)
3 (11.1)
Health
3 (50.0)
2 (66.7)
1 (100.0)
0 (0.0)
0 (0.0)
Not Sure
9 (11.1)
5 (10.4)
8 (28.6)
7 (13.7)
4 (14.8)
No Support
0 (0.0)
1 (33.3)
1 (100.0)
0 (0.0)
1 (50.0)
Other
1 (16.7)
1 (33.3)
0 (0.0)
0 (0.0)
1 (50.0)
Apart from full time and partial day schooling, educators confirmed that there were
students that were doing well academically in a classroom but who struggled with the
social aspect of regular schooling.
However, only 36% reported preparing students with ASD for transitioning out of
school and into adulthood. The comparison between transitioning between grades,
schools, and out of school can be observed in Figure 5-10.
Inclusion within schools was another theme commonly heard throughout the
interviews. Some educators discussed keeping children together and how important it
is that they learn from one another.
Page 114
Page 115
Figure 5-10: Transition Planning Between Grades, Schools and Into Adulthood
30
Plan for transition out of School
25
Plan for transition between schools
20
Plan for transition between grades
Interviewees recognized that individuals with ASD often have different requirements
from other students with very little funding to support them. They described methods
used in the classroom to help students with ASD on an individual level.
They also discussed specific resources that could directly benefit students with ASD,
including more IRT time, OT in schools, and increased availability of mental health
expertise.
15
10
5
0
Yes
No
Not Sure
Response
Throughout the interviews, transitions were a major topic of discussion. Educators
identified three main types of transition: transitioning into school, transitioning
between schools and grades, and transitioning out of school. The educators believed
students with exceptionalities were given opportunities to become comfortable prior
to entering the school system.
With respect to transitioning between grades and schools, arranging private visits to
the school before starting classes was common practice. Administration was generally
prepared for students with exceptionalities who were to attend their school, and was
ready to establish proper transition structures.
An area requiring significant improvement is transition out of the school system and
into adulthood. Some educators explained that they prepared students for the outside
world by using planned placements. However, there was no discussion surrounding
formal planning for students completing high school and leaving the education
system.
The interviews raised a number of key points regarding availability of resources for
educators (Table 5-12). A primary theme was the importance of student assistants in
providing consistency for the students they are assigned to.
Educators also noted that there was a limited number of student assistants and that
the use of student assistants could be improved upon. With respect to ISSPs and/or
IEPs, informants respected the process and recognized the need for an individualized
approach. Of course, they also acknowledged the need for more resources and
services and conceded that human resources were spread very thin.
Page 116
Page 117
TABLE 5-12: Resources Available for Educators By Region
Avalon
N (%)
Avalon
N (%)
South
Central
N (%)
Eastern
N (%)
Labrador
N (%)
Western
N (%)
Smart Board
37 (78.7)
28 (82.4)
51 (94.4)
31 (96.9)
55 (93.2)
Ipad
38 (80.9)
24 (70.6)
50 (92.6)
30 (93.8)
49 (83.1)
Sensory Tools
25 (53.2)
16 (47.1)
37 (68.5)
11 (34.4)
31 (52.5)
Personal Frequency
Modulation
14 (29.8)
2 (5.9)
19 (35.2)
14 (43.8)
Copied Notes
31 (66.0)
24 (70.6)
41 (75.9)
Sensory Notes
10 (21.3)
4 (11.8)
Other
5 (10.6)
5 (14.7)
South
Central
N (%)
Eastern
N (%)
Labrador
N (%)
Western
N (%)
Who attends IEP Meeting (%)
Principal
18 (46.2)
23 (85.2)
37 (71.2)
8 (25.8)
38 (73.1)
Vice Principal
19 (48.7)
11 (40.7)
25 (48.1)
3 (9.7)
16 (30.8)
Parent
35 (89.7)
25 (92.6)
49 (94.2)
23 (74.2)
49 (94.2)
Student
7 (17.9)
10 (37.0)
10 (19.2)
2 (6.5)
5 (9.6)
Student Assistant
6 (15.4)
11 (40.7)
12 (23.1)
8 (25.8)
14 (26.9)
9 (15.3)
Other
28 (71.8)
24 (88.9)
39 (75.0)
16 (51.6)
40 (76.9)
26 (81.3)
40 (67.8)
Not Sure
2 (5.1)
2 (7.4)
1 (1.9)
3 (9.7)
3 (5.8)
12 (22.2)
5 (15.6)
6 (10.2)
How frequently does IEP get re-evaluated each year (%)
10 (18.5)
3 (9.4)
8 (13.6)
1-2 times
21 (56.8)
17 (60.7)
31 (63.3)
10 (38.5)
31 (59.6)
3-4 times
5 (13.5)
2 (7.1)
10 (20.4)
5 (19.2)
11 (21.2)
Teaching aids
Classroom Support
Instructional
Resource teacher
37 (78.7)
25 (73.5)
50 (92.6)
29 (90.6)
54 (91.5)
Greater than 4
times
1 (2.7)
0 (0.0)
1 (2.0)
1 (3.8)
2 (3.8)
Student Assistant
38 (80.9)
27 (79.4)
50 (92.6)
26 (81.3)
51 (86.4)
Never
2 (5.4)
0 (0.0)
0 (0.0)
0 (0.0)
1 (1.9)
Behavior
Management
Specialist
14 (29.8)
5 (14.7)
16 (29.6)
5 (15.6)
8 (13.6)
Not sure
8 (21.6)
9 (32.1)
7 (14.3)
10 (38.5)
7 (13.5)
Speech Therapist
26 (55.3)
17 (50.0)
41 (75.9)
22 (68.8)
36 (61.0)
Occupational
Therapist
6 (12.8)
6 (17.6)
14 (25.9)
8 (25.0)
7 (11.9)
Other
8 (17.0)
6 (17.6)
11 (20.4)
1 (3.1)
7 (11.9)
Do IEP Meetings occur? (%)
Yes
38 (97.4)
25 (92.6)
52 (100)
27 (87.1)
52 (94.5)
No
0 (0.0)
1 (3.7)
0 (0.0)
2 (6.5)
0 (0.0)
Not Sure
1 (2.6)
1 (3.7)
0 (0.0)
2 (6.5)
3 (5.5)
Wait time for IEP? (%)
Less than one
month
17 (63.0)
14 (58.3)
32 (80.0)
9 (42.9)
20 (54.1)
1-3 months
7 (25.9)
8 (33.3)
7 (17.5)
6 (28.6)
10 (27.0)
4-6 months
1 (3.7)
2 (8.3)
1 (2.5)
4 (19.0)
4 (10.8)
Greater than 6
months
2 (7.4)
0 (0.0)
0 (0.0)
2 (9.5)
3 (8.1)
Page 118
(c) Professional Development and Training
Of the educator service providers surveyed, 24% reported a lack of professional development
training specific to ASD in their school (Table 5-13). Only 56% of individuals reported that they
had received an opportunity to participate in professional development training related to ASD.
Of the individuals who were offered professional development training in their school, only 53%
reported availing of it. With the increasing prevalence of ASD in schools, this low percentage
is cause for concern. When educators were asked if professional development was refused in
their school, the majority were not aware (51%) or said it was not refused (44%).
When asked if they would be interested in participating in professional development related
to ASD, 57% of the educator service providers reported they would be, while the remaining
number either did not want to take part (2%), or were not sure if they would be interested
(41%).
Page 119
TABLE 5-13: Professional Development for Educators by Region
PROFESSIONAL
DEVELOPMENT
TOTAL
N (%)
AVALON
N (%)
EASTERN
N (%)
SOUTH
CENTRAL
N (%)
WESTERN
N (%)
Apart from training within the education degree program, interviewees discussed
limited professional development opportunities. Any training opportunities tended to
be during school in-service days and autism training was just one of many needs that
educators could choose from.
LABRADOR
N (%)
Participated in Professional Development
Yes
96 (53.0)
19 (54.3)
30 (69.8)
18 (69.2)
18 (35.3)
11 (42.3)
No
85 (47.0)
16 (45.7)
13 (30.2)
8 (30.8)
33 (64.7)
15 (57.7)
In the past there have been limited opportunities for professional development in ASD,
but it appears more educators are interested in advancing their knowledge in the area.
As opportunities arise, more educators will likely take advantage of them.
Professional Development Refused
Yes
10 (4.5)
3 (6.8)
1 (1.9)
2 (6.3)
2 (3.4)
2 (6.3)
No
98 (44.3)
18 (40.9)
31 (57.4)
17 (53.1)
25 (42.4)
7 (21.9)
Not Sure
113 (51.1)
23 (52.3)
22 (40.7)
13 (40.6)
32 (54.2)
23 (71.9)
Interested in Attending Professional Development
Yes
125 (57.1)
30 (69.8)
33 (62.3)
19 (59.4)
27 (45.8)
16 (50.0)
No
4 (1.8)
0 (0)
1 (1.9)
0 (0)
2 (3.4)
1 (3.1)
Not Sure
90 (41.1)
13 (30.2)
19 (35.8)
13 (40.6)
30 (50.8)
15 (46.9)
Factors Affecting Likelihood of More Professional Development
Time
Constraints
131 (31.8)
25 (30.1)
32 (29.6)
20 (32.3)
36 (31.0)
18 (28.6)
Financial
Reasons
86 (20.9)
15 (18.1)
17 (15.7)
16 (25.8)
24 (20.7)
14 (22.2)
Limited PD
Choices
86 (20.9)
22 (26.5)
24 (22.2)
15 (24.2)
29 (25.0)
16 (25.4)
Experience
with ASD
68 (16.5)
18 (21.7)
18 (16.7)
6 (9.7)
16 (13.8)
10 (15.9)
Other
23 (5.6)
0 (0.0)
11 (10.2)
4 (6.5)
6 (5.2)
2 (3.2)
Not Sure
18 (4.4)
3 (3.6)
6 (5.6)
1 (1.6)
5 (4.3)
3 (4.8)
When participants were asked to describe factors likely to affect professional
development, time constraint was most commonly expressed (30.1%). Other highranking choices included limited professional development options (26.5%) and
teaching experience with ASD (21.7%).
One of the primary themes that emerged from the analysis of the educator interviews
was related to training and professional development that was specific to ASD. The
interviews complemented the survey data in that interviewees described limited
training throughout their education.
Page 120
Page 121
5.3 Key Informants
iv. Key Findings
i. Demographics
Key Findings
Description
1) Transition
Planning
Transition planning was expressed as
a major area needing improvement.
Transitions were lacking when
individuals were transferring
between grades, between schools,
and particularly out of school into
adulthood. Educators reported very
little planning for these transitions.
• 64.9% prepared for transitions
between grades
2) Life Skills
Training in School
Educators described the need for
more life skills training in school that
could lead better outcomes when
school finishes.
“Ensure skills are in place for college
and/or employment [if applicable],
or general home life skills, if more
applicable.”
3) Lack of
Consistency in
Student Assistants
Educators expressed concern with
the lack of consistency in student
assistants assigned to children and
described the importance of having
the same student assistant remain
with the same children.
• Between 79.4%-92.6% reported
having student assistants; the need
for consistency was discussed.
4) Resources
available for
educators
5) Continued
Professional
Development
6) Inclusion in
Schools
Page 122
• 77.8% prepared for transitions
between schools
• 36.1% prepared for transitions out of
school
“For the younger ones that consistency
is the most important thing … they get
used to that student assistant, who
is used to what their triggers are and
their cues are, and they (SA’s) know to
remove them from a situation before
something happens.”
Educators reported access to a large
number of physical and human
resources in the classroom; however,
the general consensus was there
needs to be more.
“We only have so much money and
we can’t have it all; but there’s a lot of
things that would be of benefit. And
the other thing about it is, if we have
a number of kids here with autism,
each child will need a different type of
resource. It’s not usual that all ten, say
if there were ten, will all need the same
thing.”
Educators reported low rates of
professional development and
training in ASD; however, there was a
high interest in receiving professional
development in the area.
• 54.3%, received professional
development
Inclusion was lacking for individuals
with ASD. Educators reported some
children not attending school full
time, or having to send children home
for health and safety reasons.
• 16.7% of educators reported having
to recommend students not do full
day school.
• no mandatory professional
development for educators
Key informants’ interviews were completed with seven (7) individuals in the healthcare
and education sectors. Key informants held various roles with the Department of Health
and Community Services, Department of Education and Early Childhood Development,
Eastern Health Authority, and the NL English School District. These interviews were semistructured; they focused on key themes identified in earlier interviews with caregivers,
self-advocates and service providers. This section is divided into healthcare and
education sections and highlights how key informants felt about the identified themes.
Details of the geographic distribution of key informants cannot be disclosed to ensure
anonymity. However, it can be said that the province was well represented by the
individuals selected.
iii. Analysis
(a) Services And Supports
Key informants were asked to share their beliefs in relation to key themes that emerged
from the survey responses and interviews. This section details responses in relation to
services and supports for persons with ASD and their families.
Consistency and Retention of ABA workers
Challenges with the ABA program exist. We heard from caregivers that consistency in
ABA workers was important, and the healthcare sector recognized high turnover rates as
an issue. Key informants reported that challenges do indeed exist in ABA recruitment and
retention.
The IQ 70 Criterion
Issues concerning IQ 70 were bought forward and explained in detail. While the use of an
IQ 70 criterion can limit many individuals with ASD when seeking service provision, key
informants felt it was not as simple as just changing the policy. They noted that removal
of the IQ 70 criterion would lead to substantial financial implications for government, with
it then having to pay for many services instead of families.
Page 123
Difference in Ages
Different age groups experience varied access to services and supports. Key
informants noted the variance between service provision and age. There is much
debate surrounding ABA therapy services being provided to preschoolers and in the
school age group, but only until the end of Grade 3.
Most key informants recognized that, while all individuals experience difficulties as
they transition through school, students with ASD are particularly challenged. There
may be a need for increased services throughout schooling.
Rural Access to Service
Age can be a barrier to service, but location can also be a factor. When asked about
service delivery to rural communities as compared to urban communities, key
informants generally felt all residents had equal opportunity for access to service.
They did agree, however, that challenges exist in terms of travel distance, cost and
access to some services in rural communities.
With respect to improving rural access, key informants recognized a need for
increased staffing in concert with increased use of technology. Recruitment and
retention of staff to provide particular services and supports can be challenging.
Key informants within the education sector commonly believed all individuals with
ASD in the school system had equal opportunity for access to service, regardless
of location in the province. However, they acknowledged that distance to schools
presents a huge challenge for the few autism itinerants employed at school district
regional offices.
All key informants agreed the lack of employment opportunity for adults with ASD in
rural communities is a significant issue.
Student Assistants
Needed Improvements to Services and Supports
When asked to identify improvements needed to enhance delivery of services and
supports, key informants suggested:
• More awareness and education for caregivers, foster parents and families;
• More ASD specific professional development in-service opportunities for
teachers and administrators, and more training opportunities for student
assistants;
• Provision of sufficient staff to effectively meet needs associated with the
growing demand for ASD supports in schools;
• Provision of more supports for parents, caregivers and families coping with a
new and/or recent diagnosis; and
• Extension of services and supports to age groups or persons with ASD who do
not presently qualify (e.g. IQ above 70).
Things Being Done Well
There is always room for improvement, but key informants identified areas in which
they consider the province to be excelling. These included:
• Leadership through Atlantic Provinces Special Education Authority;
`` Online Training for educators
`` Continuing to follow through on ASD goals in the education system
• Recruiting more ASD itinerant resource teachers;
Both parents and educators highlighted the shortage of student assistants. Key
informants agreed that more can always be used but stated there had certainly been
an increase in student assistant allocations to schools in 2015-16. They recognized
availability of more student assistants was important, they did not accept it as the
only solution to the problem.
Page 124
Key informants acknowledged that no school had ever sent back resources and said
it was a fine balance for schools when trying to work successfully and within their
means.
• Increasing the number and hours of student assistants; and
• Offering a variety of supports/services for individuals with exceptionalities.
Page 125
(b) Professional Development and Training
Key informants described the need for additional learning opportunities for service
providers, parents, caregivers and families. Furthermore, they offered examples
of training within the community and were particularly enthusiastic about various
professional development opportunities for educators.
A new online training program has been piloted and is being rolled out across the
Atlantic Provinces in 2015-16. While this is a positive step and there has been a lot
uptake from teachers across the province, the training program is not a requirement
for educators. Funding comes from the departments, school district and schools to
attend sessions hosted by ASNL.
With respect to potential improvements, it was recognized that departments should
be required to take a leadership role in collaboration efforts. Most key informants
believed that there was a strong connection between health and education sectors.
They felt that both departments worked well together and the lines of communication
were open and clear.
(c) ASNL
Key informants discussed the role of ASNL and suggested that ASNL should:
• Lobby government for policy changes/services (advocacy);
• Provide outreach;
• Offer professional development to service providers;
Navigating the System
• Provide programing;
Some key informants recognized that challenges exist when families and individuals
try to navigate the system. Others felt the system was clear, easy to follow and should
present no difficulties. All key informants acknowledged that continuing education
was a priority for those who both provide and receive services and supports.
• Fundraise;
• Provide support groups that can provide education to caregivers;
• Act as initial contact after diagnosis;
• Help transition students exiting the school system; and
The Need for Supportive Employment
Key informants agreed that there was a need for more supportive employment
opportunities and acknowledged that the lack of these opportunities was a gap in
the system. Transitions were raised when discussing education and all informants
believed that effective transitions were critical, especially out of the school system
into adulthood. They noted the need to improve transitioning services and to identify
potential community partnerships.
• Develop community partners to help with supportive employment for adults
with ASD.
Engaging community partners throughout the high school years was recognized as
one means of addressing challenges related to transitioning out of the school system.
Connection Between Health and Education
A major theme that emerged from both the interviews and the surveys was the
perceived disconnect between healthcare and education. Key informants were asked
to state their views, but mixed responses were given. Some interviewees recognized
an existing disconnect and discussed attempts to improve it. Others thought that both
departments work relatively well together.
Page 126
Page 127
iv. Key Findings
KEY FINDINGS
DESCRIPTION
1) Training for
Professionals
Key informants believed
professional development and
training for service providers
was an area in which they
were moving forward. New
training initiatives were being
implemented (e.g. online training
for ASD in school district).
“There’s 40 hours of online training – 10
sessions - we have over 200 teachers enrolled
in it right now. It’s for teachers and student
assistants. It was developed by officials from
the four Atlantic provinces in partnership with
APSEA which is the Atlantic Provinces Special
Education Association and we’re very proud of
it. It’s very well done, very professional.”
2) Connection
between
Health and
Education
Key informants were proud
of their relationship across
departments and felt they worked
well together to provide services
to the ASD community.
“We meet with our counterparts in health
regularly. So, I guess, as policy developers,
we talk several times a year with scheduled
meetings and then, as things arise, we have
open conversations all the time. So I find at
this level the contact, the collaboration, is very
effective, very efficient. I wouldn’t be able to
speak at any other level.”
Key informants acknowledged
barriers to services for individuals
with ASD after Grade 3.
“The two different groups are serviced very
differently through community supports
program in that the children’s group, say up
to Grade Four, they’re still children who are
covered under the regional autism program
and are in receipt of the intensive ABA home
therapy based on best practice and the early
intervention model. That doesn’t mean that
once that’s finished, or once they age out
of that program, that they still don’t have
needs so, if they qualify, they can come to the
Community Behavioural Services Program.
That’s for anyone who is school age and up but
they have to meet the criteria of intellectual
disability and significant behaviour issues. So,
certainly that’s not inclusive of everyone who
might be on the spectrum who may have needs
still. So while I think that our service provision
to older children and adults is still quite good
within the context of what we do, I think there
is a gap in the system there.”
3) Access to
Services
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KEY FINDINGS
DESCRIPTION
4) Rural
Services and
Supports
Key informants were aware of
the limitations faced by families
in rural communities. They stated
that all individuals have a right to
the same services, but that there
are barriers to accessing them in
rural communities.
“Let’s differentiate between those living in
urban areas where there’s a broad range of
services and rural areas. Absolutely there’s a
big difference. No different than if I was living
in Labrador versus living in Eastern. There
are more services obviously. There’s a large
population here so there are more businesses
and more services available; that’s no different
than any other province or any other country.
The difference is that in the rural areas we
provide a higher cost or higher stipend for
transportation for people to get to community
inclusion activities. So, we do provide greater
transportation costs out in rural areas to
accommodate that. And in fact we’re probably
a little bit more flexible in regards to what we
would consider to be community inclusion out
in the rural areas, because they’re so limited.”
5) Consistency
and Retention
of ABA
Key informants reported
challenges with recruitment,
retention and consistency of ABA
workers.
“The biggest challenge that we face as a
service provider is indirectly related to us, but
it is directly related to how we can provide
service; it is the recruitment and retention of
the home therapist and the ability to deliver the
ABA program.”
6) Transition
Planning
Key informants recognized that
transitions were lacking for
individuals with ASD, particularity
in transitions into adulthood.
“The school district needs help with developing
transition plans for those exiting the schools
into the community.”
7) IQ 70
Criterion
The IQ 70 criterion was a
contentious topic. It was
recognized that services provided
should be based on functional
capabilities rather than IQ.
However, there was discussion
surrounding the financial
implications of removing the
criterion.
“When we’re on the same agenda, you know,
it’s getting pushed and it’s the same thing,
[it’s] one of our big challenges and a big
challenge for the Autism Society. It’s this whole
IQ determinant as to whether or not people
access services or not. And we agree; IQ is
outdated. It’s not something that we should
be even considering when we’re looking at
services. It should only be people’s functional
capabilities, but we don’t have that policy
change yet and until that policy changes we
can’t change anything, not how we operate or
do business, right.”
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6.0 Recommendations
and Conclusions
KEY FINDINGS
DESCRIPTION
8) Navigating
the System
Other groups expressed concern
with navigating the system but
key informants generally believed
the process was clear and easily
understood.
“Once the diagnosis is made they’re told who to
call and how to access services. So I don’t think
there’s any problem.”
9) ASNL Role
10) Supportive
Employment
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Key informants felt the role
of ASNL should be to lobby
government to provide services
and supports.
Key informants described the
need for more life skills training
in school that could lead to
more supportive employment
opportunities for individuals
with ASD. They discussed the
need for more involvement from
the school system and more
engagement from community
partners.
“I think that they would be the group that
would ultimately need to lobby government
for these things. I think they’re the group that
could certainly push the development of some
of these policies around creative, supportive
employment. I think it would be important
for them to put some emphasis on certainly
ensuring the planning process is there and as
well, I think the Autism Society should be the
first group that parents contact after they get a
diagnosis.”
“We wonder what happens to students when
they leave school. We know that some of
them have good things in place for them, but
for some others there aren’t. We have had
discussions about that on a number of children
because, you know, we try to work through
the transition plan with parents and once the
student gets to the end of their school career,
then the parents are looking for us for more
support and you know there’s a time when,
at 21, when students have to transition out,
and parents are left without the resources.
So we recognize that and would certainly be
open if there was. I’m thinking sometimes
we work with child and youth workers; I think
health has for a different purpose, but there
is someone specific we can task that we don’t
do as educators but we work with them as a
partnership. We work with the child and they
come in and they can do things that we can’t
do. I can’t send a teacher out in the community
to look for a placement at Sobeys. Some of our
guidance counselors, I think, do that stuff.”
In this chapter we offer recommendations based on data provided by the ASD
community and make suggestions for future research. We begin by acknowledging
some constraints in this body of work.
6.1 Constraints
Given the high level of participation and by using the broad definition of the ASD
community as comprised of caregivers, self-advocates, service providers, educators
and key decision makers, we believe the results reflect well the state of the ASD
community in NL. We are pleased with both the breadth and volume of participation in
the surveys and the interviews. There are some limitations:
• A large portion of this needs assessment was an online survey; therefore, it
was not accessible for individuals who may not have had access to the Internet.
However, given the near ubiquitous nature of the web, and the fact that most
individuals living with ASD seek assistance through a variety of channels, we
would expect this to be a relatively small proportion of the overall population.
• Reaching participants in the Labrador region was difficult; therefore, low
participant responses led to a less comprehensive picture of ASD in that region.
Additional research focused on Labrador would help better identify needs in that
region.
• Response rate by question varied because the online survey participants could
choose to skip questions.
• While we attempted to include a wide range of individuals in the semistructured interviews and we did have participation from across the province,
the qualitative data is not intended to be representative of the larger population.
The narratives shared by these individuals may not be representative of all
cases. Nonetheless, they characterize an important component of the needs
assessment. Understanding the impact of ASD on individuals and families will
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be unique in most cases. However, illuminating common themes is crucial in
understanding what the broad needs of this community are and how best they
can best be met.
• Self-advocates represented only a small portion of the response rate. This
could be for various reasons including lack of awareness of the survey, limited
access the survey, and limited ability to complete the survey. This particular
population is vulnerable and should be researched further to provide a better
understanding of their needs. However, we maintain that as the group most
affected by ASD, their views are vital and as such form an essential part of this
report.
• A significant challenge we cannot overcome is a large number of undiagnosed
cases in the province As such, the sample is only representative of those with
confirmed or suspected diagnoses of ASD. However, it is likely that unconfirmed
or undiagnosed cases may be on the lower end of the severity spectrum and as
such their needs may not be as great.
• As with all voluntary surveys, there remains a possibility that the self-selected
respondents are not representative of the larger population. However, we
believe that the strong response rate is indicative of broad representation of
the ASD community. In the absence of a comprehensive picture of ASD in the
province, we are unable to confirm the representativeness of the survey sample.
6.2 Recommendations to Address Issues of Need
The primary objective of this research was to gather data throughout the province
that could be used to guide ASNL when using evidence-based priority setting, to fill
gaps in the literature and to contribute to advancing policy and service improvement
for Newfoundlanders and Labradorians. The data provided was used to formulate a
series of recommendations that can be presented to stakeholders and government.
Priorities surfacing from this assessment are:
Recommendations
Advocacy
1.
Reduce wait times for assessment, diagnosis and intervention therapy – A significant
concern raised by many was the lengthy gap between referral and diagnosis. This is a time of
considerable uncertainty and stress for parents; a lengthy delay at getting a correct diagnosis
adds to tension and postpones intervention and treatment. Most evidence suggests delaying
treatment results in poorer outcomes. An investment in expediting diagnoses would serve to
reduce stress and allow caregivers to develop interventions and effective treatment plans. It
would improve outcomes just by moving towards a treatment plan more quickly.
2. Remove the IQ 70 criterion – The pervasive view is that the IQ 70 criterion is severely limiting,
ineffective and acts as a barrier to individuals with a recognized and diagnosed condition
getting access to services. This criterion should be removed in Newfoundland Labrador and/or
an “adaptive function measure” should be added to the criteria.
3. Greater financial and other supports are needed for families and individuals with ASD,
particularly those from lower socio-economic backgrounds – Many parents take on the
role of primary advocates for their child. They learn “the system” and learn services the child
is entitled too, and they advocate for these. In other cases, parents are overwhelmed and
not able to successfully navigate the healthcare and education systems; they often lack the
financial resources to access private services. This is a significant inequity that does not occur
for other physiological health conditions. It is a major system failure when families with ASD
do not get the services they require because a parent was unaware that the service existed or
was unable to successfully advocate for their child to access that service. More support should
be available for those individuals who need to access private services that cannot be provided
by public providers in a timely fashion.
Outreach
1.
Increase awareness – There is a view that ASD is misunderstood in the community and that
the capabilities of individuals with ASD are vastly under-estimated. Recent reports in the media
suggest the lack of understanding of ASD remains pervasive and prevents individuals with ASD
from fully participating in their communities.
2. Improve outreach in rural communities across Newfoundland Labrador – Rural communities
commonly have reduced access to services. Understandably, longer commute times and fewer
services exist in small communities; however, it is important that individuals receive equal
opportunity to services and care.
3. Assist newly diagnosed families and individuals with “navigating the system” services –
There is significant concern that some families of individuals with a recent diagnosis of ASD are
not be able to effectively navigate the system. Many families expressed being overwhelmed
with not knowing and understanding services they could access and not knowing how to
access these services. ASNL could perhaps better fill this gap for families and provide more
supportive care and guidance for newly diagnosed individuals with ASD.
4. Develop a resource map of ASD friendly services across the province – Due to various
sensory sensitivities and other symptoms, individuals with ASD often have difficulty accessing
services and activities. A list of ASD-friendly services with accommodation details would be a
very useful resource - ASNL can take the lead on development of this resource.
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Recommendations
Recommendations
Programs
1.
More programming is needed across the lifespan – Caregivers wanted to see more
programming from ASNL. Programming and services for adults are woefully lacking. A
consistent theme across all respondents was that more services are needed for all but
especially for adults with ASD. We suggest that ASNL assess their current programming and
seek to improve and add to it. However, this has to be done in consultation with a broad range
of government departments; funding should be secured and provided so programming can be
made available province-wide.
2. Job coaching and life skills programs for high functioning adolescents and adults with
ASD – A recurrent theme from the respondents was the need for additional supports for
high functioning individuals with ASD. These individuals, with some additional supports and
accommodations, could achieve a much higher degree of independence and will be more likely
to reach their full potential.
Services and Supports
1.
Better coordination of care and case management within and across jurisdictions – There
was some disagreement on success with coordinating care across service providers and
jurisdictions. At the policy level, there seemed to be a view that healthcare and education can
successfully collaborate on providing care to individuals with ASD. However, at the service
delivery level, and from the perspective of caregivers, this was not the case. There was a
belief that the systems were disconnected from each other and there was no clear sense of
collaboration between the two departments. In other instances, caregivers reported finding
it challenging to navigate the system. This presents a compelling argument for greater case
management, with an appropriate individual assigned to help individuals and families access
and obtain needed services to which they are entitled. Furthermore, there were concerns that
far too much case management fell to parents and caregivers. There was significant concern
that some families might not be able to adequately navigate the bureaucracy and effectively
advocate for their child. To reinforce a theme, it is unfortunate to be poor and it is unfortunate
to have a child with ASD. However, it is unjust to not provide those with significant challenges
of their own with support at accessing the best course of action possible for dependents with
ASD. Effective case management is critical, particularly for those families struggling to cope.
2. Develop a list of services used by individuals with ASD and monitor/track wait times –
A number of respondents across the spectrum identified wait times for services as being
an important concern. These can include clinical diagnoses, educational assessments and
treatments. It is vital that individuals with ASD have timely access to these services and
as such, protracted wait times at any point reduce the likelihood of positive outcomes and
increases stress and strain on caregivers.
3. Develop mental health services for youth and adults with ASD – Based on extensive data
gathered, mental health issues were highly prevalent in youth and adults with ASD. Anxiety,
depression, ADHD, and OCD were common issues heard from study participants. Mental health
services should be designed to meet the specific need of individuals with ASD.
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4. Better transition planning into, between and from schools, and into adulthood – An
observed deficiency in the care of individuals with ASD is a transition plan into adulthood. This
was noted by service providers in both healthcare and education. Individuals with ASD are
extremely vulnerable and planning for transition requires great care. We believe part of the
reason transition planning is poor is that there is very little to which these individuals can be
transitioned. The highest functioning ASD individuals may be able to enroll in postsecondary
education or find employment. However, many other individuals who, with appropriate
supports, coaching and skill development, could advance to further education or employment
are left to languish. Higher needs individuals with ASD have few options for programming and
tend to spend an inordinate amount of time at home. Better programming for adults has to be
developed first, for the full spectrum of ASD individuals. Then careful planning for the transition
to adulthood can become the priority.
5. Increase flexibility when providing ABA therapy – Service providers stated that ABA was
inflexible to meet their clinical requirements. ABA therapists should be more flexible in
their service delivery and should seek to collaborate with other service providers to ensure
consistency.
6. Greater flexibility is needed by bureaucrats to provide needed services to individuals
with ASD – Many respondents indicated frustration with the services ceasing to be available
to individuals who fail to meet certain criteria (such as age or IQ). ASD is unlike many other
conditions; how it manifests itself and the associated co-morbidities are complex. Providers
need use of a wide range of tools to help these individuals unlock their potential. What works
for one individual may not work for another, and not being able to offer or continue the
provision of a service because an individual fails to meet certain criteria is highly limiting and
frustrating. Policy makers must recognize the complexity and profound impact that ASD has
on individuals and their families and equip service providers with every possible tool to help
improve the lives of these individuals and their families.
7. Implement more respite care and programs to get higher needs ASD adults into the
community – Higher needs adults with ASD were a particular concern because there is limited
programming available for them. After these individuals leave the school system, the onus of
providing for their care falls almost entirely on their families. It was noted that the proportion
of caregivers not working was highest among those with adult children, most likely reflecting
the additional need placed upon them to provide care. This is profoundly unfair. The emotional
burden of caring for a child or adult with ASD is significant enough. Heaping additional financial
burden on these families is unjust.
8. Develop a comprehensive residential strategy for individuals with ASD – Self-advocates and
parents of adults with ASD were concerned about the lack of housing options. Individuals with
ASD should be encouraged to be as independent as possible; a lack of housing alternatives is a
severe limitation to achieving independence.
9. Review student assistant allocations and contracts – Survey respondents reported that
student assistants were an under-utilized resource and that their contractual terms were not
well suited to the provision of support for ASD students. More student assistants would be
beneficial, they should be more closely linked with individual students so they have better
familiarity of the student and better understand how to navigate potential difficulties in the
learning and social environment.
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Recommendations
Recommendations
10. Focus a higher proportion of services on life skills training – A large number of respondents
from varying roles expressed concern about the lack of education in basic life skills for higher
needs individuals with ASD. An inventory of services currently provided to individuals with ASD
should be completed, and any gaps identified.
1.
Develop training programs for primary healthcare providers, particularly family physicians,
public health nurses and dentists, to recognize signs of ASD – Given the prevalence of
ASD and the role of public health nurses, family doctors and dentists in coordinating care for
individuals, there should be more training in Family Medicine regarding diagnosing and treating
ASD. In addition to incorporating sessions into both the undergraduate and post-graduate
family medicine programs, Continuing Medical Education on ASD should be made compulsory
for all primary healthcare workers as it is almost inevitable that they will have patients who are
on the spectrum. ASNL should ensure that this is completed and make it an advocacy priority.
2. Mandatory ASD in-service training for all school teaching, guidance and administrative
staff – While there are opportunities for individuals in the education system to access training,
we believe the pervasiveness of ASD, and the unique issues accompanying it, warrant all
teaching, guidance and administrative staff developing at least a minimal understanding of the
condition and how best to interact and work with an individual with ASD.
3. Require that a proportion of school staff be trained in ASD to a higher level – In addition
to this basic training, a proportion of staff should be trained at a higher level so they can
better understand how to structure services and coordinate resource allocation for ASD
students. Advanced knowledge and skills are essential to ensure appropriate learning/social
environments are created for ASD students.
4. Develop a training guide to determine basic and advanced training that should be available
in every school – An important role for ASNL will be to determine what expertise should be
available in each school at the basic and advanced levels. Given the widely reported scarcity
of resources in the current environment, it is critical to identify what expertise is necessary at
each school and determining what training is necessary and to achieve this expertise.
5. Establish a time frame (e.g. 2-3 years) for schools to achieve this level of expertise – Each
school should be required to develop a plan to reach the prescribed level of expertise and
should identify clear milestones to reach this. The NL English and French School Districts,
and the Department of Education and Early Childhood Development, should fully support this
effort.
Employment
1.
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An Employers’ Steering Committee should be formed to increase participation of
individuals with ASD in the labour force – This Steering Committee of major employers and
their representatives would be charged with identifying strategies to integrate individuals
with ASD into the workforce. Every stakeholder group that participated in this study identified
employment opportunities for ASD adults as being critical. Major employers need to be
involved with determining the best way to do this.
2. Identify lower needs adults with ASD and work towards skill development and job coaching
with the view to job placements – An area that was raised from numerous quarters –
most importantly the self-advocates – was the need for higher functioning ASD individuals to
have access to job coaching and other forms of skill development supports to increase their
employability. There was a consensus that higher functioning ASD individuals could make an
important contribution to an employer and that this would benefit both the employer and the
individual. Persons with ASD face very real obstacles to entering and staying in the workforce;
however, with appropriate accommodations, there is belief that that they are employable and
bring significant skills to a prospective employer. It is a fundamental role of government to
ensure all individuals have a fair opportunity to reach their potential and make a contribution
to society through their work. Programming to facilitate this for the ASD population would help
achieve this outcome.
Medical Registry
1.
A medical registry of ASD individuals should be established immediately for clinical
and research purposes – Highlighted in this report is a lack of baseline statistics on the
incidence and prevalence of individuals with ASD. A registry would allow for better statistical
representation and with regular data collection, vital evidence could be collected on the
services being accessed by these individuals and their effectiveness.
6.3 Comparative Analysis
When comparing the outcomes of the secondary data analysis and best practices in
Section 2.0, it is clear that the ASD community of NL faces challenges similar to other
jurisdictions and is in need of strategic planning and implementation of practices.
When we analyze our research and compare it to that of the secondary data analysis,
clear comparisons exist.
For preschool age children, early intervention is imperative. This includes earlier access
to referral, diagnosis, and services. From our research, caregivers, self-advocates,
and service providers described long wait times for the above services. Caregivers in
particular described struggles to get their children access to services and supports.
We know from best practice research that early intervention is fundamental to
long-term success in individuals with ASD. Evidence-based best practices exist; for
example, the United Kingdom has comprehensive legislation and policy to support
individuals with ASD from birth to death.
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For school-aged children, interventions within school were found to be central to
the success of individuals with ASD. Our research indicates that clear direction on
transitions, inclusion, and life skills training were all lacking in school programming.
Section 2.0 describes best practices that illustrate models for social intervention
among other evidence-based care models within schools.
The adult ASD population in NL has challenges with mental health issues as well as
the lack of supportive employment opportunities. While the body of literature related
to adults with ASD is still emerging, we know that after individuals finish school their
options are limited. Further, if the proper supports are not in place, the economic
investments in these individuals during childhood will have been wasted. Best
practices for this population highlight policies that support individuals throughout
adulthood with respect to housing, finances, health, and employment.
However, the increasing prevalence and widespread nature of ASD and the acute need
for services and interventions from preschoolers to adults suggests that programming
should revert to appropriate government departments as only they have the scope
and reach to offer services to all Newfoundlanders and Labradorians. Relying on a
soft-funded NGO to provide services that families so desperately need is a major
shortfall of government and should be addressed immediately. As a community with
substantial, and now thoroughly documented needs, the provincial government must
step forward and ensure that programming for individuals with ASD is developed and
made available province-wide. This support must range from those who are highfunctioning and perhaps need less support to reach their full potential as individuals,
to those individuals who are on the higher needs end of the spectrum and need
comprehensive programming, support and respite services.
This is a need that will not diminish and the provincial government must make a
commitment to support the ASD community, rather than rely on agencies like ASNL
to step up and fill the gap in service provision that government itself should be
addressing. Table 6-1 prioritizes our recommendations (1 being highest and 3 the
lowest) organized by target age group(s) and ASNL’s role moving forward.
6.4 ASNL Moving Forward
There is a clear need for more programming across the province. A recurring theme
emerging from the entire ASD community is that more programming, more services,
more outreach and more resources are needed to adequately meet the needs of this
community. ASNL has done remarkable work in providing support to this community
on a limited budget and with significant fundraising efforts and benefactor support.
In locations where there is an active ASNL presence, there is more programming
available. However, as an NGO, it is not possible for the ASNL to reach all corners of
the province and provide programming and services to all of those in need.
The challenge for both the provincial government and ASNL is determining who
should provide these services. ASNL is in somewhat of an awkward position as a
service provider. In reality, it is an advocacy group with the primary role of advocating
and lobbying government, actively engaging in outreach, and educating service
providers and the public regarding best practices for individuals living with ASD.
ASNL emerged as a service provider effectively because government departments
failed to offer these services. In this capacity, ASNL has filled a significant gap and
offered necessary support to many families across the province. They have improved
the lives of their clients and they have given caregivers hope, when previously there
may have been none.
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TABLE 6-1: Recommendations by Priority, Target Age Group,and ASNL’s Role
RECOMMENDATIONS
RECOMMENDATIONS
PRIORITY
TARGET AGE
GROUP
AUTISM
SOCIETY ROLE
Advocacy
1
Reduce wait times for assessment,
diagnosis and intervention therapy
1
Preschool
Advocacy
2
Remove the IQ 70 criterion
1
Life Span
Advocacy
3
Greater financial and other supports are
needed for families and individuals with
ASD, particularly those from lower socioeconomic backgrounds
2
Life Span
4
Assist newly diagnosed families and
individuals with “Navigating the System”
services
5
1
Outreach
Develop a resource map of ASD friendly
services across the province
1
Life Span
Outreach
6
Increase awareness
2
General
Outreach
7
Improve outreach in rural communities
across Newfoundland Labrador
2
General
Outreach
Programming
8
1
Life Span
Increased Program
Offerings pending
Government Funding
Services and Supports
9
Develop mental health services for youth
and adults with ASD
1
Life Span
Advocacy
10
Better transition planning into, between
and from schools, and into adulthood
1
Preschool
School-Age
Advocacy &
Support to
School System
11
Better coordination of care and case
management within and across
jurisdictions
2
Life Span
Advocacy
12
Develop a list of services used by
individuals with ASD and monitor/track
wait times
2
Life Span
Advocacy
13
Develop a comprehensive residential
strategy for individuals with ASD
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AUTISM
SOCIETY ROLE
Review student assistant allocations and
contracts
2
School-Age
Advocacy
15
Focus a higher proportion of services on
life skills training
2
Life Span
Advocacy &
Programming
16
Greater flexibility is needed by
bureaucrats to provide needed services
to individuals with ASD.
2
General
Advocacy
17
Increase flexibility when providing ABA
therapy
3
Preschool
School-Age
Advocacy
18
Implement more respite care and
programs to get higher needs ASD adults
into the community
3
Adult
Advocacy
Preschool
School-Age
More programming is needed across the
life span
TARGET AGE
GROUP
14
Advocacy
Outreach
PRIORITY
2
Adult
Advocacy
19
Mandatory ASD in-service training
for all school teaching, guidance and
administrative staff
1
School-Age
Advocacy
20
Develop training programs for primary
healthcare providers, particularly family
physicians, public health nurses and
dentists, to recognize signs of ASD
2
Life Span
Advocacy
21
Require that a proportion of school staff
be trained in ASD to a higher level
2
School-Age
Advocacy
22
Develop a training guide to determine
basic and advanced training that should
be available in every school
2
School-Age
Advocacy &
Produce Document
23
Establish a time frame (e.g. 2-3 years) for
schools to achieve this level of expertise
2
School-Age
Advocacy
Employment
24
An Employers’ Steering Committee
should be formed to increase
participation of individuals with ASD in
the labour force
1
Adult
Advocacy
25
Identify lower needs adults with ASD and
work towards skill development and job
coaching with the view to job placements
1
Adult
Advocacy &
Programming
3
Life Span
Advocacy
Medical Registry
26
A medical registry of ASD individuals
should be established immediately for
clinical and research purposes
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6.5 Advocacy Strategies for ASNL
G. Media & Advocacy
A. Create a task list from the recommendations • Task monitoring • The media – radio, television, press and online media – have a particular role to
play in public advocacy initiatives, especially campaign-based approaches for
support.
H. Evaluation
• Track progress of recommendations
B. Build advocacy capacity on behalf of the ASD community • Vulnerable individuals/families face systemic barriers in advocating for
themselves. ASNL need to use this report to be the “voice” on issues at hand for
these families.
• Throughout the implementation phase it is important to monitor the process
and track the success of the items on the task list. Continued evaluation of
feasibility and success is essential.
6.6 Future Research
C. Campaign for policy change
• Using evidence-based research:
Moving forward, Figure 6-1 demonstrates areas for future research.
(i) Identify problems and policy issues;
FIGURE 6-1: Future Areas of Research
(ii) Define goals;
(iii) Consult and build relationships; and
Evaluation of
wait times for
diagnosis and
services
(iv) Establish credibility as ASNL.
D. Ensure public accountability
• Advocacy efforts should commence with observation and monitoring of the
achievement and effectiveness of policies already in place.
E. Consult and build relationships with key stakeholders
• Building relationships is intrinsic to any successful advocacy effort. Before
tackling recommendations, it is important to engage with other organizations,
especially those sharing similar goals and interests.
F. Get the message across
Residential
options and
strategies for
adults with
ASD
• Good communication of the key recommendations is imperative. This requires
attention to the message, the audience and the means of delivery. The message
needs to be clear: it should explain what is being proposed, why it is needed,
and what difference it will make. It also needs to be compelling: it should be
crafted to the interests and knowledge of the audience.
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Feasibility of best
practices and models
of care in NL
Prospective
methods for
counting and
tracking individuals
with ASD
Evaluate
options for
supportive
employment
opportunites
Evaluation of
mental health
services for
youth and
adults
Page 143
References
6.7 Conclusions
The data acquired from this Needs Assessment Survey may also be beneficial in the
dialogue with municipal, provincial, and federal leaders and policy-makers. It presents an
overview of the current state of ASD, including the gaps and needs of the ASD community
throughout Newfoundland Labrador. Best practices of other jurisdictions across the
country should also be examined.
The ASD community in Newfoundland Labrador responded to the call to participate in
this needs assessment survey with tremendous enthusiasm. They provided a wealth of
knowledge needed to assist with evidence-based planning.
A major strength of this needs assessment survey is the wide diversity of respondents
studied. Caregivers, self-advocates, service providers, educators and key informants
brought a range of perspectives that allowed for a comprehensive overview of the ASD
community in NL.
The use of mixed methods was another strength of this needs assessment. Quantitative
research was enhanced by the stories we heard from individuals within the ASD
community.
Services in the ASD community were discussed at length in this study. Participants from all
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that regardless of respondent type, age of individual with ASD, and supports accessed,
that more services and programming are required. The most significant access barriers
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private services when those services were not provided by government departments and
agencies, or were not provided in a timely fashion.
An increase in mental health issues from school-age children into adulthood was
observed, with the lack of associated supports noted as a concern for the ASD community.
Strategies should be put in place to help support these individuals. Likewise, transitional
care was deficient across all age groups, especially as children transitioned into adulthood.
Providing individuals with appropriate care into their adult years – including supportive
employment opportunities – will allow for a greater sense of purpose and reduce the
burden on families accordingly.
Professional development for all service providers and educators was recognized as a
major area for improvement. Appropriate training and awareness of ASD is required on a
continuous basis.
Finally, greater advocacy for ASD in the community is essential.
Page 144
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Autism Society Newfoundland Labrador
ASNL Headquarters
70 Clinch Crescent
P.O. Box 14078
St. John’s, NL A1B 4G8
T (709) 722-2803
F (709) 722-4926
ASNL Eastern
Regional Office
105 Manitoba Drive
P.O. Box 9194
Clarenville, NL A5A 2C2
T (709) 466-7177
ASNL South Central
Regional Office
7 High Street 2nd Floor (Physical)
P.O. Box 133
Grand Falls-Windsor, NL A2A 2J4
T (709) 489–4190
F (709) 489–0694
ASNL Western
Regional Office
40 Main Street
Corner Brook, NL A2H 1C3L
T (709) 637–7450
www.autism.nf.net

report - Autism Society of Newfoundland and Labrador

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