ASNL Executive Committee: Project Team Submitted to

REPORT:Needs Assessment Survey Autism Community, Newfoundland Labrador

Submitted to:Autism Society Newfoundland and Labrador

October 2015

Produced with support from:MITACS

ASNL Executive Committee:John J. Barry, PresidentSuzanne Kenny, Vice-PresidentJoe McKenna, TreasurerDr. Fereidoon Shahidi, SecretaryScott Crocker, Executive DirectorTess Hemeon, Advocacy Manager

Project TeamDr. Richard AudasDevonne RyanDr. Kristin Harris WalshShauna WellsPatrick Murphy

Needs Assessment of the Autism Spectrum Community of Newfoundland and Labrador

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

Recommendations 10

Conclusion 11

1.0 Introduction to Autism Spectrum Disorder 12

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) 19

1.6 Other Autism Support Services in NL 20

1.7 Needs Assessment 21

2.0 Secondary Data Analysis 22

2.1 Trends in Recent ASD Research 22

2.2 Best Practices 26“Autism itself is not the enemy… the barriers to development that are included with autism are the enemy.”

– Frank Klein (Klein, 2008)

3.0 Methods 32

3.1 Purpose 32

3.2 Qualitative Research 33

3.3 Quantitative Research 33

3.4 Conclusion 37

4.0 Respondents Receiving Services 38

4.1 Caregivers 38

4.2 Self-Advocates 80

5.0 Respondents Providing Services 94

5.1 Healthcare Sector 94

5.2 Education Sector 111

5.3 Key Informants 123

6.0 Recommendations and Conclusions 131

6.1 Constraints 131

6.2 Recommendations to Address Issues of Need 132

6.3 Comparative Analysis 137

6.4 ASNL Moving Forward 138

6.5 Advocacy Strategies for ASNL 142

6.6 Future Research 143

6.7 Conclusions 144

References 145


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List of Abbreviations

ABA - Applied Behaviour Analysis TherapyAD - Autistic DisorderADD - Attention Deficit Disorder ADHD - Attention-Deficit/Hyperactivity DisorderAMSE - Autism Mental Status ExamANN - Artificial Neural Networks AS - Asperger Syndrome ASD - Autism Spectrum DisorderASNL - Autism Society, Newfoundland LabradorCASDA - The Canadian Autism Spectrum Disorders Alliance CBT - Cognitive Behaviour TherapyCDC - Center for Disease ControlCDD - Childhood Disintegrative DisorderCLD - Culturally and Linguistically DiverseCMS - Child Management SpecialistCOST - Cooperation in Science and Technology DAWBA - Development and Well-Being Assessment DBD - Disruptive Behaviour DisorderESDM - Early Start Denver ModelFaHCSIA - Department of Families, Housing, Community Services and Indigenous AffairsHF-ASD - High Functioning Autism Spectrum DisorderIBI - Intensive Behavioural InterventionID - Intellectual Disabilities IEP - Individualized Education ProgramISSP - Individualized Student Support Plan NEDSAC - National Epidemiological Database for the Study of Autism in CanadaNL - Newfoundland and LabradorOCD - Obsessive Compulsive DisorderPARS - Paediatric Anxiety Rating ScalePDD - Pervasive Developmental Disorder PDD-NOS - Pervasive Developmental Disorder, Not Otherwise SpecifiedPOT - Parent-Child Interaction TherapyRDI - Relationship Development InterventionRTT - Rhett’s Syndrome SUD - Substance use DisordersVIPP-AUDI - Positive Parenting Adaptive to Autism


Page 3Needs Assessment of the Autism Spectrum Community of Newfoundland and LabradorPage 2

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 4-19: ASNL Membership and Service Use 72

TABLE 4-20: Top 5 Barriers To Services, NL Needs Assessment and CASDA 87

TABLE 5-1: Service Provider Demographic Information 96

TABLE 5-2: Health Service Providers by Age/Region 98

TABLE 5-3: Course of Care As Reported by Service Providers 99

TABLE 5-4: Elements of Diagnosis Process, Interventions, and Co-Morbidities 100

TABLE 5-5: IQ 70 Criterion 102

TABLE 5-6: Barriers to Services Identified by Service Providers In NL and CASDA 103

TABLE 5-7: Transitional Care Provided by Service Providers 104

TABLE 5-8: Training Opportunities for Service Providers 108

TABLE 5-9: ASNL Membership and Access to Programs for Service Providers 109

TABLE 5-10: Full-Time Versus Part-Time Schooling for Students with ASD 114

TABLE 5-11: Transition Planning Between Grade, Between Schools, and Into Adulthood 115

TABLE 5-12: Resources Available for Educators by Region 118

TABLE 5-13: Professional Development for Educators by Region 120

TABLE 6-1: Recommendations by Priority, Target Age Group, and ASNL’s Role 140

TABLE 3-1: Number of Qualitative Interviews 33

TABLE 3-2: Frequency and Percentage of Each Respondent 36

TABLE 3-3: Frequency and Percentage of Each Respondent by Region 36

TABLE 4-1: Caregiver Breakdown by Relationship to Individual with ASD 38

TABLE 4-2: Demographic Characteristics of Caregivers by Age of Individual with ASD 40

TABLE 4-3: Caregiver Rating of Everyday Skills and Behaviours 42

TABLE 4-4: Caregivers by Age Group of Child with ASD and by Region 44

TABLE 4-5: Demographic Information Broken Down by Region 45

TABLE 4-6: Diagnosis, Referral, and Initial Assessment 47

TABLE 4-7: Services Related to ASD 50

TABLE 4-8: Barriers to Services Compared to CASDA 51

TABLE 4-9: Satisfaction with ASD Related Services 52

TABLE 4-10: Commute Time to Health Services Broken Down by Geographic Region 54

TABLE 4-11: Caregiver Responses to Child’s Kindergarten Experience 56

TABLE 4-12: Caregiver Responses to Child’s Grade School Experience 58

TABLE 4-13: Living Arrangement for Adults with ASD 60


Needs Assessment of the Autism Spectrum Community of Newfoundland and LabradorPage 4

FIGURE 4-1: Caregivers Broken Down by Region 44

FIGURE 4-2: Region Breakdown in NL 55

FIGURE 4-3: Community involvement- Adults with ASD 61

FIGURE 4-4: Difficulty in Accessing Any Primary Healthcare Services as an Adult 62

FIGURE 4-5: Access and Satisfaction with ASNL by Region 73

FIGURE 4-6: Caregivers Priority for The Role of ASNL 74

FIGURE 4-7: Priority of The Role of ASNL Broken Down by Age Group 74

FIGURE 4-8: Priority of Role of ASNL by Geographic Region 75

FIGURE 4-9: Gender of Self-Advocates 80

FIGURE 4-10: Education of Self-Advocates 80

FIGURE 4-11: Housing Arrangement for Self-Advocates 81

FIGURE 4-12: Means of Transportation for Self-Advocates 81

FIGURE 4-13: Employment Status of Self-Advocates 82

FIGURE 4-14: Self-Advocates Broken Down by Region 83

FIGURE 4-15: Referral for Diagnosis Given by Health Professional 84

FIGURE 4-16: Diagnosis Given by Health Professional 84

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 4-22: Self-Advocates Awareness of IQ 70 Criterion 90

FIGURE 4-23: Financial Burden of ASD Services 90

FIGURE 4-24: Self-Advocates and ASNL 91

FIGURE 5-1: Type of Respondent 94

FIGURE 5-2: Service Providers Broken Down by Age Group They Service 95

FIGURE 5-3: Service Providers Broken Down by Region 98

FIGURE 5-4: Age Group with Greatest Access to Services 106

FIGURE 5-5: Age Group with Most Challenges Accessing Services 106

FIGURE 5-6: Training Opportunities for Service Providers 108

FIGURE 5-7: Role of Education Respondent in The School System 112

FIGURE 5-8: Geographic Representation of Education Respondents 112

FIGURE 5-9: Breakdown of Education Respondents by Region 113

FIGURE 5-10: Transition Planning Between Grades, Schools, and Adulthood 116

FIGURE 6-1: Future Areas of Research 143


Page 7Needs Assessment of the Autism Spectrum Community of Newfoundland and Labrador

Executive Summary

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-year-old 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.

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

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.

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.

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.

• 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 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:

• 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.

• 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

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.

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).

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

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 province-wide. 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.



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).

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.

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

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).

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).

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;

• 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

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.

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 pre-register 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.



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

2.0 Secondary Data Analysis 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

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.

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,

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 system-wide 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.

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

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 evidence-based 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.



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.

3.0 Methods3.2 Qualitative Research

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.

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.

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.

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

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.



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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

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.

3.4 Conclusion

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.



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.

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

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.

4 While not all of these providers are able to make formal diagnoses, some individuals responding did not receive a formal diagnosis.

4.0 Respondents Receiving Services



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TABLE 4-2: Demographic Characteristics of Caregivers By Age of Individual with ASD5

DEMOGRAPHICTOTALSN (%)

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

Male 209 (83.3) 51 (79.7) 126 (88.7) 32 (71.1)

Female 42 (16.7) 13 (20.3) 16 (11.3) 13 (28.9)

Age of Parent/Guardian

20-29 years old 23 (9.2) 16 (25.4) 4 (2.8) 3 (6.3)

30-39 years old 86 (34.3) 37 (58.7) 48 (34.0) 1 (2.1)

40-49 years old 94 (37.4) 7 (11.1) 78 (55.3) 9 (19.1)

50-59 years old 29 (11.6) 1 (1.6) 9 (6.4) 19 (40.4)

60+ years old 19 (7.6) 2 (3.2) 2 (1.4) 15 (31.9)

Relationship to Individual with ASD

Parent 230 (91.6) 59 (92.2) 129 (90.8) 42 (93.3)

Extended Family 11 (4.4) 4 (6.3) 6 (4.2) 1 (2.2)

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)

Marital Status

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)

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.

DEMOGRAPHICTOTALSN (%)




Education of Parents

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)

College Diploma 105 (41) 26 (40.6) 63 (44.4) 13 (27.7)

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)

Other 9 (3.5) 3 (4.7) 3 (2.1) 3 (6.4)

Number of children living in household

Zero 23 (9.4) 3 (4.8) 4 (2.9) 16 (34.8)

One 85 (34.7) 23 (36.5) 52 (38.0) 10 (21.7)

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)

Four 6 (2.5) 0 (0.0) 6 (4.4) 0 (0.0)

Seven 1 (0.4) 1 (1.6) 0 (0.0) 0 (0.0)

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

RANKINGTOTALN (%)




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)

Object Use

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)



Not Sure 14 (6.5) 2 (3.6) 8 (6.3) 4 (11.8)

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)



Not sure 21 (9.7) 5 (8.9) 10 (7.9) 6 (17.1)

Adaptation to Change

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)



Not sure 3 (1.4) 0 (0.0) 0 (0.0) 3 (8.6)

Activity Level

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)



Not sure 4 (1.8) 2 (3.7) 1 (0.8) 1 (2.8)

RANKINGTOTALN (%)




Verbal Communication

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)



Not sure 2 (0.9) 0 (0.0) 2 (1.6) 0 (0.0)

Non-verbal Communication

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)



Not sure 15 (7.2) 2 (3.6) 12 (10.0) 1 (3.0)

ii. Geographic Distribution

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.



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FIGURE 4-1: Caregivers Broken Down by Region

Western

North East Avalon

Eastern

Labrador

South Central

Avalon

26%

31%

13%

13%

2%15%

TABLE 4-4: Caregivers by Age Group of Child With ASD and by Region

REGIONTOTALN (%)




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)

TABLE 4-5: Demographic Information Broken Down by Region

AVALONN (%)

NORTH EAST AVALONN (%)

EASTERNN (%)

SOUTH CENTRAL N (%)

WESTERNN (%)

LABRADORN (%)

Age of Caregiver

20-29 10 (14.9) 4 (4.8) 3 (7.9) 3 (12.0) 3 (8.6) 6 (60.0)

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)

Relationship to Individual with ASD

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)

Marital Status

Married 50 (73.5) 61 (74.4) 29 (78.4) 18 (66.7) 24 (68.6) 3 (75.0)

Separated/Divorced 9 (13.2) 12 (14.6) 2 (5.4) 3 (11.1) 2 (5.7) 0 (0.0)

Single 9 (13.2) 7 (8.5) 5 (13.5) 6 (22.2) 8 (22.9) 1 (25.0)

Widowed 0 (0.0) 2 (2.4) 2 (2.4) 1 (2.7) 1 (2.9) 0 (0.0)

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)



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iii. Analysis

(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.

6 While not all of these providers are able to make formal diagnoses, some individuals responding did not receive a formal diagnosis.

TABLE 4-6: Diagnosis, Referral, and Initial Assessment

DIAGNOSIS AND ASSESSMENT

TOTAL N (%)




Received Formal Diagnosis

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)

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)




N/A 6 (3.5) 0 (0.0) 3 (3.3) 3 (11.1)



Page 49Page 48

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.

(b) Healthcare Services and Training

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.

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

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%);

• Negative experiences (10%);

• 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.



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TABLE 4-7: Services Related to ASD

SERVICESTOTALN=%

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)

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

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)

SERVICESTOTALN=%




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

* 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

NL NEEDS ASSESSMENT CASDA

Not enough resources 47.6% Not enough resources 58%

Lack of trained professionals 29.9% Lack of trained professionals 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%



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TABLE 4-9: Satisfaction With ASD Related Services

SERVICE




Satisfaction with Services

Speech LanguageVery SatisfiedSomewhat SatisfiedSomewhat DissatisfiedVery DissatisfiedN/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)

OTVery SatisfiedSomewhat Satisfied Somewhat DissatisfiedVery DissatisfiedN/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 SatisfiedSomewhat SatisfiedSomewhat DissatisfiedVery 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 DoctorVery SatisfiedSomewhat SatisfiedSomewhat DissatisfiedVery 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)

PsychiatristVery SatisfiedSomewhat SatisfiedSomewhat DissatisfiedVery 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)

ABAVery SatisfiedSomewhat SatisfiedSomewhat DissatisfiedVery 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)

RespiteVery SatisfiedSomewhat SatisfiedSomewhat DissatisfiedVery Dissatisfied

0000

5 (38.5)1 (7.7)4 (30.8)3 (23.1)

3 (25.0)4 (33.3)1 (8.3)4 (33.3)

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.



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FIGURE 4-2: Region Breakdown In Newfoundland And Labrador

WESTERNREGION

CENTRALREGION EASTERN

REGION

AVALONREGION

LABRADORREGION

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 TrainingOf 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.

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 minutes30-60 minutes1-2 hours>2 hours

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)

OT


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)

Physiotherapy


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)

Psychiatry


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)

ABA

<30 minutes30-60 minutes1-2 hours >2 hours

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)

Respite


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.



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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).

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.

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

TOTALN (%)




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)

Educators Well Trained

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)

Satisfied with Kindergarten Experience

Very satisfied 12 (9.0) 2 (10.0) 10 (11.1) 0 (0.0)




Bullying in Kindergarten

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)

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.



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TABLE 4-12: Caregiver Responses to Their Child’s Grade School Experience

GRADE SCHOOL EXPERIENCE

TOTAL N (%)




Type of Schooling

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)

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)




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)

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.



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TABLE 4-13: Living Arrangement for Adults With ASD

LIVING ARRANGEMENT NL NEEDS ASSESSMENT CASDA

At Home 92% 80%

Provincial Supportive Housing 5% 7.6%

Independently 0% 6.8%

With Relative 0% 1.3%*

Other 3% 4.3%

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%).

TABLE 4-14: Mental and Physical Challenges Compared to CASDA

MENTAL OR PHYSICAL CHALLENGE NL NEEDS ASSESSMENT CASDA

ADHD 83% 35%

Anxiety 64% 71%

Depression 26% 33%

Behavioural issues 64% 55%

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 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

0

5

10

15

20

OtherHobby Acitivities

EmploymentVolunteerismRecreational Programming

ASNL Programming



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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%)Dentist (10.6%)

Family Physician

(8.5%)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%)

• Physiotherapy (92%)

• Family Doctor (83%)

• Mental Health Treatment (78%)

• Life Skills Training (77%)

• Psychiatry (75%)

• Respite (66%)

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.

(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).



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TABLE 4-15: Caregiver Financial and Insurance Information

FINANCIAL AND INSURANCE INFORMATION

TOTAL 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)

Household Income

<$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)

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)

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

FINANCIAL AND INSURANCE INFORMATION

TOTAL 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)

Have insurance coverage

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)

Availed of the following as private services

Speech Therapy 57 (22.4) 18 (28.1) 33 (23.1) 6 (12.8)


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.



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TABLE 4-16: Satisfaction Rating Percentages for Private Services

SATISFACTION RATING TOTAL %

CAREGIVERS OF PRESCHOOLERS (UP TO 5 YEARS) %

CAREGIVERS OF SCHOOL AGE CHILDREN (6-17 YEARS) %

CAREGIVERS OF ADULTS (18+ YEARS) %

Speech Therapy 83.9% 82.9% 87.2% 67.9%

OT 72.8% 73.1% 72.4% 75.0%

Physiotherapy 75.0% 66.7% 75.0% 80.0%

Psychology 68.1% 100.0% 66.7% 63.8%

Other 91.7% 100.0% 83.3% 93.8%

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.

TABLE 4-17: Caregiver Financial and Insurance Information by Region

AVALONN (%)

NORTH EAST AVALONN (%)

EASTERNN (%)

SOUTHCENTRALN (%)

WESTERNN (%)

LABRADORN (%)

Parent Employment Status

Fulltime 20 (48.8) 31 (54.4) 7 (29.2) 4 (26.7) 14 (50.0) 1 (33.3)

Part-time 5 (12.2) 11 (19.3) 6 (25.0) 1 (6.7) 2 (7.1) 1 (33.3)

Retired 1 (2.4) 7 (12.3) 0 (0.0) 0 (0.0) 2 (7.1) 1 (33.3)

Unemployed 15 (26.6) 8 (14.0) 11 (45.6) 9 (60.0) 10 (35.6) 0 (0.0)

Partner Employment Status

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

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)



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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

TOTALN (%)

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)


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

Each caregiver was asked to describe three improvements they would like to see. These key themes emerged from the transcripts:

• Professional Development and Training;

` Professional development for current educators in the system

` Professional development for new educators entering the system

` Training for student assistants

` 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;

• 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.

(f) Autism Society NL

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:

• Distance too far to travel to regional office;

• Unsure about how to become a member;

• 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%).



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TABLE 4-19: ASNL Membership and Service Use

ASNL MEMBERSHIP AND SERVICE USE

TOTAL N (%)

CAREGIVERS OF PRESCHOOLERS (UP TO 5 YEARS) N (%)

CAREGIVERS OF SCHOOL AGE CHILDREN (6-17 YEARS) N (%)

CAREGIVERS OF ADULTS (18+ YEAR) N (%)

ASNL Member

Yes 138 (64) 27 (49.1) 81 (65.3) 30 (83.3)

No 77 (36) 28 (50.9) 43 (34.7) 6 (16.7)

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)

If accessed, how often were ASNL services used

Weekly 41 (31.7) 2 (10.5) 27 (31.0) 12 (51.2)

Monthly 7 (5.4) 2 (10.5) 3 (3.4) 2 (8.7)

Occasionally 44 (34.1) 10 (52.6) 30 (34.5) 4 (17.4)

Not at all 37 (28.6) 5 (26.3) 27 (31.0) 5 (21.7)

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 school-aged 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.

However, South Central and Western regions do have a high number of respondents accessing their outreach services.

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 Library Resources (82.1%);

• Parent Support Groups (82.0%);

• 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

0

10

20

30

40

50

60

70

80

Other

Assisted Technology

Parent Support Groups

ASNL Library Resources

Family Consultation

TEACCH

LabradorWesternSouth Central EasternNorth East AvalonAvalon



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FIGURE 4-6: Caregivers Priority for the Role of ASNL

Professional Development and Training

Research

Programs

Family Support

Advocacy

7% 12%

21%

43%

17%

FIGURE 4-7: Priority of the Role of ASNL Broken Down by Age Group

Pre-Schoolers


Research

Programs

Family Support

Advocacy

6%18%

29%

18%

29%

Children (6-17 Years Old)


Research

Programs

Family Support

Advocacy

4% 11%

22%

7%56%

Adults (18 Years and Older)


Research

Programs

Family Support

Advocacy

0%0%

13%

13%

4%

70%

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).

FIGURE 4-8: Priority of Role of ASNL by Geographic Region

0

5

10

15

20

25

30

35

LabradorWesternSouthCentral

EasternNortheast Avalon

Avalon

Professional Developmentand Training

Research

Programs

Family Support

Advocacy

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.



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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

• 46.4% were dissatisfied with wait time for diagnosis

2) Training for Professionals

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

• 57.9% of educators not well trained in ASD

3) Mental Health Services

Mental health was often associated with ASD, particularly in the adult cohort. Better access to services and care for dealing with co-morbidities was discussed at length.

• only 4.3% of caregivers reported accessing mental health services

• 23.9% of caregivers reporting child having mental health issues

• 46.2% said mental health issues were observed in adults

4) Access to Services Caregivers listed barriers to services: lack of resources, trained professionals, and finances.

• 48% reported not enough resources

• 19% reported being too old for services

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

• qualitative commentary shows consistency among these assistants is an issue

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


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.”



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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.

FIGURE 4-9: Gender of Self-Advocates

Male

Female42%

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.

FIGURE 4-10: Education of Self-Advocates

No High School Diploma

Undergraduate Degree

College Diploma

High School Diploma42%

25%

25%

8%

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

Housed Through a Program

Live Independently

Live with Family

50%42%

8%

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

Other

Walk

Public Transportation

Drive myself

Others drive me

46%

9%

9%

18%

18%



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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

Full-Time Employment

Part-time Employment

Seasonal Employment

Unemployed

67%

17%

8%

8%

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 self-advocates (33%) indicated they were not employed, while our results showed that two in three (67%) were not employed.

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.

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 self-advocates.

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

Labrador

Western

South Central

Eastern

Avalon

Northeast Avalon

50%

34%

8%

8%

0%0%

0%



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iii. Analysis

(a) Referral and Diagnosis

The average age of diagnosis among self-advocates was 20 years old. Of self-advocates 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.

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.

FIGURE 4-15: Referral for Diagnosis Given by Health Professional

Other

Pediatrician

Family Doctor

Psychiatrist

Psychologist

56%

11%

11%

11%

11%

FIGURE 4-16: Diagnosis Given by Health Professional

Psychologist

Developmental Pediatrition

Psychiatrist

45%33%

22%

(b) Healthcare Services

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.

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.

Family support was recognized as the backbone of support for many self-advocates. Other support ranged from providing services to transportation to housing.

FIGURE 4-17: Reported Mental Health Co-Morbidities in Self-Advocates

0

1

2

3

4

5

6

7

8

OtherOCDPsychosis/Schizophrenia

DepressionAnxiety

Self-advocates availed of a wide range of services (Figure 4-18) including:

• Speech Therapy• Occupational Therapy• Physiotherapy• Family Doctor• Psychiatry

• ABA• Respite• Early IBI• Mental Health Treatment• Life Skills



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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.

FIGURE 4-18: Use of Services Reported by Self-Advocates

0

1

2

3

4

5

Life S

kills

Menta

l Hea

lth

Trea

tmen

t

Early IB

I

Respite

ABA

Psych

iatry

Fam

ily D

octor

Physioth

erapy

Occupatio

nal

Therapy

Speech

Therapy

FIGURE 4-19: Reported Barriers to Accessing Services

0

1

2

3

4

5

6

7

8

Other

Servic

es to

o far

Diagnosis d

oes n

ot

qualif

y for s

ervic

es

Too o

ld fo

r

serv

ices

Too yo

ung for

serv

ices

Lack

of t

rain

ed

pro

fess

ionals

Not enough

reso

urces

Can't a�ord

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

Lack of trained professionals Lack of trained professionals

Age prevented access to services (being too old to avail of services)

Age prevented access to services (being too old to avail of services)

Diagnosis did not qualify for services Negative experiences with professionals in the past

(c) Education Services and Training

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

Part-time

Full-time

90%

10%



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FIGURE 4-21: Services Accessed Through School

0

1

2

3

4

5

No Services

Behaviour Management

IRTSpeech Therapy

Fuctional Cirriculum

Student Assistant

AlternateCourses

ISSP

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.

Self-advocates were asked to provide an overall rating of their satisfaction with services they received throughout school.

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:

Troubles attributable to lacking social skills;

• Feeling different from peers;

• Challenges of coping with diagnosis;

• Feeling overwhelmed with sensory information in school environment;

• Prejudices against individuals with exceptionalities;

• Bullying from peers;

• Misunderstandings and misconceptions about ASD in the school system;

• Lack of service offerings in school; and

• 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;

• The IQ 70 barrier has been removed in other provinces;

• Missed opportunities for necessary services because IQ was over 70; and

• Feeling that quality of life has been impacted because of IQ 70



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FIGURE 4-22: Self-Advocates Awareness of IQ 70 Criterion

No

Yes

56%

44%

(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

0

1

2

3

4

5

6

A�ordable

Private Insurance

Significant expense

Paid out of Pocket for Services

NoYes

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

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.

FIGURE 4-24: Self-Advocates and ASNL Membership, Awareness of Services, and Access to Services

0

2

4

6

8

10

Accessed ASNL Programs

Aware of ASNL Programs

ASNL Member

NoYes

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.



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When asked to describe the reasons why individuals do not access ASNL services, primary reasons given included:

• Lack of awareness of ASNL;

• Concern whether programs would be appropriate for their diagnosis;

• Lack of services in smaller communities; and

• Transportation to and from ASNL.

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.

iv. Key Findings

Key Findings Description Key Statistics or Quotes

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.

• 75% of self-advocates reported expenses related to ASD to be a significant burden


Self-advocates described the need for supportive employment opportunities.

• 67% of self-advocates reported being unemployed


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:

• 67% anxiety• 58% depression • 33% OCD

5) Access to Services

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

• 33% cannot afford• 33% too old for

services• 33% lack of trained

professionals

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.

• 56% of self-advocates 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

• Those who did access programming only availed of Social Club and Social Therapy



5.1 Healthcare Sector

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.

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.

FIGURE 5-1: Type of Respondent

Other

Speech Therapist

Psychologist

Physician

Occupational Therapy

ABA

38%

4%

23%

1%2%

32%

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

18 years of age and older

6-17 Years of age

Up to 5 years of Age

43%

20%

37%

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.



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TABLE 5-1: Service Provider Demographic Information

DEMOGRAPHICSTOTALN (%)

PRESCHOOLERS (UP TO 5 YEARS) N (%)

SCHOOL AGE CHILDREN (6-17 YEARS) TOTAL N (%)

ADULTS (18+ YEARS) N (%)

Service Provider

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)

Region

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)

South Central Region 10 (6.8) 5 (7.9) 4 (7.3) 1 (3.3)

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)

Type of Care

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)

Sector of Work

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)

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)

DEMOGRAPHICSTOTALN (%)


SCHOOL AGE CHILDREN (6-17 YEARS) TOTAL N (%)


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;

• Nurses;

• Mental health specialists; and

• Speech therapists.

They provided both public and private care, including the following services:

• Referrals;

• Diagnoses; and

• Interventions/Treatment


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 99Page 98

FIGURE 5-3: Service Providers Broken Down by Region

Labrador Region

Western Region

South Central Region

Eastern Region

Avalon Region

57%

2%16%

7%

18%

TABLE 5-2: Health Service Providers by Age Region

REGIONTOTAL N (%)


SCHOOL AGE CHILDREN (6-17 YEARS) N (%)


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)

South Central Region 10 (6.8) 5 (7.9) 4 (7.3) 1 (3.3)

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)

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%).

TABLE 5-3: Course of Care as Reported by Service Providers

COURSE OF CARETOTALN (%)

PRESCHOOLERS (UP TO 5 YEARS)N (%)

SCHOOL AGE CHILDREN (6-17 YEARS)N (%)

ADULTS (18+ YEAR)N (%)

Where do referrals come from

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)

Wait Times for Diagnosis

Less than one month 13 (22.8) 4 (16.0) 6 (31.5) 3 (23.1)

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)

Between 6-7 months 11 (19.3) 6 (24.0) 4 (21.1) 1 (7.7)

Between 8-10 months 3 (5.3) 2 (8.0) 0 (0.0) 1 (7.7)

Between 11-12 months 1 (1.8) 1 (4.0) 0 (0.0) 0 (0.0)

Greater than 12 months 18 (31.6) 7 (28.0) 5 (26.3) 6 (46.2)

Wait Times for Treatment

Less than one month 27 (12.9) 3 (10.0) 18 (52.9) 6 (28.6)

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)

Aware of IQ 70 Rule

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)



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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

TOTALN (%)




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)

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)

Interventions Used

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)

ELEMENTS OF DIAGNOSTIC PROCESS

TOTALN (%)




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.



Page 103Page 102

TABLE 5-5: IQ 70 Criterion

IQ 70TOTALN (%)




Has the IQ 70 ever been a Barrier for you Providing Services?

Yes 32 (33.0) 13 (31.7) 12 (34.2) 8 (36.4)

No 65 (67.0) 28 (68.3) 23 (65.7) 14 (63.6)

Interventions Used?

Individual Therapy 103 (69.6) 44 (69.8) 37 (67.3) 22 (73.3)

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).

TABLE 5-6: Barriers to Services Identified by Service Providers in NL and CASDA

NL NEEDS ASSESSMENT CASADA

Lack of resources 97% Lack of resources 92%

Lack of trained professionals 73% Lack of trained professionals 56%

Services too distant 73% Services too distant 34%

Difficulty affording services 70% Difficulty affording services 81%

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%

(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%);

• Psychiatrist (13%);

• Physician (11%);

• Neurologist (4%); and

• Other (45%).

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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TABLE 5-7: Transitional Care Provided by Service Providers

TRANSITIONAL CARE

TOTALN (%)




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)

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)

Number of ASD patients transferred each year

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)

Break in provision of service for transitions

Yes 23 (29.5) 9 (28.1) 9 (32.1) 5 (27.8)

No 15 (19.2) 5 (15.6) 6 (21.4) 4 (22.2)

Not Sure 40 (51.3) 18 (56.3) 13 (46.4) 9 (50.0)

Transferred to

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)

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)

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

4 Transitional care means managing the client through changes in service providers, or programming.

Healthcare service providers were asked to describe the strengths of the current model of service delivery. The following strengths were reported:

• Strong multidisciplinary approach;

• Supports for home- based care;

• No waitlist for ABA services;

• Ease of cross-referrals;

• Family-centered care;

• Collaboration with professionals;

• Research-based practice;

• Team diagnosis;

• Client-focused care;

• Early intervention;

• Expert understanding and experience from providers;

• Support services provided in school;

• Individualized approach; and

• Equitable care for individuals with ASD.

Healthcare service providers were asked to describe the weaknesses of the current model of service delivery. The following weaknesses were reported:

• Limited number of service providers;

• Lack of social skills training;

• Limited training opportunities for staff in ASD field;

• Difficulties ‘navigating the system;’

• No access to Occupational Therapists in schools;

• Limited availability of alternative treatments for autism outside of ABA;

• 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.



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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

5%5%

0% 0%

67%

23%

18+ years old

15-17 years old

11-14 years old

7-10 years old

4-6 years old

1-3 years old

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.

FIGURE 5-5: Age Group With Most Challenges Accessing Services

18+ years old

15-17 years old

11-14 years old

7-10 years old

4-6 years old

1-3 years old

36%

15%

21%

15%8%

5%

Suggestions for Improvements

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.

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.

(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.

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.



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FIGURE 5-6: Training Opportunities for Service Providers

0

30

60

90

120

150Would Benefit From Additional Training

Continues to Participate in ASD Specific Training

Has Had ASD Specific Training

NoYes

TABLE 5-8: Training Opportunities for Service Providers

TRAININGTOTAL N (%)




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)

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.

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.

(e) ASNL

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.

TABLE 5-9: ASNL Membership and Access to Programs for Service Providers

ASNLTOTAL N (%)




ASNL Member

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)

Aware of the programs and services ASNL offers for service providers

Yes 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

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.



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iv. Key Findings



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:

• 18.2 % anxiety• 11.5% depression• 14.2% OCD


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,

• 36% of services providers reported adults over 18 years older with the most challenges 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

• 98% were interested in continuing professional development

6) ASNL 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

• 38.5% reported taking part in professional development workshops.

7) IQ 70 Criterion An alarming number of healthcare providers were not aware of the IQ rule.

• 40% were not aware of IQ 70


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.”

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 113Page 112

FIGURE 5-7: Role of Education Respondent in the School System

Other

Teacher

IRT

Guidance Counselor

Administration

39%

22%

5%

24%

10%


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).

FIGURE 5-8: Geographic Representation of Education Respondents

0

10

20

30

40

50

60

LabradorWestern SouthCentral

Eastern Avalon

47

54

37

59

32

Region

Num

ber

of R

espo

nden

ts

FIGURE 5-9: Breakdown of Education Respondents by Region

0

10

20

30

40

50

60

Other

Teacher

Administration

IRT

Guidance Counsellor

Labrador WesternSouth Central Eastern Avalon

Region

Num

ber

of R

espo

nden

ts

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.

iii. Analysis

(a) Services and Supports

Pathways for Students with ASD 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.



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TABLE 5-10: Full-Time Versus Part-Time Schooling for Students With ASD

PATHWAYAVALONN (%)

EASTERNN (%)

SOUTH CENTRALN (%)

WESTERNN (%)

LABRADORN (%)

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

Health 9 (75.0) 11 (100.0) 4 (57.1) 6 (85.7) 4 (36.4)

Safety 2 (16.7) 4 (36.4) 0 (0.0) 2 (28.6) 0 (0.0)

No Support 0 (0.0) 5 (45.5) 3 (42.9) 4 (57.1) 1 (50.0)

Other 3 (25.0) 9 (81.8) 1 (14.3) 1 (14.3) 1 (50.0)

Had to recommend not doing a full day of school?

Yes 6 (16.7) 3 (6.3) 1 (3.6) 1 (2.0) 2 (7.1)

No 29 (80.6) 43 (89.6) 25 (89.3) 47 (94.0) 26 (92.9)

Not sure 1 (2.8) 2 (4.2) 2 (7.1) 2 (4.0) 0 (0.0)

If yes, what was the specific reason

Safety 6 (100.0) 3 (100.0) 0 (0.0) 1 (100.0) 1 (50.0)

Health 3 (50.0) 2 (66.7) 1 (100.0) 0 (0.0) 0 (0.0)

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.

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.

(b) Transitions for Students

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

AVALONN (%)

EASTERNN (%)

SOUTH CENTRALN (%)

WESTERNN (%)

LABRADORN (%)

Plan for transition between grades

Yes 24 (64.9) 38 (79.2) 21 (75.0) 40 (78.4) 18 (66.7)

No 9 (24.3) 7 (14.6) 3 (10.7) 5 (9.8) 4 (14.8)

Not Sure 4 (10.8) 3 (6.3) 4 (14.3) 6 (11.8) 5 (18.5)

Plan for transition between schools

Yes 28 (77.8) 40 (83.3) 23 (85.2) 34 (66.7) 20 (74.1)

No 4 (11.1) 3 (6.3) 3 (11.1) 10 (19.6) 3 (11.1)

Not Sure 4 (11.1) 5 (10.4) 1 (3.7) 7 (13.7) 4 (14.8)

Plan for transition out of School

Yes 13 (36.1) 40 (83.3) 9 (32.1) 34 (66.7) 20 (74.1)

No 14 (38.9) 3 (6.3) 11 (39.3) 10 (19.6) 3 (11.1)

Not Sure 9 (11.1) 5 (10.4) 8 (28.6) 7 (13.7) 4 (14.8)

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.



Page 117Page 116

Figure 5-10: Transition Planning Between Grades, Schools and Into Adulthood

0

5

10

15

20

25

30Plan for transition out of School

Plan for transition between schools

Plan for transition between grades

Not SureNoYes

Response

Num

ber

of R

espo

nden

ts

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.

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.



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TABLE 5-12: Resources Available for Educators By Region

AvalonN (%)

South Central N (%)

EasternN (%)

LabradorN (%)

WesternN (%)

Teaching aids

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) 9 (15.3)

Copied Notes 31 (66.0) 24 (70.6) 41 (75.9) 26 (81.3) 40 (67.8)

Sensory Notes 10 (21.3) 4 (11.8) 12 (22.2) 5 (15.6) 6 (10.2)

Other 5 (10.6) 5 (14.7) 10 (18.5) 3 (9.4) 8 (13.6)

Classroom Support

Instructional Resource teacher 37 (78.7) 25 (73.5) 50 (92.6) 29 (90.6) 54 (91.5)

Student Assistant 38 (80.9) 27 (79.4) 50 (92.6) 26 (81.3) 51 (86.4)

Behavior Management Specialist

14 (29.8) 5 (14.7) 16 (29.6) 5 (15.6) 8 (13.6)

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)

AvalonN (%)

South Central N (%)

EasternN (%)

LabradorN (%)

WesternN (%)

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)

Other 28 (71.8) 24 (88.9) 39 (75.0) 16 (51.6) 40 (76.9)

Not Sure 2 (5.1) 2 (7.4) 1 (1.9) 3 (9.7) 3 (5.8)

How frequently does IEP get re-evaluated each year (%)

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)

Greater than 4 times 1 (2.7) 0 (0.0) 1 (2.0) 1 (3.8) 2 (3.8)

Never 2 (5.4) 0 (0.0) 0 (0.0) 0 (0.0) 1 (1.9)

Not sure 8 (21.6) 9 (32.1) 7 (14.3) 10 (38.5) 7 (13.5)

(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%).



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TABLE 5-13: Professional Development for Educators by Region

PROFESSIONAL DEVELOPMENT

TOTALN (%)

AVALONN (%)

EASTERNN (%)

SOUTH CENTRALN (%)

WESTERNN (%)

LABRADORN (%)

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)

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 high-ranking 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.

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.

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.



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iv. Key Findings



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

• 77.8% prepared for transitions between schools

• 36.1% prepared for transitions out of school

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.

“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.”

4) Resources available for educators

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.”

5) Continued Professional Development

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

• no mandatory professional development for educators

6) Inclusion in Schools

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.

5.3 Key Informants

i. Demographics

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 semi-structured; 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 workersChallenges 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.



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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 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.

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.

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;

• Increasing the number and hours of student assistants; and

• Offering a variety of supports/services for individuals with exceptionalities.



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(b) Professional Development and Training

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.

Navigating the System

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.

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.

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.

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;

• Provide programing;

• Fundraise;

• Provide support groups that can provide education to caregivers;

• Act as initial contact after diagnosis;

• Help transition students exiting the school system; and

• Develop community partners to help with supportive employment for adults with ASD.



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iv. Key Findings


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.”

3) Access to Services

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.”


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.”


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.”




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 Key informants felt the role of ASNL should be to lobby government to provide services and supports.

“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.”


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.

“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 semi-structured 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

6.0 Recommendations and Conclusions



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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

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.

Recommendations

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

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. 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.

Recommendations

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.

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.

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 high-functioning 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.



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TABLE 6-1: Recommendations by Priority, Target Age Group,and ASNL’s Role

RECOMMENDATIONS PRIORITYTARGET 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 socio-economic backgrounds

2 Life Span Advocacy

Outreach

4Assist newly diagnosed families and individuals with “Navigating the System” services

1 PreschoolSchool-Age Outreach

5 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 More programming is needed across the life span 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

11Better coordination of care and case management within and across jurisdictions


12Develop a list of services used by individuals with ASD and monitor/track wait times


13 Develop a comprehensive residential strategy for individuals with ASD 2 Adult Advocacy

RECOMMENDATIONS PRIORITYTARGET AGE GROUP

AUTISM SOCIETY ROLE

14 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

16Greater 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

18Implement more respite care and programs to get higher needs ASD adults into the community

3 Adult Advocacy


19Mandatory 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


21 Require that a proportion of school staff be trained in ASD to a higher level 2 School-Age Advocacy

22Develop 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

25Identify lower needs adults with ASD and work towards skill development and job coaching with the view to job placements

1 Adult Advocacy & Programming

Medical Registry

26A medical registry of ASD individuals should be established immediately for clinical and research purposes




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6.5 Advocacy Strategies for ASNL

A. Create a task list from the recommendations

• Task monitoring

• 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.

C. Campaign for policy change

• Using evidence-based research:

(i) Identify problems and policy issues;

(ii) Define goals;

(iii) Consult and build relationships; and

(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

• 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.

G. Media & Advocacy

• 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

• 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

Moving forward, Figure 6-1 demonstrates areas for future research.

FIGURE 6-1: Future Areas of Research

Evaluation of wait times for diagnosis and

services

Evaluate options for supportive

employment opportunites

Evaluation of mental health

services for youth and

adults

Residential options and

strategies for adults with

ASD

Prospective methods for counting and

tracking individuals with ASD

Feasibility of best practices and models

of care in NL



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 categories availed of an assortment of services. However, it was evident from the research 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 included limited availability of human and financial resources, and difficulty affording 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.

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ASNL Headquarters 70 Clinch Crescent P.O. Box 14078 St. John’s, NL A1B 4G8 T (709) 722-2803 F (709) 722-4926

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