Canadian youth and adults with Autism Spectrum Disorders: Towards an inclusive approach to service Kevin P. Stoddart, PhD Clinical Director The Redpath Centre for Social and Emotional Development Adjunct Assistant Professor Factor-Inwentash Faculty of Social Work, University of Toronto
Overview 1. The presentation of ASDs varies widely in youth and adults which makes it difficult to plan services and design policies. 2. Current ASD services in Canada are piecemeal and not inclusive of the wide range of needs of adults with ASDs. 3. Canada and its provinces are not prepared for the increasing prevalence of adults with ASDs; we are also in catch-up mode. 4. Although there has been improved recognition of the need in some provinces, this approach is not informed by Canadian epidemiological or needs assessment research. 5. Federal and provincial inter-ministerial cooperation and coordination are essential in meeting the needs of this group.
The Pervasive Developmental Disorders
Who are Adults with ASDs? Based on the experience in Canada there are probably five groups of adults with ASDs: 1.Those diagnosed with ASDs as children or teens and who have reached adulthood; 2.Those diagnosed as adults at various life stages due to a crisis, psycho-social problems, recognition by self, friends, or family 3.Parents/extended family members of children and youth with Asperger s or ASDs who recognize symptoms in themselves 4.Adults in the developmental disabilities system or mental health system who have been undiagnosed or previously diagnosed with autistic features in childhood 5.Those yet undiagnosed
Asperger Syndrome Social/Communication Traits Despite desire for friends, difficulty initiating or maintaining Problems reading non-verbal/social cues or understanding social rules Socially naïve and as a result are often taken advantage of or bullied Poor eye contact, atypical use of gestures & facial expressions One-sided conversations, and little ability for small talk May appear overly shy or overly extroverted, but inappropriately so Unaware of others thoughts, feelings or perceptions Literal interpretation of communication from others Avoidant of social contact and may experience heightened anxiety Communication is used for delivering information or requesting
Asperger Syndrome Behavioural Traits May respond poorly to changes, sensory stimuli, transitions, lack of structure, and restrictions Repetitive movements (e.g., jumping, rocking, pacing) and speech (i.e., talking about favourite topics, interests) Rigid, inflexible and rule-bound behaviour Inappropriate behaviour given the social situation (e.g., speaking too loud in place of worship) Exaggerated emotional response to situations (e.g., tantrums when asked to something that they don t want to do) Superior ability to focus on favourite activity or area of interest (e.g., spends hours mastering video game to the exclusion of other pastimes)
Asperger Syndrome Cognitive Traits Average to superior intelligence Detail oriented approach to tasks May have associated learning disabilities (e.g., NVLD) Often have high verbal scores and low performance scores Difficulty seeing parts-to-whole and whole-to-parts relationships Prefer technical/factual information over abstract /emotional Associated Challenges Anxiety and depression Attentional difficulties (e.g., shifting attention) Tics or Tourette's Syndrome Gross and fine motor deficits Poor organizational skills (e.g., time management, planning, partializing)
Co-morbidity and Asperger Syndrome
Epidemiology Is the prevalence of ASDs actually increasing or are we better at recognition and recognizing a wider range of functioning? There is no scientific evidence for the MMR Vaccine theory, although parents report compelling developmental histories to the contrary Are there other environmental issues that need to be explored? In February 2007, the CDC (US) revised the prevalence rate of ASDs to 1 in 150 (the previous rate was 1 in 167) Down syndrome occurs in 1/800; Juvenile diabetes in 1/400-500 There are NO ADULT epidemiological studies occurring in Canada The prevalence of Asperger Syndrome is hard to ascertain because of: Differing definitions Different screening tools Differing methodologies Different time periods
Prevalence Rates of ASDs (Tidmarsh and Volkmar, 2003) Specific Diagnosis Rate/10,000 Studies Since 1987 Autistic Disorder 10.0 PDD (NOS) 15.0 Asperger Syndrome 2.5 TOTAL 27.5 Studies Since 2000 ALL Autism Spectrum Disorders 60
ASDs in Canada: Recent Findings Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations (Fombonne et al., 2007) We found 180 children (82.8% males) with a pervasive developmental disorder diagnosis.yielding a prevalence for pervasive developmental disorder of 64.9 per 10,000 (1 in 153). The prevalence for specific pervasive developmental disorder subtypes were, for autistic disorder: 21.6 of 10,000; for pervasive developmental disorder not otherwise specified: 32.8 of 10,000; and for Asperger syndrome: 10.1 of 10,000.
ASDs in Canada: Recent Findings Prevalence of Pervasive Developmental Disorders in Two Canadian Provinces (Coo et al.): The ASD-CARC Epidemiology Project Team Manitoba Prevalence per 10,000 2-4 years 26.9 19.7 5-9 years 37.7 41.0 10-14 years 23.6 42.1 Overall 29.7 1 in 340 PEI Prevalence per 10,000 37.3 1 in 270
Canadians 15+ with an ASD (on basis of 1/167 rate) The total number of Canadians with ASD 15 and over is 153,529
ASD Diagnoses of the Subjects (N=100) Stoddart, Burke et. al, 2003
Expressive Communication Skills
Presenting Problem by Functioning Level
Housing for the Subjects
Income Source for the Subjects
Psychiatric Diagnoses of the Subjects (N=13)* * 13 Subjects had 1 diagnosis, 3 subjects had 2 diagnoses, and 1 subject had three diagnoses
Service Type Required for each ASD Group
Age of ASD Group vs. DD Group Percentage of Subjects
IQs of ASD Group & DD Group Percentage of Subjects
The Cost of Delayed Intervention Patches of programs and services for adults exist but they need to be: greatly enhanced better funded better coordinated and connected more specialized to individuals with ASDs more individualized based on functional needs, not IQ Untreated children and youth with ASDs are at risk of school dropout, depression, anxiety, and long-term psychosocial problems Untreated adults with ASDs experience serious mental health problems (suicide), isolation, addictions, unemployment, and ongoing dependence on aging families, social service, income support and (mental) health programs
Adults with ASDs Speak (Autism Society Canada, 2006) Adult Canadians with ASDs must have greater access to: Psychological services: diagnosis and assessment services Counselling: individual, couple and family counselling Educational and support groups and workshops (e.g., ASDs, selfcare, social skills, mental health, sexuality, and sensory issues) Appropriate and safe housing: group homes and supported housing Life skills training: budgeting, organizational skills, work skills Social and recreational opportunities Legal aid and other legal resources Mental health resources: counselling, medication, and advocacy Post-secondary education and supports Employment opportunities: assessment and training
The Standing Senate Committee on Social Affairs, Science and Technology Knowledge Exchange Centre The federal government provide funding for the creation of an Autism Knowledge Exchange Centre; The Centre include an Internet-based web portal for access to reliable data and credible links for those seeking autism information; The Centre be at arm s length to government; and, The Centre be mandated with the dissemination of best practices based on authoritative research and scientific consensus.
The Standing Senate Committee on Social Affairs, Science and Technology Public Awareness Campaign Health Canada, in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign to enhance knowledge and understanding about ASD; and Health Canada use its dedicated webpage as one component of a public awareness campaign. Research The federal government create an Autism Research Network and provide substantial new funding for this through CIHR; and, The Autism Research Network work collaboratively with all stakeholders, including individuals with ASD, to develop a research agenda.
The Standing Senate Committee on Social Affairs, Science and Technology Need for a National Autism Strategy The federal government, in collaboration with the provinces and territories, establish a comprehensive National ASD Strategy; All stakeholders, including individuals with autism, be consulted on the components that should be part of the Strategy, such as treatment, research, surveillance, awareness campaigns, community initiatives, education, respite care for families, etc.; and, The Strategy will include child, adolescent and adult treatments and supports.
Report on the National Autism Research Symposium (CIHR; November 2007) Discussion Highlights: Lifespan Issues Group There is currently a lack of research on adults and lifespan issues. We need a better understanding of what societal supports, supports for parents, and educational approaches lead to successful outcomes for adults We need for school staff to have more training and information to support children so that youth with ASD are understood, supported, and included in the educational and social experience of school. It is important to teach life skills, and evaluate for individuals of all levels of ability across the spectrum. There is a need to approach ASD research from the perspective of the individual with ASD. The need for research in the following three key areas was identified: Training and awareness models across the lifespan for professionals, educators, service providers, community/recreation providers and employers; What families say they need, what the system provides, and the barriers and facilitators for what families receive; Life, communication, social, and emotional skills needed across the lifespan for success.
A Path to Better Services
Concluding Remarks In order to ensure more comprehensive services for all Canadians with ASDs, we will need to: 1. Coordinate Canadian research, policy and service efforts; 2. Develop closer partnerships with national and provincial advocacy groups; 3. Realize need for services across the spectrum and across the lifespan 4. Foster Canadian life-span research across a range of areas 5. Ensure good knowledge exchange of best practices