ASD is a life-long neurological disorder that affects the way a person communicates and relates to the people and world around them. ASD can affect behaviour, social interactions, and one’s ability to communicate verbally. ASD is a spectrum disorder, which means that while all people with ASD will experience certain difficulties, the degree to which each person on the spectrum experiences these challenges will be different.
For a simple, clinical definition of ASD, please visit the POND Network, the Province of Ontario Neurodevelopmental Disorder Network. Autism Ontario is a proud partner of their Parent Advisory Committee.
According to the National Epidemiological Database for the Study of Autism in Canada (NEDSAC), ASD is one of the most common developmental disabilities, in Canada, 1 in 94 children is diagnosed with ASD. Autism Ontario speaks to this number because it reflects the work and research being done about ASD in Canada. According to the Canadian Medical Association Journal, approximately 1% of the Canadian population is affected by ASD, which means there are approximately 100,000 Ontarians on the autism spectrum.
ASD crosses all cultural, ethnic, geographic and socioeconomic boundaries.
The terminology, the words or terms we use to diagnose ASD are constantly changing. As assessment tools are developed, the set of described behaviours are defined in new ways. There have been many changes made to the diagnostic terminology over time, and while it is important to know the history, what is most important, is meeting the needs of people on the spectrum, and their families.
+ severity ratings based on level of support required
There are lots of different ways to talk about Autism Spectrum Disorder (ASD). We can talk about ASD medically, we can describe it through behaviour, we can talk about prevalence rates, we can talk about early detection and the importance of early evidence-based intervention, we can talk about the need for support for people with ASD across a lifespan, or we can talk about why advocacy is vital for building communities equipped to meet and support the changing needs of people on the spectrum.
It’s easy to think about ASD as a diagnosis, however, we are not talking about a diagnosis. We are talking about a person with ASD. We are talking about a person with individual needs. We are talking about a person with loving family members. We are talking about a person who needs to be accepted and included in her or his community, we are talking about a person who is granted equal opportunity preparing for and succeeding in adulthood.
Ontario must support the individual needs of a person with ASD throughout their lifespan using evidence-based treatment and intervention, while remembering that developmental trajectories are constantly changing.
Whether someone with ASD is affected mildly, severely, or somewhere in between, they might have difficulty verbalizing their thoughts, managing their anxiety, dealing with change, or participating in group activities. This can sometimes result in unintended conflicts with community at large; it can lead to engagement with mental health sector, as well as criminal and family justice systems. Without the proper support, a person with ASD can experience joblessness, homelessness, strain and stress. This can have a major impact on their quality of life.
Early intervention is critical to the development of all children on the autism spectrum. Waiting lists for evidence-based services are unacceptable. In some places in Ontario it can take up to four years to receive a diagnosis of ASD.
ASD doesn’t go away in adulthood; the system in Ontario must be responsive to the needs of children transitioning into adulthood. After high school, there is little support for youth looking to access post-secondary education or employment opportunities. While early intervention and services for children are critical, attention must also be given to the wide-ranging and overlooked needs of older youth and adults with ASD.
Unfortunately, the supports and services for adults on the spectrum are inadequate and fragmented, and fail to address needs across the entire lifespan. There is a societal cost to families withdrawing from workplace to act as caregivers, increasing responsibility as parents age and resources diminish. Housing for people with ASD continues to be segregated and expensive. People with ASD require affordable, safe, supported residences, where they are a meaningful part of their communities.
Because ASD changes over time – in its expression, challenges and delights; Ontario must be prepared to support children, youth and adults within the context of development, learning, family and community. Supportive, understanding and inclusive communities ensure that each person with ASD is provided the means to achieve quality of life as a respected member of society.