What is Autism?
The clinical model defines autism, or Autism Spectrum Disorder as a lifelong neurodevelopmental disorder that affects the way a person communicates and relates to people and the world around them. It can affect body language and posture, social interactions and relationships, how you engage with your interests, and sensory processing capacities. Autism exists in all cultures, ethnicities, races, and gender identities.
While the Public Health Agency of Canada references the Diagnostic and Statistical Manual of Mental Disorders (DSM5) in classifying autism as a disorder, many autistic people prefer the terms, neurological “difference” or “condition,” which remove the negative associations with the word, “disorder.” Being autistic means that your brain may process information differently than non-autistic, or neurotypical, people.
Autism exists on a spectrum, which means that while all people on the spectrum will experience some of the differences mentioned above, the degree to which each autistic person experiences them and the amount of support they need, will vary. This is sometimes influenced by whether the person on the autism spectrum has any co-occurring health conditions. It is also influenced by the accessibility and relative safety of the environment and society autistic people inhabit; a society that we all contribute to and live in.
For more information about autism, check out the Autism Self Advocacy Network’s (ASAN) online book, Welcome to the Autistic Community.
What Autism Isn't
Autism is not an illness or a disease.
Autism is not temporary.
Autism is not contagious.
Autism is not caused by vaccinations.
Autism is not caused by parenting styles.
Autism does not go away in adulthood.
How Many People in Canada are on the Autism Spectrum?
In March 2018, the National Autism Spectrum Disorder Surveillance System (NASS) released the most up-to-date Canadian prevalence rate: 1 in 66 Canadian children and youth (ages 5-17) are diagnosed with Autism Spectrum Disorder (ASD). According to the Canadian Medical Association Journal, approximately 1 - 2% of the Canadian population is on the autism spectrum which means there are approximately 135,000 autistic people in Ontario.
As more research is being done on the intersections of autism and race, gender, sexuality and social locations, more information is being made available online which is increasing the rates of autism diagnosis in children and adults. This in turn is placing a larger demand on education, healthcare, and social service systems, highlighting glaring gaps in the supports available especially for autistic adults, people with lower incomes, people in rural areas, and Black, Indigenous and people of colour.
Having these numbers helps us advocate to the appropriate government ministries for the individual needs of all people on the autism spectrum and their families throughout the life course.
How to Talk about Autism
Autism means something different to everyone. Medical professionals and researchers may talk about it one way, an autistic person’s family will talk about it another way, while a person on the spectrum might talk about it still another way.
One of the main differences you’ll see in the way people talk about autism is whether they use person-first language (person with autism) or identity-first language (autistic person). Person-first language reflects the idea that autism can be separated from a person, similar to phrases such as “living with autism,” while identity-first language reflects the belief that being autistic is an important part of a person’s identity. The autistic community at large most often uses identify-first language, but there are those that prefer person-first language. When in doubt, just ask. The phrase, “on the autism spectrum” is usually a safe bet.
The most important thing to remember is that when you’re talking about autism, you’re talking about a person. The research we do and the supports we provide to autistic people and families is inextricably connected to how we can best support people on their own terms.
Since autism is a spectrum, there was a tendency in the past to use functioning labels such as “low-functioning” and “high-functioning” to further categorize autistic people. Functioning labels define categories of support needs based on a neurotypical, or non-autistic experience of support that often involves a medical-model based intervention without an accompanying social/societal intervention. This does not adequately define how existing in inaccessible, overwhelming, and unaccommodating environments may contribute to disabling experiences and observations of “lower function”. This also does not address the work that neurodivergent and autistic people may do to mask their disability and appear neurotypical, which may lead to distress and burnout, behaviour that may in turn be observed as “lower functioning”. We no longer use such language because it does not fully represent the rich diversity of experiences, abilities and challenges lived by autistic people, and many autistic people find it offensive. An alternative to using these labels is being more specific when describing a person’s accommodation needs (e.g. “Alex often needs assistance with their fine-motor tasks”).
For more information on talking about autism, check out The Canadian Autism Spectrum Disorder Alliance’s (CASDA) Language Guide.
References and Resources
Canada, Public Health Agency of. “Autism Spectrum Disorder among Children and Youth in Canada 2018.” Canada.ca, 19 Apr. 2018, www.canada.ca/en/public-health/services/publications/diseases-conditions/autism-spectrum-disorder-children-youth-canada-2018.html.
Furfaro, Hannah. “Conditions That Accompany Autism, Explained.” Spectrum, 7 May 2020, www.spectrumnews.org/news/conditions-accompany-autism-explained/.
Holmans, Christa. “What IS Autism? – The Whole Person Model or the Differences Model (Book Preview).” Neurodivergent Rebel, 28 Feb. 2020, neurodivergentrebel.com/2020/02/25/what-is-autism-the-whole-person-model-or-the-differences-model-book-preview/.
“Language Guide.” CASDA, 11 July 2020, www.casda.ca/language-guide-2/.
“Welcome to the Autistic Community.” Welcome to the Autistic Community!, autismacceptance.com/read-the-book/.
Four Directions Autism (a parent-to-parent support group for First Nations, Inuit, and Metis parents who have children with autism): http://fourdirectionsautism.ca/index.html