“Autism” is a word that everyone has heard, but how many people understand what it means? Because it isn’t just one thing, and it looks different from one person to the next, many people find it difficult to describe.
In the past, April has been celebrated as Autism Awareness Month. However, there is a movement building to replace “awareness” with “acceptance”. This is because the term “awareness” carries an implication that there is something that needs to be fixed. “Acceptance” instead encourages normalization of autism in society: supports are only provided where the individual needs it, education on autism is more widely available, and barriers are removed from day-to-day life to promote inclusion.
So, what is autism? Why are the treatments for it so hotly debated? And most importantly, how do we move beyond autism awareness to autism acceptance?
Autism Is Multifaceted, and Each Person with Autism Is Unique
Let’s start with answering the question “what is autism?” Autism Ontario provides a helpful definition on their website:
“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 (DSM-5) 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.”
When I hear people discussing autism, words like severe, moderate, and mild are usually present. The idea that autism exists on a linear spectrum from least to most severe, just isn’t accurate! Just like a colour wheel has many shades in each colour, there are many aspects of a person that may or may not be affected by autism.
For example, a person with autism may be amazing at sports, but be non-vocal (i.e., does not talk), and need assistance with self care. Another person could be a phenomenal conversationalist about a limited number of topics, yet still require some help planning their day, and need visual reminders on how to make their lunch. The point is that not everyone whose autism is classified as “severe” is completely dependent on someone else. And not everyone whose autism is classified as “mild” is totally independent. Just like neurotypical individuals, each autistic person is unique!
The Language We Use Should Reflect the Person We’re Talking To
My Applied Disabilities Studies professor posed a question very early on in the class: Should we say “person with autism” or “autistic person”?
Our class debated. Some argued that person-first language (“person with…”) was more humanizing. Others argued that identity-first language (“…person”) was more normalizing for the specific disability. The professor stopped us mid-debate and posed a second question: “Have any of you actually asked someone with that specific disability what they’d like to be called?”
It was incredibly eye-opening. Far too often the individual who requires care, therapy or assistance is excluded from conversations about them. Their desires, wants, and needs are often decided for them. The bottom line is: some people with autism spectrum disorder want to be referred to as a “person with autism”, and some want to be referred to as an “autistic person”. The important thing is to use language that respects the identity and preferences of that person.
If Our Goal Is ‘Inclusion’, Why Intervene?
This focus on the identity and preferences of the individual raises an important question. If the goal is “inclusion” of people with autism, what are the role of interventions? Can they honour someone’s autonomy and individuality?
It’s important to keep in mind that not all autisic individuals need or even want interventions. However, many do benefit from therapies that help them learn skills to access their wants, needs, and desires through improved communication, emotional regulation, and overall independence. This is why a compassionate approach is necessary. Practitioners need to approach interventions with consent and assent in mind. We need to show that we will not force anyone to do anything that they do not want to do. They are in control. If a client decides that they want to withdraw their consent or assent, we will respect it.
Taking Steps toward Autism Acceptance
There are some simple things that we can do to support autism acceptance and greater inclusion of people with autism.
First, if someone lets you know that they have autism, pay attention to how they say it. How do they identify themselves to you? If they say “I have autism” rather than “I’m autistic”, this signals how you can refer to them as well. If you still don’t know what language to use and it is essential for you to know (sometimes, it isn’t), ask. Normalizing these conversations not only makes them less taboo, it also brings that person’s preferences to the forefront. This gives them more autonomy than making assumptions.
Second, be aware of environmental factors that may be overstimulating, especially if you are with someone with autism. These variables may have a direct effect on their ability to focus, or even self-regulate. Factors can include lights, sounds, how many people are around. If you are in tune with the environment, you’ll be better prepared to help mitigate challenging situations, and be sensitive to regulation or focus issues someone with autism may be experiencing.
Finally, if autism comes up in conversation, be an advocate! Many people don’t understand autism, and that each autistic individual is unique. Challenge concepts like “they don’t look autistic” in a way that is constructive, and thought-provoking. Share what you know and be open to learning more.
Autism Services in Ontario
For people with autism who do need and want interventions, what is available? In Ontario, the Ontario Autism Program (OAP) is a government-funding program that provides funds to children with autism to get the interventions they need to improve their development outcomes. There are several different evidence-based interventions that are on the eligibility list in the Ontario Autism Program, which, when used individually or together, target specific goals and achieve goals that a child or youth may have.
The four core services that can be purchased with OAP funding are:
- Applied Behaviour Analysis (ABA) Therapy
- Speech and Language Pathology (Speech Therapy)
- Occupational Therapy; and
- Mental Health Services
Each intervention targets specific challenges children and youth with autism may face: ABA focuses on skill acquisition and behaviour reduction (usually through teaching appropriate alternative skills). Speech Therapy focuses on communication skills. Occupational Therapy works with sensory needs and motor functioning. And mental health services help with goals related to an individual’s psychological well being. These interventions work in concert to meet the challenge and support the goals that a child may have in relation to their developmental well-being.