By Sea Change’s resident communication maven, Erin Casey.
April is Autism Acceptance Month. It used to be Autism Awareness Month, and I’ve even seen Autism Science Month. But I’m kind of new to the autism party (Yes, there is one! It’s kind of like the gay agenda, only autistic), so I’m not sure what all these shifts are about. In any case, I feel like the bar is on the floor here.
Full disclosure: I’m not an expert. I’m not a health professional. I’m not a psychologist. I’m not autistic. But my daughter is, which makes me an advocate and a voracious learner about autism and neurodiversity.
When she was diagnosed two years ago, at 16, it wasn’t a huge surprise. But it was the start of a perilous, frustrating, energy-sucking, and frankly harmful journey through the public education system — one that is, mercifully, almost over. Leaving us to consider what exactly life and work will look like for her as an adult.
Are you part of an organization that employs and serves humans? Yes? Then here’s what I think you need to do right now.
Ask.
What IS autism, anyway? Autistic people’s brains process information differently. Autism is a form of neurodivergence, meaning an autistic brain is physically different from a neurotypical brain. Autism is not a mental health condition; it’s a neurological condition.
Autistic folks process sensory information differently, have atypical social communication and interaction styles, and often have special interests and areas of expertise. Autism is vastly diverse. As the saying goes, once you’ve met one autistic person, you’ve met ONE autistic person! And if you want to understand more, ask #actuallyautistic people, follow them on social media, and LISTEN.
(Fun fact: Many autistic people prefer identity-first language. So even though you might be used to using person-first language, like “persons with disabilities”, for example, autistics often prefer “autistic person” — not “person with autism”. This blog post explores various perspectives.)
Accept.
Autism is common. About one in 66 children and youth is diagnosed with autism in Canada. And that’s just kids who are actually diagnosed. LOTS of families don’t have access to formal diagnosis. It costs thousands of dollars and you could wait years for a diagnosis through the public health or school systems. The Canadian Medical Association Journal tells us 1 to 2% of the Canadian population is on the autism spectrum. That’s between 390,000 and 780,000 Canadians. Think you don’t know or work with someone who’s autistic? Think again.
Acknowledge.
Autism is a normal variation in how human brains develop. It can’t be fixed, changed, or cured — but it can be accommodated and celebrated. An autistic person will always be autistic. It’s as much a part of who someone is as having brown hair, being gay, or hating cilantro. Autistic people have “a unique ability to think outside the box, shake shit up, and defy meaningless social norms.” (Source: My kid.)
Autism is a spectrum, and that doesn’t mean a straight line from “not autistic at all” to “super-duper autistic”. And no, we’re not all “a little bit autistic”. The spectrum is complex and multi-dimensional: Autistic folks have gifts, talents, and abilities, as well as things they struggle with, just like anyone else. These abilities and impairments interact in different ways for different people, and can change from hour to hour, day to day, and throughout life — depending on the environment, support, and appreciation a person gets. This blog post illustrates it pretty well.
Axe the “functioning labels”.
Most autistic people I know (and most people with disabilities, for that matter) think “functioning labels”, like “high functioning” and “low functioning” are inaccurate, ableist, and harmful. They basically measure a human being’s value against their economic worth to society. I know, I know… how else do I describe it? Talking about support needs is one way: My daughter, most of the time, has low support needs. But at some times and in some situations, she has high support needs. And guess what? The more autism-friendly an environment is, the lower her support needs are!
Remember that autism can be an invisible disability. YOU CAN’T TELL SOMEONE IS AUTISTIC BY LOOKING AT THEM. And girls and women are seriously underdiagnosed for social and historical reasons, meaning they get even less of what they need to live their best lives. As my daughter says, “Mom, I’m not disabled enough to get help at school, but I’m too disabled to thrive.”
Adjust your attitude.
Make space for and celebrate different brains. In addition to having control over the sensory inputs and pace of their environment, autistic people may appreciate you holding space for them to participate in conversations and join in with a group in ways that feel good for them. This includes autistic folks who communicate with assistive technology or in writing, too, BTW! Try meeting and gathering approaches that explicitly give each person a chance to be heard, like talking/sharing circles. And don’t be afraid of pauses in conversation. Lots of us could use a little extra time to process and chime in.
Allow for access.
Surprise! Autistic folks want pretty much the same things anyone does: Love, belonging, fun, gossip, education, work, money, sex, junk food, and someone to go to IKEA with. When you allow for different kinds of brains to belong and take part, you open up all kinds of possibilities: to solve problems, make art, shape systems, and build relationships.
Awareness, acceptance, science, blah blah blah.
Awareness is the BARE minimum, people. Acceptance? Why, thank you so much. I didn’t realize autistics were unacceptable. Science? Okay, but there’s as much art as there is science to this whole thing.
How about Autism Month? That’s my daughter’s suggestion: Smart, concise, creative, and accurate, just like her.