(See the bottom for content warnings)
This isn’t a story about my child on the autism spectrum, this is a story about me: an autistic person.
I cannot manage my own finances. I currently have $2.98 in my bank account and $5,597.46 in credit card debt (my credit limit is $5.5k). I spend what little money I have left over after rent and utilities on fast food and games on my phone.
I am living in poverty. I am on Ontario Works while I wait for my ODSP application to be processed. This means that I receive about $5 less than the cost of my rent every month. That negative $5 left over is meant to cover the cost of my food, hydro, internet, laundry, and transportation needs for the month. If my mother didn’t send me $200 every month, I would likely be homeless.
I cannot work. Tasks that require executive functions (planning, organizing, memory, prioritizing, etc) exhaust me very quickly because of the way my brain works. If I were to work it would have to be part-time, but it would feel like full-time with overtime to me. But I cannot find work even when I try, because I can’t get past the job interview. If I disclose my autism, that brings all the stigma to the hiring manager’s mind. If I don’t, my literal way of thinking makes the interview process go poorly and the hiring manager is left with an impression of me along the lines of strange, blunt (or even rude), and hard to read.
When I get disoriented from being forced to abruptly switch tasks, I injure myself. I also injure myself when I get angry.
When there is something blocking a place I need to get to, like a coat on my chair or a bag of groceries on the floor in front of the fridge, I freeze up. If I try to move the thing out of the way, it causes me great distress and it’s very likely that I will burst into tears and need to take 30-60 minutes to recover.
I cannot keep a clean home. My home is littered with garbage and dirty dishes. In the past year, I’ve lived through both bed bug and cockroach infestations. I’ve gotten in trouble with my building for being a fire hazard.
Phone calls give me anxiety attacks.
I cannot always speak with my mouth. During those times when I’m nonverbal, I can’t always type or write what I want to communicate either.
Perfumes, cigarette smoke, and other strong smells make me dizzy and overwhelmed. So does noise from crowded areas, traffic, and construction. If I cannot leave those situations, I will either break down crying or have a shutdown (internal version of a meltdown).
I am not saying all this because I want your pity. I’m certainly not saying this because I want “treatment” for my autism. I’m saying it because the non-autistic autism community has created an environment where every autistic person who disagrees with them is labelled “high functioning” and therefore unable to speak from the experience of a “low functioning” autistic person. So, here are many of my autism-related challenges. If you still don’t think I qualify as “severe enough” to have an opinion, I don’t know what to say to you.
My story is not one of an autistic person who tragically did not receive ABA. It is one of an autistic person who has been left to fend for herself in a province that only cares about funding “treatment” and not support. I am not going to make a case against ABA here, that has already been done by many, many autistic self-advocacy groups like ASAN in the United States and A4A Ontario here at home.
What I am going to say is that there should at least be more options available to help autistic people than just therapy with the goal of making us “indistinguishable from our peers.” Because if that isn’t a good fit for us, what is left? What happens to those of us like me, who can’t live with their parents? Read through my challenges again and you’ll get an idea.
Then what would help me, if not ABA? AAC (Alternative and Augmentative Communication) would be incredibly helpful, so I could communicate when my mind can’t form words. Welfare and disability payments that are above the poverty line would be game-changing as well. In-house disability support services like a house cleaner would greatly improve my quality of life, while maintaining my freedom to live in my own home. Access to quiet, fragrance-free rooms in public places would help me be safer when I go to school or doctor’s appointments.
Why do I not want to “overcome” my autism? It’s because despite the disadvantages and stigma it comes with, I love being autistic.
I love being part of the vibrant, diverse autistic community. People of all races, genders, sizes, and personalities can be autistic. We have created spaces online where we understand each others’ ways of communicating and where we can feel accepted for who we are.
I love stimming.
I love my sensory stick, a rubber stick with somewhat firm spikes that provides me with a safe alternative to self-injuring when I’m anxious or upset. I love squeezing it in my hands and I love brushing my arms and legs with it.
I love when I get excited about something and I flap my hands. It’s such a wonderful way to let joy flow through you!
I love chewing on my chewable jewelry when I’m focusing on something, like a video game or a math problem.
I also love watching videos online of people playing with kinetic sand, just for fun!
I love repeating words and sounds over and over again. Sometimes it calms me, sometimes it motivates me, sometimes it’s just because it feels nice.
I love my special interest; physics. I love learning about exotic forms of matter that exist only in the most extreme environments like neutron stars. I love learning about magnetic fields, they’re like real life magic to me! I love the beautiful predictability that can arise in simple kinematics. I love applying newly learnt mathematical concepts to physics problems.
That is what I mean when I say this: I love being autistic. I do not want to be neurotypical. I want to have the freedom to be me, even if that means I need support in areas that neurotypical people do not.
The end of the OAP to me represents hope. Hope that autistic adults can be included in creating the next autism-related plan in this province. Hope that families will not have only one option for their autistic children, an option that is expensive, doesn’t work for every child, does nothing to help autistic people once we grow up, and is not even wanted by many autistic people at all. Hope that we can finally start to shift the focus away from “early intervention” and towards lifelong support and acceptance.
Parents of autistic children: if you want to hear what it was like for people who have lived the experience of being an autistic child, seek out #ActuallyAutistic voices. We usually can’t access places like town hall meetings or protests, but we have been putting our perspectives out there on the Internet. Take a look at the resources at A4A Ontario, an autistic-run self-advocacy group. Listen to our stories and our perspectives. If there’s something your child does that you just don’t understand or know how to respond to, try #AskingAutistics to see if we can offer some insight that non-autistic professionals may not realize.
If you’ve read this far, I just want to say thanks for considering my perspective, and that I wish you all the best at this time of transition in our province.
Content warnings: insects, self harm, ABA, functioning labels