Not An #AutismMom

My three year old son is autistic.

He was diagnosed in March at a private clinic. A doctor and a team member sat with him for a couple of hours and, using a play-based model they assessed him by looking at three specific things. They looked at his speech, or rather lack of speech as well as his social responses and his motor skills. These factors are considered alongside his behaviour during the appointment and neatly compiled into a report that will follow him throughout his life, even into elementary school. This report classifies him as autistic with a global delay. Spencer is, according to the documentation, behind where a child his age “should” be.

The official diagnosis was the final step in a long journey that started before he was even six months old. The diagnosis was not a surprise and it hasn’t changed the way I’m navigating this by a whole lot. It’s not something that I put too much thought into, and the report didn’t tell me much that I didn’t already know, but it serves as a tool for me to be able to access resources and therapies that he needs.

My focus is on my son. I made certain that I knew what the assessment process looked like so that I was sure it wasn’t going to cause him stress. I researched and interviewed potential therapists to get an idea if their goals were aligned with my own. I researched the things that were suggested to me and I signed up for help wherever I could. We joined the Canucks Autism Network. We hired an Occupational Therapist and a Speech Pathologist. Spencer got on a list to have a one on one aid and I secured him a spot in a preschool for September.

All of these things were important, and I did them with Spencer’s best interest in mind. One of the most beneficial things that I’ve dedicated my time to, though, is in keeping space for autistic voices in my decisions around Spencer’s future.
I had never really given it much thought but once I started looking I found this amazing network of Autistics who are openly sharing their experiences online. I can’t express how incredibly helpful it is to read about therapies and perceptions straight from the heart of someone who has been living through it.

In the main group that I follow on Facebook, most posts are restricted to being answered only by autistic voices. Sometimes it’s hard for me to bite my tongue but it’s been such an incredible blessing for me. When I’m forced to shut up and listen, surprisingly enough, I tend to learn all sorts of shit I never would have otherwise considered.

For example, I didn’t know that Autistics don’t tend to love being referred to as “people with autism”. Instead, many prefer to be called “An Autistic Person” or even just “Autistic”. Part of this is because “with autism” implies that autism is some kind of disease or suggests that it could be cured. Autism isn’t some glitch in an otherwise typical person… Autism is a whole other operating system!

And then there’s the matter of “support”. Not all “charities” are created equal. If I hadn’t done some poking around, I may not have ever known that there is a massive pushback from autistic people against one of the most prominent “charities” around. Once I started digging deeper into this controversy it was easy to see that these grievances are not unfounded. If you’d like to know more about this issue you can click on the graph below.

Autism Speaks has only 1 autistic person out of a total of 30 individuals on its Board of Directors. By contrast, 25 out of 30 board members represent major corporations.

It’s a good reminder for all of us, I think, to really look into the charities that we support.

One of the things that I really didn’t know and was surprised to learn was that there’s a resistance, even a resentment towards those who identify themselves as an “Autism Mom”. I actually think I had a little wave of embarrassment come over me because I know I would have taken on this term to define who I have become. So what’s the deal with the autism warrior parents and why are they considered so cringe? Here’s the deal.

`As I understand it, it comes down in large part to the way that many of these parents and parenting groups have chosen to represent themselves online and the ways in which they have represented their children. In effect, there is a big difference between parents of neurodivergent children seeking out support from people in a similar situation as opposed to parents using social media as a platform to vent and complain about the difficulties that come with their role. In some communities it’s fairly common to see images of autistic children in crisis which serves only to shame. You don’t have to look far to find parents of neurodivergent children who are fully engaged in a game of “who is most miserable”, and while I understand the frustrations that these people are feeling, ultimately this kind of parental coping strategy is disrespectful to the autistic person in question. It actually kind of dehumanizes the child while the adult sighs and says, “do you see what I have to deal with!?”

It’s so odd to me because… yes I get frustrated. Yes he’s a full-time job. Yes it can be difficult in ways I never even imagined but at the end of the day, Spencer is my happy place. The hardest thing about this journey so far is in having to deal with everyone else’s hang ups.

One of the things that I’m quickly learning is that the general public doesn’t really know what to say or do when it comes to discussing autism. I’ve mentioned before this weird thing that people do when they learn about his diagnosis where they apologize to me as though he’s died. Autism is still shrouded with mystery for many people, and can be confusing because unlike other diseases or disorders it doesn’t often look the same from one person to the next. We have made strides as a society in that we no longer keep autistic people hidden away or institutionalized, but we still have plenty of work to do before we can say we’ve found acceptance.

As I’m out navigating the world with Spencer it can be hard to know exactly what I’m doing. My main concern is to make sure that he’s happy and comfortable whenever possible. It’s my job to advocate for him. It’s my job to protect him. Spencer doesn’t speak but as days go by and he gets older, people have bigger expectations of him. More often I find myself explaining why he isn’t answering their questions or even acknowledging their presence. When they find out that he’s non-verbal people often act like that means he can’t hear them, or that he isn’t thinking. I know my son way better than the people who filled out that report, and while I know that he’s delayed in some ways, there are also really cool things that he does that a neurotypical child would not. I know that he’s going to do amazing things, and even if he never finds his voice I know he’ll find a way to share himself with this world.

Leave a Reply