I remember when I was newly diagnosed at the age of 13 I searched “tools for autistic middle schoolers” and everything that came up in my search was articles written for teachers and parents, never for the autistic themselves. This created a space where I felt alone and like my voice didn’t matter. I only got worse during high school, my needs didn’t matter, the school only took what my mother said about my needs into account, this made a situation where I wasn’t able to go to class, had to be sent to a special school program before I finally found a high school with a spec ed department that listened to me and my voice.
The lack of resources for autistic people puts all the responsibility on the parents and often this leads to the phenomenon called “autism moms”. For years when I was searching for online communities for autistic teenagers, I came across Facebook groups titled things like “moms of high schoolers with autism” I was so desperate for support that a few times I joined some of these groups and what I found made my struggle to find resources make a lot more sense. In these groups, parents were complaining about how they resented their autistic children and blamed them for their problems. In between these awful things, parents shared about their children were also parents oversharing, filming their children’s meltdown, and posting about their private moments under the idea of “raising awareness” while not taking into account that their children did not consent to it being put online.
Another thing I noticed in these groups was the “autism warrior” posts, you might think that autism warrior meant empowering autistic people, unfortunately, you would be wrong. Autism warrior was about parents of autistic kids meant to put themselves in a place where they got told how great they are for providing basic care to their children. Photos with taglines like “I’m an autism mom, what’s your superpower?” and “autism won today, but I won’t give up”. I’m not saying that parents of autistic kids don’t deserve support because they absolutely do, just making your identity around your child’s neurotype causes harm to actual autistics. It creates a narrative that autism is an awful thing that happens to a child rather than a brain they are born with. These parents often tend to advocate for harmful practices and interventions that autistic adults are trying to advocate against as people who went through it.
Something I fear that will come out of “autism moms” communities is these parents holding their children back because being the “autism mom” is part of their identity. I recommend the book “The Loving Push” by Temple Grandin who in this book helps explain to parents how to help their child to be successful. I think we should be listening more intently to autistic adults for tools that help autistics than neurotypicals that just happen to be around and work with autistics.
I recommend reading this article that goes into detail about the online discourse happening between “autism parents “ and autistic adults. It shines a light on both sides and provides some valuable input.
https://www.today.com/parents/autism-wars-why-parents-autistic-adults-are-battling-t227565