There’s a widening rift in the Autism community nobody’s talking about.
Nate Rayfield on Unsplash
Parents of Autistic kids are seeking the support of Autistic adults to help interpret their children’s needs and behaviors. Sometimes, they are feeling attacked by Autistic adults who want them to change the terms they use to describe their children--terms they’ve been given by professionals. Autistic adults are accusing them of using therapies that are abusive—therapies recommended to them by professionals touting them as the “gold standard” in treatment. Parents are being asked to let their children play strangely, use devices whenever they want, and avoid everyday situations.
Autistic adults want to change things for the next generation of Autistic kids by telling parents about the ways parents, schools, and therapies tried to force them into being like everyone else. They felt alien, isolated, wrong, disliked because if they could fake what was requested, they did at the cost of their sense of self, self-esteem, and comfort. Autistic adults respond when parents ask for their help by telling them they are looking at the situation from the outside. They share what it’s like for their children. And sometimes, they are criticized for being blunt or rude. They are told they are wrong because professionals disagree with the lived experience of Autistics. They are told they aren’t really Autistic, aren’t Autistic enough, or are “nothing like my child.” They are adults.
After heated interactions, parents of Autistic children retreat to spaces for other parents. Autistics move to protected Autistic spaces. Some don’t try again. The impact is hurting Autistic kids.
Autistic kids need their parents to understand them. Parents of Autistic kids need to have that knowledge through interaction with Autistics. Autistic adults feel the need to ensure that past mistakes aren’t repeated.
Parents want to understand their children and want to be the parent they need. They experience a conflict: who is right? Thankfully, there is more and more attention being brought to the issues Autistic adults are defining and more research being conducted to bring the professional communities along. Science doesn’t always move quickly. Especially social science. There needs to be repetition. Research performed is the research funded. Research funding can have a spin effect on research. For decades, the research on Autism was focused on cause and cure. The biggest Autism charity in the US focused its campaigns on fear and stated their mission was to cure Autism.
Autistic people feel targeted. They are targeted. They are targeted for bullying, ableism, challenges to many positions, their true diagnosis, and their intelligence. Many of the people lashing out at Autistics are parents of Autistic children asking for support. Some of them may even be Autistic themselves.
Autism is a genetic and heritable condition. We’ve identified over 100 genes associated with Autism. These are passed from parent to child. This means that many parents of Autistic children carry the genes for Autism. Many are Autistic and don’t know it.
I can relate to this personally. I was 33 when I had my daughter, 35 when she was diagnosed and 36 when I learned I was also Autistic and ADHD. Suddenly, a quirky, awkward life that included anxieties and depression, social misunderstandings, disinterest and leaning into the weirdness my peers described made perfect sense. This came about for me by starting in spaces for parents of Autistic children and then looking to Autistic adults. It was realizing how many parents looked like me, and how many Autistic women looked like me.
Have you ever been a part of something that was a news item? Maybe you had a family member be a victim of a crime or a friend who opened a business and these were featured in a news story? If you have, you are likely to see that the reporter’s version of the event isn’t quite right. Motivations are misconstrued, event timelines are erroneous, whole pieces of the story were missed by omission of choice or ignorance. This is the same in the professional view of Autism, which has been totally dominated by non-Autistic researchers who made their research about observation and not experience.
As a professional, an Autistic adult, and a parent to a non-speaking Autistic child, I have a perspective that not everyone is privy to. Here’s what I can tell you: professionals looking at Autism from the outside are missing part of the story. This is why the rift needs mending, and why research needs to include Autistics as partners and leaders.
I know change is coming as more Autistic talk about their experiences and bring their expertise to every field knowing their differences are Autism. When we look into history, we see Autism in the greatest minds. Not all Autistics are geniuses—some have other conditions that cause intellectual disability—but Autism is not a disability of intellect. Most Autistics are average or above average intelligence. As I look around at my Autistic siblings, I see therapists, programmers, researchers, scientists, doctors, parents, students, artists, writers, gamers, and more. I see authentic people yearning to be free and to give the gift of self-acceptance to the next generation of Autistic kids.
It is my belief, the mediated groups for interaction between parents and adults are what we need right now. Groups such as Ask Autistic Adults on Facebook offers a place for parents to ask questions and be answered by Autistics in a space that is moderated and protected for the privacy of children and the mental welfare of Autistic adults.
Until parents and Autistic adults can speak the same language, we need interpreters and boundaries. Above all, we need to keep working together for the good of Autistic children in the hopes of better experiences and outcomes for children, families, and Autistic adults.
Parents: Autistic adults are doing this difficult, free labor for you and your children. Everything they tell you is their expert opinion based on life experiences. It’s a valuable resource. Professionals are starting to catch up in understanding Autism from the inside and beginning to correct errors in understanding. We wouldn’t want everything we know about pregnancy to come from people who have never been pregnant. Research and science from the outside has a place but it’s also not a full or correct picture without knowing what it’s like through experience. Directness is a part of being Autistic. Sometimes that can feel like an attack. Try to think about the "meat" of comments you receive without lashing out.
Autistics: thank you for helping parents and children. I’m not going to ask you to make changes in your approach. I know things are better received when delivered gently, but the point can also be missed that way. Your expertise is too important not to share but remember to take care of yourself first. You don’t need to do this work if you aren’t a place to.