K is for Kids (But Probably Not the Ones You Thought)

KThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

K is for Kids (But Probably Not the Ones You Thought)

No, I don’t mean all those Autistic kids. I mean Autistic people becoming parents – having kids of their own. Sometimes Autistics have Autistic kids, sometimes not. Either way, Autistics who become adults are nearly invisible and Autistics who become parents are even more invisible than that.

Autistic parents have a hard time finding each other. they have a hard time finding information about their own situation — Google “autistic parent” and most of what you will end up with are links to information about being a non-autistic person with Autistic kids. Lots of Autistic parents are keeping a low profile or even “in the closet” if they are able to pass as non-autistic folks at all. There is a realistic fear of having one’s kids taken away by a society and a government that believes Autistic people are not competent parents. Other Autistic parents struggle with people’s attitudes — lots of people are very interested to hear about parenting Autistic children . . . until they realize that the information is coming from an Autistic adult. I would think people would be more, not less, interested in hearing what an Autistic person has to say about raising Autistic kids, but it turns out that, too often, that’s not the case at all.

Since I am not parenting kids, I want to turn to the voices of those who are. My dear friend Lei Wiley-Mydyske has a lot to say about what it’s like to be an Autistic adult parenting an Autistic kid. The way that people talk over and through Autistic people is doubled when they are talking to an Autistic parent of an Autistic kid. “They told me that I don’t know how his brain works like they do, because they are behaviorists and professionals who know about special education and I am just a radical whose brain is flawed just like his.Lei writes. (Pease follow the links and read every word she has written about how Autistic parents are silenced!) She is his parent. She is actually Autistic. And she is discounted as the person who knows the least about what he needs, because the school has autism awareness with no autism acceptance.

Being Autistic so often means being shut out of our own lives. People want to listen to what everyone else has to say about autism but get dismissive or angry when actually Autistic people want to join the dialogue that is about . . . . US! Can you imagine a world where only men are permitted to discuss women’s issues? What if only whites were allowed to talk about black issues? But we do live in a world where (unless you’re Temple Grandin) no one wants to hear what Autistics have to say about autism. We live in a world where the loudest voice about autism — Autism Speaks — actively works to silence the voices of actually Autistic people.

What? You didn’t know about that? The Autistic community got Google to change hate speech in their search engine and Autism Speaks reported it as something Google did, not something Autistic activists got Google to do. Autism Speaks made a documentary about AAC and focused only on the parents and caretakers, shutting out and denigrating the voices of people who actually use AAC to communicate. Autism Speaks quoted an Autistic  who protests them, twisting her words to make it appear as if she supports Autism Speaks and persistently refused to remove her words for years.

But as upsetting as it is that Autism Speaks does this to us, it is even more upsetting that the large organization is just echoing the way a majority of the general population respond to us. Look at the parenting blogs of non-autistic parents of Autistic kids and you will see that they have tens of thousands of followers. Look at the equally well-written blogs of Autistic parents of Autistic kids and you will see hundreds of followers, maybe a few thousand. There are a few Autistic authors with a high readership, but the bloggers talking about parenting Autistic children from the perspective of being an Autistic parent? Whatever the digital equivalent is of crickets chirping, that’s what’s surrounding their words.

Huffington Post ran a series of personal essays titled “Autism in our Family” and all the essays were written by non-autistic family members of Autistic people. Lei Wiley-Mydyske wrote and asked them why they had no Autistic voices and Huffington Post invited her to submit an essay. She wrote about being an Autistic adult raising an Autistic child and Huffington Post turned it down. Now, while I think it’s well-written, it could have been turned down for not being up to HuffPo’s preferred level of writing quality. But I would have thought that the fact that it was an essay about raising an Autistic child while Autistic one’s self would make the essay valuable enough for HuffPo to be willing to work with the author to help make the essay meet their publishing criteria. But that’s not what happened. And, once again, an actually Autistic voice went unheard.

Although you can hear it now. Lei published her essay in its entirety on her blog. “Every day, my son and I face discrimination and stigmatization for being openly Autistic. For all the “awareness” that is so popular now, there is very little understanding and even less in the way of authentic inclusion. We both need a lot of support in this world, and getting that support without being faced with a lot of hostility and resentment is difficult.” – from Autism and Activism in Our Family

Cynthia Kim is another cherished friend who is also a well-written Autistic parent. Not only is she a parent and actually Autistic herself, she interviewed many other Autistic mothers for a three-part article about parenting on the spectrum.

“If you Google “autism” and “mother,” you’ll find hundreds of references to mothers of autistic children for every mention of mothers who are autistic. It would be easy to assume–as perhaps many people have for a long time–that autistic mothers simply don’t exist. But if you dig a little deeper, you’ll find that not only do we exist, we have a unique experience of what it means to be a parent.” – from part one, Motherhood: Autistic Parenting

“In reality, there are already many autistic parents. Yet we seem to be largely invisible when it comes to autism-related supports. Services are available for autistic children and for parents of autistic children and for autistic adults who live with their parents or in supported living arrangements. But supports for autistic parents, regardless of their children’s neurology, are mostly absent from the landscape.” – from part two, Motherhood: Autistic Parenting and Supports That Make a Difference

“However, as an autistic parent, we have a secret weapon–one that can make our autistic children’s lives less challenging than our own have been. Kim echoed the sentiments of many autistic moms, explaining how she and her autistic son have a special bond: “We love and accept each other enough to be ourselves. I am able to help him put words to things he doesn’t yet understand. I am able to help him figure out sensory issues that bother him and help him find solutions that work for him. I’m a problem solver and I work at something ’til all the kinks are worked out.”

“Acceptance and understanding were common themes when autistic mothers talked about their parenting strengths. “It has been a huge benefit to have a shared neurology with my son,” says Puddy. Not only is she able to read his stress signals and coping levels, helping him to prevent escalations in his behavior, she says that “he finds great comfort in the fact that I can understand his need for routines and stimming that others see as odd.”” – from part three, Autistic Motherhood: Honoring Our Personal Choices

K is for Kids and that’s a realistic part of so many Autistic people’s lives. Autism awareness knows nothing of the many mothers and fathers out there who are actually Autistic themselves. Because autism awareness is so entangled with a rhetoric of tragedy, the very idea of Autistic parents would be shocking: what if they passed their genetics on and had Autistic children?! From an autism awareness perspective, the thought is horrifying. But autism acceptance recognizes that there are already hundreds, probably thousands, of actually Autistic people quietly parenting, invisible to society, struggling and celebrating. It is time to move past awareness and accept the Autistic parents among us, offering encouragement and support. And listening to them. After all, as much as I do love and respect my friends who are non-autistic parents of Autistic children, who can you turn to for the truly insider view of raising Autistic children? Obviously Autistic parents of Autistic children. These are the parenting experts who understand and can explain how to nurture the autistic neurology — they literally know it inside and out.

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3 responses to this post.

  1. I love this whole series. Thank you ! <3

  2. I subscribe to TIME Magazine, European edition. TIME’s current double issue (100 pages) about the world’s one hundred “most influential” people is probably the one they sell most of every year, I suspect. Autism Speaks must be made of money; their ad is the ONLY two-page spread. Their message is that early diagnosis is important. While it doesn’t explicitly present “a rhetoric of tragedy”, its 2-page b/w photo of a child’s eyes with the pupils replaced by stark-white octogons does give that impression.

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