I recently was thinking about a problem I’ve seen popping up in my feed lately, voiced by autistic parents. Not autism parents, autistic parents. As in, parents who are themselves autistic. They may or may not have children who are also autistic, but it is usually assumed when they say they are autistic parents that they are neurotypical parents of autistic children. This is because the label of ‘autism parent’ has been used for a long time to describe parents of autistic children.
Off the top of my head and with my 6:00AM foggy brain, I don’t think any other group does this. My fiancé was adopted from Korea, and I don’t think his parents have ever referred to themselves as ‘Korean parents’. That would imply they are parents who are Korean, which they are not. My short-haired mom doesn’t refer to herself as a long-haired braided mom just because I have long hair in a braid. Gay parents aren’t parents of gay children, they are parents who are gay.
You might as well have a cis-gendered mother refer to herself as a male parent if she gives birth to a son, as if having a male child makes her a male parent.
So why are the parents of autistic children called autism parents?
I’m not sure what co-opting this identity accomplishes. I think some parents just find out that their kid has something, find a community, and slip into the preset of that community in order to find support without thinking too deeply about the label. I’m not sure how it started though. I don’t even think other groups of disabled people have this problem. When I google ‘disabled parents’, I don’t find pages about parents of disabled children – I find pages about parents who are themselves disabled. I can google ‘blind’, ‘deaf’, ‘mute’, ‘paralyzed’, and ‘multiple sclerosis’ parents and not find any immediate pages about parents of children with those various conditions. Even changing ‘disabled’ to ‘disability’ gets me the same results – talking about parents who are disabled. Yet, when I google ‘autism parents’, here is the result:
Why does this continue? There are parents who are autistic trying to find resources and connect with each other, and instead they end up being swallowed or erased by websites geared towards neurotypical parents of autistic children. There are autistics like myself who want to become parents one day struggle to find resources geared towards us. Perhaps this has something to do with the mistaken assumption that autism magically disappears at the age of eighteen. I’m not sure what legally being allowed to vote for the first time has to do with my neurology, but apparently some people think it’s linked? (Sarcasm)
As I was pondering the problem of the autism parent label and how it erases and makes things difficult for autistic parents, I thought about how there really isn’t a ‘neat’ alternative term. ‘Parent of an autistic’ feels bulky to say the same way ‘person with autism’ feels bulky – though you can see my previous post about the subject of language as to why there are other problems with that term. As I was thinking, the phrase ‘autism adjacent’ popped into my mind. And thanks to a quiet love of alliteration, it got its hooks in me.
Autism Adjacent literally means you are next to autism. You yourself do not have it, but someone you care for or love does. It sounds better thanks to alliteration, it says what it means, it doesn’t erase autistic parents, and it doesn’t have the same initials as ‘Animal Planet’ or ‘Alien v Predator’. I think that’s a win all around.
So, let’s see if this can be a thing. I know I’m a small blogger in a small corner of the internet, but I think ‘Autism Adjacent’ could be the much needed alternative to let autistic parents reclaim the space that should have been theirs all along. Maybe it’s too late for real change – I worry that ‘autism parent’ is too embedded into the culture of society to be easily removed, if simply because of habit. But I think it can happen.
Agree, disagree? Leave your thoughts in the comments section.
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