Autism Parent or Autism Adjacent?

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.

mom and baby
Description: Stock photo of a woman with a baby, added text has her thinking, “Having a male baby makes me a male parent, even though I’m a cis-woman!

 

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:

Autism Parents.PNG
Picture is a screen-shot of the google search results for ‘autism parent’ referring exclusively to parents of autistic children

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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8 thoughts on “Autism Parent or Autism Adjacent?”

  1. Autism parent sounds far better then parenting an autistic in my opinion but I also understand the views of parents who have autism. When I # I use #autismparenting

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  2. Well, autism is technically a noun, not an adjective. You wouldn’t says someone is autism so autism parent isn’t applying identity to the parent in the way that gay parent, disabled, parent, blind parent or Korean parent is. I’ve never heard the term autistic parent to describe the parents of a child with autism. I would think an “autistic parent” was autistic themselves. I also think there may be other more disturbing reasons for the term autism parent. Some people assume that those who are autistic are not even capable of voicing that they’re autistic and that they’re not capable of or shouldn’t become parents. Most of the attention that is devoted to autism is focused on children. Adults with autism are largely ignored as if they don’t exist. Therefore the implied assumption is that there shouldn’t be any issue of thinking someone is a parent who has autism because there are no parents who have autism.

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    1. Unfortunately from what I’ve been reading about the experiences of autistic parents is that even when they do use the term ‘autistic parent’, they are told things like, “Oh, it must be so hard to have a child with autism!” Even when googling ‘autistic parent’, while it does get more results having to do with parents who are autistic, there’s still a typical ‘autism parent’ result on page one – though it has gotten better over the years, which is great. When I first figured out I was autistic years ago, I remember looking for resources for parents who were autistic because I wanted to be one someday, and I found a total of one blog. So that’s a sign of definite improvement!
      I agree that someone isn’t ‘autism’ the way someone is Korean, but in that same way, one can’t parent ‘autism’, so it doesn’t quite work in any context… I suppose it’s an ear-worm that’s caught on for most people, and I don’t see them as giving it up. Plus it’s not as harmful as demanding all autistics describe themselves as ‘people with autism’. Since it’s not harmful and language use changes over time, I don’t see anything wrong with it so long as it’s not erasing another group of people – that’s my only real issue with the term. I think it’s just cleaner and kinder to describe being adjacent to the world of autism than to be autism parents.

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  3. Humans seem to need labels by which they can identify themselves and others. A label distinguishes you from people who aren’t labeled that way (with the too-often result of letting you feel superior), and helps you find people who are enough like yourself to be similarly labeled so they have the potential to be friends/supporters. The problem is a human one, a tribal thing, not limited to autism. It’s a part of politics, religion, pretty much any topic you care to take a close look at. “Autism adjacent” is no improvement; it’s just another label that people can argue about and set up definitions for who’s “in” and who’s “out”.

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    1. I don’t use labels to feel superior, I use labels to find similar groups of people I want to hang out with or get advise from about issues they can relate to due to similar experience. If a conservative-minded Christian just walked into any random place of worship and talked to the clergy there about their religious concerns, it probably wouldn’t be very helpful if they walked into an unlabeled Hindu temple because there would be a disconnect between their very different beliefs. If they were interested in learning about Hinduism, that’s great for them and I’m not knocking coexistence or interfaith relationships/friendships/communications at all – but if you’re looking for the answer to whether your dog will go to heaven, talking to someone who’ll tell you all about reincarnation that you don’t believe in probably isn’t the best way to go. And you can’t figure out which people to ask about that without labels.
      Likewise, autistics label ourselves to find each other to help each other deal with issues unique to our group that those outside the group just don’t understand. Same with every other person out there in one way or another. A neurotypical is not going to understand my experience with a meltdown the way an autistic will, and pot-luck talking to people isn’t very efficient when I’m looking for someone with the same experience.
      It’s not about who’s ‘in’ or ‘out’. If you want to see it that way, pay attention to who does get pushed out: currently autistic parents get pushed out a lot. I’ve read complaints by parents who are autistic getting kicked out of ‘autism parent’ groups because they’re autistic – even if they do have autistic kids too. That seems like it defeats the purpose. And then finding new groups becomes difficult because so much is geared towards people with issues different from what they face. Letting autistic parents have their label and their support groups talking about their unique issues isn’t trying to push anyone out. It’s just trying to make language clearer without miscommunication and exclusion. Since literally no other group has parents that identify themselves by their child’s identity in the way autistic children’s parents do, I think it’s just logical for that to be where the main adjustment is made, for purposes of clarity.

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      1. I didn’t intend for “you” to point at you, personally, but I apologize if you saw it that way. I do agree with you about much of what you’re saying, but in a way, you strengthen my point that any description or definition will lead to disagreements rather than understanding. That’s just the way humans are, and we have to deal with as best we can. Even when there’s no intention to push anyone out, someone will inevitably see it that way.

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  4. I quite like autism adjacent. It could then be applied to siblings, aunt’s, friends etc as well as parent. I’ve come across a couple of actually autistic parents with autistic children who really need to find support and I see their voices getting drowned out by neurological parents of autistic children. All parents need support. Each parent should have the right to be able to find it.
    I’m an older autistic woman with two grown up children who display autistic traits.

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  5. The only other group I’ve heard who co-opt their kids’ identity like this is “Special Needs Parents”.
    It’s a similar situation to “Autism Parents” – people initially seeking a group who understand their experiences (which differ from the ‘typical’); whose perception of themselves becomes so bound up in what they do for their children that it becomes their own identity.

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