This is part of my free newsletter. If you find that you like what you read here, please consider supporting me financially here ($5/month). You’ll have access to not only this free weekly newsletter but other postings (such as more newsletters, Q&As, and advice on parenting, marriage, Autism, and more). Please feel free to share this newsletter in its entirety, certain posts, or refer people to this space. Your paid subscriptions will go towards Aidan’s S2C lessons, as well as materials and resources to help me learn how to help him on his spelling journey.
My latest post on Instagram talked about the common phrase “Autism doesn’t have a look” that is tossed around like hotcakes within the community. It’s most often accompanied by some cute graphics or a snarky comment or story. I wrote about this phrase a few times before and I wanted to tackle it again. It never sits right with me, as I explained in this post:
I didn’t expect the reception it received, gaining far more traction on Instagram with over 5K likes and many comments. The majority of responses understood where I was coming from, many sent DMs thanking me for sharing this, and I was like, “okay, maybe I wasn’t the only one out there who felt some kind of way about this.”
It’s always a good thing for me to know I am not alone in something, but I have no problem standing on my own.
There were many, and that is what this post is addressing, that didn’t quite latch onto what I was saying or sat firm in their defensiveness, unwilling to allow another perspective to pass their ear for consideration.
I don’t normally take the time to expand on something I felt I provided a lot of information and context for, but on matters I find to be incredibly important or those that I feel I can back up even further, I will. This is one of those times.
So, here you have, “The Exploration of Autism Doesn’t Have a Look.”
Let’s start with the comments that didn’t have a firm grasp on what was being shared in the original post. Two of the main arguments:
Many were attempting to explain to me what they felt was meant by “Autism doesn’t have a look,” and some were even stating that the phrase was conditional and only applicable to those like my youngest and myself.
Much of the explanations were, “it does not mean that Autism isn’t different for everyone it means that Autism has many looks and to not just focus on its presentation in one specific way.”
Not gonna lie, number two was my justification for this phrase for quite some time.
Until it wasn’t.
I felt that on this part of my journey I am not allowing myself to talk my gut out of feeling what I need to feel about any given thing. And my gut told me that this phrase was of no use to me, my family, or my advocacy. I just needed to sit down and figure out why that was.
And that social media post was but one part of that explanation. This expansion is another.
The comments and messages bothered me because many simply regurgitated the same messages I put into the original post but attempted to twist them into something that fit “Autism has many looks and we should not focus on its presentation in one specific way,” and not actually what it was that I was saying.
Many offered excuses for those who say these things and I felt as though they questioned my ability to discern the nuances of my experiences with those who say these things.
First off, “Autism doesn’t have a look” is a blanket statement, period. And it is used to be applicable to all. Not some. Not those what present this way and not that way. But ALL. Many of the comments wanted to just focus on its meaning something for those like me and Jojo but didn’t mean anything for Aidan and for them to be okay with being exclusionary because it benefited some of the group was actually on-brand for this community but bullshit to me.
I ain’t trying to live by blanket statements, but some want to tell me that it’s only a blanket for certain folks.
I mean, this a whole ass blanket! And ppl wanna tell me it got holes in it.
My son is more marginalized than I am. I support nothing that will de-center his experience. My speaking/writing on this and hoping for a deeper consideration of the words and phrases we use make some uncomfortable, upset even, but I truly believe we all benefit from a deep consideration of the whole of who we are, and who each other is, within this diagnosis.
In centering him, I am fighting for myself as well.
I’m absolving no one of their responsibility for excluding my oldest. And those like him.
It’s just weird to me that I explain that the phrase feels exclusionary, and some are confirming it’s exclusionary but making it into a thing that is supposed to be describing the breadth of Autism experiences and that has been the most baffling thing to read in the responses and messages. Nonsensical to me.
“Autism doesn’t have a look.”
I am about to get literal first. Then I will get into everything else.
They ain’t saying autism has many looks, they aren’t saying autism can look different in each body, they aren’t discussing those differences and talking about the varying lived experiences of us all. They are opting for cute and quick responses to things they find offensive because easily digestible content is King here. They are saying Autism doesn’t have a look and they are using it in response to those who feel as though Autism looks a specific way.
So, in an effort to defend their placement within a diagnosis to people who have no business speaking on their existence, they excluded my son in the process. Because his Autism does have a look. His Autism does present itself in a way that gives people pause and puts them on alert.
Now, the “everything else” part. How I feel about this phrase goes deeper than the specific words used. Our words can drive our actions, they are manifestations of our thoughts. The words you speak and the words you use play out in how you feel. It’s all connected. It’s in how they share, the words they write, the work they do, the issues they support, the things they condemn…I didn’t just read a short phrase and go off from there…I read everything else they wrote. I listened to everything they said. And l don’t see my son.
I’m not alone in my interpretations here. There are many parents, many Autistic ppl themselves who feel as though they cannot even talk about their Autism or their child’s being more “visible” than others. There have been a few Nonspeakers who talked about being visibly Autistic and were piled on and claims of internalized ableism were thrown around when these individuals were literally trying to explain how their disability presents and how they are treated because of it.
It’s not enough to state that “Autism has many looks and let’s not focus on one presentation of it.” This community has to back up what it says. And often, it does not. And I mean everyone in this community, from the Autistics to the parents to the therapists to the researchers to…everyone that has some kind of association with Autism in whatever capacity. If you are going to state that there are many looks, then act like there are many looks. Don’t make claims that someone is living with internalized ableism because they point out that their Autism is one that causes incredible distress and challenges to their daily living.
There are many experiences to Autism but this phrase ain’t talking about that. Society will assign meaning to us that is not only descriptive but prescriptive, governing how they will treat us, I am able to gauge the nuances of my own experiences with encountering those who use “Autism doesn’t have a look” and feel confident enough to ascertain they meant to deny the entirety of my son’s existence because they weren’t actually thinking of him at all, because this phrasing is “more for myself and my youngest, than it is for my oldest.”
When I say we don’t talk about it enough. We don’t, we don’t talk about impairment enough. We don’t talk about support needs any further than to state “we all have varying support needs” but rarely is anyone diving into that.
“What this phrase really means is Autism has many looks,” and then proceeds to only talk about those who present a certain way…all the while attempting to police how others who present outside of this dominant perspective see themselves and their Autism, negating how this world will impress upon them and how that influences how they are treated.
This community has a knack for tucking privilege in with things that are truly exclusionary that they pass off as inclusive. That’s bothersome. At least to me it is. And I am in my “no-nonsense” season, so I am drawing attention to all of it.
We are leaving so many individuals and their families out of vital conversations and advocacy efforts. This “Autism doesn’t have a look” don’t hit the same for me. And I meant that with my whole chest. I don’t know how else to explain it. Maybe one day I will make a third one and round out a trilogy, much like how I did the first time I addressed this. But for now, I am going to leave this as is.
Y’all be easy.