The following is written by my beautiful daughter, Kai, who is diagnosed as Autistic, as is one of her children. She is an advocate for the Autistic/Neurodivergent community. Her empathetic and compassionate insights shine an educated light on the realities people on all levels of the Autistic Spectrum face.
I’ve been thinking about something a lot.
I’ve been thinking about something a lot.
Low support needs autistic people aren’t fully welcome in the autistic community OR in the non-autistic community.
(Low support needs is just like it sounds – an autistic person who doesn’t need as much help doing everyday tasks as someone who is high support needs or medium support needs but is still autistic.)
What I mean is there’s a “war” of sorts going on between parents of “high support needs” autistic people (who are generally non-speaking) and “low support needs” autistic adults (who are generally speaking or semi-speaking.)
These parents refuse to listen to the lived experiences of adult low support needs autistics because they, the parents, assert that even though they’re not autistic, themselves, they are experts in their own children more than any stranger on the internet could ever be, autistic or not, and say that since we don’t face the exact same challenges that their children do, our experiences are irrelevant to them.
As a parent, I can actually totally understand that. One of my children isn’t autistic and the other one is. Even though I’m not non-autistic, myself, I certainly know my non-autistic child better than some random non-autistic person.
However, a random non-autistic person might actually be able to give me unique insight into my non-autistic child’s behavior and needs that I never would have considered, so I don’t fully understand the total embargo that parents of “high support needs” autistics have on listening to “low support needs” autistic people.
I’ve associated with “high support needs” non-speaking or semi-speaking autistic people before. I do understand that I have an advantage of sorts over them in that I am not only able to speak, but because of my brain’s instinct and ability to mask, I am better able to blend in.
But what no one seems to realize, certainly not the parents of “high support needs” autistics who absolutely refuse to listen to someone like me (because in their mind I can more or less get along fine because I can speak and blend in) is that I DON’T “get along fine.”
I DON’T seamlessly blend in with neurotypical society. My mask can only fool someone into thinking I am neurotypical/non-autistic for a very short time. And not only that, but I have the same sensory challenges and meltdowns and shutdowns as “high support needs” autistics do.
It’s not like I’m Neurotypical Lite or something. Being autistic in this society IS a disability. I AM disabled purely by being autistic, and also by the many comorbid physical and cognitive conditions I have which are more prevalent in autistic people.
But it’s like no one believes that, not these warrior parents, and not the neurotypical world. They both share in common the belief that since I am good at (for a short time) hiding my disability that I am pretty much not disabled, and therefore any time I talk about disability, I am being disrespectful to the people who are “really” disabled, like “high support needs” autistic people.
SO, NO ONE TAKES MY EXPERIENCE SERIOUSLY.
There’s an old meme about this very thing and I of course can’t find it, so I’ll badly paraphrase it:
“Person: You’re so weird. Why are you so weird?
Me: I’m autistic.
Person: Oh. Then why are you so normal?”
It’s not that neurotypicals don’t notice that someone like me is “weird” and a little bit “off” according to neurotypical social standards, it’s that when they do and I say that I am autistic, almost without fail the response is: “wOw YoU mUsT bE sO hIgH fUnCtIoNiNg i NeVeR wOuLd HaVe GuEsSeD.”
It’s that for whatever weird reason, people assume if you’re not THE MOST this thing or THE MOST that thing, you don’t qualify to identify with that thing. There is just zero room for nuance.
And that means there’s zero room for autistics like me, anywhere. We’re somehow simultaneously too weird and too normal.
But the fact of the matter remains: I AM autistic. I AM disabled. It DOES impact me every single day. Yet on top of my challenges, I have to deal with people basically insinuating that I’m appropriating someone else’s disability, that I’m trying to lump myself in with others who are “really” disabled.
It’s like these parents, and neurotypical society, feel that I am trying to invalidate their struggles as caregivers to autistic people who DO need more care than I do, in saying that I am autistic and disabled.
It’s like they hate me before they even know a single thing about my actual reality. They assume that speaking is the end all be all and that if I can do it, I cannot possibly understand their or their children’s day to day realities. And you know what? MAYBE I DON’T. But why the HELL does that mean I have no right to MY OWN reality!?
Why is it that since I don’t need help going to the toilet and I’m not intellectually disabled and I can speak, this invalidates the rest of my experience as an autistic person. Why?
Why is it that it seems like no one is willing to believe it’s a SPECTRUM, with each autistic person having a different combination of traits and struggles that are unique to them?
Neurotypical people accuse autistic people of having “black and white” thinking but if being unable to see autism as a spectrum isn’t black and white thinking, I don’t know what is.
Refusing to understand that autistic people may manifest autistic traits to varying degrees and in varying ways and in general look and present differently from one autistic person to the next IS black and white thinking.
Believing you’re either super super super super disabled by your autistic traits and challenges, otherwise you’re not “really” autistic, is black and white thinking.
I think at least PART of the reason low support needs autistics, like myself, have drawn so much fire is that the vast majority of us oppose brutal therapies like ABA and try to educate these “warrior parents” on the harm it causes. We have said things like “since your child can’t speak, they can’t tell you whether or not the ABA is harming them but speaking autistics who have gone through it and now have PTSD can say that ABA harmed them.” They then get REALLY offended at the idea that A) someone else other than them has a right to speak for their child (but ironically listen to every single word of “experts” who say their child needs this therapy) and B) that they could unknowingly be harming their child.
So, we really get villainized for trying to advocate against this multi-billion-dollar organization which lies to parents like these warrior parents and forces these kids who CAN’T speak for themselves into essentially conversion therapy that does cause them harm.
But even without that being factored in, we just get “othered” wherever we go.
Except, you know what? When I’ve had the chance to interact with “high support needs” autistic kids and adults? I’ve interacted really well with them. THEY didn’t make me feel othered. We had a rapport. I even had caregivers of “high support needs” autistic kids tell me they were shocked how much I was able to get their child to speak or open up.
So no, I don’t know someone’s kid as well as they do, BUT I might be able to offer SOME insight into the autistic experience, even if I do not, myself, fully understand what it is like to never speak, or to take care of a child who never speaks. I have never claimed to speak for those parents or those kids or high support needs autistic adults.
But I sure as hell would LOVE to be able to speak for MYSELF without people from all sides coming in to tell me I don’t know what I’m talking about since I’m not high support needs. No, I’m not high support needs. I am probably more like medium support needs but because I am high-masking, I was diagnosed as low support needs. And my viewpoint is STILL VALID even if I don’t speak for every damn autistic person out there.
Like anyone I can ONLY speak for myself. And I wish people would just fucking let me already. You have no idea how awful it feels to go through life feeling like you don’t belong anywhere.
I do belong. I belong to myself and to a group of people who are medium to low support needs, like myself. Our experiences may be unique on the spectrum but that doesn’t negate the validity of those experiences or our right to talk about them. You don’t have to be THE MOST disabled you could possibly be in order to have the right to talk about the level of disabled you are.
Get used to us speaking up for ourselves because we’re not going anywhere.