There are many, many, many excellent posts by other actually autistic people about the problem of functioning labels. Please note we are specifically talking about labels such as high, low, mild, severe, etc. Not the actual label of autistic. That’s a helpful one!
I have linked to a lot of great blogs in my Resources section, so I’m not going to reiterate them all here. This post? These are my experiences.
When I was first diagnosed, I used functioning labels for myself.
Why? I didn’t know any better. This is important to note.
Attn parents, teachers, caregivers, recently diagnosed autistic people: When members of autistic communities call you on using functioning labels, we’re trying to educate you faster than some of us were educated. (It was over a year for me, maybe over two. And I feel bad about the harm I caused to others, and to myself, in the process.) So please try not to get your back up and get stubborn and tell us that’s what you were told and that’s what you’re going to do!
We know. Unless we were lucky, that’s what we were told too. That’s what the “autism experts” are taught in school, so that’s what they in turn tell parents. Autistic people are trying to break that cycle where we can. Sadly we frequently don’t have a lot of luck with the “experts” (the only real experts on autism, by the way, are autistic people), so we try instead with parents and so forth.
Just because an “expert” told you to use functioning labels (by the way, this same thing goes for person first language – something most experts push and most autistic people are strongly against) doesn’t mean it’s right. So, if nothing else, respect what autistic people are telling you, especially if you have an autistic kid — because we’ve all been autistic kids so we have a really good idea of what it’s like for your kid.
So… why don’t I like them?
Let me start with why I used them to start with. Mostly this is because I was told I had high functioning autism. I didn’t know a lot about autism at the time, despite being an adult and having worked in a school — where there were autistic kids. What I knew were a lot of stereotypes about how awful autism supposedly was, so high functioning made me sound better off than those stereotypes I knew about. I wasn’t really disabled! (I am. There’s absolutely no shame in it. No shame in being autistic either!)
Seeing high functioning autism as “better than” is considered supremacy, and it’s not cool. Don’t act superior to your fellow autistics. Don’t teach your kid they’re better than autistics who are not considered high functioning.
But even as this supposedly high functioning autistic person, I still had all these difficulties! Loads of them! But supposedly I was high functioning. Guess what there’s not much of for autistic adults? Help. Resources. Guess what there’s even less of if you’ve been labeled high functioning? Yup.
I couldn’t get help anywhere. I was “high functioning,” therefore, I was presumed (mostly) competent and that I didn’t need help. Especially since I was an adult, so I got this far, why do I need help now? (Well, because I needed help the whole time and didn’t know it.) Stereotyping of autistic people, thanks largely in my opinion to functioning labels, has lead people to not really see any of us as all that competent. “High functioning” autistics get seen as more competent than our low-functioning counterparts, but when we talk about being autistic, we’re either told we don’t know what we’re talking about regarding autism because we’re “too high functioning,” or that we don’t know what we’re talking about regarding autism because we’re autistic.
Let me impress upon you all again that the only people who REALLY know what autism is all about are AUTISTIC PEOPLE.
Okay, so . . .
I can’t get help as a high functioning autistic, and by this point, I’ve moved, and starting with a brand new case in the place I’m trying to get help, and they don’t know me, and I don’t tell them anything about being high functioning — besides that I can’t get help, I’ve learned how harmful these labels are in general to autistic people. Yet, still help doesn’t happen! And I get patronized and lied to. (More on this in the future. Still really struggling with telling that story.)
If we’re low-functioning, people assume we’re incompetent, need help with everything, will never have a future, and so forth. If we’re high functioning, our challenges get overlooked and we don’t get the help we need… and we’re still not totally seen as competent. (Many of the links on my resource page explain this way more eloquently than I can, so please, please check them out!)
Person A: Is mostly mobile on their own. Can (usually) speak orally out of their mouth (this can go away if too overwhelmed, so typing is preferred), Can type. Went to school. Had a job; multiple jobs, even. Trained other people at some of the jobs. So…obviously this person really doesn’t need help, right? Not a lot of friends, but the ones they do have are really close. Married.
Person B: Can’t live on their own. Forgets to eat if they get super caught up in whatever their current interest (NOT special interest!) is, Has terrible anxiety if left alone for more than a day or so (anxiety is not part of autism, but it seems common for autistic people from what I’ve read by other autistics over the years), Unable to hold down a good-paying job, Unable to get a job which matches their actual skills, etc. As a kid, they may have had a a bunch of “temper tantrums” (they were meltdowns but no one knew it). They may have been a stereotypical “scary” kid. Few to no friends. Bullied by their classmates for their perceived “weirdness”.
Person C: Is actually Person A & B, and is me, the Autistic Octopus.
Yup. I am both high and low functioning, according to functioning labels. Most people don’t see or know about my Person B side. Parents who don’t think I could be anything like their “low functioning” kid only see what’s visible online, which is “Person A” and tell me I’m nothing like their kid and their kid will never amount to anything.
If I get super involved in what I’m doing, I’ll forget to eat. I drink lots of water, and this can fool my stomach into thinking I don’t need food…until I get so weak that now I can’t eat. I have college degrees. Two, actually. I’ve never been able to get a job related to anything I studied. Almost every job I’ve had has been in retail, which is excruciatingly stressful. I do not know how to get a job that matches my skills and education. Moving isn’t an option for a variety of reasons. I’m not being negative when I tell people this; there’s simply no logistical way to have it happen.
I’m not on disability. I qualify for SSDI, but a disability lawyer said no one (i.e. SSA) would never approve my case – because of how I’m perceived, so I’d have to apply for disability some other way. I gave up.
Person A seems to have it together, and doesn’t need help. But they do. But because they are seen as only high functioning, no help is given. No help is available. Person B definitely needs help, but because they are only seen as low functioning, probably won’t get the kind of help they truly need because they will be seen as low functioning and not capable of living a real life. (That’s depressing!)
I wasn’t diagnosed as a kid. So I was just a trouble maker at home. In school I was super quiet and reserved — I was terrified of getting in trouble because at home, punishments scared the crap out of me. But I got in trouble at home because I couldn’t hold everything in anymore after doing it in school all day. I didn’t know how to communicate what was wrong, and it presented in what I know now are meltdowns. (Note that I am NOT saying that autistic kids can’t have regular temper tantrums. We can. Learn the difference. Will make a WORLD of difference in your kid’s life.)
I know this is kind of all over the place, but I hope it brings some understanding to you why so many of us actually autistic people balk at functioning labels. They only tell you one thing about a person, and that one thing? Ultimately, not really that helpful for anyone.
All you’re truly doing is making assumptions about my intelligence (or lack thereof) and what kind of support I need/deserve.
Again, please check out my Resources page to more blogs by autistic people who have said it better than I can. But I hope you got something out of this.