Reframing Autistic Labels: Beyond Severity and Functioning
It all begins with an idea.
Ah. Social media. The dumpster-fire of our lives. Where the discourse around who’s is really autistic or ADHD is raging out of control:
“Oh, you think you have autism, do ya? Well, you’re not severe enough to have autism! A friend of mine has a coworker with a child who is profoundly autistic. They’re so low functioning they can’t even talk! That’s what autism REALLY is. You just want attention. You faker.”
Honestly, I’ve had an issue with the labels we use to talk about all the different needs neurodivergents face. This is particularly evident in autistic discourse and has gotten even more heated over the years. As more and more late-diagnosed, adult advocates show up online, more and more people start to debate gatekeep the term AUTISM and who really has the “right” to that term.
“Is it for seemingly “low support needs” people? Should it only be for the “severe-to-profound” autistics? Are late-diagnosed autistics burying the voices of “higher support needs” autistics? What about the non-speakers? Do the same advocacy messages still apply to them? ”
One of the core issues here, as I see it, is in how we categorize and label the incredibly diverse spectrum of neurodivergents — and how incorrect labels can all too easily derail discussions about societal barriers . I think I might have come up with a solution to help.
You might have heard terms like "high-functioning" or "low-functioning" used a lot. These are NOT preferred labels. They can be pretty dehumanizing. Imagine being told you’re "low-functioning” as a human – not a great feeling, right? And as a speech-language pathologist in the schools, all too often I would hear staff talking about how “low” a student was when what they were really saying was the student was non-speaking.
The reason for this disability stigma and is something called the “spread effect” — where people assume one aspect of a person’s disability impacts the whole person. It is biased on dangerously discriminatory and blatantly erroneous assumptions.
So, instead of relying on these labels, the current best-practice is to focus on the type of support the neurodivergent needs. I think this is great when we’re talking about individuals! It’s super important for education teams and service providers to know if someone needs physical supports for ambulation or if they have a cochlear implant for hearing, etc.
But here's the thing – a lot of people have adopted this to talk about the amount of support groups of neurodivergents need. And I’ll give you one guess as to who someone’s talking about when they say “high support needs.”
Yup. Non-speakers again. Same stigma. Same bias. Same dehumanization. Ugh.
As I see it, the issue is we’re trying to apply terms intended to indicate individualized care to groups of people and the barriers to support that they face. And when you’re talking about a HUGE spectrum of highly diverse people, individualized terms will never apply well to a large group. However, for the sake of advocacy for systemic change and even for research into best practices, categorization by groups does matter.
So, here’s my proposal: Let's shift the conversation to focus on the social barriers that neurodivergents face. To do this, I think it comes down to two main categories based on disability type: apparent or non-apparent disabilities.
NOTE: It's important to remember that these categories aren't set in stone. They can change depending on all sorts of factors like age, different environments (noisy vs quiet), and health status changes.
Apparent neurodivergents have one or more “obvious” disabilities.
They might have muscle impairments, significant sensory needs, selective mutism, co-morbid severe-to-profound hearing loss, etc. People know they’re disabled from looking or hearing them, and so they’re immediately treated differently. Due to this, they’re not really given the option to mask socially — they’re just stigmatized immediately: Socially isolated from their peers, denied access to supports (i.e., not presumed competent), and have overtly costly medical support needs that aren’t always met by the system. Additionally, their parents/guardians/family caregivers are grossly under supported and are in desperate need of: More time off from caregiving duties to actually enjoy their time with their family member, waaayyyyy more access to free mental health support and more ethical answers to “what happens to them if I’m not around?”
Non-apparent neurodivergents do not have “obvious” disabilities.
Most late-diagnosed adults fit into this category as children — with the exception of BIPOC and women who are often misdiagnosed or just missed altogether. They could have significant mental health issues, learning disabilities, auditory processing issues, etc., but not any obvious visual and/or auditory “tell.” When other people meet them, they think “this person is like me.” Due to that, they are initially accepted by friends, teachers, etc., but then experience social rejection and isolation. This results in them learning to mask their differences to try to be safe from rejection. However, masking doesn’t usually work perfectly, so they still experience bullying/teasing from both peers and adults and they have their disability denied over and over, usually with the accompanying shame of “you’re just lazy” or “you’re too sensitive.”
Ultimately, let's stop focusing on what we think people can't do and start focusing on what the system needs to do.
