Autistic Functioning Labels and the Silencing of Autistics
There’s this bizarre assumption about the #ActuallyAutistic that “functioning levels” are:
1. A characteristic of the autism.
2. Fixed. Immutable.
3. Something you can gauge from superficial details on twitter.
4. Something that prevents commentary.
Buckle in, let’s talk about these.
A Characteristic of the Autism
First, to address (1), there is no such thing as "High Functioning Autism" or "Low Functioning Autism." These terms literally come out of the attempts to define us into the groups "almost human" and "not human." They have no place in modern discussions
None. Zip. Zero. Drop them from your vocabulary. There’s some people running around with legacy diagnosis and that’s a separate conversation, but for the purposes of modern discourse:
- There’s no such thing as “severely autistic.”
- There’s no such thing as HFA or LFA.
Now that having been said, what we do have are concepts around support levels required and there is something called the Global Assessment of Functioning along with the WHO Disability Assessment Schedule. But these have virtually nothing to do with autism.
There is also a concept of “severity” in the DSM, but when we look at what that means it is pretty clear: The intent is based on support levels required and how the autistic person interfaces with society. Those at Severity Level 3 are those “requiring very substantial support” while those at Severity Level 1 are “requiring support.”
Much like with the WHODAS assessment, however, this is mutable over time and has more to do with society than it does the autistic individual.
Support levels are defined as, essentially, “how much support do you need for your conditions.” The older GAF or modern WHODAS 2.0 look at the whole picture of someone’s life along multiple axes. They aren’t autism-specific; there’s no “high” or “low.”
This brings us to point (2). These items in a GAF or WHODAS 2.0 assessment are mutable and context dependent. They can change over time. They change with access to technology. They change with the cultural context around disability. Particularly in the case of WHODAS and GAF they certainly change between childhood and adulthood. For the DSM V Severity Levels the type and nature of the support will change, as well potentially the absolute support level required.
This is one reason it is particularly infuriating when people say “YOU AREN’T AS LOW FUNCTIONING AS THIS #ActuallyAutistic CHILD.” Well, no. I’m an adult. I’ve had 30+ years on that child to figure out things like how to navigate social spaces, experience with tech, etc.
Guess what is going to happen to that #ActuallyAutistic kid in 30+ years?
They are going to be an #ActuallyAutistic adult too! Kind of how that works. #ActuallyAutistic doesn’t mean “incapable of growing up” a la Peter Pan. It doesn’t mean “incapable of learning and adapting.”
As the #ActuallyAutistic kid grows they are going to start to gain some mastery of the tools that allow them to communicate. This includes assistive devices (from AACs to simply typing on computers). This also includes language and social skills.
Doesn’t render them “HFA.”
Yes, I am more functional than a 7 year old. Particularly than me at 7.
I hope that you, dear #allistic adult, are more “functional” than _you_ were at 7 (or 12, or 17) years old.
We don’t call you “high functioning” now and “low functioning” when you were 7. We call you a kid
Further, the fact that I have friends doesn’t imply that I don’t have difficulty creating and maintaining friendships.
Especially compared to a neurotypical or allistic baseline, especially with allistics.
I have learned, however. I’m an adult. These things happen.
Then There’s Twitter
This brings us to our next point, (3). Twitter.
I have no idea where this idea came from that the ability to speak coherently on an asynchronous medium with limited character counts has anything whatsoever to do with functioning levels, but here we are.
This idea has come up that people being able to communicate on twitter means they are “high functioning.”
That associations made on twitter mean no difficulty with in-person associations.
Not even slightly.
You can’t infer these details from twitter, stop trying.
Typing and speaking in complete sentences through an asynchronous medium is not a dramatically high bar for communication compared to even standard workplace interactions.
There are also different forms of autism that see eye-to-eye (so to speak), but which interface with the world _very_ differently and thus suffer different levels of disability.
You never see, for example, how I keep a room when I’m not living with allistics who are better at this sort of thing.
You never see my personal hygiene levels or how those have changed over time as I have gotten more skilled in that regard.
You see none of that. Even in person.
Something that Prevents Commentary
So finally, let’s get to (4).
This bizarre notion that simply because I am so-called “high functioning” that I don’t “understand” the “plight” of some “low functioning” individual.
If I don’t, then you as a “high functioning allistic” most certainly don’t. But beyond that…
I do have my own experiences with various people who have treated me very close to how you are talking about your relative/friend/whatever.
I know how I responded to such as an #ActuallyAutistic person. I also know some commonalities of the #ActuallyAutistic experience.
I don’t claim to speak for them. They can speak for themselves. I can, however, look at a situation and say “this is what it looks like from an #ActuallyAutistic perspective.” Or, in some cases, “you are violating their privacy,” which has nothing to do with autism.
See, in most of the cases I’ve seen this dialogue, it goes like this:
Autistic: “Did you gain informed consent from your kid?”
Adult: “Of course not.”
Autistic: “That is bad and you should feel bad.”
Adult: “YOU ARE HIGH FUNCTIONING HOW CAN YOU KNOW WHAT THEY WANT.”
Informed consent with children is a sticky issue, but it really has very little to do with their autism.
We saw this pattern of behavior about medical power of attorney for sterilization purposes of someone over 18.
At which point, it’s just wrong. Autism doesn’t really enter.
In general: I trust other #ActuallyAutistic people to know what my experience is like more than I trust most #allistics. Many #ActuallyAutistic people feel similarly, but in general:
You should still probably listen to our perspective, even if you disagree.
We are not a monolith, but we do have some commonalities and we are often marginalized or shut out.
This just demonstrates: Allistics trust each other about autistic experiences, not the #ActuallyAutistic. Something virtually every autistic person already knows.
We are not allowed to be the authority on our own experiences. Allistic people are.
We are not allowed to speak for our own community. Allistic people are.
When we bring this up, we are told that the things allistic people write are for allistic people and not for us. We are cut out of the dialogue about our very lives.
Perhaps that indicates something you, dear #allistics, should address before talking about “functioning” of strangers.
- Functioning Labels, Again
- Problems with Functioning Labels
- Why I Believe ‘To Siri With Love’ By Judith Newman Is A Book That Does Incredible Damage To The Autistic Community
- An Open Letter to HarperCollins about To Siri, With Love
- Thinking Of Us All — Disability Day of Mourning
- Nothing About Us Without ALL of Us. That Means Autistics of Colour, Too
This article started life as a thread on thread on twitter, starting here: