High-functioning autism and why it needs to die | Unapologetically Autistic

High-functioning autism and why it needs to die

High functioning autism

High-functioning autism is another one of those irritating, annoying, and misleading labels we'd all be better off without. 

Why?

Because it's predicated on a flawed understanding of what autism is as a spectrum disorder, and ultimately makes life harder for a huge numbers of people who walk around with the label stuck to them.

First...

Autism is a spectrum not a gradient (and "mild autism" is not A Thing)

Let me explain.

The typical view of autism is like this (click to see a larger image):

high functioning autism - as a gradient

Autism as a gradient

Seems legit, right?

Well, yeah... obviously.

Although... let's consider two autistics...

High-functioning autism guy

First, we've got the high-functioning autistic business owner — he's married, got five well-adjusted grown-up kids and step-kids, and is highly regarded in his industry. He runs mastermind groups and is a veteran public speaker having no trouble getting up there in front of an audience and strutting his stuff.

And years ago he was a real-life bouncer. He learned to flirt well enough with the girls, wasn't anxious or withdrawn on the door, and when he wasn't beating up miscreants and lowlifes, he lived alone, and held down a steady, responsible daytime job as a computer programmer.

 In short, he's generally reckoned to be a productive if somewhat oddball member of society.

Yup, he's definitely got high-functioning autism. 

Man, he's so high-functioning he's almost normal, almost like a real person.

Low-functioning autism guy

He's not got things together in quite the same way. 

See him there at the airport?

Yeah, him.

He's a bit drunk because it's the only way he can cope, but even so the lights, noise, and sheer busyness of the place is getting to him. He's got to the point where he's so frazzled he can't think, can't speak, and is having a hard time processing anything anyone says to him.

Truth be told, all he wants to do is curl up in a ball and and hide away from it all. He's even wearing a special lanyard marking him out to the airport staff as having a hidden disability, indicating he needs more time to process information, and might even need assistance at times. 

It's often the same in a busy bar or gym. You'll talk to him and get a blank look because he can't follow what you're saying.

Hell, he hardly ever looks you in the eye when you're talking to him. Looks shifty, if you ask me. And if you push him too far he'll have a meltdown (it looks to the uninformed eye very much like a tantrum, but it's worlds apart).

He's also got anxiety disorder, and when it strikes he's about as much use as a chocolate teapot, because it's all he can do to keep walking or cycling, just moving to stop himself from freaking out totally.

And to cap it all, he has low affective and cognitive empathy, along with alexithymia, meaning he can't identify emotions in others or recognise and connect with them in himself (and nor does he care about this, because he's not wired up to care about them).

Whatever... seems like he's pretty low-functioning to me.

What do you reckon?

Trouble is...

... it's the same person.

It's me.

And depending on which trait you're looking at I can be "high-functioning" or "low-functioning".

Indeed, how "functioning" I am in any given trait often changes with time and circumstance.

I hope it's clear to you from this, the perception of the autism spectrum as a gradient is misleading and plainly wrong.

A more accurate view of the autism spectrum

Here's one way to represent it (click on the image to get a better look at it):

high functioning autism as a spectrum of traits

Autism as a spectrum rather than a gradient

What you've got is a bunch of categories of autistic traits running from left to right, and then you can imagine how much support the person needs in each category running from top to bottom (with low support at the bottom).

More: each category has more than one trait within it, so, for instance, Communication might look something like this:

high functioning autism - example communication traits

Example communication traits

So, let's take me as an example.

If we were to put a white mark to denote where I need support (say, help, allowances, and forbearance from friends if I'm in a social situation) for each trait within the communication category, it would look something like this:

My example communication traits

If we did this for every trait within every category, you can see how my "profile" would be unique (and this is why we say if you've met one autistic, you've met one autistic. ​It's not just some kind of politically correct feel-good homily to make us autistics feel good about ourselves — it's literally true).​​​

The notion of support is broad, by the way. It encompases everything from friends giving you more time to answer questions and them being clearer with you in their communications, to having a nurse on hand 24/7 to wipe your bum when it's needed.

For the hard of thinking

Probably ironic me saying this, but don't take the images above too literally. They're meant to be illustrative and indicative so I can make a point.

There are different ways to categorise the traits, and many more traits within the categories than I've shown.

Moreover, my own support needs in the same category and across the same traits vary with time, all depending on how tired and stressed I am, how well I know the people I'm with, my mood, and what kind of rubber chicken you waved over the black candle at our last demonic summoning.

Why "mild autism" isn't a thing

This follows immediately from autism being a spectrum and not a gradient. You can't have a mild version of a spectrum. The very concept is nonsensical (it's like talking about the thin end of a rectangle when you imagine the rectangle is really a wedge).

When people talk about mild autism, a bedfellow of high-functioning autism in many ways, what they're really talking about is people who can pretend well enough and mask their presentation to the point where on the outside they can more or less pass as neurotypical.

The problem with this is you can't possibly see what I and others like me have to do on the inside to make that outside presentation possible.

And when you describe my autism as "mild" what you're telling me is YOU experience my autism mildly (and this is why you're likely to get short-shrift from me if you do).

More to the point, if your difficulties are more pronounced in areas which are less obvious, then, by definition, they're going to be less obvious. But this in no way makes them mild.

And on top of all this there are the the diagnostic criteria themselves. There's a current fashion among the uninformed to believe psychiatrists and psychologists are handing out autism diagnoses arbitrarily like sweeties at Halloween.

As with many strongly- and sincerely-held opinions not backed up by experience or knowledge...

 ... this is untrue.

The diagnostic criteria for autism

To be diagnosed as autistic you have to experience persistent, substantial, and significant difficulties and deficits across a broad range of criteria (DSM 5 criteria are here). 

You don't just roll up to the doc's feeling a bit autistic that day and waltz out of there with a diagnosis (and it's also why people who tell me "we're all a little bit autistic" because they occasionally express one or two autistic traits are risking a throat-punch for their trouble). 

Maybe it's just me but if you're experiencing persistent, substantial, and significant difficulties and deficits across a broad range of criteria, that is in no way mild. If it does feel like a walk in the park every day, chances are you're not autistic and you've perhaps been misdiagnosed (and if you're self-diagnosed, you're deluding yourself).

Why "functional labels" suck

If the foregoing wasn't enough to show you how the high-functioning autism thing is a crock, then let's look at it from a wholly different angle.

Because even if the functional labels had some merit (which they don't, for all the reasons I've given), they're crass and inappropriate.

Imagine another couple of people, both neurotypical.

The first is Stephen Hawking, one of the foremost physicists and thinkers of all time; and a random and highly-clichéd soccer-player with more money and fame than common sense (there are loads to choose from, so take your pick).

Hawking spent the last several decades of his life in a motorised wheelchair, able to communicate only through his keyboard and voice synthesiser. Yet he was an intellectual giant and author of several popular books.

Our soccer-player, on the other hand is highly-skilled on the pitch yet runs his personal and business life into the ground with drugs and debauchery, and suffers from mental health problems...  and it all adds up to getting him Sectioned.

I have to wonder which of the two is the most "functional", don't you?

When most people use the phrase high-functioning autism, they use it as shorthand to describe someone who can pass convincingly and effectively enough as "normal" to lead an independent life.

But that's a dreadfully one-dimensional view of things. As the examples I've just given, it barely scratches the surface of how autism affects us.

More than that...

 The term high-functioning autism is itself disparaging

We don't call someone in a wheelchair "low functioning" and say they have "low functioning mobility" and compare them with others who have "high functioning mobility". 

Nor do we use the same label for people with any other developmental delays, disorders, or disabilities.

So why single autism out for special insult?

Only one reason I can see: ignorance.

An alternative to functional labels

In the DSM 5 (Diagnostic and Statistical Manual of Mental Disorders), there are three levels of autism: one, two, and three.

Most people wrongly assume these correspond to how "mild" or "severe" your autism is, but this is incorrect.

The levels actually correspond to the level of support you need.

My own diagnosis is DSM 5 - 299.00 with Level 1 support / ICD 10 Diagnostic Criteria for Research : F84.5 -  Aspergers Syndrome (yes, Asperger's is still given as a diagnosis where I am, so save me your "corrections").

And the Level 1 relates to how much support I need; my friend, on the other hand, has the same diagnosis, except he has Level 2 support.

This doesn't mean he's more severely autistic or "lower functioning" than I am — it merely means he needs more support in some areas. And I suspect that's chiefly because I have 20 more years' life experience than he does, and three or four years' of being sure I was an Aspie (it's rather more sudden for him, something coming to light in the last six months or so).

This is a far better way of categorising the extent to which autism affects your ability to live and function independently in society.

To call someone "low functioning" is not only often inaccurate and imprecise, but it's insulting, too. Not only that, but it focuses attention on your perceived deficits rather than giving you credit for any strengths (and never mind any political correctness, here — this is common human decency).

And saying someone has high-functioning autism is scarcely any better, either, because it deflects attention from where we struggle and leads to misunderstanding and frustration on both sides of the neurological divide.

Because if you have it in your head I have "high-functioning autism", you're likely to get pissed off with me when I need help and support and blame me for things I can't control, which can range from merely missing the hints you're dropping to having a full-blow meltdown in a busy mall, and everything in between.

Ultimately...

  1. There's no such thing as "mild autism". Please stop using the phrase and thinking in these terms. It helps no one, least of all us autistics.
  2. Functional labels are inaccurate, misleading, and don't help anyone. They're grounded in ignorance and at best give rise to contempt from and for those so labelled, and at worst cause real harm in diminishing and trivialising the very real struggles we have on a daily basis. High-functioning autism isn't a thing; nor is low-functioning autism. Think instead of the support we need, and, if you want to help, give us your patience and forbearance when we need it.
  3. The real struggle of autism happens on the inside, not the outside. Unless you're autistic yourself you cannot possibly know or understand how it affects us or what's required to keep things together.

It all comes down to education in the end.

And if you've read this post, consider yourself educated and don't use those dumb phrases again (and correct others when they use them).

Autistically,

Jon McCulloch, The Evil Bald Genius

Author, speaker, business owner, and autism advocate

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Jon

I'm Jon. Husband, father, business owner, author, speaker, and outspoken advocate for autism awareness. I struggled my whole life knowing I was different, but not knowing how or why. I was finally diagnosed in 2019, but had informally self-identified as autistic for a couple of years before that. I live on a remote farm in Ireland with my wife and an assortment of cats and dogs.

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