Mild and severe autism – my theory

I mentioned in a previous post that I regard the distinction between “mild” and “severe” autism as something of a fallacy, and I promised to say more about it. I will do so now.

I am not alone in saying that this distinction is false. It always comes up in the “you are not like my child” discussions, but not only there, it is pretty much everywhere. Following from the “mild-severe” fallacy are the twin spectrum-related fallacies:

one, that the spectrum runs linearly from very mild to very severe autism.

and two, the related notion of a linear spectrum that runs from “normal” via “some autistic traits” to “mild autism” to “severe autism”.

Both of these are very seductive visualisations, but they are wrong. The spectrum isn’t linear. I’ve said this before. My favourite image of it is a rainbow-coloured sphere. You can also see it as a galaxy. Or even a sundae bar, where everyone gets an individual selection of autism toppings. (Not my idea, you can find it on the interwebs.) They all work. And no, the spectrum is not a single track from “not autistic” at all to “a lot autistic”, which implies that there is a point somewhere where neurotypicality shades into autism. But it is not one single track. Neurotypicality and autism are two tracks running in parallel, and you are either on one or on the other. You are either autistic or you’re not. You can’t be “a little bit autistic” (another favourite out there).

(Yes, I say that, even though I still fret that I’m “not autistic enough”, which contradicts what I’ve just said. But I’m only human and not always rational.)

But, you will say, what about the differences between autistic people? What about the one person who has a good career, a family, travels, goes to conferences and parties, and does not stand out as particularly different unless one looks closely? And on the other hand the person who finds it difficult to communicate (by whatever means), who needs assistance with the tasks of daily living, and whose behaviour immediately stands out as unusual? Surely the one person has only very mild autism, whereas the other has, you know, the hard kind?

Well, I would still say that both these people are autistic, and, at the core, that’s it. But I can also see how the impression of “mild” and “severe” can come about, because there is no denying the differences between all kinds of autistic people. So, how does it come about?

Like Anne Elk, I have a theory. And no – sorry, animal lovers – it could not be bunnies.*

My theory is linked to my other main theory of what autism is – hyperconnectivity. I have described in a previous post how so much goes on in the autistic brain all at once. It is the same phenomenon which Chris Packham in his excellent documentary describes as “cascading thoughts”. Rhi talks of a thunderstorm in the brain. This last image is the one I’m going to take up and run with. (Btw, she also has a good post on mild autism, go check it out.)

You see, what happens is that the autistic brain is constantly buffeted by strong winds. These are stimuli reaching it from the outside (light, sounds, etc.) but also stimuli arising from the inside (memories, emotions etc.)These are like sudden gusts of wind, hitting the autistic brain from all directions, very strong, high winds. It’s constantly stormy weather in the autistic brain. This, to me – I’ve said it before and I’ll say it again – is the defining, fundamental feature of autism.

Now, some of these autistic brains are more wind-resistant than others. Some are able to withstand the buffeting better than others. Some are able to go against the gusts of wind and are not blown off course. It takes effort, sure, and you can’t always do it. People are also able to build up more wind-resistance over time. For some brains, the winds are just too strong, and they keep being buffeted here and there. And that is what produces the impression of “severe” autism: it’s when someone just doesn’t have the wherewithal to keep up the neurotypical façade because the storm in their brains tumbles them about and about, and they just have to go with it. You could say now: “Well, you haven’t really said anything different. More wind-resistance equals mild autism, whereas less equals severe autism, and we are back where we started.”

Not quite. What I’m trying to say is that it is stormy in any kind of autistic brain. It’s not that you have a stiff breeze in one brain and a hurricane in another. That is where the commonality is. If you talk of mild and severe, you imply different strengths of wind, but what I’m saying is that there are different ways of coping with the same wind. My own brain has managed to build itself some sort of shelter, a sea wall against the battering waves. Most of the time the storm goes on somewhere in the background, but I’m not blown off course by it. The storm has been contained. But that doesn’t mean it’s not there, or that it doesn’t blow very hard in my brain. There is a qualitative difference between saying it blows only mildly and saying someone has more resistance. I hope I’ve been able to make this clear, otherwise I’ll catch myself in a spiral of overexplanation, which usually doesn’t help things.

So, yeah, I don’t like this “mild” and “severe” distinction. You can have a mild cold. You can eat a mild curry (mmh, chicken korma…). You can have a mild or severe headache. But used in conjunction with autism, the wording risks creating a hierarchy. If you are only mildly affected, you are one of the lucky ones and can lead an almost normal life. If you are severe, you will never be able to lead a normal life and by contrast be a burden on your family. That is the kind of resonance “mild” and “severe” has, even if these thoughts are not expressed explicitly.

Also, “mild” autism is too close to “a bit autistic” for my taste. Instead of repeating what I said above about that, let me borrow a quote from a book I read recently (Finding Asperger Syndrome in the Family, by Clare Lawrence):

Just as you cannot be ‘a little bit pregnant’, so you cannot be ‘a little bit autistic’. The term autism describes a neuro-developmental difference – a difference in the way the brain has developed – and that difference is fact. However, there is most certainly a huge variation in the manifestation of autism.

But even if we eschew this particular wording, the difference between kinds of autism remains. It cannot be denied that some manifestations of it make it much more difficult for people to cope with the world. And we need a means to talk about these differences. I don’t mean to sweep them under the carpet. “Mild” and “severe” serves as a convenient shorthand, so if we don’t want to use those any more, what would I suggest instead?

To be honest, I haven’t really been able to come up with a replacement for “mild”. Anything we could think of has to steer clear of the territory of functioning labels. Perhaps we should just stick with “autistic” and go into more detail if necessary or appropriate?

As for the “severe” kind, I suggest taking a leaf out of Shannon Des Roches Rosa’s book. When she talks about her son (which she often does, for example in a number of places on http://www.thinkingautismguide.com/), she talks about “intense autism”, which chimes with the stormy conditions I have described above. She also says “high-octane autism”, which I like. She also says her son has “high support needs”, which is a lot more precise and descriptive but at the same time more non-judgmental than saying “severe”. Of course, you can take the same approach as above, just say “autistic” and supply more details on request.

Lastly, I should say that my theory is not all-encompassing, and that other factors contribute to the “mild” and “severe” appearance of autism. (I should really emphasise the word appearance here, because this is what it’s really about – how it appears to the outside world.) I still like to think that at least I’ve hit on a partial explanation though.

I hope that the vocabulary around the subject of autism is going to change over time. It’s started to, but at the moment even sensible, well-meaning people use words that grate or even hurt. You can’t blame them for it, they use what they hear everywhere else, but I hope that with time a more sensitive, fitting vocabulary is going to take over. Because words matter.

 

*Buffy The Vampire Slayer reference. Sorry, I’m really loving my pop culture references today.

 

Image: some blue and pink flowers. No particular significance, just a pretty picture.