Since I’ve been blogging for over a year now, I thought it was time I laid out my position on the various autism-related words I’ve been using. This is also partly in reaction to a post on the Liberty of Thinking blog, and this post on Autism and Expectations, but also in general to all the other posts out there that deal with the language surrounding autism.
You might have noticed that I have employed the terms autism/autistic and Asperger’s interchangeably. That is mainly because they would all apply to me. If I had a diagnosis, it would almost certainly be Asperger’s, or Autism (Asperger’s type) or however the medical authorities in the country where I reside would term it (depending on whether they apply the DSM-V or not). It is also because I don’t want to drive a wedge between the two.
In the aforementioned post on Liberty of Thinking, the author bemoans the loss of Asperger’s Syndrome as a separate diagnostic category because, he argues, with the application of a “one size fits all” diagnostic umbrella of “Autism Spectrum Disorder”, the differences between Asperger’s and “classic autism” are blurred or ignored, and this hinders the establishment of support programmes and tools specifically tailored for that particular type of autism.
Let me quote a paragraph from the post here:
Because regardless of how emotionally stabilising may be to have adult, male and female, HF Autistics and Asperger’s individuals considered together for our rights to exist as we are, the uniqueness of each of us is so important, that this arbitrary “one umbrella fits all” approach becomes discriminatory in itself.
Simply because from my perspective, the developmental aftermath of a language delay (and oftentimes subsequent learning disabilities) is absolutely different from that of a no language delay (and the oftentimes present special learning difficulties), further “complicated” by the bio-psychological specifics of males and females.
Now, I do agree with his points to a certain extent. It also became apparent in the comments from people who are affected by this that with the disappearance of Asperger’s as a separate category the services specifically for people with Asperger’s can disappear as well. Since autism is now all one, it appears (to the service providers) to be enough to provide services for one type of autism (probably the more “severe” type) and think they are thereby doing their duty. That is a problem, and I can see that very well. By the way, I have heard the reverse argument as well, i.e. when resources are limited, those services for people with the kind of autisms that needs more help and support fall off the back, because help for Aspies is less resource-intensive.
It is also true that there are different types of autism, which can be grouped into rough subcategories. Without denying any of this, I do have a different perspective. One of the big penny-drops in my autism discovery journey (actually, silver-dollar-drop is nearer the mark) was the realisation that at the core, all autistic people are the same. Okay, they are not the same, I don’t mean that. What I mean is that if you dig down to the very very fundamental core, the seed from which the whole autism tree springs, you will find the same thing. I was thinking, how can it possibly be that someone like me, who functions so well in the neurotypical world that she didn’t realise she was something else for the longest time, and someone who can’t cope with the neurotypical world at all, can both be called autistic? But we can, and the reason is that the fundamental processes that make us both autistic are the same. It’s only in the result, how they are expressed in the individual, that the differences appear. In biology there are phaenotypes – individuals of the same species which appear differently, perhaps with a different colouring. Perhaps we should talk about phaenotypes of autism? Anyway, it was such a big thing for me to discover the commonalities, the unity of all autistic people that it was more important to me to emphasise this over the differences, without wanting to deny the existence of these differences.
I like to talk about how I see the autistic spectrum not as a linear ribbon, but as a sphere. Each autistic person inhabits a particular spot on that sphere. Asperger’s, for me, denotes one area on this spectrum, like a continent on the globe. All autistic people live somewhere on this Autism Planet (the commonality), but they inhabit different continents and countries (the differences).
All this was a roundabout way of justifying my use of autism and Asperger’s on this blog. I know of bloggers for whom the unity of all autistics is so important that they have vowed to purge the term Asperger’s from their blogs. I think what they are afraid of is the construction of a hierarchy of different types of autism, and of Aspie Privilege. That is too much to go into here in this post, though, I just wanted to mention it. To illustrate, here’s a quick quote from the other post I mentioned above:
I am Aspie. For some reason I’ve taken against using Asperger’s to describe myself, even though it’s accurate, I think for some reason it feels euphemistic.
I don’t like euphemisms.
I don’t want a sanitised, socially acceptable me anymore. I want to be the me that I am. The me that I have always been.
I use Asperger’s because I like the word. I also use Aspie, because I like that word, too. I like calling myself an Aspie, it makes me feel like a pixie. Yes, I’m aware of the dangers of the cutification of Aspergirls, but come on – I’m 45 and distinctly average looking, can you begrudge me wanting to feel like a pixie now and then? Besides “Aspie” has got the word “asp” in it – not so cute now, hey?
I don’t actually like the word Aspergirls. Nothing wrong with it, just a personal dislike. Perhaps because it’s too close to Aspergillus, a fungus which can cause problems for people with a weakened immune system. Having said that, I just googled it, and oh my, how beautiful is that? Mould seen close up can be breathtakingly beautiful, like a fairytale forest. I once saw a whole TV programme on mould where they showed some amazing views of it.
Anway, back from that tangent. I don’t like the words Aspiengirl or Aspienwoman either. No reason, just don’t. Or “Aspergian”. Don’t like that either. If you do, feel free to use those words, I won’t judge you for it, this are just irrational dislikes of mine, based on goodness knows what associations they spark in my brain. I can’t even put my finger on them.
The bulk of this post was written before the latest hoo-hah about “Asperger was a far worse Nazi than we had previously supposed” erupted in various places on the internet. In the wake of this, many people, who had hitherto stuck to the Asperger’s identity, now jettisoned the word in favour of autism only. I don’t. I will continue to use it about myself, because that is the identity I can most identify with. I think “Asperger’s” and even more “Aspie” are terms which are now so far removed from the life of the man, that I think it is entirely legitimate to use them. For me, Aspie is the word that expresses best what I am, it’s the identity that means the most to me and that I feel most comfortable with. It’s the best fit. I don’t really want to get into this discussion at all. Instead let me direct you to this this exchange between Steve Silberman and Maxfield Sparrow, which is the most sensible thing I’ve read about this. Be sure to read the whole thing, because towards the end Maxfield Sparrow has some wise words to say about the Asperger’s vs. Autistic thing.
Having dealt with those dislikes, this brings me to the nonsense of functioning labels. High-functioning or low functioning – what does that even mean? “Doctor, doctor, my autism isn’t functioning properly!” I can see the temptation of using them, to clarify your position, to narrow down your spot on the autism spectrum, but they have the pernicious side effect of creating a hierarchy. Because obviously “high” is always better than “low” – except when it comes to cholesterol – so if you’ve been labelled high functioning, you can look down at all those low functioning Morlocks. Functioning has something technological about it as well. If you are high-functioning, you work frictionless like a well-oiled bit of machinery. If you are low-functioning you are obviously defective. It is really only about how neurotypical-seeming you are. The better you can pretend, the more high-functioning you are.
Then there is of course “mild” and “severe” autism. This is kind of similar to high- and low-functioning. I will save the discussion of mild and severe for a separate post, because this is already very long, and I have quite a bit to say about it. Also, I have a theory about how “mild” and “severe” come about, so stay tuned for that.
The last thing I need to mention is person first vs. identity first. Much has already been said about this, so I don’t want to add much more to it. For myself, I prefer identity first. I am led to believe that most autistic people do. If you don’t, fair enough. I think everybody has to decide for themselves how they want to be identified, and if for you that is “person with autism”, I respect that choice. What I don’t respect is outsiders telling anyone how they have to identify themselves. Well-meaning busybodies on Twitter, who tell parents off for calling their child autistic (as I witnessed a while ago). “You’re labelling them!” goes the cry, where labelling is of course a thoroughly bad thing. But labels can be useful: if you label things, at least everybody knows what you are talking about. Why hasn’t anybody noticed that “with autism” is just as much of a label as “autistic”? “But you don’t want yourself/your child to be reduced to a label!” is the further argument. No, of course not. But you know what? “With autism” isn’t going to change anything. People who are inclined to see only the negative stereotypes won’t have their minds changed by the addition of “with”. All they hear is the “aut” word and take their cues from there.
Person-first language also opens the gate to more dangerous attitudes to autism. Not automatically, and not everyone who uses person-first language goes down that path, that’s not what I’m trying to say. But it contains a seed which could potentially sprout into something more pernicious, particularly where parents of autistic children are concerned. If you say “with autism”, you make it sound as if the autism is something extraneous to the person as such. It’s as if first there is “the person”, and then autism is added on top of that. This could under circumstances lead to the thought that if only you could remove the autism, you could discover a “normal” person underneath. I think you all know what dangerous and damaging methods are used by some parents to “purge” the autism from their children, so I won’t go into this any further.
No, person-first language does not automatically lead to such consequences. Most of the time, it’s just words. But the possibility of such an attitude is inherent in that choice of words, whereas identity-first language precludes such thinking from the outset.
So there you have it, my considered opinion about words and language around autism. It’s a rather long post, but then words are kind of my thing.
Image: Portrait of Samuel Johnson, by Joshua Reynolds. Johnson is still famous today for his dictionary.