AKA I am so naïve
Ok, so I was chatting to a Mum of some several autistic children, and she says something that really made me sit up and listen. She was telling me about how people really need to understand that autism and loveliness are not mutually exclusive. I had to interrupt and ask her to explain – not about what she was saying (as it seemed so obvious to me) but why she felt she needed to say it. It turns out that a frequent occurrence is her disclosing to people that her children are autistic – and their response being “but they are so lovely” – as if the two cannot go hand in hand. This is when I started to feel utterly bewildered. Surely, surely, society at large is not still so far behind in their thinking that one cannot be both autistic and lovely? But apparently, my naïvety is shining through – seemingly at least some people do actually think that.
This got me thinking. Why is it that being autistic somehow denies a person a personality? Because so often, it does. It’s kind of like as soon as someone tells someone else they are autistic then the shutters come down and the person is no longer a ‘real’ person, but an ‘autistic’ person – as if autism is somehow a barrier to being…well, anything, really, aside from being autistic.
Let’s just clarify – I would like to say once and for all but to be fair I thought that society in general had already cottoned on and I have been proved very wrong – being autistic simply means that. It means that one is autistic. Nothing – literally nothing – else can be inferred from the declaration of “I am autistic”, “my wife is autistic” (yes, amazing isn’t it? Women can not only be autistic they can also get married! Shock. Horror. (Sarcasm)), and so on. There is essentially nothing that ties all autistic people together aside from their state of being autistic. There may be all sorts of overlaps, propensities for certain likes and dislikes, similarities, aversions – but aside from being autistic there isn’t anything else one can infer from an autism declaration. Why is this? Because autistic people – wait for it – are actual, real, people with their very own unique personalities, characteristics, idiosyncrasies, dispositions, pet hates, preferences, attributes, natures, virtues, temperaments, attributes, charms – and so on. Yes, all autistic people share being autistic; over and above that, no judgements should be made just because of the disclosure.
Imagine a world where you were judged – for whatever reason, every day, sometimes by strangers – even worse, by people who know you better (and should know better) – in a manner that bears no relation to the real you. I don’t think that would be a very pleasant way to exist. But many autistics do exist so often in this state on that daily basis – sometimes to the point of giving up telling people that they are autistic. This isn’t because they are ashamed of being autistic – far from it. It’s because they get so utterly (and justifiably) fed up with (possibly well meaning) remarks based on ill thought out presumptions that rarely have anything to do with the actual individual. Statements starting with “so that must mean you’re…” are commonplace – and should be banned! Or “so, does that mean you’re good at…” or “so does that mean you’re bad at…” are often the death knell of meaningful interaction. It’s fantastic when people genuinely want to understand the autistic person better – and I think most autistic people are pretty willing to share if approached in the right way – but society simply has to stop making utterly inappropriate suppositions just based on the word ‘autism’. Not only are the suppositions usually entirely wrong, making them in the first place is actually pretty offensive.
These reactions are real, happen almost always when I disclose… my strengths even become suspect … I became suspect… I become a cardboard cut out of a stereotype that they see I don’t quite fit so I am suspect….
How are they to relate to this “autistic person” who isn’t *exactly* like the two extreme popularised stereotypes? I am not a savant and I am not intellectually disabled… I am , however, socially disabled and more but I also have strengths, talents and insights. These aspects now also become suspect or invisible … non-existent in the non-autistic world.
Brilliantly put, thank you
The worst and most frustrating type of misconception is the one-size-fits all description I so often encounter in schools who think they know what autism “looks like”.
If the child doesn’t fit their understanding, it’s not autism it’s “bad behaviour”. Or it’s “so bad it must be mental health problems”. The only time schools seem to acknowledge autistic children have personality or free will like their peers is when they are “being naughty”, outside of that they have no right to a personality. The same schools that think a badly written social story is the holy grail and gold standard of inclusion. Sometimes I worry I’m cynical, but actually I think it’s the reality of being at the coal face. We might have “awareness” of autism nailed but I still believe we are a long way off acceptance and true understanding that beneath the autistic label; there is vast potential and much to be celebrated if stereotypes can be overlooked.
Thank you Stephanie, some excellent observations here!
What you say is very true, but there’s a different angle to this I am struggling with at the moment. I know enough and I’ve read enough to realise that automatic assumptions on hearing someone is autistic can be entirely misleading, and that there is no single presentation of autism. Strangely, though, I fall into that trap when I’m trying to figure out whether I’m on the spectrum or not, which I’m currently occupied with. I tend to think probably rather “yes” than “no”, but every time I read something about autism that I don’t do, that I never did and that I don’t experience at all, I start to think “oh, if that doesn’t apply to me, I can’t be autistic”, even though much of the picture fits. I do realise that this is a thought-trap and another way of stereotyping, but it’s still not easy to wriggle your way out of it!
Ah – the old ‘Temple Grandin understands cows but they mystify me so I can’t be autistic’ problem – happens a lot I can assure you!
I believe the whole field of autism is rife with misconceptions and wrong data. I am a mother of an autistic son and recently diagnosed myself. I happen to have been very successful in my career because of the strengths of intense focus on a few or one thing at a time. When i tell people I am autistic the reply I get is “really, you don’t seem to be”. I experience a complete lack of appreciation that autistic people all have their own personalities and people expect us all to somehow be one kind. Having worked in very specialised areas I believe a large amount of the people I have worked with over the years are autistic. Because they are successful they don’t get diagnosed. The undiagnosed autistic population is much bigger than the diagnosed one, I believe, which in effect means that all ideas of what autistic people are and the statistics around that are very misleading.
If we could get more successful and functioning autistic people to come forward then maybe the misconceptions will slowly change.
That’s an excellent observation ‘re successes, thought provoking, but equally at the non successful end life/work there are others who have fell through the diagnostic gap.. labelled as failures social misfits, or even as strange ones, I work in the NHS and the amount of people who come through the ED door who so much present in many ways as Auts but who life & a social world has ravaged them and as a consequence has wrecked their health an life is depressingly clear, isolation difference, an no support or understanding has led them to self Medicare to cope and addiction and its medical consequences are the results, but then aome are just labelled alcoholic, addict or suicdial instead…
I experince that when explaining my kids autism to others… they say “Ahhh really” in a pitying isn’t it a shame tone! I often then have to explain clearly but diplomatically that
their tone is uncalled for that though they have some difficulties within it, their autism is mostly a problem
Society has with differences an that’s where their main problems lie… I have to reinforce that they are lovely capable autistic kids/adults struggling mostly as a consequence
Of societies restrictive narrow view of what’s acceptable.
There’s another one. In the past, I’ve been told by people who know me (and who thus should know better), “You’re very intelligent for an autistic person,” as though autism and average intelligence are mutually exclusive. Any wonder my provisional identification (‘identification’ being what I prefer to call ‘diagnosis’) was completely ignored from when I was given it in 1988 at the age of seven?