Monday 25 September 2017

About those 'low-functioning' autistics...


In my last post, I talked about the myth of the ‘high functioning’ autistic. Now I’d like to examine the issue of the supposedly ‘low functioning’ autistics.

Functioning levels are not something intrinsic to the autistic individual, but rather an indication of ‘how well this autistic person can pass for NT’, i.e. ‘normal’. The things that are likely to get an autistic judged as ‘low functioning’ include the following –

-They can’t communicate orally. (This, above all.)

-They’re not toilet trained at an age when most NT kids are.

- They seem - and I stress seem - ‘unresponsive’ to other people.

-They stim a lot, noisily, or at times and in places deemed ‘inappropriate’. 

-They have a lot of meltdowns.

-They fail IQ tests. (More on this below.)

There is an assumption that there’s a clear dividing between ‘high’ (HF) and ‘low’ functioning (LF) autistics – ie that we think/react differently or even that the LF don’t think at all. It’s especially assumed that if an autistic isn’t speaking orally, that means they have nothing to say, that their intelligence is minimal, and their potential almost non-existent. Their abilities and strengths get ignored, and if they express anger with their situation, it’s presumed to be just meaningless rage, somehow intrinsic to their autism.

Try to challenge how ANY autistics are treated, and you’ll bump up against these assumptions. You’ll probably be told that you “don’t understand” that “these people” have a lot of “problems”, and hence, in their minds, that it’s okay to do anything which might make them ‘pass for normal’. LF, in too many people’s minds, means ‘worthless’ or even ‘sub-human’, and so all sorts of horrible ‘treatments’ of ‘these people’ are justified. There’s a serious human rights abuse issue right there. Not to mention that this actually puts ALL autistics at risk, because at any point in our lives, any autistic can be deemed ‘in need’ of these treatments[i]

Yes, some autistics can and do have difficulties with things like knowing when they need to go to the toilet, or understanding what is being said to them because of auditory processing issues, or co-ordinating their limbs well. Well guess what, many so-called HF types have these difficulties too. Our abilities vary a great deal from one autistic to another, and an autistic can be ‘high functioning’ in some areas, but totally ‘low functioning’ in others.

This is backed up by how, whenever I read the words of non-speaking, ie supposedly ‘low-functioning’ autistics, I find that what they say isn’t radically different from my own internal experiences. The difference is one of degree, more than kind, and trying to define us by arbitrary levels sets up a false division. The only real difference is that I can (usually) communicate orally.

So when I see a supposedly ‘low-functioning’ autistic, I see something different to what most NTs see, because I’m looking at them through autistic eyes.

When others see an autistic ‘inappropriately’ stimming, I see an autistic trying to self-soothe, or one who needs to express their delight with something, eg a food treat, or seeing a favourite person.

When others see an autistic having ‘constant’ and ’inexplicable’ meltdowns, I see an autistic driven beyond endurance by sensory overload, communication challenges, auditory confusion, or similar.

When others see a ‘violent’ autistic, I see an autistic wild with frustration at their inability to communicate, or how no-one will listen when they do try to, or at how people treat them as though they’re stupid or unable to hear or feel, or who put them through trauma-inducing therapies like ABA.

When others see an ‘infantile’ faecal-smearing autistic, I see an autistic who is deeply sensory-seeking – or perhaps one who has learnt that this is how you make people actually notice you, even if it’s only to scold.

When others see an ‘unloving’ autistic who screams if touched and rejects hugs, I see someone with painfully sensitive skin, but who nonetheless is capable of love and affection, in their own way.

When others see an autistic who scores very low on an IQ test, I see one who was probably overwhelmed by an unfamiliar situation and people, or one who has auditory processing difficulties that get in the way, or who has severe problems with co-ordination, leading the testers to think “they don’t know what an ‘x’ is”, when in fact they do know, but can’t get their hands to point to the right picture.

When others see an autistic who ‘perseverates’, or who has a meltdown if dragged away from their favourite thing, I see an autistic with a special interest, who needs their favourite object or activity to keep calm, and who almost certainly hasn’t been given enough transition time, not to mention one who could, oral-speaking or not, make this into a life-enhancing hobby, or even a career.

When others see an autistic who ‘won’t let’ their family go places like out to dinner without ‘embarrassing’ meltdowns, or who ‘doesn’t appreciate the efforts’ their parents put into taking them on holiday in ‘nice places’, I see one who is never prepared for outings, who is ‘thrown in the deep end’ of strange and overwhelming experiences, and who finds crowded and unfamiliar ‘holiday spots’ sheer torture. In short, someone who isn’t trying to make their parents miserable, but one who is themselves miserable.

When I see an autistic who can’t communicate verbally, and is presumed ‘unintelligent’, I see an autistic who hasn’t yet found, or been given, the right means of communication.

I could go on, but you get the picture. And my biggest point is, that I see this NO MATTER THE AGE OF THE AUTISTIC, AND NO MATTER THEIR SUPPOSED ‘FUNCTIONING’ LEVEL.

To those who think that autism acceptance somehow doesn’t apply to LF autistics, I say this.

While all autistics are vulnerable to ill-treatment, and in desperate need of autism acceptance, I believe that LF autistics are actually the ones MOST in need of it, both for their own sakes, because they’re almost certainly the ones most at risk of abuse and mistreatments, and because if one autistic is at risk, we all are.

LF autistics desperately need those around them to stop, drop what they’re doing, and really look at them. Without judgement or pre-conceptions. They need to be accepted absolutely as they are, before those around them can really help them.

I’m not saying that there aren’t difficult parts of being autistic, I’m saying that the biggest chunk of our difficulties is caused by the lack of understanding and the right support from others – and that THIS IS TRUE FOR ALL AUTISTICS, NO MATTER THEIR ‘FUNCTIONING’ LEVEL. Instead of striving to ‘eliminate’ their autism, it’s far better if you work with it, strive to actually understand the kid, and go from there. 

So I will not let myself be artificially separated from the LF, nor abandon them to the not-so-tender mercies of those who claim to “know best” how to “handle” them. Because they’re my sisters and brothers, or the next generation of us. I’m not letting them go. I will continue to advocate for the LF when they can’t, and encourage others to listen to them/read their words when they are able to.

And I support all other autistics, and our allies, who are doing the same. We can’t afford to let anyone divide our autistic community. Because their, and our, very well-being is at stake.


[i] Also read Amanda Forest Vivian, “They Hate You. Yes, You.”, pgs. 124-127, in Loud Hands, Julia Bascom (ed), Washington DC: The Autistic Press, 2012.

3 comments:

  1. Fair enough. We just need a lot more people to hold your point of view. I can also see that some parents and others whose jobs/professions bring them in contact with autistic people will never be able to get themselves withing a million miles of this point of view. They are unable to find the very empathy within themselves that they find lacking in others, ie their autistic children or clients. We can't force them to change the way they think no matter how we try or wish it. It's frustrating.

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  2. I fully agree with this article. Terms like "functions at the level of" (insert age that does not reflect the real age of the person) do nothing but confuse people as to what autism is, and why a person may be doing what they are doing.

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  3. Your passion for the rights of Autistic people truly shines through this compassionate article.I will share your wisdom wherever i can.

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