When only autism will do.

March 10, 2017 § 25 Comments

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Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing. 

This post is about access and exclusion. 

It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.

And if you say thank you very much for all your kindness  but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.

This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody  – unless you fancy a nice slap down that is.

Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.

Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).

What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.

Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?

It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.

SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.

This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.

So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.

This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.

I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.

I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.

I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?

My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.

My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.

And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now, whatever their needs may be.

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§ 25 Responses to When only autism will do.

  • Elena Thomas says:

    Where to start… I’m sorry you were on the receiving end of the slap-down… It did seem rather sharp and unnecessary. As the so-called “normal” person (even typing such a thing gives me a rash) I too find the HF/LF labels not only insulting but actually confusing. In my experience ALL humans have areas in which they function well/ not so well/ appallingly…. So to attach such an all-encompassing label seems unuseful. Also… “Functioning” against what criteria? Decided by whom? The adage about fish being judged on their ability to ride a bicycle comes to mind… Pointless.

    Liked by 7 people

  • Rhi says:

    Well said. Thank you

    Liked by 2 people

  • VisualVox says:

    Reblogged this on Aspie Under Your Radar and commented:
    Great post!

    Like

  • alexforshaw says:

    Wonderfully written and argued. It’s so frustrating when we get dismissed. In one breath we’re “too high functioning” to represent other autistic folks; in the next we can’t possibly speak for ourselves because we are autistic and therefore not sufficiently competent. A Catch-22 in which they get us coming and going.

    I would gladly consign functioning labels to the bonfire of history. I’ll even supply the matches. Don’t ever let them silence you or stop you from speaking out. And as for “owning” the debate, we as autistic people should own it: it’s about our lives after all. Love it! xx

    Liked by 4 people

  • Thank you for writing this. And for your badassedness!

    Liked by 2 people

  • autistatwork says:

    Words matter. They can divide us, define us, frame us, trap us, and free us. Yours are words that help shape beautiful and well crafted keys for those locks. You have been so courageous in continuing to speak out. Total respect. TY xx

    Liked by 3 people

  • Thank you for this very informative post. I have had issues with “functioning age labels” (being labeled as “functioning at the level of (arbitrary age under 18)”, despite the fact that I identify as an adult who sometimes needs support. You are correct in that arbitrary “functioning levels” fluctuate based on stress. Both functioning labels, and functioning age level labels need to be permanently retired. #EndFunctioningAgeLabels

    Liked by 4 people

  • Great points there Sonia, Thanks. What to add that this system bias in advocacy does create burnout for autistics currently challenging the status quo. The Autism community of non-autistics and policy makers forget that they still put up barriers and obstacles in giving a platform for neurodivergent voices.

    Liked by 4 people

  • Debbie Harris says:

    Keeping talking Sonia! I (parent) stumbled across advocacy online. I need your admonishments! I’m listening, I’m learning, I want to keep learning. It’s helping me. I love my boy and his beautiful mind. It’s fascinating.

    Just wanted to speak up here as I’m sure the swipe downs can be so draining. Listening to the advice and personal stories of autistics (and I can not emphasise this enough) has changed our lives. It’s all so relevant and interesting verses parent led stuff which is generally a bit tragic and a drain on the senses.

    Liked by 4 people

    • soniaboue says:

      Glorious comment Debbie! TY for the support – hard to keep going sometimes as we question ourselves constantly in the face of the neurological majorities/ culture which surrounds us. This makes it all very worth while. Love to you and your beautiful boy. S xx

      Liked by 2 people

  • Elena Thomas says:

    This is a great comment… As it sort of echoes what I think… I was a teacher and in various educational settings for 25 years or more, and it has only just occurred to me that the way I was supposed to be with autistic children was in no way led or even informed by other autistic people! I have learned more in the last two years than in the previous twenty and regret not noticing while I was in amongst it that I NEEDED to learn! I know that I will get things wrong, or that what is right for one isn’t for another (naturally!) but what is most important is the communication, listening, don’t presume, and wait…. Sometimes the processing isn’t instant!

    Liked by 3 people

  • Excellent piece Sonia! It is like walking that proverbial tight rope at times when we speak up and refuse to allow ourselves to be trodden down by the non-autistic ” soft shoe shuffle’ often not so soft shoe when they admonish us for communicating our truth.

    HFA & LFA just as you say seem not to apply when referring to non-autistics so why should it be not only acceptable but almost mandatory to accept these terms as matter of fact and a necessity in identification of an autistic individual?

    HFN-A & LFN-A ?

    Even more so is the conclusions that people make about others who communicate in ways different to themselves. There are different manners in more ways than one and speaking the truth out loud in my mind is more honourable than camouflaging the truth under veils of disguised insult/ rejection/ disapproval as is the manner in N-A culture.

    Yes! I also have transgressed the social acceptability rules such as when I genuinely expressed appreciation and approval of the choice of a gift and pointed out the size prevent me from wearing it.

    No more gifts followed the disapproving glares I received from all present on the day of the gift/present.

    Warning don’t present yourself on receipt of a gift as it is unacceptable to do so.

    And never mention that the shade of the colour is unsuitable to your complexion etc as that also is taboo…..

    Unfortunately many people still assume that a person who doesn’t communicate via the spoken word and makes little eye contact is incapable of having a fertile and productive mind.

    Whilst autistics who do communicate orally and make minimal eye contact have no unseen difficulties in the magnitude that can cause Shutdowns , Meltdowns and severe physical pain.

    Liked by 3 people

  • Christine says:

    Hi Sonia
    TYSM for writing your blog. As a Grandmother with two grandchildren with autism, I’m learning more and more as time goes on. Labels just don’t help!

    Liked by 3 people

  • […] terminology was the subject of my last piece called When only autism will do, for which my favourite comment was a thank you for my badassery! This pleased me more than I can […]

    Liked by 1 person

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