Giving is getting: the social ‘cure’ for autism (the power dynamics exposed).

October 12, 2018 § 16 Comments

Sonia Boué, artist performance image.

Sonia Boué – process image for a forthcoming performance piece.

I acknowledge my privilege – I am enabled to give in my art practice. How many autistics are excluded? Process image for a forthcoming performance piece. 

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Giving is getting.

Yes – I’m talking power dynamics and socially embedded disadvantage.

My thoughts flow from a series of encounters.  Most notably a comment about ‘functional’ language in autism. Neuro-normative culture misinterprets autistic expression.  It tends to frame what is considered  ‘functional’ through the lens of its own (culturally dominant) social orientation.

Dominant cultures tend to make pathology of what they perceive as ‘other’. For example, not recognising language acquisition on its own (collecting and repeating words) as functional because it seems to serve no obvious ‘social’ purpose.

Neuro-normative hegemony has it that a child of a certain age ‘should’ talk about their day, their friends, and so on.  Within this framework of understanding, building a vocabulary relating to a ‘special interest’ would probably not be considered  ‘functional’ even if it is a shared (and joyful) activity (ie between parent and child).

To the neurodivergent eye (and heart) these interactions (based on repetition) can appear intensely social. They form the back and forth of call and response. Word acquisition can be a joy in itself, which can be shared to the point of deep bonding. It’s all a case of tuning in.

But neuro-normatism (if I may call it such) doesn’t meet autistics even quarter way, and there’s a deep lack of welcome for ‘otherness’ which kicks in early.

Thinking about autism as a culture (rather than a medical diagnosis) strips back the skewed deficit models that neuro-normatism imposes on us.  It breaks my heart to think that what so many neurodivergent children experience is – simply put – a lack of welcome. All because our ‘receiving culture’ (neuro-normatism) fails recognise us as a minority culture.

But, we are far greater in number than anyone knows. I knew this the day I began to recognise my own autism because I had been party to a major historical blunder about what autism is. Figures vary greatly depending on the source, but daily ‘ordinary’ citizens are discovering their autism. This trend will continue as more of us gain access to the right kind of information.  We’ve been mislead on autism since the term was coined by Leo Kanner in 1943 to describe only the most visible members of our tribe.

A welcome – in cultural terms – is going to be increasingly important as our numbers grow.

We are many, but – even if we were not so great in number – the failure of welcome is a gross social injustice to us.

Big money can invest in gene detection and ‘cure’ (anti-welcome) but advances in thinking and understanding of autism will ultimately outstrip this kind of project, I believe. Nothing convinces me that autism (as a biologically driven social orientation) can or should be cured. To be clear, I’m not talking about co-morbid conditions, I’m talking about the core features of autism.

I know some who feel cursed by autism (due to societal cruelty) and want a ‘cure’. I respect this and mourn the lack of anything near genuine welcome in their lives, which is I believe the root cause of this negative self image. We practice a ghastly death to difference in the post-modern world with the deficit model of autism, and it’s a cause for profound grief.

But stripped back and laid bare – borrowing the language of ‘cure’ momentarily – the ‘cure’ lies in the social realm. The remedy is social progress. The ‘cure’ is welcome (genuine welcome that is), and this has everything to do with giving and getting.

You can’t welcome what you don’t perceive. A culturally dominant misinterpretation of autistic focus and communication creates a feedback loop of rejection.

There follows a process. When your natural and joyful communication is stigmatised you are barred from giving (unless you learn to conform). Those of us who learn to adapt do so at immense cost (which is unsustainable), those who can’t are quickly marginalised.

But wait, what am I doing talking about giving? Surely I should be focusing on what autistics need to be given by others?

And here we are. We are brought up on the truism that giving is receiving, but this is usually meant as a somewhat vague spiritual reward, and is rarely understood (or acknowledged) as a power dynamic.  My use of the word getting is very deliberate – it is active, whereas receiving is a passive word.

That our fundamental need to give in order to get is seldom spoken of is (at bottom) due to social lying. Neuro-normative culture sentimentalises what is in fact a vital social contract.

People who give are good, worthy, inspiring and downright decent human beings. Yes – they can be (I don’t deny this) , but people who give are in a position to do so. People who give get back untold riches – and not only of the spiritual kind.

Countless micro transactions take place on a daily basis in which invaluable commodities are exchanged. Good will is perhaps one of the most important commodities of all. In so very many contexts good will can be converted (somewhere along the line) into hard cash. Social fluency (of the dominant kind) creates the conditions for this powerful ‘alchemy’.

Without the means to wield this power autistic people can fall prey to a form of ‘social’ poverty which can create a devastating impact on a person over a lifetime, from infancy onwards, from the point at which a child’s babbling is labelled ‘not functional’.

I feel it is this anti-welcome culture which creates a deathly cycle of rejection. Some can face a lifetime of not getting.  This is not just manifest by the grand obsession with ‘curing’ us, it is articulated through every organ of the state in which autistics are deemed deficient and our communication dysfunctional.

This is a catastrophic pile-up of not ‘getting’ which can result in lives lost, lives not lived even halfway to the full, and lives lived on the margin of both economic and emotional survival.

As I write, a vast clump of anti-welcomes forms before my eyes, like a scrap metal tower teetering up into the sky. I tilt my neck, but I cannot see the top.

It sounds like an exaggeration – I wish it was. The truth is that the current neurological hegemony practices daily micro-aggressions in which autistic people are not welcomed. They’re also barred from giving in the mainstream of life.

Some of us experience just enough welcome (important to acknowledge a relative privilege) and gain the tools with which to carve a niche. But too many don’t. Every human needs a baseline of welcome, and access to the power of giving.

Giving is invaluable – a golden seam with which to make a life whole and prosperous. We all need access to the endless rounds of being there and fitting in that a neurologically sanctioned childhood brings, all of which leads to the kinds of ‘getting’ I’m talking about.

For any of this to be put right we need a revolution – and I do believe it’s coming as our understanding about autism continues to grows. At heart the measures needed are truly simple.

We need to change the language of deficit and take the focus away from a ‘cure’ for autism. We need to begin with an open armed welcome for neurological difference within the spectrum that is human culture/s.

We also need to understand that this is not a question of kindness. This is about understanding the nuts and bolts of social power. This is about giving as a right.

 

 

 

 

 

 

 

 

 

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§ 16 Responses to Giving is getting: the social ‘cure’ for autism (the power dynamics exposed).

  • Rhi says:

    Well said 💐

    Liked by 1 person

  • Tim Willow says:

    That was a brilliant way of thinking about it. Marginalised as a result of a power dynamic. Perhaps that people are part of but not always conscious of – making the explanation from those outside even more difficult to explain

    Liked by 4 people

  • alexforshaw says:

    This is making me think. I love it!

    Liked by 1 person

  • hconeil1957 says:

    Thank you so very much for the gift of this article…. I had not seen those terms before..Neuro Divergent or Normative…. It has been a nagging, uncomfortable, angry kind of feeling I’ve had for a couple of years or more.. Since I discovered that my “first word” was tainted by association..’ “Asperger’s Syndrome” was the first truly accurate diagnosis of me, .from the medical profession. I was just beginning to meet with this new Doctor to me… I think it was 1973 or 4…. I was 15, 16 maybe… A severely “damaged” young human I was back then… On the third visit he loaned me a text , with a Chapter on Aspergers Syndrome bookmarked… Easy to remember how it changed everything that I thought that I knew about myself

    At first, not interested, feeling a little resentful that I have to read at least some of that report before the next appointment.. But then it it got into some case histories..and I started seeing parts of me in it. Was very surprised, and beyond interest into my prime MO and read every word wanting to own that data, encode it within…. I cried and cried.. Off and on for 3 days, pretty much. Was seeing the Doc twice a week…. But that was the day that I learned that I was not that sick and twisted “Thing” that I had been so sure that I was.. Something other, not quite human… I was a ward of the courts at the time… having been given to the state of CALIFORNIA by my maternal unit at age 11….The Paternal unit fleeing the scene previously to avoid arrest and prosecution….

    Don’t even feel the least bit down… This was long ago and far away, in a world that no longer exists..

    But the paternal unit was a monster.. A sadist. Control freak. Irish Catholic ancestry both sides, all the way back. Lots of Alcoholism. Depression. Most all the men military professionals….

    He had no clue about Aspergers syndrome. He always thought that he knew better than anyone else, no matter the topic…. I could hear him . Understood his words. He knew that, and it meant that I should also be able obey his rules and conform to his rules. My House, my rules. You don’t like it? Get the fuck out! He had this little Poster framed on the wall in his home office.. Which was also a torture chamber….

    He spent years trying to beat me into ‘acting right’.. BEHAVE OR BE HURT BOY! Then the state got me… Different really bad things happened… I ran away immediately after the first “rape” But ya’ know, 12 year old? Not a lot opportunity to earn an honest living..

    I survived… memory is very strange in me. With some things, non fiction reading in main area of interest? All the pertinent facts seem to permanently stored. I never remember the Authors name, or streets names, but easily recall the titles of every single Book that really thrilled me, surprised me, taught something huge….

    I think, that I may remember, have recorded in HD in my mind, maybe every single act that was ever inflicted upon me by my birth parents.. Some of the things that one or the other would say… They never beat as a team, they were completely seperate in thought and actions, and it was the paternal monster beating the maternal monster a little too carelessly that put her in the hospital and him on the run and me a ward of the courts….

    Liked by 4 people

  • fionafnoble says:

    Sonia, you write so beautifully, so powerfully.

    Liked by 3 people

  • hconeil1957 says:

    Its only been in the past 10 years or so, that I quit trying to “blend in”… But, although I am maybe as “content” with myself, my life, what interactions I have with other humans is generally good… I don’t have any “personal issues” with anyone at all.. I also do not have a single, real friendship… No real intimacy or depth.. I don’t know anyone that I can talk to, on the levels that my own personal self talk originates on…. 1 of my more personal “foibles” is that I have a real need to keep working on me.. I have a thing about being honest with myself.. Which seems to really upset a significant percentage of the genetic normative type…I try to be just the same with every person I have contact with… But have learned to “temper” myself… Which ends with me rarely ever having a “real” conversation face to face, you know? Where you can see that persons truth in their eyes?

    I do get a good “Fix” sometimes on facebook, where I do have 13 or 14 people maybe.. all of whom do communicate nice enough.. Sincere, caring people, real people…

    Normatives, but we have a real connection… Its just so little.. They all have good lives of their own, work school, passions…. Minor human beings, some have to look out for… Time can become a rare luxury one might hesitate to spend without thought.. Comparison shopping

    Liked by 2 people

  • I’ve read this post three times now. It’s brilliant. Thank you xx

    Like

  • Powerful words. And so true.

    Like

  • Deborah Gray says:

    Thank-you Sonia. Your words are a gift.
    I’m going to print this out and frame it.

    Liked by 2 people

  • Reblogged this on bunnyhopscotch and commented:
    If you read only one thing this weekend, read this!

    “The truth is that the current neurological hegemony practices daily micro-aggressions in which autistic people are not welcomed. They’re also barred from giving in the mainstream of life.

    Some of us experience just enough welcome (important to acknowledge a relative privilege) and gain the tools with which to carve a niche. But too many don’t. Every human needs a baseline of welcome, and access to the power of giving.”

    Liked by 1 person

  • […] Source: Giving is getting: the social ‘cure’ for autism (the power dynamics exposed). | The other side […]

    Like

  • reward9 says:

    Newly diagnosed, at 51. I have read it once, and I intend to come back and read it again. And probably again! It resonates so powerfully, thank you x

    Liked by 2 people

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