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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Autistic resilience: talking up competence.

February 25, 2017 § 18 Comments

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(Work in progress on the theme of resilience, © Sonia Bouè 2017)

This week has been rocky. I want to talk about anxiety.

Anxieties collide sometimes don’t they? Stuff can accumulate and escalate. World events, a health glitch, a seriously upset neurotypical (NT) friend.

(For the sake of clarity. I should stress here that my friend was not upset with me but rather shared their distress with me).

For an autistic person this can rapidly begin to feel ‘disproportionately’ dark.

What I mean is that for autistics the confluence of events within a short time frame is often what proves disorientating, and I’m trying to analyse the cause. I think that probably some of our anxieties are related to what I think of as imperfect information in the moment. I find this a useful phrase when applied to autistic styles of perception in a neurologically  biased  world. It’s the difference between playing poker or chess – in the former the cards are concealed during play and in the latter the whole state of play is visible throughout. In an NT world we’re playing poker.

I’ve added ‘in the moment’ to my sentence signalling the potential to disentangle events in time.  We are not incapable and we are not helpless – with enough space (and/or support) to do so we can process life’s social and emotional  vicissitudes in our own ways.

Autistics process sensory data and social interaction in a multiplicity of different ways from the majority neuro-normative population. This (logically) creates a very different bank of information from which to draw inference and make decisions for autistics. The world hooks up differently around another set of priorities.

But its even more complicated for us than just this – as this majority population is (of course) made up of individuals. Result? A mountain of permutations of ‘missing’ data for autistics to deal with in ‘real time’.

A literal mountain, which I’m going to call Mount Blank. Yes.

And it really is a BLANK until processing kicks in. This can feel like a dense fog laced with school girl dread. But I find that it’s often possible to simply push the feeling away and move on. We can be resilient like that. Perhaps we underestimate just how hard we’re working everyday to keep afloat in a world which does not support our divergent neurologies – and it is this effort which exhausts us.

But back to Mount Blank. Standing at the bottom can make you feel terribly small (echoes of my school days again). Perhaps this is why a series of unfortunate events within a short space of time have the potential to crush the soul – you are a child again. As the mountain of imperfect information grows it can feel as though you’re shrinking before it.

World events overshadow all out lives at present, but I think that for autistics it’s often the ‘micro’ incidents which stack up without us realising their impact.

And the causes of our confusion are not sensory or perceptual alone, they also lie in never knowing if people are saying what they mean – rather than just being polite, trotting out platitudes or worse. These habits of neurotypical obsfucation add to the scale of Mount Blank. Worse still (I might add) is being versed in this culture as an autistic. Oh the tangles! As you venture your polite falsies (as I’ll call them) and tie yourself in lying little knots.

And because no-one quite tells social ‘truths’, when things go wrong or just feel wrong (in the moment) there’s a  tendency to self-blame. Which is especially debilitating. I think this is the point at which self-compassion must intervene. Imperfect information flows from the majority game of choice and not the individual. Withdrawing from play (taking time for processing) and/or researching* the other player’s hand (many ways to do this including talking things over with an autistic and/or NT friend) are strategies  I would consider next time I hit Mount Blank.

But unpicking and thus identifying this pattern* has got to be one hell of a route to resisting it’s effects. Resilience is often knowledge plus practice.

The road to resilience is all about talking up competence – and this begins with me.

*autistic strengths

The casual cymbal and the traffic cop #autism

December 8, 2016 § 14 Comments

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It’s been interesting lately. Autistic truths rain down on me and I make progress in my understanding of a fundamental difference – it’s the day-to-day truths that crystallise and move in.

I am at a concert alone because my husband is ill. My strategy to arrive just in time mainly works. I gain a seat at the back (I won’t see my daughter – competition for seats is a ruthless elbow grazer and not for me  – but I am near the door). At the last moment I see someone I know, and we talk briefly before she finds a seat. This is okay.

Half familiar faces blur around me. I’m not sure whether to nod, but our eyes don’t meet – so I guess not. I glance at my phone, send a message, and feel the comforting spine of the book  I prepared earlier. It takes a minute to notice that the noise is extraordinary. The acoustics in this elegant and lofty church are too good . The babble of voices casually cymbal  – in every pew people are talking. For me this is waiting.

But the lighting is gentle  and the air is warm,  yet still I wrap my legs in a tight knot. How did I never register such tension before? It’s a classic me pose and my hips feel brittle and worn – as thought they might snap.

A man stands before us to make an announcement. He does not understand about voice projection. His underwater mumbling tickles my funny bone and I exchange amused glances with a young woman I realise I do know across the aisle. I’m now in deep peril. Uncontrollable laughter (silent shoulder shakes) could seize me, and so I gulp hard and look at my feet feeling lucky that the woman sitting next to me shows no social interest in me. This is all so random. I sit at the shore it seems.

I am relieved when the choir files in, knowing that I will cry and no longer feeling shame. I have tissues and am prepared – learning to savour this trait and understanding that my tears are a bodily reaction. What I experience is a simple response to stimuli by a hyper sensorially alert nervous system. A system so calibrated that I am highly attuned to danger and emotion – this is the core of my difference and why I can’t shrug off the ‘ordinary’. These are assets as a mother and an artist – I can enjoy my tears. I’m grateful at last.

These voices are exquisite – many on the cusp of womanhood pierce my heart.

I hang in knowing that this will probably take an hour, maybe more (but not by much I hope). More than enough time to get distracted, notice a child playing with her muffler (oh the boredom at that age!) and her mother steadily marking homework with a red biro. Admirable multi-tasking. Discreet too. The kind of hands whose writing could probably stay neat on the deck of the Titanic. Momentarily I envy her, my mind playing over the myriad circumstances under which I lose coordination and descend into scrawl. Indecipherable letters but mine own, now revealed as part of the greater whole.

The other day I imagined the difficulty managing information flow (of all kinds including sensory) and coordinating responses in autism as the want of a traffic cop at an  intersection during rush hour.

But it’s always rush hour unless you make it stop. You make it stop by withdrawing to where you can control the flow.

It’s very simple.

But there’s more. I have not bargained for the ultimate neurotypical surprise. The interval! After 40 minutes things stop. What?

People it seems would prefer to have a break from the music they’ve come to hear to talk to one another some more, and drink from an assortment of hot and cold beverages of the type they can have at home! Good God! This is fantastically strange and eccentric.

It goes on. I am blessed. My daughter arrives knowing that I will be at sea, she thinks to come and give me a hug and takes time from the dressing room to swap notes on the hours we’ve spent apart. I tell of my astonishment – the ways of the socially needy! I whisper.

We smile and the room dissolves.

© Sonia Boué 2016

Processing success #autism

October 20, 2016 § Leave a comment

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Photograph by Stu Allsopp

Understanding that there is a delay, is helping me somewhat. My recent diagnosis of autism means I am beginning to realise that there is sometimes a disconnect. It takes time to know what I’m feeling when activity steps up in intensity.

The past few weeks have been madly busy by anyone’s standards. I’ve brought my Spanish Civil War project, about British artist Felicia Browne, to a successful conclusion and it’s time to slow down a little. I can’t stop though as work comes in on the back of our events, mainly in the form of  requests for talks which have to be written. I have to draw all the elements of the project together in a report and send in an evaluation to my funders. Tomorrow I will run a workshop which needed careful thought and a lot of equipment, including rather fine teas and coffee to keep us going. I have new projects on the horizon. But mainly my family need me back and my focus is returning.

I’ve had my moments of relaxation and brief snatches of joy. Taking my family to see the work last weekend was a high point among others.

Yet a sense of satisfaction is elusive – and I know that this is partly because some of the people I really wanted to see the work couldn’t make it. I think I have a right to feel sad about that. These particular people matter and the work matters. I have to wait and plot more showings, while knowing that this symbolic showing was special and can’t be repeated. Site specific work of this nature is temporal reminding us that everything is.

I’m sad mainly at how hard it is to make the work accessible to all the people I wish could see it – including those no longer with us. I seem to be glancing against a shard of grief like a broken bottle in the shallows. My work usually mitigates sadness – in honouring my father and my grandparents I actually feel more connected. But this time it’s different. The poignancy of the two project mama’s meeting one another at the exhibition when their now dead Spanish exile husbands were the connector was sometimes hard to bear, and I have a new work in the studio which features family photographs – it’s proving emotional.

I also want more people to know about Felicia – and I’m sad about that too. She deserves to be more remembered and for this I have to play the longer game and trust that this is just a beginning. We’ve had such a brilliant response to the work – now we need to find it a bigger stage.

I have to hold on to my original vision of bringing the history home as a symbolic act – and this being achieved in the most beautiful setting imaginable. In this and in all the wonderful responses to the work we have succeeded.

You can read all about the project here.

A Shot in the Dark. Autism and TMS.

April 6, 2016 § 18 Comments

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“Sometimes I allowed my thoughts, unchecked by reason, to ramble in the fields of Paradise, and dared to fancy amiable and lovely creatures sympathizing with my feelings and cheering my gloom; their angelic countenances breathed smiles of consolation. But it was all a dream; no Eve soothed my sorrows nor shared my thoughts; I was alone.”

Frankenstein by Mary Shelley

“During a TMS procedure, a magnetic field generator, or “coil”, is placed near the head of the person receiving the treatment.[1]:3 The coil produces small electric currents in the region of the brain just under the coil via electromagnetic induction. The coil is connected to a pulse generator, or stimulator, that delivers electric current to the coil.”

Wikipedia

There is a certain easy parallel to be drawn between John Elder Robison’s Switched On, and Mary Shelley’s Frankenstein.  Application of electricity near the region of the brain via TMS strikes me potentially as the nightmare of fiction brought to life in the neuroscience labs of today. But mostly I chose this quotation because it is the version of autism as the alienated monster in John Elder Robison’s book which unsettles me so.

A Shot In The Dark is a personal response to a new book called “Switched On” by autism advocate John Elder Robison. Switched on is an account of his experience as a subject on an experimental research project for Transcranial Magnetic Stimulation/ TMS. It must be said right away that this was undertaken by John as a potential treatment for his autism. Many autistic people I know, would flinch at such a notion. I flinch because this hurts me. I feel I don’t need a cure, but rather that what is needed is understanding.  But I remind myself that autistic people can suffer distressing co-morbid conditions, and their families may struggle to understand the distinction between this fact and the alternative paradigm of autistic consciousness. Society is also cruel to difference and especially cruel to the physical embodiment of difference. Autistic people and their families especially suffer societal cruelty. This too is often confused with autism itself.

The spectre of autism cure (rather than social change) can thus appear as a dazzling light, which blinds many to such reasoning, when reason is what is most needed to see our way through what is a tangled web of shifting and often suspect moral values, and a bloody history of crimes against disability. This book, I will argue, seeks to hover in a the kind of vacuum (devoid of historical or social context) which serves mainly those who are against brain diversity and are anti-disability. In other words it (unwittingly I believe) plays into the hands of those eugenicist in spirit. This may seem exaggerated, yet it isn’t. Read on and you will see how John himself leads us to this question in his own concluding chapter.

So, I am tempted to say that Switched On, might as well have been written on a red rag (I’m thinking autism cure lobby as the bull here) and leave it there. I note how few commentators there have been for this work to date – it is indeed tempting to put it aside and move on. Yet I feel I must go on because this is a subject too important for cursory dismissal. Also because John himself is a powerful voice within a wider cultural sphere of influence that accepts, assimilates and disseminates autism cure as valid and moral.

My first point though is that I am grateful to John for his helpful responses to my comments on both FaceBook and Twitter. In the autism world many feel beleaguered and at war, for the reasons I describe above. I feel it is important to express difference, sometimes anger (it is often a useful tool), but mainly I want to show respect to the multiple opinions I encounter. I know that for most autistic people life has contained much struggle, especially to obtain dignity and to be heard. It’s in the latter spirit of respect that I try to proceed. Nonetheless my perspective is radically opposed to John’s and it will be important to write with clarity about this and that it be understood that my piece is in no way a personal attack.

John Elder Robison’s dust jacket for, Switched On, claims he is,

“…a world recognised authority on life with autism…”

Recognition (and by whom) is one thing, but if we are being honest it is more accurate to say that John is an authority on his own life with autism (and those he has encountered ). We are, after all, in a groundbreaking era in which we begin to understand (and hopefully acknowledge) that it takes all kinds of autistics to make a world. More specifically, John Elder Robison is absolutely not speaking for me and my autism in this book. Many autistics I know would agree.

As an autistic I’m duty bound to respect John’s self-advocacy, and also his right to undertake whatever brain experiment he choses for himself. The problem occurs, as I suggest above, because in spite of his disclaimers, his blogs and now this publication will function as promulgation of a cure for autism. My note in the margin on reading about his immediate blogging right after the TMS began – which created an influx of volunteers for the protocol – reads, “unethical to blog so early”. I believe that on this count he has been sincere in his enthusiasm but hopelessly naive about the response to his findings.

Throughout this book I hear a conflicted voice, and I hear confusion. There’s an important reason for this. I fear that John Elder Robison does not like his autistic self (though there are many pages devoted to his accomplishments) causing him to stumble somewhat in making his way through the moral complexities of the subject effectively. Sentences meander this way and that – an attempt to tease out ethics I know – but ultimately his enthusiasm for the science always wins. The chimera of autism cure is too powerful for him to resist.

So although he talks nuance and advocates caution (for children – in case we miss their exceptionality), we know that the cure lobby will be unlikely to listen – and why would they listen to such a muffled voice? But they should listen and listen hard. Not least because I wonder if John is even (strictly speaking) talking about autism in this account?

John has alexithymia. A co-condition for some autistics and also present in non-autistics, alexithymia is defined as the inability to recognise emotions in both oneself and in others. This is not a diagnostic criteria for autism, yet this appears to be at the core of John’s TMS experiment in both focus and effect. Some of us are empaths and don’t need our emotions to be switched on. (Since writing this piece I have also been appraised that this may also be true in alexithymia, which is not in itself an absence of emotion but rather a difficulty in identifying, and articulation of emotion).

This should give pause for thought, as some of the most traumatic experiences for John in his TMS journey  involved over intense emotional responses to ordinary levels of emotional stimuli. We could speculate that John experienced what it is to be an empath having lost elements of the so-called “protective” functions of alexithymia (as the lead researcher suggests). This was both exhilarating for him (producing joyful connection and hallucinations) and debilitating to an almost fatal degree. I’ve called this piece, A Shot in the Dark, for it’s dual meaning. On page 221 we learn that,

“ I think suicide was an impulse that snuck up on me when I was overcome by what felt like never-ending psychic pain. In one of those moments I came an inch from shooting myself on my back deck, but at the last second I turned away.”

Suicidal ideation beset John on several occasions. Why these brushes with death – a direct result of TMS reshaping his emotional landscape (and I would say the loss of his internal compass) – are buried thus in the latter stages of the book is a mystery to me. Shouldn’t this be the first thing you learn about TMS? It’s just one (important) example of how this type of autobiographical account hinging on chronology of fact rather than salience of point can prove unhelpful to rational analysis.

A Shot in the Dark, also refers to page after page of John’s theorising conversations with Dr. Alvaro Pascual-Leone (the TMS specialist and research lead). It is clear that the experiment (previously carried out on lab animals) was in all senses a leap of faith, an encounter with the unknown whose outcomes could have been negative and distressing (and indeed often were). On many occasions I wrote “clueless” in the margin indicating that Dr Pascual-Leone simply didn’t know why John responded to the treatment the way he did. John’s speculations are literally shots in the dark, and in my view weaken both the narrative and the science with multiple rabbit holes.

At one point, John raises the issue of emotional support as a necessary adjunct to TMS with Dr Pascual-Leone. But, Alvaro (as he becomes) explains that this would ruin the experiment’s results. You wouldn’t know which intervention had produced what results. Right. Again this is information is served chronologically and we don’t hear how John’s suicidal vulnerability impacts on the science protocol. This is something I should like to know about.

Another observation is that John received an incredible (and most probably clinically significant) amount of input from the research team. John was valued both as subject and for his opinions. The team shared knowledge and supported his autistic style of processing the experience (to become expert). TMS  became a compelling interest for John allowing him to develop a new range of topics, relationships and opportunities through which to be valued (such as his role in advising on research).  We know that validating collegial style friendships, and supportive environments in which autistic people are valued for their particular skill sets can be powerfully enabling and connecting. Which is kind of my point in writing this piece. There was a powerful social change in John’s life as a result of the protocol.

John is clearly a hugely intelligent and capable man, able to demonstrate the power of autistic learning styles (often autodidactic) and thus an attractive role model for parents and young people alike. It therefore saddened me at almost every turn to read his views about autistic people (only marginally modified in his postscript). John demonstrates what can be termed internalised ableism.  This can and does happen (it is a powerfully prevalent social value/norm embedded in many cultures) creating havoc with self-esteem. I felt that John was only able to value the exceptionality of autism and not think positively about disability.

The reason being that he has allied himself to the medical model of disability, side-stepping social models almost entirely in this book. Therefore the underlying philosophy with which he advocates is not only one-sided, it’s also ableist. Lodging disability in the individual, naturally places responsibility for change at this level. John also continually practices a disturbing two tier system of human value.

“After fifty years I’d come to accept my lot in life, but now that I saw a chance to leave second-class citizenship behind I was going to grab it.” p10

Ouch. Equality anyone?

Talk is always binary – disability pitches against exceptionality at each and every mention. To be fair John advocates caution about treatment for children, and is aware of the dangers for adults too, particularly when he speculates on the possibility of using TMS in combination with advances in MRI imaging which might help to target areas of the brain and deploy seemingly mind reading capabilities with which to better our brains (George Orwell country, to be sure). But I was stopped in my tracks at the most sinister of allusions, which unmasked the issue at the core of TMS and autism, pretty much like the curtain lifting scene in The Wizard of Oz. I will return to this below.

John is clearly excited by what appears to be at the forefront of scientific development in neuroscience. How a book published in 2016 by such a man then seemingly ignores the seismic developments in our conceptualising about autism from the thought pioneers in the field is another mystery. You only have to read the transcript of Steve Silberman’s recent UN keynote address on autism to understand how at odds this truly is. It’s as though the social context is irrelevant to questions of scientific research when indeed it is key. Any considerations of social justice, and of valuing all human life as equal are essentially absent from Switched On, instead we feel the icy shadow of normalisation fall as the book closes.

I noted that among the devastating effects of TMS,  John conversely found resolution and redemption through relationship. A relationship he determines was made possible through the beneficial effects of TMS (kickstarted by treatment but truly worked on by John himself). No doubt John’s third wife has a talent for relationship of a certain kind. Such people do exist – I know several. I do not believe that Maripat’s healing effects on John’s extended yet fractured family can be attributed to his TMS. That the effects of TMS made John ready for a new kind of relationship is also a loaded question – how much the social effects of undergoing the protocol influenced this too will probably never be known.

It is perhaps more accurate to say that undergoing the TMS protocol in it’s entirety (also as an intense social experience) has wrought the changes he’s keen to publicise. Will I be alone in feeling uncomfortable with the chapters about John’s personal relationships? Relevant to an account of relatedness as they may be it must also be remembered that they are by nature highly subjective. Fair play, this is personal account but I feel John goes beyond remit with his expert advocate hat on. I don’t feel you can have this both ways.

I also dislike the hierarchical position given in this account to neurotypical relatedness as primary and more satisfying. This is in itself could be the subject for an entire blog post.

More importantly for the question of TMS, in the later sections we meet a young man called Nick whose TMS proved painful on administration (he asked for treatment to be stopped) yet it produced some notable results for a period of time. To cut a long story short, he became seemingly more recognisably neurotypical, and his delighted parents brought him in for more treatments. Subsequently he “regressed” and refused further TMS. His mother has however founded an non-profit organisation to fund research into autism and TMS.

Here we brush up against the very autism war I refer to in my first paragraphs – sometimes characterised as a battle between parental perception and autistic autonomy. I believe it is more properly described as a rights based issue and a question of autistic identity. Furthermore, while emotional intelligence, as described on page 270, continues to be defined in neurotypical terms (as John so clearly does) our autistic brains remain in danger of the cure myth and the battles continue.

But of course it is all far more sinister than this. In discussing the ethics of brain imaging and TMS in combination, John reveals the deadly nub of the problem, a la Wizard of Oz.

“A hundred years ago we imagined the prospect of improved humanity through eugenics, breeding the supermen of tomorrow. Soon brain imaging and stimulation may offer us the ability to make ourselves into those supermen. But what will be the price.”

My distress on reading Switched On, is increased because it feels like something of an own goal.  Zapping our plastic brains into normality or even optimal exceptionality is simply not a future we should be contemplating. The potential for violation of neurodiverse individuals is clearly right there.

I have found it extraordinary the lengths to which John has been willing to go to change himself and achieve what he believes to be superior connectedness. On his second TMS stimulation his then wife Martha accompanied him as an observer.

“Martha said my face had twisted with every pop of the coil, but the thing that most disturbed her was my strange expression.” p87

And later,

“This time I had to clench my jaw to keep my teeth from clattering together, which was somewhat uncomfortable.” p90

I have written in the margin, “this is truly horrible.” I believe that it is.

Inevitability (which John contends re TMS) is no argument. Inevitability as justification is simply a moral bypass. My contention in full is simple. Why should autistic people be made to believe they must alter their brains (by whatever means) when autistic brains are not the problem. By the by (and no offence) there are many disadvantages to neurotypicality if we’re going there. Social solutions to the lack of parity and respect shown to autistic people are what’s required. A shift in paradigm is needed and this takes time. The first step is, I believe, self acceptance (and self-love) for autistics  rather than the particular brand of low self-esteem that treatment options like TMS would appear to represent.

There are very many way to achieve connectedness and to value alternative forms of being connected. There are also many ways to achieve change.

In conclusion. I think this is an important book – but probably for the wrong reasons. Some may find it either painful or annoying, others I’m afraid will find it inspiring. It is interesting. Mainly it’s an important read for anyone concerned with ensuring the future of brain diversity. I found the book both revealing and troubling about what the future may hold for subsequent generations. As John himself has said, TMS is not a free ride.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Switched Off? (Autism and TMS).

March 25, 2016 § 13 Comments

 

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Photograph by Stu Allsopp at our switched on PV for Autism Family Support Oxfordshire’s Brain Dancing exhibition. 

This post is about my personal reflections on and responses to John Elder Robison’s piece on TMS in The Thinking Person’s Guide to Autism.

Last night I read the interview with John Elder Robison on The Thinking Person’s Guide to Autism’s Facebook page about his experimental treatment with Transcranial Magnetic Stimulation (TMS) and its possible implications for autistics. I found it an exceptionally sad and frankly worrying piece.

John opens with the following statement:

“There is no ethical problem with an adult like me going into TMS therapy eyes wide open.”

Perhaps not, but I’m not sure writing a book publicising TMS  – at this early point – is the way to go for autism.

I have to say that John appears sincere in this interview. However, I believe that airing our differences is vital to our progress as a social justice movement. Autistic people are not one voice.

So I want to address some of the issues raised for me as a newly diagnosed autistic woman.

John goes on to say this.

“Using TMS to reshape a five-year-old is a lot chancier.”

I would go further. It is likely unethical. As John himself says, it’s outcomes are uncertain. But we must also consider autism as culture and identity. Viewed from this perspective, TMS could raise similar questions to those of gender reassignment at birth, we are also looking at parallels with the notion of gay cure. Both of these unethical practices are becoming history as our progress in understanding human diversity has increased.

I am left wondering what would have become of me, had this treatment been available to my parents back in the 1960s. It is quite a terrifying thought.

Robison says this book exists to open a dialogue about an inevitable treatment development. It is in the spirit of public service he has ventured forth. I don’t doubt his sincerity but I believe he is misguided.

So I’ve called this post, switched off, because it seems to me that John Elder Robison has lost as much as he has gained. To put it in simplistic terms – in switching some areas of brain function on – John has sacrificed others.

I should state right now that I’m coming at this from an empath’s perspective. I don’t have a difficulty connecting to my emotions or those of others. Indeed I am flooded with them. So it’s difficult for me to know what it is like to feel isolated from your own emotional world and that of others. Not withstanding, these are my thoughts on what happened to John.

He now processes his photographs entirely differently. Mainly colour saturation is turned up to the max. Why? I wonder what has happened to certain areas of perceptual function in using TMS? Certainly colour is being filtered very differently and the photograph taken by John before TMS is correct in colour balance, whereas TMS appears to have created a significant distortion.

As an artist – let alone as an autistic – I would be frankly unwilling to undertake such an experiment in the same way that I’m not willing to risk laser correction and prefer to wear varifocal lenses. My art expresses exactly who I am in the most precise perceptual terms. The risk, it appears, could be a loss of my creative vision and identity, also of becoming a lesser artist.

There’s also been a true unhappiness in personal circumstances. John’s experiment with TMS has led to divorce. How very, very sad. I couldn’t bear to think of loosing my life partner, nor that any treatment I had chosen would precipitate such a radical and negative change in life circumstances.

We’re talking about seismic shifts in the internal landscape of an individual with TMS. I like my inner geography and I don’t want to find myself in another country.

Might any of this have been worth embarking on TMS for? What has John gained?

In his own words:

“Looking back at the experience I’d say the benefits were great, but the cost was very high. Contrary to what I had thought, “getting smarter” is not a free ride.”

It is worth repeating that TMS is not a free ride – and to ask how this might translate for our children. It reads like John has been scarred by his TMS experience.

I note too the “getting smarter” in quotations. John it seems to me was smart before TMS, but his smarts were autistic smarts plain and simple. Robison risks the charge of internalised ableism – a problematic platform from which to practice advocacy I must say.

The gains have been emotional awareness, including extremely painful memories, which had been previously been blocked. John is also able to connect to people, unlike before, and is compelled in his advocacy, making friends everywhere.

This seems to summarise the plusses in John’s terms. He concedes that his business was more successful before, but that his advocacy is more meaningful to him. Perhaps what he has gained is a sense of purpose? On balance Robison cannot say that he is happier – his interview is wary.

John observes social isolation as a primary disabling factor in autism, but remains pessimistic about social solutions, believing that others cannot change sufficiently in their level of acceptance of “switched off” social behaviour. From this viewpoint, it is logical to place the responsibility with the affected individual to effect self-change via whatever therapy available. I disagree, and add that this argument could also be used to justified ABA, for example.

So what’s wrong with his analysis? Basically that we must have a high threshold of tolerance for intolerance. Must we really damn neurotypical people as incapable of ever developing empathy for and understanding of autism? No, I don’t believe so.

Yesterday I was privileged to attend a private view of a show called Brain Dancing, to which I both contributed works and assisted with curation. It was an exhibition in celebration of autistic creativity hosted by a local charity called, Autism Family Support Oxfordshire. Autistic people were prized and accepted by all who attended and supported the event. It was wonderfully connecting.

This was a space in which the disabling elements of social disconnection had been eliminated. Every effort of accommodation had been thought about from the meta message contained within the hang of the works, to the exact tilt of the electric lights in the gallery.

It is but one example of the spaces that can be created when the will is there. I don’t believe that autistics need to be ostracised in any society in which difference is valued and the benefits of autism are well understood.

Late last night as I drifted off to sleep thoughts of John’s experiment washed about and began to filter through to my subconscious. By the morning I knew I would write about this and had a good idea about what to say.

I concluded that I like myself too much as I am to ever want to try such a thing. My recent diagnosis has brought me wave after wave of self acceptance and self love.

John’s analysis circumvents this point about self acceptance and self love being the fountainhead of the change we seek as a social movement. Autism as culture is what switches me on.

I agree that any treatment which may help epilepsy or any such potentially life threatening conditions sounds interesting from this point of view. However, I fear very much that John’s book, however well intentioned, is in real and present danger of throwing fuel onto the fire of autism cure.

 

Am I a Mouse? Or more tails of autism.

March 17, 2016 § 4 Comments

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I’m now asking myself  if I’ll have to write a blog post a day to cope with all the upsetting things that float my way on the internet. Perhaps I should just stop checking my Twitter feed.  But then I would miss such gems as the salient fact that zinc could help me and other’s like me.

Today’s tasty morsel is the following science paper tweeted out by Michelle Dawson. (NB. My post is no comment on Michelle whatsoever)

I’m not a scientist and I didn’t get too far in reading the actual text in detail I’ll admit. The emotional cut off point was just beyond this,

“In particular, prenatal zinc deficient but not acute zinc deficient animals have been reported to display autism like behavior in some behavioral tests. However, a full behavioral analysis of a possible autism like behavior has been lacking so far.”

My reading of this study is that it suggests a lack of zinc in pregnancy (of mice) may lead to increases in anxious behaviours in (mice) offspring.

Zinc deficiency may be linked to anxiety. Some autistic people may have been subject to this in utero and be zinc deficient in further life.  This latter has been shown to be the case and I know that I am zinc deficient (scoots off the chemist).

But I am quietly stunned by this work on autism like symptoms in mice and it’s further implications. Am I alone in my profound alienation? I suspect cultural dissonance to be the root cause of my feelings.  I feel strongly that “autism like behaviour in mice” or indeed “possible autism like behaviour” in mice have nothing to do with me, and the behaviours seen in these mice are selected and presented with an NT bias. Dodgy nest-building  in mice for example. What does that translate as in human autistics? Maternal mice instincts askew? No, mine are intact.

No disrespect to the mice of course (I feel quite sorry for them in all this testing), and I’m very happy to take zinc to help with gut function and any other areas of discomfort it might help with.

Anxiety is no good thing – but we must consider that anxiety also has origins in hostile social environments and due to sensory overload. Stigma, discrimination and human cruelty are also significant contributory factors as causations in anxiety for autistic people. No amount of zinc will change that.

But this is the power of prevailing cultural norms. When I pinch myself in the mornings to be sure my new diagnosis of Asperger Syndrome is true, will I now also be checking for mouse ears and a tail. Will I shake my head in wonder and ask myself  am I a mouse?

This is all without touching on the male/female right or wrong number of marbles question. Forgive me for giving it a miss. Why does it feel like I have lost my marbles when it could be that someone else may have lost theirs…

#itsanNTworld

 

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