December 16, 2018 § 2 Comments
Sliding back in time
I’m writing under rather constrained circumstances – which is ironic. I spent the past 24 hours absorbing exactly how free I am inside. But I am now on a packed commuter train heading home, hugging my newfound insight.
Visiting my mother, who’s been feeling quite under the weather since her recent stay in hospital, has been a curious joy. We conspired over dinner last night – chocolate mochi are not really a recommended desert for someone in her condition but, being both new to her and deliciously moorish, they lent an air of celebration. For a moment I wished I’d bought beer. Such exuberance felt precious. A gift.
I want to talk about mapping and memory
Whenever I visit my family home I have to conduct a close scrutiny of my surroundings. I can’t help myself. It is a compulsion I’ve come to understand as my way of working (I work with family memory after all), but it’s as important to me as breathing. It’s also how I process the world – I’m looking for traces, filling the gaps.
When you have severe challenge in the area of working memory it is easy to lose your way in life. It’s even easy to lose your way to the fridge! People like me need a trail of breadcrumbs – material memory is one term I’ve heard used a great deal to express the importance of objects, and I think of them as resonant ‘beings’. Objects contain memory – photographs do this especially well as we know, and I love photographs beyond words.
This post will be about some extraordinary pictures and a new way of thinking about myself.
I imagine (but can’t know) that as a blind person might navigate through touch, I often say that I feel my way through life and I do – both literally and metaphorically. I have to circle, and scan cupboards, shelves and bookcases. I must open drawers and lift papers, open boxes and hold cups, jug and curios. Not surprising then that mine is also the joy of the thrift store and flea market – though this is a more distant pleasure.
Some family items become incorporated into my object work (with my mother’s permission of course). This has become a collaboration of sorts. Look! Oh look! we say. She’s grown to understand my ways. My need for these objects is visceral.
The following morning the bookcase in my mother’s study yielded a curious collection of slides from the Louvre – mainly of Impressionist paintings. Dad must have been very taken. You could get a good money for them on Etsy these days. That’s by the by – it’s just that I spend a lot of time trawling and I know the market. What they offer in that moment is a breadcrumb, an aide memoire – associative thinking is what I rely on.
Several days ago an artist I know called out for a freestanding pull-down projector screen. I have one but didn’t offer – it was out of range, and had spent the past 40 years under my mother’s sofa. Sitting next to it a Braun slide projector of the same vintage. How I came to have these objects is a story of parental hope. After a long struggle with school I had managed to get to university to read Art History – mum and dad must have been overjoyed. Buying me a projector was their loving endorsement of what they imagined was my new found career. But I, wayward as ever, ditched Art History at the first opportunity! So there it had remained.
A drawing of the kind of screen the artist was looking for had triggered a memory. I vowed to try out the projector on my next visit home, but had forgotten this entirely until I found my father’s slides from the Louvre. Gracias, papa!
I ran to the sofa, and the boxes containing both screen and projector were there, dusty yet full of their original promise. Two further moments of dramatic tension ensued. Would the projector work after all this time (yes beautifully!) and would I be able to fix the screen which had unfurled in a fury and come adrift from it’s moorings with an unhealthy twang at first opening! Eventually, yes – but not without bloodshed. Imagine teasing a stubborn and sticky connecting tape from the innards of a hefty metal roller-blind mechanism with forefinger and thumb. They don’t make them like this anymore.
So it was quite a process to resurrect the screen, but the Braun projector emerged as an intuitive machine – using this old technology (to view dad’s early family photos) enhanced the experience. So many layers to ‘old tech’ assisted recall, so many ways in which this viewing signalled a sense of embodied return. You press a button to activate a lever which physically moves the slides one by one – I tried to explain to mum about powerpoint but it didn’t translate. She’s 91 and has never sent an email.
An unexpected adjunct to my recent forays into the land of self-discovery! The camera lens requires a certain stillness in its subjects but I, as a child, appear to have been in almost constant motion! When I am required to be still my body twists, my hands shoot to my mouth, balance seems precarious; but mainly I am brimming with exuberance. Moi? By coincidence I had just left a friend in town the afternoon before, on my way to mum’s, who used this self same word about me. Really? I remarked genuinely surprised. I am not in contact with my own exuberance.
As a child of the 60s exuberance was probably not welcomed outside the family home. En famille (from the evidence before me) it looks as though I was loved, no to say indulged for it. I suspect this is the secret of my resilience as a late diagnosed autistic human.
Exuberance is something which can be crushed though, and this is a sadness to me. Though if I was/am that child I see, I can begin to reclaim her.
This thought brims over and excites me as much as the heady detail of sock and shoe, and each re-remembered dress. Material memory, is a truly wonderful thing.
NB. 10 days have gone by since writing this piece and I’ve been struggling with flu ever since. I must have caught it on that damn train!
December 8, 2016 § 14 Comments
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
April 6, 2016 § 18 Comments
“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.: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.”
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
“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.
March 25, 2016 § 13 Comments
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.
March 12, 2016 § 7 Comments
My paintings (Earth and Sky) will be included in an exhibition called Brain Dancing, hosted by Autism Family Support, Oxfordshire)
So how has it been to spend my first week as a newly diagnosed person?
(You can read about my diagnosis in Asperger Syndrome and Me)
To say that I am ON TOP OF THE WORLD would be metaphorically accurate. I wake early. Waves of euphoria and wonder wash over me as I greet each new day.
It seems there is nothing like the true power of knowing yourself to make you feel solid and substantial rather than composed of wavy lines (like a grinning Cheshire cat liable to disappear at any moment). No need to feel like a person who is doing a bad job of being a person anymore.
An apple among bananas comes to mind, or perhaps it would be the other way round? Knowing I’m an apple and not a banana (or vice versa as the case may be) means I can be just the type of fruit I was meant to be. I’m good as an apple. Let’s go with that.
These thoughts conjure a fruit basket – I can almost touch – where apples and bananas sit together comfortably, their distinct shapes and colours proving complimentary. You could never confuse one for the other. They are palpably and indisputably different.
It makes perfect sense to me to say – and so it is with brains, except that we can’t see them.
And so you can imagine the struggle and often impossibility of fitting an apple shaped brain into a banana shaped world.
But now I don’t have to. Well, not all the time. Crucially, I never have to feel lesser when the fit is wrong. I am not wrong.
Yesterday I tagged along briefly in a conversation about the word spectrum. On the spectrum is often used in lieu of autism or autistic. Spectrum is way softer than autistic in sound I notice. I will be thinking about this some more.
Presently, the collective view is that the only really good fruit to be is banana shaped, and so it’s important to look like one if you can (hence passing). But the apples know this isn’t so.
Let’s not kid ourselves some of the bananas haven’t caught up with where the apples are at core (excuse the pun). Not being a banana is pretty good too.
And I’m not talking about best apples, or a spectrum of apples. In my mind apples are apples. Apples don’t do lines. This is how my apple brain works.
It is also true that there are many kinds of apples. Many.
January 9, 2016 § 2 Comments
I decided to capture an experience I am becoming aware of as an expression of my neurodivergence. It is my love of people watching. A sense of connection is forged through observation.
Very different from my usual video work. For the Sake of Nostalgia takes it’s title from a snippet of overheard conversation which is recorded in the video but is somewhat lost in the soundtrack. It’s an attempt to explore different forms of relatedness and alternative storytelling with the absence of character or protagonist the story becomes abstract, fleeting and without clear focus. It becomes truer to life in this sense.
However the sound track and the decision to use a filter manipulate the viewer. The footage is random and with the exception of the first segment which was shortened at the beginning it is unedited. Even this slight touch of hand created a vastly different atmosphere.
I find people so fascinating I could watch them for hours. I can watch this video many times over and savour the extraordinary micro moments in all these players lives. It prompts me to think about multiple narratives and the beauty of human movement and gesture. I derive such pleasure from the overheard phrase caught in passing and to note the tread of feet on a pavement. Each shoe is interesting, intriguing and significant. The boot with a missing patch at the toe, the clunky patent t-bar shoes and the casual pumps worn on bare feet – they draw me in and delight me.
Each bag or backpack, every gait and fragment of sound seems important and yet fleeting. That is their beauty. They wash over me creating waves of delight and sometimes hilarity. The things people say to one another in casual conversation as they walk together from A to B are often funny, perhaps because they are without context but also because they are so revealing.
For me people watch is probably as good as reading poetry or listening to a symphony. I’m astonished at how rarely people in motion collide. They move quickly and with infinite variety. Viewed abstractly and en masse it is extraordinarily graceful. You can tell a lot about emotional tone and emotional states from people watch and this too is endlessly fascinating.
I feel engaged, connected and energised.
January 5, 2016 § Leave a comment
Marie Lund, Loads 2014, concrete and polyester. Photo by Andy Keate
This is blog post about making changes that enable. Sometimes the changes are forced or counterintuitive. I’m enjoying thinking about how transformative some changes can be in enhancing our ability to function and in altering negative self-image. I’m inspired to write it by reading Ysette Guevara’s blog From job crafting to life crafting.
Something new is happening in my life – I have become backpack woman. This is a direct result of losing the family car just before the holidays and deciding not to replace it just yet. We’re trying out car-free living in a city which is accessible on foot and by bus.
It took a little while to work out how to manage my day and still be able to get to the pool for a swim before heading to work at my studio. I need to swim to stay regulated. Without it my sleep patterns quickly slide impacting seriously on my ability to function.
Thus I need to be able to carry both swim gear, laptop and other essentials efficiently and without creating neck and back pain.
A bus key and a well designed backpack are proving to be two revolutionary purchases. Seemingly trivial they are actually transformational. For the first time in decades I’m feeling more connected to my environment and freer.
The car was undoubtedly freeing in other ways but also a trap. Hugely comforting in winter and essential for some journeys and for the period in our lives when our children we small and we needed to accommodate some serious sensory issues. The car was our comfort blanket but also the creator of bad habit and a boon to disorganisation.
I am coming to realise that without the car I am a better planner. No longer able to throw my kit into the boot or simply run the car to the shops when things run out I think my options out more carefully. I’m arriving at alternative solutions, which are different and seem to work well.
Ordering groceries online is a major boon. I can check what we need against the cupboards and fridge as I click. It’s hugely relieving not to have to supermarket shop anymore. I order mainly cupboard goods and top up fresh items as I need them on passing through town.
Travelling by bus means I now move in straight lines – the bus routes are all direct creating a triangle with points south, north and east of the city. Car journey’s were meandering circuits of one way systems and a constant chasing of the clear route avoiding traffic and roadworks. The difference is extraordinary in terms of sensory load. Driving and being passenger also can’t compare on this score.
Of course you give up certain agency with buses – you have to wait and sometimes in the rain but you don’t have to worry about parking, refuelling or traffic restrictions.
The backpack is also proving to be a revelation. I’m probably as ever late to the party here. What have I been doing all these years with a cumbersome collection of handbags and totes?! A well designed backpack in which to carry all the vitals you will need for you day may not be fashionable or too stylish – though mine is inoffensive and compact – but it’s effect on the body is too good to miss.
Walking is entirely different when you have a well distributed load sitting on the right part of your back. Arms are free to swing and there’s no constant hitching of straps. More importantly still no cricked neck or aching arms. The small of my back isn’t complaining either.
There’ll probably come a moment when I miss the car – circumstances may change and we may find we need to reconsider our decision – but I hope I’ll hold onto the positives nonetheless. This period is about pausing and observing what happens when you make a shift in lifestyle habits.
I’m not as hopelessly disorganised as I feared. Organisation happens differently for me and I’m good with online, with less baggage, with straight lines and greatly benefit from the physical connection with my environment that walking and bussing bring.
I summarise it thus. Simplify and connect. Interesting to consider that sometimes what we think of as conveniences aren’t.