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 22, 2016 § 6 Comments
A photograph taken several years ago for my kids #autism
I’m a diagnosis baby.
It’s just over two weeks ago that I made a journey to the Lorna Wing Autism Centre in Bromley, to probably the most transformative encounter of my life.
I’ve crossed a definite line. It’s true that I was always me. I have always had Asperger’s Syndrome. But it is also true that I didn’t know this until now.
SO it’s the effects of this knowing that I’m living with, and which interest me so.
For instance, because I am autistic means I can have so both at the beginning and end of my sentence.
It also means that pronouncements about autism with even the most minimal whiff of a negative elicit a stronger reaction. Before diagnosis, I understood that ableist words were hurtful and would feel anger and alarm. Now I am hurt. I FEEL it to my core.
You, whoever you are, are talking about ME.
A juxtaposition of cancer with autism (even when you think you mean well) hurts me. Experiments on mice degrade me.
I’m in another country.
Another thing I notice is my sudden and complete repulsion for the diminutive of Asperger – “aspie”
I appreciate others like it and use it, but for the record it is not for me. Michael Scott Monje Jr has written about this in a brilliant blogpost called Don’t “Aspie” Me, so suffice it to say that I find it belittling and it also makes my toes curl. A sensory no-no and conceptual faux pas.
Knowing I am autistic means I no longer have to try to wear bright colours (though intense Summer days sometimes make this possible), and that I will never again buy a t-shirt with horizontal stripes. Jaunty and attractive as they may be on a hanger, I now RESPECT that they will cause violence to my eyes when I worn.
I am at peace with this sensory dissonance between my love of colour and pattern in art and nature, and what I can tolerate in the visual field that is my own body. There are two geographies – at last I get it.
I am also joyful and assertive, believing that I am not dysfunctional, I am radically alternative.
The depth of my joy is surprising to me.
These are my notes from within.
March 17, 2016 § 4 Comments
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…
March 15, 2016 § 7 Comments
In my time I’ve deleted many posts. Sometimes we blog, tweet and status update in haste.
I’m also hyper aware of the corners of the internet where spats are a click away, and it can certainly be an unforgiving environment.
Yet I’m compelled to tackle the following analogy. I don’t want to identify the author who I feel just hasn’t thought it through. It is my hope that these thoughts and observations might come to them gently via the net.
Okay so here’s the paraphrase:
“People don’t suffer autism, epilepsy, cancer or depression. They have those conditions & suffer ignorance.”
The idea is that ignorance is the bad guy is fine, but you can see the problem. It’s the muddling of condition with disease that’s seriously out of whack.
It’s not accurate for autism and cancer to appear in the same grouping as conditions.
I’m sure the character limit on tweets is partly to blame, but underlying it is a conceptual blunder, which helps neither autism nor cancer. I don’t want who I am to be linked with cancer in any context.
I wish that people would think more carefully about how these kinds of juxtapositions feel.
But aside from how I feel when I read this kind of proclamation is the association it engenders in people’s minds of autism with disease and cure. This is ignorant and also dangerous.
In my recent diagnosis of Asperger Syndrome my report states,
“The syndrome is not an illness or medical condition.”
I am happily and healthily autistic.
Gracias. Over and out.
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.
March 5, 2016 § 16 Comments
I’m only planning to do this once. I am finally at the end of the road of all my doubts about my neurology. Yesterday I was given a diagnosis of Asperger Syndrome by Dr Judith Gould of the Lorna Wing Centre. For those who don’t know, Dr Gould worked with Lorna Wing to develop the concept of autistic spectrum and is a lead expert in diagnosing autism in women and girls.
It was life affirming and delightful. Dr Gould is an incredible human being and I wish there could be endless multiple Judith Gould’s peopling schools and colleges and work places across the world, but she is of course unique. I feel extraordinarily lucky.
Many people have written about the moment of diagnosis, and so I feel I don’t need to. I don’t want to risk falling into cliches and make my own experience as flat as the screen I’m writing on. I want it to stay alive in my mind. The details of this encounter are private, though I wish to be public about my neurological status.
The point is that autism can be disguised or “masked” over a lifetime, as some autistic people learn to socialise and do it incredibly well. I’ve seen this termed “passing”, and the mechanisms by which we learn to do this are, in my experience, entirely unconscious. Frankly, up until most recently I had no idea that I was passing for a neurotypical person – I thought I was one.
I thought I was a neurotypcial person who was a lover and brilliant observer of people, but a bad friend because I’ve needed so much solitude and recovery time from social contact.
But I am not a bad friend, which is hugely relieving. I love my friends and am endlessly fascinated by people. Friends who’ve been disappointed over the years – if I’ve seemed distant or endlessly unavailable – this is why. It’s incredibly hard for me to stay connected, and those who’ve stuck with me are loved without measure – I know that more often than not you’ve had to keep things going.
And I would add that it is indeed possible to love people in so many ways, and to keep them in mind, as present as if they were with you, even when you haven’t seen one another for many years.
Now that I am formally diagnosed I will be working again to raise consciousness and acceptance for autism. It’s simply another way of being human. I have no idea what form this will take, probably just being me, fully and at long last.
March 2, 2016 § Leave a comment
This video was made in the throes of my application to Arts Council England and as part of a more serious conversation about the difficulties of access for neurodivergent artists. I felt it was time to let off a bit of steam. Feedback so far is that it is hilarious.
“51 second of joy” Brent White.
Also part of a conversation about how neurodivergent people reclaim spaces in a neuro-normative culture.
NB. Not for those who find eye contact difficult.