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.