Switched Off? (Autism and TMS).

March 25, 2016 § 13 Comments

 

STU_1954DPP_001.jpg

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.

 

Advertisements

Tagged: , , , , ,

§ 13 Responses to Switched Off? (Autism and TMS).

  • Perceptive and sensitive, as always. From what I know of the genetics, because we all have autism in our genomes, there is no ‘disease’ to be cured, literally. That’s where I’m going with my artism (r intentional) and writing…:).

    Liked by 1 person

  • alexforshaw says:

    My reaction is one of disquiet; I see parallels between the changes John describes and a friend of mine who suffered traumatic brain injury in a skiing accident. The thought of my mind being altered so that I process sensations and emotions differently frightens me immensely: I believe that I would no longer be the same person, and I have to admit that I’m rather comfortable in my familiarity with my own mind.

    Like you my reservations centre on the obvious potential for abuse of therapies such as TMS when autistic traits are seen as defects to be cured instead of differences to be accepted and celebrated for their distinctive character. Neurodiversity is a light of hope for me against a background of arbitrary homogeneity.

    Without differences nothing new arises: there is no invention or creativity. I prefer to let our brains dance to our own distinctive rhythms and not have imposed the steady beat of so-called normality.

    Liked by 2 people

  • Hi Sonia

    Thank you so much for this much needed and hugely important blog!

    You have raised such serious points which I feel are being largely ignored.

    Robison holds the title of Autism Consultant which can lead to parents of Autistic children posing an interest in TMS.

    His ‘views’are influencing vulnerable people!

    An Autism Consultant should not promote unregulated and unproven products/Treatments.

    Robison has a responsibility holding such a title and I am outraged at the lack of concern Robison has when questioned about this serious issue.

    I have already read many Comments from parents praising Robison who are now going to seek TMS for their Autistic children.

    TMS is not Regulated or Approved as a’Treatment’for Autism.

    A Harley Street Clinic spoke to me and said TMS is used for Adults only to treat Severe Depression.

    TMS side effects include Seizures,Headaches,Synscope, Hearing Loss.

    A 5 week TMS ‘Treatment’ costs 10,000 Euros!

    It’s a new Quack ‘Treatment’for Autism and a very profitable one!

    Please read my Blog I wrote regarding this matter in link below.

    Right now in the US they are offering this dangerous unregulated and unproven TMS to Autistic children as young as 3 years old!

    It is Unethical and it is Experimentation on Autistic children and adults.

    Fiona O’Leary

    ART Autistic Rights Together

    Http//autisticrightstogether.ie

    Liked by 2 people

    • soniaboue says:

      Hi Fiona – TY. I have read your post too. I think at best Robison is unwitting in his promotion of TMS. I try to be generous, but agree that the TPGTA interview is much more cautious than his videos and the titles of his promotional material suggest. It’s all going to be red rag to a bull for the autism cure lobby. We will work for neurodiversity with all we have. Sonia

      Liked by 1 person

  • Reblogged this on bunnyhopscotch and commented:
    This is important. But I have no words. Sonia says it brilliantly. Here.

    Liked by 1 person

  • Patricia says:

    Reblogged this on Spectrum Perspectives and commented:
    A balanced and sensitive commentary

    Liked by 1 person

  • soniaboue says:

    I received this reply in response to my blog post from John Elder Robison on FaceBook,

    John Elder Robison: Sonia you have some good insights, for reading just the interview. Nothing in my book says “autism cure.” As this treatment technology develops, will parents jump on it for kids? Probably, and that is why we should start the ethical discussion now.

    Your initial read is that you would not want to try TMS and I have no issue with that. But your sentiment is not universal. Everyone in the studies in my book was there because they wanted to be.

    Your idea about changing society is noble, and I agree with you, but this is not a book about that. It’s a book about changing ourselves – something we choose to do or not do as individuals. You express a concern about parents making this choice improperly for kids, and I agree as you will see in the book. But that does not mean it should not be discussed. If we want informed parents making better decisions that is the way to bring that about.

    TMS is a very powerful neurological tool. The way it changed emotional insight in me – whether you want such for yourself or not – is striking. And it is a generalist tool, meaning it can treat many things.

    You already have TMS clinics delivering proven depression therapy. Protocols are in review to treat some aspects of intellectual disability, anxiety, addiction, and epilepsy is coming. In that context the experiments I took part in are almost a side note; yet they show the power and potential.

    Would you have us turn away from all that in the notion that we don’t want those things done to children? I don’t think the answers are so black and white, and my book discusses them extensively.

    We can’t stop scientific progress but we can guide it.

    Liked by 1 person

    • Anna says:

      I totally agree with & support John Elder Robinson’s point of view as expressed in this comment. I was thinking something along those lines too when I read your post, although I could not quite put it into words, but this is well put. (I too have read the interview, but not the book)

      I’m not sure if I would chose the treatment for myself, if I was given the option – maybe I would be scared of the risks and of it changing things I like by myself, but maybe I would do it, if there was a chance I would understand people better, perceive more of the shared world (for a little while), open up an off limit dimension of life and understand better how the social world works. Maybe just out of curiosity. But I think my isolation is not severe enough (anymore) to make it worthwhile – I wouldn’t want to risk a significant change in relation to my husband, for example. But if for someone else, it could maybe help open up the social world to understand, and make life richer and more worthwhile all the inevitable suffering by enabling the person to understand emotions better and perhaps create deep, emotional connections to others for the first time… then that is a good thing. In any case, I see absolutely nothing wrong or unethical about adults pursuing this treatment option for themselves, and it is excellent that John Elder Robinson has written a book about it and that way provides insights about the benefits and personal costs it has had for him, so other people can make their own decisions.

      Like

  • soniaboue says:

    Hi Anna,

    Thank you for your comment. I think the main issue is John’s standing in the community and immense power to influence parents (not adults so much) in believing they can cure their kid’s autism with TMS. Adults are free to make such choices if they wish, of course. I feel JER makes a very rational and logical argument but is in complete denial about his influence. Even “Switched On” as a title is inflammatory – red rag to a bull for the cure lobby.

    Hence the anger and upset of many around this issue, who believe that self acceptance is the way towards societal change. Why be so pessimistic about the powerful movement we have growing around the idea of neurodiversity? Educating people about autism and it’s many benefits involves no risk to the individual and promises to make the future better for all of us, not just autistics but NTs too. Autism is a rich part of our culture and heritage as human beings. We need us all.

    Sonia

    Like

  • Sonja says:

    We have so much to learn about ourselves and what being ND can offer society/culture/being human, before ‘switching on’ turns off what we are only just beginning to understand.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

What’s this?

You are currently reading Switched Off? (Autism and TMS). at The other side.

meta

%d bloggers like this: