Tuesday, 24 November 2015

Comments from Steve Silberman on Neurotribes, our different 'autisms'

It's been a week since Mumsnet invited Steve Silberman to join them for a webchat on his book, 'Neurotribes: The legacy of autism and how to think smarter about people who think differently'.  His book examines the history of autism and looks at why there has been a recent rise in the number of diagnoses. It recently won the 2015 Samuel Johnson Prize for non-fiction and became a bestseller in England just over a week ago.

Honestly I don't get much time to read.  However, I was particularly interested in part of it's review that I read.  It described how the book starts in Nazi Vienna with Dr Hans Asperger.  He downplayed the severity of the newly named syndrome and highlighted highly functioning patients in an effort to save the rest from the Nazis' euthanasia programme. By definition this hid the fact that autism exists on a continuum. The term "spectrum" was adopted some 50 years later by a British psychiatrist.

After our first son was diagnosed with Autistic Spectrum Disorder (ASD), it occurred to me that the spectrum could reach as far as anyone would diagnose.  It's not unusual for relatives of those diagnosed with autism to demonstrate 'autistic traits'.  Expand the spectrum far enough and we would all be on it somewhere.  However, you would only need a diagnosis of ASD when you were at the end of the spectrum that made it difficult to function in society.  Indeed that society simply had a cut off point which most people fit into and it therefore catered for.

Our sons are both on the autistic spectrum, but are wildly different.  Anthony is verbal and attends a mainstream school with a full time learning support assistant.  He is very routine driven and struggles with change and decision making.  David is non-verbal, attends a specialist unit attached to a mainstream school, is fine without routine but really struggles with transitions. Both on the autistic spectrum, but both very different and with different prospects for the future.  Even their similarities can be different. Both have sensory issues around temperature for example.  Anthony is very sensitive to temperature, however, David hardly notices it.  We always have to put Anthony in the bath first - he'll tell us if it's too hot.  David would get into the bath if it was too hot and hurt himself.   It sometimes seems that they are too different to both be considered autistic. Just a few years earlier and I think they may have been given a slightly different diagnosis from each other specifying their place on a scale.

And so like a few others, I was interested in the question posed to Mr Silberman - is it not autism, is it in fact autisms?  Here's was Mr Silberman's response:

"It's important to remember that "autism" is basically a useful social construct (and sometimes not so useful). It's a description of a distinctive constellation of behavior that ranges incredibly widely. But it's not a reference to a biomarker or any other thing that exists outside of the autistic person's behavior.

"That said, I think the evolving wisdom among researchers and clinicians is that there are many 'autisms' -- underlying conditions, with probably widely differing etiological pathways (causes, if you will) -- that produce this distinctive and widely ranging constellation of behavior. I understand that parents of profoundly affected and intellectually disabled children often bristle at the notion that their child is on the same broad spectrum as, say, Temple Grandin. In my book, I write quite a bit about profoundly disabled autistic people, such as a 70 page chapter on a boy named Leo Rosa, who has very few words of expressive language and is occasionally self-injurious. I notice that some people seem to miss the profoundly disabled people in my book, though I talk about them in nearly every chapter. I wonder if it's because they're rarely quoted (though I do quote Leo), or if it's because people would rather talk about eccentric geniuses. But they're there."

Our son's certainly differ widely enough to adhere to this idea of 'autisms' and support the old adage that 'if you know one person on the autistic spectrum, you know one person on the spectrum'. 

There is recognised growth in the number of ASD diagnoses.  I have noticed an increase in 'friendly' services, such as autism friendly viewings at the cinema or theatre, specialised shopping trolleys, autism friendly days at museums and even at toy stores.  Given this I wonder if the part of the spectrum in which individuals are able to cope and function in society will broaden?    If there were 10 autisms today could this be reduced as time goes on? Is it possible with a greater acceptance and expansion of services that one or both of our sons may fall out of the need for a diagnosis altogether?

Undoubtedly I will have to read Mr Silberman's book which ultimately "casts light on the growing movement of 'neurodiversity' activists seeking respect, support, technological innovation, accommodations in the workplace and in education, and the right to self-determination for those with cognitive differences." How much change there would need to be to enable both my kids to participate in society is as yet unknown. If you've read my post 'The hope I see in the kind acts of children' you will know I see signs of a greater acceptance for their conditions and that I have high hopes for their future. 

Links to positive acceptance

2 comments:

  1. Interesting read, the problem lies with subjective and personal take on what constufes as autistic behaviour when diagnosing. Where is the cut of as what if you don't fit into say ten 'autism' profiles does that make you not accountable for a label.
    It is definately food for thought. Thanks for sharing X

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    Replies
    1. Indeed. I guess the cut off as we say is where the affect of a person's condition does not impact on their ability to function in society without adjustment? Isn't s label just a way of understanding oneself and accessing support? Ideally I'd hope that society adjusted so less people felt they needed more support and we're just able to live and function as they were? Great to get your comments, thank you.

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