Discussion of Autism in A Different Key – Errors and Revelations…

neuro

In his latest  article ‘The errors — and revelations — in two major new books about autism’ (http://www.vox.com/2016/1/21/10801846/autism-in-a-different-key) ,Ari Ne’eman brilliantly reviews two very different and distinct portrayals of Autism  within the books NeuroTribes by  Steve Silberman and In a Different Key  by Caren Zucker and John Donvan

As Ne’eman unpacks these differences he’s also concise in pointing out that whilst all of the authors concerned are themselves non-autistic persons, Steve Silberman,  shares a unique key  empathy with  Autistic people.

Growing up as a gay man, he too, felt the sting of having both his worth as an individual and the right to make his own life choices, constantly restrained and questioned by the weight of an inadequately informed  public, whose  opinion over his “condition,” has at times, been to his disadvantage.

His experiences give light to the truth that there are many people, with many differing “conditions” who are forced to constantly battle against the subversive majority, whose misunderstandings and judgements of those who are different, in any way, creates the lifelong sets of discriminatory values that we all find ourselves having to fight against.in one or another.

His empathy for Autistic adults over the fact we are often talked at and about, but never talked too, comes from the genuinely  authentic center of having felt the same way for most of his own life.

Hence his sensitivities toward and awareness of many of the issues facing people with Autism, lead him to tackle both the past and the present conversations surrounding Autism with respect and dignity.at all times.

In this manner, Silberman’s work stands in stark contrast to that of Zucker and Donovan, who discuss the issues surrounding Autism from a much more parentally based, outsiders perspective of Autism.

The problem with this is, as Ne’eman so eloquently points out is that “autism happens to autistic people, not their parents”.

As both a parent to two teens with Autism and an adult with Autism myself, I know that there have been many parents over the years who have indeed broken down the majority of the walls that once prevented inclusion in terms of educational policy and funding, but there are still times when I wonder whether or not it was ever meant to become a system where by every single child with Autism, regardless of how well they can handle it, must, by the dictates of state, be placed in mainstream schooling.

In fact these days, I find myself on the other side of the debate. Arguing instead for the right for a child, teen or young adult with Autism to be able to decide for themselves which form of learning environment they find to be the most comfortable and enjoyable.

 This aspect aside, there can be no doubt that parents have played a vital part in dispelling many of the myths that have surrounded the origins of  Autism, particularly when it came to the debunking Bettelheim’s infamous “refrigerator mother” syndrome.

Yet despite all of the work that they do, one simple fact still remains and that is the fact that they cannot, no matter how hard they try, ever fully experience what Autism feels like from the inside.

Parents  can and do,  comprehend what many of the triggers for someone with Autism are  and they can become very adept at helping their children adopt coping skills and mechanisms to help them during a ‘meltdown’, but what they can never do is actually feel that awful sensation of building pressure, of every raw nerve being heightened to the point where you feel as if you are boiling within your own skin.

And that’s just one of  the key issues that Ne’eman explores alongside the issue of ‘othering’.

Silberman, although also non-autistic, does a much better job of describing the impacts that being viewed as “different” or “other’ has on an individuals self-esteem and their broader life.

Though he may not know what it feels like to constantly experience sensory overload, he does know all too well, what it feels like to have himself and those whom he considers ‘kindred spirits’ , talked about in the media and discussed by  policy makers and the general public, as if they themselves, have no right to either speak or be heard, or even be trusted enough by their own families, to  make ‘the right’ decisions for themselves.

In a very similar way, when it comes to speaking for ourselves and having the right to be heard, many Autistic Adults working within the realms of advocacy, frequently express the feeling that parental advocates, by focusing exclusively on their needs and their understandings of Autism,  were quite literally writing the perspectives of children and young adults with Autism “out of  [their] own stories”.

Thus robbing Autistic Adults and children not only of the right to speak for themselves, but also of the right to be heard and taken seriously when they do.

The right to be taken seriously, to have our views and needs respected and to have our understandings of ourselves honored and validated, instead of constantly having our truths questioned and instead of  being heard, being told things like:

“You can’t possibly have any understanding of yourself and be Autistic at the same time. That just doesn’t happen’.

‘Why do you always look so sad? You should smile more”.

‘Get out of the house and you’ll feel better’

Being constantly told that we’re wrong or mistaken whenever we try to speak our truths or having our facial expressions always read as if they were some kind of social barometer that might give the reader insight as to what we’re feeling, then being blamed when it fails to do so, is insulting.

Please stop doing this.

Try asking us what we’re thinking about instead.

Try believing us when we tell you that we’re not sad we’re just so completely and utterly lost in thought that our faces automatically relax.

This process of relaxation includes our mouths and lips.

And just in case your’ not up to speed with anatomy, it actually takes muscle contractions to create a smile.

So if a person’s face is completely  and I do mean completely relaxed, there will be no muscle contraction, hence no smile.

Also, for those of us who are feeling overwhelmed due to sensory overload, the last thing we need to be told is to “get out of the house’, or ‘be around people’, when what  we really need is peace and quiet and the ability to withdraw into our own safe space.

So please, please, please try and understanding these few simple truths of Autism.

We’re not being stubborn or willful or malignantly anti-social when we insist on the need to have our own space and to take things at our own pace.

What we are doing is being is respectful of ourselves and we wish that others could be too.

In the meantime I urge you to click on this link and read Ari Ne’eman’s  brilliant article here http://www.vox.com/2016/1/21/10801846/autism-in-a-different-key

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10 thoughts on “Discussion of Autism in A Different Key – Errors and Revelations…

  1. I’ve noticed people do that with me- they expect me to just get out more and be surrounded by people even more – when interacting with people and having to run all the scripts required to put forth a “normal” facade is what exhausted me to begin with. I come from a family of mostly loud, extroverted NTs and they don’t get it when I have to drop off the face of the earth from time to time. I’m 47 years old and was diagnosed with Asperger’s (or HFA) at age 35. I still deal with anxiety and sensory overload. I am still vexed by non-verbals and eye contact (sending and receiving.) I have to deal with people at work but thankfully it’s either online or on the phone so I seldom have to deal with people face to face at work. I don’t respond like other people. I have to make a different wiring system work. Being autistic doesn’t make me less of a person, just a person with a different road map. One that really appreciates quiet space.

  2. Elysianhunter, when I had serious anxiety some years ago (albeit partly medicine-related) one of the worst things was people constantly not grasping that in that state, the best kind of ‘concern’ was to be left alone and not asked intrusive questions, or (worse still) told ‘you actually looked fine!’ (Remind me again why their purely external and speculative opinion on my internal experience is remotely consequential, but mine is inevitably of no value?) 😛

  3. ‘His empathy for Autistic adults over the fact we are often talked at and about, but never talked to’ is so true. Once they can start claiming that all autistic individuals form a homogenous, monolithic lump, with no plurality or individual differences, (i.e. the sogenannte ‘autistic community’ which apparently acts and feels as one single organism), they can simplify their task in administrating, regulating and ‘diversity-managing’ us…

  4. If indeed we do actually have feelings, which apparently some of them are not quite sure about 😛 It is a long road, but perhaps some incremental progress towards ‘pluralism’ of neural universes has been made already, albeit slowly.

    1. Yes, progress is being made incredibly slowly. One would have hoped that in this day and age, and with so many Autistic voices now speaking out, that acceptance of neuro diversity would have sped up by now. Not sure why there’s so much resistance towards it. Would love to hear your thoughts on this.

  5. I will tell you my view, although it is something that requires really a longer discussion than I can give here.

    The distinction I make (I haven’t seen anyone else agreeing with it so far) is between ‘neuropluralism’ as a form of reasoned tolerance and critical acceptance, versus ‘neurodiversity’ as a kind of ‘fetishisation’ and ‘celebration’ of ‘neuroplurality’ (i.e. of the plurality of different neural ‘universes’ or ‘perspectives’ etc.)

    I am convinced part of the problem is the slippage between these two ideas. There should be a difference between condescending assimilation and patronizing celebration (OMG let me celebrate your neurodiversity, it would be really boring if we were all the same!) versus a more nuanced, ambivalent and ambiguous ‘acceptance,’ ‘recognition,’ ‘respect,’ ‘tolerance.’

    It’s the slipperiness of the language that partly concerns me. I do not believe that rejection/bigotry versus celebration/fetishization are the only two conceivable possibilities. This is why ‘neuropluralism’ is my preferred notion; it doesn’t lean too much in either direction.

    It’s certainly contentious territory, but I am suspicious of when ‘everybody’ is suddenly in favour of a word. That sets an alarm off in my head. Perhaps one day, ‘neurodiversity’ in the negative sense will be seen as a historical milestone, an important but contingent stepping stone to neuropluralism.

    And so at best, perhaps many people advocating ‘neurodiversity’ are really actually groping towards neuropluralism, after all. The territory is misty, but it is very important to take the risk of stumbling around in the dark, and seeing if the limitations of current terms can result in further advances.

    It takes courage to both see what is positive in current critique, and to recognise the limitations and challenge the existing assumptions, to go even further beyond ‘neurodiversity’ in the sense in which I am using it.

    Sorry for the length.

    1. I think you may well be right Wallace. It’s very similar to the way in which governments claim “acceptance” of children with disabilities by using the policy of “integrating” all children with a disability into mainstream schooling. Many will try and tell you that such actions mean that children with disabilities are being “accepted” because of this, yet the reality is that often their presence is merely being “tolerated”. And there’s a world of difference between being truly accepted as opposed to being merely tolerated. So I think I have a basic understanding of your perspective. Thank you for taking the time to share your thoughts with me. I appreciate it immensely.

  6. Thank you, and you are very welcome. One day, (some months from now), I would like to produce another website which tries to go beyond the various views on autism and disability that risk ending up merely as ‘new orthodoxies.’ Not everyone will agree on what ideas and views risk deteriorating into ‘new orthodoxies,’ but it’s important to let things not crystallize too much, as it were. I can let you or others know later on; that is, if you are interested in writing for or reading such a site.

    Thanks

    Wallace

  7. You’re welcome. I have decided to set the ball running with preliminary preparations. The website will not start for a while, but I now have a free domain (I am afraid that it is not on WordPress though. I use both WordPress and Blogger for different sites). There is an introductory post explaining the ethos, and contact information for anyone interested.

    I’m normally reluctant to post things like this in a comments section, I really am. But I do hope it is appropriate this one time, as it does actually seem to pertinent to the conversation itself.

    Thank you for your discussion, which is encouraging to me. The past two days or so, I have had to think a bit harder myself about the notion of humility, and about the difference between sincere usages of a problematic term versus cynical usages. It would be problematic or even flat-out wrong to consistently take a certain ‘tone’ or ‘attitude’ to particular terms, where it would risk alienating a lot of people in relation to a word itself; especially when ‘behind’ the ‘wall’ of the word itself, there is often actually a lot of common ground.

    This is the link

    http://newdisability.blogspot.co.uk/

    Thanks again.

    Wallace

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