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 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