Saturday, 10 September 2011

It's Time to Change the Negative Image of Autism

It’s time to change the negative image of autism.

We see it everywhere – anywhere autism is mentioned you can almost guarantee, if it’s not written by autistics themselves, then the image of autism is overwhelmingly awful. It’s a ‘tragedy’ and a ‘burden’ on parents, or a ‘monster’ which ‘steals’ children away and turns them into cold, unfeeling automatons, spinning or flapping objects and ignoring people; it’s  something that should be ‘cured’ or ‘therapied’ away, gotten rid of, by whatever means possible, and as fast as possible. And the picture of adults is in some respects even worse. We are either totally non-existent and hence invisible, or we’re ‘institution material’ - little better than zombies to be ‘tidied away’ somewhere out of sight of ‘normal’ people, pitied perhaps, but never the equals of those ‘normals’. Or at best, we are personal-hygiene-challenged computer geeks, with zits and zero social skills, necessary perhaps but again, hardly fit company for ‘normals’.

As I’ve mentioned in a previous post, this is what my friend John Greally calls the belief “that ASD is something to fix / therapise / eliminate / exterminate.” Furthermore, he comments, “If I am broken, then lay me down, drug me, benefit me, patronise me, glint at my least achievement and parade me. And by existing standards we are all broken.”

Compare this to, for instance, the current approach to mental health. Paula Jessop, another aspie friend, has commented that people she talks to in the mental health field are amazed at the treatment of autistic people. They have said to her that autistics are in the position that people with mental health issues were in some twenty or thirty years ago, of being ‘acted upon’, rather than being encouraged to be in control of their lives/condition. And there are certainly many similarities between the old and often harsh treatments (shock treatments, incarceration in mental asylums, ‘zombie’ drugs, etc) once given to mental health patients, and the ‘therapies’ now being inflicted on many hapless and helpless autistics.

Remember those mental health ‘know me before you judge me’ ads? And John Kirwan, the ex All Black and hard man, talking about his depression? Perhaps we need a similar set of ads, and/or some prominent person to come forward and tell the public – we are not Bad, Wrong, or Retarded. We are simply Different.

Because the outcomes of the ‘broken’ or ‘deficient’ viewpoint can be, and all too often are, catastrophic. Children being dragged through harsh ‘therapies’, which can involve physical violence, punishments, denial of food, denial of stress-relieving stims or suppression of even the slightest ‘autistic behaviour’. All sorts of weird and not-so-wonderful ‘treatments’ inflicted on their young bodies, which in some cases have even killed autistic children (better dead than autistic, some parents seem to believe). Parents being told that there is no future for their child, that their child will never love them back, and suffering agonies over the diagnosis. Or spending fortunes on those therapies and treatments, exhausting themselves and their bank accounts in the process, or spending their days fighting ‘the Big Bad Enemy’ of autism. Some of those same parents talking in front of their children about how ‘terrible’ autism is, how much of a ‘burden’ it is, and how they want to ‘get rid of’ the autism, at any cost. Autistic children growing up knowing that their parents reject the core thing that defines who they are. Young autistic adults who refuse to identify with autism, even if it means they deny themselves support and what little services exist for them, because they have so thoroughly absorbed the ‘autism is bad’ belief. Or adults who do accept their autism, but spend their lives feeling bad about themselves, and wanting to be somebody else – anything else, but autistic. And yet other, older adults, who have managed to stumble through decades of adult life somehow, always knowing they are ‘different’ and anguishing over it, but never thinking to identify with autism/Aspergers, because, well, it’s those ‘weirdos / geeks / retards’ over there, right? Not them. Rock-bottom self-esteem, self-harming, depression, suicides, hospitalisations, stress-related physical ailments, high rates of unemployment or under-employment amongst adult autistics, and more. And more. Wasted talents, wasted lives, wasted money, wasted potential.

Demonizing the autism helps no-one, not the parents, not the autistic children, not the adults they will become, or the adults that already exist, nor even society in general. We have real talents and abilities that could be utilized for the benefit of all, which are being ignored. Instead of being considered a problem, we could be seen as a resource and opportunity.

This isn’t about denying the real difficulties we have, or the difficulty parents have in raising autistic children, especially the more ‘severely affected’. Rather, it’s about affirming that the image is wrong, not the autistic person. That to reject the autism means rejecting the autistic. Let me repeat that, so there is no misunderstanding. Rejecting the autism means rejecting the autistic person. Anyone who rejects their child’s autism, or their own, rejects the child, or themselves. Autism is not a ‘layer’ that can be peeled off to reveal the ‘real’ person underneath. Nor is it something that has ‘stolen’ your ‘real’ child. It IS the real child – or your real self. And it’s not bad, mad, a tragedy or a monster. Unless someone makes it into one, in their minds. It simply is. A different way of being, but not necessarily a lesser one – again, unless it is made so in someone’s mind, and then in their lives.

Perhaps we need our own ‘autistic pride’ movement, similar to that of the ‘Gay Pride’ or ‘Black Pride’ movements of the past. Certainly, the time seems right to push for more realistic images of ourselves in the media, to ‘come out’ as autistic whenever possible, to get the facts about what it’s really like to be autistic ‘out there’, to the media, the justice system, health professionals, the education system, etc etc. Indications are that at least some are willing and indeed even eager to listen and learn. I won’t say we have nothing to lose, that would be foolhardy, but haven’t we’ve suffered enough? Hasn’t there been enough pain, enough trauma, enough of everything?

So let’s do it. Let’s get out there and do whatever we can, in whatever way we can, to change how autism is portrayed, to put an end to those harmful negative images. I believe it’s the single most important and liberating thing we can and need to do, for all our sakes.

1 comment:

  1. This was a great post and I fully agree with your viewpoints!

    I think the key is to identify the areas of deep skills and interest (they exist!), and heavily build upon these in creating something unique. I am currently working with the Norwegian startup Pixellus, which is a specialist company in digitization and restoration of images, staffed with people having Asperger. We go live now in September, initially with 3 people + management team. Given that they all share strong interests in photography and image editing, I am certain that nothing will stop these people from reaching world-class skills within our specific business area.