Wednesday, 27 October 2010

Biting the silver bullet

At the end of a superb and insightful interview in Wired magazine (I urge you to read it if you haven’t done so already), Ari Ne’eman is asked a question that often lurks in discussions of autism: ‘If someone offered you a pill to wake up tomorrow without autism, would you take it?’ His answer was honest and devastating, in the sense that it was a direct assault on the emotions that underpin such well-meaning enquiries. He said: ‘That’s an intensely silly question. How can I draw a line around one part of my brain and say that this is the autistic part, and the rest of me is something else?’
Ne’eman is a 22-year-old autistic man who was appointed by Barack Obama to the US National Council on Disability last December. Not everybody was enamoured with his answer to the ‘autism pill’ question. Some parents attacked him for taking such a dismissive stance to their long-cherished dream of finding a cure for autism. It is a dream that has been enthusiastically, at times aggressively, championed, by campaigning charities such as Autism Speaks, which has ploughed millions of dollars into research into the causes of, and possible medical treatments for, autism. Faced with that kind of emotional input from parents who are gripped by the wish for their children to grow up normal, it takes a fair amount of kind of courage to call their hopes and desires ‘silly’. But if Ne’eman’s choice of words can change the flow of the conversation around autism, he will have performed a great service.
The ‘magic pill’ hypothesis comes up frequently in discussions about autism without anyone pausing to consider what the question actually means. In essence, it presupposes that autism is an alien or hostile force contained within the autistic person that could, if only we possessed the right medical knowledge, be extracted and disposed of at no cost to the host. Autism Speaks' I Am Autism video took this philosophy and tied it to a sledgehammer, addressing ‘autism’ directly as an enemy agent that parents would fight tirelessly to defeat using the irresistible forces of love. Even a serious and thoughtful commentator such as Michael Blastland, in his book Joe (which, again, I recommend highly), takes time out to express the wish that his son could be released from his autism.
In the case of parents struggling to bring up severely autistic or non-verbal children, these sentiments are understandable and hardly surprising. Yet at the same time, you only have to look at the thinking behind the ‘magic pill’ question to see why the idea is so abhorrent to autistic people themselves. It gives a mythical, alien quality to their condition and, by extension, to their essential selves. Or, to quote Ne’eman again: ‘That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That's not reality.’
Taking the more severely autistic of my children as an example, there are two points I’d argue here. The first is that as far as I can see, there is no ‘autistic part’ to Euan’s brain that can be safely removed; nor is it a filter that distorts the outlook of an otherwise ‘normal’ person. It is an intrinsic part of who he is. Suppose for a second that a ‘magic pill’ really does exist. One night, before going to bed, he takes it. The next morning he wakes up a fundamentally different person. The chemicals in the pill have triggered a violent change in his personality that affects the way he sees, hears, feels, interacts with and understands everything around him. His world is suddenly filled with emotions and sensations that he could never directly perceive before. Thanks to therapy, he probably knows they are there and has developed ways to accommodate their presence, in the same way that a blind person learns the layout of the furniture in a room. But now he has to cope with them in the raw, through the strange, intense contortions of people’s faces that now scream for his attention, along with a whole range of nuances and gestures that the rest of us spent our entire childhoods and early adult lives learning to interpret (and still frequently get wrong). Faced with such an explosion of emotional input, the only reasonable reaction that I can imagine would be a total nervous breakdown.
Secondly, the ‘magic pill’ aspiration, however earnestly expressed, symbolises a desire to relieve the parents’ anxiety and discomfort, rather than the ambition to improving their children’s quality of life. I’ve always declined to join the ranks of parents that vow to ‘fight’ their children’s autism, preferring to negotiate with it instead. Autism is a condition that can be mitigated through therapy, but the person will always be autistic. They may become high achievers, such as Temple Grandin; they may marry, have children of their own and enjoy the company of a (probably small) circle of supportive friends, but their relationship with the world around them will always be an autistic one. The role of the parent, in my opinion, is to see that they don’t suffer for it; the role of society is to exploit their abilities while providing for their disabilities. It doesn’t seem too much to ask.
Much of the protestations on the part of parents boil down to a single sentence: ‘We only want the best for our children.’ This is true: of course we do. But we need to understand that it is not enough to be well-meaning. Accepting autism means accepting there is no silver bullet that will cure our children. We have to understand them from the inside out, to see things from their point of view, to share their vision of the future rather than impose our own, and to give them the thing they really feel the lack of: empathy.


Laura said...

Remarkably astute, and the title is perfect. It is about biting the bullet sometimes.

D. S. Walker said...

I agree completely with you and with Laura. My child has so many wonderful qualities that I would not change for the world.

Clarissa said...

I'm an autistic and I wouldn't take the "magic pill." I wouldn't even take it if I were offered $1,000,000 to do so.

Autistic Dad said...

Thanks for your comments. Clarissa, if it's not impertinent to ask, what did help more than anything when you were growing up?

diane said...

I agree wholeheartedly with what you have said so much better than I ever could. I don't want to change who my son is into something that would make me more comfortable. I just want to make the things that are hard for him easier and give him the tools to manage his life in his own unique way.

Rachel Cohen-Rottenberg said...

I found this post through Laura's blog, and it's a great one.

I'm with Clarissa: I wouldn't want to be made non-autistic. I love who I am, though I don't always love the way the world treats me or the obstacles that it puts in my way.

Erica said...

I have Asperger's syndrome. I would NEVER take the "magic pill!"

Why would I ever want to be someone else? That, in fact, is exactly what it would do to me. Autism has made me who I am today. I love myself the way I am. Sure, there are some issues that I deal with that I don't like. However, doesn't everyone have that?

No one person is perfect. But, I'm close enough to perfect FOR ME.

Thanks for such a great post,


jamie knight said...

Autism is me, remove it from me, and you remove the me from me. You have someone else.