Wednesday, 17 October 2012

It's not an alien life-form, it's Asperger's Syndrome

So once again, Asperger's Syndrome is in the news and the day after the day before, the world's media* seem to be putting all their least-qualified people out there to discuss it.

I can just imagine the phone calls between news editors when the story broke yesterday that Home Secretary Theresa May had blocked the extradition to the United States of Gary McKinnon, a British man with Asperger's Syndrome who hacked into Pentagon computers seeking to prove the existence of aliens, then spent ten years fighting not to be sent to an American prison for life.

The call will have gone up across newsrooms and television studios in the land:
Editor 1:"Quick, we need something on Asperger's Syndrome."
Editor 2: "Let's get X to do it."
Editor 3: "Does he know anything about Asperger's Syndrome?"
Editor 4: "Does it matter?"
pause
Editor 5: "I'll give him a call..."

Maybe I'm being harsh. But how else to explain the absolute blinders we've had today, from Matthew Wright on Channel 5 blithely proclaiming half-way through a phone-in: "I am horribly ignorant about Aspergers" (you didn't think, after yesterday's news, to do a spot of reading last night, Matthew?) to Jeremy Vine gravely intoning in tragic voice at the end of a Radio 2 discussion on Aspergers about "sufferers" of this "cruel syndrome." Eh? My daughter doesn't suffer from a cruel syndrome. She suffers from the lack of understanding and compassion of others. Even the sensible Independent newspaper ran a description of Aspergers which said it "disrupts something that is core to our being human." Pardon me? I don't think my daughter is less than human. But I suppose a discussion of cognitive versus emotional empathy in people with Aspergers would be too much to ask for..

Come on, I hear you say, you didn't really expect the media not to sensationalise this, did you? Especially when McKinnon's Aspergers was clearly presented as the reason not to extradite him. Well, maybe. But I don't believe (and maybe I'm reading this wrongly) that McKinnon's Aspergers was the reason he won his case. I believe he won his case because he was diagnosed with depression and that his diagnosis of Aspergers contributed to this, to his extreme anxiety that being sent to the United States would mean the death sentence for him, which in turn contributed to his depression, which fed the vicious circle in which the poor man has been bound for the last decade, resulting in him becoming extremely vulnerable. Thus the argument that being sent to the United States would contravene his human rights.  Incidentally, I think there's also an argument that McKinnon's Aspergers diagnosis backs up his claim to have been looking for extraterrestrials during his hacking adventure, rather than seeking to expose U.S. military secrets. People with Aspergers have obsessive interests which they will follow to the nth degree, often unaware of how it may look to outsiders, and it is easy to understand that McKinnon, intrigued by what he thought was a lead on aliens, would have followed it wherever it went, regardless of big red signs about national security. Though that would have been one for a trial defence, which clearly he doesn't need now. Though interestingly, another British man who has Aspergers, who goes by the name of Syed Talha Ahsan, does need a defence case after he was extradited earlier this month to America on terrorism charges, regardless of a similar psychiatrist report that he was also a suicide risk. Which throws up a whole other series of questions.

But in McKinnon's case there have been two very disappointing conclusions drawn by the media. One is that he "got off" because he is disabled - to whit, he has Aspergers, and is clearly not in his right mind. (There were worrying ripples of this when it was mooted that Norwegian mass killer Anders Breivik might have Aspergers: the overwhelming response seemed to be "oh well that explains it.") The other is that Aspergers defines the individual to the extent that there is no room for anything else. We have seen this happen increasingly as the discussion about autism and Aspergers widens. I am glad the conversation is taking off and relieved to have seen this happen in recent months, but it is tooth-grindingly frustrating in the plod towards greater awareness to have to go through this dense dramatising first, these black and white, unsophisticated pronouncements. "Oyez, Oyez, Asperger people have a VERY SERIOUS ILLNESS and are VERY WEIRD AND DIFFERENT. And, by the way, THEY ARE ALL THE SAME.

No, no, a thousand times no. We are glad, o Gods of the telly and newspapers, that finally you're talking about a condition which is exploding among the global population and which, frankly, you're already way behind on. Rain Man was made in 1988, don't you know. But come on, folks, you've been given a fantastic opportunity here to explore what autism and Aspergers means and judging by today's coverage, you've fluffed it.

People with Aspergers are different, yes. Weird? Well, how do you want to qualify that? They're no more or less weird than the rest of us -- you, who loves Zumba so much you go to classes five times a week, or you, who loves those Star Trek films so much you watch them back to back, or you, who love gardening so much you've filled your entire garden with that particular plant, or you, who have that favourite chair to watch TV in and feel a bit out of sorts when the wife gets it ...

The truth is, autism is a spectrum condition. I think we are all on that spectrum. In the UK it is estimated that 1 in 100 people have autism, so most of us either know or love or look after someone with autism. (If you don't know anyone then maybe, just maybe, it could be you.) People with Aspergers are on that spectrum. Some characteristics of Aspergers are the same. Many, many are very different. Ask a group of parents of children with Aspergers about their experiences and they will all tell you different stories. And different permutations of the diagnosis are coming through. Just as we start to talk more widely about autism, so we have more related behaviours to discuss. PDA: Pathological Demand Avoidance Syndrome, anybody? How about PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified?

I'd love to come to a neat conclusion for you all here. God dammit, I'd love to come to a neat conclusion for myself here. (It is after all, what I'm trained to do, and the last few years floundering about hasn't been much fun.) But the truth is, there isn't one. I'm no expert in this. I've lived three years with my daughter's diagnosis and in that time I've learned a lot. I've also learned how little I still know. It's an attitude I'd recommend to anyone planning to write or talk about this subject any time soon.


*disclaimer: I work as a journalist. but sadly no-one asked me to write about Asperger's today.

If you would like to help me raise awareness of autism, please click here

If you would like to read our book, please click here


3 comments:

  1. My cousin has Aspergers, as was evident from when she was very young. I am also strongly suspicious that another cousin of mine also has it, although he was never diagnosed, largely BECAUSE he doesn't "suffer" from this "cruel" condition. While his interpersonal abilities are slightly odd, he also has no need for human contact, so his difficulty making friends and so on has never actually caused him any psychic grief. He goes on vacations on his own, is completely uninterested in dating, and is just... happy.

    I am convinced that the character of Sheldon on The Big Bang Theory would make an excellent media-style case if they would only just label him as Aspergers, because he really fits the bill in a lot of ways. I think that would make a huge contribution towards acceptance of the Syndrome among the general population, because everyone loves Sheldon, despite his weirdness.

    ReplyDelete
  2. I might be biased ;-) but I consider my 12 yr old Aspie son much more interesting than his classmates.

    Re the recent news headlines I was saddened that no one seemed to bother to consult anyone with expertise in Aspergers and they were on a par with my son's peers who think it's a "weird disease" - so much for maturity and common sense.....

    ReplyDelete
  3. There aren't all that many people with expertise. Even some of the paediatricians and clinicians who work with aspergers day in and day out make really basic mistakes. Maybe if they spoke to a parent or two they'd get a bit further forward.

    (Couldn't consider removing captcha could you? Nightmare to comment from a phone.)

    ReplyDelete