I don’t have autism, but in my life I’ve encountered many people who do. On one level, the different ways the human brain can function fascinate me, just as the shoddy science that goes on in this field infuriates me. On another level, some of them, at least, are just my friends.

Shanti is the closest friend with autism I have. She’s high-functioning, smart and funny and she blogs at Platform 25. We’re gig buddies sometimes (you should hear about our adventures at Bob Log III). She’s a talented photographer and a fellow science and science fiction geek. We have a lot in common and we’ve talked a lot about autism as well as many other topics.

Our most recent conversation was on Facebook and Shanti initiated it by asking me about Communication Shutdown. Even though I don’t have autism I wanted to blog about this, and reproducing a conversation (ETA: with permission!) is on one level a very lazy blog post. But on another, it’s perfect. Because it just proves the point that we agreed on. So here it is.

Shanti: What do you think about Communication Shutdown? I think it’s good to raise awareness about autism and have more money for educational services but I’m not sure about the whole ‘cure autism now’ thing. I’m all for curing severe autism because the parents go through so much and services are poor, even in today’s society…. But it does make think that people think that autism is only negative. Even in severe autism they have their own talents.
Then again it does give me a lot of issues. But without it would I be into photography/ physics/ story writing/ astronomy / art at the intensity that I am? No. Everyday I learn something new and that’s great. Then again I do have that ADHD thing.
I think there should be more awareness for autism and unemployment. How about a ‘give your job to an autistic day?’

Rivqa: Well… I see this type of campaign as trite – how can an NT possibly have any inkling of what it’s really like? Not using social networks may be a modest sacrifice, but it wouldn’t give me insight into the communication difficulties that …people on the spectrum face.

As for raising awareness, I’d question the value of that really. Autism is a well known condition now; education about the reality of it is needed, yes, but again, an event like this won’t add much to that.

I agree that the issue of a cure is sticky. It’s also unrealistic for a complex range of conditions and I think it would be better to focus on treatment that doesn’t rob people of their individuality, but that helps them function better. Education for broader society, better services, and high-quality research (Wakefield can shove it).

I think this is exactly what you’ve identified in yourself: there are the good bits of high-functioning autism, and there are the challenges. Employment is a really good measure of function, and that’s far more important than messing with people’s neurons.

Shanti: Also, autistics use social networking to better communicate.
So, you’re more towards ‘Education not Eugenics’ too? I think on Nov 1 we should change our status to that. I’ve got some good material on Eugenics in the 1920’s and not just from… Nazi Germany.
I think if an NT wants to understand what it’s like to be autistic they should lock themselves in their room and not talk to anybody. Then they can try to amplify every sound. Then rub sandpaper all over their skin.

Anyway, I got only 2 hours to find the Andromeda galaxy.

Rivqa: I am, but not in a way that sugar coats what it means to have autism, especially severe autism. Difference is OK. Suffering isn’t.

Take some pretty pictures of Andromeda.

Shanti: Totally agree. I’ve also talked to people on the severe non-speaking end of the spectrum to see what they think about it. One is content to sign or use a sort of net book to communicate. She doesn’t think she’s missing out on being social b…ut she has extreme meltdowns and tactile sensitivity. And I hate my tactile sensitivity and my short tempers. But what I go through isn’t as bad as what she goes through.

I can’t photograph Andromeda. I need more pro equipment but it was good to see it through my telescope, as well as a nebula and Hartley’s comet.

Rivqa: Yes, obviously people are going to want different things. I don’t think any movement should force a cure (if it even existed) on anyone who didn’t want it. But I also don’t think a movement should prevent anyone from taking one if they wanted it.

One day I will visit your neck of the woods so you can show me stuff through your telescope.

Shanti: Yes, you must. And Tania too.

Private universe

There’s been a fair bit in the news about autism recently.

I’ve always been fascinated by this disorder. The MMR vaccine scandal has been interesting to follow as an example of below-par science, and poor understanding by the public of the science. To me, this is just a symptom that science education and mainstream media science reporting needs some vast improvement.

But the main reason is probably that I know so many people on the spectrum. I grew up knowing a family in which all the boys had quite severe autism and have since met others with autism or Asperger syndrome. I always wondered: What sort of place could these boys have in a world where communication is vital? When you “have a different sort of internal thought” that in some cases leaves you completely dependent on your family or other carers for your entire life — what does it mean? What does it tell us about the human brain? Is it really a disorder, or just another state of being?

From that last article:

With autism diagnoses rising steadily, talk of an “epidemic” and a growing search for a cure, Roy feels threatened. “I feel stabbed when it comes to ‘curing’ or ‘treating’ autism,” he says. “It’s like society doesn’t need us.”

Many autistic people are starting to agree. They have had enough of being treated as a medical problem, arguing that autism is not a disease that needs to be cured but just a normal part of human diversity. This emerging “autistic rights” movement hopes to launch an international campaign akin to Gay Pride, encouraging autistic people everywhere to embrace their “neurodiversity”, and persuading wider society to accept them as they are…

Carina Schmidt’s son has autistic disorder and requires round-the-clock attention. His condition is so severe that he required a 10-month stay at the Kennedy Krieger Institute to break some of his self-harming habits. She is adamant about doing everything possible to help her son, who now lives in a group home in Rockville, Maryland. She also supports the development of prenatal tests for autism. “If my son could be cured today I would say ‘yes’,” she says. “My family has suffered like there is no tomorrow – that’s why we choose to have no more kids.” … Schmidt says that she will continue seeking help for her son. And she is sure he wants her to. “I can see my son wants to be normal,” she says.

There are no easy answers here. But I think the research being done now is fascinating and exciting. Even if people with autism don’t want a cure, this research goes to the heart of what makes us human: our complex, intricate, amazing brains.