Please sponsor my 5k swim coming up in April and help support Marie Curie Cancer Care, an organisation which provides home nursing care to people with terminal illnesses.

A recent study has suggested that autistic adults who have inhaled the hormone oxytocin do better at tasks that involve recognizing faces and throwing a ball around with others. While the sample size was quite small (13 people!), the study still suggests how oxytocin can help Aspie adapt to what neurotypical society expects of us. Unfortunately, the mainstream media has framed its reporting the story in highly problematic ways: this Washington Post article manages to combine most them.

The story’s headline tells us that a “[h]ormone-infused nasal spray [has been] found to help people with autism” but the lead tells us that oxytocin “can help those with autism make eye contact and interact better with others”. Leaving aside for the moment that the reporter seems to be drawing conclusions somewhat beyond what the study actually suggests, there’s still the issue of how helping the autistic is defined. Helping autistics here isn’t about making them happier: it’s about inducing behavior in them which makes other people more comfortable. That is what interacting “better” means.

Further along in the article, the focus shifts from adults to children even though it the subjects of the study are adults, which fits into a more general tendency to make adult autistics invisible:

But Sirigu was among those who said the finding should encourage more research on the potential benefits of oxytocin itself, especially for children. Administering the hormone soon after a child is diagnosed with autism might help him or her develop more normally, she said.

This shift cannot entirely be blamed on poor journalism since the quote is from Angela Sirigu, who led the study. This move to focusing on children also become a move towards focusing on a “cure”, totally ignoring the perspectives who do not believe that autistic tendencies should be eliminated.

Indeed, the reporter seems to have been unable to locate a single autistic person to ask for an opinion, relying instead on “advocates for families with children with autism” (see how removed from actual experience that is?) including Autism Speaks. Would it really have been that difficult to contact ASAN?

Reporters covering stories about autism need to start centering autistic people, autistic perspectives, and autistic needs instead of considering only what neurotypicals want of and for us.

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I am tired of running into bigotry and ignorance in the poetry world. Tired but no longer surprised when I do.  There is no reason, after all, to expect that any subculture or set of subcultures would avoid the hierarchies and cruelties of the broader world. I just used to believe that poets might pay more attention to their words. The latest instance comes from a statement made by Christian Bök during a Q&A at Kelly Writers House last month, a transcription of which was posted to Harriet Blog. It begins

I think that my poetics makes it viable for me to excuse a whole variety of obsessive compulsive disorders. It’s not Asperger syndrome; it’s not a bug, it’s a feature. Half the battle of being a poet is trying to transform what would otherwise be dismissed as a weakness into a strength, trying to find ways in which something that should fail under other circumstances finds an ecology within which it can succeed.

How nice. How nice that he gets to decide which neurologies are bugs. Even nicer that he then goes on to describe being a poet in terms of making what others see as weaknesses into strengths. Does the differentiation from Asperger’s mean, then, that it is outside of the set of perceived weaknesses that can be turned into strengths, that it is only a flaw? Those of us who actually know about Asperger’s, I mean we who are Aspies, know better. Did he consult with any of us before deciding to talk about us?

Of course, I don’t expect he gave the utterance much thought. I don’t think he had sat down and thought, “ah yes, the difficulty of being a person with Asperger’s is entirely unredeemable.” Rather, this is what happens in a culture in which a trait or tendency has become an easy sign for “something wrong.” The whole autism spectrum is maligned by groups with money, power, and media reach.  I’ve heard self-described progressives use Asperger’s as insult aimed at the Bush administration (because, you know, we Aspies are very well known for our social skills which allow us to lie successfully for period of years).

So I’m not surprised when such things are said. It’s just, you know, poets are supposed to think about words, right? (Or is that me being too literal again?) So I’m disappointed when they say such things and more disappointed when, thirty one comments later, no one has called them out.

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Earlier this month, the New York Times covered a proposed changed to the Diagnostic and Statistical Manual of Mental Disorders (DSM) which would eliminate Asperger’s as a separate diagnosis making it, instead, part of a category of autistic spectrum disorders. To me, the categories used by psychiatrists are of little interest. (I do, however, realize that there are some for whom it matters very much, and I in no way wish to denigrate them or their needs). The DSM, by its very nature, reflects reality as seen by psychiatrists not as seen by the people it’s supposed to categorize. That is to say, I have very little use for it myself, though I recognize that this proposed change would make it much harder for curebies to tell Aspies that they don’t really count as autistic, and that’s certainly something to be happy about.

Still, I’m not going to dodge the questions this proposed change raises about the difference between Asperger’s and autism. Ultimately, I see the former as a subset of the latter and will identify as one or the other or both depending on the context. Certainly, my response to stress is recognizably autistic, but my approach to and use of language seems to have more things in common with other Aspies’ than with non-Aspie autistics. It’s not either/or. It’s not both/and. And wanting to preserve the Asperger’s identity is not necessarily about wanting to maintain privilege or subscribing to some sort of notion of superiority-through-higher-functioning.

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sometimes invisible
in the corners of a party, a pub
is sometimes how I want it
to breathe & to observe

and sometimes how you
ignore my words

but I live on your block
on your street, I’m not
easy to spot
to avoid
funny as I walk

I am autism
and am not dying of it,
will not infect you
if I bleed or kiss you

and I’ve taught your children
English, swimming
they haven’t been taken
they haven’t become
like me

I am autism
and I am in love
with someone who loves
me more steadily than the moon
reflects the sun, and he
is autism too

if I were your child
you might change some plans
you might change your dreams
fine, go ahead and grieve

worry
what will become of me

but don’t fight me
don’t think I am gone

I am autism
and autism is me

are you listening to me?

At the end of this week, I’m moving over 200 miles away from my partner. A visit to see him will require taking a plane—or a train and a ferry. Neither of us can wait for the change. We will be living 4400 miles closer together.

I met Martyn, a Ph.D. candidate at the University of Hull, two summers ago in Liverpool at an academic conference on vampire fiction. At the time, I was on break from teaching English at Shengda College of Zhengzhou University in a rural part of Henan Province. A mugging in Cambodia the following summer would send me back to my hometown of Seattle where I decided to stay for a year to pursue my writing while teaching at an ESL school as a substitute. Throughout all this, we stayed in close touch online, occasionally using the telephone or seeing each other in person, growing closer all the time.

It could be said that we started out remarkably close. At some point during the post-conference gathering in The Everyman pub, our fellow attendees began to think we had met each other before; whether our conversation or our placing our hands on top of each other’s gave that impression is difficult to say.

What is certain is that all of that almost never happened. We began to talk in earnest only after Martyn asked to buy me a drink. That may seem unremarkable, but as a woman with Aspergers and all the difficulties with social niceties that come with it, I always find receiving such gifts uncomfortable, as I never know exactly what is expected from me in return. A friend of Martyn’s with whom he had co-presented that day, however, informed me that this was simply his way: he liked to buy drinks for everyone and would not be happy until I accepted.

“In that case, I’ll have whatever you recommend,” I told Martyn.

And so over pints of SA Brains, a malty best bitter from Cardiff, our bond began to form. We left together and, after some difficulty finding a taxi, went back to my hostel room, even though it meant sneaking him past the front desk. Neither of us had never done anything like that before.

The next day, however, I had to catch a ferry to Dublin (by way of the Isle of Man) where I had already reserved lodging and transportation for a trip exploring the homeland of my mother’s side of the family. We exchanged email addresses and kissed each other goodbye in a black cab. During my travels in Ireland, Martyn emailed me several times, and I emailed him back whenever I had Internet access.

When I got back to China, where I had Internet access in my apartment, the emails became generally more frequent (though we did go through a few slow patches), and we began to chat on Googletalk when our time zones and schedules allowed. Along the way, we discovered a remarkable number of overlaps. Besides the vampires, we share an interest in experimental writing and Jacobean drama. He too has Aspergian tendencies. A few years before we met, we passed through JFK within half an hour of each other, albeit it at different terminals; if I had taken the subway instead of a taxi, we might well have seen each other on the platform, but I had way too much baggage to navigate those trains. Eventually, we changed our changed our Facebook relationship statuses to “It’s Complicated”. (His suggestion, though sending the email that contained the idea terrified him.)

About a year after we met, I planned a trip to Southeast Asia for my summer break. I flew first to Shenzhen where I stayed overnight before flying to Kuala Lumpur. I explored that city’s towers, mosques, and parks for a week before flying out to Siem Reap. There, I spent another week climbing through the ruins of Angkor, followed by a week exploring Phnom Penh before heading to the beachside town of Sihanoukville. I planned to remain there for a few weeks to write, but my trip was cut short when I was robbed at knifepoint on one of the most popular beaches in the area.

Because my passport was in the stolen bag, I would have to go back to Phnom Penh and the American Embassy to get a replacement. Fortunately, I had money and credit cards that I had kept separately, but I still had to get a police report before I left town. In the stress of all this, it was Martyn I relied on. I not only emailed him but also paid a few dollars to call him from an Internet cafe after he gave me his cell number and told me to call him any time. Just the sound of his voice helped me calm down.

When I got to Phnom Penh, however, things turned out not to be as simple as I had hoped. I had a photocopy of my passport, so getting a new one wasn’t a problem. Unfortunately, when I went to the Chinese Embassy to try to get a new work visa, I was told that I would have to return to the U.S. to apply for a new visa even though I had a photocopy of my stolen work permit. In the past, other teachers had been able to obtain work visas in Hong Kong or elsewhere, but this was 2008. The Olympics had brought with them a stricter set of regulations: visas could only be applied for in your country of origin. It would have been impossible for me to fly back to the U.S, go through the visa process, and fly back to China before the start of the new term. Just getting a flight back within a reasonable time frame proved to be a challenge: I ended up flying first to Bangkok and then, after a twelve-hour layover, on to LAX where I waited overnight in the international food court before I could finally catch a morning flight back to Seattle.

This incident helped me to see how much Martyn meant to me. I knew I wanted to be closer—physically—to him, and I knew that one way to achieve that would be by pursuing a path he had already followed. Ever since I finished my MFA in early 2004, I had toyed with idea of going back to university to earn my Ph.D, and since the idea of taking classes did not appeal to me for a variety of reasons, the research-only format of the doctoral degree in Ireland and the UK seemed ideal. That enrolling as a postgraduate student would also allow me to live over there for a few years gave me the final push I needed. One of the projects I worked on after returning to Seattle was applying to several universities.

Before I sent in my applications, however, I saw Martyn in person for the first time since we met. He attended the MLA conference in San Francisco in late December 2009 and then flew up to visit me through New Year’s and my birthday (January 3). We stayed in a cozy in on lower Queen Anne near an Irish pub and an outstanding Indian restaurant. We went to the waterfront where a seagull attempted to intimidate us into handing over our fries. I took him to my favorite cookie bakery in the Pike Place Market. At the Seattle Art Museum, we built on each other’s interpretations of paintings. We watched the New Year’s fireworks over the Space Needle, something I had never done despite growing up in the area. Most importantly, we found each other at least as attractive as we had before. He didn’t even mind my habit of yelling at CNN when I found their coverage slanted. Rather, he said he appreciated my passion. We changed our Facebook relationship statuses to “In a Relationship”. This time, I suggested it to save him the stress.

I finished my applications in February and tried to focus on my freelance work until the decisions came. In the meantime, Martyn and I met up again in New York since he had been invited by a panel organizer to give a paper at the New Jersey College English Association conference. We met at JFK. My flight arrived a few hours before his, and it took about an hour after he landed for him to get through passport control and customs. I had begun to worry that he was having trouble with immigration. We held each other for a long time once he came through those doors into the arrival hall.

The first night of our visit was St. Patrick’s Day. We ate dinner at a Mexican restaurant; we ordered margaritas and were asked for ID. When the server saw Martyn’s passport—which refers to the “United Kingdom of Great Britain and Northern Ireland”–he wished him a happy St. Pat’s Day. The two of us shared a laugh about that. Then we found a small Irish bar where we could drink whiskey and beer late into the night.

On the rest of our free days, we visited the MOMA, Central Park, and the Brooklyn Bridge along with a variety of restaurants, bars, and cafes. I had lived in New York for a year a while before we met and what positive memories I had of the place were clouded by the pain caused by a relationship with a man who turned abusive. Wandering the city with Martyn helped me reclaim that psychic terrain. We also saw a play about Elizabeth Bishop’s visits to Ezra Pound in the asylum where he was kept instead of being executed for his support of the Fascists during World War II. We enjoyed the play but during a discussion that followed muttered to each other about the statements made by a Pound biographer. We agreed, for instance, that Pound’s anti-semitism could not be excused as a relic of the times, since they were the same times when James Joyce wrote about Leopold Bloom.

As for the conference itself, when his panel’s organizer asked if I had come to help keep Martyn out trouble, I replied that I had come to help him cause trouble. To tell the truth, I don’t think he needed any assistance.

On the day we left New York, his flight departed first. The only reason I could bear to kiss him goodbye before he went through the security checkpoint was that I knew we had a plan to move closer together. Still, I watched him go as long as I could see him.

By July, the same month in which we had met two years before, I knew that I would be attending Queen’s University Belfast, about two hundred miles away from Hull. No doubt living so great a distance away from one’s partner can be an obstacle, but for us it opens up new possibilities: regular weekend visits and a greater ability to travel to conferences together. Maybe once I graduate, we will be able to find work in the same city, even live in the same apartment. For now, for us, two hundred miles seems like the same neighborhood.

Our relationship started in summer; it is appropriate that we should take this next step in the season that follows. If you’ve ever seen a whole forest turn brilliant red, then you know the beauty that autumn can bring. It may not be a season of new growth, but something wonderful is made nonetheless.