On October 12, while presiding as the honorary chair for an Autism Speaks walk on the campus of Ohio State University, President Gordon Gee made remarks including the statement that “‘It [autism] should not exist.’” Melanie Yergeau, a 2nd-year Ph.D. student in English, wrote this letter, which is posted on the Autistic Self-Advocacy Network blog. As Yergeau, who notes that she has Asperger’s Syndrome, writes:

Until very recently, I have felt incredibly welcome at Ohio State—due to the interdisciplinary work of the Disability Studies Program and the Department of English, the Office of Disability Services, and the programs for high-functioning/Asperger’s adults at the Nisonger Center. I would urge you, as you continue in your autism advocacy, to consider what cure means to autistic individuals themselves, to familiarize yourself with organizations that actually appoint autistic individuals to their executive boards (e.g., the Autistic Self-Advocacy Network, or the Global and Regional Asperger Syndrome Partnership). In this regard, I find it important to note that none of the leadership or board positions of Autism Speaks are occupied by autistics: Autism Speaks speaks about autistics rather than for or with autistics.

As I read articles and listen to reports of the rally from my saddened autistic friends, I’ve noticed a trend in representation at Autism Speaks rallies like the one on October 12, 2008: autistics themselves have no voice. Any conversation that determines the fate of autism, I would argue, must consider the opinions, voices (however literally or metaphorically), and experiences of those on the autism spectrum. Although Autism Speaks admirably aims to help families attain necessary medical services, their cure-and-epidemic rhetoric frequently denies autistic individuals a most fundamental right—that of their personhood.

Read the rest of Yergeau’s thought-provoking letter.

Emmett Doyle and Michael Wesely are students—a senior and a junior, respectively— at Apollo High School in Minnesota and are both acting in a school production of A Christmas Carol. Doyle is playing Scrooge and Wesely is playing Marley, who visit Scrooge in ghostly form. As noted in the December 6th St. Cloud Times, both have Asperger’s Syndrome and have found acting a way to work on their social and communication skills.

Elements of theater such as following a script (which enforces turn-taking in conversation), interpreting body language, developing empathy for their characters and working as a team all help with their everyday lives.

Through acting, they are memorizing social cues, which can in turn become more instinctive to them offstage.

“One of the cool things about theater is it’s easier to talk to people. You don’t feel so isolated,” said Wesely, a freshman. “When you get up on stage, you’re not you. Even though you’re not you, you can express yourself as that character.”

“It’s a lot easier to read these lines and think about what you’re doing.”

Theater, the St. Cloud Times notes, is potentially a “legitimate form of autism therapy.” As the article also notes:

Acting is something [Doyle and Wesely] do almost every day.

“We basically spend our entire time acting like we’re not autistic,” said Doyle.

Acting can be seen as sustained role playing, perhaps……….

Sunday I wrote about singer Pip Brown aka Ladyhawke, who has Asperger’s Syndrome; a profile of her in the Independent noted how having Asperger’s is one reason that live shows aren’t the easiest for her.

Another musician, singer Craig Nicholls of The Vines, was diagnosed with Asperger’s four years ago: It’s been reported in Reuters via the Calgary Herald that the band has had to cancel their upcoming shows “due to a deterioration in the mental condition” and the “erratic behavior” of Nicholls. Some news sources refer to him as having a “mental illness” though what he has is Asperger’s syndrome—-the singer was diagnosed with Asperger’s after “abusing fans and assaulting a Sydney photographer.” Asperger’s shouldn’t be conflated with “mental illness”—doing so suggests that someone on the spectrum is “crazy” and that’s not the case—  and hope that Nicholls can get the care he needs.

The November 13th Newsweek has an article, More Than Just Quirky, about girls and women with Asperger’s Syndrome: Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?

Girls, it’s noted, have more “socially acceptable” obsessions—”horse and books,” perhaps, rather than “vacuum cleaners or oscillating fans”:

“Girls tend to get obsessed with things that are a little less strange,” says Elizabeth Roberts, a neuropsychologist at the Asperger Institute at the New York University Child Study Center. “That makes it harder to distinguish normal from abnormal.” That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls’ obsessive interests reflected the interests of girls in the general population; the same was not true for boys.

In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. “From my personal experience, they seem to have a greater drive to fit in than boys with Asperger’s do,” she says. “So they spend a lot of time studying other girls and trying to copy them.” When social settings change, this can spell disaster. “As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn,” said one Aspie woman who asked not to be named. “Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble.”

Of course, it’s not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl.

Newsweek also points out that “social mores might also make the disorder more harrowing” for girls, especially as they grow up and are expected to be more ’sympathetic and empathetic than boys.” It’s even noted that “desperation” for some kind of social connections “can make girls with Asperger’s easy prey for sexual predators.”

Over the past few years, it’s occurred to me that more than a few friends and others whom I’ve known—-and women, in particular—are on the autism spectrum. Most of them are undiagnosed; knowing about Asperger’s has helped me to understand why one friend, one instance, used to get so irritated when I started analyzing books and movies (her feeling: just talk about them, no need to “break them down and ask all those questions”). Another related some misunderstandings about what a member of the opposite sex was saying and found herself in a situation that wasn’t so easy to extricate herself from. And, adolescence was the beginning of many difficult years after a childhood that had been comparatively peaceful, especially thanks to parents who were glad to encourage some obsessions and cultivate them.

The Newsweek article opens and closes by referring to a mother, Liane Willey, whose daughter was diagnosed with Aspeger’s. Willey notes that she is “quirky” herself:

Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. “It was like a light bulb went off,” she says. “I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity.” And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to.

I’ve got my own set of “quirks” and—following Charlie’s diagnosis, have wondered if I might be somewhere on the spectrum and, while there are many qualities that Charlie and I share, I don’t think I’m autistic (well, that’s what I think). Has having an autistic child made you more aware of your own “quirks” and obsessions, and possibly of an actual diagnosis?

“Young, gifted, and autistic”: That’s how the November 16th Independent profile describes New Zealand-born singer-songwriter Pip Brown of Ladyhawke:

recently, she revealed to a British newspaper that she has Asperger’s syndrome (a form of autism) which suddenly shifted media interest from her music to her autism………

But it’s not the story that the singer wants to be defined by. “I really regret talking about it,” she says. “There’s a kid with Asperger’s who wrote to me on MySpace, saying I was a liar. It was really hurtful. I was like, you have no idea what I’ve been through. Yeah, I’m a bit weird. I do weird things. I’ve been really wary since then.” Not that it shows. Brown is chatty, warm and sincere; in many ways, the opposite of the autistic stereotype – which goes to show how far the stereotype is from reality, and how far she has come. Slouched on a sofa, she talks breezily, in her thick Kiwi accent, about her overwhelming and exciting year as a rising star.

Brown talks about her trouble in school as a child (”‘I wouldn’t go to school when I was younger, and when I did, I would just stare out the window. I didn’t like anyone touching me and I didn’t like people coming near me’”) and how she started playing piano at 8 and drums at 11 and “‘that was it for me. I loved it,’” as she says.

A couple of years ago—after locking herself in her house for three months—Brown got a diagnosis and felt much relief. It’s noted that live shows still aren’t the easiest for Brown, “partly due to the syndrome, partly due to nerves.”

Music, as I note a lot here, is a big part of Charlie’s and our lives and Pip Brown’s story resonates.

Shortly after 9/11, Gary McKinnon—a “UFO-obsessed computer hacker”—allegedly hacked his way into 97 computers belonging to NASA, the Department of Defense and several branches of the US military. The European Court of Human Rights has cleared the way for McKinnon, who is British, to be extradited to the US where he would face eight charges of computer fraud. McKinnon appealed this decision and lost, and autism experts, politicians, lawyers and civil rights campaigners have been urging home secretary Jacqui Smith to intervene so McKinnon can be tried in Britain rather than being extradited to the US.

Experts including Simon Baron-Cohen, professor of developmental psychopathology at Cambridge University, were commissioned to access McKinnon, who has been recently diagnosed with Asperger’s Syndrome, as reported in today’s Guardian. Smith has rejected the assessment:

‘We’re upset and disappointed with the Home Secretary’s decision, as she has clearly not given proper consideration to Gary being diagnosed with Asperger’s,’ said his mother, Janis.

According to a fresh legal challenge by McKinnon’s team: ‘There remains a real risk of the claimant being detained pre-trial and thereafter being imprisoned at a high-security institution, despite suffering from Asperger’s syndrome, which would violate the prohibition on inhuman treatment protected by Article 3 of the Convention.’

McKinnon’s lawyers note that there would be “profound implications” for their client’s mental health if he were put in a high-security prison in the US.

Regardless of whether or not BitTorrent founder Bram Cohen has Asperger’s Syndrome as reported in the October 16th Business Week, this post about Cohen in Valleywag—according to which Asperger’s is “a sort of autism lite thought to be common among geeks” and a “mental condition”—might lead you to at least raise an eyebrow or sigh in annoyance. Or exasperation.

A study from Minnesota look at how adults with Asperger’s Syndrome compare to others and offers a sense of hope. The study was done by Kim Klein, a pediatric neuropsychologist at the Fraser Center and Pat Pulice. From today’s CBS4.com:

“We’ve found that in some ways, this population is doing as well as their peers. They’ve been successful in obtaining employment. They’ve been successful in pursuing their hobbies,” said Pulice.

“Virtually all of the young adults with Asperger’s disorder graduated from high school, same as our control group,” said Klein. “Forty-five percent went on to college or some type of post-secondary education; identical rates to the control group.”

Klein and Pulice also noted that no one in the study with Asperger’s had reported problems with illegal drugs, alcohol or cigarettes; 25 percent of the other participants did. 69 percent of the participants with Asperger’s were found to be more likely to be treated with medication for depression, versus 39 percent of those who did not have Asperger’s. Much information about the study can be found on the Fraser Center’s website.

Deborah Lipsky was in her 40s when she found out that has autism, today’s Carroll County Times notes. Others have described getting diagnosed with Asperger’s Syndrome in their 50s; Nicky Gottlieb was 21 when he was diagnosed, after his sister, Lizzie Gottlieb, started to make a documentary about him, Today’s Man. When claims of a recent and dramatic increase in the autism rate are used as evidence for an “epidemic of autism,” the question is asked about where are all the adults with autism. Psychology professor Simon Baron-Cohen has written about the very late diagnosis of autism:

Baron-Cohen describes a “lost generation” of adults with AS who did not know what diagnosis they have—who did not know that what they have even existed. It was 25 years ago that Lorna Wing published an article on AS—which “the English-speaking medical profession had barely heard of”; the first book in English on AS was only published 15 years ago, by Uta Frith in 1991; it then “took until 1994 for the international classification systems that define how a diagnosis is made to recognize the existence of AS.” It is not that AS did not exist before it was identified and defined; what we now call “AS” was not even known as a distinct diagnosis until very recently.

And some parents, having found out their own child’s diagnosis on the autism spectrum, have sought their own diagnosis.

Of Deborah Lipsky, the Carroll-County Times notes:

In Lipsky’s case, her diagnosis has helped her develop coping strategies for the social and emotional problems she had suffered since she was a child. In 2005, she offered her story to a national seminar company and was given the job that has led to her success today.

Lipsky said she views autism as a cultural difference rather than a disease, and wants other people to share her outlook.

“I’m trying to train the next generation of service providers to look at the gift and not the limitations,” she said.

Or rather, gifts……….

A 14-year-old boy, Gerwyn Morgan, has been missing from his home in Merthyr Tydfil, today’s BBC News reports. Morgan has Asperger’s Syndrome and there have been several reports of sightings of him; officers are worried that he has run away and residents have been asked to check “such places as outbuildings, garages and sheds.”

Definitely hope he is found and home soon, and safe.