From Epidemic to Expert Excuses: Asperger Syndrome and the DSM (Again!)

I've blogged before about the topsy-turvy ride that Asperger Syndrome, the type of autism I am diagnosed with, has had in terms of diagnostic criteria and inclusion as a "mental disorder". Earlier, it was mentioned in the media that Asperger Syndrome was to be taken out of the DSM in favour of an all encompassing label of autism. I was supportive of this, because I believed that it is more inclusive to just have the diagnosis be "autism" rather than trying to make an arbitrary distinction based on verbal ability and the talent for "passing" as neurotypical (albeit a possibly eccentric or "odd" one) Now I find that NPR is reporting again on Aspergers in the DSM, found here . Interviewed at home is Allen Frances, who first had Asperger Syndrome included in the DSM. Now, he is second-guessing his decision, and I find his logic, as an autistic layperson with no background in psychiatry, to be, well, odd:

It's not that Frances doesn't think that Asperger's exists and is a real problem for some people; he does. But he also believes the diagnosis is now radically overused in a way that he and his colleagues never intended. And why, in his view, did Asperger's explode? Primarily, Frances says, because schools created a strange unintentional incentive."In order to get specialized services, often one-to-one education, a child must have a diagnosis of Asperger's or some other autistic disorder," he says."And so kids who previously might have been considered on the boundary, eccentric, socially shy, but bright and doing well in school would mainstream [into] regular classes," Frances says. "Now if they get the diagnosis of Asperger's disorder, [they] get into a special program where they may get $50,000 a year worth of educational services."

Let's ignore the implication that Asperger's is a "problem" for the moment and focus on the meat of this idea: That Asperger Syndrome (And the 'autism epidemic') is directly increasing as a result of unfettered greed and an eagerness to milk funds for socially awkward neurotypicals who don't need all this fancy-shmancy help to get by in society and school.

Bullshit.

This is based on tired idea that when the rate of a diagnosis for an invisible disability goes up, it's de facto the result of over-diagnosis. Not a refined diagnostic criteria that has included groups that were previously not considered (In the case of Asperger Syndrome, think women and girls, older adults, the poor, or people previously misdiagnosed [or just singularly diagnosed without considering other intersecting disabilities] with OCD, ADHD/ADD, Bipolar disorder, or another invisible disability)

I've seen similar backlash against ADD/ADHD diagnoses before, and I'm familiar with the mainstream attitude this breeds. It causes people who genuinely need acceptance and accommodation to be labelled as victims of helicopter parents/lazy teachers, or cogs in the grand machinery of big pharma. Such backlash is extremely dangerous, particularly for adults with disabilities who may have gone their entire lives needing help until a fitting diagnosis gave them the tools to manage their lives with minimal trouble. It breeds contempt for the disabled, since their disability is not visible. It also makes it difficult to pioneer further exploration into how to treat and manage the more difficult aspects of certain disabilities, when public attitude sneers at the said disability as hogwash.

This also overly simplifies Asperger Syndrome as the stereotype of the little professor: Brilliant, highly verbal and articulate, somewhat socially awkward, whose troubles stem from an inability to communicate with the opposite sex or understand some aspects of polite society. It ignores trouble with sensory overload, depression and anxiety, learning difficulties like dyslexia and synesthesia, bullying and sexual assault... I could go on all day. These are not big pharma falsehoods designed to make money. Genuine problems beyond being socially awkward exist for Aspies, and with our inclusion under the autistic label, it opens up a world of possibility for us to lead better lives.

I didn't have the pleasure of getting what I needed when I was in high school to succeed to the best of my ability, because nobody was familiar with my disability and its needs. So I failed math and science classes, suffered socially and physically, and began coping with the isolation and pain by chewing on my hair, stimming, and scratching/picking at my skin.

Had my disability been understood and recognized earlier, I would have coped considerably more healthfully. I would rather have a few people accidentally misdiagnosed than have another aspie go through what I did, being left behind essentially. A couple of thousand dollars spent on schooling now will save in the long run on creating healthy, adjusted, accommodated disabled adults who have not lost hope on ever belonging or being given what they need to live in this judgemental neurotypical-centric world.

Though we are often glad to know how much better our understanding of autism and Asperger Syndrome is compared to 20 years ago, it appears some people still have some catching up to do. People who, scarily enough, have the power to wipe away our disability's perceived validity with the stroke of a pen.

Letter to D

This was inspired in part by my talk at the Children's Development Center. In the interest of safety, I will not reveal who D is, but I will say that he was there when I was talking to parents like his about autism, which D has.

Hello D,

A couple of nights ago, I was talking to moms and dads like your very own mom and dad. They were asking me all about people like you and I: My hobbies, my favourite foods, my dislikes, my favourite thing about myself, and what I think is the best possible path for them to take to raise kids like you, kids who are like I was at your age. You were off in the corner with your legos, and I felt like joining you and answering their questions while building a totally awesome fortress. But I sat at the table and just talked, while clicking my tongue occasionally, sighing, and rocking gently back and forth in my chair. Occasionally I cracked a joke.

When I was talking with them, I saw them smiling, laughing, and there was something in them that I was able to faintly detect, though I'm not so good at this type of thing: A mixture of relief and gratitude.

I think I know why they're grateful, D, but I can't be sure. I think they were glad to see me. See me there, dressed nicely, hair combed, but still wearing my totally comfy old scruffy black addidas shoes, mismatched socks, and rocking back and forth like I do. I was clearly like their own kids, but I was happy, content, and at ease (somewhat) in the world of adult conversation and adult responsibility. I had goals, dreams, and a tangible type of happiness, the kind that playing with those legos used to give me.

I think, more than anything, that's what they want for you, and their own kids. That happiness. For a long time now, they've been told that that's beyond your grasp, that your autism means that there's no hope, no future for you beyond living at home in your own filth and their shattered dreams. That's the image the media and not-so savoury folk have fed them about our autism. But that night, I could practically feel it break away. There was something different taking root there, and it was this idea that not only was happiness possible for you and I, it was all possible without having to force us into a way of life we were never meant to adhere to.

It's important that people like those parents know I exist, that others like me exist. When I was your age, I didn't know there was anyone like me out there. When I was your age, what I "was", would often be dubbed a mystery, a puzzle, or unsolvable. I had people call me horrible names and tell me horrible things. I've never managed to shake it off, and it forms a weight on me that sometimes makes my words, thoughts, and deeds drag along the ground, like a ball and chain. I know that this still goes on, and it makes me shudder and wince with a pain you'll grow familiar with as you age.

But I want a better future for you. Both myself and my parents want it. If the world took off its pity-tinted glasses and saw you do what I see you do, they'd be amazed. I love your intricate lego designs, towering high. I marvel at how you, like me,love to blow on cold glass and trace along letters and numbers in them. I'm amazed at your prowess with your finger as you write out these sums and words. But most of all, I love seeing you stimming quietly or not-so-quietly in the corner of the room uninterrupted. No attempts to jerk you out of it, no worries about how weird you look.

I love it because it's the world you created for yourself, and now, nobody wants to intrude in and deflate it. Never lose that world, D, it's your safe haven.

I promise you, I am going to do everything in my power to make sure that safe haven is yours to keep. I was luckier than others yesterday and today, and I want the very best of luck for you and all your friends. There's a little bit of me in all of you, and you all have something you share with me. Treasure it. And I'll make sure that it is seen for the precious gift it is, until you're old enough to protect it yourself.

Hopefully by then, nobody will be fighting to rob you of it though.

Leah Jane

Letting Down My Entire... Spectrum?

Today on Geek Feminism's Blog, a post delved into the difficulties of being representative of your entire gender/disability/race and the guilt that arises from taking a breather- Not going on to get your PhD, or anything else. Other examples I can think of, in terms of gender, are choosing whether or not to stay at home after giving birth, or choosing whether or not to have children, whether or not to get married, an absolute plethora.

But the main place my mind went to when reading that was not regarding my gender or sex, but my disability. Every paragraph hit me like a sack of hammers as I remembered all the times I rigidly attempted to be on "my very best behavior" when in a crowd of neurotypicals or a neurotypical-dominated place, like a classroom, a social function, or an awards event. And more recently, I've become active as a speaker on autism, doing local events in my community such as at the children's development center, and hosting my own advice column, "Dear Aspie" on my university's autism club's facebook wall. Sometimes, I have to defer, I love the work, but I don't always know the answer:

So you feel guilty. For yourself, for other people. You feel like changing the world rests in your hands, and you let the world down because you had to say no. You had to quit. You had to hide. You were capable of doing it — that was not in question — but you didn’t want to and you’re worried people will think that was a sign of weakness. You chose not to. And you’re feeling guilty.

Yup. Pretty much. That's how I feel whenever I get a mediocre grade on a test, whenever I needed to drop a class, whenever life got in the way of me doing what I thought was best. Or, whenever I lost my temper. Truthfully, visible signs of my autism didn't bother me. I had no qualms about stimming, or my curious speech or mannerisms, and have made no effort to correct those.

But I worry constantly that it is my duty to be as kindly, charitable, bright, creative, sweet, and articulate as I can muster, to compensate for other autistic people I have met who have made me shudder with embarrassment. On and offline, I've met autistic people who fulfilled every negative stereotype about Asperger Syndrome: Conniving, arrogant, self-serving, cruel, misanthropic, sexually frustrated, and suffering from a ripe combination of poor hygiene and delusions of grandeur. This has led to undue stress on myself as I attempt to emulate what I grew to see as the "perfect" aspie: Humble, quiet, intelligent, gifted, conventionally attractive, and quasi sexually appealing while remaining smartly chaste. Like if Temple Grandin and Miss America were mishmashed together.

I can't live up to that however. But what's more important than discontinuing the act is to figure out: what can I do so that I don't have to feel like I need to follow the act? What steps can be taken to eliminate these negative stereotypes in a way that doesn't leave me drained?

President Aspie: Or, I'm sick of armchair diagnoses

So, Crooks & Liars, a known American liberal blog, posted this podcast recorded by two people known as "The Professional Left", titled, "Hey Obama, Get Your Head Out Of Your Asperger's".

My first and most immediate reaction, which has been my de facto reaction to stimuli as of late, was as follows, "What the everflowing milk of human kindness?!?!"

See, I was confused and irritated, expecting I'd run across a typical "disability as a metaphor" joke that's so common to both liberal and conservative media, but with the liberals I get more annoyed because I expect more from them.

So I listened to the podcast, and shut it off in disgust after the part about Asperger Syndrome was finished. There was no transcript available(If anyone wants to brave their way through the podcast and make one, be my guest, I'll do a proper one later Edit: Lindsay of Autist's Corner did a terrific analysis and transcript here: http://autistscorner.blogspot.com/2010/12/more-disagreeing-by-diagnosing-aspie-in.html), but the dialogue went along the lines of: (highly paraphrased here)

Woman: So I have this theory.... (chatter about anticipating what this amazing new revelation could be)

Man: I'm girding my loins [in anticipation]!

Woman: I think our president has high functioning Asperger Syndrome! It's becoming more obvious now the way he reacts to everything, he's so much like Spock, the Star Trek character, you know? And he doesn't display emotions and he is logical and rational, and so many other traits. And he focuses on the little details instead of the big picture!

Man: Well, that could be it, I mean we understand these traits about Aspergers and that end of the spectrum as being....

[Continue intersliced with boring rabble about Wikileaks, constitutional law, imperial presidency, and not listening to the American people with obnoxious laughter and ham-fisted jokes about nerdiness based on the Spock reference]

I was frozen. There's not much more I can focus on here that hasn't been covered before. Typical Bingo fodder. Comparisons to Spock? Check. Devoid of Emotion Card? Check. Stereotyping all autistics as being uniformly like this? Double check.

But what irked me the most about this is that when the American people were at an all time euphoria about Obama, he was compared to Spock, and Superman, and other idols of nerd culture, but the "A" word never came up. Now, progressives are finding a few walloping things wrong with his decisionmaking and snubbing of progressives, and now it's so convenient to label him with autism or some other type of "disorder" or invisible disability. Disability need not apply to people when they're doing what you think is right, but the moment you find fault with them, disabilities begin to be thrown about, and always the negative stereotypical traits are thrown in too. Never would it be suggested (At least while he is alive, see Einstein and Newton) that Obama has Asperger Syndrome for an exceptional trait which makes him a fine leader. Always focus on what makes them different, not good. Same for Narcissistic Personality, or Psychopathic Personality, Obsessive Compulsive Disorder, or now, Asperger Syndrome. Yay. Or just happily labelling anyone who disagrees with you as part of the Loonie Left, or a Wingnut, or a Right Wing Nutjob, having "Nazi Tourettes", having some type of ADD or ADHD, or a Crazy [Insert noun] or Republitard.

How delightful to know that the mentally and intellectually disabled are so disposable.

For the record, I find it highly doubtful that Obama has Asperger Syndrome or autism of any kind. The closest connection I can find between him and autism is his historic appointment of Ari Ne'eman.