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.

Memories of admissions and that odious "Extracurricular activities" box

When I was in high school, I was a lousy student. I will be the first to admit it. I had a mediocre GPA, no extracurriculars that would make a good impression, and did not volunteer for any charitable organizations or events. I think I got into college purely because UM had low standards and because I can write one hell of an essay when the mood strikes me.

I was often asked, by admissions officers and other people taking an interest in my college future why I was so reluctant to sign up for charity work. My more ambitious classmates were devoting all their free hours to beach clean ups, volunteering at literacy programs, all the usual activities that look good on a resume or a college application. And that was exactly why I was not spending any of my time alongside them in those activities. Because that's all they were to them, activities to impress board rooms full of college admissions officers looking for "well-rounded" students who were active in their communities, but in activities that could be happily considered uncontroversial and non-rebellious. Very few of them really were passionate about the activities they were connected to, and very few of them had little more than a cursory knowledge of the charities they were working for. Just ask any high school student I blasted for supporting Autism Speaks, hahaha.

And I wanted none of that. I saw it as the ultimate hypocrisy. Miming an interest in the welfares of others for the sole purpose of forwarding your own ambitions. These able-bodied, neurotypical, mainly white, cisgendered, straight students were cashing in on the system of handing bread crumbs to the poor and the disabled so that they could one day cozy up into sky-high offices and never bother to look back down again. I was adamant that I would do my own activism on my own terms, and none of it would be user-friendly to rooms full of old white academics who were out of touch with the true struggles of those who were on the force-fed end of this system of photo ops and references on applications.

Now I am in college, and my attitude is considerably less harsh towards charitable work done by high school students. I know that many organizations are forced out of scrimping and pinching in order to survive and continue their operations, and I am glad that they have them to count on, even if their motives are less than 100% altruistic.

But my personal feelings towards my own credentials in that field remains the same. I am not your typical "March for Autism" charity walker. Autism is my life. I cannot put on a blue t-shirt, do a song and dance for some cameras, and then jot it down on an application and forget all about it. I wake up autistic, I go through my day autistic, and every night I go to bed as an autistic. My passion for seeing my own people be treated with respect and my crusade to end dog-and-pony shows that treat autism as something to be pitied will not gain me entrance to universities or private clubs.

My outspoken resistance to the efforts to bottle us up and use as as props to show off their giving spirit has been met with misunderstanding, open hostility, and outright accusations of being a self-hating autistic who doesn't know what's good for me. My truth makes people who do faux-charity gigs uncomfortable, because it forces them to question their own goodness in their empty gestures when they hand over their latte money to Autism Speaks after shopping at Toys R Us, unaware or perhaps not caring that it will go either towards posh New York suite offices or developing a method of wiping autism off the planet. It's about giving themselves a reassuring pat on the back and looking good to each other.

But I do not require the approval of admissions officers, an ink-soaked resume, or a spot at Harvard as a token Autie destined to change the world of calculus or chemistry to reassure myself that my activism means something. I can look inside my own mind and see that what I am doing is helping myself come to terms with a world that reviles me and my voice, my very existence.

Mohala i ka wai ka maka o ka pua- As the faces of flowers open to water, so too do people thrive where the living conditions are good

Trigger Warning for violence and abuse

If I were to comment on every story on autism I see on a mainstream piece of news, I would be left with a major headache and blisters on the tips of my fingers.

But one autism story that has been popping up more and more lately is the story of children with autism being abused in the hands of their teachers, aides, or parents. It is often chalked up to a "few bad apples", rather than a tale of systematic abuse of children with disabilities due to widespread misunderstanding of the nature of autism, how children with disabilities communicate, and a culture that devalues children and regards them as someone to be seen and not heard.

Very rarely does a type of story that is of vital importance to people with autism get discussed: Creating an autism-friendly environment in our schools.

In my own experiences as a person with autism, public school environments put in little to no effort to make the school physical environment any more comfortable, safe, or inviting. Loud, noisy cafeterias where the din from metal against metal, feet against floor, and harsh fluorescent light can cause panic attacks or meltdowns, uncomfortable chairs where certain forms of stimming are uncomfortable or impossible and overcrowded classrooms, extreme heat, and exposure to textures, smells, and tastes that triggered meltdowns, all of these marked my experience as a student when I was young.

This distracting environment miserably affected my academic performance. The sole consolation was that my school was extremely well-planned in regards to surrounding nature- flowers, trees, and bushes which allowed me to observe insects, collect leaves, and create my own mini toys or dolls out of the pods, leaves, and sticks. But not all schools have that good fortune, and for many children, there is no escape from the over-stimulation. The social environment in my elementary school experience was characterized by isolation, due to me being "different" and weird. This didn't bother my young self when it came to recess and free time, because I enjoyed being by myself. In mandatory group activities though, I was forced to interact with others. My saving grace was my ability to follow instructions quite well, as long as the language wasn't filled with idioms I was unfamiliar with. In fairness, my elementary school made certain I was included in these activities, even if I was seen as a "freak" by the other students.

My experiences at a private school between grades 6 and 8 were improved in terms of the physical environment slightly. The classrooms were air-conditioned, the lighting was considerably less harsh, and a few of the classrooms had the luxury of a couch, which I would sit in and read or stim during recess and lunch break. The cafeteria was smaller as well, and the lighting was turned off during the daytime, and sunlight came in through the windows. However, in terms of the social environment, the situation considerably deteriorated. Collaborative learning is extremely important in those school years, but nobody wanted to be paired up with "the freak", so the groups that got stuck with me never let me forget their resentment and dislike of being around me. I recall the teachers doing mild reprimands, but no strong, consistent effort was made to combat the type of subtle, passive aggressive bullying I experienced.

My experience is one of the more mild ones that can happen to a student with autism though. Other children have been put through much worse. Eighteen percent [1] of children with autism have been abused physically, and sixteen percent [2] were sexually abused.

Based on my own experiences and the collective data on the horror of the abuse perpetrated against children with autism, I have to temper my own desire to see the very best actions taken for my brothers and sisters on the spectrum with the reality that many public schools are terrifyingly underfunded, understaffed, and overcrowded. Autism knows no class boundaries, and can become apparent in the family trees of millionaire and construction worker alike. But poor children on the spectrum do not have access to the resources that children born to wealthier families do, and will often languish the worst in poor schools with limited funding. Little effort is made to invest more money into education for disabled children, or even able bodied neurotypical children. More funding definitely needs to be allotted to teaching children and teachers alike about the needs of children with autism, and how an environment that is ideal for all three parties can be met.

But there is absolutely no excuse for the level of cruelty and violent abuse that children with autism have suffered from teachers in certain cases. Regardless of how "difficult controlling the child" was, adults in a position of power exercising such violent control over children whom they are responsible for is nothing short of a failing of our society to understand that children with autism need our love and acceptance. Not violence or exclusion.

My previous point about finances has an additional footnote: While it may seem expensive to overhaul public education not only to better serve the needs of disabled children, but to create classrooms that are inviting and enriching for ALL children will be expensive, it will pay for itself in the long run. Schools were neurodiversity is promoted, where children of all levels of ability exist side by side and all receive the help they need, it creates a society where these children grow up to be adults who have the flexibility and empathy to accommodate people of all backgrounds. I think the ways that could benefit our society speaks for itself. Also, children with autism who are treated well as children and flourish in their environments grow up to be adults who are not afraid of the world around them, and can use their own unique abilities to chip in to a harmonious future.

I have argued before that neurodiversity shouldn't mean we should only value intelligent individuals who are verbal and can hold jobs. People with autism of all ability levels have their own special talents to share. If we nurture these gifts, we will see more people with autism becoming invaluable contributors to their fields and their communities. Not just the "Rain Men" that are so popular in mainstream myth, but all people with autism.

If neurotypical society makes an honest and vigilant effort to understand the needs of individuals with autism and implement them, make them standard procedure, we will not ever need this conversation again, nor will news stories about children being beaten, restrained, locked up, caged, hit, kicked, and sat on darken my inbox on a weekly basis.

That is my first quixotic message to my readers.

[1 & 2]: http://www.ncbi.nlm.nih.gov/pubmed/16293306