Oy Vey! Enough already with the NPR and the autism and the fail!

If it weren't for my long-standing crush on Ira Glass (Men with glasses, sorry!) and the fact that I notice a positive correlation between the amount of novels written by modern authors I read with my NPR reader/listenership, I'd probably be fed up already with their reporting on autism and call it quits. A few days ago, I posted on their coverage of Asperger Syndrome in the DSM and the amount of frustrating untruths and generalizations found in the interview. Now, I find myself infuriated at them again today, with an article about autism and oxytocin, titled, "Scientists Test 'trust hormone' for Autism Fight".

The title alone is problematic. Who's fighting autism here? What's there to fight about autism? Are we at war with something or someone? Is there some sort of grand battle here? And if so, can I commission an army of orcs?

I am already familiar with stories on oxytocin being used as a way of improving the behaviour of autistic children. I'm curious to see how it affects people like me, who have issues with intimacy and touching, but not until there's some solid science behind it. Especially for use on children, who may suffer more than an adult from negative side effects of unregulated drug use. It may prove helpful in the future, not a silver bullet that will magically make us neurotypical and cuddly teddy bears.

The way that this article was worded, you would think we were facing a life-or-death situation here. The word "hope" is tossed around like parade candy. It throws in the obligatory reference to a parent's struggle to find a miracle. To NPR's credit though, they point out that the research is not thorough enough to start spraying autistic children full of the stuff, lest there be long term side effects they are not aware of. I was grateful for that, home remedies often cause much suffering for autistic children. Chelation, anyone? The effects were well-described. It may help us improve our facial recognition techniques, and could possibly enable us to be more sociable.

But then, I saw the part of the article that made my eyes bulge out of my skull: Their choice for an interview on the possibilities of oxytocin was the Chief Science Officer of Autism Speaks. No autistic people were interviewed to give their opinion on the use of it. Not even someone from the Autistic Self Advocacy Network, or someone who had tried oxytocin before, or someone with issues the drug could alleviate, not a single one.

Once again, autistic people have been erased from the conversations that affect us most. NPR has decided that our thoughts and feelings on this important issue are not important enough, all things considered, to be included. Instead, they rely on someone from an infamous anti-neurodiversity anti-autism organization which makes money off of characterizing people with autism as objects of pity and autism as a monstrous force of nigh unstoppable evil.

It is unacceptable in the 21st century, the age where we have more visibility now than ever, in the age of Temple Grandin and Donna Williams, that a highly respected news organization relies still on the opinions of outsiders, rather than the disabled individuals themselves. This is way outside the norm of the disability community, and it needs to change. It's almost enough to make me wish that I had, as I originally planned when I started college, gone into journalism. It appears that neurotypical journalists from major organizations don't have much of a clue on how to respectfully report on autism and life with autism.

A long-standing motto/pledge of the disability community has been, "Nothing about us without us", NPR. And this is about us. Not about parents being provided with "hope". We're the ones who will suffer the long term consequences, if any. Why not give us a voice? That gives us more hope than any untested drug will.

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.