We are here, we are here!

This morning, my inbox was flooded with news about how the rate of autism diagnoses may actually be twice than previously thought: 1 in 38.

I'm not a scientist. I'm going to let the good folks like Steven Novella handle whether this is a hiccup in data, a sign of over-diagnoses, a wider diagnostic criteria, or simply what it is seen as now: A sign that we've been neglecting some with autism who manifest differently from what's expected.

All I have to say is this: If this is true, then it is critically important, now, more than ever, that we fight for the rights of autistic people in all areas: schooling, healthcare, education, employment, equal participation, and anything else which may have been previously neglected. Because if there is 1 in every 38 people with autism, we are going to need all the support and understanding we can get.

We are here to stay, world of neurotypicals. You can't sweep us under the rug anymore.

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.

Nostalgia Critic's Apology: Nice effort, but....

Trigger Warning for Disablist Language

The Nostalgia Critic, one of the most popular, if not the most popular, incarnations of That Guy With The Glasses, a famous internet personality who does what most of us have been dreaming about since the age of 11 (Well, at least I have): Having a massive fan-base and millions of hits for the virtue of recording videos pointing out just how asinine/impractical/condescending some movies can be.

I admit it, in spite of the times that they gaffe with disablist language and other fails, I'm a huge fan of the Nostalgia Critic, and other personalities on the site, like Film Brain, The Nostalgia Chick, and especially Linkara, who won my heart with his feminist criticism of comic books.

The Nostalgia Critic angered me greatly though, when during his Earnest Saves Christmas video, he made a cheap joke at the expense of autism. Mercifully though, he was called out on this by autistic and neurotypical fans alike, and removed that segment from his review of Earnest Saves Christmas, and apologized in this video pointing out his "fuck ups": http://thatguywiththeglasses.com/videolinks/thatguywiththeglasses/nostalgia-critic/27822-the-next-top-11-nostalgia-critic-fuck-ups

It's the #1 mistake, and the fact that he apologized gladdened my heart.

However....

His apology had some major mistakes, and I think it is only fair that I address them honestly, as an autistic person and a fan of his.

I am glad that he apologized at all. Most people who insult autistics and autism never apologize, they just moan about political correctness gone mad. But it is not okay to have your apology framed around the idea that there are "high functioning" autistics, as well as "low functioning" autistics (For more on why the terms high functioning and low functioning are not appropriate, check the post I did at Womanist Musings: http://www.womanist-musings.com/2010/07/fully-funtional.html)

To suggest that "Oh, there are autistics who are smart, act their age, and can talk and aren't amused by puppet shows, therefore I shouldn't have made this joke" devalues people who do not "pass" as neurotypicals as easily as people with Asperger Syndrome do. It draws a false value upon intelligence and verbal ability, suggesting that only those who act just enough like neurotypicals are worthy of being treated with respect, dignity, and kindness. Maybe that's not what he meant, but that was the impression I got when he mentioned that. It felt really jarring and wrong, like "Sorry that you auties who were smart enough to figure out I was insulting you were hurt, from now on, I won't do that. But I still don't think too highly of the value of people like you who can't talk or live independently.

And then there's his mention of "I know autistic people". Without playing oppression Olympics, it's been debunked enough times when someone says "Oh I have gay friends, so it's okay if I espouse homophobia" or "I have black friends, I can't be racist." It's just as inexcusable here.

Once again, I could be wrong. He could be pointing out that he knows people with autism who are not amused by children's puppet shows, but once again, this is drawing that false value upon people with autism who can talk and "pass" as neurotypical, suggesting again that people who may be amused by puppet shows are in fact worthy of such mockery.

I'm sure he learned his lesson and will never make an autism joke again. But I am hoping that the next step will be respect for all people who are non neurotypical.

Film Review: Mary & Max

This film was recommended to me by an ex boyfriend who was aware of my Asperger Syndrome/Autism. I went into the task of watching it with some apprehension, namely because a lot of depictions of autism in the media are downright embarrassing in their ignorance and prejudice against the idea of neurodiversity. But I trusted my ex's opinion, and watched Mary & Max tonight.

I think we have a new winner for the most sensitive portrayal of autism in film. Ever.

Mary & Max is only partially about Asperger Syndrome, which the character of Max has. It is more about the unique friendship struck up between himself and Mary, a lonely girl from Australia who writes to him on a whim after picking his address out of a New York phone book. The two form a bond that may seem unorthodox to neurotypicals, but to me, it made perfect sense. For people with AS, the task of friendships, particularly friendships with people in your own age group, can be daunting. It seemed natural to me that Max would more readily accept a friendship with someone who was younger than him, since children tend to be more forgiving of autism's special package of quirks.

Max, voiced by Philip Seymour Hoffman (Whom I think is neurotypical, correct me if I'm wrong) is matter of fact, well-rehearsed in many facts, and has difficulty with certain situations that can lead to a need for anti-anxiety medication... Just like me. The only time he's mentioned as having savant-like abilities is when he notes casually that he taught himself to read with both eyes, left page for left eye, right page for right eye. This is actually an attribute he shares with Kim Peek, one of the most frequently non-autistic people to be labelled as autistic. But the fact that Max's mind, while having many autistic qualities and having several special talents and an affinity with numbers, was depicted as not being in the super-genius range, was a welcome relief for me. Finally, someone I could relate to, whose intelligence didn't pose an intimidating challenge or make people with autism ask "Why can't I do that?"

What was most interesting to me was Max's attitude towards his Asperger Syndrome. He did not display any self-pity, loathing, or wishes for neurotypical life. He was proud to be autistic, and can even be seen in one part of the film posing in an "Aspies for Freedom" shirt! When Mary makes a faux pas that a lot of aspies would recognize as common curebie tendencies, Max acts as I would act in the same situation. He remarks that changing his Asperger Syndrome would be like trying to change his eye colour.

The film takes place over two decades, and it is, as I said before, a very accurate, touching portrait of what real life with autism is like. There's no pity for Max, only a love expressed for him and his bond with Mary. I wholeheartedly recommend it. I hope that even though it's no Oscar-grabbing prize winner, it plants the seeds of neurodiverse thought and autism acceptance in film festival goer's brains, and gets them to think twice before slapping a "Let's cure you!" attitude on.

Dateline NBC's Interview with Dr. Wakefield: Live blogging

I am at the moment watching Dateline NBC's interview with Andrew Wakefield.

My impressions so far in the first five minutes: So far, they've interviewed Wakefield, and done sound bites with two parents of children with autism. What's missing so far? How about an interview with, gee, I don't know, someone who is AUTISTIC?

The story thus far has also supported Wakefield's rhetoric that autism "steals" children, offering no rebuttal to such disgusting dehumanizing rhetoric. They just stupidly swallow it.

They're also framing Wakefield's study as under covering a "great discovery". Not good. Not good.

Now they've finally gotten onto the fact that Wakefield was working as a paid researcher against MMR, and stood to profit immensely if MMR was discredited.

3 quarters of a million US dollars. Totally doing it out of the goodness of his heart, right?

They are also exposing the patent application that Wakefield filed for a "safer" vaccine than MMR, which would have also lined his pockets handsomely if his findings discredited MMR.

They are showing a clip now of Wakefield joking about hurting the children at his son's birthday party by collecting blood samples from them. One of them cried in his mother's arms, two others threw up. The people at the conference in the clip laughed. Stay classy, Wakefield.

The formal retraction is next, and the journalist being interviewed is from Channel 4 news in the UK. I've forgotten his name, I think it's Deere. He's doing a great job at exposing Wakefield for the charlatan he is, and even provided a video clip from his news station at Wakefield rudely pushing away a camera from channel 4 at an anti-vax conference where, according to the journalist, he was surrounded by "adoring mothers".

So far, the story is coming together nicely in terms of discrediting Wakefield's research and showing that he was a fraud more interested in his own financial well being than the health and safety of his subjects or the truth that would come out if he conducted his research properly.

The narrator called autism "devastating." Thus revealing once again what is missing from this story. A respect for neurodiversity and an understanding that the only tragedy about autism is the bigotry of neurotypicals in refusing to love and accept autistic people just as they are, rather than imagining them as being "whole beings" under the "broken" child with autism on the outside.

The interviewer is asking pretty softball questions. Not a single curveball yet. I was hoping for a more tough line of questioning.

The Lancet editor admits that if they knew that Wakefield was involved in an upcoming lawsuit, then they would never have published Wakefield's garbage.

Wakefield is defending taking the blood samples at his son's birthday party because he gave them 5 pounds, and saying he needed samples from "normal children".

With no due respect Mr. Wakefield, I am normal, thank you. It's your unethical, dastardly, dishonest. manipulative tactics that are abnormal.

The next part of the story involves Wakefield's devoted followers. First, there is a summary of all the studies which have shown Wakefield's study to be bull, including a Finnish one which had a sample study of over a million children!

They're now talking about McCarthy. Now they have an interview with Paul Offit. Yay! Read his book, Autism's False Prophets. He does a good job dissecting the myth.

The FBI required Offit to have a bodyguard because of the death threats he received. I knew this already, but it's good they mentioned it. It shows just how out of touch with reality and dangerous anti-vaccine activists are.

Some common sense advice for parents from Paul Offit:

".... put your child in the safest position possible."

Absolutely. I am a little interested in the fact that the interview with Offit involved almost no talks about Wakefield, but was directed towards Offit's research and his own book. I'm glad that they decided to give a doctor who still has his medical license and has a strong position in favour of vaccines his own chance to promote his book and his ideas on vaccines and parenting, I feel the interview could have been better spent if a sliver more of time had been devoted to Wakefield's fraudulence.

They're covering Wakefield's time at Thoughtful House in Texas. Once again, the only sign of people with autism we are getting in this program are brief snippets of white, well-fed, male upperclass children stimming. That's it.

Here we go! One child from Minnesota. They're emphasizing the pity based model of looking at autism, saying he still wears a diaper. They are giving him a colon scope... I am screaming inside at the idea of unnecessary surgery being performed on an eleven year old nonverbal boy who cannot consent... And talking about it on national TV!

The indignity and disregard for Thomas' privacy is making me cry.

"Bring their son back from autism." "Parents have to find the next thing on their list." are being uttered. This is disgusting. They are doing nothing to refute the idea that autism is a disease or a tragedy.

The only real tragedy here is this absolutely mediocre news coverage. They have made no revelations thus far, and have not even attempted to introduce ideas regarding neurodiversity, and have not yet interviewed a SINGLE autistic person. They could have gotten Ari Ne'eman for this interview. Or someone from the Autism Self Advocacy Network. Anybody? Hello? Bueller? Bueller?

"Rob them of their ability to communicate" was just introduced as a symptom of autism by the narrator. Hooray. Because there's only one type of communication that exists, right?

What I find interesting is that all the parents pictured as being supporters of Wakefield are all white, all seemingly middle class. Autism knows no racial nor socio-economic boundaries, but this reinforces the stereotype that autism is a condition affecting mainly the children of the rich and white.

Also interesting is the choice of language, "...autism affects more than 1 in 110 American children." Wrong. It affects more than 1 in 110 children. It affects more than 1 in 110 people. Autistic children grow up to be autistic adults. We do not just magically vanish into obscurity once our 18th birthday rolls around. This has to stop being framed as only an issue of children. Autism is not new, there have been autistic people for aeons before Wakefield was born.

The story is finished now. They did just as I expected: A watered down, piss poor job with dull questions that one could find in a 5 minute google search or asking their doctor. No new reveals, no attempt to dissuade the stereotype of autism as a monstrosity. But they at least showed Wakefield as a fraud and gave recommendations from the Paediatrics Society and urged new parents to vaccinate, subtly mentioning that the nonexistent chance of autism developing was nothing compared to the thought of having to buy a baby coffin.

But the attitude of the mainstream media towards autism in general continues to irritate me and make me realize we now, more than ever, need to get autistic people into prominent positions in the public psyche and media. Because neurotypical news organizations are not going to give us a fair portrayal, especially if we are adults.