Sunday, May 30, 2010

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.

Saturday, May 29, 2010

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.

A small (re)introduction

Welcome, everyone! This is my new blog, named because I love wordplay, and because my attitude towards life is, through the eyes of many, overly idealistic. I feel it's just coloured by the radically romantic ideal that I, as an autistic woman, am deserving of my own voice to speak with. My language, mannerisms, and ideals are filled with flourishes of dreams and thoughts.
Before I get started, I want to make my reasons for starting this project clear.
Ask yourself this: If you are neurotypical, think back to all the stories on autism you have seen in the media actually featured an autistic person or interviewed someone who was autistic? How often did stories on autism portray it as a tragedy, a nuisance, or a horrible epidemic? Or, on the other hand, how many portrayals of autism display autistic people as savants (Savant syndrome differs from autism, though in some individuals, like Daniel Tammet, they overlap) with near inhuman abilities?
I do not have superhuman abilities. I cannot count cards like Rain Man. I am not an object of pity or sickened by vaccines.
Other autistic people will note similar experiences of seeing an extreme dearth of representation and accurate portrayal in the mainstream media. We're almost never asked about our own opinions on our conditions and life, the opinions of our doctors and our parents are sought, while we are pushed out of the way and only pulled into the limelight again when the story calls for us to be seen but not heard.
Well, this blog is my way of being heard, even if it only reaches an audience in the single digits. I have lived for nearly a quarter of a century as an autistic person. In this lifetime, I have come across some horrifying and unacceptable experiences and statistics that are the norm in how people like me are treated. To add insult to injury, many autistic people are denied the chance to explain their experiences, either because we are assumed incapable of doing so, or because our truth is uncomfortable for neurotypicals to hear. It shatters their back-patting self-assurance that disabled people now live comfortable privileged lives, and forces them to confront their own prejudice. We need to keep chipping away at that façade until it's blown away like so many motes of dust.
My blog is my chance to fight against that forced ignorance and silencing. My weapons are ten knobby fingers and a keyboard. I'm going up against a mighty enemy of forced ignorance. I hope you enjoy it.