Wednesday, June 30, 2010

Dr. Barrett of Quackwatch faces legal thuggery from Doctor's Data

I don't have much more to add to this story. But I would like to say that the silencing and bullying tactics that are being used against Barrett are the same ones that people with autism face when confronting lies about the origins of autism and the snipe chase of a cure.
I have been criticized before for letting my identity as a skeptic get in the way of my autism blogging, but I say that being both a skeptic and autistic, the issues that the two deal with are equal in importance to me, and I feel that it is important that people with autism collaborate with members of the skeptic community to create the best income for people with autism. Truth is the root of the skeptical movement, and what's good for truth is good for autism.

Donate to Barrett's legal defense here through his website, Quackwatch:

And while you're there, check out the website. It's an invaluable tool for science based medicine and making reasonable, educated decisions.

Tuesday, June 22, 2010

Ne'eman confirmed

History was made today. Thank you President Obama. Thank you to all who fought for Ari in the face of threats to make his confirmation a pipe dream. There is now a person with autism who will fight for our rights. Self advocacy indeed.

Saturday, June 19, 2010

We worry about what a child will become tomorrow, yet we forget that (s)he is someone today. ~Stacia Tauscher

A big reason behind my entering the world of blogging was because I felt that the internet was the ideal way to get across a message that had been systematically ignored, mocked, or silenced out of the public debate on autism: That human beings deserve a basic amount of dignity, respect, bodily and intellectual autonomy, and independence, and that people with autism are human beings.
The public discourse about autism rarely focuses on this simple, frequently denied idea. We're almost never included in the discussion, except on occasions when we are paraded out in dunce caps to show off our pitiful existence in order to garner sympathy for our parents and caretakers. But what really gets me is that the most often provided targets of this pity parade are children. O, won't someone think of the children?
In my experience, the anti-vaccine camp is the most guilty of all the parties in performing this stunt. A particular example that has come to my attention recently involves a fellow referring to his child with autism as "damaged", in a Canadian newspaper. Owing to some interesting circumstances, I'm choosing not to name the paper nor the letter writer, for the safety of myself and my loved ones. But when I read his letter to the editor, I was instantly reminded of other examples of this. Jenny McCarthy's son, before his autism diagnosis when he was a "Crystal child", during his diagnosis and alleged "cure", and after it was revealed he never had autism at all. The children on Oprah Winfrey, squirming uncomfortably as they were held up by their mothers as an example of the "damage" vaccines had done to them, and countless other examples leap to mind.
It's not just the fact that they are humiliating these children in the public sphere that is problematic, or insulting them in front of all, with words like "empty", "husk", "broken", "sickened", "damaged", "stolen", "near dead" and "ill" being liberally applied. The very fact that children, particularly when it involves nonverbal children, are being used as pawns to advance the political/social agendas of adults is downright sickening. Children are not the property of their parents, to be displayed at their whim, or used as a bargaining chip in an ideological debate. They are individuals, and yet, their freedom and their power to decide their destiny is often marginalized due to the wishes of adults who hold power over them, whether it be parents, teachers, or caretakers. Especially concerning disabled children.
The reason that I am here today, writing this, is because my mother and father didn't use my neurological differences as a battering ram to force their viewpoints onto other people. I was not a trump card, or any other sort of metaphor or tool to them. I was their daughter, and their priorities to me were to protect, nurture, and respect my growth. Autistic children grow up to be autistic adults. But we cannot be happy, whole grown ups with autism if we grow up under the shadow of people who consider us to be broken, diseased, or political bargaining chips.

Thursday, June 17, 2010

Post-racial politically correct world my arse

Usually when a story about autism is featured in the media, it will rarely talk about the challenges faced by adult and teen-aged autistics, and they certainly won't talk about how disablism against people with autism intersects with other prejudices, like sexism, transphobia, homophobia, or racism.
But today, we find ourselves with a story on our hands of a teenager with autism facing horrific treatment at the hands of the police, for the "crime" of sitting around while black and autistic.

Like "Neli", I am autistic, and I enjoy walking, and will often leave the house in the early mornings to go for a stroll without leaving a note. The only difference is that I am in possession of white privilege, which means that I'm unlikely to be reported as "suspicious... possibly with a gun" to the police. Neli did nothing wrong, he is simply an unfortunate victim of racism, disablism, and the brutality of police officers who not only have no clue as to how to work with people with disabilities, they often openly embrace thuggish tactics.
Thus far, most of America's mainstream media has been silent. Because this story doesn't concern parading autistic children out in dunce caps to showcase what a tragedy they are, they seem to see no reason to pay attention to Neil's plight. But as a fellow autie, I see every reason to do so. Sign this petition here:
To Neli and his family, I say that I'm throwing all my support behind you and hope you know how many people are fighting for justice and your side of the story.

Tuesday, June 15, 2010

Stop stereotyping sexuality, sheesh!

Compared to neurotypical people of my own age group, I have a relatively modest amount of past relationships. Before I met my current partner, whom I love very much and consider to be my perfect match, I was only in a committed relationship with one other person, and I've had a few encounters that didn't amount to anything particularly significant. But in these minute encounters, I've noticed some particularly interesting differences between the way I as an autistic woman am treated by a potential suitor as compared to a neurotypical female.
For the record, I am also pansexual. This means that I am not particular about the gender of my partner, and I am equally attracted to men, women, and anyone who doesn't fit into the prerequisite gender roles, provided I feel that "spark" with them.
Since I often "pass" as neurotypical and I don't usually reveal my autism to someone until the subject gets brought up, I've noticed a schism between how I am treated by potential suitors when I am presumed neurotypical, and after the "big reveal". It's given me an interesting, and perhaps unique, insight into the way that society treats the sexuality and "dateability" of people with mental disabilities.
Even though I am candid and open about my sexuality, I don't usually seek out partners. I'm a loner by nature, and both of the serious relationships I have had happily fell into my lap, though with my current boyfriend, I had been actively in love with him for quite some time and was very happy when I found out he loved me too.
However, having a certain amount of pretty privilege, being white, cisgendered, TAB (temporarily able-bodied), pear-shaped, and tall, with long legs, a long neck, high cheekbones, and large eyes, means that I am sometimes subject to unwanted flirting, more often by men than by women. When this occurs, I am unsure of the proper way to respond, so I react out of a mixture of a desire to keep the person at an arm's length, and wishing not to appear rude. I can't seem to bring myself to outright reject a person, even when every instinct is telling me to do so, I am forced to remain friendly against my better judgement.
At first, these flirtations tend to be extremely sexual in nature, and focus a lot of emphasis on my appearance, with the interested person calling me "sweetie", "gorgeous", "honey", and "babe", amongst other pet names, instead of "Leah", my preferred form of address. Often, they will try to initiate small but intimidating forms of physical contact, such as touching my face, laying a hand on my shoulder, or touching my hand. All of which make me extremely uncomfortable, and make my sensory/tactile anxieties go absolutely haywire. This is often the step when my disinterest in non consensual physical affection with strangers becomes apparent, as I can't hide my discomfort any longer. But it's often brushed off as me being "shy" or in several cases, a "tease".
After getting to know me and becoming more aware of my quirky mannerisms, the person interested will often make a comment about it, at which point I "come out" as autistic. The reactions of that revelation have ranged from surprise/disbelief in the form of "But you seem so normal!" to outright rejection of my diagnosis, one person telling me, "No way, you're so normal, and autistic kids (nice way of infantizing autistics while simultaneously holding up the myth that autism is a children's syndrome) are majorly sick and effed up!"
But as time goes on and my honesty becomes apparent, I notice a shift in attitude. The most common symptom is a tone-down in the sexualized language, treating more like a child, and speaking to me in a slow, deliberate voice, as though I had difficulty speaking or was of below-average intelligence and verbal ability. Basically, their vision of me has changed from being neurotypical, and therefore sexy and desirable, to being non-neurotypical, and being therefore childlike, asexual, and not appropriate to be sexualized out of a fear that I might not comprehend the consequences.
I find this attitude insulting. I had the good fortune of having many a resource in my teens that helped me cope with my changing feelings and body; the best one being Asperger's Syndrome and Sexuality, by Isabelle Henault ( which not only explained appropriate expressions of sexuality to me, but helped me come to terms with my pansexuality and how to properly deal with situations like sexual harassment and assault. I am therefore just as, if not more, educated than a neurotypical on healthy sexuality and relationships. My disability should not be an automatic neutering. There are people with autism who are asexual of course, but in my experience, the idea that we're all asexual is just another symptom of the stereotype that autism is a childhood affliction and that autistic people vanish from relevance once we are past our 18th birthday. It freezes us in a perpetual childhood, and we cannot be respected as adults with the same desires for intimacy and companionship if we are considered neuter beings.
The flip side of the autism reveal coin is even more insulting, but inevitable in a culture where mental illness is feared and stigmatized: I have had potential romantic suitors who have, upon learning about my autism, attempted to shield me entirely from emotional conflict, citing a fear that I would have a "meltdown" or "blow up" if something went wrong. As though I were a child on the verge of a temper tantrum!
I cannot repeat enough, the fact that when it comes to abuse in relationships and society in general, people with mental disabilities are a lot more likely to be the VICTIMS of an attack or ongoing assault than they are the perpetrators. Autistic women are particularly vulnerable to this, since without proper tools and knowledge we can easily become victim to a neurotypical partner's abuse and not know a means of escape.
So I found their idea that if I lost my temper I would pose a danger to others to be laughable. This one is sinister in its stigmatizing people with autism as unstable and unfit for relationships, but it stems from the same idea. Instead of being sweet little children who don't know how to take care of ourselves, we become unbalanced freaks who could go after you with a pickaxe at the slightest provocation.
These ridiculous assumptions are the only ones in need of a pickaxe to the head. What people with autism need are supportive resources that can give a comprehensive sex education and teach about the full spectrum of sexuality, from my own to asexuality. What neurotypicals need is to understand that disabled people, not just people with autism, but all, deserve a fully realized, healthy sexuality that is celebrated, and a chance to express their sexuality in a safe manner with a partner who will not make these hurtful assumptions.
Am I asking too much? No way. I certainly got lucky with my own neurotypical partner. I am sure all other people with autism who desire a partner deserve the same.

Sunday, June 6, 2010

Fröken Salander & Me: How a misanthropic computer hacker will change autism in literature and life

Some Spoilers Ahead
The recent big hit that's taken the English-speaking literary world by storm is Stieg Larsson's posthumously published
Millennium Trilogy.
Since I work in a bookstore, I tend to, in a small way, have my finger on the public pulse in terms of what's popular reading and what's not. And The Millennium Trilogy, consisting of, in chronological order, The Girl With The Dragon Tattoo (Män som hatar kvinnor) The Girl Who Played With Fire (Flickan som lekte med elden) and The Girl Who Kicked The Hornets Nest (Luftslottet som sprängdes) have defied my usual, admittedly narrow-minded, expectations about what could become a bestseller in America. These are intelligently-written books that openly address misogyny, violence against women, sexism in the workplace, unfettered creepings of Nazism spreading through Europe like a sneaky STI, the treatment of both the police and the medical establishment of persons with disabilities and children, and AND the role that the media plays in manipulating the public in high profile cases. All while remaining a wonderfully written story that grips the imaginations of the reader and leaving them wanting more.
But this post isn't going to just be endless paragraphs of babbling praise for these modern masterpieces. You can read them in just about any newspaper or literary magazine if you wish. My specific wish is to talk about the most popular, controversial, (in)famous character in the novel, the "Girl" in the translated English titles of all three. Lisbeth Salander. She's being hailed as one of the greatest female characters to hit ink in the 21st century, she's already been captured onscreen by Noomi Rapace, and... she's autistic.
Ladies and gentleman, the literary paradigm regarding autism has been thrown off its feet.
It's not just revolutionary because it has a character with autism. It has a person with autism as one of the main characters (I don't think the word 'protagonist' is proper here) and often narrates using her point of view. Usually when this is attempted, it's clumsy and ham-fisted, and filled with overly flowery prose about connecting to the outside world, or else presents the person as a narrow-minded tabula rasa with no personality, only a long series of ramblings regarding interests in very obscure subjects (I'm looking at you, The Curious Incident of the Dog in the Night-time!) Salander however, is given the full force of a well-developed personality, and while she is presented with savant-like abilities, she is shown to be tormented by them, her photographic memory in particular.
I imagine this post might draw some ire from people who reject the notion that Salander is autistic. She is never properly diagnosed by the author as such, several characters, including a doctor, speculate that she has Asperger Syndrome. She also doesn't entirely fit into the stereotyped mold of autism, being in some ways emotionally vulnerable, having scars from abuses, and being actively sexual. Others may claim that since Salander is never officially diagnosed, labelling her as autistic is both a moot point and counterintuitive to the character, who is a complete individual that might sneer at the label of Aspergers after so many false diagnoses in the hands of abusive medical professionals.
But I saw myself in Lisbeth Salander. Like Salander, I've experienced hardships in my life and abuse at the hands of parental figures and authority figures, and I have some unusual talents, including a near-photographic memory (Though mine is not nearly as extensive as Salander's) Whether the character would accept the label or not, or whether she fills the entire criteria is not particularly relevant. Whether she likes it or not, Salander will change the way neurotypical authors portray autistic women, and any person with autism who reads the Trilogy will probably walk away with a different idea of what limits their diagnosis places on them.
What is particularly interesting to me as a woman with autism is the way that Larsson portrayed the pattern of abuse that Lisbeth experienced at the hands of her caretakers and people who were supposed to be in charge of her health and well-being. One of my major met peeves about portrayals of people with ASD, particularly ones with Asperger Syndrome, is to portray us more as victims of our own incompetence, poor social skills, and difficulty with verbal language and metaphor. Very rarely do neurotypicals take responsibility for isolating us, bullying us, abusing us, or turning us into pariahs for the crime of being different. But Larsson savages this illusion. Salander is a survivor who has been physically, emotionally, and sexually abused.
She is a child when it starts, and the fact that she is perceived as a "retard" (sic) makes it all the easier for her to be shuttled from one abusive caretaker to the next. Larsson's unflinching condemnation of Salander's abuse speaks for more than this girl with a dragon tattoo and enough emotional baggage to bring the strongest to their knees. It speaks for the systematic abuse of people on the entire spectrum of mental and physical disabilities. Larsson's native land of Sweden is the main target, but the message rings true in every nation, including my own America and Canada.
My hope is that Salander's fictional plight will cause the millions reading the Trilogy to reconsider the way that the disabled and vulnerable are treated outside of the pages of fiction. Though Salander and her plight are fictional, for disabled people across the world, it is a very real story.
Lisbeth somewhat fits the trope of an autistic savant, with her near-inhuman abilities in mathematics and computer hacking, and ingenious ways of getting herself out of difficult spots that any neurotypical would flounder in haplessly. But it is never mentioned whether this is a by-product of her autism, or a manifestation of her sheer will and intelligence after many years of having to cope with situations others can barely dream of. So it does not necessarily fall into the clichéd realm, but I hope it destroys the idea that people with autism are helpless outside of their narrow "obsessions" and have an incredible knack for self reliance and resourcefulness. We pretty much have to, facing constant abuse and isolation at the hands of neurotypicals. In the future, Lisbeth Salander's intelligence, resourcefulness, and ability to cope with the most incredible of circumstances will be in the minds of future authors when they pen a story about someone with autism.
Salander's sexuality will be the last thing I discuss in this post. But it's one of the more important things I want to address. Like me, Salander is bisexual. She has relationships with several characters in the book, most notably the main protagonist male, journalist Mikael Blomkvist, and her on-again-off-again lover Miriam "Mimmi" Wu. Both relationships are shown to be tied up with complex emotions most people who are unfamiliar with autism probably assumed was exclusive to neurotypical people. Without giving away spoilers, I can say that her relationships with both Blomkvist and Wu are multifaceted and intricate with emotion, shattering the idea that people with ASD are incapable of having relationships rich in both their sexual chemistry and emotional compatibility. Salander is far from the asexual being of past incarnations of autism, and she is even less like the raging rapist that with Asperger Syndrome that has become all the rage in "ripped from the headlines" crime dramas. She is open and candid about her sexuality, and in spite of some characters that are less sympathetic and trustworthy calling her promiscuous or a whore, Salander is never victimized by her sexuality. She is fully in control of it, even when suffering the scars any rape victim goes through.
The abuse that Salander has experienced makes her more antisocial and misanthropic than the average person with ASD. The only character I can think of that even comes close to matching her in her disdain for humanity and its flaws is the infamous Rorschach of Watchmen fame. I predict that Salander will become just as much of a cultural icon as Rorschach has in the public psyche. With that kind of fame, I hope that Salander will stick a knife into the heart of stereotypes about people, especially women, with autism. Or else tattoo "I'm an antiquated anachronism, an old stereotype, and a cliché" onto its stomach.