Please sponsor my 5k swim coming up in April and help support Marie Curie Cancer Care, an organisation which provides home nursing care to people with terminal illnesses.

sometimes invisible
in the corners of a party, a pub
is sometimes how I want it
to breathe & to observe

and sometimes how you
ignore my words

but I live on your block
on your street, I’m not
easy to spot
to avoid
funny as I walk

I am autism
and am not dying of it,
will not infect you
if I bleed or kiss you

and I’ve taught your children
English, swimming
they haven’t been taken
they haven’t become
like me

I am autism
and I am in love
with someone who loves
me more steadily than the moon
reflects the sun, and he
is autism too

if I were your child
you might change some plans
you might change your dreams
fine, go ahead and grieve

worry
what will become of me

but don’t fight me
don’t think I am gone

I am autism
and autism is me

are you listening to me?

Autism Speaks made the ad below to draw attention to the issue of private insurers that deny coverage of treatment for issues related to autism. They even manage to portray autistic children without suggesting that they are monsters, which is quite an achievement for this group, but take a close look at what they suggest the consequences of lack of coverage are:

A child who cannot get the treatments deemed appropriate by Autism Speaks will, apparently, not be invited to play and will thus be left alone in whatever activity he (because Autism Speaks only displays autistic boys) was engaged in. It seems to me that if the normative children refuse to befriend a child who hasn’t received treatment, then they are the flawed ones, but that is not what the audience is supposed to get from the commercial.

Rather, they are expected to understand that being alone while the other children play together is a terrible fate. By taking advantage of this perception, the ad also reifies it, which is unfortunate. I will not pretend that I have never been lonely, but my life as a young Aspie would have been a lot easier if the adults around me had realized that I often needed to be let alone. Paradoxically, such an understanding would have made it easier for me to get along with my peers; pushed to socialize more than I could handle, I was likelier to act in alienating ways, to lash out. Moreover, portraying playing alone as the worst possible fate disrespects the internal worlds, resources, and thoughts of autistic individuals.

To be clear, this is not just some theoretical objection about the relative value of interpersonal connections. The attitude this commercial adopts and confirms has a negative impact on real autistic children.

Note too that the boys are both white (though the normative children are more racially diverse) and, to judge from the size of their houses, from relatively affluent families. Autism knows no economic boundaries, but to portray children in a less-wealthy neighborhood would have required a message about truly universal healthcare, which would be just a bit too radical for the well-off neurotypicals who run this misnamed charity.

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Can parents who expose their children to unnecessary risks of disease and death due to irrational beliefs be considered good parents? That’s the implication of this Newsweek headline: Why Good Parents Believe Myths About Autism and Vaccines. A more interesting question might be why parents who refuse vaccines continue to be considered good parents.

I see two factors at work here:

1. Socioeconomic privilege: The families that refuse vaccines are typically white, educated, and middle-class or higher. Thus their intentions are assumed to be good, and they do not fit easily into our stereotypes of the dangerously or laughably ignorant.
2. Autism-phobia: the abject horror with which society regards autism and autistics makes it easier to consider these parents’ actions understandable. No one wants to take even an infinitesimal chance of creating the sort of monster depicted by groups like Autism Speaks.

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If you felt caged and demeaned and telling people that you felt that way didn’t do a thing to change it, how would you react? If you ran out of ways to try to change that situation? If you felt hopeless? I think most people, regardless of whether their neurology is typical or labeled disordered, would answer that they would lash out (if they were being honest). This was my first thought as I read this tragic (for all involved) story by Ann Bauer in Salon.

Autism, being the marked case, gets blamed when something goes wrong. Similar lashing out from a neurotypical young man who could not be diagnosed with anything would not be blamed on his neurotypicality. The Stanford prison experiments screened participants so that only “normal” volunteers could be included, but you hardly ever hear anyone referring to them as the “dark side of normalcy” (only of the human psyche). (Given the tendency of well-known groups like Autism Speaks to portray the spectrum in negative terms, I have a very difficult time understanding why Ms. Bauer seems to think that discussing a “dark side” to autism is somehow transgressive.)

But what is the actual relationship between Andrew Bauer’s violence and his autism? Living in a society that does not have appropriate spaces for you makes it likelier that you will feel caged and humiliated. Autistic individuals, barring extensive educational interventions, typically have fewer tools to allow them to protest treatments that make them feel this way.

This leads to frustration which, intensified, can lead to violence. In some cases, it is internalized and leads to depression or self-harm too.

ETA: Lisa Jo Rudy also discusses this article on examiner.com

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This article about a debate over “curing” autism includes a line that is perhaps more telling than the reporter realized. In describing what led the chief executive of NBC Universal, Bob Wright and his wife Suzanne, to found the thoroughly repulsive group, Autism Speaks:

Soon they no longer had a grandchild whom they could imagine becoming a world-beater like Wright himself, but a crisis.

The horror for these people was not that their grandchild might find it difficult to do things he himself would like to do or that people might mistreat him because of his unusual appearance or actions; it was the child’s difference, his deviation from the family norm. In this case, because of the label attached to that difference, they have been able to turn their outrage at the child’s difference into a fundraising juggernaut. Their quest to destroy his difference takes place under the banner called cure, which allows Bob Wright to make repeated comparisons to cancer (two in that article alone), never mind that nobody ever died of autism.

Had the child merely grown up to be a communist or an artist of the sort that doesn’t bring in money even during a global art boom, I suppose they would have had to make due with expressing to their friends what disappointment he was and excluding him from their will. That is, of course, unless they could find a diagnosis on which to blame it.

Instead, they have been able to express their disgust with appeals that win sympathy. They should really see autism as a blessing.