Apologies for the lack of posting. I don't even have much of an excuse, really, as I haven't had much to do the past two weeks.
I did want to let readers know that I'll be at Autreat this year. Are any readers also attending?
Wednesday, June 23, 2010
Thursday, June 17, 2010
Racism and Ableism on Display
A teenager is currently under arrest in a psych ward for having committed the "crime" of sitting on grass at a library while being Black and autistic. (This is after being in actual jail for 11 days.) Read the story and sign a petition demanding media coverage of this outrageous injustice, dear readers, please. I'm not entirely sure how effective these actions are, but I'll post again if something else comes up.
Shit like this is a lesson in white privilege. I've had some bad experiences with regards to being misinterpreted, to be sure, but as a white woman, I'm not in the "threatening" category.
Shit like this is a lesson in white privilege. I've had some bad experiences with regards to being misinterpreted, to be sure, but as a white woman, I'm not in the "threatening" category.
Friday, June 4, 2010
Meet the "New" Autism Speaks
Some people have suggested that the appointment of John Elder Robison to Autism Speaks' Scientific Advisory Board* may mark a shift for the organization. Obviously it's still very early, but let's consider some early evidence from the blogosphere.
Robison has blogged a fair bit about autism research lately, so I'll use that as a starting point. I agree with him on some things. For instance, a comprehensive study of autistic adults throughout the lifespan sounds like something that is probably worth supporting. (I don't know the particulars about the research or researcher, and so I won't venture say anything more than that.)
But other research projects that Robison has been blogging about strike me as problematic. Take, for instance, this post lauding some new Autism-Speaks grants. Basically, it seems to me more of the same: research pushing for earlier identification, insistence on the centrality of "early intervention," etc. What does this do for autistic people right now? I note that autistic children are already being identified at earlier and earlier ages. Why is it so vital that we keep pushing the age down? Does it really matter that much if we identify an autistic child at 22 months as opposed to 28 or 29 [months] for instance? I'm not convinced, and the endless repetition of the "early intervention" mantra is not a substitute for actual science which is willing to question supposed "truths." Nor does this kind of research truly deserve, IMHO, the amount of money it is receiving. Where are the supports for older autistic people, as researchers rush to "identify" earlier and earlier?
Even more problematic is Robison's recent post defending genetic research in autism. In this post, Robison proceeds from the assumption that autism is something which ought to be prevented, and doesn't everyone think that? It's sort of like cancer, an analogy which Robison makes. He writes,
Robison skirts over the issue of a prenatal test.
I agree, incidentally, that autism--like practically other condition or trait--has both genetic and environmental components. But why the assumption that this is caused by human-made chemical products? Environmental "triggers" (if that's the word you want to use) are literally everywhere. What reason do we have to assume that it's Something Dangerous that is Damaging us? I know Robison isn't an anti-vaxxer, but this rhetoric is dangerously close to some of what the Age of Autism crowd promotes. And again, this research has very little chance of helping autistic people right now. Robison's idea of autistic people getting "worse" (urgh) from exposure to household chemicals is far-fetched, to say the least. A far more pressing problem, I would say, is the over-medication of autistic people from psychiatrists and doctors who are trying to "help" us.** Is Autism Speaks going to fund a study on that any time soon? Or are they only interested in research that marks us as aberrant and defective?
Given these posts, I have serious doubts that Robison is going to steer Autism Speaks in a different and better direction. It rather seems to me that Robison is, in many ways, adapting the party line instead. It's very disappointing.
As to Autism Speaks' media representations of autistic people? I'm afraid I don't see any positive signs there, either. The organization now has a blog with a section entitled "In Their Own Words." [Warning: links to Autism Speaks] Does this mean they're giving autistic people a voice? Hardly. Virtually all of this section contains stories by or about non-autistic family members. Autism Speaks is, as usual, appropriating autistic people's voices by claiming to represent us.
A particularly egregious example comes today, with a "poem" (I use the term loosely) entitled "The Voice Unheard." The title alone is cringe-worthy, and the poem itself is even worse. Of course, the poem doesn't actually present a voice that is unheard. Rather, it is the sister of an autistic teenage boy writing from his perspective as imagined by her. Do we even need to get into why this is a problem?
The poem's content isn't much better, describing autistic people as having "infected minds." While the poem does state, correctly, that "autism isn't like cancer," this is only in the context of lamenting the lack of a cure:
Note the pharmaceutical-pushing here**, as well as the inevitable trope of "autism-family-as-saints." The author of this poem is only fifteen, so I am trying to be somewhat less harsh than I ordinarily would be. But this kind of ableism deserves dissection, even when it is perpetuated by minors. And especially when it is perpetuated by financially and culturally powerful autism "charities."
Short version of this post: Meet the new Autism Speaks, same as the old Autism Speaks.
*Note that he is appointed only to the 30-person scientific advisory board, and not the actual board of trustees.
**I am not against any and all usages of psychotropic medications--far from it. I do, however, have serious concerns about how autistic people and other neuro-atypical folks are often treated by the medical profession, particularly with neuroleptics. There are too many of us who have been seriously harmed by these medications, and there are far too many doctors willing to demand that people deemed to have unacceptable minds (usually this means labeled with autism, bipolar, or schizophrenia) take these dangerous medications, often in very high dosages. Neuroleptics haven't even been tested for safety in children, yet are routinely prescribed for autistic children and others.
I am entirely in favor of informed choice when it comes to psychotropic medications. But the system we have right now doesn't often allow for informed choice (or, indeed, choice at all).
Robison has blogged a fair bit about autism research lately, so I'll use that as a starting point. I agree with him on some things. For instance, a comprehensive study of autistic adults throughout the lifespan sounds like something that is probably worth supporting. (I don't know the particulars about the research or researcher, and so I won't venture say anything more than that.)
But other research projects that Robison has been blogging about strike me as problematic. Take, for instance, this post lauding some new Autism-Speaks grants. Basically, it seems to me more of the same: research pushing for earlier identification, insistence on the centrality of "early intervention," etc. What does this do for autistic people right now? I note that autistic children are already being identified at earlier and earlier ages. Why is it so vital that we keep pushing the age down? Does it really matter that much if we identify an autistic child at 22 months as opposed to 28 or 29 [months] for instance? I'm not convinced, and the endless repetition of the "early intervention" mantra is not a substitute for actual science which is willing to question supposed "truths." Nor does this kind of research truly deserve, IMHO, the amount of money it is receiving. Where are the supports for older autistic people, as researchers rush to "identify" earlier and earlier?
Even more problematic is Robison's recent post defending genetic research in autism. In this post, Robison proceeds from the assumption that autism is something which ought to be prevented, and doesn't everyone think that? It's sort of like cancer, an analogy which Robison makes. He writes,
Some of the best-known examples of this work can already be seen in the grocery store, or the hardware store. Just look at the label warnings that tell you repeated exposure to a certain chemical causes cancer. We see those warning labels on packages everywhere. We identify cancer-causing chemicals by exposing mice to a particular compound and seeing if they develop cancer. In the autism world, researchers have looked at exposure to high levels of lead, mercury, and other chemicals to learn how they affect the developing or developed mouse brain.
One day, thanks to this sort of research, we might have labels that say, “Warning - Exposure to xxxx can cause autism.” There may indeed be environmental toxins that trigger autistic regression in people, and there may be chemicals that make autism like mine worse. If I knew what they were I’d be sure to avoid them – any of us would – but science needs to identify them first.
Robison skirts over the issue of a prenatal test.
I agree, incidentally, that autism--like practically other condition or trait--has both genetic and environmental components. But why the assumption that this is caused by human-made chemical products? Environmental "triggers" (if that's the word you want to use) are literally everywhere. What reason do we have to assume that it's Something Dangerous that is Damaging us? I know Robison isn't an anti-vaxxer, but this rhetoric is dangerously close to some of what the Age of Autism crowd promotes. And again, this research has very little chance of helping autistic people right now. Robison's idea of autistic people getting "worse" (urgh) from exposure to household chemicals is far-fetched, to say the least. A far more pressing problem, I would say, is the over-medication of autistic people from psychiatrists and doctors who are trying to "help" us.** Is Autism Speaks going to fund a study on that any time soon? Or are they only interested in research that marks us as aberrant and defective?
Given these posts, I have serious doubts that Robison is going to steer Autism Speaks in a different and better direction. It rather seems to me that Robison is, in many ways, adapting the party line instead. It's very disappointing.
As to Autism Speaks' media representations of autistic people? I'm afraid I don't see any positive signs there, either. The organization now has a blog with a section entitled "In Their Own Words." [Warning: links to Autism Speaks] Does this mean they're giving autistic people a voice? Hardly. Virtually all of this section contains stories by or about non-autistic family members. Autism Speaks is, as usual, appropriating autistic people's voices by claiming to represent us.
A particularly egregious example comes today, with a "poem" (I use the term loosely) entitled "The Voice Unheard." The title alone is cringe-worthy, and the poem itself is even worse. Of course, the poem doesn't actually present a voice that is unheard. Rather, it is the sister of an autistic teenage boy writing from his perspective as imagined by her. Do we even need to get into why this is a problem?
The poem's content isn't much better, describing autistic people as having "infected minds." While the poem does state, correctly, that "autism isn't like cancer," this is only in the context of lamenting the lack of a cure:
Autism isn’t like cancer
There’s no cure
Or solution found
Only drugs and medication
To try and calm us down
But I am lucky to have a family
That loves me so much
They make sure I’m taken care of
And do everything they must
Note the pharmaceutical-pushing here**, as well as the inevitable trope of "autism-family-as-saints." The author of this poem is only fifteen, so I am trying to be somewhat less harsh than I ordinarily would be. But this kind of ableism deserves dissection, even when it is perpetuated by minors. And especially when it is perpetuated by financially and culturally powerful autism "charities."
Short version of this post: Meet the new Autism Speaks, same as the old Autism Speaks.
*Note that he is appointed only to the 30-person scientific advisory board, and not the actual board of trustees.
**I am not against any and all usages of psychotropic medications--far from it. I do, however, have serious concerns about how autistic people and other neuro-atypical folks are often treated by the medical profession, particularly with neuroleptics. There are too many of us who have been seriously harmed by these medications, and there are far too many doctors willing to demand that people deemed to have unacceptable minds (usually this means labeled with autism, bipolar, or schizophrenia) take these dangerous medications, often in very high dosages. Neuroleptics haven't even been tested for safety in children, yet are routinely prescribed for autistic children and others.
I am entirely in favor of informed choice when it comes to psychotropic medications. But the system we have right now doesn't often allow for informed choice (or, indeed, choice at all).
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