The same people who bemoan the supposed "lack of safety testing" with regards to vaccines are going to be among the most vociferous defenders of a physician who experimented with children.
This particularly noxious form of ableism in the anti-vax movement has been striking to me for a long time. The same people who claim that vaccines haven't been tested to their idiosyncratic standards are the first to support giving autistic children untested, potentially dangerous "treatments." The message is clear: Standards of medical and research ethics are only important for (allegedly) "normal" children. If you're an autistic kid, parents and "doctors" have the right to experiment on you and try dangerous and unproven "treatments" on you as much as they please--scientific standards and ethics be damned.
When will anti-vaxers hold biomed practitioners to a fraction of the (impossibly high) standard they set for vaccines?
Thursday, January 28, 2010
Wednesday, January 27, 2010
Book Review Series: The Ethics of Autism
This may (or may not) be the first part in a series discussing The Ethics of Autism: Among Them, But Not of Them by Deborah R. Barnbaum (Indiana University Press, 2008).
I picked up this book a few weeks ago because it caught my attention. When I first looked at it I hoped, despite a few indicators to the contrary, that there would be some pro-neurodiversity content.
After now having read the introduction, I have to doubt that. The introduction is full of the "Theory of Mind" claptrap, which it uncritically accepts. Accepting this premise, the introduction continues to muse philosophically about autistic people and membership to "the moral community," basically indicating that some kind of new theory is needed in order to accommodate autistic people. This is apparently the subject of Chapters 1 and 2, which I have not yet read, and hence I can't speak much to Barnbaum's reasoning. But I have to say that I find these kinds of questions incredibly irritating and dehumanizing. Autistic people do not need non-autistic people (using simplistic schematics of autism devised by other non-autistic people) to theorize in order to recognize our humanity or membership to "the moral community" or however else you want to put it. Barnbaum herself describes this series of issues as "questions about the value of autistic lives" (8). Hello, academic ableism.
The rest of the book doesn't look much more promising, based on Barnbaum's overview. I get the impression that she thinks she's inviting discussion on a bunch of Profound and Fascinating Topics. I don't see it; the ethical answers to her questions seem rather self-evident to me. The question of who should decide (and whether) to administer a "cure" to autistic adults should one become available seems pretty basic--unless one shares Barnbaum's bizarre assumptions that autistic people are completely noncomparable to non-autistic people and may not be true "agents." Heck, even many anti-neurodiversity folks are against forcibly curing an autistic adult who communicates (in a socially recognizable manner) the desire to not be cured. Yet this is a cutting-edge question in bioethics?
While the introduction concludes with some vaguely pro-neurodiversity sentiments, I find them pretty dissatisfying in light of the various postulations which precede them.
Why is our personhood and right to autonomy up for debate?
Even if Barnbaum does have some (peculiar) kind of pro-neurodiversity sentiment, her project seems to be entirely misconceived. She starts with presumptions which treat autistic people and non-autistic people as beings from separate planets, are overly simplistic, and are silencing of autistic voices.
It is this last problem which is most damning. When I first saw the book, I was pleased to see that she included sections entitled "Voices of Autism" centered around individuals, including Jim Sinclair. I assumed that the book featured writings from Sinclair and other autistic people. Wrong. It turns out that the "Voices of Autism" sections are nothing more than brief biographies of said autistic people, including very short summations of their views, and typically a few short quotes. Is this Barnbaum's method of showing autistic perspectives--which are sorely lacking in the main text? If so, it feels blatantly tokenistic and patronizing. Acknowledging autistic people as agents demands taking seriously our perspectives throughout an analysis such as this--not boxing off a few biographies between chapters.
Barnbaum, it seems to me, isn't writing about the ethics of autism. She's writing about the ethics of autism as perceived by a variety of non-autistic "experts." Which is an entirely different issue--and a purely theoretical one, at that.
I'd also note that I'm not entirely comfortable with the tendency to use (perceptions of) autism to discuss wider ethical questions. Disability is not your analogy.
Serious discussions of autism and ethics cannot happen in forums where the terms are set--by non-autistic people--in an inherently dehumanizing way.
I may or may not continue to read the book and blog about my thoughts on it. I won't make any promises on that one--my time for discretionary reading is limited, and I'm not sure I have the fortitude to continue with this one.
I picked up this book a few weeks ago because it caught my attention. When I first looked at it I hoped, despite a few indicators to the contrary, that there would be some pro-neurodiversity content.
After now having read the introduction, I have to doubt that. The introduction is full of the "Theory of Mind" claptrap, which it uncritically accepts. Accepting this premise, the introduction continues to muse philosophically about autistic people and membership to "the moral community," basically indicating that some kind of new theory is needed in order to accommodate autistic people. This is apparently the subject of Chapters 1 and 2, which I have not yet read, and hence I can't speak much to Barnbaum's reasoning. But I have to say that I find these kinds of questions incredibly irritating and dehumanizing. Autistic people do not need non-autistic people (using simplistic schematics of autism devised by other non-autistic people) to theorize in order to recognize our humanity or membership to "the moral community" or however else you want to put it. Barnbaum herself describes this series of issues as "questions about the value of autistic lives" (8). Hello, academic ableism.
The rest of the book doesn't look much more promising, based on Barnbaum's overview. I get the impression that she thinks she's inviting discussion on a bunch of Profound and Fascinating Topics. I don't see it; the ethical answers to her questions seem rather self-evident to me. The question of who should decide (and whether) to administer a "cure" to autistic adults should one become available seems pretty basic--unless one shares Barnbaum's bizarre assumptions that autistic people are completely noncomparable to non-autistic people and may not be true "agents." Heck, even many anti-neurodiversity folks are against forcibly curing an autistic adult who communicates (in a socially recognizable manner) the desire to not be cured. Yet this is a cutting-edge question in bioethics?
While the introduction concludes with some vaguely pro-neurodiversity sentiments, I find them pretty dissatisfying in light of the various postulations which precede them.
Why is our personhood and right to autonomy up for debate?
Even if Barnbaum does have some (peculiar) kind of pro-neurodiversity sentiment, her project seems to be entirely misconceived. She starts with presumptions which treat autistic people and non-autistic people as beings from separate planets, are overly simplistic, and are silencing of autistic voices.
It is this last problem which is most damning. When I first saw the book, I was pleased to see that she included sections entitled "Voices of Autism" centered around individuals, including Jim Sinclair. I assumed that the book featured writings from Sinclair and other autistic people. Wrong. It turns out that the "Voices of Autism" sections are nothing more than brief biographies of said autistic people, including very short summations of their views, and typically a few short quotes. Is this Barnbaum's method of showing autistic perspectives--which are sorely lacking in the main text? If so, it feels blatantly tokenistic and patronizing. Acknowledging autistic people as agents demands taking seriously our perspectives throughout an analysis such as this--not boxing off a few biographies between chapters.
Barnbaum, it seems to me, isn't writing about the ethics of autism. She's writing about the ethics of autism as perceived by a variety of non-autistic "experts." Which is an entirely different issue--and a purely theoretical one, at that.
I'd also note that I'm not entirely comfortable with the tendency to use (perceptions of) autism to discuss wider ethical questions. Disability is not your analogy.
Serious discussions of autism and ethics cannot happen in forums where the terms are set--by non-autistic people--in an inherently dehumanizing way.
I may or may not continue to read the book and blog about my thoughts on it. I won't make any promises on that one--my time for discretionary reading is limited, and I'm not sure I have the fortitude to continue with this one.
Friday, January 22, 2010
Mythbusters: Gary McKinnon Edition
In response to various comments I've seen floating around the autistic community, I'd like to post about Gary McKinnon for only the second time in this blog's history. I myself was not very well-informed about the case until today, so I thought I would post some of what I've learned here. (The link is to McKinnon's Wikipedia entry, which I think is actually fairly free of bias.)
Myth: McKinnon didn't understand he was committing a crime (due to impairments in understanding social rules).
Fact: McKinnon did understand the criminality of his actions, as evidenced through his repeated "notes" (and threats) to U.S. military officials. Consider these words, which McKinnon has admitted to leaving:
While his statements are a bit difficult to unravel due to McKinnon's conspiracy theory about September 11, I think it's pretty clear that these are not the words of a person who is unaware of the criminality of his actions. He wanted to "disrupt."
Myth: He may have been experiencing an irresistible, OCD-like compulsion in hacking. Sometimes autistic people feel that way about their special interests.
Fact: McKinnon's actions were performed over a number of days. He also resumed hacking just a few weeks after September 11. (Yet more evidence that he knew what he was doing. The timing is unlikely to be a coincidence.) These "compulsions" were spread out over time, thereby making his actions repeated crimes (at least 97 times). If this were just a one-time transgression, I would be more sympathetic. But McKinnon had ample time to consider the ramifications of his actions and redirect his energies towards legal activities. He chose not to.
Myth: A psychiatrist has said that McKinnon will kill himself if extradited. Therefore, he should not be extradited.
Fact: The second statement does not necessarily follow logically from the first. There are other ways to prevent suicide, regardless of what potentially biased psychiatrists have to say about it. McKinnon's supporters too often pose a false choice: Extradite him, and he'll commit suicide, or don't extradite him. There are other choices. I am in favor of providing McKinnon with reasonable accommodations in his incarceration. Avoiding extradition altogether isn't an accommodation, but a "get-out-of-jail-free" card.
Myth: McKinnon was on U.K. soil when he committed the crime, so he shouldn't be tried in the U.S.
Fact: While it is technically true that McKinnon was physically present in the U.K., the crime was actually committed via the Internet, which knows no national boundaries. This argument is a distraction which obscures the real issues involved in Internet crime. For goodness' sake, the crime was against the U.S. Department of Defense. How is that not an offense against the U.S. government? Certainly technology has led to a number of ambiguities in terms of criminal jurisdiction. Numerous transnational treaties have established laws for dealing with precisely this kind of situation. This brings me to the next point...
Myth: It's outrageous that a U.K. citizen is being subjected to this kind of treatment. It's all the fault of evil Americans. (paraphrased)
Fact: The democratically-elected British government agreed to these treaties. They were not simply imposed on the U.K. by the Big Bad U.S.
I'm an American citizen who is highly critical of a number of my government's policies and practices. I'm rarely (never) accused of being a nationalist of any kind. But oftentimes in reading commentary on the McKinnon case, I'm struck by the belligerent anti-Americanism. Reading some of these comments, one would think that the rest of the world (including Great Britain) is a land of sunshine, roses, and total liberty--except when infringed upon by the terrible Americans, of course. And to this I have just two words, and they are "bull" and "shit." Non-American countries have done plenty to contribute to human misery and loss of liberty. Let's stop making the U.S. the only villain, and idealizing other nations to ridiculous extremes.
And let's stop making this case a primary focus of autism advocacy. There are many autistic adults who are some combination of homeless, unemployed, or institutionalized. But apparently, the only autistic adults worthy of extended advocacy campaigns are those who have committed international crimes.
Myth: McKinnon didn't understand he was committing a crime (due to impairments in understanding social rules).
Fact: McKinnon did understand the criminality of his actions, as evidenced through his repeated "notes" (and threats) to U.S. military officials. Consider these words, which McKinnon has admitted to leaving:
"US foreign policy is akin to government-sponsored terrorism these days? It was not a mistake that there was a huge security stand-down on September 11 last year...I am SOLO. I will continue to disrupt at the highest levels." [emphasis mine]
While his statements are a bit difficult to unravel due to McKinnon's conspiracy theory about September 11, I think it's pretty clear that these are not the words of a person who is unaware of the criminality of his actions. He wanted to "disrupt."
Myth: He may have been experiencing an irresistible, OCD-like compulsion in hacking. Sometimes autistic people feel that way about their special interests.
Fact: McKinnon's actions were performed over a number of days. He also resumed hacking just a few weeks after September 11. (Yet more evidence that he knew what he was doing. The timing is unlikely to be a coincidence.) These "compulsions" were spread out over time, thereby making his actions repeated crimes (at least 97 times). If this were just a one-time transgression, I would be more sympathetic. But McKinnon had ample time to consider the ramifications of his actions and redirect his energies towards legal activities. He chose not to.
Myth: A psychiatrist has said that McKinnon will kill himself if extradited. Therefore, he should not be extradited.
Fact: The second statement does not necessarily follow logically from the first. There are other ways to prevent suicide, regardless of what potentially biased psychiatrists have to say about it. McKinnon's supporters too often pose a false choice: Extradite him, and he'll commit suicide, or don't extradite him. There are other choices. I am in favor of providing McKinnon with reasonable accommodations in his incarceration. Avoiding extradition altogether isn't an accommodation, but a "get-out-of-jail-free" card.
Myth: McKinnon was on U.K. soil when he committed the crime, so he shouldn't be tried in the U.S.
Fact: While it is technically true that McKinnon was physically present in the U.K., the crime was actually committed via the Internet, which knows no national boundaries. This argument is a distraction which obscures the real issues involved in Internet crime. For goodness' sake, the crime was against the U.S. Department of Defense. How is that not an offense against the U.S. government? Certainly technology has led to a number of ambiguities in terms of criminal jurisdiction. Numerous transnational treaties have established laws for dealing with precisely this kind of situation. This brings me to the next point...
Myth: It's outrageous that a U.K. citizen is being subjected to this kind of treatment. It's all the fault of evil Americans. (paraphrased)
Fact: The democratically-elected British government agreed to these treaties. They were not simply imposed on the U.K. by the Big Bad U.S.
I'm an American citizen who is highly critical of a number of my government's policies and practices. I'm rarely (never) accused of being a nationalist of any kind. But oftentimes in reading commentary on the McKinnon case, I'm struck by the belligerent anti-Americanism. Reading some of these comments, one would think that the rest of the world (including Great Britain) is a land of sunshine, roses, and total liberty--except when infringed upon by the terrible Americans, of course. And to this I have just two words, and they are "bull" and "shit." Non-American countries have done plenty to contribute to human misery and loss of liberty. Let's stop making the U.S. the only villain, and idealizing other nations to ridiculous extremes.
And let's stop making this case a primary focus of autism advocacy. There are many autistic adults who are some combination of homeless, unemployed, or institutionalized. But apparently, the only autistic adults worthy of extended advocacy campaigns are those who have committed international crimes.
Wednesday, January 20, 2010
More on Baron-Cohen
A few bloggers have interesting responses to my post about the incoherency Simon Baron-Cohen's proposed diagnostic criteria.
Amanda Forest Vivan at A Deeper Country goes through the criteria and points out several problems, including the fact that Baron-Cohen's prototype of an Asperger's autistic just sounds like an asshole.
My favorite excerpt: "I don’t understand why SBC even claims to be studying AS at all because he’s just studying 'people with bad social skills.' That’s all he thinks it is."
Quoted for truth. The experience of being on the spectrum involves much more than social cluelessness, yet Baron-Cohen insists on a reductive explanation of autism which brings everything back to his silly theories about "mindblindness" and "lack of empathy." At some points when I read his work, I rather get the impression that he thinks autistic people are sociopaths. For instance, he seems to be under the impression that the typical autistic person isn't bothered by seeing an animal in pain. This fills me with rage I can only begin to describe in words.
Astrid further discusses Baron-Cohen's nonsensical views on fiction.
Key quote: "Imagination, after all, only counts insofar as Baron-Cohen can imagine it."
Amanda Forest Vivan at A Deeper Country goes through the criteria and points out several problems, including the fact that Baron-Cohen's prototype of an Asperger's autistic just sounds like an asshole.
My favorite excerpt: "I don’t understand why SBC even claims to be studying AS at all because he’s just studying 'people with bad social skills.' That’s all he thinks it is."
Quoted for truth. The experience of being on the spectrum involves much more than social cluelessness, yet Baron-Cohen insists on a reductive explanation of autism which brings everything back to his silly theories about "mindblindness" and "lack of empathy." At some points when I read his work, I rather get the impression that he thinks autistic people are sociopaths. For instance, he seems to be under the impression that the typical autistic person isn't bothered by seeing an animal in pain. This fills me with rage I can only begin to describe in words.
Astrid further discusses Baron-Cohen's nonsensical views on fiction.
Key quote: "Imagination, after all, only counts insofar as Baron-Cohen can imagine it."
Saturday, January 16, 2010
Zakh Price & Restraint and Seclusion
Thanks to Emily at A life less ordinary, I've looked at the police report for the arrest of Zakh Price.
Key part:
So Zakh's "battery assault" was in response to being restrained himself.
Why aren't the school staff members being charged with a crime? Or at least having their actions investigated? Why isn't there an acknowledgment that Zakh was acting in self-defense?
Lessons learned: "Normal" people in positions of power can physically restrain (abuse) children with disabilities without consequence. Children with disabilities who resist this kind of treatment are criminals.
Let's help change this egregious system which permits abuse by supporting the Preventing Harmful Restraint and Seclusion in Schools Act. This Thursday, let's call our representatives in Congress and let them know that we want them to co-sponsor this legislation. How many Zakh Prices and Jonathan Kings must there be before our government decides that disabled children are deserving of protection?
Key part:
Jan said Zak pushed her to the ground when Principal Siebenmorgan tried to help restrain him.
So Zakh's "battery assault" was in response to being restrained himself.
Why aren't the school staff members being charged with a crime? Or at least having their actions investigated? Why isn't there an acknowledgment that Zakh was acting in self-defense?
Lessons learned: "Normal" people in positions of power can physically restrain (abuse) children with disabilities without consequence. Children with disabilities who resist this kind of treatment are criminals.
Let's help change this egregious system which permits abuse by supporting the Preventing Harmful Restraint and Seclusion in Schools Act. This Thursday, let's call our representatives in Congress and let them know that we want them to co-sponsor this legislation. How many Zakh Prices and Jonathan Kings must there be before our government decides that disabled children are deserving of protection?
Tuesday, January 12, 2010
Diagnostic Criteria, Stereotypes, and Invisibility
I was recently made aware of "new" diagnostic criteria for adult Asperger's Syndrome, developed by Simon Baron-Cohen and his team. While I was pleased to see that some researchers are actually paying attention to adult issues, including the issue of diagnosis, numerous aspects of the research itself were troublesome to me.
Long-time readers will know that I have some disputes with Baron-Cohen. These are not simply ideological disputes--I believe Baron-Cohen to be a sloppy researcher and frankly am amazed that he is considered to be an "expert" in the field of autism. His eminence in the field does not speak very well of the autism research community's ability to produce quality research free from stereotypes and assumptions. And Baron-Cohen, of course, produces stereotypes on at least two fronts: gender and neurotype.
When reading Baron-Cohen's work, published in 2006, I couldn't help but wonder what is actually new about the criteria he is proposing (hereafter referred to as AAA, Adult Asperger Assessment). Because the criteria itself largely looks like a more specific and stringent version of the DSM IV; there does not seem to be much attention to adult-specific issues, and there certainly isn't much attention to gender-specific issues. Gender issues nevertheless pervade the report in ways which are not adequately addressed.
This study has a male/female ratio of 9:1 (rounded down). This ratio is, quite simply, horse manure, and even many researchers and clinicians are beginning to recognize it as such. The gender ratios for other forms of autism are often closer to 4:1. Why would Asperger's autism have a gender ratio more than twice that of other forms of autism? Baron-Cohen is simply regurgitating old, tired ideas about Asperger's autism, including the outdated 10:1 ratio.
Moreover, Baron-Cohen's definition of Asperger's autism is clearly infused with very stereotypic notions about autism which are both confining and expressed in a way which clearly portrays autistic people as defective normal people. I remain flummoxed why so many autistic people see Baron-Cohen as a pro-neurodiversity figure. At best, he's promoting a very shallow concept of neurodiversity which suggests that we're only valuable in so much as some of us are talented engineers and mathematicians. Our worth is not contingent on our abilities, or our disabilities, but rather our common humanity and rights which we share with all other human beings.
When so many professionals already have silly stereotypes about autistic people, I can only hope that Baron-Cohen's "AAA" criteria do not take hold. While there are certainly issues with the DSM IV, at least it does not suggest that all autistic people lack imagination and read only certain kinds of books.
It is this part of criteria (part D) which is most troubling to me, and also the part where Baron-Cohen's ridiculousness is most apparent. See D1:
This particular criteria conveniently embodies everything that's wrong about Baron-Cohen's AAA. Therefore, I will analyze it in detail:
1. The wording seems more appropriate to children than to adults. When we're talking about adults, "developmental level" hardly seems like appropriate terminology. You rarely hear people discuss "developmental level" in regards to neurotypical adults. What is "appropriate development" for adults in terms of reading preferences and is it any different at 65 than 22?
2. What defines "appropriate developmental levels" in terms of reading at any age? Is the adult who loves Harry Potter (i.e. me) not reading according to hir "appropriate level"? Is the advanced reader who reads the classics at age 8 not appropriate? What about autistic people with dyslexia or other learning disabilities?
3. Baron-Cohen tries to be more specific than the DSM IV, but ends up being even more vague in many ways. How is it diagnostic to prefer going to a museum rather than a theater? And heck, how are these abstractions meaningful in any way? There are lots of different kinds of museums, and lots of different films/shows shown at theaters. If I were asked this question in a diagnostic assessment, I would say that I need much more detail in order to answer this question. What kind of show or movie would I be attending? What kind of museum would I be visiting? What would the situation be like sensory-wise at both locations? What about autistic people who like going to watch documentaries (non-fiction) or lectures in theaters? Doesn't that totally challenge Baron-Cohen's simplistic ideas?
I may be an Official Asperger's Autistic, but I definitely would not be interested in going to a crowded and noisy museum regardless of what was being exhibited. I certainly wouldn't want to go in a museum with subject matter that I find uninteresting. I do, however, often enjoy going to movies and musical productions if it's something I want to see. Blanket assumptions such as those made by Baron-Cohen are ultimately rather useless.
4. Why are certain forms of fiction (i.e. science fiction) arbitrarily exempted from the category of "fiction"? Because this makes absolutely no sense at all, when we look at it without preconceived stereotypes. How is a book about aliens and spaceships any more "restricted to its possible basis in fact" than a story about living in modern-day New York City? If anything, the contemporary story is clearly more rooted in fact. In his attempt to perpetuate the stereotype that autistics "lack imagination" and don't read fiction, except for those sci-fi geeks, Baron-Cohen ends up producing a diagnostic criteria which is silly and nonsensical. This, folks, is diagnostic gerrymandering at its finest, and it needs to be vigorously opposed.
While I am not in the habit of endorsing Orson Scott Card's opinions, he nevertheless brings up many great points about fantasy, science fiction, and gender in How to Write Science Fiction & Fantasy. Basically, Card questions the utility of drawing the distinction between fantasy and sci-fi, pointing out that the main difference between them is that one uses machines and the other uses magic. Is there really a difference, say, in a time-travel story that uses a magical spell as opposed to one which uses a time machine? Even if the stories are otherwise comparable? Can we really say that one has more "basis in fact" than the other? To me, and to Card, the answer is, "not really." There are certainly differences in popular associations of sci-fi and fantasy, including a very gendered conception. ("Girls like fantasy, boys like sci-fi.") But, both ultimately, are two facets of the same genre of fantastical adventure. Even bookstores recognize this, typically putting sci-fi and fantasy books in the same section. Many magazines, likewise, are for both science fiction and fantasy.
Baron-Cohen--who I doubt is very familiar with either subgenre--is insistent on separating science fiction out as not-fiction, in the interest of perpetuating stereotypes. This distinction isn't really an intellectually valid one, however, and merely points to Baron-Cohen's own tendency to stereotype autistic people--oftentimes in a way which renders autistic girls and women relatively invisible.
And this doesn't even get to the arbitrary distinctions between literary and genre fictions! (i.e. the idea that Margaret Atwood is a literary author, while Octavia Butler is just a really good sci-fi writer. Again, this doesn't make much sense.)
Baron-Cohen's insistence on separating out "history" from fiction is equally curious to me. I don't know if he means history billed as nonfiction--in which case he is suggesting the old idea that all history is essentially fiction. (As an aspiring historian, I cannot support this assertion.) If he is referring to historical fiction, then this is yet another instance of nonsense and silliness masquerading as legitimate diagnostic criteria. Most books explicitly labeled historical fiction bear very little relation to history. Again, there is a much sounder argument that contemporary novels bear greater relation to reality, however we choose to define it.
If anyone here is displaying "impairments of imagination" here, I think perhaps it is Baron-Cohen. He cannot imagine Asperger's autistic people outside of his male engineer/sci-fi geek paradigm. This does not mean that we lack imagination, that the only fiction we read and watch is of the explicit sci-fi variety, or that only 10% of us are female. There is much evidence which suggests otherwise.
Baron-Cohen has repeatedly shown a willingness to allow his pre-existing assumptions to interfere significantly with his researcher. This does not make for good science or sound neurodiversity advocacy.
Long-time readers will know that I have some disputes with Baron-Cohen. These are not simply ideological disputes--I believe Baron-Cohen to be a sloppy researcher and frankly am amazed that he is considered to be an "expert" in the field of autism. His eminence in the field does not speak very well of the autism research community's ability to produce quality research free from stereotypes and assumptions. And Baron-Cohen, of course, produces stereotypes on at least two fronts: gender and neurotype.
When reading Baron-Cohen's work, published in 2006, I couldn't help but wonder what is actually new about the criteria he is proposing (hereafter referred to as AAA, Adult Asperger Assessment). Because the criteria itself largely looks like a more specific and stringent version of the DSM IV; there does not seem to be much attention to adult-specific issues, and there certainly isn't much attention to gender-specific issues. Gender issues nevertheless pervade the report in ways which are not adequately addressed.
This study has a male/female ratio of 9:1 (rounded down). This ratio is, quite simply, horse manure, and even many researchers and clinicians are beginning to recognize it as such. The gender ratios for other forms of autism are often closer to 4:1. Why would Asperger's autism have a gender ratio more than twice that of other forms of autism? Baron-Cohen is simply regurgitating old, tired ideas about Asperger's autism, including the outdated 10:1 ratio.
Moreover, Baron-Cohen's definition of Asperger's autism is clearly infused with very stereotypic notions about autism which are both confining and expressed in a way which clearly portrays autistic people as defective normal people. I remain flummoxed why so many autistic people see Baron-Cohen as a pro-neurodiversity figure. At best, he's promoting a very shallow concept of neurodiversity which suggests that we're only valuable in so much as some of us are talented engineers and mathematicians. Our worth is not contingent on our abilities, or our disabilities, but rather our common humanity and rights which we share with all other human beings.
When so many professionals already have silly stereotypes about autistic people, I can only hope that Baron-Cohen's "AAA" criteria do not take hold. While there are certainly issues with the DSM IV, at least it does not suggest that all autistic people lack imagination and read only certain kinds of books.
It is this part of criteria (part D) which is most troubling to me, and also the part where Baron-Cohen's ridiculousness is most apparent. See D1:
Either lack of interest in fiction (written or drama) appropriate to developmental level or interest in fiction is restricted to its possible basis in fact (e.g. science fiction, history, technical aspects of film.)
-doesn't particularly enjoy reading fiction
-would rather go to a museum than the theatre
This particular criteria conveniently embodies everything that's wrong about Baron-Cohen's AAA. Therefore, I will analyze it in detail:
1. The wording seems more appropriate to children than to adults. When we're talking about adults, "developmental level" hardly seems like appropriate terminology. You rarely hear people discuss "developmental level" in regards to neurotypical adults. What is "appropriate development" for adults in terms of reading preferences and is it any different at 65 than 22?
2. What defines "appropriate developmental levels" in terms of reading at any age? Is the adult who loves Harry Potter (i.e. me) not reading according to hir "appropriate level"? Is the advanced reader who reads the classics at age 8 not appropriate? What about autistic people with dyslexia or other learning disabilities?
3. Baron-Cohen tries to be more specific than the DSM IV, but ends up being even more vague in many ways. How is it diagnostic to prefer going to a museum rather than a theater? And heck, how are these abstractions meaningful in any way? There are lots of different kinds of museums, and lots of different films/shows shown at theaters. If I were asked this question in a diagnostic assessment, I would say that I need much more detail in order to answer this question. What kind of show or movie would I be attending? What kind of museum would I be visiting? What would the situation be like sensory-wise at both locations? What about autistic people who like going to watch documentaries (non-fiction) or lectures in theaters? Doesn't that totally challenge Baron-Cohen's simplistic ideas?
I may be an Official Asperger's Autistic, but I definitely would not be interested in going to a crowded and noisy museum regardless of what was being exhibited. I certainly wouldn't want to go in a museum with subject matter that I find uninteresting. I do, however, often enjoy going to movies and musical productions if it's something I want to see. Blanket assumptions such as those made by Baron-Cohen are ultimately rather useless.
4. Why are certain forms of fiction (i.e. science fiction) arbitrarily exempted from the category of "fiction"? Because this makes absolutely no sense at all, when we look at it without preconceived stereotypes. How is a book about aliens and spaceships any more "restricted to its possible basis in fact" than a story about living in modern-day New York City? If anything, the contemporary story is clearly more rooted in fact. In his attempt to perpetuate the stereotype that autistics "lack imagination" and don't read fiction, except for those sci-fi geeks, Baron-Cohen ends up producing a diagnostic criteria which is silly and nonsensical. This, folks, is diagnostic gerrymandering at its finest, and it needs to be vigorously opposed.
While I am not in the habit of endorsing Orson Scott Card's opinions, he nevertheless brings up many great points about fantasy, science fiction, and gender in How to Write Science Fiction & Fantasy. Basically, Card questions the utility of drawing the distinction between fantasy and sci-fi, pointing out that the main difference between them is that one uses machines and the other uses magic. Is there really a difference, say, in a time-travel story that uses a magical spell as opposed to one which uses a time machine? Even if the stories are otherwise comparable? Can we really say that one has more "basis in fact" than the other? To me, and to Card, the answer is, "not really." There are certainly differences in popular associations of sci-fi and fantasy, including a very gendered conception. ("Girls like fantasy, boys like sci-fi.") But, both ultimately, are two facets of the same genre of fantastical adventure. Even bookstores recognize this, typically putting sci-fi and fantasy books in the same section. Many magazines, likewise, are for both science fiction and fantasy.
Baron-Cohen--who I doubt is very familiar with either subgenre--is insistent on separating science fiction out as not-fiction, in the interest of perpetuating stereotypes. This distinction isn't really an intellectually valid one, however, and merely points to Baron-Cohen's own tendency to stereotype autistic people--oftentimes in a way which renders autistic girls and women relatively invisible.
And this doesn't even get to the arbitrary distinctions between literary and genre fictions! (i.e. the idea that Margaret Atwood is a literary author, while Octavia Butler is just a really good sci-fi writer. Again, this doesn't make much sense.)
Baron-Cohen's insistence on separating out "history" from fiction is equally curious to me. I don't know if he means history billed as nonfiction--in which case he is suggesting the old idea that all history is essentially fiction. (As an aspiring historian, I cannot support this assertion.) If he is referring to historical fiction, then this is yet another instance of nonsense and silliness masquerading as legitimate diagnostic criteria. Most books explicitly labeled historical fiction bear very little relation to history. Again, there is a much sounder argument that contemporary novels bear greater relation to reality, however we choose to define it.
If anyone here is displaying "impairments of imagination" here, I think perhaps it is Baron-Cohen. He cannot imagine Asperger's autistic people outside of his male engineer/sci-fi geek paradigm. This does not mean that we lack imagination, that the only fiction we read and watch is of the explicit sci-fi variety, or that only 10% of us are female. There is much evidence which suggests otherwise.
Baron-Cohen has repeatedly shown a willingness to allow his pre-existing assumptions to interfere significantly with his researcher. This does not make for good science or sound neurodiversity advocacy.
Tuesday, January 5, 2010
A Sad Story, and a Call to Action
If you listen to anything autism- or disability- related today, listen to this interview with Carole Reynolds, whose 11-year old autistic grandson Zakhquerey Price is facing felony charges for allegedly injuring two staff members at Beard Elementary (Fort Smith, AK) while said staff members were trying to restrain him.
Zakh's story is really heartbreaking, and demonstrates so many problems with public education, the system of mental institutionalization, and criminal justice system.
Zakh has already faced years of forced institutionalization, including during a period in which he and his family mourn the loss of his sister. Now, he faces criminal charges without adequate legal representation. His family cannot afford a private lawyer, and the public defender assigned to his case does not know much about autism. With the current situation, there is a strong chance that Zakh will be institutionalized against the will of his family again. Zakh has already faced years of institutionalization due to a school system which wants to not educate him. He has also been institutionalized during a period in which he and his family are mourning for his younger sister, who died during his period of incarceration in mental institutions.
What can we do to help?
You can donate to Zakh's family so that they might obtain adequate legal representation.
You can contact media outlets about this situation.
You can join the Facebook group to follow the situation and see what else we can do to help Zakh and his family.
This is urgent. Zakh's case is on January 12.
We need to do whatever we can to help.
Zakh's story is really heartbreaking, and demonstrates so many problems with public education, the system of mental institutionalization, and criminal justice system.
Zakh has already faced years of forced institutionalization, including during a period in which he and his family mourn the loss of his sister. Now, he faces criminal charges without adequate legal representation. His family cannot afford a private lawyer, and the public defender assigned to his case does not know much about autism. With the current situation, there is a strong chance that Zakh will be institutionalized against the will of his family again. Zakh has already faced years of institutionalization due to a school system which wants to not educate him. He has also been institutionalized during a period in which he and his family are mourning for his younger sister, who died during his period of incarceration in mental institutions.
What can we do to help?
You can donate to Zakh's family so that they might obtain adequate legal representation.
You can contact media outlets about this situation.
You can join the Facebook group to follow the situation and see what else we can do to help Zakh and his family.
This is urgent. Zakh's case is on January 12.
We need to do whatever we can to help.
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