The Trouble with Long Shots ...

... is that they so rarely hit their targets.

The long shot to which I refer is John Elder Robison's three-year effort to nudge Autism Speaks's research funding priorities toward therapies that help make autistic people's lives easier, as opposed to determining causes and finding ways to prevent more autistic people from being born.

From a 2010 blog post explaining his reasons for accepting the position:

One of my principal areas of concern will be identifying and funding studies that have high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS [i.e., transcranial magnetic stimulation] work I'm involved in at Harvard/Beth Israel is a good example of work that can lead to better lives for today's autistic population. 

... 

In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That's going to be a real challenge because the views of different people on the spectrum are so widely divergent. 

When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization's focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.  

... and another one going into greater detail about his role on the advisory board and how he hoped to make use of it:

... [T]he [research] proposals that made it through the initial screening reach the review board - the place I serve. Proposals are dealt out to members of the board for a first ranking. Much of the time, three reviewers read each proposal. They may be assigned randomly, or they may be dealt out by expertise. However they are allocated, if there are 30 of us on the board, and there are 100 proposals to deal with, we will each be assigned ten.


We will rate the proposals we are given in several areas, like the impact on the community, how likely the work is to succeed, and whether it's truly new research or a rehash of something already covered. Each area is scored from 1-5, or perhaps 1-7. So a proposal that I (or any of us) rated 4,4,5,5,3 in each of five areas would have a composite score of 4.2. 

The three initial reviewer scores are combined for a total score, and proposals are ranked based on this first pass. At that point, staffers take the funds available for allotment and they see how far down into the ranks the money goes. For example, if we have twenty million dollars to distribute, that might be enough to fund the top third of the applications.

Given that, the agency takes all the proposals in the top third, plus a cut of the next tier, for final review. That's where we all discuss them, and we all vote. And that's where any one voice can matter a lot. I'll give you an example. Let's say a piece of research involves social skills training, and most of the scientists give it a 3 for importance. But I feel that it's a really important proposal, based on my life experience, so I speak up. By doing so, I cause people around the room to rethink the proposal's importance, and a number of people move their score from 3 to 4 or even 5. The result: that proposal's average score rises, which moves it from "not good enough to fund" into the "recommended for funding" category.

Now, following the publication of this op-ed article from Autism Speaks founder Suzanne Wright on the organization's website, Robison has resigned from both of the boards he had been sitting on.

Here is his post explaining why he did that.

I care about this, and am saddened that Robison feels like he hasn't been heard, even though I pretty much consider Autism Speaks to be the enemy, because I did have a sliver of hope that he could shift their priorities a little, and through them get funding for projects that might help people, and that might not get any funding otherwise*. (It's not like the NIH or NSF are drowning in money these days ...)

Now that he's stepped down, that sliver of hope is gone. I have no reason to extend even the slightest, most infinitesimal modicum of goodwill to Autism Speaks. 

It had already been my practice to discourage people who wanted to Do Something for Autism from donating to them and recommending other charitable organizations that do more for actual autistic people, so I guess I will be doing more of that! I will also be contacting my Representative and Senators and telling them that Autism Speaks doesn't speak for most autistic people, and that they should not think that allocating money to them will make any difference to autistic people or their families.

Once again, here is a list** of autism-related charities*** I consider more worthwhile than Autism Speaks:

AAPD - American Association of People with Disabilities

AASPIRE - Academic Autistic Spectrum Partnership in Research and Education

ADAPT

ASAN - Autistic Self Advocacy Network

Autistics.org

AWN - Autism Women's Network

DREDF - Disability Rights Education and Defense Fund

Easter Seals

National Disability Leadership Alliance

National Disability Rights Network

NOEWAIT - National Organization to End the WAITlists

Not Dead Yet

SABE - Self Advocates Becoming Empowered

TAAP - The Autism Acceptance Project

TASH

The National Council on Independent Living

*They still would have been the enemy, and I still would've encouraged people not to donate to them, and my ideal scenario would still have been that they should dissolve, and clear the field for less harmful organizations. But people can work on that objective while other people --- like Robison --- work on others, like getting more of their grant money to projects that might help improve quality of life for some autistic people! We can walk and chew gum at the same time. (Well, metaphorically if not literally. I cannot literally walk and eat something at the same time, but I can simultaneously favor more radical long-term strategies and short-term harm-reduction measures. My mind is nimbler than my body.)

**There are going to be more names on this list than there were the last time I did this, because I've found out about more organizations.

***Includes cross-disability organizations

Making the Genes Fit: Genetic Explanations for Autism and Their Political Implications

EXECUTIVE SUMMARY: Political-science professor Kristin Bumiller has written another long article on the politics of autism; while her earlier article focused on the neurodiversity movement, this article is mostly about mainstream autism advocacy in the vein of Autism Speaks. In it, she argues that mainstream discourse about autism assumes that autism is a genetic condition, and that this assumption is insufficiently backed by evidence. She spends most of the article detailing the political implications of this assumption, which are 1) funnelling most activism on the part of families of autistic people into relatively narrow channels of corporate-philanthropic fundraising for biomedical autism-research initiatives, rather than calling for broader social changes that might benefit autistic people; and 2) making disability an individual, rather than a social, issue.

She introduces several concepts over the course of developing those themes: "geneticization" --- a process by which the preferred explanation for sickness and disability is that some people are genetically susceptible to certain illnesses; "genetic citizenship" --- an ethic of individual responsibility for health, and for knowledge of one's genetic predispositions; and "life optimization" --- a strategy for making the most of one's (or one's child's) life chances given a certain set of genetic predispositions. She makes the case that the latter two of these things are logical responses to a genetic understanding of disease and disability in a "neoliberal welfare state" like the U.S., but also that they are inherently coercive and inegalitarian.
____________________________________________________

Looking through the online archive of the women's-studies journal Signs, I found another article on autism by the political scientist Kristin Bumiller. (I did a series of three posts a while back about her 2008 article "Quirky Citizens: Autism, Gender and Reimagining Disability," which I thought made a lot of really good points). The more recent article, published in the summer 2009 issue of Signs, is called "The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy."

That odd word, "geneticization," gives you a clue as to the article's main premise: it implies treating autism as if it were genetic when it may or may not really be genetic.

Here is how Bumiller introduces the term and relates it to autism:

The term "geneticization" refers to the growth of genetics as a means to account for and explain health and disease and the process by which biological conditions constitute social definitions of normality and abnormality (Lippman 1991, 18). Abby Lippman coined this term in a feminist analysis of the growing influence of genetic determinism on public policies and private practices regarding pregnancy and health care and to emphasize the gender, race, and class implications of this trend. In particular, Lippman identified the need to study how genetic interventions affect health management in a variety of economic and social contexts. Feminist scholars have been wary of the coercive and normalizing power of medical professionals, yet they have also demonstrated the complex implications of biomedical advances. As Donna Haraway has persuasively argued, it makes little sense to be "simply oppositional" in response to this new technological future because we are deeply implicated in scientific progress (Haraway 1997, 3).

The shift in the autism field was first generated by the efforts of parents with autistic children, who were responding to regressive beliefs within the medical field. The scientific and popularized explanation for autism prior to the 1980s perpetuated a theory that pathological mothering was at the root of the disorder. Bruno Bettelheim (1979) is especially noted by critics for his view that childhood disturbances associated with autism did not arise spontaneously but resulted from extremely abnormal mother-child relations. Bettelheim's understanding of the condition is drawn from the seminal work of Leo Kanner (1943), who distinguished autism from schizophrenia as an innate or inborn disturbance of affective contact but also thought that the notable coldness and formality of the parents usually had some effect on the development of the condition. The hypothesis that autism can be attributed to a general lack of maternal warmth is called the "refrigerator mother" theory of autism, and it did not come under direct attack until Bernard Rimland criticized it in his 1964 book Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior. Both a parent of a child with autism and trained as a physician, Rimland undertook scientific work and activism that played a central role in recasting autism as a medical condition with distinct psychological symptoms that could potentially be remediated through diet and other therapies. In an era when parents of children with disabilities were beginning to organize and seek legitimacy, parents of autistic children embraced new biological explanations.

She goes on to describe a gradual narrowing of focus from "biological" explanations to specifically genetic ones, starting when researchers conducting twin studies found a strong pattern of heritability in autism. Later research identified a "broad autism phenotype" in parents and siblings of autistic children*, which added to the impression that it runs in families. But research into specific genes has failed to find much --- many candidate genes have been found, but each one only accounts for a tiny fraction of cases of autism. However, this review on the genetics of autism, published this month in Genetics in Medicine, estimates the total proportion of autistic people who have one of the genetic variations discovered so far at about 25%, which is actually a decent-sized chunk. Couple that with the relative newness of microarray-based comparative genomic hybridization --- the technique responsible for turning up a lot of these candidate genes --- and you see that it might be a bit premature to declare genetic research moribund**.

Kristin Bumiller thinks the continued assumption that autism must be a genetic condition has persisted beyond what the available evidence argues for, and that the idea that it may have environmental triggers is dismissed too readily. (I think the issue of whether the case for a genetic basis for autism is overstated or not is a bit more complicated; see above paragraph).

I do not argue with her assessment of the different political implications of genetic vs. environmental causes of developmental disability; if the former idea (i.e., that it's genetic) is widely believed, then each citizen is responsible for knowing hir own genetic status and making whatever reproductive choices follow from that status, while, if autism and other developmental disabilities are thought to be triggered by some environmental contaminant, then the responsibility falls to the government to enact stricter controls on neurotoxic pollutants. (Both of these scenarios presume a social context whose primary emphasis is on preventing, rather than accommodating, disability. In a less ableist society, deciding whether or not to have children if you're a carrier of [whatever] genes would be much less fraught with emotion and social pressures, although I think we'd want to limit pollution even if we weren't constantly told that developmental disability is a tragic waste of life).

Bumiller calls the individual-responsibility scenario "genetic citizenship": you become a member of a community of people affected by a given genetic disease, and that community advocates for research funding and participates in studies to help speed the development of cures or therapies:

The concept of genetic citizenship has been introduced to describe individuals in the age of biomedicalization who engage in a new style of activism related to their inheritable identities and differential embodiment (Heath, Rapp, and Taussig 2004). This concept is most frequently applied to situations in which individuals and family members affected by a genetic disease come together and take an active role in fundraising, advocating, and influencing scientists in the hope of finding a cure. In the past decade numerous disease-specific advocacy organizations have exercised significant influence over research priorities, affected capital allocation, sponsored gene banks, and demanded collaboration in the pursuit of real progress for people living with genetic diseases (Terry et al. 2007). This participation also takes advantage of new networking opportunities created by the Internet and the emergence of virtual communities. These citizens are seen as having cast off the role of passive patients to become active consumers of health services. As collectivities they have strived to maximize their influence on the development of new science, technology, and medical knowledge (Rose 2007, 23).

Autism advocacy provides an important vantage point from which to evaluate the presumed desirability of genetic citizenship because its activism is complicated by intense controversies about the significance of the genetic link and about the social identities of autistics. With the expansion of biomedical research in the field, much autism advocacy has shifted from promoting the well-being of affected families and children to searching for a cure. These new organizations, now consolidated under the banner of Autism Speaks, primarily promote biomedical research and are modeled on other fundraising campaigns that draw attention to the plight of people who suffer from rare diseases. ...
...
Prior studies of genetic citizenship have raised concerns about how the victories of new genetic movements may reflect a questionable convergence of individual interests and market forces and have noted how research priorities are driven by profit motives (Duster 2003a). Similar issues arise in the context of autism; much of this research is conducted in collaboration with high-profile genetic laboratories and large biotech corporations such as deCODE Genetics. This research is given priority despite uncertainty about whether and how genetic information will eventually be useful for pre- or postnatal genetic screening, diagnosis, or treatment methodologies. Both the irresolution about the potential benefits of genetic research and the oversimplifaction of its significance in the media diminish the power of consumers and the general public to either shift priorities or call for more transparency on the part of medical professionals. Moreover, the current focus on instrumental (and uncertain) goals rather than more broadly framed issues of social justice and welfare limits the role of disease-specific advocacy organizations in setting priorities (Stockdale 1999). Specifically in the case of autism awareness, it has been shown that since public discourse has focused on the medical paradigm --- particularly on efforts to find a cure --- there has been less focus on the rights and social welfare dimensions of the issue.

So there are good and bad things about this trend toward people organizing and cooperating with pharmaceutical and biotechnology companies to raise money and set research priorities. People are able to find other people --- whole communities of people --- who share their circumstances, and can thus pool their knowledge, resources and coping skills in ways they couldn't before, when each person essentially had to work everything out for hirself. That's a good thing; it's also a good thing that people affected by various conditions have a way to tell the scientific and medical communities what they need most.

What's not so good is the fact that the "partnership" between grassroots advocacy groups and corporations is so lopsided; this restricts disease-based activism to the corporate-philanthropic model of fundraising for biomedical research, when it might include that and campaigns for social changes geared toward creating a healthier society.

The other things Bumiller thinks are bad about the "genetic citizenship" model are its tendencies to coerce people into making certain health and reproductive choices, to exacerbate social and economic inequalities, and to put a heavy burden of responsibility on women as guardians of their families' health:

[D]isability activists have illuminated the implications of wide-scale genetic screening for the devaluing of disabled lives, particularly as the lines between state policy and individual choice are becoming increasingly blurred. Despite the well-established obligation of physicians and genetic counselors to provide nondirective advice, studies have found that patients were given information that imposes professionals' views about the usefulness of genetic knowledge and the parental responsibility to promote fetal health (Rapp 1999). This research has shown that professionals effectively delivered the message that the only rational choice is to give birth to a "normal" child. Genetic testing is now understood as a necessary component of preventative public health programs, largely as a result of the trend toward universalized testing and mandatory screening of newborns (van den Daele 2006). This shift has transformed prenatal testing from an option individual women are given to lower their risk of having a child with a genetic defect to a system of reducing overall health problems in the population (Ward 2002). ...
...
The research on prenatal counseling has also shown that professionals often frame genetic testing as necessary for socially responsible parenting. One study found that counselors presented prenatal testing as something women need in order to become good parents (Lippman 1991). In this sense, good parenting is about having the knowledge and resources provided by this testing and then following through in a socially responsible fashion. As genetic testing is fully incorporated as a standard of care for pregnant women, the act of refusal is no longer about the assumption of individual risk. Now, the noncompliant woman has failed to take advantage of an important opportunity to maximize the life chances of her child. Such actions are likely to be seen as contrary to good citizenship in an age of biopolitics, where the technologies of biomedicine have created a context in which "biology is not destiny, but opportunity" (Rose 2007, 51) and the desired course of action is to follow a strategy of life "optimization" (6). This strategy, according to Nikolas Rose, is "not eugenics but is shaped by forms of self-government imposed by the obligation of choice, the desire for self-fulfillment, and the wish of parents for the best lives for their children." He goes on to say that "its logics and its costs deserve analysis on their own terms" (69).

To see this as part of a new regime of choice is to fail to recognize the unintended consequences of life optimization in regard to the regulation of normalcy. A recent ethnographic study on the influence of new genetic knowledge on Belgian insurance companies aptly illustrates this dynamic at work. Ine Van Hoyweghen, Klasien Horstman, and Rita Schepers (2006) investigated how insurers take account of predictive medicine in the process of determining premiums. They describe the companies' decision making as a process of "making the normal deviant" because when insurers make judgments "the margin of being normal is actually quite small and the scope for deviation is quite wide" (Van Hoyweghen, Horstman, and Schepers 2006, 1229). They find that when insurers rate people with genetic predispositions they put extra emphasis on how they have managed their health. ... [I]nsurers impose a greater responsibility for optimally managing one's health on people with known risk factors. The authors' conclusions have serious implications for the social costs of life optimization: "Instead of a 'genetic determinism,' it seems more plausible that we are all subject to different levels of susceptibility. ... As a consequence, ... the individual's lifestyle habits, preventive initiatives and compliant behavior in relation to these susceptibilities could be stressed more" (Van Hoyweghen, Horstman, and Schepers 2006, 1233). The actuarial process imposes a norm that defines suitable lifestyles for people with risky genes. This creates an incentive system for genetic "deviants" to conform to normal expectations of proper lifestyles in order to satisfy social expectations.
...
The concurrent forces of life optimization under conditions of biomedicalization and demands for personal responsibility in a neoliberal welfare regime make the determination of a disabled person's worthiness central to the process of gaining public health resources. The rights afforded to people with disabilities are more available to those who are good genetic citizens and can demonstrate their strict compliance with social norms. For example, special education provisions rely on eligibility and service determinations that are individualized and ad hoc rather than derived straightforwardly from medical diagnosis. As a consequence, parents with poor genetic literacy often have trouble convincing schools that their children's behavior is the result of a biological condition rather than their bad choices as parents. In social security disability determinations, each case is processed according to subjective criteria used to measure a person's ability to work. Studies show that success in claiming disability depends on a person's ability and willingness to persevere through the application process (Bilder and Mechanic 2003). Since most claims are routinely denied and these denials lead to a lengthy appeals process, only those who are unusually skilled at conveying medical knowledge, or at enlisting the assistance of medical professionals, are likely to have their applications eventually approved.

These systematic processes have the effect of distinguishing between disabled people who are at low risk and those who are at high risk for becoming dependent on the state. Social policies that rely on dividing people up according to risk groups also cut against the organic sense of solidarity that develops among people with disabilities (or among their advocates and caretakers). These systems of classification rely on distinctions that are often contrary to a dynamic and inclusive sense of citizenship among people with disabilities. The overall effect of a person's genetic status interacting with other forms of inequality is to create conditions of "cumulative social and economic disadvantage" and consequently to reduce opportunities to participate in civic life (Kelly 2002, 181).

I don't think Bumiller is endorsing any kind of conspiracy theory, or that she believes some secret cabal of biotechnology executives ever held a meeting and drew up a plan to seize control of the emerging wave of health activism. Similarly, I don't think she thinks doctors and genetic counselors are trying to "regulat[e] normalcy"; both of those things just happened, as new technologies and social movements were assimilated into a corporate-dominated, individualistic society. No human masterminds or conspiracies --- indeed, any planning or intention at all --- need ever be involved.

These are all the things I agreed with in Bumiller's article; there's also some stuff I have problems with (besides my differing assessment of the state of research into the genetics of autism), which I will write about in a later post.

Bumiller, K. (2009). The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy Signs: Journal of Women in Culture and Society, 34 (4), 875-899 DOI: 10.1086/597130


*Not everyone who studied relatives of autistic children found this broad autism phenotype --- this 1994 study of 44 families with multiple autistic children found that the non-autistic siblings did not display any noticeable autistic-like traits; "in the vast majority of cases, children [were] either clearly affected or clearly unaffected". But from what I can see, most of the studies published on this topic did find evidence of a broad autism phenotype, although positive results may be overrepresented among published papers just because positive results are more often published than negative results.

**You could still criticize it on other grounds, from the potential for eugenic applications of genetic research to the questionable wisdom of using limited research funds to pursue such theoretical questions ("Where does autism come from?") rather than finding out what works to improve autistic people's lives and enable them to participate in society to a greater extent.

Autism Speaks Interrupts My Etsy Browsing

I was poking around on Etsy when I spotted this:

A beautiful puzzle piece inscribed with the word love. This necklace is meant to show support and awareness for autism of all types.

...

I will be donating 100% of the price of this necklace to Autism Speaks to fund awareness and research.

This annoyed and saddened me, for reasons that will be obvious to anyone who's been following the neurodiversity blogosphere for any length of time.

(If you haven't, here's a brief list of the things autistic self-advocates don't like about Autism Speaks: eliminationist rhetoric*; non-representation/token, non-policy-setting representation** of autistic people within their organization; a poor record of actually providing material help to anyone, even when they've promised to do so; advertisements and "awareness campaigns" that portray autism as a terrible tragedy, and which also portray autistic children as dehumanized burdens on their parents; past endorsement of the wrong and dangerous vaccines-cause-autism hypothesis by the organization's founders; research funding practices that prioritize research into causes of autism while providing little to no funding for research into what kinds of things might help to improve the quality of existing autistic people's lives; a pattern of hostility and/or indifference toward autistic adults who try to engage with the organization; and exploitation and deception of families of autistic children who decide to collaborate with them on "awareness" projects).

It really makes me sad that an organization that does as much harm to autistic people as Autism Speaks does is so well-known and respected. No other autism-related nonprofit comes close to having that kind of name recognition, so you often see well-intentioned people who just want to help autistic people and their families deciding to donate to Autism Speaks, because it's the autism charity they've heard of, and they haven't heard any of our criticisms of it.

I wrote a short, hopefully very nicely-worded message to the other Etsy seller to try and get her to reconsider her decision to donate to Autism Speaks:

Hi, [other Etsy seller].

I really appreciate you wanting to do something to help out autistic people, but I thought you should know that lots of us have serious problems with Autism Speaks. I know it's the leading autism charity, but many of us in the autistic community feel that Autism Speaks is more interested in ridding the world of people like us than it is in helping us. There are other autism-related charities/nonprofits that are also run by autistic people --- the Autistic Self-Advocacy Network is one --- which might be better places to donate your proceeds if you're interested in showing support for autistic people.

Again, I'm sorry if this sounds angry or critical --- I'm touched by your sentiment, and do think you have only the best intentions. I wouldn't badger you with this if the differences between my community and Autism Speaks were any smaller or less bitter.

Thank you for reading, and for your consideration.

[me]

When I was writing it, though, I failed to come up with any other autism charities or nonprofits that are run by and for autistic people other than ASAN, which annoys me because a) there are quite a few, with differing emphases, and b) some autistic people think ASAN is problematic, too.

So, here are some of the other, more autistic-people-friendly autism organizations:

Academic Autistic Spectrum Partnership in Research and Education (AASPIRE)

Autism Network International (ANI)

Autism Women's Network (AWN)

The Autism Acceptance Project (TAAP)

... and here are some cross-disability organizations:

ADAPT

Self Advocates Becoming Empowered (SABE)

TASH

The National Council on Independent Living

EDIT 4/14: There are a couple of other organizations I want to mention, too: Autistics.org (which Meg Evans suggested in comments) and NOEWAIT, the National Organization to End the Waitlists, which is dedicated to improving access to support services for all developmentally disabled people.

*This should really be its own post, but here are a few examples: a video released in 2006, "Autism Every Day," included a scene in which then-Senior Vice President Alison Tepper Singer (who has since resigned from Autism Speaks over the vaccine issue) speaks about a fantasy she had of driving her car off a bridge with her autistic daughter and herself in it, and about how the one thing that prevented her from acting on it was her desire not to leave her normal daughter an orphan; a documentary called "Autism: True Lives" included a similar scene in which Harry Slatkin, husband of Autism Speaks board member Laura Slatkin, talks about both worrying and also almost hoping their autistic son might fall into a pond in their backyard and drown; a statement in Parade magazine by Autism Speaks co-founder and board member Suzanne Wright that their goal is to "eradicate autism for the next generation"; and innumerable video spots comparing autism to various terminal illnesses like cancer and AIDS, or to catastrophic, life-threatening events like car crashes, lightning strikes and kidnappings.

**While I think their addition of John Elder Robison for having no autistic board members --- other self-advocates are more cynical, and don't think anything will come of it. (See Sarah, ABFH, Clay, and also John Elder Robison's own assessment of his role on Autism Speaks's scientific advisory board).

One of These Things Is Not Like the Others

On this week's "Autism Friendly Sunday" post, Gonzo discusses something she calls the "my 2 cents"* phenomenon: everyone knows autism is a Very Bad Thing, and thus the idea that autistic people might want to be left alone to be autistic really sticks in most people's collective craw**.

This notion --- that, since it's self-evident that autistic people have lots of trouble living in the world, it must be that autistic ways of doing things are maladaptive, and thus the best way to help autistic people is to teach them to do things the way non-autistics do --- leads to a lot of obstreperous bickering within the autism community***.

As an example, Gonzo cites this comment on Sarah's post criticizing Athletes Against Autism:

My2Cents said...
...[W]hat you, speaking to [previous commenter] specifically, seem to be forgetting are the children with autism that (sic) can't speak, don't hold eye contact, are unable to function and may never be able to take care of themselves. By just fighting FOR people with autism, it is basically a resignation and acceptance of the condition. "Oh shit, he's autistic, nothing we can do now. Let's just accept it." Yeah, I think I'd rather fight it.

Notice the list of Horrible, Life-Altering Serious Impairments that come with autism. Not holding eye contact? Really?

Even taking its inclusion at face value --- i.e., accepting that presence or absence of eye contact does make a significant difference to a person's quality of life --- the presence of such a minor, superficial detail on such a list would seem to argue far more strongly for a significant role for social biases predisposing autistic people to lives of disability and dependence than anything else.

*What would that be in Euros?

**Yes, Gonzo and I both owe a lot to Twisty Faster in terms of writing style.

***That phrase is really contentious; many autistic bloggers use it to refer to the community of parents, doctors, educators and careworkers who are the experts most frequently consulted on matters of how best to help autistic people. This "autism community" is often contrasted with the "autistic community" of self-advocates. Here, I use the phrase "autism community" to refer to both groups, although this is a fairly nonstandard usage. The commenter I go on to quote, for instance, uses it in the more exclusive way I just described.

Autism-Related News and Miscellany

I found out from ABFH that GRASP's Michael John Carley has been reaching out to Autism Speaks's Alison Tepper Singer. Well, actually I already knew that, being a subscriber to the GRASP newsletter: what was news to me was that the "understanding" promised seems to be only one-way.

Two years after Carley wrote these paragraphs,

It's probably very traumatic for the parent of the severely-affected child to be lectured on the immense potential inherent in the brain and ability of a person on the spectrum. If, when they ask for help, they were to be told no, because their child might have a [Nobel] prize in him, I can imagine fewer injustices that would be larger than that. Wouldn't that seem to insultingly invalidate (sic) all the hardship they were going through?

Wouldn't it also be equally scary for someone on the spectrum who is desperately seeking positive self-images to be lectured by the world that his life will be, or is, awful? (emphasis mine)

the founder of Autism Speaks, Suzanne Wright, wrote a short article for Parade magazine including these lines:

Some may view autism as the disease du jour, the cause of the moment. That trivializes what many are enduring. Families are literally going broke trying to provide their children with the services they deserve. Adults with autism are failing to meet their potential.
...
We're now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we'll get there in my lifetime. (emphases mine)

Now, in theory I am all for outreach efforts; I think autistic adults are the very people parents of autistic children could most benefit from talking to. But a problem arises when the two sides (and it's to be pointed out that GRASP is hardly an all-inclusive autistic self-advocacy group; ASAN might have been a better choice), rather than meeting in the middle, meet far to one side because only one party is willing to compromise. We've seen how well that works in the past, oh, twelve years of US politics, with the Democrats' steady march to the rightward-creeping "center" while the Republicans stay planted on the far right. It's nasty. All sorts of groups --- women, gays, people of color, poor people, non-Christians, disabled people, transpeople, immigrants --- suffer from a political discourse that shunts them aside in favor of courting rich, white, married Christian men ad nauseam. I don't want that to happen to the autism community, with the interests of nonverbal or multiply disabled autistics thrown aside in favor of a civil accord between "passing" Aspies/HFAers and the cure-autism-now crowd.

In the comments on ABFH's post, I found this post by Socrates rounding up autism-related UK news stories. It wouldn't have been of much interest to me (except for the bit about a new autism prevalence study --- I am quite confused about the actual prevalence, having seen a post at Autism Crisis casting doubt on the more recent figures) if it weren't for the mention of Maxine Aston near the end of the post.

Finally a New Year Quiz:

Who said "Living with an autistic man can give you cancer", was it?

a) Tony Blair
b) Groucho Marx
c) Karl Marx
d) Maxine "would you like to buy a signed copy of my book" Aston.

Curious to see if she really said that, I headed over to her site, specifically the page on Cassandra Affective Deprivation Disorder. (Cassandra disorder is Aston's name for her notion that relationships with one autistic partner and one NT partner subject the NT partner to cruel emotional deprivation, putting the NT partner into a depressive state Aston compares to that of SAD sufferers in winter).

I found she does indeed say that: on the "Healing of Cassandra" page, she lists all the physical and psychological symptoms that she thinks can be blamed on the autistic partner's obtuseness and unintentional cruelty:

Physical Effects

• Migraines
• Loss or gain in weight
• PMT/female related problems (I think PMT might be what we Yanks call PMS?)
• ME (myalgic encephalomyelitis) (Might be the same as Chronic Fatigue syndrome)
• Low immune system - colds to cancer

There was also

Mental Health

• Anger turned to depression
• Anxiety
• Phobias - agoraphobia - flying - social
• Asperger ways
• Complete breakdown
• Medication and therapy

OH MY GAWD ASSBURGERS IS CONTAGIOUS!!!!1!

The "Mental Health" list reminds me a lot of Edgar Allan Poe's poem "The Raven" --- disproportionate emotional response to random events. We don't read that poem and feel angry at that horrible, heartless Raven who drives the speaker into catatonia; we can see that the speaker is egging himself on, realizing that the bird can only say one word and deliberately asking it questions that stoke his emotional fires. We decide that the speaker must have already been in pretty bad shape before the Raven ever tapped on his door.

None of this, of course, should be taken to minimize anyone's experience of real emotional abuse, but I do not believe merely being autistic and having an NT romantic partner constitutes abuse. Indeed, Aston's own work (reported in her book --- yes, I bought it --- Aspergers in Love) indicates otherwise. She tracked a bunch of mixed autistic/NT couples and found many successful ones, and that the major predictor of success was awareness that the autistic partner was autistic. A clear understanding of one's own, and one's partner's, nature and limitations is always going to make for a healthier, more realistic outlook on the relationship.

When I mentioned this disparity before on ABFH's site, another commenter (Alyric) told me that Aston probably had an editor breathing down her neck when she wrote the book, preventing her from going off into "autism = abuse" territory. Seeing her site, I think that's a reasonable explanation. (I'm going to give my partner cancer? Really? And PMS too? --- That'll be quite a trick, since he's a guy).

That brings me to the other thing that's bugging me about her site: despite mentioning on the Cassandra homepage that both men and women can get the disorder, the entire rest of the site's content proceeds from the assumption that the "Cassandra" is female, and her callous autistic partner is male*. The whole thing frankly reeks of heteronormativity and "Men are from Mars, Women are from Venus"-type essentialism, with the male stereotype in this instance also being pathologized.

*In her book, Aston does talk about autistic women in relationships, though she says the women are much more likely to be in relationships with other autistics than the men. I should research that --- both to confirm it, since Aston is clearly not the most trustworthy, agenda-free source, and to see if I can't find out why --- it could be very interesting to explore that little difference, if it in fact exists, from a feminist perspective.