Cat in a Dog's World

Blogging Attwood's Defense I

2009-07-13T22:23:00.000-07:00

Part I: Extremism and Politics

Tony Attwood recently defended himself from various criticisms on Donna Williams' podcast. I certainly approve of Attwood's decision to express himself through a podcast run by an actual autistic people--as oppossed to a parents' group or partners' group. However, I feel that he remained rather disingenuous--and at times, said things which are quite simply falsehoods. This is the start of a series which will critique Attwood's commentary and explain why it is rather lacking from the perspective of (many) autistic self-advocates. I also think this series is a good way in which to explore various issues which arise in autism advocacy. This post will address the disparagement of "extremism" and "politics."

First, a few words of wisdom from vastly different sources:

"“I would remind you that extremism in the defense of liberty is no vice! And let me remind you also that moderation in the pursuit of justice is no virtue.”
--Barry Goldwater, whose political views I generally do not share

"Was not Jesus an extremist for love -- "Love your enemies, bless them that curse you, pray for them that despitefully use you." Was not Amos an extremist for justice -- "Let justice roll down like waters and righteousness like a mighty stream." Was not Paul an extremist for the gospel of Jesus Christ -- "I bear in my body the marks of the Lord Jesus." Was not Martin Luther an extremist -- "Here I stand; I can do none other so help me God." Was not John Bunyan an extremist -- "I will stay in jail to the end of my days before I make a butchery of my conscience." Was not Abraham Lincoln an extremist -- "This nation cannot survive half slave and half free." Was not Thomas Jefferson an extremist -- "We hold these truths to be self-evident, that all men are created equal." So the question is not whether we will be extremist but what kind of extremist will we be. Will we be extremists for hate or will we be extremists for love? Will we be extremists for the preservation of injustice--or will we be extremists for the cause of justice? In that dramatic scene on Calvary's hill, three men were crucified. We must not forget that all three were crucified for the same crime--the crime of extremism. Two were extremists for immorality, and thusly fell below their environment. The other, Jesus Christ, was an extremist for love, truth and goodness, and thereby rose above his environment."
--Martin Luther King Jr., whose religious beliefs I do not share.

To the podcast:

-Beginning: Attwood and Donna discuss the history of autistic-to-autistic communications via the Internet. I feel like they're setting up a false "golden age of autism on the Internet." That's the fallacy of nostalgia. In any case, Attwood and Donna disapprove of "militancy" and "extremism." My selection of quotes should indicate how I feel about that. Simply put, Attwood and Donna (hereafter abreviated as A&D) are engaging in an ad hominem attack by casting their ideological opponents as "extremists" rather than engage with the issues or actually explain what is so "extreme" about their (our) views. Using the "extremist" label does not make for serious engagement and argumentation. It rather reminds me of our vote-grubbing politicians.

Throughout the interview, A&D repeatedly cast themselves as "moderates." Donna in particular insists that just because her views are often moderate does not mean she doesn't have convictions. Okay, fair enough. But it is too easy to fall into the opposite trap: argument to moderation. (Also known as "the fallacy of the middle ground" and, my personal favorite, "the Goldilocks fallacy.") Just because a position is between two "extremes" does not make it correct. "Extremists" have been completely right before, and they will be completely right again. It is too easy to confuse moderation with ethical and intellectual correctness.

-A&D also refer (somewhat disparigingly, IMHO) to the "political" wing of autistics, by which I can only assume they mean us neurodiversity folks. Now, "politics" as a concept has a bad reputation in our society. The word rather conjures up images of smarmy and corrupt men making shady backroom deals and hoodwinking the public. But political practices, I would argue, extend beyond these stereotypes. Maybe I'm a victim of my liberal arts' education, but I believe that most things--indeed, almost all things--are in some way connected to politics. Granted, some things are more obviously political than others. But few matters of substance are completely devoid of political content, and the idea of an individual somehow resting "above" politics is a myth. Tony Attwood and Donna Williams have particular opinions, opinions which might be described as political. They are part of the public, political discourse around autism. It really is that simple, and it is folly to pretend otherwise.

I and other neurodiversity advocates are quite sincere in our desire for constructive dialogue. When we're pilloried for being "political," "militant," and "extremist," that can't happen.

Links: Positive Representations Edition

2009-07-13T09:36:00.000-07:00

For a nice change of pace, I thought I'd point out a few positive representations of autism and autistic people.

-First, I want to recommend Ruby's World, a great sci-fi webcomic by an autistic artist and with several autistic characters, and other characters who are different from the norm. The artist also happens to be my wonderful boyfriend. Go check it out.

-Second, I'd like to point out a wonderful article by Tyler Cowen in the Chronicle of Higher Education, entitled "Autism as Academic Paradigm." There's too much excellent content to quote all of it, but here are a few select bits:

A lot of people at colleges are aware of dealing with autism (and Asperger's syndrome; I will refer generally to the autism spectrum) in their "special needs" programs. The more complex reality is that there is a lot more autism in higher education than most of us realize. It's not just "special needs" students but also our valedictorians, our faculty members, and yes — sometimes — our administrators.

In many areas of human neurodiversity, including autism, we still don't know the answers to many basic questions. There is still not even agreement on the basic definitions of autism, Asperger's, and related concepts. In the meantime we are applying lots of stereotypes and negative descriptions to autistics that we would not dream of using to describe racial or ethnic groups. It's high time that colleges and universities got out in the lead to fight these common prejudices. The rhetoric coming out of higher education needs to match up to the reality of higher education as a common avocation for autistic people.

Embrace individualism. Question your stereotypes. Maybe even look in the mirror. When you're done, it's likely that you'll see far more talent, in far more unorthodox varieties, than you expected.

Professor Cowen, thank you very much. When Inside Higher Education runs awful, insulting blog entries about autistic people, and academia in general remains oblivious to autistic perspectives, it's wonderful to see an article in the Chronicle which so thoroughly addresses the issues of autistic people in academia--not just as objects of representation, but as active participants in the academy. While autistic people do still face barriers in the academic world too often, it is wonderful to see an acknowledgment that autistic people have always been there.

-Cowen points out several egregious examples of bad autism representations from academics, but not all academics who write about autism fall into that trap. In particular, Kristin Bumiller of Amherst College has published a few articles which examine autism and the neurodiversity movement from a women's studies/disability/political science perspective. Unfortunately, one needs access to academic journals to read them, but here are the citations for anyone interested:

Bumiller, Kristin. "The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy." Signs: Journal of Women in Culture and Society 2009, vol. 34, no. 4.

Bumiller, Kristin. "Quirky Citizens: Autism, Gender, and Reimagining Disability." Signs: Journal of Women in Culture and Society 2008, vol. 33, no. 4.

I need to read Bumiller's work before commenting more fully, but applause to her for a willingness to treat the neurodiversity movement as a serious political movement, and to Signs for publishing these works. And for actually talking to autistic people in conducting autism-related research. A radical concept, that.

The "Science" of Cassandra

2009-07-10T14:56:00.000-07:00

How do you create a mental disorder for fun and for profit? Why, you use a pre-existing condition with valid scientific research behind it to draw a false analogy, of course. Maxine Aston's latest book does this in a particularly disingenuous way, for instance saying that "SAD is very real" (124), without providing any evidence that "CADD" is real. "CADD" needs to prove its existence independently. It cannot simply be accepted on the basis of SAD's widespread acceptance within the medical community.

PubMed Search Results for "seasonal affective disorder": 1197
Pub Med Search Results for cassandra affective deprivation disorder: 0*

*I did the search without quotation marks so as to be more potentially inclusive of the terminology. It didn't matter.

Similarly, Aston's description of CADD "symptoms" are so vague that they could apply to anyone who's going through a rough patch with their physical and/or mental health. The section in which "physical symptoms" are discussed is particularly troubling:

Physical Health

-Migraines
-Loss or gain in weight
-Premenstrual Tension (PMT)/female related problems
-Low immune system - colds to cancer.

Wow. Living with an autistic person can cause everything from colds to cancer, apparently. Should we be required to wear surgeon general's warnings around our necks? Can we be sued for creating a carcinogenic environment a la Erin Brokovich?

This hate speech is dangerous beyond its obvious implication for autistic people. I really don't think Aston's doing any favors to non-autistic partners who might be tricked into thinking that they are suffering from CADD. Apparently it hasn't occured to her that serious migranes, unexplained changes in weight, problems with the menstrual cycle or other "female related problem", and a weakened immune system might be symptoms of actual illnesses. I would hate for someone to read this book and dismiss a potentially serious illness as the result of simply living with an autistic partner. No doubt Aston thinks she is being very compassionate and pro-woman in this presentation of the issue, but she's really not. Many women (of all neurotypes) already constantly get told that their physical problems are all in their heads. Casting blame on autistic people, and displacing the problem onto a nonexistant "syndrome" really doesn't help the problem.

McKinnon Discussion Misses the Point

2009-07-05T11:13:00.000-07:00

So the news and blogosphere is abuzz with discussion of Gary McKinnon, the British autistic man who hacked into the Pentagon looking for UFOs. I'm personally frustrated that a lot of discussion of the situation seems to miss the point in a major way, as also evidenced by this (older) discussion of the case at The New York Times News Blog. (On a side note, I know rationally that not reading the comments on "mainstream" blogs will probably make me a happier person, but I can't help myself. Must be Asperger's. (end sarcasm)).

I personally don't consider it worthwhile to discuss whether people with AS understand right and wrong, and whether we are to be seen as competent and responsible for our own decisions. To me, this is so self-evidently true that I am not particularly inclined to discuss it with those who disagree--those who would infantalize us. But amidst all this talk about Asperger's and the "AS defense," a few more basic points are being lost. Namely, regardless of McKinnon's disability, he is a victim of stupid and draconian laws which are unjust for everyone of any neurotype.

I understand that Americans are concerned--sometimes to the point of absurdity and myopia--about "terrorists." Okay, sure. But a law which dictates that any individual who commits a particular crime must be extradited and must face a minimum sentance of 60 years is just a stupid law not befitting a free, democratic country. Now, far be it from me to defend actual terrorists who hack with the intentions (or effects) of harming people. In those cases, by all means lock them up for a really long time, after a fair trial and conviction. But the assumption that anyone who commits a particular crime is a "terrorist" is absurd. Courts should be permitted to exercise discretion based on individual circumstances, to differentiate between sci-fi geeks and members of al-Quaeda.

And I would say the same for any non-autistic person accussed of committing the same crime under the same circumstances.* In this instance, we need to stop making this discussion about autism, and start discussing civil liberties more generally. One need not think that autistic people are incompetent or incapable of standing trial for their crimes to object to the way in which this particular case is being handled. Dwelling on the autism issue only obscures the wider injustices, in addition to potentially having some very disturbing consequences for autistic people.**

*Some might say that a non-autistic person wouldn't do what McKinnon did, but I'm not entirely sure I agree. There is no one characteristic of autism that no non-autistic people share. The diagnosis is typically made because of a pattern of traits. In any case, whether a non-autistic person would do this isn't that relevant to my argument that we should focus on motives, not neurology.

**I have to say that I sort of understand why McKinnon's family is pursuing this tactic. If someone I loved were facing this situation, I might do whatever I could to save them from it. No doubt the McKinnons have legal counsel telling them that pursuing the Asperger's angle is a good idea. The rest of us--including those autistic groups which are standing up for McKinnon--don't really have that excuse, however.

Storytime With FAAAS

2009-06-30T18:02:00.000-07:00

In reading various discussions of FAAAS on the Internet, I have seen several people try to defend the organization. The following post is an attempt to refute these FAAAS apologists, using the very simple technique of quoting things which FAAAS people have said. I am not yet inspired to write my own poetry, not feeling very inclined towards writing poetry, even bad poetry. So instead I'll give my readers a few snippets of FAAAS' "brilliance." These quotes are from the book Asperger's and Adults...Is Anyone Listening?, edited by Karen Rodman and with an introduction from none other than Tony Attwood. (Note: The link to the Amazon.com page for this book is not an endorsement). I am fortunate enough to have access to an excellent university library system, which allows me electronic access to many titles published by Jessica Kingsley. Fortunately, this means I can read through Rodman's book without having to pay for it myself.

So, here are a few choice quotes from Asperger's and Adults. I think these words do a nice job refuting FAAAS' own recent assertion that it is not a hate group. Please note that these are just a small sample of possible excerpts. Were I to record every anti-autistic statement made in this work, I would end up having to copy practically the entire text. I hope this entry will be useful to those trying to explain to skeptics why FAAAS is, in fact, a hate group.

His or her inability to respond to you emotionally robs you of your self-esteem, friends, family, confidence in yourself and your confidence in others. It steals a “normal life” away from “normal” people. Those born with the affliction of Asperger’s Syndrome survive at the emotional and psychological expense of others. Of course, this is not done consciously on their part! (42)

Short version: Autistic people are (unintentional) parasites.

Like an object,
I was chosen by you.
Like a leech you clung,
I hadn’t a clue. (47)

Again with the parasites.

Oh, unless [the author's son] had a fever of 105. Then he was so normal it was scary. He was concerned about others, empathetic, kind, understanding, gentle. Very strange – one doctor suggested that since neurotransmitters react in an enzyme environment, and since enzymes are heat sensitive, this phenomenon should be researched. My sister suggested we just put C’s head in a microwave and see what happens! We have learned to laugh about a lot of things. (53)

How hilarious. Tell me again who's supposed to be abusive here.

And he revealed to me for the first time that he was a cross-dresser. In trying to work out our relationship in view of this, his inability to understand someone else’s feelings is shown most dramatically. He told me that he can’t understand why this would be such a big deal for me. (68)

Being anti-autistic with a side of homophobia and gender policing.

Our lives are incompatible
Trying to find some way to manage our relationship has made me ill
I do not have the energy or stamina to continue trying
Neither do I have any desire to try
You have beaten me
Congratulations (83)

And FAAAS tries to claim that they don't ascribe malintentions to the autistic partner?

I just want to sit down and cry.
O I know I should stop being so negative.
Besides, I should be used to it, I’m a universal donor.
Everyone wants my blood. (155)
(From piece entitled "O Negative.)

And again with the blood-sucking metaphors. Asperger's/Autism: It's like vampirism, in a way.

I could go on with more excerpts from this whiny, self-pitying book, but I won't. I do find it interesting, however, that from my observations, so many of the contributors to this collection have partners who are not formally diagnosed with an autism spectrum condition. Now, I happen to believe that self-identification is valid, but there seems to me a double-standard at work. How much credibility would a collection of writings by self-diagnosed autistic people be given?

Like I said earlier, I'm not up to writing poetry. But--after subjecting my readers to so much crappy poetry--I'll provide a bit of poetry that's both good and aspie-esque:

Such was that happy garden-state,
While man there walked without a mate :
After a place so pure and sweet,
What other help could yet be meet!
But 'twas beyond a mortal's share
To wander solitary there :
Two paradises 'twere in one
To live in Paradise alone.
--Andrew Marvell, "The Garden"

There, that should help cleanse all of our palletes after reading some of the worst poetry I've ever had the misfortune to read. And somehow I think that many of the partners and children of the FAAAS writers can relate to this state of mind.

Selling Science Without Sex

2009-06-21T10:40:00.001-07:00

Several Hub bloggers have blogged about the new anti-Jenny McCarthy website, Rethinking Autism. While anyone who reads this blog knows how I feel about Jenny, and I do appreciate the site's pro-neurodiversity message, I cannot support its methods of advertising. I understand that the site's use of a frankly gorgeous young woman to transmit pro-neurodiversity messages is a parody of Jenny's use of her sex appeal and celebrity status. But at the same time, I don't think neurodiversity activists should be engaging in a mode of activism that turns women into sex objects, even if this is done satirically--which I am not sure that the website successfully pulls off, in any case. I notice that none of the site's videos feature a conventionally attractive man selling sex. These videos are problematic to me as a feminist, no matter how pro-neurodiversity. When we argue for the inherent equality of autistic people, we shouldn't be objectifying women and venerating a particular kind of appearance (read white and thin) as the epitome of female attractiveness.

Besides, as the videos point out, we have science on our side. No, it's not as "sexy," but that's okay. Leave the sleazy appeals to the Jennys of this world. Let's make our arguments as reasonable people who respect the equality of all people. And, for goodness' sake, how about more videos which position autistic people as true authorities? "Leanne" from the videos may well be autistic, but in the videos her appeal rests upon her sex appeal, not empowerment as a self-advocate.

EDITED TO ADD: In the comments, hollywoodjaded brings up another important objection to these ads, namely their unquestioning support of behavioral therapy. I would not consider this viewpoint, as expressed in the glib, abbreviated format of these ads, to be pro-neurodiversity or soundly scientific. (I'm not saying that one has to oppose all forms of behaviorism to be pro-neurodiversity, but I don't think that a truly thoughtful neurodiversity advocate can uncritically advocate it, either.)

EDITED AGAIN TO ADD: Another reader has brought another good point to my attention, which is that the videos do mention the importance of "recognizing natural differences" in the context of behavioral therapy. I do applaud that--along with the videos' debunking of other anti-autistic nonsense--but nevertheless wish these publicists had found a more empowering way of imparting their message. Sexy ads are not the proper forum for a nuanced discussion of the ethics of ABA.

AoA Surprise--and a Predictable Response

2009-06-11T14:25:00.000-07:00

Shockingly, Age of Autism blogs a response from Dr. Simon Baron-Cohen. Though I certainly have some quibbles with Baron-Cohen's theories, the content of this letter is quite sound. I particularly appreciate how he pointed to inadequacies in services as the real problem--and not a faux "epidemic." I am certainly surprised that AoA would post such a sensible post, especially given the organization's history of silencing dissent.

The blog's comments, however, remain (unsurprisingly) mind-numbingly assinine. It only took two posts for this particular gem to appear:

Simon Baron-Cohen is no different than a 60s era sheriff in a Mississippi town who logs local lynchings as "suicides". He's every bit as much a killer as the mob with the rope. Does it matter that lynchings were targeted and deliberate and vaccine and toxic injuries are collateral? Dead is dead, maimed is maimed. The cover-up is precisely the same.

Yes, you saw that right. The suggestion that the autism "epidemic"* might be an artefact of broadened diagnostic criteria and greater awareness is now akin to justifying and covering up lynching. And, of course, someone else inevitably compares this position to Holocaust denial. Truly lovely. I wouldn't ordinarily post on blog comments, but I found these particular comments to be especially odious on several levels, and thus worthy of commentary. As Katie Miller recently told the IACC, language matters. And using this kind of language to discuss autism suggests that the existence of autistic people is, on some level, comprable to lynchings and the Holocaust. This gross representation of autistic lives--and the co-option of the historical experiences of marginalized groups--cannot pass without commentary. Dr. Baron-Cohen called attention to the problems of inadequate services and discrimination; AoA readers chose to respond by continuing to wallow in a fabricated sense of victimhood which doesn't actually do a single thing for autistic people.

*As Baron-Cohen points out, "epidemic" would be inappropriate language in reference to autism even if incidence was truly increasing. "Epidemics" are contagious by definition, despite various fear-mongers trying to re-define the word.

Rewriting the Autistic Graduate Narrative

2009-06-09T13:57:00.000-07:00

It's that time of year again--graduation time. I myself am a member of the class of 2009 (for college), as is my younger sister (for high school). Like other recent or soon-to-be graduates, I feel proud and thrilled upon the completion of my degree. Unlike most other graduates, I am autistic--but that doesn't make me entirely unique. I am one of many autistic people to receive degrees this year, and many other autistic people have received degrees in previous years. The fact is, my graduating--or any other autistic person graduating--isn't really news, except maybe in the small announcement my grandparents submitted to their synagogue's bulletin.

But for many people in the media, apparently, autistic graduates are news. During the past several weeks, Google News Alerts has brought many "news stories" about autistic graduates to my attention. Here are a few examples from various local news outlets. All of these stories have common themes--the "difficulties" of autism (sometimes referred to as Asperger's Syndrome), the seeming "impossibility" of autistic people's academic achievements, a celebration of the autistic person who has "overcome the barriers of autism."

Though some of these articles recognize the importance of accommodations, most of them portray autistic graduates as inspiring people who, through sheer determination and willpower, have miraculously "overcome" their disabilities. Presumably, this is the reason why so many news outlets feel compelled to report on these events in the first place--we autistic graduates are just so "inspiring."

Except that autism can actually be a benefit as well as a disability in academic settings, and there have always been autistic graduates. We are a "dog bites man" story. The true "barriers" to our success don't necessarily come from autism, but often from systemic arrangements. Throughout our school careers, we often face overwhelming sensory environments, complicated schedules, confusing instructors who we may not understand, social abuse and ostracization, various school procedures which often seem pointless to us, and outright discrimination from teachers and counselors who know our diagnoses. Amongst a variety of other possible problems which may arise in high school and college.* Put this way, it is rather remarkable that some autistic people manage to succeed academically--but only because of the ablism and social barriers we face. Portraying the issue as one of individuals "overcoming" disability through their apparently unique "determination" is grossly misleading and irresponsible in addition to being inexcusably condescending. Instead of writing trite "feel-good" stories about supposedly "exceptional" autistic graduates, our media ought to seriously investigate why we so often face difficulties in academic settings--and in the workplace. And it's not because we're inherently "defective." Tired, problematic stories about "people with disabilities overcoming barriers" are not truly inspiring--but social justice is.

*On a side note, I find it unfortunate that so many people assume that an autistic student who struggled in high school is doomed in college. Many of us actually find college easier, at least in terms of its academic structure.

Being Against Autism--Charitably, Of Course

2009-06-02T23:04:00.000-07:00

I and other neurodiversity proponents have long known that a lot of "autism advocates," including those from Autism Speaks, are actually against autism--and autistic people, by the transitive property. So it's not altogether shocking to see a new Autism Speaks initiative which calls itself Athletes Against Autism (AAA). The organization claims that its celebrity athlete members are "personally touched by autism." Whatever the heck that actually means, these athletes clearly are not for any autistic people who may be in their lives, and I find that tragic. To clarify: you cannot be against autism without being against the continued existence of autistic people. Let's save the antagonistic language for conditions which do need to be cured and prevented--cancer, HIV/AIDS, diabetes, etc.

The good news is that, as far as I can see, there aren't really that many big names associated with AAA, at least in MLB. (I do not follow other sports and hence cannot comment on that.) The even better news is that one noticeable name is missing--Dan Marino's. While Autism Speaks and the athletes now associated with AAA promote a damaging view of autism perpetuated by (presumably) non-autistic people, at least one athlete who has a family member with autism is willing to listen to actual autistic people. (This is not meant as an endorsement of The Dan Marino Foundation, necessarily, though I do applaud its willingness to listen to self-advocates.)

What the long-term impact of this development remains to be clear, but this new initiative definitely further highlights the problems with Autism Speaks as an organization. It continues to be "against" autism, and thus autistic people. And it continually refuses to make any kind of outreach to autistic adults. Autism Speaks is quite eager to announce its alliance with "celebrity athletes" (including several weak-hitting middle infielders), but it ignores people who are actually autistic. After four years of the organization's existence, there are no excuses.

And in my book, the letters AAA still only signify a kind of battery, the highest level of minor league baseball, and the place you call when you have a flat tire.

Who Benefits from 'Autism Recovery'?

2009-05-11T13:30:00.000-07:00

Sorry for the lack of posting during the past month. I was busy finishing up college. Having thankfully completed, I hope to start blogging more regularly over the summer, starting with this post on alleged "recovery" from autism.

So, the media is reporting that 10% of autistic children can "recover" from it. These are certainly interesting results with numerous implications. On the plus side, this may discredit those charlatans who promote biomedical treatments for "autism recovery." As most of us neurodiversity people have known all along, an autistic children need not be put on a restrictive diet or given potentially dangerous chemicals to show developmental gains. That's the good news.

The bad news is the continued emphasis on "normalizing" autistic children, particularly through behavioral therapy. "Recovery" is deemed in terms of appearing more like everyone else:

Among them was Leo, a boy in Washington, D.C., who once made no eye contact, who echoed words said to him and often spun around in circles — all classic autism symptoms. Now he is an articulate, social third-grader. His mother, Jayne Lytel, says his teachers call Leo a leader.

Read the unstated assumptions in this paragraph: Autistic people can't be articulate, social, or leaders.

Doubters say "either they really weren't autistic to begin with ... or they're still socially odd and obsessive, but they don't exactly meet criteria" for autism, she said.
Fein said the children in her study "really were" autistic and now they're "really not."

I tend to agree with the 'doubters,' though obviously I'm in no position to evaluate other people's diagnoses or un-diagnoses. I do notice, however, that most of the "recovered" children are still fairly young. How are we to know whether they will function "normally" (however you define that) socially or in other ways throughout their entire adolescence, never mind their entire lives? I don't think we can know that, and I am skeptical that re-diagnosing kids as "not at all autistic anymore" is at all beneficial to them. Some of these kids may very well grow up and experience autism-related disabilities. Only instead of receiving appropriate support, and having the comfort of knowing that it's okay for them to be different, they'll be operating under the assumption that they're "entirely normal" now. "Recovered" kids may well be expected to be more normal than normal kids, on the basis of continually "proving" their "recovery" to people who want to believe in such things.

Which brings me to the title question: who benefits from "autism recovery"? The answer does not seem to include "recovered" autistic kids. In fact, the only benefit which I can perceive is that being labeled as "recovered" will mean that the child is no longer subjected to the stigmatization and discrimination that comes along with an autism diagnosis. Other than that, I see few benefits to being proclaimed a "recovered" autistic. My partner was diagnosed with autism as a young child, though his family and doctors more or less abandoned the label a few years later. He was diagnosed with Asperger's Syndrome at the age of 20. I guess he wasn't exactly "recovered" after all. A lot of sufferinig might have been avoided had not the people around him fallen into the "autism recovery" paradigm. (Granted, this was in the '80s. Our newer understanding of autism ought to prevent us from making the same kinds of mistakes and stereotypical assumptions about autistic people.) In short, practicioners need to remember that autism is generally a lifelong condition which may present different disabilities at various points of the life cycle. Claiming a full "recovery" from autism isn't actually that useful to autistic people.

The main beneficiaries of "autism recovery," as far as I can tell is the parents and professionals who wish to exploit supposedly "recovered" children. Jenny McCarthy may be a particularly egregious example of this, but she's not alone. Even non-celebrity parents can get a book deal and/or speaking engagements by flaunting "recovery." And, of course, both charlatans and more respectable researchers can benefit from promoting the idea that recovery is possible. Even parents who do not literally capitalize on their child's "recovery" receive benefits from the relief of knowing that their kid is (supposedly) Normal, and therefore less embarrassing.

Are there children who once legitimately met the criteria for an autism spectrum condition who now no longer do under any reasonable definition?* Probably. But we shouldn't see that as the Holy Grail of autism, and we certainly shouldn't be in a rush to pronounce autistic kids "recovered." If a child grows up, is informed of his/her diagnostic history, and then wishes to renounce the label, that's his/her own choice. But pronouncing a child to be completely recovered at the age of "not" is not necessarily in his/her best interest. And publically flounting said child as a miraculous example of "recovery" most certainly is not in his/her best interest. I feel strong sympathy towards Evan McCarthy. He, and other autistic children whose parents flaunt their "recovery" so publically, may well be in for some difficulties later in life. And having families and professionals believe that they are "recovered" could be seriously damaging to them. Autistic people already experience entirely too much pressure to be "normal."

New Theory of Autism?

2009-04-01T14:58:00.001-07:00

If there's anything the world doesn't need, it's probably another grand, unifying "theory" of autism. (I use the word "theory" loosely.) We already have vaccines, too much TV, "extreme male brain," and even WiFi. Now the folks at the Albert Einstein School of Medicine at Yeshiva University have brought us another theory.

I don't know enough about the science to make an informed comment about how accurate the research is. I do note that the study, like far too many autism studies, assumes a universal norm--be it for behavior or brain regulation--when in fact there tends to be a great deal of variability among humans. I appreciate the fact that the researchers warn against inducing fevers as autism "treatment," but that isn't going to stop charlatans of autism research and "treatment" from using this study as a justification.

"On a positive note, we are talking about a brain region that is not irrevocably altered. It gives us hope that, with novel therapies, we will eventually be able to help people with autism," says theory co-author Mark F. Mehler, M.D., chairman of neurology and director of the Institute for Brain Disorders and Neural Regeneration at Einstein.

I don't understand why Dr. Mehler is saying that autism doesn't involve "a brain region that is not irrevocably altered" when it seems pretty clear to me that the brain chemistry is, in fact, not alterable with current technology even if you accept this theory. It's nice to know that Dr. Mehler thinks he can eventually "help" us by altering our brain chemistries and genes involuntarily, though. Mehler has, apparently, not considered the fact that methodologies other than tinkering with people's bodies could help improve the quality of life for autistic people.

In the meantime, this study (allegedly) indicates that prenatal stress during the later months of pregnancy is a cause of autism. That may well be true, but what does that mean? Is fear-mongering pregnant women into "resting" and not engaging in any potentially stressful activities during the later months of pregnancy going to become a new "autism prevention" tactic? It wouldn't surprise me, especially as it fits well with an outlook of the world which demonizes working mothers.

"The message here is one of hope but also one of caution," Dr. Mehler adds. "You can't take a complex neuropsychiatric disease that has escaped our understanding for 50 years and in one fell swoop have a therapy that is going to reverse it — that's folly. On the other hand, we now have clues to the neurobiology, the genetics, and the epigenetics of autism. To move forward, we need to invest more money in basic science to look at the genome and the epigenome in a more focused way."

Well, at least Mehler understands that the biology of autism is complicated, though he seems rather confused about what autism actually is. (not a "neuropsychiatric disease.") The idea that "autism is reversible" has certainly already been sensationalized by Science Daily, and no doubt will be by other publications. But I think it's pretty clear that we don't yet know how to re-program people's genes and/or brains, and won't for a while yet. I, unlike Mehler, think it's folly to attempt such a thing. My ethical concerns with such attempts are partially assuaged only by my belief that they are inevitably doomed.

It's (Almost) Autism Awareness Month...

2009-03-29T16:43:00.000-07:00

...and it looks to be full of irritations. I went to Barnes & Noble today--one of my favorite places--and saw that the store had already put up its own "Autism Awareness" display. Among the books featured was none other than Jenny McCarthy's latest tripe, "Healing and Preventing Autism: A Complete Guide," coauthored (or, more accurately, authored) by "Dr." Kartzinel. Unsurprisingly, it looks awful based on the inside jacket, in which Jenny and the "doctor" seem to be telling parents that their child might be autistic if they have medical problems like ear infections and gastrointestinal problems. And it's all the vaccines' fault, of course. Because apparently in Jenny's world every child was born "perfect" and "normal" before the evil vaccines.

Before she started being a shill for the vaccine conspiracy theorists, I never even heard of Jenny McCarthy--oh, those were the days--and I still don't understand why, exactly, she's famous. A cynical person--like me, for instance--might say that the whole thing seems like a good way to receive money and attention. Jenny has now "authored" six books about parenting, three of them autism-related. Because if I were a parent and needed advice, Jenny would be the first person I'd go to. The mind truly boggles.

Unfortunately, it looks like we're in for another April of autism hysteria and demonization of autistic people, at the hands of Jenny and other irritating people. I have huge problems with the whole "awareness" concept. I guess "awareness" might make sense for some actual diseases, like AIDS and breast cancer, in that "awareness months" might make people at risk for these diseases get tested. (I'm not entirely sure that this is true, but it might be.) But autism "awareness"? What, exactly, are we supposed to be made "aware" of? The fact that autism exists? Thanks to the Autism Speaks media machine, I think it's safe to say that everyone in America who hasn't been living in a cave for the past five years knows that. But are people going to be made more aware of autistic people's value as human beings, and the systematic discrimination which we experience? Somehow I doubt it, but I'll be on the lookout.

In the meantime, I'll link to my favorite Autism Awareness Month piece, an article from Dr. Morton Ann Gernsbacher. And I'll add a separate tag for Jenny, because she's really "earned" the honor.

A Few Cool News Items Which Caught My Attention

2009-03-28T09:49:00.000-07:00

Thai Fireman Dresses up as Spiderman to Rescue Autistic Boy
Kudos to this fireman for being wise enough to relate to this boy on his own terms, rather than "normal" ones.

First Woman Pro Baseball Player Makes Her Debut in Japan
Very, very cool. No, she's probably not going to make Major League Baseball or the higher levels of Japanese pro baseball, but you could say the same of most low-level prospects. Good for her, and I hope she doesn't listen to the curmudgeons who are saying she's only on the team because she's a woman. Oh, and ESPN? Please don't refer to a pro athlete as a "Japanese schoolgirl."

AoA, Footnotes, Meltdowns, and More

2009-03-18T13:56:00.001-07:00

I should preface this post by saying that I should probably be working on my thesis right now. Obviously, I'm not. Is this the result of my autistic/ADD "executive functioning" difficulties? Or simply "regular" procrastination? I don't know. But at any rate, Jake Crosby's latest at Age of Autism has struck a chord with me, and I strongly anticipate that my reply will be censored by the Stalinist moderators. So, I thought I'd reply here.

Mr. Crosby has written about his frustration with writing academic papers and using citations. He finds the multi-tasking aspect difficult:

I’ve been docked a lot of credit for not making clear arguments in past assignments, so as a result I always make sure I’m making an argument in an essay when required. That’s not as hard to do, it doesn’t involve diverting attention away from the paper intermittently to plug in some quotes or reference the Chicago Manual of Style to make proper footnotes or a works consulted -- ending old initiatives and starting new ones. Such a mental process is confusing for me. I would wonder: “Do I add citations while writing the paper, greatly slowing down my progress, or add them in later, having to retrace to where I left off?” Neither solution seemed desirable, so as a result I typically never added in more than two or three footnotes a paper. This challenge coupled by a lack of decisiveness impeded my functioning! I had known how severely autistic children suffer from “sensory overloads,” and as a result cannot function sufficiently. Meanwhile, I am continuously having the same kind of problem, albeit to a far lesser degree of severity. So to my neurodiversity detractors: is it any wonder why I feel the way I do?

First, a few practical suggestions for Mr. Crosby and anyone else who is struggling with footnotes:

1. Get Zotero, a Firefox application which helps you with citations and bibliographies. It can be frustrating to use at first, but overall a big time-saver. I know other people use RefWorks and EndNote, which basically do the same thing. Citation can still be a pain, but the right technological tools can help.

2. If citations screw up your flow when writing, simply make a note of what needs to be cited, put it in bold font so you don't miss it, and add it in when you're ready. That can be more time-consuming than you might think, even with Zotero, so leave time for yourself to do this so you don't feel rushed. (Says the person who is supposed to be working on her thesis...including tons of footnotes...) Maybe this solution doesn't seem entirely "desirable," but you (Mr. Crosby) don't seem thrilled with getting poor grades either. Citations are necessary in certain situations, however unpleasant they may be.

It's quite understandable that Mr. Crosby struggles with this. As a writing tutor I know that a lot of smart students struggle with citations, too--and most of them are NT. I don't want to trivialize autistic people's experiences because we do have difficulties that other people don't have, or that they don't have to the same extent. Nevertheless, it's important to point out that NT people have difficulties, too. They might even be "disabilities" in certain contexts. Life, and college, are not easy for anyone, and I think it's too easy for autistic people to fall into the trap of thinking "If I didn't have autism, then....[my life would be great]" Not so. "Autism" in and of itself is not the sole cause of any problem an autistic person has.

Now I'm going to switch gears from writing tutor mode to neurodiversity advocate mode. I really, really, hate the expectation that autistic self-advocates need to talk about how much we've suffered before we're taking seriously. Nonetheless, I'm afraid I'm going to have to do that, at least a little bit, to get my point across here.

Mr. Crosby, I've experienced overload because of footnotes and other word-processing-related frustrations. I've also experienced overload because of other things, most of which would seem completely unfathomable to "normal" people. And when I say overload, I mean being unable to focus on anything else, having a severe panic attack, and basically being a screaming, sobbing mess until the problem gets resolved or I find some way to calm down. I've experienced meltdowns like this fairly regularly for my entire life. I don't enjoy this any more than you enjoy struggling with school. I think I can understand why someone would just want struggles to go AWAY. We evil neurodiversity types are quite aware of the problems which often come with being an autistic person in an autistic-unfriendly society.

But it is fallacious to equate any problem you might have with AUTISM, which encompasses a huge range of traits and experiences.

Now, the fact is that there is no cure for autism--but there are accommodations and ways to improve your life as an autistic person. What helps me, personally, is a weighted blanket and other sensory accommodations that help me calm down when I'm in the middle of melting down. Not chelation or restrictive diets or behavioral therapy. Because, the fact is, that my brain works differently and to improve my quality of life, I have to find ways to do things which are easier and more calming for ME, as an individual with an atypical brain. This also means that outside people need to be more understanding of the way my brain works. I've been treated quite badly throughout my life because of people who didn't know how to respond to me in a non-antagonistic way, even if their intentions were good.

I accept that no "treatment" is going to make my brain a "normal" one, and I don't want that anyway because I appreciate the enjoyment I get out of my many "abnormal" traits. But the cure/no cure debate is purely theoretical because there is no cure for autism. (Yes, yes, I know the AoA folks feel differently.) Do Mr. Crosby and others support allocating autism research funds to research which is geared towards improving quality of life, rather than imposing normalcy or searching for a magic pill? Does Mr. Crosby support measures that would aid non-autistic people in interacting with autistic people--not just vice-versa? Because to me, it seems like he's just attributing all of his problems to "autism" and searching for a "cure" as elusive as the Fountain of Youth.

In short, Mr. Crosby: Please don't assume ND advocates don't know about unpleasant aspects of being an autistic person. And please, please, please, stop with the magical thinking. You might just help yourself on that one.

[SIDENOTE: I do not mean to trivialize Mr. Crosby's difficulties. I must, however, note that if Mr. Crosby were an ND advocate, his example of footnote overload would be ridiculed by most of the same pro-cure, anti-vaccine people who are now cheering him on. What rank hypocrisy.]

Defying stereotypes...in an unpleasant way (a rant)

2009-03-04T08:55:00.000-08:00

This post is really more of a mini-rant, but I have to say that the more I engage with some auties online about political issues, mostly on Wrong Planet, the more I doubt the stereotype that auties really are more logical thinkers. (Not that I think this stereotype needs to be true for us to justify our existence, of course.) I wish some of us would stop propagating that myth.

I met Neil on Wrong Planet, and I really appreciate the site for what its done in bringing together so many autistic people in addition to introducing me to my soulmate. But the levels of sexism, racism, ablism, and anti-Semitism which go unchecked on that board really makes it a frustrating environment for me. Thank goodness for Lindsey's blog and others which approach neurodiversity from a pro-feminist perspective.

Autistic and In Love

2009-03-01T22:03:00.000-08:00

I enjoyed this feature segment from ABC News, though I don't think it's really news that there are autistic couples out there, Neil and I being one of them. And ABC, all couples work hard to stay together, not just autistic ones, though I do think autie couples have some unique challenges, and not necessarily the ones represented in "Mozart and the Whale," either.

Unsurprisingly, many of the comments on the story piss me off, but I liked the story itself.

The Problem with Gregory House

2009-02-28T14:56:00.000-08:00

Thank you to everyone (trolls aside) who offered me congratulations on the last post. Now I want to blog about something which has been bugging me for awhile and can finally write about because I'm caught up on House.

[warning: this has spoilers for the series up to the most recent episode]

First I want to say that while this post is about House himself, I also have a disability critique in the works about how patients' disabilities are dealt with on the show. But this post is mostly about House. Also, while I know many people have suggested that House himself is on the autism spectrum, I disagree. He's too talented in reading and dealing with people. The man is a misanthropic jerk, period. Moreover, the show's continued existence relies on his massive jerkitude. Plus, I want to talk about House's clearly marked mobility impairment in this particular post.

Way back in season one, we found out why House walks with a cane. As it turns out, House had an aneurysm in his leg which resulted in his thigh muscle pretty much dying. Though Cuddy recommends removing the muscle tissue and possibly the entire leg, House refuses. He is willing to risk his life to save his leg. So House is obviously being ableist by thinking that dead is preferable to life with one leg and a prosthetic leg. He is also willing to suffer a great deal of agony, potentially, to save the leg. House is then induced into a coma to avoid the pain. While he is in the coma, Stacy (his girlfriend) approves a "middle-ground" surgery. House will keep the leg, but a large portion of the muscle will be surgically removed. When House wakes up and finds out about this, he gets mad at Stacy for having the audacity to save his life. In the years since the surgery, House continues to have leg pain, which he deals with by becoming addicted to Vicodin rather than doing the sensible thing, which would be to amputate the leg and become one of many amputees who are active and empowered.

Is House an ableist show at this point? Well, House himself clearly has a lot of internalized ableism and ableist ideas--but then, we're not supposed to want to be like House. Though House attributes his misery and misanthropy in part to his leg, the backstory episode showed us that he was just as much of an ass before becoming disabled.

But as I watched more House, the ableism became more and more apparent to me. House is shot at the end of season two, and after a series of trippy, drug-induced visions, House requests to be given an experimental treatment which would help ease his pain. (Remember that House would be in less pain if he had gone through with the amputation, or even if he had used Vicodin with any degree of responsibility.) The treatment works: he's not in pain. But then, the Magical TV Fairies of Retcon step in. Not only is House pain-free--he can run eight miles in no time! Apparently, the experimental drug somehow allowed his leg muscle to re-grow. I'm not Jenny McCarthy, and won't claim any medical expertise from Google. But the idea of a removed leg muscle allowing someone to run after removing the pain is...wrong. Really, really wrong.

Neverthless, the plot contrivances allow House a magical month in which House suddenly becomes Mr. Triathalon. Inevitably, of course, the pain returns and House picks up his cane again, Music of Tragedy playing in the background. At other points in this season, House spends his time at parks watching other people run and moping. Sure, he sabotages his own chance at happiness time and time again. But we're still supposed to feel sorry for him because he has to use a cane. The horror!

In the most recent episode, House gets yet another magical reprieve, this time in the form of methadone. A danger to himself? Not a problem for House. The only problem is that he treats patients and other people nicely, for once, leading him to completely screw up the case. He decides he must return to his oh-so-horrible life of a cane and Vicodin. Apparently we're supposed to believe that House's misanthropic personality completely dissipates once the pain is gone and once he can walk without a cane.

This summary of the series thus far does, I hope, illuminate the ways in which House's character is built around ableism. I'd quite happily enjoy a misanthropic progagonist--in fact, I still do enjoy the show. But when the show indicates that disability is the primary source of his misery, there is a problem. Newsflash: Most people with acquired physical disabilities don't spend half their time moaning about their own misfortune. While I cannot speak from personal experience, my research on disability rights has showed me that people who acquire physical disabilities that many consider "horrible" go on to have lives which are just fine. They often experience problems due to discrimination and poor accomodations, of course, plus the problems which all of us may experience. But the notion that acquiring a physical disability is a Horrible Thing which will Ruin Your Life is a pernicious stereotype which needs to be contested. House, despite the show's numerous virtues, perpetuates this stereotype.

Good News

2009-02-27T08:14:00.000-08:00

I will most likely be going to graduate school next year. I guess that makes me one of those annoying, overachieving neurodiversity advocates. ;)

Children Are Not Political Props

2009-02-13T22:32:00.001-08:00

So, I was looking for things to keep me occupied on a Friday night--and to stop me from continuing graduate school admissions anxiety--and happened across some YouTube videos from various individuals claiming that their child had been "damaged" by vaccines. There seem to be several common elements in these videos:

1. A montage of family photos. Apparently, this is meant to show how a "normal" child became autistic. This "evidence" is rather flawed. Roland Barthes, one of the foremost theorists on photography, argues that photographs are emotionally significant to us because each photograph marks a kind of "death." The camera captures a moment which will never happen again. Only through our memories and own personal connections can we re-interpret the photographs in our family albums. Barthes would most likely scoff at this kind of presentation. Moreover, I didn't even really see much unusual in the pictures--just photos of the same kid at different times. Truly, such photo montages are Rorsach ink blots. If one is inclined to believe that evil vaccines cause autism, that's what you'll see.

2. Some such videos include family video tape, and many of the same problems with photographs persist, especially when the parent videomakers try to interpret the autistic child's social responses. Can a nine month old baby truly be compared to a two and a half year old, when the expectations are so different? And again, I didn't even necessarily see many differences. One video I saw showed a girl (supposedly "pre-autism") not speaking when encouraged to repeat words by her parents. The "post-autism" video of the same girl showed her...not speaking when encouraged to. This is supposed to be an argument?

3. Videos almost invariably had some kind of sappy music in the background, which often grew darker and more sinister when the "post-vaccine" segment of the video began.

4. One particularly appalling trend was for some (not all) of the makers of these videos to insert written dialogue written (supposedly) from the autistic child's perspective. "I am vaccine damaged." "I was born perfect and was damaged by vaccines. Help me re-gain what I lost." That's the general idea of many of these narratives, and they're pretty much beyond the pale.

This shameless, ableist exploitation of autistic children appears to be sadly common among the anti-vax movement; just see pictures from the Green Our Vaccines rally. I doubt that most anti-vaxers can ever be convinced that vaccines don't cause autism, no matter how many reputable studies say so. But I just wish that this crowd would stop being so blatantly disrepectful of their own children. I wonder if they even stop to consider how their children might feel, were they to see such videos and posters at a later date. Mostly I think the vaccine issue distracts from autistic advocacy issues, but seeing some of these videos reminds me just how appalling so much of the anti-vax movement is.

Vaccine Fear-Mongering Is Not Disability Activism

2009-01-23T14:33:00.000-08:00

Thank you to the lovely Miss Crip Chick for alerting me to this story.

A media network which claims to be "for people with disabilities run by people with disabilities" has decided to take on the autism/vaccine issue in a podcast, and it isn't pretty. It can be found here and here. How bad is it? Well the podcast:

-Says that "vaccines have destroyed a generation"
-Cites Dan Olmsted and Jenny McCarthy as authorities, including the whole "Amish don't vaccinate and they don't have autism!" mythology
-Advocates "non-invasive" forms of chelation
-Fear-mongers about the "autism epidemic"
-Says that parents wouldn't want an autistic child because we adversely affect their "mental health." Also, we're very "unpredictable" and get set off by "unpredictable" things, which makes life too difficult for our poor parents. (Actually, it's called sensory overload and difficulties dealing with change.)
-Equates "learning" with autistic kids becoming more "normal."

And that's just in the first ten minutes or so. I didn't have the stomach to listen beyond that. For me, it's really disheartening to see such an ableist podcast from a source that's supposed to be by and for PWD (people with disabilities). I don't want to unload on the guy, but I do think he would do well to learn more about neurodiversity and the perspectives of actual autistic people. I encourage any readers interested to write him or comment.

Ableism in Inauguration Coverage

2009-01-21T15:24:00.000-08:00

Like many others, I was heartened to witness President Obama's inauguration yesterday. I dearly hope that the new administration will bring about needed change in many areas of policy, including disability policy in particularly. Unfortunately, some members of the media used the occasion to promote the same old ableism. As Laura Hershey puts it:

I never thought I’d be sticking up for Dick Cheney. But his appearance at the Inauguration today, riding in a wheelchair pushed by several Marines, has elicited so many nasty, disabiliphobic comments, that I find myself… well, not exactly defending Cheney, but at least defending the dignity of wheelchair use.

There are many negative comments to be said about Cheney, most of them entirely deserving. But using a wheelchair is not a metaphor for something else, and there is nothing inherently undignified about it. Being Dick Cheney is undignified.

Follow up on Baron-Cohen

2009-01-15T12:47:00.001-08:00

Given my recent criticism of Simon Baron-Cohen's comments on prenatal testing, I thought it only fair to link to an article posted yesterday in which he claims that his views were mis-represented. Despite my disagreements with Baron-Cohen on certain issues, I really appreciated these comments and basically agree with the sentiments behind them. Money quote:

People don’t have to earn their right to life by having the skills to make a contribution. They have a right to life. Period.

Amen.

Autistic Kids and Expectations

2009-01-12T14:29:00.001-08:00

I highly recommend Lisa Jo Rudy's recent post, "Do we expect too much from our autistic kids?" The post has several excellent points about the various double-standards which go on with regards to autistic-identified kids as opposed to "normal" kids. Rudy writes:

Most of these kids, ages 6-12, had their noses buried in Gameboys or the equivalent. Few conversed. I said hello to one or two; none made eye contact and only one mumbled a return greeting. There was no possibility of conversation.
These typical kids spend virtually all of their time moving through a series of activities that are wholly planned and managed by adults. Any time that is not managed is spent in front of the TV or the computer, or on a cell phone. In general, these kids take ordinary classes, finish school when the school bell rings, take part in extra curricular activities of their choice, and have few additional demands placed on them - of any sort.
Amazingly, I saw no concern on the part of their parents that these kids were not making eye contact. No one seemed to care that they were not conversing. There was no expectation that they'd make their own beds or meals - or even speak on their own behalf to a clerk or waitress.

It's as though autistic kids are expected to be more "normal" than "normal" kids. True "normalcy" as defined by many behaviorist programs does not really exist.

Autistic kids, it seems, are expected to use every situation as an "educational" experience in Being Social and Being Appropriate--even though social situations cause us sensory overload and we are far more likely to have social anxiety, as a group. And, as Rudy says, most "normal" kids do not spend their lives Being Social and Being Appropriate. It is truly unfortunate that some autistic people face even greater social pressures due to their diagnosis alone, when the right response to autism identification would be to alter social expectations to be more autistic-friendly. Instead, it seems as though autistic kids too often get saddled with unreasonable expectations by anyone's standard. We typically need more alone time and more time to unwind--not less. Scheduling therapy session after therapy session often prohibits that. (Then, of course, there is the tendency to classify everything autistic kids do as somehow "therapeutic," even if it's playing legos.)

Autistic children are kids. Unfortunately, the autism "treatment" rigamarole too often doesn't allow them their childhoods.

More Baron-Cohen Shenanigans

2009-01-07T19:31:00.000-08:00

I've critiqued Simon Baron-Cohen in the past, and I think it's time for another such post. Barron-Cohen was recently interviewed by BBC on the subject of prenatal testing for autism. Various notes from the article and audio interview:

-Joy Delhanty brought up the issue of genetic testing being used for "individual families," versus the test being "society-wide." I'm skeptical. With so much autism hysteria being whipped up these days, it's easy to see how people with no family history of autism whatsoever may demand this test. I also note that for Delhanty and SBC, mass availability of prenatal testing means society-wide testing. What about families' choice to not test? When women are pressured by their doctors to test, as is the case for Down's Syndrome, that definitely is not free choice.

-Accuracy of testing was not mentioned. This is important, since it's very likely that a prenatal test for autism would have a high rate of false positives and false negatives. There are, after all, non-genetic causes for some people's autism. (i.e. prenatal rubella). What might happen if an autistic child is born to parents who thought they had "screened out" for that? This may be especially relevent to families who have one or more autistic children already and use the test. I realize that it is a bit presumptous for me to comment on this, as a non-parent. However, the fact remains that families who specifically want a non-autistic child may very well end up with an autistic one, especially if it runs in the family, even with a (fallable) test.

Besides, any non-autistic child may still be(come) disabled either through birth or circumstance. Disability is a natural part of human variability. It's not going away anytime soon just because we have new, shiny technology. It is foolish to believe we can control the outcomes of our progeny, and I worry about an ableist culture which gives the false impression that we can.

-On a completely different topic, I notice that SBC is still clinging to the "nine to one" male/female ratio for Asperger's Syndrome. How does he account for the fact that the ratio is much lower for other diagnostic categories? Moreover, the feminist in me was simply screaming at this whopper:

And why, in over 100 years of the existence of the Fields Medal, maths' Nobel Prize, have none of the winners have ever been a woman?

How very scientific. I'm sure that has nothing whatsoever to do with social conditioning! SBC's "science" is, as I tried to show in my preceding post about him, rather dubious. He has a habit of assuming his conclusions, without utilizing proper scientific caution. As an autistic woman, I'm tired of this "expert" telling me that my mind must "really" be like that of a man. My brain's just as female as my privates, thanks. SBC's refusal to acknowledge autistics who fall outside his own stereotypes--women, talking autistics with learning disabilities, visual problems, dyscalculia, those of us who aren't math people--is grating. The spectrum may be "variable," but SBC represents it as male, math genius "aspies" on the one hand and nonverbal (and therefore unworthy, in SBC's view) autistics on the other.

-Which leads to SBC's problematic assertions about autistic "talents," as though "talents" and "contributions" are somehow the only things which justifies our existence. There are many "normal" people whose contributions to society are questionable at best--Paris Hilton comes to mind--yet their value is not contingent on "contributions." (Of course, the idea of "contributions" itself is highly subjective.) Mr. Barron-Cohen, many of us aren't particularly good at math or computer programming. Many of us may even seem to have no "talents" from the perspective of your closed mind. We do not need to justify our continued existence in the human gene pool. It's great that you're raising awareness of the ethical issues involved in genetic testing for autism. But I'm not sure I want this kind of "advocacy."

Resist Dangerous Reporting

2008-12-11T18:21:00.000-08:00

I haven't posted on Jacob Grabe yet, in part because I've been too sad and enraged. But I've been corresponding a bit with Nancy Lofholm, author of "Autism's Terrible Toll: Parents Risk Hitting a Breaking Point." And I want to encourage everyone reading this to write Ms. Lofholm at nlofholm@denverpost.com. Jacob deserves better than to have articles reporting his murder discuss him in this appalling manner. Jacob deserves to be remembered as the wonderful, special person he undoubtedly was. This article discusses his autistic traits in terms of him creating "difficulties" for his family, rather than appropriately memorializing him.

Autism doesn't murder people. Lack of services or financial difficulties doesn't murder people. Only people murder people, and it is irresponsible for Ms. Lofholm to juxtapose these issues in this article.