Conversations

Reflecting on Mark Stairwalt's post about autism as a family reunion, I have to confess that I can't wholly relate to his well-crafted analogy from my own experience because my family never has held large gatherings. But I had what might be called a mini-reunion when I had lunch with my mom at a nearby restaurant on Thursday, catching up on the latest family gossip about who cheated on whom, and so forth.

We also briefly talked about the proposed changes in the autism diagnostic criteria. I mentioned that I thought we would see more changes in the future as researchers identify biomarkers, such as in this study showing a significant delay in auditory processing.

"That's interesting," said my mom, lowering her voice almost to a whisper as she confided, "I never thought of myself as autistic, but I do seem to have a delay in hearing and understanding speech."

I replied that it was only to be expected that family members would have somewhat similar traits, and then the conversation moved on to a more general discussion of genetics.

After reading the New York Times article by Roy Richard Grinker on the diagnostic changes, I've been picturing similar conversations taking place in many families. I'm very pleased to see how far Grinker's views have evolved in just the three years since the release of his book Unstrange Minds, which I reviewed on this blog. I noted in my review that although Grinker, a cultural anthropologist, is very well aware of the socially constructed nature of autism, he nevertheless made a number of unfounded assumptions about his daughter based entirely on the prevailing stereotypes in Western culture. Now, just a few years later, those assumptions—such as that his daughter would never leave home or marry—are nowhere to be seen, replaced by this enlightened observation: "Narrow diagnostic categories do not help us understand the way a person will develop over time."

Of course, as with all improvements in society's perception of a minority group, some of its more privileged members have made clear that they would rather keep the stereotypes and prejudice because they can't deal with the prospect of losing what they perceive as their elite status within the group. In Bev's post Angry Aspies, Please Go Away, she calls out two of the usual suspects by name, including (no surprise there) Michael John Carley, who is up to his usual divisive tricks. Clay's blog entry on the topic mentions another culprit. This was only to be expected; and as Clay accurately states, the autistic community needs to have this conversation. Still, it's odious when people make clear that their idea of dealing with stigma is to deflect it onto somebody else instead of working to end it altogether; and I sincerely hope that those who are displaying such attitudes will either grow up or, as Bev says, just go away.


Edit: More posts written from an anti-elitist perspective can be found at LB/RB, Ballastexistenz, Reports from a Resident Alien, Cat in a Dog's World, Journeys with Autism, Uncle Sam's Cabin, The Standard Review, Life with Joey, I'm Somewhere Else, Susan Senator's Blog, Autism Street, Heatherbabes, Homo Autistic, Astrid's Journal, A Time Will Come... and AspieWeb.

Empathy and Autism/Asperger Research

As part of the ongoing effort to debunk the damaging myth that autistics lack empathy, I'm posting a citation to a research study that addressed the issue: Rogers K, Dziobek I, Hassenstab J, Wolf OT, Convit A. Who cares? Revisiting empathy in Asperger syndrome. J Autism Dev Disord. 2007 Apr; 37(4):709-15.

This is not a new study, as can be seen from the date of the citation, but I don't recall having read any articles on the neurodiversity blogs discussing it. (If anyone wrote a blog entry that I overlooked, feel free to post a link to it in my comments.) The abstract describes the study's findings as follows:


Abstract A deficit in empathy has consistently been cited as a central characteristic of Asperger syndrome (AS), but previous research on adults has predominantly focused on cognitive empathy, effectively ignoring the role of affective empathy. We administered the Interpersonal Reactivity Index (IRI), a multi-dimensional measure of empathy, and the Strange Stories test to 21 adults with AS and 21 matched controls. Our data show that while the AS group scored lower on the measures of cognitive empathy and theory of mind, they were no different from controls on one affective empathy scale of the IRI (empathic concern), and scored higher than controls on the other (personal distress). Therefore, we propose that the issue of empathy in AS should be revisited.


The authors explain that "cognitive empathy" refers to the process of understanding another person's perspective, while "affective empathy" is an observer's emotional response to the affective state of others.

In other words, the autistic participants in the study displayed less understanding of others' perspectives than the control group; they showed about the same amount of sympathy and compassion toward others; and they experienced higher levels of personal distress when observing others in distressing situations.

As I have mentioned in previous posts on this blog, tests measuring cognitive empathy and theory of mind are both culturally and linguistically dependent. That is to say, in order to understand others' perspectives accurately, it is first necessary to share common cultural points of reference and to have a sufficiently similar understanding of the words used. The more that a minority community diverges from the majority in its culture and its use of language, the lower its members will score on such tests.

I rather suspect that if anyone were to conduct a research study measuring the ability to understand perspectives that are commonly found in the autistic community, the autistic participants in the study would show more understanding than the non-autistic participants.

Sausages and Legislation

…and the diagnostic categories in the Diagnostic and Statistical Manual of Mental Disorders (DSM) all have one thing in common: You will be seriously disgusted if you look too closely at how any of them are made.

In a Los Angeles Times article, Christopher Lane, a Northwestern University professor, describes an ongoing controversy among psychiatrists as to whether the next revision of the DSM should be open for public discussion or whether it should be a secretive, closed-door process. Lane writes:


Hanging in the balance is whether, four years from now, a set of questionable behaviors with names such as "Apathy Disorder," "Parental Alienation Syndrome," "Premenstrual Dysphoric Disorder," "Compulsive Buying Disorder," "Internet Addiction" and "Relational Disorder" will be considered full-fledged psychiatric illnesses.

This may sound like an arcane, insignificant spat about nomenclature. But the manual is in fact terribly important, and the debates taking place have far-reaching consequences...

...Because large numbers of countries, including the United States, treat the DSM as gospel, it's no exaggeration to say that minor changes and additions have powerful ripple effects on mental health diagnoses around the world.

Behind the dispute about transparency is the question of whether the vague, open-ended terms being discussed even come close to describing real psychiatric disorders.


Lane writes that he is concerned about the lack of solid science, the lack of proper oversight, and the need for a vigorous debate about the validity of any proposed disorders. He describes, in scary detail, the chaotic and scientifically unsupported discussion that went into the creation of new diagnostic labels in previous editions.

This is how I see it: At present, we live in a society where large numbers of our citizens, without any say in the matter, have been assigned mental disorder classifications on the basis of scientifically questionable and often biased research studies. We face widespread prejudice and discrimination as a result of these arbitrary classifications and the resulting stereotypes. Our psychiatric emperors and their drug-company courtiers wield vast power over our lives, while their scientific nakedness usually goes unmentioned. It's time for concerned citizens to put an end to the ugly and morally indefensible caste system that they have created in secret.

Maxine Aston's Cassandra Disorder Scam

Have you ever thought about how much fun it would be to invent a bogus disorder and to rake in the money from persuading gullible people that they were in dire need of your expertise and therapy? No, me neither. Most of us are ethical enough so that we would never consider such a thing. But Maxine Aston, notorious inventor of "Cassandra Affective Deprivation Disorder," evidently has no such qualms.

She was working as a marriage and relationship counselor in the late 1990s when she became aware of the new autism spectrum diagnostic categories and started thinking about how she could exploit that opportunity. There was just one little obstacle in the way of her scheming, which was her lack of autism-related experience. So she cooked up a clever strategy: Provide services to couples in which one partner had an Asperger diagnosis, and then leverage that experience into book contracts and a skillfully crafted public image as an Asperger expert.

Unfortunately, she didn't stop there. She also identified another potentially lucrative market: Women who recently had divorced or were divorcing Aspie husbands, and who would lap up a sympathetic counselor's assurances that they were not to blame for the divorce because autistic men were neurologically defective and unfit for marriage. To cover this blatantly unethical prejudice with a veneer of respectability, Aston proceeded to create "Cassandra Affective Deprivation Disorder," which she defined as a depressive condition caused by being in a relationship with an autistic person.

This so-called "disorder" has no medical or scientific legitimacy whatsoever. No professional association has recognized it, and there are no peer-reviewed studies of it. Aston lifted the "symptoms" straight out of the diagnostic criteria for Seasonal Affective Disorder. Although she maintains what she calls a research page on her website (maxineaston.co.uk/research), it contains only simple questionnaires that show no indication of compliance with institutional review procedures. Aston clearly lacks experience conducting formal research studies in an academic setting and is grossly unqualified to hold herself out as a psychological scientist.

Her shameless peddling of pseudoscientific rubbish and fleecing of emotionally vulnerable divorcees by purporting to diagnose them with a nonexistent disorder would be bad enough in itself, but that's not all. Aston has descended even farther into the depths of the ethical abyss through her long-term association with the Massachusetts hate group FAAAS, which repeatedly has urged social workers and family court judges to discriminate against autistic parents in child custody proceedings. Aston had full knowledge of this despicable agenda from the start, and she proudly touts her association with FAAAS on her website.

Although she asserts that as a member of the British Association of Counselling and Psychotherapy, she abides by its code of ethics and professional conduct, a quick look at BACP's ethical code suggests otherwise. Knowingly inciting disability prejudice and discrimination clearly violates BACP's prohibition against bias:


"Practitioners should not allow their professional relationships with clients to be prejudiced by any personal views they may hold about lifestyle, gender, age, disability, race, sexual orientation, beliefs or culture."


Tossing together a few half-baked questionnaires, which was apparently done with complete disregard for the institutional review process and the rights of the study subjects, can hardly be said to meet BACP's requirement of conducting sound research:


"All research should be undertaken with rigorous attentiveness to the quality and integrity both of the research itself and of the dissemination of the results of the research."


And I won't even bother to list all the ethical rules violated by concocting and profiting from a phony disorder, as that might take all day. Frankly, I find it quite astounding that Maxine Aston hasn't yet been brought up on unprofessional conduct charges.

Researchers Discover Happy Autism Parents

Earlier this week, the mainstream media reported on a study that showed higher rates of various neurological conditions, including schizophrenia, in parents of autistic children. The study focused on families in Sweden whose children were born between 1977 and 2003, and the sample included 1,227 autistic children and 30,693 non-autistic children. (Daniels et al., "Parental Psychiatric Disorders Associated with Autism Spectrum Disorders in the Offspring," Pediatrics, May 2008.)

The popular reporting on this study gave the misleading impression that large numbers of parents of autistic children had been diagnosed with some sort of psychiatric disorder. In fact, very few of the parents had any diagnosis at all. Schizophrenia, although it had a statistically significant association, was found in only 0.6% of the mothers and 0.7% of the fathers of autistic children, as compared to 0.2% of the parents in the control group.

There's a confounding historical factor to consider here: Prior to the modern use of DSM and ICD classifications for autism spectrum conditions, many autistic children were misdiagnosed as schizophrenic. In his book Unstrange Minds, Roy Richard Grinker describes the history of autism and child psychiatry, including the confusion between autism and schizophrenia (page 105):


During the 1960s and 1970s the only mention of autism in the American Psychiatric Association guidelines was the adjective "autistic" in the criteria for "Schizophrenia, Childhood Type." In other words, if you were going to use the official categories, a diagnosis of autism was, de facto, a diagnosis of schizophrenia.


Autistic children in Europe also were frequently misdiagnosed as schizophrenic. Because many of the parents in Daniels' study were growing up during this time period, it seems quite probable that some of those who received a schizophrenia diagnosis could in fact have been autistic. In other words, the study merely confirms the obvious: if you are autistic, your children have a higher likelihood of being autistic too. No surprise there.

What may surprise some folks, however, is that the study found very little depression among parents of autistic children. No association was found between depression and being a father of an autistic child. Although mothers of autistic children were more likely to be diagnosed with depression than mothers in the control group, the percentages were still very small (1.8% mothers of autistic children; 0.8% mothers of non-autistic children).

To put it another way: Contrary to the widespread stereotype of the suicidal, emotionally devastated autism parent, these families with autistic children were enjoying their lives just like other families. The fathers were no more likely to be depressed than any other fathers, and more than 98% of the mothers did not suffer from depression. These parents weren't wishing that their child would drown or fantasizing about driving off a bridge with their child. They were going through their everyday lives just like the rest of the world.

Some mainstream publications have been presenting a more reasonable view of the lives of families with autistic children. The Autism Hub's very own Kristina Chew is featured in an article in the May 2008 issue of Working Mother, which interviews mothers of special-needs children and shows a respectful attitude toward people with developmental disabilities. The article quotes a disability consultant, who himself has cerebral palsy, on the importance of parents taking pride in their children's positive attributes and making time to enjoy their lives. Kudos to both Kristina and Working Mother; it's good to see a more realistic and accepting perspective starting to take hold in society.

The Autism Recovery Hoax

I've seen a number of testimonials floating around on the Web from parents who declare that after a few years of X biomedical program or Y behavioral therapy, their child has now "recovered" and has been evaluated by reputable psychologists and found to have "no trace of autism."

Many of these parents appear to be sincere, unlike the hucksters who tout their endorsements. However, their claims reflect a basic misconception of how an autism diagnosis is made. Quite simply put, it is not possible under the DSM-IV criteria to have a "trace" of autism. The diagnosis requires a showing of significant impairment in certain identified social and communicative behaviors. Therefore, if a child or adult has autistic characteristics but does not have (in a clinical psychologist's subjective judgment) any significant problems associated with those characteristics, the psychologist will conclude that he or she is not autistic.

Indeed, because many autistic adults have become familiar enough with society's narrow behavioral expectations to be able to blend in (at least superficially) with the majority population, it is often extremely difficult for a psychologist to diagnose an autistic adult. Some psychologists will not even attempt to diagnose an adult unless he or she comes to the evaluation accompanied by a parent or another older relative who can accurately describe his or her childhood development.

The flaws in this diagnostic approach are pretty obvious. It's basically the equivalent of identifying a young girl as female based on evidence of significant female behaviors such as playing with Barbie dolls, and then declaring her to be miraculously recovered from her gender when she outgrows the Barbies.

Yes, there are many parents of so-called recovered children who have in fact seen significant changes in their children's behavior over a few years. To a large extent, these changes are attributable to the natural process of maturation. Just as girls outgrow playing with Barbies, autistic children outgrow behaviors like jumping on the couch and climbing on the furniture. Children also develop better language skills over time.

Some changes also may be related to psychological factors in the family. That is, if the parents react to the autism diagnosis with shock and despair, the child is likely to become very anxious as a result of observing the parents' distress and probably will have more behavioral issues because of that anxiety. If the parents then become convinced that they have found a wonder cure and that everything will be just fine, the overall level of anxiety in the household will decrease greatly, and the child's behavior will improve just because he or she is no longer feeling as stressed.

On occasion, alternative diets do have beneficial effects. Gluten intolerance and lactose intolerance are both fairly common in the general population. If an autistic child who happens to have one of these conditions is put on the popular GFCF diet, the child's digestion will improve, and he or she probably will behave better as a result of feeling better. This doesn't mean that the child is no longer on the autistic spectrum, however; it simply means that he or she is a healthy and happy autistic child.

A biomed enthusiast or behaviorism supporter may ask, perhaps, whether it really makes any difference if a child is described as "recovered" or as an autistic child who has developed a socially accepted set of behaviors. In either case, they may say, aren't we talking about the same positive outcome? Does it really matter what language is used?

The difference is, of course, that using the word "recovery" implies that autism is a disease. This in turn implies that autistic people are damaged, that the autistic way of being is inherently flawed, that it is not possible to be both healthy and autistic, and that (as Autism Speaks would have it) the entire autistic population ought to be eradicated.

There's also a subtler set of implications. When social conformity is equated with neurological health, the objective of "recovery" then becomes conformity for its own sake; just looking normal (whatever that may mean), rather than developing truly useful life strategies, is the ultimate goal. Instead of valuing diversity and helping every child to find a niche based on individual strengths and interests, we end up crushing an ever-widening array of human differences as our society lurches toward Camazotz. Becoming socially accepted, regardless of what is lost in the process, should not be assumed to be a positive outcome.

And then, of course, there's the implication that the hucksters want to create when they speak of "recovered" children: that autism is a tragic disease, and therefore if you are a loving parent, you'll gladly go into debt to pay for the latest and greatest miracle cure. If they honestly acknowledged the simple fact that autistic children mature over time, they wouldn't be able to stampede so many parents into buying unproven and possibly dangerous products and services.

Parents—don't be fooled by this hoax!

Outcomes

I wasn't surprised when the NYU Child Study Center's online forum on Tuesday turned out to be a heavily moderated propaganda fest that blocked almost all comments from self-advocates and made only the slightest pretense of responding to the concerns of the thousands of people who objected to the Ransom Notes advertisements. Still, there was one exchange that provided some useful insight into the mindset underlying the ads:


Kristina Chew, Ph.D.: It would be good, perhaps, to teach children about conditions like bulimia, depression, autism, in ways that state simply what they are, without overly emphasizing that it is "terrible" to have them. That's not to say that a person with (for instance) depression does not suffer or have difficulties. It's important to emphasize hope and help, rather than fear.

Dr. Harold S. Koplewicz: I agree with you. However, if we don't educate the public about outcomes of untreated psychiatric disorders, they tend to minimize the disorders; "she is just sad, snap out of it, he is a quirky kid, why give him accommodations, she is just a dizzy blonde, not a child with ADD."


This statement by Koplewicz is very similar to the excuse trotted out by Autism Speaks in trying to justify its admitted manipulation of the images shown in the Autism Every Day film to get the maximum negative effect. According to this argument, it's vital to raise awareness by drawing attention to bad outcomes so that parents will be motivated to get prompt treatment for young children and avoid these bad outcomes. People shouldn't be so thin-skinned, they declare, as to complain about a little collateral damage in this noble war to save children from preventable suffering.

Quite apart from the profound moral deficit shown by those who see nothing wrong with intentionally creating stigma and stereotypes to promote an agenda, they don't even have any factual data to support their claim that they are preventing bad outcomes. Where are the long-term studies following large numbers of children as they grow into adulthood and identifying specific factors that contribute to various outcomes? Nonexistent, that's where. In the case of Asperger syndrome, a diagnostic category that came into use less than 15 years ago, there hasn't been enough time to do a meaningful long-term study of outcomes even if someone had bothered to try. Which they haven't.

No professional can truthfully say that a particular medication, therapy, or what-have-you will prevent a negative long-term outcome. The most they can honestly claim is that some people in similar situations have felt that the medication, etc., was helpful. (And we don't even have a culturally unbiased consensus definition of what a successful outcome might be—that's a whole 'nother can of worms.)

There are a few things we do know, though, with regard to outcomes. We know that widespread negative images can damage a child's self-concept. We know that there is such a thing as a self-fulfilling prophecy. We know that when children are placed in segregated school environments and not expected to learn, it's quite likely they won't learn. We know that separate but equal is inherently unequal. We know that when employers think of certain groups of people as a detriment to society, there will inevitably be serious problems with employment discrimination. And we know that human rights must be vigilantly guarded, even in the twenty-first century, as they can all too easily disappear.

All Your Brains Are Belong To Us

Psychiatry and the pharmaceutical industry have taken a lot of criticism in recent years for diagnosing large numbers of people with newly invented disorders and prescribing unnecessary drugs to many folks who, in the not-so-distant past, would not have been regarded as having any sort of illness or disorder. Some argue that it's all a clever conspiracy to line the pockets of a scheming cabal of psychiatrists and drug company executives. (The title of this post, for those who may be wondering about the ungrammatical language, comes from the gloating of an evil character in a poorly translated video game that has become an Internet legend.)

The other side of the argument can be found in an article in last week's New York Times, which defends the psychiatrists and drug companies by pointing out that many people always have used mind-altering substances of one sort or another. Alcohol, cigarettes, and other products were commonly used throughout history to reduce anxiety and other unpleasant conditions. The author also notes that we can't accurately compare the percentage of the population now taking psychiatric drugs to the percentage that had depression and other serious problems in the past, given the fact that today's diagnostic categories lack historical equivalents. Also, very few people choose to take psychiatric drugs for trivial reasons.

All of these points are based on solid historical fact. They're also quite irrelevant, in my view, to what is wrong with psychiatry. It's probably true that many of the people now taking Prozac or Paxil would've medicated themselves in saloons or opium dens a century or two ago; and if psychiatrists were nothing more than legal drug dealers, occupying the same social niche as bartenders, I wouldn't have any objection. But there is a major difference that the article never mentions: Psychiatry, unlike other types of substance use, always involves coercion, whether directly or indirectly.

When the medical profession broadly applies the narrative of disorder and illness to human cognitive diversity, it causes society to view the people so labeled as tragic sufferers, in urgent need of treatment and/or cure. Instead of being advised to make careful decisions and to exercise moderation, as with alcohol and other potentially harmful substances, a psychiatric patient is expected to take whatever medications the doctor prescribes and never to question the doctor's authority. And if a person who has a psychiatric label is reluctant to use drugs, that decision (unlike the choice to abstain from alcohol or street drugs) will get no support from society; rather, he or she is likely to be condemned as foolish, noncompliant, and irresponsible for not obeying the doctor.

And that's only the indirect coercion. Applying medical labels to cognitive differences also results in forcible use of drugs in many cases; after all, our society considers anyone who does not want treatment for an "illness" to be dangerously irrational. Ginger just posted a blog entry describing the ordeal of Nate Tseglin, an autistic teenager in California who was taken from his parents because they were seen as neglectful for not giving him medications to prevent self-injury. Although the parents explained that he had a history of strong negative reactions to psychiatric drugs, the authorities ignored their concerns and placed their son in a group home where he was forcibly drugged, as described in the Orange County Register:


… the parents were cut out of any decision-making regarding their son. They were given only short visits with him. After he ran away from the group home, the government transferred Nate to a mental hospital. The Tseglins say the drugs the hospital gave Nate caused him to have a "grand mal" seizure, and his health has continued to deteriorate while he languishes in a government mental facility. When they visited him over the summer, they found his face swollen. He faded in and out of consciousness and was suffering from convulsions. They believe he has been beaten and are worried about sexual abuse, given that he is housed with the criminally insane.

The Tseglins claim Child Protective Services has told them they have the "wrong set of beliefs" and even threatened to force them to undergo court-ordered psychological evaluation. The agency at one point suspended the parents' visitations as a way "to assist them in coming to grips regarding their son." The Tseglins, as former citizens of the Soviet Union, have good reason to be fearful of the authorities. But they tell me that they experienced nothing of this sort in the former communist nation. If their descriptions are correct, then the Soviets weren't the only ones who know how to create a totalitarian bureaucracy.


Ginger is asking autism bloggers to write about this case in the hope of shaming the authorities into letting Nate go home. We need to be aware, however, that this is by no means an isolated incident. Children in the foster care system are routinely given strong psychiatric medications to keep them docile, and this has been going on for many years. I used to know a woman who was a licensed foster parent. When she got a new kid placed in her home, the first thing she did was throw away the kid's meds. That was her way of fighting back against a broken system that was destroying children's lives.

That was 25 years ago.

We now have a society that spends vast sums waging a largely ineffectual "war on drugs" while, at the same time, enforcing a psychiatric regime that routinely uses powerful drugs for the purpose of "combating" autism and other neurological variations. Millions of American citizens are stigmatized, coerced in various ways, and sometimes locked up because they are using illicit drugs to change the functioning of their brains. Millions more are stigmatized, coerced in other ways, and sometimes locked up because they have not altered their brains enough to meet with society's approval. And the ever-shrinking group of "normal" people in the middle has to live in fear of what might happen if, at some point, they or their family members were to be judged "abnormal."

The fault lines in our cultural landscape run a lot deeper than any recent conspiracy between the psychiatrists and the pharmaceutical companies. We are dealing with unresolved issues of social class and eugenics that go back more than a hundred years. We still have a frighteningly high number of influential people shaping social attitudes (such as a professor who told his students last week that aborting babies with Down syndrome is "the moral thing" to do) who think in terms of controlling and eradicating the undesirables and perfecting the gene pool. In short, we are dealing with a very complex situation, and we oversimplify it at our own peril when we treat it like a video game battle against evil cartoon conspirators.

Update, Feb. 29: For more information about Nate Tseglin visit http://www.getnatehome.com/

Rock the IACC

Yo, I'll tell you what I want,
What I really really want...

— Spice Girls


Last year, when the Interagency Autism Coordinating Committee (IACC) solicited public comments on federally funded autism research, many of us signed a petition created by Kevin Leitch that asked for respectful language to be used in all discussion of autism. That was a good start toward making the American government aware of our concerns, and it led to some improvement of the language and to more representation of the neurodiversity point of view. But as we've seen in the past two weeks with the quick victory against the Ransom Notes advertising campaign, our community has grown much stronger—when we stand together, we have the power not only to accomplish small successes, but to bring about far-reaching change. This year, we should be sending thousands of e-mails to the IACC demanding not only a respectful tone, but actual, substantive reforms in autism research.

The current request for comments, reposted in the Neurodiversity Weblog, was issued by the National Institute of Mental Health (NIMH) and has a response deadline of January 4, 2008. Comments, which have a two-page limit, should be sent to iacc@mail.nih.gov with this identifying code in the subject line: NOT-MH-08-103.

As one might expect of anything from NIMH, the focus is on psychological and mental issues, and this limitation needs to be kept in mind when composing comments. We can't, for instance, get more funding for special education services through this process because that is outside NIMH's jurisdiction. However, we can tell NIMH to put more research money into the areas of cognitive and educational psychology, in order to determine what kinds of school environments and programs are most useful for autistic children.

Here are some examples of studies I'd like to see funded:

Self-image in autistic children: I have in mind something similar to the psychological studies cited at the U.S. Supreme Court in the 1954 case of Brown v. Board of Education to demonstrate the harmful effects of racial segregation. If autistic children are shown videos of autistic and non-autistic people, which will they prefer? If they are asked which of these people are good or bad—and why—what will they say? How will they react when they are asked which of these people are like them?

Stigma and autism-awareness advertising: Get a large random sample of non-autistic people who have no autistic family members. Survey them regarding their exposure to autism-awareness media campaigns, also ask some questions as to how they'd feel about having an autistic neighbor or co-worker or employee, and see what sort of correlations show up.

Role models: Find three schools that have similar autism programs and are comparable in other ways. In one of the schools, have a positive Autism Month event (along the lines of Black History Month) that focuses on the accomplishments of notable autistic scientists, musicians, etc., and that brings in successful autistics from the community to speak to the students. In the second school, put up Autism Awareness Month posters and teach basic information about diagnostic criteria and prevalence. The third school is the control group and gets no special events. How will the autistic kids view themselves afterward? Will there be any significant differences in how the autistic and non-autistic children interact in each of the schools? What about the mental health of the autistic kids—any differences in anxiety, depression, and other such issues among these three groups?

These are just a few ideas off the top of my head; I'm sure y'all can think of many more. What's important is to send as many e-mails as possible from the neurodiversity point of view. Keep in mind that the budget available for autism research is a fixed amount, so every study that is funded in response to our comments reduces the amount of money that might otherwise be spent on eugenics research or on unethical and potentially child-endangering studies of chelation and other quackery. Our kids are not lab rats, and we need to make it crystal clear that we won't stand for any more shoddy science, biased assumptions, and damaging rhetoric.

Let's get our comments written, everyone!

Mission Accomplished?

"First they ignore you, then they laugh at you, then they fight you, then you win." — Gandhi


Although some folks were upset by the insensitive tone of the mass e-mail sent by Dr. Harold Koplewicz to everyone who complained about the Ransom Notes ads, I view it as a positive sign that the NYU Child Study Center took less than a week to advance from the ignoring us stage to the laughing at us stage. (By way of contrast, it took Autism Speaks more than a year to realize that they couldn't just ignore us in the hope that we would all go away.)

In his letter, Dr. Koplewicz has this to say:


"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.


Here's a strategic point to ponder: The fact that Dr. Koplewicz acted so quickly to compose a mass response to our letters is a clear indication that we have deluged him (and other influential people at NYU) with enough e-mail, snail mail, faxes, phone calls, etc., to make him feel very uncomfortable. Otherwise, he probably wouldn't have bothered to answer us at all. That means we're doing a great job, people, and we need to keep the heat on—and, if possible, turn it up a notch or two.

If you have already written a letter of complaint to NYU, send another one to make sure they clearly understand that you have no intention of taking crap like "[t]he strong response to this campaign is evidence that our approach is working" for an answer. It looks like Dr. Koplewicz has the mindset that one can't make an omelet without breaking a few eggs—or, in this case, that one can't effectively advertise mental health services for children unless one first destroys the hopes, dreams, and spirits of said children and induces mass panic and vicious prejudice by means of misleading and sensationalistic ads.

The Autistic Self-Advocacy Network has made contact information available for various people associated with NYU and the Ransom Notes ads. (I suggest copying Dr. Koplewicz on all letters sent to anyone concerning the Ransom Notes ads, so that he can clearly see the extent of the worldwide revulsion these ads have caused.)

Also, tell your relatives and friends about NYU's ads and ask them to send protest letters as well. Write about these disgusting ads on your blog and on whatever forums you visit. If you know anyone in the media, either in the New York area or nationally, ask them to cover the story. Contact disability rights groups and anti-stigma campaigns such as NAMI's Stigma Busters. If you know any NYU alumni, ask them to inform the university that it won't get another dime of donations from them until it pulls the ads and issues a public apology.

We'll just see how long Dr. Koplewicz continues to put up a brave front and pretend that widespread public outrage is "evidence that [his] approach is working."

As Barack Obama mentioned not long ago, in reference to a certain overconfident opponent—some folks have made the mistake of declaring "Mission Accomplished" a little too soon.

Held for Ransom

The Child Study Center at New York University has a new advertising campaign entitled "Ransom Notes," which is, unfortunately, just what it sounds like. "Awareness" posters focusing on various psychological conditions and developmental differences, including autism and Asperger Syndrome, are written in the style of ransom notes from kidnappers. They begin with "We have your son," and go on to describe in absurdly melodramatic terms how he is being destroyed for life, etc. I'm not going to quote this repulsive dreck in any more detail or give it an active link, but this is where you can find it:


aboutourkids.org/about_us/public_awareness


Thanks to hollywoodjaded for bringing this appalling example of hate speech to my attention. I posted the following comments into the contact form on the website to express my disgust, and I urge readers to let them know what you think of it, too.


To the person(s) responsible for creating the grossly offensive "Ransom Notes" advertising campaign: Because it's so obvious that you did not consult with any autistic people or other neurological minority groups before trotting out that odious medieval stolen-child changeling nonsense, I'm going to take this opportunity to educate you on the actual views held by many people in the autistic community today.

Many of us do indeed feel as if we're being held for ransom, but you've got the identity of the perpetrators all wrong. To find a clue, you might want to take a good look in a mirror. We—that is, America's autistic citizens and our families—have had our lives hijacked in recent years by a greedy profiteering agenda that has deliberately and viciously stigmatized autistic people as broken, less than human, our souls stolen from us, and similar bigoted garbage, all for the purpose of making money by selling therapies. As a result, we now face prejudice and discrimination every day, in all aspects of our lives.

We are being held for ransom by psychs who, after inventing the Asperger diagnostic category in the 1990s to drum up new business by pathologizing millions of people who had been considered normal up to that point, now have the hubris to claim that they are the only ones who can save us from the horrors of being ourselves. The list of accomplices in this obscene scheme is long and shameful. It includes quack doctors peddling wonder cures, amoral researchers vying for grant dollars, nonprofit organizations more interested in self-aggrandizement than in actually helping anyone, posturing politicians trolling for votes, advertising agencies that have no qualms about creating the ugliest propaganda if the price is right, media corporations that regularly concoct bogus epidemics and milk them for all they're worth, and more.

On the About Us page on your website, you claim that one of the central goals of your organization is "to eliminate the stigma of being or having a child with a psychiatric disorder." But after seeing Ransom Notes, I just have to wonder if you really think you're going to fool anyone with that claim.

Unfashionable Abilities

Every now and again, someone misrepresents the neurodiversity movement by claiming that its adherents believe autism is not a disability, but a wonderful gift and the next stage in human evolution. Without fail, several pro-neurodiversity bloggers respond that they don't believe any such thing—that yes, autism is a disability, but that it is OK to be disabled, and that neurodiversity is all about making the world a more accepting place for the cognitively disabled.

Speaking only for myself here, neither of the above viewpoints accurately represents the way I see neurodiversity. The question of whether or not autism is a disability is a false dichotomy, as I see it, and the wrong question to ask.

There are two main schools of thought with respect to disability: the medical model, which characterizes disability as consisting of medically defined impairments; and the social model, which looks upon disability as a culturally constructed status resulting from society's failure to provide adequate services and accommodations to enable full participation in society by those who have physical and/or cognitive differences.

Most of the arguments about autism as a disability seem to be rooted in the confusion caused by these conflicting approaches. Behaviorist and biomed supporters chiefly see autism in terms of the medical model, that is, as a defect to be remediated by means of various therapies. When someone disputes the validity of their medical claims, they're likely to interpret that as the equivalent of denying that autism is a disability or that autistic people have medical problems. Neurodiversity supporters, on the other hand, generally embrace the social model of disability and argue that social acceptance of cognitive differences is the most important issue. According to this view, treatment of medical problems, while appropriate to the extent it is based on solid and unbiased scientific research, should never be a substitute for respecting and protecting human rights.

As a consequence of the different ways in which the term "disability" is being understood in the autism community, the discourse often degenerates into straw-man claims that have little to do with reality. This is what I have to say about that: It's time for everyone in the various camps to recognize that these issues are very complex and that unrealistic caricatures of opposing views are not going to help autistic people or their families. I haven't seen any neurodiversity supporters who would deny that some autistic people have medical problems; disputing issues of causation and treatment is another matter altogether and has more to do with scientific accuracy than with political activism. I also don't believe that the majority of behaviorist and/or biomed supporters are ogres who consider the civil rights of autistics to be totally irrelevant.

Regarding the straw-man depiction of neurodiversity as some sort of aspie supremacy cult, I'll note that a few people have indeed argued that autism is the next stage in human evolution; however, my impression is that they're mainly teenagers who complain on forums that they don't get enough respect for their academic talents. As they grow up and develop a more mature perspective, they'll eventually realize that high scores on tests do not equate to overall intellectual superiority and should never be used to pass judgment on anyone's value as a human being. (And maybe they'll learn how evolution actually works, too.)

Although I generally agree with the views expressed by the pro-neurodiversity bloggers, I don't believe that it is appropriate under the social model of disability to make categorical statements such as "autism is a disability." Yes, it's certainly true that some aspects of autism are disabilities under some circumstances; but the same could potentially be said of any other set of human characteristics. To put it another way, today's disability classifications often are based on irrational prejudices and subjective value judgments; they're not just about a lack or impairment of an ability.

When pro-neurodiversity bloggers write that autism is a disability, I think what's meant is that in today's society, autistic people can benefit significantly from services and accommodations that are not commonly available. I don't disagree with that observation, and I believe that accommodations for all sorts of differences should be made available as a matter of course; but, at the same time, I think we need to be very cautious about declaring millions of people to be disabled on the basis of recently created and vaguely defined diagnostic classifications. On that point, here's an excerpt from the anti-psychiatry essay Shrinking to Excess:


The latest edition of DSM lists more than 300 mental syndromes. Only two decades ago, an earlier edition listed a mere 106... the psychiatric establishment is foisting these invented illnesses on us in a bid to lay claim to handsome reimbursements from insurance companies. For psychiatrists to receive payment from health insurance companies, they must find a way to label a patient with a recognized condition--which is why they recognize more, and more, and more conditions. Wait for the next DSM, and there will be at least another 50 conditions added to the existing list. According to Drs. Kutchins and Kirk, "the unlabeled masses are a vast untapped market, the virgin Alaska oilfields of mental disorder."


When we fail to challenge the authority of medical professionals to classify and pathologize traits that once were accepted as natural human differences, we make ourselves complicit in perpetuating a modern-day caste system that ranks people according to their perceived normality. The central underpinning of this oppressive system is the arbitrary division of the human race into "disabled" people and "normal" people, which depends largely on what sort of abilities happen to be fashionable at the moment. Instead of playing along with this destructive charade and obediently agreeing that we are disabled because they say so, we ought to be standing up and screaming at the top of our lungs that the Emperor of Normality is butt-nekkid.

When Resistance Succeeds

In the early 1970s, a group of gay activists, who had some help from closeted gay psychiatrists, successfully fought to get the Diagnostic and Statistical Manual (DSM) edited so that it no longer classified homosexuality as a disorder. A documentary produced by Chicago Public Radio describes how they confronted prejudice and asserted their pride in their identity. (Many thanks to Lili Marlene for posting a link to the transcript.)

The classification of homosexuality as a mental disorder was not merely an issue of semantics. For decades, it had given the appearance of legitimacy and scientific rationality to society's entrenched discrimination against gay citizens:


...because psychiatrists believed that homosexuals were pathological, it (gave) scientific sanction for the rest of the country to see it the same way. Gays were routinely fired from teaching jobs, denied security clearances and US citizenship...for that matter they were barred from practising psychiatry, because you don't let someone who's pathological practice medicine on other people who are pathological.


Most psychiatrists gave little thought to the social consequences of their belief that homosexuality was a pathological condition. In their practices, they often counseled unhappy and anxious gays who wanted to be "cured" of homosexuality (or whose families wanted them to be cured) in order to become socially acceptable. This, of course, reinforced the psychiatrists' view that gays were tragically disordered and in need of a cure. They had never seen anyone who thought it was OK to be homosexual until they began encountering gay civil rights activists:


...then a relatively small group of homosexual activists started making noise about their designation in the DSM. Specifically the activists rejected the idea that they needed to be cured of their desire. They said that they only needed the stigma of insanity to be removed from homosexuality so that they could get jobs teaching children or practising psychiatry -- basically so that they could finally achieve equal rights.


At first, the gay activists' civil rights arguments had very little impact on the psychiatrists. After all, there was a great mass of scientific literature describing homosexuality as a mental disorder. Even most of the closeted gay psychiatrists thought of themselves as suffering from a mental illness. John Fryer, a gay psychiatrist, described his feelings in these terms: "From the very beginning I learned that it was pathology, it was very difficult to get over that... Because of our own internalised homophobia, most of us probably agreed that it was OK to be a disease."

Despite being closeted, however, Dr. Fryer became a victim of discrimination based on his employers' suspicions that he might be gay. He was dismissed by two hospitals, and he was unable to get teaching positions for which he applied. After these experiences, Dr. Fryer agreed to help the gay activists by giving a speech at the 1972 American Psychiatric Association (APA) convention describing the harm that had resulted from the classification of homosexuality as a disorder. Because he still did not dare to be known openly as a gay man, he wore a wig and a Nixon mask during his speech and called himself Dr. Anonymous. He received a standing ovation, and his speech caused many psychiatrists to reconsider their views on homosexuality.

Soon afterward, a number of liberal candidates who were sympathetic toward the cause of gay civil rights were elected as officers and directors of the APA. Empowered by this, the gay activists became much more vocal. Three activists were able to meet with the APA's nomenclature committee, which was the group responsible for the wording in the DSM. One of the members of the committee organized a forum on the issue, held at the 1973 APA convention, where the gay activists argued persuasively that diagnosing homosexuality as an illness was a tool of social oppression. Not long afterward, the diagnostic category for homosexuality was edited so that it encompassed only homosexuals who were troubled by their sexual orientation; it was later removed entirely.

What struck me about this accomplishment, in reading the transcript of the documentary program, was how quickly a small number of involved and committed activists could bring about such far-reaching changes. The protests against categorizing homosexuality as a mental illness began in 1970 with a group of gay activists in San Francisco, who got almost no sympathy from anyone at first; but, a little over three years later, they had achieved their goal of editing the DSM to remove the objectionable classification.

To anyone who doubts whether a small group of neurodiversity activists can change society's view of autism in just a few short years... history has shown that it's not impossible at all.

The Perils of Complaining

Many people in today's culture have become convinced that it is healthy to vent about one's problems on a regular basis. Psychological research indicates, however, that too much complaining can have the opposite effect, causing a person to become anxious and depressed about a difficult situation instead of taking constructive actions to deal with it:


A recent study found that teenage girls who vented to each other about their problems, from boy trouble to social slights, were more likely to develop depression and anxiety — and the same is likely true for adult women, says Amanda Rose, the author of the study.

"There's a definite belief in our culture that talking about our problems makes you feel better," says Rose, an associate professor of psychology at the University of Missouri, Columbia, whose research was published in the July issue of Developmental Psychology. "That's true in moderation. ... It only becomes risky when it becomes excessive."


The unfortunate consequences of too much complaining can be seen in some parents who spend large amounts of time on Internet forums and in other group settings where the members encourage one another to wallow in negativity about their autistic children. Kevin Leitch just wrote a post describing the sad state of parents who, because of their inability to accept the reality of their child's autism, spend much of their time obsessing about the magical cure at the end of the rainbow, instead of enjoying life with the child they actually have.

For those who have invested a great deal of time and mental energy in viewing their child's autism as an enemy and waging a war against their child's differences, it can indeed be difficult to consider other views and to recognize and deal with the complexity of the situation. However, those who make the effort to break out of the negative mindset are likely to find that their lives afterward are much more rewarding, as discussed by Anne C. in a comment on a post by Kristina about acceptance:


...while I’ve come across a fair number of parents who have moved from the deficit model to the complexity model of autism, I have *never* come across anyone who has gone in the opposite direction. I have never come across even one example of someone who comes to the mindset that their child can be whole, healthy, *and* autistic who has subsequently decided that they need to go back to the disease model.


That says it all.

Empathy Quotient 2.0

There's a well-known online test called the Empathy Quotient, created by Simon Baron-Cohen, which purports to measure a person's level of empathy by means of a questionnaire that asks how the person reacts to various situations.

This test is chiefly responsible for spreading the ugly stereotype that autistics lack the mental capacity for empathy. It doesn't measure much of anything, in fact, because the questions are vaguely worded and culturally dependent. (The issue is much the same as when racial minorities get low scores on culturally biased intelligence tests.)

So I've taken the liberty of putting together a new and improved test with more detailed scenarios—Empathy Quotient 2.0—which is designed primarily to measure the empathy level of non-autistics. You'll find an answer key at the end of this post.


Question 1: You are a middle school teacher. One of your students is getting bullied every day for being a "nerd." Do you:

(a) Suggest to his parents that they enroll him in a social skills class, so that he can learn to act more like the other students and avoid the bullies' attention;

(b) Punish the bullies and inform their parents that their behavior is unacceptable and must stop;

(c) Ignore the situation because that's just how kids interact and "nerds" are natural targets;

(d) Feel sorry for the "nerd" and tell him that he can hide in the classroom during recess.


Question 2: You are a hiring manager. One applicant clearly has better technical qualifications than the others. When you interview him, you notice that he rocks in his chair, does not make eye contact, and speaks in a monotone. Will you:

(a) Hire him because he is the most qualified candidate;

(b) Hire him, even though you think he's creepy, because you're afraid of being sued if you don't;

(c) Talk with your buddy in Human Resources about how to cover your ass when you reject him;

(d) Just tell him flat-out that you don't hire his kind. So what if he sues you? The jury probably won't like him any more than you do.


Question 3: A new family just moved into your neighborhood. Someone tells you that their son is autistic. Do you:

(a) Warn your kids not to go near the autistic boy because you've heard people like that can be dangerous;

(b) Don't say anything, but keep a careful eye on your kids whenever they go near the new family's house, and try to distract them from doing so;

(c) Insist that your kids play with the autistic boy, whether they want to or not, because it's their charitable duty to befriend the disabled;

(d) Teach your children some basic facts about autism so that they will have a reasonable understanding of the new neighbor's behavior.


Question 4: You supervise a group of software engineers. One of them, a quiet and shy woman who always has been a reliable employee, tells you that she just got an Asperger diagnosis and feels stressed out. She asks you if she can work from home next week. Your response:

(a) Tell her that's fine, and while she's gone, call a staff meeting and warn all her co-workers that she is mentally unstable;

(b) Say that she can stay home next week and just relax—there's no need to do any work while at home. Make sure nobody hears the conversation, so that you can fire her for absenteeism;

(c) Grant her request because you know she can be trusted to get the work done;

(d) Helpfully offer to let her telecommute permanently—that'll save you the trouble of having an autistic employee in your office, and you've heard those people would rather be alone anyway.


Question 5: You discover that your tax money is being used for genetic research to develop a prenatal screening test for autism. You feel:

(a) Outraged—since when did the government have any right to decide what kinds of people are worthy to exist?

(b) Unconcerned—you don't know much about autistic people, but you've heard they are nothing but trouble, and you figure the government probably knows what it's doing;

(c) Ambivalent—you might not abort for that reason yourself, but you're reluctant to pass judgment on others who have different views;

(d) Gleeful—you're hoping for a future where autism is nothing but a word for the history books.


Question 6: Your sister is engaged to marry an autistic guy. Do you:

(a) Wonder if her boyfriend is capable of a long-term relationship, because you read somewhere that autistics rarely marry, but you don't say much because you don't want to be rude;

(b) Go into a tirade about the terrible fate she'll be dooming her children to suffer;

(c) Give her your congratulations and best wishes for a life of happiness;

(d) Suggest that she keep her finances separate, just in case any problems arise, and mention that you know a good divorce attorney.


Question 7: You are driving your teenage daughter and some of her friends to soccer practice in your SUV. You overhear a conversation about something foolish that a boy did at school. "That's so autistic," your daughter says, giggling. Do you:

(a) Enjoy the conversation and laugh along with the girls;

(b) Feel mildly uncomfortable, but say nothing—after all, your daughter probably doesn't know what "autistic" means anyway;

(c) Ignore it because that's just how kids talk, and it's no big deal;

(d) Have a talk with your daughter about respecting human diversity.


Question 8: You are a psychologist with an interest in autism. In the course of your work, do you:

(a) Teach mainstream social behaviors to autistics, without giving much thought to the reasons for their differences;

(b) Scrupulously ensure that you follow the scientific method and avoid making biased assumptions in your research;

(c) Drum up support and grants for ethically questionable research projects by describing the autistic population as a crushing burden to society;

(d) Create bogus online tests and irresponsible stereotypes.


ANSWER KEY:

Question 1: a=3 points, b=10 points, c=0 points, d=6 points.

Question 2: a=10 points, b=6 points, c=3 points, d=0 points.

Question 3: a=0 points, b=3 points, c=6 points, d=10 points.

Question 4: a=3 points, b=0 points, c=10 points, d=6 points.

Question 5: a=10 points, b=3 points, c=6 points, d=0 points.

Question 6: a=6 points, b=0 points, c=10 points, d=3 points.

Question 7: a=0 points, b=6 points, c=3 points, d=10 points.

Question 8: a=6 points, b=10 points, c=0 points, d=3 points.


If your score is:

64-80: Bravo—you are a very fair-minded and enlightened person. Too bad the rest of society isn't like you.

53-63: You have above average empathy, but it could stand a little improvement.

33-52: Your level of empathy is in the average range. Unfortunately, you are "normal."

0-32: Ever thought about working for Autism Speaks?

If Psychologists Diagnosed the Cavemen

ABC has a new weekly series in its Fall 2007 schedule, Cavemen, which is about a group of Neanderthals who "struggle with prejudice on a daily basis... in 2007 Atlanta." The series is based on the cavemen characters featured in commercials by the GEICO insurance company. In one of those commercials, a caveman tries, without much success, to explain to an unsympathetic psychologist how much prejudice he faces in his everyday life.

I don't know if the TV series has any plans to include psychologists in its episodes; but if it does, here's what I'm guessing might happen, based on my observations of the behavior of certain psychologists in recent years.

First, someone will notice that the cavemen have several characteristic differences in speech and behavior. They have unusual posture and body language. Although they can speak English, they sometimes prefer to communicate with one another by grunts and gestures. They also have peculiar hobbies, such as carving stone figures and painting on cave walls. And if there are no cavewomen around, they have a really hard time getting girlfriends.

Starting from the assumption that any noticeable behavioral differences must be symptoms of a mental disorder, the psychs will carefully study and document every unusual trait in the speech and behavior of the cavemen that they can find. It won't be long before they develop a new diagnostic category, Caveman Disorder, which they'll describe as a tragic abnormality that causes significant impairment in social and communicative functioning.

There's a bit of a problem with this diagnostic category, however. Some Neanderthals appear to be quite successful in school and in the workplace, and some have found nice compatible cavewomen and are living in suburbia with a houseful of happy cavekids. How to explain that? Well... that's easy enough for the psychs. Just define "caveman" so that anyone who doesn't have significant problems in his life is not really a caveman, no matter how much he looks like one. Then convince successful Neanderthal parents that, although they may be normal, their children are suffering from Caveman Disorder (as shown by the bullying they endure in school, etc.) and must be treated at great expense.

In a few years, after all of the cultural differences of the cavemen have been redefined as hideous symptoms to be eradicated, no Neanderthal will dare to behave like one in public, which will make it easy to convince society that the world is plagued by a dreadful new epidemic and that there were no cavemen in previous generations. Politicians and nonprofit groups will declare war on Caveman Disorder and will allocate huge amounts of money to genetic research to prevent the entire caveman spectrum.

It's a good thing for the cavemen that they're just TV characters.

(Note: this post is not intended to express any opinion on the Neanderthal hypothesis.)

A Rose Garden of Ignorance

Before the current autism spectrum categories existed, some children who would today be classified as autistic were diagnosed as having "childhood schizophrenia." They were believed to inhabit a seductive world of hallucinations from which they could be coaxed back to reality through a lengthy course of psychoanalysis.

I remember being given a Rorschach inkblot test as a child, when I was young enough to be unaware of its ominous significance. (Thankfully, I wasn't packed off to an institution afterward, as some children of my generation were.) At the time, I just thought it was one of those picture puzzles with hidden shapes, like in an activity book for children.

I often bought paperback books at school, when they handed out those Scholastic Books fliers for kids to order from. One book that I bought, which was a bestseller in the 1970s, was called I Never Promised You a Rose Garden. It was a novel about a teenager who had been diagnosed with "childhood schizophrenia."

The book begins with the main character, Deborah, being taken by her loving parents to a mental hospital where she will be cured of her terrible illness by the efforts of a brilliant, insightful, and hardworking psychiatrist. Deborah doesn't seem to notice the change in her surroundings much, as she spends most of her time hallucinating a vividly detailed assortment of godlike characters and fanciful landscapes.

Well, except when she starts cutting herself. Could Deborah's self-injury have anything to do with the trauma of being separated from her home and family? Not according to the author, who blithely explains that one of Deborah's imaginary characters told her (for no apparent reason) to do it.

Just about everything Deborah does, throughout the entire book, is described as a consequence of her hallucinations, until at the end the heroic psychiatrist convinces her to choose sanity. Whenever Deborah gets upset about anything, it's because her unconscious mind is full of fear and anger, personified by the hallucinations. If she has any problems speaking—ditto. There's an explanation and a miraculous psychoanalytical cure for everything.

It's a neat little non-falsifiable paradigm with impeccable internal logic and no basis whatsoever in reality.

Hard to believe that large numbers of medical professionals and other well-educated folks actually thought that stuff made sense, isn't it?

Well, actually, considering all the ignorant crap that's being said about autistics today—no, it isn't.

Cognitive Dissonance

In response to a post about employment discrimination, James, a behavior analyst, made the following comment:


There is a sense of cognitive dissonance... If the employee was "exemplary" up to this point and all of a sudden they are deemed "unemployable," wouldn't that be illegal and unethical?


Cognitive dissonance, a concept developed by social psychologist Leon Festinger in the 1950s, refers to the mental discomfort that people experience when trying to hold two or more contradictory beliefs at the same time. They may deal with this discomfort by changing at least one of their inconsistent beliefs or by forming a new belief to explain away the contradiction.

It could be argued that prejudice is a form of cognitive dissonance because people who hold bigoted views often must deal with evidence that doesn't match those views. In the context of employment discrimination, however, I think the dynamics are somewhat different.

There are several ways in which an exemplary employee can fall victim to discrimination in the workplace without any cognitive dissonance being involved. Probably the most common way in which it happens is a change in management. The employee is hired by an unprejudiced manager and does well in that manager's department for many years. Then the employee gets a new boss who is prejudiced, doesn't know anything about the employee's past performance, and doesn't bother to look into it.

Another way in which discrimination can affect an exemplary employee is when a manager assumes, based on factors such as age or disability, that the employee's performance is likely to decline in the future. The employee's excellent record is irrelevant to this sort of prejudice because it is based on the stereotype that older and disabled employees, even if they once were good workers, are becoming less productive as time passes.

Because of the large global labor surplus, many managers also hold the view that employees are easily interchangeable. From this perspective, even if an employee has an excellent record, replacing him or her is no big deal. Companies with this sort of attitude see no downside to terminating employees who belong to an unpopular minority group, as long as the managers think they can do it without getting sued. For example, in jurisdictions where the employment discrimination laws do not cover sexual orientation, some companies have had inquisitions where they interrogated their workers en masse about their sexual preference and fired anyone who refused to answer. After all, there's always someone else in need of a job...

So I don't see much cognitive dissonance when it comes to employment discrimination. Sadly, there seems to be much more of it in parents' attitudes toward their autistic children. Like other parents, they see themselves as loving and caring people who adore their kids and want the best for their family. But at the same time, many strident voices in society are exhorting them to fear, loathe, and pity autistics. The emotional conflict in holding both of these views at once is, to use an all-too-familiar term, "devastating."

Some parents react by denying the possibility that their child could be autistic. They convince themselves that the doctors, teachers, or other professionals who recommended an evaluation had no idea what they were talking about. Any evidence to the contrary is explained away somehow, no matter how difficult it may be to rationalize.

Other parents accept the reality of their child's autism but seek to reconcile their conflicting views by insisting that it is not a permanent condition. They engage in magical thinking, such as believing that the latest fad diet or alternative treatment will make the autism disappear. Because they don't see their child as permanently autistic, they avoid having to consider the impact of their prejudices on their child.

In some tragic cases, parents who held these conflicting beliefs persuaded themselves (or were persuaded by others similarly inclined) that murdering their child was an act of love.

It doesn't have to be this way. Parents can free themselves from the cognitive dissonance trap by choosing to examine and reject society's ugly stereotypes about autistic people; but, as we know from other civil rights movements, it takes a great deal of time, effort, and mental toughness to challenge widespread prejudices.

Deconstructing Sally-Anne

Some unfounded myths about autism just don't want to die. The most notorious is the urban legend about children becoming autistic after vaccinations, which recently was described by Arthur Allen as a story with legs. Another myth that needs a wooden stake through its heart is the claim that autistics lack theory of mind, or the ability to understand that others have separate thoughts.

The theory of mind idea was a conclusion drawn from the Sally-Anne test, an experiment performed by Simon Baron-Cohen and other psychological researchers. The study included several groups of children, some of whom were autistic children. The researchers performed a skit that went like this:

Sally puts a marble in a basket and leaves the room. While she is gone, Anne removes the marble from the basket and puts it in a box. Sally comes back into the room, and the child is asked, "Where will Sally look for her marble?"

The response of most of the autistic children was to point to or name the box, while most of the non-autistic children identified the basket. The researchers concluded that the autistic children who chose the box were incapable of understanding that Sally did not know the marble was in the box.

Of course, this is not the only possible conclusion that could be drawn from the data, and it's not even the most logical interpretation. Because autistic children have significant differences in speech processing, it seems far more likely to me that they simply misunderstood the question.

The word "look" has several distinct alternative meanings in the English language. It can mean viewing a person or object, such as in the phrase "look at." It also can mean searching for a person or object outside one's field of view, when used in the phrase "look for." Distinguishing between these two meanings requires a child to have a fairly complex understanding of prepositions and idiomatic speech. (Edit: Dr. Morton Ann Gernsbacher has noted that the questions asked during such tests "are some of the most complex syntactic structures in the English language.")

Many autistic children learn the word "look" in the context of behavioral therapy with "look at me" prompts. Such children may not be aware that the word has an alternative meaning of searching for an item that is out of sight. They will interpret the question as "Where will Sally see her marble?"

Also, autistics are more likely to be visual-spatial thinkers, whereas the majority of the population consists of auditory-sequential thinkers. A visual-spatial thinker, upon hearing the question "Where will Sally look for her marble?" will translate that question into mental images of Sally, the marble, and the location of the marble. An auditory-sequential thinker, on the other hand, will focus on the action of looking as a sequential process: Sally first has to look for the marble before she can find it. There is an implied "first" in the question—where is the first place that Sally will look for the marble—but a child who processes language visually may not understand that the question has a sequential component. Instead, such a child may interpret the question as "Where will Sally have to look to find her marble?"

There are so many possible ways that an autistic child could misinterpret a question like that, it's frankly astounding to me that any researchers would think they had a basis for drawing any conclusions whatsoever from such a study.

Here's my belated Christmas gift to Simon Baron-Cohen: a few garlic cloves to put in Anne's box to keep the vampires away when it's buried.

You're not safe either, dude

Hey, you.

Yeah, I'm talking to you, dude—the guy over there biting his fingernails and getting all stressed out about the devastating autism epidemic that's supposedly going to destroy life as we know it.

I just heard some interesting news. The psychiatrists who have been working on the DSM-V decided to add some new disorders. Not to upset you or anything, dude, but it looks like you might meet the diagnostic criteria for one of them, Apocalyptic Melodrama Disorder. Symptoms include high levels of anxiety, irrational fears of catastrophe, and significant impairment of the ability to think rationally about news reports.

You say there are no scientific research studies that would support giving anybody a label like that? So what? When has that ever stopped the psychs before?

Okay, you think I'm being absurd. You're sure nothing like that could ever happen. You believe you're completely safe because there's nothing wrong with you.

And you know what? That's exactly how I would have reacted if anyone had warned me, a decade ago, that I belonged to a group of people who soon would be shunned worldwide and treated like defective subhumans because of the newly created concept of an autism spectrum. If anyone had told me that my tax money would be used to fund eugenics research to "combat" the existence of people like me, I probably would've laughed in his face and asked him what the hell he'd been smoking.

Live and learn.

I'm sure you haven't paid any attention to a word I've said. You're too busy enjoying the comfort of your peaceful little bubble of social conformity, secure in the knowledge that you're just like everyone else. You're normal... at least for now.

Oh, by the way, it might be a good idea for you to go visit a manicurist and get something done with those nails you've been biting. After all, you wouldn't want anyone to think you were exhibiting a symptom of a mental disorder. That would be very bad for your career prospects and your civil rights in general, you know.

Dude, I'm just trying to be helpful.