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.

What Our Culture Teaches

A recent post on Kevin Leitch's blog discussed autistics who say they want to be cured. The blog entry made the point that those who feel this way are entitled to make their own choices and to be treated with respect when they express their views. Several people commented that it should not be surprising that in a world where autism has been widely characterized as a medical problem, there are autistic people who view their existence and their difficulties in terms of this medical discourse, as our society has taught them to do.

Culture plays a very powerful role in how we define ourselves and our goals as we go through life. When we discuss whether or not there ought to be a cure for autism, this question itself arises from the constraints of our culture. That is to say, such a discussion could exist only in a society that has first defined a certain set of traits as comprising "autism" and has then placed this category of "autism" under the broader category of medical disorders.

Just a few generations ago, nobody was discussing whether autism ought to be cured because the concept of a medical disorder called "autism" did not exist. People who had traits that modern society would call "autistic" were taught to define their ways of interacting with the world in different terms. There were other groups of people who were categorized as mentally disordered on the basis of the cultural prejudices then existing. For example, women who sought equal rights were likely to be labeled as delusional and suffering from hysteria. Homosexuality was officially defined as a psychiatric disorder, and many gays went into therapy (voluntarily or otherwise) with the goal of curing them and making them socially acceptable.

The concept of cure fits into the broader expectation that we must always strive to improve ourselves. Modern society has taken industry's objective of continuous improvement and has applied it to the human body and mind, seeking to develop an efficient system for producing a new and improved population according to the experts' specifications. In a relatively short time, this cultural paradigm has largely replaced the old ways of humbly following ancient traditions and believing that God or the pagan gods intended us to be as we are.

For better or worse, this is the culture we live in now, and I'm certainly not arguing that we should all go back to living in traditional villages. The modern quest to improve ourselves and our children has brought about many good things, including widespread literacy, public sanitation, environmental protection, a decrease in vaccine-preventable diseases, and a health care system that (while still primitive in many ways) has played a major role in increasing the average human lifespan significantly.

Indeed, it is now within the realm of possibility that longevity research may enable people to live hundreds or even thousands of years, with a wide variety of artificial body parts and enhancements. It's a fascinating topic to contemplate; and while I haven't taken up transhumanism as a political cause or a personal philosophy, I see this as the direction in which our society is moving, and I believe it is imperative that we address the ethical issues associated with a culture of continuous improvement of the self.

The most vital issue, as I see it, is this: Who gets to decide what an improvement is? In this rapidly approaching future, will we respect the right of individuals to choose their own preferred ways of configuring their bodies and their brains, creating a vibrant kaleidoscope of human diversity as we evolve in ways as yet unimagined? Or are we heading toward a sci-fi nightmare where, in addition to having cosmetic procedures such as breast implants for the sake of popularity, each of us will be expected (or required) to get implants for our brains so that we can conform to a narrow range of socially acceptable thought patterns?

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/

Family History

My paternal grandfather, a native New Yorker, had some problems when he enrolled his young son in primary school in the early 1940s. Apparently, the lad wouldn't behave like the other boys or pay attention to the teacher, but spent all his time talking incessantly about his own particular interests. Send him away to military school, several people advised. That'll shape him up.

And so this skinny little boy, who wore eyeglasses and was fascinated with cameras and optical devices, was packed off on a train to a military school where he was the smallest and youngest pupil. Fresh meat, to put it bluntly. Several months later, his parents took pity on his obvious misery and brought him home; but what was to be done with him now?

Upon giving some thought to the alternatives, my grandfather decided to move to a smaller, quieter city where the school system was more welcoming. This was somewhat of a sacrifice, as he had never learned to drive and now found it necessary to hire a chauffeur, although he was not wealthy. His son thrived in the new environment, however, and went on to achieve success in his university studies as well. After graduation, his son got married and decided to become a photographer. That career choice was a disappointment, as he had planned for his son to go into the family business. Harsh words were exchanged, and neither showed much willingness to consider the other's point of view. Perhaps they were more alike than they realized.

A few years later, a granddaughter was born—an early reader who often darted away from her parents and spent much of her time pretending to be various fictional and historical characters. She was smart and full of energy, her father said; there was certainly nothing to worry about. Her mother, who felt overwhelmed at times, sought professional advice. There were mutterings about a dreaded condition called "autism." This only went to show, her father declared, that psychiatrists knew nothing whatsoever.

His darling little daughter simply needed more opportunities for enrichment, he concluded, and went on to enroll me in a well-regarded private school. My teachers were kept quite busy coaxing me down from trees on the school grounds and telling me that I had to wait until after school to be Curious George.  The principal ended up telling my parents that it would be best for all involved if they found another school for me.

A move to a small semi-rural town improved the situation considerably. The teachers were still somewhat baffled as to what to do with me, but when I got bored, they just let me sit quietly and read a book or draw pictures. There were enough trees and woods around my house so that I didn't feel the need to wander off during school hours, and the girls were friendlier and often asked me to jump rope or play four-square with them.

I grew up without ever being aware that there was anything about my development that might have been considered unusual, other than learning to read at an early age. Occasionally I heard my voice on a tape recording and thought that it sounded very different from the other people speaking, but I just figured that everyone probably thought their voice sounded weird on tape, and I didn't worry about it.

My high school and university studies went well. Although it took me a while to find a job that was suited to my skill set, I thought that was just a bit of bad luck, or possibly sex-based discrimination. It never even crossed my mind that some hiring managers might see me as abnormal. Maybe my parents should have warned me what to expect; but then, I'm not sure they fully understood it themselves.

There is now a younger generation in my extended family, which includes two autistic teenagers. Both of them are well adjusted socially and will be going away this fall to begin their university studies. They grew up attending private schools that were carefully selected to match their personality types and learning styles. They are confident of being able to succeed in their chosen careers, and I hope that they will find a job market that appreciates the vast range of human diversity.

I am cognizant of the fact that many families do not have the same opportunities for school choice, and I believe that this is a major issue that needs to be addressed through the political process. Instead of building segregated schools for autistic students, our society should be training all teachers to understand cognitive diversity; empowering parents to choose the schools that they believe are best suited to their children's needs, by way of vouchers and charter school programs; and funding these vouchers at a high enough rate to allow all teachers to be well paid, all primary classrooms staffed with aides, and all schools fully equipped with modern computers and other advanced technology.

Crabs in a Barrel

I was reading a discussion on a listserv where the people were bashing various presidential candidates. Of course, that's not at all unusual around this time in a presidential election year; but I noticed one rant that argued Obama should not be taken seriously because he was like "Superman… wearing his armor suit of ethnicity."

Probably your first thought was that the author of that rant must have been a bigoted, cranky white guy. But I'm familiar with the guy, and in fact he is not white, and he has a history of being a very outspoken advocate of civil rights. So I was disappointed to see that attitude from him. Disappointed, but not surprised. That sort of thinking has been so common in the African-American community over the years that it has a name: Crabs in a barrel. That name comes from a fable that goes something like this:


A bunch of crabs were sitting in a barrel at a seafood restaurant, waiting to be cooked. One of them said to the others, "Hey, you know what, if we all climb to the top and push on the lid, it'll come off and then we can escape."

The other crabs all laughed. They knew it was impossible to escape. What could this foolish dreamer be thinking? It was nonsense. Couldn't be done. Not even worth trying.

After a few minutes, when it was clear he wouldn't be getting any help, the one hopeful crab climbed up and started pushing on the lid alone. The other crabs just laughed harder, until they heard a faint creaking noise and realized that the lid was starting to shift a little. Then they all got angry. How dare one crab try to escape by himself? He was just another crab, and he needed to be shown that he was no better than the rest of them.

So they grabbed the crab who had been trying to escape and dragged him back down to the bottom of the barrel. They all got cooked and eaten soon afterward, but at least they had the satisfaction of knowing that no other crab was able to achieve more than they had.


Of course, I don't mean to suggest that this kind of self-destructive envy is in any way unique to the politics of the African-American community. It's not. Just about every disadvantaged minority group has some version of it. I see it in the autistic community, too, with all the carping about "shiny aspies." Some people seem to think that if a talented, well-educated autistic professional accomplishes something worthwhile, it shouldn't even be mentioned because it might give the wrong impression. Just who does this shiny aspie think he is, anyway? He's just another crab.

Granted, there are a few high achievers in the autistic community (just as in any disadvantaged minority group) who try to distance themselves from the group by claiming to be much more intelligent and capable. That false claim does need to be challenged, in the strongest terms; but when some in our community mock high achievers generally, for no other reason than the fact of their accomplishments, that's wrong. It's just ugly, corrosive envy, and it is harmful to the community as a whole.

Former Clinton Officials Endorse Obama

Several former Clinton Administration officials who worked on disability policy issues endorsed Barack Obama and issued an open letter on Wednesday discussing Senator Obama's deep understanding of the barriers and discrimination faced by people with disabilities and his plan to create change and empowerment.

They are asking readers who agree that Barack Obama is the best candidate on disability issues to pass this open letter on to others. Please feel free to copy and post it elsewhere.


FORMER CLINTON ADMINISTRATION OFFICIALS ENDORSE BARACK OBAMA

“Barack Obama is the disability community’s best choice for change.”

February 6, 2008

Dear Friends:

We were privileged to work for President Bill Clinton in senior appointed positions related to disability policy and programs. We are proud of the progress made during the 1990s on behalf of the disability community and all Americans.

Yet, in 2008, we believe that Barack Obama is the disability community’s best choice for change. We support Barack Obama for the Democratic nomination for President of the United States. We urge you to join us in voting or caucusing for Barack Obama.

Every day, people with disabilities face unimaginable barriers and blatant prejudice that most Americans never encounter. As a result, people with disabilities are employed at a much lower rate than other Americans. They have a higher poverty rate and a lower home ownership rate. Students with disabilities are less likely to earn a high school diploma and even less likely to get a four-year college degree. The number of people with disabilities who depend on Social Security Disability Insurance and Supplemental Security Income is rising while fewer and fewer are able to live independently and support themselves.

These challenges did not arise for the first time when George W. Bush entered the White House. The problems are stubborn and long-lasting. Certainly, the empty rhetoric and lackluster policies of the past seven years have made a difficult road more difficult for Americans with disabilities. We believe change --- dramatic change --- is necessary and possible. We deeply believe that Barack Obama is the best candidate to lead our nation and to help us change our world.

Barack Obama’s goal is our goal --- a world free of barriers, stereotypes, and discrimination. He has proposed a Plan to Empower Americans with Disabilities that sets the right agenda for achieving that goal. We urge you to read his Plan by going to www.BarackObama.com, clicking on the “Issues” tab, and then clicking on “Disabilities,” or going directly to http://www.BarackObama.com/issues/disabilities. Even more important than the specific details of the plan is the fact that he has a plan. He has focus.

Barack Obama’s understanding of the hopes and dreams of Americans with disabilities and their families, and his knowledge of the barriers they face, run deep. He knows what it means to be denied health insurance because of one’s pre-existing condition: his own mother worried about whether her new health insurance policy would deny her coverage as she lay dying from cancer. He learned about the every-day barriers people with disabilities face from his father-in-law, Frasier Robinson, who lived with multiple sclerosis. From his wife Michelle, he learned what families must overcome when supporting a loved one with a disability. Barack Obama has faced down and helped others topple bigotry all of his life. As a community organizer, a civil rights attorney, a state legislator, and a U.S. Senator, he has constantly reached beyond what divides us to forge a working majority for hope. He believes our nation’s best days lay ahead of us --- not behind us. He helps us believe in the most powerful American dream --- that together we can build a more just and perfect union, that together we can change the world. For Americans with disabilities, this is the kind of leader we need. Barack Obama has the experience we must have in the next President of the United States of America.

As President, he will bring us together --- all of us --- to build a society in which every person can feel that they belong, each person can achieve to the limits of his or her abilities, and all people can make a difference. We hope you will join us in supporting Barack Obama for President of the United States. Thank you very much.

Sincerely yours,

Seth Harris, Former Counselor to the U.S. Secretary of Labor, and Former Acting Assistant Secretary of Labor for Policy

Paul Steven Miller, Former Commissioner, U.S. Equal Employment Opportunity Commission, and Former White House Liaison to the Disability Community

Sue Swenson, Former Commissioner, Administration on Developmental Disabilities, U.S. Department of Health & Human Services

Robert R. Williams, Former Deputy Assistant Secretary, U.S. Department of Health & Human Services

More Clinton Dirty Tricks

The results of the Super Tuesday primary elections were split almost exactly down the middle on the Democratic side, which has thrown Hillary Clinton into a panic; she was so overconfident going into the primary season that she expected to have a lock on the nomination by now. So, what is her campaign doing? Has she started listening to voters more, trying to improve her understanding of their concerns, or otherwise becoming more responsive to the people?

Not a chance.

Instead, the Clinton apparatchiks, resorting to their same old corrupt political business-as-usual ways, are sneaking around in the proverbial smoke-filled back rooms and trying to twist Democratic Party rules to give their candidate extra delegates to the nominating convention. Several months ago, the Democratic National Committee stripped both Michigan and Florida of their convention delegates in response to their disobedience to party rules in changing the dates of their primary elections. Accordingly, the presidential candidates, including Senator Clinton, pledged that they would not campaign in these states. Barack Obama, John Edwards, and several minor candidates removed their names from the ballot in Michigan (but were unable to do so in Florida) and honored their pledge not to campaign.

Hillary Clinton promptly broke her promise by leaving her name on the ballot in Michigan. She also visited Florida and pretended that she wasn't campaigning there. Now, having won a majority of the votes cast in these two states by campaigning unopposed, she's trying to convince Democratic National Committee officials to change the rules in the middle of the game and allow Michigan and Florida to send delegates to the convention.

Here is a link to a petition condemning this underhanded tactic:

http://www.thepetitionsite.com/1/Give-Us-Fairness

If you are concerned about the subversion of America's political party system by Hillary Clinton's sneaky, cheating schemes, please sign the petition and let the Democratic National Committee know about your views.

Avoiding Abusive Counselors and Support Groups

From time to time, I’ve come across horror stories about counselors and support groups. And it occurred to me that although I have seen many articles that provide lists of "red flags" for identifying potentially toxic and abusive romantic partners, I haven't seen any similar checklists giving advice to autistics (and others with neurological differences) on what to avoid when looking for support and counseling.

People who are looking for a counselor or a support group often are emotionally vulnerable and are at risk of ending up in an unhealthy situation which, just like a marriage to an abusive spouse, will drain away their self-esteem and leave them feeling inadequate and dependent. Here's my list of danger signs indicating when a counselor or support group is becoming abusive (and yes, I've seen every one of these mentioned somewhere; I didn't just make them up. Please feel free to post your own suggestions in the comments, along with links to similar articles if you know of any.)


(1) Instead of being treated as an individual, you are given a lecture about what is wrong with "people like you."

(2) You are advised to make extensive changes to your behavior and lifestyle so as to become indistinguishable from your peers.

(3) When you talk about your concerns, you're dismissed as paranoid, unreasonable, or too sensitive.

(4) If you happen to be unemployed, you are told that you're just a lazy slacker and would have found a job by now if you'd tried harder.

(5) You mention something positive that you've accomplished relating to a special interest, and you get ridiculed or told that you are displaying poor social skills by bringing up a topic that nobody cares about.

(6) If you haven't found a compatible romantic partner, you are told that it's because nobody wants to date people like you and that the only way you'll find a girlfriend or boyfriend is to pretend to be completely different.

(7) You say that you feel dissatisfied with a job that does not challenge you intellectually or provide opportunities for career advancement, and you are told that you should shut up and be grateful anyone was willing to hire you at all.

(8) If you express a positive attitude regarding any aspect of your neurology, you are told that this is a psychological defense mechanism and that it's clear you are in denial about the true extent of your misery.

(9) When you disagree with the counselor or group, you are told that you are being childish and that your contrary behavior is a symptom of your disorder.

(10) If you mention that you have thought about leaving the counselor or group, the immediate response is an outraged tirade to the effect that if you are irresponsible enough to do so, you'll inevitably waste the rest of your life as a worthless burden on your parents and/or society.