Autism Cures? (Thomas Sowell)

"New Ways to Diagnose Autism Earlier" read a recent headline in the Wall Street Journal. There is no question that you can diagnose anything as early as you want. The real question is whether the diagnosis will turn out to be correct.

My own awareness of how easy it is to make false diagnoses of autism grew out of experiences with a group of parents of late-talking children that I formed back in 1993.

A number of those children were diagnosed as autistic. But the passing years have shown most of the diagnoses to have been false, as most of these children have not only begun talking but have developed socially.

I did absolutely nothing to produce these results. As a layman, I refused to diagnose these children, much less suggest any treatment, even though many parents wanted such advice.

As word of my group spread, various parents would write to ask if they could bring their child to me to seek my impression or advice. I declined every time.

Yet, if I had concocted some half-baked method of diagnosing and treating these children, I could now claim a high rate of success in "curing" autism, based on case studies. Perhaps my success rate would be as high as that claimed by various programs being touted in the media.

If a child is not autistic to begin with, almost anything will "cure" him with the passage of time.

My work brought me into contact with Professor Stephen Camarata of Vanderbilt University, who has specialized in the study of late-talking children— and who is qualified to diagnose autism.

Professor Camarata has organized his own group of parents of late-talking children, which has grown to hundreds, as compared to the several dozen children in my group. Yet the kinds of children and the kinds of families are remarkably similar in the two groups, in ways spelled out in my book "The Einstein Syndrome."

The difference is that Professor Camarata is not a layman but a dedicated professional, with decades of experience— and he too has expressed dismay at the number of false diagnoses of autism that he has encountered.

What Camarata has also encountered is something that I encountered in my smaller group— parents who have been told to allow their child to be diagnosed as autistic, in order to become eligible for government money that is available, and can be used for speech therapy or whatever other treatment the child might need.

How much this may have contributed to the soaring statistics on the number of children diagnosed as autistic is something that nobody knows— and apparently not many people are talking about it.

Another factor in the great increase in the number of children diagnosed as autistic is a growing practice of referring to children as being on "the autistic spectrum."

In other words, a child may not actually be autistic but has a number of characteristics common among autistic children. The problem with this approach is that lots of children who are not autistic have characteristics that are common among autistic children.

For example, a study of high-IQ children by Professor Ellen Winner of Boston College found these children to have "obsessive interests" and "often play alone and enjoy solitude," as well as being children who "seem to march to their own drummer" and have "prodigious memories." Many of the children in my group and in Professor Camarata's group have these characteristics.

Those who diagnose children by running down a checklist of "symptoms" can find many apparently "autistic" children or children on "the autism spectrum."

Parents need to be spared the emotional trauma of false diagnoses and children need to be spared stressful treatments that follow false diagnoses. Yet the "autism spectrum" concept provides lots of wiggle room for those who are making false diagnoses.

Real autism may not get as much money as it needs if much of that money is dissipated on children who are not in fact autistic. But money is money to those who are running research projects— and a gullible media helps them get that money.

The decline had already started by 1979. Somewhere between 1974 and 1977

You are exactly right.

we used to jokingly call him Senator Vascectomy) had already started the self esteem programs in the CA public schools. I sort of use that as a symbolic marker for the beginning of the end.

Yes, the "self-esteem movement". blech. I remember it well. Immediately prior to 1974, in my highschool, when "conflict resolution" was in its earliest stages, and we were encouraged to work out "conflicts" with our parents using a pillow to represent our "parents" and what would like to say to them... When Melville's Billy Budd was taught in my honors Lit class from a feminist perspective, when the first grads of Berkeley's free speech movement were teaching at my school, when Planned Parenthood had an on-campus rep at my school; when it was resolved that the open-classroom (architecturally) had contributed greatly to lower class work and poorer students... then, we began to see the inkling of the "self-esteem movement".

Being "mellow" and "being yourself" was the next phase of the "let it all hang out" mental fashion coda.

And what was going on in business training programs in SF during this time was.. well.. right out of a scientology manual of today. Truly, trippy. It excused sloppy standards and found alibis for incompetence.

But I refused to give up my fantastic and entirely wearable and durable polyester business suits for Levi Jeans and the new "peasant look". I travelled a lot. I've always been well pressed. :)

I think it goes something like this. A researcher or a group of researchers publish a seminal article on a very rare, devastating and poorly understood condition. “Wow, cool!” think their lesser colleagues and jump on the bandwagon, producing a whole slew of “companion” (academic codeword for “copycat”) literature. Of course, since the disorder is, as I mentioned, rare, subjects are in short supply; and, because the disorder is poorly understood, there isn’t much to discuss, except descriptively and by outlining the diagnostic criteria. Thus, these diagnostic criteria get “revised” and “updated” — meaning they get expanded — which, of course, kills two birds with one stone: generates more subjects for study and gives researchers something new to write about. At some point, the flurry of scientific and administrative activity spills over into mainstream media. This is where all hell breaks loose, particularly if the disorder affects children. The media reports how the original researcher estimated circa 1908 that there were only about 80 people in the world with this condition and now 1 in 6 has it!! Hack historians begin cavalierly diagnosing famous figures from the past. School administrations push the diagnosis relentlessly, as a way of lightening up their overloaded classrooms by sending those children who aren’t perfectly obedient and docile to special ed. Therapists and some parents also push the diagnosis relentlessly, as a way of getting drugs or services that, they figure, can’t hurt. Doctors begin diagnosing left and right as well, with an eye towards their malpractice carrier — for, a false positive diagnosis is not malpractice, but failure to diagnose is. People start talking about an “epidemic”. In order to make sure all the afflicted are discovered, diagnostic criteria are expanded even further, thus making the “epidemic” a self-fulfilling prophecy. Meanwhile the researchers, who have done little except establish protocol and modify it a few times claim, that they have made “tremendous progress towards understanding” the condition, though they have no more clue than 50 years ago as to what causes it, how to prevent it, or how to cure it. In other words, it becomes a fad — and it hardly benefits those people who truly suffer from the condition.

Strictly speaking, the problem with the ASD label today is not overdiagnosis, but overmedicalization. After all, it is, as I said, a matter of protocol. The powers that be decide what the diagnostic criteria are, and if a large swath of humanity meets those criteria, then it is what it is. What bothers me, however, is that there is a definite trend towards pathologizing socially troublesome behaviors. As someone once wrote, a child can no longer be simply boisterous or simply shy without provoking inquiry into whether he is suffering from the Condition Du Jour. And if he ever had anything like speech delay, then perfectly normal behaviors (dumping girlfriend, interest in nuclear physics) will be interpreted as a manifestations of “lifelong difficulties” (relationship troubles, narrow interests). I few months ago, in a conversation with a relative who happened to be a physician, I mentioned an 18th-century German archaeologist who from childhood was keenly interested in clues that old junk offers about people who made it or owned it, and thus spent his early years rummaging through rubbish heaps instead of playing with other boys. “Ah, he must have been autistic,” the doctor said, dismissively. To his contemporaries, he was merely eccentric — to her, he was a head case. In the 18th century, he became an eminent scholar, a published author, and a highly regarded expert on antiquities. Today, he would have been thrust into an institution, away from rigorous academic pursuits, and indoctrinated that he is physically and mentally incapable to function successfully in the world of “normal” people. This is ridiculous, really. Must every slight departure from the mainstream be characterized as a “disorder”?

And folks, please don’t say things like “My daughter has it, autism is real, etc.” It may be real in your case — but the undoubted existence of a condition does not justify slapping the label on people who merely don’t follow social conventions and expectations closely enough. The conflation of culture with medicine is truly frightening. And overdiagnosis isn’t as harmless as some have claimed. A false positive has devastating effects on a family. Children are placed in educational environments that are wrong for them. They are subjected to endless testing. And they grow up believing they are handicapped and different (in a bad way) from everyone else. And let’s not ignore the parents. There are people who divorce in the wake of a diagnosis, people who kill themselves. And even when they do not, a false diagnosis leaves psychological scars that can never truly be healed.

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