Experts Suck

I am sorry that I lost my temper on my last post. And I am sorry that I am insulting every expert on everything everywhere in the title of my post here. But I am going to leave it there because that is how I feel right now.

Reading these two columns has just made me sick. I feel like someone punched me in the stomach.

Here is Olmsted's follow up. If you haven't already, read my previous entry first.

The Age of Autism: March of the experts
by Dan Olmsted
Aug 17, 2005, 21:49 GMT

WASHINGTON, DC, United States (UPI) -- The news that the first child diagnosed with autism got better after medical treatment -- while leading experts didn`t make the connection -- suggests how research and reality have been distorted for decades.

As The Age of Autism reported Monday, the child known as Case 1 is alive and doing remarkably well in the same small Mississippi town he grew up in. Although we didn`t talk directly to "Donald T.," his brother told us that he had a "miraculous response" to gold salts treatment at the age of 12.

It cleared up a devastating case of juvenile arthritis and -- astonishingly -- made a marked difference in Donald`s autism, he said.

"When he was finally released, the nervous condition he was formerly afflicted with was gone," his brother said of the two- to three-month gold salts treatment in 1947.

"The proclivity to excitability and extreme nervousness had all but cleared up, and after that he went to school and had one more little flare-up (of arthritis) when in junior college." He also became "more sociable," his brother said, and was invited to join a college fraternity.

That was 58 years ago, yet we`re not aware of any mention in the millions of words written about autism that this very first case may have gotten better following a novel medical treatment.

Instead, today`s mainstream medical experts dismiss the idea of biomedical interventions such as anti-inflammation and detoxification therapies as dangerous hooey perpetrated by quacks and charlatans.

Yet the treatment Donald got was patently biomedical: Medicine prescribed by a doctor to treat a physical illness appears to have had a positive effect on his mental disorder.

The official hostility to such approaches is currently so great that the only research under way on the topic is funded by parents. An official at the National Institutes of Mental Health told The New York Times last month that it "isn`t responsible" to prescribe chelation, which is designed to eliminate heavy metals from children with autism.

Yet dozens of parents -- and, for that matter, dozens of doctors outside the mainstream treatment community -- say the treatments have made huge improvements.

Some of them have banded together at generationrescue.org; they argue that autism is mercury poisoning (primarily from a preservative that was used in vaccines) and that getting the mercury out has cured some children of autism and vastly improved the condition of others.

Other doctors, many of them connected with Defeat Autism Now!, a project of the Autism Research Institute, are using everything from special diets to B vitamins to folinic acid. They cite similar successes, and many parents agree.

These parents and doctors get the modern equivalent of what awaited the parents of early autistic children -- skepticism and scorn.

In the beginning, there was strong suspicion -- in many quarters, certainty -- that bad parenting caused autism. This came in part from the striking fact that so many of the parents of those early cases were successful, affluent, career-oriented professionals. Even more suspiciously, many of the mothers had college degrees and -- alert the mental-health authorities! -- their own careers.

"One other fact stands out prominently," wrote Leo Kanner, the child psychiatrist who first identified autism, beginning with DonaldT., in his landmark 1943 paper on the disorder. "In the whole group, there are very few really warmhearted fathers and mothers. ... The question arises whether or to what extent this fact has contributed to the condition of the children."

While Kanner also noted that the children appeared to have been autistic from birth -- and thus the parents` personalities could not entirely explain their children`s disorder -- it set the stage for a tragic morality play over the next several decades.

The worst was Bruno Bettelheim, who wrote in "The Empty Fortress" in 1967: "I believe the initial cause of withdrawal is rather the child`s correct interpretation of the negative emotions with which the most significant figures in his environment approach him. ... The tragedy of children fated to become autistic is that such a view of the world happens to be correct for their world."

We couldn`t help thinking of all that when Donald`s brother told us Kanner suggested "the best thing that could happen" would be to place Donald with another family -- a childless farm couple. The parents complied, but it was only after the
juvenile-arthritis attack four years later, and the subsequent gold-salts treatment, that Donald dramatically improved.

Yet Kanner attributed the change to "the intuitive wisdom of a tenant farmer couple, who knew how to make him utilize his futile preoccupations for practical purposes and at the same time helped him to maintain contact with his family."

It wasn`t until Bernard Rimland wrote Infantile Autism in 1964 that the idea of the "refrigerator mother" began to change -- slowly.

What makes Donald`s case all the more interesting is that none of the specialists his family took him to -- including the Mayo Clinic -- could identify the cause of his uncontrollable fever and joint pain when he was 12, his brother said. It wasn`t until Donald`s father happened to mention the affliction to a practicing physician in a nearby small town that juvenile arthritis, a rare autoimmune disorder, was identified.

Here is how one of our correspondents summarized this sequence:

1. The world expert (Kanner) was incompetent with respect to medical assessment of illness.

2. He assumed that they needed to get Donald away from his parents. They really did think it was a parental abuse problem back then.

3. Kanner mistakenly attributed Donald`s progress to the "therapist" when it was really the medicine.

4. Recovery is possible with biomedical treatment.

5. Biomedical treatment ideas are not likely to come from the autism experts (Kanner) or the prestigious clinics (Mayo). They come from real medical doctors who know how to recognize real illness and autoimmunity in the kids.

Contrast that analysis with the standard dismissals when parents claim biomedical treatments have helped:

-- They may be indulging in wishful thinking -- wanting their child to improve so badly that they delude themselves;

-- They may have tried another treatment such as behavior therapy that is actually responsible;

-- Their child may not have been very autistic in the first place.

Does anyone think Donald T., the first child diagnosed with autism, was not very autistic in the first place? Surely, Donald`s family was not "imagining" his improvement, since they weren`t even trying to treat his autism.

Of course, that intuitive, wise, childless farm couple may have made all the difference -- that is, if you think autism is caused by unwise, non-intuitive mothers and fathers (bad parents).

We don`t know what to make of Donald`s evident improvement -- and the fact that it has stayed buried for so long even as parents and researchers frantically turn over every stone to uncover treatments for this burgeoning, awful disorder.

We acknowledge we have not met Donald and are unable to vouch for his brother`s account, although we certainly found him credible and convincing.

But it does make us wonder whether much has changed.

These days, parents aren`t condemned for having autistic children -- just for doing something about it without the permission of experts who are certain nothing can be done.

In upcoming columns we`ll look at the implications of Donald`s treatment.

E-mail: dolmsted@upi.com