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Wednesday, September 07, 2005

The Age of Autism: One angry mom

By DAN OLMSTED

Ginger Taylor of Los Angeles describes herself as "a thirty-something wife of the nicest man alive and mother to the two cutest boys ever. I am a former Johns Hopkins-educated family therapist, and also a Web designer. Most importantly I am a mom. Chandler, born in March '02, is autistic, and Webster, born in Sept. '00, is a mostly typical boy, with a few Autism Spectrum Disorder traits."

When Taylor saw the recent Age of Autism columns on the first child diagnosed with autism -- and how he appeared to improve after treatment with gold salts in 1947 -- she got mad. As a Hopkins alumnae and a family therapist, she could not believe that doctors at Johns Hopkins, where that first child was diagnosed, had somehow missed the possible connection.

Leo Kanner, the leading child psychiatrist of his day, first diagnosed autism in a child known as Donald T., who came to see him at Johns Hopkins in Baltimore in 1938 at age five. Seven years later, Donald had a life-threatening attack of juvenile arthritis and was treated with gold salts at the Campbell Clinic in Memphis.

That is according to Donald's brother, who still lives in the small Mississippi town where the two grew up. Donald also lives there, but has not responded to our request for an interview.

Following are excerpts of a post by Taylor on her blog, adventuresinautism.blogspot.com.

--

Looking around, I seem to be the only one who is so upset with Kanner for not giving Donald's medical treatment the consideration it deserved in assessing his considerable improvement from his "nervous condition." I think my anger at him for this stems more from a professional place than the place of a parent, although the two together are a potent combination.

As I have mentioned elsewhere, I am a former marriage and family therapist and earned my master's degree at Johns Hopkins. I also worked there as a grad student, doing my practicum in the psychiatry department in an outpatient program for adolescent substance abusers.

With my professional history, I feel able to put myself in Kanner's shoes, in a basic way, in that I treated 12-year-olds at Hopkins, and I know what a huge responsibility it is. My criticism of him, I believe, is founded because I know how irresponsible it would have been for me if I had done a history on a patient, and not to included something so vital as the near death, extensive medical treatment and subsequent vast improvement of two very serious medical conditions, of said patient.

If I took patient histories this seriously as a 27-year-old grad student getting her master's, then Leo Kanner, seasoned medical doctor and Psychiatrist, sure should have taken it all the more seriously.

If I went to the home of a patient to do follow-up after not seeing him for a few years, and noted that he had managed to kick heroin during a break in drug treatment, after a change in living arrangements and after a three-month hospitalization for a life-threatening illness, and I only reported the great living arrangement that he was in, I would not be doing my job. It could end up harming the patient, his family and heroin users everywhere who could be offered a treatment that might have stemmed from whatever medical treatment could have sped his recovery.

Is there a new medical treatment that can help heroin users kick the habit? Who knows? Ginger didn't write it down, so no one looked into it.

Even if the family had not mentioned the hospitalization or attributed his recovery to it at the time, it would still be my responsibility to get ahold of his medical records even if only to assure continuity of care. This would be so much more true of Dr. Kanner as he defined autism and therefore took responsibility for every aspect of the diagnosis and all of the subjects that he took under his care. Add to the fact that he was a doctor at Hopkins in the first half of the 20th century, when doctors were considered godlike and few people questioned them, and his breach becomes all the more egregious.

In defense of Kanner, I don't think that he was a heartless parent-basher and he should not be placed any where near (Bruno) Bettelheim, who destroyed so many lives and families. I just don't think that he was thorough enough at a moment where it really, really counted. He made a freshman mistake that cost many people dearly and left the door open for Bettelheim (who blamed parents for their children's autism).

"In further defense of Kanner, I have not read his follow-up paper, and I am taking the word of (The Age of Autism) and others who have written about it. I tried to read it last week but got so emotional about what happened to these children and couldn't continue. I will reserve the right to amend my judgment of Kanner after I get the guts to read his paper.

In respect to the gold salts, I did not read the discussion of how the gold salts treatment may have impacted Donald's "nervous condition" as a recommendation for parents to run out and try gold on their children, but merely as a discussion of how gold may have made a change in this specific case and what that might tell us about autism and its potential treatments. What I took away was not that gold could mitigate my son's autistic symptoms, but that Donald's treatment represents another case that points to the toxicological and autoimmune features of autism.

I don't see gold as the answer to my son's autism any more than I see kitchen mold as the answer to his ear infection. But the happy accident of a moldy petri dish in 1928 has led to hundreds of antibiotics to treat everything from a skinned knee to anthrax. The happy accident of Donald's recovery might have meant the same for autism, had Kanner written it down.

If it had come to the attention of the medical community that gold salts had improved autism, then autism may have been recognized as an autoimmune disorder long before the 21st century. It may have also have shed light on how the body's immune system works and how autoimmune responses are triggered, giving immunologists information that could have moved the entire field forward. It could have led to a better understanding of toxicology and how heavy metals could contribute to neurological disorders, and lead may have been removed from paint decades earlier than it was.

At the very least, we might know what autism, in all its forms, is by now.

Would any of these things have happened? Who knows? Leo didn't write it down.

This ongoing series on the roots and rise of autism welcomes reader comment. E-mail: dolmsted@upi.com.

Copyright 2005 by United Press International. All Rights Reserved.

Posted by Becca


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