August 27, 2005

In Defense of My Ire

Yesterday in “A Potential Much Brighter Than Our Fears”, Kathleen Seidel wrote about Leo Kanner, Dan Olmsted and Donald T. She used my mini-rant and subsequent comments about the story as a launching point. She made the case that my rage against Kanner is misplaced. Please allow me a little further defense of my anger and a little of my own perspective on Dan Olmstead’s reporting.

In her piece, Kathleen takes the position that Dan’s reporting and Donald’s brother’s memory may not be an accurate account of what happened to Donald when he was 12. I certainly recognize her the right to go back and question all that has been reported to see where the published story could have changed in the last half century, but for the purposes of this discussion, I am going to go ahead and assume that the story is a basically accurate one until we have any evidence to think otherwise.

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 masters degree at Johns Hopkins. I also worked there as a grad student, doing my practicum in the psychiatry department working 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 a 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 masters, 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 in 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 every where who could be offered a treatment that might have stemmed from what ever 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 a hold 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 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.

In further defense of Kanner, I have not read his follow up paper that is referred to above, and I am taking the word of Olmsted 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. With learning of the death of Abubakar yesterday, there is not a chance that I will be able to do this for at least a few weeks. I am much too raw to take that on right now. I hope you will excuse my less than thorough research before writing.

Now onto Dan Olmsted’s less than thorough research before writing.

His decision at the beginning of the year to take nothing for granted and start from scratch in his investigation has broken new ground in the understanding of autism. We can certainly discuss his biases and any unintended consequences of his reporting, but I personally don’t hold him to the same level of accountability as I do Kanner. He is a reporter and his job is to tell as much of the story, as objectively as possible. We can certainly discuss how objective he is, but we should keep in mind that in the autism debate, almost no one can claim objectivity. However, even if you question his motives, no one can deny that he is telling as much of the story as he can find. In that respect he is doing his job very well.

The criticism of Olmsted for seeking out Donald’s brother seems to me a theoretical discussion on patient privacy until we know whether or not Donald gave his brother permission to give the interview. It could be that Donald did not want to talk to reporters himself, but that he didn’t mind his brother talking to Olmsted.

In respect to gold, I did not read his discussion of how the gold salts treatment may have impacted his ‘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 lead 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 to the medical community that gold salts had improved autism, then it 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 may know what autism, in all its forms, is by now.
If that were the case, it very well may be that there would be no divide between the neurodiversity and biomed communities, as we might know how much of ‘autism’ is a metabolic disorder and how much is just who that person was born to be.

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

Kathleen ends here piece with these two thoughts:

Although Dr. Kanner was not omniscient (what human is?), there is no need to rage at him.

Dr. Kanner is of course subject to human error and should ultimately be forgiven for his mistake. I am working on that, and my anger at him is subsiding. But no matter the emotional reaction of his critics, the fact still stands that he made a costly mistake.

Rather, the story he told of his patient, Donald T, should reassure parents that our autistic children have potential much brighter than our fears.

The title of Kathleen ‘s piece is beautiful.

I love being told that many of the fears I have for my son will likely fall away as he grows and becomes the man that he will be. I am grateful for the much needed reminder. Donald’s story does give me hope, although I want to point out, that it is hope that he will respond as positively to a medical treatment as Donald did.

Ironically, the thing that gives me the most hope is the existence of the Nurodiversity Community who so often strongly oppose parents like me and even, on a few occasions, me specifically. The attacks from this group sting sometimes, but they show me if that if medical treatment is not fruitful for my son, he still may be able to grow up to advocate for himself. It is an odd thing to take such comfort in such criticism, but I will take the comfort from where ever it comes. Thank you.


Anonymous said...


You haven't read Dr Kanner's paper. I have, Kathleen has. I'm glad that you were not upset at Kathleen and that you are trying to be rational.

BUT even if you had read Dr. Kanner's 1971 paper that was a follow up... for crying out loud do you not know the difference between a paper that tries to condense a stack of files and the files themselves?

You have no idea how throrough he was, but you take the word of that idiot Dan Olmsted.

If Donald's brother gave him permission, why on earth would he have not said, "oh, my brother called and said I could talk to you."

Or, "wait a minute while I call my brother Donald and ask him if it's ok to talk to you."

Olmsted should know if his brother had permision, but he hasn't defended himself with that. Kathleen asked him about the ethics of what he did, and he never said, "But Donald told his brother is was ok."

According to a commenter on the Autism Diva blog, the reason gold salts work on arthritis is that they do damage to nerves.


Gold in gold salts is a neurotoxin. Now isn't that interesting?

People who know nothing about medicine have no right to go speculating on things as arcane as this.
Parents started to find sources for gold salts based on his stupid articles. When will this ridiculous behavior stop? When a child is killed.

No, apparently that doesn't do it. You are still speculating about what might cure autism instead of sticking with what is known and well proven about autism. I can't stand it. I know you are a nice person at heart, but the ridiculous mercury thinking has to stop now, before another child dies.

Kathleen Seidel said...

Ginger, a belated thanks for your detailed response to and kind words about my essay. Your account of your professional training, and your desire to fully document all aspects of the condition of someone who comes to you for help, shows how far clinical training has advanced in the fifty years that passed between Kanner’s self-education and your university education. (That is, although he had a conventional European medical education, he was self-educated in the then-fairly-new field of psychiatry.)

I look at Dr. Kanner as a man of his time, who had far less information then than we do now on which to base his speculations and conclusions about his patients. All the same, he did a better job than many of his contemporaries in avoiding holding parents morally culpable for their children’s difficulties.

Thanks especially for your kind words about the efforts of “the neurodiversity community.” It means a whole heck of a lot.

Rosemarie said...

>>>Gold in gold salts is a neurotoxin.

I'm curious where you found that information. I could find nothing online about sodium aurothiomalate being neurotoxic. Another form of "gold salts," gold chloride, is neurotoxic, but that's not the kind mentioned in the article.