A Potential Much Brighter Than Our Fears · 2005-08-24 20:45

I recently read a weblog entry by a mother outraged at the late Dr. Leo Kanner for his supposed failure to investigate all possible sources of the autism displayed by one of his early patients, “Donald T.” This outrage was provoked by recent installments in Dan Olmsted’s series, The Age of Autism. In my previous articles, Autistic Objects of Curiosity and Involuntary Disclosure I criticize Mr. Olmsted’s use of paparazzi tactics to obtain personal information about Dr. Kanner’s former patient.

This morning I converted Dr. Kanner’s 30-year follow-up article to .html format. At 77k, it’s a much more reasonable download than the 1.3 megabyte image pdf that heretofore has been the only version available on this site. Those who take the time to read this article may well come away with a very different impression of Dr. Kanner than that fostered by Dan Olmsted, who seems intent on characterizing him as a heartless parent-basher, not significantly different from the notorious Bruno Bettelheim. The following thoughts are a slightly revised version of a comment that I left on this mother’s weblog today.

In his eagerness to promote the theory that biomedical treatments can not only relieve certain physical ailments, and improve the health of autistic people, but can also “cure autism,” Dan Olmsted has offered a distorted interpretation of Donald T’s story and Dr. Leo Kanner’s original articles, and has thereby needlessly contributed to the amplification of rage and distress experienced by parents of autistic children who are convinced that their children have been damaged by vaccines.

We have no way of knowing exactly what specific memories the younger Mr. T reported to Olmsted, which Olmsted then recounted as matters of medical fact, or how he arrived at his belief that gold salts not only helped to improve the symptoms of his brother’s rheumatoid arthritis, but also cured him of his autism. We are offered no clues about how much Donald T’s brother really knows about autism, besides assuming that it’s something that his brother “used to have.” Olmsted’s articles suggest that the younger brother has recounted not his own memories, but memories of what was told to him by his now-deceased parents.

By reading Kanner’s 1971 follow-up study, we can determine that Donald T’s brother was seven years old when his brother was twelve, the time the first treatment with gold salts occurred. We can determine that the brothers lived in separate homes from 1942 to 1946, the years when Donald T lived on a farm with friends of the family. We can determine that Donald T experienced a worsening of his arthritis at the age of 22. We can also determine that, at the age of 36, his mother described her oldest son as “not completely normal,” at the same time affirming that he had succeeded in “tak(ing) his place in society very well, so much better than we ever hoped for.” She also spoke highly of the couple with whom her son lived for four years.

One can only guess how reliable the memories might be of someone who is 67 years old, recalling incidents that occurred sixty years before, involving a cognitively-different older brother with significant health and behavioral problems who lived in another household for four years—from the time the older brother was nine until he was thirteen, and from the time the younger brother was four until he was eight. Dr. Kanner visited the farm in 1945, when Donald T was twelve, the same year he received the gold salts treatment. The “miraculous recovery” described by the younger brother occurred while the older brother was not living at home.

Both memory and sibling relationships can be complex and troubled. The willingness of anyone to reveal intimate details to a reporter about an adult sibling’s life and medical history, apparently without that sibling’s consent, could indicate difficulties that have persisted into adulthood, extreme naivete, an assumption of superiority, or thoughtless indiscretion.

In Gold, Olmsted states,

the child psychiatrist who diagnosed those cases attributed Donald’s remarkable success in life… to four years he lived with a ‘wise, intuitive’ farm couple.

Although Kanner did attribute a great deal of positive influence to that couple, who “knew how to make him utilize his futile preoccupations for practical purposes,” he goes on to state that they “helped him to maintain contact with his family,” as contrasted to other patients, for whom “State Hospital admission was tantamount to a life sentence.”

It is tremendously unfair of Olmsted to suggest that Dr. Kanner’s recommendations were born solely out of mistrust of the parents’ competence to care for their son, and a desire to separate them. Kanner was not disrespecting Donald T’s parents, but acknowledging the positive effect of directing a child’s energies in a way that enables that child to engage with the concrete, natural world and maintain nourishing human relationships.

Dr. Kanner first saw Donald T in 1938. Olmsted reports the younger brother’s second-hand recollection of Kanner’s suggestion, and his parents’ response, as:

the best thing that could happen would be to place Donald with another family—a childless farm couple. The parents complied…

If one doesn’t closely scrutinize the time-line of events, one might assume that the parents promptly capitulated to the demand of a cold-hearted doctor that their son be wrested from their custody. In fact, the parents didn’t out-place him until four years later. Given the long lapse of time, one cannot necessarily assume that the decision to place their son with a couple they knew and trusted was a passive parental assent to an overbearing doctor’s dictates. Rather, after a period of escalating “nervousness and excitability” that could have been very trying for the parents, they chose to send their son to stay for a few years with friends in the country, where life moves a little more slowly and is more focused on concrete matters. He kept in touch with his family, his family probably got some needed respite, and he ended up returning to his home and living with them until their death.

Also unfair is Olmsted’s implication in “March of the Experts,” contained in the following passage:

“One other fact stands out prominently,” wrote Leo Kanner, the child psychiatrist who first identified autism, beginning with Donald T., 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…

Contrary to Olmsted’s suggestion that Kanner looked favorably upon the theories espoused by Bettelheim, in his 1971 follow-up, Kanner writes of his patients:

As for the all-important matter of etiology, the early development of the eleven children left no other choice than the assumption that they had ‘come into the world with an innate disability to form the usual, biologically provided contact with people.’ The concluding sentence of the 1943 article said, ‘here we seem to have pure-culture examples of inborn autistic disturbances of affective contact.’ One can say now unhesitatingly that this assumption has become a certainty. Some people seem to have completely overlooked this statement, however, as well as the passages leading up to it and have referred to the author erroneously as an advocate of postnatal ‘psychogenicity.’

It was noticed that many of the parents, grandparents, and collaterals were persons strongly preoccupied with abstractions of a scientific, literary, or artistic nature and limited in genuine interest in people. But at no time was this undeniable and repeatedly confirmed phenomenon oversimplified as warranting the postulate of a direct cause-and-effect connection. To the contrary, it was stated expressly that the aloneness from the beginning of life makes it difficult to attribute the whole picture one-sidedly to the manner of early parent-child relationship.

He also spoke of positive developments in the field of autism, most notably that,

Parents are beginning to be dealt with from the point of view of mutuality, rather than as people standing at one end of a parent-child bipolarity; they have of late been included in the therapeutic efforts, not as etiological culprits, nor merely as recipients of drug prescriptions and of thou-shalt and thou-shalt-not rules, but as actively contributing cotherapists.

Although Dr. Kanner was not omniscient (what human is?), there is no need to rage at him. Rather, the story he told of his patient, Donald T, should reassure parents that our autistic children have potential much brighter than our fears.

Comments


  1. I exchanged correspondence with Dan Olmsted when he started his autism series. In response to my citation of various materials for him to look at, he told me that he wanted instead to take a fresh look at things, and not be influenced by ideas that others had before him. In other words, he prefers to draw his conclusions in a vacuum, without doing any research.

    Now Olmsted is suggesting that gold salts act as a chelating agent for mercury, thereby curing autism. Had he done even the most cursory research he would have found that gold is well known to accumulate in tissues, that it has toxic properties, and that gold poisoning is treated by chelation.

    I suppose that shooting from the hip is a journalist’s prerogative, and Olmsted is obviously having a great time with this autism series, but people are taking his conclusions far too seriously. In light of this week’s chelation-related death of Abubakar Nadama in Pennsylvania, I hope Olmsted will give serious thought to acting more responsibly in his reporting. — Anne    2005-08-25 14:08    #

  2. Outraged mother Ginger here. Please allow me a little further defense of my anger at Leo Kanner and a little of my own perspective on Dan Olmstead’s reporting.

    In her above piece, Ann 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 grant 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.

    Ann 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 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. — Ginger Taylor    2005-08-27 00:18    #

  3. I had begun to make a comment on Ann’s comment above, but edited it. Apparently Ann’s name remained in two places where I meant to write Kathleen’s name in.

    So sorry for the confusion! — Ginger Taylor    2005-08-27 00:27    #

  4. Uh, Ginger, Leo Kanner has been dead for 24 years. I don’t think that he’s terribly concerned whether you are angry at him or not.

    Also, his follow-up article was written in 1971, when he was 77 years old. Donald’s rheumatoid arthritis crisis was in 1947 – 24 years previous to the paper. Is it possible that Leo Kanner forgot about it – or that he never knew?

    The letter from Donald’s mother, which Kanner cites in his paper, only mentions an acute attack in 1955, well after Donald’s improvement. It may be that she didn’t think to tell Kanner the whole story. And I’m sure that Kanner wasn’t closely monitoring Donald’s case – especially after he went to live on the farm.

    I’m not trying to excuse Kanner – he made a lot of mistakes, including ignoring the “typical” children in a family when he attributed autism to “maternal coldness” – but I’m still puzzled by the anger directed at his corpse.

    I also find it odd that people who claim that mercury causes autism could think that another nurotoxic heavy metal – gold – could possibly be the “cure”. I shudder to think what the toll of this hypothesis will be.

    Before launching on another Crusade to promote aurothiomalate or auranofin as treatment for autism, perhaps we ought to find out if any other autistic children have received one of these drugs? They are used in Juvenile Rheumatoid Arthritis, so there must be a few other cases.

    Or do we leap before we look?

    Prometheus. — Prometheus    2005-09-03 22:02    #

  5. Thanks to everyone for your comments. Anne, I agree wholeheartedly that many parents appear to be taking Olmsted’s articles too seriously. It would be one thing if his conclusions were preceded by a disciplined study of autism, genetics, toxicology, or any other relevant discipline, but it seems that he is content to offer his journalist’s speculations—often informed by anonymous sources—as if they were supported by a solid background in science, which they are not.

    Ginger, I’m grateful that you’ve taken the time to explain in such detail your reasons for feeling the way you do about Kanner. 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.

    Personally, I cannot hold Dr. Kanner at fault in this instance. He was a man of his time, had far less information on which to base his speculations and conclusions about his patients, but all the same, did a better job than many of his contemporaries in avoiding holding parents morally culpable for their children’s difficulties.

    Thanks for your kind words about the piece, and also about the efforts of “the neurodiversity community.” It means a lot coming from someone who could just as easily cast people with a perspective like my own as “the enemy.”

    Prometheus, I share your concern about the possibility that parents might “leap before they look” too closely at the potential drawbacks of gold as a treatment option. As Anne pointed out, it is toxic, after all! Professor Boyd Haley has made some noises in subsequent Olmsted articles about plans to experiment with gold as a chelator; let’s see if he manages to get those plans past an Institutional Review Board.

    BTW, someone wrote the other day with a few interesting facts: “Whether or not the gold salts helped Donald with his autistic behaviors, they surely depleted his glutathione like no non-lethal dose of mercury ever could. Gold given as crysotherapy is found as a complex of glutathione and typical monthly doses are 1 gram of metal. Compare that to 25 micrograms of mercury. Sure puts a dent in the whole Jill James theory. BTW, The product that may have helped Donald T with his arthritis was most likely made by the evil Merck and company.” — Kathleen Seidel    2005-09-04 19:18    #