On the biomedical understanding of autism
February 23, 2007 by Kristina Chew, PhD
Filed under Health
When Charlie was diagnosed with autism in the early summer of 1999, Jim and I were determined to do everything we could to help him. As this was 1999, we discovered that there was a lot that we could do. We had found out about intensive ABA (applied behavior analysis) programs from reading Let Me Hear Your Voice: A Family’s Triumph Over Autism by Catherine Maurice on the chance recommendation of the director of a daycare center in St. Paul. We were living in Minnesota at the time because I was an assistant professor of classics at the University of St. Thomas, and we checked out every autism book from the library that we could and, something more than desperate to find out any and everything we could about autism, Jim and I turned to the Internet, which we had only just started to use.
It was from the Internet that we first learned about biomedical treatments for autism: The gluten-free casein-free “special diet.” Food intolerances and leaky guts. Anti-fungal therapy. Pro-biotics. Nystatin. Supernuthera and megavitamins. Evening primrose oil. Cod liver oil. Secretin. DMG. TMG. Colostrum. Digestive enzymes. Essential fatty acids. Hyperbaric oxygen treatments. Sauna therapy. Chelation to detoxify the heavy-metal poisoned bodies of autistic children. We bought the DAN! Protocol, xeroxed it, gave it to Charlie’s pediatrician. In the next five years, we tried more than a few biomedical treatments from that list—yes, I have done business with the Great Plains Laboratory. We never did chelation. We did read what was involved and the rationale behind it, and this was enough for us not even to consider it.
We stuck to this decision even when, from the time he was 6 to 9 years old, Charlie struggled at school on every front, and more and more in his behaviors. His academic learning came completely to a halt, with the category of “minimal progress” the most frequently marked checkbox on his Progress Report. While every other child in his classroom was mainstreamed for at least part of the day, Charlie stayed in his classroom, a self-contained autism classroom. And meanwhile, children we knew who had seemed to be very similar to Charlie when they were two years old and (as he had been) non-verbal—some of these children were mainstreamed in school, could read at their grade level, could talk in full sentences.
We believed that we had made the right choices for Charlie, but it was hard not to question ourselves, especially as Charlie’s struggles in school went from worrisome to worse. Then one day Jim came home and told me something that entirely changed what I thought of biomedical treatments for autism. Jim had gone to see an old friend, a professional athlete, who had Lou Gehrig’s Disease. Jim described how his friend could no longer really talk, how glad he had been to see Jim and another friend. Then Jim said, “And then there’s this.” Jim’s friend was undergoing chelation therapy; Jim told me about meeting his friend’s doctor—a practitioner of alternative medicine—who was accompanying him.
In that moment, I realized that there is nothing specific to chelation therapy in regard to “treating” autistic children. Chelation is one among various other alternative medicine remedies meant to “detoxify” the body of heavy medals, mysterious poisonous elements which are thought to have caused a child to become autistic. I thought about the friends I knew who were creating “clean environments” in their homes, buying infrared saunas, having their fillings removed from their teeth out of fear of these containing mercury amalgams, giving their children MB12 shots and glutathione infusions; I thought about how there is nothing specific to numerous biomedical remedies that “detoxify the body” to autism.
I thought about all this again tonight. I had stopped to get something to eat on my way home from work and, just as I was finishing, some words from a woman two tables down caught my ear:
“You have to clean out the gut first.” “Integrative medicine.” “Antioxidants.”
I glanced in their direction and took my time to clean up, put on my coat, gather my things. The integrative medicine practitioner asked the other woman—who is apparently a pediatrician—to name some disease, any disease; the response was rheumatoid arthritis, and the answers posed were more than familiar to me, after so may years of reading about, wondering about, deciding against biomedical treatments for autism: “Allergies. Pro-biotics. Detoxification.”
As the years have progressed, and as Charlie has grown up, it has been his education that has proved to be most important. Seeing the changes in him thanks to good teaching by committed individuals in a carefully structured environment precisely tailored to his needs, I have been reflecting on what about those biomedical treatments seemed so compelling, especially in the chaotic blur of days that we lived in just before and after the time when Charlie was formally diagnosed with autism.
It was not even, so much, the (false) promises of “cure” and “recovery” and “healing” that were and are consistently mentioned in regard to biomedical treatments that had a certain appeal to my ears. I think, rather, that it was the re-defining—the reclassification—of autism as a “biomedical,” a “biological,” a “physiological” disease, as a medical condition that was anything but the psychogenic disorder that autism had once been seen as by self-proclaimed child development expert Bruno Bettelheim. If you can see autism as such a biomedical condition—and especially as one caused by some external, environmental factor, such as a vaccine or mercury—then you can distance your child’s autism and yourself from Bettelheim’s discredited, but insidious, theories. At least, for me, this is why I had once found the notion of autism as “biomedical disorder” so appealing and important.
I am often in contact with many parents who use biomedical remedies for their autistic children and who speak earnestly, and compelling, of the real results—the evidence—they see from giving a child certain supplements and other treatments, and their words cannot be discounted. It is rather the words and the claims of some autism organiations and of those practitioners whom families travel across the country to visit that I am less than certain about, and especially in their understanding of autism: Autism is just another name for “mercury poisoning.” Autism Spectrum Disorders are “a range of abnormal behaviors and neurologic dysfunction” whose incidence is increasing at an alarming rate in the industrialized world and is presenting a major challenge to our healthcare system” according to this center for progressive medicine.
And it is precisely in this limited understanding of autism, an understanding which does not at all take into account the numerous cultural and other factors that come into play in our understanding of what autism is, that leads me most of all to the question the biomedical definitions, and treatment, of autism.
Absolutely- it is so much simpler to blame a single cause than to try to wrap one’s head around a combination of causes. This seems to me to be a natural outcome of our “sound bite” society that doesn’t want to think deeply about anything. This also follows that autism must be described simply, too- as a “disaster” for example- rather than it being many things to many people. Of course, simplicity doesn’t live up to it’s “promise” when dealing with complex human beings, which leads to much blaming & finger-pointing (& lawsuits). As long as anyone looks to just one resource for helping people with autism, whether it be biomed or ABA, then autistic people will not be well or respectfully served.
Your points about biomed as solutions to many different conditions led me to another level of understanding of our own journey as well… I have had chronic inflammatory conditions since my teens & tried so many, many remedies. No wonder I wasn’t automatically taken in by the snake-oil claims!
I don’t trust the DAN industry, period. They look at autistic children as if they were lab rats. They are dead set on the mercury poisoning theory and instead of keeping up with mainstream research and treatments, they only look within their own circle of “alternative” practitioners. Many of those DAN doctors are autism parents who decided to take matters in their own hands because they were too desperate to wait for mainstream scientists to find a cure or an effective treatment.
They try to convince parents that they are the only ones who know about autism, and that they have the only labs that can perform the tests. I consider those labs to be so biased; if my son’s results came positive for allergies and heavy metals from one of those labs, how can I trust them? I’m having my son tested through his regular pediatrician and health insurance for food sensitivities. I enrolled in the local university’s autism study where they are looking at blood, urine and hair samples and testing for heavy metals. I will trust their results whether they come back normal or alarming.
What troubles us the most about what passes for legitimate treatment is that it never relies on teaching parents to take objective measures of their children’s behaviors to truly evaluate the efficacy of a treatments. The professionals go off of subjective feel and have the audacity to suggest their treatments improve behavior, even though behaviors are not being treated; supposed medical conditions are.
For a few months, I met with a DAN practitioner regarding testing for heavy metals etc.. Note that I said “I met” with the person in question—-when I brought Charlie once as I could not get a babysitter, the DAN practitioner seemed taken aback that I had brought him, the child under question and who she was prescribing various supplements and tests for; it was as if I was not supposed to bring him.
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I remember reading in a post recently that you did cranial sacral therapy. There was no link taking to a post so I wonder if you ever wrote about it. I will try a search as I am curious to this.
Also any info or feedback on NAET? I have the book (never read it) on say good-bye to allergy-related autism. Maybe I will read that one soon. I also have Doris Rapp’s books that I need to read. I do think the Amazon Kindle will allow me with ease to read more than one book and go back and forth with them instead of having to lug these all over the place when waiting at school and appts., etc.
In my experience as a Naturopathic doctor is that each person is an individual. Disease is a name for a group of symptoms not one single answer. If a headache or a backache can come from different reasons for each person why not any other disease. There isn’t one carved out answer for each case. Maybe we aren’t hitting the nail on the head because there are multiple heads. One thing is for sure when looking at brain problems is that there are receptor cites in the gut that compete for the same chemicals that are used in the brain. Since food primarily goes into the gut checking IgG and IgE levels of different foods in the blood can help to give us a better picture as to what is going on from inflammatory response factors that can influence brain receptors. What affects the bowel affects the brain. It is sad that most doctors don’t check IgG levels of food because in my practice that seems to be the biggest culprit for most disease problems. It’s inflammation that can interfere with the many processes that the body does. What is causing the inflammation is at question. Keep searching your case is unique . This is my gut feeling. Simple home test kits are available to check for IgG blood levels. http://www.beyondhealthtowellness.com
I have never understood the black and white approach that most people take to biomedical treatments for autism. It seems that recognizing some treatments are based on bad science immediately discredits any other approach that integrates the health of the body and the health of the brain. That is not a smart approach.
I have seen people with such rigid and extreme views on biomedical tratements that they could not recognize the value of something as standard as Omega-3 fatty acid supplements for their children. That is a mistake. I wish people would carefully research each approach and cautiously try the ones that are not potentially dangerous (i.e., chelation) and try to measure any progress objectively. Fish oil objectively enhances brain development. L-Carnosine and zinc has been demonstrated to improve language in autistic children in a double-blind, placebo controlled study done by a leading neurologist. There are positive scientific studies on Vitamin C and Vitamin B6. Etc. There is a difference between being smart and careful and being closed-minded.
Thanks; could you provide the references for those studies?
Thank you for asking. I hope it was a sincere inquiry rather than a sarcastic insinuation that the science must not exist. Dr. Michael Chez, the Neurologist who authored the first study is a world-renowned Neurologist. He is currently using steroid treatments for autism and is studying the properties of curcumin, an ingredient in tumeric known for its natual anti-inflammatory properties.
Chez, Michael G. (2002) “Double-Blind, Placebo-Controlled Study of L-Carnosine Supplementation in Children With Autistic Spectrum Disorders.”
[u]Journal of Child Neurology[/u], Vol. 17, No. 11, 833-837.
Amminger, Paul G. et al. (2007) “Omega-3 Fatty Acids Supplementation in Children with Autism: A Double-blind Randomized, Placebo-controlled Pilot Study.” [u] Biological Psychiatry [/u] Vol. 61, Issue 4. p 551-553.
(one vitamin C/antioxidant study)
Ming, X et al. (2005) “Increased Excretion of a Lipid Peroxidation Biomarker in Autism.” Prostaglandins, Leukotrienes and Essential Fatty Acids, Volume 73, p.379-384
Martinaeu, J. et al. (1985) “Vitamin B6, magnesium, and combined B6-Mg: therapeutic effects in childhood autism”. [u]Biological Psychiatry.[/u] 20(5):467-78
Here is a list of all studies positive and negative on B6: http://www.autismwebsite.com/aRI/treatment/b6studies.htm
Here is another fact you may be unaware of: the Feingold Diet works for hyperactivity. Science has demonstrated it. For 30 years pediatricians have told parents that the Feingold diet does not work, and for 30 years they have been wrong. And not just wrong- wrong without reason. Simply prejudiced to the idea that the Feingold diet could work, and so dismissive of the idea with no evidence.
Go to ScienceDaily.com and search for this article, “A Trial of Removing Food Additives Should be Considered for Hyperactive Children, Experts Say”. It will link you to all of the science on this issue.
We all assume that because the scientific method is objective the reporting and public consumption of news related to science is objective. It is not. It is politicized. The real scientific environment is much more “alternative” then most people realize, because science requires an open mind. The general pediatrician is far removed from scientific trends. It takes time for new information to be assimilated by the medical establishment. It also take funding for research to be done. The public good does not always prevail in issues of research funding.
Thanks much; I’ve been following the information provided by the Autism Research Institute since my son was diagnosed in 1999—-have tried, as I wrote, a number of biomedical treatments and, while seeing immediate results, have not found these to last. My son isn’t hyperactive and has a bit of an unusual diet for an 11-year-old American boy—-lots of vegetables, fruits, sushi, no junk food with the exception of McDonalds (which he turned down the last time we asked him about it), carbs, more. (Actually, our household has anything but a “typical American diet.”)
My main concern about biomedical and “alternative” treatments is that parents sometimes put a bit too much store in them, and the results seem to vary, just as different educational approaches work for different children.
Yes; and your experience reflects the overall experience that medicine has had in its attempts to treat all neuropsychiatric disorders. Inconsistency. There is no magic bullet for any neuropyschiatric disorder. The same inconsistent results have been found treating schizophrenic patients with anti-psychotics and depressives with anti-depressives, and epileptics with anti-seizure medication.
Our knowledge of the brian is limited, but luckily, growing by leaps and bounds. I hope that one day in my lifetime I will see more effective and reliable treatments for brain disorders.
@M, Fortunately, educational programs have proved very effective for my son, who’s doing fabulous. Very best—–