What does your pediatrician know about autism treatments?
August 10, 2007 by Kristina Chew, PhD
Filed under Health
What do I do, what do I do? How I find out about what to do to help my child who has been newly diagnosed with autism? The child study team tells me about educational services, speech therapy, and OT but then I get on the internet, Google autism treatments, and I read about so many other treatments and parents themselves report that they see results—–but when I ask my child’s pediatrician, I just seem to get nods that “they’ve heard of that” but “no one really knows if that will work”……I want to help my child……….
It is hard not to think these sorts of thoughts if your child has just been diagnosed with autism and, after hearing the basic rundown of school and speech and OT services, you learn about everything else. “The Brain-Gut connection.” Special diets. Something called “chelation.” Something about a weak immune system. About fungal infections (that gut-brain thing again…..); about heavy metal toxicity (did you eat tuna while you were pregnant?); and, of course, about those vaccines.
It was eight years ago that my son Charlie was diagnosed with autism but I well remember that torrent of questions in my head, and the relief—yes, relief—at reading about so many potential answers. My son was doing intensive ABA, three sessions of speech and two of OT a week, and progress, or the kind of progress I hoped so to see (language, words, clearly spoken speech, most of all), was not coming. The numerous treatments I read about on the internet and in email discussion groups always seemed to herald results, and so hope. My son’s pediatrician raised his eyebrows and said he had heard of something like I was asking him about, but he really did not know.
Merryl A. Schechtman, M.D., Assistant Clinical Professor of Pediatrics, Albert Einstein College of Medicine, reviews many alternative treatments for young children with autism in an article in the August 2007 Pediatric Annals that is devoted to therapeutic approaches to young children with developmental disabilities. Dr. Schectman notes that
Recent studies found the use of CAM [complementary and alternative medicine] to range between 50% to 92% in the ASD population. Within the ASD population, 50% of biologically-based therapies utilized by parents involved dietary changes.
Entitled Scientifically Unsupported Therapies in the Treatment of Young Children with Autism Spectrum Disorders, Dr. Schechtman’s article reviews a number of alternative treatments for autism and provides a brief overview of the theory behind each. Besides biomedical approaches, sensory integration, auditory integration, facilitated communication, and hyperbaric oxygen therapy are discussed. Dr. Scechtman organizes some of the article as a series of questions such as a parent might ask:
- Is it viral?
- Is it bacterial?
- Is it fungal?
- Is it primary immunodeficiency?
- Is it heavy metal toxicity?
Dr. Schechtman furthers notes that complementary and alternative medicine-based treatments are “often promoted commercially” and
…..also generally lack objective, evidence-based studies to support their claims of efficacy, often relying upon unproven theories with results that are usually based upon anecdotal cases.
Commercial Web sites or publications, instead of peer-reviewed, scientific journals, are the vehicles promoting the information to the public. Therapies reaching the attention of the media may then
be sensationalized, furthering their promotion. Often pediatricians find themselves in a difficult position imposed by a parent requesting their endorsement of an unsubstantiated treatment.
Since, as Dr. Schechtman notes, so many parents of autistic children do turn to such treatments that yet to be scientifically proven, it is all the more necessary for pediatricians to be themselves informed about the treatments themselves, the rationale behind them, and why that are not yet scientifically proven:
Novel and controversial therapies will come and go, and therefore physicians should familiarize themselves with these interventions, as advice about these alternative approaches
will be sought. Discussions of nontraditional therapies should include the placebo effect, possibly undesirable, or potentially dangerous outcomes of a treatment, and the importance of scientifically sound research studies of that treatment. Addressing the use of complementary and alternative therapies in families with medically-compromised or developmentally disabled children is crucial to providing complete care to the patient and in the maintenance of a medical home.
Caveat emptor, et mater, et pater, et medicus…………….
So far none of the regular pediatricians we have seen has known much about autism. Our first pediatrician entirely missed the signs and then, when a speech therapist first used The A Word with me, told me, in indirect but not uncertain terms, that I was just a bad parent raising a bratty kid. We switched pediatricians. The second one was lovely and nurturing and a great favorite of all the sling-wearing mommies in the neighborhood, but did not understood what “PDD-NOS” meant on our files. Our third pediatrician is a nice guy, smart, takes the time to talk to us and was never patronizing about my concerns, a few years back, about vaccinating my second child. But he asks me every time I see him how “the A-B-B-A is going.” I say “actually it’s just one A. A-B-A. And we stopped doing that several years ago.” We’ve had that conversation oh, twenty times or so.
I can easily, easily understand how a frustrated and overwhelmed parent could figuratively fall into the open arms of a doctor who really listened, who seemed to know a lot about autism and various treatments, who offered hope and understanding, who did not judge. I always think of that essay that’s a take-off on Welcome To Holland. What’s it called, Welcome to Afghanistan? Anyway there is a bit in there about feeling like you are dodging bullets and not being able to find your embassy. That is how so many parents feel after this diagnosis: where’s my embassy????
Just one B. And sorry for the other errors. Typing while making suitably bland dinner for anxious child.
We have never gone the biomedical treatment route with Samuel. I never saw a link between his diet and behavior, nor did I ever see any reaction to any of his vaccines. Everything we have done so far has been either behavioral, or something like speech, OT, Music therapy. I don’t expect any “cures” from these, they are merely tools to teach Samuel and help him in his daily living. I feel bad for parents who go blindly into biomedical treatments, spend LOTS of money, expect a “cure” and don’t get one. I’ve seen it time and time again. They are always talking about the latest treatment they are trying, but I never hear about how or why they gave up on the previous treatment. I have never had a pediatrician who has been knowledgable about autism. I like my current one because he tolerates Samuel for the routine medical things and can get my 4 kids in and out of the office quickly. It works for right now.
Our regular pediatrician is morally supportive and open to discussion and followup when we discuss, but her personal experience was with “Son-Rise” and she still refers to ABA as “Lovaas” :-/.
The developmental pediatrician who was part of the diagnostic panel was, on reflection, pretty well informed and had written a journal article on controversial and non-evidenced treatments. He gave us a copy of the paper and gave us a short follow-up to discuss any questions.
There was a feeling at the time that many *experts* were quizzing us on what we planned to do. My observation at the time was that seemed to be the reverse of what I usually expected for most medical conditions.
Anecdotally, I know of pediatricians who selectively discuss what they know or what they personally like in re: treatment models. Ditto psychologists. And I know a few locals recommend non-evidenced practices…in general those are NDs and not MDs. This may be in line with the general pattern or exceptional, but I consider it disappointing since there are reviews and position papers out there.
What kind of information do pediatricians need? does anyone know what medical colleges are providing?
Hello friends -
Our ‘regular’ pediatrician has been dead nuts wrong about everything concerning Luke’s autism. First there was nothing to worry about. Go read a book about Einstein and how he didn’t talk. Lots of kids bang their heads into the wall and floor. Then the diets woudn’t help his digestion. Then his high ammonia levels could have been the result of squirming during blood extraction. There was no evidence of bacterial imbalances in autistics. There is no reason to think Luke is deficient in vitamin D. I don’t have any explanation for the rash that he developed when you started anti fungals; but I’m sure it isn’t a hexheimer style reaction.
He has gotten absolutely nothing correct. He sure can write a prescription for anti biotics though.
On the other hand, DAN doctors have consistently made accurate predictions about what was wrong with Luke, and what would help him.
Go figure.
- pD
Thank you for this post Kristina. Bink and Regan, your comments are very insightful.
Our experience has been more “Welcome to Nazi Germany” in terms of stigma and isolation.
We have had a few embassies – ambassadors for our child – in good therapists and medical doctors who look at the whole child and have open minds.
It is the ‘professionals’ with an agenda centered in money that we need to protect ourselves from.
When our child first regressed and was given the blanket label PDD-NOS in order to ‘get services’ and then I had to take S. to the dentist for the first time, I faxed over a copy of the dx to prepare the dentist. S. was very happy and cooperative, and the dentist turned to me and said urgently, ‘DO NOT LIMIT THIS CHILD!!!!!” I said of course not, we are struggling to put together a therapy program, and his reply was ‘Do not let the therapists and teachers limit him.’
This was some years ago and I often think of that when we are told what S. ‘cannot do’.
PD –
We too have had great success from various dietary changes and adding some supplements.
Oddly, we had the exact opposite experience. Our “old school” pediatrician rightly questioned the pychologist’s snap assessment and the DAN doctor we went to see charged us five hundred dollars and refused to give S. an IgG Elisa. She was the most inept, negative ‘professional’ we have come into contact with. And yet I hear wonderful things about other DAN practitioners.
This person just had issues of her own.
My ped. totally missed it. Everyone did. Told me nothing about autism or asperger’s.
The head of the dept. of psych. at a local university told parents that they used to only cover autism minimally. 2 pages in four years. Scary, isn’t it?
That has changed and the head of the dept. is now on a state board where I live.
Just as disheartening is the scarcity of coverage of the topic of autism in many college classes designed to prepare special educators…at least in the colleges around here. I’ve been a parent presenter in numerous classes and been disturced by the stereotypes being proliferated BY THE INSTRUCTORS.
Hi all,
What scares and intrigues me simultaneously, is that given I have been there, done that with my 19 year old son, nothing has changed.
Our pediatrician told us that there were “holes” in his development, and he might always be a little different, but would catch up. NOT!!!!
Well, we’ve done the ABA, Q RSTUVLMNOP…etc.
It’s still a game of trial and error, that is the constant for parents and children with autism.
Never, should we stagnate, simply try and move on.
For the past few years, I’ve taken Charlie to a general pediatrics practice with several doctors. We had appointments with many and the one we liked best is a Nurse Practitioner—-she was informed about vaccine issues, sensory needs, and was sympathetic and warm in her manner.
I’m the Aspie son of an Aspie mother, brother of an Aspie sister, father of five Aspie kids and grandfather of an Aspie granddaughter.
I also have a major in psychology and I have a knack for spotting Aspies, even online. I have a 100% success rate in identifying people who are subsequently diagnosed with ASx (not by me — I don’t practice).
The most frustrating aspect of dealing with parents of Aspie kids is the stone wall that goes up the moment I raise the fact that, in so many instances, ASx is hereditary. Talk about absolute denial… it’s as if the shutters come down. Or, more accurately, the cloak of invisibility. The possibility is steadfastly ignored. Not even acknowledged, let alone considered.
The current epidemic of autism amongst the children of parents working in Silicone Valley and other “geek” enclaves, where Aspie parents find their soulmates and reproduce with catastrophic results in their children, should be ringing bells with parents everywhere. And prompting long, hard looks in the mirror.
Is it fear? Is it disbelief? I really fail to comprehend the level of refusal to confront this reality by parents of kids with ASx.
Instead, total hope and faith is pinned in ANYTHING but the possibility that their kids got it from their parent/s. So we have the eternal quest for scapegoats, environmental causes, vaccines, etc, etc, etc.
That’s not to discount these possibilities, but for goodness sake, let’s face facts and deal with them. In my experience and observation, heredity is a major factor, and so many really obvious connections are ignored.
For example, how many neurologists, when diagnosing neurofibromatosis type 2, automatically recommend screening for austism spectrum disorders? Or vice versa?
Why do so few people wonder what the chances are of having two neuological disorders without them being in some way connected?
Yet the evidence is overwhelming: the two conditions almost go hand in hand. (Forget checking the conventional texts. Check the research sites online.)
When will we begin seeing what’s in front of our noses?
John Counsel
Very little.
Ten years ago, very few children were even dx’ed with Asperger’s. Most were put into the general file of ADHD, and treated accordingly, not by psychiatrists or psychologists, but by pediatricians without a developmental pediatric fellowship behind them.
Sadly, though there is still information now, there are still too few pediatric psychiatrists, especially in rural areas, and too few pediatricians who have taken the additional coursework to know what to do. And psychologists? Well, it’s not easy. Some just don’t have the interest or training and you really do have to search wide and far.
BTW…. nice post, John Counsel. I agree with what you’ve said.
Krs… did you know you have a banner ad from Drake Institute? Have you checked out the long term efficacy of their treatments?