Saturday, November 22, 2008

DAN! Doctors are NOT "Autism Experts"!

I started writing this post last April. I have a lot of unfinished posts, thanks to my spirited 3 year old! I wrote most of it before reading Dr. Michael Chez's excellent book "Autism and It's Medical Management". I decided to quote a paragraph from his book, as noted, because I couldn't improve on perfection! Much of my description of the "experts" educations are very similar to Dr. Chez's descriptions because they are the same viewpoints of people who are in medicine and have gone through residency training. And great minds think alike! Without further ado...

It drives me nuts to keep hearing DAN doctors referred to as "autism experts". They are self-appointed "autism experts" and in no way considered as experts on ASD medical management by the medical community.

So who is an "autism expert" that is regarded as such by the medical community? It occurs to me that just because people watch "ER" or "Grey's Anatomy", they still really have no concept of what happens in Medical School and Residency and Fellowship training. In fact, in my field of OB/GYN, I still hear about midwives being equated with OB/GYNs, as if there is no real difference in their training and functioning other than the OB/GYN can wield a scalpel, usually referring to over-eagerness to "cut" in a reckless manner. You cannot compare two years of midwifery school after college to four years of medical school and four years of OB/GYN residency training with board certification.

Understanding the training that various specialists undergo is important to help understand the depth and breadth of knowledge they have. I am speaking of physicians or doctors of osteopathy, who all go to medical school. So all start out with four years of medical school, then they go on to residency training.

Developmental pediatricians first go to residency in general pediatrics for three years, then they sub-specialize in a developmental pediatric specialty program that emphasizes developmental and behavioral delays, as well as learning disabilities, for another two years. There is board certification in this sub-specialty and in general pediatrics that they can take to demonstrate their competency in these areas.

Pediatric Neurologists first go to residency in general pediatrics for three years, then they sub-specialize in neurology for another three years. They are then eligible for board certification in both pediatrics and in child neurology.

Child psychiatrists first have a year of general medicine or pediatric training (also called an internship), then do a three-year psychiatry residency and then another year of sub-specialization in child psychiatry. Their emphasis is on psychiatric conditions and behavioral conditions. Some will have more of an interest in autism, and thus will have a better understanding of it.

General pediatricians are trained for three years in pediatrics and may have some neurological training, and even some minimal autism training. They can provide medical care for general pediatric illnesses and make appropriate referrals for medical or psychological testing. They are not considered as trained experts for autism as in the above specialties. They are eligible for general pediatric boards.

Board certification is very important as it shows competence in the areas of residency training and specialty training to a certain high level standard. You have to have taken the actual residency training in a particular area in order to take the corresponding board certification test.

There are no standard medical boards or specific training requirements for "autism specialists". Most come from one of the first three categories listed above. It isn't always easy to find them, I have had some bad experiences with some who are not very knowledgeable about autism and are not interested in learning more about it. I get recommendations from other parents and I interviewed various specialists until we found our present "team" who all work together for my son's health and welfare.

Now we come to DAN doctors. They are generally in the primary care area, like pediatrics or family medicine, although there are some specialists, like an OB/GYN I have knowledge of, and an ENT I have knowledge of, who have then taken a weekend course on the "DAN protocol" and can then hang out a shingle as a "DAN doctor". There is, of course, no board certification process to ensure a proper training and high level of knowledge/practice in this, because there is no residency/specialty program for DAN doctors. Thus, they are self-proclaimed autism specialists.

So, who is the true expert in the medical management of autism? Someone who has taken three years of training in a general residency and an additional 2-3 years of specialized training and has achieved a high level of competence that is demonstrated by board certifications, or someone who has taken a three year general residency with a weekend course that is not eligible for board certification because there isn't any board to certify them for autism medical treatment?

I have gotten to know a lot of the true experts in the medical management of autism over the years. They are all dedicated to treating children with autism. The difference is that they are highly trained and are dedicated to high standards of medical care that have been proven effective through testing with good scientific protocols.

"It is important in the face of the crisis of having an autistic child that parents remain grounded and not accept at face value the testimonials of these types of practitioners (pseudo-autism specialists) and the hype they sell. Even if some of these practitioners have good intentions, they are often misled themselves. Parents must arm themselves to ask appropriate questions and be skeptical of anyone offering to cure autism, or actively marketing themselves as autism specialists." ("Autism and it's Medical Management: A Guide for Parents and Professionals" by Dr. Michael Chez, M.D., page 121)

Addendum:

Board certification is different for every specialty and sub-specialty. They each have their own organization, like mine is the American Board of OB/GYNs, and that is the only one I can receive board certification in. A physician must have residency training and Fellowship/Sub-specialty training first before they can apply for their particular board certification, and they must practice for one to two years before they can take the written and oral boards.

So, the true autism experts will have board certification in Pediatric Neurology, or in Neuro-developmental Disabilities , or in Child Psychiatry. It is important to know what the doctor is board certified in. A board certification in Pediatrics or Family Practice does not certify a doctor in the medical management of Autism. Certainly, the two doctors I know of, one in OB/GYN/Genetics and the other in ENT, have absolutely NO training at all in autism, and have no right to call themselves "autism experts".

So make sure you know what their board certification is. If they are not Board Certified in one of the three approved training programs, they are then "self-appointed" autism experts. An interest in autism and a few weekend DAN meetings do not an expert make.

DAN DOCTORS ARE NOT AUTISM EXPERTS!

17 comments:

Bonnie said...

Hi, I truly hope that a lot of people read your blog on this subject. I have to confess that I am currently seeing a pediatrician who claims to be a DAN doctor, and is running a Integrative Medicine Practice. And quite frankly he sucks. The only benefit I get from going to him is that we wanted to try out son on b-12 in jections and needing a prescription, we went to him because our insurance covers our visits with him. I know this sounds lame, but our son is pretty high functioning with some issues. We went to an excellent DAN Doctor, Dr. Phil Demio in Ohio, but unfortunately could not see ourselves continuing because our initial visit was around $900, and that included supplements and consultation. But there was no way we could continue seeing him because he doesn't take insurances. Now, in all fairness, you can turn your paperwork from him into your carrier and see if they will cover any of it. In our case, they didn't . That was a while back so I sought out this other guy. He's almost on the level of a quake, and I really really know he is no expert, so I am just gaining knowledge as I go and using him for his prescription writing skills!

Prometheus said...

Storkdoc,

Most DAN! doctors seem to come from the bottom tiers of their specialties (or lack of specialty). There are exceptions, of course, but the doctors currently holding the limelight in the DAN! world have - for the most part - never completed a residency (although a few of them have done a few years before quitting).

The DAN! label seems to be more of a marketing ploy than anything else. It's like those weekend seminars on stock trading that let people bill themselves as "financial counselors".

From the DAN! doctors I've met, corresponded with or heard about, I'd say that the DAN! label is rather the inverse of a "seal of approval". If the doctor you are considering has the DAN! label, they may be worse than a practitioner with similar training and experience who isn't a "certified DAN! practitioner".

Just look for the DAN! label - it's a sign of quality! (just not a sign of good quality)

[Note: I'm sure that there are a number of excellent doctors who have gone to the DAN! seminars and gotten the "DAN! certification". However, the inclusion of a few "good apples" does not improve the quality of the rest of the barrel. Those "good" doctors are being tarred - unfairly perhaps - with the same brush as the rest of the DAN! docs, but that's what happens when you associate with a dodgy crowd.]

Prometheus

David N. Andrews MEd (Distinction) said...

Not all DAN practitioners are medical practitioners. They have an eight-hour 'training programme' and then are let loose on the public.

Compare that to the training required in the UK to be seen as competent in any given area of practice: 5-6yrs at medical school (MB, ChB - or similarly named - degrees), then three years' full-time-equivalent loggable practice time in your chosen specialty (rarely accumulated in one three year stint, and completed whilst undertaking private study in that specialty for the appropriate Royal College Membership qualification)... and then...

My aunt's an MB, BS, MRCOG (in other words, an obstetrician/gynaecologist), which is how I know this. And this is a quicker route than the US one, in which medical training is done postgraduate (if I understand the system there correctly)...

In other words: eight hours does not a competent practitioner make... anywhere.

storkdok said...

Thank you, David! And Prometheus! I included only the practitioners who could legally treat patients as physicians/DOs, the other "practioners are not worth mentioning, as they are not licensed to practice medicine.

I wrote this article because so many mothers on the Cafemom website, more than 10,000 in the autism group, don't have a clue as to what DAN! means, and that these practitioners are lying about their "expertise" in autism medical management. Many people outside of the medical system don't understand the training involved in medicine and residency and why it is important.

EdR77203 said...

Storkdok,

You are in the medical community and yet to get help for your son, you go to the schools. Medicine is woefully primative when it comes to autism. This is why DAN exists.
ABA, OT, ST and all of the other treatments that are out there will only take your son so far. After that he will plateau. If there is a breakthrough to be had in autism is has to be medical. But the medical community is so wrapped up in the vaccine controversy that they will never find a treatment in our lifetime other than the drugs that they use to manage people with psychiatric illnesses. If your son is to see a medical breakthrough you will have to find it yourself.

Dr Benway said...

Minor correction for child psychiatry: it's a two-year post-residency fellowship, as far as I am aware.

storkdok said...

Dr. Benway,

Thank you for your comment! I asked a classmate of ours who is a child psychiatrist, and she gave me the information for that part of my post. I have noticed that different sub-specialties sometimes have a year difference in how long they study, some developmental pediatricians have 2 years, some 3 years fellowship. Our developmental pediatrician says some programs have more neurology in them.

I know in my area one can sub-specialize in Urogynecology for one or two years after OB/GYN residency. Depends upon the program, but most are going to two years since the actual sub-specialty Boards were developed.

storkdok said...

Dr. Benway,

I have found this information on the website of the American Academy of Child and Adolescent Psychiatry:

Traditional Training Programs - Residents complete five total years of training: three years of general psychiatry residency training (including internship), plus two years of child and adolescent psychiatry specialty training.


Integrated Training Programs - Residents complete five years of training in general psychiatry and child and adolescent psychiatry at the same time.

Triple Board Programs - Residents complete five years of training that combines pediatrics, general psychiatry, and child and adolescent psychiatry training in a single integrated experience.

storkdok said...

Ed, I do appreciate your comments.

First, even though I and my husband are physicians, we have had our fair share of being blown off by the medical establishment. This happened early on, when we were seeking a diagnosis, my partner, our pediatrician, just completely blew me off when I asked why my son wasn't speaking and didn't do things like other kids. I was also blown off by a prominent pediatric GI doctor in our state, the head of the department at our referral center, who attributed my son's severe diarrhea and pain to autism because he could not speak and tell us how he felt. We subsequently saw Dr. Buie at Mass General, who scoped him and found nonspecific inflammatory bowel disease and gastritis, quite severe on the biopsies. The treatment for IBD has resolved the pain and diarrhea, but unless we had persisted, he would probably still be having the symptoms. I don't believe his IBD has a connection to his autism, the literature doesn't support one, I just think he happens to have it.

DAN! does not exist because medicine has nothing to offer. It exists because parents want to believe non-evidence based pseudoscience instead of accepting their child has a neurological disorder that is genetic. They would rather believe an unsubstantiated theory than to accept that we don't have the specific genes identified, although the weight of evidence points to the vast majority of cases as having a genetic cause.

My son is continuing to learn every day, he has come a long ways. I have no doubt he will continue to learn with the educational supports and therapies he receives. I recognize we are very lucky that our son speaks well and is mainstreamed in 2nd grade. I don't know exactly why he is doing so well other than he has the potential and we have found the ways to help him learn very effectively. Every child is different in how they may respond to the educational therapies and the ST, PT, and OT. We are very lucky.

Say we tried the biomedical route with our son, I doubt he would be progressing more, and he might not have progressed as much if he had been subjected to endless poking and prodding and IVs, which I am sure would induce much anxiety. But many kids are like my son, and their parents trumpet to the world that they have progressed because of biomedical therapies. How would they know?

I love my son too much to experiment on him. I don't hate autism, I don't need to cure him, he is what he is, a unique wonderful kid. I have no idea how independent he may become, or how long it might take, or what future issues may come up, I kind of dread adolescence, but so do many parents.

Autistic kids do learn, they aren't static. Some can learn more than others, probably the result of the combination of genes involved in their autism.

Ed, it is not the scientific and medical community that is keeping the vaccine causes autism hypothesis alive, it is the pseudoscientists, DAN! doctors and pseudojournalists who keep it going. It is well known in the medical community, in the conferences I attend, real medical conferences, that genetics is where the answer is. I mean this in all sincerity, vaccines are a non-issue in science and medicine. I'm not trying to be mean, just evidence-based, as that is what will truly help my son and the other autistics in the future.

There is a lot of research going on that you don't hear about day to day. That is the nature of research. It takes time. The medical community takes autism very seriously. The physicians know much more about it than they did over 6 years ago when my son was diagnosed. We visit our neurologist and developmental pediatrician (each one) about 4 times minimum a year. Our developmental pediatrician is coming to our IEP on the 9th, because the school is refusing to let her do an observation of my son during his unscheduled times (recess). She is advocating for a social program that the school has failed to even allow me to discuss at the IEPs. She has taken a lot of time, and so has our neurologist, to write letters and their offices have copied his entire chart for my fight with DHHS, who wants to say my son doesn't have autism. My son has real advocates in these two wonderful doctors.

Marcia said...

I am so glad that I found your blog. My daughter is 5 (we adopted her from China when she was 3 1/2). She has been diagnosed with dspyraxia and verbal apraxia which many parents seem to try and treat with similar therapies mentioned in the DAN protocol. I am a clinical pharmacist and have always been a big believer in evidenced based medicine and I was coming up with dead ends when researching all of the biomedical treatments that I was hearing about. This is all relatively new to me since we have only had the diagnosis for about 6 months and, like all parents, we want to do everything we can to make sure my daughter is getting the best treatment. It seems that every mother I meet in my daughter's therapy office takes their child to a DAN doctor and talks about how much all of these treatments have made a difference. I was beginning to doubt myself (and my daughter's wonderful developmental pediatrician) and wonder if I should be trying some of these options. I so appreciate your insight. Thank you! Marcia

Virtual Czarina said...

Not all DAN doctors are shysters.

I think that like any doctor you cannot just go on whether they are a DAN doctor or not. You have to get a quality recommendation for your referral.

I am seeking a DAN doctor because both my children have mild sensory issues and the regular community thinks they are within "normal." I love them too much to not try everything I can for them to be able to do better for themselves. At the end of the day the "experimentation" is vitamins, diet and therapy. If it doesn't work, I can't imagine how it will hurt.

storkdok said...

@Virtual Czarina

In my post I explained who the real autism experts are. Anyone using the DAN title is a self-proclaimed expert, not recognized by the medical profession as an expert on autism. You should be honest (to yourself) and say that you prefer to see someone who is not an expert in autism.

Perhaps you would like to consult with Dr. Roy Kerry. He is the DAN doctor who killed Abubakar Tariq Nadama, a 5 year old with autism. Yes, DAN doctors and the DAN protocol can harm and even kill children.

Squillo said...

As you said, Storkdoc, it isn't that that mainstream medicine "is primitive" when confronting autism that drives people to DAN! practitioners; it's that competent medical professionals are willing to admit when they don't have an answer. DAN! practitioners often offer "the" answer (or a whole slew of them, which is understandably much more comforting to parents than what they hear from the real autism experts.

Moreover, and unfortunately, all the extra training and experience that real experts have doesn't guarantee that they are good doctors (or communicators). Through my work, I've encountered plenty of well-respected physician-experts in a variety of fields that I wouldn't let near a family member. That doesn't make lack of training a virtue, however.

franco said...

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Our Family Is His said...

Define expert. You go to school longer so you are an expert? Or, could it be some of those who spend more of their waking hours studying Autism than the common MD, studying what the body is doing on a cellular level, and going to conference after conference after conference? Yes, there are some quacks that carry the label DAN. I have met them personally. But there are some incredible doctors out there making a difference in the life of some children. I would be more than happy to share our medical records with you (since you want actual evidence) and you can see, from a medical perspective, what biomedical treatments can do in some children. Don't write off DAN just because they do things differently. Some are far more qualified than your idea of an "expert" to help a family with children on the spectrum. It takes a spectrum of doctors to help a spectrum of children.

Agnes said...

Hello,
I noticed that you are attempting to medically manage your child's autism, yet in responding to Ed you confidentally proclaim autism as a genetic disorder, as if untreatable. The latest CDC Stats show a prevalence/increase and scientists know that there is no such thing as a Genetic Epidemic. 1in 88 is an epidemic. The mainstream medical community now even admits that it cannot have a solely genetic cause. Research needs to conducted elsewhere. Really I find it odd that people trained in a science based field are so reluctant to face the fact that toxic exposure can cause damage and wreak havoc on our chemistry.. We are bombarded with more and more all the time. I know research takes time, but the medical community needs to get their heads out of the sand and stop concentrating on genetics. I know several Universities are now researching environmental factors. Hopefully more follow their example.