Monday, November 17, 2008

A Parenting Seminar, Ensuing Detective Work, and a Rant

We are lucky to live in a city with a preeminent autism research center, called TRIAD, Treatment and Research Institute for Autism Spectrum Disorders, attached to Vanderbilt University but privately funded. They put on FREE monthly seminars called "Family First," which are designed to help families cope with common stressors of parenting a child on the autistic spectrum. Wonderful Husband and I attended one Saturday, and it was AWESOME.

This post is not about that awesome seminar. It's about a brush with a True Believer.

Let me start at the beginning, though. There was a great orientation wherein "What is autism?" was addressed. Topics in the orientation were "Understanding ASDs, understanding your child [as an individual person with specific likes and dislikes], prioritizing goals [for behavior, development, and family dynamics], and understanding the characteristics of effective interventions." [emphasis mine]

That last one was very important and well-stated. One thing I loved was that they SPECIFICALLY addressed the vaccines issue, stating unequivocally that "There is no current established scientific link to proposed causes [of autism] such as vaccines, diet, or toxin/environmental exposure." Likewise, they clearly spelled out that "CAM therapies lack scientific evidence supporting their effectiveness in treating the symptoms and conditions for which they are used." And my favorite, "If you decide to try an alternative treatment: Do not take your child out of evidence-based interventions to pay for unproven treatments; consult with your child's pediatrician; become familiar with the scientific method for evaluating the effectiveness of treatments." (That was credited to Stone, W. & DiGeronimo, T. (2006). Does my child have autism?: A parent's guide to early detection and intervention in autism spectrum disorders.)

It was really great they said that and put it in black and white in the orientation materials for parents to peruse at home. Because during the lunch break, I overheard two parents discussing biomedical interventions-- the casein-gluten-free diet, and allergy testing, to be exact. My brain started paying attention to their conversation just in time to hear Parent A mention her "DAN! doctor." Crap, I thought-- isn't that a Jenny McCarthy-related acronym? I couldn't remember, but since the term "DAN!" raised my hackles, I decided to make notes and look stuff up later.

Parent A talked about getting her child allergy-tested through urine and blood samples. "Why should I go back and get the scratch test done when he's older when they can test his fluids now? It's just going to cause him more pain and discomfort!" Parent A was extremely emphatic that Parents B and C get their child's allergy tests done only by one Great Plains Labs. This raised a red flag with me, because I read a lot of Ben Goldacre's "Bad Science" columns in the UK Guardian, and I remember the story where the UK media was in a tizzy over MRSA in hospitals... only it turned out the reporters were ALL sending their samples to this ONE lab, which never failed to turn up a positive-- and therefore paper-selling-- result. Turns out the lab was run out of a garden shed by one guy with an unaccredited correspondence-course PhD. Any insistence on the use of ONLY one specific lab is highly suggestive of tainted results.

WH and I kept shooting each other Significant Looks across the table, so I knew he had the same feeling I did about Parent A's dubious advice.

We got home, and I looked it up. Sure enough, the DAN! acronym stands for Defeat Autism Now! and their slogan is "Autism is Treatable!" HOOOO boy. Now I remember them! From their website, the so-called Autism Research Institute:
As you have read in the many media reports of the so-called "Autism Summit," (a meeting in Washington DC in late November, 2003), the Federal Government and several multi-million dollar autism groups hope to be "finding effective drugs for the symptoms of autism" in 7 to 10 years.

NONSENSE! We need to tell them, and the media, and the tens of thousands of families of autistic children who don't know, that many effective treatments are available NOW. If your child has recovered from autism, or improved dramatically, and you would be willing to speak to the media about your child's recovery, YOUR HELP IS NEEDED. The Autism Research Institute has begun compiling an extensive list of families throughout the United States who are willing to talk to the media about their child's recovery. (read full letter and fill out form)

This is bull. Autism is a GENETIC, NEUROLOGICAL CONDITION. You don't "recover" from it! It's something you ARE. Parents of children with ASD are HARMING their kids by subscribing to this "my child needs to be fixed" mentality! Gahh...

I will put this side-by-side with the advice from Stone and DiGeronimo, 2006, thankfully put into our orientation materials by TRIAD, just to make a point:
'Red Flags' for Evaluating Interventions
Be wary if an intervention...
- Offers a cure for autism
- Promises to be effective for all children
- Claims to improve all of the symptoms of autism
- Requires you to suspend your belief system
- Does not provide routine and periodic assessments of your child's progress and the treatment's effectiveness
- Consists of a general "package" or predetermined curriculum that is not tailored to your child's individual needs
- Claims to be the "best" or "only" treatment for your child
I have perused the ARI/DAN! website and found all of these flags, fluttering merrily. To these I would add, "Uses celebrity, personality, or the 'greatness' of a single researcher to market its ideas, and uses the media to popularize its hypotheses, instead of relying on science and evidence to make the case for the treatments it espouses." Speaking of which, oh goody, "ARI proudly sponsors Age Of Autism (editor Dan Olmstead)." Wow, I wouldn't be too proud of that, myself! (Read the link. Srsly.)

Annnnnnnnnnnd Jenny McCarthy's book is PROMINENTLY displayed in a flash movie at the tippy-top front page which gives a very cult-of-personality-looking tribute to founder Dr. Rimland, and a "Want to know more about the autism treatments Jenny McCarthy is talking about?" And oh FSM, they keep mentioning "the mercury consensus paper," which I clicked on, and winced with pain at the horror. Yes, they're talking about heavy metal "detox" through chelation therapy. You know, like the one that killed Abubakar Tariq Nadama? And the "consensus" of which they speak is a consensus of their own participating doctors!!! Not a consensus of the medical community! A consensus of DAN! practitioners. It makes me sick to my stomach to think more children might be subjected to ill-advised and even useless and painful therapies, or unnecessary dietary interventions leading to potential nutritional deficiencies, just because of a slick-looking, medical-expert-sounding website!!!

Now, the DAN! horse has been flogged by better bloggers than I, so I'll move on to look at this Great Plains Laboratory.

I AM NOT A DOCTOR. But this site troubles me. On the very front page, it mentions "New Advanced IgE Inhalant Allergy Test including Candida and Thimerosal." Remember thimerosal, that substance which has shown NO LINK to autism in repeated studies???

Another interesting page-one mention is, "Deficient Cholesterol: A Common New Factor in Autism." Er. Really? :click: Ooooh, lovely, they show us some great-looking research by Richard Kelley, MD, PhD, at Johns Hopkins University-- but wait! That research isn't on cholesterol deficiency in ASD at all! It's on cholesterol deficiency in SLOS ("Smith-Lemli-Opitz syndrome (SLOS) is a well-known malformation syndrome with principal characteristics of psychomotor and growth retardation, cleft palate, hypospadias, postaxial polydactyly, and a distinctive craniofacial appearance consisting of microcephaly, ptosis, inner epicanthal folds, anteverted nares, and micrognathia." Kelley, R.) Gee, that syndrome seems to have way different manifestations from autism. As far as I can tell, Dr. Kelley makes no mention of autism anywhere in this paper.

But the ASD-cholesterol link is indeed being studied! The Great Plains page does go on to mention research by Elaine Tierney et al. at the Kennedy Krieger Institute. I looked up the paper they cited, and found this: "Although no sample had sterol levels consistent with SLOS, 19 samples [out of one hundred tested] had total cholesterol levels lower than 100 mg/dL, which is below the 5th centile for children over age 2 years. These findings suggest that, in addition to SLOS, there may be other disorders of sterol metabolism or homeostasis associated with ASD." Note the lack of a conclusive link, along with the words "SUGGEST" and "MAY BE." In my opinion, Great Plains Laboratory seems to have trotted out this very real and impressive research which only SEEMS to support their own conclusion but in fact does not. But by golly they aren't letting the lack of conclusive evidence hold them back from marketing cholesterol supplements to parents of ASD kids!!! Note the bottom of the page on Deficient Cholesterol testing, there is both a supplement advertisement and a testimonial, heart-rendingly quoteboxed, "I think Paulina is dying". GAH!!!

Then there is their FAQ, which contains the following advice for skirting your doctor to get their tests run:
Q. My doctor does not subscibe to complimentary therapies and will not cooperate with my testing. What shall I do?
A. Many of the tests that we offer at The Great Plains Laboratory, Inc. are also available through which will provide a physician signature for patients who order testing. Contact us, depending on where you live, we may be able to recommend a knowledgeable doctor in your area. Authorization does not have to come from your primary care physician; any licensed health professional can order testing in your state, including some chiropractors, naturopaths, nurse practitioners, or nutritionist/dieticians.
[emphasis mine]

But hey, if you don't like your doctor's answer, you can have one of ours! (You know, a doctor who's familiar with OUR methodologies, not just-- pfff-- medicine!)
Q. How do I find a doctor familiar with GPL's testing and interpretation?
A. The Great Plains Laboratory, Inc. has a database with 3000+ physicians in just about every state and country. Please call our Customer Service Staff at 1-800-288-0383 and a representative should be able to locate a practitioner in your area.

There's the "Our lab does stuff no other lab does" gambit:
Q. I already had the urine organic acid test done earlier by another lab. Can't I get the information from the earlier test?
A. No. No other laboratory routinely analyzes all the compounds that The Great Plains Laboratory, Inc. does. Most test for the inborn errors of metabolism and that's all.

And my favorite, the sales pitch!
Q. Where can I get nutritional supplements that are specially designed for children with special needs and food allergies?
A. Many products are available at New Beginnings Nutritionals.

And also, of course, no dubious website would be complete without copious TESTIMONIALS! Oh boyohboy, there's nothing like a feel-good page to distract from a lack of any scientific evidence of efficacy! If you can't cite studies, play on your audience's emotions instead!!! I did feel sorry for this one poor kid, whom they've already got on a gluten- and casein-free diet: "...We also had a 96 item food allergy scan done and Roan was allergic to apples, bananas, green beans, cabbage, egg yolks and whites and a few other things so we have also been avoiding them." And it's very possibly not even necessary.

Testimonials annoy me, because if they've got so much positive feedback, why not design a study? Get some real research to back up their claims? It's just easier and more profitable to run their business this way, I guess. Sadly, it's desperate parents and innocent children who pay the price.

We will see Parents B and C again at the seminar in December. I keep rehearsing the opening line of my polite-yet-passionate advocacy of science-based interventions-- "So, hey, I looked up that Great Plains Lab, and I saw some things that concerned me..."


Joy said...

What's deplorable is how shysters prey on the vulnerable. A few people suggested things I should try when I had cancer. Sometimes I smiled and nodded but mostly said what I thought - that if there were really a cure for cancer, everyone would know about it, so I'd take my chances on something that might actually help.

This autism fraud is especially harmful because of what it puts children through. I know people want hope (which is why the charlatans pounce) and am so glad TRIAD is all I hoped it would be. I'm also glad you blogged about it.

Chris said...

I wish you luck and success trying to engage with these parents. In my limited experience of trying enlighten the ill-informed it is rather like herding cats and I have pretty much lost the will to find the required effort anymore. Annoyingly, I still seem to find the effort to be really irritated by them.

intrinsicallyknotted said...

I hope you talk to them and can maybe encourage them to see sense. I know how it feels to have a friend (or aquaintance) buying into nonsense and pseudoscience and to want to help them get the facts. I have a friend who has recently gotten involved with a company that is a clear pyramid scheme, and I went through the same process you did, of researching the company and concluding the worst. Now I'm struggling to figure out what to say to her, and it gives me a knot in my stomach. I wish you luck talking to these parents and helping them get out of an even more harmful situation!

Perky Skeptic said...

Joy-- I cringe to think what you must have felt like, hearing the suggestions of folks who knew all about curing cancer. Gah! I'm so glad you came through everything you did!!!

Chris-- Thanks. I'm not looking forward to it, myself, but I cling to hope that it will do some good. Parent A really seems to have drunk the kool-aid, but Parents B and C seem to be in the Looking At Information stage, and hopefully we will be able to encourage them to be skeptical of alternative claims.

Intrinsicallyknotted-- Argh, sorry to hear about your friend! Thanks, and good luck to you, too! Pyramid schemes are an awful waste of money, time, and energy.

The Laundress said...

The corporate cures-and-salvation business folks have no excuse, they KNOW they are ripping people off and that is evil of them. Glad you are checking them over and thinking on how to bring this up with the parents who want to believe in their "cures".
As far as the parents, sometimes hope (in a jar, in a diet plan, in an alternative therapy) helps people cope-- especially when, as a parent, you feel overwhelmed and have a terrible need to do SOMETHING and there isn't any "thing" to be done.


Perky Skeptic said...

Laundress-- That is so true about wanting to DO something. It is the hardest thing in the world to watch a child suffer and not be able to help. It makes me sick that quacks use that to market their fraudulent treatments, which in many cases end up harming the child! :(

jackieandstuart said...

Ok, I'm late to the blog party... We stumbled on a DAN! doc by (bad?) luck while having our son evaluated for some vision and motor skill issues. We feel he was spot-on in evaluating/treating his vision issues (the guy's an OD specializing in vision therapy, so he should be) and even in his assessment that we were dealing with some "retained primitive reflex" issues (I believe he's also SIP certified, so again not surprising), but then he ordered tests from Great Plains Labs. At the time, we were uninformed and uneducated about the Lab, the tests, and DAN! so we went ahead with the tests (most not covered by our insurance and ALL expensive!).

When the results were back with him, he wanted to see us again. This meant another trip (more than 5 hours each way) and another visit charge that would yet again NOT be covered by our insurance. We went, still unaware of the DAN! affiliation or their GF/CF mantra. We were floored when he started recommending GF/CF (as strict and soon as possible) as well as lots of 'supplements and probiotics' from Kirkman Labs (another DAN! Vendor).

That was nearly 3 months ago. We tried GF/CF for awhile and embarked on some research of our own. Did you know that you have to go nearly half-way down the second page when doing a Google search on "Defeat Autism Now" before you find the first negative comments or even a listing of 'pros and cons' on their philosophies and practices and another several pages in before the next? We might not have done as much research and soul-searching as we have except for the fact that several of the food items that our ALLERGIST had determined to be significant allergies (using the "gold-standard" prick tests) such as peanuts and tree nuts were showing as "clinically insignificant" on the Great Plains results. We began to grow suspicious and subsequently skeptical.

Following a strict GF/CF diet is outrageously expensive and I won't even comment on the cost of the supplements. I understand the desire of every parent to DO SOMETHING for an ailing child, but if I had a severely autistic child for whom such a regime had been prescribed, didn't understand the lack of scientific support for the diet AND lacked the finances to even attempt it or had to go into debt to comply, there would be huge guilt and/or unwarranted stress on me. Think what this must do for the autistic children of these parents with added stress! Stress can worsen autistic symptoms, right?

Now, I need to note that no one (pediatrician, neurologist, OT, PT, school behavioral specialist, etc.) has ever even suggested that our son might possibly be autistic, at least not until this DAN! guy. He does have a few "symptoms" that can be found on the seemingly, EVER-GROWING list of symptoms and disorders on the "Autism Spectrum". He's very functional, very communicative, and incredibly intelligent (not just a biased mom speaking - tested at school). He just has a FEW sensory issues, motor development delays, and is a toe-walker. He's been in OT & PT for about 6 mos. (not w/ this doc) and has made HUGE - I mean GINORMOUS! – improvements on nearly all of his motor issues. Our annual visit to the allergist is in a couple of days and we now expect to have him tell us that this testing (IgG) was a bunch of 'Hoooey'. We are also scheduled to see a developmental pediatrician who is NOT DAN! just to rule out any long-term issues and make sure we're headed down the right road with our OT/PT.

Thanks for your candid information and skepticism about DAN! and your gumption to voice it.