Saturday, February 27, 2010

When a mother says something works...

[Update: A revised version of this post has been published at The Thinking Person's Guide to Autism, July 2010.]

One side effect of Joy's ongoing love of Baby Einstein videos is that I've practically got them memorized, including the self-promotion stuff that comes at the end of the VHS tapes. Baby Einstein's creator, Julie Aigner-Clark, touts the benefits of her series with testimonials from various Baby Einstein devotees. Somewhere in the middle of the promotion, she herself says enthusiastically,

When a mother says something works, you automatically try it!

She wasn't talking about alternative therapies for autism. But perhaps she might as well have been.

Two things today are making this connection for me. One was the second half of the alternative-therapies presentations by trainees in my LEND seminar.

The other was coming home to find Jenny McCarthy highlighted in the pages of the Time magazine that just arrived today. Jenny McCarthy, the celebrity face of the unproven-therapies-for-autism movement.

'Try everything,' says McCarthy. 'Hope is the only thing that will get us up in the morning.'

Karl Taro Greenfield, author of the article (and also brother to 42-year-old Noah who swims in the deep waters of the autism pool), somewhat wryly states, "it is hard to find a controversial, novel, or alternative treatment that McCarthy doesn't say has some merit."

One of the many alternative interventions that McCarthy has tried on her son and touted along the way is the gluten-free, casein-free (GFCF) diet for autism. That also happens to be the intervention about which I and two classmates presented yesterday afternoon. And I mentioned her in my portion of the presentation...

So here's some of what I and my co-presenters talked about! The gluten-free, casein-free diet is an elimination diet. To be eliminated are gluten, a protein found in grains (wheat, barley, rye, and some oats) and casein, a protein found in animal milk. Elimination diets have been around for a long time, and in general they rest on a very sound premise: if you are sensitive or allergic to something in your diet, stop eating it! The gluten-free diet is pretty much the only answer for celiac disease; if you have a demonstrated sensitivity or allergy to milk, dairy-free is the way to go. It's not an easy regimen to follow, but in those situations, it's known to be effective.

The "alternative" part of this therapy is the claim that GFCF can cure or ameliorate autism spectrum disorder -- in up to 90% of cases, according to Talk About Curing Autism (TACA). The underlying theory is this: People with ASDs are said have a predisposition to a gastrointestinal condition known as "leaky gut" or "autistic enterocolitis". The condition is supposedly triggered by an environmental insult -- vaccines, toxins, something perhaps as yet unidentified. When the condition is triggered, the hypothesis goes, you wind up with an incomplete breakdown of gluten and casein which escape through the leaky gut. The protein molecules/polypeptides travel through the bloodstream and attach to opiate receptors in the brain, leading to autism or magnifying the symptoms of autism.

According to this scenario, if you remove the gluten and the casein from the diet, the gut will heal, the opiate reaction is halted, and the autistic symptoms are alleviated -- generally in a couple of months of strict adherence to the diet, sometimes taking up to a year.

This is not an easy diet to follow, especially for someone who may already have a very restricted range of foods to begin with. It requires constant vigilance on the part of the parents, careful ingredient checking and diet balancing and making sure that gluten & casein don't slip in from unexpected sources (a playmate's cracker snagged from the floor, a bit of standard play-doh, etc.) Pre-fab GFCF foods can be very expensive. If you want to do the diet less expensively, you'll spend a lot of time in preparing foods from scratch. Recipe-sharing online can ease that burden; there's even a webpage from TACA that outlines how to do the GFCF diet on food-stamps!

The questions we were to answer for our presentation included an overview of the relevant research. There have been studies from a number of angles: measuring opioid peptides in the urine, measuring intestinal permeability, studying the outcomes of people with ASD who actually go on the diet. In all of those areas, research is a bit thin on the ground, and the results are not definitive. We don't even know for sure if people with ASDs have more GI issues in general than people without, though we do know that GI issues that occur in typically-developing folks do occur in folks with ASDs as well.

In a happy circumstance for our presentation, a consensus paper came out just a month ago in Pediatrics (a high-profile, peer-reviewed journal.) A whole slew of GI experts got together, weighed existing evidence, made consensus statements regarding GI issues and ASDs, and recommended a lot of new research. Here's a the citation to the paper and some of the statements:
Buie et al., Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report, Pediatrics 2010;125;S1-S18

  • Individuals with ASDs who present with gastrointestinal symptoms warrant a thorough evaluation, as would be undertaken for individuals without ASDs...

  • The prevalence of gastrointestinal abnormalities in individuals with ASDs is incompletely understood.

  • The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, “autistic enterocolitis”) has not been established.

  • Available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free (GFCF) diet as a primary treatment for individuals with ASDs.

Interestingly, this consensus paper received some acclaim from both skeptics and proponents of the GFCF diet as a treatment for autism. Skeptics said, "Look, here it is in black and white -- current research data do not recommend this treatment!" Proponents said, "Look at all this research they're recommending -- we're finally being taken seriously!" (OK, those were both big-time paraphrase-summaries, but I think I've caught the flavor of it).

As it happens, there are already a couple of substantial studies of the diet itself in the works. I'll be particularly interested to see the results on one coming out of the University of Rochester: the data-collection was done a while ago, and as far as I know the analysis has been marching forward. This is a double-blind, placebo-controlled study where all the participants are on the GFCF diet but at certain points one group got GFCF snacks where another group got non-GFCF "challenge" snacks. [Update 5/21/10 - that study is now complete, and did not find any significant differences between the treatment and the control group. In other words, the GFCF diet did not help.]

A previous pilot study (Elder et al, 2006) took a slightly different approach, putting only half the participants on "the diet" but providing ALL foods for both groups, such that the participants and parents did not know whether or not they were GFCF. The study did not find any significant effects on either behavior or urinary peptide levels. However -- and here's the really interesting bit -- the parental reports and the researcher reports differed markedly. Parents thought they were seeing improvements that the researchers could not document. And nine of the families decided to keep going with the GFCF diet even when they were told that the researchers' observations didn't support it.

To me, this screams "placebo effect." People see what they want to see. No wonder the claims of efficacy are so high. To others, this may scream "only parents are the trustworthy observers; researchers can't see what's right under their noses!"

I do think that the GFCF diet is a different situation than secretin, which has been quite thoroughly debunked as an autism treatment (yet at one time had claims of helping 80% of ASD patients).

The thing is, some people with ASDs do have dietary sensitivities. Just like their typically-developing counterparts. When you address those sensitivities, people feel better. When people feel better, they behave better. And learn better. And interact better.

I'm open to the thought that there are more food sensitivities out there than we're aware of. But I'm not particularly convinced at this point that such sensitivities have any special causal effect as far as autism goes. My guess is that the evidence against the leaky-gut / autistic enterocolitis hypothesis is going to start to pile up. Autistic enterocolitis as a mechanism is under a certain shadow at the moment, in that the originator of the term (Andrew Wakefield) has been recently censured by the U.K. General Medical Council and his 1998 paper that fueled much of the speculation has been retracted by the Lancet.

We have not tried the GFCF diet with Joy, because we have not seen anything that would make us suspect a dietary sensitivity if she weren't on the spectrum.

Many, many families are trying it, however. This therapy seems extremely attractive to parents, and I think there are a number of reasons why. There are powerful testimonies out there, and high-profile proponents (from Temple Grandin to Jenny McCarthy). The diet has a reputation of harmlessness, though it can be nutritionally risky if not done carefully, especially for people whose diet is self-limited to only a few foods in the first place. There's definitely a "why not try it, what can it hurt?" vibe out there -- quite a bit of peer pressure, which can be hard to withstand when coupled with the 90% success rate claims. Besides all that, dietary changes are a familiar kind of intervention. Who hasn't "gone on a diet" at some point or another? Plus it's something that people can attempt without a prescription. There's plenty of DIY advice out there, on the web and in books and in support groups.

There is value in hope. There is value in parents feeling empowered and feeling that they are helping their child, even (I would argue) for those families in the Elder study who wanted to keep going even when the researchers weren't able to document improvements. And, as I said before, the GFCF diet demonstrably does help some people with autism -- as it demonstrably does help some people without autism.

I'm afraid, however, that the pendulum has swung too far with GFCF. Ideally people would be able to choose not to do "the diet" without being made to feel guilty, or to quit the diet in the absence of observed improvement without being told that they didn't try long enough (a YEAR?!) or that they must not have been doing it right. The counterpoint stories aren't as easy to find as the primary pro-GFCF narrative, but we do exist out here!

When a mother (Jenny McCarthy or otherwise) says something works, that can carry a big emotional pull. But that alone is far from sufficient to sort out the snake oil from the truly useful, or to decide what is really worth trying.

It looks like I'll be doing at least one more post about the rest of the alternative interventions presented yesterday: hippotherapy, hyperbaric oxygen therapy, vitamin therapy for Down syndrome, auditory integration therapy. Stay tuned.

9 comments:

TheRextras said...

At.least. *wink*

No matter how many more posts you turn-out, I.will.stay.tuned.in.

Outstanding work, JM!

"I'm not particularly convinced at this point that such sensitivities have any special causal effect as far as autism goes." I'll sign that, too.

My money, were I to spend it, is on a neural cause. By stating: "The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, “autistic enterocolitis”) has not been established." - they promotional physiological explanation is not credible.

(Plug for my top post and the link to a video series on the brain - in which causes of autism are discussed.)

Your statements regarding the reasons parents choose the diet are cogent. I want to interject the idea of a psychological need to control some part of a life circumstance so very beyond a parent's control - what do you think? For some parents, maybe. The line might not be fine between empowered and controlling.

Potential benefit is that the parent is assured they have tried everything. Potential harm is that the parent feels a failure when the diet isn't effective for curing the child's autism. Oh, I guess the harm is just in terms of the child? Not.

For while the discussion is about the child there is no leaving out the parent.

Again, my sincere compliments and my profound admiration. BRatK

K said...

EXCELLLENT post !
We are GF owing to a blood work that shows R has allergens - but thankfully it showed nothing against the C - which is R's main love - shredded cheese is desert after every dinner and I am so thrilled he can have it
There is a ton of guit
Karyn Seroussi has super intentions - I really think - but I dont think the GF CF diet works for all Auties
Even I became GFCF - as R continued to nurse at 2 - I wrote to Karyn and she was nice enough to answer - but she recommended that we stop nursing as breast milk had the opiates
I know she meant well but I did not take her advice as R was already under so much stress and nursing was one of the major sources of comfort for him

Chelli said...

JoyMama,
Loved your post! I feel that the GFCF diet is beneficial to some people with autism, just as it would be beneficial to some people without autism. My son is casein-free, but only because he tested positive for an allergy to it. Has it helped to remove casein from his diet? Yes. Does it make some of his autistic behaviors less noticeable? Yes, but it may just be because, as you said, he just feels better. I don't know. I do think that if a parent chooses the GFCF diet (or any diet), they should do so with the counsel of a dietician or physician.

Elizabeth Channel said...

As always, compelling and well-said.

We have been GF/CF for over two years, but began with eliminating dairy while I was nursing all three of my children who all exhibited colic and/or eczema while nursing. It's been an interesting journey with all three--one on the spectrum and two not. All three have been sensitive to casein (or lactose, who knows really?) while nursing; all three have developed eczema in toddlerhood with the introduction of milk into the diet, and all three exhibited ear infections when they drank "too much" milk. (The amounts with each child varied significantly.)

Also, their first cousin is sensitive to milk and has horrible eczema because he continues to consume casein.

There must be connection in this case, and still I say until the "gut" is healed, we'll never know how many nutrients are actually absorbed, and eliminating gluten and casein calms the gut in most people so I plan to continue.

I do wonder if the following treatments are being evaluated in your class: Interactive Metronome; EMDR; music therapy, ie The Listening Program or Vital Sounds; or Craniosacral Therapy/chiropractic.

Not trying to bug you, but just curious...

JoyMama said...

Hello friends -- thanks for the positive feedback so far! I'm breathing something of a sigh of relief to have positive comments from families where GF (K) or CF (Chelli) or both (Elizabeth) are being used. I appreciate it.

BRatK - power & control issues on the part of parents - I agree, deeply woven in. May need to address that in my at.least.however.many.

Elizabeth - I'm afraid we've presented on all the alternatives we're going to do in seminar. There are obviously a lot of them, we could have done more! The one in your list that I can speak to personally is craniosacral -- do a quick search on Elvis Sightings and you'll find several posts on our experience with it. I think I'll need to touch on that experience with my next alternative post. I surely don't want to give the impression that I am righteously opposed to anything with a hint of the alternative about it, 'cause we've been there too.

TheRextras said...
This comment has been removed by the author.
TheRextras said...

I had to delete my second comment because I gave wrong direction to my posts. While I'm here, excellent choice of title for this post, JM.

I reviewed both craniosacral treatment (JM and I interacted on that topic early in our awareness of each other). My blog can be searched through a lijit widget in the right column. I also reviewed ABA and many aspects of 'sensory' treatments. Not being a parent of a child with a diagnosis - take my opinions for what they are worth (to you).
(more from) BRatK

goodfountain said...

JoyMama

Great post! Everything you said makes so much sense.

Truly, special dieting is not for the faint of heart, and if I didn't feel it was benefiting C in some way, I'd be done with it lickity split. Who needs more complications?

What I wish is that there was more guidance from reliable and trustworthy resources (NOT Ms. McCarthy) for those of us that are doing it and seeing something positive. I often feel like I'm alone in my journey, despite that there are other parents doing it -I just don't trust other parents for guidance.

Anyway thank you for writing on this topic with a sound and reasonable voice.

JoyMama said...

I have removed a comment from a purveyor of questionable genetic testing for gluten sensitivity, linking to a site that requests donations in the complete absence of any attempt to demonstrate non-profit legitimacy. Note that, while I do not pre-moderate comments at this point, I will cheerfully remove post-hoc any such product-hawking, alt-med or otherwise.