Biomedical Trepidation

Most of you know that I am a biomedical skeptic.  Alanna is on a gluten-free diet but beyond that, we do not do much in the way of biomedical treatment.

All of that may change next week.  After our failure with clonidine my wife and I decided it is time to give in and go see a DAN doctor.  We feel that we have nothing to lose and possibly something to gain.  After all, the gluten free diet did help with gastrointestinal problems, so perhaps Alanna is sensitive to diet.

I am hopeful because there is some research out there proving some of these therapies can be helpful, but also nervous because of the potential for harm.  However, we have ABA therapy and speech therapy well established now, so any additional huge leaps in progress we would have to attribute to biomedical intervention.

In general I would describe Alanna as generally happy, but sleep deprived and on many days, just "unwell".  She is often lethargic and spacey and I don't know why.  Sometimes she cries for no discernable reason.  I have to wonder if she just feels ill... sort of like I feel when I don't exercise and eat crap for three days straight.

Maybe it will help, maybe it won't.  But before we pump her full of more drugs, we feel we ought to at least investigate it.

Yes, I Am Afraid of Wheat

One of the first things I am often asked about when the topic of autism comes up is the gluten-free, casein-free diet.  We started Alanna on a gluten-free diet (we never eliminated casein because we deemed it too restrictive) some time ago.  Now that it's been several months, what are the results?  I'm not sure if it is impacting her behaviour much but a lot of the elimination problems seem to be better.  She still craves gluten though - Alanna likes to steal her brother's bread products.  We try not to eat it around her because, let's face it, that's torture.

Gluten-free products are expensive.  I want to take her off, especially in the light of this recent study out of the University of Rochester, but I'm too chicken.  Bok-bok-bok!  I don't want to lose any gains we've made.  So she's sticking to gluten-free until we can muster the courage to try to re-introduce anything. 

Mystical Diets

This is gluten.  It's an important part of wheat used in practically all processed and prepared food due to its uncanny ability to hold stuff together.  Unfortunately, some people have celiac disease, which makes them unable to consume gluten for fear of inflaming their small intestines and causing all sorts of problems.  Jenny McCarthy and others claim that a variant of this diet, the gluten-free / casein-free diet (GFCF), helps children with autism (casein is a protein found in dairy products).  Interestingly, Alanna's favourite foods are bread and cheese.  I have heard some people claim that children with autism crave these foods due to the "opiate" effect or "leaky gut" effect.  While research in this area is on-going, studies have shown that in double-blind trials the GFCF diet does not appear to impact behaviour in children with autism.

I am not particularly a fan of biomedical approaches to autism because I do not see any scientific proof that they work.  However, I recognize that sometimes things work for only a proportion of the population and it's impossible to know before one tries.  For example, melatonin, a naturally occurring chemical in the body, helps us fall asleep.  Most studies I have read indicate melatonin does not seem to help children with autism (or is inconclusive), but for Alanna, it helps tremendously.  She can sleep.  Before she was on it, she took over an hour to fall asleep and can now do so in minutes.

So, we are going to try to go gluten free with Alanna.  She is too in love with her cheese to eliminate casein, so we will start with gluten.  If this helps the autism, great.  But our main reason for doing so is to help her poor digestive tract.  She has smelly gritty diarrhea... I look at it and it's just not normal.  Perhaps Alanna has a co-morbid condition such as celiac disease (that is, the problem is not caused by autism but by something else she has in addition to autism).

So autism aside, there is something wrong down there, and the first thing to try is to eliminate some foods until we find out what it is.  We'll try gluten first and see if it helps.  If not, we'll try something else until we find out what it is.  If Alanna's digestive tract was fine, we'd probably not bother.  I'm not expecting changes in behaviour; I'm just hoping for normal elimination.  Poor girl.

Jenny McCarthy and You

"Why yes, I have heard of Jenny McCarthy.  No, I'm afraid she won't help me, but thanks for bringing her name up."

This is a very typical conversation between myself and some well-meaning person who has just learned Alanna has autism.  It is unfortunate that due to our celebrity worshipping culture the only thing anyone knows about autism is Jenny McCarthy's name.

Jenny McCarthy is a Playboy model who has found instant fame basking in the glow of Oprah's pseudo-science.  She advocates what is commonly referred to as the biomedical approach to treating autism.  In my opinion, most of these treatments are money-making schemes designed to feed off the wealth of parents with autistic children who are desperate for a cure.  It's the same kind of stuff that one might use to "cure" one's cancer - with vitamins and "de-toxification" techniques.  It's also bunk.  Anecdotal stories of a child being "cured" of autism by taking vitamins is not a scientifically controlled study.  Show me the proof it works.  That's where it falls down; no one can show me any proof of the wild claims Jenny McCarthy makes.

Some of you may be thinking, "Just because it's not scientifically proven doesn't mean it doesn't work."  Well, true enough.  Many parents think the gluten-free casein-free (GFCF) diet helps their kids (or in some cases, just GF or CF).  Do I think this diet can relieve digestion issues making children less prone to bad behaviour?  Sure I do.  What about the claim that "opiate" like substances escape into the brain via a "leaky gut"?  Well, maybe.  Research is being right where I live into this very hypothesis.  But lots of parents have tried GFCF with no impact.  So it works for some children to help them, but it doesn't cure autism.  And it doesn't work for most children.   Will we try with Alanna?  I think maybe someday soon, but we're not rushing into it.

Bottom line - if you are the parent of a newly diagnosed autistic child, or suspect your child has autism and they have a lot of digestive issues (chronic constipation, diarrhea, odd stools), you probably can't lose trying GFCF.  But please, don't use biomedical treatments as your first-line defense.  Use something that has been researched for which you can measure progress.  Get a good Applied Behavioural Analysis program going first before venturing too far into Jenny's world.

Sorry Jenny, I'm glad your son is cured.  But I have only so many dollars and I have to use what's proven to be the most effective.