Sunday, February 10, 2013

diet therapy? show me the data!

I’ve done a little reading (okay, a lot of reading) about autism in the past few years.  I’ve been to a few conferences, heard a few speakers, and met a lot of parents of children with autism.  I’m not an expert on autism but I have tried to educate myself.  There is no cure for autism.  However, sometimes I read about the latest “cure” and wonder how many frantic parents are buying into these hopes.  When a parent is trying desperately to help their child, they want to be DOING something.  They often grasp at straws.  There are some pretty wild ideas out there from time to time.  Sometimes parents are so desperate, especially right after the diagnosis, they will try almost anything, out of desperation.  I think most of us go through it.  I imagine it could be divided up into stages like grief is: denial, anger….  

I’m a black and white thinker so I usually want to hear about the research behind an idea and take a look at the data.  Swimming with the dolphins and mud baths do not have the data to back them up like discrete trial and early intervention does.  Therefore, we did not mortgage the house and rent a couple dolphins.  We did, however, mortgage the house and commit to several years of early intervention.  I am a firm believer that early intervention is the key.  I have data to back that up. 

I’ve read about vitamins and diet therapies.  I’ve talked to people that fully believe in them, but I’ve never been convinced.  I did have Tate tested for allergies and he was allergic to nothing.  Of course, almost anyone would feel better eating healthier.  I would never suggest there are no children with autism who need a special diet but I don’t believe it is at a rate that is any greater than the general population.  I would have to see the data to be convinced.  The data of both populations, that is.  I have friends without autism eating gluten-free and they say they feel a lot better.  I have friends who are vegetarians who say they feel better too.  That is great and I can appreciate that.  So…. don’t misunderstand.  I’m not bashing diet therapies if you see results, but I am not taking Tate down that road at this time.  I do know of a mom in my community who swears that diet therapy and vitamins is “the answer” and is very vocal about it but no one seems to see an improvement in her child except her.  Of course, that is only one child, and since mother knows best (and I do believe that) I’m happy that she is happy with the results. 

The link below is one of the best articles I have read in a while about diet therapies and why they cannot be relied on as a reliable “cure” for autism.

I read the articles put out by Autism Speaks and other organizations.  I keep waiting for all the claims made to be backed-up with studies.  Often the articles make a claim that gluten-free diets make a difference but have no data.  Other articles put out by the same groups will say that data does not support the theory that gluten-free diets help children with autism.  However, any article that I ever read about behavioral therapies has favorable data to back it up.  THAT is why I have always turned to behavioral therapy for Tate.  We followed him around with a clip-board taking data for years and it proved the results.  If I had been doing diet therapies at the same time, I probably would have claimed the diet therapies did great things for my son.  If you’ve done diet therapies and NOT done other things, did you take data?  Do you have the data?  Taking data is a pain but I cannot believe it would be any more painful than watching a child’s diet and trying to remove wheat and milk.  We need parents who are using the diet therapies and NOTHING else to take data and compile it.  We need some clinical studies by reputable groups.  Show me the data!  

A few days ago I was doing a little reading about seizures and autism.  They are often co-morbid, meaning many people with autism also have seizures.  There are many things that can be co-morbid with autism: depression, Tourrets syndrome, ADHD, Obsessive Compulsive Disorder, to name a few.  Sometimes, some of these things show up when a child reaches puberty.  Tate is there and I have been watching him, knowing it could happen.  So far… So good.  One of the articles I read was written by a mom who has an interesting theory.  She believes that the stereotypic behaviors people with autism display, such as laughing inappropriately, becoming fixated on an object, posturing, or eye-gazing, are not really self-stimulatory but seizures.  She had already had MRIs performed and doctors tell her that her son was not having seizures but she continues to believe the self-stims are seizures.  Perhaps her child is different than mine.  I cannot know.  But I do know that Tate is not having seizures when he is wiggling his fingers in front of his eyes, crossing his eyes, squinting and peering at things at an angle, giggling at nothing, or staring in to space.  He is stimming.  Period.  It is part of autism. 

Sometimes I think, we (as parents of children with autism) grasp at anything that will help us to find the whys of the autism.  We want so badly for there to be a way to fix it, or an explanation that can help us make sense of it so we chase the slimmest possibilities.  On one hand, I’m thankful for the people who do pursue these ideas.  Someone came up with the idea to give kids with ADHD a stimulant instead of a depressant and that has totally changed the way kids dealing with hyperactivity are treated.  That, is just one of many examples. 

Thinking outside the box, sometimes leads to great things.  Tate learned to regroup in math because his wonderful para got the bright idea to try it on the i-pad.  Tate had failed to learn the concept while using pencil and paper for a long time.  It took only a few minutes of “playing” on the i-pad and Tate mastered the skill.  Children with autism, all over the country, are using i-pads in their classrooms and great things are happening.  So, I pick and choose.  I chose early intervention.  I did not choose mud baths or holding therapy.  I pick the i-pad.  I do not pick removing gluten.  I do not choose dolphins.  I chose hiring a Behavior Therapist who has become like family to us and who has worked with hundreds of children with autism.  Ironically enough, that behavior consultant has some clients that use diet therapies and other therapies that do not have research to back them up.  How could they claim the other therapies are THE THING that is helping their child to improve if they are also using behavior therapies?  Some of us have ONLY used those behavior therapies and also seen the same fantastic improvements in our children.  Behavior therapy has the data to back it up.  Many studies have ben done.  Show me the numbers.  I believe in data.  

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