Eating with Autism-2

There is controversy around the various ‘bio-medical’ treatments of autism and one of the most controversial areas is diet.  Many parents and physicians think that their children with autism are helped by restrictive diets of one form or another, the most common variant being the gluten-free/casein-free diet. Others include Feingold diet, the Specific Carbohydrate diet and the low-oxalate diet.

A recent study of the nutritional issues in autism can be found HERE.

When my daughter was  in her late teens she developed symptoms of anxiety: pacing, increased tantrums, aggression toward some of her teachers and upper GI symptoms of regurgitation and belching.  The neurologist recommended trying medication with risperidone.  I was not ready to make that leap at the time and the school did not approve of medications for behavior control anyway.

The school did not approve of  restrictive diets and supplements either.  Their method was to increase the student’s tolerance for a variety of foods by slowly encouraging new tastes, smells and textures.  Many children with autism are undernourished because of multiple food aversions and self-restriction.

After I attended a conference on the bio-medical treatment for autism put on by the group Defeat Autism Now! (DAN!),  I thought that it could not hurt to try some diet and supplement changes to see if it would help.  The school was willing to try the gluten-free/casein-free diet for 3 months and we also gave her some vitamins C and B as well as a balanced fish oil supplement.

The short story is that her behavior and happiness level improved immensely with this small change in what she ate.  Even her teachers admitted that she was able to control herself more easily and that she was able to concentrate longer in class. We added some digestive enzymes and things continued to improve.   When the neurologist mentioned trying a low-glycemic index diet for seizure control we instituted that as well.   Her last year at school was her best ever.   Her noise aversion disappeared and she was able to enjoy bowling for the first time.  She began learning to use a communication device and was more connected with people and more social.  Her gastrointestinal symptoms improved and she was more purposefully energetic.

The longer story is that when she transitioned into the adult world they refused to continue her diet  and despite many attempts to change things we have been completely unsuccessful in instituting even a reasonably healthy diet at her house.  We think we are making headway, we get nutritionists and dietitians involved, we get a commitment from the Agency to provide the diet (which is prescribed by a physician), then the staff at the house changes and all is lost to the wind.

Now, sadly, we have been forced to go the medication route anyway and are dealing with yet another set of side effects.  We are also changing seizure medication; tapering up and tapering down.  And we have yet another house manager to educate about food.

I am in constant awe of the parents who have been able to keep their children at home, who have control over what  their children eat and how they are treated.  It is extremely difficult to maintain these restrictive diets even at home and it takes maximum dedication and caring to do so.

So stop making fun of those over-protective moms who won’t let their kids eat the birthday cake; support them instead and be glad you do not have to do it at your house.

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2 thoughts on “Eating with Autism-2

  1. I can’t imagine the frustration of finding a diet/meds combination that works, then having it all go by the wayside with a change of staff. I think I’d have no hair left from constantly tearing it out in a fury. Lovely Lily must suffer greatly being whipsawed this way. I am in constant awe of the parents who continue to do battle on behalf of their adult children, long after most of us have been able to turn that task over to the kids themselves. I can do little more than bear witness to your love for Lily, and that I do wholeheartedly. And, vote for politicians who think “common good” includes consideration of the most vulnerable among us. Pam

    • Thank you, Pam, for reading me and for commenting. I write because I do not want the thoughts to slip away…and because my dog doesn’t understand what I’m telling him! I’m honored that you do.

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