The Advocate.

In general I have always thought the following: you get sick, you go to the doctor, they check you out, they figure out what is wrong, they prescribe or suggest something to cure/fix/alieve/help. This does not seem to be the case with Autism.

With Autism it seems that we must become the experts. Then we get the fun job of going in to see doctors, watching their faces as we describe what we want done (say a blood test talked about in every autism book I have read so far)...and knowing that they think we must be crazy liberal wackos all into nature and stuff...handing over to them copied information and research, and on and on.

On top of dealing with this diagnosis we get to entertain (and attempt to educate) skeptic doctors with our talk of "leaky gut" and food intolerances and supplements and additional biomedical testing.

Basically it seems that we must become the doctor. We must learn all about what is being tried, what has been successful, and how to navigate a variety of medical fields. Sweet.

There is just so much to know...

All this came about as we met with an Allergist this morning. I went in with the idea that I wanted to have Simon tested for food allergies and for a few general ones (cat/dog, mold, mites - Chris is allergic to those). He has had a recurring stuffy and or runny nose on and off for a long time. We ended up doing the scratch test for the three - he was not allergic to any of them.

I told the Allergist what I have been reading regarding the effect of food intolerances/allergies on kids with autism. That through removing some of the common allergen foods some of the autistic symptoms could be alieviated. He wanted to know where I had read that - he had no knowledge of that - and gave me that *look* that I did not know what I was talking about. I had Lisa Lewis' Special Diets for Special Kids  with me that includes an entire chapter on allergens and food intolerances. I handed it over and he read just a bit as we sat there and concluded that the basic premise made sense (must have made medical sense)...and that he had never thought of it within the context of autism. He photocopied the chapter.

After talking with him he recommended trying a dairy elimination diet (which we had already started last Sunday). It is possible that Simon's nose issues could be from a casein (dairy) intolerance as well. He also mentioned that the dark circles under Simon's eyes are another indication of a possible casein allergy. We have an appointment to meet with him again in three weeks to see how Simon is doing and revist our concerns. I plan to copy some more articles for him in the mean time.

The hardest thing for me is synthesizing all the information to present a cohesive case to the doctor. I get all jumbled up and intimidated by the MD after their name. In reality, I just need to remember that in most cases they simply do not have enough experience or knowledge about Autism. I need to be the one in the KNOW.