In our last column, "A whole-body illness," we wrote: "Something is medically wrong with many, many autistic children. To be more precise, many things are wrong with them. Yet autism is defined by the health authorities as a mental disorder, diagnosed solely by observation."
That prompted lots of e-mails from parents describing all kinds of ailments that, taken together, suggest a pattern of pervasive illness in some people who have autism.
With the American Academy of Pediatrics now holding its annual convention in Washington, we decided to share some excerpts and ask two questions they might want to address: What is wrong with these kids, and why are so many parents so angry at so many of you?
My 14-year-old son with Asperger's Syndrome has several things in common with other parents that I know with kids in the Autistic Spectrum.
1. Abnormal Immune System. He has asthma and is allergic to dust, animals, pollen, and mold. He has gotten allergy shots since he was six and must have them bimonthly.
2. Abnormal Gastrointestinal System. He has recurrent bouts of diarrhea with fever and stomach aches, and occasional vomiting. All tests come back negative. Has very large amounts of gas.
3. Red ears. His ears become beet red and are very hot to the touch for no apparent reason.
All these main symptoms are common in the AS children that I know.
I would just like to add that my 13-year-old son, newly diagnosed as high-functioning autistic, has had immune problems his whole life. He had a huge history of ear infections (tubes inserted by 11 months old), inexplicable high fevers (105 plus) with no other symptoms, a histiocytoma (tumor in his femur, immune system related) and most recently a halo nevus (immune system attacking a mole on his back).
He has a large list of learning disabilities, but I've had trouble finding a doctor that can add all of this up. I think each thing adds up to the whole of him being autistic, but the doctors only see each individual problem for what it is.
I just wanted to add my testimony to those whom you quoted. Our son is 4.5 and was diagnosed with autism two years ago immediately following a series of ear infections, the most severe of which left enough fluid in his ears to cause moderate hearing loss. I had always suspected that his autism was caused by something physical, some illness in his body, but none of the professionals we consulted took my suspicions seriously.
Then about 10 months ago we had our first consultation with a DAN doctor (Defeat Autism Now doctors use biomedical treatments for autism symptoms).
We went through many tests to determine our child's physical state, and we took him off casein and gluten and began vitamin therapy.
Within three weeks after changing his diet, he began to speak in full sentences, and actually look at us and respond to us when we asked him questions. We are continuing with biomedical treatments and he is continuing to improve.
No one can tell me that his abrupt, dramatic turnaround was simply coincidental with starting this biomedical treatment. I know that my little guy, like many other children diagnosed with autism, has some serious health issues that are impairing his ability to communicate and interact. Thank you for bringing these issues into the mainstream.
My son also shows allergies by both blood and skin tests to every food he eats, has ever eaten, and many he has never tried. When two years old, an Ig panel was run for an unrelated condition (pneumonia) -- IgE levels 10,000 times above normal.
"Autism is a disease that affects the immune, GI and central nervous system" -- This is our experience absolutely.
Our son is now adult, 22 years old. We continue to try to find things to help him. He was in and out of hospitals and doctors' offices for the first few years of his life. We've just about given up on regular medicine at this point as our son is allergic to most drugs anyway.
I would agree that autism has some form of physical symptoms as well. My son who is sixteen has had chronic ear infections up to about seven or eight. He was on so many antibiotics that I got tired of filling the prescriptions and stopped at one point. The ear infections seemed to clear up on their own.
He has had many rashes due to drugs he has been given such as codeine for tonsillitis, and penicillin. He has food allergies. He has learned what foods agree with him and ones that do not. All trial and error on his own.
Sometimes he does not appear to be as "autistic" as other times. He is not retarded but he struggles socially.
We don't go to doctors anymore. I don't like being bullied and made to feel stupid. I would only go to a doctor for accident-related events.
My nine-year-old grandson had numerous ear infections when he was about 15 months old and a two-week-long bout of diarrhea as well. He has only said a word or two since then, so he can't tell us how he feels. He puts his fingers in his ears a lot, so he must be supersensitive to sound (I've seen a few other autistic children do this as well).
His ears and sometimes his face also turn red a number of times during the day (but my 88-year-old mother apparently has had that symptom although she has always been incredibly healthy). He has good days when he seems "more normal" to us and lifts our spirits, but on other days I know he is not feeling well because he is more short-tempered about everything.
I have a 20 year old autistic daughter. I cannot believe the lack of understanding associated with this condition! I thought I was the only one to notice all these other "trends." I am not a doctor but after 20 years of this I feel like I could take a test and get my degree within the week.
Doctors and scientists obviously are NOT listening to parents.
My daughter has always had bowel issues, swallowing problems, allergies, ear infections and, though youthful genes run in my family, she looks 12 at the age of 20. Now as she is becoming a young woman, it has become painfully obvious to me that hormones are wreaking havoc on my precious daughter. The one "expert" I spoke with about this subject knew nothing.
I will not, and cannot afford to, put my daughter through the insanity of the medical system, trying to find a doctor that knows what they are doing. We deal with her autism and its adverse symptoms with a holistic agenda. We control her diet and use supplements, and maintain a very open and honest line of communication.
Which is almost an oxymoron. That communication consists of me digging and dragging bits and pieces of information out of her and putting it together like a puzzle. I maintain a constant vigil of reading and listening to all the latest research and information. The most accurate and effective information I have ever attained is the experience of other parents.
Why can't medical science see the obvious?
This ongoing series on the roots and rise of autism welcomes reader comments. E-mail: firstname.lastname@example.org