This column receives a welcome avalanche of correspondence, but our recent discussion of autism as a "whole-body illness" has generated more e-mail and faster than any other topic we've considered.
The mail comes mostly in three varieties -- parents telling their own tales of battling multiple illnesses and disorders in their autistic children; describing what they believe to be significant improvement through biomedical approaches; and venting anger at pediatricians for failing to see the disorder the way they do.
Matt Mester of Morganville, N.J., neatly summed up those aspects: "My child is toxic and needs to be detoxified." Here is his letter.
As a father of a 5 1/2-year-old boy diagnosed with autism at age 2, I have followed your series very closely.
My son also exhibits a series of biomedical problems that are completely out of the ordinary compared to my other 2 children (both neuro-typical), not to mention my wife and myself. Jack is virtually non-verbal and would be classified as severe, although thankfully Jack is not self-destructive and he is a happy boy.
He cannot tolerate dairy or soy, has had chronic constipation since infancy, and has terrible seasonal allergies. Like too many other children, Jack has regressive autism, which became apparent at approximately 18 months of age when he lost his language as well as his interest in the world.
Thankfully, the medical science field has progressed since he was first diagnosed 3 years ago, and we are seeing our first bit of significant improvement in Jack since we started Methyl B-12 shots and glutathione treatments this past summer.
In addition, a very recent blood test has revealed an underlying metabolic problem that will apparently need to be addressed -- we are still awaiting detailed results of a series of tests to lead us in the right medical direction.
I'd like to specifically comment on a statement published in your most recent article, quoting a parent: "Autism is a disease that affects the immune, GI and central nervous system." I honestly disagree with this opinion and offer the opposite conclusion.
In my humble opinion, there is no such thing as autism. Autism is a series of symptoms caused by one of a number of underlying medical issues -- most highly related to metabolic or detoxification problems. These problems are more than likely genetic, yet triggered by an environmental cause.
I believe that each child needs to be individually diagnosed and tested, as autism is a very personal disease, therefore studying and revealing as many possible treatment paths is the right thing to do. There is no cure-all, rather there are a number of paths that must be followed until you find the right one. And unfortunately, all of the paths have yet to be identified.
While I'm not certain that thimerosal (a mercury-based vaccine preservative) or mercury caused my son's symptoms to appear, I'm becoming more and more certain that my child is, for lack of a better word, toxic, and needs to be detoxified. His improvement with B-12 and glutathione is proving it to me once and for all.
Here is another representative letter, from Mr. and Mrs. Lawrence Haite of Kingston, Mass.
We are certain there are medical issues at the forefront of our ten-year-old son's autism. Sadly, they were missed by mainstream doctors for most of his early years. When we received his diagnosis there were no blood tests, screenings or medical work-ups. Most simply advised therapeutic services which in turn had to be obtained through adversarial means with our school district.
As we watched our son physically decline and had our concerns dismissed time and time again, my husband and I often thought of just driving to the emergency room of a major hospital in Boston and refusing to leave until we had answers.
Instead in 2001, I wrote the exact same letter to my son's physician, his neurologist and a doctor whom I had never met, but heard was having success treating children on the spectrum. The letter outlined all our concerns regarding ear infections, frequent antibiotic use, a multiple-vaccination schedule, suspected food intolerances, eczema-type skin rashes, pale skin coloring, the inability to tan or burn, imbalance of bowel ecology, poor protein digestion, chronic diarrhea followed by episodes of constipation, and malabsorption issues.
Further, our son presented with no protective antibody to Hepatitis B and elevated titers to measles. He also had nutritional and metabolic deficiencies as well as elevated HHV-6 and heavy metal toxicity. We did not receive any response from the aforementioned pediatrician and neurologist.
Thankfully, the physician we never met, Dr. Jacquelyn McCandless, responded to our request. She reviewed his entire medical history from birth and validated most if not all of our concerns. She recommended further testing and proposed treatment protocols that was the first real medical attention our son ever received. Improvements followed and we continue to address these issues today.
We parents have every reason to be angry with the AAP (American Academy of Pediatrics), but frankly we don't have time for that, because of the intense commitment to help our son. It is a double tragedy ... not only in what we believe to be the root cause of our son's autism (thimerosal/vaccine additive connection) but the way we were treated along the way.
Initially, we completely stepped up to our parental roles and did not wallow in "How did this happen?" but rather "How do we help?" The AAP did not. Ironically, it was only until we did the work to understand "how this happened" that we could truly help our son.
We struggle daily to work with and celebrate gains made ... but perhaps our son's treatment and outcome potential would be far less challenging had our concerns not been dismissed early on.
Last, here is a letter that suggests why a sense of urgency and openness is so desperately needed in dealing with a disorder that the CDC says afflicts 1 in 166 American kids. We withheld the name.
My son is 7 years old and I'm concerned about his future as an autistic adult. A little at a time I'm beginning to realize that his autistic behaviors are not changing that much, and that as he grows, he's becoming a larger body with the same behaviors.
I saw (ABC TV's) "Nightline" the other night and, for the first time, saw an autistic adult. There is no information out there on the subjects of teen years and adult years, and what to expect for elderly years for autistic children. I cannot bear the thought of my son in a mental institution just to have a place to live when he grows old.
For now, we've started a trust fund for him so that maybe when he becomes old enough, he'll have money to have someone take care of him when we're gone. Is this the right thing to do? What else do I need to do?
Readers who have a constructive response to this father are invited to offer it via this column. E-mail: firstname.lastname@example.org