One advantage of writing an ongoing column is trends become evident as readers respond over time -- trends that might not emerge in a single installment, no matter how detailed.
Here's one of those trends: 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. Here is what the Centers for Disease Control and Prevention says on its Developmental Disabilities Web site:
"Autism Spectrum Disorders (ASD) are defined as a constellation of behaviors indicating social, communicative, and behavioral impairment or abnormalities. The essential features of ASD are (a) impaired reciprocal social interactions, (b) delayed or unusual communication styles, and (c) restricted or repetitive behavior patterns."
After hearing from so many parents, however, our sense is medical disorders accompany autism so frequently that not mentioning them as possible symptoms may be an omission. Here is a sampling of recent e-mail messages to Age of Autism:
He turned (after regressing into autism) from a healthy happy baby into a sick and unhappy child. He did not sleep much, he cried, he screamed. He developed allergies and went through many ear and chest infections. He had chronic diarrhea.
Among other things, our son had gut parasites, ulcer bacteria, zinc deficiency and cysteine deficiency. Any doctor who took the time to order the necessary tests could have detected most of these. No doctor had ever bothered. Once we began treating our son for these conditions, his health improved dramatically.
He had chronic rashes and recurrent infections in his skin and genitals, and constant diarrhea. We went on an odyssey of doctor appointments trying to unlock the source of these ongoing maladies. Nobody had any answers. At one appointment I was simply informed, "All the kids on the (autism) spectrum have the diarrhea. It's just the autism."
Adam has a combination of pituitary dysfunction, endocrine dysfunction, hypothyroidism, hyperlipidemia, hyperinsulinemia, low growth hormone and unspecified metabolism disorder ...
My son has severe autoimmune (colitis or ileal nodular hyperplasia, thyroid autoimmunity, myelin basic protein autoimmunity, et al.), gastrointestinal (intense gut pain, malabsorption), endocrine (gh deficiency) and metabolic (methylation deficiency, low levels of insulin-like growth factor, extremely low levels of glutathione) problems.
He only was "fixed" with the label of "autism" by a neurologist who failed to test or note his medical conditions, and whose business is to determine whether children fit some of the criteria listed in the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders).
But "autism" completely fails to describe my son's condition and, lamentably, fails in any way to address his needs or to help him get better.
To date, (our doctor) has treated only a handful of children with autism, but of the 50 children she has treated, two have had pituitary tumors and a condition called empty sella syndrome. My son is one of those two.
In her preliminary evaluations, our doctor has found that the majority of her patients with autism are deficient in growth hormone -- a hormone secreted by the pituitary gland. She has theorized that, although most of these children are not short in stature, they do, for some reason, appear to produce insufficient levels of growth hormone.
What we see in Carmen is a strange blood disorder that has no explanation. She has macrocytosis, and was diagnosed as such when her white blood cell count kept falling. Again, it goes back to her immune panel and the irregular levels of IGg subclasses.
I have a child with signs of arthritis, swallowing problems, eye problems, gastro problems, psychological problems ... and the worst, epilepsy. My son has serious medical conditions and very few doctors to help treat him.
I believe there is a high correlation of food allergies with autism, not to mention that allergies like peanut are increasing significantly among our children. I am always wondering why this has not been pointed out (that I have seen) in the media. No one knows why the increase in food allergies either, but what we do know is that they result from an overactive immune system.
I am the parent of a 30 year old autistic male who currently suffers from severe arthritis in his hands and arm joints, so much so that he refuses to let go of his right arm that he holds with his left.
All these ailments are repeated over and over in the e-mails we have received. Even the earliest recorded cases -- from the 1930s -- display an unusual set of health problems. Leo Kanner, the preeminent child psychiatrist of his day, took medical histories on each patient at Johns Hopkins University in Baltimore. One reader points out that of the 11 initial cases:
"Donald T. (the first patient Kanner saw, in 1938) had a deadly attack of juvenile arthritis, another child had otitis media (ear) infections, another child tonsilitis -- all immune problems.
"Unfortunately, a graphic and complete medical history isn't available. Of course all of these problems described above were not considered part of the disorder; only recently (last 15 years) has the biology of autism been looked into. I wish we had the ability to see that important clinical information."
Actually, we do: The Hopkins archives presumably contain more detailed records of not only these first 11 children, but also the more than 150 Kanner eventually diagnosed over the next several decades. Our request to review those records was denied by the Hopkins privacy board on grounds of privacy and practicality.
Perhaps Hopkins, which has received millions of dollars to investigate possible causes of autism, might consider conducting such a study on its own initiative -- particularly now that we have reported Donald T.'s autism improved significantly after his juvenile arthritis was treated with gold salts.
That fact -- related to us in August by Donald's brother in the Mississippi town where they both still live -- does not appear to have made it into public accounts of those early cases. Yet it might mean medical and mental problems went hand-in-hand beginning with the very first case.
It might mean, in short, the evidence was there from the start that in many cases autism is a whole-body illness, which might have implications for both causes and cures.
The 30-year-old autistic man who today is in so much pain from arthritis that he won't stop holding his right arm with his left -- is he the medical heir of Donald T., suffering with juvenile arthritis in 1947? Is it possible the same kind of treatment might help?
Here is the start of an e-mail message that arrived this week from Michael F. Wagnitz, a senior chemist at the University of Wisconsin: "Autism is a term used to describe a condition which affects the immune, gastrointestinal and central nervous system."
Based on our limited, unscientific, anecdotal experience, that makes a lot of sense as a description of many cases of autism.
This ongoing series on the roots and rise of autism welcomes reader comment. E-mail: firstname.lastname@example.org