Skip to comments.The Autism Dilemma
Posted on 10/13/2001 2:30:56 PM PDT by ChemistCat
BACK on September 28, 1993, a group of parents of late-talking children was formed for mutual support, with my help, and grew until there were 55 families, scattered from coast to coast. Some of their children were diagnosed as autistic, though most of these diagnoses would prove over the years to be false.
Eight years later, almost to the day, the 9th Circuit Court of Appeals issued a decision on September 25, 2001 about a little girl in Nevada named Amanda, who had been diagnosed as autistic. That case illustrates the uncertainties and dilemmas involved in the diagnosis and treatment of children as autistic. The legal issue was whether Amanda's parents had been given copies of the evaluations that declared her autistic. By law, the parents have a right to "examine all relevant records," according to the Court of Appeals.
A much bigger and more profound practical problem is the combination of the uncertainties of knowledge about autism and the excessive certainty of the laws and of too many "experts" on the subject. A psychologist who evaluated Amanda with the help of an "Autism Behavior Checklist" found the results to be "mixed." But a speech pathologist involved in the same evaluation, but using a different checklist, declared Amanda to be "severely autistic." Later a physician "confirmed the diagnosis of autism," according to the court, but then another organization that examined her "did not diagnose Amanda as autistic" -- and yet another organization reached the opposite conclusion.
In short, there is no definitive word to this very moment as to whether Amanda is or is not autistic. This is not uncommon. Many parents report conflicting diagnoses as regards autism. As the 9th Circuit decision says: "No single behavior is characteristic of autism and no single known cause is responsible. Perhaps most distressingly, currently there is no cure."
There are lists of things that autistic children do, but many other children who are not autistic do those same things. Amanda, for example, liked to spin herself, as autistic children do -- but so have many other children, including yours truly as a child.
Against this background of troubling uncertainties, there are nevertheless dogmatic certainties proclaimed by various zealots, bureaucrats and movements. One claim is that accurate diagnoses of autism can be made as early as age 2 by "professionals experienced in the diagnostic assessment of young children."
But what percentage of the people who actually diagnose children fall into that exemplary category, and how many inaccurate diagnoses are also made at that age -- or at any other age? Such crucial questions are seldom asked, much less answered.
Nor has there been much attention paid to the bad consequences of wrong diagnoses. Numerous parents have been devastated by diagnoses that turned out to be wrong, and their children's education, self-confidence and social development have suffered as well.
It is also dogma that "early intervention" can only help. Yet Amanda improved after being removed from an early intervention program. So did a little boy in Nebraska who was diagnosed as autistic, but who was removed from an early intervention program after a legal challenge was made. He began to improve greatly, after having retrogressed while in the program.
Other parents have reported similar experiences. Uncertainties can be painful, but bogus certainties can be worse. Despite the difficulties of diagnosing autism, some people are supposed to have cured it. Obviously, nothing is easier than to cure a child of something he never had. Children grow out of many problems, including late talking, spinning themselves, and other behaviors common among autistic children -- and found among other children as well.
Obviously, whatever can be done to help genuinely autistic children should be done. Indeed, concentrating resources on those who are in fact autistic makes more sense than spreading the label and the money to many others.
More important than the financial costs are the human costs of pulling children into the autism dragnet who are in fact not autistic. Not only in my group, but elsewhere, there are children once diagnosed as autistic whom no one would call autistic today. This is not a reason for complacency, but for multiple diagnoses by highly qualified professionals -- and for skepticism toward know-it-alls in an area where science still does not know nearly enough. JWR contributor Thomas Sowell, a fellow at the Hoover Institution, is author of several books, including his latest, Basic Economics: A Citizen's Guide to the Economy.
The autism dilemma
I worked with autistic children once during my summer vacation in college, and it is heart rendering to realize that some of these children could have been helped with steriods or other forms of treatment. Others had a combination of autism and retardation, so probably not.
Due to various studies regarding a connection between autism and early vaccination shots, my wife and I have delayed my daughter's shots a few months after the recommended times.
I don't see him much but when I do I observe him listening to conversations, reacting much as you or I would to the environment and he does word-seach puzzles constantly; he recently has been given access to computer games and has an astounding ability to ace them all. The only thing he doesn't do is talk...and I understand there was a very traumatic situation in his life when he was 12.
Good luck to you.
FYI, ChemistCat, I'm a chemist, too.
Because we lived in another state my parents would have had to make him a ward of the state. For that reason and probably others, they decided against it. Thank God.
It turns out that the very Texas institutions that were recommended were the ones that were so horribly mistreating their patients. The one good thing that Geraldo Rivera did was to expose that situation.
So my brother was raised in a loving home and is now a well-adjusted, but still severely autistic adult. He is completely non verbal. He is my favorite human being. I thank God that he wasn't institutionalized.
He was diagnosed either in the late 40s or early 50s. I'm younger than him, so I'm going by what I've been told rather than memory. I do remember as a teenager and in my 20s I noticed that autism went from being extremely rare to being over diagnosed. Now when I meet autistic children, more often then not, they don't seem autistic to me. That's not to say that they aren't, but they're nothing like my brother.
. I'm very proud of both of them.
He's not able to live on his own, although we have a good program here locally and if there is ever the need, he could probably live in a group home. I hope that that will never be necessary because if anything should ever happen to my parents, he will live with me. I swore a long time ago that as long as I'm alive, my brother will never be institutionalized.
Why the steroids? One of my grandsons is autistic. He's about six now and speaks only occasionally. He's had the benefit of several special programs, but he actually regressed last year over stress in his school. A new teacher this year seems to have him back on the right track. I'd appreciate any information about your child's case.
My grandson has been part of a special study about vaccinations and cod liver oil. Unfortunately, he received the placebo in the study and has just been on the full treatment since January. Although he has improved somewhat, the progress has been minimal. The problems at school and putting him on a gluten free diet set him back enough that it is hard to identify actual improvement.
Dr. Mary Megson of Richmond, VA has done several double blind studies on repairing the damage she thinks 3 in 1 vaccinations do to some children. I heard about her on C-span about a year and half ago during a hearing conducted by Rep. Dan Burton on the subject.
Dan Burton has two autistic grandchildren who he feels were damaged by excessive and premature vaccinations. One of his grandaughters received 10 shots in one day and nearly died. The other was perfectly normal until 15 months after the MMR vacination. She became ill and regressed into autism.
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