The Autism Dilemma

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.

Thomas Sowell
The autism dilemma

http://www.jewishworldreview.com --

My son was diagnosed with autism at age 2 and I didn't believe it; we finally had to deal with it at age 3 when we had to face the fact that his communication was 100% echolalic and he was making eye contact only with me, his mama. Guess we were lucky--got the right specialists and the right intervention in a timely manner, and today he's thriving in a mainstream setting at a Lutheran private elementary school. We expect him to be a taxpayer and to contribute to society. He learned to read before age 2, has always been gifted at math & written communication, and has always been affectionate with his parents & teachers. His autistic symptoms are so improved that few notice them now, but once he was really obviously autistic. He has come so far! I credit early intervention and a course of steroids at age 3 with his recovery. He'll always seem "odd" I guess but I do not know a better or a happier human being than my son, nor anyone so universally loved. I've met enough autistic people by now to know how very fortunate we are. It's usually far more disabling. I am with Sowell on this--diagnosing a malady with such a varied symptomology and no known etiology is akin to casting a horoscope. If you're lucky, the prescriptions will fit. I suspect like ADD &ADHD that this diagnosis is being abused.

Autistic spectrum disorders including PDD, Landau-Kleffner, Asperger's, etc., are now more common than Down Syndrome (perhaps because so many people elect to abort Down babies, while there is no way to know if your unborn child will be autistic.)

Please bump any FReepers you know who have an autistic person in his or her life, if you please.

Thomas Sowell has written many articles on subject over the years, helping many parent, hopefully.

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.

One of two paying jobs I have is as a bookkeeper for a company that serves the MR/DD in their homes. We have one consumer, a very nice young man (30's), diagnosed with Autism at the age of 12. Without boring you with the details I think they've done him great harm with thier "program" which included not much more than learning personal hygiene.

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.

My brother was diagnosed as autistic over 40 years ago. Back then autism was unheard of. Back then people warehoused the autistic, which is exactly what the doctors encouraged my parents to do. They strongly recommended that they institutionalize him in Texas.

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 am not at all amazed that an Asperger's person could go almost to age 40 without a diagnosis--and largely succeed anyway! My boy probably fits the Asperger's profile better than any other except possibly hyperlexia (a term that applies more to a set of symptoms than to an overall diagnosis.) His memory and concentration are astonishing. I wish I had those talents. I would NOT be struggling with Organic II if I did! (To be fair, I'm not using my time terribly well since 9/11.)

How does your brother live now? Does he live alone, in a group setting of some kind, or with family members? I am glad he has a brother who loves him!!! I have urged other parents who have a firstborn with autism or other disorders not to fear having more children (unless there's a clear genetic reason to avoid childbearing.) I am very glad my son has two sisters. I think a LARGE part of my son's recovery is due to having his slightly younger sister constantly pushing him into social interaction. I think normal behavioral role models are vital if the child can be reached. When my husband and I are gone, Ricky will still have family support. I think he will need, at the very least, someone to monitor his financial affairs and keep him from being ripped off. I am positive now that he will be able to hold a job. He is positive of more than that. He has already selected his future wife, plans to marry her at age 24, and has all five of his future children named and implanted with personalities. Quite a breakthrough for a child who did absolutely no make-believe until after his ninth birthday! (BTW, he has good taste, too. I really like the young lady he has decided he will marry, and she's been very tolerant of his unabashed public declarations of his betrothal!)

I have an autistic grandson who is in his first year of High School. His mother wouldn't take no for an answer and has pushed the school system as he has matured and there have been several programs instigated for auststics by her perserverance. This is the first year they have a full progam for autistics in the Garland, Texas Indepent School District.

. I'm very proud of both of them.

My brother now lives with my parents. He stays with me two nights a week, in order to give my parents some "time off."

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.

I didn't know much about autism before my son was diagnosed. I've wondered about the vaccination connection myself. I don't think it has been investigated in an unbiased, scientific way. I have an autoimmune disease and there are questions about vaccination being a contributory factor for these diseases too. Still: if immunizations cause autism, they cause less misery in aggregate than typhoid, tetanus, polio, mumps, measles, smallpox....

I think the schedule of immunizations may prove as significant as anything else. They dump a LOT of things all together into babies with immature immune systems.

a course of steroids at age 3

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.

I don't think it has been investigated in an unbiased, scientific way...

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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