Truths About Autism
June 17, 2007 by Kristina Chew, PhD
Filed under Health
The Truth About Autism is the name of an op-ed in today’s San Francisco Chronicle by pediatrician Rahul K. Parikh: He suggests that the truth is that a link between vaccines and autism has been “soundly disproved,” yet parents seek out what might be referred to as their own truth, in doing their own research and in seeking out treatments other than those offered by mainstream medicine. Parikh describes a 9-year-old boy who was diagnosed with Asperger’s Syndrome at the age of 7 (referred to as Andy, which is not the boy’s real name) and notes how the boy’s mother, believing that a vaccine caused this, has turned to biomedical interventions of the kind described in the Defeat Autism Now! (DAN) protocol. Andys mother wished to have her son undergo a number of tests after seeing a “doctor ‘certified’ by Defeat Autism Now to test and treat autistic kids” and came to see Parikh
…..to request a prescription for the tests that her doctor recommended. Because of the lack of evidence to support these tests and treatments, most insurance plans do not cover them, and they are very expensive.
I was worried that what Andy’s mother wanted to buy, for a very high price, was false hope. ………
Then [after questioning the mother about the purpose of the tests] I respected his mother’s wishes and ordered those lab tests that I knew her insurance plan would cover (she chose an outside lab for the others). All of these tests turned out to be normal. The additional tests, which Andy’s family paid for, showed a question of some minor nutritional deficiencies. For this, Andy’s doctor placed him on about a dozen nutritional supplements, some of which cost up to $80 for a one-month supply.
Many will dispute the truth of Parikh’s account (he uses the word “dogma” to describe the views—such as that there is an epidemice of autism—-of autism advocate Rick Rollens and of DAN). One truth is the story Parikh that relates about how then 7-year-old Andy and his mother ended up in his office, in search not of his advice as much as his signature for the tests recommended by the DAN-certified-doctor; Parikh thus emphasizes the experimental nature of such tests and treatments. (And, since I first read the DAN protocol in 1999, the list of treatments has gotten longer; more than a few of these treatments, such as chelation, are prescribed for disorders other than autism.) Parikh notes that Andy’s parents “and many other families with children who are autistic, deserve to make their own choices — choices that medical professionals should support as best we can”: Too often, a parent does not know what to think, when even some Thomas the Tank Engine toys have been found to have lead in them.
A few more truths about autism that might get overlooked amid all the publicity surround the vaccine court trial.
The need for teachers specializing in teaching autistic children is great, as today’s San Bernardino County Sun notes. For many students studying to be teachers, “autism education” means one lecture by a professor, or part of one lecture. A working group is examining credentials for special education teachers in California and
considering recommending expanding the types of credentials that authorize teachers to teach children with autism in special day classes.
UC Riverside faculty are looking at the feasibility of launching a Masters of Education program, planned for 2008, that would focus on autism, [Jan} Blacher [faculty chair of UC Riverside's Graduate School of Education] said. Students in the program would take classes on autism and conduct research related to the disorder, she said.
Says, Sweeney, director of the University Center for Developmental Disabilities at Cal State San Bernardino”‘”My frustration is not what caused [the rise in the prevalence of autism], but now that we’ve got it, what are we going to do about it?’”
The final autism truth I noted here is a sad one that makes me turn around to be sure that Charlie is, indeed, lying on my bed wrapped in his blanket after a bike ride. 7-year-old Benjy Heil has been missing since Thursday evenin; Benjy, who is autistic, was last seen playing in his basement in Wisconsin Rapids, Wisconsin. The June 15 Post Crescent reports that about 100 law enforcement personnel and volunteers have been searching for Benjy.
I’m going to be hopeful for Benjy. The greatest truth about autism that I know is what a great boy my son is and how much he has meant to our lives. I’m pulling for Benjy and his family and those searching for him.
The truth as I see it (and everyone has there own truth) is that when you are no longer cute nobody wants you on any side of any autism argument.
Whether you be by whoevers definition high or low funtioning, verbal or non verbal, amenable or obstreporos unless you are managable and manipulable (unless you mind those proverbial p’s and q’s (nesting bracket here – whatever that means? end nesting bracket) leave space for external bracket) then you ain’t wanted, particularly on the autism hub.
so vituperate away, tis the passion for today, for in what compass can compassion stray,
whatever all that latin say.
Hic in contemptus humanae
Hi Kristina –
“The need for teachers specializing in teaching autistic children is great, as today’s San Bernardino County Sun notes. For many students studying to be teachers, “autism education” means one lecture by a professor, or part of one lecture.”
Why on Earth would the need for autism teachers be any greater now than thirty years ago? There is, after all, no true rise in autism, only more accurate diagnosis. Why would we need any greater level of education than we have always had?
Why shouldn’t we put resources towards areas where they ARE actually documented increases; such as cancer, heart disease, and diabetes? I’m pretty sure that diabetes wasn’t this common thirty years ago; it seems as if sales of insulin would have been much greater, or people would have been dying all over the place.
I, for one, am totally against increased spending on increased autism teaching; we’ve gotten along JUST FINE with one percent of males having autism so far, haven’t we? If we actually need increased spending on autism, shouldn’t we be able to define the cost to our society of one percent of males having autism? As this value is static, i.e., one percent of fifty year old males have autism, providing this information should be simple. Yet for whatever reason (?), autism advocates have yet to do so. The truth can only be that a society where one percent of males have autism can’t be costing us all that much.
- pD
The truth is~ We have special education teachers who specialize in specific areas. Some choose EBD (Emotional Behavior Disorder) focus, some choose LD (learning disorder) focus, other MI (mentally impaired) focus, and the list goes on. We have teachers that specialize in and major in drama, tech ed., art, and the likes to meet the specific needs of students who have a mind and interest in those subjects. Why not have teachers who specialize in Autism? Many of our children with autism don’t fit into an EBD setting nor an MI or even LD setting. Sooo…..
passionlessDrone ~ being a teacher and a parent of a child with autism, I know many special education teachers who are limited in their understanding of autism. If they don’t understand it, they can not teach our children. If there isn’t a need for Autism Teachers, than I am wondering why the state I live in (Minnesota) now offers Masters in Teaching programs for Autism teachers. Our state University, the UofM, and two private schools, Hamline University and St. Thomas, both offer that now in what has been an advocacy effort through our state Autism Society. I am so proud and excited that one of my son’s former teachers is finishing her masters in the U’s program as we speak. It is MUCH more than a lecture. It is an entire degree. Also, if there isn’t a need, then why would a state with top notch education and schools, who rank #1 on the ACT and always in the top 3 would see a need for them? Hmmmmm….
California basically has two credentials, classified as mild/moderate (most people with this credential end up teaching resource classes and kids with mild developmental disabilities) and moderate/severe. My credential is in the latter.
My credential program had inclusion as its model. Time was not spent so much on varying disabilities and which teaching methods worked best for them, but rather how to modify general education curriculum.
Even at the time, I thought that was, at best, a risky business. The group of us in the M/S program was relatively small compared to the M/M program — and miniscule compared to those getting their credentials in general education — and the professors involved were very hands-on. Their stated goal was getting as many of us as possible into jobs in special day classes to “empty” them.
Problem was — they didn’t tell us what to do the rest of the day.
Personally, I believe in inclusion for the majority of the students, if the appropriate supports are there. But the fact of the matter is, I teach in a special day class, and I have to teach them something, and I was ill-prepared (by my credential program) to. Fortunately, I had spent a lotof time tutoring and working in classrooms — that’s what prepared me.
To get back to the point — not once did we have a class on “this is what autism is, and these are the strategies that work best,” or even, “this is what Down syndrome is, this is how it affects X, Y, and Z, and this is what works best.
And again, I’ve babbled on quite a bit — but I hope a teacher’s perspective was helpful. My earlier reference to my “six cents’ worth,” by the way, was a reference to length, rather than perceived value — this comment must be at least a dime!
I had the pleasure of working closely with an EBD (Emotional Behavioral Disorders) teacher who had a strong background in autism as well. We were in synch as a teaching team, and the autistic student in my class benefited greatly from it. Education for everybody truly takes everybody.
I wonder a lot about what Charlie would or would not, or never, have been taught in another day and age. It has been a gargantuan struggle to teach him to read and I am not at all sure that such efforts would or could have been made in the past. The ABA-based teaching that has helped Charlie to learn—academically and in dealing with, for example, anxiety—involves more than new pedagogical techiques. It is part of a belief that a child like Charlie—who, I think, may well have had an MR diagnosis in previous generations—can learn. I don’t think that it should be so costly but (this is my very pragmatic side) as his mother, I have to put resources and even faith behind what seems to help in the here and now.
Not that I’m not always re-examining what I think on this….
I do think I see fewer, older children like Charlie in public—children who cannot talk too well, who (as he was in a restaurant tonight) babble and run back and forth in ways that some deem “inappropriate” for a child in the 4th grade. We’ve no plans of not being out and about so much always with Charlie.
Well lets leave California out of this, and look generally at the need for special education.
To passionless drone, I can tell you historically that the children with the most severe manifestations of autism and other disabilities generally were often not taught at all, What passed for special education was generalised into essentially two categories. Services for those who mentally did not make the grade, and services for those who physically could not attend regular schools. Education in the latter was subsumed by the need for physical attention most often and generally of a lower standard than available in mainstream schools.
As for autism in the other category, well in most schools nobody ever even tried, which is why educational methods for autism were pioneered outside the system.
The rest of us, who went unnoticed in mainstream schools at the so called high funtioning “end” of things, I can vouch for personally, we were undereducated and more often than not failed to reach our potential.
It was not until I was in my forties that I started redressing the balance, and am doing better now in tertiary education with some provision for my particular needs than I ever could have managed back in the 1970’s
What is severely wrong with the system everywhere is the notion that education is something between the ages of 5 and 19 unless one goes on to University.
Autism is a different developmental trajectory, and what is not achieved in that window needs to be achieved in the longer, life long span.
It is transitions into adulthood where most of the system currently breaks down, in Sunny California I would guess as much as in the dull and rainy UK.
As I say in my post, nobody cares much when you have left that childhood stage, the resources such as there are all go in at that time and then vanish, yet we spend more of our lives as adults than as children.
The University of Mary Washington has just rolled out an Autism Education program, and it looked pretty good. If you know folks looking to go into special ed and teach autistic kids, do let them know!
Benjy Heil has been found and it’s not the news we had hoped for.
http://www.wisconsinrapidstribune.com/apps/pbcs.dll/article?AID=/20070620/WRT0101/706200496/1982
Not knowing where else to post this:
US Autism & Asperger Association weekly news
Commentary – CDC Off Center; A Call for CDC’s Dr. Gerberding’s resignation
by Mark R. Geier, MD
The full Senate report is available at:
Just fascinating reading; but I keep taking my supplements everyday before reading this stuff. Just having the Centre for Damage Control resign will not help much. Completely redoing research funding and review so that it is not just part of pharmaceutical advertising…
Completely reworking health values: Doctors and Pharmacorp should profit when the people are healthy; they should pay when people are sick…
Is it possible? Can we prevent secretive societies running CDC and Medicine? Can we devise payment and profits that promote health?
Mr. Wade—might you provide more commentary as to why you are posting this here? Have you been in communication with Dr. Geier?
I believe very much that education and ABA training are facets of recovery from autism that are vital. They both need development, however good they already are.
Equally: nutrition and medicine need research and development to fill in some of the other facets of prevention; treatment and recovery from autism.
Together they can synergise into a faster recovery; with some skill and luck in early timing they may result in a better quality of recovery…?
By carefully listening to Drs Geier on the DAN! Webcast, together with the other scientific reviews of current advances at those conferences, I’ve been able to improve my own Asperger’s even at the age of 66yrs. Many younger children will be able to do much better, won’t they?
The CDC appears to be one coordinating centre for approval of great profits in the medical industries. The central tenet must be that you can’t sell weapons without war and fear of war; neither can you sell drugs; MRI scanners nor cancer irradiation gear without disease and the fear of disease.
I would like to clarify the picture further as it must be possible to make at least ten times more in GNP: cleaning up the the chemical mess created by the industrial revolution, than has ever made by the original industries so far.
Autism is just a bystander in this scene. Nobody has found a way to make real industrial dollars from it. It is, however, a great embarrassment as it throws light on the full range of diseases of oxidative stress; inflammation and immune disorder; from A – Z: Autizm –> Azthma –> Rheumatoid Arthritz.
The clamour to treat autism makes it possible to begin to prevent and treat the “Top Ten” diseases. No war — no spare change to keep the country solvent. So let’s choose our wars more carefully!
I don’t expect to paint this picture very accurately the first time. Please ask for references and I’m sure the members of this blog can do better than I can alone.
Regarding the Geiers’ research, I think it well to read Kathleen Seidel’s research. If I may ask, Mr. Wade, was your diagnosis of Asperger’s recent?
Kathleen Seidel’s research is a good example of why I try to avoid rebuttal of research. It is better to leave that to the professionals: the Rocky Mountain Sheep.
Instead I use Dr de Bono’s 6 Hats and first lay out the research from both sides on a blank white sheet. 25 presentations from DAN! webcasts and Kathleen’s cautions. Second I might start cherry picking the useful looking stuff for my own understanding and treatment…
If I find cautionary notes in Kathleen’s blog I can use them to augment my treatment, can’t I?
If I start head butting arguments I’m likely to end up a discarded Mountain Sheep, or goat! We aspies have below average muscle development…
Nobody during my schooling or quest for treatment of colitis even whispered a word about Asperger’s, so the diagnosis is recent, done from the ARI diagnostic check list. It may not be 100% accurate, but has been helpful in discovering treatment for colitis that works; also in finding detox and supplements that mean I don’t even get excited on reading a rebuttal: just note areas that might profit from further investigation.
I think my Asperger’s is receding with 6 hats; detox & many supplements in synergy.
Very interesting….. So you’re (if I may ask) self-diagnosed?
I thought about my motives for testing for about six months; decided that I did not want to pay a psychologist to tell me that there is no known cause or cure…; decided that the ARI test was put together by professional psychs so that one could not easily self diagnose or bias the test; decided that a perverse wish to be an Asperger’s style Genius would not affect the test; put on my best learned in Japan, “Mind in Neutral” attitude; and took the test as if I was ten years younger: still unaffected by detoxification.
A year later I took the test again as if I was 12 – 18yrs old.
The results were clear enough to be useful so I didn’t waste any more time on them, but did send the forms to ARI for their data base.
I might think of the diagnosis as being 10% influenced by myself — 90% ARI standard.