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August 21, 2006 at 16:09:48

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The Really Big Lie About Autism

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By Evelyn Pringle, Posted by Evelyn Pringle (about the submitter)     Page 2 of 3 page(s)

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She said that it was doubtful that John would ever be able to live independently or hold a job. It was all rather hopeless and I was left pretty much on my own when it came to finding information on autism. So much was said back then about the rareness of the disorder.

We live in a town of 14,000 people and when I read that the autism rate was one in 10,000, I figured that it was unlikely that I would ever find another parent with an autistic child.

Although I taught school for eight years before I was married, I had never heard of a student with autism. This of course was all in the days before the invention of the really big lie, when the truth was still discussed about autism affecting only a small number of kids.

After what seemed a very long stay in grade school, where no professionals had any training or experience with handling kids with autism, starting in the fourth grade, I home schooled John.


Those were the good years. He learned at his own pace. Being a teacher myself, I designed a curriculum that he could work with. Some things he could do with no help, others were like a hopeless mystery.

John took piano, and we were all in 4-H and belonged to a home school social group. We took vacations and John had a paper route, but he was still pretty unresponsive when he was around strangers and he didn't like to go to public places.

When John was fifteen, everything changed. I found a doctor who specialized in developmental disorders. I wanted to learn how to get John to interact more with people.

This was when I got the shock of my life. In the eight years since John's original diagnosis at seven-years-old, the rates for kids with autism had exploded. Suddenly, doctors and educators knew about autism. Kids with autism were everywhere. The doctor's assistant even had two autistic sons of her own.

In fact, I learned that now there was a whole spectrum of autistic disorders and John's was called Asperger's Syndrome.

I'm pretty sure that this was when I was told the really big lie for the first time---that all of the autistic kids were the result of "greater awareness and better diagnosing," and that autistic children used to just "fall through the cracks" or were labeled with other disorders.

It didn't make much sense, but at least I had a lot of company now.

John's doctor had us combing through our family tree trying to find our "autistic relatives" that were labeled with something besides autism. This was also when I first heard of the "autism gene" supposedly responsible for this "inherited condition."

When I was first told that John had Asperger's Syndrome it was such a rush of relief because I assumed that there would be people to help John and school programs for kids like John that were not available when he was diagnosed eight years earlier.

This is when I realized that the really big lie was just that, a really big lie. There was a huge disconnect between the really big lie and the reality of services. If these kids had been always been around, what had the schools done with them?

I mean, it's impossible to ignore a child with autism, they must have had something for them. I was one of the original members of an Asperger's Syndrome parent group at a local hospital and I met so many people just like me struggling with children and nowhere to turn to.

When I first started hearing about the rise in autism cases, I knew immediately that John and others like him were just the tip of a very large iceberg hidden underwater for the moment but not for long.

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10 comments

Educate yourselves.

I am truly amazed at how many people will come out of the woodwork to try and discredit articles such at "The Really Big Lie About Autism." And what is truly amazing are the people such as aspiesmom1 who will go out of their way to make someone elses life even more difficult then it already has been out of pure spite. As for 'Fuzzy Math,' well,.anyone can manipulate numbers anyway they want to make an argument for themselves. The CDC claims this all the time about research that comes out making that possible link between ASD's and thimerosal. But, we can make the same claim about anything they have ever sponsored. I do believe there is a link between the two because of everthing I have been through with my two sons. There is no history of autism, ADD, ADHD, or aspergers anywhere in my family or my wifes family. So it did not make any sense when my oldest started his initial regression and dispayed some autistic like characteristics. The question you have to ask is how a child who is developing normally for two years regress so fast into nothing. If it truly is genetics then the signs should have been there from the begining. If it truly is genetics then you can't reverse the effects and get better. If it truly is genetics you can't just turn the gene on and off when ever you feel like it. So there has to be a different explanation. The explanation is toxins. We live in a toxic environment and by adding the second most toxic substance in the world (a known neurotoxin,..it's true,.look it up) to new borns and infants with developing brains and immune systems is not really doing them any good. In fact it can cause neurodevelopemental delays/problems. And for those of you who don't understand toxins and metals, as you grow older they continue to build in your body and create even more problems. Yes, even possibly adult autism. You just have to ask yourself as well, if we live in a society of such great medical advances (ie: the vaccination program and other preventative medicines) then why are there so many more new diseases? I feel this way because of where my children were, where they went and where they are now in regards to ASD's. We never labeled our children autistic because we know they never were. What they had was acute toxicity derived from the mercury that was in their childhood vaccinations. Once we pulled the toxins from their systems we saw them get better. Will we ever vaccinate again? Never! We do not know what it will do to them. So for all those people out there that say we have no idea what we are talking about, why don't you go out and educate yourselves on these topics. Ever since my oldest son got his diagnosis (4 years ago) I have been educating myself in everything from ASD's, toxicology, genetics and environmental toxins. I live now to make sure my sons stay in their recovered state, to help those whose children have been affected and to help educate those who don't really know the whole story. I respect those who take their adversity and try to help others, and I feel sorry for those who put them down. So try to use this information and educate yourself to help others instead of trying to keep people down. And lastly, I am not anti-vaccine, I am for safe vaccines.

by Dieter (0 articles, 0 quicklinks, 0 diaries, 5 comments) on Monday, Feb 26, 2007 at 11:55:27 AM

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UK supermarkets, including the Wal-Mart unit, ban aspartame

more from The Independent, UK, Martin Hickman, re ASDA (unit of Wal-
Mart Stores) and Marks & Spencer ban of aspartame, MSG, artificial
chemical additives and dyes to prevent ADHD in kids: Murray 2007.05.16

ASDA (unit of Wal-Mart Stores WMT.N) and Marks & Spencer
will join Tesco and also Sainsbury to ban and limit aspartame,
MSG, artificial flavors dyes preservatives additives, trans fats,
salt "nasties" to protect kids from ADHD: leading UK media:
Murray 2007.05.15

combining aspartame and quinoline yellow, or MSG and
brilliant blue, harms nerve cells, eminent C. Vyvyan
Howard et al, 2005 education.guardian.co.uk,
Felicity Lawrence: Murray 2005.12.21

50% UK baby food is now organic -- aspartame or MSG
with food dyes harm nerve cells, CV Howard 3 year study
funded by Lizzy Vann, CEO, Organix Brands,
Children's Food Advisory Service: Murray 2006.01.13

by Rich Murray (0 articles, 0 quicklinks, 1 diaries, 18 comments) on Wednesday, May 16, 2007 at 11:14:41 PM

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The Age of Lies

Nobody in power cares anymore about lives, hearts, or integrity. We have fallen. We now rest in the valley of Greed's lowest common denominator, and are manipulated by everyone from our government to our doctors to our insurance companies. All in the name of continued and larger profits. What a sad time. Thank you for the article.

by Nezua (42 articles, 0 quicklinks, 1 diaries, 93 comments) on Monday, Aug 21, 2006 at 6:04:22 PM

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Perfect

I applaud this article. In my community I proposed to introduce all medical professionals to be licensed to practiccwe by the community with report to people every year aand if complaints aare justified that person is to be banished forever from the community territory. I consider that people like the ones who promote that autism lie are worst possible criminals. Thanks again

by Mark Sashine (82 articles, 20 quicklinks, 279 diaries, 4289 comments [250 recommended, 1 rejected]) on Monday, Aug 21, 2006 at 6:46:57 PM

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Yet more Lies

Quoted from the article: "My son is considered mildly affected with autism now. He is much improved from the hopeless student in the second grade. He is fabulous on a computer, he has his driver's license, he rides horseback and plays the organ and piano. He is great at conversation at home now, but his social skills are still limited in new situations and with strangers. Once he finished school, John became eligible for Social Security disability payments. When my husband took John to apply, the Social Security worker filling out the forms asked, "Why are there all these young people with autism going on disability?" Evidently, she hadn't yet heard the really big lie, being she was so surprised at all the people with autism. My husband told her to get used to it, there were lots more coming, including many who were severely disabled in need of much more help than John. The reaction of the young Social Security worker could be a sign that we're fast approaching a crisis with the really big lie that threatens to expose it to all. Right now, eighty percent of autistic Americans are under the age of 18. This is another thing nobody seems to think about. What happens when one out of every 166 eighteen-year-olds goes on disability for life with autism?" From the sounds of the article, John is doing great - he rides horses, drives a car (something many even mildly afflicted can't handle) and works wonders with a computer. This begs the question - WHY is John on Social Security? And is John's family planning this as his life's "work"? This may well be the source of the SSA employee's query - not where did all these people come from, but why are they going on disability if they can function? Why does everyone assume that every single 1 out of 166 adults with some form of ASD is immediately going to hop on the social security band wagon??? In fact, I know many people, adults and children, who are on the spectrum. Two of them receive benefits. One is a child receiving SSI (which can also help to pay for interventions private insurance won't cover) the other is an adult who suffers from multiple comorbid disorders and so the ASD isn't the sole reason for the benefit payment. Most adults I know who have an ASD (my own husband included) work for a living, at something they can do with the skills they've acquired, just like the rest of us. It may be a little harder for them to find a job position they are comfortable with, and a lot of them put up with more than I even could, but no one I know wants to just sit home and collect a minimal check from the government without putting something forth into the world. They have a lot to offer, particularly multiple skilled people like John. I can't believe he was approved - there are people in much greater need who aren't.

by jpierce (0 articles, 0 quicklinks, 0 diaries, 2 comments) on Tuesday, Aug 22, 2006 at 1:52:28 PM

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Fuzzy Math Among Other Things

To provide an additional example to Aspiemom's comment, I myself am on the spectrum and am very successful in my career of Business Analysis. I have never asked for or received assistance for a disability and I do not have the need to do so for the sake of my Asperger's. To continually say that 1 in 166 kids under 18 will be going on disability when they come of age is such an exaggeration and, to be honest, completely insulting to me and, I'm sure, many of the large population of Autistic adults who have never received assistance. Additionally, I'm unsure as to how the statistics mentioned in the article of the 1 in 80 males was derived. Can you provide more information on this? These are some sample statistics that I calculated myself - they are based on numbers that I might have incorrectly assumed (75/25 for instance), but they shouldn't change too much in the end: If you have a population of 100,000 people (50,000 people are male, 50,000 people are female), and an incident rate of 1 in 166 for that population, then 1 in 166 of all people will have the disorder for a total of approximately 602 people. If this disorder were split evenly among males and females, then 1 in 166 males would have it and 1 in 166 females would have it. If you say that 75% of the people with this are male, then you have a higher incident rate: 75% of the 602 people are male, so 452 of them (roughly). 452/50,000 is .9% of the male population or 1 in 111 men. 25% (females) of the 602 people are female, so 150 of them (roughly). 150/50,000 is .3% of the female population or 1 in every 332 women. Please note that just by cutting your population in half, it doesn't mean that you're doubling the prevalence of the disorder. Finally, more information on this "epidemic" can be found here: click here

by Bel Simmons (0 articles, 0 quicklinks, 0 diaries, 1 comments) on Tuesday, Aug 22, 2006 at 3:20:08 PM

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No Subject Entered

I am 60. I cannot tell you what a relief it was to learn about Asperger's Syndrome in 1997 and immediately recognise it as the source of most of the difficulties in what has been a difficult life. I was officially diagnosed in 2002 when I suffered a bout of the severe depression that has afflicted me from time to time. This article is so full of preposterous assumptions, I hardly know where to start. Twenty years ago, only a handful of researchers had heard of Asperger's, and awareness of autism as a spectrum had yet to emerge. The diagnosis was simply not available. "If these kids had been always been around, what had the schools done with them?" asks your writer. Well, they labeled some "retarded," they called some kids shy, they gave some a hard time for being "difficult" (before the diagnoses of ADHD and the like), they recognised the talents of others and called them "gifted." We were there, all right, just as my father and his father were there with the same traits, symptoms, and difficulties. The "big lie" is that we millions of adults with autistic spectrum disorders don't exist, and frankly I find that offensive. I see them everywhere. Also offensive in the extreme is your assumption that everyone with an ASD is doomed to a life on benefits. What outrageous and insulting nonsense! Often it takes us a little longer to find our place in the world, but more often than not, once we do, we make a contribution well above the average and are highly valued for it. "My son is considered mildly affected with autism now... fabulous on a computer, he has his driver's license, he rides horseback and plays the organ and piano. He is great at conversation at home now, but his social skills are still limited in new situations and with strangers." Sorry, lady, but I'm with the Social Security clerk on this one: why should your son be pushed into welfare dependency by your bizarre notions of what he is and is not capable of? He can drive? Let him get a driving job. Fabulous on a computer? Lots of openings there. He certainly isn't going to improve his social skills sitting around at home with you. The best thing he could do is what I did at age 16: get on the Greyhound, go a long way away, and get a life.

by ASsenior (0 articles, 0 quicklinks, 0 diaries, 1 comments) on Tuesday, Aug 22, 2006 at 4:59:12 PM

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The Scientific Method

Despite that I have very little trust of the CDC and FDA, I am both autistic and a future researcher and so, trusting the Scientific Method, I know that on subjects such as these, I do not state hypothesis as fact before it's tested and verified. I am inclined to believe that an incredible portion of ASD diagnoses are due to better identification, looser criteria, the addition of an entire new disorder adding to the numbers of the Spectrum, and greater media attention and public awareness. Over time I'm sure actual occurrence-rate numbers have gone up just because people keep populating, so the higher-functioning ranges are bound to create more ASD children due to the incredible rates of heritability in the Spectrum. Silicon Valley is an excellent example of this. And this is to be expected with any disorder or condition that doesn't compromise propogation. Lorna Wing back in the 70s, with the realization of a higher proportion of high-functioning individuals in the population, found stats which were much closer to the 1/166 than anyone predicted before and for quite some time after. Other studies have found figures closer to 1/222 after the CDC normative study. All in all, I hypothesize that occurrence rates have very slowly grown with the increase in population size (as would be expected in any population). Diagnosis rates, however, have boomed. Occurrence rates would reflect that actual disorder; diagnosis is simply recognizing it's existence. And BECAUSE I believe in the Scientific Method, I state NOTHING for certain until I test it myself or read good science verifying it repeatedly. I'm not denying that the CDC and FDA wouldn't be prone to fix numbers. I, myself, have little trust in government factions these days. But DESPITE this, I do not state hypothesis as fact. And I recommend the author of this article to do the same if they wish to be taken seriously.

by Sophist (0 articles, 0 quicklinks, 0 diaries, 1 comments) on Tuesday, Aug 22, 2006 at 6:55:09 PM

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Social Security

Last night I sat thinking about this piece. And the more I thought, the angrier I got. I know plenty of folks who are well deserving of receiving ss benefits who have been denied (including my husband's first wife, who died while on the heart/lung transplant list - and the letter denying her appeal for her being healthy enough to work arrived the day of her funeral) and yet it appears that John here is on the dole. I've decided to finally take action. I've emailed a copy of this piece to an interested case worker in a local SSA office there near Chippewa Falls. Something tells me she's not aware of how great John's been doing lately.

by jpierce (0 articles, 0 quicklinks, 0 diaries, 2 comments) on Wednesday, Aug 23, 2006 at 1:12:18 PM

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I was diagnosed with Asperger's at 30 years of age

I was not diagnosed with Asperger's Syndrome until I was 30 years old in 2002. I then set up a social group for people with Asperger's and mild Autism in April 2002. I can assure you that the vast majority of people with Autism (at least in Ireland) were missed as children and are only now being diagnosed. A few weeks ago I met a new member who was very badly affected by autism. His support worker brought him to the meeting. He had very little language, all he could say was "Yes, I see" to everything I said to him. He brought his little cardboard Train Carriage that he made himself, accurate in every detail. Now this is the important thing. This guy was 54 years old and was only diagnosed with autism one week before. The only unusual thing was that he lives independently and he drives a car, a remarkable achievement for someone with such a degree of autism. Stories like this are not rare but are in fact typical. I have met nearly 100 adults with Autism and Asperger's, only a handful were diagnosed as children. I would estimate that 80% of people with an autism spectrum disorders in Ireland (and perhaps elsewhere) are not diagnosed; they are struggling alone, hurting and misunderstood. As a person with mild autism myself, like the other readers here, I find it very hurtful indeed that we are ignored so that others can promote their pseudoscientific theory that the old form of non-verbal, severely affected autism is increasing rather then a broadening of diagnostic criteria, which is the truth. It works against effort of people such I, who are trying to create public awareness that autism is now a much broader and nuanced condition then previously considered just ten years ago.

by David Johnson (0 articles, 0 quicklinks, 0 diaries, 1 comments) on Wednesday, Aug 23, 2006 at 1:56:35 PM

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