Autism: “An Epidemic of Fairly Recent Origin”

On July 5th, an article in the Boston Globe by Carey Goldberg gave us some frightening information. Although the title, “With rise in autism, programs strained,” didn’t seem too alarming, the facts presented should have gotten everyone’s attention. We were told that as more and more children are being diagnosed with autism, we’re desperately behind in providing services.

Goldberg wrote, “A decade ago, it took a few months to get a child into Melmark New England, a special school largely for children with autism. Now, the wait can be five years. Boston-area parents, worried their child may be autistic, routinely face delays as long as nine months to confirm the diagnosis.”

These waiting lists indicate the explosion in the number of children with autism. “Statewide, the number of schoolchildren diagnosed with autism has nearly doubled over the last five years, from 4,080 to 7,521, according to soon-to-be-published data from the Department of Education.”

A number of experts were cited. Dr. Margaret Bauman, director at LADDERS, a Wellesley autism clinic, noted that LADDERS has had to close their doors to new patients and she stated, “We’re backed up well over a year here, and other clinics are struggling the same way,”

Rita Gardner, executive director of Melmark, in Andover was quoted saying, “Autism programs are faced with enormous needs and no one feels like we have enough programs to meet the up-and-coming numbers of children. I would argue that this is one of our biggest public health crises in this country.”

Rafael Castro, an autism specialist at Children’s Evaluation Center in Newton, told about families relocating in school districts that provide the necessary services.

Psychologist Karen Levine, clinical director of autism at Cambridge Health Alliance commented that there are “many families embroiled in battles with their school systems for more services.”

Why is all this happening?

Goldberg explained, “Nationwide, federal health authorities say that about one in every 150 children now has some form of autism, a sharp increase over past estimates. The rates vary from state to state for unclear reasons; Massachusetts has now reached a total of 1 in every 130 schoolchildren.”

Something affecting one in every 130 schoolchildren should have lots of people seriously concerned. Unfortunately, officials at the Centers for Disease Control and Prevention don’t seem to have taken much notice of the skyrocketing number of children with autism everywhere. While Carey Goldberg noted that health officials can give us the current rate for autism, she didn’t mention what they’re doing about it.

According to the Centers for Disease Control and Prevention, we’ve always had all these disabled kids in need of services, their disorder just wasn’t recognized as autism. The CDC describes all the autism as merely the result of “better diagnosing” and “greater awareness” on the part of doctors and no real cause for concern. It seems that one in every 130 children in Massachusetts has always been autistic. Goldberg touched on the topic when she said, ‘Some debate lingers about whether the sharp rise in autism rates is real or simply reflects better detection.”

Tell that to the countless parents waiting years for services. If these affected children have always been here, what did we do with them? It’s a little hard to miss an autistic child, even a mildly affected one. We would have had to provide help for their special needs even if they didn’t have the label “autistic.”

The Boston Globe article should get people wondering about several huge issues. First of all, why are we always talking about children with autism? The CDC statistics of one in every 150 nationally refers to studies of eight years olds, not eighty year olds. If autism hasn’t increased as officials never tire of telling us, then where are the older adults with autism? Why isn’t there even one study that has been able to find the one in 150 thirty, fifty, and seventy year olds with autism who were misdiagnosed in the past, before all the “better diagnosing” we presently enjoy? Thousands and thousands of parents of autistic children desperate about their future would like to know. Where are they living and what are they doing? No one seems willing to look for them.

What’s going to happen in the future?

One big question looms out there: How we will pay for all these children disabled with autism? Carey Goldberg talked a little about the financial aspects and noted that the costs are ever increasing. “The Legislature is recognizing the need: Starting in fiscal year 2006, it gave the state Division on Autism its own line item in the budget, and in the pending budget, allocates $3.2 million to the division, up from $3 million in the last fiscal year.”

Actually, this is nothing compared to the future cost of autism. Research by Michael Ganz at Harvard makes a chilling prediction of the future cost to our society as more and more autistic kids become autistic adults. Ganz reported, “It can cost about $3.2 million to take care of an autistic person over his or her lifetime. Caring for all people with autism over their lifetimes costs an estimated $35 billion per year.”

The Ganz findings are felt by others to be a gross underestimate of the eventual autism price tag. Research from Lifespire, an organization dedicated to helping individuals with developmental disabilities, puts the eventual estimated lifetime cost for one autistic individual at $10.125 million. This is based on an annual cost of $225,000 per person with a life expectancy of 66 years.

With numbers like these circulating out there, clearly the problems with meeting needs of children with autism will be dwarfed by the enormous burden of providing support and care for an overwhelming number of autistic adults in the next five to ten years as more and more of them age out of childhood.

For a long time I’ve wondered if anyone with a pocket calculator somewhere was adding things up. Every time I’ve tried to come up with figures, I’m simply shocked at what this generation of affected children is going to cost the American taxpayers.

Someone sent me a copy of a letter written last November by the Attorney General of Wisconsin, who at the time was Peggy Lautenschlager. The letter was addressed to U.S. Senator Herb Kohl from Wisconsin. It seems the Attorney General had been reading the newspapers and hearing about the statistics on autism.

Newspapers have occasionally covered the exploding numbers. Several months ago, the Green Bay Press Gazette reported, “Fourteen years ago, Wisconsin school districts identified 200 children in their ranks with autism. Today, there are at least 200 students in the Green Bay School District alone. In December 2005 (the most recent numbers available), DPI identified 5,085 students in the state with an autism spectrum disorder.”

Those figures have got to be getting notice, especially if those numbers are multiplied by the estimates of lifetime care. In her letter to Senator Kohl, Lautenschlager addressed the autism epidemic as an epidemic. “Although some dispute the characterization, in my view it is appropriate to describe the dramatic rise of those diagnosed with autism as an epidemic of fairly recent origin. How else can one explain its prevalence among our children and comparative absence in our adult population?”

Calling autism “an epidemic of fairly recent origin” is a clear sign that Lautenschlager was not swayed by the “better diagnosing” claim of federal health officials. In addition, she urged Kohl to vote for the Combating Autism Act, then under consideration in the Senate.

The Wisconsin Attorney General further told Kohl, “Despite efforts being made in our schools, communities and through private sector and non-profit organizations dedicated to improving the lives of autistic children and their families, as a state and a nation we have failed to address comprehensively the most obvious question this epidemic presents: its cause.”

Lautenschalger pointed to the need to support H.R. 5940, a bill that would require the NIH to conduct a comprehensive study regarding the relationship between vaccines or vaccine components and autism. She was concerned because “that bill also was referred to committee, and has seen no further action.” She wrote, “Action is needed.”

The controversy over vaccines, especially ones with mercury, was definitely a critical factor for Lautenschalger in addressing autism. She wrote, “As Attorney General of Wisconsin, I have sought approval from the Governor to gain the assistance of needed experts and outside counsel to explore legal means of forcing the federal government to undertake the type of testing needed to explain the cause or causes of autism. My request was denied.” Evidently, Wisconsin Governor Jim Doyle didn’t share the Attorney General’s concern over the number of disabled children overwhelming state schools.

Although the U.S. Senate passed the Combating Autism Act by unanimous consent last December, the funding still hasn’t been provided. H.R. 5940 was never acted on and nothing is known concerning how or if Senator Kohl personally responded to Lautenschlager’s letter.

So where is all this leading?

When are elected officials going to start to honestly address autism as a crisis? With autism straining education budgets, how long can we keep pretending that something isn’t seriously wrong with more and more of our children and no one can reasonably tell us why?

I can answer those questions. There won’t be a real demand to find the cause of the explosion in autism until we start to go broke paying for it. Within the next five to ten years, we’ll be seeing these children with autism become adults with autism, dependent on the taxpayers for their support and care. When one in every 150 eighteen year olds in the US, including one in every 94 boys, isn’t going on to school, getting a job, or going into the military, but going on disability for life with autism, the reality of this disaster will be obvious to all.

Attorney General Lautenschlager ended her appeal to Senator Kohl by saying, “Nonetheless, I am hopeful that Members of Congress will appreciate the fiscal, societal and medical problems autism presents in our nation, and take immediate steps toward real solutions to these problems. These very special children, their families, and all who have a stake in our future are counting on you.” It seems our legislators have yet to realize the full impact so many disabled children will have on this nation or to understand the extent of the suffering that countless families endure.

Bobbie Manning of A-CHAMP put it this way, “Congress and state legislatures always wait for a catastrophe to occur before they finally realize their ethical and moral responsibility to the public. Even with all news reports, they continue to act like these kids don’t exist, but the tsunami is rapidly approaching. If schools systems are struggling to pay for the services for autistic children today, how will the states, and you the taxpayers, pay for all the adults with autism later? How many more children have to suffer before our Congress investigates and reacts to this public health disaster? And what will be their excuse for not reacting sooner?”

The words of Laura Bono of the National Autism Association are a grim forecast for the future: “As those children reach adulthood, the US is ill-equipped to care for them. Not only do we not have enough services for adults now, the light at the end of the tunnel is a train. Frankly, we don’t know what we’re going to do.”

Anne McElroy Dachel of Chippewa Falls, WI is a member of A-CHAMP (Advocates for Children's Health Affected by Mercury Poisoning) and the National Autism Association (NAA). She can be reached at: amdachel@msn.com. Read other articles by Anne, or visit Anne's website.

46 comments on this article so far ...

Comments RSS feed

  1. Eric Patton said on July 7th, 2007 at 9:33am #

    Another victory for capitalism.

  2. Mike said on July 7th, 2007 at 9:37am #

    Too bad the NY Times, Washington Post, CNN or any other large news organization can’t find writers as good as this!

  3. Kristina Chew said on July 7th, 2007 at 10:03am #

    Any discussion about a so-called “autism epidemic” ought also consider the changes in the diagnostic criteria for autism and our society’s growing understanding of autism, as in the work of anthropologist Roy Richard Grinker (Unstrange Minds: Remapping the World of Autism) and Paul Shattuck.

    http://www.autismvox.com/what-if-there-is-no-autism-epidemic/

    http://www.autismvox.com/vaccine-court-the-epidemic-and-autism-education/

  4. John said on July 7th, 2007 at 1:47pm #

    Since schools started getting extra money for kids with Autism, there has been a sharp increase in the number of kids diagnosed with Autism. Surprise!!

    If schools got extra money for left-handed children, I predict the number of left-handed children reported would also rise.

  5. Mike said on July 7th, 2007 at 4:36pm #

    John and Kristina, Have you ever met a child with autism?

  6. Les said on July 7th, 2007 at 11:59pm #

    Older paternal age and older age of the mother’s father at her birth are responsible for the increase in autism. As generations succeed each other there is more autoimmune disease, more autism, more Alzheimer’s because no one has told the public how the best ages for men to father babies ends by 32-33 and is safest between 23-30. The certainly is a male biological clock over the generations when it comes to genetic disorders of all kinds including many cancers.

  7. Keith said on July 8th, 2007 at 12:09am #

    Grinker and Shattuck, you have to be kidding me!
    What did we do with all these children when we called them something else? If Autism is simply expanded and improved diagnostics, it would not explain the exploding numbers overwhelming our schools. If Autism has always existed, it would not matter what we called it, the schools would be clearly and adequately equipped to handle the numbers of children who need special classrooms, who are unable to learn in typical settings, who need one-on-one assistance and care.
    Autism is not a skin rash where one rash could be mistaken for another. Autism is a devastating life-long disability that make most unable to function without assistance and that will continue into adulthood. Even many ‘so-called’ high functioning Autistics (Aspergers) will not be able to live independently. Missing Autism is like missing a Grand-Mal seizure, just didn’t and does not happen. I do not know a single school that gets more money for Autism than any other disability diagnosis. But our schools are overwhelmed by the sheer numbers. A 25 year tenured special education administrator recently told me that the increase in Autism, schizophrenia, and bi-polar disorders in children is slowly making them unable to function as educators, the numbers are so overwhelming. For the first 15 years of her career, she never saw one single Autistic child, or one she would now look back on and label as Autistic. Now she is dealing with, well in her words “in the 100′s”. She also stated that if the numbers continue as they have, she believes she could see the day when the disabled outnumber the typical, before she retires. Ann Dachel is correct, and if we don’t wake up and do something soon, the outcome will be devastating, not just to the innocent families any more, but to our entire nation. If only Autism were as benign a condition as left-handedness. There really wouldn’t be an issue now would there?

  8. Lisa Rudy said on July 8th, 2007 at 4:11am #

    You write: There won’t be a real demand to find the cause of the explosion in autism until we start to go broke paying for it. Within the next five to ten years, we’ll be seeing these children with autism become adults with autism, dependent on the taxpayers for their support and care.

    My experience so far has been that there is GREAT demand someone to find the cause. AutismSpeaks dedicates the vast majority of their significant money and influence to just that question. Money is available through the NIH for causative research. It is incredibly difficult to get close to answers, in part because we are looking at a vast spectrum of social and developmental differences as well as a huge variety of physical and sensory symptoms. My personal belief is that there are many disorders, some new and some not-so-new, which are now being lumped under the “autism spectrum” umbrella – and they probably each have different causes.

    Meanwhile, I think we as a society are giving short shrift to the very large group of kids and adults with high functioning autism and asperger syndrome. These are the folks who, with appropriate educaiton, mentorship, support, and job opportunities, could not only be gainfully employed but could be offering so very, very much to our society.

    Thanks for your important article!
    Lisa Rudy
    http://www.autism.about.com

  9. Mike said on July 8th, 2007 at 4:25am #

    Les, There was a poll conducted on an autism discussion group with over 5,000 members. Asked what the age of the father was of your child with autism, 90% reported less than 30.

  10. Tim Kasemodel said on July 8th, 2007 at 7:36am #

    I asked Richard Grinker a simple question when he spoke in Minnesota recently: In 2006, the MN Dept. of Ed. reports 406 seventeen year olds and 801 nine year olds as having an autism diagnosis. If it is such better diagnosing and the rates have never truly risen, why, if having had 8 extra years to do so, are these numbers not the same?

    He did not answer the question.

    Above, John mentions funding increases. First of all, funding is based on need; it is not a lottery – it does not just show up and then they go out to find the kids to spend it on. Isn’t it funny how parent’s stories and their beliefs about a link to vaccines are passed off as anectdotal and coincidental, while people spewing silly ideas like “Since schools started getting extra money for kids with Autism, there has been a sharp increase in the number of kids diagnosed with Autism” think anyone could possibly take them seriously?

    Media reports of autism’s causes such as too much TV, older dads, geeks get lucky, etc., get attention over more serious research into the cause of autism much like Paris Hilton getting coverage over all the misdeeds going on in the Bush Administration. The media powers want to keep us all like mushrooms – keep us in the dark and feed us bullshit.

    Wonderful people like Anne Dachel are doing something to change all that. Thank you Anne Dachel.

    Tim Kasemodel
    Wayzata, MN

  11. John said on July 8th, 2007 at 9:46am #

    Mike, my gandfather, father, myself, my sister, and my son all have Aspergers. Does that answer your question?

  12. sharon said on July 8th, 2007 at 11:59am #

    Why the anxiety to believe, without basis, that autism is caused by older dads, TV watching, etc., while there is a great deal of basis for linking rising autism rates to vaccinations? The fact that autism is virtually nonexistent in unvaccinated populations is pretty compelling.

    I am not understanding the denial.

    When my kids were young children, beginning over 20 years ago, I was asked to sign a paper stating that I understood that vaccinating them could result in injury, disability, or death, and releasing the clinic from liability. I told the nurse I would have to think about that one and went home to do some research, before going ahead with the vaccinations for my kids.

    I discovered a several of things, one of which is that the vaccinations are mostly unnecessary and some have been statistically shown to be more likely to cause injury or death than the disease they are intended to prevent. Some diseases, such as polio, would be much more effectively addressed by public sanitation. Others, such as measles, mumps, rubella, and chickenpox, are illnesses that are easily managed with ordinary home care–as they were in my generation (back when we all had all of these illnesses)–and could probably be most beneficially addressed by promoting good nutrition. Tetanus is an illness that few adults are vaccinated against, and which seems to be a non-issue among adults. Why the anxiety to vaccinate children against it? Diphtheria has been easily treatable since the advent of antibiotics. Pertussis–whooping cough–prior to the availability of a vaccine for it, was a common and usually mild childhood illness, usually no more dangerous than measles, mumps, rubella, or chicken pox. I had whooping cough as a child–along with everyone else. While pertussis can be a dangerous life-threatening ailment, the vaccine for it has been shown to be extremely dangerous, and more likely to cause injury or death than the illness itself.

    It was mainly the danger posed by the pertussis vaccine that decided me against vaccinating my children. The usefulness of the other vaccines could be fairly easily dismissed; with the exception of polio, they were simply frivolous. Plus there is a good argument that children’s immune systems are strengthened by these early challenges to their immune systems, and help protect children from other, more serious illnesses, as well as allergies, later in life.

    Refusing the polio vaccine was something of a worry, even though polio is not much of a problem where there is safe drinking water, where you have no open sewers in your neighborhood, and provided your kids will not be swimming in water polluted by raw sewage. This can be problematic, if your family enjoys the outdoors. I believe the polio epidemics of former times had a great deal to do with the generally poor public sanitation. When I was a child, people’s toilets flushed into a ditch dug for that purpose. The ditch ran to the side of the road, or the nearest creek. When it rained, you could have raw sewage all over the place. Still, polio, back when it was a problem, was usually a minor flu-like ailment that went undiagnosed as polio. Once again, the protective factor was probably good nutrition.

    The biggest danger from polio to unvaccinated kids is through contact with recently vaccinated kids who received the live Sabin vaccine, which may have mutated to a more virulent form in their systems. Since children’s hygiene is always problematic, I could see a danger there. But I finally decided against any vaccines for my kids, on the grounds that they all seemed to be pretty much a crock–and sometimes a dangerous crock.

    It is interesting that, in my rather extensive researches (more than 20 years ago) on the dangers of vaccines, I never saw so much as a whisper about the presence of mercury-based preservatives in the vaccines. Must have been a pretty well kept secret.

    What I did encounter was tremendous resistance to my decision not to vaccinate. I had a hard battle with the schools, when my oldest started kindergarten. Back when I was just reading up on the subject, one public librarian became extremely angry simply because I was requesting literature that opposed vaccinations. She made some angrily disparaging comments about my “notions,” and refused to help me find information. I spoke to her supervisor, and that resolved the problem. But I learned that apparently you are not supposed to ask too many questions about certain “sacred cow” issues.

    What with the recent publicity about mercury-based preservatives and the link between vaccines and autism, you can bet I feel vindicated.

    Who are these people who are so anxious to deny this link? What do they fear? Do they work for the medical establishment or the pharmaceutical companies? Why are they so unwilling to question the medical establishment or the pharmaceutical companies? Especially when both notoriously do so much harm?

    I wonder if some of these people–like the school nurses I spent so much time arguing with–have been the victims of rather too diligent indoctrination into unquestioning faith in the medical establishment and the pharmaceutical industry. Question this, and you are questioning their religion–more than their religion, really. You are calling into question the benignity of every institution of our society, even its whole basis. If you can’t trust the authorities, whom many regard as godlike in their omniscience (they sure are omnipresent), if you can no longer believe that they are benign, where does that leave you? Your whole world, along with all of your most basic assumptions, falls apart.

    I think that’s where these people are really coming from: To admit such a possibility would force them to confront something unimaginably frightening; namely, the society and its institutions are not benign; their primary–their sole–interest is profit; they will maim and kill for it. You are not exempt. You are not their pet. They will maim and kill your kids for profit, and they will diligently train and dupe you into being their assistant and confederate in maiming and killing both other people’s children–and your own.

  13. Stan said on July 8th, 2007 at 12:45pm #

    Thanks, Sharon, for your input. Your research got you pretty much where mine has, too. Simply put: We have not been told the truth about the full extent of the downside of vaccines for various reasons, among them the ‘sacred cow’ syndrome you mention – We’re the experts; just do as we say. It’s the new religion of our secular age. But fortunately there are some honest members of the medical profession out there, too – and allied professions. Take Dr Boyd Haley, a chemist/toxicologist, who is doing his best to report on studies particularly involving thimerosal, but also other ingredients in vaccines – and with their immune-system-suppressant effect on the body, how they interact adversely with antibiotics as well. All in all: a sorry story. But the truth will out. More’s the pity that it took so many ASD kids to bring some focused light on this subject. Some consolation, at least, to those kids, and their sorely put-upon parents.

  14. sharon said on July 8th, 2007 at 4:33pm #

    If thimerosal in vaccines (thanks, Stan; I avoided this word because I couldn’t remember how to spell it) is indeed responsible for the dramatic increase in autism, the explanation for the quote, “The rates vary from state to state for unclear reasons; Massachusetts has now reached a total of 1 in every 130 schoolchildren,” may not be so difficult to figure out.

    Fish–especially tuna–are now heavily contaminated with mercury. In some coastal areas, such Massachusetts, fish may figure a bit more prominently in the average diet.

    In some parts of the country, a large proportion of the population opts not to vaccinate–often for religious reasons. States with large Mennonite, Amish, Christian Scientist, and Jehovah’s Witness populations would likely have lower rates of autism, as would states that do not make it quite so difficult for parents to refuse vaccination for their kids.

    I lived in Kansas when my kids were young children, and Kansas law requires that the exemption from vaccination be based on religious belief. It does not require active membership in a church that opposes vaccination. My reasons for choosing not to vaccinate were not specifically religious–unless you feel that exposing your children to harm is against your religion–hence the need to fight World War III to get my unvaccinated kids in school.

    The schools demanded proof of membership to one of the “exempt” churches. I countered that Kansas law did not require membership. When the school nurse asked me, “What is your religion?” I replied, “You can’t ask me that.” The school relented.

    In Missouri, where my kids attended school when they were older, the law requires only that you sign a statement that you “object” to vaccines–with no requirement to provide a reason. Most Missouri schools seem to have the exemption statements on hand and ready for you to sign.

    If anyone wants to look for reasons for the regional differences in the rate of autism, the laws, the proportion of the population that refuses vaccination, and the predominance of fish in the local diet would be good places to start.

  15. nhokkanen said on July 8th, 2007 at 5:53pm #

    Truth is, ever since schools started getting more money for autism services, they kept getting more affected kids and used up the funds. There’s not enough money so parents find themselves forced to homeschool.

    I will never cease to be amazed at attempts by the grossly uninformed to wish away the increase of children needing extra attention in school. Not everyone is blessed with “Autism Lite.”

    Wouldn’t it be grand if all the new autism diagnoses were children with Asperger’s or high-functioning autism, able to articulately post to bulletin boards. But too many of the new wave are kids who can’t speak, have problems integrating sight and sound, can’t handle skin sensations, have vestibular and motor dysfunction, have chronic diarrhea, asthma, allergies, autoimmune illnesses, etc. etc. etc.

    The problem is not teenagers and adults who wear strange clothes and make unfunny jokes. These younger kids need 24/7 assistance to meet their basic life needs, and prevent accidents and death.

  16. Jim said on July 8th, 2007 at 6:13pm #

    Population in the USA-300,000,000. 1 of 150 Autistic (conservative; new study in UK suggests 1-58) Has anyone identified what must be 20,000,000 Autistic people if the “authorities” are correct that they have been misdiagnosed until recently? Do we actually have 20 MILLION people with autistic characteristics? Ridiculous!!!!

  17. Stan said on July 9th, 2007 at 10:01am #

    Sharon,
    Some states where the figures for ASD are higher have other environmental influences, like pharmaceutical companies and major industries, but there is a common denominator: heavy metals. And arguably the worst of the lot: mercury. Which not only causes the Minimal Brain Disorder spectrum including ASD, but does a lot of other damage. Including inhibiting the neurotransmitter serotonin. One result of which is: depression.
    Many of these brain conditions afflicting the public these days are interrelated. the bottom line: a major need to clean up our environmental act. Not just get the thimerosal out of the vaccines (it’s still in flu vaccines). But yes: fish, esp. the larger fish, are to be avoided. And vaccines certainly not pumped into newborns, also thereby bypassing the normal routes for the body’s dealing with assaults. As I said: it’s not just the thimerosal in the shots that is the problem.
    The key problem is short-sighted experts.

  18. qchan63 said on July 9th, 2007 at 12:52pm #

    Mike,

    If you had bothered to follow the links Kristina provided, you would know that not only has she met an autistic child, she HAS an autistic child.

  19. Lin said on July 9th, 2007 at 7:43pm #

    This is a very well written piece. We are very fortunate to have a talent such as Anne amongst us. I for one (of many) an m grateful to her.

    And…it couldn’t be the mercury in the form of thimerosal being injected into pregnant women and infants. Oh, no. It is (mercury) ONLY the second deadliest eliment on Earth after all!!! HELLO????????
    Lin,
    Mother of a mercury toxic child.

  20. christschool said on July 11th, 2007 at 2:19am #

    I find it ironic that a website named dissident voice would publish an article by a woman who represents an oppressive organization as viewed by the majority of autistic people. Epidemic rhetoric and fear mongering have long historical consequences for my people. Notice how none of the quoted people in this article included autistic people? Anne, how many autistic people work at A-Champ? Why did you not include voices of autistic people in your article talking about us? Comments to this blog like calling us “damaged”, “mercury toxic” etc is very demeaning, not to mention utterly without scientific merit as is now playing out for the world to see in the Autism Omnibus Proceedings. We are not “affected” by autism, we are “affected” by the way society views our autism and treats autistic people. My autism is neither a “gift” nor a burden. It’s simply who I am.

    It is time for editors, especially those that purport to support social justice, to insist that when a “group of people” is being discussed, to make sure they include the “voices” of the group being labeled and discussed.

    “Nothing about us, without us”! is a common slogan of Disability Rights Activists and I believe its relevent to this discussion.

  21. Minnie said on July 11th, 2007 at 9:10am #

    Why is being “mercury-toxic” demeaning? It’s not like saying “you’re ugly and your mother dresses you funny”. It’s stating a person carries a high mercury load. You either have a low mercury burden or a high mercury burden in this world – it’s stating a fact, not an opinion.

  22. JB Handley said on July 11th, 2007 at 9:15am #

    Christschool:

    Aren’t you the guy who makes the creepy YouTube movies?

    Perhaps you should get off your high horse and realize that most of the kids caught up in the epidemic we are dealing with will never be able to put together words the way you just have. Before you treat our kids like your brothers in arms, you may want to take a lcoser look at what we parents are actually dealing with.

    The blindspot of NDs like you is that you think we parents are concerned because our kids are a bit different than the average. Nothing could be farther from the truth. We’re concerned because our children are not talking, have no life skills, require daily care, and many of us fear that our kids will need lifelong support.

    When we read about adults who calim to be “autisic” and think they are somehow speaking for our children, most of us roll our eyes and say:

    “What I wouldn’t give to have a fully literate child, capable of writing fully formed sentences and arguing on a blog.”

    Christschool, when it comes to our kids, you have no idea what you are talking about.

    JB Handley

  23. Lin said on July 11th, 2007 at 9:18am #

    In response to christschool:
    I agree; your voices and opinion matter significantly. Speak out and speak up, it is your civil right. However, this does not change the FACT that my son and many countless others with the autism diagnosis have mercury poisoning. Opening his lab results, seeing the mercury level run off the page and reading MERCURY TOXICITY in black and white was a painful experience I’ll not forget. I can’t. To do so would not be justifiable to our son, who did nothing to deserve being poisoned to the level of brain damage. It is unconsciousable this has been allowed to happen to him and all the others. It is unthinkable and shameful that it continues to happen. It is out of the love for our son that we march on and speak out as he, as yet, is unable to speak out for himself.
    Lin
    Sam’s MAMA (Mom on A Mission for Autism)

  24. Erik Nanstiel said on July 11th, 2007 at 9:28am #

    to Kent (christschool) Adams,
    Your “people?” Who, Americans? New Englanders? You act like autistics are citizens of some sovereign nation. It’s a developmental disorder. Yes, I said “DISORDER.” One that is treatable if caught early enough. And correcting a child’s biochemistry and giving them life skills through therapies such as ABA is probably a form of genocide in your warped view, isn’t it? Go home, Kent.

  25. Mike said on July 11th, 2007 at 9:56am #

    John, So you, pops and gramps are all autistic. It’s great to meet an autistic person who can read and write, something my child can not do (or talk). Why do you guys walk on your toes and flap your hands? Why do you stay awake all night scolding? What’s with rubbing fecal matter all over everything? Why do you run out in front of moving cars and trucks? Why won’t you let anyone touch you? Why are you always so sick? Why do you destroy everthing in the house? Why do you take all the pictures off the walls and break them? I have a hundred more questions after you answer these.

  26. Tim Kasemodel said on July 11th, 2007 at 10:53am #

    I find it ironic that Kent Adams is so proud of his autism yet never signs his own name.

    How many autistic people work at A-Champ? What? The good folks at A-Champ represent children who are much more severly affected by their autism than others like Kent. A-Champ represents those who have been affected by mercury poisoning. If any articulate autistic wants to help they would be welcomed with open arms.

    As for asking Anne Dachel to include the “voices” of the group being labeled and discussed, Kent is missing the point. She writes for those kids like mine who have no voice, and I thank God every day that she does. While Kent has every right to write in support of his type of autism, Ms. Dachel writes for the rest of us, and I wish Kent would stop trying to include my child in his idea of what it is to be autistic.

    Tim Kasemodel
    Wayzata, MN

  27. christschool said on July 11th, 2007 at 3:33pm #

    Tim, JB and Eric,

    I hope you’ve been listening and reading the transcripts of the Autism Omnibus Hearing.

    JB, it pains me that another parent can say with such certainty what their child will “never be able to do”. NO parent should ever say such a thing.

    It also pains me to read how people have such low expectations for their children. I hope you never reveal those thoughts to your children and that they never come across such words by their fathers and mothers on the internet in the future.

    I want my Autistic Disordered child, who will one day read, who will one day come across my words to know that Daddy loves who “he” is, that Daddy will never ever betray his dignity which is his birth right.

    Have a good day JB, Eric and Tim.

    CS
    “Self love is an act of definance to some in society” -Malcom X

  28. JB Handley said on July 11th, 2007 at 3:41pm #

    Christschool:

    How dare you infer that you have any idea what my hopes are for my child or what sort of message I send him!!

    For your information, my son is talking (now, hundereds of words), reading, socializing, and attending pre-school and I have extremely high hopes for him to lead a great life. I credit all of his gains to biomedical treatment.

    None of that changes the fact that I have met many children in their teens who are non-verbal and struggling. To imply that the parents are some how responsible for that in any way is wrong and conjures up memories of refrigerator moms.

    You are way out of line Christschool, and you’d be best served to keep your nose out of my house, as you have no idea what you are talking about when it comes to my son.

    JB Handley

  29. Erik Nanstiel said on July 11th, 2007 at 3:49pm #

    Kent, you don’t give these biomed parents (such as myself) nearly enough credit for how much we love our children. Tell me something… is it more dignified to force a child to live with his/her severe sensory issues and physical discomfort… and have them suffer various embarrassments in front of strangers (or whoever) in public… than it is to medically treat the CAUSES of the sensory issues & discomfort… where they can comfortably function and relate to others? Which is more dignified?

    You clearly suffer from some deep-seeded issues with your own self-esteem and you’re projecting them onto OUR children, assuming you can relate. But look how you relate to people. You ridicule and curse them in your videos when you disagree with their methods. You compared me (and people like me) to Charlie Manson! You’re unbelievable and completely unlikeable.

    And stop using “CHRIST” in your moniker. You are far from christian in how you treat others. Your name is Kent Adams. Use it with pride or shut your pie hole.

  30. christschool said on July 11th, 2007 at 4:23pm #

    Hi Erik,

    Glad you watch my videos. I’m agnostic as I’ve explained before.

    As far as sensory issues, I believe in accomodation. I’m sure biomed parents love their children, its what they some of them say about their children that bothers me, but, I don’t think that is a trait unique to only biomed parents. Go to a youth sports game to see some of the ugliness out there. You won’t see any video of mine where I say they don’t love their children (that I can think of).

    As far as the public reaction to me or my child and his and my dignity, I don’t want my child to live in a world where someone else defines his dignity other than himself. Utopian? You bet it is. But its a cause I’m willing to take on.

    However, it will take time. As the Gay community has learned (whom just not long ago were also defined as having some sort of mental disorder), changing public perceptions is a very hard thing to do. But, they are making progress with much of society. I want the same thing for autistic people as well. I also look to the deaf community as a good model for self awareness and self advocacy.

    I do ridicule. Perhaps its not the best method, but that is how I sometimes relate. I speak like a blunt instrument (that’s my autism showing I guess, which I don’t apologize for).

    If your child is in discomfort, accomodate the discomfort. There isn’t any medical evidence by mainstream science to show autistic people are all naturally inclined to be discomforted, whatever that is. There are issues where our sensory issues are not addressed and sometimes that may be interpreted as being in “pain”. Sometimes the lack of accomodation can cause all sorts of reactions often misunderstood.

    Many autistic and non autistic people use moniker’s Eric. If you choose to use the name you have for me, you can use that if it makes you more comfortable.

    JB, you sound as if you feel threatened? I was only replying to what you said about your child. I know nothing about your child other than what you have said. I too am proud that my preschooler reads, socializes and speaks. I credit him completely. He has a kind soul. I like to think I have helped him by understanding him better than anyone else in the family (other than my nephew who is also autistic), but it really has come down to his natural progression. He’s a great kid. Tough sometimes, like his Daddy, but I couldn’t have asked for a better child.

    Anyway, I only hope the best for your children. I hope they grow up to be proud and full of self esteem. The world out there is unkind to autistic people and they will certainly need your support and encouragement to be strong autistic adults. I’m forever indebted to my mother for always believing in me and always “protecting” me by way of the self esteem she gave me.

    CS
    “Self love is an act of definance to some in society” -Malcom X

  31. christschool said on July 11th, 2007 at 5:01pm #

    To anyone that wishes to see my “creepy” videos mentioned by JB, they can go here: http://www.youtube.com/profile?user=christschool

    What you will find is dozens of videos showing the “other” side of autism that doesn’t get much exposure in the mainstream media.

    Also, please note the link to The National Autistic Society of America’s fund raising site. It’s just a start but we hope to raise money for scholarships for autistic students, changes in the law to accomodate autistic people and others with neurological differences. Look for bigger things to come from TNASA.

    CS
    “Self love is an act of definance to some in society” -Malcom X

  32. Tim Kasemodel said on July 11th, 2007 at 5:40pm #

    Just to let you know Kent, your Alma Mater is not too pleased with you using their name as a “moniker” when you spew your hatred and
    foul language for anyone who wants to help their autistic kids.

    I want MY son, who I hope will someday read thru the biomed help he gets, to read how I did not give up on him and his sensory issues.

    “MAY be interpreted as being in pain”??????

    You are one sick bastard.

    But enough about you – Lets bring this conversation back to Anne Dachel’s comments please. She simply wants the world to wake up to the reality of autism, the one you so deparately want to ignore……

    Tim Kasemodel
    Wayzata, MN

  33. Teresa said on July 11th, 2007 at 6:02pm #

    To CS..aka Kent,

    You visited my youtube and made a really nasty comment. I have seen some of yours but did not leave a comment. They were mocking and unenjoyable to view. You make incongruent points about autism and express an opinion that I don’t agree with. You on the other hand, leave snide and mean posts often.

    I am curious how and who made a diagnosis of autism to you? You appear to have more traits in the umbrella of narcissism. I have met some very nice hf/asperger adults and they are not mean at all. They are very accepting of parents being concerned about their children who have medical illnesses. They have shown an interest in the environmental/vaccine paradigm of today and do not cling to the “gene only” theory.

    I am not sure who elected you spokesperson of all autistics but I think it’s time for a new vote.

    Teresa… aka redhead
    http://www.youtube.com/profile?user=redhead60707

  34. christschool said on July 11th, 2007 at 6:04pm #

    Hi Tim,

    Well my alma mater is still soliciting me for donations so they must not be too displeased.

    Why the language?

    I hoped to perhaps start a dialogue but I see that may not be possible. Again, all the best to you and your child.

    CS
    “Self love is an act of definance to some in society” -Malcom X

  35. qchan63 said on July 12th, 2007 at 12:12am #

    So Christschool expresses a couple of reasoned, relatively non-inflammatory opinions, and suddenly he’s a “sick bastard,” his videos are “creepy,” people at his alma mater are apparently holding emergency meetings over his slanderous ways, and he simply must, MUST shut his pie hole immediately (but in a nice, Christian way).

    This is what happens to an actual “dissident voice,” i guess. Anyway, i happen to like his videos. Probably will be hearing from my alma mater soon (if someone here hasn’t called them already).

  36. Tim Kasemodel said on July 12th, 2007 at 5:25am #

    The language came from my repulsion that you might look at a child who is bending over a chair in severe gastrointestinal pain and view it as the child “accomodating” themselves and never try to treat it.

    Anne Dachel started a dialouge about her view of the politics behind the autism explosion and you came to twist it into something about demeaning autistics in general. This happens every time you post on an article – there never is any real dialouge when you make it all about you.

    As for my use of the word bastard – you can hardly sit back smug acting like THAT word would shock you……… your use of the F-word in a YouTube video prompted me to contact the actual Christ School and this was their reply:

    “This gets stranger and stranger. I can see where he lists Christ School as his Alma Mater, and I can see the images of our web site, we just can’t find him in our database anywhere.”

    Stranger and stranger indeed…..

    Tim Kasemodel
    Wayzata, MN

  37. christschool said on July 12th, 2007 at 6:57am #

    Mr. Kasemodel,

    Why are you calling my alma mater? Just what are you trying to find out about me? This is rather scary to me. Is your intention to frighten me? Well, it worked.

    If someone wanted to talk, get to know me, they could certainly click on the user name in my profile on youtube. However, I must say that I don’t wish to correspond with you at this point.

    CS
    “Self love is an act of definance to some in society” -Malcom X

  38. Tim Kasemodel said on July 12th, 2007 at 7:13am #

    Kent, I could care less about you – The reason why I contacted the school was a certain video you did on a freind of mine that bordered on slanderous, but a horrible attack nonetheless. Did you try to “get to know” him????????? Goodbye Mr. Adams.

    Dear (Director of Communications),

    My name is Tim Kasemodel and am a christian and I have a child with autism. I was viewing some autism videos on youtube and ran across many that are posted by someone using the name “christschool”. I want you to be aware of this because many of his (a father of a child with autism, who says he is autistic as well) videos and posted comments are very vulgar, with profanity used often. Regardless of his opinions on autism treatments, I feel he uses an unecessary amount of poor taste to convey them.

    I am surprised that anyone who would use Christ in part of their name would be so shameless and hateful. I hope very much that his use of your shcool’s name is a coincidence. It may be a good idea for someone from your organization post a comment asking him to change his username, so people would not associate his rude, vulgar and hateful videos with your school.

    Tim Kasmeodel
    Wayzata, MN

  39. qchan63 said on July 12th, 2007 at 8:59am #

    So someone here really IS contacting people’s alma maters? Ouch. I thought the notion seemed like a silly joke.

    I’m a bit surprised the letter didn’t read, “This sick bastard has posted comments that are very vulgar, with profanities that are used often.” But i guess that might have represented an unnecessary amount of poor taste. (And you always want to use just the RIGHT amount.)

    Interesting that the apparently extra-sensitive, easily offended people on this board include one who apparently thought it amusing to sign the name “Raymond Babbitt” to a petition calling for respect for autistic people; another who hijacked domain names related to bloggers who didn’t agree with his viewpoints, as some kind of head-scratching prank; and others who apparently split their time between calling people names on the Web and trying to get those same people into trouble for their own use of language.

    Not terribly flattering, gentlemen.

  40. Fisherman said on July 12th, 2007 at 1:25pm #

    In light of the conversation here, it might be interesting to note that in recent years, cyberstalking has been defined as a crime in most states. If you feel you have been cyberstalked, there are attorneys specializing in this area of the law that can advise you. Check your local and state laws if you feel you have been cyberstalked. To quickly find your state’s laws on Cyberstalking, you can go here:

    http://www.haltabuse.org/resources/laws/index.shtml

    Just for kicks, I looked up Minnesota. Minnesota is a state where cyberstalking is against the law. Below is the law from Minnesota:

    Minnesota
    609.749 Harassment; stalking; penalties.

    Subdivision 1. Definition. As used in this section, “harass” means to engage in intentional conduct which: the actor knows or has reason to know would cause the victim under the circumstances to feel frightened, threatened, oppressed, persecuted, or intimidated; and
    causes this reaction on the part of the victim.

    Subd. 1a. No proof of specific intent required. In a prosecution under this section, the state is not required to prove that the actor intended to cause the victim to feel frightened, threatened, oppressed, persecuted, or intimidated, or except as otherwise provided in subdivision 3, clause (4), that the actor intended to cause any other result.

    Subd. 2. Harassment and stalking crimes.

    A person who harasses another by committing any of the following acts is guilty of a gross misdemeanor: directly or indirectly manifests a purpose or intent to injure the person, property, or rights of another by the commission of an unlawful act; stalks, follows, or pursues another; returns to the property of another if the actor is without claim of right to the property or consent of one with authority to consent;
    repeatedly makes telephone calls, or induces a victim to make telephone calls to the actor, whether or not conversation ensues;
    makes or causes the telephone of another repeatedly or continuously to ring; repeatedly mails or delivers or causes the delivery by any means, including ELECTRONICALLY, of letters, telegrams, messages, packages, or other objects; or knowingly makes false allegations against a peace officer concerning the officer’s performance of official duties with intent to influence or tamper with the officer’s performance of official duties.

    The conduct described in paragraph (a), clauses (4) and (5), may be prosecuted at the place where any call is either made or received. The conduct described in paragraph (a), clause (6), may be prosecuted where any letter, telegram, message, package, or other object is either sent or received.
    A peace officer may not make a warrantless, custodial arrest of any person for a violation of paragraph (a), clause (7).

  41. Tim Kasemodel said on July 12th, 2007 at 2:38pm #

    Fisherman, You really did your homework.

    Good thing my letter to Christ School did not fall under any of the definitions in 609.749 Harassment; stalking; penalties. Read it again – I did not “contact someones “Alma Mater” , I did not even know who kent was at the time. I simply suggested theypost a comment asking him to change his username if he wants to talk like that.

    It is also a good thing that Kent does not live in Minnesota because his YouTube video on my freind might fall under the definitions in 609.749 Harassment; stalking; penalties.

    Carefully read Subdivision 1. Definition, and then watch http://www.youtube.com/watch?v=p5maRs7LGC4 – especially starting at time 5:45 thru 6:20 where Kent ends with “and frankly I don’t care who my “french” offends”…………..

    And you feel offended by MY language? This is why I contacted the school – having Christ’s name associated with this was a little too much for me to bear, and to do this to a freind of mine added to my cause. That was it. I have nothing to hide, that is why I sign my name, everywhere, everytime.

    Tim Kasemodel
    Wayzata, MN

    Tim Kasemodel
    Wayzata, MN

  42. Fisherman said on July 12th, 2007 at 6:26pm #

    Hi Tim,

    I watched the video you linked and your question about Subsection 1. Subsection 1 would not apply to this video because the video is protected by the federal Constitution because it would be considered political speech. More locally, Minnesota law is careful not to confuse political speech with how you are interpreting this video. See further under the notes for section 609.749 wherein the notes accompanying the section set forth the following: “This section does not apply to any peaceable, nonviolent, or nonthreatening activity intended to express political views or to provide lawful information to others. This section shall not be construed to impair any constitutionally protected activity, including speech, protest, or assembly. (2000-125, sub.1; 2000-140, sub. 91.) Telling someone FU is not considered threatening and I assume that parts of the video were public and fall under fair use rules, particularly as it relates to political speech, commentary and parody.

    As far as the message in the video I really didn’t find much wrong (nor novel for that matter) with it from a disability rights perspective. I’m not autistic, but I know what it means to be exploited. So in this way, I have natural empathy with this position. This person seems to be saying that he has felt exploitation in his life as a result of his “disability” (and by inference he has seen the same exploitation occur with his own child and does not want other children to have to suffer from exploitation). I don’t know the person he was directing this to but I did read all of the comments on the video and deduced that QuantumErik was the person he directed the comment to.

    I also don’t know much about Hyperlexia but I did follow the link provided on the video which appears to support his position that hyperlexia is a common “condition” for some people with autism (the validity of which I cannot attest to). Thus, I understand his second point about not using the condition as some sort of “proof” that the child is “cured” in promoting what he believes is questionable experimentation on children (40 pills a day seems like a lot for any condition, but I’m not a doctor).

    Many people react strongly to what they perceive as child exploitation, especially if they themselves were exploited as children. If I had autism, I might feel a bit angry as well if I were familiar with this type of situation. However, I might have attempted to make my point differently. But what I know about autism could be fit on a thumbnail. I understand there are difficulties with social skills and perhaps that is why he didn’t make his point with less “abrasiveness”.

    I took the time to look at some of his other videos and found them very enlightening. This is a whole area of advocacy I’m not familiar with, but I intend to learn more.

    One video I particularly liked was this one –
    http://www.youtube.com/watch?v=trym2trONes
    I think this video could speak to anyone that has felt like an outsider in society, misunderstood or has been abused by someone at some point in they’re life.

    I think/assume you should/have looked at the rest of his videos before you come/came to such a conclusion.

    I understand your looking out for someone you consider a friend and it’s natural to be protective of friendships. However, I’m not sure your going about it the best way.

    You indicated earlier that the school searched their “databases” for this individual and didn’t find anything. That would lead me to several conclusions. Firstly, you either don’t have the correct name or he didn’t attend the school. Secondly, even if you did have the correct name, this person would have had to agree to release information about himself in very restricted ways (potential employers or specific requests such as for admission to another educational institution) or thirdly the person you spoke with wasn’t familiar with student records law and was giving out information that is against privacy laws, even denying attendence is a violation if they didn’t receive a signed release form from you. I guess a fourth conclusion could be drawn if you misrepresented yourself, which would be a very grave mistake if this individual decides to pursue his privacy rights because if you are who you say you are, it should be easy to trace your phone records.

    I’m suggesting to you that you are/could be personally in some very grave legal waters here if this individual decides to exercise his rights. I don’t think a jury or judge will “buy” your argument that you were just protecting the school’s image (what would be your ‘legal consideration’ for this would be the first question asked). On the contrary, they may come to the conclusion that you were attempting to harass and intimidate this individual.

    As to your other point about using your name and the town you live in, I simply would advise you not to do that because a lot can be gathered on you from that information and since you in essence have voluntarily surrendered control of your personal information by this act,, you are essentially trusting the entire world with your information. There is rampant identity theft, child predators and psychopaths out there. This is actually the first time I’ve come across anyone on the internet insisting on using their real name and the town that they live in. I would highly recommend you rethink this “policy”.

    The internet is a wonderful technology that is being used to expand human knowledge, exposing us to people we don’t normally encounter in everday life but it can and has been used for very destructive purposes. Also, never underestimate a politically elected official, such as a district attorney, who may be keen to prosecute cyberstalking laws. DA’s are notorious for “excersising” certain statutes depending on the political and or societal demands of their local electorate.

    Peace

  43. Tim Kasemodel said on July 12th, 2007 at 7:11pm #

    Fisherman,

    You have given this a lot of thought. I appreciate your comments and advice. I guess I will wait and see.

    Peace to you as well.

    Walleyeman

  44. Erin Petersen said on April 9th, 2008 at 4:39pm #

    thank you for writing this article with care and accuracy :) my brother has autism and i believe people should care more about autism like how the number of autistic people are growing higher god bless you and peace out

  45. donna williams said on August 18th, 2008 at 3:35pm #

    I read this blog and am still waiting to hear which professional diagnosed Christschool as autistic. My 3 day inpatient assessment at age 2 in 1965 at St Elmo’s Private Hospital in Brunswick, Victoria, found me to be psychotic.

    The Psych and Guidance team at my primary school, Preston West Primary 1968-1975 assessed me as disturbed.

    Dr Lawrence Bartak, a senior Educational Psychologist, widely published senior lecturer at Monash Medical Centre, Clayton, Victoria, with over 40 years experience diagnosing and working with people with autism, diagnosed me with autism in 1991.

    Dr Leslie Tan, an audiologist at Listening Works, Camberwell, Victoria, diagnosed me with a receptive language processing disorder.

    I was diagnosed in the mid 90s with a visual perceptual disorder by and Educational Psychologist.

    Several immunologists diagnosed me with primary immune deficiency and a series of gut, immune, metabolic disorders.

    Of course, Dr Fred Volkmar, a US psychiatrist who had never met me nor ever seen video footage of me at the time, did reply to a radio interviewer (who had also never met me) that I didn’t fit his experience with the 40 high functioning autistic adults he’d met. And, following the publication of my first book in which I wrote briefly of his office behavior) an ex university Sociology supervisor with no qualification in child development or psychology who had never known me outside of the private meetings in his office and my participation in his classes did challenge my diagnosis, as did the interviewer he went to, Kathy Gollan, at the ABC, who had also never met me.

    http://blog.donnawilliams.net/2008/03/17/diagnosis-autism-and-a-untidy-boxes/

    But given Christschool has widely proclaimed me as a fraud (all my childhood pictures are for view on my website http://www.donnawilliams.net ) I was certainly waiting to see his response as to who diagnosed him as autistic.

  46. Upendraya said on February 14th, 2009 at 6:44am #

    Please, can you PM me and tell me few more thinks about this, I am really fan of your blog…