No More Train Wrecks · Mar 17, 01:00 PM

The morning of March 7, a surprise email inspired me to check in with Dr. Robert Hendren, Executive Director of the U.C. Davis MIND Institute. I hoped to get an update on the status of the Task Force addressing questions raised in my February 1 letter protesting a MIND Institute representative’s use of the term “autism epidemic” and dissemination of misleading information about autism and vaccines.

Dear Dr. Hendren and Colleagues,
In your email of February 4, you indicated that you intended to convene a Task Force to render a position statement on the use of the term “epidemic” to describe autism. This morning, I was forwarded the following post made by Rick Rollens to a California autism advocacy mailing list. This post constitutes the only new information I have received about the composition, mission and activities of the Task Force since our previous correspondence.
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From: rrollens@...
Date: Sun Mar 5, 2006 12:14 pm
Subject: Epidemic Semantics
The M.I.N.D. Institute is currently in the process of convening a work group (which I will be part of) to determine the efficacy of the M.I.N.D. Institute using the term “epidemic” to describe the autism epidemic.
For most of us living, breathing, and thinking persons, this is clearly a no brainier. Since the first historic California Report was published in 1999, and the subsequent publishing of dozens of other studies and reports, there has been, and continues to be, massive evidence, both through science and real world observations, of an autism epidemic in California as well as in the modern developing world.
It continues to amaze me how any thinking person who has half a brain could suggest that somehow we have missed thousands of these train wrecks all these years, and continue to this day to have misplaced the huge hidden hordes of thousands of adults who should, in fact, be living somewhere today if the incidence of autism has not dramatically increased over time.
We know that in California that 80% of persons with autism in our DD system are under the age of 17 years old, and 2 out of 3 are under the age of 13. That means only 2 out of 10 are between 18 and death. Where are all the adults? In group homes? No. In the developmental centers? No. You simply don’t miss, or cant hide, a person with full syndrome autism. The large number of adults with autism that should be here, simply do not exist.
And lastly, for those Divas and others who are part of the “neuro diversity” crowd, if you, for yourself or on behalf of your your children, are not interested in a cure for this plague of a disease called autism, then just simply step aside. There are thousands of families who want a cure for their child and would be happy to take your place in line. Simply get out of the way, and go about with yours and your child’s happy, contented, life. rick
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I recognize that the above post is an expression of Mr. Rollens’ personal opinions, not an official communication of the U.C. Davis M.I.N.D. Institute. I do not question his fundamental right to communicate in a combative and insulting manner.
I hope that Task Force members will discuss not only whether it is scientifically accurate to employ sensationalistic and derogatory language such as “epidemic,” “plague” and “train wrecks” to describe autism and autistic people in official communications of the U.C. Davis M.I.N.D. Institute, but will also consider whether it is civil, decent, courteous, sensitive, and respectful to do so, no matter how “efficacious” such language might be for raising funds or garnering publicity. From the U.C. Davis Principles of Community:
“We affirm the right of freedom of expression within our community and affirm our commitment to the highest standards of civility and decency towards all. We recognize the right of every individual to think and speak as dictated by personal belief, to express any idea, and to disagree with or counter another’s point of view, limited only by university regulations governing time, place and manner. We promote open expression of our individuality and our diversity within the bounds of courtesy, sensitivity and respect.”
Many thanks for your willingness to address the questions I raised in my February 1 letter.
Sincerely,
Kathleen Seidel
neurodiversity.com | honoring the variety of human wiring

Ninety minutes later, I received the following two messages, the first addressed to me alone, the second to the entire recipient list:

You have WAY too much time on your hands. Why dont you apply some of that time, like me, working to finding a cure for this horrible disease? Iam sure the thousands of suffering children, and handful of adults, would appreciate that more then you wasting your time trying to deny that there is no autism epidemic. rick
‡ ‡ ‡
It seems someone has way to much time on their hands. I stand by what I have said. Look forward to the work group. rick

Shortly thereafter, Mr. Rollens sent the following announcement to the entire recipient list:

I have been invited and plan to speak in Washington, DC during Autism Awareness Month at this year’s largest national autism rally about the need for the autism community to get behind our efforts at M.I.N.D. in discovering the causes of autism and the autism epidemic, developing effective treatments, and a cure for autism.
Specifically I will strongly urge more community and donor support and investment in the innovative research efforts currently underway at M.I.N.D., particularly in funding and supporting the Autism Phenom Project. rick

Below the message there was appended a schedule of a previous Washington rally at which Mr. Rollens had spoken two years before.

The next day, Dr. Hendren replied to my email:

I have appointed two faculty members to chair this committee and will ask them to consider the important points you make below.
Robert L Hendren, DO
Professor of Psychiatry
Executive Director, M.I.N.D. Institute
Chief, Child and Adolescent Psychiatry, UC Davis

In my response to Dr. Hendren, I reiterated and documented my particular concern about the use of the “train wreck” analogy to describe disabled people.

Of course, you and your colleagues know my feelings about the use of the word “epidemic,” so there is no point in repeating myself. However, I am compelled to reconvey my response to the description of autistic people as “these train wrecks.” I am no less offended by this than I would be by the use of “crip” and “spaz” to describe people with cerebral palsy or polio survivors like my father. I know intimately the damage that language like this can inflict. I am convinced that the high incidence of depression in individuals with pervasive developmental disorders arises not only from metabolic peculiarities, but also from oppression, exclusion, abuse, and denigration.
The “train wreck” analogy, unfortunately, has gained currency thanks in large measure to Mr. Rollens. In a 2002 interview with the BBC, he stated, “Missing a child with autism is like missing a train wreck.” In his January 2006 press release, he stated, “I am sure it is about as easy today, as it has been in the past, to somehow misplace or not recognize thousands of adults with full syndrome autism…about as easy as missing a train wreck.” With his March 5 comment, “It continues to amaze me how any thinking person who has half a brain could suggest that somehow we have missed thousands of these train wrecks all these years,” his rhetoric has devolved from simile to outright name-calling.
I received Mr. Rollens’ Tuesday email announcing his participation in next month’s [rally], where he is scheduled to advocate for increased funding for the UC Davis MIND Institute’s important research and clinical services. I hope that you, your fellow Board members, and other UC Davis administrators will see fit to encourage him to exercise restraint as he represents the MIND Institute to legislators and the public. The work of the UC Davis MIND Institute has a worldwide audience, as do the communications that emanate from it.

I heard back from Dr. Hendren, who indicated that David Amaral would be chairing the Task Force, and that they hoped to meet and have a statement by later in the Spring. He went on to state:

I agree with you about the potential of a negative connotation to “train wreck”. I think Rick does as well and I think he will avoid it in the future. I believe he will respond to you about this.

That response came the next day.

I wish to state, that do to the misunderstanding/misinterpretation by a few of my use of the term “train wreck” when I dramatically describe and illustrate through the use of a simile my perspective that it is impossible to have missed thousands of persons with full syndrome autism all of these years just like it is impossible to miss the obvious, I will cease using the term “train wreck” from this moment on. I never have intended or meant to, describe any individual, with or without autism, as a “train wreck”, including my beloved son Russell. If the term has offended anyone in a personal way, I wish to apologize.
P.S. Please note that it is possible that I used the term “train wreck” in the upcoming cover story on autism and the M.I.N.D. Institute in the April edition of Southwest Airline’s Spirit Magazine. I did the interview months ago. rick

I replied with a simple, “Thank you.”

It’s gratifying to know that Mr. Rollens intends to desist from this particularly gruesome rhetorical habit, and thereby set an example for fellow travelers inclined to employ similar comparisons when making public statements about autistic people. If we’re lucky, perhaps the writers and editors at Spirit Magazine will decide that there are better ways to take autism awareness to the skies than by dangling images of autistic “train wrecks” in front of the eyes of passengers settling down for a hopefully-uneventful plane ride.

And if we’re lucky, perhaps the UC Davis MIND Institute Task Force will decide to affirm that a taxpayer supported scientific institution should communicate in a scientific and professional manner, should refrain from sensationalism in its portrayal of disability, should refrain from flatly denying the existence of autistic-spectrum adults, and should be respectful of the needs of all autistic people and their families — not just children, and not just parents who have their minds made up that vaccines are the cause of of an “autism epidemic” and seek to exaggerate the extent to which existing scientific evidence supports that belief.

Comments


  1. Nice work Kathleen. Let’s hope Rollens doesn’t conjure up a new and even more offensive ‘simile’

    — notmercury    Mar 17, 02:41 PM    #

  2. What boorish behaviour. If the MIND Institute examine the evidence and finally decide that there is no evidence for an autism epidemic will Mr Rollens storm off in a huff and join the Geiers?

    — Mike Stanton    Mar 17, 04:19 PM    #

  3. Wonderful. It was great to see Rollens’ last message to you – it was obvious he had been properly chastened into apologizing for his “dramatic simile”. Let’s hope he’s learned his lesson, although I don’t hold out too much hope for someone who would write “do to the misunderstanding/misinterpretation”. ;-)

    — Clay    Mar 17, 05:55 PM    #

  4. Thank you once more for your tireless efforts to inculcate respect in those who seem to have none.

    — Kev    Mar 18, 03:38 AM    #

  5. I’ve just seen JBJr’s new rant about this blog entry on his alleged blog… so far, all I’ve seen here is venom … it’s pretty clear that the man’s got a bizarre sense of reality: how does he think his kid would feel to be called a “train-wreck”? As for Rick Rollens… well, the less said about him, the better.

    He had to be told off in order for to get an apology from him? What does that tell us? I’m not sure that the apology is at all sincere….

    — David N. Andrews BA-status, PgCertSpEd (pending)    Mar 19, 06:33 AM    #

  6. It’s a shame that so many in the pro-cure movement do not read about Autism outside the narrows fields that purely promote suspect and inaccurate information about Autism to support preconcieved conclusions. I decided to have a flick through one of the PDF files on my comp and came across the UK National Autistic Society report The Hidden Workforce. The one providing information for employers I believe is the most important: no scare-mongering there. It says in the opening lines that whilst a minority of those with Autism have learning difficulties, others have average or above average intelligence and are highly educated.

    The NAS has also always maintained that there are 400,000 (diagnosed?) Autistic people in the UK and most of them are adults over 18.

    — Lucas McCarty    Mar 19, 11:10 AM    #

  7. Thank you for your eloquent persistence in defending our loved ones, Kathleen. It’s good to have someone like you on our side.

    — Chantal    Mar 20, 09:16 AM    #

  8. I’m a mom. I have two children. A daughter who is twelve and a son who is ten. My son, Beau, has autism. I am a young blogger and I have been surprised by the disagreement on the internet between the pro-cure group and the neurodiversity group. I guess I would have to be placed in the pro-cure camp. I hope you will be a patient reader. I love my son more than my next breath, no differently than I love my daughter. I have profound respect for my son, no different than I have for my daughter. What I want you to truly understand is that my son is not healthy; he was in a great deal of pain. I’m not referring to the fact that he can’t talk and that most things are very difficult for him. I am talking about physical pain. I have seen the pictures of the inside of his stomach and intestines. He was inflamed from top to bottom. He had bleeding ulcers. He was in tremendous pain, and what kind of parent would I be if I let my child be in pain? So we got biopsies and lab reports, and, as a result, medication. These lab reports are so abnormal; they lead to so many questions. How can I not look for the answers to those questions? How do I say no to further treatment?

    No child is a train wreck. I know Rick Rollens would agree with that. My child is a sweet, affectionate, funny, beautiful gift from God that makes me smile every day. But his physical body is a train wreck; his digestive and immune systems are a broken, confused mess. I would be a cruel mother, indeed, if I let that condition persist. It’s a sacred responsibility to take care of our children to the best of our ability. I pursue treatment for Beau because I love and respect him. I thank you for listening. I hope I have been understood.

    — Linda Betzold    Mar 20, 09:03 PM    #

  9. In which case Linda, I would ask why you think curing your son of Autism would sort out those severe physical symptoms when there is no evidence that Autism is the cause of them? Why are there so many Autistic people who do not have such terrible problems?

    After hearing of your son’s problems, I am of the opinion that you should seek appropriate treatment for them. What you should not be doing is supporting the unfounded assertion that these are Autism/Mercury Poisoning symptoms: you propagate a fairy-tale at the cost of my wellbeing.

    I have struggled for years, even here in the UK, to get services I need to survive. The biggest barrier for me has been false and perjorative information about Autism widespread among those I need to convince I need those services.

    I’d like to thank you for being very civil in your post too, we see it rarely from the pro-cure camp.

    — Lucas McCarty    Mar 21, 01:39 PM    #

  10. All good questions. My son had endoscopy and colonoscopy to address his digestive issues two years ago, at the age of eight. His gut was essentially on fire, from top to bottom, pardon the pun. He went on two anti-inflammatory medications soon after. Within a few weeks, all of his screaming and crying stopped, and the digestive issues improved greatly. He also spontaneously self toilet-trained, a benefit I had not expected. I sought medical help with the digestive issues to relieve my son’s pain. I did not treat his digestive symptoms to cure his autism. I don’t think the digestive issues cause the autism, but I do think the two are related.

    When my son was diagnosed autistic, I was shown a list of 20 symptoms, and the doctor told me that if a person exhibits 10 or more of the 20 symptoms, he is considered to be autistic. One of those 20 symptoms was unexplained crying and tantruming. My son’s crying was considered part of his autism, when in reality he was in physical pain. I just felt that if these professionals could be wrong about his crying, then what else are they wrong about? If my son was diabetic, they would have taken blood and shown me his lab results compared to normal ranges. For autism there is no definitive medical testing for diagnosis. It all seems so nebulous.

    You’re right, there are many autistic people without these severe digestive issues. My son falls into a fairly large subset of autistic people who have this problem. My son was part of a large study here in the U.S. His pathology results were consistent with the other autistic children who had severe intestinal inflammation. Their condition is autoimmune, and it is unique to a subset of people with autism. It is not Crohn’s disease or any other known autoimmune condition that affects the digestive track. This condition is unique to a subset within the autistic population. It is now called autistic enterocolitis. I also don’t believe that physical symptoms appear out of nowhere. There are always biological, boichemical reasons for symptomology, even if we can not yet detect or completely understand them.

    It’s no secret that individuals with autism vary dramatically in their abilities. My son does not speak, but many, many autistic people do. And among those people who do, their verbal skills vary greatly. Autism truly is a spectrum disorder, a wide spectrum. A variety of symptoms may be involved, and those symptoms may vary greatly in severity. Likewise, genetic predisposition will vary among individuals on the spectrum as well, explaining why some have certain symptoms and others don’t, including the tendency toward this autoimmune intestinal inflammation.

    I don’t believe that the link between autism and mercury is a fairy tale. Allow me a quick review. We know that mercury is in the environment. We know that it was in many of the childhood immunizations for many years. It still is in some adult immunizations in the U.S. It is also known that mercury is toxic to the human body in numerous ways. For instance, mercury damages the immune system, shifting it in a very specific way. My son’s autoimmune condition is consistent with a mercury-damaged immune system; he is Th-2 shifted.

    I find myself wanting to ask you a few questions, too. I don’t understand how those of us who consider and investigate a mercury-autism link jeopardize your well being. I’m not being facetious. I ask because I truly don’t understand. I would like to understand your situation. I would like us to understand each other.

    I’d like to say one last thing today. I have already talked about the fact that the symptoms of individuals on the spectrum vary dramatically, in kind and severity. My son is considered very low functioning. He is nonverbal, and I have been told that he is considered mentally retarded because his development is so incredibly delayed. I am concerned for my son’s future. It seems very likely that he may never be able to live independently and care for himself. I will not live forever. Who will care for him? Who will pay the cost of that care? Yes, I will follow the research. I will try to cure his autism. I will do whatever seems reasonable and potentially helpful. I want him to be able to live independently, care for himself and whomever he loves, and make choices about his own life as an adult. In his current condition, he has no good choices. I want him to choose his own path in the world, and choose it from every possible, wonderful opportunity the world holds.

    I thank you for this discussion, and I hope it continues.

    Most sincerely,
    Linda

    — Linda Betzold    Mar 22, 09:07 PM    #

  11. You’ve been very polite Linda and deserve some clear answers. You will not understand the view of many of us who are anti-cure based on what others will often say about us, often resorting to Strawmen arguements where they don’t argue against what we say but what they insist we meant when we said something.

    Best you here from us directly, or at least me as far as I’m able to describe it. I was prior to the age of six what could be considered ‘low-functioning’ and certainly not very different from the son you’ve described. I’m twenty-one now.

    First of all, Autism is not a spectrum. It was Lorna Wing that spawned this model when she also coined the term Asperger’s Syndrome which has now become the supposed ‘high-functioning’ type of Autistic. This, despite Kanner and Asperger describing patients that were virtually identicle. Professor Wing has since expressed regret that words she used to describe in lay-mens terms how one Autistic is very different from another has been taken literally by professional researchers as an accurate description of the Autistic condition(I thought it was us that were supposed to take everything over-literally).

    On how misinformation about Autism harms Autistic people, imagination would have filled in the blanks as history has shown what happens to a group when misinformation is spread about that group: Ethnic minorities, Jews, Muslims, ‘Mongols’, Gays, Foreigners, Lunatics, Idiots, those diagnosed HIV-Positive and even Women.

    You were shown a list of 20 symptoms and among them was “unexplained crying and tantruming”. I have never read a diagnostic manual that has listed this as a symptom of Autism. The criteria you were shown was made up by some well-meaning person that was content to work with a stereotype of Autism without the burden of proof when it comes to proving anything about their idea of Autism as true.

    I’ve been trying to explain to Carer’s Resource here in the UK why a ‘communication and social’ disability prevents me cooking a meal for myself. This is difficult because their version of Autism is vastly different from mine and whilst I have to prove that my experiences and the science supporting their existence is true, they do not have to prove that I MUST have digestive problems, MUST have problems with empathy(therefore no one can ever be blamed if I get upset ‘for no apparent reason’ except me) and most of this false information on Autism provided to these people come out of the US and Canada.

    The UK National Autistic Society is the best Autism society in the world. It scores a four out of ten on good days. The NAS is seen as an inactive fund-raiser that never directly helped anyone, but they refuse to do the same as every other Autism organisation in the world and do not spread fear or pseudo-scientific information about Autism. The fact that they refuse to contribute to harm makes them the best, even if they do little good either. When giving out information about Autism, they choose the wording very carefully to avoid the mistakes that Wing made.

    Plenty of people who support the push for a cure for Autism have also said to the effect that Autistic people should not get the services that I’ve been seeking because we’ll be cured soon anyway and it would be really selfish of us if we chose to remain Autistic and therefore a burden on society. Those people have never had to prove that Autistic people are a burden because they are Autistic, even the ancedotal cases of severely disabled people that they use don’t equate to proof because they don’t show how Autism makes a person that way. They don’t do that because they are working with preconcieved and projected models of Autism that are overly-simplistic.

    Where Mercury is concerned it is the pipe-dream of quacks with vested interests and again, preconcieved ideas about Autism. They ignore the sixty years worth of Autism research, combing it only for supposed evidence that theirs is the only correct view.

    You tell them that if people were exposed to more Mercury then why hasn’t the incidence of real Mercury-related disabilities gone up? They tell you that it’s only a subset of the population that are unable to excrete metals properly. They don’t have to prove this because if they had to wait for final proof it would be too late(where have we heard that before?).

    You ask them why in Britain where Mercury-based preservatives aren’t used in vaccines, the Autism rate has been far higher than in the US for a long time(it was 400,000 our of 60 million in 1996, mostly adults) whilst some have said that there are ‘no cases of Autism in Russia or China where Mercury is not used’. They say that us British Autistics get the Mercury from the enviroment(they do not have to prove this, they just need some health agency to deny it and it automatically becomes true) and some even say the MMR vaccine causes our vulnerable subset to become even more vulnerable because enviromental Mercury weakens the immune system, allowing the Measles virus to get into the spinal fluid..you get the idea. They do not have to prove this. You can also correct them that many Chinese medicine remedies contain lots of Mercury, at which point they miraculously change their mind about the incidence of Autism in China. Not that they had to prove there were no Autistics in China to begin with and have to prove there are Autistics in China now- all they need to know is if there’s Mercury.

    It also doesn’t matter that of all recorded cases of Mercury damage, there has never been one case where damage was reversed by removing Mercury. This is a feat greater than Christ turning water into wine. Those who push the Mercury line do not need to bother with the evidence against as long as they always have evidence for: any inference made towards saying Autism is Mercury poisoning must be true based on the evidence they themselves have seen, the evidence doesn’t even need to support what they said as long as it leads to the same conclusion.

    Sorry if any of this sounds a bit aggressive.

    One of the most diabolical falsehoods in the Mercury case is that a hair test for excretion where metal content is low actually means the opposite: it means that there is LOTS of Mercury in the body because if it’s low in the hair then it isn’t being excreted. But if the metal content is high, that ALSO means there is lots of Mercury in the body because there has to be if so much is coming out. Do you see the paradox? How are you supposed to prove there isn’t lots of Mercury?

    This is not deductive logic where all possibilities are considered and then each one eliminated until there is one or none left to find a definitive truth(like chipping away at a lump of rock and finding a shiny gem inside.

    This is more like having a theory and then stacking up the evidence for it(imagine the image of a murky gem being put higher and higher up to make it look better than it really is, but the higher it gets the more wobbly the tower).

    Which research do you follow? Did you know that one in ten Autistic people have what is called a Savant skill like Dustin Hoffman’s character in Rain Man? How does Mercury account for such a common incidence? Do any of the pro-cure Autism researchers ever think to investigate these abilities for the information they might discover on how Autistic people learn? Did it not occur to them that this would be far more useful than the failed paths they’ve clung to so far? Or do they have a problem with accepting a group of people for who they are and that their own natural way of learning is best for them?

    Do they know that for every criteria denoting Autism from the perspective of what is not there also has an opposite interpretation in the form of a describable Autistic strength? Enhanced Perceptual Functioning, what’s that?

    The biggest puzzle for me is why some have continued to miscontrue obvious Autistic strengths into weaknesses when even Kanner and Asperger from a bygone time where disability rights didn’t exist didn’t make some of the extraordinary inflammatory comments that are made now.

    I think this was a bit long but I needed to use so much space to explain clearly. I’m better at reading than writing.

    — Lucas McCarty    Mar 23, 10:33 AM    #

  12. Don’t apologize for the length of your post. I appreciate you taking so much time with me. I find nothing aggressive in your writing. I hear passion and conviction, not aggression. I have read your post several times and thought about it for a few days now. You gave me an avalanche of information and I am trying my best to sift through it.

    I still have to consider autism a spectrum. I hope we are defining spectrum in the same way. I mean all so different in so many ways. I know dozens of autistic children and they are all so different from each other. Some speak; some don’t. Some crave sensory input; some avoid it at all costs. Some are affectionate; some are not. Some learn quickly; some do not. I could go on listing examples; I know you get the idea. It is my experience that tells me this is a spectrum. If you would not call autism a spectrum. I am curious, what would you call it? How do you define autism? How do you describe it?

    You gave me a great deal of new information about mercury. Some of it is completely contrary to what I have been told and read on my own. Some of it I have never heard before. It raised some good questions for me. I am not afraid of questions. They are good things, only helpful. The only case of autism I know really well is my son’s. We tested my son’s hair at ages four and nine. At age four the mercury, and some other toxic metals, were really high, off the chart. At age nine, almost nothing was detected. I believe at age four he was still trying to get rid of the load of mercury he was given in the first two years of his life. By age nine, the damage was done to the detox system, and his body was now harboring it in tissues. It seems like a paradox, but it’s not.

    I’m sorry for the resistance you encounter in getting the services you need. I had no idea. In this country most people think a cure is the pipe dream of desperate parents. I can’t imagine my son being denied services because he’s they think he’s going to be cured soon. We get denied services, but not for that reason. My son is getting too old for certain services. Or the schools say they can’t afford the services we want for him. But no one ever says he doesn’t need anything, because he’ll be cured soon.

    I understand that some individuals with autism are not looking to be cured. Temple Grandin is content, and does not seek a cure for her autism. I respect her, I support her, and I admire her. She supports parents who pursue biomedical treatment for their children. I really appreciate her support.

    I was wondering if you could share with me whatever you remember from when you were a small child. You mentioned that you were much like my son before the age of six. So many times I have wished that I could be him for a week, a day, or an hour. I want to know what he feels. I want to know what he would tell me, if he could. I know it’s personal, and you certainly don’t have to tell me anything. I’d be grateful for any insight though.

    Most sincerely,
    Linda

    — Linda Betzold    Mar 26, 11:28 PM    #

  13. The problem with passion and conviction is that I might be wrong and be deaf to sound evidence showing it, so I’m in that crowd of people common in the Autistic community that do find passion and conviction where they impair reason to be aggressive.

    Rick Rollens may be full of passion and conviction, which is why he speaks to people who disagree with him the way he does. An equally valid description is that this is a very aggressive man.

    I hope we are defining spectrum in the same way. The common idea of the spectrum is that you have severely Autistic(therefore less Neurotypical/Normal) on one end and less Autistic(more Neurotypical/normal) on the other. This is not the version Lorna Wing meant and is by far the most damaging. I do not deal with mild/severe models of Autism because for me they don’t exist: what is mild or severe are the demands placed on the Autistic person, which in turn cause varying responses which are then interpreted as mild or severe difficulties inherent in the person because they are Autistic.

    The big problem with many people that look at Autism is that they do see floating boats but neglect to mention that boats require water to do so. Boats do not fly through the air for no reason. This is largely because people settle for the excuse “Because they’re Autistic” and I once did too. I’ve now learned to not say “Sorry, I’m Autistic” when someone gets angry with me because I am not remotely sorry for being Autistic and if I were to be admitting that I did this thing that made someone angry because I’m Autistic then I would be lying.

    I may not bathe for days, it’s not because I’m Autistic. It could be because the resources that would allow me to(water that is clean, correct temperature, certain brand of soap) is not there. It’s important that they are there because I’m extremely sensitive to enviroments in all the forms they can come in, even if I am not currently in those enviroments. I don’t switch of lights when I leave a room to save power, even if energy was free and limitless in resource I would still be keeping all lights off in my home except for the room I’m in simply because there is a complex reason why I can’t tolerate it. Best explaination:

    The Appendix is an organ that has no use for modern people, it was once meant to digest grass and leaves when food was scarce but this simply isn’t the case any more. Why doesn’t everybody have a mandatory operation to remove the Appendix to prevent complications with it later at a certain age? The simple answer is that it’s a person’s choice to do so and must be respected, even though getting rid of it is a sensible option. The choice of the individual is protected in this case, even though it could cause a problem to the many later.

    In Autism, so many of the issues are far more fundamental than those involved realise and as a result ethics can be abandoned in Autism that would cause outcry in others.

    It is my experience that tells me that non-Autistic people have their own spectrum and I could easily be led to believe you can stick those people on a line measuring their supposed level of functioning. But it fells different when you do this with ‘normal’ people, because the most recent historical examples of this are Nazi Germany, the eugenics movement and even the original IQ test was developed by a man convinced that eastern European immigrants were intellectually inferior and the IQ test could be used to prove this.

    For me, the most accurate model of Autism is that of a parallel but non-distant line of sensory proccessing, cognition and perception. An Autistic person is human(this has been contested by some experts in the field of ethics in animal welfare) and the manner in which the brain interpretes information is close but different to how non-Autistic people do it(Cats and dogs are close but different and cannot be argued accurately with the opposite description as distant but with similiarities).

    Going back to Mercury. I have never heard or read any expert in toxicology explain what the ‘ideal’ level is for each metal in the body. There is a such thing as a ‘normal range’ for metals, vitimins, etc. But just because the definitions of ‘high’ and ‘low’ with a medium in between exist does not mean there is an ‘ideal level’. ‘Normal range’ does not mean ‘ideal’.

    To my knowledge, no one knows what the supposed ‘optimal’ amount of metals and minerals for the body is supposed to be(only the reccomended intake) and the reason for this is because there simply isn’t one. This allows quacks to profess greater insight on the matter than proper scientists because the quack claims they know what the ideal amount should be and because no one can accurately say that the proper amount is different to the one quoted by the quack, the quack remains unchallangable. This is deliberate. It’s like arguing over which god created the universe without ever considering the possibility that the universe could have happened without any.

    When a person claims a certain number to be the ideal number, you can’t challenge them with a different number if the ideal number doesn’t actually exist. You can say “Most people have this amount of Mercury in the body” and claim it to be the ideal number, but it isn’t. Both the US and UK have obesity problems, does that mean when the majority of the population are fat, then the new normal range for weight becomes the ‘ideal weight’? No!

    As for detection: we never saw dinosaurs, but we can detect their existence. Ergo, if Mercury can be detected, it also must exist. This makes no mention of the methods of detection. Fossils provide multiple sources of information, in contrast to the detection methods of Mercury poisoning which when falls short(a lot of the time) other sources can be invented or extracted from irrelevent but unchallangeble data.

    I would love for someone to put it to the real test: send those private labs samples of Autistic and non-Autistic hair and get them to diagnose each sample based on the Mercury content. If they can diagnose Autism in a blind trial based solely on hair samples and Mercury content, I’ll start returning calls from the Flat-Earth Society about their theory.

    An issue about GR and the supposed cures for Autism is that they seem to believe certain agents only do one thing. They seem to think Mercury is a neurotoxin and nothing but. This is likely to excuse the fact that real untreated cases of Mercury poisoning have other symptoms, a common one being death. If Mercury caused any damage like the kind they described, Autistics would NOT have a normal lifespan.

    Some say that the alleged ‘explosion’ in Autism is down to Mercury-based preservative in vaccines. This conveniently ignores the fact that Mercury has been used in medicines for centuries, contradicting the claim of Rick Rollens that ‘missing Autism would be like missing a train wreck’ because there isn’t any reason given the fact that Mercury has always been so widespread in it’s use that Autism would not have been recognised much earlier than the 1940s.
    http://en.wikipedia.org/wiki/Mercury_%28element%29

    I won’t even begin to consider the possibility of the Mercury hypothesis until diagnosticians are able to accurately diagnose cases of Autism solely by hair sample.

    My alternative interpretation of your son’s test results go: he was shifting an amount of Mercury considered by them to be high and then he was shifting an amount considered by them to be low. But the information this gives does not indicate abnormality at all: he first removed a lot of Mercury because he had more and then he excreted less because he had less: his excretion was in proportion to the amount he had. The tests told you how much he was excreting, they did not tell you how much he had. The paradox is that if the results had been the complete opposite, when it was low early and high later, they still would have claimed Mercury caused Autism. They have provided no hypothesis or condition under which they can be proven wrong, this is anti-science.

    Even the Big Bang Theory has scenarios under which it can be proven wrong as did the Same State Theory that was the accepted wisdom before it. The Mercury hypothesis cannot be proven right until there is an accurate means of proving it wrong and then eliminating the concieved possibility of error.

    As for my own difficult in obtaining needed services, you have actually suffered the same thing it seems but not noticed. The reasoning for public policy on Autism is not written down anyway or said out loud but public policy on Autism reacts to the information available about Autism.

    There is a reason why adult services are limited around the world and if it wasn’t because of the information available on Autism, then the level of services in different countries would be vastly different. As it happens they are actually about the same. There is no country that is an ‘Autistic haven’ in the world because the information on Autism is globally the same. The NAS may be the best, but they don’t challenge the perjorative and inaccurate information given out by others.

    Once upon a time the reason why services did not exist for adults was because Autism was a childhood condition(childhood Schizophrenia) according to the information available that shaped public policy. When this was debunked it was replaced by the fact according to the information that adults should be institutionalised because their Schizophrenia-related condition could not be cured and by this time the available information said that a person cannot be able and Autistic. If an Autistic is able to do anything that an Autistic should not be able to do, they are either not Autistic or becoming less Autistic. This part survives even today: parents who see improvement in their children believe this is Autism fading away because Autism by definition cannot permit these things to happen. So when you try telling them there is no cure, they believe that the fact that their child is able to do something that they previously could not is proof that Autism is curable.

    Now the common public policy for Autism is reacting to the information that an untreated Autistic will be institutionalised, an Autistic given appropriate treatment will no longer be Autistic or be less Autistic. Both these ‘facts’ mean that services for adults are unneccessary and a waste of resources. Many different reasons for not providing services are given, few of them are ever true, not in the least that given by your son’s school to you that they can’t afford it.

    I believe you’re in the US, you may or may not have read or been told that under the No Child Left Behind legislation a school can not deny services based on cost or lack of financial resources. So whilst the school may claim it’s a resource problem, it is frankly not true. It’s public policy reacting to available public information which says an Autistic child will be treated appropriately and if they cannot be brought to an ideal form they will be institutionalised, public policy is not to concerned with favouring one of these outcomes over the other, only that resources are available for only these two possible outcomes for each case. Because in the eyes of public policy no other possible outcomes for Autistic adults are believed to exist, resources are not available to provide for them.

    For these reasons, many of the pro-cure groups insist that an Autistic adult able to speak or communicate in any way must be ‘high-functioning’ and therfore have nothing valid to say about what can be done for ‘low-functioning’ Autistics are in reality are quite the same. People have over-emphasised the differences between Autistic people at the expense of ever recognising what brings them under the common term of Autism to begin with. A parent who is desperate to cure their child and has already made a large emotional investment toward that end will struggle to believe there is a such thing as an Autistic adult not recieving treatment but recieving services that allow for that person to live as an Autistic person. I’ve listened to one parent before cry that her teenage son still uses diapers. I supposed an adult that still uses diapers may tell her that they find her comments demeaning at which point she claims they can’t possibley be as low-functioning as her son, chasitises them for wearing diapers as an adult(further demeaning them) and denying that they can possibly know anything about her son. All the while there is absolutely no consideration that her own son may feel the same way about her comments(which even if he can’t understand speech, he will be able to work out her feelings as many non-verbal Autistics do with their parents). It doesn’t strike people like her that adult diapers exist for adults that need diapers? Some once argued about the existence of adult diapers because ‘providing them would mean some adults never learn ‘proper’ toilet training. The feelings of the relevent individuals are never a concern, only the prejudices of others.

    As far as Temple Grandin goes, she supports parents but she does not support (as she is a scientist) quackery. At least not deliberately, I’m not sure if she understands that encouraging parents to ‘try anything’ will put a smile on the face of many salesmen but it is first and foremost the parents she is concerned for. My arguement with her is her lack of consideration for other Autistics who have to be on the recieving end of their parents attempts encouraged by Dr Grandin. She has also had trouble reconciling her opinion that Autistic cognition is similiar to animals, which has been seized upon by animal rights groups to blur the line between humans and animals by asking how Autistics can possibly be considered human based on sentience. Way to go Temple.

    — Lucas McCarty    Apr 3, 04:50 PM    #