AN OPEN LETTER TO STEVE SILBERMAN re NEUROTRIBES

I first met Peter a couple of years ago at an Autism Research Institute Think Tank. At the Think Tank Peter impressed everybody with his knowledge, specially about biochemical pathways. He was my lunch buddy for that couple of days and ever since we have kept in touch. I invited him to write a contribution to my blog and he obliged. You can read about his ideas regarding fever and the clinical manifestations of ASD in a previous blog: http://bit.ly/10NyJFk. Although self-taught I have always been amazed by Peter’s knowledge on biochemistry and autism in general.

Peter has participated in previous discussions regarding Neurodiversity and asked me to post this letter on my blog.

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Just finished NeuroTribes. Remarkable book – meticulously researched (so I thought) and delightful to read. Unfortunately, it has two critical errors of judgment: (1) you don’t believe there’s an autism epidemic (2) you believe we should focus more on adaptions and less on causes and cures.

I’m autistic myself, presumably Aspergers though never diagnosed. Didn’t realize it till I began studying the autism literature ten years ago. I’ve focused on its biochemistry and physiology, though entirely self-taught in the medical sciences (>2K pdfs). I’ve published several papers on autism in medical journals (republished at: ).

You demonstrate well that autism has been around for centuries, and runs in families. Clearly a genetic factor at work – one that contributes as much to society as it grieves children and their parents. I don’t argue with neurodiversity – I love my gifts – but like Pinocchio, I’ve always wanted to be a real boy.

I read your NPR interview: “Looking ahead, Silberman says that while much of today’s autism research focuses on finding a cause for the condition, society might be better served if some of the research funds were directed instead toward helping people live with autism. “I think that society really needs to do a bit of soul-searching about how we’re dealing with autism,” he says. “We need to get over our obsession with causes, because we’ve been researching the cause of schizophrenia for decades and we still don’t know what causes schizophrenia exactly.”

Were you misquoted? Since we haven’t yet found the cause of schizophrenia, we should stop trying to find the causes of autism?? Similar illogic taints your conclusion that there’s no autism epidemic. Yes, autism has been with us forever, and the newer DSMs expanded the criteria. That does NOT prove the actual incidence/prevalence of autism hasn’t multiplied in recent decades – masked to some degree by the new criteria! Biochemist Jon Pangborn concluded in 2002 – based on thousands of parents’ reports to the Autism Research Institute since the 1960s – that until about 1980, approximately 50–60% of autistic children were abnormal from birth, and 40–50% regressed into autism at approximately 18 months. “Around 1980,” Pangborn wrote, “all this began to change. The total frequency of occurrence doubled, doubled again, and by 1995 was approximately 10 times that of 1980. Furthermore, while the onset-at-birth type had increased 3 to 4 times, the onset-at-18-months type had skyrocketed to considerably more than 10 times its 1980 level.” Pangborn concluded that most of the autistic population now appeared to have “an acquired disease caused by something that we were not doing 20 years ago.”

Commander Steve Schultz (U.S. Navy) independently implicated 1980 as the year our autism epidemic began – when the CDC warned the American public that giving children aspirin could induce Reye’s syndrome, and everyone switched to acetaminophen (Tylenol). Fred Previc concluded: “The incidence of autism has risen 10-fold since the early 1980s, with most of this rise not explainable by changing diagnostic criteria.” Orlowski et al. compellingly debunked the association of aspirin with Reye’s.

Shaw recently corroborated Schultz’s evidence that acetaminophen is responsible for our autism epidemic, pointing out Cuba vaccinates all their children, especially against measles, yet their autism incidence is only 1/300th of ours in the U.S. What’s the difference, according to Shaw? Cuba prohibits over-the-counter acetaminophen, and only rarely allows acetaminophen prescribed for vaccinations, because acetaminophen is limited by the embargo. Bauer and Kriebel noted recommendations that paracetamol (acetaminophen in the UK) be given for circumcision. They also cited evidence that in the early 1980s about 42% of American women used acetaminophen during the first trimester of pregnancy: “The rate climbed to over 65% in the early 1990’s, where it has essentially remained through 2004.”

Evidence of an autism epidemic is critical for several reasons: (1) it implies specific causes, especially of autistic regression (2) enables prevention (3) argues autism is fundamentally NOT a genetic disease. Autism researcher Martha Herbert stated without qualification: “[Y]ou cannot have a genetic epidemic.”

You don’t inquire much into the biochemistry/physiology of autism, perhaps because the literature is huge and amorphous. Yet many observations are undisputed, e.g. brain blood flow is consistently low in these children despite frequent hyperexcitability. If you learned your brain blood flow was low – or your child’s – wouldn’t you want to know why, and what could be done about it? Or would you just ‘adapt’ to low brain blood flow? Viva neurodiversity! 🙂

Cordially,

Peter Good
Autism Studies
La Pine, OR
http://www.autismstudies.net
autismstudies1@gmail.com

References

Bauer AZ, Kriebel D. Prenatal and perinatal analgesic exposure and autism: an ecological link. Environ Health 2013;12:41.

Good P. Did acetaminophen provoke the autism epidemic? Altern Med Rev 2009;14:364–372. <http://www.altmedrev.com/publications/14/4/364.pdf&gt; [republished at <http://www.autismstudies.net>%5D

Herbert MR. Translational implications of a whole-body approach to brain health in autism: How transduction between metabolism and electrophysiology points to mechanisms for neuroplasticity. In: Frontiers in Autism Research: New Horizons for Diagnosis and Treatment. Hu V, ed. Singapore: World Scientific; 2014.

Orlowski JP, Hanhan UA, Fiallos MR. Is aspirin a cause of Reye’s syndrome? A case against. Drug Saf 2002;25:225–231.

Pangborn JB. Introduction to the diseases of autism and laboratory testing options. In: Pangborn JB, Baker SM. Biomedical Assessment Options for Children with Autism and Related Problems. San Diego, CA: Autism Research Institute; 2002.

Previc FH. Prenatal influences on brain dopamine and their relevance to the rising incidence of autism. Med Hypotheses 2007;68:46–60.

Schultz ST. National Acetaminophen Sales and Autistic Disorder in California. formerly at <http://pwp.att.net/p/s/community.dll?ep=16&groupid=389714&ck=>%5Brepublished at <http://www.autismstudies.net>]

Schultz ST, Klonoff-Cohen HS, Wingard DL, et al. Acetaminophen (paracetamol) use, measles-mumps-rubella vaccination, and autistic disorder: the results of a parent survey. Autism 2008;12:293–307.

Shaw W. Evidence that increased acetaminophen use in genetically vulnerable children appears to be a major cause of the epidemics of autism, attention deficit with hyperactivity, and asthma. J Restorative Medicine 2013;2:1–16.

29 responses to “AN OPEN LETTER TO STEVE SILBERMAN re NEUROTRIBES

  1. Great review! Unfortunately Silberman might managed to confuse lots of people with his half-truths, and I am sure big pharma loves to endorse his book as the final say on ASD. Thank you Peter and Mannie.

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  2. Peter seems rather contradictory here.I do not see how someone could both embrace neurodiversity,and want to see research continue into causes,of and treatments for autism.Perhaps Peter could elaborate on this further.

    I would argue that the mere fact those in the neurodiversity movement are willfully ignorant of current research into the causes of different forms of autism,negates most of their argument,and indeed the reason for the neurodiversity movement in the first place.You cannot claim to speak for all of those with autism,if you have no idea what autism is,beyond the symptoms described in the DSM.

    As for the link between autism,and Tylenol.I do not believe this is something that learned of this is something most parents,or even most doctors,are aware of.I only learned of this last year.I have also recently learned that women who carry certain types of mutations of RAD genes are more likely to have children with autism if their babies are exposed to x-rays in the womb.No doubt further reserarch will reveal more such causes of autism.I take issue with Martha Herbert’s statement about genetic epidemics.There is a growing body of science,that is showing that things like drugs a woman takes,or toxic exposures,especially while pregnant,can cause epigenetic changes that can result in disorders like autism,in the children,or indeed,grandchildren.There is still much to be learned about epigenetics,before we can make definitive statements,though.

    Peter also fails to mention the advances in treating and identifying autism due to underlying defects in folate,redox,tetrahydrobiopterin,and purine metabolisms.Or for that matter treating autism with other off label drugs,like statins,which work especially in autism with intellectual disability,or in Rett Syndrome.

    http://epiphanyasd.blogspot.com/2015/11/more-support-for-use-of-statins-in-some.html

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    • I appreciate the chance to elaborate on how it feels to be me, Roger. Sure it’s nice to be the smartest kid in the room – but not when the other kids don’t like you. A boy knows when he doesn’t fit in. I wanted to play football in high school, probably for the body contact. But I was too smart to go to the high school where the other guys at the boys’ home went, where they did play football.

      I believe in neurodiversity because it’s a reality – like a lot of autistic people, I’m very different and very special. It’s great being special when it’s valued, not so much when people treat me like a child (probably because I act like one). If I had my druthers, I’d rather be just one of the guys. Still, I am what I am; might as well make the most of it.

      In my work I focus attention on causes and cures in the spirit of Lewis Thomas, who said (The Medusa and the Snail): “. . . I believe that the major diseases of human beings have become approachable biological puzzles, ultimately solvable.” I don’t discuss treatments here because I’m commenting on NeuroTribes, which apparently doesn’t believe in them. But I personally have stumbled on the value of the amino acid citrulline to increase brain blood flow, so it seems. See my website.

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    • Roger, When it comes to the symptoms of autism that the DSM describes, any “smart” person could take the criteria, isolates him/herself during a week, say, and induces each one and all these symptoms in themselves creating a perfect autistic being at the end of the “experiment.”

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  3. Why do I get the feeling that everyone is missing the point in their response to Neuro Tribes and Silberman’s diatribe?

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      • The point is: we are talking about two very different conditions named under the same word (autism) only because American psychiatry is unable to conceive of a healthy eccentricity or a truly complex individuality. Asperger Syndrome has never been a type of autism, a subcategory, or a completely separate disorder biologically distinguishable from autism as neurologist Isabelle Rapin suggested. It is not even a disorder if you ask me. The confusion persists because people who have real autism (as I’ve had in childhood) are unable to reflect upon and express the nature of their condition. If there were more voices from the depths of severe autism, the psychiatric authorities all over the world would be today rethinking and redefining what autism really is about.

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  4. Well, this is your (and our) chance, Claudia. How many people recover from severe autism as you have – able to tell us what it felt like? Please do.

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  5. Roger,
    I asked Martha Herbert if an epigenetic epidemic is possible. She said it is possible, but would not affect everyone the same. She also said that blaming autism on epigenetics when our practical understanding of epigenetics is still so minimal hardly explains anything.

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    • This is a reply to Peter Good, I had asked Manuel Casanova this question also but want to hear from you:

      “I have a question, the predisposition genes for autism and schizophrenia, like many of their symptoms, do overlap, yet autism is increasing, so is schizophrenia but at a much slower and steadier rate. Why would enviromental triggers favor one over the other?

      Why is autism in particular increasing quicker and more rapidly than schizophrenia is? And why is the gender gap smaller in schizophrenia if predisposition genes overlap with autism?”

      If you have any insights, please share if you are willing, if not, disregard this question.

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      • The obvious answer is that the triggers affect different biochemistries (or genes) in these disorders. What those differences are I’m just learning, but as similar as autism and schizophrenia are, they’re also different – as your evidence of rates and gender differences shows.
        I’m troubled by so much funding going to impractical genetic studies of little benefit to these children or their parents – and so much money for testing ‘stolen’ from distraught people. I suppose genetic ‘researchers’ believe in their testing, but they should read Richard Lowentin of Harvard: “Geneticists, who are supposed to know better, will sometimes talk about a gene’s determining a particular shape, size, or behavior, instead of reminding themselves that if genes determine anything, it is the pattern of variation of a developing organism in response to variation in the environment.” It Ain’t Necessarily So
        Peter Good
        Autism Studies

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      • There are a few misanderstandings here due partly to the epidemic in digital thinking.
        The genetic causation of many cases of autism has been demonstrated as being very significant. It has not been so clearly demonstrated or it is less determining in schizophrenia. In neither is a mendelian mechanism the mode. Further, there is not a marker which can be used to ascertain diagnostics hence there is only evidence of increases in number of diagnostics not of the conditions themselves. Furthermore if you discount cases of psicosis in which severe sexual abuse in childhood or early use of drugs are factors, such increases of schizophrenia might not exist in the West.
        The genes that cause autism CAUSE autism or in smaller “doses” broad phenotypes which could be expressed in what used to be called personality disorders or sociopathies; some of those genes might PERDISPOSE to schizophrenia, but various other things also do.
        There is also new obssessions, for example with cleanness, that might play a part in causing some problems via psychological, digestive o inmunological mechanisms.

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  6. There are various contradictions which require looking at the wider picture and results particularly long term. I am talking here as a parent and retired professional, still in my old age learning about autism.. Sorry my english is somewhat rusty.
    I think it is essential that the evaluation of the disability is separated totally from the diagnostic of autism. Only thus you are going to be able to focus on true priorities to the individual affected and their families and end this dispute about what is autism. Would it make sense to gather under one diagnostic category, astigmatism, blindness and other eye sight disabilities? On the other hand if you think of coughing as co-morbid of pneumonia where would a common cold stand?
    The degree of disability though is not only due to intellectual deficiencies and needs to be taken seriously itself as due to the core symptoms of autism. But in my experience most of the so called co-morbidity is the expression of those core symptoms and an excuse to abuse supposed specific treatments for those co-morbid disturbances, drugs for example which are neither specific nor are backed by any evidence of effectiveness in either autism or the disorders supposedly here co-morbid. Take sometime having a look at what has come out in the last few years on antidepresants or antipsychotics. Visit MiA. Are you saying that the neurodiverse tribe are against the idea of disability but promote co-morbidiry? If so they are mistaken.
    The abandonment of hierarchical diagnostics and phenomenology for “tick a box” methods and the perverse logic of reimboursements and the promotions of Big Pharma is a context that super-experts ignore, sometimes quite consciously, and leads to a unstoppable drive,- via pro-cure marketing or anti-cure co-morbidity, it does not matter-, in which the affected even the mildly so, are not going to gain. Is it true that 3/4 of autistic sufferers reach 18 years on antipsychotics? If so many of them will add new diseases and disabilities to their autism, some will experience torture and will be emotionally chained and an important number will die, and their autism will not have improved if something will be worse. Please think of the Convention of 2006; take a look at the question of research and Nüremberg and how this is being by-passed . People like my son need adaptations, supports and inclusion, they need above all rights and for that I have doubts too about the pro-cure people.
    As for studies of autism, of course there should be, but what is the point of them if through the supposed epidemic the target is drawn to fit the hits, and the hits seem to be going all over the place? It is all fuelled by hopes that need to be reined otherwise corruption and cynicism will have the day. The truth is that we know already of external causes of autism, with consequences far less modifiable than in phenylketonuria: caesarean section, grand prematurity, postnatal jaundice, some drugs taken during pregnancy; perhaps as many as 20 per cent of all cases have external causes, no need of genes. Who is going to be the pretty boy to tackle that? Rather there will be masses of money spent in speculative research of an epidemic which is fundamentally GENERATED BY THE SUPPLY. And here illusions, and corporative interests act in a way which far away from the disabled autistic.
    Is mild TEA Asperger? Or a wider phenotype? Are they disabilities?. It depends, it does not seem so in Cuba, and I have known people in the charities movement, obvious phenotypes that have made a bunch of money, have good jobs, and are good at mending things something that I envy, although nowadays they might be a bit embarrassed for collecting toy soldiers, watching trains arrive etc. And some with their obsession with details and mechanisms and problems with reciprocity can be a pain in the neck for friends and spouses. But who has not got a phenotype of something or another. Mine is of the hyper-semantic kind, humor and humanities lets say, my son is a syndromic, prematurity an innumerable menaces to his life in the first few years. Nobody is perfect we all need to reflect on what we do, and reducing everything to genes does not help. I find people on the super range of TEA rather difficult, and I would ask you to take a different look at your pro-cure anti-cure dilemma. Take a look at the wider picture. And help me hang it proper in the wall, I tend to bash my thumb

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    • Whew! I see what you mean by “hyper-semantic,” Mariano. You’re obviously highly educated and familiar with medical terminology. I get what you mean by distinguishing the diagnosis from the disability. A friend considers me “neurologically clean” (no anomalies like seizures) yet my behavior is clearly autistic, and emotionally if not physically disabling.

      Beyond that, though, your style (not your English) is far too complex for me. You use lots of words with no obvious referents. What does this mean? “As for studies of autism, of course there should be, but what is the point of them if through the supposed epidemic the target is drawn to fit the hits, and the hits seem to be going all over the place?” What’s the target? What are the hits? How do we draw the target to fit the hits? How is the epidemic “generated by the supply”? Supply of what?

      If you’re just blowing off steam, that’s fine. If you want to be understood, pay more attention to clarity, not style.

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      • To Peter, you’ve done a good job of remaining calm and being civil when speaking to THAT. I commend you for that.

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    • Mariano, this blog could do without your arrogant, narcissistic, and bigoted comments. You are lucky people here are patient enough to put up with your long nonsensical posts. You have a horrible case of verbal diarrhea, I wonder how you relate to your patients. Maybe being professional when they are around but later thinking of them as degenerates or subhumans. And if you speak in real life as you write, I cannot imagine how insufferable and exasperating it is to even be in the same room with an arrogant self absorbed “little professor” like you.

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      • I do not know what is the purpose of your coming with this bag of insults now, my last comment was about two years ago. For the record I am most certainly not narcissistic or bigoted. I am quite normal in relation to friends and relatives what does not mean I am perfect. I am retired from my profession and one thing that is was clear in my mind when I retired 10 years ago was that I was freeing myself from diagnosing or doing therapy with anyboby: Freedom!. Perhaps I have overdone this or perhaps you are throwing at me a bunch of projections that belong to you and you do need help, Hans.
        There does seem to be in Americans a certain anti-intellectual attitude that makes debate difficult. In your case you seem to have reached a stage where you mistake your frontal lobes with your buttocks. It is the sort of dynamics that leads your country,, into a armed viscerality which ends up with people getting shot whilst praying o dancing, or to having some master of images and soundbytes like Trump running the show. Be careful, that is dangerous.

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  7. Target and hits. I read somewhere that in a town of the Wild West people used to paint targets around the hits so that it looked good for tourists. I think there is a name for that in science: Tombstone Saloon science or something like that. Of course you are going to find warped genes if you look hard enough , but the question is if there is a common pathway which is identifiable as leading to an autism well defined before hand, and this leads to treatment. And morbid categories need points of articulation to be meaningful and explain symptoms and developments, spectrums do not provide that.
    But even if a cause or common pathway was found, do you think that it would really impact on a disorder which in fact might not be active, but the result of a past process which has left defects in the wiring? How do you rewire the brain? And even if you could, are you sure you would like it? Oliver Sacks story of a mature man who is giving back his eyesight he lost in early childhood is telling in this regard: he did not like it. At most those treatments could act in a preventative manner in singular cases like that of phenylketonuria. Autism, Kanner´s one, is a disability which like blindness or paraplegia has many causes which are now inactive except for the “scars” left. The emphasis in management should be, as in those disabilities, that is environmental adaptations, orthopedic supports which in this case means humans that know about autism and are able to sustain relations which can be very unrewarding (read Theo Peeters Decalogue) and empowerment to defend their rights which at present are systematically ignored if not cynically violated.
    As for TEA’s, that is Aspergers and the wide phenotypes, I have no doubt that they exist, indeed I have had to put up with some, but what about putting some emphasis on social and psychotherapy methods which bear in mind the cognitive deficiencies and strengths you have? Some of us had to do things of that sort with the various phenotypes that God and epigenesis have given us and with time and effort we have managed to make some changes. I have been twice a chain smoker, I stopped once for twenty years and I am now on my second month of abstinence…, By the way do you know any TEAs who smoke?

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  8. Sorry Peter, I used the anagram TEA, an habit for I write from Spain; I should have said ASD.
    As for the question of the “epidemic generated by the supply”, it is a concept of economics. I think it might be a good idea to analyze the socio-economic consequences that ensue from that figure of 1/68, for those involved in the individual case and in general, in the USA and in the rest of the World. Teaching programs individualized supports, reinboursements for diagnostics, drugs etc. i understand that Adan Lanza had 7 diagnostics, (two of them TEAs) but no decent follow up and was given prices at school but had not gone to it for months. That is what happen with supply led economics if you are not careful: BUBLES, expensive and useless ones.
    Here we have it already with ADHD. Thousands of teachers, lead by supposed KOLs, are masking the failures in education with that “disorder”, all over Europe. And it is going to be much worse with ASD, as it will be the far more toxic antipsychotics that will be pushed. You will be amazed what the benefits for Big Pharma are going to be in China in a few years if the push towards that figure continues.
    Look at the wood Peter.

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    • I have trouble understanding your views on autism disorders. Do you believe the high end of ASD is merely a collection of behaviours that are concentrated, not an actual disorder but just a term made up for certain types of difficult people? Unrelated to LFA which is just a set of behaviours due to unrelated problems? There is no epidemic?

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  9. Hans,
    I believe whether these are disorders or not depends on how the person himself/herself feels, and those around him or her. To me, autism feels like an emotional disorder – not so much behavior (I manage to control my impulsive behavior in public fairly well) but “social anxiety.” I often say the ‘wrong thing’, especially when I’m anxious, which makes it worse.

    If you read my post you know I’m convinced there’s an epidemic. Also that autistic disorders have causes and mechanisms. It’s a real thing – altered physiology and biochemistry. What is LFA?

    What do you believe autism is?

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  10. To Peter Good,

    What idea is being realized in the claims of Neurodiversity? I am inherently at odds with those self-described “autistics,” who argue that the neurology of their brain is radically different and exclusive or who hold that the smallest crankiness of their stomachs are criteria for diagnosis in the spectrum of autism. Here is a quick example: What happens if your overriding concern in life is centered in the self? Well, in that case you might not be open to spending time with people who won’t agree with you in everything. You might be less likely to believe there are thousands of people who had had the same experience and don’t call themselves “autistics.” You might even begin to see other people as too ordinary – or worse objects – in your quest for upward uniqueness. Gradually you might start to see everything as revolving around you, what you believe your condition is, and desire to be different.

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  11. Unless you’re autistic, Claudia, I doubt you know what it feels like. I knew I was different by my impulsive behavior, ill ease around others, discomfort speaking. But I didn’t know that was autistic till I began studying it. I don’t think I’m “radically different” – just an extreme version of . . . ?

    Who is that self-centered person you describe? I’m like that, but it’s a common male ‘attribute’. Might be part of extreme male brain.

    Be less literary and more clear. I really didn’t understand most of what you said, except you think autistic people aren’t that special. Do you know one? Is he special?

    Peter Good
    Autism Studies
    http://www.autismstudies.net

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    • Dear Peter,

      I’ve been diagnosed with infantile autism when I was seven. I recovered and today I live with its effects.

      With due respect, in my humble opinion, the difference between Autism and Asperger Disorder (or self-diagnosis autism or autism diagnosed in adulthood) is like the difference between a heart attack and the idea of having a heart attack. In Asperger’s the autistic symptoms are the by-product of a great variety of psychological and psychosomatic reasons. They have a desperate need for attention, and do not accept the fact they are not meant for greatness.

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      • That’s your humble opinion? Hate to see what you say when you don’t like someone. Not meant for greatness? Isn’t that a bit of a generalization? How many Aspies do you know?

        I’ve never met an Asperger that I knew was. But I’ve read and written about them in my Unified Field Theory of autism at http://www.autismstudies.net

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