Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?

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  • Posted By: angied78 @ 11/03/2009 2:35:46 AM

    My son was diagnosed with PDD(autism), and I have a daughter with Downs Syndrome. I love them just the way they are. We do go to therapies every week, but its not for a cure it is so my children can function better. It helps them stay focused. Children with special needs are perfect. They just require more work. Most people are too involved with their own dreams of perfection to understand special needs children have the right to be.. born, loved, and respected.

  • Posted By: Nubian Queen @ 05/18/2009 2:08:55 PM

    I am glad that Ne'eman is able to work and be an advocate for himself. However, my daughter cannot, and she knows she's different from the other kids in her class. She wants to fit in but can't and it makes her sad. As a parent it breaks my heart to see the other girls talking about slumber parties and boys and my daughter is not invited due to her issues. I am for finding a cure, and I am for better services being provided to autistic individuals. To the fool who keeps throwing homosexuality into the discussion you need to stop. You are trying to divert attention from the discussion about autism.
    You want to discuss homosexuality start your own thread and we can talk. I am pro gay rights and believe there is no cure for homosexuality. Now, moving on......

    • Posted By: SuzakuIngolme @ 10/23/2009 10:36:45 PM

      You....

      Are pro diversity-of-identity, and you'd probably attack me for my religious beliefs concerning that.

      Are NOT pro neurodiversity.

      Would you want a cure for your daughter.... If she was gay?

      Not by the sound of it. You sound as though you'd fight for her social liberties. Yeah, and she's gonna love her fifteen percent chance of getting a job once she grows up. YOU could have changed that. You could have changed the way society views people like your daughter, but you waited for something to come along that you could use to make your daughter fit to normal society. It never came. You ought to be supporting her person, rather than hoping for a cure that may not ever come. Teach the kid to stand up for herself. Teach the kid to be emotionally strong. She'll have less reason to come home depressed, either very mildly now, or much worse later on. If YOU seem to believe she's defective, SHE. IS. GOING. TO. BE. DEPRESSED. Do what's right by your child! Love her, and make her strong but moral.

  • Posted By: calamityjohn @ 05/18/2009 6:10:00 PM

    My son is 16. He is non verbal and diagnosed to quote his psych with "10/10 low functioning autism." To over generalize he functions at about an 18 month old level.

    When my son was first diagnosed and we used the word "autism" in common conversation I began to realize that the film "Rain Man" was the basis of relation to that word in most people I spoke to ... they associated the autism with echolalia, savant traits, etc.

    As time has progressed and autism diagnosis has become more common (especially high functioning autism diagnosis) and as the "autism spectrum" has become such a broad place I believe the societal perception of the term "autism" is changing to match more closely people such as Mr. Ne'eman. This is not to diminish the challenges and struggles that people such as Mr. Ne'eman face .. but they are very different challenges and struggles than those of my son.

    At this point I typically describe my child as "severely developmentally disabled" ... the spectrum has become so wide that the word "autism" seems to mislead people more than provide clarity.

    My fear about Mr. Ne'eman is that he seems to be taking it upon himself to become the spokesperson for and representation of "autism" .. and that by doing so he purposely or inadvertently threatens to trivialize the struggles of those who face a much different set of challenges than he faces at a time when those who face those challenges need much more than to be typecast as "quirky" or "different."



    • Posted By: SuzakuIngolme @ 10/23/2009 9:59:16 PM

      "As time has progressed and autism diagnosis has become more common (especially high functioning autism diagnosis) and as the "autism spectrum" has become such a broad place I believe the societal perception of the term "autism" is changing to match more closely people such as Mr. Ne'eman. This is not to diminish the challenges and struggles that people such as Mr. Ne'eman face .. but they are very different challenges and struggles than those of my son."

      How different? Quantity. Sensory/Focus issues. I'm hoping that I can find a medicine that will eliminate the ISSUE in this. Only the issue though. It is stupid to quantify value simply on social capacity, with no regard to other capacities. I want the issues gone! Not the traits.

  • Posted By: cycle3man @ 06/09/2009 2:11:12 AM

    Autism and its spectrum disorders is a recent phenomenon, appearing 30 to fifty years ago. It appeared that the number of cases increased in proportion to the increase in the number vaccines developed and mandated increased. Once a normal developing child was struck the lives of the entire family and in many cases, the lives of the extended families were devoted to the needs of the effected child

    There are vast amounts of money to be if a newly developed vaccine is approved for world wide mandatory use. The agencies responsible for testing and approval are overwhelmed by the task. Tremendous pressures are brought to bear by the developers of new vaccines on the agencies responsible for testing new vaccines for approval. Many studies were farmed out to European countries whose vaccine formulation and delivery were different than those in the US. The testing that the parents of damage children suggest were disregarded. One example, a study comparing the number of children to be on the Autistic spectrum after receiving the mandated vaccination protocol, compared to a cohort of unvaccinated children.

    I donot want to drag on but there are a few other questions that the parents raise that are ignored by the responsible US Government Agencies

    Why aren???t children tested for reaction to vaccination prior to vaccination?

    Why isn???t vaccine packaged in single dose vials so that toxic preservatives would not be necessary?

    Why is a dosing of ???One size vaccine dose for all regardless of age, weight and/or development????

    Why the absence of testing for the possible negative synergistic affect between vaccines?

    Why doesn???t the government agencies look at the parents as the enemy and never invite knowledgeable parents to be represented on over site meetings and committees?

    Why does the Government agencies hold secret meetings and fail to make the minutes available to all? An example was the two Simpsonwood Secret Meeting one of which was held on June 7-8, 2000.

  • Posted By: cmarsh @ 05/29/2009 2:36:24 AM

    Some of us introverted, pessimistic Aspies are a predatory lender's worst nightmare. A couple of years ago I was paying $800 something a month in rent and my mortgage on a $200,000 condo would have been $1,200 something a month (not counting the fees to cut the grass). Yeah sure there is a mortgage rate interest deduction but how long does that last? You got a 30 year responsibility to fix the damn place and you're committed to the area?

    I kept renting. I don't know. Rent is now $1,100.

    I'd ask myself a few questions before I'd commit to homeownership

    1. Am I going to live here for 30 years?
    2. What if I marry a woman who has her own place?
    3. This might hurt my ability to relocate to take jobs. My brother values extreme freedom. I think he has month to month, and though he does not exercise the right, he could be in Seattle, San Francisco, or Charlotte in two months.

    4. What do I get out of it if I do buy?
    a. interest deduction
    b. price trajectory
    c. HELOC option

    5. What am I responsible for
    a. the mortgage, nitwit!
    b. the fees
    c. the property taxes
    d. the mortgage insurance
    e. property insurance
    f. consider flood insurance

  • Posted By: babblerem @ 05/28/2009 5:49:41 AM

    Diagnosis -

    They told me you were differen - autistic
    I told them I was optimistic
    How could they know
    I love you so
    Because you are - DIFFERENT

  • Posted By: qfazeem @ 05/22/2009 10:56:58 AM

    Autism is evolution. The sooner the world accepts it, the sooner we can move on to greater things.

    Qazi Fazli Azeem
    Asperger from Karachi, Pakistan
    www.autismpakistan.org
    www.fazliazeem.com

    • Posted By: babblerem @ 05/23/2009 6:13:41 AM

      Thank you so much for your comment. As the mother of an autistic man I so agree with you, but when I made a similar statement in the past no-one seemed to agree with me. I am glad at last to see someone has the same insight. My son, himself, has said (half-jokingly but I believe true) 'Mum, my mind is more like a computer than a human being's, isn't it!'

      • Posted By: cmarsh @ 05/23/2009 8:32:36 PM

        I said the same thing at 23, with respect to pros (data handling) abd cons (social skills).

  • Posted By: anniepema @ 05/16/2009 4:52:12 PM

    Many with autism spectrum suffer greatly. Older paternal age is a major cause.

    • Posted By: babblerem @ 05/23/2009 6:17:30 AM

      You are so right. I worry as I am now 82 and my son is aged 55. We have no living relatives and it is such a worry about how he will cope when I die.

  • Posted By: cmarsh @ 05/23/2009 3:28:11 AM

    Actually I didn't make it perfectly clear that disabilities can hit you like a lightning bolt out of the blue, if God wanted you to, if you got very sick or were in a severe accident. When I said car accident I meant brain injured child for the rest of his or her life, being 6 months old for a lifetime. No kids? Your spouse or significant other could, too. Would you stand by your family member or would you "turn them off?"

    Disabilities usually occur because you get older. Body systems start failing and not working like they ised to. Mom's macular degeneration, osteoporosis, and loss of hearing and my erratic blood glucose control: signs that eyes, bones, ears, and pancreatic systems (the last one with some dietary abuse as well) all go haywire with age. The arteries can harden because of age even if there is no dietary abuse. Risks for stroke, heart attack from cholesterol coating the blood vessels.

    Pregnancy is even a disabling condition, especially if bed rest has to happen. Mom had to for both of us,

    We don't have as many diseases nowadays that can leave you blind or deaf if they don't kill you (polio is almost completely eradicated on Earth, for example). But we have cars, and car crashes, violent crime, sporting accidents, etc. And don't forget our soldiers. We save more lives in combat than we used to, but the survivors have disabilities, and not just missing limbs, but injuries to the head as well.

    America has about 54 million disabled people and if you or a loved one weren't born into it, you could join it, there but for the grace of God.

    Fortunately autism and Asperger seem to show symptoms at about the same time, toddlerhood. You get past that stage, you're lucky. You have one less possibility to worry about.



  • Posted By: TWforDL @ 05/23/2009 1:03:47 AM

    I admire Ari Ne'eman's spunk and determination concerning embracing his true self -- Asperger syndrome and all. But to be against the study of the genetics of autism only means we will be further from understanding autism spectrum disorders -- and even possibly finding a cure. As the mother of a 14-year-old boy with moderate-to-severe autism, I can only say that not all people with an autism spectrum disorder are as high-funcitoning or self-aware as Ari. My son has great difficulties coping with life. I am for anything that will help us understand him, and future generations to come.

  • Posted By: cmarsh @ 05/22/2009 8:19:27 PM

    Trying to have a child with a guarantee of no tragedies is every bit as stupid as guaranteeing investments against risk. Tragedy is a part of life and risk is a part of investing. Welcome to adulthood.

    Now I happen to believe in salvation and a Heaven.

    Maybe that is why we need to believe in a Heaven. If it isn't always going to be OK here, maybe it helps to know it will be OK, later, in the hereafter.

    No, I seriously doubt I would have children now. It could be an irresponsible act if it adds one or more special needs people to America. Also that every additional human being, and especially every extra American, consumes world resources at a fantastic rate. I would make a countersuggestion to whomever woman I marry that there are thousands of children who will never have a mommy or daddy.

    How sad you would give away your child, for what, a day, a weekend, a lifetime? I think you would come to wish you hadn't done it.

    But I've never had your experience. My parents never thought they had autistic kids. Emotionally disturbed, behavior problems, ADD, some clues to possible giftedness, but Asperger (autism spectrum) diagnosis at 25 was a bit of a shock.

  • Posted By: cmarsh @ 05/20/2009 10:41:21 AM

    41904, having a baby IS playing Russian roulette. Anything can go wrong. There could be a birth injury or something, being run over by a car. Things happen. Blame God if you like. If the autism doesn't get you something else might like childhood cancer. God never promised you a rose garden.

    People who can't bear the thought of having an autistic child should go on the Pill and adopt a kindergarten-age child, at least they know what they are getting.

    • Posted By: 041904 @ 05/22/2009 4:31:08 PM

      That is a ridiculous argument. By your definition no one should ever have any children because obviously there is always the potential for tragedy. I guess I should know better than to get into a debate that is based on the acknowledgement of someone else's emotions with an Aspie. You love autism so much, I'll give you my address and you can come pick up my daughter. Good luck making it through a day with her. You don't speak for me or anyone else that has severe autism in their life, so stop doing so. Not all of our kids are quirky little geniuses. Some of these kids would be walking around bloodied and feces-covered if they were left to their own "neuro-diverse" devices.

  • Posted By: Myownname @ 05/22/2009 1:33:10 PM

    I hope Ne'eman understands that he does not speak for my son, who talks of his life in two segments: "before HBOT," and "after HBOT." Before hyperbaric oxygen therapy, he was an 11-year-old who could not snap his own pants after using the bathroom at school or speak in a sentence that ended, or most people could understand. He once threw a chair in the principal's office, in frustration, then ran away.

    He seemed to be asking very intelligent questions, but I could not understand them. Now, almost 13, he continues to be treated in his school's autism program, but is also in the gifted program. He is known at school for a sense of humor far above his age level and his great attitude. He can groom himself, and we hope someday will be able to use money. He is very gifted in history, politics and sciencel. Now he can tell you all about the czarist Russia. He is slowly, over months, learning to do the dishes after dinner.

    Most heartbreaking for us, he remembers the past with an almost unbelievable precision, and can tell us what he was trying to say and do so many times in the past when we didn't understand him. He would never go back.

    Autistic people like Ne'eman are very lucky and rare.

    • Posted By: Sorrior @ 05/22/2009 4:28:39 PM

      I sadly must disagree with this idea. I myself have ausbergers syndrome and i must say that even with all the hardships i've had i wouldn't change a thing. Now i to hvae had trouble in school mainly sith staff not understanding me but i still wouldn't change things. Also has it ever occured to the people who do all thes genee based abortions that they could be detramentally altering the potential for human evolution. Now i'm not saying autism is the next phase in evolution but it is a distinct possibility. So i say no i don't ant a cure i don't want my kin to die out. Oh and the fact is that even the "retarded" kids wih autism probably arn't it's just another fallacy brought on by differences look up research on iq tests and autism the funny thing is we just do better without help rather than with the normal; type of iq test. I have had a hellsh childhood but would not change it iam better at night than day but wouldn't change it. Somehing tells me your son had so many issues because no one understood him more than anything but that's just my guess. Well that's my view as someone WITH autism now your son has it but if he mainly talks about peple now unerstanding him maybe you should ask him about his other thing. Well that';s waht i get anyways. Sorry for the poor spelling and grammar i should be asleep right now. Kinda glad i ahd to make an account nbecayuse i fogot to mentiaon in my original idea that a friend and i feel like we'e mutants from X-Men with som eoe,k wanting us gone other s wantinga cure and with no real place of our own or for us personally i wish we had an autistic version of IIsrael Where we cod be free to be ourselves hell i think even a private school for us would be nice.

  • Posted By: cmarsh @ 05/22/2009 4:01:25 PM

    It could be a long time before any male Aspie or HFA becomes a pzrent. in the WIRED article I cited below, Dr. Temple Grandin recommended that the best relationships would be between two neurotypcal or two autistic/Asperger adults. Otherwise it would be impossible to make the other partner understand what it is like to be NT/autistic/Asperger.

    Of course there are mitigating factors for every Aspie. In my favor, I create friendships with women without even trying. I have intelligence, character, personality (when depression is under control), and a sense of humor. Working against me, I losing weight but still, for the moment, morbidly obese (100+ pounds overweight).

    If you wait too long before having kids you start running into risk factors for autism such as paternal age, on top of genetic predisposition. I am 39, slightly older than my dad when I was conceived. It is just as well, I am not sure I'd put up with an average child, let alone an autistic spectrum child.

    Perhaps we need a monastery. The Order of St. Asperger?

  • Posted By: babblerem @ 05/22/2009 11:57:40 AM

    I do so agree with Ne'eman. My son is 55 now and a computer science university graduate. He could not speak until he was about 9 or 10 and doctors told me, 'He is a write-off', 'stop sacrificing yourself', place him in an institution and forget him'. It was not funny at the time, but it is now when I look back it is. He was a little heller when he was a child, especially as I had to work full-time to support us. I was always exhausted and people used to look down on us in those days. Nowadays he is wonderful company and neither he nor I would want him to be 'cured' of autism, because then he would no longer be him. We both became hooked on computers and the Web and it has made a great difference to our lives.

  • Posted By: Stacey56 @ 05/22/2009 11:40:32 AM

    I wonder what Mr. Ne'eman would think if he were a parent? That's a question that he can't even think about until he is one. His thoughts might change.

  • Posted By: cmarsh @ 05/22/2009 11:39:51 AM

    Yes, Qazi, and to finish your point, autism is good for human evolution because the human race has evolved into high tech and computers.

    Now I have been on http://www.aspiesforfreedom.com for years and not every Aspie claims to have special powers, but enough do that have "math and science" genes (plus those in engineering and computer technology). That has high tech and computers written all over it.

    http://www.wired.com/wired/archive/9.12/aspergers.html

    It is a pity that we have applied the very best of our technology into killing one another, notably nuclear weapons and the amazing conventional weapons: drone aircraft, radar low-observable aircraft, precision ordinance (although it has saved civilian life) . Some of these have civilian applicatons: GPS, the fact that Life Flight originated out of MASH medevac helicopters in Korea, the many civilian purposes of radar (notably air traffic control) after World War II.

    At any stage of human civilization the inventors are probably high functioning autistics or Aspies. Conjecture has it that humanity on Earth has developed and used technology before (nuclear weapons in Mohenjo-Daro and Harappa, according to strange archeological evidence cited by Charles Berlitz), only to forget it and rediscover it later.

    Let's not kill the inventors, shall we?

  • Posted By: cmarsh @ 05/22/2009 12:18:55 AM

    The difference between eradicating smallpox and eradicating autism is that Johnny can be a person with smallpox or without smallpox. Autism is not an infectious agent or a something that can be removed, it is hard wired into the human nervous system. It will never come out. You are stuck with it, the best you can do is learn to cope with it whether you are that person or whether you work or live with that person. There can never be a World Health Organization eradicaton of autism, autism is not portable.

    If you still think vaccines are to vlame, read this. It suggests instead that Johnny with HFA meets Jane with HFA at High Tech Inc. fall in love and have a kid, maybe as bad as they, maybe worse. It's not mercury or better diagnostics, it's the birds and bees.

    http://www.wired.com/wired/archive/9.12/aspergers.html

  • Posted By: Learntek @ 05/21/2009 7:57:59 PM

    This is an excellent article for those who need to follow this disease

  • Posted By: Greg the Third @ 05/21/2009 2:00:01 AM

    I think Ne'eman is being a little too self-centered in his argument. Not all people with autism are functional even with the best support systems in place. It takes an enormous toll on the parents and the school system. I do not believe that all of the cases are natural consequence of evolution, rather most likely are the result undiscovered effects of toxins in the environment. In that respect many cases of autism may be unnatural and I think curing it by eliminating the source of the problem in the environment and treating those effected is morally imperative. I agree like probably everyone else that genetically engineering a phenotypic variant out of the gene pool limits biodiversity and will harm civilzation and possibly evolution as well. I believe that the egrigously heinous acts of "racial purification" by the Nazis have thoroughly discredited such eugenics practices in the Western world for centuries, but we should be on guard against any kind of resurgence of that kind of thinking. High functioning autistics or people with autistic traits tend to be highly successful intellectuals and often contribute major advances in their respective fields in both arts and science, which are the very measures of success in any civilization. Like any other nation, its long term success is often measured by how well it supports and develops the potential of such intellectuals and Ne'eman is right in that it pays to cover the inital cost of turning these individuals who are dysfunctional in childhood into functional adults. I think that in certain cases genetic screening and selection can be justified, such as if a couple is found to have a very high chance of producing a low functioning autistic offspring.

    • Posted By: DadofASDkid @ 05/21/2009 9:18:52 AM

      Greg, I agree with most of what you said here. However, evolution shouldn't even be considered here. Here's the reason: Evolution logically leads to devalueing human life to the level of animals. Once you do that, it is much easier to weed out disabled people (autistic, Downs, etc) before they get a chance to be born. You've seen the nature programs where the alligator takes down the weak and defenseless wilderbeast, or where the lions catch and devour the sickly looking gazelle. You then hear the narrator of such programs remark how this is necessary for evolution to eliminate the weak for the good of the species. This is essentially what Hitler and all those (like Stalin and Mao) who came after him believed.

      Conversely, a young 30 something teacher around 25-30 AD stated that we (humans) are much more valuable than the animals and birds that live around us. If only more people would come to realize that, there would be a whole lot less chance of racial purification campaigns happening; along with people being aborted, or even infanticized for having "defects". Think about it... our modern day eugenics didn't come about until after evolution became known and established. Think about it!

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