Perhaps this time I’ve gone too far….

19 May

OK, it isn’t me that’s gone too far this time. It’s Alison Singer of the Autism Science Foundation. Here’s her message:

What won’t I do to raise money for autism research? This time, I’ll be riding on the back of a motorcycle from Rockville Centre NY to the Montauk Lighthouse with the AML Bikers for Charity, who have chosen to support the Autism Science Foundation with their ride again this year on June 13. Am I scared? In a word, YES!. But not as scared as I am that we are not funding autism research fast enough. Having just returned from the International Meeting for Autism Research, I am more optimistic than ever that we are on our way to finding new treatments and eventually a cure for autism, but there is still a lot of work ahead of us and we need your help.

Please sponsor me as a rider in the AML Bikers for Charity by clicking on this link and then clicking the “donate” button underneath the thermometer. Your support will mean more funds for research that will make a difference for individuals with autism and their families.

The Autism Science Foundation is a 501(c)3 public charity. Donations are tax deductible to the full extent allowed by law. Learn more about ASF at www.autismsciencefoundation.org.

Here’s the donation link again: https://ssl.charityweb.net/autismsciencefoundation/activities/alisonsinger.htm

Want to join the ride? Click here to learn more and register as a biker.

Thank you so much!

Alison

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32 Responses to “Perhaps this time I’ve gone too far….”

  1. Kassiane May 19, 2011 at 09:39 #

    And here I am terrified about the world that people are creating for me by saying people like me should be cured/prevented.

    Psht. Riding a motorcycle is nuthin’. Existing in the world where cures and tragedies dominate autism discourse, THAT’S terrifying.

  2. McD May 19, 2011 at 10:14 #

    Kassiane, don’t get wrapped up in the cure/ prevention circus.

    I am an autistic, with a severely autistic child. In so many way I am able to interpret for my son when I represent him in IEP meetings.

    As an autistic person i am aware of the need to attempt to represent our nonverbal fellow travelers.

    But we never can represent everyone completely. While writing this this, I realized how much this issue meant to me. This has been a tricky one, I have the keyboard on my lap and because this has affected me I am rocking and typing. I rock and then type and then use the spelling feature. But when I am at work, or giving a lecture, it (my disability) would never be apparent, because I have learned my material to the point that I can stand up and deliver material that I know quite fluently.

    But when I am trying to think of stuff to communicate it can can take ages, and quite a lot of rocking. Thank god the spell check.

  3. lilandtedsmum May 19, 2011 at 10:14 #

    I must admit – I was non too impressed with the use of the word “Cure” too. I feel it’s important to research autism and to do everything possible to increase our understanding, but talk of cure makes me feel uncomfortable to say the least….

  4. Theo May 19, 2011 at 16:37 #

    Every time I hear the word cure anymore I just roll my eyes.I don’t want one, I don’t need one, and if one existed I wouldn’t care about what anyone thought of my refusal. I have challenges and gifts from my autism. I refuse to give up either of them just to fit what society says is the ideal. Truth is, the ideal insn’t the ideal. I just let people who do things like this brush off me. My only thoughts are for their children. In their desperate search for a cure, what their child wants and thinks is often disregarded.

  5. Aletheia May 19, 2011 at 19:11 #

    Is this the same Alison Singer who the Hub and the disability rights community were protesting five years ago over the things she said in (and about) that infamous “Autism Every Day” PSA?

  6. jre May 19, 2011 at 19:48 #

    Done! I’d been saying I’d give to ASF for a while now, and this was the stimulus I needed. Thanks, Sullivan and Alison!

  7. McD May 19, 2011 at 22:48 #

    I should have said further up, I am all for more research.

    I don’t think there is a ‘cure’, it’s a poly-genetic syndrome. It always has been, and always will be a present in our communities. But there may be environmental factors that contribute to manifestation or severity of symptoms that we can do something about. And ways of improving learning and communication that we need to research as well.

  8. Sniffer May 19, 2011 at 23:11 #

    Dear Mc D,

    “It always has been, and always will be a present in our communities.”

    Autism your right but never ever, seen in the pandemic numerical autistic proportions we perceive today.

    Sincerely

    Sniffer

  9. Kassiane May 20, 2011 at 06:15 #

    Alethia: It is. This blog has been more and more uncomfortable to read because of that knowledge–I don’t forgive as easily as the contributors, I guess. That’s one of those things that doesn’t wash away.

    And I think ‘cure’ is a silly word, it makes it sound like there’s an injection in the rainforest or something, just waiting to normalfy all us abberants. What ‘cure’ actually means is ‘prevent’, the same way they ‘prevent’ Down Syndrome.

  10. David N. Andrews M. Ed., C. P. S. E. May 20, 2011 at 08:17 #

    “What ‘cure’ actually means is ‘prevent’, the same way they ‘prevent’ Down Syndrome.”

    Well said, Kassiane.

  11. Sullivan May 21, 2011 at 01:23 #

    I knew when I posted this that the focus would be on the single word: cure. I won’t speak for Ms. Singer about what her views are on the word other than to say that they are not what is being projected upon her.

    If nothing else, I think it would be a logical leap to claim that she means “prevention”. She has a child (young teens, I believe) and a brother (middle age?) who are autistic. Prevention isn’t exactly in the books for her, now, is it?

    At IMFAR, I heard the cure word used in a lot of different contexts. And I heard more than one use of doom and gloom language. Unfortunately, the two are often used together, the doom and gloom to justify (or even demand) the cure, and the cure in the strictest sense.

    I also heard a lot of “cure” to mean alleviate some of the disability.

    As I’ve said a number of times, I’m growing tired of the cure debate. It causes a lot of division, and it’s an academic debate. There isn’t a cure. There isn’t one in trials. There isn’t one even in theory.

    I do feel very strongly that a person is neither better or worse for being autistic. Just different. I feel very strongly that autism or the lack of autism is integral to a person’s identity. What more is there to one’s identity than how you think? (aside, I miss the Diva with her tag line: Autism, it’s not how you think). I also feel very strongly that if there were a cure, the lack of acceptance in our current society would constitute coercion, pushing some autistics to seek a cure to avoid stigma and abuse.

    I’m getting old here, I admit it. I’m not waiting for everyone to agree with me, or everyone to be forgiven or forgive me. I figured I’d get some heat for putting up Alex Plank’s interviews from IMFAR, given that a number of them focus on people from Autism Speaks. One of them is Peter Bell. I’ll point out, I went up to Mr. Bell and told him I’d like to be more involved with INSAR/IMFAR. When I handed him my card, he took notice of the fact that I write for LBRB. My guess is he knows I’ve been critical of Autism Speaks (I wrote about the “I am autism” video at least three times, for example). I’m not waiting for him to forgive me for any slights he may feel I’ve made to his organization. I’m not asking him to apologize for the video. I was pointing out that I’ve got skills and energy to apply to those issues where we agree. Am I saying I’ll never be critical of Autism Speaks again? No.

    I’m not brushing this aside. One person whose opinion on ethics questions I highly respect (and this person I highly respect in general) has not forgiven Ms. Singer for the “autism every day” video. I really hope that person will continue to educate me on ethics questions, even though we are diverging on this point.

  12. Kassiane May 21, 2011 at 05:25 #

    I’m another person who will never forgive Ms Singer for the “I wanna drive my kid off a bridge” video.

    Never, never, never.

    You don’t *say* that. And you certainly don’t say that so publicly and then never acknowledge that you said something drastically unacceptably wrong.

    You may recall that just after That Video came out, several autistic children were killed. Like, within days? One of those cases was written about here a lot. I hold everyone involved in the making of that video partially responsible.

    And I hold everyone at autism speaks, present and past, responsible for the state of ‘awareness’ today. Every one of them. “Awareness” today is pretty crappy. Please, ask me about my “aware” community college PE teacher.

    And finally, if by ‘cure’ what you really mean is ‘work towards ameliorating some of the difficulties, and get real wild and maybe even have the world give a bit too for once’, say that. Cure means something totally different.

    • Sullivan May 23, 2011 at 06:27 #

      Kassiane,

      a few points I want to make clear. I don’t communicate well, so I want to make sure I make these points.

      First, keep in mind that I have a ton of respect for you. I know this is a painful subject.

      Second, be assured that I am not asking or implying that you should forgive anyone on any schedule other than your own.

      Third, I’m rather literal too in how I define “cure”. But I am finding that for a number of people, the definition is more loose.

  13. RAJ May 21, 2011 at 13:09 #

    If you want to understand Alison Singer’s Autism Science Foundation’s agenda for autism is and want donate to this foundation it is important to understand exactly what agenda’s the Autism Science Foundations does financially support.

    The Autism Science Foundation embraces genetic determinism, translational medicine and collaboration between genetic determinists and the pharmaceutical industry which may lead to ‘cures’ for autism . Ms Singer has aligned herself with such genetic determinists as Yale’s Dr. Fred Volkmar and Dr. Joseph Buxbaums of Mt. Sinai who is all out for transational research. The behavioral geneticists and genetic determinists consider the role of environmental research to be given either (a) given lip service or (b) a nuisance to be ignored.

    What is ‘genetic determinism’?

    Genetic determinism is the belief that genes determine physical and behavioral phenotypes. It is usually taken to mean “that the genotype completely determines the phenotype, that is, the genes completely determine how an organism turns out” or that “genes alone determine human traits’.

    What is translational medicine”

    ‘What is translational medicine? This discipline, although defined differently by various groups in academia, regulatory institutions, and industry, shares the fundamental vision of translational medicine, which is to efficiently and effectively translate basic scientific findings relevant to human disease into knowledge that benefits patients. Pfizer was one of the first pharmaceutical companies to embrace experimental medicine and translational medicine as a recognized discipline within the sphere of early drug development, and this author was intimately involved in the evolution of this discipline since its inception at this company. This chapter therefore describes the significance, role, and practice of translational medicine in drug development from a Pfizer perspective, although the concepts are considered to be widely applicable to drug development at any academic, public, or private institution. At Pfizer, translational medicine was defined as “the integrated application of innovative pharmacology tools, biomarkers, clinical methods, clinical technologies, and study designs to improve confidence in human drug targets and increase confidence in drug candidates, understand the therapeutic index in humans, enhance cost-effective decision making in exploratory development, and increase success in Phase 2 leading to a sustainable pipeline of new products.” Because this book focuses on drug development, this will be the definition for the purposes of this chapter’:

    http://ebooks.cambridge.org/chapter.jsf?bid=CBO9780511976087&cid=CBO9780511976087A010

    The Autism Science Foundation believes in the alignment between genetic determinists, translational medicine believers and pharamceutical companies will deliver ‘cures’ for autism, then this organization is one you might want to support.

  14. Tom May 21, 2011 at 16:09 #

    Identifying and understanding the molecular mechanisms that underly a disease or disorder and developing rational therapies to ameliorate or overcome their consequences is an overarching goal of medical science. It’s not a belief nor is it the exclusive domain of pharma. Calling molecular geneticists “genetic determinists” is a bit like calling environmental researchers “genetic deniers”. ASF is like any other medical resaerch foundation. It supports the best available science.

  15. Kev May 21, 2011 at 20:23 #

    Do we let this work itself out in the comments of this post or start a brand new post on the subject? I think the latter. Others?

  16. David N. Andrews M. Ed., C. P. S. E. May 21, 2011 at 21:03 #

    New post, Kev.

  17. brian May 22, 2011 at 03:25 #

    A restart seems reasonable.

  18. RAJ May 22, 2011 at 15:45 #

    I could give you a laundry list of failed translational medicine drug therapies for treating autism but will list only three of importance because they were all the brainchilds, not of ‘quacks’, but of leading authorities in the field of autism who have served on editorial boards of leading peer reviewed medical journals devoted to autism research.

    Loretta Bender, one of the early pioneers in autism research and considered to be the leading authority in the field in the early 1960’s found LSD treatment of autism produced remarkeble gains in improvement. Never replicated in independant clinical trials.

    Edward Ritvo, a leading autism researcher found remarkeable improvement using fenfluromine as a first line treatment in autism. Dozens of independant studies published throughout the world found no improvement in controlled trials. Ritvo later admitted to receiving substantial honorariums from the manufacturers of fenfluromine. Fenfluromine was eventually withdrawn from the marketplace after it was linked to heart valve defects.

    A year ago, the use of Prozac in toddlers as young as three years old with autism, was found to have no effect compared to controls:

    http://insciences.org/article.php?article_id=2522

    The promoter of this therapy is Eric Hollander, a major figure in autism genetic research and a member of the Mt. Sinai genetic research institution which receives support and funding from the Autism Research Foundation. Eric Hollander also owns a ‘patent’ on prozac for use in the treatment of autism.

    It is rather amazing that the promoters of quack therapies (Lupron, secretin, hyperbolic therapy, Facilitated Communication, LSD, Fenflouromine, Prozac) when they conduct their own clinical trials always report positive results. A true believer seems to have a placebo effect that they want to see and always does for whatever quack therapy they are promoting and when independant large scale trials are conducted, the results never replicate the clinical trials conducted by the promoters of the therapy.

  19. Tom May 22, 2011 at 18:03 #

    None of the examples you cite have anything to do with translational research. Here’s a very good example:

    http://www.ncbi.nlm.nih.gov/pubmed?term=Partial%20reversal%20of%20Rett-Syndrome%20like%20symptoms%20in%20MeCP2%20

  20. RAJ May 22, 2011 at 18:15 #

    I am wondering how I might get funding from the Autism Science Foundation to conduct a translational research trial to obtain a patent and conduct clinical trials for the use of medical marijuana as a treatment, even a cure for ‘autism’.

    Simon-Baron Cohen is promoting his theory of high levels of testosterone as a cause of autism. A well designed clinical trial has found that smoking five marijuana cigarettes a day substantially lowers testosterone levels in adult males.

    http://www.time.com/time/magazine/article/0,9171,913480,00.html

    I am thinking of applying for a patent for the use of medical marijuana products for the treatment of autism in males. For toddlers I would like to patent marijuana laced Brownies as an autism treatment even a cure since it reduces testosterone levels by a third in adult males.

    CC the Autism Science Foundation

    • Sullivan May 22, 2011 at 19:06 #

      RAJ,

      using your–I hope admittedly ridiculous example–you have 2 options

      1) write up a proposal for the ASF. I don’t speak for them, but I expect you would get shot down because your logic is so seriously flawed.
      2) write up a proposal for startup funding. Find some “Angel” or other investor group to fund it.

      Keep in mind: by putting the idea in the public domain, you have lost the opportunity to patent in most countries. You have 1 year from now to apply for a U.S. patent.

      Patents don’t have to be right. They have to be novel.

      It would be good to point out in your comments that you realize that your proposal is a joke. It would be good if you would point out in your comments that Simon Baron-Cohen’s (notice the placement of the hyphen) theory does not lend any support to the idea that reducing testosterone would treat autism. It would be good to distance yourself from the Geiers and the harm they have caused.

      Or, if you actually have no idea of how bad your proposal is, take it somewhere else. I doubt this is the case, though.

  21. Tom May 22, 2011 at 19:03 #

    RAJ, you really don’t understand translational research. You’re just blowing smoke.

  22. Sniffer May 22, 2011 at 22:40 #

    Dear Raj,

    Your idea seem`s as safe and as good as any others Pharma peddels.

    All drugs withdrawn were once passed safe by the CDC .

    Well worth a try it helps M.S.smoking spliffs does.

    Sincerely

    Sniffer

  23. daedalus2u May 23, 2011 at 00:11 #

    RAJ, you are a little late to get a patent on a cannabis treatment for autism.

    http://www.cannabis-med.org/data/pdf/en_2010_04_1.pdf

    It seems to work for some other things too.

    http://i-gap.info/app/dokumente/application%20of%20cannabis.pdf

    I think administering it via smoking is not acceptable. Too much potential for lung damage.

    Anecdotally I know someone with Asperger’s who got a lot better (i.e. the person learned how to became more social, and those improved social abilities persisted long after cannabis use was stopped), but I think it had a lot to do with the social environment the person was in at the time. I think getting high in a peer group would be the “best” way to use it, but I don’t think that would be feasible with current attitudes on psychoactive substances, and certainly not with children.

    Testosterone synthesis is regulated by NO. The mechanism by which cannabis lowers testosterone levels might be via raising NO levels.

  24. McD May 23, 2011 at 03:14 #

    daedalus beat me to it. There has been a fair bit of fuss over autism and pot. Here’s another one:
    http://www.doublex.com/section/health-science/why-i-give-my-9-year-old-pot

    But I don’t think testosterone was part of the story. Personally, I think it is right up there with fecal transplants. Especially when they start claiming different effects for different strains of weed. What exactly is it they are attempting to dose the kid up with? Some magic plant ingredient that might not be THC after all?

    Not something one should just up and try out on a kid. Consenting adults may be another story.

  25. sharon May 23, 2011 at 04:51 #

    @ RAJ, “hyperbolic therapy”? Is that a joke or a Freudian slip?

  26. RAJ May 23, 2011 at 15:06 #

    Sullivan wrote:
    ‘write up a proposal for the ASF. I don’t speak for them, but I expect you would get shot down because your logic is so seriously flawed’.

    Of course it was satirical post which seems to have escaped you and the inability to recognize satire might also be considered an autistic-trait. Sullivan, are you a self diagnosed Aspie?

    In fact, the proposal for Marijuana use in treating ‘autism’ and ‘autistic-traits’ is based on the best translational medicine paradigm.

    1. There has to be substantial scientific evidence that supports the translational research. In the case of Baron-Cohen’s extreme male hypothesis, high levels of tetesterone is associated with ‘autism’ and ‘autistic-like’ traits, just as published reports of high levels of blood serotonin allowed Ritvo to propose that treatment with a drug (fenflouromine)that lowered blood serotonin levels might be a cure for autism and that allowed Eric Hollander to claim that treatment with a patented liquid form of Prozac would alleviate autism symptoms such as social anxiety, depression and OCD are all based on scientific evidence that allowed these alliances between behavioral geneticists and pharmaceutical manufacturers to go forward.

    2. If autism and autistic-like symptoms are associated with high levels of tetesterone, a treatment that has been shown to lower levels of tetesterone im adult males by 1/3 could be a palliative intervention. Again, it is consistent with best practice translational medicine.

    3. If you read the ‘best practice’ translational research in autism they all say the same thing. The promoters of these translationl medicine research include researchers looking at Fragile X, Rhett Syndrome and Phelan-McDermid Syndrome. They all state that ‘autism’ is caused by a disruption of early brain development associated with aberrant neuronal connections and if a drug therapy can be introduced that can reverse the synaptic aberrations you might have a ‘cure’ for all cases of autism. Autism, schizophrenia, ADHD, Alzheimers, Parkinson Disease even right hemisphere adult stroke patients all suffer from various forms of aberrent connectivy. I am waiting for the translational researchers to make the claim that these drug interventions might not only cure ‘autism, but might represent a magic bulet that might cure all forms of aberrant brain connectivity. What these translational medicine rsearchers never explain is how does any drug therapy go back in time, even to the fist days of fetal life, and reverse the aberrant neurnal connections in a brain that is already mis-wired.

    My own personal therapy for my own’autistic-like’ traits is a six pack of strong German beer. I have has remarkeable results with this therapy.

    • Sullivan May 23, 2011 at 18:04 #

      Of course it was satirical post which seems to have escaped you and the inability to recognize satire might also be considered an autistic-trait. Sullivan, are you a self diagnosed Aspie?

      Is that supposed to be some sort of dig? If so, it is highly inappropriate.

      Let’s spell this out, OK? Your “humor” was (a) not very funny and (b) not obvious to all. I was clarifying things for the readers who might not realize that your comments were using a ridiculous proposition to make a point. The problem is, there are people who have used the very same ridiculous logic. They took themselves so seriously that they are now facing charges. I’m not going to risk the chance that someone reading these comments comes away with the idea that your overly dry, almost humor is a statement of real opinion.

      One is tempted to request that you refrain from your therapy until after making comments on this blog.

  27. Tom May 23, 2011 at 19:13 #

    “What these translational medicine rsearchers never explain is how does any drug therapy go back in time, even to the first days of fetal life, and reverse the aberrant neurnal connections in a brain that is already mis-wired.”

    Actually RAJ, Sur and his colleagues have explained this very issue through their elegant experiments with Rett models. Some but not all disorders result from developmental abnormalities that cannot be addressed through drug therapies. They aren’t all just “mis-wired”. Gotta do the bench science to figure it out. That’s why they call it translational.

    “mis-wired” is slimpistic and

  28. RAJ May 24, 2011 at 00:25 #

    By the Way Sullivan since you attended the IMFAR Conference I suppose you also attended the oral presentation given by the California Autism Twin Study Group.

    This study was highlighted by the Autism Speaks blog and if you want to understand the importance of this twi research you might want to visit Autism Speaks and tak ea gander on the reposnses to this study including my own at :

    http://blog.autismspeaks.org/2011/05/19/epidemiology-sheds-new-light-on-risk-factors-for-asd/

    • Sullivan May 24, 2011 at 01:03 #

      RAJ,

      glad you are getting a kick out of the California Twin Study. Keep a few things in mind. First, I don’t focus on genetics to anywhere near the level you do. Second, I was standing in front of a poster when that talk went on.

      If you want to understand the importance of twin research, perhaps you should keep up on the literature. I seem to recall the last time you graced our blog, you were completely unaware of the two studies which had recently come out (and had been discussed here).

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