Autistic Voices Not Saying What We Want

21 Feb

Yesterday I linked to a story about Carly Fleischmann, a 13 year old autistic girl who, up until recently has been uncommunicative.

All of a sudden these words started to pour out of her, and it was an exciting moment because we didn’t realize she had all these words,” said speech pathologist Barbara Nash. “It was one of those moments in my career that I’ll never forget.”

I’ve caught some email flak from a few people in the neurodiversity community for linking to this story. Mainly because of the closing words from Fleischmann:

If I could tell people one thing about autism it would be that I don’t want to be this way….”

I can understand how people would be upset with Fleischmann’s opinion. Many autistic people have spent a long time trying to raise awareness of their lives as something that they are happy to have and happy to be autistic in. I consider it vital that autistic people know that too.

But.

These _are_ Fleischmann’s thoughts and opinions. We should not and cannot discount, ignore or attack them. We cannot pretend that they are not equally as valid as any other autistic persons just because we don’t like their message. To say that they are not valid is to take the exact same stance as those who claim autistic people cannot know their own minds. Fleischmann knows her own mind and – right now – she doesn’t like being autistic and wishes she wasn’t.

Maybe with age will come a new self-acceptance. Most teens are full of self doubt and lack positive self imagery and I doubt Fleischmann is much different than most teens. But we also have to consider that she _won’t_ change her mind and that she will join with other autistic self advocates who may wish for a cure. We have to ask ourselves difficult questions about the nature of our advocacy now. I will be quite open and say that if my daughter ever wishes for a cure then I will try and help her get it. I will disagree with her decision and feel sad that she has made that choice – *but it is her choice* . Just as it is Fleischmann’s choice to not be happy with the fact she is autistic.

This is also why I am ambivalent about a cure. Whilst I do not think that a cure is a necessary thing for autistic people, I do believe that an individual has the right to do with their own bodies pretty much whatever they want. We have a society where men can become women and vice versa and no one aside from prigs and bigots object to this. This strikes me as the same. the issue with cure for me is that it must be very, very responsibly initiated. The issue of whether there will ever _be_ a cure is out of all of our hands. If a scientist wants to research a cure then they will.

We should – in my opinion – try and teach that there is nothing wrong with being autistic. Not that one cannot have a choice to not be autistic.

62 Responses to “Autistic Voices Not Saying What We Want”

  1. Beau February 21, 2008 at 22:09 #

    Well said, Kev.

  2. Patrick February 21, 2008 at 22:26 #

    I may not want to be this way either, but you know, here I am so society can deal with it, or not. If there were a ‘fix’, I could not say that I would be willing to subject myself to it. I’m not sure what good being able to appear more normal would really do for me. I am sure that what I can do with computer logic well outshines many other people in the same field. (And yes of course there are others that make my abilities look like triviality.)

    Whoever complained, remember that those quotes are just the opportunistic ‘sound byte’ subjected to the writer and editorial sensational twisting. Give the kid a break, maybe the next part of her … was indeed ‘but this is what I am’, or maybe it wasn’t.

  3. Kassiane February 21, 2008 at 22:43 #

    It is her choice, yes.

    The concern I have is that Carly has had lots and lots of ABA. What ABA teaches is that autism is a lump of behaviors (which Carly references extensively) that need to be extinguished so as to be an acceptable individual. Normal teenage angst doesn’t hold a candle to that. It’s hard to know what Carly would think if she was accepted rather than taught that her “behaviors” (and that word is so gross) were the cause of her pain.

    And of course there is the “drop like a hot potato” syndrome the media has. It isn’t fair to Carly…she isn’t the first. She won’t be the last. And it is unethical for them to break a young girl for a story…even if they DID finally find one who says what they want to hear, the media with their short attention spans still have no right to do the flavor of the week thing with such a young kid who has expressed low self esteem.

    That’s just being a vulture. No matter what she believes, no matter what her neurological configuration. It’s wrong. I wish Carly all the best, even if she and I do disagree, and I hope that has been clear.

  4. Brett February 21, 2008 at 23:12 #

    Kev,

    Well said. Thanks.

  5. Amanda February 21, 2008 at 23:13 #

    I’ve gotten really uncomfortable with ‘cure’ being the single way that the autistic community is split. There are a lot of people who do want a cure, and I’ll disagree with their reasons or whatever, but it doesn’t mean they don’t have important ideas to contribute or anything. Sue Rubin has worked really hard against aversives being something autistic people are subject to, and she wants a cure. She also has said she doesn’t want to be short, so it’s not just autism. But to discount her work against aversives just because she wants a cure seems counterproductive. And there are plenty of people who don’t want a cure, but whose opinions about other autistic people and what should be done to us are totally horrid and destructive. So I don’t understand quite why cure/no-cure has become the polarizing issue as to whether one’s a “real” autistic self-advocate or not.

    Certainly asserting the right to not want to be cured has been really important because if you want a cure everyone will understand it, but if you don’t you’re met with resistance, belittling, or worse, by the people with power in the medical community. But it’s not the only issue in existence. Any more than aversives are the only human rights issue in existence for autistic people. It seems weird to declare exactly one human rights issue The One that everyone has to agree on, and then ignore all the other ones people can have opinions on.

  6. Ms. Clark February 21, 2008 at 23:41 #

    About Carly, I would just say that she may never have been exposed to the idea that she actually might be less happy as a “cured” person. Just like some little black girls here used to like to wear white stockings on their legs so they could imagine being white girls… and how they preferred to have a white baby doll. Is that because being black is intrinsically inferior and these little girls had tapped in to that? No.

    She’s been treated with ABA since she was 4 and the general message of ABA is that there is only one acceptable way to be, and that is NOT autistic.

    Which is not to say that I know why Carly thinks the way she does, but I think we need to consider that she may have had ONLY negative messages about being autistic. We know that she says that children don’t like her because she’s autistic.

    So if children didn’t like little black kids because they were black is it the fault of the little black kids for being off-putting and not trying hard enough to be white, or what?

    No one knows what it would feel like to be someone else. No one knows that they would in fact be happier if they had another neurology. Carly can not know that she would be happier if she could be cured. Just as I can’t know that I wouldn’t enjoy having Carly’s view of the world.

  7. Ms. Clark February 21, 2008 at 23:44 #

    Maybe it’s a small point about semantics, but I’d say this is not the best way to describe her: “a 13 year old autistic girl who, up until recently has been uncommunicative.”

    When asked why she used to have meltdowns or get upset, she said because people didn’t understand what she wanted. I would say that she had been trying very hard to tell them, but that the people around her didn’t understand what she was trying to communicate.

  8. Michelle Dawson February 21, 2008 at 23:48 #

    Autistics who undergo early intensive ABA-based interventions for many years haven’t had much of a voice, but those who have, have tended to express (in various ways) extremely negative views of autism.

    I gave one example of this herehere (also here)based on the extensive testimony of a 9yr-old boy, who had been in ABA since he was 3, in the Wynberg case (in which Carly’s parents were also involved):

    “Testimony in recent legal proceedings (Wynberg v Ontario) demonstrates that children in government-funded ABA programs learn that there is nothing good about autism, that they must get rid of all their autism, that all the autism in everyone has to be gotten rid of, if not the country will be ruined.”

    This is consistent with with the extremely negative views of homosexuals and homosexuality expressed as a young adult by an individual who had “successfully” undergone early intensive ABA-based interventions at UCLA (with Ivar Lovaas in charge) in an effort to make his behaviour less “deviant” (Green, 1987).

    Until recently, I was sure that it was horrible to be autistic, and I sure didn’t want to be autistic. I’d been told by respected autism advocate authorities that I was inferior and that I could not do all the things that make life worth living because I was autistic. I was told that autistics like me are a burden on nonautistic people, and that it would be better (for families and society) if there were no autistic people at all. And so on. And I was told that without ABA, autistics are doomed. This is the kind of information that continues to surround all autistic children and adults in Canada.

    So I tried very hard (for years) to find an ABA program for adults, and was furious when there weren’t any. I became utterly miserable and was in extreme difficulty. This made me very popular with autism advocacy groups like autism societies–because I was such a conspicuous failure.

    This was portrayed in a TV documentary aired across Canada (Radio-Canada) and around the world (TV5) in 2001. I was asked by autism advocates to be in this documentary because of what a failure I was. My failure suited their agenda, in which all ABA-deprived autistics are write-offs and doomed. Also I had exactly the behaviours that autism advocates use to scare people about autism, and I could be counted on to say bad things about being autistic.

    And I did. E.g., I stated that it was impossible to be like this (meaning, autistic), and that I would rather be anyone else but me. These statements were totally accurate representations of my views at the time, about seven years ago now (I was about 40 years old).

    The only reason I started examining the views I’d been fed by autism advocates and had uncritically adopted was that grossly pejorative views of autism put me in danger. This danger persisted for a long time. I didn’t have a lot of choice.

    What should be considered truly amazing is that there are still autistic children and adults in Canada who do not see autism as something horrible. I don’t know if there are many of us, but it is amazing that there are any of us at all. Grossly false and pejorative views of autism aren’t only messages we’re surrounded by every day: they are also enacted in public policy and the law.

  9. Kev February 21, 2008 at 23:50 #

    You’re right Ms Clark, I did phrase that very badly.

  10. kristina February 22, 2008 at 00:48 #

    I haven’t posted on Carly yet because — while excited to read her writings — I’ve had to sigh at the way the media is spinning the story as the latest great breakthrough. It’s tremendously exciting to read what she writes, but I have started to sigh at the way so much focus is given to an autistic person being able to communicate “just like ‘us’ “—using language. I guess I may eat my words if Charlie ever starts producing, via typing or writing, a lot of his thoughts. I don’t feel he, or we, live in a world of silence: Charlie communicates plenty, in so many non-verbal ways. Our days are full of communication, if not always of the verbal kind.

  11. Leila February 22, 2008 at 00:53 #

    I don’t think Carly’s main point in the interview was to say she wants a cure. She wanted to say that because of autism she sometimes she can’t control/help her actions, and she wishes that people would be more understandable about her condition. It is a very good message about tolerance to neurodiversity.

  12. arthur February 22, 2008 at 02:40 #

    hey. this is arthur. carly’s dad. just to be clear – carly is 13. all 13 year olds want to “fit in” and be loved. her twin who is neurotypical feels the same way! carly sees herself as a normal kid trapped in a body that won’t behave the way she wants it to. nothing more complicated than that. she merely wants some respect and kindness and i support her wishes fully. thank you for your interest and support!

  13. MJ February 22, 2008 at 03:02 #

    Kev –

    You finally say something that I can agree with – that the issue is really about the person with autism and what they want, not about what the parent wants. Thanks for that.

    Arthur – hopefully you don’t mind me asking, but is Carly an identical or fraternal twin? I am only asking because I am the parent of twin girls with autism and I am curious if that aspect of it makes a difference.

    Ms Clark, regarding your comment :

    “Just like some little black girls here used to like to wear white stockings on their legs so they could imagine being white girls”

    You have to be joking. You cannot seriously be comparing wishing to be a different race to having a condition like autism. If you think that is anything like what autism is like for young children I would strongly recommend that you spend a week living with a family that has a young child (or better yet, two children) with autism. I think you will quickly come to understand how wrong that impression is.

  14. Harold L Doherty February 22, 2008 at 03:26 #

    Kev

    I have to give you credit for acknowledging, somewhat at least, that Carly has the right to NOT want to be autistic.

    It is too bad that Ms Dawson can not understand that not all persons with autism subscribe to her personal views about autism and ABA. It is unrealistic by any measure to expect that all persons with autism will subscribe to the Sinclair-Dawson autism as a blessing ideology.

    My son was diagnosed with an autism disorder at age 2 and has profound developmental delays. He has developed tremendously with ABA, although not to the degree of Carly. He is also a happy child who brings joy to everyone who comes into his life. He has not been oppressed by ABA in the least. His life has been enhanced by it. Just as the hundreds of reported studies on ABA have documented in so many other instances.

  15. livsparents February 22, 2008 at 05:08 #

    I dunno, some of this reminds me of drug addicts saved by ‘Jesus’. You can disparage the ‘Jesus’ part of the recovery, but can you really go after the recovery itself? ABA seemed to have done something good for her, can we discount it because the minor ‘brainwashing’ received by it?

    Do the ghosts of ABA justify (through Loovaas and aversives) a bias? Does this girl’s accomplishments need to be shadowed by the means by which she got there?

  16. Mum Is Thinking February 22, 2008 at 05:11 #

    Sorry, I’m in a rush, no time to read all the feedback, so maybe someone else has mentioned this point already.

    Just want to say my first impression was that “I don’t want to be this way” meant “I don’t MEAN to be this way” as in, this is just the way I am, I’m not trying to make trouble or be difficult.

    Of course, I could be wrong, but as I remember the context of that quote in the article, it gave me that impression.

    Or maybe she does wish she wasn’t this way. I wouldn’t be upset with her for feeling that way, either. It’s hard being different when you’re a kid, I wouldn’t hold it against her. I’d just feel really sad for her, and hope it gets better. Maybe being able to communicate more efficiently will help. I hope so.

    She’s a sweet girl, I can see that in the film clip that accompanied the article 🙂

  17. Matt February 22, 2008 at 05:29 #

    Arthur,

    thanks for your comments. Your daughter looks and ‘sounds’ like a wonderful person. I think she has earned a lot of respect from people on all sides of this discussion.

  18. Ms. Clark February 22, 2008 at 05:37 #

    MJ criticized:
    ““Just like some little black girls here used to like to wear white stockings on their legs so they could imagine being white girls”

    You have to be joking. You cannot seriously be comparing wishing to be a different race to having a condition like autism. If you think that is anything like what autism is like for young children I would strongly recommend that you spend a week living with a family that has a young child (or better yet, two children) with autism. I think you will quickly come to understand how wrong that impression is.”

    MJ,

    Arthur has had a disabled autistic daughter for 13 years.

    I have had a disabled (I dare say just as disabled as Carly is, but somewhat differently) autistic kids for more than twice that long…. and YOU are going to suggest that I live with an autistic kid?

    Thanks. I don’t know how old you are MJ, but I think it’s possible that I’ve had a disabled kid longer than you have been alive, or almost that long.

    And guess what MJ, autistic people **just** as disabled as Carly have moved from wishing they were not autistic (which Carly may not be indicating according to her father) to being thrilled that they are autistic, and the difference comes from learning that it’s actually OK to have black skin…. No wait, mixing the examples, they learned that actually it’s OK to be autistic.

    And **don’t be lecturing me deary**. You have no idea who I am and how disabled or not that I am, or how disabled my kid is.

  19. Ms. Clark February 22, 2008 at 05:46 #

    I second what Matt said. A message for Carly, if her dad wants to pass it on: You look like a fantastic young woman to me. I think you must have some really great ideas to share. I am glad that you can communicate now by typing. And I’m glad so many people are listening to you. 🙂

  20. Michelle Dawson February 22, 2008 at 06:48 #

    According to Mr Doherty, I “can not understand” autistics holding views that I held and publicly expressed not so long ago.

    Autistics hold as wide a variety of views as nonautistics, and no one should be surprised at this. The more autistics who publicly express our knowledge and views, the better, though I hope that other autistics who make the effort to communicate are not grossly misrepresented and defamed (as a fraud and criminal, etc.) by autism advocacy leaders the way I’ve been, and continue to be.

    My formal and informal criticisms of ABA-based autism interventions are publicly available, so anyone can verify whether they’re justified and accurate, and any factual criticism is welcome. In my view, accurate information is always good for autistics.

    My criticisms of ABA are based on recognized standards of science and ethics. These are the standards that automatically protect and benefit nonautistics like Mr Doherty, and that I believe (that’s my personal view, which Mr Doherty objects to) autistics deserve.

    Unfortunately, in Canada, ABA services have been demanded by writing off most or all autistics who haven’t received unlimited ABA-based interventions starting early in life. You can see examples of this in the Auton and Wynberg trial decisions, which are universally promoted and applauded by Canadian autism advocates, including Mr Doherty.

    Most autistics in Canada are too old to have been in ABA programs starting as young children, so most of us have been written off through the efforts (like Auton and Wynberg) of autism advocates. We’ve been written off as doomed, as less than human, as belonging in institutions, as having lives not worth living, as being unable to communicate or learn, as a drain on our families and on society, etc.

    If some ABA-deprived autistics–it’s too late for us, particularly according to the Auton trial decision, where the window of opportunity slams shut at a very early age–object to being written off, no one should be surprised by that either. In my view, it’s a good and necessary thing when disabled people object to being written off, particularly when the writing-off is at the level of public policy and Canada’s highest law.

  21. Harold L Doherty February 22, 2008 at 08:58 #

    Ms Dawson

    It is true that I am not a person with autism. My son, however, has Autism Disorder with profound developmental delays. I speak on his behalf because he can not. And you do not speak for him.

    Nor, obviously, do you speak for Carly, whose feelings about herself and her own Autism Disorder, you attempt to discredit, because they differ from yours, and because she has benefited from ABA.

    Your comments about ABA and its effect on the self views of persons with autism are unsupported by any study of any kind. They are simply your unsubstantiated biases.

    My son has been helped by ABA. And he has, judging by his happy personality, amply documented in photos and videos on my blog site, benefited greatly from ABA without it causing him to have a negative view of himself.

  22. Ms. Clark February 22, 2008 at 09:29 #

    Mr. Daugherty,

    Say you were a 13 year old girl, exactly like Carly. Take a minute and imagine that.

    She says that she tries with all her effort not to do certain things that make other people react negatively to her (avoid her or maybe they are even mean to her when she slams her hand on a table when she’s around other kids). So if you were that girl. Would you want more ABA to attempt to train you into not doing these things? How much and for how long? Should she be getting round the clock ABA training to see if they can get her to develop that control that she says in all sincerity that she would like to have?

    Or would it make more sense to train the typical children and adults around her not to react negatively to her non-typical actions/behaviors? And in doing so, take some of the pressure off of Carly to not slam her hand on the desk so that she can actually think about something other than “don’t slam your hand on the desk, don’t slam your hand on the desk, don’t slam your hand on the desk” “Act normal, act normal, act normal, act normal…”

    See the brain can only focus full attention on one thing at a time.

    The ABA pushers would say that they can tell what a girl like Carly can and can’t do. A girl like Carly’s own testimony about what she can’t do would be immaterial. There are many like Carly who in spite of all that ABA therapy (Dov Shestak) it appears that no one noticed they could read and spell (and in Dov’s case he could read English **and** Hebrew and no one had noticed that). Maybe had they taken a break from teaching these to act normal and given them a keyboard or letter board earlier these trainers might have learned about how hard they were trying to be perfectly normal all along with so little apparent success in that direction. And they might rethink that ABA can be a colossal waste of valuable years of childhood that could be better spent learning about ad discussing science, geography, math and history.

    If the child is in fact mentally retarded and not just autistic then a million hours of ABA isn’t going to make the child not mentally retarded.

  23. Michelle Dawson February 22, 2008 at 10:19 #

    Hi Mr Doherty,

    I’ve never claimed to represent other autistic people, unless individual autistic people have explicitly given me that privilege.

    If you would stop misrepresenting my easily available work and writing, as you so frequently do, then we could maybe have a productive discussion. As it is, all we have is more evidence of the standards you apply to autistics.

    I’ve publicly written elsewhere that Carly is totally cool and that she has great ideas. Like all autistic children, she should always be listened to.

    You are free to denigrate (as “unsubstantiated biases”) the courageous sworn testimony of an autistic boy in the Wynberg hearings. His testimony and letter to the government were widely disseminated (including in a FEAT newsletter) by his mother. But I think this boy too is totally cool and that he should always be listened to, as should all autistic children.

    I haven’t made any statements about the “self-views” of autistics in ABA programs. I’m not actually sure what that means, sorry. I did write that there is evidence that early intensive ABA-based interventions result in autistics having negative views of autism. Apart from legal evidence, there is some evidence in the science and at the popular level.

    Also, I’m a bit puzzled by your objections. Last I looked, you were renowned and celebrated for your negative views of autism, which you’ve forcefully expressed as “reality,” along with your contempt for any suggestion that autism is not a very and entirely bad thing. From your viewpoint, isn’t it a good thing that autistics learn, as we do learn, the “autism reality” that in our society, autism (like cancer, a comparison used in Auton and by numerous autism advocates) is a very and entirely bad thing, and that we would all be so much better off without it?

  24. mayfly February 22, 2008 at 11:06 #

    I find it a bit strange you would be disappointed if your daughter chose to not remain autistic. What is it that makes you feel that way. What would the loss be for both you and her? I do think it admirable that you would allow her to make the decision.

    My daughter’s autism does not bother her. She does not seek friends nor social acceptance. This is not due to her cognitive disabilities, it is one of her autistic traits. I definitely lean toward the cure.

    I think you needed to quote Fleischmann’s entire statement.

    “If I could tell people one thing about autism it would be that I don’t want to be this way. But I am, so don’t be mad. Be understanding.”

    She wants to change, and she want’s people to accept her as she is. This is in no way a bad thing, she’s not unwilling to try to live according to the rules of societal intercourse, and she is asking society to accept her when she breaks those rules.
    I think this much more refreshing than those who believe any such compromise demeaning.

    “Then Carly began opening up, describing what it was like to have autism and why she makes odd noises or why she hits herself.”It feels like my legs are on first [sic] and a million ants are crawling up my arms,” Carly said through the computer.”
    I would not relish feeling that way. If, it cause her such torment, why would people be aghast about her wanting to not be autistic.

  25. Casdok February 22, 2008 at 12:35 #

    An interesting post and interesting comments.

  26. Harold L Doherty February 22, 2008 at 15:02 #

    Ms Dawson

    I have not misrepresented your biases in any way.

    You have campaigned in Canada against public funding for ABA interventions for autistic children in the courts, in political and government forums and in the media. In doing so you have not only fought against the wishes of the hundreds of thousands of parents fighting to help their children with ABA you have also, very arrogantly in my submission, dismissed the studies and reviews by numerous credible reviewing agencies which speak to the benefits of ABA for autistic children, children like my son and like Carly.

    You have fought against ABA which, according to the US Surgeon General’s offices and state agencies in Maine, New York and California, and most recently the American Academy of Pediatrics, have found that:

    “The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive
    behavioral intervention programs in university and community settings.29–40 Children who receive early intensive
    behavioral treatment have been shown to make
    substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control
    groups.31–40”

    I have read many of your pronouncements about what it is like to be autistic. In many of them you do NOT make it clear that you are speaking solely for yourself and not for the Carly’s or the Conor Doherty’s. You have garnered much attention by being autistic. Good for you.

    But I feel sorry for the autistic children and their parents who have bought into your rhetoric. Your attempt to suggest that Carly’s expressed statements that she would rather not be autistic is attributable to ABA is pure nonsense unsubstantiated by anything except your own personal feelings.

    If there are people reading this discussion who agree with your views about ABA I urge them again to look at my son’s pictures on my blog site. He has actual direct experience with ABA. Although he can not communicate on Carly’s level he can communicate with his frequent smiles and his obvious joy in reading, math and other ABA acquired skills. He has serious deficits and great strengths. He is a great joy in my life. And Conor, who has actual experience with ABA, asks for his ABA therapist when she is not in our home. He looks forward in anticipation to her visits. He pulls a chair to a window looking for her, an hour before her scheduled arrival.

    Autistic self injury is not beautiful. A life of dependency is not beautiful. And those are realities for many autistic people who are not researchers at Montreal hospitals. ABA helps enhance the lives of autistic children like my son. That is what you have fought against in Canada and, via the internet, around the world.

  27. Kev February 22, 2008 at 15:19 #

    _”I find it a bit strange you would be disappointed if your daughter chose to not remain autistic. What is it that makes you feel that way. What would the loss be for both you and her?”_

    I’m not saying I’d be disappointed in her decision. I’d be sad. Mainly because it would mean that I had not fulfilled my most important role of making my kids feel comfortable in the skin that they inhabit. That would be my issue to work through, not hers.

    _”I think you needed to quote Fleischmann’s entire statement.”_

    I take your point but I’m responding to the emails I got which took issue with that particular quote and my linking to the article that contained it.

  28. Michelle Dawson February 22, 2008 at 16:13 #

    Hi Mr Doherty,

    The only thing I’ve written about Carly in all my messages here is this:

    “I’ve publicly written elsewhere that Carly is totally cool and that she has great ideas. Like all autistic children, she should always be listened to.”

    Because other people posting here raised questions about what children might learn in early intensive ABA programs, I provided verifiable information about this issue, without mentioning Carly at all. This verifiable information included the testimony of an autistic child.

    Apparently, according to you, it’s wrong for me to do any of this–to be enthusiastic about Carly or to provide accurate information in response to comments from other people.

    So far as I can tell, you’re saying that no one–not a single person–should have intervened in Auton at any point to object to most autistics in Canada being written off by both sides.

    I understand your son is fine. But as anyone can see if they read my position (which has been out in public all along), my primary concern in Auton was for autistics who have not received intensive ABA-based interventions starting early in life. That is most autistics in Canada.

    Most or all of these autistics were written off in Auton, by both sides, as I wrote above. We are too old to have been in ABA programs starting as young children.

    The positions of both parties in Auton had a lot of other problems, in the area of low or no standards of science and ethics. I’ve written publicly about this, and I suggest that if you find any factual errors, you let me know.

    Also, if you find any factual inaccuracies in any of my writing about ABA-based interventions, please let me know. I really appreciate anyone who can improve my work by pointing out factual errors I’ve made (I’ve pointed out errors I’ve made myself, as anyone familiar with my work knows).

    Your position that I’ve “fought against ABA” because I’ve treated ABA like a science is as ridiculous as saying that I’ve “fought against cognitive science” and that I’ve “fought against cognitive neuroscience” because I’ve been a much harsher and more effective critic of these fields of science in autism than I have been of ABA in autism.

    It’s also as ridiculous as saying that Donald M Baer “fought against ABA” because he harshly criticized an apparently successful ABA project (at UCLA, run by Ivar Lovaas) that many parents were absolutely certain their children were doomed without.

    I’ve taken the position that autistics deserve recognized standards of science and ethics. I’ve also taken the position that services for autistics, whatever those services may be, should be asked for accurately (including with respect to the existing science), ethically, and respecfully. These are the positions you’ve branded as arrogant and reprehensible.

    And consider me totally impressed (if not in actual awe) that you’re claiming that I don’t know anything about self-injury.

  29. Brett February 22, 2008 at 18:18 #

    Kev,

    You sure know how to get a discussion going: just say something in defense of “the other side.” Sadly, the discussion here shows how many people simply respond with their own pre-conceived, well thought out ideas without taking the time to actually reflect on what it is you have to say. Your main point, that autistic people are just that – people – seems to have gotten lost.

    It is an individual choice to want to be one way or another. Yes, of course, all of the education and brainwashing or whatever you get as a child will inevitably influence your decisions as an adult. That’s true of ALL people, whether it is an autistic who experienced ABA, someone who was abused as a child for no apparent reason, or a young adult trying to overcome a lifetime of overly religious (or non-religious) parents.

    Autistics are just the same as the rest of us, only differently so.

  30. alyric February 22, 2008 at 21:05 #

    Harold wrote: – one untrue thing after another:

    “It is true that I am not a person with autism. My son, however, has Autism Disorder with profound developmental delays. I speak on his behalf because he can not. And you do not speak for him.”

    No, she hasn’t made any such claim.

    “Nor, obviously, do you speak for Carly, whose feelings about herself and her own Autism Disorder, you attempt to discredit, because they differ from yours, and because she has benefited from ABA.”

    No, she hasn’t attempted to discredit Carly. I have no idea how you came to such a ludicrous conclusion.

    “Your comments about ABA and its effect on the self views of persons with autism are unsupported by any study of any kind. They are simply your unsubstantiated biases.”

    Wrong again – she has quoted chapter and verse about the publicly available evidence for that. You might profit by reading it.

    “My son has been helped by ABA. And he has, judging by his happy personality, amply documented in photos and videos on my blog site, benefited greatly from ABA without it causing him to have a negative view of himself.”

    This might or might not be true. Judging by the number of untrue statements you have made in less than 200 words, I wouldn’t place too much credence in the veracity of any statement you make.

    I don’t know why Kev lets you comment here when you employ blanket censorship on your own blog. Possibly because he loathes any infringement on free speech even if it’s completely untrue speech. That being the case Harold, perhaps you’d like to answer the question of the month. If ABA is so good at figuring out people and teaching people how to do things how come they missed completely with Carly? Remember, she also said that they didn’t teach her how to spell. What – ABA therapists couldn’t even teach a bright kid like Carly how to spell? Whatever are they doing? And as Ms Clark has so aptly pointed out – there’s also Dov Shestack – same deal. He had ABA for years and after they stopped he learns to communicate. There’s something very strange going on here.

  31. mayfly February 22, 2008 at 23:53 #

    Your posts due nothing to refute the effectiveness of the treatment, but argue that it is indoctrination into a world of autistic hatred. My daughter’s ABA treatments were not successful. ABA is not a panacea. It is generally recognized as the most successful intervention. There is paper after paper presented in per reviewed journals, primary the Journal of Autsism and Development Disorders that so attest.

    Your reference that you want certain autistics kept apprised on research, seems to me like you are calling for the politicization of science. These do not seem to be involved in peer review, but in insuring no research is done which suggests autism is not beneficial

    Finally Canadian Human Right’s Commissions are so full of themselves, they would be laughable, that is if the power they hold was not terrifying. Here’s some videos of one in action

    http://pajamasmedia.com/2008/01/the_suicide_of_reason_in_canad.php

    Do you plan on bringing ABA supporters before such commissions?

    Never did I hear any of my daughter’s ABA therapists denigrate her because of her autism or any other reasons.

    I will say they were almost completely inflexible. At one time we were at a review and they wanted to teach my daugher to say :kuh”. Her reward for that was to be a ball. At the time my daughter still had one or two words. She kept saying “ball, ball, ball” but they kept demanding she say :”kuh, kuh, kuh”. Until I said “Give her the ball!

    There are some very bad therapists out there, and some very good ones. The first one we had taught my daughter more in a month that others could teach her in years.

    It may be that my daughter’s cognitive disabilities were such that ABA was a reason the intervention was only somewhat successful. It also possible that more of her synapses may have been authenticated by an earlier intervention, and this she would not be so disabled.

    ABA needs to be presented as the best intervention out there. I don’t think anyone is claiming the 50% success of Lovaas. I other words, it is more likely not to work.

    People should be aware that successes such as the Maurice children are atypical. No one writes a book saying ABA did not help my children at all.

    But even with all its faults it is the best program out there. It would be inhumane to not attempt it with a recently diagnosed child.

  32. Autismville February 23, 2008 at 00:53 #

    Great post. So great to hear from Carly … and from her dad.

  33. Regan February 23, 2008 at 02:44 #

    If the point is that it is great that Carly has an effective means to communicate with the world and that she has her own opinion and thoughts about her life and her self…
    Yes. Agreed. Great post.

  34. Schwartz February 23, 2008 at 03:11 #

    Kev,

    Wonderful post.

    I went and read the whole quote. Overall, I did not get the impression it was from someone who hated themselves, but someone who accepted their frustating situation. I thought it was quite positive overall.

  35. Ms. Clark February 23, 2008 at 06:59 #

    Brett offered: “It is an individual choice to want to be one way or another.”

    And what if the person is immersed in a society that almost universally holds that being a certain way is wrong and then holds out the “choice” that one can change?

    I also want to point out that there’s a big difference between wishing to change one’s external body and wanting to change the very way ones mind IS constructed.

    All this talk about a cure seems to throw away the reality of what we know is the cause of autism. It is how the brain is wired, and the brain appears to be wired drastically differently in autism. Not always so drastic that it can be easily seen on an MRI, but at the level of the minicolumns, the size and number of the minicolumns in the cortex and the way more distant parts of the brain are cabled together. This wiring happens before birth. If you were the most skillful neurosurgeon on the planet, it would not be possible to go in and rewire all of this without killing the person or leaving the person in a coma, or perhaps in some kind of barely conscious state.

    Why is it that everyone assumes that a cure, ripping the autism out of the person, would leave them in an improved condition?

    I’m not criticizing Kev for his hypothetical support of his daughter if she wanted a cure, because he is assuming that what she would be would be OK. But I can’t see it that way, that’s a total sci-fi fantasy as far as what we know now. I would be horrified if my kid wanted a “cure” when in fact the odds would be that the kid would not only be unrecognizable to me and to his/her own self, but that the person might not even be something recognizable to us today since this has never been done before.

  36. Kev February 23, 2008 at 11:59 #

    _”I would be horrified if my kid wanted a “cure” when in fact the odds would be that the kid would not only be unrecognizable to me and to his/her own self, but that the person might not even be something recognizable to us today since this has never been done before.”_

    I totally agree. I couldn’t be happy with the decision she’d (hypothetically) made and I would mourn the loss of the daughter I knew.

    I also agree that whilst Brett is correct that it is an individual choice, the pressures exerted by society to conform are huge. I saw a program recently about a 15 year old girl who wanted a boob job. Why? Did she really want a boob job or was she just unhappy about the way she was perceived?

    There are no easy answers to this. I see this area as the greatest test of advocacy. It is difficult to think and talk about.

  37. Kev February 23, 2008 at 12:01 #

    _”Overall, I did not get the impression it was from someone who hated themselves, but someone who accepted their frustating situation. I thought it was quite positive overall.”_

    Agreed, but – as I said above – I wrote this post in response to some email criticism I received when I posted the link to it. The criticism was about me linking to a piece in which an autistic person used the line I highlighted above.

  38. mayfly February 23, 2008 at 14:05 #

    Nearly everyone knows that cures are currently impossible. We are however gaining more knowledge on just how neuronal connections are made. There is a good article on the structure of neuroligin and the neurolig0n-neurexin complex in the Dec 20 2007 issue of Neuron.

    One theory of autism and mental retardation is that there are less than the usual number of synapses active in the brain. Indeed some of the recent genetic work four autism markers has concerned genes which code for neurexin.

    When I look at protein structures, I am amazed that difficulties are not more prevalent. The problem can be with the folding or with the reaction site. In understanding how neurexin and neuroligin work, we may be able to better design drugs to make synaptic communication better and in so doing ease the severity of the autism or the mental retardation.

    One problem is that the body needs to verify synapses. How it does so is nit completely understood. As I understand not all connections are supposed to be usable for a lifetime. It may be that the verification process has gone awry and that perfectly good synaptic connections were turned off permanently.

    All this makes a cure far-fetched, but as our knowledge grows the number and types of palliative measures will also increase. What people want is more measures to mitigate autism’s terrible effects and allow our children to experience life more fully.

    There was a paper last year published on mice with Rhett’s and the protein 21 activated kinase. The researches found that by blocking the enzyme the synaptic anomalies in the brain were repaired. I cannot remember to what extent. We may in the future be able to intervene at the right stage of embryonic development and stop the damage done by “autism” and ensure normal brain development.

    I have a beautiful daughter who is afflicted with a terrible condition. I would not give her up for anything. I would not trade her for an NT child. If her problems went away tomorrow, she would still be a beautiful child, and her future prospects would be so much brighter.

    Yes talk of cures for children like my daughter is engaging in fantasies. But for some. even if the fantastic were possible, you would find doing so morally abhorrent. Yet none of you can explain what benefit my daughter derives from her autism, and my wishing for a better future for her is a bad thing.

  39. Kev February 23, 2008 at 14:22 #

    _”even if the fantastic were possible, you would find doing so morally abhorrent. Yet none of you can explain what benefit my daughter derives from her autism, and my wishing for a better future for her is a bad thing.”_

    This is the crux of it. _Perceived_ benefits.

    To me, mayfly, an actual benefit is that a person is free to be who they are and construct their own identity. Have a read of this which is co-written by Jackie Downer, a self advocate with Down’s Syndrome who discusses the feelings of self worth and identity that come with this.

    Nobody, I repeat, nobody, thinks that you wishing for a better future for your daughter is a bad thing. What some of us may question is what constitutes ‘better’ and for who the definition of ‘better’ is best for. That is _not_ to have a dig at you but to ask you to challenge your own beliefs about disability.

  40. Ms. Clark February 23, 2008 at 20:54 #

    “But for some. even if the fantastic were possible, you would find doing so morally abhorrent.”

    You can’t separate the pressure to change (into an non-autistic person) that comes from the outside from pressure to change that comes from the inside.

    Just like bleaching my hair blonde, if I wanted to do that (I don’t), would the pressure to do that come from inside me (Oh, I’ll be blonde today…) or from the outside, “If I was blonde many poweful and influential people would see me as being of higher quality and if I added a nose job and blue contact lenses I’d be even more valued… if I had liposuction, a little nip and tuck around the eyes and the proper sized implants, I’d be even more valued…”

    Why is Jenny McCarthy a blonde with silicone implants? Hmmmm. No pressure to have that bimbo look… not in Hollywood.

    Anyway, there is no way to know what the person would be even if you started to rearrange their synapses chemically. There is no reason to assume that you can merely peel away the problems and leave only what can successfully deal with the world.

    Does Britney Spears successfully deal with the world? Has she ever? Really? Are you sure that if you peeled away your daughter’s autism related problems she would have absolutely no other problems? Would it be impossible for her to go on and become a drug addict or the wife of a wife beater? Sure about that? She couldn’t become a child abuser or a thief. Absolutely not possible, huh? She couldn’t be just unemployable for some other reason, maybe just really annoying and clingy? Or the kind of woman who would sleep with anything that moves?

    The thing is that there is a background assumption that with enough “gee whiz” science you can fix anything to be the way you want it, like you can pick the nose you want and get it from a plastic surgeon.

    This is a stupid assumption.

    I think people need to realize that monkeying around with other people’s synapses at any point could lead to disaster. Even Amaral’s plan to have moms with the bad blood choose surrogates to carry their babies is fraught with hundreds of potential problems. But in the Gee Whiz! mode you just say, “Mom has bad blood, find a mom with good blood and BINGO you get your non-autistic kid!” Or mom has bad blood, just hook up mom to am ACME blood cleaning machine and BINGO no more autistic kids. No side effects from all of this, no way, not possible! This is our brave new world(tm), you know! I suppose before they get that far they will try to put a bunch of bad blood thingies (anti fetal brain antibodies) into monkeys and then hook them up to blood squeegie machines while pregnant and see if the resultant baby monkeys are still hyperactive.

    So lets all re-read “Flowers for Algernon” and contemplate all this “Gee Whiz” science that can remove autism from the planet, or rather, remove autism from certain select mainly white, mainly well-monied families. Because I believe that’s the intent, not to offer it to a poor autistic person to improve his or her life, but to offer it to wealthy families that can not and will not cope with having defective child.

  41. mayfly February 24, 2008 at 20:59 #

    Ms Clark, your arguments are so superficial. Last I head people with large noses and small, err accoutrements did not have parents faced with declaring them incompetent, or worried about who to choose as their custodians, when they, the parents, die or become feeble. They don’t worry about some perverts, employed to take care of their children’s special needs, forcing themselves on their children, because the vetting process was flawed.

    Many autistic children suffer neuralgia. Carly mentioned she feels as if her legs were on fire and ants were crawling up her arms. My daughter when she was younger, before she made remarkable progress behaviorally, used to spend hours each day screaming, tipping over furniture, and meeting our efforts to console her by scratching until our arms were covered with rivulets of blood, and if she was quick enough biting us until us with as much force as she cpild muster. This is autism Ms Clark! All you seem to care about is social acceptance or at least you make social acceptance paramount. Never mind the excruciating pain many autistics feel.

    There are autistic children whose mental progress leaves mine far behind, but still have these intense episodes. You suggest to hope that someday that pain could be stopped would be so unloving. Give me a break.

    There were times when I was hesitant to reach out to my daughter, she bit so hard. But reach out to her I did. My wife tried to do so as well. Her pain threshold is less than mine and she did so somewhat less often. The result of this is that despite my wife’s role of primary caregiver and I mean by a long shot, our daughter is closer to me. I bring this up to say that for parents with children like mine to never believe your love is not reaching them, even when it seems too incredible to believe. My daughter at one time was almost completely withdrawn, and hardly ever smiled, we were lucky to see one in a month. Yes this did depress us. However we kept trying. If you have a child like this, even though you are rebuffed hundreds if not thousands at times. You are reaching your child. If you do this your child will get through this time and begin to return your love as they become less autistic.

    She still has tantrums, but they are short-lived and she very rarely attacks us. She’s more likely to bite the backs of her hands. So we out gloves on her. That is something which started about six months ago and has been diminishing lately, thank God.

    Now when I get home she wants piggy-back rides, likes me to reed Good Night Moon, and sing “A-rink-a-dink, a rink-a-dink, a rink-a-dink-a-do”, while she moves my hands to sign “I love you” to her at the appropriate times. Doing that makes her a very, very happy girl.

    Indeed most of the time she is very happy. She is happier now that she is less autistic. Call me callous if you like, but having a smiling child on my lap makes me happier than one who seems bend on causing me as much physical pain as possible.

    I do wish that at 10 years old she would know if she was holding a book up or down, she could find her way home from a half block away (perhaps she can but, I sure don’t want to put it to the test), that she played with the other children down the street.

    You list a series of iniquities. Do I think if my child were NT she would not make a bad moral decision? Ms Clark, “We all have sinned and fall short of the glory of God.” Of course she wouldn’t live a sinless life. I would hope that we would be able to give her the moral foundation to not make egregious ones. I do, however, want her to have the free will, the mental capacity, to make those decisions, and choose to take the right path.

    So lets all re-read “Flowers for Algernon” and contemplate all this “Gee Whiz” science that can remove autism from the planet, or rather, remove autism from certain select mainly white, mainly well-monied families. Because I believe that’s the intent, not to offer it to a poor autistic person to improve his or her life, but to offer it to wealthy families that can not and will not cope with having defective child.”

    Wow, is that self-righteous. When cochlear implants first came out many deaf parents did not want to get them for their children. Those children would not only not be deaf, but no loner a part of deaf culture. Most of these parents came to see those thoughts as selfish. They got their kids the implants and told them to soar with their new ability.

  42. mayfly February 24, 2008 at 21:10 #

    Kev, I’m not sure what the phrase “construct your own identity” means. What if a child is so disabled this is an impossibility?

    .

  43. Ms. Clark February 24, 2008 at 22:04 #

    Mayfly your response is superficial and misses my points, nearly entirely.

    There is **no way** to make your daughter normal. There is no way to give her the kind of life you want her to have. So we are talking about hypotheticals.

    My own ASD kid is susceptible to being taken advantage of. My kid can read, and speak normally, but that does not give my kid what it takes to take care of his/herself adequately so far, maybe by the the time this person is 35 there could be a chance that with enough support and warnings about how bad typical people can be that s/he could live alone with support.

    You have a very very disabled child. She might be reaching out to you constantly in her mind. She may never once have “rebuffed” you. The “rebuffing” is likely to be in your head.

    You can wish that your child was different, but to wish she was normal and even if you had a magic wand and could make her “normal” it would not mean she would be happy. It would not mean she would be safe. It would not mean she would make you happy.

    There are no guarantees with “normal” kids, they DO turn out to be thieves, promiscuous people abusers, they abandon babies, they abandon families, they rob, steal, become alcoholics, drug dealers, and they can live really petty and useless lives rather than contributing anything.

    The point is, that people assume that they could take their ASD kid and make them into a happy and healthy and productive, etc, idealized normal kid and there is NO way to do that. The nicest most moral parents can produce creepy kids.

    AND what we are talking about is taking a kid with a totally different childhood and grafting some kind of normal brain onto those not-normal childhood experiences.

    It’s ridiculous. Your daughter wouldn’t have the same childhood memories as a typical kid, there would be no way for her to recreate those memories of typical developing that never happened.

    The brain is a package with a history, it’s not a thing you can just “fix”.

    I understand you want a different kid with different problems. But understand that every kid, every person has problems. My NT kid has problems, and fairly serious ones at times. Things I can’t fix. My ASD kid does not have those particular problems but has other ones. My NT friends have problems, some have cancer, some have abusive spouses or ex spouses, some have kids who are a mess way more than my kids are. I have my own problems, some are serious, some are very serious, but I also have some skills that others don’t have. Do not think I live some kind of charmed shiny “Aspie” life. I never had such a life. I am still a target of bullying and extreme misunderstandings in every day life because I have Asperger’s.

    The thing is you have to **deal with** what was dealt you and not dream about what was not dealt you.

  44. mayfly February 25, 2008 at 00:40 #

    Ms Clark. I believe I understood your point perfectly. You compared minor cosmetic differences to a child with severely and negatively impacted with autism. My daughter has an eyebrow which is discolored and bushy. Under your logic I should be writing about how that so negative impacts her life. I don’t because it effects the quality of life in no way what’s so ever. Her, what society would call a blemish, is superficial her autism is not. To equate them is insulting. I don’t want a perfect child, I want my child to have a better life than the one the future holds unless she becomes less autistic.

    I take your point on rebuffing. The scratching and biting were not because she had made a choice to reject us. She didn’t make a choice to be almost totally withdrawn, her autism made her that way. Rebuffing implies intent. I should have said seems to rebuff you. This period was extremely hard on my wife, wanting to hold her child so, and at the same time fearful of the pain.

    I also said that I didn’t think she would lead a perfect life and would probably make bad choices, but we would try to give her the moral grounding to help her make the right decisions. Teaching a child right from wrong was never thought to have perfect results. However trying to live an upright life, being honest with your children about where you have failed (in some cases, when they are old enough), and the consequences of those failures both worldly and spiritual on yourself and others, can only help them to make the right decision. It does not guarantee it. Do you not try to teach your child to live to a moral code, be it based on God or not? I don’t think you need to accept God to be morally upright.

    We are also discussing hypotheticals. Keep in mind this thread was started when Kevin mentioned his feelings about a cure, and how he would feel that he had failed to inculcate enough of a feeling of self worth, should his daughter want a cure. The hypothetical cure I had supposed was without deleterious side effects. You simply add such side-effects in and argue against it. I don’t dwell on a cure daily or even yearly The chances are so remote, but when it comes to the hypothetical, I am
    very much in favor
    The possible future prophylactic measure I mentioned stemming from the PAK-21 study, was for a child in utero, not for a 10 year old.

    I mentioned the neuroligin study and suggested it may lead to palliative measures which make her less autistic and give her a better chance in life. What mitigations against autism are allowable? Apparently certain breakthroughs if they come to pass, you would declare Frakensteinian.

    It is an undeniable truth that as my daughter has become less autistic she has become happier. I expect the two would remain positively correlated, should a breakthrough occur.

    Autism is not a condition of stasis. A point often needed to be made to parents with a newly diagnosed child. The child will make progress, the child will become less autistic. Some children make such progress, that their original diagnosis is questioned, others, the low-functioning children make much less. However I’ve never heard a parent state that they regret the progress their child made, that their child was so much happier before the progress was made. Hypothetically , I can see a possible instance. When a child becomes cognizant of his autism, and rejections which come his way because of the inability to follow a social standard. But even here, I would find it hard to believe parents would be saddened by there child’s progress.

    One of the things that scares me is that if my child were abused, she wouldn’t be able to communicate it.

    My daughter has no skills and NT child does not have — except for the ability to light up a room with her smile, but I must admit to a small degree of prejudice there.

  45. Kassiane February 25, 2008 at 03:18 #

    Every treatment for everything has side effects. They are a fact of medicine. If it isnt strong enough to have side effects it isn’t strong enough to have EFFECTS.

    Regarding the neurolignin study, is this the one where they gave mice RTT and then undid it? Or is it one I haven’t seen? Because the one I reference has nearly no practical application for anyone apart from stating that “yes, the particular protein is replaceable later in life”.

    Regardless, being NT isn’t necessary for happiness or for communication. Being accepted is though, so it can make it appear that it is.

  46. mayfly February 25, 2008 at 04:06 #

    Kassieane, neuroligin and neurexin are the proteins by which neurons connect. The study is on the molecular structure of neuroligin-1 and neuroligin1-neurexin complex.

    People found long ago that when you have accelerated to close to the speed of light. and then try to send them around a bend many of them don’t make it. They go flying off. These X-rays were thought problematic, until someone had the idea of having them hit a target. Now there are machines built expressly to create these X-rays. They are known in the biz as light sources. The machines have gotten better and better. There is one being built that is hoped to able to record chemical reactions taking place.

    The machines are valuable in the world of material and pharmacological science, and to tell us how certain things such as pre and post synaptic proteins work. A couple of years ago one was used to recover most of the original work of Archlmedes despite it being written over by some monks in the 11th century or so.

    Also, remember this discussion was dealing with hypotheticals, i.e., even if there were no deleterious side effects.

  47. Kassiane February 25, 2008 at 09:49 #

    I do know which proteins those are. I was asking about the *study*. Do you have a link? There was one about a year ago that dealt specifically with reversing the regression which quite clearly had no bearing on anything except proving that, oh, older girls with RTT can make progress…I’d like to see if this one has other applications–the one I’m referring to, they killed the RTT gene but made it estrogen responsive and then gave the mice estrogen. Half died when they turned it on, incidentally.

    When discussing hypotheticals, personally I find it best to still stay realistic. Even with a hypothetical cure, there are going to be side effects. There is no perfect anything. The cure for epilepsy (the surgeries, not the drugs) has side effects, for example. There is no such thing as no side effects. Unrealistic hypotheticals set one up for a massive disappointment crash.

  48. Ms. Clark February 25, 2008 at 11:47 #

    Mayfly some sentences of mine you may have missed: “**I also want to point out that there’s a big difference between wishing to change one’s external body and wanting to change the very way ones mind IS constructed**.

    All this talk about a cure seems to throw away the reality of what we know is the cause of autism. It is how the brain is wired, and the brain appears to be wired drastically differently in autism.”

    I pointed out an example of how people try to change themselves in such a way that it may **look** like it’s a totally personal and independent choice (going for the bimbo look with implants and injections and bleach), but in fact the choice might be made under pressure (look like a bimbo, be a bimbo, cooperate on the casting couch or you don’t get the TV role.) This point you entirely missed in your rush to point out that there was a difference between getting a surgical alteration to one’s nose and getting oneself a new brain (i.e. becoming an unrecognizable to self different self) in an effort to have an imaginary trouble free life.

    You wrote:

    “If her problems went away tomorrow, she would still be a beautiful child, and her future prospects would be so much brighter.”

    The problem is that it is not possible for people to have no problems. But parents don’t want to replace their child with problems with a child with different problems, they want to replace their child with problems with a child with no problems.

    They imagine how it would be if they could peel off the problems they choose and replace them with no problems or minor problems (hangnails and a “B average” in school as opposed to an “A average”.) They don’t think that in the real world, if you try to change something you can easily end up with something worse. The law of unintended consequences and all. And then there’s the corollary, the law of you can’t see what good you have now… or something like that.

    I believe, in your case Mr. Mayfly, that you don’t want to peel off your child’s autism so much as you want to peel off her mental retardation. If that is separable from her autism (I don’t think it is).

    And monkeying with neuroligan and neurexin prenatally…, yes, how wonderful, but no one knows what kind of harm could be done with that kind of monkeying.

    There will always be handicapped kids, in this world. It’s just that some people when they set out to have kids make a contract with the universe (the universe doesn’t know about it) that they will not have a severely disabled child. So they are mad at the universe for giving them one. These things are supposed to happen to other people. Except that they happen to all kinds of people and without warning, often enough. And even if you have a kid that looks perfect he can develop cancer and die at age 3 or get run over by a car or choke on a penny or be kidnapped…

    Bad stuff happens to good people and to bad people. Difficult disabilities happen to wonderful children. I know I have one of them. **Wishing that I didn’t** doesn’t help anyone at all. It’s unrealistic and harmful in the long run.

    The answer is to demand (try) that people make room for disabled people because any one of us could be as disabled as my ASD kid or your ASD kid in a flash. **A right hemisphere stroke can make an adult have some superficial resemblance of traits of autism**. So in a way any NT parent could become superficially similar to their ASD kid in a flash. So do we all have a stake in making room for the weirdos and oddballs? Yes, we do.

  49. mayfly February 25, 2008 at 17:21 #

    Kassiane, I have online access to journals others may not have. As I said the paper was published in the Dec 20 2007 issue of Neuron. The details

    Structures of Neuroligin-1 and the Neuroligin-1/Neurexin-1? Complex Reveal Specific Protein-Protein and Protein-Ca2+ Interactions
    Pages 992-1003
    Demet Araç, Antony A. Boucard, Engin Özkan, Pavel Strop, Evan Newell, Thomas C. Südhof and Axel T. Brunger

    Also in that same issue

    Structural Analysis of the Synaptic Protein Neuroligin and Its ?-Neurexin Complex: Determinants for Folding and Cell Adhesion
    Pages 979-991
    Igor P. Fabrichny, Philippe Leone, Gerlind Sulzenbacher, Davide Comoletti, Meghan T. Miller, Palmer Taylor, Yves Bourne and Pascale Marchot

  50. mayfly February 25, 2008 at 17:27 #

    Kassiane, I have online access to journals others may not have. As I said the paper was published in the Dec 20 2007 issue of Neuron. The details

    Structures of Neuroligin-1 and the Neuroligin-1/Neurexin-1? Complex Reveal Specific Protein-Protein and Protein-Ca2+ Interactions
    Pages 992-1003
    Demet Araç, Antony A. Boucard, Engin Özkan, Pavel Strop, Evan Newell, Thomas C. Südhof and Axel T. Brunger

    Also in that same issue

    Structural Analysis of the Synaptic Protein Neuroligin and Its ?-Neurexin Complex: Determinants for Folding and Cell Adhesion
    Pages 979-991
    Igor P. Fabrichny, Philippe Leone, Gerlind Sulzenbacher, Davide Comoletti, Meghan T. Miller, Palmer Taylor, Yves Bourne and Pascale Marchot

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