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. mayfly February 25, 2008 at 17:31 #

    Kassieane, as i said it’s the 20_Dec-2007 issue of Neuron

    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

  2. mayfly February 25, 2008 at 17:32 #

    Kassieane, as i said it’s the 20_Dec-2007 issue of Neuron

    Structures of Neuroligin-1 and the Neuroligin-1/Neurexin-1? Complex Reveal Specific Protein-Protein and Protein-Ca2+ Interactions
    Pages 992-1003

    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

  3. ccc February 25, 2008 at 19:13 #

    Arthur–if you’re still reading–I hope you let Carly go to an online high school, there are such places in this era of distance learning and homeschooling. Carly is great! Please get her involved in letting scientists and researchers know about the first hand experience of autism. The world has a lot to learn from her.

  4. ccc February 25, 2008 at 19:45 #

    Oh, and btw, regarding boys, it’s folk wisdom that there are a lot of “exceptionally beautiful” ASD kids out there. Carly might have her pick of boys who would be not only accept and understand her as she is but be really cute 😉 You might want to tell her about Autcom.

  5. Kassiane February 25, 2008 at 20:00 #

    I’ve got connections, I can get my hands on Neuron. Thank you.

  6. Ettina February 28, 2008 at 23:01 #

    “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.”

    “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!”

    Is it? Self-injury is certainly a characteristic of autism. So are self-care problems. Neuralgia may be, I’m not sure if there’s any evidence about that. But all those things are only a small part of what autism is.
    Here are examples of other parts of what autism is:
    A child trilling, grinning and flapping his hands in delight at the beauty of a spinning fan or the fun of swimming.
    A person visualizing a 5th dimensional universe (an ability I’m in awe of that the only people I’ve met who can do this are autistic).
    A girl surrounded by cats, who like her because she acts a bit like a cat herself and loves to please them.
    A boy diving for a toy in the bottom of the pool, oblivious to everyone else, continuing to try long after most would lose interest and finally coming up with the toy.
    All of these are real examples of autistic people I know. All of them are autistic 24/7. All of them have problems (for example, the boy who loved fans also screamed, bit people and pulled hair), but those problems are not all of what autism is for them. These snippets are much more representative of who they really are than the problems they have, and are not ‘in spite of’ autism but because of it. I know many autistic kids, and even when we didn’t ‘click’ well I saw the beauty in who they were. They are not normal kids afflicted with a disorder. They are fundamentally different in beautiful ways. It saddens me how many people see only the problems in how they differ.

    “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 Autism and Development Disorders that so attest.”

    ABA is not actually proven effective. A standard in experiements with ABA is to use a baseline-treatment-baseline or baseline-treatment-baseline-treatment design, and almost always, that study design shows that the behaviors learnt through ABA revert back to normal levels (or close to) as soon as ABA is stopped. Granted, there is some evidence that longer duration of treatment either doesn’t revert back or reverts back much more slowly, but not enough to constitute proof. In a recent review I did of ABA, only a single study out of 20 or so lasted long enough to test that. If you read Punished by Rewards by Alfie Kohn, he reviews a number of studies that found that in many cases the learnt behavior reverted back to *lower* than baseline levels. For example, some children were rewarded for using magic markers to draw, but not crayons. At baseline, they had no overall preference. When rewarded, they rapidly developed a preference for magic markers, but when the rewards were withdrawn, they preferred crayons (I may not have the coloring utensils correct, but the overall point is).

    “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.”

    Why is ‘progress’ always viewed as becoming less autistic? That’s a totally inaccurate way of viewing it, and it encourages the idea that autism *is* a condition of stasis. Why is it that if the kid learns anything or develops *at all*, this is portrayed as becoming less autistic? I’ve never heard anyone remotely knowledgable describe a Down Syndrome child learning things as ‘becoming less DS’.

  7. arthur March 2, 2008 at 03:56 #

    hey guys. It’s Carly Fleischmann’s dad. just remember, when Carly says she wants to be “normal”, that she’s a 13 year old. her neurotypical twin sister also wants to fit in. What 13 year old doesn’t? we’re raising her to be proud of who she is, but as a teenager, all kids just want to be part of a crowd and not be “weird”. who knows what her opinion will be in 10 years??

  8. arthur March 2, 2008 at 04:08 #

    oops. just realized i posted on this blog already and said the same thing twice. sorry. should have taken the time to go back thru the posts. anyway, thank for all the kind things have said. carly is her own person – we cant make her do anything she doesnt want. ABA, however, has helped her learn how to do things that make her life easier. no one’s trying to morph her into something she’s not. just give her the tools to be more independent and fulfilled.

  9. Ettina March 6, 2008 at 22:30 #

    I didn’t want to fit in at 13. I never had much of a desire to emulate other people, and being bullied convinced me that I didn’t want to be like the bullies. It’s odd, even though I’m considered high functioning and Carly low functioning, she seems more normal than me in some things. I also have never been interested in going on a date.

  10. supporter March 29, 2008 at 19:47 #

    Why isn’t anyone even asking for the most basic level of scientific evidence?

    If you support autistic kids, then you need to ask for very serious evidence, for very serious claims.

    Where is the scientific evidence?

    The software she uses appears to create words from a few letters…and one assumes matches new words within the sentence according to rules of grammar, etc.
    Anyone see the danger here?

    Does anyone have links that show where completely independent scientists have tested Carly, without the computer system, or her ABA people running the show?

    The only way to prove this is really happening, and is not being created by a computer program, are for proper scientific tests to be done.

    This is too important an issue to accept on “faith”. That computer program could easily create words and grammar, and then if that text were edited, maybe they are all fooling themselves?

    The only way to find out for certain is to get proper tests done. (that should have been done long before they went to the media, of course).

    Also, if it costs up to $100,000 a year for each child to get the treatment, the companies providing this have a huge financial incentive here, 10 kids is $1 million gross.

    So no one is accusing anyone of anything, of course.

    But this is far from “proven”.

    This is all very dangerous, as with new computer software its easy to create words.
    Even MS word does it, so does your browser…it inserts words from a database.

    So they need to take Carly into 100% independent research labs, and get her fully tested. This does NOT appear to have happened.

    What if the software is doing this?

    All they have to do is get the proper tests done, peer-reviewed, double-blind, and then the evidence will be in.

    With no objective tests, then there is no proof.
    So far, we have not seen any actual scientific evidence.

  11. Tammy April 18, 2008 at 04:28 #

    This is Carly’s mom here. Carly can write without the software but we got it recently to speed her up — ie. we know that she already knows how to spell the words so this just helps her pace and focus. As for grammar –it is not at all part of the software –it is purely a vocabulary aid and it is based on words she already uses and tends to use.. and my daughter is not a human lab rat. Assessment is an ongoing part of her programming.. that is enough.

    As for us telling her she needs to be normal or implying our message that she is not acceptable as autistic — how presumptive and arrogant — you have no idea what goes on in our family or in our minds and hearts. We don’t expect a cure –we want Carly to be happy and and independent as possible -just as we want that for our other two kids.. that is the purpose of all this help for her. We have worked like this with her not to make her normal but to give her a means to communicate –imagine that your mouth did not work — Carly is not non verbal in the traditional sense — she has severe apraxia and literally cannot form words.. that doesn’t mean she doesn’t have a ton of language and things to say– it would be cruel to do anything but what we have done for her –she is a very intelligent girl who has until recently, been incredibly misunderstood and written off by everyone except her family and therapists who have been with her for years. We all knew how smart she was and so we could not give up.

    Speaking of Dov Shestack in an earlier entry, we were in LA this week and Carly met Dov for the first time and they hit it off wonderfully and were typing back and forth to eachother.. it was amazing…so all you Monday morning quarterbacks and Michelle Dawsons out there who think you can speak for our daughter and our family.. take a bite of humble pie and back off please…

  12. Michelle Dawson April 18, 2008 at 06:01 #

    Hi Ms Starr,

    There’s only one of me, and I’m responsible for my work and writing, which is entirely on the public record.

    I’m going to repeat what I’ve written over and over, which is that I have not claimed to represent or speak for other autistics (or families)–unless individual autistics (or families) have directly told me to.

    Re what I’ve written here, I went back and read it again (it’s been a while). Looks like I wrote about my own experiences, and reported a bit from the published science (this can be verified), as well as about testimony by an autistic child in the Wynberg case (which is on the public record). I provided this factual information in response to other comments.

    In response to further comments, I later raised concerns about autistics (those many autistics who have not been in ABA programs starting early in life) being written off.

    I did not write anything here about your family or your daughter, except that you were involved in Wynberg (this can be verified by reading the style of cause) and that I think Carly is totally cool, has great ideas, and should be listened to (as should all autistic children, including the boy who testified in the Wynberg trial).

    This apparently offended you, as did everything else I wrote here. I don’t know why. And I can’t guarantee that I’ll never, ever again state that I think Carly is totally cool, has great ideas, and should be listened to (as should all autistic children), etc. And I’m going to keep on objecting to autistics being written off. Sorry.

    Ms Starr, I will never, ever forget the letter you sent me out of the blue, in which you made enormous assumptions about my life (in some cases, my very private life), including that, e.g., I have never been hit by a car, never had other bad experiences, etc. I would never make those assumptions about any other human being, much less about a total stranger.

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