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View Diary: An Autistic Speaks About Autism Speaks (50 comments)

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  •  the spectrum is pretty broad (5+ / 0-)

    I have two friends whose kids have autism. Both would be considered "high-functioning," and I understand why some autistics get offended and angry about organizations that are seeking a "cure" for this condition.

    On the other hand, if your child was on a different part of the spectrum, unable to care for himself or herself, unable to interact with other children, unable to speak or read or be toilet-trained, can you honestly tell me that you would not be looking for a "cure"? Would you not worry about what would happen to your child after you and your spouse died?

    •  Honestly, I would be looking for (6+ / 0-)

      a way to get through to the child, a form of communication that the child could understand, and then work from there.  Granted, I might not have much luck with it, but even then I'd prefer that futile search to molding the child into something he or she naturally wasn't...

      •  Great diary, codeman38 (0+ / 0-)

        Thank you, codeman 38.
        I treasure and adore my Auttie and Aspie friends, who are fascinating individuals with great strengths anyone might wish to emulate. Regrettably, not all neurologically atypical conditions are benign, and can be due to mercury/heavy metal and and mycoplasma poisoning.
        This is a good site for information on clearing toxins from the brain:
        http://www.autismwebsite.com/...

      •  question: if you read about children (3+ / 0-)
        Recommended by:
        njgoldfinch, Native Light, elie

        whose ability to communicate has improved following changes in diet and/or homeopathic remedies, does that make you mad at the parents?

        I have read about children who eventually progressed to the point of not being on the spectrum at all. I don't think that their parents "molded them into something they naturally were not."  

        One of my friends whose son is on the spectrum is home-schooling him and not making any effort to change his behavior (except to get him to eat a wider variety of food--there are only about five things he will eat). She loves the quirky things he says and doesn't worry about how he will make his way in the world. I completely understand and respect this attitude.

        However, if my child were in a different place on the spectrum, unable to make friends or communicate even with family, you can be damn well sure that I would be trying various natural remedies.

        One of my brothers was brain-injured at birth. I love him, but am I going to tell you that his brain injury has not diminished his quality of life? No way.

        His situation is different from autism, but he does have a limited ability to look after himself. He's 50, and he's fortunate that he has siblings to help him take care of his affairs. But if I could snap my fingers and "cure" the parts of his brain that were damaged by lack of oxygen at birth, I would do that in a heartbeat.

        So I am sympathetic to parents who are trying to "cure" their children's autism. I am sorry if this offends you.

      •  How do you feel about Lovaas training? (0+ / 0-)

        My son's half-sibling went through it at 3 years old and soon began to talk.  She had been eating as a way of coping, and jumping off of high furniture.  Now she is verbal, mainstreamed in school and doing well.  Even so, she will probably need a sheltered environment for the rest of her life, her mother thinks. The girl doesn't seem to have good insight into her condition, thinks it may be impermanent, etc.

        Nunca se deve confiar em pata de cavalo, cabeça de juiz e bunda de nenê.

        by rhubarb on Sat May 19, 2007 at 08:53:16 PM PDT

        [ Parent ]

        •  Behaviorism in itself OK; Lovaas, not so much (1+ / 0-)
          Recommended by:
          rhubarb

          Lovaas is, as you might have expected, quite controversial among the autistic community as well. Perhaps the best article I've seen on this is Canadian autistic advocate Michelle Dawson's "The Misbehaviour of Behaviourists".

          Behaviorism in and of itself can be useful-- even Dawson doesn't disagree with this; The problem is when, rather than just trying to train out truly dangerous behaviors, it's used to force behaviors that are stressful for the autistic (like eye contact, as I mentioned in another comment) or to remove non-destructive behaviors common to autism that, though odd, are in no way harmful.

          It should also be noted that, aside from autistics, Lovaas' original behaviorist projects also included one known as the Feminine Boy Project, which is exactly what it sounds like: trying to 'masculinize' boys who were effeminate, with the hope of stamping out homosexuality. And no, I am not making this up; it's referenced and cited in the Dawson article linked above.

      •  Hi (3+ / 0-)
        Recommended by:
        rocketito, teacherbill, Native Light

        I have been a teacher working with young autistic kids for more than 25 years.  I sobbed when I first found Temple Grandin's books.  Now I am a big fan of Amanda's films.
        I am so grateful that adults with Autism are speaking out.  I have been groping for answers for years and having my successe, but being shut down because I refused to be a member community who says Autism Speaks and ABA are the only way.
        I have hated ABA since it first came out, because it felt so disrespectful. Now I am actually running an ABA team with the hope that it can be done in a way that honors and supports the child's growth rather than trying to stamp out "behaviors".
        My approach with all children is to help them function and give them joy.  If  what I am doing doesn't address one of those things., it is not worth doing.
        Just my two cents.  I have forwarded your diary on to some colleagues.  

        Be the change you want to see in the world.

        by empathy on Sat May 19, 2007 at 09:46:13 PM PDT

        [ Parent ]

        •  Thank you! (3+ / 0-)
          Recommended by:
          njgoldfinch, Tigana, Native Light

          I'm so glad to hear that you're actually working with autistics in a way that actually respects them for who they are, working with them rather than against them.

          This seems to be one of the things that many in the ABA crowd simply don't get, from what I've noticed. For a group that so frequently discuss stimuli and responses, they often don't recognize a perfectly valid response to a stimulus on the autistic kid's part. Of course a kid's not going to be making eye contact, for instance, if he finds looking into someone's eyes to be overwhelming! It doesn't matter how hard you train the behavior of avoiding eye contact out of the child Skinner-style; eye contact is still going to be a source of stress...

          •  Eye contact (2+ / 0-)
            Recommended by:
            njgoldfinch, Native Light

            Eye contact can be difficult for introverts, not just for those on the autism spectrum.

          •  I think (0+ / 0-)

            that there is  a way of looking at things which is very black and white. Right or wrong.  It is about control and making people fit into a vision of normal/ mainstream.  
            Do you recall John Dean's book about Conservative Authoritarians? Conservatives Without Concscience  I feel that ABA lends itself to that kind of thinking. It's not about each person's unique gifts and potential, it's about everyone fitting into a box.  The box of good worthy valuable acceptable people.  
            Autistic, gay, muslim, fat, mexican...you don't fit.  You will have to prove to us that you can fit in.

            Be the change you want to see in the world.

            by empathy on Sun May 20, 2007 at 01:25:38 PM PDT

            [ Parent ]

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