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Aspergers...the diagnosis going away?
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<blockquote data-quote="Marguerite" data-source="post: 433126" data-attributes="member: 1991"><p>I have known doctors and specialists form Australia whose work was integral in CDC guidelines. One bloke I knew very well worked in the US in Atlanta CDC for several years. I was heavily involved in his research and funding, he was not funded by any drug company. Most of his funding (that was not provided by the charity I worked for) came from the Australian government.</p><p></p><p>The article - I had problems within the first sentence. "Asperger's is a mild form of autism". NOPE. Not necessarily. I have two boys who are different, but both somewhere on the spectrum. difficult child 1 has a diagnosis of Asperger's but behaviour-wise is more typical of autism. difficult child 3, with his language delay, is the more social one. He has also been able to mentally multi-task, where his supposedly "milder form of autism" brother cannot. of the two, it is my Aspie son with the worse prognosis.</p><p></p><p>I personally have found that the availability of the term "Asperger's" has been very useful for us. It distinguishes between our boys, first and foremost. Because they ARE different, and it helps highlight this. if both met the criteria for autism, it would still be okay (as far as the labels are concerned) but the different labels have made it easier to explain the differences to other people.</p><p></p><p>Next, the label "Asperger's" has been useful to have around, to clarify that it does NOT apply to difficult child 3. We have said this over and over, especially to educators who think they know more than our kids' doctors. "No, difficult child 3 is NOT Aspie, he had a history of language delay which means his diagnosis is, and always will be, autism."</p><p>But Asperger's is also autism. So how can you say, "My child is not Aspie, he has autism."? THAT needs to be clarified...</p><p></p><p>I still remember difficult child 3's elementary school counsellor (very heavily involved in our IEP meetings etc). We have always had overwhelming evidence in support of the autism diagnosis. This counsellor had also done her own testing (without my permission or knowledge). And one day as we came out of an IEP meeting for him, we stood together, school counsellor & I, on the top of the school office steps and looked way down into the playground. All the kids were in the compulsory school uniform of grey pants and blue shirt, and school hat ("no hat, no play" is a strict rule in Australia at any time of the school year). I could just make out difficult child 3 walking along the painted lines of the outdoor basketball court, now full of kids milling around. He kept on walking, feet following the painted lines. Then the school counsellor said to me, "You must be so proud of how well difficult child 3 is doing. Look at him down there, in the crowd - isn't it wonderful that he is no longer autistic?"</p><p></p><p>EXCUSE ME? </p><p></p><p>She meant that in her opinion, "because he can talk now," the autism diagnosis no longer applied. I pointed out that the diagnosis requires HISTORY of language delay, and once more told her the story of the swan on the lake - it looks serene as it glides, but beneath the surface of the water there has to be a lot of furious activity to make that semblance of serenity so possible.</p><p></p><p>And again, it happens now at difficult child 3's correspondence school. We go in to visit often, and almost every time some teacher will comment to me about difficult child 3 being Aspie. "No, he's autistic," I say.</p><p>"Well yes, Asperger's is a form of autism."</p><p>So again, I explain about the difference between Asperger's and what I call "full-on autism". </p><p></p><p>Hmm, maybe I should write to CDC about them using the term "full-on" to help distinguish.</p><p></p><p>The term "Asperger's" will continue, I am sure. At least in informal usage. And for most of us, that is enough in our day to day lives.</p><p></p><p>But I do wish they would stop mucking around with it and get it right...</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 433126, member: 1991"] I have known doctors and specialists form Australia whose work was integral in CDC guidelines. One bloke I knew very well worked in the US in Atlanta CDC for several years. I was heavily involved in his research and funding, he was not funded by any drug company. Most of his funding (that was not provided by the charity I worked for) came from the Australian government. The article - I had problems within the first sentence. "Asperger's is a mild form of autism". NOPE. Not necessarily. I have two boys who are different, but both somewhere on the spectrum. difficult child 1 has a diagnosis of Asperger's but behaviour-wise is more typical of autism. difficult child 3, with his language delay, is the more social one. He has also been able to mentally multi-task, where his supposedly "milder form of autism" brother cannot. of the two, it is my Aspie son with the worse prognosis. I personally have found that the availability of the term "Asperger's" has been very useful for us. It distinguishes between our boys, first and foremost. Because they ARE different, and it helps highlight this. if both met the criteria for autism, it would still be okay (as far as the labels are concerned) but the different labels have made it easier to explain the differences to other people. Next, the label "Asperger's" has been useful to have around, to clarify that it does NOT apply to difficult child 3. We have said this over and over, especially to educators who think they know more than our kids' doctors. "No, difficult child 3 is NOT Aspie, he had a history of language delay which means his diagnosis is, and always will be, autism." But Asperger's is also autism. So how can you say, "My child is not Aspie, he has autism."? THAT needs to be clarified... I still remember difficult child 3's elementary school counsellor (very heavily involved in our IEP meetings etc). We have always had overwhelming evidence in support of the autism diagnosis. This counsellor had also done her own testing (without my permission or knowledge). And one day as we came out of an IEP meeting for him, we stood together, school counsellor & I, on the top of the school office steps and looked way down into the playground. All the kids were in the compulsory school uniform of grey pants and blue shirt, and school hat ("no hat, no play" is a strict rule in Australia at any time of the school year). I could just make out difficult child 3 walking along the painted lines of the outdoor basketball court, now full of kids milling around. He kept on walking, feet following the painted lines. Then the school counsellor said to me, "You must be so proud of how well difficult child 3 is doing. Look at him down there, in the crowd - isn't it wonderful that he is no longer autistic?" EXCUSE ME? She meant that in her opinion, "because he can talk now," the autism diagnosis no longer applied. I pointed out that the diagnosis requires HISTORY of language delay, and once more told her the story of the swan on the lake - it looks serene as it glides, but beneath the surface of the water there has to be a lot of furious activity to make that semblance of serenity so possible. And again, it happens now at difficult child 3's correspondence school. We go in to visit often, and almost every time some teacher will comment to me about difficult child 3 being Aspie. "No, he's autistic," I say. "Well yes, Asperger's is a form of autism." So again, I explain about the difference between Asperger's and what I call "full-on autism". Hmm, maybe I should write to CDC about them using the term "full-on" to help distinguish. The term "Asperger's" will continue, I am sure. At least in informal usage. And for most of us, that is enough in our day to day lives. But I do wish they would stop mucking around with it and get it right... Marg [/QUOTE]
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