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My 5 Year Old Has Aspergers and ADHD
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<blockquote data-quote="Marguerite" data-source="post: 108283" data-attributes="member: 1991"><p>Janna, to clarify - the diagnosis may change but how the child IS does not change. This means that if the child is seen at age 3 and given a diagnosis of Y Disease, then seen by someone else at age 10 and given a diagnosis of X Syndrome and definitely not Y Disease, t his doesn't mean the child has changed. It just means that inexact medical science did the best job it could and maybe came close, but didn't quite get it right. Coming close can mean the child gets some help in the appropriate range which can be better than nothing at all; it can also mean getting it badly wrong.</p><p></p><p>Example: "Life Behind Glass" was written by Wendy Lawson, now diagnosed as Asperger's. When she was 19 a psychiatrist asked her, "Do you hear voices?"</p><p>She replied, "Of course I do!"</p><p>She was at that point institutionalised for a number of years with a diagnosis of schizophrenia.</p><p>If the psychiatrist had probed a little further, he would have realised he had asked her a very stupid question, in her mind. because of course we HEAR voices, we don't SEE them, do we? The literal-minded Aspie had answered the question correctly but as a result of the psychiatrist misinterpreting her answer, she had a wrong diagnosis for ten years.</p><p></p><p>Wendy Lawson did not begin as someone with schizophrenia and then have her disability change to Asperger's. What happened was medical science got it wrong to begin with.</p><p></p><p>Janna, I think that is what has happened with Dylan.</p><p></p><p>My concern about "losing the diagnosis" is when someone comes along and sees a kid like difficult child 3, for example. His former school counsellor was a classic case - he looked out into the playground and saw difficult child 3 blending in (because they were all in the same uniform, he was hard to pick out) and he seemed to be not looking too different. her response was, "Isn't it great, his language delay is gone, he's caught up with his language performance, he's getting good marks in his tests, it's wonderful to see he's no longer autistic!"</p><p>Someone like that has the power to formally say, "he is no longer autistic," and use that to justify removing all support. The reality is far different - difficult child 3 was born autistic, he will always be autistic. BUT - through a lot of amazing effort, not least his own ongoing hard work, he is able to APPEAR to be fairly normal and he is functioning well. But there will be times when for various reasons his ability to cope goes out the window; then we will see the now-suppressed autism signs return, until his coping ability once more reasserts itself. difficult child 3 himself described this when he was 8 as "pretending to be normal." For him to lose the diagnosis would be cruel and unfair. His autism is a part of who he is. </p><p>If at some future stage some researcher (such as Tony Attwood, for example) comes along and defines sub-categories of autism more specifically, assesses difficult child 3 in detail including looking back over his history and then declares that instead of being in the category of high-functioning autistic, difficult child 3 is now in the newly defined category of, say, Attwood's Syndrome (described as a variant of high-functioning autism where they adapt to the point of seeming normal) then this wouldn't be either losing the diagnosis or changing the diagnosis, it would be REFINING the diagnosis.</p><p></p><p>A change in diagnosis would be if someone came along and said, "difficult child 3 never was autistic, in reality he has epilepsy, always has." Or maybe, "He used to be autistic, now the autism has morphed into hydrocephalus."</p><p>All ludicrous statements, by the way! At least in my examples.</p><p></p><p>When a kid is very young, it's hard to get it right with some disorders. But when the kid is older, it's easier for an especially bright kid to mask some symptoms, so either way it's not always easy for doctors to get it right.</p><p></p><p>We are what we are. Or as Popeye said, "I yam what I yam." And this is a wonderful thing.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 108283, member: 1991"] Janna, to clarify - the diagnosis may change but how the child IS does not change. This means that if the child is seen at age 3 and given a diagnosis of Y Disease, then seen by someone else at age 10 and given a diagnosis of X Syndrome and definitely not Y Disease, t his doesn't mean the child has changed. It just means that inexact medical science did the best job it could and maybe came close, but didn't quite get it right. Coming close can mean the child gets some help in the appropriate range which can be better than nothing at all; it can also mean getting it badly wrong. Example: "Life Behind Glass" was written by Wendy Lawson, now diagnosed as Asperger's. When she was 19 a psychiatrist asked her, "Do you hear voices?" She replied, "Of course I do!" She was at that point institutionalised for a number of years with a diagnosis of schizophrenia. If the psychiatrist had probed a little further, he would have realised he had asked her a very stupid question, in her mind. because of course we HEAR voices, we don't SEE them, do we? The literal-minded Aspie had answered the question correctly but as a result of the psychiatrist misinterpreting her answer, she had a wrong diagnosis for ten years. Wendy Lawson did not begin as someone with schizophrenia and then have her disability change to Asperger's. What happened was medical science got it wrong to begin with. Janna, I think that is what has happened with Dylan. My concern about "losing the diagnosis" is when someone comes along and sees a kid like difficult child 3, for example. His former school counsellor was a classic case - he looked out into the playground and saw difficult child 3 blending in (because they were all in the same uniform, he was hard to pick out) and he seemed to be not looking too different. her response was, "Isn't it great, his language delay is gone, he's caught up with his language performance, he's getting good marks in his tests, it's wonderful to see he's no longer autistic!" Someone like that has the power to formally say, "he is no longer autistic," and use that to justify removing all support. The reality is far different - difficult child 3 was born autistic, he will always be autistic. BUT - through a lot of amazing effort, not least his own ongoing hard work, he is able to APPEAR to be fairly normal and he is functioning well. But there will be times when for various reasons his ability to cope goes out the window; then we will see the now-suppressed autism signs return, until his coping ability once more reasserts itself. difficult child 3 himself described this when he was 8 as "pretending to be normal." For him to lose the diagnosis would be cruel and unfair. His autism is a part of who he is. If at some future stage some researcher (such as Tony Attwood, for example) comes along and defines sub-categories of autism more specifically, assesses difficult child 3 in detail including looking back over his history and then declares that instead of being in the category of high-functioning autistic, difficult child 3 is now in the newly defined category of, say, Attwood's Syndrome (described as a variant of high-functioning autism where they adapt to the point of seeming normal) then this wouldn't be either losing the diagnosis or changing the diagnosis, it would be REFINING the diagnosis. A change in diagnosis would be if someone came along and said, "difficult child 3 never was autistic, in reality he has epilepsy, always has." Or maybe, "He used to be autistic, now the autism has morphed into hydrocephalus." All ludicrous statements, by the way! At least in my examples. When a kid is very young, it's hard to get it right with some disorders. But when the kid is older, it's easier for an especially bright kid to mask some symptoms, so either way it's not always easy for doctors to get it right. We are what we are. Or as Popeye said, "I yam what I yam." And this is a wonderful thing. Marg [/QUOTE]
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