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Janna's post has me thinking...
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<blockquote data-quote="Marguerite" data-source="post: 89428" data-attributes="member: 1991"><p>Good point about the need for specifics, Janna. I guess we are fairly slack down here about labels too, we just look at the kid and say, "What help does he need?" and take it from there.</p><p></p><p>Michele, there's nothing wrong with SSRI in autism, if it helps the anxiety. (And when I say "autism" I actually mean anything on the Pervasive Developmental Disorder (PDD) scale, I'm a broad broad). And difficult child 1 was told "definitely not autism, definitely not Asperger's," first by an experienced psychologist (who worked with autism) when he was 6, and then at 16 by an autism clinic. difficult child 1's pediatrician says Asperger's, so does a highly qualified psychologist (even more experienced than the first one). So there can be dispute. The pediatrician insists easy child 2/difficult child 2 is NOT Aspie, even though she herself feels she is. So we treat easy child 2/difficult child 2 as an Aspie, to all intents and purposes. Her ADHD label entitles her to support anyway and from there, the support is determined by the need rather than diagnosis. Pinning down the label now makes little different to what services she can access.</p><p></p><p>difficult child 3 watched that program on TV yesterday. he actually called my attention to it. It did open a couple of doors for me to explain to him how we were able to help him. I also pointed out that a lot of his amazing progress is due to his own efforts and his brains. For difficult child 3, the key to getting him in touch with the world and language, was his hyperlexia. It still is the main pathway for him. It works, so we use it.</p><p></p><p>There are probably a lot of things we should have done that we either didn't know about or didn't have access to. We invented a lot of our own techniques and tricks which worked for us. We always used the principle of "<img src="/community/styles/default/xenforo/smilies/2012/censored2.gif" class="smilie" loading="lazy" alt=":censored2:" title="censored2 :censored2:" data-shortname=":censored2:" /> it and see," always following through with more if we found something to work. The labels got us access to services but there really hasn't been much official support; we've done most of it ourselves. There is a lot more I want to get access to, but it's taking time, effort, money and a lot of driving to get to places.</p><p></p><p>I can thoroughly recommend CBT especially for the anxiety and any other behaviour issues. But you need to follow through at home as well, not just expect it all to happen in the therapy sessions. We put some behaviour modifications in place at home following recommendations; some worked, some didn't. We stayed with what worked and tried to modify or adapt what didn't.</p><p></p><p>We also made a lot of mistakes with difficult child 1. Looking back, it would have been easy for him to get a Tourette's diagnosis, with all the noises he kept making. It drove us crazy, we kept punishing him and now we know he just couldn't help it.</p><p></p><p>Within the diagnosis, there is still the child. Each child has their own characteristics, their own personality. It's easy to see the child as completely subsumed by the condition, but that's not right - the child is a package deal. It's too hard to identify where one begins and the other leaves off. So you manage the package. Personality-wise, difficult child 3 is far more like easy child than difficult child 1. I can see personality quirks of husband's father in difficult child 3 and easy child 2/difficult child 2. difficult child 1 looks like my father and is laid-back and subservient like my older brother. easy child is a spitfire, a go-getter, a mix of a number of family members. Then you overlay the autism on top of it all, plus the ADHD - quite a mix.</p><p></p><p>We do what we can do. And when we tell the world that we've found a cure, I would hope we would check our facts first and not confuse the issue with personal definitions that have little relevance to the medical fraternity. Failing that, we would need to at least define what we mean and make it clear. "I cured autism" really is not as helpful as it sounds, especially when you follow it up by qualifying it as, "Well, I didn't really cure it, he's always going to have some traits, like someone who's been injured and who still has scars." Unless you are inside the child's head, or getting some input on the topic from the child, you really can't make such statements. </p><p></p><p>In the same way, I feel it is wrong to say that someone has made so much improvement that t hey can "lose the diagnosis" because I feel that is doing a disservice to the person. They are doing well because they are masking the condition, they have adapted well. But to lose the diagnosis is to deny the amazing efforts involved, continuously, in trying to pass as 'normal'. I don't like "cured". It implies a magic wand waved somehow, which is frankly arbitrary and offers no hope. But 'adapted" or "masked" IS a possibility, but it's not entirely dependent on parental efforts. A lot of it depends not only on the parents' efforts but also on the child's, and MOSTLY on capability. difficult child 3 is doing amazingly well. So is difficult child 1. But they are frankly doing the best they can. And so is the boy down the road, who is ten years old and still mostly non-verbal. HE is also a success story, because he has made amazing progress. </p><p></p><p>Sensationalist stories are intended: first, to sell books (and a concept) and second, to give hope. But I think they often fail in the second aim because of the over-zealous and often evangelistic fervour used in their promotion. Instead of giving hope they make us feel like failures if we don't instantly achieve the same results. If we refuse to mortgage our home and use the money to chase a cure, we are seen as failing our kids. I'd rather balance things off with the surety that we won't at some future stage be living out of our car.</p><p></p><p>We expect medical science to be as exact and predictable as a chemical reaction. Mix A with B, you get C. But medicine is very inexact. It is also very imperfect. A lot of diagnosis is, frankly, guesswork and estimation. Probabilities. Educated guesses.</p><p></p><p>So always keep an open mind. And never take anything personally.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 89428, member: 1991"] Good point about the need for specifics, Janna. I guess we are fairly slack down here about labels too, we just look at the kid and say, "What help does he need?" and take it from there. Michele, there's nothing wrong with SSRI in autism, if it helps the anxiety. (And when I say "autism" I actually mean anything on the Pervasive Developmental Disorder (PDD) scale, I'm a broad broad). And difficult child 1 was told "definitely not autism, definitely not Asperger's," first by an experienced psychologist (who worked with autism) when he was 6, and then at 16 by an autism clinic. difficult child 1's pediatrician says Asperger's, so does a highly qualified psychologist (even more experienced than the first one). So there can be dispute. The pediatrician insists easy child 2/difficult child 2 is NOT Aspie, even though she herself feels she is. So we treat easy child 2/difficult child 2 as an Aspie, to all intents and purposes. Her ADHD label entitles her to support anyway and from there, the support is determined by the need rather than diagnosis. Pinning down the label now makes little different to what services she can access. difficult child 3 watched that program on TV yesterday. he actually called my attention to it. It did open a couple of doors for me to explain to him how we were able to help him. I also pointed out that a lot of his amazing progress is due to his own efforts and his brains. For difficult child 3, the key to getting him in touch with the world and language, was his hyperlexia. It still is the main pathway for him. It works, so we use it. There are probably a lot of things we should have done that we either didn't know about or didn't have access to. We invented a lot of our own techniques and tricks which worked for us. We always used the principle of ":censored: it and see," always following through with more if we found something to work. The labels got us access to services but there really hasn't been much official support; we've done most of it ourselves. There is a lot more I want to get access to, but it's taking time, effort, money and a lot of driving to get to places. I can thoroughly recommend CBT especially for the anxiety and any other behaviour issues. But you need to follow through at home as well, not just expect it all to happen in the therapy sessions. We put some behaviour modifications in place at home following recommendations; some worked, some didn't. We stayed with what worked and tried to modify or adapt what didn't. We also made a lot of mistakes with difficult child 1. Looking back, it would have been easy for him to get a Tourette's diagnosis, with all the noises he kept making. It drove us crazy, we kept punishing him and now we know he just couldn't help it. Within the diagnosis, there is still the child. Each child has their own characteristics, their own personality. It's easy to see the child as completely subsumed by the condition, but that's not right - the child is a package deal. It's too hard to identify where one begins and the other leaves off. So you manage the package. Personality-wise, difficult child 3 is far more like easy child than difficult child 1. I can see personality quirks of husband's father in difficult child 3 and easy child 2/difficult child 2. difficult child 1 looks like my father and is laid-back and subservient like my older brother. easy child is a spitfire, a go-getter, a mix of a number of family members. Then you overlay the autism on top of it all, plus the ADHD - quite a mix. We do what we can do. And when we tell the world that we've found a cure, I would hope we would check our facts first and not confuse the issue with personal definitions that have little relevance to the medical fraternity. Failing that, we would need to at least define what we mean and make it clear. "I cured autism" really is not as helpful as it sounds, especially when you follow it up by qualifying it as, "Well, I didn't really cure it, he's always going to have some traits, like someone who's been injured and who still has scars." Unless you are inside the child's head, or getting some input on the topic from the child, you really can't make such statements. In the same way, I feel it is wrong to say that someone has made so much improvement that t hey can "lose the diagnosis" because I feel that is doing a disservice to the person. They are doing well because they are masking the condition, they have adapted well. But to lose the diagnosis is to deny the amazing efforts involved, continuously, in trying to pass as 'normal'. I don't like "cured". It implies a magic wand waved somehow, which is frankly arbitrary and offers no hope. But 'adapted" or "masked" IS a possibility, but it's not entirely dependent on parental efforts. A lot of it depends not only on the parents' efforts but also on the child's, and MOSTLY on capability. difficult child 3 is doing amazingly well. So is difficult child 1. But they are frankly doing the best they can. And so is the boy down the road, who is ten years old and still mostly non-verbal. HE is also a success story, because he has made amazing progress. Sensationalist stories are intended: first, to sell books (and a concept) and second, to give hope. But I think they often fail in the second aim because of the over-zealous and often evangelistic fervour used in their promotion. Instead of giving hope they make us feel like failures if we don't instantly achieve the same results. If we refuse to mortgage our home and use the money to chase a cure, we are seen as failing our kids. I'd rather balance things off with the surety that we won't at some future stage be living out of our car. We expect medical science to be as exact and predictable as a chemical reaction. Mix A with B, you get C. But medicine is very inexact. It is also very imperfect. A lot of diagnosis is, frankly, guesswork and estimation. Probabilities. Educated guesses. So always keep an open mind. And never take anything personally. Marg [/QUOTE]
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