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An Angry Vent about a doctor (long)
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<blockquote data-quote="Marguerite" data-source="post: 359821" data-attributes="member: 1991"><p>I'm back now.</p><p></p><p>You are right to be concerned. Also right to be frustrated with this doctor who seems to want to play mind games with you, to cover up her own inadequacy and paranoia over you having more tan a faint clue about your own child.</p><p></p><p>If you can, get another opinion, preferably far away from this person. Find a neuropsychologist for an assessment. If you can, get a referral from your local autism association. The problem is, the understanding of autism has changed a lot in recent years, it has broadened (thankfully) which means some kids who previously would have been left without a diagnosis, now have a label that covers them and can be used to get support. And although it shouldn't work that way (get the label before help can be given) unfortunately, too many areas do work that way and the effort to fight them can be just too much, on top of what you're already trying to do with raising a very demanding child.</p><p></p><p>Another problem - girls tend to be atypical. A girl with Pervasive Developmental Disorder (PDD) in some form can sometimes seem more capable, especially in areas usually considered classic autism symptoms. Also, the smarter the child in general, the better they can mask the symptoms. They're not doing it to be deceptive, but because the one thing they want (like so many of us) is to fit in. Someone can be autistic, but still aware they are different and very much wanting to fit in. </p><p></p><p>Rules are important. While some rules are obvious and often written down, these kids observe those around them and in their own minds, analyse events in order to determine what the rules REALLY are. For example, at difficult child 3's school there was a school rule, "Do not hit other people. The punishment is detention." That was written down.</p><p>But difficult child 3 observed that it didn't always work that way. Kids would hit him at times and those kids would not get into trouble. But often when he hit these kids back, he would get into trouble. He couldn't work out that the other kids knew when the teachers weren't looking. For difficult child 3 with no theory of mind, he believed that what HE saw, so did everyone else including teachers. So if difficult child 3 saw a kid hit him, then he was convinced the teachers must know it too - every thought in his own head was surely there for everyone to see? So to difficult child 3's mind, the rule became, "Do not hit others or you will be put on detention. However, if you hit difficult child 3, that won't be punished."</p><p>Then difficult child 3 found that when he hit back, he would be put on detention. But other kids would hit and push each other, and not get into trouble. He saw it happen often. So the rule became in his mind, "It's wrong to hit other people, unless that person is difficult child 3. Then it's OK." Also came the rule, "difficult child 3 will be in trouble, no matter what he tries to do. It is because he is difficult child 3."</p><p></p><p>We had similar problems with difficult child 1 - he believed he was a bad person because he was made tat way. He was always getting into trouble for his inability to sit still, so he 'learned' that his fate in life was to be in trouble. It was to his mind because he simply was a bad person.</p><p></p><p>It takes a lot of effort and a lot of positive reinforcement, to undo such damage.</p><p></p><p>Keeping a diary, putting it all in writing, is a good way to keep your confidence in what you know about your child. It also helps reinforce it when what is written in the diary includes observations by others, including teachers. </p><p></p><p>Another thing that you probably need to do, to help you in this sort of situation - take along some notes, the questions you want answered and any points you want to make, put them in writing before your appointment. Also take your notebook and pen in with you and make notes. Any doctor or therapist who looks askance at this is someone who doesn't get it. I've only a couple of times had a doctor or similar, get annoyed with me for taking notes. And each time, they turned out to not be good doctors for me, for various reasons. </p><p></p><p>I also sometimes have found a doctor or similar react unfavourably to my technical or medical knowledge. Again, I feel, with hindsight, that they feel threatened by it because they need to feel superior. And frankly, I prefer to work with my doctors and therapists as team players, not as someone gazing adoringly at a specialist on a pedestal. I need to know, I need to be informed, and similarly if I have something to contribute then I will, and any doctor who doesn't like it just has to accept it or find me moving on to consult someone who is not so insecure.</p><p></p><p>I don't big-note myself for having the knowledge I do - if a doctor says to me, "You sound like you've read up on this. Are you a health professional?" I tell them the truth. Plain and simple - I've studied to a certain extent as part of my qualifications. I see no reason to hide my knowledge, or to apologise for it.</p><p></p><p>In the same way, when having to cope with a child like mine, I've learned a lot over the years. And living with it, I recognise autism in its various forms very readily. My kids reckon I see autism under every rock, but I don't believe it's because I'm obsessed with it or have a one-track mind; I think it's because I'm so familiar with it, that I know it so readily when I do encounter it. Of course I don't go up to total strangers and say to them, "I think your child has autism," because I don't know them or where they are on their journey. But if someone asks me, I will venture an opinion if I think it is appropriate to do so. I also emphasise, I am only a parent, I do not have qualifications to make a diagnosis.</p><p></p><p>I have found, in my case, that doctors etc who find my knowledge discomforting also tend to not be a good fit for me in other ways. Most recently, my rheumatologist has fallen into this category. My gastroenterologist also at first seemed discomforted by my knowledge, until he seemed to accept it when I said, "You are the doctor. I have some knowledge form my studies, but your qualifications are more detailed, of course, and also more recent. While it means you won't have to explain things in simple detail, I do want to be kept fully informed so I can understand."</p><p>The gastroenterologist seemed happy with this. The rheumatologist, however, keeps asking me, "Why do you seem to know so much?" as if he has forgotten (he probably has). Plus he doesn't like complex questions, he likes to give simple answers and when I don't find the answer sufficiently enlightening, he gets testy with me for asking more questions. Also I began to feel he was not telling me stuff I needed to know, and instead dishing out a formulaic approach to treatment which was not in my best interests, so I've asked my GP to find me someone else, especially since the rheumatologist said to me, "Since you don't want to take prednisone, I don't think there's any point you seeming me regularly. Only come back to see me if your symptoms return."</p><p>Well, the symptoms couldn't return, because they had never gone away! And I still want answers, I still want someone to REALLY keep tabs on my condition and help find out how to treat this - and this guy doesn't seem interested. I don't worship him enough, plus I refused the treatment he wanted (because all my other doctors were horrified at the damage prednisone was doing to their treatment of me).</p><p></p><p>What I'm saying - you need your health professionals to be team players. In the team are all the other health professionals as well as the patient, and the patient's family. While it is correct to listen to the doctor and take their professional advice, it is also important to inform yourself and use your knowledge to help. Clearly if your information is wrong and the doctor tells you, then you accept this and learn from it. </p><p></p><p>My mother in law used to be a nurse. She now has a lot of health problems (old age, too) and still hides her past experience because she says, "doctors don't like it if they find you know the terminology. They don't like it if you're too knowledgeable."</p><p>But the last few times she's been in hospital, we've deliberately blown her cover and told them - "she's an ex-nurse. Use that information, you might get better results from her. Don't treat her like an idiot, she resents it. But she won't let on she understands, so to a certain extent she deserves it."</p><p></p><p>It's an old attitude, one that these days is misplaced. Or should be. </p><p></p><p>Frankly, it's an attitude that only gets in the way.</p><p></p><p>Also, and tis is my own personal observation, the one branch of the health professions where I've seen the most paranoia and the most instability, is in psychology. Lately I've seen far less of it, most psychologists I've encountered in recent years have been balanced, stable, personally secure. But occasionally I come across one who still seems to have problems, and I find I just can't work with them.</p><p></p><p>I don't know why it's in psychology, mostly. husband said he noticed the same thing when he was studying psychology at uni - he said the lecturers were all nuts, and had a massive collective chip on their shoulders about being disregarded in the health professions.</p><p></p><p>So if this therapist is one such - walk away. Get a referral to someone else who won't waste your time trying to make you feel insecure and uncertain, in order to make the psychologist feel more in control. Because such a person would rather blame you or convince you there is not problem, than admit that this child is a handful who needs more careful professional assessment.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 359821, member: 1991"] I'm back now. You are right to be concerned. Also right to be frustrated with this doctor who seems to want to play mind games with you, to cover up her own inadequacy and paranoia over you having more tan a faint clue about your own child. If you can, get another opinion, preferably far away from this person. Find a neuropsychologist for an assessment. If you can, get a referral from your local autism association. The problem is, the understanding of autism has changed a lot in recent years, it has broadened (thankfully) which means some kids who previously would have been left without a diagnosis, now have a label that covers them and can be used to get support. And although it shouldn't work that way (get the label before help can be given) unfortunately, too many areas do work that way and the effort to fight them can be just too much, on top of what you're already trying to do with raising a very demanding child. Another problem - girls tend to be atypical. A girl with Pervasive Developmental Disorder (PDD) in some form can sometimes seem more capable, especially in areas usually considered classic autism symptoms. Also, the smarter the child in general, the better they can mask the symptoms. They're not doing it to be deceptive, but because the one thing they want (like so many of us) is to fit in. Someone can be autistic, but still aware they are different and very much wanting to fit in. Rules are important. While some rules are obvious and often written down, these kids observe those around them and in their own minds, analyse events in order to determine what the rules REALLY are. For example, at difficult child 3's school there was a school rule, "Do not hit other people. The punishment is detention." That was written down. But difficult child 3 observed that it didn't always work that way. Kids would hit him at times and those kids would not get into trouble. But often when he hit these kids back, he would get into trouble. He couldn't work out that the other kids knew when the teachers weren't looking. For difficult child 3 with no theory of mind, he believed that what HE saw, so did everyone else including teachers. So if difficult child 3 saw a kid hit him, then he was convinced the teachers must know it too - every thought in his own head was surely there for everyone to see? So to difficult child 3's mind, the rule became, "Do not hit others or you will be put on detention. However, if you hit difficult child 3, that won't be punished." Then difficult child 3 found that when he hit back, he would be put on detention. But other kids would hit and push each other, and not get into trouble. He saw it happen often. So the rule became in his mind, "It's wrong to hit other people, unless that person is difficult child 3. Then it's OK." Also came the rule, "difficult child 3 will be in trouble, no matter what he tries to do. It is because he is difficult child 3." We had similar problems with difficult child 1 - he believed he was a bad person because he was made tat way. He was always getting into trouble for his inability to sit still, so he 'learned' that his fate in life was to be in trouble. It was to his mind because he simply was a bad person. It takes a lot of effort and a lot of positive reinforcement, to undo such damage. Keeping a diary, putting it all in writing, is a good way to keep your confidence in what you know about your child. It also helps reinforce it when what is written in the diary includes observations by others, including teachers. Another thing that you probably need to do, to help you in this sort of situation - take along some notes, the questions you want answered and any points you want to make, put them in writing before your appointment. Also take your notebook and pen in with you and make notes. Any doctor or therapist who looks askance at this is someone who doesn't get it. I've only a couple of times had a doctor or similar, get annoyed with me for taking notes. And each time, they turned out to not be good doctors for me, for various reasons. I also sometimes have found a doctor or similar react unfavourably to my technical or medical knowledge. Again, I feel, with hindsight, that they feel threatened by it because they need to feel superior. And frankly, I prefer to work with my doctors and therapists as team players, not as someone gazing adoringly at a specialist on a pedestal. I need to know, I need to be informed, and similarly if I have something to contribute then I will, and any doctor who doesn't like it just has to accept it or find me moving on to consult someone who is not so insecure. I don't big-note myself for having the knowledge I do - if a doctor says to me, "You sound like you've read up on this. Are you a health professional?" I tell them the truth. Plain and simple - I've studied to a certain extent as part of my qualifications. I see no reason to hide my knowledge, or to apologise for it. In the same way, when having to cope with a child like mine, I've learned a lot over the years. And living with it, I recognise autism in its various forms very readily. My kids reckon I see autism under every rock, but I don't believe it's because I'm obsessed with it or have a one-track mind; I think it's because I'm so familiar with it, that I know it so readily when I do encounter it. Of course I don't go up to total strangers and say to them, "I think your child has autism," because I don't know them or where they are on their journey. But if someone asks me, I will venture an opinion if I think it is appropriate to do so. I also emphasise, I am only a parent, I do not have qualifications to make a diagnosis. I have found, in my case, that doctors etc who find my knowledge discomforting also tend to not be a good fit for me in other ways. Most recently, my rheumatologist has fallen into this category. My gastroenterologist also at first seemed discomforted by my knowledge, until he seemed to accept it when I said, "You are the doctor. I have some knowledge form my studies, but your qualifications are more detailed, of course, and also more recent. While it means you won't have to explain things in simple detail, I do want to be kept fully informed so I can understand." The gastroenterologist seemed happy with this. The rheumatologist, however, keeps asking me, "Why do you seem to know so much?" as if he has forgotten (he probably has). Plus he doesn't like complex questions, he likes to give simple answers and when I don't find the answer sufficiently enlightening, he gets testy with me for asking more questions. Also I began to feel he was not telling me stuff I needed to know, and instead dishing out a formulaic approach to treatment which was not in my best interests, so I've asked my GP to find me someone else, especially since the rheumatologist said to me, "Since you don't want to take prednisone, I don't think there's any point you seeming me regularly. Only come back to see me if your symptoms return." Well, the symptoms couldn't return, because they had never gone away! And I still want answers, I still want someone to REALLY keep tabs on my condition and help find out how to treat this - and this guy doesn't seem interested. I don't worship him enough, plus I refused the treatment he wanted (because all my other doctors were horrified at the damage prednisone was doing to their treatment of me). What I'm saying - you need your health professionals to be team players. In the team are all the other health professionals as well as the patient, and the patient's family. While it is correct to listen to the doctor and take their professional advice, it is also important to inform yourself and use your knowledge to help. Clearly if your information is wrong and the doctor tells you, then you accept this and learn from it. My mother in law used to be a nurse. She now has a lot of health problems (old age, too) and still hides her past experience because she says, "doctors don't like it if they find you know the terminology. They don't like it if you're too knowledgeable." But the last few times she's been in hospital, we've deliberately blown her cover and told them - "she's an ex-nurse. Use that information, you might get better results from her. Don't treat her like an idiot, she resents it. But she won't let on she understands, so to a certain extent she deserves it." It's an old attitude, one that these days is misplaced. Or should be. Frankly, it's an attitude that only gets in the way. Also, and tis is my own personal observation, the one branch of the health professions where I've seen the most paranoia and the most instability, is in psychology. Lately I've seen far less of it, most psychologists I've encountered in recent years have been balanced, stable, personally secure. But occasionally I come across one who still seems to have problems, and I find I just can't work with them. I don't know why it's in psychology, mostly. husband said he noticed the same thing when he was studying psychology at uni - he said the lecturers were all nuts, and had a massive collective chip on their shoulders about being disregarded in the health professions. So if this therapist is one such - walk away. Get a referral to someone else who won't waste your time trying to make you feel insecure and uncertain, in order to make the psychologist feel more in control. Because such a person would rather blame you or convince you there is not problem, than admit that this child is a handful who needs more careful professional assessment. Marg [/QUOTE]
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