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Old 05-15-2013, 08:06 AM   #1
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How would you feel if your child's diagnosis was removed?

It still the same child. You're still dealing with all the same symptoms/issues/whatever, you just no longer know the cause of the symptoms or issues. How would you feel?

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Old 05-15-2013, 09:20 AM   #2
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Re: How would you feel if your child's diagnosis was removed?

I guess it would depend, whats the reason for removing it? Does it open doors to look into different dx?
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Old 05-15-2013, 09:50 AM   #3
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Re: How would you feel if your child's diagnosis was removed?

I see a diagnosis as a word to help my child get the support and therapies he needs. We chose only to share his actual diagnosis with close family and school, only because of all the stigmas and biases attached. It's something he HAS, not IS
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Old 05-15-2013, 10:09 AM   #4
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Re: How would you feel if your child's diagnosis was removed?

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Originally Posted by MrsCrafty View Post
I guess it would depend, whats the reason for removing it? Does it open doors to look into different dx?
Let's say it's removed due to new testing. Old test said child had xyz, new test shows nothing wrong with the child. It may open doors for a new dx, but it will be a long road.

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I see a diagnosis as a word to help my child get the support and therapies he needs. We chose only to share his actual diagnosis with close family and school, only because of all the stigmas and biases attached. It's something he HAS, not IS
Yes but now you cannot get, or will have a harder time getting support and therapies for his needs. I know that the diagnosis does not define the child, but sometimes it does help people understand behavior and react appropriately when dealing with a special needs child. For example, let's say your child has servere autism. To me it would be easier to understand the behavior if you knew what was going on. If they removed the diagnosis, not only do you have a harder time getting the help you need, but people would have a a harder time understanding. I think, anyway. So how would you feel?
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Old 05-15-2013, 10:37 AM   #5
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I would probably be pissed, frankly. I personally find a diagnosis helpful, and to have it removed I'd want a pretty good explanation as to why, and you better start working on what's really going on. I'd feel more upset over a medical diagnosis over something that is more subjective such as autism, language delay, etc, if that makes sense...
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Old 05-15-2013, 10:44 AM   #6
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Re: How would you feel if your child's diagnosis was removed?

Yea I wouldn't be happy then.
Who did the testing, was it someone he is familiar with, someone you trust? If the child is having the same symptoms, why did they re-test?
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Old 05-15-2013, 10:57 AM   #7
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Re: How would you feel if your child's diagnosis was removed?

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I would probably be pissed, frankly. I personally find a diagnosis helpful, and to have it removed I'd want a pretty good explanation as to why, and you better start working on what's really going on. I'd feel more upset over a medical diagnosis over something that is more subjective such as autism, language delay, etc, if that makes sense...
Yup.
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Old 05-15-2013, 11:05 AM   #8
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Re: How would you feel if your child's diagnosis was removed?

Are you guys going to lose a diagnosis?

I think I would be jumping up and down for joy, because I would love for my kid not to have intractable epilepsy and just have epilepsy. I think it's a little different for something like Autism. I would love to no longer have a label of Autism for my child, but if we were still having unresolvable behavior issues, I would definitely look into other diagnosis's. Since we are stuck right smack in the middle of the spectrum that isn't a possibility no matter how hard I might wish it to be. That is just my weird perspective though, and I think my wanting as normal a life as possible for my child plays a lot into that. How many employers are going to want to hire someone who is Autistic with intractable epilepsy?

However, I honestly would be sad that those support services with that diagnosis would be withdrawn and we had to start testing again. Having been through it already, I at least have a the knowledge now about how to go about it, unlike before when we were stumbling around in the dark. I would also get another assessment/second opinion if possible to see if that changes anything.

As far as explaining his behaviors a simple "He's special needs" to strangers harassing you should be sufficient to get them to back off, and for school and family, saying something like, "He was on the Autism scale, but that system is being reorganized and we are getting things reassessed. Hopefully for a more accurate diagnosis." for example, puts the burden on the Dr.'s for changing the system, test and/or their assessments.

We never share his diagnosis with random people IRL. We have had strangers approach us, before our diagnosis, and say, "Oh, he's autistic isn't he?" and we would say, "Oh, hi, do you have an autistic kid?" and they would tell us about their experiences with kids with autism, without us having to say yes or no. Most of the time simply telling the care provider/teacher, what to look for and do to help him, and when to call us is enough.

My friend's son is an 9 on the Autism scale and she is afraid she is going to lose services. She is really dreading having to go back and reassess everything and get a different diagnosis.
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Old 05-15-2013, 11:44 AM   #9
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I am struggling with this right now. DS is currently dx PDD NOS/Aspergers and ADHD. The latter won't change as he's a classic case and is controlled with meds but these new revised criteria for autism are making me mad. If DS can't keep his dx we won't qualify for behavioral services anymore which he desperately needs. And I know someone out there will come say some thing like 'oh well it's just opening the door for a different diagnoses, maybe they were wrong'. Well it's not wrong. And I will be extremely upset if we lose his therapy because the criteria changes and he is high functioning.
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Old 05-15-2013, 11:51 AM   #10
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Originally Posted by mommabritt
I am struggling with this right now. DS is currently dx PDD NOS/Aspergers and ADHD. The latter won't change as he's a classic case and is controlled with meds but these new revised criteria for autism are making me mad. If DS can't keep his dx we won't qualify for behavioral services anymore which he desperately needs. And I know someone out there will come say some thing like 'oh well it's just opening the door for a different diagnoses, maybe they were wrong'. Well it's not wrong. And I will be extremely upset if we lose his therapy because the criteria changes and he is high functioning.
If your child qualifies for Pddnos he almost for sure will qualify under the new criteria. Lots of studies were done and found that only about 10% of cases will be dismissed. But they also found that those 10% fit better under a different category and would still receive services. Will try to find the link (I think it was a Harvard study)

My dd was diagnosed Aspergers by one doc and Pddnos by another. She definitely fits the new criteria for autism and would be high functioning.

What I guess I am saying is that the new criteria is all encompassing and the main points from both Aspergers and Pddnos are melded into the new criteria.
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