I have a question for some of the "older" parents on the board. Has anyone else had a Pervasive Developmental Disorder (PDD) diagnosis (or similar diagnosis on the spectrum) changed as their child got into their teens?
I've had several docs recently discuss the idea of changing difficult child 2's Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis. They say they don't see enough symptoms. However, I've had other docs say the opposite - the difficult child 2's issues are very much a part of his Pervasive Developmental Disorder (PDD). I've also had some suggest dropping it to a secondary diagnosis so that he could get services through mental health that he otherwise couldn't get because of the developmental disability.
For example, I've had docs comment that he doesn't have issues making eye contact. In all honesty, he doesn't. At least not any more. We've worked for years to get him to make eye contact with people. I still have to remind him to look at the person who is talking to him, but he's much better than when he was younger. He'll look at people he knows while he's talking to them...but very seldom will he look at strangers when they speak to him without someone reminding him to look at who is speaking to him.
His social skills are still non-existant. We've made a few improvements like getting him to understand the concept of personal space, although he still struggles with actually respecting another person's space. He seldom keeps friends because "normal" kids get creeped out by him at times. When I watch him with kids his own age, I can see there are HUGE differences in his maturity level vs. other kids. (His maturity level is more along the lines of a 7 or 8 year old's.) That's usually what creeps the other kids out - he's like having someone's little brother pestering them all the time about video games, his favorite anime series, etc. (With no clue whatsoever that the person he's talking to isn't interested.) He can't read things like facial expressions or tone of voice - he just mimicks others.
His language skills are still way, way behind. He comprehends just fine. The problem is that he thinks in pictures. He has trouble converting instructions or conversations into pictures that make sense to him. He has even more trouble taking the pictures he sees and converting them into words (either verbal or written) that someone else can understand.
He still has issues with where his is in time/space. Losing his balance just standing still. Getting irritated with certain fabrics, clothing styles, etc. He doesn't freak over loud noises or bright lights like he used to, but you can tell he's uneasy in large crowds/loud places & he doesn't like going outside unless he's given no other choice.
He still stims - something we've never been able to correct no matter how much therapy he's had. Granted, we've gotten him to make better choices when he stims (tapping his head into a pillow, as opposed to the wall) but he still stims no matter what.
Personally, I still see alot of the Pervasive Developmental Disorder (PDD)-type behaviors that originally got us to a spectrum diagnosis. It worries me that so many doctors have mentioned what they don't see and that maybe he should be re-evaluated. There's a part of me that would love to have Pervasive Developmental Disorder (PDD) taken off the table. However, I know in my heart that we'd be doing difficult child a disservice that way. Seeing the symptoms or not, it is the ONLY diagnosis we've had in the last 10 years that made even the slightest bit of sense. (And the only treatment plans that have had a lasting effect on him.)
Has anyone else had similar suggestions made to them with regard to a difficult child diagnosed on the spectrum? Is it "normal" that as they progress the docs want to reconsider whether or not the original spectrum diagnosis was correct? Could they maybe have misdxed him with Pervasive Developmental Disorder (PDD)? If it's not Pervasive Developmental Disorder (PDD), then why does he have so many of the symptoms?
Ugh. I hate when the docs do this...make me doubt if we're on the right track or not. I don't really care what they call his issues. I don't really care what the label is...but there's a big difference between a developmental disability and mental health issues in terms of treatment plans, options for services, etc. Especially when many of the services he needs are only available through state resources - they make very clear distinctions between a developmental disability and mental health dxes. They are handled by completely separate entities within the local Community Mental Health agencies. So this could potentially be a big issue if they take Pervasive Developmental Disorder (PDD) off the table.
In my humble thinking...if all the therapies and treatments we've tried/used over the years do what they're supposed to do, obviously his Pervasive Developmental Disorder (PDD) issues would become less and less obvious. Isn't that the point of treatment? That doesn't mean he's cured or he was misdiagnosed. It simply means that his treatments have been successful to some extent or another. But there are still issues left to be addressed, so changing his diagnosis to something that doesn't put him on the spectrum just doesn't seem to me to be the smart move.
Maybe I'm just worrying over nothing...but with the court ordered psychiatric evaluation coming up, it does cause me some concern. I worry that if they don't "see" enough of the Pervasive Developmental Disorder (PDD) criteria & take that off the table, he won't be eligible for the services he still needs in order to make progress towards becoming independent. I'm worried that the issues he still has will go untreated and his progress in that regard will stop. From there on out, the docs are just going to focus on his mental health issues...which in my opinion are secondary.
Like I said, maybe I'm just worrying over nothing. It just seems strange that so many docs are suggesting taking Pervasive Developmental Disorder (PDD) off the table when I know in my heart we shouldn't. Not just yet, anyway. He still has too many cognitive issues that need to be addressed before I would feel comfortable disregarding or removing Pervasive Developmental Disorder (PDD) as a consideration, if that makes sense.
I've had several docs recently discuss the idea of changing difficult child 2's Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis. They say they don't see enough symptoms. However, I've had other docs say the opposite - the difficult child 2's issues are very much a part of his Pervasive Developmental Disorder (PDD). I've also had some suggest dropping it to a secondary diagnosis so that he could get services through mental health that he otherwise couldn't get because of the developmental disability.
For example, I've had docs comment that he doesn't have issues making eye contact. In all honesty, he doesn't. At least not any more. We've worked for years to get him to make eye contact with people. I still have to remind him to look at the person who is talking to him, but he's much better than when he was younger. He'll look at people he knows while he's talking to them...but very seldom will he look at strangers when they speak to him without someone reminding him to look at who is speaking to him.
His social skills are still non-existant. We've made a few improvements like getting him to understand the concept of personal space, although he still struggles with actually respecting another person's space. He seldom keeps friends because "normal" kids get creeped out by him at times. When I watch him with kids his own age, I can see there are HUGE differences in his maturity level vs. other kids. (His maturity level is more along the lines of a 7 or 8 year old's.) That's usually what creeps the other kids out - he's like having someone's little brother pestering them all the time about video games, his favorite anime series, etc. (With no clue whatsoever that the person he's talking to isn't interested.) He can't read things like facial expressions or tone of voice - he just mimicks others.
His language skills are still way, way behind. He comprehends just fine. The problem is that he thinks in pictures. He has trouble converting instructions or conversations into pictures that make sense to him. He has even more trouble taking the pictures he sees and converting them into words (either verbal or written) that someone else can understand.
He still has issues with where his is in time/space. Losing his balance just standing still. Getting irritated with certain fabrics, clothing styles, etc. He doesn't freak over loud noises or bright lights like he used to, but you can tell he's uneasy in large crowds/loud places & he doesn't like going outside unless he's given no other choice.
He still stims - something we've never been able to correct no matter how much therapy he's had. Granted, we've gotten him to make better choices when he stims (tapping his head into a pillow, as opposed to the wall) but he still stims no matter what.
Personally, I still see alot of the Pervasive Developmental Disorder (PDD)-type behaviors that originally got us to a spectrum diagnosis. It worries me that so many doctors have mentioned what they don't see and that maybe he should be re-evaluated. There's a part of me that would love to have Pervasive Developmental Disorder (PDD) taken off the table. However, I know in my heart that we'd be doing difficult child a disservice that way. Seeing the symptoms or not, it is the ONLY diagnosis we've had in the last 10 years that made even the slightest bit of sense. (And the only treatment plans that have had a lasting effect on him.)
Has anyone else had similar suggestions made to them with regard to a difficult child diagnosed on the spectrum? Is it "normal" that as they progress the docs want to reconsider whether or not the original spectrum diagnosis was correct? Could they maybe have misdxed him with Pervasive Developmental Disorder (PDD)? If it's not Pervasive Developmental Disorder (PDD), then why does he have so many of the symptoms?
Ugh. I hate when the docs do this...make me doubt if we're on the right track or not. I don't really care what they call his issues. I don't really care what the label is...but there's a big difference between a developmental disability and mental health issues in terms of treatment plans, options for services, etc. Especially when many of the services he needs are only available through state resources - they make very clear distinctions between a developmental disability and mental health dxes. They are handled by completely separate entities within the local Community Mental Health agencies. So this could potentially be a big issue if they take Pervasive Developmental Disorder (PDD) off the table.
In my humble thinking...if all the therapies and treatments we've tried/used over the years do what they're supposed to do, obviously his Pervasive Developmental Disorder (PDD) issues would become less and less obvious. Isn't that the point of treatment? That doesn't mean he's cured or he was misdiagnosed. It simply means that his treatments have been successful to some extent or another. But there are still issues left to be addressed, so changing his diagnosis to something that doesn't put him on the spectrum just doesn't seem to me to be the smart move.
Maybe I'm just worrying over nothing...but with the court ordered psychiatric evaluation coming up, it does cause me some concern. I worry that if they don't "see" enough of the Pervasive Developmental Disorder (PDD) criteria & take that off the table, he won't be eligible for the services he still needs in order to make progress towards becoming independent. I'm worried that the issues he still has will go untreated and his progress in that regard will stop. From there on out, the docs are just going to focus on his mental health issues...which in my opinion are secondary.
Like I said, maybe I'm just worrying over nothing. It just seems strange that so many docs are suggesting taking Pervasive Developmental Disorder (PDD) off the table when I know in my heart we shouldn't. Not just yet, anyway. He still has too many cognitive issues that need to be addressed before I would feel comfortable disregarding or removing Pervasive Developmental Disorder (PDD) as a consideration, if that makes sense.