Tuesday, March 18, 2008
What We've Been Waiting For...
Today was a momentous day for the family. After spending the last few years explaining to the world that something was going on with our son, we just weren't sure what, we officially received a diagnosis today. Yup! It's all official-like now... and the answer to all of these years of reading and questioning and wondering?
Well, he's definitely "on the spectrum" somewhere. Anti-climatic, no?
I've been taking Peanut up for these testing sessions, and today was the feedback appointment, where we went over all the results. The testing showed a marked difference in the function of his brain hemispheres, something that is associated with a non-verbal learning disability.
BUT! He's not technically delayed, because while he scored above age-level on the verbal tests (the tests cut off around age 7, and he exceeded many of those), he scored at age level (5 years) for the non-verbal ability tests, not below. However, the 25+ point difference in the two types of IQ tests indicated a right hemisphere dysfunction, which is an indicator of both NVLD and Asperger's Syndrome.
The psychologist explained that many times, the difference in diagnosis between the two is simply the amount of autistic-type symptoms the child displays, things like hand flapping or lack of eye contact or, oh, watching television upside down.
After observing him and reading through all of the earlier reports, the psychologist said that she would be more likely to give him a diagnosis of Asperger's Syndrome than NVLD... but she couldn't. One of the big clinical criteria for a diagnosis of AS is that the child NOT have any speech delay, which Peanut definitely had. Which means he cannot technically have AS, as the clinical guidelines are currently written. She explained that there is already discussion about rewriting those rules specifically to include children with speech delays in the AS diagnosis, but right now? He doesn't have AS.
Where does that leave us? Why, with the ever popular PDD-NOS! For those of you not familiar with all this Autism Spectrum talk, that stands for "Pervasive Developmental Disorder - Not Otherwise Specified." Don't you love it? It's the catch-all diagnosis! It's the diagnosis that sounds really serious, until you hear what it stands for, at which point you say, "Huh?!? What the hell does that mean?"
Actually, it's pretty much what I expected to hear. This is the reason we haven't had a diagnosis until now - because Peanut is atypical in so many ways. He really doesn't fit neatly into any category, so PDD-NOS is probably right where he should be. The psychologist has advised us to treat him as if he had a technical diagnosis of Asperger's Syndrome and/or NVLD, since that is the closest match to his issues and many of the recommendations are the same.
In 6 weeks or less, we will receive an enormously detailed report we can share with the school with everything we should ask for from the school district. The psychologist had some very good ideas for things we should watch out for, things that had not yet occurred to me to worry about. Yay! Math is going to be a bitch for him! More stuff upon which to fret and obsess!
One of the things that was interesting was the fact that although he is left-handed, he actually scored higher on the fine motor skills with his right hand. Both scores were well below average, but you would normally look to his dominant hand to score better. However, because of the right hemisphere dysfunction (which affects his left hand) he scores lower than with his non-dominant hand, which goes a long way to explain why the kid can't/won't write anything but his first name. Hello, OT! I guess we'll be seeing a lot more of you!
So, that's where we are at. It was a lot to take in, but it was all enormously positive. It was also incredibly nice to have the psychologist go out of her way to tell me that she sees a lot of different parenting styles, a lot of different dynamics, and that she was really impressed by Peanut, by his coping abilities and personality, and by how I interact with him. There is nothing more gratifying after years of struggling to do right by your kid to hear that you have, in fact, done a great job.
I need to wrap this up now, as I have more relieved weeping to do before bedtime.
Well, he's definitely "on the spectrum" somewhere. Anti-climatic, no?
I've been taking Peanut up for these testing sessions, and today was the feedback appointment, where we went over all the results. The testing showed a marked difference in the function of his brain hemispheres, something that is associated with a non-verbal learning disability.
BUT! He's not technically delayed, because while he scored above age-level on the verbal tests (the tests cut off around age 7, and he exceeded many of those), he scored at age level (5 years) for the non-verbal ability tests, not below. However, the 25+ point difference in the two types of IQ tests indicated a right hemisphere dysfunction, which is an indicator of both NVLD and Asperger's Syndrome.
The psychologist explained that many times, the difference in diagnosis between the two is simply the amount of autistic-type symptoms the child displays, things like hand flapping or lack of eye contact or, oh, watching television upside down.
After observing him and reading through all of the earlier reports, the psychologist said that she would be more likely to give him a diagnosis of Asperger's Syndrome than NVLD... but she couldn't. One of the big clinical criteria for a diagnosis of AS is that the child NOT have any speech delay, which Peanut definitely had. Which means he cannot technically have AS, as the clinical guidelines are currently written. She explained that there is already discussion about rewriting those rules specifically to include children with speech delays in the AS diagnosis, but right now? He doesn't have AS.
Where does that leave us? Why, with the ever popular PDD-NOS! For those of you not familiar with all this Autism Spectrum talk, that stands for "Pervasive Developmental Disorder - Not Otherwise Specified." Don't you love it? It's the catch-all diagnosis! It's the diagnosis that sounds really serious, until you hear what it stands for, at which point you say, "Huh?!? What the hell does that mean?"
Actually, it's pretty much what I expected to hear. This is the reason we haven't had a diagnosis until now - because Peanut is atypical in so many ways. He really doesn't fit neatly into any category, so PDD-NOS is probably right where he should be. The psychologist has advised us to treat him as if he had a technical diagnosis of Asperger's Syndrome and/or NVLD, since that is the closest match to his issues and many of the recommendations are the same.
In 6 weeks or less, we will receive an enormously detailed report we can share with the school with everything we should ask for from the school district. The psychologist had some very good ideas for things we should watch out for, things that had not yet occurred to me to worry about. Yay! Math is going to be a bitch for him! More stuff upon which to fret and obsess!
One of the things that was interesting was the fact that although he is left-handed, he actually scored higher on the fine motor skills with his right hand. Both scores were well below average, but you would normally look to his dominant hand to score better. However, because of the right hemisphere dysfunction (which affects his left hand) he scores lower than with his non-dominant hand, which goes a long way to explain why the kid can't/won't write anything but his first name. Hello, OT! I guess we'll be seeing a lot more of you!
So, that's where we are at. It was a lot to take in, but it was all enormously positive. It was also incredibly nice to have the psychologist go out of her way to tell me that she sees a lot of different parenting styles, a lot of different dynamics, and that she was really impressed by Peanut, by his coping abilities and personality, and by how I interact with him. There is nothing more gratifying after years of struggling to do right by your kid to hear that you have, in fact, done a great job.
I need to wrap this up now, as I have more relieved weeping to do before bedtime.
Labels: Abby Normal, Asperger's, autism, Peanut
8 Comments:
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Velma is, alas, a pseudonym. I live with my family on Cape Cod, where I attempt to successfully blend in with the normal folk. You'd never guess the darkness that lurks in my heart.
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What to say?
So much to understand, but it sounds as though you've been doing an awfully impressive job - and now you have professionals on your side, advocating for him.
I'm sending you a hug of support.
Sometimes it can open doors to funding pools, intervention and support services.
Sometimes it can just suck.
I'm sitting here trying to think of something way more insightful, comforting, reassuring, positive ... but that's all I've got I'm afraid.
Very best wishes from me and mine to your and yours.
and the other commenter is right label=services
of course we are seriously contemplating going elsewhere, you know some place they actually offer services that are useful.
Who knows...she has a major communication disorder/speech delay that impacts her socially. Like one of the previous commenters said, sometimes it really does help to get a diagnosis. At least for us, it has helped us get all kinds of services. I look at it like this - we're throwing a lot of crap at the wall to see what sticks!