JTsMom
09-18-2012, 04:20 PM
This is going to be a novel. Apologies in advance.
About a month ago, we started the process of doing a second neuropsychology eval for Jason. The neuropsych we saw is working with cardiac patients in a joint program with the cardiology department, so I had hoped we'd gain some new insight, but I really didn't expect the feedback we got today.
She gave Jason an Asperger's diagnosis, re-confirmed his current ADHD combined type dx, said that she feels his SPD is part of the AS, said that she believes he has a medical-specific phobia and some other possible anxiety issues that don't seem to fully fit into a GAD dx, and ruled out OCD.
His cognitive scores were much higher than they had been in the past (I think this was due to her following my suggestions for testing- just little things that would help him focus better). The only low scores were in spatial thinking and non-verbal type stuff- neither of those things is shocking. Fine motor was good, academic scores- get this- were average to ABOVE average :banana:. She recommends starting ADHD meds immediately, seeing a really good psychologist who works primarily with kids with similar diagnoses (although she feels we're already on the right track in general), continuing with homeschooling, and medicating for the medical phobia only before important, stressful appointments.
I agreed with about 90% of what she said, but I'm not feeling really confident about the AS dx. It just doesn't seem to fit. In fact, it was one of the only things I had ruled out b/c it seems like that poor of a fit to me.
Before this eval, we started seeing a psychologist who specializes in CBT. We thought that if we could help with his anxiety, it might help tone down some of his behavioral issues. We wanted to avoid medication for as long as possible b/c of his complex cardiac condition, and this was basically a last ditch effort. I liked the psychologist, but after 3 visits that consisted of us answering questions and her trying to figure Jason out, she basically said that she couldn't do anything to help us until we saw a psychiatrist b/c his issues are so numerous, and so intertwined, she didn't really know how to address them. She felt he had some type of PDD- likely PDD-NOS, which honestly, I think is a closer match than AS. I should add that the neuropsych does feel he's on the mild end of the spectrum, and that he will do very well with the right supports and structure in place, especially ADHD meds.
Honestly, I don't know a ton about Asperger's, mainly b/c I had ruled it out (as had every other pro we'd seen), so while I realize none of you can long-distance diagnose my child, I'm just curious what you all think about some of this, and if it seems to ring true in your mind. Just to be clear, I'm far beyond worrying about him being labeled as anything- I just want to identify the issues as accurately as possible so we can get him the help he needs, so please don't feel like you have to censor yourselves. You won't freak me out. ;) I'm not upset about this diagnosis- I just don't feel confident that it's right.
Ok, here's how she broke it down for me, based on my scribbled notes:
1. Impaired social interaction
Has:
- Non verbal info problems
-Failure to develop peer relationships
Does not have:
-lack of interest
-lack of social/emotional reciprocity
*I agree, to an extent, but think that the first two could largely be attributed to the ADHD. He is very social, loves playing with other kids, but his behavior often gets in the way. He doesn't do well with taking turns in conversations, doesn't always have the best eye contact, but is very empathetic, and although he's not always the most perceptive, can easily id facial expressions, etc. If his brother is upset, he consoles him. If he hurt you, he'll apologize, and these things are not in a "taught" way, he really does get it.
2. Restrictive and repetitive patterns
Has:
-Likes patterns
-Likes routine
Does not have:
-repetitive movements (he does have certain phrases he uses quite a bit, but it's not particularly striking)
-parts of objects
*She based the first two on him lining up the cars he had brought in a certain way, and him wanting to adhere to the pattern we'd set up- crossing testing items off of the list and earning a sticker. In day to day life, he's pretty disorganized, tends to roll with most changes (he'll get upset about certain things, as all kids do, but not to an extreme, imo) He doesn't have a "thing" like a lot of AS kids do. He does have things he gets pretty into for short periods of time, but I don't think they are extreme enough. For example, right now, he loves Angry Birds. He draws AB pictures, plays AB inspired games, has AB shirts, but couldn't tell me about every level, hasn't memorized a ton of info, etc. As a baby, he was obsessed with phones, and that would seem to fit, but nothing has ever matched that obsession.
3. Impaired social relationships
-I also chalk this up tot he ADHD. He wants friends, does really well with younger kids, but is immature and extremely hyper. Seriously, on the ADHD scales, he is off the charts, so we're not talking about a little ADHD. She talked about him not having real friendships, and that is true, but he doesn't get a ton of opportunities to make friends with local kids b/c his behavior is so out of control, it's difficult to do social stuff with him. It's not like he never plays with other kids- he does- but a lot of them are much younger (kids in the neighborhood) or live far away (my friends' kids, family).
4. No significant general language delay
*I also am not sure about this. He did have a language delay as a baby/toddler, but now, language is a strength. He lost words at 1, then did not speak until 2.5, at which time he rapidly moved to complete sentences. He used a lot of echolalia/scripted language though, and still lapses into that on occasion. This was the primary reason I had ruled out AS.
5. No significant cognitive/dev. delay
*New tests look good- the old ones were always below average.
I don't know how much it even matters if this isn't the correct label, and I'm interested to see what his dev. ped. and the psychiatrist have to say, but I really would like to have the correct info if possible. We've talked about ASD with so many different pros, and have been told over and over that he does not fit the criteria, but that if we saw enough doctors, eventually one would give him some type of PDD dx. I would love to hear the thoughts of the experienced moms here.
About a month ago, we started the process of doing a second neuropsychology eval for Jason. The neuropsych we saw is working with cardiac patients in a joint program with the cardiology department, so I had hoped we'd gain some new insight, but I really didn't expect the feedback we got today.
She gave Jason an Asperger's diagnosis, re-confirmed his current ADHD combined type dx, said that she feels his SPD is part of the AS, said that she believes he has a medical-specific phobia and some other possible anxiety issues that don't seem to fully fit into a GAD dx, and ruled out OCD.
His cognitive scores were much higher than they had been in the past (I think this was due to her following my suggestions for testing- just little things that would help him focus better). The only low scores were in spatial thinking and non-verbal type stuff- neither of those things is shocking. Fine motor was good, academic scores- get this- were average to ABOVE average :banana:. She recommends starting ADHD meds immediately, seeing a really good psychologist who works primarily with kids with similar diagnoses (although she feels we're already on the right track in general), continuing with homeschooling, and medicating for the medical phobia only before important, stressful appointments.
I agreed with about 90% of what she said, but I'm not feeling really confident about the AS dx. It just doesn't seem to fit. In fact, it was one of the only things I had ruled out b/c it seems like that poor of a fit to me.
Before this eval, we started seeing a psychologist who specializes in CBT. We thought that if we could help with his anxiety, it might help tone down some of his behavioral issues. We wanted to avoid medication for as long as possible b/c of his complex cardiac condition, and this was basically a last ditch effort. I liked the psychologist, but after 3 visits that consisted of us answering questions and her trying to figure Jason out, she basically said that she couldn't do anything to help us until we saw a psychiatrist b/c his issues are so numerous, and so intertwined, she didn't really know how to address them. She felt he had some type of PDD- likely PDD-NOS, which honestly, I think is a closer match than AS. I should add that the neuropsych does feel he's on the mild end of the spectrum, and that he will do very well with the right supports and structure in place, especially ADHD meds.
Honestly, I don't know a ton about Asperger's, mainly b/c I had ruled it out (as had every other pro we'd seen), so while I realize none of you can long-distance diagnose my child, I'm just curious what you all think about some of this, and if it seems to ring true in your mind. Just to be clear, I'm far beyond worrying about him being labeled as anything- I just want to identify the issues as accurately as possible so we can get him the help he needs, so please don't feel like you have to censor yourselves. You won't freak me out. ;) I'm not upset about this diagnosis- I just don't feel confident that it's right.
Ok, here's how she broke it down for me, based on my scribbled notes:
1. Impaired social interaction
Has:
- Non verbal info problems
-Failure to develop peer relationships
Does not have:
-lack of interest
-lack of social/emotional reciprocity
*I agree, to an extent, but think that the first two could largely be attributed to the ADHD. He is very social, loves playing with other kids, but his behavior often gets in the way. He doesn't do well with taking turns in conversations, doesn't always have the best eye contact, but is very empathetic, and although he's not always the most perceptive, can easily id facial expressions, etc. If his brother is upset, he consoles him. If he hurt you, he'll apologize, and these things are not in a "taught" way, he really does get it.
2. Restrictive and repetitive patterns
Has:
-Likes patterns
-Likes routine
Does not have:
-repetitive movements (he does have certain phrases he uses quite a bit, but it's not particularly striking)
-parts of objects
*She based the first two on him lining up the cars he had brought in a certain way, and him wanting to adhere to the pattern we'd set up- crossing testing items off of the list and earning a sticker. In day to day life, he's pretty disorganized, tends to roll with most changes (he'll get upset about certain things, as all kids do, but not to an extreme, imo) He doesn't have a "thing" like a lot of AS kids do. He does have things he gets pretty into for short periods of time, but I don't think they are extreme enough. For example, right now, he loves Angry Birds. He draws AB pictures, plays AB inspired games, has AB shirts, but couldn't tell me about every level, hasn't memorized a ton of info, etc. As a baby, he was obsessed with phones, and that would seem to fit, but nothing has ever matched that obsession.
3. Impaired social relationships
-I also chalk this up tot he ADHD. He wants friends, does really well with younger kids, but is immature and extremely hyper. Seriously, on the ADHD scales, he is off the charts, so we're not talking about a little ADHD. She talked about him not having real friendships, and that is true, but he doesn't get a ton of opportunities to make friends with local kids b/c his behavior is so out of control, it's difficult to do social stuff with him. It's not like he never plays with other kids- he does- but a lot of them are much younger (kids in the neighborhood) or live far away (my friends' kids, family).
4. No significant general language delay
*I also am not sure about this. He did have a language delay as a baby/toddler, but now, language is a strength. He lost words at 1, then did not speak until 2.5, at which time he rapidly moved to complete sentences. He used a lot of echolalia/scripted language though, and still lapses into that on occasion. This was the primary reason I had ruled out AS.
5. No significant cognitive/dev. delay
*New tests look good- the old ones were always below average.
I don't know how much it even matters if this isn't the correct label, and I'm interested to see what his dev. ped. and the psychiatrist have to say, but I really would like to have the correct info if possible. We've talked about ASD with so many different pros, and have been told over and over that he does not fit the criteria, but that if we saw enough doctors, eventually one would give him some type of PDD dx. I would love to hear the thoughts of the experienced moms here.