Well, this is new- Asperger's Diagnosis

[JTsMom]

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 . 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.

[DrSally]

Lori, that's big news. Just wanted to let you know that I've gotta get dinner ready, but will be reading and responding this post tonight...

[Indianamom2]

I'm not super experienced here either, as we are still in the process of getting a diagnosis, but I will say that a lot of what you mention socially is how I would describe DD (she isn't super hyperactive though, although she has the ADHD label). She also has SPD and GAD along with what is now a very mild articulation problem (can't say "r") but was once quite severe expressive language delay.

We are having trouble trying to nail down the proper diagnosis. I go back and forth as to whether I think she may be on the very mild end of the Asperger spectrum (definitely not Autism) or possibly PPD-NOS. Sometimes I think, nope, it doesn't fit....then I'm not so sure. If she does, it's very very mild and subtle, which sounds like your son might be as well.

I don't think I've probably helped much at all, but I wanted you to know that you're not alone. It's frustrating to try so hard to get the help you need, but not know exactly what you're trying to fix in the first place.

[MamaKath]

Big news! Glad to hear that you got confirmation on some of the concerns and some practical approaches (like meds for upcoming medical/anxiety situations). It sounds frustrating to try to digest all the info, especially as you are feeling like some of it doesn't fit.

Okay, another mom's take on it. He sounds like a kid with some pieces that fit pdd-nos (language delay especially) and some that fit Aspergers (repetitive language to me always seems like a social coping skill in dc, strong interest in phones now angry birds). It sounds most of all like ADHD. Can you treat the ADHD and then reassess? Many of the things you see in him may adjust as he is treated .

Also things may change quite a bit over the next few years. As a teacher, I have seen many kids come in with muddy dx in K or 1. As they get older and hormones start kicking in, some things may become more pronounced while others fade into the distance. Tics become more noticeable, some kids develop problems with speech, the social differences become more pronounced. A little kid who was "clearly only adhd" becomes a tween with adhd, aspergers, and anxiety. I have also seen families deal with getting just an autism dx when they feel it should be pdd-nos or aspergers because of the changes in the upcoming DSM-V (release date May 2013) lumping them all together.

Have you read Kids in the Spectrum Mix or The Mislabeled Child? I have found both helpful. I would also try to look into the DSM-V changes to see how either of those dx's might be affected and how that might impact insurance care as you approach your other medical professionals to discuss how this does/doesn't fit.

[DrSally]

Hmm. I see your uncertainty, which has good cause! I guess if you agree with her recommendations, I'd go with those and see what plays out. For instance, I wonder what things will look like once he's on a helpful med regimine for the ADHD. Will he be able to make friends more readily when the ADHD sx are more under control? Very good news about the cog test results!

[JTsMom]

I'm not super experienced here either, as we are still in the process of getting a diagnosis, but I will say that a lot of what you mention socially is how I would describe DD (she isn't super hyperactive though, although she has the ADHD label). She also has SPD and GAD along with what is now a very mild articulation problem (can't say "r") but was once quite severe expressive language delay.

We are having trouble trying to nail down the proper diagnosis. I go back and forth as to whether I think she may be on the very mild end of the Asperger spectrum (definitely not Autism) or possibly PPD-NOS. Sometimes I think, nope, it doesn't fit....then I'm not so sure. If she does, it's very very mild and subtle, which sounds like your son might be as well.

I don't think I've probably helped much at all, but I wanted you to know that you're not alone. It's frustrating to try so hard to get the help you need, but not know exactly what you're trying to fix in the first place.

Thank you. I appreciate the support. Good luck to you guys as you go forward.

Can you treat the ADHD and then reassess? Many of the things you see in him may adjust as he is treated .

Hmm. I see your uncertainty, which has good cause! I guess if you agree with her recommendations, I'd go with those and see what plays out. For instance, I wonder what things will look like once he's on a helpful med regimine for the ADHD. Will he be able to make friends more readily when the ADHD sx are more under control? Very good news about the cog test results!

After listening to you guys, and an IRL friend whose son has AS, this seems like the way to go. As much as we all want "the" answer, and we want it now, I'm learning you have to be patient with these things. When she first said it, I was so surprised, but writing it all out a couple of times, I can see it as a possibility a little more.

Have you read Kids in the Spectrum Mix or The Mislabeled Child? I have found both helpful. I would also try to look into the DSM-V changes to see how either of those dx's might be affected and how that might impact insurance care as you approach your other medical professionals to discuss how this does/doesn't fit.

Putting them on my "to read" list right now. Thanks for the recs! I hadn't even thought about the insurance/DSM-V issue- good point!


Thank you all for the support. I don't know what I would have done over the years without you guys. I don't post on the rest of the board as often these days, but as I was telling someone the other day (LarsMal), I need this section! The neuropsych commented several times that I really knew my stuff, and that she thought we were going to get really good results b/c of that, and I immediately thought of the BBB b/c you all have taught me most of what I do know. Brittone2 told me early on to keep journals, and what sorts of things to report, and the neuropsych mentioned how helpful that information was several times. You all have helped me more than you know!

[JTsMom]

Sally, from a diagnostic standpoint, what do you think about the resolved language delay? Do you think he should still qualify for this diagnosis since it is resolved?


Also, for everyone, I mentioned that I'd heard that treating ADHD can sometimes increase anxiety, and the neuropsych said to be sure to ask about Strattera b/c she thought that was often one they chose when a patient has both issues. Any thoughts on that?

[egoldber]

Lori,

The diagnosis process can be such a long and evolving one.

I am impressed that the psychologist told you that his issues were beyond her. I think a lot of people would muddle along trying to help vs. admitting that they need other help than what they can give.

Also, for everyone, I mentioned that I'd heard that treating ADHD can sometimes increase anxiety, and the neuropsych said to be sure to ask about Strattera b/c she thought that was often one they chose when a patient has both issues. Any thoughts on that?

The stimulant meds may increase anxiety, so they can be problematic for anxious kids. But it isn't a sure thing and the only way to know is to try.

[JTsMom]

Lori,


I am impressed that the psychologist told you that his issues were beyond her. I think a lot of people would muddle along trying to help vs. admitting that they need other help than what they can give.

Thanks Beth. I really hadn't thought of it that way, but that is a good point. I was so busy being annoyed by the 3 visits that it hadn't occurred to me that it could have been much more drawn out.

[JustMe]

Wow, that would be quite the news to get! I don't know, as someone who works in a related field, I would say its really hard to know. I mean, yes in some ways it fits and in some ways it does not seem to fit.

I know it is hard (btdt with a different diagnosis), but I do think the advice about taking her recommendations, continuing to monitor, seeing what improves vs what shows less improvement is probably the best bet.

I do wonder about the idea of focusing on reducing anxiety and seeing what is left.