DD has a new dx

[Linda on the move]

I've been working on a new neuropsych eval for DD for over a year, and today it's officially over and she has a new dx.

She is going from PDD-NOS to Asperger's. The reasons for the change are that it more clearly communicates her quirkiness. It not that PDD-NOS was incorrect, it's just that aspergers is more specific.

The pattern on DD's IQ tests matches the pattern for aspergers and many of the personality things line up.

She has a few traits that don't line up with asp, but the dr doing the eval feels this way about them:

1. DD had significate speech delays and articulation problems, but she also had chronic fluid and eventually had tubes. Because there is another cause for the speech, it isn't diagnostic for her ASD.

2. DD doesn't desire friends or social interation. The dr thinks this could be related to multiple moves, homeschooling, and a very bad experience DD had when she was 9 (that I don't want to talk about). The dr thinks that the ASD stuff combined with all the factors has left DD a-social. She thinks with more exposure and coaching, DD will gradual come to enjoy interacting with other people a bit more.

3. There's one more thing but I've forgotten what it is.

She also convinced me that if DD's anxiety get bad again (it's OK right now) it's time to try medication.

[Lollybrat]

What does this change mean in practical terms? Does it affect any therapies or services she receives? Does it change her prognosis? Does it affect her sense of identity?

My son's official diagnosis is PDD-NOS and as he has become increasingly more verbal some people (friends, family therapists) ask me if his diagnosis will eventually be changed to Asperger's. I don't think he would qualify for an Asperger's diagnosis because of his significant speech delay and still has a lot of language processing difficulties. He didn't start talking until he was almost 3. I feel like his language issues are closer to autism than Aspergers. But more than that, I really don't understand how a change in diagnosis would benefit him. DS self-identifies with "autism" and that is the term we usually use, regardless of the offical diagnosis.

The lines between autism, PDD-NOS, and Asperger's seem really fuzzy to me and it seems like which diagnosis you get often depends on the personal point of view of the doctor. Has this been your experience too?

[Linda on the move]

Originally Posted by Lollybrat

What does this change mean in practical terms? Does it affect any therapies or services she receives? Does it change her prognosis?

In terms of her accomodation at school, no. She really need the eval for a sense of direction in what would be helpful for her now and how she can prepare for being an adult. Some terms, like "fine motor delays" no longer make sense to me for her. She isn't "delayed" because there's no longer the sense that at some point she'll catch up. The real value of the eval was all the other information, not the dx.

She's never really had a prognosis before. People have always said very general things. This time, however, I was able to get feeback about what are reasonable goals for her for her life and what sort of accomodation she'll need to get there.

Having a sn teen is really different than having a sn child. I'm thinking that having a sn adult will be another big shift.

Does it affect her sense of identity?

she feels like it gives her a better excuse to not like other people.

We are working in it.

I really don't understand how a change in diagnosis would benefit him. DS self-identifies with "autism" and that is the term we usually use, regardless of the offical diagnosis.

I think it makes it easier to communicate with other people about her because it's more specific. Austism is so such a big spectrum. As it is, the books I find most helpful are usually about Asperger's.

The lines between autism, PDD-NOS, and Asperger's seem really fuzzy to me and it seems like which diagnosis you get often depends on the personal point of view of the doctor. Has this been your experience too?

YES!

[BookGoddess]

I hope the new dx will give greater clarity and help from the outside world, but it sounds like you already have a good handle on what her issues are. Parents always do, don't they?

I find lay people, the few that know about the spectrum, are more familiar with Asperger's than PDD-NOS.

[joensally]

Originally Posted by Linda on the move

I've been working on a new neuropsych eval for DD for over a year, and today it's officially over and she has a new dx.

She is going from PDD-NOS to Asperger's. The reasons for the change are that it more clearly communicates her quirkiness. It not that PDD-NOS was incorrect, it's just that aspergers is more specific.

The pattern on DD's IQ tests matches the pattern for aspergers and many of the personality things line up.

She has a few traits that don't line up with asp, but the dr doing the eval feels this way about them:

1. DD had significate speech delays and articulation problems, but she also had chronic fluid and eventually had tubes. Because there is another cause for the speech, it isn't diagnostic for her ASD.

2. DD doesn't desire friends or social interation. The dr thinks this could be related to multiple moves, homeschooling, and a very bad experience DD had when she was 9 (that I don't want to talk about). The dr thinks that the ASD stuff combined with all the factors has left DD a-social. She thinks with more exposure and coaching, DD will gradual come to enjoy interacting with other people a bit more.

3. There's one more thing but I've forgotten what it is.

She also convinced me that if DD's anxiety get bad again (it's OK right now) it's time to try medication.

That's great that you've got a new diagnosis and updated "this point in time" info.

I also want to thank you for the clarity in these posts around PDD-NOS and Asperger's. We've gone in circles with DS because while he does have some mild PDD-like characteristics, he really just doesn't meet the criteria. It's all so very subtle and different in each individual, and I appreciate the snapshot of some of the subtleties with your daughter.

[Linda on the move]

Originally Posted by BookGoddess

I hope the new dx will give greater clarity and help from the outside world, but it sounds like you already have a good handle on what her issues are. Parents always do, don't they?

I've gotten a lot more clarity through the process. The Dr. doing the eval met with me twice just to discuss her and talk about what the different labels mean.

I find lay people, the few that know about the spectrum, are more familiar with Asperger's than PDD-NOS.

It's true. When talking to people about whether a class or activity would work for her, I used to say things like, "She has high-functioning autism, a lot like Aspergers. If this class would work for a child with Aspergers, it will most likely work for her."

Originally Posted by joensally

It's all so very subtle and different in each individual,.

It really is.