Pragmatics disorder-HELP Pam T!
Moms View Message Board: Parenting Children with Special Needs: Pragmatics disorder-HELP Pam T!
Hi, Pam. It's been a few years!  We just were sent to a 6.5 hour appt with a developmental ped (autism/genetics expert) by my son's district (he is now almost 10- can you believe that?!) and I have to say I am more confused than ever. Basically, we were sent there because the school has no idea how to handle him and has rejected his dx of PDD-NOS, which was given by his psychologist. The reason- among many- was that though is seemed like NVLD- his neuropsych profile (which is sketchy at best because of high anxiety and lack of attention during the testing) comes out in the gifted range nonverbally and in the high av range verbally. His psychiatrist feels it is NVLD because that's how he presents clinically. The dr says it's neither- that it is pragmatic language disorder (because his play is intact)- but there are definite issues in social and communication. He says that this means he is not on the spectrum. So- in trying to read about this, I'm finding that I am more confused than ever. (He does maintain that his dx of Tourette's and OCD are solid and that he has a heavy dose of anxiety which he feels is being ignored and is complicating his profile and causing significant regression at times.....)
Not Pam, but HUH??? Wow, Laura. First of all, no, I can't believe D is almost 10! Wow! Second, how can the school reject a dx that was given by a psycologist? I'm guessing you've ruled out Asperger's. I don't know anything about pragmatic language disorder. Hopefully Pam or someone will see this. Hugs to both of you.
Hmmmm. Not sure what your question is, but I'll just post some random thoughts. First of all, like Cat, he's almost 10???? When did that happen?
Several things sound quite contradictory to me.
1)The dr says it's neither- that it is pragmatic language disorder (because his play is intact)- but there are definite issues in social and communication.
This doesn't make sense for 2 reasons. (1)Play is usually quite impaired in pragmatic disorders, pretend play that is, because these kids have trouble assuming another's viewpoint. (2)If I recall correctly, you had always said that D had great difficulty in pretend play.
2)has rejected his dx of PDD-NOS; definite issues in social and communication. He says that this means he is not on the spectrum.
There are saying he isn't PDD, but what about Asperger's? The hallmark of Asperger's is the whole social interaction piece.
Basically, I think at this point I would chunk the idea of a diagnosis. Regardless of whether D is dx'd as Asperger's, PDD, NVLD, or anything else I would just focus on the symptoms and treat those. If he is having social interaction problems, regardless of the dx, those need to be treated. I'll be honest, it will be difficult to find an SLP who specializes in this. It's unfortunately not something that we get a lot of training in and not even that much experience in, unless it's of special interest. However, I know if D came to me I would be intrigued and be willing to read, call up specialists, and learn what to do. So if you can find someone who is willing to spend a little time then that would be great. I would think D will need individual and group tx that focuses on guided interactions. Brian Shulman at Seton Hall University used to be quite the guru in pragmatic deficits. You might want to google him and pick his brain a little bit. He used to teach at my college (University of South Alabama) before and after I was there, so I don't know him and he never taught me, but pragmatics was his area of expertise and he authored the Test of Pragmatic Skills.
Let me know if you have any other specific questions and I'll help if I can. My email is pamela dot terrell at gmail.com. BTW, I still have the topic of social skills and reading comprehension on my research back burner for when I am a professor. I'm going to do it one of these days--LOL
Hi, Pam and Cat. I know- I can't believe it's almost double digits! YIKES!
Sometimes I'm not so good at asking my question! I guess I'm just really confused! I think you are right, Pam, about tossing the idea of ever having a dx for this. Basically, I feel like the school is trying to play dr and this is just such a "fuzzy" area in terms of dx that I don't think we'll ever get it exactly right. Asperger's is a possibility- he comes out "Likely Asperger's" on scales but when you look at him as a person, it doesn't quite fit for me either- which is what happens when his drs consider it as well. His play is strange- but this dr thinks it's "quirky" at this point. His problem with the play part is that he couldn't say that there was significant impairment- just some- in that area. He does want friends and makes good eye contact.
I think the good news of all of this is that it is bringing to light the language component for him. It has always been something I have worried about (you know that, Pam! I still have those materials you sent me 2 years ago! Thanks!) but never something I could really "prove" if that makes sense. The social stuff has always been obvious, but the language piece hasn't, expecially because in many instances, language can actually be his strength. His school has outright refused to help him in language, so this will be a rude awakening when they get the report (that they paid for). He came out ok with some weaknesses (in semantics and pragmatics- go figure!) on the CASL, but although his scores were low, I was told he still fell within the average range (no matter that it was 35 points discrepant). The SPL pathologist at his school looked at me and told me (in the same meeting) that his social skills were age appropriate. I laughed. I couldn't help it-it was so absurd. She told me that she had observed him on the playground throwing a football and that was age appropriate, so he was age appropriate. I said, "What about when he was climbing on the counters in the back of his classroom? Or spilling marbles all over the floor? Or bolting from his classroom? Or attacking his EA?????" Nope- she held strong. So, I don't think she's going to be our "expert!" LOL.
It is also giving me a push to seek out someone for him privately. I find that that is really the best bet with all of this. It's a nightmare- time and money- but there is a pay off. Our psychologist has given me the name of someone who works with high functioning ASD and Asperger's kids in the past and this is giving me that extra push to give her a call.
The dr is making clear in his report that the school should IGNORE standardized testing in this area, because it will not show his deficits. It will be interesting to see how they take that information. Like I said, though, this is their guy.
I love your research topic, Pam. Keep me posting when it materializes! I'm thinking about the doctorate route as well. I'm just about done with my sixth year degree (a CT thing) in Educational Leadership and a college nearby may be making a deal with the place that I am attending now to accept all 33 credits of the sixth year towards the 60 credit doctorate in instructional leadership. If so, I'm doing it! Right now, I'm a writing and math coach K-4, so it would be right up my alley.
Thanks, Pam. Very helpful to bounce it around. I felt like I was losing my mind! I'm going to check into Brian Shulman, too.....
Laura it is crazy. My son is very similar, the standardized testing just doesn't really show a real picture. The psychiatry team here labeled him "quirky but within normal limits". He just had his speech reduced from the school, because all of his IEP goals are "higher level", well duh, they have always been, but he hasn't mastered any of them ever.
Personally from my point of view, as much as I want a dx, the reality for me is this. He is on "the spectrum" somehow. It isn't clear, but in laymans terms, autism, NVLD, PDD, aspergers, are all very similar, it means socially things aren't quite right, but at different levels. So we try to treat the syptoms, he has trouble with eye contact so we work on that.
Prime example, today during class a glass fell from the teachers desk. Not entirely sure, but anyway, it hit my son on the leg, when I picked him up from school he had blood through his jeans. He said my day wasn't great, i hurt my leg. Upon many questions, I find out that he didn't say anything, the teacher cleaned up the glass and even asked if everyone was okay. My son, pulled a piece of glass out of his leg, set it on "somewhere noone would get hurt, but it would get vacuumed up", and waited to come home and tell me. Well geesh son, there are times you need to speak up. He was hurting and bleeding, but "was too frightened to think" about what to do. This is a pragmatic disorder...but odd, odd odd My son is 9 next month.
Good luck in figuring out what to do next!
Laura, one of the things that's been mentioned several times for Robin is Asperger's. Sometimes I can really see it in him and other times I think, no way. Even his pdoc says he could be, but he'd be hard to dx as it. And he's the pdoc!
Kaye, I can't believe your son did that! Didn't anyone notice the blood on his pants? Wow. And he's almost 9??? Our kids are growing up. Robin's a teenager now.  Seems like he was just my baby.
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