Totally, totally confused.

iVillage Member
Registered: 03-28-2003
Totally, totally confused.
2
Sat, 07-26-2003 - 2:29pm
For the past year my son's principal has been telling me he has Aspergers. As I've explained in other posts, I took him to a psychologist, TEAACH, and another psychologist. The first psychologist formally ruled out Aspergers. TEAACH said there weren't enough red flags to evaluate him. The second psychologist said, upon meeting him for his first interview, no way he was on the spectrum. She did a one year training type program at the Harvard Aspergers clinic. She is a former Prof. from Harvard, etc. Well, now we are getting him tested for learning disabilities by this Harvard person. On day one of testing, she referred us to an Audiologist. He has CAPD. We are trucking along with testing. The school principal has been out of town. Last week she gets back into town and they have a phone conference. After the phone conference, she tells me we need to rule out Aspergers. Now he has to get three more tests! I asked her if she thought this may be a possibility, and she says "No, not really." Then she explains to me that a lot of kids w/AS have CAPD. One of the common side effects of both is a lack of wanting to interact with their peers. My son does this.

Liam will start playing with his friends, but after a while, he will want to play alone. Especially if it is loud or noisy. He can play for hours with a couple of kids, but any more and he needs to go inside. Oh, I forgot. This usually only happens outside. If they come inside, he's fine with that. Also, he doesn't mind playing what they want to play. He is very go with the flow.

Yesterday we had about five kids and three mommies over to swim in the pool. He played hard for one hour, then retreated inside to watch TV. (He likes it a bit loud). I went inside and asked him why he didn't want to play, and he said it was too loud. I didn't 'get it", so I made him go back outside. He grabbed a towel, wrapped it around his head and crawled under a chair. The other kids started laughing at him, and he just cried. I let him go inside at that point. Then the kids all went inside to play. He was over the hurt feelings, and he played just fine.

My friends left, and my husband came home, so I went and got Tony Attwoods book from Barnes and Noble *Aspergers Syndrome* I just finished it. Either I am a total ostrich, or I completely don't know my son at all, or the principal just doesn't know what she is talking about! I could identify with this statement:

"Lack of desire to interact with peers" and "The child does not see themselves as a member of a group and follows their own interest ...on the playground..." Even under the auditory stuff, most of it didn't ring true. I can see this making sense; "...problems focusing on one persons voice while other people are talking... But isn't that the CAPD? He loves to go shopping. Except to Home Depot or Lowe's. Except when they have the classes for kids. He loves that. Otherwise, he'd rather not as they don't have toys. I think that is quite an appropriate response for a six year old!

He has no narrow interests. No repetitive routines, no problems with his speech and language. I take that back, he is a little melodic in speaking. But that runs in my family, so he could have peculiar voice characteristics. No non verbal communication problems, and he isn't clumsy at all. He loves to climb trees and playground equipment.

Could he still have this, am I crazy, or is there a better book?

Sio

iVillage Member
Registered: 11-05-1998
Mon, 07-28-2003 - 12:49pm
Sio-- Why does the principal still say you need to "rule out" Asperger's? It seems to me that you already have, through the meetings/evaluations with THREE different professionals (if I've read your post correctly). Why won't the principal accept their ruling that your child does not have AS, but does have CAPD?

There is no better book on AS than Tony Attwood's (he is THE MAN on AS), and if you, who live with your kid day in and day out don't see him within the pages of that book, I'd say he probably does NOT have AS. Believe me, when I first read it, I was like, "Omigod, this is CHRIS! And this, this sounds just like Chris! And hey, what do you know, this explains why Chris does this and this and that!" It was like Tony Attwood had been hiding out at my house.

Good luck getting a proper diagnosis--and working with the school system. Keep us informed of what's going on.

Elizabeth

mom to Chris, 10, AS (diagnosed at age 6)

iVillage Member
Registered: 03-28-2003
Mon, 07-28-2003 - 7:50pm
Thanks for responding. I was very upset when I wrote that post. I put it on this board because I was hoping you ladies could help me. Obviously a lot of you know so much more about all this then I do. For a good part of last year I kept researching HFA & AS. But mainly I did abstracts and web articles. And read the posts on this board. I've done research and I've even published a couple papers in undergrad. Like conference posters. But still when I read all those articles and abstracts, I felt quite confused. T. Attwoods book brought it down to my level of understanding. It made me realize I have a lot of decisions to make. He wants to stay at his school, and the PhD thinks he's getting a lot more services there. But this whole thing does piss me off. Ok, now I'm just venting. I have a point or two.

First, I talked to the Audiologist, and she said based on the areas he's having problems with, the social isolation is probably due to him being overwhelmed by a lot of people talking and his long lag time is consistent with how long it takes him to process 411. It takes him a very long time under the best circumstances, so she thinks it must be very hard in a classroom full of 20 plus kids. She also said he was more consistent with focusing,processing, and concentration issues. But she's only spent 5 sessions with him, and diagnosing autism isn't her area. However, she does want us to try to get him an IEP for an FM trainer and try some special ear plugs for recess.

Second, my husband and I have agreed we will continue with the evaluation because if he is even just a touch autistic, and there is some way, with that information, we can make things better for him, that's our job as parents. And, it is the only way we can get him out from under the "microscope" he is currently being viewed by the school. Our town is small and very tight knit, so even if we yanked him out of his school, put him in another, it would follow him.

I don't know what the deal is with the principal. I am guessing she isn't convinced because no one has actually assessed him. All three times, he was ruled out in the screening phase. That's what I got from the PhD. I wish I knew more about PDD-NOS. There don't seem to be any books or a lot of articles on that part of the spectrum. But I don't think it's that either.

Right now he is making himself socially isolated, but I'm afraid he will grow out of needing all this quiet time and end up socially inept. That is what happened to my sister. I love her, and she is very happy, but she is socially unsure and uncomfortable. (I think she has CAPD & it was a lot worse when she was his age).

I talked to the mother of a boy who is AS in Liam's gymnastics class today. She said I was doing all the right things. She said he didn't act like he had AS to her, but she's a SAHM ex engineer, not a professional person who assesses autism. She is going to ask a friend of hers whose son has CAPD for any resources in our town. She thinks I need to read up on the laws in NC. I guess principals aren't supposed to tell people their child is autistic. But I'm not going to pursue that because, no matter how upset I am, I am still grateful she got us to look. What ever comes out of this, he has CAPD, and he is struggling. If there is more to it, then it can only be good to know.

Thank you for the Internet hug!

BTW, you ladies are so great. I keep trying to get support and "the conversation" going on the CAPD board. But it is nothing like this board. I'll still try!

Kindness to you !

Sio