New and full of questions

iVillage Member
Registered: 03-27-2003
New and full of questions
3
Fri, 02-29-2008 - 9:16am

Hi
I actually visited awhile back when I first suspected that my oldest may have AS. Well after getting the ADHD dx from ped, and then visiting a dev ped, who agreed with the dx and added anxiety, I am back. My son just turned 7yr old. He displays many of the AS traits and I still believe he may have it. I am not sure where to go from here. What Dr's know about AS best? Who are the best to go see? I do home school him so I am not sure that an official dx is even necessary, but I just never know what the future will bring, kwim? My son is currently on concerta and it does help settle him and make him less defiant but we still have some major issues, the most concerning is social skills. And actually when he is medicated the AS pops out more to me. When we went to the dev ped, they had me bring him unmedicated and he was a hyper mess, thats all she saw. She asked the typical "autism" questions and said he was too engaged to be autistic. From what I read aspies can be okay with adults socially but not peers?

Some of the "things" that pop out at me about him are:
He is very sound sensitive, always has been, covers ears and gets real hyper when certain noises are heard.

He is VERY obsessed with his personal area of interest and has been since he was 1yrs old, vehicles. He owns no other kind of toy and if he does it was a gift and just collects dust. He has NEVER gone down any other isle in a toy dept than the hotwheel/car isle. He has when I do, but does not give it anytime of day. When he buys his toys, looks for books at library or picks movies, always vehicle related. Oh and in schooling excells if the topic revolves around, can you guess? Vehicles, LOL. He wants to only play that with friends and does not know how to play anything else, thats where alot of social problems come in.

He really does not have any friends, he has people he hangs out with but he does not really talk about any of them or want to invite them over, or vis versa. We do HSing group activities, park day, playgroups ect. He gets left out alot, he is the one the group runs away from. He will try to play the games the others play(good guy, bad guy ect) and then he ends up hurting someone. He only wants to talk about, you guessed it CARS. The other kids get bored with it and walk away. This part really makes me sad and I want to find resources to help him get better social skills, any ideas?

Routine with him, he is a bit flexable but VERY into the clock. "It is time for lunch", if I give him a time limit on something he sticks to it by the clock. He is very into counting. He counts the number of "Chevy'S" in a magazine. He counts how many exits we have to go when driving on the highway.

I could go on but these are the main "symptoms" I see. What do you all think? Should I seek out the formal diagnosis. What are some great resources that can help me help him, especially in social sit?

Any help is greatly appreciated!

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iVillage Member
Registered: 03-27-2003
Mon, 03-03-2008 - 9:30pm
Thanks Drea. I really have no doubt that Brenden has AS. I am like you and want to explain to him about why he is who he is, have done so already with his ADHD. I think we will persue another Dr, getting new ins in June so will wait until then. I know there is no meds or cure for him but I think it will help as far as his learning and explaining.

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iVillage Member
Registered: 02-28-2008
Mon, 03-03-2008 - 4:55pm

I'm no dev ped, but it certainly sounds like AS.

Is a dx important? It depends. For me, it pointed me in the right direction for research. I felt less alone. I found support for some of the things I was doing and ideas for things I hadn't thought of. Eventually, I plan on telling my DS what his dx is, believing that knowing about himself will help him cope with his symptoms.

Sorry to be replying so late, but I'm new to the board myself and have been working thru all the posts slowly.

I hope you find support here.

Drea

Andrea, mom to

Graham
Miles
Anson
iVillage Member
Registered: 04-07-2003
Fri, 02-29-2008 - 12:21pm

My kids's symptoms are not so obvious all the time, either, which is probably what took us so long to get a proper diagnosis (we got diagnosis last year when kids were 8 & 12yo). What was most helpful to us was when I finally wrote down a multi-page list of examples of symptoms and behaviors (like you did in your post) which I gave to the doctor. That's when they finally started to believe something was going on.

Initially our pediatrician didn't believe my kids had any problems (until I gave her the list of symptoms/behaviors), a psychologist who allegedly deals with autism told me my kids didn't have autism, and a neurologist told me my kids didn't have autism. It wasn't until my kids had very thorough testing from a team of doctors (psychologist, neuropsychologist, speech/language, and someone else) at our local Children's Hospital that we finally got a proper diagnosis.

One thing we were told after diagnosis was that it's less important WHAT diagnosis you get but that the diagnosis you get matches the symptoms you see in your child. Absolutely trust your mommy instinct and pursue it until you get a diagnosis you think matches your child.

I really believe that the long list of symptoms/behaviors I made was the most useful thing for ALL of the doctors. A diagnosis is made through testing, observation, and the info you provide to the doctors. If the doctors don't see the behaviors in your child during testing, then the info they get from you will be even more critical.

You could try sending the list of behaviors to the developmental pediatrician along with a note explaining why you think there may be more going on than what the doctor saw at the appointment, or you could try another doc altogether (neuropsychologist, neurologist, etc).

I agree that having the diagnosis is helpful "just in case," and it's also just been nice for my own peace of mind to know that I'm not crazy or a bad parent.

Best wishes.