First I'm going to say that I don't have results yet, that will come tomorrow or Thursday. We could have opted to wait 4-6 weeks to get the written report (which we will still get) but we chose to get a phone call when they've made a decision.
I have to say I am surprised at some of the things they said. For instance (and this was a pretty big one for me) when he gets excited and sometimes when he gets upset but more often excited he gets on his knees and bounces up and down and will wave his arms. They called that flailing and made it sound like an Autism trait. Joshua is developmentally delayed and can't do much to indicated his excitement like he can't talk so to me that is something he does to communicate which they did agree with but also called it strange/weird behavior. I happen to disagree with this. He does have sensory issues, the reason we sought the diagnosis in the first place, we sought it before he got his other diagnoses. We decided to go through with it, figured it couldn't hurt and his therapists agreed so we did.
I know that I could just be in denial if he gets diagnosed but I really do disagree especially about the "flapping". They did say they would take into account his developmental delay. His chromosomal disorder one of the symptoms is Autistic tendencies so it's not surprising that he has some sensory issues, I don't think he belongs on the spectrum.
Here's some other things we talked about. There was a Dora Backpack toy where you pressed the smile on the front and it sang or said things. They talked about the fact that he kept pressing it even when it was already going. The fact that he's not pointing but again this goes with his global developmental delay, they did like that he was reaching for things as a form of gesturing. The fact that he doesn't have any friends yet but I kept telling them that he is getting more and more interested in the other kids at school. He is very social though and they did see that. Now I just have to hope I told them everything and wait.
I say follow your instinct. If you don't think he is really autistic, but that it is the traits of the chromosomal disorder coming out to look like autistim then you know your child best. But having a diagnosis in the future school years could work in your favor to get services his chromosomal disorder may not. YKWIM? You don't actually have to tell anyone if they do give him the diagnosis if you don't believe that is it. And it is TOTALLY normal to have a LOT of different feelings when you get that autistism diagnosis.
Let us know what they say.
Thanks. I just don't want him to get the diagnosis if it's not the truth. Who knows what is his disorder and what isn't, yk? I honestly didn't expect to be considering it, we figured we were just ruling it out. Of course now I'm thinking of things I didn't bring up while we're there. Like they didn't ask about playing games, like peekaboo, which he does. He doesn't initiate but he does play and will keep playing. A lot of the things they asked he's just not there yet developmentally, I don't think that should be held against him nor does it mean he is or isn't. We did keep reminding them and they did say they would take into account his delays.
I think to some degree Angela's got a very good point - Autism gets so much coverage and stuff now so the funding is definitely there for services even if it's a slightly off dx.
Natalie & Dan - June 2, 2001
Samma - Nov. 5, 2004
Tommy - Oct. 19, 2007
I don't think the fact that he doesn't have any friends is a consideration. My kids all did the "parallel play" thing well past 2. My almost 3 year old son goes to other kid's houses and plays, but mostly he does his own thing (or follows the "big" kids around). My 6 year old did the same thing.
Good luck with everything.
Joshua's EI just called and said we can appeal the decision if he does get the diagnosis. She already has the name and number of the person to call to get that started. She also said we could talk to the psychologist at our school district this summer when we do our preschool referral. She said she's very knowledgeable and would be helpful.
Are they giving him a diagnosis based on their opinions or are they actually doing the ADOS and actual testing? If this is based on their opinion DEFINITELY go for a 2nd opinion. NEVER base an autism diagnosis on an opinion. And if I were to I would definitely go with the parents over the professionals.
They were not able to do an entire ADOS, they started it but were not able to finish. Basically he isn't able to complete all of it where he is developmentally. They did do a CARS, not sure they finished it. I wasn't in the room, they asked for the parent who Joshua would not run to and expect to be picked up, that is DH. Then they also of course asked us questions, looked all of the forms and other paperwork we sent in so it is a collaboration of all of that. How do we know what is his disorder what could be Autism? I talked to his speech therapist about it today as well and she agreed that some of the things they talked about aren't solely Autism. She called this afternoon but I wasn't able to get to the phone and she said she had to go out to do a home visit and to call in the am so I will know more tomorrow morning.
I just did a search on CARS and it says for children 2 & up, he is 2 but developmentally he is 1. That's another issue I have with this, can you really diagnose a 1 year old with Autism? I tried to tell the evaluator that this morning, that some of the things he is just not developmentally able to do. Why would you even ask if he pretend plays when he's not able to do so many other things that 2 year olds do? I think he acts mostly like a 1 year old. He does not have tantrums or any "behavioral" issues. I really felt like they were digging, looking for something. I know their job is to ask questions but there are so many ways you can look at things especially when he already has a diagnosis, how do you know what is what?