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Can anyone shed some light? Possible Asperger's in my son

Maude

Member
Hi, everyone. I'm new here, and I just kind of wanted to share my story and see if you guys think. I apologize in advance because this will probably be lengthy and a little disordered, but my thoughts *are* disordered right now.

My son Zeke is 6 1/2 and in 1st grade. He's always been a very intense and sensitive little boy. He's incredibly smart, with an I.Q. of 134 (had to do an I.Q. test for IEP at school). We first sent Zeke to school when he was 3, and from the first day, his teacher approached me with a deer in the headlights expression and told me she saw a lot of red flags for autism. I felt like the wind had been knocked out of me, especially since just the week before our pediatrician suggested we take Zeke to see an occupational therapists, due to him being so scared of loud noises that it was giving him nightmares. Fast-forward a couple months...we finally got in to see an O.T., where she diagnosed him with some sensory processing issues - auditory, visual, proprioception, vestibular - nothing too major, but enough to impact his daily life. We also found out he was about 2 1/2 years behind on fine motor skills, such as pencil grasp. A few months after this, we decided to go ahead and do a screening for autism. Granted we didn't know a lot about high functioning autism, but we didn't really think that was what we were dealing with. BUT his preschool teacher has a daughter on the spectrum, and she also works part time at as an O.T. assistant, so we figured it was best to be safe since she knew more than we did. At the screening, a team of doctors - child psychologist, developmental doctor, O.T., etc. played with Zeke for a couple hours (after collecting paperwork from us), and at the end they said that he DOES NOT have an autism spectrum, but that he does have ADHD.

Social - Zeke is now 6, and we have since been told that his ADHD is severe. But over the past year, my husband and I are seeing more and more signs of Asperger's traits. He wants badly to make friends, but he is very awkward. He doesn't seem to understand personal space, he's way too hyper, tries too hard, gets inches from people's faces often when trying to engage, says awkward things, and he overwhelms people. They try to move to a different area to play away from him, but he's oblivious to this (and to all the behaviors I just shared with you) and follows them. His teacher has commented that he follows one particular girl around at school. And through conversation, it seems to me that one little girl is trying to play tag with him, but he thinks she's running away to be mean, so he may not always understand play? He's gotten in trouble at school for name calling, like when he called a kid in class whose name is Billy "Billy Goat". He didn't understand how this could possibly hurt Billy's feelings. In fact, his teacher has commented he doesn't seem to understand others' feelings. He does well with adults, and when we travel home to see our extended family, I have noticed he will try playing with the youngest child at wherever we are, rather than someone closer to his age. Sometimes he just plays by himself and says it's more "peaceful" that way.

Emotional and Behavior - He has A LOT of meltdowns. This can be caused by not getting his way in something, a change in routine....During these tantrums, he is aggressive. He gets in trouble a lot for arguing and being defiant. He often says mean things to his sister, like, "I wish you weren't in our family. I don't like you, stupid girl."

Misc. - He's set in his routines, and going off the routine can (but not always) spark meltdowns, like the time I picked him up early from kindergarten and he had a meltdown because we weren't exiting from the same door he usually exited from at the end of the day. And I can tell sometimes when he's playing that he has his own rules in his head that on one else is aware of, and deviating from those rules can cause a meltdown - like the time at the doctor's office when he was playing with giant blocks with other kids. I could tell he had a picture in his head of what the finished product should look like, and he was close to a meltdown because other kids were climbing on the blocks or moving them. Also, we had to stop going to church because he would cry and cling to us before Sunday school every Sunday. A month before he turned 6, it finally just got to be too much for us, and we stopped going.

Quirks - One odd thing is that , while he does not have an obsession with any one interest (as far as gathering facts and such, though he does love to gather facts about a wide range of things) he has been obsessed since at least this past August with saying the word "Donut". He inserts the word randomly (and very often) into conversation. I think he's trying to be funny, so would that still count as a restricted interest? He says a lot of off the wall things (think Dr. Seuss). He makes high pitched noises fairly often. His teacher says he does this every day at about 2:30. He doesn't speak monotone all the time, but I have noticed it here and there, and one thing I have noticed about his speaking is that it is very often very loud, and he doesn't seem to notice that it's loud. I try to get him to find his inside voice, and he can't. He does pretty well with eye contact, but his teachers have commented that he doesn't make eye contact as much as he should. And he does stare off into space more, lost in his own, world fairly often. He does things like clap his hands on his sides or clap his hands together or wiggle his fingers or stomp his feet, etc., without realizing he's doing it. He tells me when I pick him up from school often that he looked inside so-and-so's mouth at school or picked them up and squeezed them, odd things like that. He's always thinking when we're out and about that he sees a certain child or teacher from school or even one of his grandparents, and he'll call out to them, and I have to tell him it's not who he thinks it is. Very hard time with facial recognition.

Does this sound like Asperger's? Every teacher he's ever had, and now his pediatrician, says he shows a lot of red flags. We're scheduled to do an evaluation in April, and I'm so afraid they're going to miss it because he does well with adults. It's especially when he gets around a group of kids that it becomes very evident. Will the developmental specialist observe him around other kids? I really need this diagnosis if that's what we're dealing with because without it, our insurance will not cover the ABA therapy.
 
this sounds a lot like aspergers, sounds a lot like me when i was young. ADHD and ADD are both over diagnosed and aspergers and autism both under diagnosed. one of the things that sadly lots of doctors dont realize is that kids with autism disorders doesn't mean that they are are antisocial. lots of people with aspergers want to make friends but they dont have the social development that other kids do so it makes it difficult.

i recommend that you put together a list of quirks that may not translate into a doctors office. have his teacher put together a list of things that he does so that the evaluator can get better information that may not show up in a short evaluation.
 
I've read it's common to get misdiagnosed with ADD/ADHD. To me, it sounds like he's got a pretty good chance of having Asperger's. Does your state or province have some kind of autistic community? They might have tips on who is a good doctor to go see for a proper evaluation.
 
Does your state or province have some kind of autistic community? They might have tips on who is a good doctor to go see for a proper evaluation.

We live in a small town, with the closest bigger city being about 2 hours away, so we don't have an autistic community nearby. One thing I worry about is the fact that Asperger's is no longer a diagnosis. It has melded into Autism Spectrum Disorder as a whole. I have read that this makes it harder to receive a diagnosis for people who are high functioning. I'm so worried that this, combined with the fact that he does well with adults and it will be an adult doing the screening, will keep him from getting the diagnosis we so desperately need in order to get the help we need.
 
Oh, and thank you both so much for taking the time to read my long post and for responding. I like the idea of having Zeke's teacher make a list of quirks and things he does, as well as making a list myself. I wonder if I could somehow video some of the things he does, too, so the doctor can actually see these behaviors. I just wish part of the screening was observing him with other kids. I feel like they miss A LOT by not doing that since that's where so many of the difficulties lie.
 
I liked the idea of both you and his teacher writing down things you see at home at at school respectively. I don't know if this is even allowed but perhaps you could also have his pediatrician put in a few words as well, seeing as he saw signs. This could give your evaluator a bigger picture that he won't get evaualting him one on one. Not just from you but from everyone significant in his life. Cause really, i've always done fine one on one with adults. Its in groups with people my age that the signs start showing. I'm not diagnosed though, but like with your family my family agrees 100% i probably have it.
 
We live in a small town, with the closest bigger city being about 2 hours away, so we don't have an autistic community nearby. One thing I worry about is the fact that Asperger's is no longer a diagnosis. It has melded into Autism Spectrum Disorder as a whole. I have read that this makes it harder to receive a diagnosis for people who are high functioning. I'm so worried that this, combined with the fact that he does well with adults and it will be an adult doing the screening, will keep him from getting the diagnosis we so desperately need in order to get the help we need.

Oh, and thank you both so much for taking the time to read my long post and for responding. I like the idea of having Zeke's teacher make a list of quirks and things he does, as well as making a list myself. I wonder if I could somehow video some of the things he does, too, so the doctor can actually see these behaviors. I just wish part of the screening was observing him with other kids. I feel like they miss A LOT by not doing that since that's where so many of the difficulties lie.
I hadn't heard of that difficulty with the merging. Hrm. That is concerning... I thought nowadays they were either labeled as "high functioning" or put in the "PDD-NOS" category. I should think a video wouldn't hurt. Hopefully if you get a patient doctor, you can show it to them. And if it turns out your son actually isn't on the spectrum (doubtful, methinks), perhaps the combination of the lists and videos will put him spot on for what he has.

My state pretty much does all its autistic stuff around the middle, so it can be a few hour drive for some people looking to connect in person with other families.
 

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