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Almost positive DS has Asperger's, how to really find out?

post #1 of 5
Thread Starter 

I'm too exhausted to write out the whole backstory, but the quick version is that 9yo ds has always had what I considered minor issues (anxiety, perfectionism, ocd tendencies, etc) but nothing that interfered with life, really. No delays aside from some speech problems and just now finally realizing he has fine motor problems (school kept saying he would catch up, this year they realize it's a problem and his teacher initiated a sped eval, the meeting is next week). He was homeschooled for kindergarten and 1st grade, public school for the rest, he is in 4th grade. He has been seeing a therapist 2x a month since June to deal with adjusting to his big brother leaving home ( he joined the Marines).


About six weeks ago, he got a cough. It never really went away, and three weeks in and three dr visits later, the dr stated that at that point, he was fine and that it was a "habit cough" and he recommended further evaluation because he felt it was due to stress & anxiety. Until that point, he loved going to school, aside from one episode where he had a massive panic attack one morning, this past August. He does enjoy going, loves his teacher (I do, too!). Anyway, he has a huge physical panic attack....coughing, gagging, making himself dry heave, heavy crying, when he gets up to go to school. My ex husband, during his week, took him to school anyway and the school sent him home one day, kept him in the office for half the day until he calmed down the next day, same for the following day, then he was "normal" last Friday. Now it's my week. He woke up yesterday wanting to go to school but coughing so hard he was gagging and it was constant, so I kept him home. Today, he had the worst "attack" we had ever seen, the crying gagging, true fear, he was frozen in place and couldn't calm down. Once he realized that he could stay home, he got a bit better but cried for about two hours. 


Anyway, during this my ex and I realized that he needed to see a professional ASAP, this is obviously more serious than his therapist can handle. I want to take a whole body approach and have him evaluated by a psychologist, neurologist, and psychiatrist if necessary. I've always thought that he might have a touch of Aspergers, which may sound strange, but I used to work with Autistic, Aspies, and other SN kids so I kind of know my stuff :)  Anyway, I googled and really, most of what I read describes him word for word. But I'm no doctor, and my ex thinks I'm an idiot, so we need an official diagnosis, whatever it may be.


Our local children's hospital, very well known and respected, has a Children's Neurology department where a team will do the eval, so there is lots of communication and they can figure out what is going on. The ex husband, quite frankly, wants a "quick fix" and wants him to see a psychiatrist in our small town, so that he can get an rx for a med that will calm him down immediately so he can go to school. Im not against medication, but I am against it as the first choice. The wait for the children's hospital can be long, we are in the process of doing initial paperwork. Ex wants him to see a local doc asap in the interim. I would like to go to a dr referred by the hospital. But my main concern is getting a real diagnosis. I'm just so skeptical of most psychiatrists, I've had a lot of bad experiences. I don't want to go to one, have them talk to me and the ex for 15 minutes, and then say, "he has anxiety, here's some xanax". With 50/50 legal, the ex couldn't give it to him w/out my consent, so we'd be in court asap. Of course, if it truly does turn out to be *only* anxiety, then we would take it from there, but I would still only use drugs after other options have been exhausted.


So my long winded question is: what type of doctor is qualified to make a diagnosis? What are the evaluations that a "good" psychiatrist would do to determine the problem? I do agree that we can't wait two months for the children's hospital, so it is good to do something in the interim.


Help! Thanks


ETA- bullying at school is not the issue at all, he loved going, has friends, says he wants to go, and the teacher is with them at recess & there are a bunch of proctors at lunch. It was our first thought, even though ds said nothing was wrong, but we have ruled it out after talking to him, his teacher and principal.

post #2 of 5

I understand this isn't exactly what you asked, but given the rather sudden downturn, I'm wondering if you've have considered the possibility of PANDAs. http://intramural.nimh.nih.gov/pdn/web.htm  The gagging and coughing could be a tick. Even if he's always been a bit quirky, it wouldn't be typical for Asperger's to suddenly get so much worse. So, that all said, my suggestion would be to start with the pediatrician. For sure get him on the list for the children's hospital evaluation, you can always cancel it later.


ETA: the link won't seem to paste right but google PANDAS NIH and you'll get it.

Edited by Roar - 12/6/11 at 7:33pm
post #3 of 5
Thread Starter 

Thanks! Actually, I want any advice :) He has seen his regular dr, had an xray, blood work, etc. Everything is fine according to him which is why he recommended we go to a specialist to evaluate him. 

post #4 of 5
Thread Starter 

And that's the think, ds could "just" be quirky. I just want to really find out, not cover up whatever is going on. 

post #5 of 5

My link wasn't working right before, but if you have not already done so I would encourage you to read about PANDAs. It is a clinical diagnosis - not a blood test and it is often missed.


I agree it is best to get a good evaluation and the children's hospital is the way to go for that. You could also ask if he could explain it is a crisis and see if he can get on the cancellation list to be seen sooner. For what it is worth, if you start with a psychiatrist they aren't likely to fork over Xanax for someone his age, but there is a good chance it would be an SSRI like Prozac.


If your son is having sleep disruptions another short term thing to consider might be melatonin or benedryl.


I hope you can find answers soon. It has to be hard to see your son feeling so bad.

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