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Old 03-05-2012, 05:10 PM   #1
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Asperger's-Updated in 21-ASD/anxiety

We were referred today by our pediatrician to the Vanderbilt Children's Behavioral unit with a possible Asperger's diagnosis.

We've always just dealt with/put up with his emotional issues, but the school was concerned about his social delays and urged us to see the doctor. He's almost 6 years old and in kindergarten. Apparently, the Vandy referral will be a full-day testing with multiple specialists. There's a waiting list, so we're waiting until we get a call for an appointment.

Any advice, hugs, BTDT is appreciated. I feel so lost right now.

Here's his symptoms:
-above average academically in an advanced K class
-perfectionist tendencies-impeccable writing, everything needs to line up
-melts down if things don't happen correctly, i.e., he can't get his legos to fit together leads to a full-on tantrum with crying and screaming-these happen pretty much daily
-extremely picky eater-will gag with new foods, doesn't like flavor (eats plain pasta almost daily), won't eat mixed foods (like a sandwich-he has to eat the bread, then the meat, then the cheese)
-has trouble with change/surprise-craves routine
-cannot sit still
-constantly jumping on furniture, even though it's against the rules-it's like he honestly forgets it's not ok-happens daily
-always climbing on things
-has trouble going to sleep without DH laying down with him
-refuses to sleep in his bed-sleeps on one of those little fold-out kid couches on his floor for half the night, then comes to our bed
-cannot get his hands messy-very much a neat freak and always has been
-will not acknowledge people who talk to him (i.e., grandma says hi and he just ignores her-we've gotten on to him for being rude about this a LOT)
-doesn't make much eye contact-his teacher and principal also mentioned this
-will only use a specific, super soft blanket every night
-needs advance notice of anything (we will set a timer for certain things)
-is having trouble keeping his hands to himself at school/inappropriate touching
-picks at his lips and nails to the point of sores/bleeding
-gets intensely focused on tasks and doesn't seem to hear when spoken to
-can't seem to get the right words out-will restart a sentence 5-10 times before finishing it
-slight speech delay-has trouble with enunciation of certain words
-gets frustrated very easily and becomes hard to calm down/console

We don't have many details about how he interacts socially, but his teacher is putting her observations together for us. We have noticed that when we pick him up, he'll be sitting by himself coloring while all the other kids are playing together.

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Old 03-05-2012, 05:12 PM   #2
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Re: Asperger's

Not sure if it's relevant, but he spent the first 8 months of his life in a third world orphanage. The doctor asked a lot about that, but I don't know if it's relevant.
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Old 03-05-2012, 05:42 PM   #3
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Re: Asperger's

Where I am it took 6 months to get into the facility that gave us the diagnosis. We knew that whatever was going on our son was going to need treatment so we started OT right away. It definitely sounds like your son could benefit from OT.

If it is many months until you get in I would ask for an educational diagnosis so he could get an IEP at school and you could begin that process. The school psychologist could do testing for aspergers

Start looking into what your insurance covers. This was a big eye opener for us and our insurance does not cover any treatment for autism other than doctor visits (which we don't need since our son is not on meds).

See if you can find an autism support group in your area, they will be the best resource to help you access whatever it is you are looking for.

He has issues that it sounds like he may need to see a psychologist for. I wouldn't necessarily see one yet but I would start tracking down what your options are.

ABA is another great treatment that you may want to look into. See if your insurance pays for it, where can you access it. I'm saving up for ABA right now but I know kiddos irl that have benefited greatly from it.

Call Vanderbilt and ask what the titles are of the people that will be assessing your son. What we did was go to an office and see the developmental pediatrician for almost 2 hours. Then we went back home to get an MRI and a bunch of lab work. They had us do OT and ST assessments where we would get treatment so I would guess that is what they are doing at your appointment ??? Is this where you would be able to receive outpatient services? Like I said a lot of insurance doesn't cover OT/ST so I would be worried about paying for an OT eval at Vanderbilt and then having to do another initial intake wherever you are going to do outpatient--but finances are a huge decision maker for us so they are always in my mind. OT/ST are $100 a session and its recommended he have 3 a week but even with our decent jobs his dad and I can only afford one of each a week. People with medicaid or other good insurances don't have to worry quite so much so they may having something to talk about other than the cost, lol. Getting back on track....

With his eating problems I wouldn't focus on diet changes right now, unless you could do something simpler like getting rid of caffeine or artificial dyes.

Oh, and buy a tramp for inside the house. It has saved my furniture. There is actually one in the living room and my bedroom. I recommend the newer ones that have screw-in legs, not the older ones that the legs folded under. Wiggle seats, they are a life saver. The one at school is a technical OT one but I bought one at Wal-mart in the exercise section (right by the latest trampoline). They are made to help you build abd core muscles or something but all I know is it helps my son stay seated at dinner without tipping his chair over.

That's probably more than enough for one post
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Old 03-05-2012, 05:45 PM   #4
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Re: Asperger's

I'd make sure the person evaluating has experience with international adoption and cultural issues. If you don't know family history or birth history (and it may not be truthful), its hard to say as it could be genetic, neurological, from substance abuse or even just poor nutrition. Depending on the care at the orphanage, it absolutely could have an impact.
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Old 03-05-2012, 05:45 PM   #5
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Re: Asperger's

What I wasn't prepared for was how little a diagnosis actually did for us. Hopefully things are better there but it was like we had this diagnosis but still no great direction on how to treat it
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Old 03-05-2012, 05:58 PM   #6
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Re: Asperger's

We just bought an indoor trampoline this weekend and it's helping so much already. He hasn't jumped on the couch since we bought it (and that was an every day thing).

My coworker's son has SPD and insurance did not cover OT at Vandy because SPD is not in the DSM-IV. I thought since Asperger's is in there, it would be covered. I guess I need to look into that. We have the extra money in our FSA to cover any initial visits, but not ongoing therapy. Outpatient therapy would also be at Vandy. We're only half an hour away.

There is no school psychiatrist. He goes to a very small private Christian academy. They are going public next year, though.

I do know Vandy has an international adoption clinic. We took both kids there when they first came to the US for medical evaluations. I don't know if the behavioral people are well-versed in adoption issues. I know RAD (reactive attachment disorder) is a possibility, given his past. He SEEMS well-attached to us, but when he's very upset, he will not let us comfort him. So RAD could end up as the dx for all we know. All we know of his history is he was abandoned at the orphanage around (they think) 3 days old. We know NO family history.
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Old 03-05-2012, 06:12 PM   #7
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Quote:
Originally Posted by VinhThiMom
Not sure if it's relevant, but he spent the first 8 months of his life in a third world orphanage. The doctor asked a lot about that, but I don't know if it's relevant.
This is very relevant! The brain stem only grows during the first 5/6 years of life and any trauma in that time period has a negative effect on its growth. It is a proven fact that infants need to develop attachment in order for their brain stems to grow so that they can thrive. I am guessing that this did not happen for your little guy until you came into the picture.

Young children who have experienced a significant amount of trauma, abuse, or neglect will have autism like symptoms, though their symptoms are caused by the lack of growth in their brain stems. Your little guy sounds like he is able to function well, so he is lucky to have found you as his family! Keep it up, mama, and good luck with the evaluation! I think it will answer many of your questions.
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Old 03-05-2012, 06:29 PM   #8
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Re: Asperger's

It's hard for us to blame the orphanage because our daughter spent the same amount of time in the same orphanage with the same caretakers and she's completely typical for her age (4.5). I guess different kids process things differently, though.
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Old 03-05-2012, 06:45 PM   #9
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We have a 9 yr old son with Aspergers. He has/had many of the same issues that your son is experiencing. He was born premature and was diagnosed at age 5. He received 3 yrs of therapy. He has learned to deal with a lot of his issues on his own. But it is a daily battle for him and us. He has 5 other siblings and is homeschooled. I do not think that he could socially make it in a regular school but he is ahead academically . I would be willing to answer any questions you might have. When he was first diagnosed, I did a ton of research..... Not so much now. Although, I do need to start looking at raising a teen Aspie!!
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Old 03-05-2012, 06:51 PM   #10
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Re: Asperger's

Quote:
Originally Posted by Suzi View Post
Where I am it took 6 months to get into the facility that gave us the diagnosis. We knew that whatever was going on our son was going to need treatment so we started OT right away. It definitely sounds like your son could benefit from OT.

If it is many months until you get in I would ask for an educational diagnosis so he could get an IEP at school and you could begin that process. The school psychologist could do testing for aspergers

Start looking into what your insurance covers. This was a big eye opener for us and our insurance does not cover any treatment for autism other than doctor visits (which we don't need since our son is not on meds).

See if you can find an autism support group in your area, they will be the best resource to help you access whatever it is you are looking for.

He has issues that it sounds like he may need to see a psychologist for. I wouldn't necessarily see one yet but I would start tracking down what your options are.

ABA is another great treatment that you may want to look into. See if your insurance pays for it, where can you access it. I'm saving up for ABA right now but I know kiddos irl that have benefited greatly from it.

Call Vanderbilt and ask what the titles are of the people that will be assessing your son. What we did was go to an office and see the developmental pediatrician for almost 2 hours. Then we went back home to get an MRI and a bunch of lab work. They had us do OT and ST assessments where we would get treatment so I would guess that is what they are doing at your appointment ??? Is this where you would be able to receive outpatient services? Like I said a lot of insurance doesn't cover OT/ST so I would be worried about paying for an OT eval at Vanderbilt and then having to do another initial intake wherever you are going to do outpatient--but finances are a huge decision maker for us so they are always in my mind. OT/ST are $100 a session and its recommended he have 3 a week but even with our decent jobs his dad and I can only afford one of each a week. People with medicaid or other good insurances don't have to worry quite so much so they may having something to talk about other than the cost, lol. Getting back on track....

With his eating problems I wouldn't focus on diet changes right now, unless you could do something simpler like getting rid of caffeine or artificial dyes.

Oh, and buy a tramp for inside the house. It has saved my furniture. There is actually one in the living room and my bedroom. I recommend the newer ones that have screw-in legs, not the older ones that the legs folded under. Wiggle seats, they are a life saver. The one at school is a technical OT one but I bought one at Wal-mart in the exercise section (right by the latest trampoline). They are made to help you build abd core muscles or something but all I know is it helps my son stay seated at dinner without tipping his chair over.

That's probably more than enough for one post
I totally agree with Suzi! Great post!

My DD has high-functioning Autism and she is very similar to your son. One thing to remember is that your son likely needs that jumping action and motion and impact. Try to redirect him to acceptable ways to get that input like trampolines, jumping onto a pile of pillows or stuffed animals, or a supervised game where a parent throws him (gently but firmly!) onto a bed.

And for not answering questions or saying "hi" back, we have gotten really good progress with encouraging and prompting my DD to respond and then rewarding her when she does. The rewards don't have to be huge (although edibles like mini chocolate chips or halves of fruit snacks work great!) - they just have to be something that makes your child happy. My DD loves verbal praise so it is pretty easy for us to tell her an enthusiastic "good job saying hi!" with maybe a high-five when she responds. Once she started responding when we prompted her we started to fade the prompts while keeping the positive reinforcement.

Quote:
Originally Posted by Suzi View Post
What I wasn't prepared for was how little a diagnosis actually did for us. Hopefully things are better there but it was like we had this diagnosis but still no great direction on how to treat it
I agree and disagree with Suzi. A diagnosis didn't help that much as in no one gave us a diagnosis and a "here is what to do" treatment check-list, but it was so helpful in getting us started down the path of understanding my DD and figuring out how to help her.

Personally we have found the most useful treatment to be lots of ABA (Applied Behavior Analysis) and OT. Check with your insurance company - more insurance companies all the time are covering ABA for Autism Spectrum Disorders. Mine doesn't, but about 50% of the people in my state do have coverage. And even if your insurance company doesn't cover it, please don't discount your ability to get your DS treatment. There are many scholarships available and many non-profit groups that can help. Like Suzi said, a local support group will be your most valuable resource in finding those connections.

Quote:
Originally Posted by VinhThiMom View Post
I know RAD (reactive attachment disorder) is a possibility, given his past. He SEEMS well-attached to us, but when he's very upset, he will not let us comfort him. So RAD could end up as the dx for all we know. All we know of his history is he was abandoned at the orphanage around (they think) 3 days old. We know NO family history.
I'm sure RAD could be a possibility, but Autism and Aspergers could by itself cause your DS to withdraw from you when very upset. My DD is so loving and attached to us but when she gets really upset she can't handle the stimulation that comes with us trying to cuddle and talk to her. She needs to be left alone and not touched to calm down.

Good luck to you and your family. I know you are sad and overwhelmed now, but a diagnosis and direction can bring so many positives to your family. My DD has made amazing gains in the past year since her diagnosis and I have learned so many ways to help her. My family is in a much better spot now then we were before the diagnosis and I pray you find the same thing.
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