Lurker with a son with ASD and lots of questions.

asc79

Hello,

I rarely post here but have enjoyed reading your posts and have learned a lot.

I have several questions today :-) My son was diagnosed at 2 1/2 with ASD. He is now almost 4 and still non verbal.

1) My son, who is almost 4, has never had sleep issues until recently. He goes to bed between 8 and 8:30 p.m. and falls asleep easily 95% of the time but lately he's been waking up around 2 a.m. or 4 a.m. and it takes him up to two hours to fall back asleep. He stays in bed and usually chatters away (he's non verbal but makes tons of sounds). He curls up on his pillow, tossing and turning. It doesn't seem to be bothering him too much but I am losing valuable sleep because I just sit there watching him on video monitor until he falls back asleep. Any suggestions?

 

2) A little after age 2 1/2 when he was officially diagnosed with autism, we started him at a therapy center with 20 hours of ABA per week. We also had a grad student studying ABA spend about 6 hours at our house doing ABA with him. Progress was decent at first, he picked up on some sign language, etc.

But progress has been limited in the last few months (he's been in ABA therapy for 15 months) or he makes gains but has a hard time maintaining the gains. So his graph looks like mountains with the ups and downs instead of a curve. We had a meeting with the director last Friday who shared her concerns and believes that our son must be dealing with more than just autism. She mentioned silent seizures and bipolar.

(Progress has decreased in the last few months but I should mention that his schedule changed this fall. he gets 15 hours of ABA per week and 15 hours of PPCD at our local elementary school. The PPCD teacher is happy with his progress so far.)

When our son was diagnosed, we had the following testing done: EEG, MRI of the brain, chromosome microarray and metabolic test and everything came back normal.

DS is generally happy, doesn't have a lot of behavioral issues and can easily be redirected if he gets upset about something. 

We are now going to look into a 48hr EEG to see if we detect silent seizures and will meet with the neurologist to discuss what director of therapy center is thinking. I'm confused and don't know what to think. She's acting like she can't help him until we figure out what else might be going on. I agree that it'd be silly to miss out on a medical problem that might be an easy fix but we've done a lot of testing already and all came back normal. 

Do you have suggestions?

I would really appreciate any feedback you might have. I'm not sure where to go from here.

Thank you so much! 

asc79

Auntie,

Thank you so much for your reply.

Our DS was getting 20 hours per week of ABA up until this September. We had to reduce to 15 hours per week of ABA because our insurance doesn't cover and we pay out of pocket and it was just getting to be too much money. In fact, 15 hours is still outrageously expensive but we will stick to this for a while.

In addition to the 15 hours of ABA, he also spends 15 hours per week in the preschool program for children with special needs at our local elementary school. So he gets a total of 30 hours of therapy/education per week.

When I mention the "director", I am referring to the director of the ABA center where he goes. She's the owner and a BCBA.

Thanks for the suggestion on securing his room. It's a very safe place and he can't get out of his room. So no worries there. I think I need to learn to let it go and not sit there watching him on the monitor until he falls back asleep. I just hate knowing he's awake and I have a hard time going to back to sleep. Last night, he had a great night! :-) And so did I.

I am going to request a 48hr EEG and go from there.

Again, thanks so much for taking the time to reply!