I always tried to keep in mind that it was considerably more frustrating for my kids as at least I could communicate to other people exactly how horrible I was feeling, ask for what I wanted, etc., but keeping that in mind isn’t always easy to do when you’re in the midst of yet another meltdown. I hope that things get better for all of you soon, and if you ever need someone to vent to please don’t hesitate to contact me.

A word of encouragement. New studies have shown that up to 25% of children withan ASD diagnosis, lose their diagnosis and have a chance at a normal outcome:

http://www.ncbi.nlm.nih.gov/pubmed/19009353?

Your brother seems to have all the attributes asociated with recovery, a diagnosis of PDD/NOS and high intelligence. My own daughter was diangosed with PDD/NOS, was highly intelligent an lost her diagnosis by the 4th grade and has had a normal outcome graduating with a (Magna Cum Laude) dgree, lives on her own, has a good job and a boyfriend and a large circle of friends.

She also had an older sister who loved her very much as a toddler and accepted her as she was. Your younger brother seems to have the gift of an understanding older sibling.

Good luck to you.

His hyperlexia is what is getting in the way of educational services more than anything else I think. As far as they were concerned at his screening he knows everything he needs for kindergarten. Never mind that he can’t manage going to the bathroom or respond to his name on a consistent basis. Apparently those skills aren’t needed for kindergarten?

If he had presented as nonverbal at the screening I’m sure he would be receiving services right now. I know other children who have received services solely because they live in a bilingual household. It was that he presented as a “quirky” kid who can read and count to 50 that he wasn’t flagged for preschool services and directly referred for the case study.

I’ve known children who had the PDD-NOS diagnosis and also did not get any or many services, and needed them—if he had an autism diagnosis would it be different?

It’s all BS though. Disease is disease- regardless of if it is brain based or not. Today I spent half an hour getting kicked and hit while my just turned 4 ASD brother melted down over cardboard letters. At one point he was standing on the kitchen table with scissors, screaming for me to cut out another letter T. I ended up sitting on the kitchen floor with him, trying to respect his personal space while making sure he wasn’t going to hurt himself or his younger brother. If that’s not an issue worthy of insurance coverage I don’t know what is.

He has yet to receive any services beyond his diagnostic evaluation, medical or educational, because it’s not a diagnosis covered by his insurance policy and he was not considered to have any deficit areas at his preschool screening (he has his case study, which they did not want to provide, next week). Personally I think they’re all nuts to think a kid can have a PDD-NOS diagnosis and not qualify for services.