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Parents urge autism incident registry funding

I have an autistic son, but we didn't have that diagnosed until he was in kindergarten. Fortunately, however, knowing that things were different with him we were able to enroll him in "Kids on the Move". Because of that intervention program, our son is a much different person today that he probably would have been without the intervention. These programs are extremely valuable for children with specific disorders.

I also have an autistic son. Mine was diagnosed only 2 years ago. He is now 14. He has other problems, and his autism is called Aspergers. We did not even know this existed until the diagnoses. With this level there are few support programs in Utah, and our insurance does not cover any of them. With having few choices and all out of pocket we need legislation to step up. They need to start with ORS. When my son was 9 he had to be institutionalized. He was in the state hospital, and we no longer received any financial assistance for him. In fact not only did the state stop assistance for him, they began charging us for child support. So now we were faced with loss of income, no insurance coverage, and having to pay out of pocket to get him the help he needed.

I do Not have any children that are Autistic, but I have two born with Spina BIfida. I have found that for the most part, the State has been good to work with. They have helped on the wheelchairs and ramps.
The school district and church have also been a source of help. Maybe the difference is that Spina Bifida is very visable. Good luck in your quest to get funding.

I have a Downs son, but I have a grandson who may have Asperger's. I wish I had paid more attention to the work of Dr. Ruth Harrell, PhD. (of Johns Hopkins and Old Dominion Universities) who once told me that her nutritional research could "turn autism off and on". At the time I wasn't interested in autism, being still struggling to help our DS baby.
The NACD (check their website) has done wonders for children with both disabilities.
Incidently, with Dr. Harrell's and the NACD's help, our 20 year old DS son has just been called to serve a part-time service mission, which thrills him to death. He also reads fluently enough to read the Bible. There is help out there--and very little of what we got came from the state.
Parenting a handicapped child is a lift-time commitment and it's not easy.