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Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests. ABC World News is looking to hear from parents of children in the US whose children have been diagnosed with autism or a related discorder, but under the new guidelines would not be. The most likely population affected are those with a high functioning child with Aspergers. If you would care to comment, please let the producer know where they can reach you and a bit about your views on the proposed changes. Please feel free to forward this alert to friends or followers. The deadline 1/20/2011 at 1:30 p.m. EST. Thanks!
I am very concerned about what will happen to my son. He is high functioning and probably won’t qualify under the new definition, but not high functioning enough to keep a job. He could easily lose his benefits…SSI, medicaid, therapy. Without those services, will he remain high functioning?
I am very concerned with the wording of the DSM-V and the proposed changes. I worry that the new changes would impact a majority of children and leave them without services, insurance and in programs that are not appropriate for them. I fear that these changes are not going to have any positive results for our children. Thus leaving our children underserved and unprepared when they become adults because they did not get the treatments, services, and therapies. I have two children with autism. I think my son would still be considered as having autism but not my daughter and that is what scares me. I plan on calling the DSM-V committee through the American Psychiatric Association and protest their newest proposed changes
It is awful in states like Michigan that is all we have to help our children with Autism not being covered on any insurance.
Working in the schools it is obvious that there are more and more kids being diagnosed on the spectrum each and every day and instead of spending time and energy changing the DSM so that there are less… they need to be spending their time and energy finding the CAUSE and Treatment!
I am very concerned about the changes that are being planned. My daughter would probably not qualify for services under the new definition and that would cause many problems for her at school. Without these services she will not be able to function in the classroom which will prohibit her learning, cause her to have more behavioral issues which not only affect her, but everyone in the classroom and then be given inappropriate discipline that is ineffective. If this happens, I can see many children like my daughter leaving school and not being able to function as adults without education and learned behavior techniques.
Hi! My son Ky’s diagnose is PDD-NOS. What this new criteria will do for him is still unclear.He still is non-verbal & needs all services he is currently getting. Our insurance company only provides us with 30 Speech therapies a calendar as it is-what will this do? Unfortunately, in my opinion’ what this change will do is make people like me take my son back to his Developmental Pediatrician and have her change his diagnose to Autism. Is this really necessary?
Regards,
King Kyle’s Mom & Number 1 advocate
My son has Asperger’s and as it is we have difficulties. Try to find a psychiatrist (the doctors who prescribe the meds that can help our kids) outside of a major city who:
- is in plan and taking new patients
- takes patients under 16
- takes Autistic patients
- takes High Functioning Autistic patients (many don’t know what to do with the kids as diagnosis such as Asperger’s are relatively new to many of them)
Now, try to find a school district equiped to deal with the unique challenges related to a child with Asperger’s, High Functioning Autism, or PDD-NOS. My son was doing great until he entered Middle School then thanks in part to changes in him, changes in the social dynamic of his age group, change to a different school (middle from elementary), and maybe just changes as part of growing older, he started having behavioural issues including school refusal. Even with an IEP, letters from his doctor and therapist, and our doing literally everything we can think of to get him to go to school with partial success I might add and virtually no changes at the school level (he’ fine once he gets there but due to anxiety and behavioral issues he internalizes and then vehemently refuses to go in the mornings – so therefore, they say “he’s fine once he gets here”), I’ve had a truancy complaint filed against me under NJ state law (I have joint cutody with my ex-husband and live with my second husband and my son, so the complaint was filed just against me because I have residential custody) .
I cannot imagine the mess we’d have if he wasn’t classified! Why are they changing it? Because they don’t like the statistics? Or is it because the insurance companies don’t like the costs? Or maybe they feel that families like ours can just fall through the cracks? And, in this economy we can’t afford to fight. I don’t know. It just doesn’t make sense.
I’m at a loss for words my 4 yr old daughter who is diagnosed with autism or asd was just dropped from our state insurance I have no idea what I’m going to do I’m 7 months pregnant and recently stopped working and couldn’t possibly pay for her services out of pocket she needs her therapy as a non verbal child with behavioral problems and still struggling with potty training I use her diagnosis to get pull ups for her and also allows her to get into special needs programs in school. She needs this help and the last 2 years of me fighting tooth and nail for her to get these services and where she needs to be to progress and have a chance at a good education are now ripped from her and my heart breaks to thinly of how amazing her progress has been now to be stopped almost before it even began.