I just wonder why this is not falling into neurologists hands? Why is this considered a mental illness rather than neurological? We need to know a lot more about this disorder before we make hasty classifications.

PLEASE do not forget autistic adults too – because what impacts YOUR kids WILL also impact us autistic adults(like me – aspergers)

Arguably, the DSM is one of the most influential publications in our nation if not the world. Its contents have far-reaching political, social, and individual implications. However, the validity of the DSM is still hotly debated among professionals in many disciplines and has yet to be proven. As parents of children with spectrum diagnoses and authors of Bright Not Broken, we address the problems with the DSM system and its impact on children whose autism is masked by higher IQs. Contrary to popular opinion, and according to numerous autism experts, anywhere from two-thirds to three-quarters of autism’s population may be high functioning. To narrow the diagnosis to exclude the largest percentage of the autism population makes little sense, especially when DSM task force member, Catherine Lord, who developed the current “gold standard” for diagnosing autism, the ADOS, admits that this tool already misses many individuals with high functioning autism.

We readily acknowledge the suffering of the minority population with classic autism. However, as a society we cannot ignore the desperately painful lives that so many high-functioning individuals lead because of social, communication, sensory, and other deficits: lives that Dr. Lorna Wing aptly characterizes as “a hellish nightmare” of broken relationships, failed careers, low self-esteem, isolation, and depression. In short, though their challenges are not as apparent as in those with classic autism, within the high-functioning population are many of our most innovative, gifted thinkers and inventors. Knowingly changing the diagnostic criteria will likely exclude these individuals from services that can free their gifts and talents. This is a crime not only against them, but also against our society and our future.

i am wondering… at first we were told that Aspergers and PDD-NOS were simply going to fall under the autism category. how did it go from that to possibly being left out? if these groups of children and adults lose services it would be a sin.

I will certainly be asking how they plan to better account for this high population of high functioning people on the spectrum. It is mind boggling to me as well.

The problem with the Autism diagnosis (and with several other diagnostic criteria in the DSM IV) is that it is broad enough that it has given professionals too much leeway in making these diagnosis. We spent 3 years proving to professionals that our child wasn’t autistic, and then another 3 years getting the school to realize he carried no autism spectrum diagnosis.

In getting my son tested we heard everything about how this or that was a sign of autism, yet none of the same professionals could sit down and explain how he actually met the diagnostic criteria. The response we got repeatedly was well other kids I know have been diagnosed as autism do similiar things. Heck, we had one doctor who tried to diagnosis him with Asperger’s AFTER he had already been diagnosed by 2 other professionals with MERLD (which by DSM IV criteria requires an Autism Spectrum rule out before the dx can be given). When I pointed out the problem the doctor told me that it was perfectly possible for a child to have both. The DSM IV cares to disagree with that Doc.

Regardless of what the final result is to the definition, if those actually making the diagnosis are not following it and relying more on observation and their feeling on whether the child is autistic or not, I am reluctant to believe that these changes will actually result how people are diagnosed in the trenches.

My child’s final diagnosis Mixed Expressive Receptive Language Disorder, ADHD-HI, and Central Auditory Processing Disorder. his doctor acknoledges he also has high levels of anxiety but so far we are avoiding a GAD dx.

In the end it all comes down to educational accommodations. Without a diagnosis a child can not be classified and get the accommodations they need to succeed. As you will hear in the interview with Dr Frances, the system is not working and many kids with invisible disabilities are falling through the cracks. As much as I tell parents to not dwell on the label I am not naive in knowing its importance. Even and maybe in more need of accommodations are the kids without learning disabilities who are misunderstood and struggling with emotional issues. Let’s not fool ourselves into the significance of the DSMV and how funding will be allocated for our childrens educations. So to be clear, as I always say, treat the symptoms not the diagnosis or label but understand the importance of having one pinned on your child.