My amazing kids

There was an interesting article in The New York Times recently (published 1/19/12) about autism.  According to the article, the definition of autism is being modified, which would mean some would not meet the criteria for the diagnosis.

<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.

The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply.

The results of the new analysis are preliminary, but they offer the most drastic estimate of how tightening the criteria for autism could affect the rate of diagnosis. For years, many experts have privately contended that the vagueness of the current criteria for autism and related disorders like Asperger syndrome was contributing to the increase in the rate of diagnoses — which has ballooned to one child in 100, according to some estimates.

The psychiatrists’ association is wrestling with one of the most agonizing questions in mental health — where to draw the line between unusual and abnormal — and its decisions are sure to be wrenching for some families. At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.

The proposed changes would probably exclude people with a diagnosis who were higher functioning. “I’m very concerned about the change in diagnosis, because I wonder if my daughter would even qualify,” said Mary Meyer of Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously. “She’s on disability, which is partly based on the Asperger’s; and I’m hoping to get her into supportive housing, which also depends on her diagnosis.”

The new analysis, presented Thursday at a meeting of the Icelandic Medical Association, opens a debate about just how many people the proposed diagnosis would affect.

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”>

This is more interesting and personal to me because exactly a week ago, my thirteen year-old son was diagnosed with Asperger syndrome.  I wonder if he was tested in a year, whether he would meet the criteria.  This comes six months after hearing of my two year-old’s diagnosis of high-functioning autism.  I am still trying to understand the full scope of what she has and what I can do to address it.  I now need to do the same for my son.

Today is interesting and unique because I have a meeting this afternoon to work on my daughter’s IEP (Individual Education Plan) with the district, while a meeting for the same is occurring for my son at his school.  I need to be focused on my daughter’s 12-page IEP for now so I can best advocate for her.  Soon I will need to shift my focus on the specifics of my son’s plan.  It is quite a mental shift to think about what a preschooler needs and then what a teen needs.