As you may have heard, the American Psychiatric Association has proposed sweeping changes to the diagnostic criteria for autism spectrum disorders (ASD). As a result of these changes, it is estimated that 45-80% of those previously diagnosed with an ASD will no longer qualify for that diagnosis. I understand that there may be a new substitute diagnosis referred to as "social communication disorder", which may be applied to those who no longer qualify as having an ASD.
There are so many Big Issues that I don't feel qualified to weigh in on here. Will this lead to a more or less just allocation of resources? What about the issue of identity? After all, "asperger's" is more than just a label; there are huge swaths of people who identify as "asperger's." You can switch up a diagnostic manual, but you can't just take away a sense of identity from people. Will those with asperger's coalesce around the new label ("social communication disorder")? How will these changes affect my son? These are fascinating questions. I don't have answers.
I'm writing in reaction to a post I read by another blogger, and I'm just writing to put my anecdotal experience out there. Writes another blogger whom I admire and respect (emphasis added by me):
I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets. If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed. If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed.
With all due respect, I wouldn't say that this is universally accepted. May I direct you to Exhibits A, B and C. Not every child benefits from intensive ABA. The agency we used at one point told us Bradley doesn't need the services they were providing. They set up goals for him, recorded his progress in a binder and it soon became obvious he wasn't enough developmentally impaired to benefit from the program. He maxed out very quickly, meaning he met all the goals they established. In hindsight, this was a colossal waste of resources when you consider the cost of ABA and the children in other communities who are much needier and who don't have access.
You may counter that my family is in the minority because I am in Massachusetts where services are abundant. True, but autism advocates lobby national companies to add an autism benefit. If a national autism benefit were added, families like mine represent potential claims experience - a substantial liability with respect to which the benefit of coverage is uncertain. The new definition of autism represents a way to manage that liability and tie it more closely to a population that is more likely to benefit from the services. Managing that liability may, in turn, result in increased coverage. For this reason, my at-first-blush reaction is that the revised definition will be beneficial.