There were reports recently about a new study that found that the impact of new definitions for diagnosing autism might not be as dramatic as previously thought . The new definitions are to be published in the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders and take effect in May 2013. It is expected the narrower definitions will result in fewer diagnoses of autism. Some people have welcomed the move and some have expressed concerns that it will result in fewer services for those that need them.

This is big news for those relying on and working within the systems that identify autism and provide supports and services. The APA’s manual is the diagnostic bible for determining psychiatric disorders and for developmental conditions such as autism. It will be the framework initial diagnostic professionals will be guided by and subsequently effect many if not all the decisions about the individual receiving that diagnosis for the rest of their lives.

However important an individual primary diagnosis is, it is a preliminary guide—an initial label that will evolve with them over time.

Labels by their very nature are used to describe people that have some similarities, characteristics they may share. It doesn’t mean they are the same.
In working over the past 25+ years with colleagues and friends with developmental disabilities, the one overriding truism about the supports and services they might need is that the cookie cutter approach doesn’t work very well. The individualized approach is unquestionably the way to go. No matter what label might have been picked up along the way, while it might provide some broad descriptions about certain challenges the individual might have—mobility problems; communication; social cues; eating—it doesn’t come close to describing the person themselves.

This is true for all of us. It’s not just people with developmental “conditions” that vary greatly from person to person even within what most would consider a tightly defined group. We all do. Each of us brings a unique set of traits and circumstances to group labels they have picked up along the way. Ask my family from the south about their fellow good old boy who became the proverbial black sheep—still loved but definitely not understood.

Seriously though, this is the downside of labels. The APA manual and similar diagnostic tools are absolutely essential for professionals to have an orderly set of criteria to work from. Otherwise they would be struggling to developed strategies to help their patients and those needing non-medical services in the midst of chaos.

But it is equally important to remember that these guides do not describe the individual. We all know the best doctors in the field will tell you their best diagnostic tool is you—the patient. The same is true across the spectrum. For those who have difficulty communicating, or even have no communication, the best approach is still to attempt to determine what would work best for that individual.

As the new autism criteria take effect it may indeed result in a narrower definition of what it means to have a diagnosis of autism. If, at the same time, we continue to work to evolve our systems of supports and services equally for people with all developmental disabilities, so the individual gets the right supports and services for them regardless of the diagnostic label, it shouldn’t matter.

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Disability in Focus