Those of us who work in mental health have a responsibility to stay current on the changes to how people are assessed and possibly diagnosed with mental illness. The recent publication of the new DSM-5 (the manual widely accepted as the source for mental illness diagnoses) has undergone some significant changes that affect those of us connected to autism. In fact, this newest version has revised the criteria to be diagnosed with autism. If you’ve read any of my prior blogs you may know my son Avery was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) in 2005 when he was about 21 months old. It was a disorder among the larger umbrella of Pervasive Developmental Disorders and was considered to be on the “autism spectrum”. My family and I have adjusted to the idea of autism being a part of our experience…and our identity.
The new DSM-5 has eliminated PDD-NOS and Asperger’s Disorder as conditions. Wait, what? We are members a larger community who have struggled with, toiled over, grieved about, and continually strive to be emancipated from the stigma of disability. I try to have a strengths-based perspective about Avery’s condition, and we all do our best to support him in areas where he struggles. It's not much different than how my wife, kids, and friends do the same for me as someone who has Type 1 diabetes AND LOVES cheesecake. The next time he has an evaluation, they’ll offer him a different “name” for his challenges. I'm conflicted. We’re used to this name! We take pride in this name! We identify with this name! We’ve overcome with this name! What will the name be, based on the new diagnostic criteria? If I had to guess, I would say Autism Spectrum Disorder-Level 1. This particular diagnosis, I believe, represents those who meet diagnostic criteria but need the least amount of intervention and support. Have you ever been associated with a group of folks given a name meant to disparage, but somehow, over time, you found value in that name? I remember being a kid and hearing people refer to some people as red-headed step children. It communicated a person being out of place, not quite fitting in. Have you ever heard members of historically marginalized groups refer to themselves with the same labels originally meant to be oppressive and stigmatizing? Somehow those labels actually became terms of endearment to some in the group. You know where I’m going with this. What are those labels for you? Which ones have you chosen to reconstruct and redefine? There are some who are happy about how the diagnostic criteria for autism have changed. But for others, like those in my family, faith has helped us redefine and make our own meaning of autism even when others perceive it as negative or insulting. It really brings to mind Maulauna Karenga’s Nguzo Saba, or Seven Principles, of Kwanzaa. Among those principles is kujichagulia (pronounced koo-jee-chag-oo-lia) which in Swahili means self-determination. Its definition is, to define ourselves, name ourselves, create for ourselves, and speak for ourselves. I hope those of us in the autism community continue to show the courage to define ourselves, name ourselves, create for ourselves, and speak for ourselves in ways that communicate we’re beyond any label.
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AuthorI'm Mike. If you have an interest in mental health, family functioning, and disability advocacy, this blog may be of interest to you. Archives
January 2016
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