Jan 31, 2012 0 Share

A Rose By Any Other Name

Four volumes of the Diagnostics and Statistical Manual in a line.

I have spent the better part of 40-something years trying to figure out where and how exactly I “fit in” in the grand scheme of things. Finally, obviously, miraculously, the questions were answered. Asperger’s syndrome. Of late, I have spent a significant amount of time pondering the implications of the proposed revisions to the “Diagnostics and Statistical Manual of Mental Disorders (DSM).” Because my personal life as both an Aspie and an Autism Mom intertwine so seamlessly with my professional life as a special education teacher, I find myself pondering the implications of the proposed revisions for my students—past and present—as well. I consider myself blessed to have found my niche, professionally speaking. Coming to this place in my life took nearly as long as figuring out that autism makes everything make sense. But … there are more than a handful of young adults in my life, both personally and professionally, with whom I share this label. While the portion of my brain that doesn’t have the RAM space to get too caught up in whether I would fit into the revisionist tale of the autism spectrum (I will) wants to put the whole mess on a shelf and leave it there for the foreseeable future, there’s more to it than that. There has to be, or I cannot do my job as a mom or a teacher.

My daughter and I discussed the issue not too long ago, and she quite gleefully announced, “Yay, so I’m autistic!” This was a light-hearted exchange and she repeated the proclamation to her fellow-spectrumite brother (who grumbled and walked away). Will they fit into the revised criteria? Will they need to fit into the revised criteria? I am less sure of the answer to the latter question than the former. I don’t know what their futures hold, so I can’t say for sure whether they will need services or accommodations in the workplace as adults. The same holds true for many of my students. What I am reasonably sure of is that with the labels “autism” or “Asperger’s syndrome” or “PDD-NOS” come a certain level of understanding both on a personal and societal level. We hear those words and an image forms of what issues may be in play for an individual. True, those images may be stereotypical at times. All things considered, though, I would much rather the young adults in my life get the benefit of the doubt—that in the future, others in their lives know to scratch beneath the surface. Dig just a tad deeper to get past some of the baggage that comes along with autism and get to the beauty that comes along with autism. It is worth searching for.

When I first began teaching self-advocacy skills to adolescents and young adults with autism spectrum disabilities, it was with an implied understanding that these young people were always going to be autistic. Effective self-advocacy necessitates self-awareness. Before the committee that will ultimately make the decisions as to who does and does not qualify as autistic renders its final judgments, I would hope they consider carefully the question of what do we do about those individuals who are learning now who they are, how they are “wired,” what works and what doesn’t and how they can best proceed into the wonderful world of adulthood. If we teachers and parents are doing our jobs to the best of our ability, a sizeable number of those young people may just get to the point where their autism is a source of pride, not shame. They may just get to the point where knowing that autism is what makes them tick is how they are able to keep the clock running on time. I for one have no desire to go back to a time where I am on the outside looking in.

The more time that passes, the more I truly appreciate that “suffering” is not a word I equate with autism anymore, and the only way I made it to that place in my head, and in my heart, was through an accurate and extensive diagnostic process. Ignorance is what breeds suffering. Revising the diagnostic criteria in a manner that excludes those who under optimal circumstances could be considered to be on the “high-functioning” end of things may serve to reduce our numbers, but what then becomes of those left behind? We have spent so much time, energy and love figuring out what works and what doesn’t in the world of autism. As a mom, a teacher, and an Aspie I am grateful to have had that wisdom to draw on. I can only hope that the students in my future will come to me as fully able to learn what it means to be self-aware, to be your own best advocate, as the students I am blessed with today. After all, thanks to the label that answered more questions than I ever dreamed possible, I found the path forward. I hope that those updating the “DSM” realize that the terms “Autism,” “Asperger’s” and “PDD” are more than just a diagnostic label. They are, at the very core, an answer … an identity.