With Asperger's, Diagnosis Matters (Unless It Doesn't)

Do I Have Asperger’s, Doc?

Maybe once a week in my NYC therapy practice someone asks to meet with me to diagnose whether or not they have Asperger’s. Asperger’s is a mild form of autism characterized by difficulties in social interaction and nonverbal communication.

It’s almost never the case that the diagnosis is sought to meet some formal need. Sure, a diagnosis is needed in order for therapy to be reimbursed by an insurance company and in rare instances, the diagnosis is required for eligibility for certain disability benefits. But that’s hardly ever why the person on the other end of the line wants a diagnosis. With Asperger’s, a diagnosis matters (unless it doesn’t).

Why Can An Asperger’s Diagnosis Matter?

So here I am–a noted proponent of “non-diagnostic therapy”–urging that diagnosis matters. Here’s why: People want to be understood. They want to understand themselves. They want a framework to make sense of themselves. They find comfort in knowing that others feel and, perhaps, struggle the same way they do.

An Asperger’s diagnosis can feel like a breath of fresh air, an aha-now-I-get-it moment of clarity. The experience of living with Asperger’s can be profoundly isolating–the nature of Asperger’s is that it presents as struggles in communications and relationships. On the other side of the diagnosis are dozens of books, websites, support groups and peer-to-peer conversations.

More so than resources and community (while meaningful) is the sense of order the diagnosis brings–a sense of fraternity even independent of a website or support group. When I think about what individuals with Asperger’s tell me in my therapy practice, the experience reminds me of discovering a great new author–someone who thinks or feels similarly to me and yet, describes his or her experience far better than I could. I feel less alone in the world.

With Non-Diagnostic Therapy, You (And Your Therapist) Decide How An Asperger’s Diagnosis Matters

The next logical question is: what could be wrong an Asperger’s diagnosis mattering? Maybe nothing or maybe a lot. Maybe a patient doesn’t want others to think they are known simply because of a label. Perhaps they don’t want their experience to be organized around a word with a meaning imposed by researchers and writers they’ve never met. They may want the freedom to discover their own limits for themselves–to articulate their own understanding of who they are, including their own strengths and struggles.

The thing is that’s the significance of non-diagnostic therapy. What matters is that we–the therapist and patient–get to decide together what sense to make of things. It’s not that diagnosis doesn’t have a place. It does and it’s often helpful–unless it isn’t.