Diagnosis and Identity

Guest Writer: Ben Wahl, MSW, is the program director of Aspiring Youth Program

Nowadays it is quite common to hear the CDC statistic that 1 in 88 children (and 1 in 54 boys) in the US have an Autism Spectrum Disorder. There is much debate about whether there is actually an increase in occurrence or whether we have just gotten better at detection. There is similarly loud debate about the new criteria for ASD in the DSM 5. For the young people I work with, though, the debate is beside the point. What they experience is what matters; and that experience is often isolation, confusion, frustration, anxiety, and depression.

Some of my students are quirky and some are shy. What is underlying for them is the presence of social and communication impairments or restrictive interests. They experience social situations much differently than their peers and they have difficulty adapting to new situations. This affects their ability to connect socially, with learning, and even with their ability to communicate with parents and siblings. Communication is something we take for granted. If you work with kids with ASD and you witness the daily barriers that come with a communication disorder, you don’t take it for granted for long.

Many parents have told me about how the birthday party invitations stopped coming when their child reached 4^th or 5^th grade. In many cases this pain is even exacerbated by teachers who do not have the perspective or empathy to understand these children. Indeed, for many people with Autism, they experience what has been called an ‘unseen disability’. Because children who have Autism often appear physically similar to their peers, they do not always receive the empathy and understanding that is often bestowed on those with more visible disabilities. In fact, these kids are often excluded and even bullied just for being true to their selves and not ‘fitting in’.

All of the discussion of diagnosis rates and criteria misses a key point: community. If there are so many young people on the spectrum, shouldn’t we be finding more opportunities for them to connect? In the new book “Far from the Tree”, Andrew Solomon describes his experience of attending an annual gathering for people who are very short in stature:

“Instead of seeing, primarily, short stature, I saw that one was exceptionally beautiful, that one was unusually short even for a dwarf, that one laughed uproariously and often, that one had an especially intelligent face—and so I began to recognize how generically I had responded to little people until then.”

Similar to the author’s observations, what we have seen in the Aspiring Youth Program is that when young people on the spectrum are given the community and safety of like-minded peers, their comfort level increases. Within a community of peers, these young people can build more identity and are no longer seen as different. As professionals and parents, we have an opportunity to look deeper than diagnosis rates and instead give young people more opportunities to connect to their peers.