What About Us Without Us?

by Thomas A. McKean

As a high-functioning person with autism I often hear a lot of “Nothing about us without us.” But does this mean only us? The articulate higher functioning autism us? There are some who believe it does. I happen to disagree.

If you have been diagnosed (and by that I mean actually diagnosed by a qualified, licensed clinician), then yes, you have a say in this because what goes on will directly affect you. But you’re not the only one. It will affect others, too. Those people also have a right to be heard.

“Us” also includes those who cannot speak for themselves. It includes parents and family members who care for them every day and who have a right to speak for them. It includes the teachers who educate kids with autism, the staff who work with severely impacted clients, the clinicians struggling to support patients desperate for help. What happens in the autism community will affect them as well.

And researchers.

And therapists.

And housing providers.

It is important to get these different views. We can’t base everything we do on just a single perspective when so many others will be affected. That’s asking for trouble. It’s in considering these different views that solutions will be found.