Last week, I had a team meeting with staff that I don’t see on a day to day basis. Being independent contractors, we are all rarely in the office. Opportunities to interact and review case studies are welcomed meetings.
At one point, I was discussing a case of one of my younger kiddos, who has Down Syndrome. When I causally said “my Down Syndrome client,” my supervisor corrected me by saying, “You mean your client with Down Syndrome.”
I paused, and then nodded. “Right, sorry. I guess my autism references rubbed off, because I often say ‘autistic adults’ or ‘autistic children,’ because the adults on the spectrum I’ve talked to prefer I say it that way.”
You should have seen the shock that swept across the table. “REALLY?!” they all exclaimed. This was a table of developmental specialists, speech therapists, and occupational therapists who have all had at least one autistic client at some point. This was a newsflash for them.
This is by no means a definite across all autistic adults, because of course I don’t know all of them. What the above exchange does highlight, however, is the continued disconnect between intervention workers/programs and autistic individuals. I myself did not realize how much of a disconnect there was until I started researching ABA and how clients view the approach versus how ABA proponents do (spoiler alert: there is a HUGE disconnect). I then started looking at the different agencies and organizations that focus on autism…no signs of any autistic individuals in the agencies’ upper administration, even as an advisory position.
The organization I contract with is not really focused on autism, so I sort of give its staff and workers the benefit of the doubt. For more obvious ones like Autism Speaks, though, I think it is a warranted criticism. How can you properly support a group if you don’t include them in your organization? I’ve made a similar comparison before, but to me it is like creating the NAACP (National Association for the Advancement of Colored People), and then having an all white board at its head.
Bottom line, I’m glad to have shared that insight with my fellow professionals, but in reality, I really shouldn’t have had to.