An Ethical Dilemma For Autism Organizations

This year, I have seen the continuation of some troubling trends from autism advocacy groups.  One major group booked me to speak at their conference (for which they will pay me) even as they assembled sessions with autistic panelists who are not getting paid.

Another organization – involved in funding research – talked with me about their proposal to recruit an autistic person to pull together a group of autistic advocates to identify adult needs.  The organization’s staffer (who is not himself autistic) will be paid his regular salary to move the effort along, but the autistic leader of the effort was asked to volunteer her time “until the program gets funded next year.”

I objected to both situations.  Autism advocacy groups are here to support and help autistic people.  When the group’s leadership chooses an autistic person to take the stage and share his or her ideas, I feel they should be paid for doing so.  We know that unemployment is a chronic issue for autistic adults, and it follows that money is tight for many.  Does it not make sense that our advocacy groups would therefore act to relieve that stress, not worsen it?

It’s particularly disturbing to me when I see non-autistic staffers at these organizations collecting salaries while the autistic people they are supposed to benefit are left hanging.  They would not have jobs, if not for us.

I’m not suggesting that every panelist at a conference should be paid thousands of dollars.  But all panelists contribute to the success of the event, and that should be recognized.  Some payment is in order.  In addition, panelists should be offered compensation for the costs of attendance.

As for research organizations . . . when autistic people get involved in shaping research, they should be paid appropriately for their contribution.   If you are a researcher, and you are seeking guidance from autistic people, the ethical rule is simple:  Are you getting paid?  If the answer is yes, then they should be paid too.

Working toward a degree is a form of getting payment, to be clear.  The only circumstance where you might ask for volunteer participation is if you are all volunteers for some greater cause.  For example, you might seek volunteers to spread awareness as part of a church group or mission, or you might encourage fellow volunteers for other nonprofit causes.  

It's beyond the scope of this essay to explore how much pay is fair, but a guide would be the pay ranges of the other people involved in the project and the value of your contribution relative to theirs. 

You might also be willing to volunteer in hopes of getting work in the future, but that's a slippery slope to exploitation.  Only you can be the judge.  

Autistic people have been exploited for too many years.  Be part of the solution, not someone who perpetrates the problem. 

Thoughts anyone?

John Elder Robison

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.