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. 


Unknown said…
Hi John,

Are these ethical dilemmas? It is too soon to make an accurate assessment without knowing all the facts.

Are we talking about a corporation or a non-profit?

Were these entities asked to compensate the speaker & provide accommodations? If they declined to compensate, etc, was a rationale offered?

If a rationale was offered, did it seem reasonable given the size & resources of the organization?

Were the entities given a chance to address and rectify their practices and they outright refused?

It is important to note that if we’re talking about a non-profit, there exists a mind numbing myriad of rules and regulations that must be followed. Not only federal and state regs too. Expenditures must be approved in accordance with fiscal policy. Funds contributed to the entity may have restrictions on them. Was the expenditure incorporated into the adopted budget for the year, is it free of any conflict of interest, etc.

This does not even touch upon the economics of compensation/speaking fees for presenters.

The goal is to have a variety of autistic voices heard. Without having all the facts available, is a condemnation of an organization as "exploitative" going to increase or decrease the likelihood of achieving that goal? I think organizations would become wary of asking for those voices for fear of being unfairly judged.

Lest anyone be confused, this is NOT to say that autistic speakers shouldn’t be paid. Rather, what I am saying is that each situation must be examined on an individual basis and where there is room for improvement we need to inform, suggest possible solutions, and allow the time necessary for policy & procedural changes.

I can see how it might seem objectionable from an external point of view. My past-life exp. in public accounting gives me a WILDLY different perspective. It could be unintentional oversight, it could be related to financial policies. Don't know though until more questions are asked. Hard to solve issues though when someone feels they're being put on the defensive.

Everyone responds better to positive reinforcement and it may just be a matter of shaping the organization’s behavior. I think it would be self-defeating otherwise.

Best regards,
Denise Lombardi
Anonymous said…
I feel incredibly safe calling these ethical dilemmas, yes.

It severely limits the possibility of participation in the conversations being had *about us*, overwhelmingly by non-autistic people who are *being paid,* when we are not being and therefore can't. (Because we overwhelmingly live in poverty, or have jobs we don't get personal days or vacation days from, and therefore can't afford uncompensated travel.)

I have no problem saying that's an ethical issue. That we're left out of conversations about our well-being simply because we can't afford to participate on the terms offered.

I think it's a different scale of ethical issue when we're talking about majorly well-resourced organizations (and some of the richest ones are indeed non-profits) or corporations as opposed to small, grassroots organizations that are all-volunteer themselves, but it still is one.
Dr. Q said…
Here's my thoughts...I've never encountered anyone soliciting an adult autistic's perspective; Ihave my doctorate, and I was diagnosed with autism four years ago. I have no avenue to help. No disrespect intended, but it seems if I don't write a book about my experiences, no one cares for me to have a voice that could be helpful.
KateGladstone said…
It gets worse than that, Dr. Q! Often, when I hear that a parent or researcher or someone else is writing a book about autism in adults, I contact him or her to ask if autistic adults will be interviewed and quoted. At least 95 times out of 100, I am told (by the person who is writing such material) that he or she does not wish to speak with autistics, but only with the autistics' family members, care-providers, therapists, or other past/present associates (consensual or otherwise) of the person.
KateGladstone said…
Then there are the people who call any spoken or written statement by an autistic (a book, an article, a conversational remark, or anything else) "verbalizing behavior."
Daniel Molina said…
John, I appreciate your objection and frustration. I've not truly had incentives toward presenting unless you consider a discount to the registration fee (yes, I still pay). What I would share and try to do in classroom settings as well, is to include others in the opportunity and identify a co-presenter. Often I will coordinate a meal afterwards and a small token of my appreciation or possibly cover the registration fee, paid out of my own pocket. I absolutely take on the mentor role in helping shape the research and presentation because the opportunity for the co-presenter wasn't necessarily something they sought out to do.
I think if you can reshape opportunities you are provided to bring attention or opportunities to others, more people benefit.
Unknown said…
You have brought up a great point, and one I'm seeing with increasing frequency in the environmental justice movement as well. I head a small nonprofit working in water policy and advocacy. Though our budget is extremely modest, about $11,000/yr, and staffed entirely by volunteers, we endeavor to pay speakers' travel expenses at a minimum, and usually a small honorarium of $50 - 100. (Recently we paid $250 but didn't reimburse for travel within the metro area separately.)

Does this seem like enough?

By the way, we get small federal, state, and philanthropic grants, and I've never seen a situation where speakers fees were disallowed costs.
Fysio said…
Not only those organisations don't pay their autistic staff, they also require from them to hide their autism. In Holland we have or own brand of Autism Speaks, called the NVA, their recruitment ad says: "Are you the parent or the partner of someone with autism, or are you yourself a person with autism and you can keep enough distance from your own problematic, and you can and enjoy working together in a team, etc.". Another organization, SIRE, which was looking for autistic people for their campaign against stigma, turned down people for being "too autistic". The NVA, again, justified not having autistic people on their board because "they have problems with communication". Please mr. Robison, Tell me how not to despair. And I'm not even talking about the total lack of persons of colour in their idea of autism, thus maintaining the diagnostic bias against them. Help.
We are a small non-profit with limited funding at present. We run groups where autistic and non-autiistic communicators co-learn and co-teach on the topic of social language diversity. We are currently running a group with two universities in CT. One university provides interns from the department of communication and the other provides free parking.

Our autistic and developmental assistant are paid for their travel time and assistant time for the group sessions. It has always been that way. If individuals with autism who have completed 2 training sessions would like to help advance our work--they are PAID. Their input is invaluable to us. I agree with John. I think it is far to common to see the differences and difficulties relating to communication with "typical" communicating peers as a one sided 'disabled problem' rather than a "genetically stable natural variation" in social language--requiring a two-sided need to learn. With a one-way view, people may not work as hard to provide speakers and workers with paid opportunities that are often provided to non-autisitic speakers or assistants.

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