How neurotypical nonprofit pros can be better allies to the autism community - Generocity Philly

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Sep. 7, 2018 12:46 pm

How neurotypical nonprofit pros can be better allies to the autism community

We asked 15 relevant Philly nonprofits if people with autism were represented in leadership roles; most didn’t respond or declined to comment. Here are some actionable tips for recruiting and retaining board members from diverse neurological backgrounds.

The Kinney Center for Autism Education and Support self-reported that employees with autism hold leadership positions at the organization.

(Photo via facebook.com/KinneyCenter)

Full disclosure: The author has previously worked under Sylvia van Meerten, who is quoted in this article.
Editor's note: This article has been updated with details about more local nonprofits with autistic people on their boards. (9/10, 9:35 a.m.)
Nonprofits that wish to fully serve the needs of autistic people and people with autism must create a neurodiversity-friendly space that enables all types of thinkers to help direct a nonprofit’s work.

This does not mean a nonprofit with mental health professionals, doctors, parents of autistic children and advocates in leadership roles can’t benefit the autism community — only that a fully inclusive approach would be beneficial advances any nonprofit’s mission if they serve the autism community.

(Following the advice of Autistic Self Advocacy Network (ASAN) and the Radical Copy Editor, this article uses person-centered language, which means phrases like “autistic person” will be used primarily, excluding direct quotations.)

Sylvia van Meerten’s organization, Empower Autism, runs an annual conference called “Autism and the Pursuit of Happiness” where a majority of the speakers are on the autism spectrum.

“The input of people with autism is paramount to being ethical in the [autism] field,” she said. In other words: Any program that is for autistic people or is supposed to be autism-friendly should incorporate feedback from individuals on the autism spectrum.

“Having any type of advisor or board can be humbling because the whole idea is that they’re going to tell you when you’re doing it wrong and when you’re doing it right,” she continued. “One of the things that I really cherish about knowing people on the autism spectrum is getting to hear blunt feedback.”

ASAN and Autism Speaks are two national organizations serving the autism community that have board members who self-identify as being on the autism spectrum in their board biographies; see ASAN’s here and Autism Speaks’ here. ASAN is similarly open with its staff biographies.

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The ASAN and Autism Speaks are two national organizations serving the autism community that both have board members who self-identified as being on the autism spectrum in their board biographies. ASAN is similarly open with their staff biographies.

With this in mind, Generocity surveyed autism-focused organizations with a presence in Philadelphia to find out if people with autism were represented in leadership roles.

However, the majority of the 15 nonprofit organizations didn’t respond or declined to comment. Of those who responded:

  • One organization cited confidentiality concerns for employees and board members
  • Another replied but neglected to answer our questions
  • And three acknowledged that they had no one with autism on their board of directors.

Of those three, The Kinney Center for Autism Education and Support, self-reported that employees with autism do hold leadership positions. Another organization, Friendship Circle, reported that people with autism volunteer weekly.

Only one area nonprofit researched, ASCEND, named an autistic individual on their board of directors. Bob Schmus recounted how he ended up on the board of ASCEND.

“A few years ago, I joined this group called Socializing on the Spectrum. It’s a group of young adults like myself who are on the spectrum. One night, we were at a social event and a woman came in and talked about ASCEND to see if anyone wanted to be elected to the board,” he explained; the woman was Maleita Olson, former board president of ASCEND.

He applied and was elected to the board in 2015. Outside of his work with ASCEND, Schmus is a licensed clinical social worker who works people on the autism spectrum.

Having an autistic individual on the board has influenced the range of services ASCEND provides: One of the challenges Schmus noticed was that ASCEND’s services were geared toward autistic kids and their parents. Schmus helped ASCEND start a social group for young adults, Chips, Chocolate and Chat, which meets at the Ruttenberg Autism Center (RAC) in Blue Bell, Pa., to help meet the needs of autistic adults. Schmus attributes the success of this new program to both the presence an autistic board member and a successful partnership with the RAC.

If at least 50 percent of adults with autism are unemployed, then there are likely serious obstacles to an autistic person joining a board. Previous reporting by Generocity contributors has covered the importance of showcasing skills instead of relying on interviews, how employing folks with autism at social enterprises prepares them to enter the workforce and how to impact policy in order to create a more diverse workplace.

Creating a neurodiverse board of directors requires intentionality. With that in mind, here are some actionable tips for recruiting and retaining board members from diverse neurological backgrounds:

1. Be super-specific.

Provide accurate job descriptions and set clear expectations for time commitment, the meeting format, fiduciary responsibility, and the implications of their advice.

“It’s especially important that we clarify all of our hidden curriculums so we’re being really explicit about what we think we’re offering in the position,” said van Meerten. And to ASCEND’s credit, Schmus described the organization’s policies as straightforward.

Even beyond the initial description, it’s important to always clarify when your organization is legally required to follow the advice of the board members and when you are just looking for casual feedback from the board. Explain if board members should give advice on all of the operation or just a specific part. Avoid using vague language when having some of the more difficult conversations, such as about fundraising.

2. Hear people out.

According to Schmus, what made him feel welcome on ASCEND’s board was that “they didn’t have me on the board to just say they I’m someone on the spectrum who’s on the board. They listened to what I had to say and were really grateful of my input.”

When listening to input, van Meerten advised watching out for the “danger zone” after feedback is given. After asking for feedback, “people automatically want to justify why they were doing what they were doing,” she said. “Or they want to explain why the perspective of the autistic person is skewed and doesn’t really make sense and isn’t taking into account A, B or C.”

When you asked for feedback, pause and let it sink in. Thank the individual for their feedback and give yourself time to consider it. Later, follow up and explain how their feedback contributed to your decision making. Any sort of defensive or combative response risks confusing really any board member of any neurological background about why you asked for their perspective in the first place.

3. Be transparent.

Given the dearth of both online board biographies in general and especially ones that mention neurodiversity, the final tip is to publish biographies that acknowledge if a board or employee in a leadership position is on the autism spectrum. Looking to the larger disability nonprofit community, both Bridges from School to Work and the Special Olympics Pennsylvania do this.

Beyond creating an atmosphere of inclusivity, this creates a clear standard that the folks you serve have an impact on the direction of your organization and sets a powerful example for younger folks with autism or parents of a newly diagnosed child.

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Creating a diverse board is challenging, especially when the goals are to avoid tokenism and to find someone who has both skills and a perspective that aid your organization’s goals. But neurodiversity should be a larger part of conversations about any nonprofit’s leadership and especially so for those who focus on aiding the autism community.

Do you have feedback on this article or know any other board members with autism in the Philadelphia area? Please email markallanmanning@gmail.com.

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