Q&A with Dani Maskit, Chief Ursine Officer & Trustee at Heading for Change

Dani Maskit is an Autistic advocate, Chief Ursine Officer, and Trustee at Heading for Change, driving initiatives that center Neurodivergent voices in funding, research and cultural narratives. 

In this Q&A, she shares her insights on leadership, advocacy, and the impact of storytelling and investment in advancing understanding and systemic change for Neurodivergence

How have you led Heading for Change’s work on Neurodivergence, and what has guided your approach?

As an Autistic person and an advocate, I’ve been focused on shifting the dominant narratives around Neurodivergence and making sure Neurodivergent voices are centered in funding and investment decisions.

At Heading for Change, we’ve allocated part of our grants portfolio to systems change initiatives in Neurodivergence, recognizing that investment can drive transformation in this space just as it does in gender and climate. We began by mapping the landscape, looking for initiatives that challenge existing biases, reframe Neurodivergence as a source of strength rather than deficit, and build real structural change.

What we’ve found is that it’s still an emerging field. Most philanthropic initiatives are led by people who aren’t Neurodivergent or aren’t engaging in true systems change, and on the commercial side, there’s very little deal flow - only a handful of investible models. There’s also a lack of awareness and investor education, so part of my leadership has been about naming those gaps and helping funders see this not just as a social issue, but a systems issue.

Ultimately, it’s about rethinking how we define value, leadership, and impact through a Neurodivergent lens, and making sure that transformation is led by those with the lived experience of being neurodivergent.

Heading for Change has recently provided a grant for a documentary raising awareness about the controversial treatment of Autistic and disabled individuals. How did you get involved with the film, and what drew you to it?

For a few years now, I have been following the work of the organisation, Autism Speaks, which dominates funding and messaging around Autism. Their focus on “curing” Autism centers parents as victims instead of understanding their children’s world. They endorse a therapy practice called  Applied Behavior Analysis, or ABA, which many Autistic advocates call Autism conversion therapy. It comes from the same behaviorist roots as gender conversion therapy (developed in the same UCLA lab in the 1960s) and it uses the same manipulative theories without an ethical foundation. A lot of voices in the Autistic community have been advocating for bans on this approach, but their voices have generally been drowned out by well-funded groups like Autism Speaks.

I recently co-wrote a philosophy book chapter  arguing ABA is never acceptable in an Autism context. While working on that, someone connected me with a producer working with an Autistic filmmaker making a documentary about the filmmaker  who was trapped for years in a facility which uses powerful electrical shocks as punishment. It’s a horrifying, and ongoing, story. 

When I met the director, I realized the film could do what we’d been trying to do with writing: show how deep this problem runs, connect it to the broader system, and help people see how they’ve been complicit without realizing it. It’s a beautiful film with enormous potential for impact, which will hopefully advance the movement towards banning ABA and changing how society understands Autism.

What kind of change do you hope this film can create? 

What I’ve been looking for isn’t just small, incremental changes, but something that can bring about real societal change and a deeper understanding of what autism actually is.

This film feels like it has the potential to reach a lot of people and elucidate a horrible reality. I’m proud to be involved with it, and the potential impact is enormous. The team is currently finalizing a cut of the film, aiming to submit it to major festivals, including Sundance.

You said you contributed a chapter on a recently published book about the contemporary philosophy of Autism. What was your focus in that work?

The book explores emerging philosophical questions related to Autism. Our chapter focuses on both tearing down the philosophical and scientific underpinnings of ABA, as well as neurocognitive approaches such as those espoused by Simon Baron-Cohen. In their place we propose an approach which treats neurodivergence as a different, but equally valid, way of being human. This places expertise in neurodivergence with Neurodivergent communities, where it belongs, rather than in the hands of neurotypical researchers and clinicians. 

We challenge deficit-based narratives and encourage readers to think critically about how societal structures, education, and medical frameworks often fail to center Autistic voices. It’s about creating space for new thinking, both academically and culturally, around how we understand Neurodivergence.

How can societal attitudes towards Neurodivergence evolve?

The primary shift sought by the entire set of movements around disability and neurodivergence is away from a belief that being different is inherently bad, and towards an understanding of how we have allowed ‘normal’ to be defined in a way which disadvantages most people. In some sense the foundational question around why we need conversations about neurodivergence, disability, race, gender, etc. is the same: why is not being an able-bodied, cis-gendered, straight white man always seen through a lens of inferiority? 

When one takes a broad view of how our societies work it is really clear that the metrics and standards around academic performance, business success, etc. are all built from a perspective of assuming a specific model of white maleness. Something as simple as workplace performance expectations, which assume that employees will present as being emotionally uniform every day they show up for work that asks relatively little of some, and a great deal of others. And even the standards of what workplace behaviour should be, and what is acceptable in a classroom, are often crafted in a way which places significant barriers in the ways of some.

I like to point out that most people’s definition of inclusion is to take structures that have been designed with zero consideration for the needs of many, and offer to allow us a ledge somewhere to perch and try our best to cope. Real inclusion requires rethinking the entire structure and striving to design systems where everyone is equally comfortable, and equally uncomfortable. Most of the backlash against things like DEI and the bugbear of ‘wokeness’ is those who have the most comfort and the least discomfort resisting giving up any of the former and taking on any of the latter. That assumption of ease and comfort has to change if we are ever going to have real progress towards inclusion. 

If you want to learn more about how investors can avoid reinforcing harmful deficit-based models in Neurodivergence-focused funding, you can read Dani’s opinion piece in Impact Alpha.