Neurodiversity Wants Neuroinclusive Management — THINKING PERSON’S GUIDE TO AUTISM
My colleagues and I recently did something scary.
For the past few years, we built the Neurodiversity Pathways program at Goodwill of Silicon Valley. I worked as a consultant, and my colleagues Ranga Jayaraman (the father of an autistic adult son), and Khushboo Chabria (an ADHD woman) served as full-time employees. Together, we taught career readiness courses to neurodivergent adults, and trained companies on how to better understand and work with neurodivergent employees, all from a neuroinclusive perspective.
That was until this spring.
This past month, we launched Neurodiversity Pathways as a standalone consortium to offer organizations neurodiversity trainings and educational services directly from Ranga, Khushboo, and me. In doing so, Goodwill of Silicon Valley gave us its blessing and allowed us to retain the courses and intellectual property we initially built for them. But they also gave us something more valuable: their acknowledgment that efforts built for neurodivergent people are often strongest when neurodivergent people are helping lead them.
That’s not a small thing.
There Are Still Far Too Many Things About Us, Without Us
The truth is, most efforts meant to serve neurodivergent people still aren’t led by neurodivergent people. Too often, they’re shaped by people speaking about us, advocating for us, studying us, or designing for us—rather than by people with expertise and real-life experience rooted in our own communities.
Neurodivergent people are often invited to share our experiences while other people still set the agenda, make the decisions, control the resources, and define the priorities. We may be asked to tell our stories, but not trusted with real authority over what gets built or what matters most. We see this pattern again and again in scientific research, in government policy, in workplace programs, and in many other efforts where neurodivergent people are increasingly included, but not yet empowered.
A recent example shows how stubborn this pattern can be. In response to Robert F. Kennedy Jr.’s radical reshaping of the federal Interagency Autism Coordinating Committee toward anti-scientific efforts, a new independent autism committee was formed to defend evidence-based science and advance better research priorities. But as Scientific American recently reported, only one of the committee’s twelve members was autistic.
As frustrating as this is for many neurodivergent people, I also think it’s important to approach this reality with empathy and understanding. After all, while there are certainly exceptions, most people don’t intentionally set out to exclude neurodivergent people from programs and initiatives about us. Instead, much of that exclusion grew out of older assumptions about who counted as capable, credible, or qualified to lead. That meant parents, professionals, and other well-intentioned people were often the ones to step into that gap, given the microphone, the funding, and the institutional access.
That history is exactly why it matters when people involved in shaping policy, research, and advocacy related to neurodivergent people are willing to name the problem clearly. As Dr. Helen Tager-Flusberg, speaking as a member of this independent committee, said at its inaugural meeting, “I think it’s a no-brainer that we must urgently take up adding more autistic people to our group.” (The committee has since included two more autistic members, bringing the count to three out of 18.)
Statements like that are important not just because they acknowledge a frustratingly common shortcoming, but because they create an opening for neurodivergent communities to partner with organizations and institutions that are beginning to recognize the need for neurodivergent leadership. In turn, as our understanding of neurodiversity expands, so too should our expectation that neurodivergent professionals help lead this work. Neurodivergent people shouldn’t just be included in these efforts. We should be helping lead them.
The Impact Of Neurodivergent Leadership
I’ve often said that the phrase “nothing about us without us” is sometimes misunderstood as a rejection of parents, professionals, researchers, or other people who care deeply about neurodivergent lives. That isn’t the case, nor does it mean that neurotypical people have nothing to offer when it comes to neurodivergent people. It simply means that efforts affecting neurodivergent lives work best when neurodivergent people are empowered to help shape them. That benefits not only us, but the people who care about us as well.
When Wiley Publishing asked my colleagues and me to write a new book on autism for its For Dummies series, we made sure to include that exact point:
“To be truly effective, every autism organization must include autistic people in its leadership. This isn’t just about representation; it’s about making sure the people the work is meant to serve are guiding it. Without the input of autistic leaders, organizations risk creating programs and policies that miss the mark for the very community they’re designed to support.”
That same principle applies across neurodivergent communities. Whether the community in question is autistic, ADHD, dyslexic, intellectually disabled, or otherwise, efforts meant to serve people work better when the people at the center of that work help lead it. After all, neurodivergent people often have deeper insight into what actually works in our own lives, which means that efforts about us become more effective with us.
At the same time, neurodivergent communities also have a responsibility to include the needs and perspectives of those whose lives intersect with our own. “Nothing about us without us” shouldn’t be read as exclusion. After all, every community needs allies. Instead, it should be understood as a call for more accurate, grounded, and accountable leadership.
We’ve found this approach to be effective in our own work, where two of us are neurodivergent professionals and one is the parent of an autistic child. That mix of perspectives helps us see neurodiversity from multiple angles, challenge our assumptions, and turn our individual insights into collective guidance that is empathetic, practical, and usable.
The Obstacles Neurodivergent Leaders Face
To be brutally honest, neurodivergent-led efforts routinely start at a disadvantage. Neurodivergent experts often have less capital, fewer connections, and less institutional backing than neurotypical-led efforts built in our name but not by us. The playing field simply isn’t level. As a result, neurodivergent-led work is often expected to prove itself, while starting from much further behind.
Additionally, it can be demoralizing for neurodivergent experts, and for neurodivergent communities as a whole, to routinely see neurotypical-led initiatives built in our name but operated without us. It reinforces the idea that neurodivergent people are valued more as subjects of the work than as leaders of it, and reflects a pattern in which we may be invited to participate, but still not trusted with meaningful authority. More than that, for those of us who care about the effectiveness and practical impact of neurodiversity efforts, it is heartbreaking to see well-intentioned efforts lack the kinds of perspective, insight, and practical grounding that could make them more effective.
This is the sticky, stubborn pattern that work affecting neurodivergent communities has been trapped in for far too long. And like so many patterns that harden over time, it doesn’t merely sit in the abstract. It narrows who gets seen, who gets trusted, and who is given the chance to build. For highly capable neurodivergent professionals, that often means starting with smaller networks, less financial cushion, and limited room to find their footing while building something from the ground up.
My colleagues and I are acutely feeling that right now. As I write this, we’re spending from our own savings to help get our work off the ground, covering our own expenses, building our own systems, marketing to new clients, stepping out in good faith, and doing all the endless, unglamorous work that comes with trying to make something both useful and sustainable. And yes, some days the learning curve feels less like a curve and more like a wall. But we keep going because we believe in this mission, and we’re far from the only neuroinclusive effort experiencing this.
Of course, none of these obstacles means neurodivergent-led efforts are less capable. It just means we’re often asked to prove more with less. That’s exactly why real partnership, real investment, and real opportunities matter so much.
How We Can Be More Neuroinclusive
If we’re serious about neurodivergent-led efforts, then this has to shape not just what we say, but what we do.
If you’re looking to hire experts, speakers, trainers, or consultants on neurodiversity, seek out neurodivergent-led organizations. Don’t just stop at people who can speak about neurodivergent lives from the outside. After all, if the topic is neurodiversity, the people most directly tied to the subject shouldn’t be an afterthought. They should be people leading the conversation.
And if you’re part of an organization, school, nonprofit, advocacy group, or service provider that says it serves neurodivergent people, take a harder look at your own structure. Too often, neurodivergent people are asked to consult or share personal stories while other people still shape the priorities, programs, and decisions. The goal isn’t just to include neurodivergent people around the edges. It’s to build efforts where neurodivergent people are helping shape what gets created.
There are practical ways to do this. Existing organizations serving neurodivergent communities can actively recruit and hire neurodivergent experts into leadership roles, create advisory boards of neurodivergent people with real influence over decisions, and mentor emerging leaders while making sure those opportunities come with actual power to shape outcomes.
And for more established organizations, one of the most meaningful things they can do is invest in neurodivergent-led efforts beyond their own walls through grants, referrals, partnerships, and other tangible forms of support. That kind of investment helps fulfill your mission, expand your impact, and strengthen the broader ecosystem that supports neurodivergent people and our families.
These aren’t symbolic steps. They’re practical ways to make sure programs, advocacy, and policy are actually shaped by the people they’re meant to serve.
That’s part of what my colleagues and I are trying to do now.
Launching Neurodiversity Pathways as a standalone consortium has been exciting, meaningful, and yes, scary. But it also feels necessary. Because if we want a more neuroinclusive world, we can’t just ask neurodivergent people to simply join the conversation to add our voices. We have to trust and empower neurodivergent people to lead.
Image by Mohamed Hassan from Pixabay
