Reducing stigma and creating equitable solutions for neurodivergent individuals

Recently, Understood.org, a nonprofit supporting those with learning and thinking differences, launched the NeuroEquity Research Collaborative. This initiative funds a series of organizations who are conducting research to better serve neurodivergent individuals. By increasing acceptance and creating support systems, regardless of race, gender, or economic status, the research collaborative aims to empower the 70 million Americans with learning and thinking differences. 

New York Nonprofit Media caught up with Understood.org Vice President of Expertise and Strategic Design Sarah Greenberg, who in the following interview shares her insight about how the collaborative plans to reach its goals. Greenberg, who has 15 years of experience in the mental health and education field, joined Understood.org about 18 months ago and continues to write for her Psychology Today column called Life’s Work. 

This interview has been edited for clarity.

Reading your mission statement, how are you personally working towards creating awareness for the challenges, skills, and strengths of people who learn and think differently?

I feel so lucky to do this work full time. I did start this work in terms of mission alignment before I came, which is what made it such a good fit. In my last role, I lead clinical design at a startup called Better up. I started our first neurodivergent talent ERG, where those with thinking differences are those who identified with the term neurodivergent, and that could include a lot of different experiences, we would gather every couple of weeks and talk about our experiences. It was really incredible. Having worked in mental health tech, I've worked really hard to infuse neurodiversity awareness into the products and approaches that we build to scale. If we can imagine a mental health tool going out to a million people, when there's the difference between when there's neurodiversity awareness of neurodiversity, and the ways different brains learn and think differently, when there is awareness of that infused, I think there's a potential to help a lot more people. I talk about this a lot. I write a column in Psychology Today. I have a learning, thinking difference myself. It's part of my professional life and part of my personal life too. 

What is the NeuroEquity Research Collaborative? Who is involved in this initiative and what is your team working towards? 

The NeuroEquity Research Collaborative was created to fill the gaps in research focused on neurodivergence and equity. It's the first activation of our NeuroEquity fund. What's really exciting to me about the NeuroEquity Research collaborative is that typically we see a 17 year lag between when research enters practice. With the research collaborative, we brought together this collaborative of ourselves and six partners, focused on creating more equitable conditions for those who learn and think differently with an eye towards right compounded marginalization. It's very exciting. Given this, you know, typical 17 year research slide that we see, one of the most exciting things about NERC is that with every research project, there's research, which is so incredibly important and there's a direct tie to impact that we can make in the very short term. That's what we get through the partnership. We're working with incredible researchers, we're working with incredible community partners. The focus is really on new findings, but also really applying those new findings to help individuals. Right now, we don't want to wait 17 years.

How will the NeuroEquity Research Collaborative work to reach its goal of working with 70 million Americans with learning and thinking differences?

We have six partners, each partner is owning a specific project. A lot of the value comes from the collaboration itself. There was a recent event at Understood, where best practices are shared, inspiration, shared, alignment occurs. In October, we'll have a symposium where each project is again shared with the group and with other key stakeholders in the community. All of these research projects have varying isolation, versus when we can bring a group together to really catalyze a much higher level of impact through shared learning and resources. 

What are the modes of collecting and evaluating data that researchers will use?

It's very different across projects. One of our community partners is Unidos. They're the largest Latino civil rights organization in the country. Their work focuses on research that then informs Spanish language hubs, a digital hub. What's really interesting is that we've noticed at Understood, about 40% of our audience is Spanish speaking, that happened fairly organically. Of course, we've done bilingual resources for a long time. The question arises, are we really meeting the needs? In working with Unidos, who has so much knowledge and understanding and is a community based partner. The methods there for collecting data were focus groups with Spanish speaking families. What’s unique about these focus groups is that it's Spanish speaking families, including their kids. Often research doesn't incorporate the views of youth themselves. The method there was the focus groups and those focus groups were analyzed. Those findings then fed into this hub that now exists on our site and is accessible by anyone. 

I‘ve read your organization say that it uses, “academic intervention for universal solutions.” What does that mean? Can these “universal solutions” really be generalized to help all people?

What we mean by universal solutions is aligned with the concept of universal design. Neurodiversity is a viewpoint that brain differences are normal. It's a term that was coined by an Australian sociologist, Judy Singer. It’s a beautiful term brain differences they're not bugs, they're expected, necessary variations across the human brain, as vital to society as we would see biodiversity is as vital as vital to the planet. When the world isn't a sign for difference, this is where we see a lot of challenges. A lot of the challenges that those with learning and thinking differences experience aren't necessarily because of their brains or any problem, these are, again, normal expected differences. When the world isn't designed for difference, that's where we encounter more and more challenges. Learning and thinking differences are lifelong. It's not about curing them, it's about offering the right support. A learning and thinking difference is a variation that affects the way one might think, learn or interact with others.

Historically, there may have been a viewpoint that this is only for someone with dyslexia and this is only for someone with ADHD. What we see more and more in education, and even the workplace, is this concept of universal design. When you design for difference, it actually benefits everyone. I'll give an example of the classroom. Are there ways that we can increase personalized instruction without adding extra burden on teachers? That's great for those who learn to think differently and that's really great for anyone. If we think about the workplace, can we provide autonomy to employees to ensure that they can get their needs met throughout the day? If someone on my team says they need to take a five minute break every hour, great. It doesn't matter if I know if they have a learning or thinking difference or not. That's a really easy accommodation that I can offer that may be good for anyone for a variety of reasons, that happens to be a common accommodation given for those with ADHD, but it can also be a good accommodation for someone with back pain, or someone who maybe has traumatic stress. That's the concept of universal design, when we design for the edges, in fact, many people tend to benefit.

In intervention design, we think about the target population and the potential halo effect. We look at who’s often left out of the research. Is research on best practices for learning and thinking differences, has it historically included, let's say, for example, non English speakers? Based on what we see, with a lot of the support offered to children in schools, it's not really designed around the needs of non-English speakers. This is where it's really important to within our equity research collaborative, ensure that those who have historically perhaps have not been included, are included. As a result, we expect a halo effect for many.

The research collaborative includes several different organizations. Could you tell us more about the Kessler Foundation’s Strength Identification and Expression tool?

It focuses on identifying strengths. The purpose there is that often we have a very pathologizing lens on neurodivergence. Strength identification is another example of something that can be useful for anyone. I am also an executive coach and that's often the first thing you do with anyone, you identify those strengths. When we think about an individual who has perhaps spent their life being told they have shortcomings, or differences that aren't okay, it becomes even all the more important. KF stride was developed as a tool for young adults on the autism spectrum. Now, this research progress is focused on testing the tool with young people who have ADHD and dyslexia. The direct benefit is that this tool focuses on effective interviewing skills. The unemployment rates are much higher for those with learning and thinking differences. The idea is that if individuals have high awareness of their strengths, and they know how to talk about them in an interview, they're more likely to face less barriers to employment. It's a good example of what we were talking about earlier about universal design. Here's a tool that was designed for those with autism and now we're looking to see if we can expand it in a way that's helpful also for those with ADHD and dyslexia.

What about the Promise Project? How will researchers examine the effects that neighborhood-level police behavior have on reading skills in Black and Latino children?

That's one of the projects that we're pretty excited about. We take an ecological view of the challenges that individuals face. It's easy to look at the challenge only as something an individual is experiencing. Dr. (Amy) Margolis and her team at Columbia are looking at something in the community, which can be an important protective factor and also such an important risk factor. I don't want to give any of the wrong information about specific methodologies. It's so nuanced, but if you would like more follow up information on that we can send it. I'll leave it to the team to say whether we can send that now or if you know that we'll wait until after we have the October symposium.

In what ways do you maintain relationships with the families of these children? What is the importance of these connections? Can you tell us a bit about the children you work with? 

That was actually a big topic of conversation when all the partners gathered in May.  There was a workshop on participatory research. One of the best practices in participatory research is that when you bring someone into a research study, it's important to bring those findings back to participating individuals. In October, I expect that we'll hear back on how everyone has done that in their projects. Within this group, we have a lot of incredible leaders and thought leaders when it comes to participatory research and a lot of alignment, in terms of values and the importance of designing everything we do in partnership with the community. It's not like us versus them. It's not you're the test subjects, we're the experts. This is  a participatory collaboration. It's important for them to get that visibility. 

Can you talk about your upcoming October 2024 research symposium? What can we expect? Who will be there?

Currently, the October symposium is being planned.  I can tell you that it'll be at Columbia University. We're so excited, we'll be getting updates on each of the projects. We'll be having additional speakers and keynotes that are relevant to this work, all in alignment with our various missions. For more detail, please stay tuned. The details are currently being planned and we'd love to share more as it progresses.

Is there anything else you would like to tell us about?

Greatschool.org is a good example of working alongside others to achieve impact that's sustainable and also impact now. Families shouldn't have to wait for years to come. We want to have a positive impact now. Greatschools.org is a popular site that parents go to all the time. If we imagine leveraging data on the needs of parents and caregivers whose children have learning and thinking differences and if we imagine getting their participation in understanding  where schools are doing a really great job of this and where schools or maybe maybe families might expect to have some more challenges. This goes into the website so it's useful immediately to millions of parents who might visit. You're not born knowing if you have the learning, thinking difference. Diagnostics aren't necessarily equitable. Not everyone who has a difference gets identified. This information is extremely helpful for parents who know their children have a learning, thinking difference and for  parents who may have never even heard the term. It gets it more in the world. It has all of the elements of how do you create a movement of awareness, how do you give support in the here and now and how do you do research that can be sustainable and impactful for years to come?