A Deep Dive with Noor Syed, Director of CAARES and Associate Professor

Noor Syed, associate professor of applied behavior analysis (ABA) and the Susan H. Turben director of autism advocacy for the Center for Autism Advocacy: Research, Education, and Supports (CAARES), has worked at Empire State University since 2020. Originally from Dix Hills, New York, and currently a Bethlehem, Pennsylvania resident, Syed provides guidance and support to CAARES, including oversight of initiatives, strategic planning, and sustainability development, besides her duties as a faculty member for the ABA program.

Did you have any childhood interests or passions that, in hindsight, link to your present-day work?

Syed: Reflecting on my childhood interests and journey, I have always loved working with children, which is funny because I was a kid. I’ve always loved teaching in some capacity and found so much joy in supporting children.

When I found ABA at SUNY Binghamton—at the time, it was one of the only programs in the United States for ABA, and I think the only undergraduate program—there was a lot of support for children, autistic children, children with intellectual and developmental disabilities, and neurodivergent children. I always think of it as the light at the end of the tunnel. There was a moment where I thought, “okay, this is what I want to do for the rest of my life.”

So, what was it that first drew you to ABA?

Syed: Being the child of immigrants is important and powerful because coming to this country, English was not my parents’ primary language—and a lot of what is shared in this country, understandably, is in English.

Where my parents were from, especially at the time, there were very few resources in support of children with disabilities or other support needs. I had a cousin who sadly passed away a few years ago, but he was born where my dad is from, which is Pakistan, with what at the time was diagnosed as profound to severe mental retardation. We don’t use that diagnosis anymore, but essentially, really significant disabilities.

In that geographic region, there were no resources for that whatsoever, and beyond that, there was a significant stigma and shame that was attached to disabilities. My cousin was sort of hidden away while growing up, and my aunt and uncle—who were, and are, incredibly well-intentioned, kind, compassionate people—just didn’t know how to help him. So, they brought him to the United States and he lived with us for some time when I was a child. I have these beautiful memories of us laughing and playing together and creating that bond.

My aunt and uncle were finally able to come to the U.S. looking for resources and supports. Even in the U.S., especially at that time and into today, resources are limited, and they weren’t quite sure how to support him. They found a highly reputable hospital in the country who claimed they could help their son and suggested they enter him into an experimental surgery. 

English was not my family’s primary language, and we’re from a culture where when an authority figure says to do something, you trust them—you don’t question it. They were in a major power differential; they didn’t feel comfortable asking questions, nor would they potentially have understood the answers to those questions. So my family said yes. They entered him into the surgery, and they didn’t understand its potential negative ramifications.

After this procedure, my cousin ended up losing all of his skills and became a ward of the state. This was heartbreaking for my family—extraordinarily heartbreaking.

Fast forward to my college years—I loved working with children and felt like it would be teaching for me. At SUNY Binghamton, there is the Institute for Child Development, which was founded by my dear mentor, Dr. Ray Romanczyk, and is still there—they just celebrated 50 years. I had the opportunity to intern there. While interning, there was a learner—a boy—who was someone people were a bit afraid to work with because he was tall and engaged in some aggressive behaviors.

When we were working together, I was sitting with him and working on colors. I said, “Hey, can you find red?” I distinctly remember that he looked down at all the different colors, found red, and looked up at me with the biggest smile on his face, and this incredible amount of pride. It was that moment when I thought: this is what I want to do. I want to help children—who might learn in different ways—learn and be proud of themselves.

In thinking about what my family experienced, I want to support those who may not have a voice, or who might not have been historically represented in decision-making with the power to advocate—to be empowered with knowledge and do that in a way that’s culturally responsive.

Let’s jump ahead a bit. Can you share the story behind how you founded CAARES, and what need you were aiming to fill?

Syed: I was incredibly honored six years ago to have been introduced to Empire State University and hear that they were interested in launching a Master of Science in ABA and an autism center. I was honored and fortunate to have been hired as the person to help start the autism center and the master’s program.

The person who brought me on, who was a big champion behind what was then known as the Center for Autism Inclusivity—my dean, Dr. Nathan Gonyea—and the president at the time—Dr. Jim Malatras—was also incredibly supportive of it. They conceptualized a center that was essentially focused on education, research, and practice.

I was working on the Master of Science in ABA, and kept thinking about the importance of affirming, compassionate practice. How do we support human beings and treat everyone with dignity? Our students in the ABA program tend to support autistic learners and neurodivergent learners—how do we really instill that? As we were conceptualizing CAARES, it was important to ask: how do we support the autistic and neurodivergent community? And more importantly, how do we support them in the way that they want to be supported?

We had pushback from the autistic community. They said, “You are a behavior analyst.” And just a bit of background is that there is a history of controversy in the autism community about behavior analysis. So they said, “I don’t feel comfortable with someone who’s a behavior analyst spearheading this type of initiative.”

That was a really pivotal moment for me—I could either disregard the feedback we were getting and just focus on what I thought was important, or I could take this moment to stop, listen, and learn from the autistic community and hear what they need. It was a valuable moment for me, it has led to today, so I’m very grateful for it.

That was the impetus for starting conversations with as many people as possible, which led to focus groups. We were holding town halls, and what we heard overwhelmingly was: rather than asking people to change, how can the environment change to be as supportive for as many people as possible? That was how the mission, vision, and heart of CAARES were born, and it has really shaped the ABA program.

Also—I’m here talking about it, but this is the work of a village, and I just happen to have the honor to be here to represent it. I’m incredibly proud of the work that my colleagues at CAARES have done—they are phenomenal.

I feel proud because in the contiguous United States, only about 2% of colleges and universities support autistic students. The majority of them require disclosure or some kind of registration. And then, about 50% require additional payment. What we do at CAARES is completely free for everybody. Nobody has to disclose, nobody has to register. We’re trying to just help the culture and systems change.

For colleagues who are just getting started thinking about neurodivergent inclusive teaching, what is one shift in mindset or practice that tends to make a big difference?

Syed: I want to credit Dr. Lauren Lestremau Allen with what I’m about to say. At CAARES, we feel so strongly about universal design—how does an environment change to be as supportive for as many people as possible?

One of my favorite examples is curb cuts, which are the parts of the sidewalk that slope down to street level. They have not always been part of our environment in the United States—they are more recent. Those curb cuts are so important as a visual depiction of universal design and inclusivity, because they are beneficial for everybody. It is a low response effort, environmental modification that makes the environment better for everybody.

For those thinking about supporting neurodivergent students and inclusivity, our ask is always: what’s one thing you can do right now that’s low response effort that could benefit everyone? Closed captioning videos, or transcripts for lectures could be an easy way to support our students.

You recently participated in a UN roundtable on technology and autism and were also named to the Scientific Council of the Organization for Autism Research. What does it mean to you to bring SUNY Empire and CAARES to these global conversations?

Syed: It’s an honor and privilege to be part of those conversations. It’s humbling, too. You enter those spaces and think even though there’s so much room for growth, how lucky we are that we are all championing inclusivity. We’re all championing equity.

A bit of background for my role in the Scientific Council is that we get the opportunity to vet grant proposals that come in. I take very seriously that a lot of our research in autism, psychology, and the sciences has been conducted by folks who might identify as part of the WEIRD population—that is Western, educated, industrialized, rich, and democratic.

Many of these organizations have had very few women-identifying executive directors, CEOs who are BIPOC—Black, Indigenous, people of color—so I look at that, and think about the research, and that it may not represent everybody. In the role that I have in the Scientific Council, it is a privilege to weigh in on who gets funding. I take that responsibility very seriously, and I’m excited to be part of those discussions.

With the United Nations, my role in that roundtable is to take everyone’s comments and put them together as a discussant. Everyone sitting at the table is representing folks who have not had as many resources or opportunities. That we get an opportunity to share ways that someone can engage in actions towards inclusivity that are affordable and translate across the world is an incredible experience.

What is a niche interest of yours that is completely unrelated to your work?

Syed: There is a studio down the road from me that does hot fitness. It’s not just like hot pilates, which is fabulous, but it’s hot high intensity interval training (HIIT) and hot weightlifting, and they kick the temperature up in there to 120 degrees Fahrenheit. That sounds nuts, but there is something about it where you just feel so accomplished and I love it. Those are my 5 a.m. workouts. I also love walking around and looking at houses.

Lastly, what is a piece of media you think everyone should check out?

Syed: A dear colleague, Cathy Mazak, has a podcast called Academic Writing Amplified. The things that she has taught me have been so valuable. I also love the book “The Alchemist” by Paulo Coelho.