Director of CAARES and Associate Professor Noor Syed Shares Her Personal Journey to Advocacy

This excerpt is taken from “A Deep Dive With Noor Syed.” Read the full story.

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. 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.

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. 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. 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. 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. Our students in the ABA program tend to support autistic learners and neurodivergent learners. 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. 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.

That was the impetus for starting conversations with as many people as possible. 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.

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?

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.