by Grace Clark, PhD, SLP (speech-language pathologist); NWACS board member
reading time: 5 minutes
The views expressed in this post are those of the author and interviewee and do not necessarily reflect the views and policies of NWACS. No endorsement by NWACS is implied regarding any device, manufacturer, resource, or strategy mentioned.
In the Spotlight: Alyssa Hillary Zisk, PhD
I recently had the opportunity to speak with Alyssa Hillary Zisk (they/them), our presenter for the 2025 NWACS Virtual Fall Conference. Alyssa is an autistic AAC user, researcher, and advocate. Their work challenges many of the field’s longstanding assumptions. Their insights are grounded not only in academic training but in their personal experiences navigating the world with AAC.
Our conversation explored
how they came to AAC,
what continues to shape their research and advocacy,
and the fundamental shifts they believe are needed in AAC practice.
Alyssa’s relationship with AAC is both personal and political. They describe having spent their entire life in the “space between” being nonspeaking and being able to fully and consistently meet communication needs through speech. “I’ve generally been speaking enough that an outside observer wouldn’t realize speech was the issue,” they shared, “but the need has always been there.” The turning point came during a moment when speech wasn’t available, and a friend handed them a pen. That small gesture helped reveal a pathway that speech therapy had never addressed.
Later, Alyssa pursued a Ph.D. in neuroscience, driven by dissatisfaction with the state of autism research. “I thought that would be a good credential for being taken seriously when calling it a mess—and trying to fix it.” Along the way, they realized AAC research had many of the same problems. “It wasn’t just autism research that needed fixing, it was also AAC research, and the overlap between the two.”
Alyssa’s formal entry into AAC scholarship came in Fall 2017, when they enrolled in a graduate-level AAC course. At the time, they were the only AAC user in the class and the first AAC user to take the course at all. Surrounded by future speech-language pathologists, Alyssa found themselves in a dual role: both student and lived-experience expert. As the course progressed, their professor frequently noted how much they were learning from Alyssa’s insights and perspective. This prompted Alyssa to ask: Am I the curriculum or the student? Could I be both? These questions became the foundation of a powerful reflection and ultimately a published paper exploring the tension between being the object of research and being the researcher. In that class, Alyssa completed and later published a project on AAC use by speaking autistic adults. And in so doing, claiming space not just as someone studied, but as a scholar, educator, and knowledge creator in their own right.
When asked about the biggest influences in their AAC journey, Alyssa doesn’t hesitate: “Other autistic AAC users. My peers are 100% the most influential force, followed by AAC users who aren’t autistic.” For Alyssa, the most meaningful learning didn’t come from textbooks or professionals. It came from community connection and listening to other users’ lived experiences and reflecting on their own.
This peer-led perspective shapes the way Alyssa approaches AAC research today. “Step one: Hi, I use AAC for myself. Step two: I’m in community with other AAC users,” they said. “A lot of my research is actually about knowledge transfer, either from my communities or from other disciplines, and then applying it to AAC.” Alyssa is especially interested in identifying the mismatch between professional intentions and user experiences. One key area of critique: the disconnect between using AAC as a teaching method and recognizing it as a communication modality. “Most modeling looks like someone talking out loud while hitting a few buttons,” they noted. “That’s not what we do. I’ve never spoken a full sentence and then repeated it with AAC. But I’ve definitely done the opposite.”
Alyssa is also exploring how creative practices like improv can support AAC learning, particularly for adults. “We know play is a great way for kids to learn,” they said. “Improv is like adult play. Some of my AAC improv games are actually helping people learn what it’s like to communicate differently. I’m slowly working on testing that.” What started as an artistic outlet is now evolving into a research project.
When discussing barriers AAC users continue to face, Alyssa is direct: “Other people.” They emphasized that access to effective AAC tools is often denied or misunderstood because others fail to recognize or respect a user’s needs. This includes professionals who continue to treat AAC as a last resort or who insist on speech as the ultimate goal. “If something prioritizes speech- implicitly or explicitly- I probably want to challenge it,” they said. “That includes the name of the field. Augmentative to what? Alternative to what?”
Alyssa also shared powerful thoughts about inclusion and collaboration. “Don’t try to help me feel included,” they said. “If I’m actually being included and supported, I’ll feel it without you making an effort to perform it. If I’m not, then trying to make me feel included is dishonest.” They explained that meaningful inclusion means having power, not just being invited into a space. “I watch how people react when I challenge them. That tells me everything.”
Looking ahead, Alyssa hopes the future of AAC includes both technological and social progress. They’d like to see
more access methods,
non-gendered voices,
and better multilingual supports.
But what matters most is universal access to literacy and communication, not just new tools. “I want everyone to be able to try different communication modalities to find out what actually works for them,” they said.
To professionals just entering the AAC field, especially autistic or disabled ones, Alyssa offers this advice: “Start with what makes no freaking sense. Interrogate the evidence. If a study shows a method works to achieve a goal the user doesn’t even have, that’s not a good outcome.”
Before we wrapped up, Alyssa shared a final insight that many clinicians might not expect, but is common among autistic AAC users: “Speech therapy didn’t help me. I found AAC through community, not professionals. That story is familiar in my circles, but still surprising to many researchers. That disconnect matters.”
Alyssa Hillary Zisk will be presenting at this year’s NWACS Virtual Fall Conference on September 28, 2025: Neurodiversity Affirming AAC: Supporting Long-Term Goals and Continued Scripting for Gestalt Language Processors. Their presentation will explore
how we can better support long-term communication development,
challenge entrenched assumptions,
and affirm AAC users as the experts of their own experience.
Register now and join us for an honest, challenging, and deeply meaningful conversation about what truly neurodiversity-affirming AAC can look like.
