Communication, agency, and messiness: what systems keep missing about autism
Hari Srinivasan on being a minimally speaking autistic neuroscientist, autism's representation in education, media, and research, and the Possibility Mindset
Dear Reframers,
In his keynote, “Neurodiversity and the Architecture of Inclusion” at the United Nations’s celebration of World Autism Awareness Day, Hari Srinivasan emphasises that research that samples the most accessible autistic participants cannot be called inclusive. He urges researchers to include undrerrepresented autistic populations, because development policies reflect the data and evidence we generate. In his own words:
“Across many contexts, research tends to sample autistics who are easiest to recruit, assess, and retain in structured studies. When methods depend on speech fluency, rapid response, or sustained regulation, individuals with complex support needs become systematically harder to include. Neurodiversity 2.0 calls for expanding methodological design in research so that the full spectrum can shape the evidence base that informs policy.”
Hari is a neuroscience PhD candidate at Vanderbilt University and a summa cum laude graduate of University of California, Berkeley. His research focus is on sensorimotor systems in autism. He also engages in meta-science, examining how research methods, assumptions, and inclusion practices shape what becomes accepted scientific knowledge. He contributes to science leadership and disability advocacy through service on advisory committees and nonprofit boards focused on autism and disability inclusion. His writing has appeared in outlets such as Time, Newsweek and Fortune. Across research, writing, and advocacy, he focuses on expanding who gets included, who gets heard, and what counts as evidence.
April is Autism Awareness, Acceptance, and Appreciation Month, and there’s no better time to publish Hari’s insightful interview with Reframing Disability.
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“When you communicate differently, difference is often mistaken for limitation”
“My disability impacts me on the communication, fine motor, sensory and movement issues, as well as my health,” Hari tells me via email. “I do have some speech which is improving, but I still primarily rely on TTS (text-to-speech) to communicate. Navigating an imprecise body and these other challenges in turn feed into high levels of social anxiety.”
Autism, he says, is a part of his existence, just as excelling at academics, being a journalist, student instructor, and inclusion advocate.
Doesn’t that seem like the story of a super successful professional?
Yes!
But Hari’s early education experiences were challenging. His school system did not know what to do with him and wasn’t willing or patient enough to dive deeper to unearth his actual potential.
In fact, as a minimally speaking autistic person, he wasn’t expected to go to college.
“The system often assumes that if you did not show significant improvement during the early intervention years (ages 3 to 5) you are never going to improve,” Hari says. “As a result I spent my entire elementary education in low-expectation classrooms focused more on babysitting than learning.”
A hard-fought-for access to mainstream education in Grade 8 was a turning point in unlocking his potential.
He shares more about his life in this edited interview—
[ID: Hari, a young man with brown skin and short dark hair, is wearing a white lab coat over a sky blue shirt and dark blue striped tie. His lab coat has his name embroidered in black on one side and Vanderbilt School of Medicine on the other. With his hands in his pockets, Hari is standing in the corridor of a building and smiling into the camera.]
Who is Hari as a person?
There’s no clean story there—my disability is messy, and many days are simply hard. I’m a thinker with a very deep intense inner world — I experience the outside world intensely too — and I’m still figuring out how to bridge the two. What grounds me is a mix of science and philosophy: shaped by the Bhagavad Gita’s insistence that change is the only constant and Sri Sathya Sai’s —help ever, hurt never. I’m a neuroscientist and a writer who loves ideas, but I don’t want ideas to float above people.
Growing up, how did people’s misunderstandings about you shape your opportunities, and you?
When you communicate differently, difference is often mistaken for limitation, and systems quietly lower their expectations—shaping what I was offered and what I had to fight for. Living inside those gaps taught me where rigid, binary systems fail, which is why my work focuses on nuance and redesigning the table itself, not just asking for a seat.
What helped you find your way as a student and then a researcher?
Access to communication, education and effort—along with what looks like “luck” but really meeting people who created the right conditions—made the difference. Over time, I realized this reflected something broader, which I call a Possibility Mindset [linked to preprint] – a framework that starts not from “can you do this the standard way?” [but] “how much room to move there is within the system which allows for variation and allows your strengths to show up”.
A big part [of my success] was intentional planning. It requires thinking carefully about how to make environments work for me, and I don’t mean just standard examination accommodations like extra time. For example, in my graduate research, I mentor undergraduate research assistants who handle many of the “social-facing” parts of running my research study like scheduling participants, setting them up with equipment and wearables, or giving verbal instructions.
This requires thinking ahead about what gaps (where disability hits barriers) need to be filled in, working closely with your professors, and being explicit about what kinds of support makes the work possible as well as what you bring to the table. I’ve learned that many people genuinely want to help, but they don’t always know how. You have to work with them to explore what’s possible. And that process has to start with a Possibility Mindset—believing that there is a workable path, even if it doesn’t look like the default one.
In the spaces that you study/work in now, what do people around you usually need to unlearn and relearn about autism and disability to be able to engage with you as they do with anyone else?
I don’t fit the typical profile of a college-going autistic person, and in many spaces I’m the first of my kind—nudging people to unlearn the idea that someone can be “too disabled” to contribute meaningfully. What they relearn, is what’s possible when environments are designed differently.
What do higher education institutions need to do to make their spaces and policies welcoming for autistic students? How far along have they come?
In the U.S., the fact that someone like me can thrive in higher education speaks volumes about how much progress has been made. At the same time, that progress is deeply uneven—and to borrow from Robert Frost, we still have miles to go before we sleep. Higher education needs to move beyond minimum accommodations like extra time on examinations and towards designing environments that actively allow different students to succeed. I don’t know the Indian higher education landscape well enough to make strong claims, but I’m eager to learn. I’d welcome opportunities to think together about how access and inclusion can continue to expand in Indian academic contexts as well.
What would you say to any minimally or non-speaking autistic who wants to find success in academic research?
I hope my journey comes across as aspirational, not prescriptive. I hope it shows that paths exist. But also know that this path will look different for each person. For many of us, this is the road less traveled. There may be no clear map, and often we have to make one our own. I’m a pathbreaker in the spaces I’m in now, with no role models—but I hope that’s changing, as more autistics with complex support needs begin entering higher education, particularly in the U.S., and hopefully increasingly in other countries as well in the future.
Looking back, I don’t think there’s much I would have done differently. At each stage, I was making the best decisions I could with the information and access I had at the time, in the system I was living in, and that’s all any of us can do. In the meantime, my advice is to follow your vision and curiosity, and to try to design a path that works with your communication style and nervous system rather than against them. And if you are looking for starter ideas on what to research, just look through articles I’ve written, each of them is an idea that needs to be researched. Pay attention to the questions that keep returning in your own life and observations. Many of my research questions began that way—as unresolved questions that deserved deeper exploration.
And if there are research projects going on that you know about, contact those researchers and see how you can be involved whether as a participant or in some community advisory roles (this is an increasing trend in the US and I hope it extends to other countries as well).
How do you usually see minimally speaking autistic people portrayed in the media? What’s missing and what’s misrepresented?
They’re often portrayed in extremes—either as tragic figures defined by loss, as inspirational symbols, or as a foil for character building for others.
What’s missing is agency, adulthood, and the reality that limited speech does not mean limited thought. I’ve written about this more fully in a widely read piece for the Disability Visibility Project, founded by the late Alice Wong, titled “A Boy Like Me.” [Editor’s note: read about meltdown-focused plot lines, ubiquitous noise cancelling headphones, unconscious bias and more]
What responsibility do journalists have when interviewing autistic people, especially those who communicate differently?
Journalists have an ethical responsibility to examine their assumptions before they ever ask a question. That means not carrying hidden beliefs about who is “too disabled” to speak for themselves, or whose words need to be filtered through that biased lens, or re-interpreted for others. This is also about power. Journalists— and others in professional roles—help decide whose voices/methods are treated as credible and what gets recorded as “truth.”
The disability community has long been pushing back against being framed as objects of pity, objects of spectacle/staring, or inspiration for others - where the non-disabled reader can walk away feeling their life is so much better. In addition, different communication styles must be treated as equally legitimate, not made palatable or familiar. The words and language used matter. The responsibility isn’t to turn autistic lives into inspiration stories, but to ensure autistic voices are heard as they are.
What issues within autism advocacy feel most urgent to you right now?
There are many, but a few are especially urgent. Autism research and services are still built around convenience profiles* creating a major inclusion gap and then treating partial evidence as universal truth. Adult outcomes and health inequities—especially diagnostic overshadowing **—remain serious concerns. Alternative communication methodologies must be treated as a civil right, not an add-on.
Want to understand convenience sampling and diagnostic overshadowing better? Hari explains:
*Convenience sampling means studying the people who are easiest to test and work with (usually individuals who can speak, follow standard instructions, tolerate long assessments, or fit familiar diagnostic profiles), then assuming their experiences represent everyone.
The problem is that when findings from this narrow group are treated as if they apply to everyone, large parts of the autistic population are left out—especially people with higher support needs, different communication styles, or intersecting disabilities. Over time, this creates a distorted picture of autism and leads to services and policies that don’t meet many people’s real needs.
In short, convenience sampling isn’t about who needs to be included—it’s about who is easiest to include.
**Diagnostic overshadowing happens when a person’s autism becomes the explanation for everything—even when something else is clearly going on. Instead of asking, “What else could be causing this?”, doctors/clinicians assume new symptoms are just “part of autism.” As a result, real medical or mental health issues can be missed, dismissed, or treated late.
For example, an autistic person in pain might have their distress labeled as a behavior problem rather than a medical issue. Anxiety or depression might be brushed off as “autistic traits” instead of conditions that need care. As autistic people age, new health concerns can be overlooked because clinicians stop looking beyond the autism diagnosis.
In short, diagnostic overshadowing means the diagnosis casts such a long shadow that other important health problems are harder to see—and that can lead to serious gaps in care.
Read
Hari’s published work, and appearances in the news to get a detailed look on his academic and non-academic work. His preprint “AI, Autism, and the Architecture of Voice” which may be of interest to minimal/nonspeaking autistics, especially those using AAC.
Watch
In his insightful presentation, Autism, science and everyday life Hari explains how the autistic body and brain work. Another video on his YouTube channel, “The body behind communication” is especially relevant for minimal/nonspeakers.
So proud of my colleague Aditi Sowmyanarayan who also spoke at a United Nations WAAD panel on inclusive classrooms and systems:
“A school that is truly inclusive, one where diverse learners thrive, is one that is built on the principles of presuming competence and building on strengths. When we begin to view diverse learners as learners who are capable of learning, and people who bring their unique strengths to table, we will stop viewing diverse learners as problems waiting to be solved.”
Listen
WAARC (Wellcome Anti-ableist Research Culture’s podcast, Cripping Research Culture asks the question: How can we make better working conditions for disabled staff in higher education?
ICYMI (In Case You Missed It)
In Reframing Disability’s previous issues, the story of One cm, a Luxembourg podcast that demonstrated practical disability inclusion, and the launch of the Global Directory of News Media Professionals. Check them out!
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