The Great Listening Project: When Researchers Finally Asked the Right People the Right Questions (a/k/a: What Happens When You Actually Listen To Autistic Adults)
- David Ruttenberg
- Jul 8
- 6 min read
<5 minute read
Copyright © 2018-2025 Dr David P Ruttenberg. All rights reserved.
How 14 autistic adults changed the game by teaching researchers to speak their language—and why this conversation was 20 years overdue
Picture this: You're designing a car, but instead of asking drivers what they need, you spend decades interviewing mechanics about engine parts. Sounds ridiculous, right? Well, that's essentially what autism research has been doing for years—studying autistic experiences without actually listening to autistic adults.
Enter the game-changer: a groundbreaking consultation study that flipped the script and put autistic voices at the center of the conversation. Buckle up, because this research detective story is about to reveal why the most important discoveries sometimes come from simply asking the right people the right questions.
The Revolutionary Idea:
What If We Actually Listen To Autistic Adults?
Here's a radical concept that somehow took decades to catch on: What if we asked autistic adults about their own lived experiences?
This thesis employed something called Consultations and Patient Public Involvement (PPI) methodology—basically a fancy way of saying "let's include the people who actually live with this stuff in the research process". The goal? To understand autistic adults' sensory, attention, and mental health concerns by letting them tell their own stories in their own words.
The approach was revolutionary because it aimed to amplify autistic voices rather than impose researchers' assumptions about what matters most. Think of it as trading a monologue for a dialogue—and the results were nothing short of eye-opening.
The Cast of Characters: Meet the Real Experts
Fourteen autistic adults aged 16-59 became the stars of this research show. These weren't just study subjects—they were collaborators, consultants, and co-creators of the research language that would follow.
The setup was beautifully simple: five online consultations where participants could speak freely about their lived experiences with sensory sensitivity, attention challenges, and mental health concerns (like anxiety and fatigue) in academic, employment, and social settings. No leading questions, no predetermined answers—just authentic conversation about what really matters...to them.
The Great Translation Project: From Researcher-Speak to Human-Speak
Here's where things get really interesting. The consultations weren't just about gathering data—they were about creating a new vocabulary that actually made sense to autistic adults.
The researchers started with 100 questions (talk about overwhelming!) but quickly realized this was way too much. So they hand-picked 17 key questions organized into six themes. But here's the kicker: participants didn't just answer these questions—they rewrote them.
The "Aha!" Moment: Language Matters
One of the most fascinating discoveries was how much language matters. For example, when researchers asked a complex question about sensitivity and distraction, a 20-year-old participant suggested simplifying it to: "What things are you sensitive to at your job?" or "What types of noises bother you at school?"
This wasn't just about making questions easier to understand—it was about respect, accessibility, and genuine inclusion. The participants were essentially teaching the researchers how to communicate with their community.
The Word Detective Story: Cracking the Code of Autistic Language
The consultations produced something remarkable: a treasure trove of authentic autistic language that researchers had never properly documented before. Using sophisticated analysis software, the team identified:
22 "Common Words" mentioned 10 or more times across all consultations
22 "Important Words" unanimously approved by all participants
127 "Potentially Offensive" words that researchers had been using without realizing their impact
The numbers tell a compelling story: these common words were mentioned 583 times total, with 297 expressing negative sentiments—that's 50.9% of all expressions. This wasn't just casual conversation—these were deeply felt experiences being shared.
The Top Hits: What Really Matters to Autistic Adults
🥇 "Social" - The Champion of Challenges
Mentioned 75 times, "social" topped the charts—not because autistic adults don't want social connection, but because social situations often become sensory minefields. As one 29-year-old participant explained, she "really doesn't like going out to loud concerts but can attempt going to smaller bars if it's not too crazy".
🔊 "Sound-Sensitivity" - The Sensory Heavyweight
Mentioned 61 times, sound sensitivity emerged as the biggest sensory concern. A 30-year-old woman captured it perfectly: she's "distracted by every single kind of noise. It's one of the biggest things that impacts me throughout my day".
😰 "Anxiety" - The Emotional Reality
Mentioned 56 times, anxiety wasn't just a side effect—it was a central experience. One 20-year-old participant described how noisy, well-lit rooms made him so anxious he'd "have to just run back home" and check the door multiple times to feel safe.
🎯 "Distraction," "Focus," and "Interruption" - The Attention Trilogy
These three words, mentioned 54 times combined, painted a picture of constant cognitive battles. A 33-year-old woman described it as "getting derailed" and feeling "like a wire without insulation"—her energy and focus just getting "sucked out".
The Tech Wish List: What Autistic Adults Actually Want
Here's where the story gets exciting. When asked about technology solutions, participants weren't asking for complicated gadgets or sci-fi inventions. They wanted two simple things:
🚨 "Alerts" and 🧭 "Guidance"
Mentioned 58 times together, these were the most desired technological features. A 27-year-old woman explained it perfectly: "alerts and guidance to prepare me for distracting and anxiety-producing stimuli...would be incredibly useful. I get jumpy when I hear loud noises...having an alert if something might upset me would definitely be more helpful".
This wasn't about changing autistic people—it was about changing environments to be more accommodating of autistic people.
The Plot Twist: Creating a New Research Language
The most revolutionary outcome wasn't just the data—it was the creation of an entirely new research vocabulary. The consultations identified potentially offensive terms that researchers had been using unknowingly and replaced them with authentic, autistic-voiced alternatives.
This linguistic revolution became the foundation for follow-up questionnaires that would reach hundreds more participants (check back here for an upcoming blog post). Instead of imposing researcher assumptions, the study would now speak in the language that actually resonated with autistic adults.
Why This Changes Everything
These consultations weren't just nice-to-have conversations—they were game-changing research methodology. Here's why:
🎯 Authentic Insight
For the first time, researchers were getting unfiltered access to how autistic adults actually experience and describe their world.
🛠️ Better Tools
The language developed here would inform questionnaires, technology designs, and future research approaches.
🤝 Power Redistribution
Though not perfect, this approach began shifting power from researchers to the autistic community.
📊 Real-World Relevance
The findings directly informed practical technology solutions that autistic adults actually wanted.
The Ripple Effect: Setting the Stage for Revolution
These consultations became the foundation for everything that followed in the thesis. The 22 Important Words became the vocabulary for larger studies. The insights about alerts and guidance shaped technology prototypes. The understanding of social and sound sensitivities informed intervention designs.
Most importantly, this approach demonstrated that authentic inclusion isn't just ethically right—it's scientifically superior. When researchers actually listen to autistic adults, they discover solutions that work in the real world.
The Future is Collaborative
While these consultations had limitations—they were still consultation rather than full co-production—they represent a crucial step toward more inclusive research. The future of autism research isn't about studying autistic people; it's about researching with autistic people.
The 14 participants in this study didn't just provide data—they transformed how research gets done. They proved that autistic adults aren't just subjects to be studied; they're experts in their own experiences who can teach researchers things they never would have discovered alone.
The Bottom Line
This consultation study reveals a simple but profound truth: the best research happens when you ask the right people the right questions in the right way. These 14 autistic adults didn't just share their experiences—they revolutionized how we think about sensory sensitivity, attention, and mental health.
Their words became the building blocks for technology solutions, their insights shaped research methodology, and their collaboration proved that authentic inclusion isn't just nice to have—it's essential for creating meaningful change.
The next time you think about autism research, remember: the most important discoveries often come not from complex theories or fancy equipment, but from simply listening to the people who live the reality every day.
This research represents a fundamental shift toward authentic collaboration and inclusive methodology. The future of assistive technology isn't just being designed for autistic adults—it's being designed with them.
Citation:
Ruttenberg, D. (2025). Towards technologically enhanced mitigation of autistic adults' sensory sensitivity experiences and attentional, and mental wellbeing disturbances. Thesis Submitted in Fulfilment of the Requirements for the Degree of Doctor of Philosophy. University College London. 1-828. https://bit.ly/4lzyWFD
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