What Should the Ratio Be? Rebalancing Autism Research for Respect and Reality
I’ve spent a lot of time reading autism research that starts from the wrong place. Not maliciously. Not even always consciously. But wrong, in the sense that it asks: What’s wrong with these people?
Not: What’s wrong with the system they’re forced to survive in?
That framing matters. Because it shapes not just the methods and conclusions, but the funding, the headlines, the therapies — and the public’s entire understanding of what autism is.
So here’s the question I want to pose directly:
What should the balance of autism research actually look like?
Right now, the vast majority of published autism studies — especially those in top-tier medical and behavioral journals — are deficit-based. They assume autism is a problem to reduce, a risk to prevent or a burden to manage. They describe us in terms of impairment, pathology and cost. And even when they try to help, they often measure success by how well we approximate neurotypical behavior.
That’s not progress. That’s just legacy, unexamined.
A More Honest Ratio
Here’s one possible rebalancing — not exact, but aspirational. A benchmark for where the field could move if it actually listened:
10–15%: Medical or deficit-based research
There is room for careful, respectful study of co-occurring conditions, sensory challenges, motor coordination issues and forms of distress that affect quality of life. But this work must be:
- Reframed around support, not normalization
- Collaborative, not extractive
- Grounded in autonomy, not compliance
Let’s be clear: this 10–15% is not a quota. It’s a generous maximum — and most current deficit-based research doesn’t meet the standard.
If it can’t center autistic wellbeing on our terms, then its rightful share of the field isn’t 10%.
It’s zero.
50–60%: Neurodiversity-informed research
This should be the center. Not the fringe. Studies that explore autistic wellbeing, identity, communication, community, environment, access, intersectionality and systemic barriers. Research led or shaped by autistic people — not just reviewed for optics. This is the work that can transform lives without erasing anyone.
25–30%: Transitional or reflexive research
There’s space here for studies that are in conversation with their own history. Research that tries to shift, that acknowledges its limitations, that names its institutional constraints. Not perfect, but moving. This category matters too — because reform doesn’t always happen in a straight line.
The Pressure Behind the Pattern
Of course, academic research doesn’t happen in a vacuum. It’s shaped by who funds it, what journals reward, how careers are built. And often, those systems incentivize pathology over possibility — deficit over dignity. That’s not just a problem of individual studies.
That’s a problem of structure.
But structure isn’t static. It shifts when enough people decide the old incentives no longer justify the harm they quietly perpetuate.
Why This Matters
Because research isn’t just academic. It’s a narrative engine.
And right now, it’s telling a story that too often leaves us out — or casts us as problems in our own lives.
A better ratio wouldn’t silence anyone. It would restore proportion. It would match the science to the stakes. It would ask not just what autism is, but what kind of future we’re building when we study it.
And maybe — just maybe — it would start to answer back.