Structural discrimination is discrimination that results from the policies, rules, institutional practices, funding priorities, decision-making systems, and built-in assumptions of organizations or systems. It does not require any person to intend harm. It occurs when those structures consistently disadvantage a protected or marginalized group.
That is the definition at the center of Chapter Four of When Autistic Kids Grow Up. When federal research policies and practices consistently block physical health research for autistic adults, this is not just a “gap,” a “barrier,” or a “lack of fit.” The word that fits is structural discrimination.
This is different from the everyday understanding of discrimination. Most people hear “discrimination” and think of individual bias: one person, or a group of people, intentionally treating another person unfairly because of who they are. That kind of discrimination is real. But structural discrimination is broader. It can happen even when individuals believe they are being neutral, because the harm comes from the system’s rules, incentives, exclusions, and routines.
That distinction matters because even researchers often do not recognize structural discrimination when they are participating in it. They may know what interpersonal discrimination looks like. They may know what explicit exclusion looks like. But when discrimination is built into “how things are done”—into funding priorities, institute boundaries, review practices, program officer guidance, and assumptions about what counts as fundable science—it can look ordinary, neutral, or bureaucratic.
That is exactly why the research paper Mind the NIH-Funding Gap: Structural Discrimination in Physical Health-Related Research for Cognitively Able Autistic Adults is so important. The paper describes how a collection of NIH policies and practices worked together to bar, reroute, discourage, or make nearly impossible physical health-related research for autistic adults—even though autistic adults face serious physical health disparities, reduced quality of life, and shorter lifespans.
The issue is not one single person saying, “We do not fund autistic adults.” The issue is a system: public-facing policies that appear broad, internal funding priorities that are much narrower, institute silos that leave autistic adults’ physical health outside anyone’s responsibility, program officer guidance that tells researchers their work does not “fit,” and review structures that reward certain kinds of autism research while leaving physical health disparities in autistic adults without a clear funding home.
Together, those policies and practices produce a predictable outcome: the research that autistic adults need most—research on treating, adapting care for, and improving physical health conditions—is blocked or neglected. The paper found that, among NIH-funded studies on physical health-disparity conditions in autistic adults, none focused on improving the relevant physical health condition through interventions, programs, or services for autistic adults.
That meets the definition of structural discrimination: negative outcomes for a marginalized group resulting from the policies and actions of institutions, even when those institutions claim to be neutral.
So the question is not whether these policies and practices were real—at least at the time the paper was published. No one is denying that they were real. The resistance is to the word discrimination. People are willing to describe the barriers, the gaps, the misalignment, the lack of fit, the underfunding, and the bureaucratic problem. But they do not want to say what it is.
We should say it clearly because naming discrimination matters.
If we call it a “gap,” we can treat it like an unfortunate accident. If we call it “complexity,” we can pretend no one is responsible. If we call it “fit,” we can keep sending researchers from one institute to another while autistic adults continue to live with untreated, understudied, and poorly accommodated physical health conditions.
But if we call it structural discrimination, we are forced to confront the truth: the system itself is producing harm. And when the system is producing harm, the system has to change.
This matters for autistic lives because physical health is not separate from quality of life. Pain, insomnia, gastrointestinal distress, diabetes, obesity, cardiovascular disease, access barriers, communication barriers, and inadequate treatment are not side issues. They shape whether autistic adults can work, rest, connect, participate, survive, and flourish.
Autistic adults do not need a research system that keeps studying how to reduce autism. They need a research system that studies how to reduce suffering, improve care, extend lives, and support autistic people as full human beings across the lifespan.
That is why Chapter Four matters. It is not just about NIH funding. It is about whether we are willing to name structural discrimination when we see it—and whether we are willing to change the structures that keep autistic adults from getting the physical health research, care, and support they deserve.
Spectrum for Life Research 