Like Robert Chapman, I worry that neurodiversity has not lived up to its promise. I too am frustrated that the word has in some circles come to denote employer initiatives to hire STEM-oriented autistic people alone. Such a narrow vision is a far cry from what Jim Sinclair, the movement’s founder, intended; Sinclair called for a neurodiversity that included all autistic people—and many with other neurological disabilities as well. A movement only about those with “special abilities” betrays Sinclair, Mel Baggs, and others without which neurodiversity would not exist.
But Chapman’s proposal to turn neurodiversity toward an expansive critique of “capitalist social relations” stands to worsen the problem of co-optation by exacerbating its true cause: the movement’s limited ability to secure material change. Despite neurodiversity’s cultural currency, we have won surprisingly few shifts in autism service-provision and research, the primary areas the movement emerged to target. This reflects our community’s reluctance to translate critique into actionable strategies for change. Such efforts are slow, painstaking, and frankly boring next to the social media campaigns and the rarefied academic critiques that have captured the attention of many. Our limited engagement with them, however, has opened the door for others to define what neurodiversity means outside the counterculture.
In many respects, the neurodiversity movement that Chapman criticizes is one I don’t recognize. Chapman describes a movement that sits triumphant, having “won many of its demands.” To illustrate this, Chapman points to an organization I co-founded and ran for ten years—the Autistic Self Advocacy Network (ASAN)—and cite our successes “halting federal contractors from paying autistic people below the minimum wage” and fighting contingent electric shock at the Judge Rotenberg Center. But it is a mistake to attribute these two achievements—and implicitly, other ASAN policy successes—to neurodiversity activism rather than to plain old disability rights work.
Having organized the campaign to force the Obama administration to include disabled people—autistic and otherwise—in its executive order mandating a $10.10 hourly minimum wage for federal contractors, I can attest to the role of the other major disabled-led organizations we worked with. Organized labor also played a role, standing in solidarity with us. But relatively little help came from the grassroots of the neurodiversity movement. And though neurodiversity activists do contribute meaningfully to the fight against the Judge Rotenberg Center, there we join a campaign that old-school disability activists have been waging since the 1980s, well before the neurodiversity movement existed. While I am grateful for Chapman’s acknowledgment, my colleagues and I secured these victories as disability-rights advocates, not neurodiversity ones.
Distinguishing between neurodiversity and disability rights activism is not a matter of credit attribution. The distinction matters because it speaks to the different culture of advocacy in the two movements. Disability rights activism has generally focused on modifying law and policy through lobbying and litigation, often failing to secure corresponding cultural shifts. Neurodiversity activism has struggled with the opposite problem. While the movement has secured cultural recognition and helped frame neurological disability as identity, it has been largely unsuccessful in shifting public policy and clinical practice.
Indeed, thirty years after neurodiversity’s founding, applied behavioral analysis (ABA)—with its focus on rendering autistic people “indistinguishable from peers”—dominates autism service-provision more than ever. Even families convinced by our criticisms of ABA and other intervention modalities that seek to make autistic people look and act “normal” struggle to find alternatives—and we are generally unable to recommend them, having not done the work to build and validate our own methodologies. Exploiting the gap, ABA providers are now preparing to develop (and presumably market) “Neurodiversity-affirming Applied Behavioral Analysis,” combining our language with their interventions. Here is co-optation with a vengeance.
In the realm of research, things look scarcely better. Even as the U.S. federal government celebrates the newly rebranded Autism Acceptance Month, the percentage of autism research funding dedicated to service improvement is just 4.9 percent—higher than 1 percent in 2008, but not by much. The percentage of research dedicated to the needs of adults is nearly identical, moving from 5 percent to 4.3 percent. Again, a rhetorical shift was not accompanied by material change.
The stagnation stems from a lack of the kind of activism that Chapman criticizes: targeted advocacy focused on measurable change within existing systems. While Chapman frames the explicitly anti-capitalist politics of “Neurodivergent Power” as a novel alternative to an incrementalist and allegedly dominant “Liberal Neurodiversity” approach, I see neurodiversity advocates today primarily discharging their energies in exactly the way that Chapman favors, with limited results.
For example, Chapman points to the 2021 campaign against Spectrum 10K, a study that sought to collect genetic information from thousands of autistic people to study autism causation. Driven by concerns about eugenics, the autistic community won a temporary pause in the study. Chapman takes such activism as a model for Neurodivergent Power. But the Spectrum 10K pause did not change the broader pattern of autism research funding. Our community should certainly continue to engage in such grassroots mobilization (which, far from being new, has a long history in our movement). But we shouldn’t delude ourselves: real change requires a complementary willingness to step into the halls of power and direct public funds. Both insider and outsider approaches are needed. Emphasizing only the latter cedes space to those who don’t share our values.
When I was at ASAN, we appreciated that we could count on the neurodiversity grassroots to mobilize in response to some new outrage from Autism Speaks—but we were less confident that we could count on that same grassroots to send in public comments on a regulation or to contact their member of Congress about legislation to improve publicly funded services. For those mundane tasks, we could rely only on the disability rights community. This disparity meant that we made more progress fighting subminimum wage and institutionalization than advancing neurodiversity-specific priorities like freeing autistic three-year olds from forty hours a week of behavioral intervention.
I do not wish to undersell the importance of non-policy victories. ASAN and the neurodiversity movement’s work to date have helped change the conversation on autism, creating an expectation that autistic people should be in the room rather than just the topic of conversation. By insisting that autism is not some alien phenomenon, we have laid the foundation for important gains. But our actual policy successes have overwhelmingly come in the more general realm of disability rights, whose culture of advocacy values the work necessary to achieve them.
Failure to change policy or build our own services ill-serves those members of our community with the most severe impairments. Most early intervention programs for autistic children are just as likely to emphasize eye contact or the suppression of stimming today as they were decades ago. Likewise, special education and long-term care services remain dominated by those who seek to rigorously enforce “typical” behavior at the expense of more meaningful goals. For the most marginalized among us, efforts to work within the system to secure tangible gains are a must.
Moreover, neurodiversity and disability rights have unique contributions to make that would not be encompassed by generic anti-capitalist politics. Consider a recent report from the left-leaning Center for Economic and Policy Research, which rightly raises alarm bells about the influx of private equity dollars among ABA providers. The combination of private equity, whose influence has been ruinous in other sectors, and ABA would seem to be a perfect example of Chapman’s point regarding the nexus between anticapitalism and neurodiversity. But the report largely takes as a given that in the absence of the profit motive, ABA represents a positive intervention for autistic children. Without a distinct neurodiversity argument, anticapitalism does little for us.
What’s more, there are risks to diluting our focus with appeals to more generic anti-capitalism. Historically, disability activists have found themselves in well-justified conflict with the organizations of the left. Much of the de-institutionalization of people with developmental disabilities in the United States was accomplished over the ardent objections of public sector labor unions, who sought to keep disabled people institutionalized because pay and benefits were better in institutions than in the community. Though less well documented, conflicts over restraint and seclusion in public schools have featured similar frictions between disability advocates and teachers’ unions reluctant to limit their members freedom to use measures we find abusive.
Chapman might argue that these movements fail in solidarity—or that they are simply not true anti-capitalists. But I find that material interests provide a more powerful explanatory framework than ideology. We should not be surprised that other movements are responsive to the interests of their constituents. I value collaboration between disability activists and labor. In fact, I have spent much of the last half-decade as a consultant to one of the country’s major unions, helping them build such coalitions. But I also have realistic expectations. Even though disability intersects with every other community, we should not expect anyone to advance our policy priorities with greater competence or vigor than we can do ourselves.
Liberal that I am, I am also skeptical that all of the problems we seek to solve can consistently be laid at the feet of capitalism. Though industrial capitalism played a major role in institutionalization in the United States, it is worth noting that a similar dramatic expansion in institutionalization took place in the feudal economic system of Tsarist Russia—and accelerated under the explicitly anti-capitalist regimes of the Soviet empire. Perhaps the segregation of disabled people is not so much a unique consequence of capitalism as it is a broader social problem that must be confronted under a wide variety of economic systems.
But even if I abandoned liberalism for the most revolutionary socialism, I would counsel against Chapman’s approach. I fear that Chapman’s Neurodivergent Power indulges the neurodiversity movement’s worst instincts, prioritizing expansive rhetoric over any discernible theory of action. I say we should temper the poetry of ideology with the prose of policy and research work. As Max Weber put it, “politics is a strong and slow boring of hard boards. It takes both passion and perspective.”
In recent years, I have come to believe we need a strain of the movement I might refer to as Practical Neurodiversity, operationalizing neurodiversity’s ideals in the service systems that too often dominate our lives. Under such an approach, we might work to reverse the dramatic expansion in insurance coverage for ABA our opponents have secured over the last two decades—or at least modify these policies to offer equal coverage for ABA alternatives. Similarly, a Practical Neurodiversity movement would seek to leverage the growing number of autistic researchers to revise or replace existing autism interventions and the outcome measures that guide clinicians to target the elimination of autistic traits. Such efforts would have many allies—many speech language pathologists and occupational therapists share our concern with the dominance of ABA and would welcome our critique, if translated into specifics. Practical Neurodiversity also entails further integrating ourselves into the broader disability rights movement, for the challenges we face are not unique to neurological disability.
We have a responsibility to build a movement capable of undertaking the work of incremental policy reform. The alternative is a neurodiversity movement whose cultural successes are never translated into real change. Neurodiversity’s greatest impact would then be diversity training programs and sinecures for a small number of us to opine in complex language, periodically producing some new jargon whose minting provides academic and social media fame. Meanwhile, the most vulnerable among us would continue to suffer with little pathway to inclusion or autonomy. We can and must do better.
