Autistic advocate Stephen Shore once said, “If you’ve met one person with autism, you’ve met one person with autism.” That expression, though exhausted from being over quoted, succinctly conveys the vastness of the autism spectrum. For those fighting for social justice for autistic people, this vastness is a challenge. What does it mean to represent autistic people—to speak for the full spectrum?
Robert Chapman envisions a new chapter for neurodiversity activism: “Neurodivergent Power.” Yet Chapman does not clearly explain what this approach will do differently to unite the full range of people who identify as neurodivergent, including people who have severely limited communication skills and intellectual or cognitive disability. Without careful reflection on what it takes to represent everyone’s interests, Neurodivergent Power risks reproducing the problems it wants to overcome.
This problem is evident even within the autistic community. The field of autism research and advocacy is crowded with different stakeholders: parents, allies, doctors, researchers, educators, therapists, and of course, autistic people themselves. Each group has its own set of priorities. Autism spectrum disorder itself incorporates a wide population of people with different skills, talents, and needs. Even more, how we define and diagnose autism has changed over time, expanding and contracting the autistic population; someone who is diagnosed today may not have been diagnosed decades earlier when the clinical criteria were narrower. And autism is a lifelong condition; people’s support needs change at each life stage. In short, the autism population is not a monolith, nor is it static. Given autism’s heterogeneity and its many stakeholders, who gets to speak for autism?
In my research, I have followed two autism movements that challenge popular understandings of autism. One is primarily composed of autistic adults who are pushing for autism acceptance and contend that autism is a natural human variation rather than a disorder. Their stance is essentially what Chapman calls “Liberal Neurodiversity.” The other movement is dominated by parents and practitioners who (wrongly) believe that vaccines “trigger” autism and that autism can be “reversed” with alternative and experimental treatments like specialized diets, parasite therapy, and hormone therapy.
In their advocacy, these movements find themselves competing for scarce resources. They are often at odds with each other. Autistic rights activists humorously recounted to me the time an angry parent hurled food at them while they were out protesting Autism Speaks, the most prominent autism advocacy organization in the United States, for challenging their cause. The best people to represent autistic people, they emphasize, are fellow autistic people. At first glance, this argument does not seem particularly contentious. But as one autistic participant observed, “A lot of [parents] don’t really seem to care what you have to say if they perceive you as being less affected by autism than their child.”
Meanwhile, parent advocates—specifically mothers—have fought long and hard to be recognized as experts on their children, as well as to oppose claims that they are the cause of autism. They continue to struggle to secure appropriate education for their kids and to navigate the meager services available for disabled adults. Understandably, then, parents worry that their children’s needs will be neglected if activists speaking for them do not fully understand their challenges. Some accuse autistic activists of being too independent to successfully advocate for those who require more support. One mother I spoke to resented the extreme differences she saw between her own child and an autistic activist who condemns efforts aimed at “curing” autism. “You can talk. You can wipe your own ass. You can get a job. What are you complaining about?” she remembers saying to him. “That is one of the hardest things in the autism community: adults who say they have autism and they don’t want to be cured,” she told me.
Every advocate wants a good quality of life for autistic people, but there are different interpretations of what that means and how it should be achieved. Even the two broad camps of autistic activism and parent advocacy are riven by deep divides and disagreements. Autistic people and parents of autistic children do not make up two cohesive groups: there are autistic people who demand inclusion, autistic people who pathologize autism, parents who support acceptance, parents who want a cure, people caught in between these different goals, and crucially, autistic people who are kept out of these conversations completely.
In short, autism advocacy is incredibly fragmented. It’s unclear how Neurodivergent Power, which calls for a complete overhaul of our economic and carceral systems, will navigate this complex field. One has to ask: Who are the activists that will join this revolution? Who will be able to meaningfully participate in this revolution? Chapman suggests that such an overhaul will resolve our structural social problems and therefore elevate the “multiply marginalized” whose interests tend to be neglected. But it’s not clear to me how this plan will do both simultaneously. The interests of the multiply marginalized cannot be assumed. They are owed representation—especially within a movement that claims to fight on their behalf. Autistic activists have claimed legitimacy and authority on the basis of embodied knowledge, but the autistic experience is not singular, of course; the most active autistic activists tend to be educated and possess strong verbal communication skills. While these activists wanted to include more people from across the spectrum, it was a huge challenge. Without a clear strategy for remedying this gap, who’s to say that even the most radical of movements won’t repeat this pattern?
The first step to achieving the aims of Neurodivergent Power must be creating a movement base that is truly inclusive of the most marginalized—those who require significant support, those who are poor, and those who are racial and ethnic minorities. Representing the heterogeneity of autism will also require allyship with parent advocates and other caregivers. We cannot turn away from the fraught reality that autistic minors and people who need intense support rely on other people to serve as proxies. Neurodivergent Power, as a movement, will not achieve social justice without first taking on the enormous task of being representative itself.
