In the autistic community, we often hear the phrase “nothing about us without us.”
Dr. Doreen Samelson speaks at Catalight’s EYI conference in Walnut Creek, California, in March, 2024.
On its surface, that seems like the ethical standard that those of us who are not autistic should commit to. It feels respectful for non-autistic clinicians, educators, and researchers like me to take our lead from autistic people. And bringing autistic advocates to the table is doable, as there are plenty who have the willingness and ability to lead. In fact, not doing so seems ableist.
That said, if we look beneath it all, strictly adhering to “nothing about us without us” may not be in the best interest of all those on the wide-ranging autism spectrum and those who care for them. In fact, if we’re talking about empowering the voices of the entirety of the community, outside advocacy is necessary for those who require round-the-clock support and significant care. If we paint everyone within this heterogeneous population with a broad brush, we’re leaving those with the most needs behind.
I am a physically disabled person and a wheelchair user. I identify as disabled and usually use identity first language. I travel and speak at conferences and have had the opportunity to advocate for many issues related to wheelchair users like me. So, what does this phrase, “nothing about us without us,” mean for me and the physically disabled community?
Before I can answer that question, there are some other important questions I need to ask: Do I really represent the broad, varied experiences and needs of the diverse population of physically disabled people? Do I represent quadriplegics? Should I place myself in a position to speak for someone who needs 24-hour assistance to do physical activities like eating, dressing, or toileting when I can manage these personal tasks on my own? Can I speak for someone with a fast progressive disease like amyotrophic lateral sclerosis (ALS) when my own condition is very slowly progressive?
I follow a number of people on social media with ALS who refer to themselves as “ALS Warriors.” While I rarely think about a cure for myself, many ALS Warriors think about a cure every day. The truth is my disabled experience is as different from someone with ALS as the experience of an autistic person with a PhD is to someone with autism and severe/profound intellectual disability.
For me, “nothing about us without us” is specific to people whose disability experience is close to mine.
I rarely hear this perspective from autistic advocates either at the conferences I go to or in the articles I read. What I hear is articulate, educated autistic advocates like the medical student I listened to at a conference last year suggest that they speak for the autistic population. Some even going so far as to say parents of autistic children “can’t speak” for their autistic children because they themselves aren’t autistic.
This begs the question for autism researchers and clinicians like me, ‘Who does the phrase “nothing about us without us” refer to when considering the needs of significantly disabled autistic people?’ If the data about severe autism is correct, almost one-third of the autistic population falls into the category of profound autism. It is beyond the cognitive abilities of individuals in this group, whose severe disability includes minimal language, to understand the phrase “nothing about us without us.”
As a disabled person and advocate, I think I must ensure that I am not speaking for people whose disability experience is very different from mine. Similarly, autistic people who are able to communicate and understand the phrase “nothing about us without us” shouldn’t speak for autistic people for whom this phrase is meaningless. Instead, I propose that for severely disabled autistic people, we broaden the phrase “nothing about us without us” to include parents. This will not happen unless autistic advocates recognize that they cannot speak for the entire autistic population and acknowledge that parents should be included in “nothing about us without us.”
Parents and caregivers are the people who are there at 3 a.m. when a profoundly disabled, non-verbal autistic person is having a very bad night, is not sleeping, and has become aggressive. Unfortunately, in the push by some autistic advocates to speak for the entire autistic population, caregivers are being left out of “nothing about us without us.”
My message is this: as disabled people, we should be careful about who we represent. In extremely heterogeneous populations like the autism community, we need to ask what “nothing about us without us” really means.
Doreen Samelson, EdD, MSCP, is the Chief Clinical Officer of Catalight, a nonprofit that provides access to innovative, individualized care services, clinical research, and advocacy so people with developmental disabilities can choose their path to care. Samelson leads the organization’s behavioral health research team, focusing on promoting families’ overall well-being.
