Letter to the Editor: The Lived Experience of autistic Adults- ABA and the Inconvenient Truth

As a professor and a social worker, when a student comes to me expressing concerns about something that I teach, at minimum I should listen to their concerns and entertain the possibility that they have a point worth consideration on my part.

Last fall, when a student on campus, who self-identifies as an autistic activist, asked to meet with me to discuss their concerns about how “autism” was being taught on our campus, I accepted the offer. Their concerns centered on classroom teaching that equates autism with “abnormal development” or “abnormal neurology” and the teaching of applied behavior analysis (ABA) as a gold standard practice to “help” autistic kids look and act “normal.” ABA is commonly referred to as “conversion therapy for autistics” by autistic activists.

I was predisposed to accepting the request to meet because of my 30-plus years connected to the intellectual and developmental disability services and advocacy systems. I am well aware of the prominence of behavior management, under all of its various names and incarnations, in the lives of children and adults with intellectual and developmental disabilities. I also know how prevalent sexual and other forms of interpersonal violence is among this group of people. And, how compliance-based training makes people easy targets for such victimization. People are conditioned to comply with the directives of others, to accept unwanted touch, to defer to the needs and preferences of others, and to suppress their natural instincts for self-protection.

I mostly listened to their concerns and reasoning. After all, the student was advocating for change based on their own lived experience, and the collective experiences of many autistic adults, who are telling allistics (non-autistics) that their experience with ABA was physically, psychologically and emotionally painful, and it has had lingering negative consequences to their mental health and well-being. I tried to offer support and encouragement, knowing that unrecognized and unacknowledged neuralism and ableism on our campus would likely prevail. Afterall, most people on our campus fail to recognize MavPODS as deeply ableist, so how likely is it that the campus-community would seriously entertain a conversation about how we “teach autism.”

I tried to imagine being an autistic student sitting in a class and being assigned readings and videos, and having to listen to your professors talk about your neurology, your mindbody as being abnormal, deviant, damaged or referred to as “special.” I tried to put myself in the place of a student in the classroom who experienced ABA (or any of its derivatives), knowing the harm it caused you, your peers, and the larger autistic community. I imagined autistic students wondering: Will my critical questioning be tolerated? Will my lived experience and the lived experiences of two-generations of autistic folks, speaking out against this practice, be acknowledged, and better yet, honored? Will students learn that ABA is not a cultural-affirming practice for autistic folks. At minimum, will students learn that there is an international movement to ban such practices led by autistic adults who as children, against their free will, were subjected to ABA? Will students learn that the autism industrial complex is a multi-billion-dollar industry that is so financially lucrative for providers that private equity firms are getting into the “autism business.” The answer to these questions is: “No, probably not.” 

How many people on this campus took the time to hear Dr. Nick Walker, Professor of Psychology at the California Institute of Integral Studies, when she spoke on campus in the spring and fall of 2022 about the neurodiversity paradigm and autistic empowerment? Or read Dr. Walker’s book “Neuroqueer Heresies” — a book often referenced by autistic activists? Or read other literature, listened to podcasts, or watched videos created or endorsed by the autistic community to further their own understanding of the issue?

It is easy to focus on the messenger and the manner of communication or engagement as a way to dismiss or ignore the larger issue. History is fraught with oppressed people being told by more powerful and privileged people to “behave,” “mind their station,” to “not rock the boat.” However, this is an academic institution, and as such we have an ethical and an intellectual obligation to critically question and challenge status quo thinking, policies and practices. A legitimate concern has been raised. Before flat out dismissing autistic activists and their concerns, we should be thinking and acting like an enlightened, critically questioning community of learners. The least we can do is step out of our academic or professional paradigm and educate ourselves.

If “Neuroqueer Heresies” is too academic for you, consider reading “I will Die on this Hill: Autistic Adults, Autism Parents and the Children Who Deserve a Better World” by Meghan Ashburn and Jules Edwards (an Indigenous autistic woman and mom to autistic children). For those totally unfamiliar with this issue, listen to a news story that aims to present “all sides,” like the PBS segment “The Battle Over Autism ‘Therapy’ ABA” (October 7, 2022), to help you to better understand the issue. Although, be mindful that not “all sides” are subjected to the mindbody altering practice. Thus, from an equity and justice standpoint, we must ensure we center the people with lived experience in our collective conversations.

I am not autistic. This is not my personal fight to fight. Yet, it seems wrong to sit on the sidelines when students get gaslighted for speaking their truth. This is the same truth that an international community of autistic adults are telling. Perhaps it is time that all of the allistic students, academics, researchers, experts, professionals, teachers, therapists and administrators listen. It’s the least we can do as an “innovative, student-centered learning community that values: integrity, diversity, access, responsibility and excellence.”

Nancy M. Fitzsimons

Professor, Research Graduate Faculty