Today’s guest author is Sarah Hamel
Sarah Hamel (she/her) is co-founder and Director of Strategic Initiatives at Autism Included, where she spends her time building a coalition of individuals and organizations passionate about inclusion for autistic students, particularly our youngest learners. She is always on the lookout for partnerships to expand the collective capacity for change. In addition, she continues to practice as a Speech Pathologist specializing in autistic learning and development including AAC. In her free time she enjoys making music, writing, and listening to funny podcasts.
Content Warning: This article discusses the restraint, torture, and death of children
Ensuring safety in our schools has become a focus over the past few years, typically discussed in terms of external threats such as gun violence. However, for many special education students, it’s not active shooters or bomb threats they need to concern themselves with- it’s their teachers and therapists.
In 2009, the congressional watchdog agency Government Accountability Office (GAO) examined restraint and seclusion in schools, concluding that “vulnerable children are being abused” and documented cases “where students were pinned to the floor for hours at a time, handcuffed, locked in closets, and subjected to other acts of violence. In some of these cases, this type of abuse resulted in death”. The report indicated that at least twenty deaths had occurred in the past twenty-six years, including deaths of children as young as four and those who had not initially been aggressive or in immediate danger themselves.
Unfortunately, a 2019 report from the same office showed this problem still plagues us. The GAO urged the U.S. Department of Education to take “immediate action” to address the underreporting of restraint and seclusion in the nation’s schools, characterizing the prevalence of these events as ‘chronically underreported.’
Their work built on a 2013 Education Week Research Center analysis that found that 1 in every 100 special education students had been restrained. For perspective, the school year examined in the analysis estimated that 70,000 children were restrained over 200,000 times. These numbers are staggering but also, unfortunately, almost certainly low. These two reports showed, respectively 70-80% of districts, which included many of the largest in the country, misrepresented their R&S data in some way. For example, many districts that reported zero incidents in a given year admitted that they had no procedure to collect said data.
The actual number is, at this point, unknowable because the most at-risk children are non-speaking in segregated educational environments. None of the children in the room can report what’s happening, and the staff believes they are acting responsibly. I have witnessed entire classrooms of children strapped into chairs for hours per day, not just in a single district. This is a pervasive program in segregated settings.
I know this might be hard to believe. Why isn’t there a public outcry if so many districts abuse children this way? Who is doing this to these children, and why?
The short answer is culture. The long answer, I would find, is history. We have a long, ugly history regarding the systematic treatment of autistic children. These historical perspectives are the seed that grew into how we view autism and autistic people today.
A ward in the Am Spiegelgrund clinic in Vienna in the 1940s.
In her book Asperger’s Children: The Origins of Autism in Nazi Vienna, Edith Sheffer reveals the origin of the “high or low” functioning labels we ubiquitously associate with autism: that some autistic people are worth trying to salvage, that they are intelligent and can be molded into productive members of society. And some, on the other hand, deserve to be murdered. This isn’t hyperbole or drama; newly published clinical records describe Asperger’s work on a committee that sent dozens of disabled children to their deaths by either gassing, overdose, exposure, or starvation at the Am Spiegelgrund clinic. As Nazi ideals grew in popularity and influence, he would publicly speak and publish on the need to send the “most severe cases” to the clinic because those children could not fit into the “organism of the social community.”
We continue to believe some children need to be segregated and trained to fit into this “organism of the social community.” Regardless of a child’s support needs, narratives of “high and low-functioning autism” are harmful because, again, they measure the success of interventions- and the success of these children as human beings- on a scale of conformity. Functioning labels are not the only old idea infecting our current practices; thirty years after Asperger came the father of modern autism treatment, Ole Ivar Lovaas. The program he developed is the #1 most prescribed “treatment”, Applied Behavior Analysis or ABA. The same mind that produced this program had another famous intervention: gay conversion therapy. Doctors send families to these centers exponentially more often than any other therapy. Our tax dollars pay for these practitioners in our schools.
In her article Disturbing Behaviors: Ole Ivar Lovaas and the Queer History of Autism Science Margaret Gibson explores the ideological parallels between how Lovaas recommended “helping” these two populations; he would describe feminine behaviors in boys as well as autistic behaviors in children as deviations requiring correction. He saw gayness and autistic-ness as simply a collection of behaviors that we in a polite society could shape through the environment.
In January 1974, Lovaas stated in an interview for Psychology Today:
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose, and a mouth – but they are not people in the psychological sense.
One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
If we are going to do better for autistic people, we have to look in the mirror. As a country, we spend upwards of two billion dollars a year on therapy based on the theory that autistic people aren’t people.
Based on the idea that success in therapy means making autistic people fit into the “organism of the social community.”
If you are reading this as a medical professional, this cultural understanding is baked into our training. If you are reading this as a parent, know about nearly every professional advising you on how best to “treat” your autistic child. This history informs their understanding of your child- this is especially true for behaviorists.
This history has promoted a culture that leads people to believe we must teach autistic people to fit into a society that neither desires nor understands them. We need to consider the restraint-related deaths of children not as random events but as a direct result of the cultural milieu of the adults whose actions end their young lives. The way these children learn, communicate, and even express joy is a pathology. Autistic psychopathy, as Asperger would describe it.
Any endeavor for social change must start with the painful process of reflection. What do you really think of your students’ autism? Of your child’s autism? How does their autisticness make you feel?
Are you afraid of their differences? Do you believe they are whole?
You have a choice. You can indulge in the Aspergian narrative of conformity at all costs, the Lovaasian puzzle pieces. You can follow the establishment, or you can follow what your own long-buried instinct might have told you all along: something is terribly wrong with what we do to these children. We can learn to take the lessons from this ugly past and start the difficult work of healing.
You don’t have to listen to me, but I hope you’ll consider listening to them.
