Guest column by Xeno Washburne and Amber Blaylock | Autism Speaks and Penn's Neurodiversity Problem

In June of this year, Google announced a joint effort with Autism Speaks. Known as AUT10K, this project aims to create a massive database mapping the genome of autistic children and adults. The motivation of Autism Speaks is rather obvious and indeed can be found in the organization’s mission statement — “At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.”

Within the autistic community, the concept of a "cure" has been discussed at length. Most autistic people agree — autism cannot, and should not, be cured. Autism is an intrinsic part of an individual’s personality, a neurological configuration that affects a person on a fundamental level.   Its removal would mean a disruption of senses, thought structures, behaviors and interests so complete that it is difficult to see it as anything but death. Even assuming, for the sake of argument, that the much-vaunted cure is both possible and desirable, research into the genetic markers of autism will result not in a cure in the form of medication or treatment, but in the form of a prenatal test that will allow autistic fetuses to be selectively aborted simply for being autistic, something that has already devastated the Down’s Syndrome community.

And what if those of us being bred out have concerns about this future? Autism Speaks has no interest in hearing it. They have, after all, gone to great lengths to ensure the voices of autistic people have no role in their organization. On the Board of Directors made up  of 33 people, not one member is autistic, which is no surprise as the rules of the organization flat-out forbid it. The sole high-ranking autistic person, former science advisory board member John Elder Robison , publicly resigned his position in November 2013, a decision he ascribed to, among other things, the organization’s unrelenting belief in an autism "cure" and, more damningly, their complete failure to listen to his concerns. In his resignation letter, Robison wrote, “Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

And when autistic people do their best to speak out against the organization outside of its confines, Autism Speaks goes to great effort to shut them down. The organization regularly deletes autistic people’s criticisms from its Facebook wall, and on two separate occasions, it has even gone after autistic teenagers who parodied the organization. Moreover, Autism Speaks blocked the inclusion of the Schakowsky Amendment in the Autism CARES Act of 2014 . With an emphasis on reforming autism research — the same research funded by Autism Speaks — this amendment aimed to increase autistic involvement in research that purports to help people on the spectrum in the form of stakeholder advisory committees. Additionally, the amendment sought to relegate more autism research funding to issues key to autistic integration such as service provisions, supported employment and inclusive education, and provide greater support to racial and ethnic minorities, women,  adolescents and adults on the spectrum. Autism Speaks’ active and successful  lobbying against this amendment can only be read as a deliberate silencing of autistic voices and perspectives — which is ironic, given the organization’s name.

The complete and utter failure of Autism Speaks to serve the autistic community, however, runs much deeper. Consider the case of Simone Greggs , a mother of an autistic child whose position as walk events manager  at the organization was revoked after she requested day care  accommodations for her son. Although she withdrew her request and found alternative accommodations elsewhere, Autism Speaks refused to reinstate her position. But even this pales in comparison to the ways in which the organization overlooks and even defends the abuse and murder of autistic people. In an Autism Speaks’ promotional video “Autism Everyday,” Alison Singer, former Autism Speaks board member and founder of the Autism Science Foundation , talks about wanting to drive herself and her autistic daughter off the George Washington Bridge while her daughter is in the room. This rhetoric is sadly common amongst the parents involved in Autism Speaks. Such statements are far from harmless — over the last five years, more than 70 disabled people have been murdered by their caregivers and even more attempts have been made, such as the recent one on the life of Issy Stapleton . The voices that Autism Speaks promotes actively normalize these acts of violence.

All this leads to a rather dark conclusion — that Autism Speaks has no interest in improving the lives of autistic people. It is dedicated entirely to improving the lives of those without autism, who, it holds, are unfairly burdened by having to deal with people whose sensory and social experiences differ dramatically from their own, to the point where cold-blooded murder is an understandable, sympathetic response. Autism Speaks seeks not to change the future for autistic people, but to end it.

What does this all have to do with Penn? Unfortunately, entirely too much.

In June of this year, a study funded by Autism Speaks and orchestrated by Penn Center for Mental Health Policy and Services Research  director David Mandell , was published with a news release entitled “Lifetime Costs for Autism Spectrum Disorder May Reach $2.4 Million Per Patient, Penn Study Finds.” The implication of this release is obvious — autism is an expensive, undesirable condition, and research cures are cost-saving measures . Not, of course, that eugenics has ever been perpetuated in an effort to save the taxpaying public the cost of caring for the ‘lesser’ amongst them.

In addition, courses dealing with autism at Penn are alienating for autistic students. The course description for the "Neurobiological Basis of Autism," for example, reads, “This course covers the signs and symptoms of Autism Spectrum Disorder (ASD), such as their lack of language, eye gaze aberrations, deficits in joint attention, avoidance and inadequacies of social interaction, hand flapping, and self stimulating behaviors,” assuming that no autistic people will be taking the class and making autistic students feel fundamentally unseen and unwelcome.

Penn’s association with Autism Speaks and general attitude towards autism has had very real consequences for autistic people. In 2011, for example, doctors at the Hospital of the University of Pennsylvania  denied Paul Corby, a 23-year-old autistic man , a life-saving heart transplant. The cardiologist who made this decision, Susan Brozena , explained in a letter to Corby’s mother that "given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior” she recommended against the procedure. We understand the difficulty of organ transplant decision, but the focus on his autism and behavior, rather than on the success of the procedure, makes it clear that the hospital considers autistic existence inherently less valuable. It’s an opinion, unfortunately, that echoes strongly in the words of Ezekiel J. Emanuel, chair  of the Department of Medical Ethics and Health Policy at the University , who hopes to die at 75, lest he become too disabled for his life to be worth living. Ironic, given his noted opposition to euthanasia.

We call on the University of Pennsylvania to end its ties with Autism Speaks. We call on Penn Speaks for Autism, if it truly believes in improving the lives of autistic people, to listen to autistic voices, seek out autistic members and to stop using the imagery and icons of Autism Speaks. We call on the Biological Basis of Behavior Society to withdraw its support of Autism Speaks and to work instead with groups such as the Autistic Self-Advocacy Network that are run by and for autistic people. We call on the Biological Basis of Behavior Department to acknowledge the existence of autistic students and make clear and concrete steps to welcome us into the program by eliminating ableist preconceptions and othering language. We call on the History and Sociology of Science Department  to stop perpetuating the scaremongering and pathologizing  of autistics with a class on the autism “epidemic.” Beyond that, however, we call for a sweeping, holistic reform to the bioethics policy at Penn. We call on Penn to embrace and celebrate the diversity of human existence. We call for widespread acceptance of the social model of disability and for disabled lives to be seen as worthy and equal to able-bodied and neurotypical ones.

We call on Penn to realize that people on the spectrum are important members of the Penn community and should be valued as such. It is society that is broken. Not us.

Amber Blaylock is a College of Arts and Sciences Senior from Harrisburg studying physics. Her email address is blaya@sas.upenn.edu. Xeno Washburne is a College of Arts and Sciences Junior from Moscow studying English and gender, sexuality, and women's studies. His email address is akudr@sas.upenn.edu.

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