History

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An image from Leo Kanner's 1943 paper that attributed autism to a lack of maternal warmth.

Photo of two autistic children tied to radiators in a mental asylum. This photo was taken by José Nicolas in Deir el Qamar, Lebanon in 1982.

The Beginning of Injustice

While the discovery of autism was groundbreaking in providing information about the disorder, it also led to horrific treatment towards the autistic community.In 1943, Leo Kanner became one of the first scientists to identify autism as a neurodevelopmental disorder that affected one’s ability to socially and verbally interact with others. Autism was thought to have developed from poor parenting, and as a result, the term “refrigerator mom” was coined to describe parents that supposedly lacked fondness towards their children. With this inaccurate belief that parents caused their children's’ disability, individuals were removed from their homes, placed into abusive psychiatric institutions, put in straight jackets, and forced to receive copious amounts of drugs in order to “cure” their disorder.

During the 1940s to the 1970s, American parents and doctors mainly resorted to institutionalization, where autistic individuals were placed into abusive mental facilities. These facilities coined themselves as schools, but instead locked children up, segregated them from society, and forced them to endure overcrowded living conditions and an extremely harmful environment. Consequently, shock therapy was on the rise, with Ugo Cerletti and Lucio Bini performing the first seizure-inducing electric shock on April 11, 1938 on Enrico X, a mentally ill patient from Italy.Soon after, the therapy quickly transitioned into medical practices throughout the United States, Britain, and Europe. During electroconvulsive therapy, small electric currents travel through the brain to trigger a brief seizure, which is supposed to reduce severe agitation and self-destructive behaviors. The initial intent of shock therapy was to prevent individuals from harming themselves, but it quickly became a form of punishment. In some American institutions, caretakers would shock an individual if they completed unwanted behavior, such as “stimming”, which is when one repeatedly makes a certain sound or movement.

Original ABC Nightline news story reported on November 29th 2012. (May be sensitive to some viewers.)

Andre and his mother, Cheryl McCollins pictured together. Cheryl did not realize how horribly JRC was treating her son, and so she filed a lawsuit against the institution to bring justice to her son. Ultimately, the lawsuit ended with a settlement deal.

Making The National Stage

In 2012, headlines dominated news stories about the abuse towards Andre McCollins at the Judge Rotenberg Center (JRC), which had occurred 10 years earlier in Fall 2002. According to a call from JRC to Andre’s mother, Andre had a “bad day” and in turn received an unfathomable 31 shocks. When his teacher told him to take his jacket off, he did not respond, and thus, was shocked. After he crawled under a table out of fear, he was “tied face down to a four-point restraint board, each limb held in place by a locked cuff, his head encased in a helmet.” Andre was shocked for 6 hours, and received shocks for things such as tensing up his body or screaming after a shock. According to his mother, Andre was never the same after that day - for weeks he was silent and had a blank stare, clearly suffering from post traumatic stress disorder. What happened to Andre should have never happened. Andre must suffer trauma and terror because of his staffers’ cruelty and lack of education about his disorder. Andre’s mother trusted JRC to help Andre prevent his self injurious behavior, and her trust was thrown out the window. Unfortunately, this story only touches the iceberg of the multitude of horror stories with shock therapy. Websites such as Mad in America are flooded with comments from survivors, sharing their journey with ECT and how it caused them memory loss, mental health crises, and more, forcing them to relearn basic actions because of the damage it did to their brain. With this alone, one must wonder why shock therapy still exists.

A protest from the early 1970's that advocated for proper treatment of those with disabilities. The Disability Rights and Autism Rights Movement were inspired by the Black Civil Rights Movement. Key leaders from the Civil Rights Movement, such as Martin Luther King Jr., inspired the disability community to practice nonviolent protests.

A photo from the United Nations Convention Against Torture. The Convention was adopted by the General Assembly of the UN on December 10, 1984 and entered into force on June 26, 1987.

Efforts at Reform

Reform efforts to stop electroconvulsive therapy on autistic people began fairly recently with initial efforts made by disability rights advocates and autistic people during the Autism Rights Movement in the 1970s. This movement began with people advocating for the protection of the rights of those with disabilities, and in 1990, the American with Disabilities Act (ADA) was passed to ensure the equal treatment of autistic people. From the early 2000s leading up to the modern day, autistic people have continued to share their stories in order to educate the public that autism is not something that needs to be cured, as well as to encourage leaders to create legislation to further protect the rights of autistic people in education, work, and social systems.

One of the biggest steps towards reform was documentation of shock therapy abuse. In 2009, the United States Government Accountability Office reported hundreds of instances of abuse and death relating to shock therapy. Stories about the Judge Rotenberg Center’s misuse of the graduated electronic decelerator urged the United Nations (U.N.) to research these instances, leading to them to state that the graduated electronic decelerator violated the U.N. Convention Against Torture. This Convention takes on the language of social justice by explaining that the U.N. acknowledges “the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world.” This Convention signifies the power of world leaders working together to define torture in order to understand how shock therapy is a clear breach of the rights of autistic people. Similarly, the Catholic Church has been very involved in disability rights by including disabled members in their community and creating specific guidelines for churchgoers to abide by in order to support disabled brothers and sisters. The actions of the United Nations and the Catholic Church are incredible examples of what happens when leaders of faith come together, align their values, and create efforts to uphold the dignity of all people.

The FDA Ban

The FDA has a sordid history with this movement. In March of 2020, victory seemed like it had finally been achieved when the FDA banned the graduated electronic decelerator because of the harm it caused students. However, parents of students at the Judge Rotenberg Center petitioned this ban because they said that shock devices helped their children stop aggressive behavior. In July 2021, the FDA overturned the ban because they said they ban regulated medical practices, which the FDA is not allowed to do. Therefore, disability advocates were given false hope, and now still 55 of the 300 students at the JRC receive shock therapy.

While there are barriers in the efforts to stop shock therapy, such as opposition from parents of autistic children and a lack of awareness about this issue, these barriers can be broken. Efforts made by disability rights advocates prove that when we work together in unity to solve this problem, we are able to create successful solutions. Despite the massive challenges and setbacks, reformers have not lost their passion to bring justice to autistic people. Instead, they have bounced back even stronger, more in unity with our disabled brother and sisters. Reformers are amplifying autistic voices so that world leaders hear the heartbreaking stories of autistic people who have received shock therapy, compelling lawmakers to ban this treatment and any other forms of abuse towards disabled people.

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