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Why Hasn’t Electric Shock Treatment For Autistic People Been Banned Yet?

Lydia X. Z. Brown
Aug 3, 2016 · 7 min read
flickr/U.S. Food and Drug Administration

More than 20 years ago, the UCLA behaviorist who pioneered the use of painful electric shock as a treatment for autistic children publicly repudiated his own workyet people with developmental and psychiatric disabilities continue to receive shocks at the Judge Rotenberg Center (JRC) in Massachusetts, the sole program clinging to the method.

Not only do these treatments have no scientific basis, but we’ve found other, non-painful ways to treat even severe disability-related self-injurious and aggressive behavior. Reliance on either mind-numbing psychotropics or aversive interventions with only short-term effectiveness is a lazy and damaging strategy in the face of modern science.

Finally, it seems, the federal government is taking notice of the inhumanity and dangers of electric skin shock. This spring, the U.S. Food and Drug Administration (FDA) announced a proposal to “ban electrical stimulation devices (ESDs) used for self-injurious or aggressive behavior” on the grounds that “they present an unreasonable and substantial risk to public health that cannot be corrected or eliminated through changes to the labeling.”

But while this a necessary sign of progress, there are still ample causes for concern. It took the FDA two years to act on its advisory committee’s recommendation to ban electric skin shock based on a long-awaited hearing before its Neurological Devices Advisory Panel, comprised of 20 experts from leading research universitiesone of whom still questioned, horrifyingly, whether autistic people can feel the same pain as non-autistic people. And since the spring announcement of a proposed ban, there have already been delays in implementation, with a federally mandated 30-day public comment period extended an additional 60 days without explanation through the end of July.

At this point, the FDA is working to finalize and enact the rule, but the continued delays raise many questions about how long it will take for the ban to actually come into effect. It’s possible the agency’s movement has been so tepid because of JRC’s history of litigiousness in the face of regulatory action. Worse, it’s likely that pressure from JRC and its supporters caused the FDA to propose allowing an otherwise inexplicable transition periodpossibly anywhere from 30 days to as long as six monthsfor those currently receiving the shocks, despite the agency’s findings of ineffectiveness and substantial dangerousness.

The FDA’s hedging on swift change is disquieting — as use of painful electric shock has hurt autistic and other disabled people for far too long.

For many years, the nation’s leading experts in treating the most challenging behaviors associated with significant disabilities have issued research and practice-based statements against the use of electric shock as inhumane, ineffective, and incongruent with modern science, including a seminal paper published by a coalition of experts in 1990. Electric shock and similar techniques, known as aversives, have been condemned by many other professional associations and advocacy organizations led by disabled people and families, ranging from the National Association of State Directors of Developmental Disabilities Services, American Association on Intellectual and Developmental Disabilities, and the Association of University Centers on Disabilities, to the National Association of Councils on Developmental Disabilities, National Down Syndrome Congress, Council of Parent Attorneys and Advocates, National Disability Rights Network, and Autism Society of America.

A small but vocal minority of JRC supporters would like to paint the FDA as an overreaching bureaucracy willing to acquiesce to the most whimsical demands of special interest groups, but the truth is, the agency did not make the decision to propose a ban on electric skin shock devices (and would not ban any medical devices) lightly. The FDA has only ever successfully banned one other medical device in its over century-long existence as an agency, and the ban on these shock devices was only approved after receiving overwhelming evidence on the serious danger they pose.

The FDA pursued a methodical multidisciplinary scientific approach to decide whether the device poses an unreasonable and substantial risk of injury that cannot be fixed through labeling changes. The agency determined that the potential benefit of reducing severe self-injurious or aggressive behavior is far outweighed by multiple likely physical and psychological harms caused by the devices, which include exacerbated aggression, burns, accidental shocks, post-traumatic or acute stress disorders, heart palpitations, seizures, and suicidality, among others.

The JRC’s supporters claim that the shocks are a last resort used only in the most severe cases, after people with significant intellectual and developmental disabilities have been rejected or expelled from numerous other programs. They say that these shocks inflict minimal pain while saving residents’ lives from consequences of dangerous self-injury.

The JRC also claims that the electric shock is no worse than a bee sting or a papercut, but survivors have testified otherwise. The JRC’s primary device emits 45.5 milliamps of electricity — a shock more than 15 times as powerful as stun belts designed to incapacitate adult prisoners that emit only three to four milliamps. Jennifer Msumba, an autistic adult who spent seven years at the JRC, described the shocks as “a stinging, ripping, and pulling pain that froze time.” Photographs of Andre McCollins, another autistic adult who spent 20 months at the Massachusetts facility, show severe burns after staff subjected him to 31 shocks in seven hours — afterward, he was in a catatonic state with acute stress response.

The population receiving the shocks also includes many people with psychiatric diagnoses and increased referrals from Rikers Island, as well as people with developmental disabilities who have been receiving shocks for decades with no long-term changes in their behavior. Individuals who formerly received the shocks at JRC have also successfully transitioned into other programs that do not use pain-based methods, where they are slowly recovering from the trauma and pain inflicted by the electric shock aversives.

The evidence-based literature indicates that, at best, electric skin shock temporarily interrupts self-injurious or aggressive behavior, but has no long-term effectiveness, a fact that even the JRC’s founder, Dr. Matthew Israel, concedes, despite the JRC’s continued use of this “therapy.” What little research exists in support of electric skin shock suffers multiple deficits in methodology, lack of peer review, and conflicts of interest. In fact, much of it was published by the JRC’s founder or his close colleagues. In contrast, the leading researchers and clinicians serving people with challenging behavior have for years implemented noninvasive treatment strategies that target underlying causes without reliance on fear and learned helplessness.

The people who would benefit the most from the proposed ban belong to some of the most vulnerable populations. Around 90% of JRC students are people of color — 82% are Black or Latino. Typically, JRC students have been deprived of the legal right to make decisions for themselves, even if they could do so with sufficient support. As a result, the population currently subject to electric skin shock is uniquely stripped of legal protection through processes that favor nondisabled people’s assumptions about lack of capacity and willingness to consent to dangerous, painful treatment.

In a twist of logic, JRC supporters argue that banning the shocks would unfairly discriminate against people with disabilities — because the FDA does not currently propose banning electric skin shock devices used to aid smoking cessation. If the same level of evidence accumulated that such devices harmed smokers, who generally control the devices themselves, to the same extent they harm people shocked against their will for self-injurious or aggressive behavior, then the FDA would be justified in banning devices for smoking cessation as well.

But that does not mean that the government lacks the power to act on the overwhelming evidence available about the impact of these devices as used at JRC. And it is not only legitimate, but imperative, that the government intervene to prevent abuse of its most vulnerable citizens.

While the few who still support electric shock claim that the only alternative is mind-numbing psychotropics and constant physical restraint, the successful outcomes of the many thousands of people with significant disabilities and complex behavioral challenges without drugs, restraints, or shocks demonstrate the need to move past outdated treatment modalities. Clinicians, provider agencies, and other specialists routinely implement humane interventions such as functional communication training, individualized positive behavioral interventions and supports, and transition to supported choices, all of which are proven to reduce dangerous behavior and produce long-term gains by targeting environmental triggers and causes for self-injury or aggression, teaching non-harmful replacement behaviors, and developing communication strategies to reduce aggression.

It is long past time for the FDA to exercise its regulatory power to end the injury and trauma inflicted on untold numbers of disabled people over the years. Advocacy groups led by people with disabilities, families, and professionals with decades of relevant experience, have long opposed pain-based treatment. The JRC continually misrepresents the nature and purpose of these shocks by distorting the truth about its population and use of shocks.

In fact, I am autistic and engage in behaviors punishable by electric shocks at the JRC — I pull out my hair, rip my fingernails, flap my hands, tense my body, scratch my ears until they bleed, wrap my legs around chairs, cover my ears at loud sounds, and pick scabs. Those behaviors may be distressing and confusing to others, but they are not life-threatening, and people like me deserve social policies that support access to humane, evidence-based treatment, and support.

The Establishment

The conversation is much more interesting when everyone has…

Lydia X. Z. Brown

Written by

organizer, educator, writer, speaker | disability justice, radical resistance, collective liberation | #BlackLivesMatter | they pronouns

The Establishment

The conversation is much more interesting when everyone has a voice. Media funded and run by women; new content daily.

Lydia X. Z. Brown

Written by

organizer, educator, writer, speaker | disability justice, radical resistance, collective liberation | #BlackLivesMatter | they pronouns

The Establishment

The conversation is much more interesting when everyone has a voice. Media funded and run by women; new content daily.

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