Autism Women’s Network (or AWN, a non-profit advocacy organization run by and for Autistic women and non-binary individuals,) has recently learned that the Federal Drug Administration (FDA) has proposed a ban on aversive shock therapy. AWN vehemently opposes the practice of aversive shock therapy and applauds the FDA for proposing a ban on such treatments and devices. AWN urges the FDA to follow through with the proposed ban on the use of aversive shock therapy – an unethical and ineffective therapy – and strongly encourages disability advocates, allies, and concerned individuals to submit comments online to the FDA in support of the ban beginning April 25, 2016 to help ensure that the FDA follows through with this proposal.
According to a 2013 Human Rights report from the United Nations, aversive shock therapy, a controversial autism “intervention,” is “tantamount to torture or cruel, inhuman, and degrading treatment” and should be “banned from all health settings.” Aversive shock therapy is typically delivered as a series of electric shocks to the skin via a mechanical device intended to “correct” or extinguish certain behaviors.
Though more widely practiced in previous decades, aversive shock therapy has been replaced by evidence-informed treatments that are less invasive and more effective. The use of aversive shock therapy, in fact, is illegal in a number of states. Currently the Judge Rotenberg Center, or JRC, a residential facility for youth and adults with disabilities in Massachusetts, is the only institution in the nation that still utilizes aversive shock therapy. Though the JRC has used aversive shock therapy for 28 years, in recent years public awareness of the JRC’s use of this problematic technique has dramatically increased in part due to lawsuits that have been filed against the JRC, public hearings that have been convened concerning this issue, and media coverage depicting footage of disabled individuals at the JRC being subjected to numerous, lengthy high-voltage shots for minor transgressions.
Jessica Msumba, an autistic adult who resided at the JRC and was repeatedly subjected to aversive shock therapy, likens the experience of being shocked as being “Underground in Hell,” adding, “It’s so scary. I would ask God to make my heart stop because I didn’t want to live when that was happening to me. I just wanted to die and make it stop.”
Aversive shock therapy is more than torturous; it simply doesn’t work. Extensive reviews of research studies from over three decades reveal that there is little to no empirical evidence of long-term benefit from aversive shock therapy and that cases of perceived short-term benefit may actually be a result of non-aversive forms of treatments clients were receiving concurrently. However, research has identified a plethora of risks/negative effects associated with aversive shock therapy. The negative effects of aversive shock therapy include discomfort, avoidance, fear, anxiety, depression, and aggression to burns, tissue damage, pain, neurological symptoms, psychosis, post-traumatic stress disorder, and more.
The lack of efficacy identified in research correlates with information derived from substantial clinician, patient, staff, and caregiver reports, position statements from numerous medical and disability organizations, and individuals about the adverse effects of aversive shock therapy. Citing similar efficacy and ethical concerns, a US Federal Drug and Alcohol Agency (FDA) panel recommended banning aversive shock therapy in 2014. Additionally, for decades advocates have denounced this abusive practice and called for the JRC to cease its torture of disabled children and adults under the guise of “treatment.”
Although proposing a ban is a promising step, there is much more that needs to be done to assure that a ban is finalized; AWN urges the FDA to follow through with all necessary steps required for the ban in a transparent and timely manner. Even though much strong evidence exists that supports banning aversive shock therapy, there are also formidable obstacles to the ban proposal. One obstacle is finances; the JRC, which reportedly earn overs $50 million annually, will likely oppose this proposal (as the JRC could potentially lose significant revenue if the ban is passed). Ableism is another potential barrier, as societal attitudes toward disability can provide fertile ground for the existence of problematic interventions such as aversion therapy to flourish.
Autism Women’s Network implores our community and allies to actively support the FDA’s proposed ban. It is imperative that we communicate our concerns to the FDA in order to help facilitate this process and that we reach out to the public in order to gain additional support for the ban.
Please join Autism Women’s Network in helping to end the torture that disabled youth and adults at the JRC are forced to endure. Reach out the the FDA by submitting an electronic or written comment within the next 28 days. Below are instructions from the FDA website about how to submit comments:
“Instructions: All submissions received must include the Docket No. FDA-2016-N-1111 for “Proposal to Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior.” Received comments will be placed in the docket and, except for those submitted as “Confidential Submissions,” publicly viewable at http://www.regulations.gov or at the Division of Dockets Management between 9 a.m. and 4 p.m., Monday through Friday.
Submit electronic comments in the following way:
Federal eRulemaking Portal: http://www.regulations.gov.
Follow the instructions for submitting comments. Comments submitted electronically, including attachments, to http://www.regulations.gov will be posted to the docket unchanged. Because your comment will be made public, you are solely responsible for ensuring that your comment does not include any confidential information that you or a third party may not wish to be posted, such as medical information, your or anyone else’s Social Security number, or confidential business information, such as a manufacturing process. Please note that if you include your name, contact information, or other information that identifies you in the body of your comments, that information will be posted on http://www.regulations.gov.
Submit written/paper submissions as follows:
Mail/Hand delivery/Courier (for written/paper submissions):
Division of Dockets Management (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852.
For written/paper comments submitted to the Division of Dockets Management, FDA will post your comment, as well as any attachments, except for information submitted, marked and identified, as confidential, if submitted as detailed in ‘Instructions.’
Confidential Submissions—To submit a comment with confidential information that you do not wish to be made publicly available, submit your comments only as a written/paper submission. You should submit two copies total. One copy will include the information you claim to be confidential with a heading or cover note that states “THIS DOCUMENT CONTAINS CONFIDENTIAL INFORMATION.” The Agency will review this copy, including the claimed confidential information, in its consideration of comments. The second copy, which will have the claimed confidential information redacted/blacked out, will be available for public viewing and posted on http://www.regulations.gov. Submit both copies to the Division of Dockets Management. If you do not wish your name and contact information to be made publicly available, you can provide this information on the cover sheet and not in the body of your comments and you must identify this information as “confidential.” Any information marked as “confidential” will not be disclosed except in accordance with 21 CFR 10.20 and other applicable disclosure law. For more information about FDA’s posting of comments to public dockets, see 80 FR 56469, September 18, 2015, or access the information at: http://www.fda.gov/regulatoryinformation/dockets/default.htm.
Docket: For access to the docket to read background documents or the electronic and written/paper comments received, go to http://www.regulations.gov and insert the docket number, found in brackets in the heading of this document, into the ‘Search’ box and follow the prompts and/or go to the Division of Dockets Management, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852.”
For additional information about making a comment, visit:
For a comprehensive list of resources regarding aversive shock therapy and the JRC, visit: https://autistichoya.net/judge-rotenberg-center/