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ASAN Testimony to the Neurological Devices Panel of the Medical Devices Advisory Committee of the FDA

ASAN President Ari Ne’eman gave the following testimony urging the ban of aversive-conditioning devices to the Neurological Devices Panel of the Medical Devices Advisory Committee of the Food and Drug Administration (FDA).

Good morning. My name is Ari Ne’eman, and I am testifying here in my role as President of the Autistic Self Advocacy Network, the leading national advocacy organization run by and for Autistic adults and youth. In addition, since 2010, I have served as one of President Obama’s appointees to the National Council on Disability.

ASAN strongly urges the FDA to prohibit the use of aversive-conditioning devices for all populations. An extensive body of research shows that youth and adults with significant behavioral challenges, including self-injury and aggression, are best served with positive, non-aversive support measures. Self-injury and aggressive behavior are typically the result of lack of access to meaningful communication support systems or adequate mental health supports. Neither of these needs are met by the use of aversives.

Some have claimed that aversive-conditioning devices are appropriate for a subset of children and adults who prove ‘the most resistant to alternative forms of treatment’. As noted in the FDA research review, no evidence exists to suggest such a distinct population. In truth, those who are subject to aversive-conditioning are no different than those who are served purely through non-aversive methods. I would like to address the remainder of my remarks to this issue.

In 2011, the State of Massachusetts – the only jurisdiction in the nation where these devices are used – prohibited the use of aversive conditioning devices for any student not currently subject to them. In the seven months after the ban, the Judge Rotenberg Center – the only facility where these devices are used – admitted 28 new students and did not require the use of aversives to serve any of them. Are we to believe that the eighty-three people currently subject to these devices are the eighty-three most disabled and most resistant to treatment people in the United States of America? The suggestion is laughable. 

 On a personal note, had my life been different, I could have ended up at the Judge Rotenberg Center. I have the same diagnosis as a number of those who ended up there, subject to the devices now under review. As a child and into young adulthood, I self-injured, I was aggressive, I was removed from my neighborhood school because of behavioral problems.

If I had been born in a different place or to a different family, the years I spent graduating college and building and running an organization could have been spent subject to a “treatment” that the United Nations has rightly deemed torture. If I had been slightly less lucky, instead of serving as a presidential appointee and working on public policy, I could be living a life in which not a single moment would be free from the threat of pain. Luck and circumstance, not biology, made the difference.

Not every person at the Judge Rotenberg Center is like me – but every person there has someone who is like them in the broader community being successfully supported without aversives. You don’t have to be able to go to college or work or even be able to talk, write or type in order to live and succeed without aversives. People with severe cognitive, behavioral and communication related challenges are served throughout the country through positive means of support, including many with self-injurious and aggressive behaviors.

The FDA should ban aversive-conditioning devices in their entirety, including the removal of such devices from those currently subject to them. As evidenced by successful actions by the District of Columbia, New York State and other jurisdictions to remove residents at the JRC to settings in which they would be served without aversives, this can be done while maintaining safe and effective service-provision to the individuals in question.

 The Autistic Self Advocacy Network urges the panel not to allow the use of aversive-conditioning devices to continue with some form of labeling or device technological restriction. The use of these devices is unsafe for any population and in any form. Indeed, such a limited measure would be a significant step backwards, given that the devices are now currently only in use at a single location. If the FDA were to allow for the continued use of these devices under specific circumstances, its decision would be utilized to expand the use of these devices into new locations or with new populations.

 We strongly urge the FDA ban aversive-conditioning devices. Science, research and justice allow for nothing less. I thank you for your time and stand ready to answer any questions you may have.

 

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