Monday, October 31, 2016

Electroconvulsive Therapy and Autism: Caution Advised

Shannon Des Roches Rosa 

Lightning Strike
Photo © Skyseeker, on Flickr. Creative Commons license.
[image: lightning striking a cityscape, at night.]
Spectrum News recently published How ‘Shock Therapy’ is Saving Some Children with Autism. The article was also published in The Atlantic.

Like many of you, my initial reaction was "WTF." Which, to be fair, was in part primed by the the misinformation spread by existing autism and electroconvulsive therapy (ECT) proponents. But I am always worried about articles about "treatments" for autistic people who self-injure, because of the focus on treatments rather than sourcing out causes. So here's what I think you should know about reading articles like this, and about ECT and autism in general.

Spectrum is dedicated to covering developing autism science, and articles of interest to the autism science and research communities. Ideally, those readers already understand that there is very little research into autism and ECT, that we don't know nearly enough about autistic brain development to anticipate the kind of effects ECT could have, and that ECT as a treatment for autistic self-injury and catatonia is experimental. They will notice that interviewed scientists and clinicians are begging for more research. They will read closely, and take note of statements near the end such as, "this is for kids who are going to be dead if they’re not restrained," and, "The numbers are small, no more than 50 children treated in the U.S. in any given year, although no one knows the exact figure." They will be reassured by how many safeguards and hurdles exist to accessing ECT for autistic people. Again, ideally.

When Spectrum articles are republished in mainstream outlets like The Atlantic, however, many readers won't know anything about autism, except negative stereotypes and myths -- which for them this article will likely compound, despite its many caveats. And as the moderator of a reasonably-sized autism community and a participant in several large online autism parenting groups, I guarantee that far too many families still approach autism from a "treat" rather than "understand" perspective -- which means the takeaway for some parents of autistic kids will be "ECT works for autism," and many will try to pursue ECT outside of controlled conditions. This worries me, greatly, because focusing on "solutions" undercuts much-needed understanding and acceptance efforts, especially for the high-support autistic people in question.

If you find yourself in discussions about the Spectrum or Atlantic article specifically, or about ECT and autism in general, here are the points you need to address:
  • When we talk about autistic people who self-injure, we always have to consider medical or other reasons why self-injury is occurring first, before resorting to treatments. Always. It is very worrying to think that ECT may be stopping autistic people's "behaviors," but not addressing the factors behind those behaviors, such as chronic pain, illness, or sensory onslaught.
  • Articles about treatments for autistic people really should include accounts from autistic people who have experienced said treatments. With consent. Otherwise, side-eye.
  • We don't know enough about the development of autistic brains to know how the common side effects of ECT, such as memory loss, will affect the autistic people in question. We do know that non-speaking autistic writer Carly Fleischmann lost her ability to communicate following ECT, was traumatized by the experience, and is only now recovering.
  • ECT does have uses, such as for treating intractable depression. However, again, there is very little research into ECT as a treatment for autistic people.
  • Electroconvulsive therapy is different from the electroshock aversives used at the Judge Rotenberg Center. Confusing the two is understandable but not helpful, not when critiquing ECT and autism articles.
  • If -- and this is a guarded if -- ECT is appropriate for autistic people who experience self-injury, it is only appropriate for a very small number of them.
I realize that setting a high-support autistic person up with the best possible conditions, understanding, and acceptance doesn't fix everything, because of personal experience -- but families really do need more information about why autistic people self-injure, and about the state of autism and ECT research, before absorbing and acting on autism and ECT articles. Hopefully this will help.