This month, many inspiring stories will be featured in the media in celebration of Autism Awareness month, such as one I just read about a young autistic basketball player who recently sank his thousandth half-court shot, or another about the teen who performed a duet with Weird Al Yancovic at the recent Comedy Central benefit. While these victories should unquestionably be celebrated by everyone touched by autism, it’s important to realize they don’t reflect reality for a significant chunk of the community.
Many families of autistic individuals live in a state of constant crisis because of severe aggressive and self-injurious behaviors that can leave them isolated, unable to leave their homes, constantly fearful of significant injury to their children or themselves: families like mine. My son Jonah, now 16, suffered frequent, unpredictable and dangerous behaviors that various behavior plans, innumerable medication trials and a ten-month hospitalization on a neuropsychiatric unit were unable to stop. Facing what would doubtlessly be a lifelong residential placement, we decided to try electroconvulsive therapy (ECT) after learning of its successful use treating other kids like Jonah.
That was five years ago. Now, instead of attacking us several times a day, Jonah never attacks us at all. His rages are gone, and with them the bruises, scratches and bite marks that used to pepper my forearms, the smashed windows and the bloody noses he suffered from repeatedly punching himself in the face. My book Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children recounts our ECT experience, as well as those of six other families.
ECT does not cure autism. But it can be very effective treating conditions that frequently affect individuals with autism, such as catatonia or, as in my son’s case, mood disorders. Jonah was diagnosed with rapid cycling bipolar when he was nine years old. While most people associate catatonia with “freezing” and posturing, the symptoms most likely to land an autistic person in an ER, psychiatric hospital or residential facility are the dangerous rages that are hallmarks of both agitated catatonia and bipolar disorder in this population.
These rages are intrinsic, or automatic. They are unpredictable, unprovoked by environmental stimuli. Jonah, for example, would suddenly attack me while he was watching a video, playing on the beach or even eating his absolute favorite meal, “ketchup and one thousand hamburgers and French fries.”
Because these behaviors are caused by neuropsychiatric impairments and are not under conscious control, they generally need to be medically stabilized before any behavior plan can be successful. While drugs such as anti-psychotics and benzodiazepines are virtually always prescribed first, they often fail to help, or, even worse, cause bizarre side effects.
Fortunately, recent case studies report the successful treatment of intractable aggressive and self-injurious behaviors in developmentally disabled patients with ECT in prominent hospitals around the country, including the Kennedy Krieger Institute, Mt. Sinai Hospital, the University of Michigan and the University of Mississippi (a bibliography of over 70 studies supporting the safety and efficacy of ECT in the pediatric population specifically can be found at my website).
In the last couple of years, there’s been an increased awareness of the problem of violence in the autistic population: A 2013 study published in the journal Research in Autism Spectrum Disorders found that over half of autistic children and teenagers exhibit aggressive behaviors. Many of these behaviors can be safely managed at home, but many can’t: in the throes of these rages autistic individuals have blinded themselves; left their caregivers with concussions and broken bones; even unintentionally killed themselves or their parents.
Caregivers and providers need to know that ECT can be a very effective option as they fight to manage these dangerous, devastating behaviors. There is no doubt that without it, Jonah would be on a locked ward instead of where he is as I write this: out shopping with his father, in all likelihood trying to convince him that all we really need to feed our family of seven for the week is an enormous sheet cake.
Amy S.F. Lutz’s essays on autism have appeared or are forthcoming in many websites and publications, including The Atlantic, Slate, and Psychology Today. She is also the author of the book Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, and the co-founder of EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled.