Thanks to ECT, “Jonah is no longer is violent with other people — which is the only reason he is still able to live at home”
By Amy Lutz
I can’t tell you how many times I have read — on the NCSA blog or in the numerous Facebook groups I belong to for parents of severely autistic children — the most heartbreaking accounts of autistic kids attacking their parents or pounding themselves in the face and thought, That kid really needs some ECT.
My son Jonah, now 22, used to be one of those kids, and I used to be one of those moms – bitten, bruised, and terrified that one day Jonah would cause a permanent, serious injury to himself or someone else. Starting at age six, we tried countless medications and behavioral interventions to try to control his violent rages but nothing worked – not even an almost year-long hospitalization. We were staring down the barrel of a long-term residential placement when we decided to try an old intervention that had recently been successfully used on this new population: electroconvulsive therapy (ECT).
The clinicians who treat autistic kids with the highest levels of aggression and self-injury generally agree that these behaviors are not “part of the autism,” as parents may have been told, but are often caused by co-morbid affective or catatonic disorders that can be treated the same way they would be in the neurotypical population: with medication, and, if that fails (as it did for us), ECT. Figuring out whether your child’s behaviors are operant (i.e., environmentally triggered) or automatic (internally driven) is an essential first step to resolving them, and may require a functional behavior assessment (FBA).
ECT has been highly stigmatized, particularly because of its portrayal as a form of torture in movies like One Flew Over the Cuckoo’s Nest. But ECT is not aversive — it is done under general anesthesia, and muscle relaxants are administered so there is very little movement. There are over 15,000 citations on PubMed documenting the safety and efficacy of ECT; about 100,000 Americans get it every year. The most common side effects are nausea and headache, although Jonah does not seem to be bothered by these.
When we decided to celebrate Autism Action month this April, I knew immediately that I would write about ECT. Jonah went from attacking us, often multiple times a day, to not attacking us AT ALL. He still gets agitated sometimes, as we all do, and sometimes he expresses that agitation by biting his hand — we’re still trying to teach him a substitute behavior for that. But he no longer is violent with other people — which is the only reason he is still able to live at home, go to the day program he loves, and enjoy his favorite community outings to Costco and Wendy’s. I am, if anything, understating the case when I say that ECT has been transformative, for Jonah and for our entire family.
If you are interested in learning more about the use of ECT to treat extreme aggression and/or self-injury in autistic individuals, check these out:
• My book: Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, by Amy Lutz
• This article in the Atlantic, How Shock Therapy Is Saving Some Children with Autism
• This 24-min BBC documentary, on YouTube, which features Jonah and an autistic young woman, and in which you can see what an actual treatment looks like.
Amy Lutz is Vice President of the National Council on Severe Autism.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.