As if parents with autistic children didn’t have enough to worry about. They get a big stigma-whammy from other parents, from schools that only pretend to be accommodating, and from a health-care system that puts autistic kids in the back of the back ward.
That’s one whammy.
I’m going to have to background the second whammy for you a bit. Some children with autism have a variety of twitches and fidgets that pediatric psychiatry currently classifies as “stereotypic movement disorder.” In fact, these repetitive movements and posturings are a form of catatonia, and adult catatonia has just been recognized as a real disease – independent of schizophrenia – in the recent Diagnostic and Statistical Manual of the American Psychiatric Association, called DSM-5.
Now, these movement disorders can be very serious, including head-banging, head-punching, lip-mutilating, and other forms of self-injurious behavior. The children may detach their retinas and go blind, or induce a cerebral bleed. When SIB occurs, it’s a medical crisis.
And parents with SIB children are at their wits’ end. They put football helmets on their children, splints on their arms so they can’t bend their elbows and hit their faces, bulky pads on their tummies so they can’t knee-jerk themselves in the face. It is horrible.
In the face of the massive crisis of SIB, there is one piece of good news: It is eminently treatable.
I hear you. “Doctor, doctor, tell us what the treatment is! We’re all ears.”
Wait for it.
The treatment is shock therapy. And it really works. Electroconvulsive therapy (ECT) has established itself as a safe and effective treatment in children with SIB. There are very few side effects. The children do not lose all their memories. Their brains are not damaged. After a series of stimuli, the SIB lessens markedly and may even go away. The children are able to leave all restraints behind, and go home, and play Little League.
The effects of ECT in the catatonia of autism are little short of miraculous. And in treating that form of catatonia called SIB they are in fact miraculous. Everybody on the ward is in tears as these children are able to go home. The parents are sobbing. Dear readers, I hope that you never have to experience this in your own children, but if you do, you will be sobbing too.
So here’s the second stigma-whammy. ECT in autistic SIB and other forms of catatonia remains deeply frowned on by the medical establishment. The media haven’t even heard of it, but once they do, you can predict the headlines: “Shock Treatment Forced on Autistic Children.”
At a recent autism conference at the National Institutes of Health in Bethesda, a physician who specializes in SIB made a brief presentation and mentioned ECT once. The chair of the panel, one of the heads of the NIH institutes, told her that her time was up and asked her to sit down (she courageously continued to speak anyway). In the following discussion, a nurse, whose only apparent credential was that she had seen “One Flew Over the Cuckoo’s Nest,” announced that ECT was a harmful and dangerous procedure. And afterwards, agitated posts flew around the social media on the Horror of Bethesda.
So stigma? Yeah. Don’t get me started.
If medications or psychotherapy could help these children, bravo! But for many, ECT is the only procedure that will give them back their lives, and bring peace to parental minds.
So I want to mention an upcoming conference on Dec 4, organized by the good guys, the EASI Foundation in Philadelphia. This stands for Ending Aggression and Self-Injury in the Developmentally Disabled, and the foundation is led by Amy Lutz (firstname.lastname@example.org). Among the speakers will be Dr. Lee Wachtel, who heads the Neurobehavioral Unit at the Kennedy Krieger Institute in Baltimore and is an associate professor of psychiatry at Johns Hopkins Medical Institutions. (See, Wachtel & Shorter, 2013; Wachtel & Dhossche, 2010).
A lot will be said at the conference about ECT. There will probably be demonstrations in the streets by the antipsychiatry fanatics (“No Shock Therapy for Kids!”), and I dread to think how the media will cover this.
But the main objective here is the successful treatment of these terribly stigmatized children rather than looking good for Barbara Walters. The ace card is science, not public relations.