Dr. Wachtel is Associate Professor of Psychiatry, Kennedy Krieger Institute, Johns Hopkins School of Medicine, Baltimore, MD; Dr. Kellner is Chief of Electroconvulsive Therapy, New York Community Hospital, Brooklyn, NY; Dr. Fink is Professor Emeritus, Departments of Psychiatry and Neurology, Stony Brook University, Stony Brook, NY.
Since its introduction 8 decades ago, ECT has been a standard treatment for severe affective and psychotic illness, as well as less common indications including catatonia, Parkinson disease, neuroleptic malignant syndrome, and status epilepticus. A new indication for ECT has emerged for intractable self-injurious behavior (SIB) among individuals with autism and intellectual disabilities.1 Response to ECT is typically swift and robust, with great benefit for patients and their families.
SIB is defined as any act toward the self that causes physical injury, and has been recognized for decades to occur among individuals with autism spectrum disorders and intellectual disability. Estimates of SIB prevalence vary widely, with higher rates usually found among those with greater cognitive and communication impairments, and psychiatric and medical comorbidities. Common manifestations of SIB include head banging; hand-to-head, knee-to-head, and hand-to-body hitting; self-pinching; scratching and biting; and body slamming against hard surfaces. The frequency of SIB varies widely, from occasional, to daily, hourly, or even a per-minute basis. Frank bodily injury is common and includes bleeding, bruising, swelling, fracture, infection, disfigurement, traumatic ossification, cataract development, retinal detachment with associated loss of vision, and concussion or intracranial damage. Other deleterious consequences of SIB include reduced social, educational, family, and occupational functioning, with higher risk of placement in more restrictive settings and limited life opportunities.
Standard treatments of SIB in autism and intellectual disability are behavioral and psychopharmacological interventions. While many individuals respond to these modalities, there has long remained a subgroup of treatment-refractory patients who have exhausted dozens of psychotropic medications, years of intensive behavioral therapy, and multiple out-of-home placements and hospitalizations. Such patients may be padded and immobilized head-to-toe in protective equipment, and frequently receive psychotropic medications as chemical restraint—often with limited benefit and high risk of adverse effects. Despite such efforts, these patients often sustain permanent injuries including blindness from retinal detachment and cerebral hemorrhage.2
Recent suggestions that SIB might be one of many symptoms of catatonia in autism spectrum disorders—including mutism, negativism, posturing, rigidity, and repetitive speech and acts—led to treatment trials with ECT, the long-recognized effective treatment for catatonia, with remarkable behavioral improvement and relief.3
Jay is a 19-year-old man with autism and intellectual disability. He was initially hospitalized at age 12 after several years of severe head- and body-directed SIB with frequent facial bleeding, as well as aggressive behaviors toward his family, caregivers, and school staff. SIBs were so intense that a caregiver inadvertently broke Jay’s arm while attempting to block hand-to-head striking. Jay also displayed mood instability with sobbing and wild laughter, irritability, physical hyperactivity, agitation, and insomnia.
He had exhausted multiple drug trials from all US-available psychotropic classes, as well as years of intensive behavioral services. He demonstrated affective and behavioral improvement of a few months’ duration on lithium carbonate, aripiprazole, and riluzole, but deteriorated again with such behavioral dyscontrol that his parents feared their only option to maintain his safety was placement in a locked residential facility.
A trial of 3 times per week bilateral ECT was initiated. Jay demonstrated dramatic reduction in SIBs after just a few treatments, as well as improved sleep and more stable mood. ECT frequency was gradually reduced while monitoring for recurrence of SIB or mood deterioration; ultimately, a maintenance ECT regimen of every 9 or 10 days was established.
Jay was able to remain at home, where he participated fully and safely in family life with his parents and 2 siblings. He continued in a program emphasizing community-based living and functioning activities, and was able to master skills never thought possible for him before, such as independent grocery shopping from a list, followed by check-out with a debit card and meal preparation.
He tolerates ECT well and is able to go to school without incident after early-morning treatment. He remains on a concomitant regimen of lithium and aripiprazole; SIB is limited to rare incidents of hand-biting with no resultant injuries. Jay has received an estimated 290 sessions of ECT over the past 8 years.
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