Inspectrum

Reports from the world of severe autism.

To Cage or Not to Cage? That Is Not the Question

Parents of autistic kids need to know about medical treatments for behaviors.

In the wake of the arrest earlier this month of a California couple accused of keeping their 11-year-old autistic son in a cage came the expected cycle of response. First, angry condemnation, such as that expressed by a commenter on the website Popsugar who wrote, “I am outraged by this family. How cruel . . . these parents should be treated the same way.” But following quickly were more sympathetic readers, such as this one from the Toronto Sun who observed, “Without knowing the details, the cage may have been a short-term solution to prevent this child from harming himself or others. Either way, my heart goes out to them.”

I follow this cycle every time a story breaks about a parent who tried to kill a severely autistic child, or who succeeded in killing that child, or who killed that child and then committed suicide. As the parent of a severely autistic son whose aggressive behaviors were so dangerous he spent ten months hospitalized at the Kennedy Krieger Institute when he was only nine years old, I appreciate those who take the time to participate in these online forums, who try to describe – for the vast majority of the public that has no idea – what life with a severely autistic child can be like: dangerous self-injury and aggression, property destruction, elopement, insomnia. Not as a justification for the harm or mistreatment of autistic children, but as an explanation, a context for these acts that seem, on the surface, so monstrously incomprehensible.

As important as these posts are – because, as one Los Angeles man noted, “There is a media blackout of very severe cases of real autism. The media on this issue are as lost as a blind man in a snowstorm,” a sentiment with which I completely agree – a critical part of this conversation has been notably absent: information about the medical treatment of violent behaviors in autism. Amidst the calls for more support for these families, for funding and respite and residential services, where is the discussion about the medical treatments that might very well have kept these nightmare scenarios from unfolding in the first place – and will very likely keep similar ones from occurring in the future if parents, caregivers, and providers are all thoroughly informed?

A critical point that is often overlooked is that, for many kids, violent behaviors are not part of their autism but caused by secondary disorders that can be separately treated: one 2008 study found that a whopping 70 percent of autistic individuals suffer from co-morbid psychiatric conditions, which can include mood disorders, anxiety, and catatonia. Generally speaking, behaviors that occur unpredictably and across all environments are likely due to neurological impairment and require medical treatment. In contrast, those behaviors triggered by certain stimuli (such as tantrums that occur when favorite items are withheld or demands are imposed) are best managed behaviorally.

So what medical treatments are available? Although countless drugs have been prescribed to treat violent behaviors in autistic children, since these can be quite intractable, only two have multiple studies establishing their efficacy in this specific population: Risperdal and Abilify, both antipsychotics, and this is where psychiatrists generally start.  

But these medications failed to control my son Jonah’s aggression and self-injury, as did anti-depressants, benzodiazepines, anti-seizure drugs, and stimulants. And although his behavior was temporarily stabilized on medication during his inpatient stay, by the following year his rages had returned. We finally succeeded in stopping them with electroconvulsive therapy (ECT), which Jonah has been getting for over four years. ECT is another well-researched procedure, and although the vast majority of studies focus on its use treating mood disorders in typical adults, an increasing number document its success treating dangerous behaviors in the developmentally disabled. These include case reports from Kennedy Krieger, Mt. Sinai Hospital, University of Mississippi, University of Michigan, and University of Utah, among others.

What about the future? Anecdotal reports flourish online about the successful control of aggression and self-injury in autistic kids with cannabis, although the classification of marijuana as a Schedule 1 controlled substance makes it extraordinarily difficult to study in the United States. Hopefully, that will change as more and more states legalize medical marijuana, because it has fewer and more benign side effects than antipsychotics and is cheaper and less invasive than ECT.

Or perhaps, years from now, these profoundly ill children will find relief through the use of compounds which are just starting to generate buzz: ketamine, oxytocin, Insulin-like Growth Factor. What matters is that the conversation is ongoing, that research and experience are continually shared among scientists, practitioners, and caregivers. Perhaps some find it unsavory to imagine autistic kids receiving ECT, or being fed pot brownies, but there’s no doubt that the untreated reality is much more disturbing: kids pounding themselves in the face until they go blind; restrained on locked wards (or in dog crates); or suffering, or committing, irreparable physical harm. The quality of life of autistic children with aggression and self-injury, as well as those of their entire families, depends first and foremost on stopping these behaviors. It’s incumbent on us to keep the conversation going until that day arrives.

Amy S.F. Lutz is the author of Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children. She is president of the EASI Foundation.

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