Every time I write about extremely aggressive or self-injurious behaviors – either those my son Jonah exhibited before he was medically stabilized in 2010, or those of other autistic teens I know who have detached their own retinas or smashed their heads against walls or floors to the point of traumatic brain injury – several commenters inevitably blame us, the parents, for just not understanding what our children are trying to communicate. For example, “BP” wrote, “You know what the key is? FIND A MEANS OF COMMUNICATION THAT WORKS FOR THEM…Just because they don’t communicate the way you do doesn’t mean they don’t understand or anything. It just means that YOU don’t understand them and are actually refusing to do so.” Echoed “Lara,” “GET IT? Any violence that happens is a direct result of an Autistic person being misunderstood and not appropriately accommodated.” And “joqatana” stated: “It’s about us trying to communicate with you and being punished for it from childhood because you refuse to learn OUR language…Your kid is trying to tell you something and YOU AREN’T LISTENING.”
If there’s anything more heartbreaking than trying to block your own child from punching, scratching, and kicking you, or physically restraining him from smacking himself in the face or even biting through her own tongue, it’s the feeling that you are somehow responsible – that there is some communication system or reinforcement schedule or choice you could offer that would keep your family safe. University of Michigan child psychiatrist Dr. Neera Ghaziuddin has seen many parents come to her office struggling with this guilt – even, she says, when there’s nothing they could have done.
It’s true that many autistic behaviors are caused by environmental, or operant, factors. A Functional Behavioral Assessment (FBA) will often reveal that individuals engage in mild aggression and/or self-injury to escape a demand (like a school task), to access a highly preferred item, or to get attention. But in a minority of cases, the FBA will determine that the behaviors are automatic, or intrinsic – in other words, they have no environmental triggers, occurring unpredictably and across all settings. These behaviors, Dr. Ghaziuddin explains, are biologically based, often driven by a co-morbid neurological or psychiatric illness like agitated catatonia or a mood disorder. And, she notes, “The more severe the behavior gets, the less likely it can be explained by operant factors alone.” These include violent behaviors intense enough to cause significant or permanent injury – such as concussions, hematomas, broken bones and scars.
Critical for parents and providers to understand is that, as Dr. Ghaziuddin emphasizes, individuals have “little to no control” over intrinsic behaviors. This means that they are not communicative acts – except in so far as they signal an underlying biological issue. It also means that a behavior plan alone won’t stop the aggression or self-injury, since behavior modification only works on deliberate, intentional acts. This is not to say that behavior plans don’t play a significant role, since even behaviors that are intrinsic in origin are often inadvertently reinforced (kids learn, for example, that when they punch the windows their mothers come running), resulting in cases in which intrinsic and operant behaviors coexist. But psychotropics are generally required to resolve severe aggression and self-injury. Commonly prescribed medications include benzodiazapines, mood stabilizers and antipsychotics. The good news, says Dr. Ghaziuddin, is that “the majority will start improving,” but cautions that “improvement fluctuates, and can take weeks to months.”
None of this is meant to suggest that families and providers shouldn’t be dedicated to teaching diverse communication systems, alleviating frustration, and fostering autonomy – of course we should, and we are. But we also need to stop pursuing strategies that are bound to fail to address what in many cases are treatable symptoms. Every day of uncontrolled aggression and/or self-injury not only places the autistic individual and his or her caregivers at terrible risk, but it also profoundly reduces the quality of life of entire families.