Date Published: March 23, 2020
The equipment on this hospital floor could be found in most school locker rooms: helmets, knee pads, and arm splints. But the gear is not here to protect athletes from sports injuries; it’s used to protect children and teenagers from themselves.
This is the NBU, short for the Neurobehavioral Unit at Kennedy Krieger Institute, a hospital in Baltimore, Maryland. The NBU specializes in treating self-injury and other severe behavior in youth who have autism and developmental disorders. Many of the patients have hit, poked, scratched, or bitten themselves hard enough to hurt.
“Self-injury is a very severe form of behavior that has one of the highest risks of medical injury,” says psychiatrist Roma Vasa, M.D., of Kennedy Krieger. These violent episodes can lead to cuts and bruises, dental problems, broken bones, concussions, and detached retinas, says Eboni I. Lance, M.D., a Kennedy Krieger neurologist who has studied the behavior.
Described as “debilitating,”1,2 self-injury is relatively common in autism spectrum disorder. Half of people with autism have engaged in self-injury at some point in their lives, with a fourth having the behavior at any given time.3-9 One study found this behavior in children as young as 12 months old.3 Most children stop the behavior as they grow. But for others, it becomes entrenched, leading to repeated injuries, a psychiatric hospital stay, or, in extreme cases, the risk of death.6,10
Despite those statistics, self-injury is not a symptom of autism. Self-injurious behavior is found in people who have other conditions.
Who’s at Risk for Self-injury?
Risk factors for self-injury in people who have developmental conditions include:
- intellectual disability, defined as an Intelligence Quotient score below 70, with or without autism,1,2,11,12
- certain genetic conditions, such as Lesch-Nyhan, Smith-Magenis, and Fragile X syndromes,10,11,13
- serious delays in communication14 and social skills,7 and
- higher rates of repetitive behavior.10,15
Looking at this list, it’s easy to see why self-injury is relatively common in autism. Some risk factors – communication and social problems, and repetitive behavior – lie at the core of autism.
Among children who have autism, self-injury is connected to having aggressive behavior, sleep or mood problems, hyperactivity, and anxiety, according to one large study.16
Self-injury can be particularly frightening because it seems to violate our basic instinct of self-preservation. It also deeply challenges parents’ desire to protect their children. They childproof their homes, buckle their youngsters into car safety seats, and walk them to school, all to shield them from outside harm. But how can parents protect children from a danger within themselves?
Children and teens arrive at the NBU in Baltimore usually after other efforts — school interventions, outpatient therapies, behavior plans, psychiatric drugs — have failed. There, a team of psychologists, psychiatrists, nurses, and others treat their behavior using Applied Behavior Analysis (ABA) techniques, communication training, and medication, explains psychologist Nicole Hausman, Ph.D., senior behavior analyst and director of NBU Therapy Services. Patients stay an average of four to six months. That’s longer than usual for many inpatient units for children who have developmental conditions.
The Behavioral Assessment Begins
At the NBU, a pre-teen boy sat stiffly at a table in a tidy therapy room. A young woman gave him a series of simple commands involving a block and can. Put the block on top of the can. Put the block in the can. The boy’s eyes darted around the room, never quite looking directly at the woman or the block. Yet he silently followed her instructions. He wore protective gear and an inscrutable expression.
When he moved to hurt himself, the woman turned away and stopped giving directions. In another session, when he repeated the behavior, she instead gave him attention. Her co-worker watched through a one-way window in an adjacent booth and took notes on a laptop. How did the boy react to attention, to being ignored? The sessions are designed to replicate real-world conditions, such as when a teacher gives a break to a frustrated student, or when a parent tries to console or distract an upset child.
The data will be analyzed to find the cause of his self-injury and the right treatment. This process is called functional analysis, and some of the research that helped establish its effectiveness took place in that very building almost four decades ago.
Although self-injury is unusual, it loosely resembles a behavior found in many youngsters.
From Toddler Tantrum to Self-Injury
A very mild form of self-injury is common in typically developing children: the toddler tantrum. Think of the two-year-old who flings himself to the ground and pounds his fists, or who bangs his head against his crib. But this is often more theater than self-injury. Toddlers usually stop short of actually hurting themselves. And they grow out of this behavior as they learn the language and social skills to negotiate the world in productive ways.
For decades, medical experts struggled to understand exactly why self-injury persisted, and became chronic and severe, in some people who have developmental conditions. At one time, some psychiatrists associated it with “brain damage” related to intellectual disability. Only in the latter 20th century did they begin treating it as a separate behavioral disorder.17
Many behavior experts believe self-injury is learned, molded by the way people respond to it. Behaviors are triggered by an event and then strengthened or weakened – that is, reinforced – by other people’s reactions.
Every day our behaviors are reinforced by others’ responses. Say you try a new recipe and your family praises you. Their praise reinforces your desire to cook that dish again. After dinner, you tell your son to wash the dishes. He complains, so you do the chore yourself. The next time you ask him to help, he complains again. Why? He’s learned that complaining helps him escape dish duty. You accidentally reinforced an undesirable behavior.
That can happen with self-injury in autism. Some parents may panic when their child bangs his head, explains Thomas Flis, senior behavior analyst and behavioral services manager at Sheppard Pratt, a psychiatric hospital in Towson, Maryland. The parents may give the child his favorite food or toy just to get him to stop. That natural desire to keep the child safe may accidentally reinforce an unsafe behavior. The child may bang his head the next time he wants a treat, especially if he does not have the verbal skills to ask for it, he says.
Getting to the Root of Self-injury
To change a behavior, it helps to know exactly what causes it and what keeps it going. In 1977, psychologist Edward Carr outlined a three-step process for puzzling out the cause of self-injury.11 First, look for a medical explanation, such as an ear infection or a genetic syndrome. Step two: look at the circumstances that increase the behavior. If still drawing a blank, then go to step three: consider if the self-injury is an extreme form of self-stimulation, a repetitive behavior that may serve a sensory purpose. More common forms of repetitive behaviors include rocking, flicking one’s fingers, or flapping hands.
In the early 1980s, researchers at Kennedy Krieger developed and tested procedures for identifying the cause of self-injury in a given person.1 Led by Brian A. Iwata, Ph.D., researchers set up therapy rooms to test the purpose of each child’s self-injury during 15-minute sessions. Sometimes a child would get attention or toys after he hit himself. Other times he would be allowed to escape learning drills after self-injury. Sometimes, the adult would give the child continuous attention, toys, and praise. Children also would be left briefly alone while an adult watched.2
How each child responded to each test condition helped the team uncover the “why” behind these behaviors for each child. Researchers recorded data on 152 people over almost 4,000 sessions at Kennedy Krieger and University of Florida treatment centers.1,2 Some 38 percent of the children hurt themselves to escape a learning drill. About a fourth wanted attention, food, or toys. Another fourth hurt themselves for sensory input. A small number had more than one purpose for their behavior.1,2
With that information, the team crafted individualized treatments, such as teaching and reinforcing useful behaviors to replace self-injury. Iwata and others advocated “functional communication training” to teach children ways to ask for what they want.2 A child would not need to bang his head to get a break, or a drink, if he could point to a picture that would get him the same thing. Teaching people who have limited or no speech how to use picture symbols, iPad applications, or other devices to communicate is considered very effective for self-injury.18
Parent Training: A Vital Part of Treatment
Besides communication training and functional assessments, treatment often involves creating a behavior plan. The plan is a set of procedures for schools and families to follow to prevent or respond to a child’s self-injury.
“Parent training is key,” explains Flis, the behavior analyst from Sheppard Pratt hospital. Sheppard Pratt has a special unit for children and teenagers who have autism and intellectual disability.
“A lot of times we’ll talk with parents who will say that their child engages in a behavior at random and that he can’t control it. We’ll see that the opposite is true, and there are reasons why he’s doing it,” Flis says. Staff share the results of behavior assessments with families, along with steps for managing behavior. It’s important for behavior plans to be easy to follow at home, Flis says. “We want to set up the parents for success.”
Medication and Self-Injury
Doctors also may prescribe medication to reduce self-injury. The U.S. Food and Drug Administration has approved two atypical antipsychotic drugs — risperidone and aripiprazole — to treat irritability in children with autism who are ages 6 and older. Irritability is a broad term that may include behavior such as self-injury.12 These medicines have similar, sometimes serious side effects, including a risk of weight gain, fatigue, and involuntary movements that may become permanent. Doctors may prescribe different drugs for other conditions, such as those used for depression, anxiety, hyperactivity, or mood disorders. About 70 percent of people who have autism may have another mental disorder that affects mood or behavior.19
Still, despite advances in treatment, self-injury is not easy to stop in some cases. Medications don’t always work or side effects may prove too troublesome for some people. Behavioral treatment can be hard to find in some communities, can be time-consuming, and requires consistency on the part of schools and families.
Some researchers lament the difficulties that people who have self-injury face in getting prompt, effective, and, most important, early treatment in their communities. “Despite nearly 50 years of research, there is little evidence that the most robust findings have been translated into widely available effective interventions or strategic initiatives,”10 complained two British researchers in 2015.
Nonetheless, experts say parents should stay calm if their child hits herself for the first time. Avoid doing something that could reinforce the behavior. For example, don’t give it too much attention or allow the child to get out of a task, Hausman explains. If the behavior is severe or the child could be hurt, calmly try to block the behavior.
If the behavior continues, she says, see a behavior analyst or psychologist with experience in treating self-injury, “sooner rather than later.” Parents also can consult their child’s doctor, the professional who diagnosed their child, and a school psychologist. And remember, she says, just because intervention is necessary, it does not mean the behavior will become chronic and severe, or lead to a psychiatric hospital stay. “It’s important not to panic.”
A version of this article appeared on IANcommunity.org in 2015. It was updated in 2020 for SPARK.
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- American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association (2013)