Interactive Autism Network at Kennedy Krieger Institute
Date Last Revised: February 8, 2017
Date Published: December 16, 2015
The equipment in the NBU, as it's called, 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 some children and teenagers from themselves.
The NBU, short for the Neurobehavioral Unit at Kennedy Krieger Institute, specializes in treating self-injury and other severe behavior in youth with autism and other developmental disorders. Many of the patients here 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," said 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, said Eboni I. Lance M.D., a Kennedy Krieger neurologist who has studied the behavior.
Described in research articles as "bizarre" and "debilitating,"1, 2 self-injury is relatively common in autism spectrum disorder (ASD). Half of people with ASD 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 self-injurious behavior in children as young as 12 months old.8 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.3, 10
Despite those statistics, self-injury is not a symptom of autism. Self-injurious behavior, SIB for short, is found in people with other disorders. (Typically-developing youth may engage in a form of self-harm, such as cutting and binge-purge eating, but their risk factors are different. People with autism also may have those types of self-harming behaviors.)
Who's at Risk For Self-Injury?
Risk factors for self-injury in people with developmental disorders include:
- intellectual disability (Intelligence Quotient score below 70), with or without autism,1, 2, 13, 14
- certain genetic conditions, notably Lesch-Nyhan, Smith-Magenis, and Fragile X syndromes,10, 12, 14
- serious delays in communication15 and social skills,16 and
- higher degrees of repetitive behavior.10, 17
Looking at this list, it’s easier to see why self-injury is common in autism. Some risk factors – communication and social problems, and repetitive behavior – lie at the core of autism.
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 offspring. They childproof their homes, buckle their youngsters into car safety seats, and walk them to school when they're older, all to shield them from outside harm. But how can they protect a child from a danger within himself?
Children and teens arrive at the NBU in Baltimore usually after other efforts – school interventions, outpatient therapies, behavior plans and/or psychiatric drugs – have failed. There, a team of psychologists, psychiatrists, nurses and others treat their behavior using Applied Behavior Analysis techniques, communication training, and medication, explained Jennifer Zarcone, Ph.D., BCBA, Senior Behavior Analyst at the NBU. Patients stay an average of four to five months. That’s longer than usual for many inpatient units for children with developmental disorders.
Patients in the Autism Inpatient Community (AIC), a research collaboration of six hospitals, typically stay from 7 to 40 days, depending on the facility and the patient. More than a fourth of those youth, ages 4 to 20, hit or injure themselves at least daily.19 Many patients are in the throes of a behavioral crisis, having been admitted after visiting an emergency room, said Thomas Flis, BCBA, LBA, LCPC, senior behavior specialist at Sheppard Pratt Health System, an AIC site outside of Baltimore.
The Behavioral Assessment
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 issuing 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 redirect 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.
What causes self-injury to take root in some people, and how can you stop it?
From Toddler Tantrum to SIB?
A very mild form of self-injury is common to 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 with developmental disorders. Some psychiatrists associated it with "brain damage" related to intellectual disability, and only in the latter 20th Century did they begin treating it as a separate behavioral disorder.20
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 – reinforced, in the behavioral lingo – by other people's reactions.
Let’s say you tried a tasty new recipe and your family praised you. Their praise would reinforce your desire to cook that dish again. After dinner, you tell your son to clean 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’ve inadvertently reinforced an undesirable behavior.
Similarly, a child with autism might bang his head more often if he discovers that it gets him something he wants, such as attention from an adult, food, toys, or escape from a stressful situation. The stress could be anything: social situations, loud noises, therapy or schoolwork.
Fits of Self-Destruction
In 1965, Life magazine described a new behavior therapy for autism developed by psychologist O. Ivar Lovaas at University of California-Los Angeles. His patients included a nonverbal boy named Billy. "Billy, 7, like so many of the thousands of autistic children in the U.S., would go into gigantic tantrums and fits of self-destruction, beating his head black and blue against walls."21
Dr. Lovaas sought to mold behavior by rewarding a child for desirable behaviors, such as following a simple command or attempting to speak, and punishing him for undesirable ones, such as tantrums or self-injury. Children would receive food or affection for correct responses, and a scolding or a slap for wrong ones.21
Although considered effective at the time, this form of physical punishment fell out of favor, and it was later abandoned by Dr. Lovaas. Most behaviorists used other methods of eliminating problem behaviors, using techniques that did not involve scolding or hitting.
Getting to The Root of Self-Injury and Treatment
Parent training is key.
To change a behavior, it helps to know exactly what is causing it, and what is reinforcing it. In 1977, psychologist Edward Carr outlined a three-step process for puzzling out the cause of self-injurious behavior.14 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 SIB 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 then-NBU Director 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. Children also would be left briefly alone while an adult watched. One girl stopped injuring herself during the "alone" test; for her, self-injury was a way to escape the presence of adults, or the demands they might place on her. In another test, the adult would give the child continuous attention, toys and praise.2
How each child responded to each test condition helped the team uncover the "why" behind these challenging behaviors for each child. Dr. Iwata's team recorded data on 152 people over almost 4,000 sessions lasting a total of 1,000 hours at Kennedy Krieger and the University of Florida treatment centers.2 Some 38 percent of the children hurt themselves as a form of escape; about a fourth wanted attention, food or toys; and another fourth hurt themselves for sensory input. A small number had more than one purpose for their behavior.2
With that information, the team crafted individualized treatments, such as teaching and reinforcing useful behaviors to replace self-injury in the child’s repertoire. Dr. Iwata and others advocated "functional communication training" to teach children ways of requesting what they want.2 A child who could point to a picture to communicate his need for a break or a drink would not need to bang his head to achieve the same purpose. Functional communication training is now considered very effective for SIB.22
As the use of functional assessments grew over the years, autism experts shifted their focus away from restrictive treatments for SIB, such as restraining a child, and toward teaching and reinforcing desirable behaviors to replace self-injury.23
That often means drafting behavior plans – procedures for teachers, caregivers and parents to follow – to prevent or respond to self-injury and other challenging behavior. Children discharged from a psychiatric unit often come home with a behavior plan. At Sheppard Pratt Health System, staff members share their assessment results with parents, along with steps for managing behavior at home.
"Parent training is key," said Mr. Flis, senior behavior specialist at Sheppard Pratt. "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." Mr. Flis said it's important to provide families with a behavior plan that's easy enough to implement at home. "We want to set up the parents for success."
Medication and Self-Injury
Another instrument in the treatment toolbox is medication. The U.S. Food and Drug Administration has approved two atypical antipsychotic drugs, risperidone and aripiprazole, for treatment of irritability in children with autism ages 6 and older. Irritability generally refers to tantrums, aggression and self-injury.13 Those medicines carry 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 with ASD may have another mental disorder that affects mood or behavior.24 Children admitted to an AIC hospital have been taking an average of three medications.25 Doctors there typically review their medications and dosages to ensure they are working effectively.
Still, despite advances in behavior and drug treatment, self-injury is not easy to stop. Medications don't always work or their side effects may prove too troublesome for some people. Behavioral treatment can be hard to find in some communities, time-consuming, and require consistency on the part of schools and families. As Dr. Iwata and others noted in 2002, "it is discouraging to find that SIB continues to be a disorder that is very difficult to treat."23
Some researchers lament the difficulties people with self-injury face in getting prompt, effective, and, most importantly, early treatment as outpatients. “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.
For years, doctors have pushed for earlier autism diagnosis and intervention, so as to lessen symptoms and increase skills when a child’s brain was most receptive. Could a similar approach reduce self-injury? A team at Kennedy Krieger wanted to find an early warning sign of self-injury. They theorized that a history of autistic regression, which occurs when a child loses social, language or behavioral skills between ages 1 to 2, puts children at risk for SIB.
"We were looking for risk factors that might alert a practitioner that a child was at risk for self-injury, with the hope that he might be referred early for intervention and that would prevent a more serious problem from developing," said Dr. Lance, a member of the research team.
After studying the records of 125 hospital patients, however, they found no connection.26 Dr. Lance said larger studies that looked at more or different conditions might uncover a risk factor. In the meantime, doctors encourage parents and teachers who see SIB in children to seek treatment promptly. "Parents should contact their pediatrician, neurodevelopmental physician and/or behavioral therapist as soon as possible if their child starts exhibiting SIB," Dr. Lance said.
- Autism Speaks' Parent Tool Kits: Challenging Behavior Tool Kit, ATN/AIR-P Parent's Guide to Applied Behavior Analysis, and Autism: Should My Child Take Medicine for Challenging Behavior?
- IAN article on Diagnosing and Treating Extreme Behavior in Children with Autism
- IAN article on Behavioral Therapies: Key Interventions in ASD
- Kennedy Krieger's Applied Behavior Analysis: Overview and Summary of Scientific Support
- Iwata, B.A., Dorsey, M.F., Slifer, K.J, Bauman, K.E. & Richman, G.S. (1994) Toward a Functional Analysis of Self-Injury. Journal of Applied Behavior Analysis, 27, 197-209. Reprinted from Analysis and Intervention in Developmental Disabilities, 1982, 2, 3-20. Abstract.
- Iwata, B.A., Pace, G.M., Dorsey, M.F., Zarcone, J.R., Vollmer, T.R., Smith, R.G. et al. (1994) The Functions of Self-Injurious Behavior: An Experimental-Epidemiological Analysis. Journal of Applied Behavior Analysis, 27, 215-240. Abstract.
- Minshawi, N.F., Hurwitz, S., Fodstad, J.C., Biebl, S., Morriss, D.H. & McDougle, C.J. (2014) The association between self-injurious behaviors and autism spectrum disorders. Psychology Research and Behavior Management, 7, 125-136. Abstract.
- Bodfish, J.W., Symons, F.J., Parker, D.E. & Lewis, M.H. (2000) Varieties of repetitive behavior in autism: Comparisons to mental retardation. Journal of Autism and Developmental Disorders, 30, 237–243. Abstract.
- Baghdadli, A., Pascal, C., Grisi, S. & Aussilloux, C. (2003) Risk factors for self-injurious behaviours among 222 young children with autistic disorders. Journal of Intellectual Disability Research, 47, 622–627. Abstract.
- Matson, J.L., Fodstad, J.C. & Rivet, T.T. (2009) The relationship of social skills and problem behaviors in adults with intellectual disability and autism or PDD-NOS. Research in Autism Spectrum Disorders, 3, 258–268. Abstract.
- Rojahn, J., Wilkins, J., Matson, J.L., & Boisjoli, J. (2010) A Comparison of Adults with Intellectual Disabilities with and without ASD on Parallel Measures of Challenging Behaviour: The Behavior Problems Inventory-01 (BPI-01) and Autism Spectrum Disorders-Behavior Problems for Intellectually Disabled Adults (ASD-BPA). Journal of Applied Research in Intellectual Disabilities, 23,179–185. Abstract.
- Fodstad, J.C., Rojahn, J. & Matson, J.L. (2012) The emergence of challenging behaviors in at-risk toddlers with and without autism spectrum disorder: A cross-sectional study. Journal of Developmental and Physical Disabilities, 24(3), 217-234. Abstract.
- Baghdadli, A., Pascal, C., Grisi, S. & Aussilloux, C. (2003) Risk factors for self-injurious behaviours among 222 young children with autistic disorders. Journal of Intellectual Disability Research, 47, 622-7.
- Oliver, C. & Richards, C. (2015) Practitioner Review: Self-injurious behavior in children with developmental delay. The Journal of Child Psychology and Psychiatry. Doi: 10.1111/jcpp.12425. Abstract.
- National Institutes of Health Genetics Home Reference. (2013, December) Smith-Magenis syndrome. Retrieved from http://ghr.nlm.nih.gov/condition/smith-magenis-syndrome.
- Symons, F.J., Clark, R.D., Hatton, D.D., Skinner, M. & Bailey Jr., D.B. (2003) Self-injurious behavior in young boys with fragile X syndrome. American Journal of Medical Genetics, Part A, 118A(2):115-21. Abstract.
- Carroll, D., Hallett, V., McDougle, C.J., Aman, M.G., et al. (2014) Examination of aggression and self-injury in children with autism spectrum disorders and serious behavioral problems. Child and Adolescent Psychiatric Clinics of North America, 23(1), 57-72. Abstract.
- Carr, E.G. (1977). The motivation of self-injurious behavior: A review of some hypothesis. Psychological Bulletin, 84(4), 800-816.
- McClintock, K., Hall, S. & Oliver, C. (2003) Risk markers associated with challenging behaviours in people with intellectual disabilities: A meta-analytic study. Journal of Intellectual Disability Research, 47(6):405–416. Abstract.
- Matson, J.L., Wilkins, J., & Macken, J. (2009) The relationship of challenging behaviors to severity and symptoms of autism spectrum disorders. Journal of Mental Health Research in Intellectual Disabilities, 2(1): 29–44. Abstract.
- Oliver, C., Petty, J., Ruddick, L., & Bacarest-Hamilton, M. (2012) The association between repetitive, self-injurious and aggressive behavior in children with severe intellectual disability. Journal of Autism and Developmental Disorders, 42, 910-919. Abstract.
- Wachtel, L.E. & Hagopian, L.P. (2006) Psychopharmacology and Applied Behavioral Analysis: Tandem treatment of severe problem behaviors in intellectual disability and a case series. The Israel Journal of Psychiatry Related Sciences, 43(4), 265-74. Abstract.
- Flis, T., Smith, K.A., Chappell, R., Handen, B.L. & Siegel, M. (2015) Preliminary Analysis of the Function of Self Injurious Behavior in the Autism Inpatient Collection (AIC) Sample. Delivered at the International Meeting for Autism Research May 15, 2015. Retrieved from https://imfar.confex.com/imfar/2015/webprogram/Paper20299.html
- American Psychiatric Association Task Force 30. (1991). Report of the Task Force on Psychiatric Services to Adult Mentally Retarded and Developmentally Disabled Persons. Washington, D.C.: American Psychiatric Association, p. 7.
- Grant, A. (1965, May 7). Screams, Slaps and Love. Life. Pages 92-95.
- Rooker, G.W., Jessel, J., Kurtz, P.F. & Hagopian, L.P. (2013) Functional communication training with and without alternative reinforcement and punishment: An analysis of 58 applications. Journal of Applied Behavior Analysis, 46, 708–722.
- Kahng, S., Iwata, B.A., & Lewin, A.B. (2002) Behavioral treatment of self-injury, 1964 to 2000. American Journal on Mental Retardation, 107(3), 212-221. Abstract.
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. (Pg. 58-59)
- Pedapati, E.V., Wink, L.K., Erickson, C., Gabriels, R., Beresford, C.A., Kaplan, D., Morrow, E.M & Siegel, M. (2015) Preliminary Characterization of Medication Use in a Multicenter Sample of Pediatric Inpatients with Autism Spectrum Disorder. Delivered at the International Meeting for Autism Research May 15, 2015. Retrieved from https://imfar.confex.com/imfar/2015/webprogram/Paper19217.html
- Lance, E.I., York, J.M., Lee, L-C., & Zimmerman, A.W. (2014) Association between regression and self injury among children with autism. Research in Developmental Disabilities, 35, 408-413. Abstract.