What are the basic approaches to accessing individuals who are displaying self-injury?

In terms of assessing those who display self-injury, we have learned that the reason for self-injury, what we refer to as the function, is more important than the form or the appearance of the behavior itself. Therefore, when an individual comes to our clinic, we conduct an assessment called a functional analysis. A functional analysis literally means that we are assessing the function that the behavior serves the individual. There are two major categories of functions: social functions refer to behavior that is maintained by reinforcers in the environment. The most common reinforcers are gaining attention, preferred items, and escape from demands. The second category is biologic functions, and these refer to behaviors that occur in response to biologic events such as pain.

What types of clinical services do you offer for individuals who display severe behavior problems?

We offer, at the Center for Disabilities and Development, an outpatient service and an inpatient service that are referred to as biobehavioral services. The outpatient clinic occurs on Thursdays and the evaluation takes about two hours. The inpatient service involves a 10- to 14-day admission and is possible only if the treatments recommended following outpatient evaluation fail to be effective.

What is the process in performing the functional analysis on patients?

In the outpatient clinic we strongly encourage parents, teachers or other care providers to conduct the assessment with coaching from our clinic team. The assessments involve analog conditions to identify the person's response to various environmental events. For example, we will often ask the parent to place reasonable demands on their child and our evaluation determines if the child engages in self-injury to escape those demands. Several assessment conditions such as that one are conducted by the care providers to determine if a consistent pattern of behavior emerges.

Do children outgrow severe behavior problems?

The children we work with have a combination of both developmental and behavioral problems. Some of these children stop engaging in severe behavioral problems as they mature but most require some form of intervention. Our best advice is to seek intervention as quickly as possible and to not assume that the problem will go away on its own.

Is a social worker part of the interdisciplinary team, and if so, what is his or her role in the analysis and treatment process?

Yes a social worker is part of our interdisciplinary team. He serves a number of roles with three of the more important ones being. 1) He helps families to identify and acquire in-home services and community-based services, 2) He helps parents communicate to the child's siblings about why self injury or aggression is occurring, 3) He helps parents develop normalized lifestyles while they are dealing with the problem behavior.

Children diagnosed with ADHD tend to have aggressive behavior--can this also be related?

We know that children with Attention Deficit Hyperactivity Disorder have a variety of problem behaviors, and we believe that a similar approach to treatment can be very beneficial. We further believe that a behavioral approach to treatment should be blended with a comprehensive assessment of learning. Because we believe that challenging behavior is often due to a complex interaction of environmental and learning variables. There are clinics at the University of Iowa Children's Hospital that specialize in conducting these types of assessment and we rarely see those children in the clinic we are discussing today.

How would you assess behaviors that are high intensity but low frequency?

Behaviors that are high intensity but low frequency are the most difficult to assess in our outpatient clinic. In general, functional analysis techniques have not been as effective with these behaviors as with high rate behaviors. We are currently developing alternative assessments that involve the choices that the individual makes. We attempt to use this information to develop behavioral intervention.

What do you suggest for assessing behaviors that start with a mild behavior but then escalate to aggression?

We have evaluated numerous individuals who display what we refer to as a chain of behaviors. The chain usually starts with mild behavior problems and then escalates to more severe behavior. The first step in assessment is to determine if both the mild behavior and the more severe behavior serve the same function. If so, then treatment is based on the more mild behavior problem because it occurs first in the chain. There are two excellent articles in the Journal of Applied Behavioral Analysis, one by Joe Lalli and the other by Dave Richman. These provide good examples of how to assess these types of chains.

You indicate a social worker is part of the interdisciplinary team--does this seem to work better for the patient in a group setting or one-on-one?

We have recently begun doing more and more consultations over the Iowa Communications Network--an interactive television network--and our entire team is getting more comfortable working within a group situation. Depending on the issues, I still believe that one-on-one consultation between a parent and a professional is needed because of issues such as privacy and because of embarrassment. In general, we prefer to have one-on-one consultation done initially with follow-up often done as part of a group or team.

When do you stop seeing the child once treatment is in place ?

In the ideal world, we are consulting with a parent who is already working with a local team of service providers. Our task is to suggest treatment options and the parent and team then determine how to conduct the treatment. When that is available we often have no role in ongoing treatment other than to offer suggestions and encouragement. In other cases the care provider is not working with a local team, and we attempt to help them find that team. If a local team is not available then we attempt to help the care provider via follow-up phone calls, Iowa Communication Network (ICN) follow-up, or repeated contact in our outpatient clinic.

What is your definition of "self-injurious" behavior?

For the population that we serve, we define self injury as repeated motor movements that cause tissue damage due to their frequency, intensity or duration.

How would you envision functional assessments being conducted in classroom settings?

A colleague of mine in the department of Pediatrics, Dr. Linda Cooper-Brown, proposed a model that was published in the Journal of Applied Behavior Analysis in 1992. I still consider it to be the best approach. In general, the student's educational team formulates hypotheses about why the problem behavior is occurring. They then test those hypotheses in the course of the child's normal school day.

As an example, assume that the child's challenging behavior is hypothesized to occur to gain attention. Assessment times would then occur when the child has attention and when the child does not have attention. If the hypothesis is correct, it should be the case that far more problem behaviors occur when the child does not have attention. Once the hypothesis is confirmed, then the team can meet with the parents and the child to determine intervention options. For very severe behavior problems I would refer interested folks to an article that was just published in the Journal of Behavior Disorders by Doug Penno.

They offer a slightly different approach that was used in the Waterloo, Iowa, school system. Another article by Gary Fasso in the Journal of Applied Behavior Analysis describes how functional analysis as we use it in our clinic can be used in a school program for students with autism.

How do physicians and other health care providers view these types of assessments?

The response that we have received has been overwhelmingly favorable. The physicians that we work with like our systematic approach to evaluating the role of the environment. We have received eight years of funding from the National Institute of Child Health and Human Development to further evaluate the use of these procedures in home settings. We can discuss that research more if anyone is interested, but the funding suggests acceptance by the medical community. Finally the use of functional analysis in hospital settings was reviewed by the National Institute of Health in 1988 as part of a consensus conference, and the conclusion was that functional analysis was a useful technique.

Given your definition of self-injurious behavior, do you see any difference between self-injury and the term "self-mutilation" that is often used with populations that do not necessarily have developmental disabilities? Would you conduct the same type of assessment and treatment with individuals who are reported to engage in "self-mutilation"?

As far as I know, no research has been conducted with the group that you are describing. I am reluctant to generalize from our own studies and clinical experiences because I have not worked with that population.

Are the research journal articles you mention available on-line?

The Journal of Applied Behavior Analysis has a web page that I have found to be very user friendly. All of the articles in that journal are indexed and at least the abstracts of every article is available on-line. I am not sure if the Journal of Behavior Disorders has a web page.

At what age do you initiate assessment and treatment?

We have evaluated children as young as 14 or 15 months and in general we believe that assessment and treatment should begin as early as possible. If the behavior is self-injurious, meaning that it is causing tissue damage, I highly recommend that you seek professional consultation as soon as possible.

How do you select interventions for children who engage in self-injurious behavior that is maintained by more than one of the reinforcers you mentioned? Do you tackle one function at a time?

When treatments were first based on functional analysis results, it was usually based on one function at a time. I think this was a mistake and that instead, we have to treat all functions at the same time. Sometimes this means that the treatment package is quite complex, but that does not necessarily have to happen. Sometimes it is simply a matter of using common sense and being practical. As an example, let's assume that challenging behavior occurs to both gain attention and escape demand. If we teach the child to request a break, we only treat the escape function. If we teach the child to request attention, then we only treat the attention function. However, if we treat the child to request help or assistance, we can effectively treat both the escape and the attention functions.

In your years of treating this population, do you believe the incidence of self-injurious behavior is increasing, decreasing, or staying the same?

This is a difficult question to answer because so many changes in the services system have occurred in the last 20 years or so. Historically, I think that professionals grossly underestimated the number of children with developmental disabilities who engaged in self-injury or aggression. Parents have told me that when they reported these behaviors to the child's physician, they were ignored and were told that these types of behaviors were related to the child's level of mental retardation or autism. In at least some of these cases, we have looked in the medical records and there is no indication that self-injury and aggression were ever discussed. I also believe that parents were often reluctant to discuss these problems because they were concerned that professionals would accuse them of being bad parents. I am hopeful that now parents believe that they can openly discuss these issues and that we are now more willing to listen. We are now seeing far more young children with self-injury and aggression, but it may be that this is occurring because the parents are more willing to discuss the problem and we are more willing to listen.

What happens if you can't find an environmental cause for the behavior?

This has been quite rare in our clinical work, somewhere under 5% of the individuals we have evaluated appear to engage in challenging behavior that is not influenced by the environment. Historically, the treatment of choice for these children was medication treatment and that is still the most common treatment option. Two colleagues of mine, Wendy Berg and Joel Ringdahl, recently received a grant from NIH to develop better assessment methods for these types of behaviors.