Self-injurious and Stereotypic Behaviour: Commentary on the Current State of Knowledge

Convenor: Aldred H. Neufeldt
Discussants: Douglas Biklen, Maurice Feldman, Robert Jones, and Stuart McDonald

Introduction

There are few phenomena in the human service context that create more intense concern and reaction than people behaving in a way that is self-injurious or stereotypic. Though different in many respects, both signal that there is something outside of the ordinary experience going on, eliciting responses of mystification, avoidance, and/or fear.

Parents observing such behaviour experience shame, concern over the physical well-being of their daughter or son, and frustrated helplessness over the seeming inability of caregivers and professionals to do something. Professionals and caregivers, too, commonly have experienced a sense of helplessness. Theories of causes have varied considerably, from biological to psychological to environmental. Indeed, all three may well be involved, depending on the person and circumstance. Regretably, in the name of saving the person from serious personal harm, forms of intervention sometimes are introduced that most of us would view as abusive. Then, of course, there is the person who engages in the behaviour. Although the centre of attention, this individual until quite recently has been overlooked as a source of informaton that might help reduce or eliminate these behaviours which to most everyone is so troubling.

To gain some insight as to what our current state of knowledge is, a number of individuals knowledgeable in the field were invited to participate in a ‘virtual discussion’ on the topic. Those participating are Doug Biklen of Syracuse University in Syracuse, New York; Maurice Feldman of Queens University, Kingston, Ontario; Stuart McDonald of Grant McEwan College, Edmonton, Alberta; and, Robert Jones of the University of Wales in Bangor, U.K. Several others were invited to participate, but for various reasons were unable to do so.

The ‘virtual discussion’ made use of internet technology, with three questions posted on a web-site. Each participant was invited to address question one in the first round, and then, in a second round, add comments and address questions two and three. Time constraints imposed by the Convenor made it difficult for all participants to comment equally, given their own busy schedules. Never-the-less, the comments that follow provide a succinct summary of the current knowledge and issues as seen by this group of experts in the field.

The material below is organized by question, with comments from the discussants presented in the order they were received.

Question 1: What do we know about factors (e.g. environmental, biological, learning, other) that contribute to the emergence of stereotypic and self-injurious behaviour? How strong is the evidence?

Doug Biklen: I think it is important to ask several questions in relation to the question. What kinds of evidence do we (anybody) consider in relation to stereotypic actions or self injury? I'm most interested in reflections from people who struggle with self injury, for example. Any interpretation of such actions (i.e. self injury) are just that, interpretations. We always must ask ourselves, "how do I know what someone else knows" or "how do I know what the other person experiences." The field of developmental disabilities is filled with commentary in which scholars of disability as well as other professionals speak voluably about what the person with a disability experiences. My sense of this is that it is dangerous precisely because it is presumptuous.

So what do we know? I think that if we listen to Donna Williams, author of many books including "Somebody Somewhere," "Nobody Nowhere," and "Autism, An Inside-Out Approach," we see explanations of behavior that are different than many professional explanations. She speaks of the important role that anxiety can play in leading people to unusual behavior. I have spoken with people with autism who have related self abuse to extreme anxiety. So this may be one explanation. Sellin, in his autobiography, "I don't want to live inside me anymore" (the American title of his book which was first published in Germany) gives advice to his parents to talk about current affairs so that he can think about them and then later break out of his unusual behaviors and participate.

In his book "Out of Silence," Russel Martin describes a scene in which his nephew Ian becomes very volatile when faced which changes in routines; yet, Ian says, despite the really difficult behavior, including screaming and crying, that he truly wants to have his parents institute changes (e.g. in movies that he watches and food he eats). In other words, he chooses to work through the difficult behavior in order to broaden his experiences. Clearly, a number of people relate anxiety to difficult behavior.

But again, I'd hesitate to say "we (meaning experts) know such and such....." Rather, I'm in favor of listening to people with different disabilities and learning from them. Of course I know this does not resolve the problems of understanding people who do not have an effective means of communication. I suppose a next best strategy would be to try and extrapolate from the experiences and perspectives of people who do speak to those who cannot. Donna Williams describes her various approaches with nonspeaking people, based on her own experiences; she does this in the book "Somebody Somewhere."

Robert Jones: This is a huge question. There is much we know and there is also so much that we don’t know. Also, as in many aspects of life, it appears that the more we learn, the more we find out how little knowledge we really have. I completely agree with Doug that the starting point is the views of individuals themselves. It is vital that we listen openly and without any theoretical defensiveness and that we listen to sufficient numbers of people. Jared Blackburn has a page on the world wide web which he has titled "An insider’s view of Autism". He expresses his feelings about the complexity of these behaviours clearly:

"I know that at least some of the things I do are self-stimulatory (‘stimming’). I think there is a problem in that there are two different types of behavior; ‘stimming’ and ‘stereotypies’ which happen to largely overlap - unfortunately, some people now think that stereotypies are attempts to communicate, and are never stimming (and they're WRONG). Anyway, I can imagine that someone might do these sort of things out of frustration caused by not being able to communicate (as opposed to as an actual means of communication) - I've been know to beat my fists together for that reason. Also, I know that some ways of stimming (e.g. staring passively at a light or a spinning object) may not involve ‘stereotypies’. I think people are trying to treat a diverse category of behaviors (i.e., ‘stereotypies’) as a single monolithic entity, and thus failing to see differences in motivation or purpose. By assuming simplistic models, when one exception is found, then they all seem to jump on the new bandwagon - and talk as if their (external) views were absolute (when they’re not - and are often INCOMPLETE or otherwise WRONG)!"

Temple Grandin speaks of the refuge of stereotypy:

" Intensely preoccupied with the movement of the spinning coin or lid, I saw nothing or heard nothing. People around me were transparent. And no sound intruded on my fixation. It was as if I were deaf. Even a sudden loud noise didn't startle me from my world. But when I was in the world of people, I was extremely sensitive to noises" (Grandin & Scariano, 1986, p. 23).

Others speak of the essentially private nature of stereotypy:

"If I'm not monitoring them, because I'm worn out, distracted overwhelmed, intensely focused on something else, or just relaxed and off-guard then stereotyped movements will occur....People who are close enough for me to be relaxed and off-guard with can expect to see me acting 'weird', while people who only see me in my 'public display' mode don't see such behaviour" (Caesaroni & Garber, 1991).

Jared Blackburn conveys the complexity of the issue well when he states that:

"Stimming may occur for a variety of reasons, different for each individual and at different times. Some stimming may be done in times of high arousal, while other types may appear primarily in situations of low arousal. Stimming may act as a way of compensating with sensory issues, as a form of entertainment, as an absent-minded habit, and perhaps for other reasons I'm not thinking of right now. (Some stereotypies - and a great deal of self-injurious behavior - may also be non-stimulatory purpose as well, such as out of frustration, as a form of "displaced aggression" toward one's self)."

It seems to me that if there is a single message to be drawn from the literature, it is that self-injury and stereotypic behaviour can be related to an individual’s past history, their current thoughts, feelings, and perceptions, the action of various neurotransmitters and the reinforcing properties of the environment in which they find themselves.

Doug is certainly correct to emphasise the subjective feelings of the individual who displays such behaviour. In addition researchers such as Sinason (1986) have alerted us to the importance of emotional and psychological factors nested in families and relationships. Neurobiologists such as Baumeister have shown that we cannot ignore events at the physiological level and a host of behavioural researchers have pointed out the importance of the environment in shaping and developing stereotyped responses (Jones, Walsh & Sturmey, 1995).

In considering Aldred’s question the true answer is that we simply don’t know enough to have anything but the beginning of an understanding of what causes these behaviours and the level of humility which ought to accompany such ignorance has perhaps been traditionally absent from our academic debates on the subject.

Maurice Feldman. At this point, we do not have a firm answer to the cause(s) of stereotypic (ST) and self-injurious behaviour (SIB). It is likely that there are multiple causes, and complex interactional processes between biological, personal, and environmental variables that ultimately lead to these behaviours. From a biological perspective, certain conditions are known to be associated with increased risk of these behaviours (these conditions also tend to be associated with other developmental and medical problems). Some of the more common developmental disorders related to ST and SIB include: autism, PDD, Fragile X syndrome, Prader-Willi syndrome, Rett syndrome, Lesch-Nyhan syndrome, Congenital Rubella, and Fetal Alcohol syndrome (to name but a few). At this point, the mechanisms and pathways by which these syndromes ultimately lead to ST and SIB remain unclear. The best we can say is that having one of these conditions predisposes a person to also exhibit ST and/or SIB, under certain conditions.

In addition to potential biological factors, certainly a person's past and current experiences play an important role, and likely interact with predisposing biological conditions. We need to study much more closely the genesis of these behaviours in young children with developmental disabilities. Do these behaviour emerge full blown at certain developmental periods (as has been suggested about many children with autism and may be indicative of a biological "time-bomb") or do they gradually increase in frequency and intensity (suggesting a learning/ experiential model)? We also do not know what combination of experiences and environments place a child more at risk to develop and maintain ST and SIB. There certainly are candidates such as a history of abuse; deprived, disorganized, and unpleasant environments; lack of opportunities to learn appropriate communication, social, and other adaptive skills; physical illness; caregiver and individual stress and isolation; lack of social supports; caregiver depression and mental illness; caregiver coping styles; attachment problems, and caregiver-person interactions.

Teasing apart cause-and-effect relationships requires long-term longitudinal studies. However, the many successful intervention studies based on a behavioural support model certainly suggest that a learning

component is involved. Despite biological predispositions, changing the environment to make it more supportive for learning alternative behaviours (e.g., communication, play, social skills) and coping strateiges can significantly reduced ST, SIB, and other challenging behaviours.

Evidence needs to be gathered from multiple sources to fully understand the nature and cause(s) of ST and SIB. Both quantitative and qualitative studies are needed. Certainly, the person's own point of view should be solicited, if at all possible. When a person is non-communicative, then systematic observations of their reactions to their environment could be very informative. Keep in mind, however, that just because one has a particular condition does not necessarily mean that the person can correctly identify the inherent causes of the condition. It is helpful to know that in particular situations a person with autism is reporting feeling anxious and wanting to engage in ST or SIB. This information is important to unlocking some of the mysteries of autism and its relationship to ST and SIB. However, based on this introspective evidence alone, one cannot conclude that anxiety causes the ST and SIB (although it may feel that way to the person). We must also ask what causes the anxiety in the first place - i.e., identify the (likely) complex chain of causal and mediational events that ultimately leads to the behaviours that we are trying to understand.

Interventions

Question 2. When stereotypic or self-abusive behaviour does arise, what do we know about interventions that help reduce and eliminate it over the longer term? How strong is the evidence?

Stuart McDonald. With respect to both stereotypic and self-abusive behavior, interventions that have been most successfully reported in the literature in recent years are those that are based on a comprehensive assessment. Such assessments determine the importance of a variety of variables that may contribute to behaviors exhibited by indivduals. These include medical assessment, neurological assessment, psychological assessment, as well as a functional assessment of enviornmental factors such as social, physical, instructional, and transition factors. Comprehensive assessment results in a functional analysis in which the practioner is able to test hypothesis based on variables identified through the assessment process. This process if done thoroughly will often identify one or more critcal variables that contributes to or controls the behavior of interest.

Such a process provides legitimacy to the individual and the behavior of interest and may or may not lead to successful intervention. Recent literature has been characterized by this approach and there are many examples of unique and individualized humane and moral successful interventions. There are also many examples of cases where researchers have gained an understanding of self-injurious or stereotypic behavior in the sense of identifying the critical or controlling variables but have been unable to successfully treat the behavior because of an inability to control or change the these variables for a variety of reasons. In essence, at this point in time we have a reasonably sufficient technology to assess and analyze self-injurious and stereotypic behavior but much more research is required in the areas of medical interventions, and social and enviornmental change before our technology for change has a lot of cetainty to it. What we have come to appreciate is that every individual is a unique human being and soloutions for their challenging behavior must also be unique.

Robert Jones. By far the most successful treatments for self-injury and stereotypy in the literature come from within the behavioural tradition and Stew is correct to point this out. In particular the philosophy and technology of functional analysis has in recent years revolutionised the field of applied behavioural analysis.

Much has still to be done however. We must not become blind to the limitations of any one approach. Yes, behavioural analysis has been the must successful approach in this area; but, contrary to the assertions of many researchers in the field, the available data is prone to a widespread publication bias towards short-term successful interventions with insufficient evidence to show the universal efficacy of procedures when applied to low-rate, high-intensity behaviours such as the kind of self-injury often seen in out patient psychiatric clinics. The case for long-term maintenance and generalisation of behavioural treatments has yet to be proven, and the existing data on the effects of interventions on non-treated behaviours in its infancy.

There is also a need to expand the kinds of questions we ask in a behavioural analysis. Not only do we need to be aware of the observable causes of behaviour in terms of whether self-injury or stereotyped behaviour is maintained by variables such as attention, escape, self-stimulation or tangible reinforcement, but we need to expand this methodology to include factors which are not easily observed or recorded. Concepts like self-esteem, self efficacy, control, dignity etc. are outside the normal conceptual framework of behavioural analysis and yet may directly influence the presence of these behaviours. Similarly, Maurice makes a very valid point in relation to first hand accounts in pointing out that introspective evidence alone is not a sufficient foundation upon which to build a comprehensive treatment base. Yes, listening to people’s accounts is a very important first step, but all methodologies have limitations and we need to be open minded in our search for successful interventions.

Maurice Feldman. I’m much in agreement with Stew and Robert. While there is certainly considerable work needed in improving and evaluating behavioural interventions, keep in mind that the empirical basis of this approach allows for -- perhaps requires -- an evolutionary pace of technological advancement in a systematic, scientific way. That is happening. Also, there are no alternative candidates out there that come close to having the amount and kinds of objective efficacy evidence as does behaviour analysis. That being said, I agree with Robert that we should always be on the look-out for new approaches and theories. As I said in my previous comment (above), however, it is unfortunate that many people with DD and challenging behaviour have not had the opportunity to have access to the most recent advances in positive behavioural support, which has a firm grounding in applied behaviour analysis.

Directions for Future Research

Question 3. What don't we know in relation to stereotypic or self-abusive behaviour that is worthy of further research?

Maurice Feldman. As mentioned in my response to question 1, longitudinal studies of young children with DD are needed to identify early onset, and risk and protective factors (we currently are conducting such a study). Several investigators have been studying home videos of infants who have subsequently became autistic to see if early (subtle) signs are detectable in infancy. More research is needed on different types of self-injurious behaviours. Some people have very severe, high-frequency, repetitive head-hitting, handmouthing, eyepoking, biting that seem to be independent of context and are very treatment resistant.

Perhaps, the etiology of these behaviours are different from other types of SIB that tend to occur in specific contexts (e.g., demand situations, low stimulation environments) and have a clear function (e.g., escape, attention-seeking, pleasant sensory consequences). Moving away from the individual, more research is needed on how to convince caregivers, service providers, and service funders to implement evidence-based effective interventions (e.g., interventions based on positive behaviour support models).

The treatment technology exists to support individuals to learn more positive ways of interacting to replace their challenging behaviour, but often this technology is not implemented by people in positions to do so (e.g., directors of residential and day programs, family support workers, teachers). Because of systemic issue (e.g., no system to make service providers accountable for achieving and documenting beneficial personal outcomes; insufficient support and education for careproviders), many people with challenging behaviours do not have access to the least restrictive, most effective interventions. There has been considerable research showing the positive effects of supervisor feedback on front-line staff interactions with the individuals they support. But studies of organizational feedback systems to promote positive behaviour support are lacking. More research also is needed on the best ways of supporting families who have members with challenging behaviours. There are many other gaps in knowledge about stereotypic, self-injurious, and other challenging behaviours in people with DD that require more research, but I will end here.

Robert Jones. As has been discussed in relation to question 1, there is still much debate about the nature of self-injurious and stereotypic behaviours. Inevitably this means that theories concerning the causes and treatment of these behaviours abound and much of the research evidence is contradictory. If we take just stereoytpy as an example, there exists at least half a century of scientific study of these repetitive behaviours and an enormous volume of literature has accumulated on the topic. Yes, there is much that we know and while we should be proud of our achievements to date, we should also remember that we still do not know for certain why some people - and not others - develop these complex and persistent behaviours; why they remain in the behavioural repertoires of the people concerned; and which treatments are most effective in reducing them. As in any area of human investigation, theories abound in the absence of clear, unambiguous data.

This has clear implications for future research: We need to continue to quest for knowledge on all fronts. We simply don’t know enough about these behaviours to say that any aspect of our current research endeavours could be abandoned. In short, this question could be turned on its head. Is there any aspect of our current investigations into stereotyped or self-abusive behaviour that is NOT worthy of further research? I think the answer is ‘no.’

References

Baumeister, A. A. (1978). Origins and control of stereotyped movements. In C. E. Meyers (Ed.) Quality of Life in Severely and Profoundly Mentally Retarded People: Research Foundations for Improvement. Washington D. C. : American Association on Mental Deficiency.

Blackburn Jared My Inside View of Autism. Internet Website Address: http://www.planetc.com/users/blackjar/autism.html

Cesaroni, L., & Garber, M. (1991). Exploring the experience of autism through first-hand accounts. Journal of Autism and Developmental Disorders, 21, 303-313.

Jones, R.S.P., Walsh, P., & Sturmey, P. (1995). Stereotyped Movement Disorders. Wiley Series in Clinical Psychology. London: Wiley.

Sinason, V. (1986). Secondary mental handicap and its relationship to trauma. Psychoanalytic Psychotherapy, 2, 131-154.