Predicting the persistence of severe self-injurious behavior
Introduction
Between two and five percent of people with mental retardation who are in receipt of services show repetitive self-injurious behaviors of such a severity that they present a major management challenge Borthwick-Duffy 1994, Emerson et al 1997a. Increased prevalence rates for self-injury has been shown to be associated with a range of personal and environmental factors including severity of mental retardation, autism, some specific syndromes, age, restrictiveness of environment and impairments in mobility, sensory functioning and communication Emerson 1992, Johnson and Day 1992.
The most common forms of self-injury shown by people with mental retardation include: repeated self-biting, punching or slapping; head hitting against the floor, walls or furniture; self-scratching or skin picking; hitting other parts of the body; and placing inedible objects in the mouth Emerson et al 1997a, Oliver et al 1987, Rojahn 1986. Multiple topographies of self-injurious behavior are shown by the majority of people who self-injure Oliver et al 1987, Rojahn 1986. In addition, approximately 50% of individuals with self-injurious behavior also exhibit other forms of challenging behaviors including aggression and destructiveness (Emerson et al., 1997a).
The physical consequences of self-injury can include secondary infections, physical malformation of the face or limbs, loss of sight or hearing, additional neurological damage and even death Borthwick-Duffy 1994, Nissen and Haveman 1997. The social consequences of self-injury are no less troublesome, including social exclusion, institutionalization, neglect and abuse Emerson 1992, Emerson in press.
Surprisingly little is known about the natural history of self-injurious behavior. The scant information which is available suggests that self-injury often emerges in early childhood Guess and Carr 1991, Murphy et al 1999 and can prove remarkably persistent over time Emerson et al 1996, Kiernan and Alborz 1996, Murphy et al 1993, Schroeder et al 1978, Windahl 1988.
Schroeder et al. (1978), for example, reported that 54 of 101 people with self-injury in a large institutional setting showed no change or deterioration in their self-injury over a three year period. More dramatically, Windahl (1988) reported that, of people identified in a Swedish special hospital in 1975 as showing self-injurious behavior, 87% of people who remained in the institution and 97% of people who had been relocated to community-based provision were still showing self-injurious behavior 10 years later. Similarly, Murphy et al. (1993) reported that 52 out of 54 people who showed severe self-injurious behavior were still injuring themselves at a similar level two years later. Kiernan and Alborz (1996) reported persistence rates for severe self-injurious behavior of 75% over a five year period for a cohort of 34 young adults with mental retardation living with their families. Finally, Emerson, Robertson, Letchford, Fowler & Jones (1996) reported persistence rates for severe self-injurious behavior of 72% over a mean eight and a half year follow-up of a cohort of 55 children who attended a behaviorally oriented residential special school.
While there is ample evidence that behavioral interventions may bring about significant reductions in self-injurious behavior over the short to medium term (cf., Carr et al 1999, Emerson in press, Luiselli et al 1992), evidence from long-term follow up studies indicates that such gains rarely involve the elimination of self-injurious behavior and may be difficult to sustain. Schroeder and MacLean (1987), for example, report that only 4% of individuals receiving treatment in a specialized facility (Schroeder et al., 1982) remained free from self-injurious behavior after two or more years of discharge. Indeed, it is notable that even in celebrated cases of long-term successes, the individuals concerned were reported to continue to exhibit low-level self-injurious behavior, at least on a periodic basis (e.g., Foxx 1990, Jensen and Heidorn 1993).
The present study extends this literature by reporting the results of a seven year follow up of a total population sample of people with mental retardation and severe self-injurious behavior. The data presented in this paper form a subset of the results of a larger study investigating the persistence and prevalence of challenging behavior and supports provided to people with mental retardation who show challenging behavior Emerson et al 1997a, Emerson et al 1997b, Emerson et al 1999, Kiernan et al 1997a, Kiernan et al 1997b.
Section snippets
Sample
A total population study of the prevalence of challenging behavior in seven areas of northern England was undertaken in 1988 Kiernan and Qureshi 1993, Kiernan et al 1995, Kiernan et al 1997a, Qureshi and Alborz 1992. The participants identified in the 1988 study included 127 people whose self-injurious behavior was rated by key informants as causing a serious management problem or would have done were it not for the use of specific preventative measures (e.g., use of mechanical restraints,
Results
The cohort of 95 people included 58 men and 37 women. Mean age of the group was 34.7 years at follow-up (range 12–65 years). In 1988, 29 of the cohort were living in family homes, 38 in institutional settings and 28 in community-based residences. At follow-up, 19 were living in family homes, 19 in institutional settings and 55 in community-based residences. Nine were reported to have a diagnosis of autism.
Discussion
Consistent with previous research, relatively high persistence rates for self-injurious behavior were found. Less than one third of people who were identified in a total population sample in 1988 as showing serious/controlled self-injurious behavior were considered seven years later to either no longer show self-injury or to show self-injury at a level which no longer presented a management problem.
While it is, of course, likely that other (unmeasured) variables may be related to the long-term
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