Self-Injury in Autism:
An Excruciating Behavioral Challenge
Abruptly, with seemingly no warning, 6-year old Elizabeth began screaming and hitting her face with her fists, and striking her head on the floor. Her mother’s anguished face said it all: “Oh, no, not again!” Elizabeth’s father knelt on the floor, restraining her to prevent his child from further injuring herself. Elizabeth, who was diagnosed with autism, was minimally verbal and had a rare genetic disorder and intellectual disability, as well as autism. Her parents reported that such episodes occurred daily, and sometimes lasting for an hour or longer. Sometimes her face was covered with blood from the scratches and blows. Her parents' torment was palpable; they had no idea what to do about Elizabeth’s self-injury. Seeing one’s child severely hurting herself and being unable to do anything to prevent it from happening is intolerable. It inflicts emotional pain unlike nearly anything parents experience.
Numerous studies have shown self-injury is among the most troubling behavioral challenges associated with autism for parents, doctors, therapists and school personnel. Behavior directed toward parts of the person’s own body, which because of its location, force or repetition, causes physical harm, is called self-injurious behavior or SIB. SIB in autism is not like self-destructive behavior in schizophrenia or other psychoses, or among adolescents with borderline personality disorder (self-cutting). In psychoses, SIB typically occurs infrequently during a florid psychotic episode, and when it occurs, it may be severe and involve excruciating injury, such as genital cutting. In borderline personality disorder, self-cutting or self-burning may occur daily or every few days, but very seldom causes severe danger to the person, though it can be disfiguring and at times alarming. It is often associated with a history of sexual or physical abuse. Self-injury in autism is not a suicide attempt as was believed many years ago. It is a non-functional, repetitive, sometimes compulsive behavior pattern due to social deficits and underlying biological factors.
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SIB in autism involves striking the face, head or other body parts with hands or against hard surfaces, self-biting, scratching, or poking (e.g. eyes or ears). The most common self-injury is directed toward forehead, sides of the head, bridge of the nose, side of the first finger, the wrist, the junction of the thumb and first finger or back of the hand. Very occasionally SIB involves other body parts such as the ears, mouth, rectum or genitals. About 85% of self-injury in autism occurs on 5% of the body’s surface. It is often very repetitive, appears almost the same from instance to instance, and is not easily re-directed. It is purposeful, not accidental. Self-injury in autism often has a driven-appearance and any attempt to interfere with it causes further emotional outburst. If parents, teachers or caregivers attempt to physically stop the behavior, a tantrum often ensues and aggression and self-injury worsen. Without treatment, in some cases SIB can occur hundreds of times a day causing severe damage and health problems.
Courtesy of Dr. Frank Symons, University of Minnesota,
Project on pain and self-injury in developmental disabilities
Though caregivers often report that a child’s self injury appears to them to occur constantly or for no reason, in fact records indicate nearly all self injury in autism is episodic and occurs under specific circumstances. There may be relatively long periods (hours) with no self-injury then bouts of severe self-harm, followed by another period with no SIB. Self-injury varies from very mild, like rubbing or pinching the skin that may cause bruising, to very serve self-biting through the skin, blood vessels and, severing nerves to fingers or the entire hand, or if directed toward eyes, causing blindness. The frequency and severity of self-injury is inversely related to language skills and intellectual ability, i.e. typically the most damaging self-injury is among individuals with no means of communication and IQs below 50. Lack of mobility is also associated with more serious self-injury. Self-injury among individuals who are blind and/or deaf is often the most difficult to treat. SIB is also much more common among people with autism who also have multiple genetic errors and other disabilities, such as epilepsy, as well as intellectual disability.
Understandably, parents focus their attention on the immediate problem of stopping the self-injury once it has begun. But putting out fires is not the same a preventing them. In reality, the best way to treat self-injury is to prevent it from worsening beginning very early in childhood. The single most important way of preventing self injury among most children with autism involves teaching basic communication skills, which can be spoken, but also often including augmentative and assistive technology approaches such as PECS, gestures/signing or use of simple speech output devices. Secondly, it is important that caregivers give more attention to other types of communicative attempts, and other more appropriate behavior than to self-injury. Third, prevention of SIB involves providing children with a wider range of skills with which to negotiate their day-to-day environment, in order to minimize frustration and to increase stimulating engagement with their surroundings. The goal is NOT for adults to stimulate the child, which tends to make them more passive, but to teach the child to more actively participate in social interactions, games and daily functional activities that are inherently interesting and rewarding to them, which provide some control over their environment. It is important for them to gain skills which place them into contact with other children. Loss of control is central to the cause of self-injury.
There is no evidence various sensory interventions alone, such as sensory integration, sensory diets, or use of sensory rooms have any significant lasting impact on self-injurious behavior in autism. At times some children with autism may find them briefly interesting, but typically soon revert to self-stimulation and self-injury. In some cases, the sensory activities can actually provoke more self-stimulation. Dietary manipulations, vitamin and mineral supplements have not been shown to have any measurable effect on self-injurious behavior. There is currently no evidence that treatments for possible dietary or other allergies have any significant effect on self-injurious behavior in autism. Unless a child has been diagnosed by a qualified gastroenterologist as having Celiac Disease, parents who choose to use a Gluten-Caesein Free Diet with their child, should not expect that it will help reduce self injury . If a qualified gastroenterologist finds on examination that a child with autism has a documentable intestinal disorder, like any other child, that condition should be treated; however there is little evidence that such health problems are specifically related to self-injury, though because of discomfort, they can increase susceptibility.
Thompson Figure 10, Chapter 8. Making Sense of Autism. Paul H. Brookes. Inc.
Among older children who are engaging in significant SIB that has not reached the point of being imminently dangerous (i.e. there is no risk of loss of vision, or causing serious tissue damage), the reasons behind the behavior can often be identified and effective treatments implemented. It is important that physical factors that may be contributing to susceptibility to self injury are ruled out or treated, such as ear aches, constipation, sleep problems, other health problems (e.g. high blood sugar in diabetes) or another source of physical pain (e.g. an infection or injury). Any child with significant self-injury should receive a careful physical health evaluation by a qualified pediatrician.
Using a Functional Behavioral Analysis or Assessment , it is usually possible using a combination of parent and teacher interview and direct observation, to identify the most likely social factors provoking and maintaining self-injury. This process often takes place over about a week, beginning with extensive interview and parents completing a questionnaire about the child and circumstances surrounding SIB. The results are analysed by an experienced behavior analyst or psychologist trained in behavior analysis, who pinpoints situations that provoke self injury and caregiver reactions that sustain the self-injury.
Between half and 3/4ths of self injury is due to a child’s frustration at being unable to have access to something or an activity that s/he expects, or are attempts to escape or avoid a situation. From 1/4th to half are due to desire for attention from a parent or teacher. The child may be escaping from a task they don’t understand, which seems too difficult for them, which involves aspects that are disturbing (e.g. due to the social setting or sounds) or may be frightening. Most often the child engages in SIB when an activity that they had expected to occur or not occur, or suddenly changes. Specific interventions to teach missing skills and ways of tolerating changes in routines can eliminate these problems.
Using a Functional Behavioral Analysis or Assessment , it is usually possible using a combination of parent and teacher interview and direct observation, to identify the most likely social factors provoking and maintaining self-injury. This process often takes place over about a week, beginning with extensive interview and parents completing a questionnaire about the child and circumstances surrounding SIB. The results are analysed by an experienced behavior analyst or psychologist trained in behavior analysis, who pinpoints situations that provoke self injury and caregiver reactions that sustain the self-injury.
Between half and 3/4ths of self injury is due to a child’s frustration at being unable to have access to something or an activity that s/he expects, or are attempts to escape or avoid a situation. From 1/4th to half are due to desire for attention from a parent or teacher. The child may be escaping from a task they don’t understand, which seems too difficult for them, which involves aspects that are disturbing (e.g. due to the social setting or sounds) or may be frightening. Most often the child engages in SIB when an activity that they had expected to occur or not occur, or suddenly changes. Specific interventions to teach missing skills and ways of tolerating changes in routines can eliminate these problems.
Most Frequent Self-Injury Locations, from Symons & Thompson, 1997,
J. Int. Disabilities Research, 41
Many parents are skeptical of the value of psychotropic medications, but they may be helpful with some children with self-injury. As children grow older, and among children with multiple disorders, behavioral interventions may be insufficient alone to reduce or eliminate SIB. Several categories of medication are prescribed by physicians under these circumstances. For milder outbursts, several blood pressure medications that reduce the amount of autonomic “overflow” associated with an anger or anxiety outburst are used, such as Tenormin® (atenolol) or Catapres® (clonidine). For children with autism who experience a great deal of anxiety and have more extreme compulsive routines, the SSRIs antidepressants (selective serotonin reuptake inhibitors) such Prozac® (fluoxetine) or Paxil® (paroxetine) are often prescribed. They are especially effective for children with compulsive rituals. For children with persistent more extreme outbursts with greater risk of physical harm, especially those with a history of seizures, mood stabilizer medications which are also used for epilepsy are sometimes prescribed, such as Tegretol® (carbamazepine) or Lamictal® (lamotrigine). Individuals with a family history of Major Depression or Bipolar Disorder are more likely to be responsive to these medications. For older children with more severe SIB that has not been responsive to other treatments, atypical antipsychotic medications such as Risperdal® (respieridone) or Abilify® (aripriprazole) are prescribed. Between 1/3 and ? of individuals with severe and unremitting SIB are selectively responsive to medication that blocks the brain’s opiate receptors, such as ReVia® (naltrexone). Several studies have shown in clinical trials that naltrexone can be very helpful in reducing SIB among 1/3-1/2 of individuals with high frequency SIB at the body sites indicated above, which are all acupuncture analgesia sites.
Medications are not like a magic wand, and will not solve the problem of SIB alone, but appropriately used can be very helpful. They can be important in making the symptoms manageable while implementing appropriate behavioral interventions. It is generally not recommended that children with ASDs receive multiple psychotropic medications unless they have multiple disorders (e.g. epilepsy as well as autism). All medications can cause adverse side effects, but much of the time side effects can be minimized by carefully selecting type of medication, the lowest effective dose and avoiding drug interactions. If your child’s doctor recommends such medication, it is important you understand possible side effects so you know what to watch for. In addition, you should maintain on going record of your child’s self-injury so you can evaluate whether the medication is helping. Since SIB is very episodic, it is important to remember that what happens on any single day (for better or worse) is usually not very helpful in deciding whether the medicine is helping in the longer term. The Repetitive Behavior Scales-R (Bodfish et.al. 2000) is perhaps the most widely used measure, although the Self-Injury Trauma Scale (Iwata, et.al. 1990) is also used for individuals with more severe self-injury. Bear in mind, that some children with autism may also have other major mental health disorders, such as bipolar disorder or major depressive disorder, and withholding effective medication treatment is contrary to the best interest of such children.
Research on self-injury suggests an interaction of brain chemical factors which have genetic origins and social factors are involved in the most intransigent cases of self-injury. Efforts to identify physical indicators of underlying brain developmental differences, such as measurable facial features, and more complex behavioral assessments are underway in an effort to unlock this puzzle. A multi-site project directed by Drs. Michael Cataldo, Iser de Leon and Lisa Toole at the Kennedy Krieger Institute in collaboration with Drs. William McIlvane and Bill Dube at the Eunice Kennedy Shriver Institute and Drs. Dean Williams and Kate Saunders at the University of Kansas is specifically addressing these issues.
Most parents and teachers of children with self-injury need professional assistance in addressing the needs of children with autism and self-injury. Often, less severe self-injury can be managed and reduced with assistance from behavior analysts and psychologists experienced in Functional Behavioral Assessment, working in collaboration with pediatricians. The most severe and unremitting self-injury may require treatment by specialists who are usually based in medical centers with specific expertise in this area. Among the professionals in the US that specialize in the diagnosis, assessment and treatment of self injury in autism are the following:
Edwin Cook, MD, Professor, University of Illinois at Chicago, Department of Psychiatry (M/C 747) Institute for Juvenile Research 1747 W. Roosevelt Road, Rm. 155 Chicago, IL 60608.
Wayne Fisher, Ph.D., LP, BCBA-D?Director, Center for Autism Spectrum Disorders H.B. Munroe Professor of Behavioral Research Munroe-Meyer Institute, University of Nebraska Medical Center?Omaha.
Bryan King, MD, Professor, Dept of Psychiatry and Behavioral Sciences, University of Washington, Seattle.
Louis Hagopian, PhD, BCBA, Clinical Director, Neurobehavioral Unit, Kennedy Krieger Institute, Baltimore, MD.
Rebecca P.F. MacDonald, Ph.D., BCBA, Program Director - Intensive Instruction Program, New England Center for Children, Southborough, Massachusetts. http://www.necc.org/
Henry Roane, PhD, LP, BCBA, Depts of Psychiatry and Pediatrics, 124 600 E. Genesee Street, 600 E. Genesee Street, Syracuse, NY. [email protected]
Conclusions and Recommendations:
1. Self-injury is perhaps the most complex and difficult behavioral challenge exhibited by individuals with autism. It is not only physically damaging, it is stigmatizing and prevents meaningful social integration, and is a source of anguish to parents.
2. Self-injury in autism usually arises early in life and grows progressively worse if untreated. Rarely, if ever, does a child “outgrow” self-injurious behavior.
3. It is a mistake to depend on a management strategy based on finding ways to distract or stop the self-injury once it an episode has begun. That is almost never effective in the long run and risks actually making the condition worse.
4. The most effective treatments are preventative, i.e. to avoid worsening of SIB by teaching communication and other skills.
5. In the majority of cases, a Functional Assessment-Based Treatment can reduce or eliminate self-injurious behavior among individuals with autism.
6. In some of the more complex, unremitting self-injury, several medications have been shown to reduce self injury among some people with autism. Among the most effective medications is naltrexone, an opiate receptor blocker.
7. Self-injury is excruciating for the affected individual as well as their family. Parents are seldom able to manage severe self-injury on their own, and require specialized help. Seeking assistance from qualified behavior analysts or psychologists trained in behavior analysis in collaboration with an experienced pediatrician or child psychiatrist is a good first step. If additional assistance is required there are several national centers in the US that specialize in treating self-injurious behavior in autism.
Bibliography
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.
Iwata, B.A. et.al. (1990) The Self-Injury Trauma (SIT) Scale: a method for quantifying surface tissue damage caused by self-injurious behavior J Appl Behav Anal. 23(1): 99–110.
Sandman, C., Hetrick, W., & Thompson, T., (1998). Opiate blockers. In S. Reiss, and M. G. Aman (Eds.), Psychotropic medications and developmental disabilities. The International Consensus Handbook (pp. 291-302). Columbus, OH: The OSU Nisonger Center.
Rojahn, J, Schroeder, SR and Hoch, TA (2007) Self-Injurious Behavior in Intellectual Disabilities, Volume 2 (The Assessment and Treatment of Child Psychopathology and Developmental Disabilities) Elsevier Science; 1 edition
Schroeder, SR, Oster-Granite, ML and Thompson, T (2002) Self-Injurious Behavior: Gene-Brain-Behavior Relationships American Psychological Association
Symons, F.J., and Thompson, T. (1997). Self-injurious behavior and body site preference. Journal of Intellectual Disability Research, (41) 6, 456-468
Symons, F. J., Fox, N. D., Thompson, T. (1998). Functional communication training and naltrexone treatment of self-injurious behavior: an experimental case report. Journal of Applied Research and Intellectual Disabilities (11) 3, pp. 273-292
Taheri, A and Perry, A. J. Exploring the Proposed DSM-5 Criteria in a Clinical Sample. J. Autism Dev Disorder. 2012 July 18 Epub ahead of print.
Medications are not like a magic wand, and will not solve the problem of SIB alone, but appropriately used can be very helpful. They can be important in making the symptoms manageable while implementing appropriate behavioral interventions. It is generally not recommended that children with ASDs receive multiple psychotropic medications unless they have multiple disorders (e.g. epilepsy as well as autism). All medications can cause adverse side effects, but much of the time side effects can be minimized by carefully selecting type of medication, the lowest effective dose and avoiding drug interactions. If your child’s doctor recommends such medication, it is important you understand possible side effects so you know what to watch for. In addition, you should maintain on going record of your child’s self-injury so you can evaluate whether the medication is helping. Since SIB is very episodic, it is important to remember that what happens on any single day (for better or worse) is usually not very helpful in deciding whether the medicine is helping in the longer term. The Repetitive Behavior Scales-R (Bodfish et.al. 2000) is perhaps the most widely used measure, although the Self-Injury Trauma Scale (Iwata, et.al. 1990) is also used for individuals with more severe self-injury. Bear in mind, that some children with autism may also have other major mental health disorders, such as bipolar disorder or major depressive disorder, and withholding effective medication treatment is contrary to the best interest of such children.
Research on self-injury suggests an interaction of brain chemical factors which have genetic origins and social factors are involved in the most intransigent cases of self-injury. Efforts to identify physical indicators of underlying brain developmental differences, such as measurable facial features, and more complex behavioral assessments are underway in an effort to unlock this puzzle. A multi-site project directed by Drs. Michael Cataldo, Iser de Leon and Lisa Toole at the Kennedy Krieger Institute in collaboration with Drs. William McIlvane and Bill Dube at the Eunice Kennedy Shriver Institute and Drs. Dean Williams and Kate Saunders at the University of Kansas is specifically addressing these issues.
Most parents and teachers of children with self-injury need professional assistance in addressing the needs of children with autism and self-injury. Often, less severe self-injury can be managed and reduced with assistance from behavior analysts and psychologists experienced in Functional Behavioral Assessment, working in collaboration with pediatricians. The most severe and unremitting self-injury may require treatment by specialists who are usually based in medical centers with specific expertise in this area. Among the professionals in the US that specialize in the diagnosis, assessment and treatment of self injury in autism are the following:
Edwin Cook, MD, Professor, University of Illinois at Chicago, Department of Psychiatry (M/C 747) Institute for Juvenile Research 1747 W. Roosevelt Road, Rm. 155 Chicago, IL 60608.
Wayne Fisher, Ph.D., LP, BCBA-D?Director, Center for Autism Spectrum Disorders H.B. Munroe Professor of Behavioral Research Munroe-Meyer Institute, University of Nebraska Medical Center?Omaha.
Bryan King, MD, Professor, Dept of Psychiatry and Behavioral Sciences, University of Washington, Seattle.
Louis Hagopian, PhD, BCBA, Clinical Director, Neurobehavioral Unit, Kennedy Krieger Institute, Baltimore, MD.
Rebecca P.F. MacDonald, Ph.D., BCBA, Program Director - Intensive Instruction Program, New England Center for Children, Southborough, Massachusetts. http://www.necc.org/
Henry Roane, PhD, LP, BCBA, Depts of Psychiatry and Pediatrics, 124 600 E. Genesee Street, 600 E. Genesee Street, Syracuse, NY. [email protected]
Conclusions and Recommendations:
1. Self-injury is perhaps the most complex and difficult behavioral challenge exhibited by individuals with autism. It is not only physically damaging, it is stigmatizing and prevents meaningful social integration, and is a source of anguish to parents.
2. Self-injury in autism usually arises early in life and grows progressively worse if untreated. Rarely, if ever, does a child “outgrow” self-injurious behavior.
3. It is a mistake to depend on a management strategy based on finding ways to distract or stop the self-injury once it an episode has begun. That is almost never effective in the long run and risks actually making the condition worse.
4. The most effective treatments are preventative, i.e. to avoid worsening of SIB by teaching communication and other skills.
5. In the majority of cases, a Functional Assessment-Based Treatment can reduce or eliminate self-injurious behavior among individuals with autism.
6. In some of the more complex, unremitting self-injury, several medications have been shown to reduce self injury among some people with autism. Among the most effective medications is naltrexone, an opiate receptor blocker.
7. Self-injury is excruciating for the affected individual as well as their family. Parents are seldom able to manage severe self-injury on their own, and require specialized help. Seeking assistance from qualified behavior analysts or psychologists trained in behavior analysis in collaboration with an experienced pediatrician or child psychiatrist is a good first step. If additional assistance is required there are several national centers in the US that specialize in treating self-injurious behavior in autism.
Bibliography
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.
Iwata, B.A. et.al. (1990) The Self-Injury Trauma (SIT) Scale: a method for quantifying surface tissue damage caused by self-injurious behavior J Appl Behav Anal. 23(1): 99–110.
Sandman, C., Hetrick, W., & Thompson, T., (1998). Opiate blockers. In S. Reiss, and M. G. Aman (Eds.), Psychotropic medications and developmental disabilities. The International Consensus Handbook (pp. 291-302). Columbus, OH: The OSU Nisonger Center.
Rojahn, J, Schroeder, SR and Hoch, TA (2007) Self-Injurious Behavior in Intellectual Disabilities, Volume 2 (The Assessment and Treatment of Child Psychopathology and Developmental Disabilities) Elsevier Science; 1 edition
Schroeder, SR, Oster-Granite, ML and Thompson, T (2002) Self-Injurious Behavior: Gene-Brain-Behavior Relationships American Psychological Association
Symons, F.J., and Thompson, T. (1997). Self-injurious behavior and body site preference. Journal of Intellectual Disability Research, (41) 6, 456-468
Symons, F. J., Fox, N. D., Thompson, T. (1998). Functional communication training and naltrexone treatment of self-injurious behavior: an experimental case report. Journal of Applied Research and Intellectual Disabilities (11) 3, pp. 273-292
Taheri, A and Perry, A. J. Exploring the Proposed DSM-5 Criteria in a Clinical Sample. J. Autism Dev Disorder. 2012 July 18 Epub ahead of print.