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Self-injurious Behavior

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Self-injurious behavior (SIB) is common in many children/adolescents with intellectual disability and/or autism spectrum disorder. It is a very complex behavior with both somatic and psychological aspects. It can be mild, such as biting the hand, or it can be devastating, including head banging and eye gouging. It can lead to permanent disability, deafness and blindness, or death. It decreases quality of life for the individual with the SIB, caregivers, and other family members.
The occurrence of SIB is particularly high in some genetic syndromes, including Prader-Willi syndrome and Cornelia de Lange syndrome. Sylvia Huisman defines it as “non-accidental behavior, resulting in demonstrable self-inflicted physical injury, without intent of suicide or sexual arousal. Typically, the behavior is repetitive and persistent.” [Huisman: 2018]

Prevalence

The prevalence of SIB in individuals with intellectual disability in non-residential care settings is about 30%, and it is even more common in residential care settings. [Lowe: 2007] The prevalence is higher in those with both autism spectrum disorder and intellectual disability. [Wilde: 2017]

Assessment/Management

A multi-disciplinary workgroup supported by the Autism Intervention Research Network and Autism Speaks Autism Treatment Network has recommended detailed steps for assessment and management of problem behaviors. [McGuire: 2016] This begins with ruling out physical disorders that may lead to these behaviors, including Gastroesophageal Reflux Disease, Constipation, sleep issues, pain, inflammation/infection, sensory disorders, caries, and others. Psychosocial stressors, such as parental stress and bullying, also should be addressed.
Taking into account both medical and behavioral contributions to SIB, an individual treatment plan should be implemented. In some extreme cases, this may include measures to prevent injury, such as temporary restraints or a protective helmet to prevent sequelae such as blindness from eye gouging or infection from constant skin picking. A treatment plan, once implemented, should be monitored about every 3 months for improvement and any changes needed.
This plan should include looking for and addressing physical factors such as poor sleep and environmental factors such as too much time alone or a chaotic classroom. The co-occurrence of anxiety and ADHD may affect SIB and should be treated.
Functional Behavior Analysis (FBA) is often the most important management tool in the treatment plan. In FBA, behavior specialists analyze problematic behaviors and work to change various contributors to these behaviors.
Finally, psychopharmacological interventions may also be helpful. Risperidone and aripiprazole have shown efficacy in the treatment of irritability and aggression in children with intellectual disability and/or autism spectrum disorders. [McGuire: 2016]

Services

Behavioral Therapies (see NW providers [1])
Behavioral therapy seeks to identify and help change potentially self-destructive or unhealthy behaviors and may be helpful in treating self-injurious behavior that does not respond to identifying and eliminating physical health issues and obvious triggers.
Psychiatry/Medication Management (see NW providers [0])
If self-injurious behavior is not responding to behavioral therapies or there are complicating co-diagnoses such as anxiety or autism, a referral to psychiatry for medication management may be helpful.

Resources

Information & Support

For Professionals

Self-Injurious Behavior in Cornelia de Lange Syndrome (FIND)
Information about behavior problems and a demonstration video of self-injurious behavior in an individual with Cornelia de Lange syndrome from the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham, England.

Services for Patients & Families Nationwide (NW)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Helpful Articles

Mazurek, MO, Kanne, SM, Wodka, EL.
Physical aggression in children and adolescents with autism spectrum disorders.
Research in Autism Spectrum Disorders. 2013;7:455-465.

McGuire K, Fung LK, Hagopian L, Vasa RA, Mahajan R, Bernal P, Silberman AE, Wolfe A, Coury DL, Hardan AY, Veenstra-VanderWeele J, Whitaker AH.
Irritability and Problem Behavior in Autism Spectrum Disorder: A Practice Pathway for Pediatric Primary Care.
Pediatrics. 2016;137 Suppl 2:S136-48. PubMed abstract / Full Text

Allen RP, Picchietti DL, Auerbach M, Cho YW, Connor JR, Earley CJ, Garcia-Borreguero D, Kotagal S, Manconi M, Ondo W, Ulfberg J, Winkelman JW.
Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report.
Sleep Med. 2018;41:27-44. PubMed abstract

Authors & Reviewers

Initial publication: September 2019
Current Authors and Reviewers:
Authors: Lynne M. Kerr, MD, PhD
Sylvia Huisman, MD, PhD
Reviewer: Paul Carbone, MD

Page Bibliography

Huisman S, Mulder P, Kuijk J, Kerstholt M, van Eeghen A, Leenders A, van Balkom I, Oliver C, Piening S, Hennekam R.
Self-injurious behavior.
Neurosci Biobehav Rev. 2018;84:483-491. PubMed abstract

Lowe K, Allen D, Jones E, Brophy S, Moore K, James W.
Challenging behaviours: prevalence and topographies.
J Intellect Disabil Res. 2007;51(Pt 8):625-36. PubMed abstract

McGuire K, Fung LK, Hagopian L, Vasa RA, Mahajan R, Bernal P, Silberman AE, Wolfe A, Coury DL, Hardan AY, Veenstra-VanderWeele J, Whitaker AH.
Irritability and Problem Behavior in Autism Spectrum Disorder: A Practice Pathway for Pediatric Primary Care.
Pediatrics. 2016;137 Suppl 2:S136-48. PubMed abstract / Full Text

Wilde L, Eden K, de Vries P, Moss J, Welham A, Oliver C.
Self-injury and aggression in adults with tuberous sclerosis complex: Frequency, associated person characteristics, and implications for assessment.
Res Dev Disabil. 2017;64:119-130. PubMed abstract