What is Self-Injurious Behavior?
Many children and adults with and without disabilities engage in what is called self-injurious behavior (SIB). These actions result in physical injury that may be as mild as chewing a cuticle or picking a blemish until it bleeds or as severe as head banging that results in possible brain injury, blindness, broken bones and even death. Skin picking (excoriation), pulling out hair (Trichotillomania) and nail biting (onychophagia) are types of SIBs called body focused repetitive behaviors (BFRB) that affects about 1.4% of adults in the United States.
Although I had my own challenges with nail biting and hair twirling, my first experience learning about highly destructive SIB amongst Intellectually and developmentally disabled (IDD) individuals was in 1976. I had never heard of SIB, nor the field of occupational therapy. A newly minted college graduate with a degree in English and no idea what to do with it, I stumbled into a job at a small residential institution for adults with developmental disabilities. I had no training and was told to keep 30, mostly nonverbal individuals busy at their tables. One young man repeatedly inserted his hand down his throat until he vomited. He understood behavior modification better than I did, because he received the attention that he craved.
The 1970s proved to be period of growing disability rights including lawsuits and awareness of the abusive conditions in institutions. A plethora of policies to educate, train, treat, and desinstitutionalize people with developmental disabilities followed. Over the next several decades I learned about the relationship of SIB to neurological conditions such as sensory processing and autism spectrum disorder (SPD), behavioral challenges and the role of occupational therapy in treatment.
Diagnosing Self-Injurious behaviors (SIB)
The term self-harm is used to describe behaviors that are physically and/or mentally harmful- such as drug abuse and cutting one's body. According to the National Alliance of Mental Illness (NAMI), self-harm is a behavior that indicates a need for better coping skills. Several illnesses are associated with it, including borderline personality disorder, depression, eating disorders, anxiety or posttraumatic distress disorder.
Non-suicidal self-injury is recognized as its own separate diagnosis in The Diagnostic and Statistical Manual of Mental Disorders (DSM), 5th edition (2013). It is associated with a variety of psychiatric diagnoses and behavioral concerns. According to doctors, Nock, M. K., & Favazza, A. R. (2009),
NSSI is the direct, deliberate destruction of one's own body tissue in the absence of suicidal intent. NSSI is direct in that the ultimate outcome of the self-injury occurs without intervening steps.
The diagnostic criteria for NSSI provides details including
- frequency
- emotional expectations
- problematic thoughts prior to the behavior
- that the actions are not socially sanctioned
- that it does not occur only in the context of psychosis, delirium or substance use/withdrawal and
- that it is not better accounted for by another psychiatric disorder or medical condition.
Behaviors that are associated with sexual arousal and committed with conscious suicidal intent are excluded from the NSSI diagnosis (Rao, Sudarshan and Begum).
Who Assesses and Treats Individuals with Self-Injurious Behaviors?
Treating SIB may involve a psychiatrist prescribing medication, counseling or a behavior analysist's assessment and treatment protocol. A physician should rule out medical causes such as using SIB as a way to mask another source of pain. Therapies might include
- speech and language therapy to develop a communication program to minimize frustrations.
- occupational therapy to assess for specialized medical devices such as elbow or hand splints that prevent the hand from reaching one's mouth or design a sensory diet.
- massage or other bodywork practitioner who helps to reduce tension.
- counselling by a social worker or other mental health professional to provide cognitive therapy.
Ryan, shown in the photo above typically has his hands in his mouth, causing skin breakdown and infection. He does not use his hands functionally except to grasp a cup or utensil placed in his hand. I positioned weighted and/or vibrating cushions around his shoulders and on top of his arms to discourage this behavior. This was not a restraint because Ryan could remove the objects anytime he chose. He appeared to like the sensory input from weighted materials and vibration. I wrote a treatment goal to increase the amount of time Ryan tolerated the sensory objects as demonstrated by keeping his hands under them.
Diagnoses associated with Self-Injurious Behaviors
You can see the red and swollen knuckles resulting from my client- Joe, (shown in the above photo) biting and sucking on his hands. He is nonverbal, blind, wheelchair dependent and has not developed hand skills other than briefly grasping objects placed in his hands. Due to concerns with increased agitation, Joe is not prevented from putting his hands in his mouth. However, nursing staff recommended frequent cleaning and lotion. Joe appeared to enjoy the heavy pressure sensory input of weighted materials placed on top of his arms and vibration. However, when he lifted his arms the materials were tossed to the floor. I adapted the activity by
-
- placing a cuddly cat bed on his lap
- the socks filled with sand and vibrating toothbrush are attached to the fabric.
- A bag of sand is also sewn to the bottom to provide weight on his lap.
I wrote a goal to increase the amount of time Joe spends engaged in sensory activities when given assistance to access materials. He also loved the sensation of his hands in a basin filled with water and this option was included in the strategies.
Many of my clients with IDD also presented with comorbidities such as
- Psychiatric illness such as borderline personality disorder, depression, eating disorders, anxiety or posttraumatic distress disorder.
- OCD/anxiety- which sometimes is not diagnosed because of the person's other challenges and poor communication skills.
- Attention Deficity Hyperactivity Disorder-(ADHD) symptoms are associated with an increased risk of NSSI in adolescents, especially in the case of girls.
- Genetic Disorders such as Lesch-Nyhan and Rett Syndromes.
- Autism Spectrum Disorders (ASD) SIB has been reported in more than 30 % of children with an autism spectrum disorder (ASD) in clinic-based studies.
Interesting Demographics
Pedro, shown sitting on the mat, enjoys deep pressure from bags filled with sand on his lap, sitting on a vibrating cushion, a weighted collar and very tight hugs. He frequently hits his head and wears a protective helmet. I wrote a goal to engage in the sensory activity of picking up a heavy bag from the floor and placing it in a box on the table. Moving up and down to move weighted objects also provides vestibular input. This goal addresses both Pedro's sensory and functional hand skills.
- Studies indicate that more than 30% of children on the autism spectrum in clinic-based studies have been reported to demonstrate SIB.
- The most common forms of SIB reported in the literature amongst individuals with IDD include head banging, head hitting, and self-biting; these are reported in approximately 40% of all cases.
- Findings reveal that females with NSSI reported higher rates of cutting and scratching and more injuries to arms and legs than their male counterparts
- Males with NSSI reported more burning and hitting-type behavior, as well as injuries to the chest, face, or genitals.
Treatments for Self-Injurious Behaviors
The severity of the behavior is a factor in determining whether protective devices are deemed necessary. Restrictive medical devices such as helmets or splints should be approved by a human rights committee and regularly monitored by a therapist to deem them safe and beneficial. Treating SIB is a team effort that should include medical, behavioral professionals as well as therapists. The following suggestions may be helpful.
Prevent Materials from Reaching the Mouth
Some individuals crave oral sensory stimulation- using their hands or objects. Obviously, they require close supervision and small objects that they can choke on should not be within their reach. The woman shown in the following video, puts everything in her mouth. But she is also happy manipulating objects attached to the table or tray.
Provide Sensory-Rich Hand Activities
Alex, shown in the above photo is blind, nonverbal and rips his clothing every day. He also bites his hands when bored. It is virtually impossible to keep him occupied all the time to prevent SIB. However, I designed a variety of sensory-rich activities that he enjoys. Alex likes to feel and manipulate
-
- textures
- weighted objects
- resistive materials such as pushing socks through a small container opening (shown in the photo aove) and
- vibration.
Alex also enjoys cognitive challenges such as the one shown in the video below. He unscrews the covers and inserts them into the corresponding shape hole in the container on the floor. It requires force to unscrew the covers and push them into the holes. Alex loves activities that are resistive in this way and notice that I made all the materials to be large enough to avoid choking risks.
Self-Care
I believe that in this day and age, especially during a pandemic, there is much more awareness of anxiety disorders, SIB and the need to provide self-care to have the best quality of life. Many of you, like myself not only have to cope with anxiety and sensory challenges but the additional stress of parenting children with disabilities. Here is how I individualize my own sensory diet.
- I sleep with a weighted blanket
- I wear a heated, aromatic, weighted collar as desired
- I lay on an accupressure mat and squeeze or rub my hands on top of a spikey cushion, hairbrush and/or sensory balls
- I play ocean white noise while sleeping
- I get a LOT of exercise
- I have a variety of fidget objects and I alternate or change them up to meet my sensory needs.
- I limit sugar and caffeine
- Marijuana is legal in my state. I find that it reduces anxiety and is fun. Im just an old hippy!
- As I get older, I care less about what people think about me. Its very freeing and it helps that I retired when Covid hit....
There are a variety of support groups on Facebook. You can choose them according to your particular needs. The members seem to be predominently female and often share tips about cosmetics and skin treatments that can be beneficial for people who have scars.
Lastly, you or someone you care about may benefit from occupational therapy services that specialize in skin picking or other body focused repetitive behaviors. According to occupational therapist, Tasneem Abrahams-
"Whilst there is no known definitive cause for compulsive skin picking disorder, evidence shows there is a link with sensory processing disorder as one possible catalyst or trigger. There are many occupational therapist who specialize in sensory processing disorders, and can help people with skin picking disorders understand and select appropriate treatment methods that addresses any underlying sesory issues that might be triggering the urge to pick. In addition, the core philosophy of OT is that engaging in meaningful occupation can be healing and thus lead to wellness."
The following Amazon products may be helpful and I may earn a small fee when you shop through these links.
References
ncbi.nlm.nih.gov/pmc/articles/PMC5505727/
ncbi.nlm.nih.gov/pmc/articles/PMC2755147/
kennedykrieger.org/patient-care/conditions/behavioral-disorders-self-injurious-behavior
mayoclinic.org/diseases-conditions/self-injury/diagnosis-treatment/drc-20350956
pubs.asha.org/doi/10.1044/aac10.1.3
carautismroadmap.org/self-injurious-behavior/
ncbi.nlm.nih.gov/pmc/articles/PMC2993516/
medicalnewstoday.com/articles/325925
mayoclinic.org/diseases-conditions/trichotillomania/symptoms-causes/syc-20355188
mhanational.org/conditions/excoriation-disorder-skin-picking-or-dermatillomania
mdpi.com/2076-3425/9/7/153?fbclid=IwAR2dJ_AbwIXeD2AVNOFczyo9ioTG5DmEgQU_jV3daEvJqiwr94JoU055RxU
webmd.com/a-to-z-guides/stop-nail-biting-tips
nami.org/About-Mental-Illness/Common-with-Mental-Illness/Self-harm
https://2019.recyclingot.com/social-justice-and-occupational-therapy/#.YEeQMWhKjIU
rarediseases.info.nih.gov/diseases/7226/lesch-nyhan-syndrome
ncbi.nlm.nih.gov/pmc/articles/PMC5392775/
ncbi.nlm.nih.gov/pmc/articles/PMC5392775/
Kahng SW, Iwata BA, Lewin AB (2002) Behavioral treatment of self-injury, 1964 to 2000. Am J Ment Retard 107: 212-221.
skinpick.com/online-therapy-programhttps://pu