1. Melissa Hendriks, MD Tisa Johnson, MD Jason Majchrzak MS, LLP, BCBA
Do No Harm: How to assess and treat self-injurious behavior in autism spectrum disorder
Melissa Hendriks, MD
Tisa Johnson, MD
Jason Majchrzak MS, LLP, BCBA

2. Outline Definition Interventions Prevalence and Predictors Behavioral
Case presentation
Medical
Assessment
Summary

3. Self-Injurious Behavior (SIB)
Challenging problem facing individuals with ASD and ID
Serious behaviors inflicted on self with potential for physical harm
Head banging
Self-punching
Self-biting
Skin picking
Self-scratching
Hair pulling

4. SIB Interactions between Stereotypic SIB Biologically based variables
Compulsive nature
Environmental learning histories
Overlap with stereotypies, tics, compulsions
SIB is repetitive in nature

5. Overlap of Repetitive Behaviors
Compulsions
Stereotypy
Tics
SIB
Muehlmann et al. 2012

6. Negative Outcomes Acute or permanent physical injury
Psychiatric hospitalization
Residential care
Medical care
Restrictive treatment practices
Restricted educational and vocational opportunities
Caregiver stress and depression
Increased social isolation

7. Prevalence 4% to 12% in individuals with intellectual disability
Genetic syndromes
Autism spectrum disorder (ASD)
Idiopathic intellectual disability
33% to 71% in autism spectrum disorder
Categorized as severe in 15% of cases
Variability due to differing definitions of SIB and ASD

8. Predictors Level of intellectual disability Impulsivity
Communication deficits
Hyperactivity
Autism and severity of autism symptoms
Impulsive speech
Lower levels of intellectual functioning
Presence of specific genetic disorders
McClintock et al (2003)
Level of intellectual disability
Communication deficits
Autism and severity of autism symptoms
Presence of specific genetic disorders (Fragile X, PWS)
Findings replicated in regard to ID and ASD severity as predictors of SIB
Richards et al (2012)
Impulsivity
Hyperactivity
Impulsive speech
Lower levels of intellectual functioning

9. Self Injurious Behavior
Predictors
Impulsivity
0.46
ADOS
Stereotypy
0.23
Self Injurious Behavior
Affect
0.16 IQ
Richman et al (2013)
Impulsivity
Stereotypy
Severity of impulsivity and hyperactivity independently predicted severity of SIB
Hyperactivity was not a significant predictor
Hyperactivity
-0.19
Richman et al. 2013

10. Etiology of SIB Learned Behavior Form of communication
Form of self-stimulation
Symptom of physical discomfort or organic illness
Neurochemical imbalance
Marler et al. 2014

11. Multidisciplinary Assessment
Differential medical diagnosis
Differential psychiatric diagnosis
Characterization of the SIB
Frequency
Consequences
Intensity
Presumed function
Antecedents

12. Case Presentation

13. Self Injurious Behavior
A.J. is a nonverbal 13 year old boy with Intellectual Disability and Autism Spectrum Disorder. He presents with worsening SIB. He has a longstanding history of biting at his hands (typically seen out of frustration), hyperactivity, and poor focus. He is currently prescribed Risperdal. Over the past 3 months he has developed violent head slapping and scratching along the left side of his face.

14. Medical Evaluation of SIB
Comprehensive History
Children with chronic pain tended to self-injure proximal to the site of their pain
Detailed Physical Examination
SIB may be a manifestation of underlying pain in individuals
Sleep disturbances are increased in individuals with SIB
Patients may also self-injure to engage inhibitory pain pathways

15. Medical Conditions That May Underlie SIB
Anatomical site
Disorder/abnormality
Head
Headache; seizure disorder; subdural hematoma
Eyes
Allergy; poor visual acuity; corneal abrasion; retinal detachment
Ears
Otitis media; poor auditory acuity; foreign body; noise supersensitivity
Nose/sinuses
Allergy; sinusitis; foreign body
Mouth/throat
Dental caries; abscess; periodontal disease; strep infection; tonsillitis
Gastrointestinal
GERD; esophagitis; ulcer; constipation; diarrhea; intestinal obstruction; nausea; lactose intolerance; celiac disease; gluten sensitivity; casein sensitivity
Abdominal
Appendicitis; inguinal hernia
Genitourinary
Dysmenorrhea; urinary tract infection; nephrolithiasis
Musculoskeletal
Fracture
Skin
Skin-picking (lesions/infection)

16. Typical presentation of SIB Hypothesized NT involvement
Genetic Syndromes
Syndrome
Genetic abnormality
Typical presentation of SIB
Prevalence of SIB
Hypothesized NT involvement
CdLS
Mutations on chromosome 5p13.2 of NIPBL gene (50 %) or SMC1A gene (5 %)
Hitting, pulling
25–50 %
5-HT
CdCS
Partial terminal or interstitial deletion on chromosome 5p15.2 of gene CTNND2
Hitting, vomiting/rumination, biting
90 % DA
PWS
Absence of paternally expressed chromosome 15q11–q13 on gene SNRPN
Skin-picking
80 %
LNS
Mutation of chromosome Xq26.2–q26.3
Biting, head-banging, eye poking
85 %

18. Behavioral Aspects of SIB

19. Demographics on Problem Behaviors
Behavior Problems Worst = Early to Mid Teens
First line Treatment = Applied Behavior Analysis
Mistakes often made in addressing problem behavior
Making language too complicated
Rewarding problem behavior by accident
Focusing on the negative
Time pressure
Sarcasm, Irony, or Complex Humor
Ambiguity
Inconsistency
Behavioral problems amongst children with Autism may take many forms as you may have experienced yourself from repetitive movements to major tantrums and self-injury
While the ways these problems tend to change over time, behaviors are typically at their worst in the early to mid teenage years. The problems of a 3-year-old are typically much milder than when that same child turns 13 years old.
Behavior Analysis is typically one of the first places to start treatment. Using principles of how people learn, behavior analysis examines what happens just before and just after a behavior to modify the child’s environment to obtain a desirable outcome
There are several mistakes parents and caregivers may make with problem behaviors
While we may want to be sympathetic, polite, and nurturing, the language we use may be too extensive.
Extended conversations when a child is having behavior difficulties are not helpful and may even inadvertently reward the behavior, causing it to happen more. Instead, it is best to keep verbal communication short, simple, and to the point.
Long, complicated language is difficult for the child to follow and will only further frustrate them
Children with Autism often have many symptoms of attention deficit hyperactivity disorder. Keeping your communications short and specific will help prevent behavioral problems
Another mistake I often see is that when a child is behaving appropriately, caregivers may say, “I leave him alone. I don’t want to mess up a good thing.”
We often times only address children when they misbehave and forget to praise good behavior. When I teach praising good behavior, parents often say it feels uncomfortable or strange. This is a sign that it doesn’t happen enough.
A mistake is also to move too quickly when a difficult task is presented or to even just end the task all together. Taking the time to ensure follow-through and allowing the child to remain relaxed an increase positive responding
Children on the Autism Spectrum, while having a sense of humor of their own, may have difficulty understanding humor from others. Humor may be taken personally. It may be best to keep this to a minimum
Being unclear and assuming a child knows can lead to confusion and more problem behavior. Additionally, children on the Autism Spectrum often have difficulty with unexpected situations and scenarios

20. Behavioral Assessment
Before behavioral assessment, see pediatrician
Steps of Behavioral Assessment
Descriptive Assessment of Behavior
Antecedent  Behavior  Consequence
Many children who exhibit self injury do so as a means of communication. This may include communicating pain or health issues. Before any behavior intervention can attempted, medical issues must be ruled out. If you notice significant self-injury, you should start with a visit to your pediatrician and dentist to ensure there are no health concerns.
For example, a child may hit their head to help alleviate pain from an impacted tooth or ear infection. In either of these situations, no behavioral intervention will help your child to not self-injure.
Behavioral assessment often starts off with observation in a usual scenario, collecting what is called ABC Data. This data is important because it may indicate causes, in some cases, of behavior. They may also provided information to design a Functional Analysis, which we will discuss later.
Their best use is to give a description of what is actually going on in the course of a behavior event. To collect this information, we are most interested in of course the behavior itself but also the last thing to happen before the behavior and what the immediate consequence is for the behavior.

21. Behavioral Assessment
Steps of Behavioral Assessment
Indirect Assessment of Behavior
Interviews with Fixed Questions
Checklists
Rating Scales
Questionnaires
Typically begin with an interview
Descriptive information can then be combined with indirect behavior assessments, gaining valuable information from caregivers about the behavior.
The Functional Assessment Interview is commonly used to assess caregivers about problem behaviors. Its purpose is to get a description of the problem behavior in detail, identify the events, times, and situations that predict when problem behavior will and will not occur, identify consequences that keep problem behavior going, identify the reactions that the behavior gets from others, and make predictions about behavior in relation to all these variables.
Many of the checklists and rating scales used by behavior analysts ask questions aimed at the reason why the child engages in problem behavior
For example, the Motivation Assessment Scale asks: “Does the behavior seem to occur in response to your talking to other persons in the room?” to inquire about gaining attention
Overall, most behavior assessments begin with an interview of someone who knows the child best. Information from this assessment can help direct observations and functional analyses.
During an assessment, the interviewer is interested in aspects of the setting such as noise level, number of people in the environment, specific people in the environment, individuals most likely to see self-injury and those most likely to not, times of day for self injury, child’s daily schedule, number of unexpected changes, medications the child takes, health issues of the child, and places most closely associated with problem behavior.
Assessment will also be interested in the history of the self-injury. When did it start? How long has it been going on? What have you noticed makes it better? Worse? What behaviors are associated with the self-injury?
What consequences for the self-injury have you tried before? How effective were each consequence?

22. Functional Analysis
Experimental Manipulation of Behavior-Maintaining Factors
Attempt to answer the why question of behavior
To get attention (Social Positive Reinforcement)
To get something that they want (Tangible Reinforcement)
To get out of something they don’t like (Social Negative Reinforcement)
To obtain a desired sensation (Automatic Positive Reinforcement) or end an aversive sensation (Automatic Negative Reinforcement)
A functional analysis is a procedure for experimentally testing the reasons a behavior occurs. It recreates what occurred just before and after a behavior, much like what happens in the natural environment, in a controlled setting to identify the reason.
Functional analysis typically tests some or all situations that could occur including
A play situation where the child has free access to things they like, and social attention is provided, but no demands
A situation where attention is withheld unless the problem behavior occurs
A situation to escape where instructions are repeatedly given until a problem behavior occurs
Lastly, an alone situation places the child in an environment, alone, with little to no stimulating materials available
Through functional analysis and functional assessment, we can determine if self-injury occurs because of
Attention received as a result of the behavior including head turns, facial expressions, reprimands, or attempts to soothe.
To get access to something that they want
To end an aversive task or tasks or some other undesired event
Or to feel or not feel some sensation they are currently experiencing.
Functional analyses may find that a child acts out for 1 or more of these reasons. It is the best test for determining why self-injury occurs so that an intervention can be planned to meet that need some other way.

23. Functional Analysis of Self Injury
Self injury may be learned or Biological
Assessment drives Intervention
Attention Interventions
Tangible Interventions
Escape/Avoidance Interventions
Automatic Reinforcement Interventions
A research study of 152 people with self-injurious behaviors found that social reinforcers maintained behavior in over 2/3 of people and automatic reinforcement for ¼ of cases
This data shows the ability and importance of identifying what maintains self-injurious behavior
This research also displays the importance of knowing the why in order to treat self-injury
For instance, attention-based interventions may include ignoring self-injury or time-out strategies for self-injury, teaching individuals with little-to-no verbal repertoire a way to request attention, scheduling delivery of free reinforcement, increasing social interaction opportunities, or modifying the environment so the child has easier access to social reinforcement
For tangible-based intervention: withholding desired items when self-injury occurs, teaching individuals to ask for things they want, giving tangibles for appropriate behaviors, or increasing free access to desired items
For Escape and Avoidance intervention: continuing the instruction and providing guidance until the task is completed while ignoring the problem behavior, teaching an appropriate way to request help or breaks, breaking tasks down into simpler tasks, scheduling frequent breaks, increasing rewards for staying involved, or gradually removing stimuli that lead to self-injury from the environment
For Automatic Reinforcement interventions: removing all access to self-injurious behavior when and where possible by masking sensations or blocking responses, enriching the environment with increased social interaction or increased access and training with interesting materials, or teaching ways to requests desired items
From Iwata et. al. (1994b)

24. Medication Management of SIB

25. Pharmacological Algorithm
Assessment algorithm
Patient on psychotropic medications?
Yes No
Evaluate effectiveness and tolerability
Reduce or discontinue ineffective meds
Evaluate for co-morbid psychiatric disorders
Anxiety, OCD, Compulsive SIB, or Depression
Low-dose SSRI
Catatonia
BDZ
ECT
Bipolar Disorder
Atypical AP
+/- Mood stabilizer
Psychotic Disorder
Typical AP
No Comorbidity
Risperidone
Aripiprazole
Minshawi et al. 2014

26. Pharmacologic Interventions
Atypical Antipsychotics
Risperidone
FDA approved for treatment of irritability, including symptoms of aggression, self-injury, and severe tantrums in children and adolescents with ASD
Aripiprazole
FDA approved for irritability associated with ASD in children and adolescents
Abilify - Partial agonism at D2 and 5HT1A receptors

27. Pharmacologic Interventions
Typical Antipsychotics
Haldol, fluphenazine, chlorpromazine, thioridazine
Small sample sizes, non-specific measurement of SIB
Motor side effects and mixed efficacy
Decline in use

28. Pharmacologic Interventions
Selective Serotonin Reuptake Inhibitors (SSRIs)
Fluoxetine
Treatment of SIB within context of an underlying psychiatric disorder
Favorable response for ‘compulsive’ forms of SIB
Fluvoxamine
Improved SIB in some adult cases
Studies failed to show consistent benefits related to SIB in children with ASD
Fluoxetine –
Case reports of improved SIB in patients with ID and chronic depression
Suggests a role for SSRIs in treatment of SIB within context of an underlying psychiatric disorder
Favorable response for ‘compulsive’ forms of SIB
Fluvoxamine (McDougle et al 1996)
Improved aggression
Improved SIB in some adult cases
Studies failed to show consistent benefits related to SIB in children with ASD

29. Pharmacologic Interventions
Mood Stabilizers
Valproic acid
Lamictal
Gabapentin, topiramate, carbamazepine
Lithium
N-acetylcysteine (NAC)
One RCT (Hardan et al. 2012) found reduction in irritability /agitation (including SIB) and repetitive behaviors in children with ASD
Lithium
Small studies in 1970s found it effective for SIB in individuals with ID (not blinded)
Tyrer et al (1984)
Double-blind, placebo-controlled study (n=26) individuals with ID
Improved aggression but not SIB
Antiepileptic Drugs
Valproic acid
Some benefit in adults with ID and aggression or SIB
Lamictal
50% reduction in SIB in an adolescent with profound ID
Gabapentin, topiramate, carbamazepine
Decreased or eliminated SIB in case reports or small studies
NAC - Antioxidant, used for acetaminophen overdose. Restores hepatic concentration of cysteine → glutathione synthesis (predominant antioxidant in the brain)
Modulates glutamatergic function → ultimately inhibits neuronal release of glutamate
Emergent treatment for trichotillomania

30. Pharmacologic Interventions
Naltrexone
Opioid antagonist
Efficacy of naltrexone was suggested in small controlled trials by King in 2000
Larger controlled trials have not shown benefit over placebo
Cochrane review (2013) -
4 studies, 42 participants
Data too limited to reach definite conclusions
A. Roy et al (2015) review
10 RCTs, 124 participants (any age, IQ < 70) (49 had autism)
61 showed statistically significant improvement in SIB
Doses mg/kg or mg daily)
More marked improvement in those with severe and profound ID
Trials do not predict who will respond to opioid antagonists
Naltrexone
Opioid antagonist
Efficacy of naltrexone was suggested in small controlled trials by King in 2000
Larger controlled trials have not shown benefit over placebo
Cochrane review (2013)
4 studies, 42 participants
Data too limited to reach definite conclusions

31. Summary SIB is prevalent in individuals with ASD
Approach to SIB should begin with detailed assessment
Presence of SIB is associated with negative outcomes
Medical
Psychiatric
Predictors
Behavioral
Adapt treatment approach to address the underlying causes of SIB
Impulsivity
Stereotypy
Intellectual impairment

32. Summary Future directions Development of clinical guidelines
Multidisciplinary teams
Training medical providers
Early identification of medical conditions which precipitate SIB
Pharmacological interventions

34. References
Hanley, G.P. (2012). Functional assessment of problem behavior: Dispelling myths, overcoming implementation obstacles, and developing new lore. Behavior Analysis in Practice, 5,
Iwata, B.A., Dorsey, M.F., Slifer, K.J., Bauman, K.E., & Richman, G.S. (1994a). Toward a functional analysis of self-injury. Journal of Applied Behavior Analysis, 27, – 209.
Iwata, B.A., Pace, G.M., Dorsey, M.F., Zarcone, J.R., Vollmer, T.R., et. al. (1994b). The functions of self-injurious behavior: An experimental-epidemiological analysis. Journal of Applied Behavior Analysis, 27, – 240.
Neef, N.A., & Peterson, S.M. (2007) Functional behavior assessment. In Cooper, J.O., Heron, T.E., & Heward, W.L. (Eds.) Applied behavior analysis (2nd ed., pp. 500 – 524).Upper Saddle River, NJ: Pearson Education.
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35. References
Adler B.A., Erickson C.A., et al. (2015). Drug-refractory aggression, self-injurious behavior, and severe tantrums in autism spectrum disorders: A chart review study. Autism 19:
Hazen E.P., Stornelli J.S., McDougle C.J. et al. (2014). Sensory Symptoms in Autism Spectrum Disorders. Harvard Review of Psychiatry 22:
Marler S., Sanders K.B., & Veenstra-VanderWeele J. (2014). N-Acetylcysteine as Treatment for Self-Injurious Behavior in a Child with Autism. J Child Adolesc Psychopharmacol 24:
Minshawi N.F. (2008). Behavioral Assessment and Treatment of Self-Injurious Behavior in Autism. Child Adolesc Psychiatric Clin N Am 17:
Minshawi N.F., Hurwitz S., Fodstad J., Biebl S., Morriss D., & McDougle CJ (2014). The association between self-injurious behaviors and autism spectrum disorders. Psychology Research and Behavior Management 7:
Minshawi N.F., Hurwitz S., Morriss D. & McDougle C.J. (2014). Multidisciplinary Assessment and Treatment of Self-Injurious Behavior in Autism Spectrum Disorder and Intellectual Disability: Integration of Psychological and Biological Theory and Approach. J Autism Dev Disord. doi /s
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36. References
Rana F., Gormez A., Varghese S. (2013). Pharmacological interventions for self-injurious behavior in adults with intellectual disability (Review). The Cochrane Collaboration. Issue 4.
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