Unlocking Behaviors: Psychiatric Symptoms

Unlocking Behaviors: Cognitive Changes

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how cogntivie changes can be addressed in an interdisciplinary fashion.

Jerome is a 23-year-old man with a mild intellectual disability who is a proficient verbal communicator, both expressively and receptively. He is a reliable historian and self-reporter who easily conveys his wants and needs. Jerome has no known medical issues but has diagnoses of psychosis and depression for which he currently takes aripiprazole and mirtazapine. He works washing vehicles for the agency where he resides and enjoys playing basketball at the local community center. 

Jerome moved to his current home approximately six months ago, where he resides with three other men close to his age who have similar social and adaptive skills. Over the last four to six weeks, staff members have noted that Jerome has begun refusing to attend work and is not going to the community center. What was once ordinary and occasional frustrations with housemates have now turned to yelling and cursing, slamming doors, and walking away from his home. 

When speaking with Jerome, he is having difficulty focusing and is fidgety. He self-reports that he is sleeping poorly, “needs anger management,” and is “sick of these people bothering me.”  When asked about a recent incident with his housemate that resulted in a physical altercation and law enforcement involvement, Jerome immediately becomes agitated and begins pacing, cursing, and making threats to harm people. Further discussion with the staff has noted that Jerome has been upset for several days and has intense emotional reactions to innocuous social interactions and general task requests.

Medical Discussion

Upon the first review of Jerome’s situation, it seems that these changes he is exhibiting are likely due to environmental and/or psychological conditions. However, because there are so many underlying medical conditions that can cause behavioral changes in people with intellectual and developmental disabilities (IDD), we must always look at the possibility of some treatable medical cause. Even though Jerome is noted to be a good communicator, a person may have difficulty expressing changes in their body, including discomfort.

  • Could Jerome be experiencing pain from something like gastroesophageal reflux disease (GERD) that is causing agitation and a short temper?
  • Could he be waking up at night because of reflux symptoms, and then, because of poor sleep, he is now agitated?
  • Could there be a problem with constipation causing a chronic uneasy or painful feeling?
  • Could he be experiencing medication side effects which include mood or mental changes like agitation and confusion?

It’s always worth evaluating for an underlying medical cause of any behavior change.

Behavior Discussion

As with all people, communication is a key component of our lived experience. The most desirable first action, as a behavior analyst, is for us to be able to observe, interact, and communicate with the people we work with. Jerome has an advantage, in some ways, in that he is a proficient expressive and receptive communicator. Although he may not always express himself in socially appropriate and preferred manners (i.e., with undesirable behavior), inviting Jerome to sit in a calm, quiet environment, away from peers and aversive stimuli, can be incredibly cathartic for him.

When meeting with people who are agitated but do not jeopardize their health and safety, it is important to model the behavior we wish for them to exhibit. This isn’t necessarily done formally, but sitting down, talking calmly and steadily, and finding a quiet area can significantly assist. Doing more listening than talking is also advisable, as well as providing affirming statements when possible and avoiding lecturing! Lastly, and perhaps most importantly, recurrent reminders of potential punishment rarely reduce agitation!

Utilizing effective communication strategies is valuable for assisting the agitated person and allows us to glean valuable insight from the person. Much of the information known about Jerome’s current status comes from him, but also from his willingness to sit and talk with a member of the interdisciplinary team. The interactions with Jerome aim not to punish or lecture him about his behavior but to understand the underlying issues and possible resolutions better.

Outcome

After meeting with the Behavior Analyst, Jerome’s behavioral characteristics and general psychobehavioral status were presented to the interdisciplinary team, including the psychiatrist, as him having a “short fuse,” sustained agitation over several days, “racing mind,” fidgety, “gross overreaction to benign occurrences,” and misperception of social and environmental events. The team agreed that an adjustment to the psychotropic medication regimen would be warranted, which was done slowly over three months. In the eight months since the last medication change, Jerome has shown no instances of aggression, had no contact with law enforcement, obtained competitive employment, and returned to routine basketball games at the local community center. 

As service providers and interdisciplinary team members, we are responsible for ensuring the global health and well-being of the people we serve. Part of this responsibility includes recognizing that some people do benefit from the use of psychotropic medications. A healthy mind and body provide the foundational support that increases the quality of life of any person. 

Author Bio: 

Ley is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC. 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD. He is also the host of the “IDD Health Matters” podcast.

Unlocking Behaviors: Cognitive Changes

Unlocking Behaviors: Cognitive Changes

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how cogntivie changes can be addressed in an interdisciplinary fashion.

Jamie is a 48-year-old dynamic, energetic, fun-loving person who happens to have Down syndrome. She lives in a small community-based group home with two other people. She’s known as the jokester in the group and always has a way of making her friends laugh. She is an impeccable dresser and fancies cool hairstyles, which she highlights with fashionable hair accessories.

Jamie experienced a pretty big traumatic event in her life when she lost her mother two years ago. It had quite an impact on her. She became a bit withdrawn. She was less interested in many of her usual activities, and as her friend said, “She just wasn’t acting like Jamie anymore.”   Her friends noted that she was less concerned about what she wore, sometimes wearing the same clothing two days in a row. Her hairstyle became much more straightforward and even appeared a bit messy at times. Her usual witty jokes seemed more challenging to come by for her, and often, she took long pauses before answering questions.

Over time, Jamie seemed to need more assistance with usual activities such as preparing meals, and later, she even seemed to have difficulties feeding herself. She occasionally chose a short-sleeved shirt to wear when it was 30 degrees outside, and more than once, she’d put her shirt on backward.

Behavioral Discussion

In the behavioral realm, one of the most challenging things is delineating between psychiatric symptoms (e.g., Jamie’s possible depression symptoms), dementia symptoms, and normal aging in a person with intellectual disabilities.  Over time, I have developed an approach of “prove to me it is dementia.” I have adopted this approach because, far too often, dementia is a diagnosis that seemingly is arrived at too quickly and easily amongst interdisciplinary teams, including physicians and other medical professionals. There are many reasons a person can exhibit changes in cognitive status, mood, affect, or simply changes in their preferences. As behavior analysts, it is critically important for us to keep an eye on all the possible reasons a person could be exhibiting changes in their behavior as we work to delineate changing behavioral presentations as a person ages. 

One of my most commonly used tools for making this delineation is a dementia screening tool developed specifically for people with intellectual disabilities – The National Task Group on Intellectual Disabilities and Dementia Practices – Early Detection Screen for Dementia (NTG-EDSD). The NTG-EDSD can be used for the early detection screening of those adults with an intellectual disability who are suspected of or may be showing early signs of mild cognitive impairment or dementia. The NTG-EDSD is not an assessment or diagnostic instrument but an administrative screen that can be used by staff and family caregivers to note functional decline and health problems and record valuable information for further assessment (NTG, 2013).   Learn more here: https://www.the-ntg.org/about-the-ntg . 

Jamie would likely benefit from the completion of a dementia screening tool, such as the NTG-EDSD, which is recommended on an annual basis for individuals with Down syndrome at the age of 40. This would allow her staff, with a distal and working knowledge of Jamie, to provide insight into the specific areas of her life in which changes have occurred, such as language & communication, activities of daily living, behavior and affect, and potential medical issues, to name a few. These areas can help guide the interdisciplinary team’s decision-making as they work to “prove that it is dementia.”

Screening for dementa
Medical Discussion
Beta-amyloid plaques

Jamie has many classic signs of depression and had a good reason for being depressed with the loss of her mother. However, because Jamie has Down syndrome, she is also at a much greater risk for Alzheimer’s dementia, and the signs and symptoms can overlap. People with Down syndrome have an extra copy of chromosome 21, which also carries a gene responsible for producing a protein called amyloid precursor protein. Too much buildup of this protein in the brain leads to beta-amyloid plaques, which are implicated as a major cause of Alzheimer’s disease. It is estimated that 50% or more of people with Down Syndrome will develop Alzheimer’s, and they are more likely to develop it at an earlier age than those without Down Syndrome.

It’s important to rule out other causes for symptoms that are consistent with dementia. The following can present with signs resembling dementia: 

  • Mental health conditions
  • Brain tumors
  • Vitamin deficiencies
  • Medication side effects
  • Thyroid, kidney and liver disease

There is new and promising research in Alzheimer’s disease, including blood tests that can help diagnose Alzheimer’s dementia. While these tests are currently not available everywhere, soon, we should have widespread availability of blood testing to diagnose the condition. There have also been advances in medication treatment options for dementia, and current trials are promising for the availability of effective treatment options in the near future. Learn more about Alzheimer’s and other dementias at https://www.alzheimers.gov/.

Outcome

Jamie was initially evaluated by a neuropsychiatrist and was diagnosed initially with depression with secondary concern for Alzheimer’s. Medication treatment for depression did improve some of her symptoms, but after testing, talking with her support team, and reviewing her NTG-EDSD screen, she was diagnosed with Alzheimer’s dementia. She is currently receiving support from her team and friends, who have been educated on best practices for supporting people with dementia.

Author Bio: 

Ley is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC. 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD. He is also the host of the “IDD Health Matters” podcast.

Unlocking Behaviors: Gastrointestinal Distress

Unlocking Behaviors: Gastrointestinal Distress

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how behavioral issues can be addressed in an interdisciplinary fashion.

Rick is a 43-year-old man with a moderate intellectual disability. He is very active and is described as a “high-energy” person. He was transferred to a new group home after his last one closed due to the inability to find enough staff to meet the needs of the people they supported. It was immediately noted by the new support team that Rick frequently searched for things to eat, and most of it was not food. He would look for objects on the ground, find whatever he could, and eat them. A repairman was working on the heater, and Rick managed to grab a small screw and swallow it before anyone could stop him. There was a tear in the vinyl flooring in his room, and staff noted one morning that the tear was a bit larger. Later, they saw him picking the flooring, breaking small pieces off, and eating them.

His staffing needs increased to monitor him more closely and prevent him from ingesting harmful objects. His level of aggression began to increase as staff would attempt to keep him from eating non-food items.

Photo Credit: 2023 Rick Guidotti, Positive Exposure. All Rights Reserved.

Medical Discussion

Eating things of non-nutritional value or non-food items is called pica. People may search for objects on the ground, pull stuff off the wall, or constantly search for some object to chew or swallow. It is more commonly seen in children, pregnant women, and people with conditions such as autism, intellectual disabilities, and schizophrenia. Many forms of pica involve one particular item that a person ingests. 

Examples include:

  • Chalk
  • Clay
  • Dirt
  • Coffee grounds
  • Ice
  • Paper.
pica definition examples

Sometimes pica is associated with underlying medical conditions. One of the more commonly seen conditions in the general population is iron deficiency which may be associated with an ice pica.

In people with intellectual and developmental disabilities, a condition that is noted to be commonly associated with pica behavior is gastroesophageal reflux disease (GERD). One suspected reason for this association is that a person learns that if they swallow more frequently, the acid that causes the pain is washed back into their stomach. They then begin looking for items to eat to stimulate salivation to wash down the acid.

Another commonly seen presentation of GERD is someone who likes to chew on a sock or other object. If you support someone who does this or has pica behavior, you might consider asking for an evaluation for GERD. They may be chewing to stimulate salivation to wash the acid down to relieve pain. Consideration should also be given to checking for Helicobacter Pylori infection, which has been implicated as a cause of GERD.

Behavioral Discussion

When examining pica behaviors, the first question is, “Are there immediate health and safety concerns?” As a few quick examples, is the person in immediate danger from consuming toxic chemicals, uncooked food, sharp items, or unknown items/substances? If so, medical assistance should be sought immediately.  

Second, “What is the historical dynamic of this behavior?”  

In the case of Rick, long-term pica behaviors can result from undiagnosed/untreated medical conditions in conjunction with learned behaviors that actually have logic in their engagement. 

To continue with Dr. Escudé’s point, if a person consumes the brittle, chalk-like substance comprising drywall, they can learn that this eases the discomfort in their stomach, throat, and mouth (e.g., GERD symptoms). The presentation we, as behavior analysts hear is, “They are eating the walls!”  In reality, they have found an “antacid” in their environment that is managing the discomfort they are experiencing.

Behaviorally, pica behaviors should be presumed to require a multidisciplinary approach until proven otherwise. The rare but eye-catching “Rapunzel Syndrome” illustrates how pica behaviors are complex and require insight from various professionals. The combination of trichotillomania (pulling out your hair) and trichophagia (chewing/consuming hair) requires a multi-faceted plan of care that requires behavioral management, psychiatric consultation for potential underlying diagnosis, routine primary care check-ups, and crisis management for potential medical needs – to name a few. 

Chronic pica behaviors can be reduced, particularly if the underlying cause is related to a medical condition. However, the person may still exhibit the pica behavior “out of habit.”   Using the example of a person consuming drywall, they have learned that this behavior effectively alleviates the discomfort they feel. At the beginning of treatment (e.g., taking medication), they may continue to engage in the behavior, as they have to learn that taking medication is a more effective means of reducing discomfort. The person should be monitored after the introduction of a medication to see if the behavior decreases, stops, or even increases, as the medication type, dosing, or other factors may not be the “right fit.”  In other words, if the medication is ineffective in reducing the discomfort, the pica behavior will likely continue. 

If the behavior abates after the introduction of any intervention (e.g., medical and/or behavior) but suddenly re-appears, there could be an acute stimulus that is exacerbating the existing diagnosis and should be evaluated by a medical professional. The pica behavior should also be considered as potentially indicating other medical concerns as the person may have generalized the pica behaviors using the logic, “Well, this helped me the last time my stomach hurt.”

Outcome

Thanks to an astute direct support professional and a responsive team that was aware of the association between pica and GERD, Rick was taken to see a gastroenterologist who performed an endoscopy. He noted numerous gastric and esophageal erosions consistent with GERD. Rick was started on a proton pump inhibitor, and over the next several weeks, his pica behavior slowly lessened. His suffering from GERD symptoms, his overall health risk, and the need for additional staffing were all reduced, resulting in improved quality of life for Rick, his supporters, and the support agency.

Author Bio: 

Ley is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC. 

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and President of IntellectAbility. He has over 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD. He is also the host of the “IDD Health Matters” podcast.

Unlocking Behaviors: Constipation

Unlocking Behaviors: Constipation

IT’S HELPFUL TO KNOW WHAT SOME OF THE MORE COMMON CAUSES OF A CHANGE IN THE LEVEL OF ALERTNESS OR ACTIVITY (“NOT ACTING RIGHT”) CAN BE. AND FOR PEOPLE WITH IDD, ONE OF THE MOST COMMONLY SEEN CAUSES IS CONSTIPATION.  I  8 MIN  

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM
Published by Helen Journal

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how behavioral issues can be addressed in an interdisciplinary fashion.

Ron is a 41-year-old man with a severe intellectual disability. He recently moved into a group home after having lived with his parents for most of his life, but because of health issues in both of his aging parents, they can no longer provide the level of support he needs. Ron uses few words but can mostly make his needs known through gesturing and limited sign language. He eats and goes to the bathroom on his own. He loves watching baseball on TV and goes to games at the local minor league stadium when he can. He gets pretty excited when the game comes on and sometimes won’t eat because of his excitement. Overall, he is adjusting well to his new living arrangement, but he seems to be missing his parents, especially when the games come on TV, as he used to watch them with his dad.

Over a period of 3 days, Ron seemed to have become less active. He began sitting more of the day, sometimes pulling his knees up to his chest when in the chair. He started eating less, as well. The “big game” was set to air in a few hours, but Ron wasn’t very interested in it. This was unusual for Ron, and the staff brought it to the nurse’s attention.

Medical Discussion

One of the most common chief complaints provided by a supporter of a person with IDD during an office visit or an emergency department visit is “He’s just not acting right.” For many clinicians, this leaves the door wide open for the reason being something simple and easily treatable to something as much more severe and potentially life-threatening. It’s helpful to know what some of the more common causes of a change in the level of alertness or activity (“not acting right”) can be. And for people with IDD, one of the most commonly seen causes is constipation.

Constipation is one of what we call the “Fatal Five,” the top preventable causes of illness and death in people with IDD.

Constipation can cause a wide range of symptoms, including:

  • Lethargy
  • Lack of interest in usual activities
  • Not wanting to eat
  • Sitting or lying with the knees brought up to the chest or curled in a ball
  • Abdominal guarding
  • Restlessness
  • Aggression without any apparent reason.

I’ve been frequently known to say, “Think about constipation first,” as it can be a common cause of an acute change in behavior.

In addition to changes in behavior, I’ve noted other changes, including:

  • Low-grade fever
  • Vomiting
  • For a person with a seizure disorder, an increase in their seizure frequency.

On multiple occasions, I’ve had patients experiencing an acute increase in seizure activity who were found to be constipated. Once the impaction was resolved, their seizure pattern when back to baseline. Because of this, our standard practice was to check for an impaction when they presented with a seizure flurry.

Constipation is one of what we call the “Fatal Five,” the top preventable causes of illness and death in people with IDD.

Why is constipation such an issue for people with IDD? 

There are several reasons, including that many medications people are more likely to take can cause anti-cholinergic effects, which can dry things up and slow things down. Slowing transit through the intestine allows for increased water absorption, which firms up the stool. Movement of large muscle groups helps stimulate bowel activity, and for some, this may be limited. Inadequate fiber and fluid intake can negatively impact bowel regularity. And some with pica behavior may ingest non-food items that can cause bowel blockage.

Behavioral Discussion

From a behavioral standpoint, when we work with individuals with limited or highly idiosyncratic communication skills who are exhibiting acute changes in behaviors, particularly ones that can be described as “odd,” “different,” or “not acting right,” we always want to know if the behavior has occurred before. For Ron, has he engaged in this type of change in positioning/posturing behavior in the past? If so, what was the outcome or resolution? Was there a clear cause and specific intervention that led to the cessation of the positioning behavior (and subsequent resolution of the underlying cause)? This is a classic example of “the best predictor of future behavior is past behavior.”  

We, as service providers, frequently hear “think medical first,” but what exactly does this mean? 

  • One way is to observe if there is an area or region of the body focused on by the acute behavior. For Ron, his behavior of bringing his knees to his chest compresses his abdomen, which can give a clue to an area that should be focused on.
  • Additionally, is there a logical reason for the behavior? For Ron, bringing his knees to his chest in a seated position, although “odd,” can relieve pressure by promoting gas relief and/or a bowel movement.
  • Another way of thinking from a medical point of view is noting the connection between avoiding food and not having bowel movements. In this scenario, I often think, “Well, something is going on between when it goes in and when it comes out. Should we start following the path from the bottom or the top?!” 

For Ron, behavioral interventions to manage future constipation could include simple communication strategies and toileting logs. If Ron does not currently have an effective means of communicating pain or discomfort, it would be beneficial to teach Ron a basic sign or gesture to assist him in communicating if he does not feel well in any scenario. Regarding toileting logs, keeping simple documentation of bowel movements can help identify potential constipation issues early to prevent more severe gastrointestinal concerns, such as fecal impaction. 

Outcome

The nurse knew that Ron had experienced bouts with constipation in the past and that he usually had similar behaviors when he did. After confirming a rectal fecal impaction, his physician recommended an enema and a short-term laxative. He also recommended a consultation with a dietician to increase the fiber content of his diet slowly and included the recommendation to concurrently increase fluid intake as his fiber intake increased. This is important as increasing fiber alone could make constipation worse. Within a few weeks, his fiber and fluid intake had increased to the recommended range, and his recurrent bouts of constipation resolved. Not surprisingly, his overall demeanor was more positive as well.

The Authors

Risley “Ley” Linder 
Ley is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC.

Dr. Craig Escudé
Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians, the American Academy of Developmental Medicine, and President of IntellectAbility. He has more than 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the Curriculum in IDD Healthcare,” an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD.

Unlocking Behaviors: Head-Banging

Unlocking Behaviors: Head-Banging

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM
Published by Helen Journal

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how behavioral issues can be addressed in an interdisciplinary fashion. 

Sarah is a 45-year-old woman with a severe intellectual disability. She has lived in the same group home for 12 years, longer than any of her current support staff has worked there.

She is described as mostly cooperative but not very interactive with others. She does not use words to communicate but can usually indicate her preferences and needs with gestures. She is a picky eater, and her support staff has reported that occasionally, Sarah will hit herself in the head or hit her head on a nearby firm surface, such as a wall or table. She has exhibited this behavior intermittently for as long as they have known her. It appears to be “just want Sarah does, sometimes,” and hasn’t been looked into much further.

A couple of times a year, Sarah has been noted to have an upper respiratory tract infection, but overall is healthy. She sees her doctor annually for a physical exam, which is often limited because she will become agitated and hit her head. She sees the dentist twice a year, but, again, she receives minimal intervention because of her agitation.

Medical Discussion

Head-banging behavior can have several etiologies but should never be seen as “just something that people with IDD do.” Even when someone has done this for many years, there still may be a treatable underlying cause.

Some people have what I call a “limited repertoire” of actions or responses to distress or pain. Just because someone is banging her head in response to pain does not always mean that the pain is in a part of their head. For instance, a person may exhibit head-banging behavior as their primary means of expressing discomfort in any part of their body, including if they have an ingrown toenail. They may also exhibit that same behavior in response to social or environmental distress as well. That said, let’s talk about common medical causes of head pain that might trigger agitation or self-injurious behavior.

When looking for a cephalic cause of discomfort, I try to think of the possibility of it coming from “any hole in a person’s head.” Let’s look at them. 

  1. Eyes—glaucoma, a foreign body, conjunctivitis. 
  2. Ears— foreign body, cerumen impaction, otitis externa, otitis media, middle ear effusion.
  3. Nose—foreign body, sinusitis, allergic rhinitis.
  4. Mouth—dental abscess, dental caries, pharyngitis, ulcers, tongue or lip trauma from an accidental, self-inflicted bite.
  5. Other types of head-related discomfort include various types of headaches, scalp lesions, vision disturbances, or hearing disturbances.

I’m probably leaving out a few, but the idea is to think about all possible causes of pain or discomfort that could be causing a behavior change. Once all medical causes have been ruled out, it’s time to look for other potential reasons, including those from social, environmental, and behavioral perspectives.

Behavioral Discussion

Behaviorally, the presentation of head-banging and other forms of self-abuse can be confounding for caregivers and practitioners alike. Sarah’s head-banging presentation brings to light three primary areas of focus:

  • The function(s) of the behavior
  • Temporal dimensions
  • Potential medical concerns, as already noted.

In behavior analysis, we work to identify the function of (or reason for) behavior, which we categorize into four primary areas:

  1. Access to attention
  2. Access to items/activities
  3. Escape/avoidance
  4. Sensory (e.g., pain attenuation).

In the context of potential medical concerns, Sarah’s periodic head-banging could be related to pain attenuation/discomfort for recurrent respiratory infections. Further expounded, head-banging behaviors could also be impacted by the inability to have more comprehensive medical exams and preventative care, such as going to the dentist, which can lead to poor oral health and painful dental issues.


Sarah has been noted to engage in head-banging behaviors in two scenarios: intermittently at home and at medical appointments. As with most behaviors, they do not have a singular function, and although the behavior may look the same across time, settings, and people, the behavior can serve different functions. In Sarah’s case, we need to rule out possible medical causes (sensory function) but also address head-banging behavior when attending medical appointments (escape/avoidance function). In other words, we have identified one behavior but two functions, which means we will need multiple (at least two!) strategies/interventions to address Sarah’s head-banging behavior.

Of note when reviewing Sarah’s head-banging behaviors is the mention that the behavior is intermittent and she is a picky eater. Intermittent self-abusive behavior, only occurring two to three times a year, supports the notion of an acute medical condition, as opposed to self-abusive behavior that occurs at high rates or frequencies, which could lean towards a possible self-stimulatory function. Of particular interest, behaviorally, the staff mentioned she is a picky eater. Colloquially, being a picky eater is based on likes and dislikes. However, what if being a picky eater is rooted in aversion (because of pain)? For example, “Sarah always eats pudding at snack time, but sometimes she refuses to eat cookies, which we know she likes.” Is Sarah periodically refusing cookies because they are crunchy and avoiding them due to pain and discomfort while eating? These temporal dynamics of when the behavior is occurring over time, the time of day (e.g., “Is head-banging more likely to occur at mealtime?”), and other changes in behavior (e.g., food preferences) are all components a behavior analyst would examine.

From a future programming perspective, addressing the barriers impeding successful routine medical appointments (e.g., physician and dentist) would be beneficial. Sarah was noted to not be interactive with others, and communication deficits may be impacting her globally in that she is unable to effectively communicate pain and discomfort, but also stress and anxiety related to medical appointments. Increasing her ability to communicate effectively, instead of head-banging behaviors, and eliminating barriers to preventative medical care, are fundamental for Sarah’s long-term health and quality of life.

Outcome
As it turns out, Sarah was seen by the dentist and was noted to have yet another dental abscess. Her teeth were in exceedingly poor overall condition. After careful consideration and discussion with her support team and family, the decision was made for her to undergo a full mouth extraction. Indeed, the better option would have been for her to have been able to receive proper preventive and restorative care throughout her life, and I’ll leave that to my dental colleagues to discuss in more detail. However, for Sarah, this was felt to be the best option.

After Sarah healed from her surgery, she began eating much better and was smiling more, and the incidence of her head-banging behavior dropped by 90 percent. This points to the likelihood that she had been experiencing significant dental pain for years.

While this was a heart-breaking case, it’s all too common. Remember that just because someone has always had a particular behavior, it does not mean it’s not due to an underlying, treatable cause.

The Authors

Ley Linder is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC.

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and is the President of IntellectAbility. He has more than 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare”, an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD.