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.