“They” is a Four Letter Word

About fifteen years ago we were conducting a training session for the service providers of one of our early clients. During the course of the two-day class we learned about a gentleman who liked to remove his athletic socks, stuff them into his mouth as far as they would go and then, when someone came within range, whisk the sock out of its resting place and give the unsuspecting transgressor a soggy “whap!” This behavior was chalked up to being just an unusual thing that this fellow did to amuse himself and it continued undisturbed for several years.

“Well, you know, that’s just the way “they” behave.”

The medical and dental needs of individuals with intellectual and developmental disabilities are often overlooked due to problems with formal communication skills. The issue is often compounded by the lack of an advocate who understands how the person communicates need, pain, discomfort or other kinds of distress. According to some sources, behavioral issues can be directly linked to medical or dental issues up to 80% of the time. Misinterpretation of challenging behaviors can lead to misdiagnosis of health issues and delay of appropriate treatment. If the underlying cause worsens, escalation of behavioral issues can potentially result in significant injury to self or others. In some cases fatal events have occurred when issues which might have been addressed if identified in a timely manner have failed to receive needed attention. Please keep in mind this article is not meant to provide a diagnosis of a behavioral or physical disorder, but rather to help guide discussions with providers of medical, dental and psychiatric services.

Rule Number One: Everyone Communicates. We just need to listen or see.

There are several reasons why medical and dental issues may be exhibited behaviorally. This first is one which almost everyone can relate to: When we don’t feel good we can become frustrated and grumpy. If you’ve ever had a headache or a cold and been cranky or withdrawn from your significant other, kids, pets or anyone else in your environment you’ve been there. The lack of ability to describe symptoms or communicate pain may make it difficult for all but the most familiar and observant of caretakers to interpret the existence of a problem. We merely see the resultant crying, withdrawal and verbal as well as physical outbursts strictly as a behavioral issue.

Rule Number Two: That which looks maladaptive is often highly functional.

An individual’s attempts to alleviate pain and other symptoms can take some intriguing forms. Self-slapping, picking, eye-gouging, head-banging and many other forms of self-abuse are often the person’s way of distracting from the pain of the underlying problem. It may look like it hurts, but it feels better than the alternative. There has been shown to be a 30% correlation of PICA, the ingestion of non-food items, and hand-mouthing with undetected gastroesophageal reflux or chronic heartburn. Placing items in the stomach can reduce the effects of the rising acid, also producing extra saliva or stimulating the upper portion of the esophagus. Rectal digging, self-induced vomiting, skin-picking or scratching and many, many other supposed behavioral issues can be tied directly back to physical issues. Even if the apparent behavior has been long-standing (“He’s always done that!”) it may still signify an underlying medical or dental complaint.

An other commonly missed medical condition that can easily be misinterpreted as a behavioral issue is a seizure disorder. Common signs that are seen with misidentified seizure activity are shouting, unsafe running or walking into dangerous situations, stripping of clothing, combative behavior and many forms of self-injury. Factors that usually distinguish a seizure from a behavioral outburst are the lack of a precipitating event (for example, an argument with someone), repetition of the same activity with each episode (stereotypic behavior) and fatigue, confusion and apparent lack of recollection following the event. Treatment of these “behavioral issues” with typical psychiatric medications has been known to increase the frequency of outbursts because these drugs can actually lower the seizure threshold.

Rule Number Three: We often have the means to make a difference.

As someone supporting and advocating for an individual with communication challenges there are several things that can be done to address behavioral issues that are related to underlying medical problems. The obvious start is a comprehensive medical and dental exam, particularly if it has been a while since this was last done. For the benefit of both the provider and recipient of health care services make sure that someone who is familiar with the person and understands their health history and communication cues is present. Dialogue such as, “We’ve been concerned because he’s been pulling at his left ear lately.

The lack of ability to describe symptoms or communicate pain may make it difficult for all but the most familiar and observant of caretakers to interpret the existence of a problem.

He’s never done that before” or “I recently learned that hand-mouthing is very often related to chronic heartburn and was wondering if that might be why she has been doing this for several years” can be a helpful way to prompt discussion and investigation into matters of concern.

So what ultimately became of the Sweat Sock Bandit? First of all, I still don’t know whether this activity is more appropriately described as PICA, hand-mouthing or the perfect fusion of both. It doesn’t matter. The provider was astute enough to recognize the existence of a potential problem and have him evaluated. His chronic reflux was identified and treated and the long-standing behavior, his odd little source of amusement, stopped for good. 

Criminal Justice: Arrest for Seizure-Related Behavior; copyright 2007; The Epilepsy Foundation