Unlocking Behaviors: Repeated Medical Complaints
By Ley Linder, MA, M. Ed, BCBA and 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. Dr. Craig Escudé and Ley Linder are the proud recipients of the 2024 AADMD Excellence in IDD Journalism Award for this ongoing series.
Amanda is a 53-year-old woman with a mild intellectual disability who is an effective communicator, expressively and receptively. She has obtained employment through a local program facilitating light custodial work at a nearby business. Amanda has medical diagnoses of diabetes (type 2), gastroesophageal reflux disease, and hypertension. She also has psychiatric diagnoses of bipolar, schizophrenia, and depression.
Amanda has a long history of psychobehavioral concerns that have included running away from her home, cutting herself with small objects (e.g., paperclips), stealing food or drinks, and making repetitive medical complaints. These repetitive medical complaints have been general at times, such as, “I don’t feel good,” but she is unable to clearly identify an area of discomfort or symptom. She also has incidents when she has “faked seizures,” but she has no history of seizures, does not take seizure medications, and no seizure activity has been noted in the ten-plus years she has lived at her current residence.
“It is essential for behavior analysts, physicians, and any service providers not to fall into the trap of “Oh, they’re just doing that for attention!” particularly when it is related to medical complaints.”
Over the last week, Amanda has been making increased medical complaints, such as, “My stomach and head hurt.” Staff have provided continual support for her complaints by offering PRN medications for her more specific needs, as well as taking her to the doctor to be tested for the flu and COVID-19. She continues to make generalized medical complaints to staff, in addition to noting that she is more lethargic, stealing others’ drinks, and one instance of an odd (for her) behavior of having a urinary toileting accident.
Medical Discussion
Clinicians are often concerned about the validity of a medical complaint from a person with an intellectual or developmental disability (IDD). We frequently disregard the perspective of the person with IDD altogether and speak only to their supporter or family member as if they were not there. There is already a bias against the person’s story. Clinicians must assume competence when speaking to a person with IDD and utilize supporters to provide additional information as needed.
Often, clinicians will attribute complaints and symptoms to a person’s overall diagnosis of intellectual disability or mental health diagnosis. This is called “diagnostic overshadowing.” In a situation such as this one, we must be careful not to say, “Well, that’s just what people with IDD sometimes do,” or we may miss something significant.
From a medical standpoint, a person with frequent vague and general complaints can be challenging. However, even if it is known that a person utilizes health complaints to gain attention from others, there still can be a real, underlying medical cause for the complaints, and each one should be evaluated. A battery of lab tests and radiology exams may not be warranted each time, but a review of the person’s current medical problems and health status should be pursued.
There are many health conditions that we often miss in people with IDD, and a person can go on needlessly suffering or may even die when this occurs. It’s worth giving each complaint the attention needed to rule out significant and treatable underlying medical problems.
Behavioral Discussion
It is common to hear a person making frequent medical complaints as a behavior analyst. The reasons for this are seemingly as endless as the type of medical complaints we all hear as service providers! The people we work with have comorbidities, difficulty communicating pain or discomfort, and may have chronic and acute medical concerns that lead to recurrent needs. These are all perfect recipes for needing ongoing and repeated healthcare support.
From a strictly behavioral standpoint, repeated medical complaints can be a learned behavior that is more efficient in accessing desired reinforcement, such as attention, items, or activities. In environments with greater competition for staff attention (e.g., group homes), making medical complaints can effectively gain staff attention. In many places, making medical complaints that result in access to PRN medications inherently means more attention in the short-term and more attention in the future, as staff will have to return in the future (e.g., one hour) to check on the status of their symptoms. If the function of repeated medical complaints is access to attention, this can be an incredibly efficient learned behavior.
There is also the dynamic that some individuals have developed a generalized means of communicating their wants and needs. For example, a person may learn the American Sign Language sign for “nurse” but has learned to generalize this sign to mean, “I need something.” This can lead to a misunderstanding of what the person is actually seeking.
Outcome
It is essential for behavior analysts, physicians, and any service providers not to fall into the trap of “Oh, they’re just doing that for attention!” particularly when it is related to medical complaints. Amanda’s ongoing medical complaints, which have been behavioral in nature in the past, were valid in this circumstance. Amanda and her healthcare team have long worked to manage her diabetes effectively, and after a sustained period of stability, decided to make a change to her diabetes medication. In the days after the change, Amanda’s blood sugar readings increased markedly, and she experienced behavioral changes due to the symptoms of high blood sugar. For Amanda, this was increased thirst (e.g., stealing drinks), increased urination (e.g., urinating on herself), and general malaise.
About 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 works closely with national organizations such as the National Down Syndrome Society and the National Task Group on Intellectual Disabilities and Dementia Practices and is the Founder/CEO of Crescent Behavioral Health Services based in Columbia, SC. out
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 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.
