Curbside Consultation

Evaluation of Behavior Change in Patients with Developmental Disabilities

 

Am Fam Physician. 2016 Apr 15;93(8):686-692.

Case Scenario

A mother brought her 19-year-old nonverbal, autistic son to our clinic. She requested medication for him to reduce the number of episodes that include loud vocalizations, thrashing, and head banging. These episodes usually occur in the car. At baseline, the man has difficulty with movement, characterized by decreased fine-motor control, impulsivity, and sudden darting away. His vision and hearing are normal. He often becomes overstimulated in busy environments. He has a partial complex seizure disorder for which he takes lamotrigine (Lamictal). How can I help this family?

Commentary

When addressing problem behaviors in patients with developmental disabilities, it is critical to understand the underlying reason for their manifestation, particularly if there is a change from baseline behavior or function, and medical causes should always be considered first. The physician's approach should emphasize physical, psychological, and emotional safety for both the patient and his supporter or caregiver, and help the patient build a sense of control and empowerment. Coercion, isolation, restraining measures, harsh or devaluing words, labeling, and focusing on what is “wrong” with the person can be harmful or trigger past trauma. These methods should be avoided by physicians and caregivers or supporters.1,2

INITIAL APPROACH

The physician should begin by clarifying the presenting circumstances using the following questions.

How Does the Patient Communicate Best? The first step is to communicate directly with the patient about his concerns. With the patient's permission, information about the reason for the visit may also come from other persons. However, supporters and caregivers may not recognize all of the relevant signs or symptoms and may not have accurate information.

Being nonverbal is not the same as having nothing to say. Everyone communicates, but that capacity is often overlooked in persons with limited speech, dysmorphic features, or cognitive disabilities. Some persons will communicate best through methods such as writing, typing, pointing to picture icons or letters, sign language, gestures, facial expressions, demonstrations, leading by the hand, sounds, physical signs, or behaviors. For example, behaviors such as darting off, self-injury, or aggression can be a way to communicate distress. However, behaviors that are the result of adaptive, impulsive, or involuntary movements rather than attempts to communicate can be misinterpreted.

Patients often come to appointments with supporters who, like interpreters and cultural brokers, can assist with communication. Information and videos that model how to work effectively with supporters can be found at http://odpc.ucsf.edu/supported-health-care-decision-making. Physicians can encourage patients to complete a personalized accommodations report (http://www.autismandhealth.org/) or health passport (http://odpc.ucsf.edu/sites/odpc.ucsf.edu/files/pdf_docs/FCIC_Health_Passport_Form_Typeable_English.pdf), which can help others understand the patient's needs. Some persons with disabilities can complete these documents independently. Others can complete them with the assistance of a trusted supporter.

Physicians can make simple accommodations such as turning off fluorescent lights, maintaining a scent-free office, allowing extra time for the visit, or using plain language and anatomy pictures or models. These can make a big difference in a patient's ability to participate in his or her own care. Other tips and strategies for working with nontraditional communicators can be found on the website of the University of California, San Francisco's Office of Developmental Primary Care (http://odpc.ucsf.edu).3,4

Is the Behavior a Change from the Patient's Baseline? If the behavior is new, it may be the result of a medical condition or an environmental change. If the behavior is not a change from baseline, it may simply be calming, adaptive, or developmentally appropriate for the patient.

Has the Caregiver's Situation Changed? Sometimes a patient's behaviors are not new, but instead there has been a change in the caregiver's ability to cope. In this case scenario, the son's vocalizations and thrashing may have been manageable until the mother started a carpool or developed migraines.

MEDICAL EVALUATION

Undiagnosed or undertreated medical problems often cause changes in behavior. Simple problems such as constipation or rashes can be very distressing. Sensory processing and communication differences may make it challenging for a patient with disabilities to localize or describe his or her distress. Common medical problems that contribute to behavior change are listed in Table 1.5,6 Physicians should perform a comprehensive physical examination and review of systems, as well as consider a urinalysis and basic metabolic panel. Common problems can also present in unusual ways. For example, hearing changes that result from a buildup of earwax can cause head banging, or reflux can present as insomnia. Patients with disabilities may also not exhibit typical pain behavior, such as moaning, grimacing, and touching the part that hurts.6

Nonmedical causes of behavior change should also be considered (Table 2).

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Table 1.

Common Medical Causes of Behavior Change in Persons with Developmental and Intellectual Disabilities

Cervical spine problems

Constipation

Dementia

Dental pain

Dysphagia

Gastroesophageal reflux

Joint, tendon, or ligament injuries

Kidney stones

Medication adverse effects

Migraines

Occult fractures

Psychiatric disability

Seizures

Thyroid problems

Trauma, including posttraumatic stress

Unrecognized pain or discomfort

Urinary or biliary obstruction

Urinary tract infection


Information from references 5 and 6.

Table 1.

Common Medical Causes of Behavior Change in Persons with Developmental and Intellectual Disabilities

Cervical spine problems

Constipation

Dementia

Dental pain

Dysphagia

Gastroesophageal reflux

Joint, tendon, or ligament injuries

Kidney stones

Medication adverse effects

Migraines

Occult fractures

Psychiatric disability

Seizures

Thyroid problems

Trauma, including posttraumatic stress

Unrecognized pain or discomfort

Urinary or biliary obstruction

Urinary tract infection


Information from references 5 and 6.

 Enlarge     Print

Table 2.

Common Nonmedical Causes of Behavior Change in Persons with Developmental and Intellectual Disabilities

Abuse or other stressors

Boredom that leads to anxiety

Escape from or avoidance of demands

Increase in arousal or self-stimulation

Means of accessing preferred activity or objects

Pursuit of power and control

Sensory problem (e.g., hearing, vision, sensory integration)

Substance abuse

Unmet need for social attention

Table 2.

Common Nonmedical Causes of Behavior Change in Persons with Developmental and Intellectual Disabilities

Abuse or other stressors

Boredom that leads to anxiety

Escape from or avoidance of demands

Increase in arousal or self-stimulation

Means of accessing preferred activity or objects

Pursuit of power and control

Sensory problem (e.g., hearing, vision, sensory integration)

Substance abuse

Unmet need for social attention

TREATMENT APPROACH

The goal of treatment is to address the cause of behaviors rather than to suppress them in the context of an untenable situation. When discussing these issues, the physician should assume the patient is capable of understanding and participating in his own care, with or without support and accommodation. The physician should also model positive, respectful communication. These attitudes decrease the anxiety persons with disabilities often have as a result of being underestimated, misunderstood, or misrepresented.

Behaviors that are not harmful should be accepted and accommodated. If the predominant reason for the visit is caregiver stress, that can be addressed with additional respite, education, referrals to service agencies, social support, mindfulness classes, or assistance with practical problem solving.7 Medical treatment should target any identified, remediable medical conditions that may be interfering with the patient's ability to participate fully in his environment. Further treatment should help the patient and caregiver manage nonmedical conditions.

If the cause of the behavior cannot be determined, changing the patient's social, physical, or sensory environment can often resolve the issue. In the case presented, the patient may be having an unrecognized sensory problem in the car, such as sensitivity to bright sunlight. Additionally, fear of being exposed to a seizure trigger, such as the strobe-like flashes that occur when driving past evenly spaced poles, can make car rides stressful for some. Caregivers and supporters should be advised to experiment with their routine, perhaps by putting up window shields, trying another driver, reducing the number of passengers in the car, or playing favored music.8

THE ROLE OF MEDICATION

Problem behaviors alone, such as aggression or self-injury, are not grounds for a psychiatric diagnosis. However, mental health problems are common in persons with developmental disabilities. With consent and appropriate diagnosis, medical treatment for psychiatric disability can be effective. The National Association for the Dually Diagnosed (http://thenadd.org) has developed an adaptation of the Diagnostic and Statistical Manual of Mental Disorders specifically for patients with intellectual disability.9 According to Canadian consensus guidelines, patients with developmental disabilities who do not have a diagnosed psychotic illness should not be treated for difficult behavior with antipsychotic medications.10,11

Address correspondence to Clarissa Kripke, MD, FAAFP, at clarissa.kripke@ucsf.edu. Reprints are not available from the author.

Author disclosure: No relevant financial affiliations.

REFERENCES

show all references

1. Georgia Department of Behavioral Health and Developmental Disabilities. Guidelines for supporting adults with challenging behaviors in community settings, 2005. http://www.nasddds.org/uploads/documents/GA_GuidelinesSupportingAdultsChallengingBehaviors.pdf. Accessed September 15, 2015....

2. Keesler JM. A call for the integration of trauma-informed care among intellectual and developmental disability organizations. J Policy Pract Intellect Disabil. 2014;11(1):34–42.

3. Nicolaidis C, Raymaker DM, Ashkenazy E, et al. “Respect the way I need to communicate with you”: healthcare experiences of adults on the autism spectrum. Autism. 2015;19(7):824–831.

4. Surrey Place Centre. Vanderbilt Kennedy Center. Health care for adults with intellectual and developmental disabilities: toolkit for primary care providers. http://vkc.mc.vanderbilt.edu/etoolkit/. Accessed September 15, 2015.

5. de Winter CF, Jansen AA, Evenhuis HM. Physical conditions and challenging behaviour in people with intellectual disability: a systematic review. J Intellect Disabil Res. 2011;55(7):675–698.

6. Charlot L, Abend S, Ravin P, Mastis K, Hunt A, Deutsch C. Non-psychiatric health problems among psychiatric inpatients with intellectual disabilities. J Intellect Disabil Res. 2011;55(2):199–209.

7. Reid C, Gill F, Gore N, Brady S. New ways of seeing and being: evaluating an acceptance and mindfulness group for parents of young people with intellectual disabilities who display challenging behaviour. J Intellect Disabil. 2016;20(1):5–17.

8. Nicolaidis C, Kripke CC, Raymaker D. Primary care for adults on the autism spectrum. Med Clin North Am. 2014;98(5):1169–1191.

9. Fletcher R, Loschen E, Stavrakaki C, First M, eds. DM-ID: Diagnostic Manual-Intellectual Disability: A Clinical Guide for Diagnosis of Mental Disorders in Persons with Intellectual Disability. Kingston, NY: NADD Press; 2007.

10. Sullivan WF, Berg JM, Bradley E, et al.; Colloquium on Guidelines for the Primary Health Care of Adults with Developmental Disabilites. Primary care of adults with developmental disabilities: Canadian consensus guidelines. Can Fam Physician. 2011;57(5):541–553, e154–e168.

11. Tyrer P, Cooper SA, Hassiotis A. Drug treatments in people with intellectual disability and challenging behaviour. BMJ. 2014;348:g4323.

This series is coordinated by Caroline Wellbery, MD, Associate Deputy Editor.

A collection of Curbside Consultation published in AFP is available at http://www.aafp.org/afp/curbside.

Please send scenarios to Caroline Wellbery, MD, at afpjournal@aafp.org. Materials are edited to retain confidentiality.

 

 

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