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