Positive Approaches Journal, Volume 9, Issue 2

Volume 9 ► Issue 2 ► 2020

Behavior Change in Individuals with Intellectual/Developmental Disability

Julie P. Gentile, M.D.

Introduction

Individuals with intellectual disabilities (IDD) often have limited expressive language skills and may communicate critical information to those around them through their behavior. Intellectual disability is characterized by limitations in both intellectual function and adaptive behavior, which may include practical and social skills. A comprehensive assessment should be performed to determine the etiology of the disability and the appropriate services to support the individual.¹ As Sigmund Freud stated, “All behavior is purposeful.” It is the job of clinicians, caregivers and family members to determine the etiology of behavior. A change in behavior may indicate a medical condition, a psychiatric illness, medication intolerance, or a host of other issues. It is the critical detective work that we perform that will reveal the etiology of behavior change. Behavior is not a problem; it is a form of communication. Literature shows that behavior change in ID often indicates medical or mental health conditions; it is vital that we facilitate timely identification of accurate diagnoses and treatment for same.² Despite advances in preventive and medical care, age at death remains lower and mortality rates higher for persons with ID.¹ Older adults with IDD carry a higher mortality risk relative to the general population, mainly attributable to respiratory, central nervous, and circulatory systems.

Assessment: The Biopsychosocial-Developmental Model

The biopsychosocial model is useful when attempting to determine the etiology of behavior change in a person with IDD.¹ It is important to gather information from the individual, family, caregivers, clinical records, and collaborating agencies. The assessment can evolve over time and incorporates supporting, predisposing, perpetuating, and protective factors related to the disorder. In the assessment of behavior change in an individual with IDD, it is important to provide an environment most likely to de-escalate the situation. Use a calm, soothing tone, express concern, offer food or drink, allow trusted persons to be present when able, remove potentially dangerous objects and distract with positive activities. Avoid overcrowding individuals or exposing them to loud noises, addressing only the caregiver, concealing hands in pockets, using intimidating direct eye contact or a confrontational stance, and unnecessarily invading personal space. It is important to talk both directly to the individual and to obtain collateral information from others present.³ Care in the approach to the situation can help the provider obtain accurate and complete information for the assessment.

Biological Component

The biological aspects of the assessment will include information such as demographics, medical history, genetics, family history, medication trials, and substance use.⁴ Especially important is a medication timeline and a medication history that includes medications the individual was taking at a time when he or she was doing well. Ask questions about when the individual was most recently doing well and collect as many details of that point of reference. We must know what the highest level of functioning is and how to achieve that in the present. The timeline of medication trials is important, as individuals with IDD are more susceptible to medication side effects. It is also important to remember that externalized behavior may be a way for an individual to communicate about a current medical illness, so documentation by caretaking staff can be helpful to determine an underlying biological cause of the aggressive behavior.⁵

Psychological Component

Family history of violence, whether potentially genetically influenced or a learned behavior, is a predisposing factor, as individuals who experience violence regularly at a young age are more likely to be aggressive. Psychological data obtained should also include trauma history, information regarding developmental years, losses and significant transitions, environmental changes, past counseling relationships, and an individual’s coping skills.

Social Component

Social outlets are important for persons with IDD, and it is imperative they feel safe in their environments. Data should be gathered about residential placements, social activities, hobbies and interests, spirituality, spending money, exercise and activity, and feelings of safety.

Developmental Component

Individuals with IDD will usually present within the context of the developmental stage in which they live.^1,6 IDD is categorized as profound/severe, moderate, or mild, which is often an indicator of the level of dependency needs and expressive language capability of the individual. Generally, individuals with mild cognitive deficits live in the community in supported residential situations and participate in life-long supported employment or programming. Persons in the moderate category will most often need varying levels of support from their families or community agencies. Because their expressive language skills are typically more limited, they are at higher risk for inability to communicate subjective complaints using speech about mental health and medical illnesses.¹ Individuals with severe/profound IDD are more likely to have very high levels of dependence on external supports and to have associated medical conditions, with most individuals requiring assistance for all aspects of life. Significant medical complications, such as seizure disorders, swallowing difficulties, speech impairments, and reduced life expectancies are more common for persons in the profound impairment category.

Obtaining the history

Conclusion

Individuals with IDD are at a significantly higher risk of having comorbid medical, genetic, and psychiatric conditions that in turn place them at greater risk for medical conditions involving every organ system. Individuals with IDD are less likely to be afforded access to traditional preventative guidelines and treatment methods. The barriers to treatment must be overcome. It is well documented that neurotypical individuals with severe and chronic psychiatric illnesses have greatly reduced life expectancy. Since many individuals with communication deficits exhibit behavioral changes or acute psychiatric symptoms when experiencing medical conditions, the mental health clinician often plays a vital role in facilitating access to appropriate care.