Text adapted from "Intellectual and developmental disabilties" in Psychiatry in primary care by Yona Lunsky and Johanna Lake, (CAMH, 2019).
HELP is a systematic approach used with people who have IDD to determine whether behaviours considered to be challenging or problematic (e.g., aggression directed at self or others) reflect an underlying psychiatric disorder or whether they signal distress from other causes (Green et al., 2018).
Assessing the components of HELP—health, environment, life experiences and psychiatric disorders—ensures that potential contributors to the behaviour are not missed, which can lead to an inaccurate psychiatric diagnosis. The primary care IDD guidelines (Sullivan et al., 2018) outline each assessment component, as described in the following sections.
Look for possible physical health problems, including pain and side-effects of medications. Adults with IDD have higher rates of epilepsy, diabetes, thyroid conditions, gastrointestinal illnesses (constipation, GERD), musculoskeletal conditions and skin conditions. They are also more likely to have dental, hearing and vision problems that may go undetected. The annual health check, which is no longer recommended for adults in the general population, is evidence-supported practice for people with IDD because without targeted regular reviews, acute and chronic conditions can develop and worsen. Very often, a change in behaviour in people with IDD is their response to unrecognized pain or physical illness.
Assess the Environment
Consider environmental contributors that may be causing difficulties for your patient. Note whether the patient is receiving too much support (and not enough independence and freedom, which can lead to boredom or frustration) or not enough support in the home, at work or in the broader community. Facilitating enabling environments that are matched to the needs of your patient can reduce behaviours that challenge others, such as aggression or self-injury. Work with an interprofessional team and caregivers to address problematic environmental circumstances and assess whether existing supports match your patient’s current needs.
Assess Life Experiences
Screen for distressing life experiences that might be contributing to the current behaviours. Common distressing experiences include a loss or change in routine, illness or death in the family, bullying or abuse, severe financial distress, loss of employment, graduation from school, or a change in paid caregivers. Because some adults with IDD have a different experience of time than other people, life events that happened some time ago may still be causing significant distress. This can be especially true when the event was not well understood in the first place. Breaking Bad News is an excellent website with resources to help adults with IDD process difficult experiences, such as severe illness or death (see the resources section).
Assess Psychiatric Disorders
Once medical, environmental and psychosocial contributors have been screened for and addressed, consider the presence of a psychiatric disorder. The most common but under-recognized psychiatric disorders in adults with IDD are adjustment, mood and anxiety disorders. Refer patients who have a limited ability to describe their emotional experience with words to an interprofessional mental health team with expertise in IDD.