I. Leslie Rubin, MD, Robert Baldor, MD, & Lauren R. Charlot, PhD, LICSW
| Important Issues | Why This Is Critical | What to Consider |
|---|---|---|
| Before psychotropics are started, there is a need for a comprehensive medical assessment. | Patients with IDD may not report medical symptoms comprehensively. Even well-meaning family members and supporters might underestimate or miss medical causes of challenging behaviors. | Conduct a broader based examination than might be usual for patients without IDD. This means testing for common causes of irritability and aggression. Unexplained outbursts may be due to missed or under treated medical conditions. |
| It is the prescriber’s responsibility to elicit information directly from the patient rather than relying solely on informants. | While informant reports can be valuable, especially when a patient cannot articulate their symptoms or history, they should not replace their voice. Research has demonstrated that informant reports often disagree with the patients’ own reports of what is troubling when the patient cannot explain themselves accurately. | Informants tend to focus on observable, externalizing behaviors and may underreport changes in internal states or subjective complaints, sometimes concluding that the patient has no complaints simply because symptoms are not clearly voiced. |
| Insist on medical records and make sure caregivers know that it is the only way you can provide safe, effective care. | Absent accurate patient self-report, this is another tool to clarify common errors informants may make describing the patient’s medical concerns. | Be aware that other practitioners also often receive minimal historical information at times, so people with IDD may be misdiagnosed while physical discomfort is missed and is the actual cause of altered mood and behavior. |
| People with IDD experience challenges in processing verbal communication and benefit from receiving information in multiple ways. | Be careful not to overestimate the patient’s expressive and receptive communication abilities. | Even if supporters do not think that the etiology of challenging behavior is related to medical issues, a more thorough exam is needed. This might reveal a medically modifiable source of emotional and behavioral challenges. |
| People with IDD are commonly referred for a mental health evaluation secondary to externalizing behaviors (yelling, hitting, self-injury, running, wanting to go to the hospital). Problems like feeling miserable, anxious, and unwell are missed, even by caring people. | This means it is critical to interview the patient and informants in a way that will ensure the physician obtains accurate data. | Ask informants to describe what they saw and heard, rather than providing their own hypotheses. For example, motor restlessness might be termed “mania” when it may be caused by a wide array of underlying problems. Teach informants that externalizing behaviors and negative moods are the final common pathways for distress in people who have few ways to demonstrate this. |
| Supporters may view externalizing behaviors (e.g., irritability) as willful attempts to gain attention, or a means of “escaping” unwanted demands. | It is critical to establish why a person shows an increase in trying to get caregiver’s attention. It may be due to feeling unwell (dizzy, excessively tired, etc.) | People may try to escape tasks/events when they are ill but lack cognitive means to explain why. This is not an act of “noncompliance,” rather than one of not feeling well. |
| Clarifying when, where, and under what conditions challenging behavior, dysphoric mood, sleep disruptions, and alterations in food and fluid intake occur help inform more effective care. | The physician needs tactics to ensure underlying medical irritants are found and not improperly addressed as behavioral or psychiatric in nature. By the time medical irritants are identified, patients can develop a myriad of complications, often from ineffective psychotropics. | Along with asking for clear, observational descriptions, the prescriber might request a timeline that begins from baseline wellness to changes in presentation (medication changes, altered eating, drinking, sleeping, weight, etc.) to understand potential contributing factors. |
| Many people with IDD who have mental health needs are treated with psychotropics, and many with polypharmacy. Recent studies show an extreme increase in reliance on psychotropics to manage mood and behavior that should be treated in other, lower risk ways. | A combination of psychotropic use may be effective if the person responds well to these interventions (decrease distress, improve activity level and mood, and treats a specific syndrome such as depression, anxiety). However, many times psychotropics are added and retained when not helping without the patient being part. | There are common psychotropic side effects that can often be missed. These are outlined in the ADE table. People with IDD have atypical nervous systems and other anomalies and have been found to be at an elevated risk for health problems but also for adverse drug events. At times, patients with IDD have psychotropics increased or added due to negative mood or behavior caused by the drug that is being added or increased. |
