L. Jarrett Barnhill, MD, DFAPA, FAACAP; Lauren R. Charlot, PhD, LICSW; Dan Baker, PhD; Joan B. Beasley, PhD
Overview
Studies suggest that 30-40% of people with intellectual and developmental disabilities (IDD) experience mental health disorders.1 The true prevalence may be an underestimate due to under-diagnosis and misdiagnosis of underlying medical/neurological disorders as mental health conditions.2
There are several key factors that need to be considered in the psychiatric assessment process:3-6
- Level of intellectual disability
- Provides some framework to understand the patient’s needs
- Overreliance on IQ score and level of ID may undermine diagnosis and treatment as they may not accurately portray the patient’s capacity to communicate or benefit from treatment
- How a person communicates
- Ecological and psychosocial vulnerabilities
- Diagnostic overshadowing (e.g., pain and discomfort may present as externalizing, disruptive behaviors that can be misattributed to a psychiatric condition)
Assessment teams should adopt adaptive and holistic approaches that include:4-5,7
- Direct communication with the patient: Consider their communication style and preferences (including differences between receptive and expressive language)
- Use of assessment tools designed for people with IDD whenever possible
- A detailed biopsychosocial history
- A mental status examination
- Systematic evaluation of medical, psychological, and genetic issues
- Observational data from the patient, family, and care providers
- A holistic-transactional mindset to look beyond simply treating an illness: Behavioral and psychiatric disorders represent evolving conditions that are profoundly influenced by ongoing transactions between biology and the environmental/social context.
- Recognition of resilience and positive psychological forces to promote wellness and maximize adaptive skills.8,9
Initial Psychiatric Assessment
Given the challenges inherent in assessing psychiatric symptoms in people with intellectual and developmental disabilities (IDD), including communication barriers, limited insight, or fluctuating presentation, clinicians benefit from structured tools to guide both diagnosis and monitoring. The following instruments have been validated or adapted for use with people with IDD and can supplement, though not replace, direct patient interviewing.1,10
Table 1: Mental Health Assessment Tools for People with IDD
| Assessment Tool | Description |
|---|---|
| DMID21 | Companion guide to the DSM developed for the diagnosis of mental disorders in people with IDD. |
| Symptom Monitoring Checklist | Monitor vegetative signs and symptoms when unable to rely on the accuracy of the self-reporter or informant. |
| The Glasgow Mental Health Screeners11 | Self-report measures of mental health symptoms (e.g., anxiety, depression, psychosis) for people with IDD. |
| Anxiety Depression and Mood Scale (ADAMS)12 | A 28-item questionnaire that screens for psychiatric disorders in people with intellectual disabilities. Items are scored based on how they interfere with daily life. |
| Moss Psychiatric Assessment Schedules (ID)13 | Used to collect symptom information directly from an informant via a semi-structured interview procedure or can be completed based on knowledge already possessed about the person. |
Components of Comprehensive Psychiatric Assessment for Patients with IDD
Several developmental, biological, and psychosocial factors might influence altered mental status. These should be considered as part of regular assessment for patients with IDD.
Table 2: Components of Comprehensive Psychiatric Assessments for Patients with IDD1,10
| Component | Description |
|---|---|
| Medical Concerns | As many as 40% of people with IDD referred for an inpatient psychiatric stay have a missed or under-treated medical problem that was the actual reason for challenging behaviors that led to the admission. |
| Syndromes Associated with IDD | Several syndromes, primarily genetically mediated, may cause the occurrence of an IDD and contribute to patterns of executive function deficits, increased risk for certain medical comorbidity, and even elevated risk for psychiatric symptoms and syndromes. |
| Psychosocial and Systemic Vulnerabilities | Vulnerabilities include challenges related to cognitive factors and information processing including executive functions, communication (especially functional and social-emotional communication), sensory sensitivities, restricted and repetitive behaviors, trauma histories, residential and programmatic services. As suggested, such vulnerabilities may provoke problems or impact the shape they take. Intersectionality in the form of culture and disability is a significant consideration as well. |
| Cognition/ Level of Intellectual Disability | It can be helpful to know a person’s ID designation and their patterns of skill areas, however, there is extreme variability within these characterizations in how people process information, communicate, remember things, problem solve, and plan. These differences impact what is experienced as stressful, the degree of stress experienced, and how a person responds. Coping skills are important to know as well. |
| Executive Function (EF) | The term executive function is used to describe a set of cognitive functions that control and regulate other abilities and behavior. This includes planning, organizing, focusing, paying attention, and problem solving. Patients with lived experience in IDD tend to benefit from support with initiating activities, communicating, coping, paying attention, finishing tasks, tolerating frustration, and regulating emotions, which impacts the ways the person navigates everyday life. |
| Communication | People with IDD present with a very wide range of abilities and challenges about communication, both expressive and receptive. It is critical to help caregivers understand that speaking is different from problem solving and planning. Many people with IDD learn “scripts” but may not have insight into the meaning. |
| Sensory Sensitivities | Sensory sensitivities may occur in conjunction with a tendency to be easily over aroused or under aroused. Sensitivities to sounds are most common, but also to space (being too close), light touch, clothing tags on the skin, and to overly visually busy environments are other examples.14,15 |
| Repetitive behaviors | Perseveration and repetitive tendencies are common concerns for many with IDD. In some cases, especially ASD, there is a deep need for things to remain the same, and increased stress when they change. Repetition can be a way to cope, manage arousal, understand something better, to resist change, which is upsetting, and at times just for enjoyment (having a self-stimulatory aspect). If a repetitive behavior is aimed at stress or anxiety reduction, a replacement must be provided if it is to be eliminated. |
Thinking Beyond Pharmacologic Interventions16-18
Psychopharmacological assessments are frequently reductionistic and limit consideration of the psychosocial and ecological forces that influence the emergence and course of psychiatric disorders. All too often, the efficacy of medication is overestimated; psychotropics are not solutions. While medications may be a piece to the wellness puzzle, it is not the only one. Medications do not take the place of primary care, educators, therapists, friends, or family members but are an intervention designed to alter the underlying biology of behavior.
Conclusion
Assessment is the most important part of any treatment program. It needs to provide a comprehensive picture of a person’s symptoms in a biopsychosocial context and work towards holistic solutions to adverse life experiences. Assessment should consider culture issues and the person’s experience with receiving support. The goals of assessment are to identify and develop strategies and interventions to help the person make gains in their life.
References
- Fletcher RJ, Barnhill J, Cooper SA, eds. Diagnostic Manual–Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability. Kingston, NY: NADD Press; 2017.
- Crocker AG, Prokić A, Morin D, Reyes A. Intellectual disability and co-occurring mental health and physical disorders in aggressive behaviour. J Intellect Disabil Res. 2014;58(11):1032–1044.
- Gardner W, Whalen J. Discussion: A multimodal analytic model for evaluating the effects of medical problems on nonspecific behavioral symptoms in persons with developmental disabilities. Behav Intervent. 1996; 11:147–161.
- Baker DJ, Blumburg ER. Mental Health and Wellness Supports in Youth with IDD. Kingston, NY: NADD; 2013.
- Price U, Baker DJ. The Good Stuff: Practical Positive Supports for People with Intellectual and Developmental Disabilities and Mental Illness. Kingston, NY: NADD Press; 2023.
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- Aguayo P, Lin AG, Stevens PT, Carbone PS, Bilder DA, Rapaport MH. A patient-centered multidisciplinary medical HOME for persons with intellectual and developmental disabilities. Focus (Am Psychiatr Publ). 2024;22(2):170–174. doi: 10.1176/appi.focus.20230036. PMID:38680975; PMCID: PMC11046720.
- Anderson J, Wickham S. Perspectives on delivering health promotion for the intellectual disability population. Br J Nurs (Mark Allen Publ). 2022;31(12):640–646. doi:10.12968/bjon.2022.31.12.640.
- Ervin DA, Hennen B, Merrick J, Morad M. Healthcare for persons with intellectual and developmental disability in the community. Front Public Health. 2014; 2:83. doi:10.3389/fpubh.2014.00083. PMID: 25077139; PMCID: PMC4098023.
- American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington, DC: American Psychiatric Association; 2013.
- Cooper SA, Smiley E, Morrison J, Williamson A, Allan L, Marsay A, et al. The Glasgow Mental Health Screeners for adults with intellectual disabilities: development and validation. J Intellect Disabil Res. 2007;51(Pt 3):187–195. doi:10.1111/j.1365-2788.2006.00903.x.
- Esbensen AJ, Rojahn J, Aman MG, Ruedrich S. Reliability and validity of an assessment instrument for anxiety, depression, and mood among individuals with mental retardation. J Autism Dev Disord. 2003; 33:617–629.
- Moss S, Emerson E, Kiernan C, et al. Psychiatric symptoms in adults with learning disability and challenging behaviour. Br J Psychiatry. 2000; 177:452–456.
- Ben-Sasson A, Hen L, Fluss R, Cermak SA, Engel-Yeger B, Gal E. A meta-analysis of sensory modulation symptoms in individuals with autism spectrum disorders. J Autism Dev Disord. 2009;39(1):1–11.
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- Matson JL, Neal D. Psychotropic medication use for challenging behaviors in persons with intellectual disabilities: an overview. Res Dev Disabil. 2009; 30:572–586.
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- Spencer D, Marshall J, Post B, Kulakodlu M, et al. Psychotropic medication use and polypharmacy in children with autism spectrum disorders. Pediatrics. 2013;132(5):833–840.
