Use a systematic diagnostic formulation
Develop a diagnostic formulation (eg, HELP) that considers causes sequentially and systematically, such as the following50:
Health: Assess for possible physical health problems, (see Physical Health guidelines for head-to-toe sequence of common medical concerns), pain, and adverse and other side effects of medications.
Environment: Facilitate “enabling environments” that meet these unique developmental needs and can diminish or eliminate behaviours that challenge (BTC). Work with an interprofessional team and caregivers to address problematic environmental circumstances (see A Person-centered Approach to Care, Effective Communication, Psychosocial Context and Mental Well-being).73 Ascertain whether existing supports match needs (see Cognitive Ability and Adaptive Functioning).258
Plan for a functional behavioural assessment by a behavioural therapist or psychologist.
Life experiences: Screen for distressing life experiences that might be contributing to BTC (see Life Transitions).72, 252, 259, 260
Psychiatric conditions: Having attended to the above, consider psychiatric conditions (eg, adjustment difficulties, mood and anxiety concerns). Refer as needed for assessment to an interprofessional mental health team (see Interprofessional Health Care Teams).48, 72, 252, 261, 262
Expert Expert Experiential
Behaviours that challenge (BTC) (eg, self-injury, aggression, outbursts of anger, and irritability) are not psychiatric disorders; BTC often communicate underlying distress, sometimes from multiple causes.72, 73, 252
BTC sometimes occur owing to an absence of necessary environmental accommodations, insufficient supports (eg, inappropriate expectations and environments that are stressful, unresponsive, understimulating oroverstimulating, noisy, restrictive, or intrusive, or that lack privacy), and a lack of adaptations for coexisting disabilities such as cerebral palsy and hearing and vision impairments.
An “enabling environment” exists when an individual’s developmental needs match their supports.73
BTC might be a symptom of psychiatric illness. A systematic diagnostic formulation, such as HELP, will identify whether BTC that appear “psychiatric” might be due to one or more other causes.72, 257
Review psychotropic medications regularly
Review regularly (eg, every 3 mo) the rationale and use of prescribed psychotropic medications, including those used as needed.263, 265-268 (See Mental Health Intervention, Psychological Therapies for psychotropic prescribing practices for psychiatric disorders.
Despite the evidence of non-benefit and concerns regarding potential harm, psychotropic medications are often used to manage BTC.263, 264
Use psychotropic medications for behaviours that challenge as a last resort
Use psychotropic medication to manage BTC of people with IDD only as a last resort and for a short term to attend to risk of harm while ascertaining causes.72, 263
Efforts should focus on the need to adequately assess the cause of BTC rather than solely using medication to suppress them.
Consider tapering or stopping psychotropic medications
Consider tapering and stopping, at least on a trial basis, long-term psychotropic medications not prescribed for a specific psychiatric diagnosis.266, 268 Refer and work with an interprofessional mental health team for this purpose.266, 268, 271
For some people with IDD, additional supports might first have to be provided for successful discontinuation of medications.269-271
Avoid psychotropic medications as first-line treatment
Do not use antipsychotic medications as a first-line or routine treatment of BTC.268-270
Empirical Ecosystem Expert
Antipsychotic medications are often inappropriately prescribed for adults with BTC and IDD in the absence of a robust diagnosis of a psychotic disorder.269, 272
Risk assessment tool
The Risk assessment tool for adults with developmental disabilities in behavioural crisis, developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), helps primary care providers assisting people with intellectual and developmental disabilities in a behavioural crisis to identify risk factors for self-harm or harm to others or the environment and possible protective factors.
Auditing psychotropic medication therapy
The Auditing psychotropic medication therapy, was developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011).It is intended to help primary care providers audit psychotropic medication use by their patients with intellectual and developmental disabilities and promote best practice guidelines for this population.
Learn how to implement these guideline recommendations into your practice from selected articles in the special issue on primary care of adults with intellectual and developmental disabilities in Canadian Family Physician, Vol 64 (suppl 2): S1-78, April 2018:
HELP for behaviours that challenge in adults with intellectual and developmental disabilities
48. Charlot LR. Chapter 132: Multidisciplinary assessment. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health care for people with intellectual and developmental disabilities across the lifespan. Rubin and Crocker 3rd ed. Springer; 2016. p. 1677-98.
50. Bradley E, Korossy M. HELP with behaviours that challenge. Journal on Developmental Disabilities. 2016;22(2):101-20.
72. National Institute for Health and Care Excellence – NICE. Challenging behaviour and learning disabilities: Prevention and interventions for people with learning disabilities whose behaviour challenges. NICE guidelines [NG 11]. London, UK: NICE National Institute for Health and Care Excellence; 2015.
73. Banks R, Bush A, Other Contributors. Challenging behaviour: A unified approach – update: Clinical and service guidelines for supporting children, young people and adults with intellectual disabilities who are at risk of receiving abusive or restrictive practices. London, UK: The Royal College of Psychiatrists; 2016 April.
252. National Institute for Health and Care Excellence – NICE. Mental health problems in people with learning disabilities: Prevention, assessment and management – methods, evidence and recommendations: Final version. UK: The British Psychological Society and The Royal College of Psychiatrists; 2016 September.
253. Zeedyk SM, Rodriguez G, Tipton LA, Baker BL, Blacher J. Bullying of youth with autism spectrum disorder, intellectual disability, or typical development: Victim and parent perspectives. Research in Autism Spectrum Disorders. 2014;8(9):1173-83.
254. Larkin P, Jahoda A, MacMahon K, Pert C. Interpersonal sources of conflict in young people with and without mild to moderate intellectual disabilities at transition from adolescence to adulthood. Journal of Applied Research in Intellectual Disabilities. 2012;25(1):29-38.
255. Hermans H, Evenhuis HM. Life events and their associations with depression and anxiety in older people with intellectual disabilities: Results of the HA-ID study. J Affect Disord. 2012;138(1-2):79-85.
256. Wigham S, Hatton C, Taylor JL. The effects of traumatizing life events on people with intellectual disabilities: A systematic review. Journal of Mental Health Research in Intellectual Disabilities. 2011;4(1):19-39.
257. Holland A. Chapter 1: Disorders of intellectual development: Historical, conceptual, epidemiological and nosological overview. In: Woodbury-Smith M, editor. Clinical topics in disorders of intellectual development. London, UK: Royal College of Psychiatrists Publications; 2015. p. 3-21.
258. Bradley E, Behavioural and Mental Health Working Group of the Developmental Disabilities Primary Care Initiative. Guide to understanding behavioural problems and emotional concerns in adults with developmental disabilities (DD) for primary care providers and caregivers. In: Sullivan W, Developmental Disabilities Primary Care Initiative, editors. Tools for the primary care of people with developmental disabilities. Toronto: Surrey Place & MUMS Guidelines Clearing House; 2011. p. 67-75.
259. Levitas AS, Gilson SF. Predictable crises in the lives of people with mental retardation. Mental Health Aspects of Developmental Disabilities. 2001;4(3):89-100.
260. Bradley E, The Baroness Hollins S, Korossy M, Levitas A. Chapter 10: Adjustment disorder in disorders of intellectual development. In: Casey P, editor. Adjustment disorders: from controversy to clinical practice. Oxford University Press; 2018. p. 141-72.
261. Bradley EA, Goody R, McMillan S. A to Z of disciplines that may contribute to the multi- and interdisciplinary work as applied to mood and anxiety disorders. In: Hassiotis A, Barron DA, Hall I, editors. Intellectual disability psychiatry: a practical handbook. Chichester, England: Wiley-Blackwell; 2009. p. 257-63.
262. Buckles J, Luckasson R, Keefe E. A systematic review of the prevalence of psychiatric disorders in adults with intellectual disability, 2003-2010. Journal of Mental Health Research in Intellectual Disabilities. 2013;6(3):181-207.
263. Alexander RT, Branford D, Devapriam J. Psychotropic drug prescribing for people with intellectual disability, mental health problems and/or behaviours that challenge: Practice guidelines. London, UK: The Royal College of Psychiatrist; 2016 April.
264. Sheehan R, Hassiotis A, Walters K, Osborn D, Strydom A, Horsfall L. Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ. 2015;351:h4326.
265. Bradley E, Behavioural and Mental Health Working Group of the Developmental Disabilities Primary Care Initiative. Auditing psychotropic medication therapy. In: Scientific and Editorial Staff, Developmental Disabilities Primary Care Initiative, editor. Tools for the primary care of people with developmental disabilities. Toronto: Surrey Place; 2011. p. 88-9.
266. Branford D, Bhaumik S. Chapter 12: Aggressive behaviour. In: Bhaumik S, Branford D, Barrett M, Gangadharan SK, editors. The Frith prescribing guidelines for people with intellectual disability. 3rd ed. Chichester, West Sussex ; Hoboken, NJ: John Wiley & Sons Inc.; 2015. p. 147-52.
267. Branford D, Bhaumik S. Chapter 3: Physical and health monitoring. In: Bhaumik S, Branford D, Barret M, editors. The Frith prescribing guidelines for adults with learning disability. 3rd ed. Wiley; 2015. p. 21-30.
268. Deb S, Kwok H, Bertelli M, Salvador-Carull L, Bradley E, Torr J, et al. International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry. 2009;8(3):181-6.
269. Glover G, Williams R, Branford D, Avery R, Chauhan U, Hoghton M, et al. Prescribing of psychotropic drugs to people with learning disabilities and/or autism by general practitioners in england. London, UK: Public Health England (PHE) and Clinical Practice Research Datalink (CPRG); 2015.
270. Tyrer P, Oliver-Africano PC, Ahmed Z, Bouras N, Cooray S, Deb S, et al. Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: A randomised controlled trial. Lancet. 2008;371(9606):57-63.
271. Sheehan R, Hassiotis A. Reduction or discontinuation of antipsychotics for challenging behaviour in adults with intellectual disability: A systematic review. Lancet Psychiatry. 2016.
272. Lunsky Y, Khuu W, Tadrous M, Vigod S, Cobigo V, Gomes T. Antipsychotic use with and without comorbid psychiatric diagnosis among adults with intellectual and developmental disabilities. Can J Psychiatry. 2017:706743717727240.
309. Glover G., Bernard S., Branford D., Holland A., Strydom A. Use of medication for challenging behaviour in people with intellectual disability. British Journal of Psychiatry. 2014;205(1):6-7.</