Screen for antecedents
Screen for antecedents, life events, and triggers of mental distress. Explore the importance of the event for the person and obtain collateral history.260
Recommended
Expert
People with IDD have increased vulnerability to mental stress compared to those in the general population. Developmental challenges, transitions, greater exposure to adversity and traumatic life events, limited coping skills, and insufficient supports contribute further to this vulnerability. If adjustment issues are not adequately addressed, they might give rise to adjustment disorders, which are diagnosed when a life event or trigger has contributed to the mental distress.260
Plan proactively
Proactively plan with the person with IDD, caregivers, and appropriate services to attend to predictable developmental challenges and stressors and to ensure that the necessary supports will be in place (see Life Transitions and Mental Health Intervention, Psychological therapies).259
Recommended
Expert
People with IDD have increased vulnerability to mental stress compared to those in the general population. Developmental challenges, transitions, greater exposure to adversity and traumatic life events, limited coping skills, and insufficient supports contribute further to this vulnerability. If adjustment issues are not adequately addressed, they might give rise to adjustment disorders, which are diagnosed when a life event or trigger has contributed to the mental distress.260
Offer counseling before stressors occur
Offer or facilitate supportive counseling before these developmental challenges and life stressors occur (see Mental Health Intervention, psychological therapies).
Recommended
Expert
People with IDD have increased vulnerability to mental stress compared to those in the general population. Developmental challenges, transitions, greater exposure to adversity and traumatic life events, limited coping skills, and insufficient supports contribute further to this vulnerability. If adjustment issues are not adequately addressed, they might give rise to adjustment disorders, which are diagnosed when a life event or trigger has contributed to the mental distress.260
Screen for psychiatric disorder
Screen for a possible psychiatric disorder by looking for changes from baseline in mental state and behaviour (see Psychiatric Symptoms and Behaviour Screening tool, page 75).258
Strongly Recommended
Ecosystem Expert
Psychiatric disorders (eg, mood and anxiety disorders) are common among adults with IDD, but the signs and symptoms might be seen as part of the IDD (ie, diagnostic overshadowing) rather than a change indicating a psychiatric disorder. Consequently, psychiatric disorders might not be recognized and addressed.252, 273-275
Seek interprofessional assessment from specialists
Seek interprofessional assessment from specialists in psychiatry, psychology, or speech-language pathology, preferably those with expertise in IDD. Review previous psychiatric diagnoses. Consider use of self-report and informant questionnaires developed for people with IDD (eg, Glasgow Depression Scale for People with a Learning Disability, Glasgow Anxiety Scale for People with an Intellectual Disability, Glasgow Depression Scale-Caregiver Supplement ).281-283
Strongly Recommended
Empirical Ecosystem Expert
Establishing a diagnosis of a psychiatric disorder in adults with IDD is often complicated by communication barriers or atypical presentations.274, 275 In general, anxiety, mood, trauma and stressor-related disorders (eg, PTSD and adjustment disorder) are underdiagnosed while psychotic disorders are overdiagnosed in people with IDD.252, 276-280
Consult information on behavioural phenotypes
Consult available information regarding behavioural phenotypes associated with specific syndromes (eg, autism spectrum disorder 286, fetal alcohol spectrum disorder 287 and Williams syndrome).288
Recommended
Expert
Some IDD syndromes are associated with increased risk of particular developmental, neurologic or behavioural manifestations and emotional disturbances (ie, “behavioural phenotypes”).284, 285
Explore for trauma
Explore for possible trauma, possibly unknown to new care providers; be alert for signs of PTSD such as reexperiencing (eg, psychotic presentations and behavioural enactments; avoidance, which might be interpreted as noncompliance; and increased arousal, which can present as irritability).291
Strongly Recommended
Expert Experiential
PTSD is underdiagnosed and might manifest as anxiety, mood disturbance, or change in behaviour (eg, “non-compliance”, self-injury, aggression, outbursts of anger, irritability) and might occur in response to events not typically considered to be traumatizing (eg, siblings leaving home).289-291
Work interprofessionally
Work with an interprofessional team to help clarify diagnoses in patients with limited or atypical use of language.294, 295
Recommended
Expert
Psychotic disorders, which include schizophrenia and traumatic psychosis, are especially difficult to diagnose in people with IDD when their delusions and hallucinations cannot be expressed verbally.279, 280, 292 Developmentally appropriate fantasies and imaginary friends might be mistaken for delusions, and self-conversation mistaken for hallucination.279, 280, 293
Screen for trauma
Screen for trauma.291
Recommended
Expert
Sexual abuse occurring during childhood can be associated with hearing voices in adulthood.296, 297
Screen hearing and vision
Screen for and address possible hearing and vision impairments (see Vision and Hearing Impairments).
Recommended
Empirical
There is increased risk of psychosis associated with visual 277 and hearing 298 impairment and social isolation.
Work with caregivers to ensure communication and inclusion
Work with caregivers to ensure optimal communication299, 300 (see Effective Communication) and inclusion to prevent social isolation (see Abuse, Exploitation and Neglect).
Recommended
Empirical Expert
There is increased risk of psychosis associated with visual 277 and hearing 298 impairment and social isolation.
Implement a systematic and sequential assessment approach to assessment
Implement a systematic and sequential approach, such as the HELP approach (Behaviours that Challenge) to identify contributing causes or seek consultation from an interprofessional mental health team.276, 277
Strongly Recommended
Empirical Expert
Emotional, psychiatric, and medical conditions can coexist and give rise to clinical and diagnostic complexity.301 A biopsychosocial approach assists in unravelling these complexities.50, 252, 302
Guide to Understanding Behavioural Problems
The Guide to Understanding Behavioural Problems and Emotional Concerns in Adults with Developmental Disabilities for primary care providers and caregivers, was developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011). It aims to identify causes of behavioural problems in order to plan for treatment and management, and prevent reoccurrence.
Health Watch Tables
The Health Watch Table: Fetal alcohol spectrum disorder (FASD), developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), guides preventive health care for adults with FASD.
The Health Watch Table: Williams syndrome, developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), guides preventive health care for adults with developmental disabilities who have Williams syndrome
The Health Watch Table: Autism spectrum disorder (ASD), developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), guides preventive health care for adults with developmental disabilities who have ASD.
The Glasgow Depression and Anxiety Scales
The [EXTERNAL Link] Glasgow Depression Scale for people with a learning disability [close link] developed by FM Cuthill, Colin Espie, and Sally-Ann Cooper (2003) at University of Glasgow, is a tool to screen for self-reported depression among people with intellectual and developmental disabilities. The accompanying caregiver supplement scale can be used to assess caregiver depression.
The [EXTERNAL Link] Glasgow Anxiety Scale for people with an intellectual disability [close link] developed by J Mindham and Colin Espie (2003) at University of Glasgow is a tool to screen for self-reported anxiety among people with mild intellectual and developmental disabilities.
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
50. Bradley E, Korossy M. HELP with behaviours that challenge. Journal on Developmental Disabilities. 2016;22(2):101-20.
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.
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.
273. Cooper SA, McLean G, Guthrie B, McConnachie A, Mercer S, Sullivan F, et al. Multiple physical and mental health comorbidity in adults with intellectual disabilities: Population-based cross-sectional analysis. BMC Fam Pract. 2015;16:110,015-0329-3.
274. Fletcher R, Barnhill J, Cooper S, editors. Diagnostic Manual – Intellectual Disability (DM-ID 2): A Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability. 2nd ed. Kingston, NY: NADD Press; 2017.
275. Royal College of Psychiatrists. DC-LD: [diagnostic criteria for psychiatric disorders for use with adults with learning disabilities/mental retardation]. London: Gaskell; 2001.
276. Bradley E, Lunsky Y, Palucka A, Homitidis S. Recognition of intellectual disabilities and autism in psychiatric inpatients diagnosed with schizophrenia and other psychotic disorders. Advances in Mental Health. 2011;5(6):4-18.
277. Cooper SA, Smiley E, Morrison J, Allan L, Williamson A, Finlayson J, et al. Psychosis and adults with intellectual disabilities. prevalence, incidence, and related factors. Soc Psychiatry Psychiatr Epidemiol. 2007;42(7):530-6.
278. Lunsky Y, Bradley E, Durbin J, Koegl C. A comparison of patients with intellectual disability receiving specialised and general services in ontario’s psychiatric hospitals. J Intellect Disabil Res. 2008;52(11):1003-12.
279. Myers B. Psychotic disorders in people with mental retardation: Diagnostic and treatment issues. Mental Health Aspects of Developmental Disabilities. 1999;2(1):1-11.
280. Myers R, [formerly Ruth Ryan]. Recognizing psychosis in persons with intellectual disabilities who do not use speech.
281. Mileviciute I, Hartley SL. Self-reported versus informant-reported depressive symptoms in adults with mild intellectual disability. J Intellect Disabil Res. 2015;59(2):158-69.
282. Cuthill FM, Espie CA, Cooper SA. Development and psychometric properties of the Glasgow depression scale for people with a learning disability. individual and carer supplement versions. Br J Psychiatry. 2003;182:347-53.
283. Mindham J, Espie CA. Glasgow anxiety scale for people with an intellectual disability (GAS-ID): Development and psychometric properties of a new measure for use with people with mild intellectual disability. J Intellect Disabil Res. 2003;47(Pt 1):22-30.
285. Levitas A, Finucane B, Simon E, Schuster M, Kates W, Olszewski AK, et al. Chapter 3: Behavioral phenotypes and neurodevelopmental disorders. In: Fletcher R, Barnhill J, Cooper S, editors. Diagnostic manual – intellectual disability (DM-ID 2): A textbook of diagnosis of mental disorders in persons with intellectual disability. 2nd ed. Kingston, NY: NADD Press; 2017. p. 35-74.
286. Bradley,Elspeth, Alvin Loh, Elizabeth Grier, Marika Korossy and Donna Cameron. Health watch table: Autism spectrum disorder (ASD). Toronto: Surrey Place. 2014. Accessed 2017 Oct 20.
287. Tao,Leeping, Valerie Tmple, Ian Casson and S. M. L. Kirkpatrick. Health watch table: Fetal alcohol spectrum disorder (FASD). Toronto: Surrey Place. 2013. Accessed 2017 Oct 20.
288. Forster-Gibson,C. and J. Berg. Health watch table: Williams syndrome. Toronto: Surrey Place. 2013. Accessed 2017 Oct 20.
289. Hubert J, Hollins S. Men with severe learning disabilities and challenging behaviour in long-stay hospital care: Qualitative study. Br J Psychiatry. 2006;188:70-4.
290. Mevissen L, de Jongh A. PTSD and its treatment in people with intellectual disabilities. A review of the literature. Clin Psychol Rev. 2010;30(3):308-16.
291. McCarthy J, Blanco RA, Gaus VL, Razza NJ, Tomasulo DJ. Chapter 15: Trauma- and stressor-related disorders. In: Fletcher R, Barnhill J, Cooper S, editors. Diagnostic manual – intellectual disability (DM-ID 2): A textbook of diagnosis of mental disorders in persons with intellectual disability. 2nd ed. Kingston, NY: NADD Press; 2017. p. 353-400.
293. Deb S, Matthews T, Holt G, Bouras N. Practice guidelines for the assessment and diagnosis of mental health problems in adults with intellectual disability. Cheapside, Brighton: Pavilion; 2001.
294. Bradley EA, Goody R, McMillan S, Levitas A. Common mental disorders (depression, anxiety, OCD, PTSD). In: Hassiotis A, Barron DA, Hall I, editors. Intellectual disability psychiatry: a practical handbook. Chichester, England: Wiley-Blackwell; 2009. p. 51-66.
295. Summers J, Boyd K, Reid J, Adamson J, Habjan B, Gignac V, et al. The interdisciplinary mental health team. In: Griffiths DM, Stavrakaki C, Summers J, editors. Dual diagnosis: an introduction to the mental health needs of persons with developmental disabilities. . [Internet]. Sudbury, Canada: Habilitative Mental Health Resource Network; 2002. p. 325-57.
296. Read J, Fosse R, Moskowitz A, Perry B. The traumagenic neurodevelopmental model of psychosis revisited. Neuropsychiatry. 2014;4(1):65-79.
297. Longden E, Madill A, Waterman MG. Dissociation, trauma, and the role of lived experience: Toward a new conceptualization of voice hearing. Psychol Bull. 2012;138(1):28-76.
298. Linszen MMJ, Brouwer RM, Heringa SM, Sommer IE. Increased risk of psychosis in patients with hearing impairment: Review and meta-analyses. Neurosci Biobehav Rev. 2016;62:1-20.
299. Boardman L, Bernal J, Hollins S. Communicating with people with intellectual disabilities: A guide for general psychiatrists. Advances in Psychiatric Treatment. 2014;20(1):27-36.
300. Royal College of Speech and Language Therapists. Five good communication standards. London, UK: RCSLT; 2013.
301. Azimi K, Modi M, Hurlbut J, Lunsky Y. Occurrence of medical concerns in psychiatric outpatients with intellectual disabilities. Journal of Mental Health Research in Intellectual Disabilities. 2016:1-13.
292. Hemmings C. Chapter 10: Schizophrenia spectrum disorders. In: Tsakanikos E, McCarthy JM, editors. Handbook of psychopathology in intellectual disability: research, practice, and policy. New York: Springer; 2014.
284. Hodapp RM, Dankner NA, Dykens EM. Chapter 18 behavioural phenotypes/genetic syndromes. In: Hemmings C, Bouras N, editors. Psychiatric and behavioral disorders in intellectual and developmental disabilities. 3rd ed. England: Cambridge University Press; 2016. p. 196-206.
302. Melville CA, Johnson PC, Smiley E, Simpson N, Purves D, McConnachie A, et al. Problem behaviours and symptom dimensions of psychiatric disorders in adults with intellectual disabilities: An exploratory and confirmatory factor analysis. Res Dev Disabil. 2016;55:1-13.
