Skip to main content Accessibility help

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
×
Hostname: page-component-8448b6f56d-t5pn6 Total loading time: 0 Render date: 2024-04-23T05:56:09.363Z Has data issue: false hasContentIssue false

Chapter 1 - Epidemiology of Intellectual Disability

from Section 1 - Understanding Intellectual Disability

Published online by Cambridge University Press:  14 January 2019

By
Christine Linehan
Edited by
Mark Scheepers  and
Mike Kerr
Mark Scheepers
Affiliation:
2gether NHS Trust
Mike Kerr
Affiliation:
Cardiff University
Get access
Type
Chapter
Information
Seminars in the Psychiatry of Intellectual Disability , pp. 1 - 11
Publisher: Cambridge University Press
Print publication year: 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-5®). American Psychiatric Publishing.Google Scholar
Bertelli, M., Hassiotis, A., Deb, S. et al. (2009) New contributions of psychiatric research in the field of intellectual disabilities. Advances in Psychiatry, 3, 37–43.Google Scholar
Bertelli, M., Munir, K., Harris, J. et al. (2016) ‘Intellectual developmental disorders’: Reflections on the international consensus document for redefining ‘mental retardation-intellectual disability’ in ICD-11. Advances in Mental Health and Intellectual Disabilities, 10(1), 1–23.CrossRefGoogle ScholarPubMed
Bittles, A. H., Petterson, B. A., Sullivan, S. G. et al. (2002) The influence of intellectual disability on life expectancy. Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 57(7), M470–M472.Google Scholar
Buckles, J., Luckasson, R. & Keefe, E. (2013) A systematic review of the prevalence of psychiatric disorders in adults with intellectual disability 2003–2010. Journal of Mental Health Research in Intellectual Disabilities, 6(3), 181–207.Google Scholar
Buntinx, W. (2015) Adaptive behaviour and support needs. In The Handbook of Intellectual Disability and Clinical Psychology Practice (2nd edn) (eds. Carr, A., Linehan, C., O’Reilly, G. et al.), pp. 107–35. Routledge.Google Scholar
Bush, A. & Beail, N. (2004) Risk factors for dementia in people with Down syndrome: Issues in assessment and diagnosis. American Journal on Mental Retardation, 109(2), 83–97.Google Scholar
Chan, L., Doctor, J. N., Maclehose, R. F. et al. (1999) Do Medicare patients with disabilities receive preventative services? A population-based study. Archives of Physical and Medical Rehabilitation, 80(6), 642–6.CrossRefGoogle ScholarPubMed
Cooper, S. A., Smiley, E., Morrison, J., et al. (2007) Mental ill-health in adults with intellectual disabilities: Prevalence and associated factors. British Journal of Psychiatry, 190(1), 27–35.CrossRefGoogle ScholarPubMed
Cooper, S. A. & van der Speck, R. (2009) Epidemiology of mental ill health in adults with intellectual disabilities. Current Opinion in Psychiatry, 22(5), 431–6.Google Scholar
Dave, U., Shetty, N. & Mehta, L. (2005) A community genetics approach to population screening in India for mental retardation – A model for developing countries. Annals of human biology, 32(2), 195–203.Google Scholar
Devlieger, J. P. (2003) From ‘idiots’ to ‘person with mental retardation’. Defining differences in an effort to dissolve it. In Rethinking Disability: The Emergence of New Definitions, Concepts and Communities (eds. Devlieger, J. P., Rusch, R. & Pfeiffer, D.), pp. 169–188. Garant.Google Scholar
Devlieger, J. P., Rusch, F. & Pfeiffer, D. (2003) Rethinking Disability: The Emergence of New Definition, Concepts and Communities. Garant.Google Scholar
Doyle, A. & Carew, A. M. (2016) Annual Report of the National Intellectual Disability Database Committee 2015. Health Research Board.Google Scholar
Drum, C. E. (2009) Models and approaches to disability. In Disability and Public Health (eds. Drum, C. E., Krahn, G. L. & Bersani, H.), pp. 27–44. American Association on Intellectual and Developmental Disabilities.Google Scholar
Dykens, E. M. (1995) Measuring behavioural phenotypes: Provocations from the ‘new genetics’. American Journal on Mental Retardation, 99, 522–32.Google Scholar
Einfeld, S. L., Piccinin, A. M., Mackinnon, A. et al. (2006) Psychopathology in young people with intellectual disability. JAMA, 296(16), 1981–9.Google Scholar
Emerson, E. (2011) Health status and health risks of the ‘hidden majority’ of adults with intellectual disability. Intellectual and Developmental Disabilities, 49, 155–65.Google Scholar
Emerson, E. (2012) Deprivation, ethnicity and the prevalence of intellectual and developmental disabilities. Journal of Epidemiology and Community Health, 66(3), 218–24.CrossRefGoogle ScholarPubMed
Emerson, E., Emerson, E. & Glover, G. (2012) The ‘transition cliff’ in the administrative prevalence of learning disabilities in England. Tizard Learning Disability Review, 17(3), 139–43.CrossRefGoogle Scholar
Emerson, E. & Hatton, C. (2007) Poverty, socio‐economic position, social capital and the health of children and adolescents with intellectual disabilities in Britain: A replication. Journal of Intellectual Disability Research, 51(11), 866–74.Google Scholar
Farrington, D. & Welsh, B. (2007) Saving Children from a Life of Crime. Oxford University Press.Google Scholar
Felstrom, A., Mulryan, N., Reidy, J. et al. (2005) Refining diagnoses: Applying the DC‐LD to an Irish population with intellectual disability. Journal of Intellectual Disability Research, 49(11), 813–19.Google Scholar
Greenspan, S. (2003) Mental retardation: Some issues for concern. In What Is Mental Retardation? Ideas for an Evolving Disability (eds. Switzky, H. N. & Greenspan, S.), pp. 64–74. American Association on Mental Retardation.Google Scholar
Greenspan, S. (2006a) Functional concepts in mental retardation: Finding the natural essence of an artificial category. Exceptionality, 14, 205–24.CrossRefGoogle Scholar
Greenspan, S. (2006b) Mental retardation in the real world: Why the AAMR definition is not there yet. In What Is Mental Retardation? Ideas for an Evolving Disability (eds. Switzky, H. N. & Greenspan, S.), pp. 165–83. American Association on Mental Retardation.Google Scholar
Grossman, H. J. (1983) Classification in Mental Retardation (rev. edn) American Association on Mental Deficiency.Google Scholar
Gustavsson, A., Svensson, M., Jacobi, F. et al. (2011) Cost of disorders of the brain in Europe 2010. European Neuropsychopharmacology, 21(10), 718–79.Google Scholar
Hassiotis, A. (2015) Borderline intellectual functioning and neurodevelopmental disorders: Prevalence, comorbidities and treatment approaches. Advances in Mental Health and Intellectual Disabilities, 9(5), 275–83.Google Scholar
Hatton, C. (2012) Intellectual Disabilities – Classification, epidemiology and causes. In Clinical Psychology and People with Intellectual Disabilities (2nd edn) (eds. Emerson, E., Hatton, C., Dickson, K. et al.), pp. 3–22. Wiley.Google Scholar
Havercamp, S. M. & Scott, H. M. (2015) National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and Health Journal, 8(2), 165–72.Google Scholar
Heber, R. (1959) A manual on terminology and classification in mental retardation: A monograph supplement to the American Journal on Mental Deficiency, 64.Google Scholar
Heikura, U., Taanila, A., Olsen, P. et al. (2003) Temporal changes in incidence and prevalence of intellectual disability between two birth cohorts in Northern Finland. American Journal on Mental Retardation, 108(1), 19–31.Google Scholar
Heslop, P., Blair, P. S., Fleming, P. et al. (2014) The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: A population-based study. The Lancet, 383(9920), 889–95.Google Scholar
Hodaoom, R. M., Burack, J. A. & Zigler, E. (1990) Issues in the Developmental Approach to Mental Retardation. Cambridge University Press.Google Scholar
Hollins, S. Attard, M., van Fraunhofer, N. et al. (1998) Mortality in people with learning disability: Risks causes, and death certification findings in London. Developmental Medicine and Child Neurology, 40, 50–6.Google Scholar
Iezzoni, L. I., McCarthy, E. P., Davis, R. B. et al. (2000) Mobility impairments and use of screening and preventative services. American Journal of Public Health, 90, 955–61.Google Scholar
Katusic, S. K., Colligan, R. C., Beard, C. M. et al. (1996) Mental retardation in a birth cohort, 1976–1980, Rochester, Minnesota. American Journal of Mental Retardation, 100(4), 335–44.Google Scholar
King, B. H., Toth, K. E., Hodapp, R. M. et al. (2009) Intellectual disability. In Kaplan and Sadock’s Comprehensive Textbook of Psychiatry (eds. Sadock, B. J., Sadock, V. A., Ruiz, P.), pp. 3444–74. Lippencott, Williams & Wilkins.Google Scholar
Krahn, G. L., Hammond, L. & Turner, A. (2006) A cascade of health disparities: Health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 12, 70–82.Google Scholar
Leonard, H., Petterson, B., Bower, C. et al. (2003) Prevalence of intellectual disability in Western Australia. Paediatric and Perinatal Epidemiology, 17(1), 58–67.Google Scholar
Leonard, H. & Wen, X. (2002) The epidemiology of mental retardation: Challenges and opportunities in the new millennium. Mental Retardation and Developmental Disabilities Research Reviews, 8(3), 117–34.CrossRefGoogle ScholarPubMed
McGuidan, S. M., Hollins, S., Attard, M. (1995) Age specific standardised mortality rates in people with learning disability. Journal of Intellectual Disability Research, 39, 527–31.Google Scholar
McKenzie, K., Milton, M., Smith, G. et al. (2016) Systematic review of the prevalence and incidence of intellectual disabilities: Current trends and issues. Current Developmental Disorders Reports, 3, 104–15.Google Scholar
McLaren, J. & Bryson, S. E. (1987) Review of recent epidemiological studies of mental retardation: Prevalence, associated disorders, and etiology. American Journal on Mental Retardation, 92, 243–54.Google Scholar
Maulik, P. K. & Harbour, C. K. (2010) Epidemiology of intellectual disability. In International Encyclopedia of Rehabilitation (eds. Stone, J. H. & Blouin, M.) Center for International Rehabilitation Research Information and Exchange.Google Scholar
Maulik, P. K., Mascarenhas, M. N., Mathers, C. D. et al. (2011) Prevalence of intellectual disability: A meta-analysis of population-based studies. Research in Developmental Disabilities, 32, 419–36.Google Scholar
Morgan, V., Leonard, H, Bourke, J. et al. (2008) Intellectual disability co-occurring with schizophrenia and other psychiatric illness: Population-based study. British Journal of Psychiatry, 193(5), 364–72.Google Scholar
Parish, S. L., Seltzer, M. M., Greenberg, J. S. et al. (2004) Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental Retardation, 42(6), 413–26.Google Scholar
Patja, K., Iivanainen, M., Vesala, H. et al. (2000) Life expectancy of people with intellectual disability: A 35‐year follow‐up study. Journal of Intellectual Disability Research, 44(5), 591–9.CrossRefGoogle ScholarPubMed
Pedersen, C. B., Mors, O., Bertelsen, A. et al. (2014) A comprehensive nationwide study of the incidence rate and lifetime risk for treated mental disorders. JAMA Psychiatry, 71(5), 573–81.CrossRefGoogle ScholarPubMed
Porta, M. (ed.) (2008) A Dictionary of Epidemiology. Oxford University Press.Google Scholar
Puri, B. K., Lekh, S. K., Langa, A. et al. (1995) Mortality in a hospitalised mentally handicapped population: A 10-year survey. Journal of Intellectual Disability Research, 39, 442–6.Google Scholar
Ramirez, A., Farmer, G. C., Grant, D. et al. (2005) Disability and preventive cancer screening: Results from the 2001 California Health Interview Survey. American Journal of Public Health, 95(11), 2057–64.Google Scholar
Rocca, W. A., Yawn, B. P., St. Sauver, J. L. et al. (2012) History of the Rochester Epidemiology Project: Half a century of medical records linkage in a US population. Mayo Clinic Proceedings, 87(12), 1202–13.Google Scholar
Salvador-Carulla, L., García-Gutiérrez, J. C., Gutiérrez-Colosía, M. R. et al. (2013) Borderline intellectual functioning: consensus and good practice guidelines. Revista de Psiquiatría y Salud Mental (English Edition), 6(3), 109–20.Google Scholar
Salvador-Carulla, L., Ruiz, M. & Nadal, M. (2011), Funcionamiento Intelectual Límite (FIL): Guía de Consenso y Buenas Prácticas, Obra Social Caja Madrid.Google Scholar
Schalock, R. L. (2013) Introduction to the intellectual disability construct. In The Story of Intellectual Disability: An Evolution of Meaning, Understanding, and Public Perception (ed. Wehmeyer, M. L.). Brookes.Google Scholar
Schalock, R. L., Borthwick-Duffy, S. A., Bradley, V. J. et al. (2010) Intellectual Disability: Definition, Classification, and Systems of Supports. American Association on Intellectual and Developmental Disabilities.Google Scholar
Shahtahmasebi, S., Emerson, E., Berridge, D. et al. (2011) Child disability and the dynamics of family poverty, hardship and financial strain: Evidence from the UK. Journal of Social Policy, 40(4), 653–73.Google Scholar
Simonoff, E. (2015) Intellectual disability. In Rutter’s Child and Adolescent Psychiatry (6th edn) (eds. Thapar, A., Pine, D. S., Leckman, J. F. et al.), pp. 719–37. Wiley-Blackwell.Google Scholar
Siperstein, G. N., Parker, R. C. & Drascher, M. (2013) National snapshot of adults with intellectual disabilities in the labor force. Journal of Vocational Rehabilitation, 39(3), 157–65.Google Scholar
Stein, Z., Belmont, L. & Durkin, M. (1987) Mild mental retardation and severe mental retardation compared: Experiences in eight less developed countries. Upsala Journal of Medical Sciences. Supplement, 44, 89–96.Google Scholar
Strydom, A., Hassiotis, A. & Livingston, G. (2005) Mental health and social care needs of older people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 18, 229–35.Google Scholar
Switzky, H. N. & Greenspan, S. (2006) What Is Mental Retardation? Ideas for an Evolving Disability in the 21st Century. American Association of Mental Retardation.Google Scholar
Tassé, M. J., Luckasson, R. & Schalock, R. L. (2016) The relation between intellectual functioning and adaptive behavior in the diagnosis of intellectual disability. Intellectual and Developmental Disabilities, 54(6), 381–90.Google Scholar
Thapar, A., Pine, D. S., Leckman, J. F. et al. (2015) Rutter’s Child and Adolescent Psychiatry. Wiley.Google Scholar
Thompson, J. R., Bradley, V. J., Buntinx, W. et al. (2009) Conceptualising supports and the support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47(2), 135–46.Google Scholar
Tyrer, F. & McGrother, C. (2009) Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disabilities. Journal of Intellectual Disability Research, 53, 898–904.Google Scholar
Schrojenstein, Van, Lantman de Valk, H., Metsemakes, J., Haveman, M. et al. (2000) Health problems in people with intellectual disability in general practice: A comparative study. Family Practice, 17(5), 405–7.Google Scholar
Wells, T., Sandefur, G. D. & Hogan, D. P. (2003) What happens after the high school years among young persons with disabilities? Social Forces, 82, 803–32.CrossRefGoogle Scholar
Whitehead, M. (1990) The Concepts and Principles of Equity in Health. World Health Organization.Google Scholar
WHO (1992) The ICD-10 Classification of Mental and Behavioural Disorders. Clinical Descriptions and Diagnostic Guidelines. World Health Organization.Google Scholar
WHO (2001) International Classification of Functioning, Disability and Health: ICF. World Health Organization.Google Scholar
Ziegler, E. (1967) Familial mental retardation: A continuing dilemma. Science, 155, 292–8.Google Scholar

Save book to Kindle

To save this book to your Kindle, first ensure coreplatform@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×