Intellectual disability in children: Definition, diagnosis, and assessment of needs
- Penelope Pivalizza, MD
Penelope Pivalizza, MD
- Developmental and Behavioral Pediatrician
- Independent practice, Houston
- Seema R Lalani, MD
Seema R Lalani, MD
- Associate Professor, Department of Molecular and Human Genetics
- Baylor College of Medicine
- Section Editors
- Marc C Patterson, MD, FRACP
Marc C Patterson, MD, FRACP
- Section Editor — Pediatric Neurology
- Professor of Neurology, Pediatrics, and Medical Genetics
- Chair, Division of Child and Adolescent Neurology
- Mayo Clinic College of Medicine
- Helen V Firth, DM, FRCP, DCH
Helen V Firth, DM, FRCP, DCH
- Section Editor — Genetics
- Consultant Clinical Geneticist
- Addenbrooke's Hospital, Cambridge, UK
- Carolyn Bridgemohan, MD
Carolyn Bridgemohan, MD
- Section Editor — Developmental and Behavioral Pediatrics
- Assistant Professor of Pediatrics
- Harvard Medical School
Intellectual disability (ID) is a neurodevelopmental disorder characterized by deficits in intellectual and adaptive functioning that present before 18 years of age . ID is heterogeneous in etiology and encompasses a broad spectrum of functioning, disability, needs, and strengths.ID affects approximately 1 percent of the population. It is an important public health issue because of its prevalence and the need for extensive support services. Its management requires early diagnosis and intervention, coupled with access to health care and appropriate supports.
The definition and diagnosis of ID, including assessment of needs for support, are reviewed here. Other aspects of ID are discussed separately:
Intellectual disability — ID is a state of functioning that begins in childhood and is characterized by limitations in intelligence and adaptive skills. The term replaces and improves upon the older term of "mental retardation" . A variety of other terms are used outside of the United States to describe ID (table 1).To continue reading this article, you must log in with your personal, hospital, or group practice subscription. For more information on subscription options, click below on the option that best describes you:
- American Psychiatric Association. Intellectual Disability (Intellectual Developmental Disorder). In: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, American Psychiatric Association (Ed), Arlington, VA 2013. p.33.
- American Association of Intellectual and Developmental Disabilities (AAIDD), Definition of Intellectual Disability, available at: http://aaidd.org/intellectual-disability/definition (Accessed on July 11, 2013).
- Kaufman L, Ayub M, Vincent JB. The genetic basis of non-syndromic intellectual disability: a review. J Neurodev Disord 2010; 2:182.
- Chelly J, Khelfaoui M, Francis F, et al. Genetics and pathophysiology of mental retardation. Eur J Hum Genet 2006; 14:701.
- Lott IT, Dierssen M. Cognitive deficits and associated neurological complications in individuals with Down's syndrome. Lancet Neurol 2010; 9:623.
- Szymanski L, King BH. Summary of the Practice Parameters for the Assessment and Treatment of Children, Adolescents, and Adults with Mental Retardation and Comorbid Mental Disorders. American Academy of Child and Adolescent Psychiatry. J Am Acad Child Adolesc Psychiatry 1999; 38:1606.
- Szymanski L, King BH. Practice parameters for the assessment and treatment of children, adolescents, and adults with mental retardation and comorbid mental disorders. American Academy of Child and Adolescent Psychiatry Working Group on Quality Issues. J Am Acad Child Adolesc Psychiatry 1999; 38:5S.
- Weitzman C, Wegner L, Section on Developmental and Behavioral Pediatrics, et al. Promoting optimal development: screening for behavioral and emotional problems. Pediatrics 2015; 135:384.
- Bryson SE, Bradley EA, Thompson A, Wainwright A. Prevalence of autism among adolescents with intellectual disabilities. Can J Psychiatry 2008; 53:449.
- Molloy CA, Murray DS, Kinsman A, et al. Differences in the clinical presentation of Trisomy 21 with and without autism. J Intellect Disabil Res 2009; 53:143.
- Wise JC, Sevcik RA, Romski M, Morris RD. The relationship between phonological processing skills and word and nonword identification performance in children with mild intellectual disabilities. Res Dev Disabil 2010; 31:1170.
- Balogh R, Bretherton K, Whibley S, et al. Sexual abuse in children and adolescents with intellectual disability. J Intellect Disabil Res 2001; 45:194.
- Wissink IB, van Vugt E, Moonen X, et al. Sexual abuse involving children with an intellectual disability (ID): a narrative review. Res Dev Disabil 2015; 36:20.
- Soylu N, Alpaslan AH, Ayaz M, et al. Psychiatric disorders and characteristics of abuse in sexually abused children and adolescents with and without intellectual disabilities. Res Dev Disabil 2013; 34:4334.
- Council on Children With Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, Medical Home Initiatives for Children With Special Needs Project Advisory Committee. Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening. Pediatrics 2006; 118:405.
- Wetherby AM, Prizant BM. Communication and symbolic behavior scales: Developmental profile, Paul H. Brookes Publishing Company, Baltimore, MD 2002.
- Eadie PA, Ukoumunne O, Skeat J, et al. Assessing early communication behaviours: structure and validity of the Communication and Symbolic Behaviour Scales-Developmental Profile (CSBS-DP) in 12-month-old infants. Int J Lang Commun Disord 2010; 45:572.
- Levetown M, American Academy of Pediatrics Committee on Bioethics. Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics 2008; 121:e1441.
- Majnemer A, Shevell MI. Diagnostic yield of the neurologic assessment of the developmentally delayed child. J Pediatr 1995; 127:193.
- Shevell MI, Majnemer A, Rosenbaum P, Abrahamowicz M. Etiologic yield of subspecialists' evaluation of young children with global developmental delay. J Pediatr 2000; 136:593.
- Battaglia A, Bianchini E, Carey JC. Diagnostic yield of the comprehensive assessment of developmental delay/mental retardation in an institute of child neuropsychiatry. Am J Med Genet 1999; 82:60.
- Moeschler JB, Shevell M, American Academy of Pediatrics Committee on Genetics. Clinical genetic evaluation of the child with mental retardation or developmental delays. Pediatrics 2006; 117:2304.
- Shevell M, Ashwal S, Donley D, et al. Practice parameter: evaluation of the child with global developmental delay: report of the Quality Standards Subcommittee of the American Academy of Neurology and The Practice Committee of the Child Neurology Society. Neurology 2003; 60:367.
- Pearson website, Clinical Assessment. Available at: http://www.pearsonclinical.com/ (Accessed on April 08, 2014).
- Houghton Mifflin Harcourt website, available at: http://www.riverpub.com/products/sb5/details.html (Accessed on April 08, 2014).
- Roid GH, Miller LJ, Pomplun M, Koch C. Leiter International Scale, 3rd Ed, Stoelting Co., Wood Dale, IL. 2013.
- Stein MT, Lukasik MK. Developmental screening and assessment: infants, toddlers, and preschoolers. In: Developmental-Behavioral Pediatrics, 3rd, Levine MD, Carey WB, Crocker AC (Eds), Saunders Elsevier, Philadelphia 2009. p.785.
- Griffiths mental development scales - revised: Birth to 2 years. Available from Hogrefe, at: http://www.hogrefe.co.uk/griffiths-mental-development-scales-revised-birth-to-2-years-gmds-0-2.html (Accessed on April 08, 2014).
- Luiz DM, Foxcroft CD, Stewart R. The construct validity of the Griffiths Scales of Mental Development. Child Care Health Dev 2001; 27:73.
- Sattler JM. Assessment of Children: Cognitive Applications, 3rd, Jerome M (Ed), Sattler, San Diego 1988.
- American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR), Fourth edition, Text revision, American Psychiatric Association, Washington, DC 2000.
- Intellectual disability
- Syndromic versus nonsyndromic ID
- Global developmental delay
- CLINICAL FEATURES
- Presenting symptoms
- Associated conditions
- - Medical conditions
- - Other neurodevelopmental disorders and mental health problems
- CLINICAL EVALUATION
- Detailed evaluation
- - History
- - Physical examination
- - Sensory screening
- DIAGNOSIS OF ID AND NEEDS ASSESSMENT
- Adaptive function
- Intellectual function
- - Standardized intelligence tests
- - Interpretation and limitations of IQ testing
- Classification of severity
- SUMMARY AND RECOMMENDATIONS