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Intellectual Disability/Mental Retardation - Ongoing Assessment
Screening
Developmental screening should identify children with developmental delay early, depending on the severity. Use of a standardized screening tool provides the best combination of sensitivity (not missing achildren with delays) and specificity (minimizing the evaluation of children with no delays). See Developmental Screening for an overview of screening strategies and tools. Also see Developmental Behavioral Pediatrics Online (dbpeds.org).Diagnostic Criteria
Classification of mental retardation allows the examiner to clarify the severity of ID/MR and the level of support that will be required for the child in the educational system and beyond. Both intelligence (measured as IQ) and adaptive behavior scales are important in the evaluation. IQ scores from the ICD-9 [National: 2007] classification and the DSM-IV [American: 2000] classification (in parentheses) are included below; typically the definition of mental retardation requires that a child be below the population average by at least two standard deviations on measure of intelligence.- Borderline Intellectual Functioning - IQ=67-85 (71-84, DSM-IV).
- Mild MR - IQ=52-68, ICD9 (50-55 to 70, DSM-IV) Affected children are able to speak and to learn some social skills. They can usually be expected to care for themselves as adults, with some guidance.
- Moderate MR - IQ=36-51, ICD9 (35-40 to 50-55, DSM-IV) Affected children, although they are able to learn some language, usually have poor social skills. They will be able to achieve in school to about the elementary school level. Because their early motor milestones are usually attained in the normal range, children at this IQ level and above tend to be diagnosed around the preschool period. However, language development and achievement of activities of daily living and social skills are often delayed. They will generally need complete supervision as an adult, often in a group home setting. They may be capable of unskilled occupations in a supported-employment setting.
- Severe MR - IQ=20-35, ICD-9 (20-25 to 35-40, DSM-IV) Affected children will be able to learn a few words and a few self-help skills, but will need a protected environment as an adult. A living situation in a group home with increased support will generally be possible. Children with severe and profound MR are often diagnosed very early because acquisition of even the earliest motor milestones are delayed.
- Profound MR - IQ=19 and below, ICD-9 (less than 20-25, DSM-IV) Affected children will generally need full care as adults, often in an environment like a nursing home.
History And Examination
Interim History
Ask about sleep problems. Ask if the child snores excessively or has daytime sleepiness.Developmental and Educational Progress
In addition to asking the child and family directly, reports from early intervention or school including evaluations and report cards, are helpful to monitor progress in this area. Ask about behavior problems and self-injurious behaviors. Mental health problems are frequent in children and adolescents with ID.Social and Family Functioning
Ask about the child's and family's functioning and support. See Resources below for links to financial help, adaptive recreation and other helpful services.Subspecialist Evaluations
Depending on etiology of the intelllectual disability, followup referrals may be useful to help with ongoing care of the child.
Pediatric Medical Genetics (see Services below for relevant providers)
Consider having children with ID of unknown etiology seen by genetics periodically – features characteristic of a specific syndrome may become more apparent with age and new genetic syndromes are being described.
Developmental Pediatrics (see Services below for relevant providers)
Developmental pediatrics may be helpful in periodically evaluating a child's developmental progress and determine an ongoing plan for educational needs.
Child Psychology (see Services below for relevant providers)
Periodic visits with child psychology may be helpful in following progress and monitoring for associated problems such as ADHD that, if treated, may help educational progress.
Child Psychiatry (see Services below for relevant providers)
If mental health problems, such as depression, are suspected, or if a child is having difficult to manage behavior problems, consider a referral to child psychiatry.
Clinical Classification
Classification of ID/MR into Borderline, Mild, Moderate, Severe, and Profound categories is detailed on Intellectual disability/mental retardation - classification.Resources
Information & Support
For Professionals
MR (GeneTests)
Information about available tests for known genetic conditions that result in ID/MR.
Mental Retardation, CDC review
Information about ID and links to associated content from the Centers for Disease Control (CDC).
Developmental disabilities information (ddhealthinfo.org)
Information and links for families and professionals on developmental disabilities and associated medical condtions. This
site is funded by the California Department of Developmental Services and coordinated by the University of California San
Diego, School of Medicine.
Developmental disabilities information (dbpeds.org)
Type developmental disabilities in the search box on this website to find information about developmental disabilites and
links to associated sites.
For Parents and Patients
Support
Arc of the United States
Publishes A Family Handbook on Future Planning which is a guide to help families develop a future plan that provides personal,
financial, and legal protections for their children after the parents either die or can no longer provide care or support.
The book is free and available on their website.
Arc of Utah
An organization of and for people with mental retardation and related developmental disabilities and their families. It is
devoted to promoting and improving supports and services for people with mental retardation and their families. The association
also fosters research and education regarding the prevention of mental retardation in infants and young children.
Mental Retardation Association of Utah (MRAU)
This non-profit supports volunteer activities; provides information and referral services; provides education, newsletters,
and conferences; and helps families with guardianship information forms.
Developmental Delay/Mental Retardation resources
A listing of international resources related to ID/MR, compiled by the University of Kansas Medical Center's Genetics Education
Center.
General
Developmental disabilities information (ddhealthinfo.org)
Information and links for families and professionals on developmental disabilities and associated medical condtions. This
site is funded by the California Department of Developmental Services and coordinated by the University of California San
Diego, School of Medicine.
Mental Retardation (MedlinePlus Encyclopedia)
Overview of mental retardation with links to much more information; from the National Library of Medicine and National Institutes
of Health.
Developmental Disabilities (MedlinePlus)
Comprehensive compilation of reliable links to information about developmental disabilities and intellectual disability/mental
retardation; from the National Library of Medicine and National Institutes of Health.
520 KB)
Services
Pediatric Medical Genetics
See all Pediatric Medical Genetics services providers (4) in our database.
Sleep Studies/Polysomnography
See all Sleep Studies/Polysomnography services providers (6) in our database.
Special Needs Schools, Other
See all Special Needs Schools, Other services providers (22) in our database.
For other services related to this condition, browse our Services categories or search our database.
Studies
Mental Retardation (clinicaltrials.gov)
Many clinical trials are underway related to mental retardation. Some may be relevant and of interest to your patients.
Authors
| Author: | Lynne M Kerr MD, PhD, 7/2008 |
| Reviewing Author: | Chuck Norlin MD, 7/2008 |
| Content Last Updated: | 5/2009 |
Page Bibliography
American Psychiatric Association.
Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR (Text Revision).
4th edition (June 2000) ed. Washington, DC: American Psychiatric Association;
2000.
0890420254
National Center for Health Statistics (NCHS) and the Centers for Medicare and Medicaid Services .
International Classification of Diseases, Ninth Revision, Clinical Modification.
10th revision ed. Various Publishers;
2007.
http://icd9cm.chrisendres.com/