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Intellectual Disability

Introduction

Here you’ll find answers to some of the questions that parents often have about this condition. Additional resources are listed at the bottom of the page. Diagnosis and management information can be found in the Intellectual Disability module, which is written for primary care clinicians but also may be of help to parents and family members.

What is intellectual disability and what causes it?

Intellectual disability (ID) is a term used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of himself or herself, and social skills. These limitations will cause a child to learn and develop more slowly than a typical child. Children with intellectual disabilities may take longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. They are likely to have trouble learning in school. They will learn, but it will take them longer. There may be some things they cannot learn.
There are many causes of intellectual disability. The most common are:
  • Genetic conditions; examples are Down syndrome, fragile X syndrome, and phenylketonuria (PKU)
  • Problems during pregnancy
  • Problems at birth
  • Health problems such as brain infections or severe systemic infection
  • Toxic exposures

What are the symptoms of intellectual disability?

Symptoms in infants and toddlers include delays in crawling, sitting, walking, talking, and other developmental milestones. Symptoms in young children include school problems, learning delays, and the inability to keep up with peers.

How is it diagnosed?

To confirm intellectual disability in a child who is showing clinical signs, the child is referred to a psychologist for testing of intelligence and adaptive functioning. Intellectual functioning, or IQ, is measured by a test called an IQ test. The average score is 100. People scoring below 70 are said to have an intellectual disability. Adaptive behavior is measured by comparing what the child can do in comparison to other children of his or her age can do including social abilities, communication skills, and skills of daily living.

What is the prognosis?

Measures of intellect and adaptive behavior are somewhat predictive of eventual ability to live independently. For instance, individuals with mild to moderate ID should become relatively self-sufficient with appropriate family and community support. Individuals with severe and profound ID will need a great deal of support and do not usually live independently. For a more specific answer, ask your primary care clinician.

What is the risk for other family members or future babies?

This will depend on the underlying cause for the intellectual disability in your child.

What treatments/therapies/medications are recommended or available?

While there is no treatment for ID, some of the conditions causing it (e.g., metabolic errors or hypothyroidism) can be treated. Much can be done to limit secondary disabilities and to optimize functional abilities.

Where can I get information on how to provide for my child when I am no longer able to provide care?

Providing for a child with ID after the parents are no longer able can be tricky and families are encouraged to consult a lawyer with expertise in this area. Financial resources should not be left directly to the individual with special needs as this may disqualify him or her from programs such as Medicaid and SSI. Also, see A Family Handbook on Future Planning (ARC).

How are autism and intellectual disability related?

Both autism and intellectual disability are complex conditions arising from a number of causes. Autism refers to a condition where social functioning and communication are abnormal in varying degrees, whereas intellectual disability refers to defects in intellectual functioning. Although they will sometimes occur together, it is also possible for each to occur independently.

Does the term developmental delay mean the same thing as intellectual disability?

IQ testing is not completely accurate until a child is 4-5 years of age, so the term developmental delay is used until formal testing can be performed. Often, children with developmental delay are later diagnosed with intellectual disability and are not expected to "catch up" with their peers, although this may not always be clear to families. If there are questions about how these terms are being used in relation to your child, ask one of your providers.

What is the life expectancy of my child with intellectual disability?

This is a difficult question to answer because there are varying degrees of intellectual disability and many causes. For a more specific answer, ask your primary care clinician. In general, children with mild or moderate ID have normal life expectancies, whereas children with severe and profound ID may have associated medical conditions that lead to a shorter life span.

Resources

Information & Support

Where can I go for more information?

For Parents and Patients

Support

The Arc
A national, community-based organization advocating for people with intellectual and developmental disabilities and their families.

Mutual Respect, Advocacy, and Understanding of Utah (MRAU)
Provides advocacy, education, newsletters, and conferences related to ID; helps families with guardianship information.

Center for Parent Information and Resources
A large resource library related to children with disabilities. Parent Centers in every state provide training to parents of children with disabilities.

General

Developmental Disabilities Information (ddhealthinfo.org)
Information and resources about developmental disabilities for clinicians that includes clinical practice considerations for related conditions and information about related issues (communication, dental, mental health, CAM); University of California San Diego, School of Medicine.

Intellectual Disability (MedlinePlus)
Overview of the causes, symptoms, and treatment of ID; from the National Library of Medicine and National Institutes of Health.

Developmental Disabilities (MedlinePlus)
Reliable links to information about developmental disabilities and ID; from the National Library of Medicine and National Institutes of Health.

Learn the Signs. Act Early (CDC)
A CDC program to address the importance of early identification of developmental delay and disability. Early intervention (before school age) can have a significant impact on a child’s ability to learn new skills, as well as reduce the need for costly interventions over time; Centers for Disease Control and Prevention.

EP Magazine (Exceptional Parent)
A monthly publication that provides practical advice, emotional support, and up-to-date educational information for people with disabilities.

Financing Your Child's Healthcare (MHP)
Information, services, and resources that may help offset some of the medical costs of caring for your child with special health care needs; Medical Home Portal.

A Family Handbook on Future Planning (ARC)
Helps families develop a plan that provides personal, financial, and legal protections for their children with cognitive, intellectual, or developmental disabilities after the parents either die or can no longer provide care; The Arc.

Patient Education

Intellectual Disability Fact Sheet (English & Spanish) (CDC)
One-page fact sheet for families who may be concerned that their child has intellectual disability; Centers for Disease Control and Prevention.

Tools

Care Notebook (MHP)
The care notebook helps keep track of appointments, resources, labs, medications, tests, care providers, and more. Download the complete notebook, compile in your own binder, or download separate forms; Medical Home Portal.

Forms for Education
Descriptions and links to forms that can be adapted for states and Local Education Authorities (LEAs), usually school districts, or charter schools. Topics include evaluation and service recommendations, special dietary needs, medication administration, and authorization to release information; Medical Home Portal.

Sleep History Questionnaire (PDF Document 20 KB)
Sleep log and 1-page questionnaire about sleep routines and behavior.

Services

Developmental Evaluation

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Developmental Pediatrics

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Early Intervention Programs

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Estate & Future Planning

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General Dentistry for Children

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Guardianship

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Gynecology (Ped/Adol, Special Needs)

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Neuropsychology

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Nutrition/Dietary

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Pediatric Dentistry

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Pediatric Genetics

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Pediatric Metabolic Genetics

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Pediatric Neurology

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Pediatric Ophthalmology

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Pediatric Otolaryngology

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Pediatric Physical Medicine & Rehab

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Pediatric Sleep Medicine

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Preschool/Early Childhood Education

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Psychiatrist, Child-18

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Psychologist, Child-18

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School Districts

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Services for People with Disabilities

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Sleep Studies/Polysomnography

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Social Work

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Special Needs Schools, Other

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State Disability Agencies

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For other services related to this condition, browse our Services categories or search our database.

Authors

Author: Lynne M Kerr, MD, PhD - 3/2012
Reviewing Author: Meghan Candee, MD - 4/2015
Compiled and edited by: URLEND Trainees, 2011-2012 - 3/2012
Content Last Updated: 12/2015

Funding/Support

The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.