Answers to questions families often have about caring for their child with intellectual disability and global developmental delay

Intellectual disability (ID) is a term used when a person has certain limitations in mental functioning and in skills such as communicating, self care, 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 need extra help with 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
• Premature birth
• Problems at birth
• Health problems such as brain infections or severe systemic infection
• Toxic exposures
• Metabolic errors
• Congenital hypothyroidism

Symptoms in infants and toddlers are: delays in crawling, sitting, walking, talking, and other developmental milestones. Symptoms in young children are: learning delays, difficulties with school, and not keeping up with peers’ development.

To confirm intellectual disability in a child who is showing clinical signs, the child is referred to a psychologist for an IQ test, which measures intellectual functioning. The average score is 100. Children scoring below 70 are said to have an intellectual disability. Adaptive behavior (life skills) is measured by looking at what the child can do in comparison to other children of his age, including social skills, communication skills, and skills of daily living.

Measures of intellect and adaptive behavior may predict eventual ability to live independently. For example, people with mild to moderate ID should become relatively self-sufficient with appropriate family and community support. People with severe and profound ID will need a great deal of support and do not usually live independently. Although these measures are somewhat predictive, many people with ID have accomplished much more than originally expected. For a more specific answer, ask your child’s primary care doctor.

That would depend on the underlying cause your child’s intellectual disability. For example, some genetic conditions may occur in siblings, whereas causes of ID like premature birth or toxic exposures are unlikely to. Talk with your child’s primary care doctor or a genetic counselor for more information.

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

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 individuals with special needs as this may disqualify them from programs such as Medicaid and SSI (see Estate Planning Trusts and Accounts). Also, see A Family Handbook on Future Planning (ARC).

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 affected in varying degrees, whereas intellectual disability refers to deficits in intellectual functioning. Although autism and ID will sometimes occur together, they can occur independently.

IQ testing may not be very 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 at that point are not expected to "catch up" with their peers, although this may not always be clear to families or professionals. If there are questions about how these terms are being used about your child, ask your child’s primary care doctor.

This is a difficult question to answer because there are different degrees of intellectual disability and many causes. For a more specific answer, ask your child’s primary care doctor. Children with mild or moderate ID usually have normal life expectancies while children with severe and profound ID may sometimes have associated medical conditions that could lead to a shorter life span.