Intellectual Disability

________________________________________________________________________

KEY POINTS

• Children with an intellectual disability (ID) have intelligence that is below the normal range, which means they are slower at learning to walk, feed themselves, or talk.
• Treatment focuses on educational, behavioral, and self-help skills.
• Community resources are very important. To find these services, talk with your healthcare provider or county health department.

________________________________________________________________________

What is an intellectual disability?

Children with an intellectual disability (ID) have intelligence that is below the normal range, which means they are slower at learning to walk, feed themselves, or talk. They may not be able to read, write, solve problems, or do math past the 3rd to 6th grade level, if at all. Children with ID may also be called developmentally disabled.

ID causes trouble with things such as:

• Being able to communicate and understand others, such as talking, writing, or following directions
• Taking care of themselves or being able to live alone
• Homemaking activities such as cooking and cleaning
• Social skills such as the give-and-take of dealing with people and controlling emotions
• Being able to get and keep a job

What is the cause?

Many problems can cause ID. In about one third of the people with ID, the cause is unknown. Intellectual disability is more common in males than in females.

Genetic problems are passed from parents to children through their genes. Genes are inside each cell of the body. They contain the information that tells the body how to develop and work. Over 500 genetic diseases have been linked to ID, such as:

• Fragile X Syndrome, which keeps the body from making a certain protein
• Down Syndrome, which causes problems with how the brain and body develop
• PKU (phenylketonuria), which keeps the body from breaking down an amino acid (a building block for protein)

ID may be caused during pregnancy if the mother:

• Uses drugs or drinks alcohol
• Has illnesses such as syphilis or German measles (rubella)
• Is exposed to toxic chemicals

Loss of oxygen to the baby for a long time during birth, such as when the umbilical cord is wrapped around the neck, may cause brain damage that results in ID.

Problems during childhood may lead to ID:

• Diseases such as whooping cough, measles, and meningitis
• A serious head injury or near drowning
• Contact with lead, mercury, and some chemical fertilizers
• Poor diet and neglect over a long time

What are the symptoms?

Symptoms usually start before age 18. Symptoms depend on how severe the intellectual disability is.

Most children with ID have a mild form. Preschool-age children with mild ID often do not seem very different than other children. However, they are slower than most children to learn to walk, feed themselves, and talk. Children with mild ID can learn reading, writing, and math skills up to the 3rd to 6th grade level. They may need extra help and support when they feel stressed.

Preschool-age children with a more severe ID have delays in walking and using their arms and hands, and limited communication skills. With therapy, these children can learn some basic skills such as bathing and feeding themselves by the teen years. As they grow older they can usually walk. Many can learn to do simple tasks with close supervision.

Children with the most severe kind of intellectual disability often have other medical problems, such as trouble swallowing or moving. They show basic emotions and with therapy, may be able to use their legs, hands, and mouth. Many need nursing care. Most need to be supervised closely during all waking hours.

How is it diagnosed?

Newborns in the US are tested soon after birth, but different states test for different conditions. Some conditions, such as phenylketonuria (PKU), can cause intellectual disability and other problems if babies are not treated soon after birth. Children who have these conditions can be treated with medicine or put on a special diet.

As your child grows, tests are used to measure how well your child is developing compared to other children of the same age. ID is almost always diagnosed in childhood. Mild ID may not be diagnosed until a child starts school.

Both intelligence and life skills should be tested every few years to check the progress made from education and therapy. A psychologist or developmental specialist does the testing. Tests may include:

• Thinking and general knowledge
• Word use and communication
• Making and copying symbols or pictures
• Putting puzzles together
• Self-care skills such as being able to shop, cook, and get dressed
• Social skills

How is it treated?

Treatment focuses on educational, behavioral, and self-help skills.

Most states offer Early Intervention Programs for children aged 0 to 3 years with ID. Some states also offer special developmental preschool classes to children between the ages of 3 and 5 years who have special needs. By law, all states must provide special education classes for children with ID through 21 years of age. The school must develop an Individual Educational Plan (IEP) for each child who needs special education. This plan includes:

• Educational objectives
• Class placement
• A plan to check progress
• Any other special services, such as therapy or transportation

Both the parent and the school must agree to the plan.

Parents of children with ID often hear of new and different treatments through the media, internet, or friends. Your provider can help you decide if these treatments could help or harm your child.

Where can I get help?

When someone in the family has an intellectual disability, everyone in the family can feel grief, anger, guilt, and many other emotions. Many families find that counseling can help.

You can get help and training from many government agencies and private programs. All states have special programs for people with ID. The programs for adults usually start after age 21 when schools no longer provide services. Job training and coaching programs are available through each state's Division of Vocational Rehabilitation. Private organizations like Goodwill and The ARC also offer services in many locations.

The Supplemental Security Income (SSI) program may provide benefits for some people also.

Community resources are very important. To find these services, talk with your healthcare provider or county health department:

• Social workers find and organize help, including possible financial aid.
• Home healthcare agencies provide the services of nurses, medical social workers, and therapists. They also provide home health aides for personal care.
• Out-of-home services include mental health services, transportation, and nursing facilities.

Get immediate help if someone with ID becomes violent or starts to harm himself or herself. Sometimes people with ID bang their heads or other body parts against things. You will need to help them move to a safe place or remove items around them so they don't hurt themselves.

You can learn more from:

• The ARC
  http://www.thearc.org
  800-433-5255
• Social Security
  https://www.ssa.gov/disabilityssi/ssi.html
  800-772-1213