Diagnosing Intellectually Disabilities
Doctors have found many causes of Intellectually Disabilities. The most common are:
- Genetic conditions. Sometimes Intellectually Disabilities is caused by abnormal genes inherited from parents, errors when genes combine, or other reasons. Examples of genetic conditions are Down syndrome, fragile X syndrome, and phenylketonuria (PKU).
- Problems during pregnancy. Intellectually Disabilities can result when the baby does not develop inside the mother properly. For example, there may be a problem with the way the baby’s cells divide as it grows. A woman who drinks alcohol or gets an infection like rubella during pregnancy may also have a baby with Intellectually Disabilities.
- Problems at birth. If a baby has problems during labor and birth, such as not getting enough oxygen, he or she may have Intellectually Disabilities.
- Health problems. Diseases like whooping cough, the measles, or meningitis can cause Intellectually Disabilities. Intellectually Disabilities can also be caused by extreme malnutrition (not eating right), not getting enough medical care, or by being exposed to poisons like lead or mercury.
Intellectually Disabilities is not a disease. You can’t catch Intellectually Disabilities from anyone. Intellectually Disabilities is also not a type of mental illness, like depression. There is no cure for Intellectually Disabilities. However, most children with Intellectually Disabilities can learn to do many things. It just takes them more time and effort than other children.
How is Intellectually Disabilities Diagnosed?
Intellectually Disabilities is diagnosed by looking at two main things. These are:
- The ability of a person's brain to learn, think, solve problems, and make sense of the world (called IQ or intellectual functioning); and
- Whether the person has the skills he or she needs to live independently (called adaptive behavior, or adaptive functioning). Intellectual functioning, or IQ, is usually measured by a test called an IQ test. The average score is 100. People scoring below 70 to 75 are thought to have Intellectually Disabilities. To measure adaptive behavior, professionals look at what a child can do in comparison to other children of his or her age. Certain skills are important to adaptive behavior.
- Daily living skills, such as getting dressed, going to the bathroom, and feeding one’s self.
- Communication skills, such as understanding what is said and being able to answer.
- Social skills with peers, family members, adults, and others.
To diagnose Intellectually Disabilities, professionals look at the person’s mental abilities (IQ) and his or her adaptive skills. Both of these are highlighted in the definition of Intellectually Disabilities provided between the lines below. This definition comes from the Individuals with Disabilities Education Act (IDEA). The IDEA is the federal law that guides how schools provide early intervention and special education and related services to children with disabilities.
Providing services to help individuals with Intellectually Disabilities has led to a new understanding of how we define Intellectually Disabilities. After the initial diagnosis of Intellectually Disabilities is made, we look at a person’s strengths and weaknesses. We also look at how much support or help the person needs to get along at home, in school, and in the community. This approach gives a realistic picture of each individual. It also recognizes that the “picture” can change. As the person grows and learns, his or her ability to get along in the world grows as well.
IDEA’s Definition of “Intellectually Disabilities”
Our nation’s special education law, the IDEA, defines Intellectually Disabilities as . . .
“. . . significantly subaverage general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance.”
[34 Code of Federal Regulations §300.7(c)(6)]
How Common is Intellectually Disabilities?
As many as 3 out of every 100 people in the country have Intellectually Disabilities (The Arc, 2001). Over 614,000 children ages 6 to 21 have some level of Intellectually Disabilities and need special education in school (Twenty-third Annual Report to Congress, U.S. Department of Education, 2001). In fact, 1 out of every 10 children who need special education has some form of Intellectually Disabilities.
What Are the Signs of Intellectually Disabilities?
There are many signs of Intellectually Disabilities. For example, children with Intellectually Disabilities may:
- Sit up, crawl, or walk later than other children;
- Learn to talk later, or have trouble speaking,
- Find it hard to remember things.
- Not understand how to pay for things.
- Have trouble understanding social rules.
- Have trouble seeing the consequences of their actions.
- Have trouble solving problems, and/or
- Have trouble thinking logically.
About 87% of people with Intellectually Disabilities will only be a little slower than average in learning new information and skills. When they are children, their limitations may not be obvious. They may not even be diagnosed as having Intellectually Disabilities until they get to school. As they become adults, many people with mild retardation can live independently. Other people may not even consider them as having Intellectually Disabilities.What About School?
A child with Intellectually Disabilities can do well in school but is likely to need individualized help. Fortunately, states are responsible for meeting the educational needs of children with disabilities. For children up to age three, services are provided through an early intervention system. Staff work with the child’s family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child’s unique needs. It also describes the services the child will receive to address those needs. The IFSP will emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with Intellectually Disabilities. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income. In some states, early intervention services may be at no cost to parents. For eligible school-aged children (including preschoolers), special education and related services are made available through the school system. School staff will work with the child’s parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP. It describes the child’s unique needs and the services that have been designed to meet those needs. Special education and related services are provided at no cost to parents. Many children with Intellectually Disabilities need help with adaptive skills, which are skills needed to live, work, and play in the community. Teachers and parents can help a child work on these skills at both school and home. Some of these skills include:
- communicating with others.
- taking care of personal needs (dressing, bathing, going to the bathroom).
- health and safety.
- home living (helping to set the table, cleaning the house, or cooking dinner).
- social skills (manners, knowing the rules of conversation, getting along in a group, playing a game).
- reading, writing, and basic math and as they get older, skills that will help them in the workplace.
Supports or changes in the classroom (called adaptations) help most students with Intellectually Disabilities. Some common changes that help students with Intellectually Disabilities are listed below under “Tips for Teachers.” The resources below also include ways to help children with Intellectually Disabilities.
Tips for Parents
- Learn about Intellectually Disabilities. The more you know, the more you can help yourself and your child. See the list of resources and organizations at the end of this publication.
- Encourage independence in your child. For example, help your child learn daily care skills, such as dressing, feeding him or herself, using the bathroom, and grooming.
- Give your child chores. Keep his/her age, attention span, and abilities in mind. Break down jobs into smaller steps. For example, if your child’s job is to set the table, first ask him/her to get the right number of napkins. Then have him/her put one at each family member’s place at the table. Do the same with the utensils, going one at a time. Tell him/her what to do, step by step, until the job is done. Demonstrate how to do the job. Help her when she needs assistance. Give your child frequent feedback. Praise your child when he or she does well. Build your child’s abilities.
- Find out what skills your child is learning at school. Find ways for your child to apply those skills at home. For example, if the teacher is going over a lesson about money, take your child to the supermarket with you. Help him count out the money to pay for your groceries. Help him count the change.
- Find opportunities in your community for social activities, such as scouts, recreation center activities, sports, and so on. These will help your child build social skills as well as to have fun.
- Talk to other parents whose children have Intellectually Disabilities. Parents can share practical advice and emotional support. Call NICHCY (1.800.695.0285) and ask how to find a parent group near you.
- Meet with the school and develop an educational plan to address your child’s needs. Keep in touch with your child’s teachers. Offer support. Find out how you can support your child’s school learning at home.
- Learn as much as you can about Intellectually Disabilities. The organizations listed at the end of this publication will help you identify specific techniques and strategies to support the student educationally. We’ve also listed some strategies below.
- Recognize that you can make an enormous difference in this student’s life! Find out what the student’s strengths and interests are, and emphasize them. Create opportunities for success.
- If you are not part of the student’s Individualized Education Program (IEP) team, ask for a copy of his or her IEP. The student’s educational goals will be listed there, as well as the services and classroom accommodations he or she is to receive. Talk to specialists in your school (e.g., special educators), as necessary. They can help you identify effective methods of teaching this student, ways to adapt the curriculum, and how to address the student’s IEP goals in your classroom.
- Be as concrete as possible. Demonstrate what you mean rather than just giving verbal directions. Rather than just relating new information verbally, show a picture. And rather than just showing a picture, provide the student with hands-on materials and experiences and the opportunity to try things out.
- Break longer, new tasks into small steps. Demonstrate the steps. Have the student do the steps, one at a time. Provide assistance, as necessary.
- Give the student immediate feedback.
- Teach the student life skills such as daily living, social skills, and occupational awareness and exploration, as appropriate. Involve the student in group activities or clubs.
- Work together with the student’s parents and other school personnel to create and implement an educational plan tailored to meet the student’s needs. Regularly share information about how the student is doing at school and at home.