How common are developmental delays and mental retardation?

It is extremely difficult to say for sure how many children have developmental delays. Sometimes a child might be considered “developmentally delayed” for only a short time before they catch up to other children; other children may be considered “developmentally delayed” from shortly after birth and this might never change. It is easier to say how many people have mental retardation since this is a permanent condition. About 2-3% of the general population is mentally retarded. Of the 2-3% of the population with mental retardation, about 85 to 90% are mildly retarded, 5-15% are moderately retarded, and the remaining 5% are severely or profoundly retarded.

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The three general categories of mental retardation:

Children with mild mental retardation (IQs in the 50-70 range) may not even seem to have a problem until they are in school when their learning difficulties will become more noticeable. They will learn at a slower rate and need additional help in school, but they will be able to read and write. They are likely to be able to learn to at least the fourth grade level. They may have difficulty getting along with other children because they may not recognize the social cues children use to communicate with each other. Some children with mild mental retardation seem to lack "common sense" and may be impulsive or show poor judgment. In addition to being taught some of the typical classroom subjects, children with mild mental retardation may also benefit from being taught how to conduct themselves in personal and social situations. Adults who have mild mental retardation usually work at vocational-type jobs. They can be successful at their jobs; they may marry; and they may not be recognized as having any disability. However, they may need help or guidance from others when faced with particularly difficult situations.

Children with moderate mental retardation (IQs from 36-50) will be slow to develop basic skills such as walking and talking; their disabilities are often recognized before they enter school. Some children with moderate mental retardation can learn to read and write at the primary level (kindergarten to third grade); most can be taught to recognize important words and phrases such as "stop" and "don't walk". Most moderately retarded persons learn to be independent in familiar surroundings, and to provide personal care for themselves. As adults, they can work in sheltered situations with extensive supervision. Supervised group homes can also be an enjoyable setting for teens and adults with moderate mental retardation; these individuals can be helpful to others and sociable, yet they will need guidance and supervision throughout their lives.

Children with severe mental retardation (IQs from 20-35) will be dependent upon others for much of their care for all of their lives. Many can learn to talk or to communicate in other ways, and can help to care for their personal needs. Their learning problems are often complicated by severe physical disabilities. Though they need care and supervision, they can enjoy simple activities and the company of other people. Children with an IQ of 20 or below are considered to have profound mental retardation; these children are able to participate only in the simplest of activities and completely depend upon others for all of their needs. They function at the level of an infant or very young child, and their life spans are typically significantly shortened. Less than 2% of people with mental retardation are this profoundly disabled.

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What causes developmental delays and mental retardation?

There are many reasons why developmental delays happen – premature babies may need time to catch up with other babies; a chronic illness or a physical disability might prevent a child developing on the same schedule as other children; a child who is in a setting where there is little interaction with others may not be getting enough stimulation to allow for normal development; etc. Children with developmental delays may also have permanent conditions that prevent them from ever being able to catch up with other children.

Mental retardation also has many possible causes. Mental retardation may be due to something that a child is born with, such as a metabolic disorder (such as hypothyroidism) or a genetic problem (such as Down Syndrome or Fragile X). It may be due to something that happened while the mother was pregnant, such as an infection with a virus (such as rubella or cytomegalovirus) or a physical injury to the unborn child. Mental retardation may also be due to something that happens when the child is born such as an infection or injury that the child gets during delivery, or to being born prematurely. It may also be due to the child having breathing problems or a brain injury shortly after being born. Sometimes, mental retardation may be due to something that happens later in the child’s life. Children may suffer from mental retardation due to an illness that infects their brains (such as meningitis or encephalitis), a head injury, or a ‘near drowning’ accident. Sometimes mental retardation may be the result of physical abuse to the child, or to severe neglect. About 30% of all cases of mental retardation have no known cause, or seem to be the result of a number of different causes working together.

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What do I need to do if I think my child might have developmental delays?

If you are concerned about your child, please do not wait to seek help. Parents are usually the first to suspect that their child has a problem, and they need to tell their child’s health care provider about their concerns. Occasionally, an alert health care provider may first observe a potential problem during a medical examination and then tell the parents about it. When there is a potential problem, a health care provider will refer the child to specialists for further evaluations. These evaluations could include vision and hearing testing, careful observation of the child's behaviors and skills in all areas of development (communication, coordination, thinking, social and emotional behavior, and self-care skills such as feeding and toileting) and/or formal psychological, psychiatric, or developmental assessments. These additional tests may provide extremely useful information about the type and severity of the problem. Unfortunately, the complete process of diagnosing a child may take a long time. Parents need to also understand that, even with the best evaluations, not all children will receive a definite name for their condition. Parents need to be included throughout the entire evaluation process because they understand their child better than anyone else. Children of any age can be evaluated to see if they have developmental delays.

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What can I do to help my child who has developmental delays and/or mental retardation?

Once a young child (from birth to three years of age) is recognized to have a potential developmental problem, he or she may be eligible to receive Early Intervention services through a state agency. Early Intervention is very important for children with developmental delays; even very young babies can benefit. Early Intervention services can include physical, occupational, play, or speech and language therapy, vision and hearing training, and preschool activities adapted to the needs of the child. Services may be provided at home, in a center, or at both places. Such services help to prepare children for school while making learning as fun as possible. They give specific ideas (and emotional support) to parents who want to help their children but aren't sure how to do it. Most important, these services will give children greater self-confidence and encourage them to be interested in learning – traits that should help them to better succeed in an educational setting. From three to five years of age, children with developmental delays may be eligible to attend special education preschool.

Most children will not be formally diagnosed with mental retardation until they are at least five years of age. Children who have mental retardation often need to receive additional help and/or special education services that are appropriate for them while they are in school, and they may need assistance throughout their lives. Parents need to be involved as part of the team that sets up their child’s special education services.

Being a parent can be stressful; if you are a parent to a child with developmental delays and/or mental retardation, it can be even more stressful. Seek out other parents whose children have problems similar to those of your own child; they can give you insight and support. Find ways to give yourself some time off; train responsible adults or teens so that they can help share in the care of your child. (Remember that while brothers and sisters can help, they also have their own lives to lead.) Honest and open communication between family members is essential. It is also important to communicate honestly with health care providers, therapists, and teachers. Be a part of the team of people who work with your child, but don't let therapies, special education, and medical care take over your family’s life. Ask questions about any aspect of your child’s care that you may not agree with or do not understand. You and your child deserve answers. Trust your instincts about your child. Most importantly, be an advocate for your child in every setting as you are the best advocate he or she will ever have!

Here are some things to keep in mind when working with developmentally delayed children and children with mental retardation:

1. Choose toys and activities carefully. With young children, choose toys and activities that the child will be able to enjoy based on their current developmental skills; do not choose toys and activities based only on the child’s age because these might just frustrate the child. Play with only one or a few things at a time so you do not overwhelm the child; keep other interesting things out of sight while you play. Stop when you recognize that the child is bored or overwhelmed. Don't hurry! Allow plenty of time for the child to react because he may need extra time to respond. Watch for small signs of interest, such as a pause or brief smile. As children get older and develop further, consider the child’s overall development when choosing toys and activities. An older child who is disabled may prefer toys and activities that appear to be more like those of their peers and less like “baby toys”.
   
   
2. Teach new things in small steps. Work slowly, especially when teaching young children, and use lots of "show and tell". Let the child know whether he is on the right track, give lots of sincere praise, and tell the child specifically what you are praising. Keep your requests and explanations as short and straightforward as possible. Give the child lots of chances to experiment and practice as they learn something new. For older children, you might want to write down the steps involved with a new task or show the child pictures of each step to help them learn.
   
   
3. Teach activities that are meaningful to the child. Choose activities that the child is capable of learning and that will be useful for that child. Useful activities are those that will help the child to do better in their home and/or at school. For example, learning how to use a communication device that can help a child to “speak” would be very useful for a child who cannot speak. Without a way to communicate with others, that child would have difficulties succeeding at both home and school.
   
   
4. Teach the child what is acceptable behavior. Every child needs to know what behaviors are acceptable and what are not. Set and enforce clear limits for your child; this will help the child feel more secure, and free to do what he wants within the limits you have set. The limits that are set for a child with developmental delays or mental retardation should be based on their developmental skills and abilities; they may not be able to understand or follow rules you would usually give to children of their same age. Be sure that everyone who lives and works with the child knows what his limits are and how they are to be enforced.
   
   
5. Treat each child as an individual. Everyone has a different personality, including children with developmental delays and/or mental retardation. Get to know your child. Learn how to use your child's interests and personality to your advantage. Remember that what works well for one child (or parent) may not work for another. Treat your child with respect and affection, and insist that others who live and work with the child do the same.

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Where can families go for help?

Here are a few places to get started. You may also wish to go to Where Can I Get Help? for more resources.

Your doctor or public health nurse can put you in touch with programs that provide assessment and treatment (or referrals for treatment). By federal law, every state must provide early intervention services for eligible children from birth through two years, special education preschool services for eligible children from three to five years, and special education services for eligible school age children. In Utah, the Utah Department of Health’s Division of Community & Family Health Services has the Children with Special Health Care Needs program (801-584-8284 or 1-800-829-8200) and the Baby Watch/Early Intervention program (1-800-961-4226). Both programs serve children and their main offices are located at 44 Medical Drive, Salt Lake City, Utah 84114. Call your local school district or the Utah State Office of Education (801-538-7500) for information about special education services.

Every state (and many cities and counties in individual states) has its own Association for Retarded Citizens (ARC). The ARC of Utah is located at 155 South 300 West, Salt Lake City, Utah 84101 (801-364-5060 or 1-800-371-5060).

There are many books and pamphlets available for parents (See our Where Can I Get Help? page for a number of web sites). Your local library may have some useful materials (be sure that they are recently published); inquire at the information or reference desk. Many libraries subscribe to The Exceptional Parent magazine, an excellent resources for parents of children with all disabilities. To get a subscription of your own contact The Exceptional Parent at 65 East Route 4, River Edge, NJ 07661 or by telephone (201-489-4111). The magazine publishes a yearly listing of all national organizations involved with disabilities, and an annual directory or resources for communication aids and other useful equipment.

The National Organization for Rare Disorders (NORD) can give you information about many of the disorders that are associated with developmental delays and/or mental retardation and the support groups associated with them (203-744-0100 or 1-800-999-6673). This information is also available in Utah through the University of Utah Medical Genetics program, 50 North Medical Drive, Salt Lake City, Utah 84112 (801-581-8943).

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