HIV/AIDS and Mental Retardation

by Jo Anne T. Kowalski, R.N., Ed. D.
Mid-Ohio Valley AIDS Task Force, Parkersburg, W.V.

AIDS stands for Acquired Immune Deficiency Syndrome. It is a disease caused by the Human Immunodeficiency Virus (HIV), sometimes referred to as the AIDS virus. This virus attacks the T-cells, which are part of the body's immune system. The loss of T-cells prohibits the body from fighting off bacteria that it is normally able to destroy before they cause disease. The type of diseases that HIV infection causes are commonly referred to as opportunistic infections. Some examples of these infections are, Pneumocystic carinii pneumonia (PCP), Kaposi's sarcoma (KS), and Candidiasis of the esophagus, trachea, bronchi or lungs. These diseases often prove fatal to the person with AIDS.

A person who is infected with the HIV virus is considered HIV positive. Since HIV may live in a person's body for years before causing any illness, an HIV positive person may look and feel healthy for a long time. In fact, unless people get tested for the HIV antibody, they may not know that they are infected. Once a person is infected with HIV, he is always infected. As yet, there is no cure for AIDS.

The HIV/AIDS epidemic appeared in the 1970s and 1980s. This disease has already infected millions of people, and the numbers are still rising.

How do people become infected with HIV?

This virus is fragile and does not live outside the human body for very long. It prefers to live in blood, semen, and vaginal secretions. It is much less likely to be infectious when it is found in other body fluids like tears, saliva, sweat, and urine.

There are three ways for a person to become infected with HIV. First, a person can become infected by having unprotected sexual intercourse with an HIV positive person. The virus may be transmitted in semen, vaginal secretions, or any blood that may be present during sexual activity. Contact with these body fluids during any act of oral, vaginal or anal sex may result in HIV infection.

Second, an uninfected person may become infected by exposure to the blood of an HIV positive person. This method of transmission is often referred to as blood to blood transmission and includes sharing needles and syringes to inject drugs, tattooing, ear piercing done in an unsanitary setting, biting and scratching. Other modes of blood to blood transmission include sharing personal care items that may have blood on them and performing any activities that would expose an open wound to blood.

Third, babies of HIV infected women may be born with the infection. HIV can be transmitted before or during birth. This is often referred to as vertical transmission. If the woman breast feeds her baby, she may also transmit HIV during feeding.

What about people with mental retardation and HIV?

The HIV/AIDS epidemic also impacts people with mental retardation. Adults with mental retardation may be the victims of sexual abuse and sexual exploitation. In the age of safer sex, some people refuse to take precautions. Sometimes, their sexual partners are adults with mental retardation. One study identified 45 adults with mental retardation and advanced HIV infection or AIDS in 44 states (Marchetti, et al., 1989), but it is estimated that hundreds of such cases already exist. People living in group settings, as well as people living independently, are at risk.

What about testing?

When a person is infected with HIV, his or her immune system begins producing antibodies to HIV. Blood tests for HIV antibodies are widely available throughout the United States. These blood tests are not "AIDS tests." The two tests that are used to detect the presence of HIV antibodies are the ELISA and the Western Blot. The ELISA test is generally referred to as the screening test, and, if it is "positive," then the Western Blot test is performed. This test confirms the presence of HIV antibodies. Both tests are highly reliable, as they are 99.6 percent accurate.

An important concept to understand about testing is what is referred to as the "window period." This is the time period between a person's being exposed to the virus and having a positive antibody test. This time may extend from a few weeks to several months. Some factors that influence the length of this time period include current health status, presence of other diseases and method of transmission.

The "window period" means that if someone gets an HIV antibody test within a few weeks of infection, the test results may indicate no sign of antibodies even though the person is infected. It is currently recommended that persons who may have been exposed be repeatedly tested at three month intervals for up to twelve months. These persons should refrain from exposing others during this time.

Counseling by a trained professional should always accompany HIV antibody testing. In most communities, the local health department can provide counseling and testing at little or no cost. Physicians or private health care providers may charge more for the same testing service.

Home collection testing for HIV antibodies is now widely available. Basically, this requires an individual to mail in a sample of blood on a special type of card. These tests are also considered to be highly reliable. However, the cost of this testing procedure may be prohibitive for some persons. There are also concerns that telephone counseling is not adequate for those who test positive. Testing for HIV antibodies does nothing to prevent the spread of the disease. Only behavior changes can stop the spread of HIV and AIDS.

The Centers for Disease Control and Prevention (CDC) strongly recommends counseling and voluntary HIV antibody testing for all pregnant women. This recommendation is based on the finding that vertical or perinatal transmission from an infected mother to her unborn child can be reduced by 67.5 percent by the proper use of the drug AZT during the pregnancy.

Can people with mental retardation protect themselves from HIV infection?

Yes. In communities around the country, people with mental retardation are learning how to protect themselves from the AIDS virus and other sexually transmitted diseases. Materials designed by The Arc and other organizations are used to teach safer sex and to reinforce appropriate behaviors. People are learning about their sexual rights and responsibilities. Some people learn faster than others, and others require patience and encouragement as they learn to make safer choices.

Materials should be clear and presented sensitively by trained individuals who are comfortable dealing with this information in an open and non-judgmental manner. Safer sex training should never be forced upon someone who is unwilling to participate. Because of the sensitive nature of the information, training is best offered in small groups or in individual sessions.

What is safer sex?

The only fully "safe" sex is no sex. That is why people use the term "safer" sex. Safer sex involves activities that lower the risk of infection with HIV and other diseases. Safer sex also reduces the risk of unwanted pregnancy.

Safer sex involves limiting the number of one's sexual partners, minimizing the exchange of body fluids, using latex or polyurethane condoms, and using water-based lubricants. Female condoms are available for use by women when their male partner is unwilling to use the male condom. Individuals engaging in sexual activities are encouraged to avoid the use of alcohol and other drugs, as these impair one's ability to use prevention and contribute to poor judgment and decision-making.

Safer sex minimizes the exchange of body fluids containing high concentrations of HIV: semen, vaginal secretions and blood. The risk of infection from other body fluids is extremely low or nonexistent. Reducing exposure to semen, blood, and vaginal secretions during sex almost eliminates the risk of sexually transmitted diseases.

What is dangerous and what is safer?

Dangerous activities include:

Risky activities include: Safer Activities include: Much safer activities include: (adapted from the American Red Cross)


American Red Cross, Basic HIV/AIDS Instructor's Manual: Fundamentals, Nov. 1995.

Marchetti, A.G., Nathanson, R.S., Kastner, T.A. (1989). AIDS and developmental disability agencies: A national survey. American Journal of Public Health.

Clinical Practice Guidelines, Managing Early HIV Infection, U. S. Department of Health and Human Services, Public Health Service, Jan. 1994.

CDC, Recommendations of the U. S. Public Health Service Task Force for the Use of Zidovudine (AZT) to Reduce Perinatal Transmission of HIV, MMWR, Aug. 5, 1994. Vol. 43, No. RR-11.


National AIDS Clearinghouse, 1-800-485-5231, 1-800-243-7012 (TDD)

National Association of People With AIDS (NAPWA),202-898-0414

American Red Cross, 703-206-7180


#101-30 Revised Sept. 1997

The Arc
National Headquarters
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Silver Spring, MD 20910
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