Impact Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities

What are the concerns and information needs of parents of young people with disabilities when it comes to their child's sexuality? In seeking answers to that question, PACER Center, a national parent center for families of children and youth with disabilities or special health needs, recently conducted cross-cultural focus groups with parents of youth with disabilities ages 12-22 to gather their views about sexuality and disability.

Through nine focus groups conducted in 2009, 55 parents of culturally diverse backgrounds were surveyed in New York at Sinergia, Inc./ Metropolitan Parent Center, and in Minnesota at PACER Center, to gather information for a new curriculum addressing sexuality and disabilities titled,The Journey to Adulthood: What Parents Need to Know. Taking part in the focus groups were parents, staff facilitators, and group recorders representing Somali, Hmong, and African American cultures, as well as the cultures of the Dominican Republic, Honduras, Puerto Rico, Mexico, and Ecuador. Parents answered five questions related to the area of sexuality:

• Has your son or daughter ever been attracted to another person?
• Has your child ever been in a relationship?
• How do you view your son's or daughter's physical/sexual maturity?
• Have you seen or known of people with disabilities who are in relationships?
• What information would be helpful to you?

Their responses, which provide a glimpse into parent concerns and information needs, are presented in the remainder of this article in the form of facilitator summaries of group consensus, as well as specific representative quotes.

Attraction to Another

When asked, "Has your son or daughter ever been attracted to another person?" many parents of older children acknowledged that their children do show interest in the opposite sex. Responses included:

• Of course, they just have a disability!
• My son has been attracted to girls and describes what he likes about them – their eyes, the way they treat him.
• My daughter has said she likes her friend and that he is her boyfriend.
• In school, it causes a great deal of problems.
• My son likes girls. He wants to touch them, which is dangerous.

Relationship Experience

When the question, "Has your child ever been in a relationship?" was posed, most of the parents said no. Some commented that relationships would be likely to cause more problems and expressed worry that their children would not be able to form relationships. Others asked that the term "in a relationship" be defined: One parent stated that "a relationship for my child means 'going steady,' talking on the phone, e-mailing, getting to know the other person, or maybe going on dates to the movies on a weekend afternoon." Many parents said they are dealing with other issues and do not think about the relationship issue, while some parents had specific concerns about their child's relationship with the opposite sex, such as how to help them develop appropriate boundaries. Other responses included:

• No. They like other people but don't go beyond that point.
• Yes. My son has a girlfriend. I don't like it when he wants her to stay over.
• Yes. I have problems establishing boundaries.
• My son, who is 14, has started asking questions or mimicking other kids about sexuality and gender differences. I never thought I would be speaking to my kids about how to interact with the opposite gender.

Physical/Sexual Maturity

The focus group members were asked, "How do you view your son's or daughter's physical/sexual maturity?" All participants of one focus group stated they worked with their family doctors and their families concerning this issue. They all stated that they talked with their children and they know where their child's physical and sexual maturity levels lie. Members of the other focus groups offered a variety of responses. While some parents noted that their children weren't yet sexually mature, others were aware that their children needed specific information and were already talking with them about appropriate sexual behavior. Some of their other responses included:

• All humans are sexual beings.
• My son worries about looking good and he knows what has been explained to him. He knows how women get pregnant.
• I've prepared my son on the use of a condom and appropriate sexual behavior.
• My son knows that self-touching is private. I think he has the emotional maturity to be in a relationship.
• In our culture, you don't talk to your kids about having a relationship. You talk to them only about getting married and having a family. However, I came to realize that we are not raising our children in our home country. Therefore I changed my way of thinking. I will talk to my kids about relationships and puberty when they are the right age.

People with Disabilities in Relationships

When asked, "Have you seen or do you know of people with disabilities who are in relationships?" many said yes while others responded "never." Most parents in two of the focus groups said no. Some parents were afraid that a relationship was beyond their child's ability and said that a relationship should not even begin. Responses included:

• Yes, walking down the street and at a camp my child attended.
• I know of a couple with a child.
• I know of a group home where there are two or three couples including one gay couple.
• The thought of my child being in a relationship concerns me because I don't want him being taken advantage of.

Information Needs

In response to the question, "What information would be helpful to you?" most of the parents expressed interest in workshops on sexual education in general that would address topics such as how to communicate about it, how to deal with issues of sexual abuse, and other related issues. One group of parents said they receive enough information from physicians and their families and did not need any other information. Another group was not comfortable with the subject. The facilitator of that group stated: "Even though they were answering the questions, I could clearly see by their reaction that they did not believe their children had a good chance of having a normal life. Also, paying attention to a child's personal growth is not part of the culture." Other responses included:

• How not to have fear about talking about sex to my kids.
• How to talk to girls about their first menstruation.
• How disability affects a loving relationship.
• To learn more about those who are married and their lives.
• How to teach children about sexual predators.
• How to teach children to communicate with parents about sexuality issues.

Conclusion

These focus groups were formed specifically to inform PACER Center as it responded to a need expressed by parents and parent groups across the county for curricula on this topic. "Discussion of puberty and sexuality can be uncomfortable for most parents, but it can be particularly difficult for parents and care providers of youth with disabilities," according to Shauna McDonald, PACER's Director of Community Resource Development. "Parents want to prepare their children with disabilities for the changes of adolescence, but many are looking for ideas and strategies to help them do this. We want to provide resources so parents can more easily teach their children about their changing bodies and how to maintain personal safety."

The curriculum,The Journey to Adulthood: What Parents Need to Know, developed based on these focus groups, is currently being used in training by the 104 Parent Training and Information Centers nationwide as they work with underserved and underrepresented parents in their communities. It will also be available online in September 2010 through PACER Center .

Note: The curriculum was developed by PACER as part of the National Family Advocacy and Support Training (FAST) Project in collaboration with other parent centers and the FAST Partnership Board. The FAST project, funded by the Administration on Developmental Disabilities, U.S. Department of Health and Human Services, helps families of youth with developmental disabilities become aware of and advocate for family support services as well as influence systems change. Its primary emphasis is on reaching underserved families from all geographic regions in the U.S. and its territories through the network of 104 parent centers.