Sexuality in youth with special needs

Recently there was a lovely story in the New York Times about a young couple struggling to navigate the complexities of a romantic relationship.   Both in their early 20’s, dating is a relatively new experience for them.  She likes physical affection; he prefers sitting alone on the couch.  She wants a pet; he is allergic.  They are learning to negotiate the small things while clinging to their common affection for each other.

Did I mention that they both have autism?

Humans are sexual beings.  From our earliest moments, we have a desire to love and be loved, to touch and be touched.  This is true regardless of our mental or physical abilities.  I ask all my patients about their sexual activity and relationships, without judgment, because this is an important part of their health.  Once I participated in the care of a 32-year-old woman with spina bifida who was being seen by a pediatric specialist.  She seemed surprised when I asked her about birth control and her plans for pregnancy.  She had been having sex with her boyfriend for years, but no one had ever thought to ask her about it.  Her physicians usually concentrated directly on treatments for her spina bifida.  It turned out that the woman had never had a pap smear.  I encouraged her to be seen by a gynecologist for a comprehensive exam.  On another occasion, I taught sex education at a high school for students with intellectual disabilities.  Several of the students were in wheelchairs or using leg braces; most had found very creative ways to have sex!  One of the young men in the class boasted that he forbade his girlfriends from going to parties unless he was present.  We had a frank talk about what constitutes a healthy relationship versus a controlling one.

Providers should ask about sexuality as part of a routine health maintenance visit.  Whenever possible, information should be obtained from the patient rather than a care giver, with appropriate respect for privacy and confidentiality.  Elements of a sexual history can include:

Orientation. Is the patient attracted to men, women, both or neither?  What is their sexual identity?

Relationships. Does the patient have any significant relationships?  Are the relationships healthy?  Is the patient a victim, or perpetrator, of violence?

Behavior. Does the patient demonstrate any sexual behaviors, such as touching, holding hands, hugging, masturbation?  Is the behavior public or private, socially appropriate or inappropriate?  If sexually active, what parts of the body are involved in intercourse?

Menstruation.  Does the patient get her period? How much and how often? Is there any pain?  Does the patient’s mood or behavior change with menstruation?

Fertility. What are the patient’s desires for children?  Is the patient physically able to have children?  What contraception is being used?  What supports are available to assist with childrearing?

Disease prevention. Has the patient been appropriately screened for infection, including chlamydia and HIV?  Does the patient need a Pap smear?  Have they received the appropriate vaccines?  Have they been counseled in disease prevention?

I hope that the young woman and young man in the New York Times article have a supportive health care team who is asking about their sexual health.  Like all of us, they have a lot to learn about healthy relationships, their bodies and sex.  The fact that they have autism certainly influences their sexuality but does not negate their ability for sexual expression.

Kitty O’Hare is an internal medicine-pediatrics physician.

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