Did I get your attention?

If you are the parent of a child/teen/adult with a developmental disability, you probably:

a)  Cringe at the thought of trying to explain things in a comprehensible way

b) Wonder if sex will ever be an issue (Spoiler alert. It will.)

c)  Worry about your child’s safety

d) Wish there was more information and research on all of the above.

I interviewed Leonard Magnani, MD, PhD, an expert in the field of educating individuals with disabilities about sexuality a few years back when I was profiling speakers for UCSF’s Annual Developmental Disability Conference. It was one heck of a great interview, so I am repeating today.

Dr. Magnani is a  Family Practitioner and Medical Director at the  Alta Regional Center.

__________

Q: It seems that there are fewer women than men with developmental disabilities. In my 25 year old son’s day program alone there are zero women (and he is not happy!) Have you heard this complaint from your male patients?

A: For some developmental disabilities, like Autism Spectrum Disorders, there are more males impacted.  However, world wide studies show that more women have developmental disabilities than do men.  Women in all countries receive less services, in part because they and their caregivers are less aggressive in speaking out, and in part because they are more socially sheltered even in progressive, Western countries.  In studies of status, a young girl or women with a developmental disability, few financial resources, and minority group ethnicity, is ranked lowest on the list.

Q. I know that many parents of individuals with autism are afraid to talk about sex for fear that their children will obsess about the topic. How would you respond to that fear?

A. When talking about sex and developmental disabilities, I sometimes show a slide with a pink elephant in the living room.  Underneath I ask, “What elephant?”  No one wants to confront the fact that we are up against human evolution and physiology.  This is analogous to grief reactions:  some caregivers wishfully think, “Out of sight, out of mind,” and remove all pictures of the person who is no longer with us. 

The fact is that almost all of  mind, all of thinking, is unconscious.  It may take weeks or months, but the brain will react to the absence of familiar eyes, a well-worn voice or a special person’s reassuring touch.  Grief is a physiological reaction and the mind and body do best when there is continual story telling and remembrance of the departed.   Sexuality is also, of course, physiological; the body and mind will react to sexual yet unconscious thoughts, feelings and sensations whether or not it’s “out of sight.” 

Boys more than girls will discuss sexual issues with their peers, and the society at large is filled with provocative images.  Talking about sex in a systematic and thoughtful way prevents acting out and other unhealthy behaviors, just like talking about grief leads to healthier outcomes.  Furthermore, in the case of sexuality, the strongest defense against sexual abuse is sex education.

Q. Are individuals with developmental disabilities having sex?

A. What we are dealing with is one of our species strongest drives.  There are books co-authored by individuals with intellectual disabilities, and written by people diagnosed with an ASD or cerebral palsy, that discuss their interest in relationships, including dating and sexual relationships, and the problems they’ve encountered and overcome.

Q.  What about birth control?

A. Birth control in most instances is a key part of sex education, whether the caregiver’s emphasis is technological (for example, pills and physical barriers to conception), or philosophical or religious (i.e., the promotion of life-long abstinence).   In recent years, the rights of individuals with developmental disabilities are finally coming to light.  Forced sterilization of men with a diagnosis of Down Syndrome no longer receive popular support.  Nevertheless, there is great variation State-to-State concerning how easy or difficult it is for a legal guardian to obtain forced sterilization of an adult with a developmental disability.

Q.  How early should parents talk about sex?

A. Sex is much more than intercourse, and we all know that.  If we define it as any kind of physical contact with a non-family member friend, like holding hands or kisses on the cheek with a special friend, then the earlier the better.  The “Good Touch-Bad Touch” and the “Circles” educational formats have learning guides for preschool and kindergarten children.   Teaching a child that it’s okay to hug Uncle Harry but it’s not okay to hug the Postman that way, is sex education.

Q.  The best way to talk about sex?

A. That’s the meat of the issue.  The best advice is to not try and reinvent the wheel.  There are many good programs that have workbooks, DVD’s and other teaching aides for parents and professional educators.   

Q.  How can parents and caretakers supervise/facilitate relationships with the opposite sex?

A. A key behavior modification principal is to be proactive and to limit the antecedent conditions that produce undesirable outcomes.   Knowing where your child is and who they are with and who the parents are of those they are with, is the bedrock of adolescent and teen parenting.  Finding and working to develop peer social groups are difficult tasks but readily doable.

Q.  It seems that there  is very little literature or research out there as to how to teach people with autism  how to behave appropriately in terms of their own bodies and other people’s as well. Why?

A. Times are changing and the large population of children diagnosed with an ASD in the past 15 years are now becoming young adults.  There are now books, group simulations and social stories designed to help people with autism develop the behavioral patterns that foist healthy relationships.  A difficulty faced by those with an ASD (that isn’t encountered by some others with a developmental disability) is the inability to recognize subtle facial expressions, body posturing or gestures.  Most communication is nonverbal, and this is so very true for friendships and relationships.  It’s a challenge, to say the least.  But again, there is a literature and proven expert guidance, so no parent has to go it alone.

Q. Our children/teens/adults are vulnerable. How can we make sure that they are not being abused sexually? How do we keep them safe?

A.We have to monitor the monitors.  Caregiver abuse is more common than we want to admit, as evidenced by the past admissions of the Catholic Church, and by the current University scandals.  The best defense is sex education throughout a child’s life.  The worse thing to do is to begin education after an abuse, sending the message that the child did not do the right thing.  There is only one strategy following abuse, support the victim as much as possible (and expose and punish the perpetrator).

Q.  What do you think is the most common misconception that people have about sexuality and the developmentally disabled?

A.Those with a diagnosed developmental disability tell us all the time:  their sexuality and sexual needs are no different than those of the general population, but no on seems to listen.

---

 

You may also want to read a story I wrote on the topic for Thinking Person’s Guide to Autism.

Also, check out ASAN’s Healthcare and Transition Toolkit.