Yes, Virginia, we teach sex education to youngsters with Autism

Gio, my baby boy.

That was how my husband would call our first-born. Until now that he is turning 16 years old.

Gio was diagnosed with autism when he was two years and 4 four months old. We immediately plunged ourselves in providing him early intervention program upon learning that.

After the initial assessments, we agreed with our doctor, teachers, speech and occupational therapists on our primary goal: to teach Gio self-help skills (for daily living activities), acceptable social behavior, and communication skills.

Each day was a flurry of early intervention-related activities: school, therapy sessions, follow-ups at home. And every night, as I watched him sleep, I knew Gio would always be our baby. A forever baby.

Yet one day, I saw hair growing on different parts of my baby – his face, his underarms, and yes… his genital area. Fears seeped in. What if Gio starts masturbating? What if he starts “touching” girls? Will he attempt, and insist, to have sexual intercourse? Worse, will my baby in a grown-up gorgeous body be sexually abused?

Yes, Virginia, teaching skills for daily living among persons with autism (PWA) includes those related to sex.

Angels Talk interviewed one of the country’s much sought after developmental behavioral pediatricians and child protection specialists, Dr. Stella G. Manalo. She is an associate director of the Child Protection Unit of University of the Philippines – Philippine General Hospital. At the same time, she is training officer of PGH’s Developmental Behavioral Pediatrics Section. Dr. Manalo is also head of Medical City’s Center for Development Pediatrics.

*****

Will adolescents with autism have the same sexual issues as other adolescents?

Biologically, yes. This means they have the same hormonal surges and body changes. However, cognitively, they may not understand social relationships and norms the same way typically-developing adolescents do. For example, an adolescent with autism may have well-developed secondary sexual characteristics (breast, genital hair, etc) but has the mind-set or mental level of a seven-year old. This adolescent does not understand sexual relationships or drives like a typical adolescent.

Some parents of young female PWAs fret about early signs of adolescence (like breast buds even before teeners).

They are also very concerned about when will their daughters become “dalaga.” How should parents handle these “female” concerns?

Breast budding is the first sign of adolescence. This may start as early as age eight years old.

Technically, adolescence starts way before children reach their teens (around nine or 10 years old).

“Dalaga” is a vernacular term usually signifying the start of menstruation.

Parents should prepare their child like all other children, just so they do not get scared and think that they are injured.

Proper hygiene should be taught (like the use of sanitary napkins).

How should parents deal with teeners with autism, specially those who are non-verbal, when they start discovering pleasure from touching their genitals?

Non-verbal teens with autism are like young infants or children who discover the pleasurable sensation when touching their genitals. This is to be expected but should not be fussed over too much. The more you fuss and notice it, the more it will occur. Just distract the child.

What about teaching young PWAs to actually “relieve” themselves by masturbation?

Sexual relief by masturbating is a perception of typical adults. This is a learned behavior and should not be projected on to everyone. If it is not learned, it does not have to occur. This behavior is a crazy notion by some adults. It should not be taught to children because it is not a necessity.

The adult who teaches this to a CWA may be liable for sexual abuse; it could be used as an excuse to sexually abuse the CWA. Plus, it could easily become a perseveration.

But what if a young PWA has already learned how to masturbate?

If the behavior is already established, you may start to train the child to extinguish it. Otherwise, the child should be trained to do it in the privacy of his room or bathroom.

Should we allow our teeners with autism who are also mentally-challenged to have romantic/sexual relations?

The notion of romantic relationships or the need to get married is a learned behavior or expectation. If the adults surrounding the child always talk about how “you should have a boyfriend” or “you should get married because it is what girls do when they grow up”, then the child will expect this and be molded accordingly.

But a mentally-challenged teen with autism really has no need for romantic or sexual relationship.

Friendship is more important. Remember, again it is the adult who projects their expectations onto the child.

Furthermore, a mentally-challenged individual cannot legally consent to any sexual act or relationship; an adult who has sex with a mentally-challenged individual may also be liable for sexual abuse.

What about romantic/sexual relationships for those considered as “high-functioning” PWAs, like those having Asperger’s syndromes

Those with Asperger’s syndrome most likely will be able to have romantic/sexual relationships since they are usually very functional and have average or high cognitive functioning.

“Aspies” can learn the expectations and complexities of human relationships to a certain degree.

They can go through the motions of having a relationship but without the close emotional bonding expected in such relationships.

There are cases of sexually-abused females with autism. Some parents consider sterilization (hysterectomy, ligation) to avoid being abused and pregnancy. Will sterilization prevent abuse?

Individuals who are mentally-challenged or have autism are at great risk for sexual abuse. Even if their bodies mature and develop, their mental age may still be that of a child, and they are weak in making proper judgments or decisions. They are naïve and easily fooled, manipulated and exploited.

Sterilization (hysterectomy, ligation) will not prevent sexual abuse, but will protect the child from the consequences of sexual abuse.

Is sterilization legal? Is it ethical?

I had actually asked a priest and expert in Canon law about giving contraceptive pills to one of my patients who was constantly being raped. The priest actually told me that I should not even call it contraception because “contraception is used in the context of conjugal relationships”.

“Rape is never conjugal,” the priest said, “individuals who are mentally challenged will never be able to consent to sexual relationships; therefore their involvement in sex is never conjugal”.

The priest told me that in this context, my giving of preventive measures should be called “emergency protection” and not “contraception.” He further added that I should do something more permanent, like ligation.

Let me emphasize that parents or caregivers should carefully look into their intentions when considering sterilization. If the intent is to protect the child, then this is ethical. Other intentions should undergo bioethical investigation under the hospital’s ethics committee.

In general, how do we educate young persons with autism on sex, specially those who are more challenged in terms of cognitive and communication skills?

Sex education of individuals with autism should always be done in the context of abuse prevention.

They should be taught about their private parts and how this should not be touched by others and how to tell significant persons (parents) that they have been touched inappropriately.

January 17-24 next year is National Autism Conscsiousness Week Celebration.

Autism Society Philippines, in partnership with different government and private organizations, has lined-up different events for the week-long celebration, including a Family Day on January 17, 2010 at the SkyDome of SM North EDSA and the Angels Walk for Autism on January 24, 2010 at Mall of Asia. For details, please email autismphils@gmail.com or autismphil@pldtdsl.net.