I work as a sexual behavior specialist for adults with intellectual disabilities. That means that I work with clients to help them make healthy behavior changes within the realm of sexual needs.
Okay, so…what does that mean?
Behaviorists believe that every behavior has a cause. No action appears out of the blue. We can’t change people’s behaviors just by teaching them to do things differently, or by punishing/rewarding various behaviors. We have to change the events that lead to a behavior. Only then will the behavior change on its own (or with some retraining).
So how does behaviorism tie in to sexual needs?
Well, ‘sexual needs’ is a pretty big umbrella! My clients may need help with forming or keeping romantic relationships, processing sexual trauma, or healthily expressing sexual needs or desires. They may exhibit unsafe sexual behaviors or be resistant to health care. Some of my clients throw tantrums or flip chairs when their friends don’t pay attention to them. Some of them are cruel to their staff, and some obsess over their romantic partners. Any unsafe or unhealthy behavior that relates to social interactions or sex are behaviors that I can help them with.
Most of my clients live in homes with staff members or family who care for them. They’re independent to some extent but wouldn’t be able to live fulfilling lives as adults without support. Even still, about half of my clients either have or want romantic or sexual partners.
One big question that comes up around working with folks with intellectual disabilities is their reproductive capabilities. “How can we stop our child from getting pregnant?” frantic parents will email me. “What if they have unprotected sex!? They can’t take care of a child!” “What kind of birth control should we put our daughter on?” “My [38 year old] wants to have a baby, but she’s not old enough/able – how can we prevent that?”
Part of the work I do as both a sex educator and as someone who works with folks who have intellectual disabilities involves helping people prevent unwanted pregnancies. I can advise the use of over-the-counter prophylactics (usually condoms) and offer safer sex information and advice. But people looking to me for help and advice need to keep two things in mind:
- I am not a doctor.
- I will not press my clients to use any kind of irreversible or difficult to reverse birth control unless they explicitly tell me that’s what they want.
#1 is pretty obvious – I can’t advise the use of one brand of the hormonal birth control pill over another, or assess if someone is a good candidate for the sub-dermal implant versus an IUD. I can’t administer a blood pregnancy test or give prenatal advice. I’m not even a little tiny bit qualified to do any of that. So when a client is looking for any kind of non-barrier prophylactic, I advise their house manager to schedule an appointment with a non-judgmental doctor who is experienced working with patients with intellectual disabilities (I have a list).
#2 seems to baffle parents, though. It’s obvious to them that their dear, sweet child should never have a baby, and how can I not help them convince that child to accept a fairly invasive medical procedure? Isn’t it my duty as a sex educator to prevent pregnancies??
It’s my job to help prevent unwanted pregnancies.
And if their (adult) child wants to avoid getting pregnant, than I am absolutely on hand to help them talk through their birth control options, up to and including tubal ligation. But unless my client tells me, out of ear shot of their parents and after getting to know and trust me, that they want a difficult to reverse method of birth control, I am not going to manipulate them into making that “choice”. Adults with intellectual disabilities are adults, and adults are permitted to make their own choices about what to do with their bodies. I help to answer questions and to provide options, but not to push them in any direction that they don’t choose to go.
Now, many of my do clients agree that they don’t want children right now. They want children at some point, when they are stable and ready, but for now want to have sex without having to deal with pregnancy. For folks with intellectual disabilities who want a reliable, long-term form of birth control, I recommend the following:
IUD, sub-dermal implant, the depo shot, the combination pill or the progestin-only pill. These are all options that work great for folks with intellectual disabilities because they’re either like a crock-pot (set it and forget it), or they’re easy enough to take consistently (one pill per day!). I look for something which is easy to use and reliable; ie, it will not be a difficulty for my clients each time they want to have sex, and there is a low failure rate.
I do not recommend relying only on condoms to prevent pregnancy in people with intellectual disabilities. Sure, condoms are easy to use, but not reliably. Even people with typical cognitive function will misuse condoms, or experience slipping or breaks. This being said, I highly encourage and support condom/barrier use for all of my sexually active clients that don’t have monogamous sexual relationships where one or both partners have a semi-permanent or permanent form of birth control. Two methods of birth control will almost always be more reliable than one (unless contraindicated), plus they help prevent the spread of STIs.
The terror of pregnancy and burning need to control is a highly gendered thing, as you can probably imagine. While most of my sexually active male clients are told that to get their partner pregnant would change their lives, and they’d have to “man up”, get a job, support their girlfriend, etc, it’s largely their staff or non-related caretakers who push the use of condoms. Their families are unconcerned. I’ve never had a worried parent ask me, “what will we do if my son gets his girlfriend pregnant???” The parental fear is entirely for my female clients.
Their parents cajole them.
“Wouldn’t you like to get an IUD, sweetie? You won’t have to worry about getting pregnant!”
“But what if I want to have a baby?”
“We can discuss that in the future, when you’re ready to have a baby. This is just for now.”
This conversation repeats year after year. Strangely, despite growing older and more independent, their parents never judge them ready to have a baby, and therefore never take them to get the IUD removed. No one explains to them that to get an IUD removed is a second invasive procedure which requires scheduling and a copay, all of which their parent usually handles.
They never regain control of their uterus.
This is the barely more palatable struggle replacing the fights over non-consensual sterilization of women; tens of thousands of women and girls in residential facilities or who are cared for by parents have their tubes tied to prevent an inconvenient pregnancy or the need for birth control maintained over time. These non-consensual procedures are either forced or coerced, but have the same result either way: permanent physical damage. The Human Rights Watch defines forced sterilization as “occurring when a person is sterilized after refusing the procedure, without the individual’s knowledge or when the person has not had an opportunity to consent. Coerced sterilization occurs when misinformation, financial incentives, or intimidation compels the individual to undergo sterilization.” Easy enough to do with some of my clients.
Why do parents or caretakers do these things?
They explain that they’re concerned about rape (not unreasonable, as adults with disabilities have a 300% higher chance of experiencing sexual assault than people without disabilities) resulting in pregnancy, and that it would ruin their daughters’/residents’ lives.
But this forgets the very real possibility that these adults – adults!! – will have sex that they consent to, get pregnant, and have a child that they desire. Yes, the care taking needs for that adult will change, as children require very specific kinds of care. But does the increased cost or effort of taking care of a child justify coercing or forcing someone into invasive medical procedures or sterilization?
This is a timely concern of mine. During the hearings last week for Brett Kavanaugh for Supreme Court justice, the senate was reminded that Kavanaugh once opined that adults who have been judged legally incompetent shouldn’t have any say at all in medical decision making, not even to share their preferences. This is highly unusual – adults who have been judged legally incompetent, and therefore not legally responsible for their own care are generally asked their preferences when it comes to living situation, medical procedures or decisions, and other life-changing events, and those preferences are taken into account. To have a Supreme Court justice who believes that because someone’s cognitive ability is non-typical that they should have no say in their own lives is appalling and terrifying.
Parents often see their children (especially their girl children) as little kids, long after they reach young adulthood and adulthood. This goes double for parents whose children have intellectual disabilities. What that means is that they continue to deny their children autonomy over their own bodies, long after their children should pass milestones towards adulthood while supported by their parents.
When parents ask me for the best birth control to use on their adult children with intellectual disabilities, there is absolutely no simple answer. But there is one simple question: what does that person want for themself?
For the previous piece in this series check out Intellectual Disabilities and Sexual Consent
Galia Godel, 2018