Image is a photo of two people holding hands
Sexuality poorly repressed unsettles some families; well repressed, it unsettles the whole world.
Whether or not it’s something we are comfortable discussing, sexuality is a thing. A big thing. A huge part, in fact, of the human experience.
So huge that it’s part of nearly every sales pitch for nearly every product imaginable. Because, well, sex sells. Because it’s, ya know, sex. And let’s be honest, sex is kinda awesome.
It’s not for everyone, of course. There are plenty of folks out there who identify as asexual. And, as with any other sexual orientation, their self-identification must be respected. They know how they feel. And don’t feel.
And they are the only ones who can know. Because, by definition, sexual orientation can only be identified by the particular person experiencing it.
And that, of course, is where it gets complicated for people whose disabilities complicate communication. Sexuality, especially before it becomes “tangible,” if you will, is highly conceptual. It can be difficult to wrangle into words and even more difficult to wrangle when there are no words.
However, just because it’s hard (or even impossible) to talk about, doesn’t mean that it doesn’t exist. Humans are, as a general rule, sexual creatures. We experience urges and desires. All of us. (Yes, even asexuals – click on the link.) And that means that we, as parents, have a responsibility to do everything in our power to help our kids understand what those urges are, what sexuality is, and how to have a healthy relationship with it. It’s also, of course, incumbent on us to teach our kids how to recognize and protect themselves against abuse.
But here’s the thing. Nearly all of the research that I did on this topic seemed to lead to the same basic message:
Parents of people with disabilities need to teach their kids about sex in order to a) protect them from predators and b) to teach them how to repress their own desires so as not to inadvertently act as predators.
Um, ok. So, yeah. Those are really important topics addressing totally valid concerns. It is the stuff that keeps many of us up at night.
But that’s it? Really?
That’s not it.
Stopping there, reducing sex to something to be either FEARED or CONTROLLED isn’t right, isn’t fair to our kids as they enter adulthood, and is never going to work.
So what do we do?
Well, if you’ve been around here long enough, you can probably guess my answer. We go to the source. Not the self assigned “experts” in the field, but those IN the field. People with disabilities.
When I approached an autistic friend about this, I asked if she knew of any good primary resources that I could consult. You know what her first response was? The very first thing she said?
“Thank you for asking.”
Our kids’ sexuality doesn’t cease to exist the day that they are diagnosed with autism, nor does it fail to exist just because they don’t have words to describe it.
It’s complicated stuff. Teaching them about their changing bodies and their sexuality will take some creative thinking. Words might not be useful. You might need drawings or dolls or videos. You might need to write stories using characters they can relate to. You might just find yourself talking about what happens after Rapunzel and Flynn settle into life in the castle.
If you’re embarrassed, get over it. Trust me, shame will serve neither of you. Our kids will take their cues from us. The only thing we can do is be honest, open and direct.
And, above all, no matter how little we think they may be able to understand about this or anything else, we must — we owe it to them to — presume them competent of taking in the information we present — in their own way — and using it — in their own time — to make sense of a big part of who they are.
The following are some of the resources that my friend offered. I will add to it as I find others, so please leave links to anything else you’ve found helpful in the comments.
Sexuality: Your Sons and Daughters with Intellectual Disabilities – Karin Melberg Schwier and David Hingsburger
My Life My Choice – Interviews with Dave Hingsburger
Doin’ It: Sex, Disability and Videotape – The Empowered Fe Fes
The Rules of Sex: For Those Who Have Never Been Told. – N. Baladerian, PhD & J. Nunez
The Story of Robert and Julie – Rabbi Norman Cohen
Undressing Normal – An (Un)Conference On Sexuality For Those Of Us DisLabeled
The Best Of Relationships And Romance – The Riot
Guide To Getting It On – Asperger’s, Autism Spectrum And Intellectual Disabilities
Autistic Sex: For A Terrible Time Call – Barb Rentenbach
Ed note: Please do not ask me specific questions about Brooke or how we are handling these issues in our home. I won’t answer them. Thank you.