autism and sexuality – consulting the experts

hands

Image is a photo of two people holding hands

Sexuality poorly repressed unsettles some families; well repressed, it unsettles the whole world.
Karl Kraus

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?

Um. No.

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.”

This matters.

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

Talking About Sex and Relationships: The Views of Young People with Learning Disabilities – CHANGE

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

Naked Brain Ink:

9 Things You Must Include In Sexuality Education For Individuals With ASD

One Photograph To Break My Silence: A Heart To Heart Conversation On Autism And Sexual Abuse

6 Things An OB/GYN Needs To Know When Taking Care Of A Patient With ASD

Disability And Sexual Rights 101: A Slide Show And Overview

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. 

13 thoughts on “autism and sexuality – consulting the experts

  1. Thank you Jess for gathering these resources. I have just started to research this topic which has been weighing on my mind so you have just made it so much easier. Fortunately my daughters school includes it in their social education class (a great school) so we have a starting point already.

  2. Wow-seriously fantastic list. And I love your comment “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, so, true.

  3. Thank you for sharing these resources so that we can build our own tools to educate our sons and daughters.

    I’d also suggest parents familiarize themselves with the information in typical resources such as the wonderful “It’s perfectly normal : a book about changing bodies, growing up, sex and sexual health by Robie H. Harris” as they work to individualize this crucial information.

  4. Thank you for these. I hadn’t thought about needing different ways to talk about sexuality with my ASD kid, despite having examples of how much it needs to be discussed. My s-i-l’s sister has an intellectual disability, and her mom has refused to discuss sexuality and how bodies change in puberty, never mind discussing birth control. Sil’s sister now has two children with multiple diagnoses, and still doesn’t completely understand the connection between sex and babies. I know it takes great care and gentle handling to broach this, and it feels so awkward to discuss it when I was always told to answer the questions when they come up. But when there are no questions…

  5. Thank you! It’s been difficult to explain, over and over again, that even though my son is developmentally disabled, he’s still, ya’ know…eleven. With all that entails. Thank you for dignifying that, and rounding up appropriate resources!

  6. See, Jess, you ARE a mind reader! I was just thinking this past weekend of asking you for advice on resources for continuing the conversation about puberty and heading to the sex talk with my autistic 11 year old and you post this! Thanks for the links. I will read them very carefully.

    Stella

  7. Great blog! Important subject, refreshing idea’s, so: many kudo’s…

    One remark though: why sneer at experts? As in ‘Not the self assigned “experts” in the field, but those IN the field. People with disabilities.’
    Like it or not but YOU are one of these self assigned experts, since you’re not the source, as you put it.
    All good experts do what you do to the extent it’s about the actual experiences and feelings; they learn from the people themselves. Other experts may study the hormone system or whatever biology is involved. Without those experts – pioneered by Masters & Johnson – we still wouldn’t know the first thing about sex.

    But maybe I got you all wrong and by ‘self assigned experts’ you mean the multitude of pseudo-experts, claiming the most ridiculous and dangerous nonsense about all aspects of autism.

  8. Pingback: Sex with the Abled and the Differently –Abled - interesting12

  9. Thanks for putting together these resources. The subject came up today during our coffee group and I knew I could share this post with the mom to help her navigate this very important subject.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s