Sexuality and the AutismFamily

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).
This is going to be a touchy one. Please consider this your trigger warning. But if you follow what I have to say below, I think you will understand why I’m not going to be quiet.
 
 
A couple of weeks ago, I saw an article in the Daily Beast with an extremely provocative title – suggesting there may be a hidden epidemic of young men with autism getting caught up in child pornography. I was taken aback by this. When I talk about criminality and people with autism, I often point out that there has historically been no real evidence supporting the idea that people with autism frequently engage in criminal or antisocial behaviors, and even a little evidence that they are less likely to do so than others. Thus, like most of the AutismFamily, when people blamed Adam Lanza’s behavior on ASD, I questioned this strongly (and still do). I was reading along in the article, and then I saw, “My daughter, Temple Grandin…” and I realized who the author of the article was! It’s one thing to ignore a post like this from some “ignorant” reporter who doesn’t know autism from asparagus. But Temple Grandin’s mom is kind of a different story, non?
I tweeted about it, but it was such a controversial topic that a dear friend and valued mentor suggested it was too inflammatory, and I deleted my tweet. Since then, Emily Willingham at Forbes responded strongly to Ms. Cutler’s views, and John Elder Robison had a more neutral appraisal. (As an aside, can we stop for a moment and note how impressive it is for Mr. Robison to model such a nuanced position on this topic, taking into account so many contravailing opinions and strong feelings on this topic… some argue Theory of Mind is a core deficit on the autism spectrum, but many of us NNNT’s could learn a thing or two from him!)
In the intervening weeks, I’ve been drawn in a lot of directions, but this topic has weighed heavily on my mind. I agree with Mr. Robison — problems that arise in the NT population often occur for radically different reasons in autism. For instance, I know an autistic adult who drank heavily for years without any real chemical dependency, and essentially went sober the day he was removed from the environment in which he did this to fit in, without looking back for a day since. Behaviorists (don’t get me started) actually have a technical terminology for this, and it’s a first fundamental principle of modern behaviorism. They say that behavior should be understood for its function (why it happens) and not its topography (what it looks like). If you want to know more about that, this GrandRounds, featuring a world expert, is a great introduction.
And the AutismFamily has been brutally honest with me about problems no one deals with. I’ve met families of toddlers who sleep less than two hours a night. I met a child who had somehow learned to poop only on windowsills. When I relate these stories to the AutismFamily, they’ve seen so many things that they don’t bat an eyelash.
And then…
And then, while this was stewing in my mind (and being astonished that Ms. Cutler’s post has not gone viral), in the last couple of weeks I heard multiple stories about sexuality and young adults in the AutismFamily, with our young people making bad decisions, with much more vulnerability to the consequences and difficulty navigating this environment than people without autism. The stories came on in a wave — I had hardly dealt with this issue at all, surprisingly, in the last two years, and not for want of asking about them, because I do. And, they forced me to radically reconsider my silence. These weren’t anecdotes. These were members of the AutismFamily who are brothers and sisters in arms — families I have been getting to know well and value dearly.
I don’t have answers. Sexuality is a tough one … we’ve all struggled, and most of us, if honest, have to admit we’ve made bad decisions at one point or another in our life. I’m hardly here to judge. It’s also deeply personal. As a clinician, I always feel like I’m prying when I ask about it, even though I try to do so in a respectful and minimally invasive way, and I ask questions only that are relevant to my ability to serve the person. When I taught undergraduates, and I asked them about clinical populations to which they are drawn and from which they recoil, they almost invariably say they’d never work with sex crimes (even though someone presenting to a medical or neurodevelopmental clinic and disclosing pedophilia, I can tell you, is really not a common occurrence).
However, I tend to agree with Mr. Robison. Although we need to hunt carefully for data and not create a witchhunt based on anecdotes, we need to understand the function of this behavior. What do we know? Following the Adam Lanza story, I think, even if there is not empirical rigor behind it, we have adequate data to know that the vast majority of individuals on the autism spectrum, outside of those with severe impairments, seek closeness, want intimacy and friendships, and as teens and adults, want romance and sexuality. Although there are a few people I’ve met whose set point, in the context of autism, is so against human interaction that they routinely recoil from it, this is not common. We also know that our sexual and relationship behaviors, of all the things we do, are among the most nuanced. Even when we are being crass (and we get crass!), navigating this space requires an immense amount of reading “between the lines” hidden cues and integrating verbal and non-verbal content with historical information and context to infer social intention. In other words, if there’s a place our teens and adults are going to struggle, we should expect this to be the place.
When we say basic functional and social communication are core issues in autism, we advocate for and provide early intensive behavioral interventions that develop these skills. When we say friendship development and community integration are crucial after that, we use tools like PEERS and CFT to empower the AutismFamily (and you know I believe that pays dividends!). And when we say that we are missing value as a society because we under-employ autistic adults, we talk about employment solutions. Isolating and silencing the sexuality of the AutismFamily makes no sense. There’s no reason to believe that approaching this topic with the exact opposite of the logic and approach that works in all other aspects of powering up the AutismFamily will somehow magically make these concerns go away.
So, in the words of Salt N’ Peppa (yes, I’m aging myself), Let’s Talk about Sex, Baby! Because, if we don’t, we’re going to regret it. 
That’s just what I’m going to do. I’m going to be brave and say, while I don’t have an answer, I won’t avoid the question. Next week, I’m bringing a pastor from Central Michigan who has been taking an honest look at talking about sexuality with special needs youth to our FamilyRounds (EDIT: this serious was discontinued some time after this post). I’m scared. Scared to talk about this, just like all of you are. But, I’m going to learn to be brave. Humbly. Alongside the AutismFamily. Because that’s what the Adopted Son does. And in learning, whether an epidemic or an isolated but serious problem, perhaps we can all build solutions for this important part of Autism Action.
P.S. A special request… to date, my blog doesn’t host a lot of comments, although I always welcome them. This post is no different. Please tell me what you think. But, particularly here, think carefully about what you disclose. My blog, like many other places online, is public, and the internet has a long lifespan. Please exercise caution in sharing personal details. If you’re a teen or young adult, and you want to get active in this conversation, perhaps work with a parent or other trusted adult mentor to make sure that you are telling your important story without placing yourself at risk. 
Advertisements

One thought on “Sexuality and the AutismFamily

  1. I agree that sexuality is definitely an issue to be addressed. As a mom of a mildly autism spectrum teenage son, I have noted that in groups of parents, we do address this issue (gingerly). In my circle, our kids are growing up, but not really dating, and they're dealing with social skills issues. That said, we all wonder what's next. Undoubtedly, at some point our children are going to be out there in the world.

    I talk with my son about making good choices, but not every parent does. Since we “autism parents” do tend to be more involved in our kids lives, we have a great opportunity to talk about these things before our offspring fly away from us.

    Thank you for helping open this door.

    (I'm posting anonymously to protect my kid, not me!)

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