Autism and Puberty: What You Need to Know
By Shannon Des Roc... on July 25, 2013
BlogHer Original Post
I am officially the parent of not one but two adolescents. Of two young people hard-wired to vacillate between sweetness and raging defiance. To make matters even more interesting, my son Leo has an autism diagnosis, my daughter Iz doesn’t. The final complication: Though the Internet overflows with advice and perspectives for kids like Iz, I've had a hard time finding really good puberty resources for kids like my son -- kids who communicate and often behave atypically.
Note that I wrote "really good" resources, because Googling 'autism' and 'puberty' returns almost a million hits. Problem is, most of those hits revolve around what my son's puberty is going to be like for me, and since I've already gone through puberty, that is a secondary concern. I need to know what puberty is going to be like for Leo, what the best resources are to help him understand all the changes that are happening to him -- including how to avoid shaming him for his natural development and teach him the appropriate way to direct any emerging sexual urges.
Unfortunately, most autism and puberty blog posts from parent perspectives tend to back away from the frank talk and information that kids of all abilities deserve. A recurring theme of these blogs is that “talking about growing up is fine, and not talking about sexuality or sex is also fine.” This attitude is dangerous. It doesn't do a child any good to teach about genitals getting hairy, yet not tell that child what those genitals are getting ready to do and where and when it is appropriate to be doing such genitally-oriented things. It's not a great idea for any kid to be sexually feral.
So what to do? As I do with most things autism-related, I went looking for resources from three groups -- autistic advocates, autism experts, and autism parents.
Laura Shumaker employs humor and acceptance in writing about parenting her autistic son Matthew through puberty. Her story Adolesence recommends the following strategies:
Ask your child’s pediatrician or developmental specialist talk to your child about puberty candidly. The impact of the message depends on the messenger!
Be open to questions about puberty, no matter how crudely and honestly they are expressed.
Autism expert Peter Gerhardt strongly recommends an education-sooner approach, noting that,
“Sexuality education should be proactive. [...] most learners with a developmental disability receive sexuality education only after having engaged in sexual behavior that is considered inappropriate, offensive or potentially dangerous. This may be considered somewhat akin to closing the barn door after the horse has run.”
Autistic advocate Caroline Narby takes the topic further -- urging discussion not only of sexuality but of sex itself, and of sexual orientations as well:
“why wouldn't sexual education focus at least somewhat "on the physical act of having sex"? How can one ensure that sex is safe if one doesn't understand its mechanics? What about pleasure? What about the multiplicity of sexual orientations, what about sex as an intimate act, what about sex as something fun?”
It's hard for most parents to have these talks with our kids, especially if communication is an issue. But these talks -- whatever form they take -- are absolutely critical. While some autistics are asexual, most are sexual beings. They need to know what their body can do, and as parents, we need to do our best to give them the skills to deal with sexual situations both positive and negative.
But puberty is not just about sex. It's also about a changing sense of self, and that means it's also really important to do everything possible to encourage our teens’ self-esteem. No matter how we are able to communicate with our children, we need to presume competence on their behalf, include them in conversations about them, and let them know we have their back while they get to know their new selves. As autistic advocate Donna Williams writes in her essay Puberty With Autism When You Are Functionally Non-Verbal:
"Whatever the challenges, they are always easier when we like ourselves for this calms the wildness and gives us a better hold on the reins of volition."
"The key in all these disputes, says Abraham, is not to argue with your teen about being angry. Help them understand why they're angry. 'That's something parents can remind themselves about when they see their children struggling with these things. The teenagers are building problem-solving skills and coping skills' that they can rely on for a lifetime, she says. They're becoming stronger people."
And puberty is also a time for those of us who write about our kids to think about their privacy, to ask our kids how they feel about being featured, or to consider how they feel about their stories being in the public eye. Different parents have different takes. Autism parent Kristina Chew keeps what I consider a celebratory daily record about her family, including her teen son Charlie, whereas another role-model autism parent, Emily Willingham, decided to stop writing about her son entirely as he approached adolescence.
I understand and respect both approaches, though I personally lean more towards Kristina's thoughtful, love-filled depictions of her family's joys and challenges. I believe that, in a world which rarely acknowledges anything positive about families like mine, it's my duty to share how awesome kids young men like Leo and Charlie can be, how families like ours work. People should be able to catch glimpses of our shared magical moments, like the nights Leo's still-boyish-for-now head droops and then rests heavily on my shoulder as he falls asleep. I know that, like puberty itself, such moments won't last forever, and I want to treasure them -- and Leo letting them happen -- as long as I can.
Additional resources for autism & puberty:
- UU Our Whole Lives Lifespan Sexuality Education Curricula
- The Girls' Guide to Growing Up
- Wrong Planet: Adolescent Autism Forums
Shannon Des Roches Rosa didn't know "that feeling" was called an orgasm until her late teens, so is a firm believer in frank sex ed for adolescents. She writes and holds various editorial reins at ThinkingAutismGuide.com, BlogHer.com, and Squidalicious.com.
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