When I first strolled into Barnes and Noble with exactly this kind of project in mind—to survey the treatment of sex and sexuality in parents' guides about autism—the books that actually drew my eye first in the tiny and jumbled "Children with Special Needs" section were bizarre titles like Autism and the God Connection and The Complete Idiot's Guide to Indigo Children. Later I looked up what exactly an "indigo child" is supposed to be, and was fascinated by the phenomenon. These kinds of works that "spiritualize" disabled children, often with a distinctly New Age bent, are a subgenre unto themselves. In the particular bookstore in which I was standing, they were shuffled right in among diagnostic guides for professionals, picture books intended to explain disability to young children, and practical parenting guides. I wondered how all of these texts fit into a cohesive parent culture, and what that culture looks like.
In this post and my next one, I'm taking a quick look at a selection of four parents' guides on autism and Asperger syndrome, to see how sex, sexuality, and gender are addressed. This is not a book review, but an overview of how these topics are presented in literature intended for parents of adolescents. Do these texts contribute to the erasure of autistic sexuality? What do the books have to say about gender?
In Autism Life Skills, by Chantal Sicile-Kira, the first and only substantive discussion of sexuality is brought up in the context of bullying and abuse. Sexual and otherwise intimate relationships are not discussed in the chapter on "Social Relationships." The book doesn't offer any advice at all that addresses autistic sexuality in the context of healthy relationships, even though the author mentions off-handedly that sex is the topic she is asked about most frequently at autism conferences. As with the information on sex I found on the Autism Speaks website, the overall impression is that avoiding abuse or assault is the primary reason to educate autistic youth about sex.
Growing Up on the Spectrum, by Lisa Kern Koegel and Claire LaZebnik, has much more to offer on the topic of sexuality, with an entire sextion dedicated to "Making and Maintaining Successful Romantic Relationships." The two authors are an autism researcher and a novelist (who happens to have an autistic son), respectively. The format of the book is highly stylized, with each contributor's work designated by italic, bold, or regular text. LaZebnik the novelist offers personal anecdotes while Koegel grounds the text with professional advice. LaZebnik's son, Andrew, also offers his own stories throughout the book, though he is not credited as a co-author.
The "Romantic Relationships" section on the whole tries very hard to be meaningful and thorough. Koegel even makes an attempt at including same-sex relationships, remarking:
One quick note: in both this chapter and the following one on sexuality, we often talk about the "opposite sex." We're simply using this a short-hand for any romantic object—it's important to remember that as far as we know, the prevalence of homosexuality is the same for people on the spectrum as it is for typical people. Any advice we have about romantic or sexual relationships is as true for a homosexual relationship as it would be for a heterosexual one...
I don't see why, if the authors understand the problematic nature of talking about "the opposite sex" they would persist in using the phrase as "shorthand." It's still heterocentric. While I nonetheless have to appreciate the gesture of nodding toward inclusion—only because queer autists are usually just erased—homosexual relationships are not the same as heterosexual relationships. There is advice to offer specific to gay experiences, not just in the realm of sex and romantic relationships but with regard to social skills in general. Homophobia is everywhere, and while every guide I've looked at includes some discussion of bullying, none of them address homophobia and they certainly don't address transphobia.
When it comes to gender, the entire book is as normative as can be. Offering advice on talking to girls about their appearance and "looking attractive," Koegel recommends that parents look to fashion magazines to give their daughters a template. The section on sexual and romantic relationships includes several pages on puberty, and just like in Asperger's and Girls, shaving comes up, this time couched in even more troubling language.
...for girls, hair starts growing in lots of socially unacceptable places (well, unacceptable in our society—in Europe, she can probably get away with hairy armpits). Your daughter needs to learn to shave her underarms (the hair there can harbor bacteria and lead to body odor) and her legs. If you find she just isn't remembering to shave, start a self-management program. Shaving needs to be a regular part of her routine...
The passage doesn't say "Let your daughter know that not shaving can lead to problems with her peers because women are expected to shave." (I don't even understand the inclusion of the "bacteria" remark; the authors don't ever suggest that men shave their underarms for the sake of cleanliness.) The passage says "Your daughter has to shave because our society considers body hair on females unacceptable. Find a way to make her do it." Many girls and women shave; that's fine. But in this case, in this hypothetical exchange between parent and daughter, what if the daughter doesn't want to perform normative femininity? What if she can't? What if she's masculine? What if this "daughter" is really a son? Beyond just tacitly accepting normative gender roles, the authors erase the experiences of and participate in the oppression of non gender normative autists.
The marginalization continues in another chapter that directly addresses "Walking Out the Door Looking Good." By "good" the authors (by their own admission) mean more or less like everyone else. "An easy way to stick out like a sore thumb, without even having to say anything, is by looking different from the other kids." The authors do address basic hygiene like bathing, but they go much further when it comes to things like clothing and makeup. Koegel specfically really dwells on the topic of makeup, conceding that "it's hardly a requirement" but still urging parents to
...talk to your daughter about wearing a little for special occasions, like school parties or commencement. We worked with a college student who never wore makeup and didn't seem to care about it at all. Years later she visited to say hello and had a dozen or so long and unattractive whiskers on her face and still no makeup... Again, teaching your child to use a little strategically applied makeup can help her fit in and look like her peers.
Koegel advises parents to invite a typical friend over for a "game of makeover" after which they can "buy both your daughter and her friend little gifts of cosmetics—your daughter will then have something you can urge her to wear for special occasions."
I included the lines about the college student because they confuse me a little (What's the point of the anecdote, exactly? There's no remark on how a few "whiskers" have negatively affected the woman's life) and because I flinched while reading it. I felt like the student could have been me. But here's the thing: I don't wear makeup or undertake any other trappings of normative femininity because I'm a butch lesbian. How awkward, feeling like I have to shout it, but that's the effect of this kind of writing. What about the girls who are butch? Or who just don't want to wear makeup for any reason? What about the boys who do want to wear makeup? I find myself reacting so stridently because the markers of my identity aren't just being erased before my eyes, they're being dismissed as socially "unacceptable."
Resisting the cultural fixation on appearance and rigid gender roles isn't some kind of "larger fight" separate from the issues of raising and guiding autistic youth. Autists are part of the same society and subject to the same institutional structures as non-autistic people, and we have just as much of a stake in resistance. When the body of literature and knowledge that seeks to address autistic people leaves out discussions of gender—and accepts and reinforces sexist, heterocentric, and transphobic ideologies—it excludes and oppresses members of the very population that it purports to serve.