Double Rainbow: Parent Guides, Part 1

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. 

Previously: Autism and Masculinity, Valentine's Day Fluff

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Comments

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As a parent of an autism

As a parent of an autism spectrum child I wanted to comment on this article. My son has moderate to severe SPD, which is an autism spectrum disorder. We first started suspecting auditory processing issues fairly early on but it wasn't until preschool that we started noticing the other processing issues.

Of course as a mother, I have frequently worried about how fulfilling my son's life will be growing up. Will he be able to enter into the world and maintain that independence? Will he ever find himself part of a loving relationship? Will he ever be able to make and maintain meaningful friendships? And I can guarantee that the last concern on my mind is what his sexual orientation will be when he grows into young adulthood and then later into adulthood. Maybe because that part isn't much of a concern to me. I'm hopeful that by the time he reaches that stage in life (he's currently in first grade) that acceptance of "alternative" orientations will be much more prevalent than it is now. I know that whatever orientation my son is/becomes (although I know it's controversial, I still find it hard to believe that a child so young can even fathom what sex even is. So I say "become" to illustrate that I tend to think of my son as more asexual now than anything else) that I will love him for the wonderful, loving, caring person that he is and support him with whatever decisions about gender identification he makes or has been born into. But right now he can't even understand why he can't marry Mommy when he grows up.

However what is apparent to me on a DAILY basis is my son's longing to belong, be loved, and fit in. He struggles constantly with trying to understand how his actions drive other children away. I hear his agony frequently and my heart breaks. I work hard to help him determine what his needs are and help him find ways to address his needs (sensory input, etc.) However time and again he will come home from school in tears because "no one will play with (him) at recess!" And while I absolutely adore my son's individuality, the painful truth is that children of all ages instinctively shy away from children who are "different." So we, along with his occupational therapist, the school social worker, speech therapist, psychologist, OT, and other professionals, are working with him to help him modify his behavior in a public setting that will help avoid behaviors which will be displeasing to other children (for instance my son likes to *really* roughhouse - a LOT - something that the other children in his class have voiced opposition to.) So it comes as no surprise to see passages in these kinds of books that attempt to help ease what other children perceive as "different."

While there are most definitely girls who choose to avoid things like shaving or wearing make-up, and most definetly there are people like you and I that have no problem with those who prefer natural vs cosmetics (by the way, I know many NON "butch lesbian"'s that prefer this simplistic approach - it's not ONLY butch lesbians that would rather not shave or wear make-up) there is most definitely a culture around those things when girls start to approach their teen years and not participating in these activities is sure to make a girl stand out from the crowd. If she has autism, she already IS standing out from the crowd. I can completely understand why someone would put these types of suggestions into a book about autism. It's not there to insult butch lesbians or any other member of the LBGT community. It's not in there to make a political statement. It's there to try to help as many parents with autistic children who hear their child's broken heart on a daily basis because they don't fit in.

Now I can tell my son over and over to be happy with who he is (and I do) but to completely ignore the social repercussions of that individualism in an elementary or even Jr. High or high school environment is at minimum ignoring one of the biggest issues in an autistic's life and at it's worst can be devastating.

However my biggest issue with your "not book review" book review is that you seem to really focus in on the fact that they don't specifically address gender identification other than a nod that alternative identifications exist. Your critique of this fact makes me wonder if you realized you were reading a book about autism instead of gender identity. I would NOT expect a book about autism in general to spend much time on this subject at all. Most parents reading about autism are doing so when their child is at far too young of an age to even understand what sexual identity is. And yes, while it's ironic and actually somewhat funny that they included the fact that more hair under your arms will create more bacteria for a female and completely neglected this statement for males, I find it irritating that you seem to, again, completely forget that this book is a general "how to." Sexual identity is much to complex of an issue (ESPECIALLY for autistics) to address it more in depth than they did in a book that's meant as a general overview. I'm sure there's not much if anything in there about flirting, dating or marriage either. These topics are simply too complex to cover in a paragraph or two (or even a chapter) while trying to maintain the original purpose of the book.

In the end if he feels better in dresses and make-up when he becomes a teen then I will shop for dresses with him and teach him how to apply eyeliner and lipstick. But I think the boundaries for male-male relationships, or female-female or anything in between remain relatively the same. Respect the person that you're with, respect yourself, and maintain honesty and foster trust. Expecting the authors to dismantle the intricacies beyond that is asking for a recipe for each and every possible partnership and that is simply far too big of a task when that is not the specific subject of the book.

I am autistic, in case that

I am autistic, in case that somehow isn't clear.

A book review covers the book as the whole. I'm critiquing a particular aspect of these books; that is, their treatment of sex, sexuality, and gender. That's the focus of this guest blog series: the intersection of autism, gender, and sexuality.

I'm invested in questioning assumptions about what autistic people can and cannot handle, because those assumptions speak to more fundamental questions about sexuality and gender. Why are sexual orientations and gender identities other than straight and cis considered issues too "complex" to be included in an overview of general information? Because of heteronormativity. Heterosexuality is viewed as basic and default, while queer identities are othered and marginalized--and with them, all of the autistic people, including adolescents, who are also queer. Talk about not being able to "fit in."

I'm not a butch lesbian...as

I'm not a butch lesbian...as you correctly note, many women who are not butch or lesbian don't wear makeup either. I know the social expectations. I know the consequences. I don't wear makeup because the consequences of doing it are WORSE. It's simply intolerable. It negatively impacts my ability to function and be comfortable in my body in ways far, far more important than fitting into our culture's rather screwed up views of normal female-hood.

If it's cost me friends, those are people I don't want to be friends with. If it's cost me respect, those are people who I can't respect anyway, and who would probably disrespect me for other, far more serious reasons than my aversion to foundation. If it's cost me romantic opportunities, those were "opportunities" I didn't really want, with people who have no respect for MY need for physical comfort and freedom. (In fact, the last person I was romantically involved with said that he liked it that I didn't wear any--that it somehow wouldn't fit my personality if I did.)

I work in a field in which no one gives a damn one way or another (indeed, I could not work in a field in which they did). I keep up with hygiene and grooming in every way necessary to stay clean, presentable, and healthy (including even occasional eyebrow waxes). But being healthy and functioning at my best means NOT wearing makeup and not being pressured or obligated into it.

"And while I absolutely adore

"And while I absolutely adore my son's individuality, the painful truth is that children of all ages instinctively shy away from children who are "different.""

This is not true at all. Children have to learn to fear difference.

As a preschooler, I happily played with a foreign kid who didn't share a common language with me, and she happily played with me. (Once her father told her I was asking to play with her, which was the sum total of his facilitation of the play.) If it didn't even matter that we couldn't talk to each other, the fact that I was undiagnosed autistic and acted weird mattered even less.

So often, I hear people with visible disabilities talking about preschoolers who reacted to their disabilities with open curiosity, saying things like 'mommy, why is that guy in a wheelchair?' And instead of getting a calm and honest answer, or being encouraged to ask the disabled person themselves, they are shushed and told not to talk about it. When they do ask the disabled person themselves, they are often dragged away and told they shouldn't ask people questions like that.

That's how kids learn to fear difference - because adults teach them that difference is something to fear. It's not instinctive at all.

I have to say that reading

I have to say that reading about these books actually made me feel ill. In some ways I'm glad that I didn't receive my Asperger's diagnosis until a few weeks ago (I'm in my late twenties) -- I shudder at the thought of how much worse my childhood and youth would have been had my parents read books like these. However, as my parents were hippies and pretty "weird" themselves, I'm not entirely convinced they would have followed such "advice."

It bothers me that so many writers on autism, including the so-called autism "experts," seem to think that all autistic people are completely oblivious to social norms, and if they do not follow them, it's simply because they do not know about them. This may be true for some people, but not for all (and even for those who don't pick up on these social norms, it's not like they're just going to start slavishly following them once "educated" about them). When I was younger, I was fully aware that leg-shaving and make-up-wearing were social norms for women. I chose not to do either of those things -- and continue to choose not to do so -- because I did not think they were right for me, and I did not want to do them. Many non-autistic women have made the same decision. Why should my decision be seen as any different?

My goal in interrogating

My goal in interrogating books like these is to focus on the treatment of sexuality and gender specifically. I'm not trying to make the books seem "disgusting;" they're actually not outrageous or unusual with regard to their approach to gender, which is to me is the sad part.

You're right that autistic people are viewed as blank slates when it comes to social skills--and it's true that we have a hard time, to varying degrees, discerning what is considered socially appropriate. (Even though, as you point out, we also possess agency and can make our own decisions.)

Because they're addressing a population that is assumed to be wholly ignorant of social mores, books like these guides are especially telling of how mainstream culture on the whole really views non-straight and non-cis gendered people. Fundamental cultural assumptions and expectations are laid bare in these books because they set out to address the basics of "appropriate" behavior from the ground up. And what they show--surprise, surprise--is that there still isn't a place for non-heterosexual or trans* behaviors in the current paradigm. Those are somehow "separate" issues to be dealt with at some later time, in separate spaces. But for queer autists--for any autists--our gender and sexuality are not separate from autism; both areas are inextricably linked to each other as part of our experiences and identities. That's the nature of intersectionality: different labels and dentities are not experienced separately, as discrete spheres, but constantly interact with and inform each other. 

My not wanting to wear make

My not wanting to wear make up and not participate in patriarchal beauty standards has nothing to do with me being an aspie and everything to do with me being a feminist. Autistic people can be feminist to. Asperger people are no different in that way we are allowed to have political opinions. And I do for the record like to wear make up every now and again, I just don't like the way foundation feels on my face (now that's my asperger's). I do, however shave my legs because of my asperger's. I don't care for the tactile feeling of hair up against my jeans and it has nothing to do with the patriarch.

One of these days people will stop over analyzing and disceting autistic people and just leave us alone and treat us like human beings but this article is proof it isn't today.

Just as much as you find it strange we would rather being in our rooms sorting something or have a tendency to stare off into space without noticing during conversation we find your bigotry, bullying, and harrassment strange. Maybe instead of obsessing over our behavior...you should re-evaluate yours.

Oh man, that's depressing

First of all, for the record, I agree with you. They seemed to take the gender essentialism to a whole new level, not just saying "you're daughter's life will be easier if she complies" but going all the way to "she MUST comply whether she likes it or not." Ugh.

However, I find myself wondering if there was even the slightest nod to sensory issues. I find it troubling how often they are ignored. If someone is talking about things that should be optional as though they are not, it seems that sensory issues are being ignored yet again. I hardly ever shave my legs because doing so makes them itch so badly I want to tear my skin off. My refusal to wear makeup stems from feminism, personal expression, practicality, and sensory issues. I can feel makeup on my face, and I find it particularly uncomfortable.

Growing Up On the Spectrum

Growing Up On the Spectrum definitely does address sensory issues, but really only offers advice for accommodating those issues in relationship to clothing. Parents can help their kids shop for soft clothing without hard seams, cut the tags out of clothes, etc. They don't really have any advice for parents whose children have really intense sensory problems, or sensory issues that get in the way of behaviors that are viewed as non-negotiable. Children who can't stand the feeling of water running over their bodies or for whom brushing their teeth feels like biting a Brillo pad, for example.

Perhaps the authors just don't know what to say; I know I don't. My own sensitivities aren't intense or obvious enough for me to be able to comment. It does make me think about the emphasis placed on "fitting in." Modifying one's behavior to stand out less and appear more acceptable is helpful for those of us who can manage it--but what about autistic people who cannot ever begin to "fit in" to a society created by and for non-autists? If social conventions--even ones that we take for granted as "common sense"--aren't at least examined, where does that put people who just can't conform to them? I guess that's an age-old question, and one that certainly has far-reaching implications beyond its relevance to the autistic community.

Completely agree

First, I'd like to say that I love this series of posts.

The way that teenagers on the autistic spectrum are generally treated like blank slates, who only deviate from social norms because they 'don't know any better', is a huge problem. It incorrectly assumes a lack of agency, denies the autistic teenager freedom of choice that is often encouraged in their neurotypical peers, and completely erases far too many gender, political and personal identities to count. It teaches spectrum kids to value and follow peer pressure, while neurotypical kids quite rightly get the opposite. The overall message is essentially "Be yourself! Unless you're autistic."

I'm currently eighteen, and was offered Lisa Iland's oh so wonderful contribution to Aspergers and Girls as a potential source of advice a few years back. Fortunately fifteen year old me had enough of a brain to hand the book back with a firm "No thankyou", although it was a fair while before I realised just how problematic the piece is. At the time I just turned it down because I knew changing myself to fit in wouldn't solve my problems. I wanted to be accepted, yes- but I wanted to be accepted as, well, me.

Whatever a 'typical teenage girl' is supposed to be (I suspect it means something different in every school), I'm not it. I'm a Goth, for one thing, so my taste in music is way outside the top 40, and half the time I stand out before somebody's even had a chance to learn my name. And then there's my politics, my general geekiness, the fact that I read feminist blogs for fun, the fact that I've managed to embrace a couple of my aspie traits (I was always a textbook example of 'autistic child who talks like their Grandmother', and recently I've realised that I wouldn't actually change that). None of those traits are things I dislike or would change about myself. My insecurities come from elsewhere. Internalised ablism, for instance.

A lot of people believe that, as autistic people are usually outcast to begin with, we should try as hard as possible to match mainstream ideals as a form of damage control. I... really think this causes far more problems than it solves. For a start, going through life pretending to be somebody you are not does not lead to happiness. It may give the child more friends in the short term, but long term it's a recipe for self loathing, resentment, and depression. How can you like yourself and have self worth if you're constantly taught to exchange your own gender identity, ambitions, or personal image in favour of one your parents and peers have deemed more societally acceptable? All that tells you is "Who you are doesn't matter". It could even be argued that this advice teaches extreme passivity, as it effectively denies teenagers the right to stand up for their beliefs or choices.

It also teaches teenagers to value 'normality' in friends, as the advice always seems geared towards fitting in with the 'popular' crowd (and any alternatives, such as encouraging your outcast teen to befriend other outcasts, are mentioned with a 'dare I say it?' kind of tone, when they're mentioned at all). Is this a value we want people to grow up with? That the only worthwhile friends are those who are already popular and outwardly 'normal'? Really?

I can completely see where you're coming from in terms of sexuality, too. Yes, fewer people are LGBT than not, but that doesn't make their issues and needs any less important. When it comes to advice for girls on the spectrum, "talk about boys" is a common instruction. Obviously, this 'advice' is totally useless for lesbian/asexual girls and girls with a Y chromosome, but the books never so much as pay lip service to that fact. They never acknowledge that not all girls will be attracted to guys or able to talk about their attraction to guys, shutting out people who are in that very position.