Double Rainbow: A Peek at Autism Speaks
*Trigger warning for brief mention of suicide and infanticide*
Like Lydia over at Autistic Hoya, I'm tired, though not so much in the world-weary, soul-crushing sense as in the mundane I-need-to-nap-for-about-a-week sense.
A comment left on one of my previous posts brought up Autism Speaks and its infamy within the autistic community. Autism Speaks is an easy, easy target for criticism. And a literally huge one—it's the largest and best-funded autism "awareness" and "advocacy" (I kind of want to just call it "autism-themed") organization in the world. Autistic self-advocates rip into Autism Speaks every day because of the organization's silencing and dehumanizing rhetoric, and its focus on "curing" autism rather than dedicating its resources to practical support for autistic people. The organization puts forth slick television ads that portray autism as tragic and menacing, and—importantly—as a malicious entity unto itself, as an external threat. Autism Speaks is responsible for the short film Autism Every Day, (I've linked to a shortened version of the film) which features a mother talking about her desire to kill herself and her autistic daughter in front of her daughter. The interviews in Autism Every Day address—both directly and accidentally—very real and pressing institutional issues like the segregation of "special needs" children within schools, the lack of affordable and accessible support, a general lack of understanding and compassion within communities, and the pervasive construction of an "ideal" mother-child relationship as "joyful" and "easy." The video also neatly encapsulates everything that is damaging about Autism Speaks' rhetoric and agenda. Rather than addressing the aforementioned institutional problems, the organization centers the individual experiences of parents and care-givers, and silences autists by constructing us as pitiable and burdensome. It constructs autism as a tragic scourge that warrants panic and despair, and dedicates its efforts to eradicating autistic people via prevention or a "cure." It's unforgivably heinous to nonverbal people, as you've seen if you've watched the video I linked to.
Since I'm tired, and I haven't yet made it through enough Parenthood, Alphas, or Community to write up an intelligent post about autism on television (working on it, though!), I thought I'd comb through the resources on Autism Speaks' website to see what information they might offer regarding sex, gender, and sexuality. My initial assumption was, honestly, that I would find nothing at all. I was wrong—they offer a little bit of info.
I noticed right away that there are no links or categories frankly labeled "Sexuality" except for one link with the heading "Sexual Abuse" under the section "Autism Safety Project." As part of addressing sexual abuse, the organization urges parents to discuss sexuality with their children (the information on the site is overwhelmingly centered on children and addressed to non-autistic parents). The section includes the following passage by Peter F. Gerhardt, an "expert on applied research across the lifespan":
Although generally difficult to talk about in an open and honest manner, sex and sexuality are central to our understanding of ourselves as individuals and are integral to our individual determination of quality of life. Contrary to some preconceived notions about sexuality instruction it is not designed to titillate, arouse or excite and it does not focus primarily on the physical act of having sex. Sexuality instruction, instead, focuses first and foremost on personal safety and self knowledge. So while sexuality education may be both frightening and complex, it should be considered an integral element of a comprehensive transition plan assuming that the goal of such a plan education is to be a safe, competent, and confident adult. Perhaps surprisingly, sexuality education starts very early in life (differences between boys and girls; using the boys room or girls room, etc.) and continues well into adulthood (dating, marriage, and parenting). Comprehensive sexuality education consists of instruction in three distinct (yet interrelated) content areas: 1) Basic facts and personal safety; 2) Individual values and; 3) Social competence. As such, an instructional focus on some basic safety skills should be considered both necessary and appropriate for individuals on the autism spectrum. These skills would include, but not be limited to, closing and locking bathroom or stall doors, understanding personal privacy and who can and who cannot help you in the bathroom or with personal care skills, body part identification using adult terminology (e.g., penis instead of peepee), using public restrooms independently, the restriction of nudity to personal bathroom or bedroom, and the issue of personal space for both self and others. Sexuality education with learners with ASD is often regarded as a “problem because it is not an issue, or is an issue because it is seen as a problem.” (Koller, 2000, p. 126). In practice this means we generally ignore sexuality as it pertains to learners with ASD until it becomes a problem at which point we generally regard it as big problem. A more appropriate and, ideally, more effective approach is to address sexuality as just another, albeit complex, instructional focus, the teaching of which promotes the ability of the individual to be safer, more independent and more integrated into their own communities resulting in a more positive quality of life.
The entire tone of the passage positions sexual education as a means of preventing sex rather than demystifying it and assuring that it is safe and pleasurable. While it is true that disabled people are overwhelmingly more likely to be victims of sexual assault than non-disabled people, the information provided by Autism Speaks frames this as an individual rather than institutional problem. It's a matter of parents properly educating and safe-guarding their children, rather than the result of a culture that dehumanizes people with disabilities.
Also, none of the examples given of "basic skills" have anything to do with actually having sex. Having sex in itself doesn't have to be considered a "basic skill" or any kind of baseline assessment of adulthood—I don't want to fall into the trap of marginalizing asexuals—but 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? I know the presentation of sex as heteronormative, reproductive, and—above all—dangerous is a widespread problem, but it's particularly telling in this context. Faced with the assumption that autists are a kind "blank slate" because we cannot form our own views based on what we pick up from our environment, parents and professionals lay bare fundamental cultural beliefs about sex.
A version of the exact same excerpt appears in an online toolkit titled "Transition," in a section labeled "Health," (individual sections can be opened as PDFs) which addresses sexuality as something associated with puberty and reaching adolescence. The kit still presents sexual education as primarily preventative, but acknowledges that autistic people may express sexual desire. However, the language is tremendously heteronormative: sexual concepts are presented in terms of "boys" and "girls." It is suggested that an ideal sexual education curriculum include "the body, privacy, boundaries/touch, expressing affection, social skills, and exploitation prevention." Absolutely no mention is made of sexual orientation or identity (although the resource list includes a book by an openly gay autistic woman), and gender is completely ignored. What about same-sex attraction? What about asexuality? What about transgender experiences?
While Autism Speaks provides a little more information via its website than I anticipated, it is guilty of the same erasures that I have come to expect. Its presentation of autistic sexuality generally ignores autistic pleasure and desire, and specifically erases the experiences of queer people on the spectrum.
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