Double Rainbow: A Peek at Autism Speaks

You're right, Autism Speaks, it is time to listen. So hush up.

*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.

Previously: Adam: "More like a child than anything else," Stepping Back

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Comments

6 comments have been made. Post a comment.

Where do I begin

I REALLY don't like Autism Speaks and I'm glad you brought this topic up. Nothing dehumanizes autistic people more than this organization which is supposed to raise awareness. Instead of promoting acceptance of autistic people as human beings portrays autism as a horrible disease that needs to be cured.

One thing that it most importantly fails to address is that autism does not only affect kids - it has been around for a long time (despite what anti-vaccine advocates want you to believe) and these kids do grow up to be real adults with real adult feelings, emotions, and desires. As you said, everything they put out is directed at parents of kids with autism. To me, they really don't offer any solutions or real techniques in dealing with autism. It seems as if all of their funding goes to offensive advertising and "research" (while research is important it is overwhelmingly obvious that people with autism need more affordable community services and support, rather than a long term cure).

I had never seen that section that you posted but after reading it I am even MORE furious at them. Instead of offering support in confronting sexuality and promoting self expression, it simply teaches parents how to make their kids more socially acceptable and completely ignores the fact that people with autism are real people that CAN think for themselves. It seems to me like all of their research is for naught - and they really don't know a thing about autism.

It is upsetting that the biggest and most noticeable organization for autism "awareness" is so offensive and degrading to autistic people. They are truly responsible for shaping people's views of autism and they do an extremely poor job of it.

Sorry for the rant. I have some major problems with this organization and I'm really glad you put this out there. I've disliked them from the very first time I heard of them.

Autism Speaks

As the mother of a "pre-teen" boy on the Autism spectrum, this was particularly interesting to me. My son is not "impaired" to the point of being completely dependent on care-givers. Therefore, he has and will continue to have peer relationships with other (presumably "normal") kids.
As any parent of a tween can attest to, many conversations, whispers, texts, etc revolve around sex--whether the information is correct or not is up to us as parents. This doesn't change when the child has ASD. If anything, it's even more important because these kids need a lot more reiteration to understand concepts that others pick up naturally.
I must confess that I haven't given much thought to bringing up gender identity issues and sexual orientation issues with my son, but I certainly can see that those topics are important additions to any sexual education.
Autism Speaks doesn't speak for everyone with ASD. Nor should it. The width and breadth of Autism is what makes it, and those with it, so special. No one case is the same as any other, just as one person's sexuality is not the same as any other. We are all part of the large and lovely tapestry of life, and the more understanding, open-mindedness, and compassion we can show along the way, the better off we will all be.

I will say that, as an

I will say that, as an Asperger's self-advocate, college coach for students with AS, and owner of my own business, I had always thought Autism Speaks was the epitome of all evil and the opposite of everything I could ever stand for.

In recent times, however, I have had the opportunity to speak on an autism panel sponsored by Autism Speaks at the United Nations, as a self-advocate, and have been asked to participate in their Communications Committee, which directly influences the public campaigns of Autism Speaks.

This has put me into direct contact with the people who work at the organization, and they all do differ vastly from the overarching image that exists of Autism Speaks. Most of them have a loved one on the spectrum, and are genuinely working to improve the lives of all people on the spectrum--including adults--and do NOT agree with or perpetuate the "cure/disease" model that AS is known for (a model that was created by the founders and that is presently being moved away from by AS as a whole).

Is there still a lot of work to be done? Of course there is. But the fact that they have taken even small strides to listen to the voices of adults on the spectrum is progress...and a sign of the progress still to be made.

I also speak frankly and openly about my sexuality and dating issues as a woman on the spectrum (I've often been referred to as "the Aspie Dr. Ruth" because of the questions folks ask me that they're afraid to ask anyone else, and at the moment, I'm writing a book about my experiences, actually), and have been asked to write about such subjects for AS' blog.

Again, obviously there is a long way to go, but I just wanted to show that sometimes, in addition to protesting on the outside, working from the inside to affect change in an organization such as this can really make a big difference.

BBC Autism

I love this video by BBC newsround (their children's news programme) about autism: http://www.youtube.com/watch?v=FeGaffIJvHM

Autism Speaks

This has generally been the experience of my husband (he has Asperger's) and me with Autism Speaks, which is disappointing to say the least. We were referred there by a blogger I know and respect who has a young son with Asperger's; my husband was wanting to make a contribution to an organization that advocates for people on the autism spectrum. My friend was well beyond stunned to learn that her son could actually grow up and get married and have children of his own, upon hearing my husband has Asperger's... and is a husband... and parents... quite well, in fact. And that made me really sad, that the only information and education she's getting is teaching her that all she can do is make her son fit in as best as she can and that he's never going to have a "normal" life. What in the world is a normal life, anyway??

AS doesn't speak for me, but neither do arrogant fellow HFs

As a person with mild Aspergers (so, on the far "high-functioning" end of the spectrum) who, nevertheless, sympathizes with parents of kids who are so low-functioning they'll need caregivers the rest of their lives, I think that the HF autistics who have the abilities to lead "normal" lives and want the strategies that make that possible, and the parents of LF kids who understandably wish their kid had the ability to learn speech and be potty-trained should just start separate groups and stop trying to speak for each other by claiming to speak for all of "autism." Yeah, it's condescending as fuck when non-autistics (I hate the term "neurotypical") of any stripe - parents/relatives of autistics or not - try to speak for me or push a cure on me I don't want, but I also think some of my fellow HF people need to learn that not every frustrated parent is Jenny McCarthy and that it doesn't make you "privilege-denying" if you're upset that your kid is never going to be able to live on his/her own. (Which is not what I'm accusing this article of - I think it's great! - but I do think it's a problem with a lot of the Aspergers/HF activism out there.)

Autism Speaks really needs to change their name, though, since they seem to be based on the idea that autistic people don't have a right to speak for themselves. And either way, this shaming of autism and treating it like a death sentence needs to stop - that doesn't help people on EITHER end of the spectrum, OR their parents.