Autism rights/neurodiversity is the radical notion that autistics are people.
As per its header, this blog is dedicated to celebrating and exploring “sex, (a/)sexuality, and consent among people with mental illnesses and/or developmental disabilities.” Populations like ours face sky-high rates of sexual violence coupled with bigoted misconceptions about what our sexualities, sexual behavior, desire, and consent are “allowed” to look like. Different stereotypes apply to differing sorts of neurodivergence, but the final message is clear: the sexualities of developmentally disabled and/or mentally ill people are supposed to be anyone’s but our own.
In this climate, Neurodivergent Sexuality seeks to be a place where mentally ill/developmentally disabled people have to option of speaking openly about our own relationships to sex and hearing what other people have to say. Anyone is welcome to follow, but in the spirit of the blog, we’re only seeking submissions from people who identify as having at least one developmental disability or mental illness (full submission guidelines here). When you send in your submission, you have the option to “tag” it with various iterations of your clinical labels. This helps other users search our site, but it also means that your post might wind up in many other people’s tracked tags. This is great for visibility (and “reclaiming the autism tag” if that’s your thing), but whether or not you want to tag is entirely up to you.
We are so, so excited, you guys.
Yet another Autism Speaks rant
I don’t know why I keep doing this. Well, I do, I guess. The facts need to get out there, and people also need to know that autistic people’s negativity towards Autism Speaks is well-grounded and based in fact. It’s not just some irrational negativity.
My rant, adapted from a message board debate:
The “I Am was offensive to a great many autistic people, and therefore warranted an apology. Whether the majority of their supporters supported it or not is irrelevant; the fact is it was hurtful to some people.
Any film is at best an approximation of “reality,” and I don’t think that was a fair representation even of those particular children. Are you aware that the families filmed were told not to clean their houses, dress themselves nicely, follow their children’s usual therapy schedules for the week prior, etc. before filming in the hopes to make them appear more hopeless? That’s not reality.
Furthermore, the major problem with the Autism Every Day video is that a parent—who then held a high position within the organization—talks about how some days she thinks of killing her daughter. She is presented sympathetically. That is a major problem!
Many autistic people—and not just those who are deemed “low-functioning,” BTW—do have some behavior challenges due to autistic impairments. I did, and still do, though I am not generally deemed low-functioning. But that doesn’t mean that those moments of difficulty represent the entirety of our lives! I have to say that I would be extremely upset if my parents went out of their way to make my life more difficult than usual, filmed me while I was having a meltdown, and then used that footage in a film that suggests that autistic people’s lives are only suffering and meltdowns. And used my suffering to raise money. That, to me, is unconscionable.
There is a similar problem, BTW, with the “I Am Autism” video, which uses footage of real autistic people—some of them adults who may not have consented to their images being used in that way. I find that incredibly insulting and problematic. To use people’s images to suggest that their disability is horrible, causes parents to divorce, etc…this is not okay. At all. And taking down the video from the web after a lot of people raise a fuss doesn’t make it okay.
It’s not simply a matter of supporting research or not. “Research” is a pretty broad category. I’m not going to say that no research funded by Autism Speaks is useful, because that’s not true. But broadly speaking their research priorities are not where I think they should be. And I resent that they are using my existence—because I am included in their “1 in 110” stats—and that of people I care about to raise money when very little of that money is going towards concrete gains for autistic people. I have the right to object, because they are claiming to speak for me while presenting problematic media representations and all but ignoring the bread-and-butter issues that people with disabilities face today.
And even though they may have taken down “I Am Autism,” I don’t think that we’ve seen the end of bad media representations from them. I believe they are still using the whole “Chances of your child being in a fatal car accident: 1 in 24,000. Chances of your child having autism: 1 in 110” schtick, which I object to. It may not be as obviously horrendous as “I Am Autism,” but I still object to it. I think their style of “awareness” promotes fear-mongering rather than genuine understanding, and I am worried that they are increasingly becoming “the face of autism” to the American public. And I think that even people who aren’t completely on board with neurodiversity should be worried, too. It is never a good thing for one organization to monopolize the public discourse on any given issue. Especially when, in this case, that often comes at the expense of actual autistic people being heard. I’ve seen way too many articles ostensibly about autism or related issues in which not one single autistic person is quoted. Oftentimes those same articles do quote an Autism Speaks representative, sometimes saying okay things, sometimes not. But to my mind, if Autism Speaks was really interested in including autistic voices, they would tell reporters to talk to autistic people too in writing these articles/news segments. Even autistic people hand-picked by them.
But I have yet to see strong evidence that they are genuinely interested in including autistic adults in meaningful ways.
My refutation to Ann Jurecic’s “Neurodiversity article”
Because Savannah asked, and I’ve wanted to share it for a while. Personal identifying information removed, though my identity is still probably really obvious to anyone who knows me and reads this tumblr.
“I am diagnosed with Asperger’s Syndrome. I have been fairly successful in academic writing thus far, if I may put modesty aside for a moment. I am a first-year graduate student at the History Department at [University]. Last spring I graduated (magna cum laude) from [College]. My honors thesis won a departmental award. In my first semester at [College], I placed second in a college-wide competition for the best paper produced in a first year composition class. (This is out of about 220 students.)
I really don’t like leading off with this kind of self-aggrandizing, and normally I would do no such thing. However, I felt this information pertinent, given the subject of your article and my own objections to it. I don’t think that my academic achievements make me any better than anyone else, including autistic people who struggle with writing more than I do, but I did feel as though your article almost seems to imply that autistic people can’t be successful academic writers by the standard terms. Perhaps this was not your intent, but I nevertheless thought I would dispel that myth through a brief capitulation of my own achievements. Nor am I necessarily exceptional; there are many people with an autism spectrum diagnosis who have succeeded in academic writing at the undergraduate and even graduate level.
I’d like to mention as well that I have some familiarity with undergraduate writing aside from my own. I worked at two years as a tutor at [College] Center, and I have also graded undergraduate student papers in upper-division History courses for the past two quarters at [University]. While obviously my experiences with undergraduate writing are not nearly as extensive as your own, I do have some idea of the typical skill level of undergraduates.
My objections to your article are as thus:
-Your discussion of “Gregory” seems to me a clear violation of privacy. He is probably identifiable to people who were in your composition class, and he himself might someday come across the article if he has not already.
-Despite its acknowledgment at the end of the article that all autistic students are different (435), your article as a whole poses an overgeneralized view of autistic people who are a heterogeneous population. I have seen, as I’m sure you have, many a poorly written paper by presumably neurotypical students. Yet I doubt that you, or “College English,” or anyone else, would consider it acceptable to generalize about the neurologies and writing abilities of all neurotypical students based only on a single student. But this is precisely what you do with Gregory when you pose him as a case study. This presents the possibility for the perpetuation of stereotypes and misinformation. Many professors are, unfortunately, ignorant on the topic of the autism spectrum. If I were to disclose to a professor whose only knowledge base of Asperger’s/autism was your article, I doubt very much that they would believe me.
Autistic people have a wide variety of personalities and abilities. I personally am far more comfortable communicating in text than in speech, and I know many other autistic people feel the same. But some autistic people feel precisely the opposite. Perhaps Gregory is in the second group. I do not know, but I caution against generalizations. Uneven skill patterns are very common amongst autistic people.
-I don’t think it is very fruitful to try and read the diagnostic criteria for autism into writings of people who may be autistic. It seems to me that your “diagnosis” of Gregory might have affected your evaluation of his writings. After all, it is hardly unusual for a student to write a paper with poor organization and logic and to not take the audience into proper account. Why assume that these problems are simply the result of neurological “deficits”? Taking a medicalized perspective of autism, as you do in the article, may not be as helpful as you believe it to be. You may be aware that many autistic people, myself included, feel that the medicalized terminology of autism (such as “mindblindness,” for instance) does not adequately represent the experience of being autistic. These heuristic terms devised by non-autistic people are imperfect at best and flat-out incorrect at worst. By relying too heavily on them, your article ceases to be about autistic people and starts being about your own interpretations of other non-autistic people’s interpretations of autistic people.
-In suggesting that autistic people may need an entirely framework for writing than the standard one, I think you fall into the “Autistics are from Mars, non-autistics are from Venus” trap (as I like to call it). Both populations are highly varied, and may share many common needs. I do not understand, for instance, why you think the standard linear essay to be unsuitable for autistic people. If anything, I would think the familiar pattern and structure would be helpful to an autistic student who struggles with writing. In your eagerness to be of help to autistic students, I think you run the risk of forgetting that in many ways we are not so different from our neurotypical peers.
-As an advocate of neurodiversity, I am uncomfortable with your use of the term, particularly as a title to your article. I do not feel you fully engage with the political ideas of our intellectual and political movement. You certainly don’t seem to fully agree with it. So I am confused as to why you would appropriate this term for your own use.
-Your dismissal of published autistic writings on the basis of their possible inauthenticity is potentially problematic. We historians do not discount the immense value of published slave narratives simply because many of them were published, edited, or contain a forward by white abolitionists. Presumably you feel that your own article is a fair and accurate representation of your own writing abilities, despite the fact that you undoubtedly received help from peer reviewers and others in composing it. Why, then, do you dismiss published autistic narratives, many of which are not co-authored?
-The assumption that autistic people are just now entering colleges and universities in significant numbers is false. (You repeat this assertion in the January 2008 issue of “College English.”) The “epidemic” to which you refer to is largely an artifact of changes in diagnostic criteria and processes. We have always been in colleges. There might even be autistic faculty members amongst your colleagues (and not just in science and engineering departments). This may seem like a minor point, but it is actually essential.
-Related to this point, you write in your response that “we should expect that most students on the autism spectrum will identify as such” (324). This is not necessarily correct. As an undergraduate student I certainly did not disclose to every single professor I encountered. In fact, more often than not, I didn’t. Other autistic students I know also do not disclose to every professor. Additionally, it is not necessarily uncommon for a student to remain undiagnosed until their college years. This is especially true of women and people from underprivileged backgrounds.
-This is my most pervasive objection to the article: it treats autistic people as an Other. As an autistic person I felt highly uncomfortable while reading it. It is very common for authors who write articles discussing autistic people’s alleged lack of empathy to fail to consider our own possible reactions to these articles. Such is the case for your own article.
I hope that you take this in the constructive spirit in which it was intended. I think it is certainly a good thing, on aggregate, for people in the humanities to approach the issue of autism and neurodiversity. I am troubled, however, about the particular vantage point which your article assumes.”
So…yeah. This was about as polite as I could make it (and probably overly compromising at parts, frankly). But I guess Prof. Jurecic couldn’t take the criticism.
It was a big revelation for me when I realized that it wasn’t autism that caused my depression, social anxiety, and subsequent substance abuse. It was internalized ableism.
It was doctors, psychiatrists, therapists, my parents, writing books about, doing studies on, telling ME that I was worthless, that I couldn’t love, that I was the broken version of a real, “normal” child because I was stolen by autism, something that was a part of me, something that I couldn’t control.
And that “autism” was something I wish would go away with all my heart.
Only now am I starting to reclaim myself, and realize I am not worthless or bad or defective. So, please, do not tell me that I am. I refuse to believe it anymore.
“Neurodiversity Follow Friday”
Basically, the idea is to make a list of Tumblr bloggers who support neurodiversity (broader neurodiversity, that is) - the idea that brain/mind variations like autism are not inherently bad or need to be prevented or “cured.”
There’s a lot of anti-autistic bigotry on the Internet (as in real life), and neurotypical supremacism, but there’s also some great positive examples. The intention here is to list blogs that don’t engage in that, and actually fight it. Or rather, people who identify as pro-neurodiversity, whether they write about it or not, whether they identify as Autistic, or have an attention deficit, or obsessive-compulsive tendencies, et cetera.
So, pass this around, if you want to be listed, put your URL in our askbox and on Friday the 6th we’ll do a list of everyone so far. This will be weekly, of course.
Got a response to my blog comment on Cafe Press
And I’m thoroughly Disappointed…
Thank you for your blog comment; we appreciate you taking the time to share your thoughts on our Autism Awareness program. Over the past 24 hours we’ve received many other messages expressing concern for our decision to donate a percent of proceeds to Autism Speaks.
The response we’ve received takes us a bit by surprise, as this is our third year partnering with Autism Speaks and the first year we’ve heard concerns voiced about specific organizations or their approaches. That said, as a community-based business we feel it is important to listen and respond to our users’ concerns. You helped us to understand an adjustment to this program is needed. We have learned a lot about Autism in the process and feel privileged to be a part of the national conversation about supports for individuals and families facing the challenge of Autism.
For this year we’ve already made a commitment to Autism Speaks, and we do not want to go back on our promise to them, but we do want to add another charitable organization to split the money donated and balance our support to other Autism related good works. We’re asking our community to choose the specific Autism support charity that will receive ½ of the money raised through sales of Autism related goods.
If you’re interested in voting on this additional charitable initiative, or want to suggest one not on our list, please visit http://www.surveymonkey.com/s/X8QNK3N.
While we know this may not answer or solve all of your concerns, we hope it helps to show our commitment to the community and to a dialogue about Autism support. Please know that we have nothing but the best intentions with our Autism Awareness donation plan and we hope you find our changes to the program palatable.
NO. This does not even REMOTELY address my and many other’s concerns. This still forces vendors that are vocally against Autism Speaks for the reasons we have outlined repeatedly to give to an organization they work against. True it’s 5% rather than 10%, but this is still forcing a vendor to support an organization with which they disagree.
If we are to compromise, it should be that Cafe Press would allow the Vendors to opt out or opt for an alternative Charity. That is the only solution- beyond them dumping Autism Speaks, which would be a long shot- that will address the concerns that we have been sending.
Feel free to reblog.