Neurodiversity Awareness at Ohio State

On Tuesday, April 20, ASAN-Central Ohio/Ohio State protested Autism Speaks and their ableist brand of autism awareness, their lack of autistic leadership, and their eugenic aims.

Nine protesters with signs on the south oval. Slogans include Nothing about us without us, I can speak for myself, People not puzzles, and No more exploitation, hate speech, eugenics. Pictured are Alex Jenkins, Cindy Selfe, Melanie Yergeau, Lauren Obermark, Bridget Goggin, Tom Fish, Erika Strandjord, Katie DeLuca, and Heather Thompson-Gillis.

The protest was held on the South Oval lawn of the Ohio State campus, and fifteen protesters distributed several hundred flyers that 1) dispelled popular autism myths and 2) described why Autism Speaks does not speak for autistic individuals. Protesters posted a dozen signs across the South Oval, including a puzzle piece graveyard, pictured below.

Blue puzzle pieces, crossed out in red, are posted in the grass. A pink sign behind them reads "I am a person, not a puzzle."

 Melanie Yergeau, sitting next to a crossed-out photo of Jenny McCarthy, holds a sign that reads "Listen to me, I have autism."

In large part, the event was a counter-demonstration: on April 1 and 2, the Ohio State Autism Speaks student chapter posted 100 signs to the campus lawn, each bearing "1 in 110" on the front and stereotypical, fear-inducing slogans on the back. Among the Autism Speaks slogans were the following:

• 80% of parents of children with autism get divorced
• In most cases, parents are given a diagnosis of autism and left to figure out the next steps on their own
• For every locked mind, there's a key to find
• Support autism research: Disturb the sound of silence
• Autism costs the nation over $35 billion per year

ASAN-Central Ohio/OSU protesters made clear their objections to such representations of autistic people, representations that promote autism as a marriage-ender, money-drainer, and soul-stealer. Several protesters formed a line and silently held posters, drawing the attention of those who walked past; others offered soda, cookies, and bouncy balls to passersby and engaged them in discussions about disability rights, self-advocacy, and autistic culture.

Prof. Cindy Selfe, faculty adviser, talks with a student

From left to right: Katie DeLuca (with sign that reads "people not puzzles"), Erika Strandjord (with sign that reads "every time you pity an autistic person, a kitten dies"), and Noranne Cochran (with sign).

Two student journalists interviewed and photographed protesters during the demonstration. Additionally, many autistic and non-autistic passersby expressed that they had learned something new and were glad to be educated. Early on during the protest, two leaders from the Autism Speaks student chapter made an appearance and approached ASAN members about the protest. ASAN reiterated its stance against neurobigotry.

Protesters form a circle around the sidewalk.

Many individuals contributed to the success of this event, from preparing signs to donating time and resources to joining us in the protest line. The Center for Student Leadership and Service and Coca-Cola donated beverages, and several students from the English Department and Nisonger Center lent their time and expertise.

Yellow sign in the lawn that reads: "You can't remove my autism without removing me."

Neurobigotry at Ohio State

On April 1 and 2, the Autism Speaks chapter at Ohio State displayed approximately 100 posters on the campus lawn, a spectacle they described as "autism awareness." Each sign read 1 in 110 on the front and sported slogans on the back, many of these slogans perpetuating fear and myths about autistic people.

An Autism Speaks sign that reads "Support Autism Research: Disturb the Sound of Silence"

Several members of ASAN-Central Ohio and Ohio State happened upon the signage while walking across campus and became visibly upset by them -- especially as they overheard other students and passersby concluding that autism is "scary" because, according to Autism Speaks, it's more prevalent than "diabetes, AIDS, and cancer combined" and causes an "80%" divorce rate among parents of autistic children.

A sign that reads "More children will be diagnosed this year with Autism than with diabetes, AIDS, and cancer combined."

A sign that reads: "80% of parents of children with autism get divorced." [emphasis in original]

A sign that reads "Autism knows no race, ethnicity, social boundary, family income, lifestyle, or education level"

A sign that reads "For every locked mind there's a key to find." Also pictured is a drawing of a key and Autism Speaks' iconic puzzle piece.

ASAN-Central Ohio/OSU strongly opposes the characterization of autistic people as having "locked minds," as needing others to "disturb their sound of silence" with eugenics. Autism Speaks continues to portray autistic people as disembodied numbers, numbers meant to instill alarm in the Columbus community.

Several Autism Speaks signs on the South Oval lawn

In response to such ableist rhetoric, ASAN-Central Ohio/OSU will be holding a counter-demonstration on Tuesday, April 20 from noon to 3pm on the South Oval (the lawn behind the new Ohio Union). We welcome anyone and everyone to join us as we protest neurobigotry in all of its forms. We will have signs on hand (though feel free to bring your own), including some alarming facts about Autism Speaks, its eugenic aims, its fear-spreading propaganda, and its unrepresentative leadership.

Additionally, ASAN-OSU began its own ad campaign on April 1, distributing flyers that dispel popular myths about autism and autistic people. Some examples of our flyers appear below.

Flyer that reads: "Myth: Autistic people don't have emotions. Fact: Non-autistic people often make us feel like crap."

Flyer that reads: "Myth: Autistic people need your pity. Fact: Every time you pity an autistic person, a kitten dies."

A flyer that reads: "Myth: Autistic people will never go to college. Fact: Who do you think made this sign?"

Newsweek Article on Ari Ne’eman

Newsweek has put out an article on Ari Ne’eman, “Erasing Autism.” The issue of research into the genetics of autism is certainly a tricky issue. One does not wish to hold back legitimate scientific research. On the other hand there are important questions to be asked particularly since we can count on this research being abused by the anti neuro-diversity people. I actually wrote a piece on this last year, back before Sarah Palin completely imploded on herself.

Speaking of the anti neuro-diversity people, they are already up in arms, which tells you how good an article it was. Hating Autism even accuses Newsweek of sodomizing autistic children. This strikes me as strange because the article is remarkably balanced. Upon reading the article I do not get the sense if the author of the article, Claudia Kalb, is for us or against us. She explains what Ari believes, gives a sense of what kind of person he is and offers some context as to the politics of autism. This is not a criticism of Ms. Kalb, on the contrary she is acting the part of a responsible journalist. One can only include that our anti neuro-diversity friends have a problem with anything that even acknowledges that articulate autistics, supporting neuro-diversity, even exist.

In regards to neuro-diversity, in case you have not seen it, please check out this twenty minute video, "Positively Autistic," done by the Canadian Broadcast Company last year on the topic. It features interviews with some of my favorite people in the autism world. First off it has Ari Ne’eman. Estee Klar of Joy of Autism is also interviewed. Ms. Klar is not on the spectrum, but is the mother of an autistic child, Adam. With neuro-diversity politics so often degenerating into autistics fighting against the parents of autistics it is good to know that people like Ms. Klar exist. Maybe we could start a “Mothers Who are Not Like Jenny McCarthy Award” or, to keep it short, a “Mom Award” to mothers and fathers, like Ms. Klar, who love and accept their autistic children instead of simply trying to “cure” them.

Article in The Lantern

The Ohio State student newspaper, The Lantern, interviewed ASAN members Melanie Yergeau and Benzion Chinn regarding ASAN's goals of changing social perceptions of autism and enabling self-advocacy. The article noted that the Ohio State ASAN chapter will be a source of information for students and faculty alike.

Here are the interviewer's questions and Melanie's answers.

Can you briefly describe your organization for me?

We've just formed an OSU chapter of the Autistic Self-Advocacy Network. ASAN is different from many other so-called autism charities in that it promotes neurodiversity, or neurological diversity. Basically, many autism charities focus their resources and funding on finding a cure for autism. They take a medicalized approach toward autism and disabilities, viewing autism in terms of impairment and cognitive deficit. ASAN doesn't fall in this category. Neurodiversity falls within a social model of disability, where societal barriers and discrimination are more disabling than any so-called disability.

In our campus ASAN group, we recognize that people on the autism spectrum are individuals, first and foremost, and we also believe that individuals on the spectrum, though neurologically diverse, are not diseased, defective, nor in need of cure. Rather, autistic individuals need (and deserve) societal acceptance, services, and support so that they can equitably and equally participate in society. We also find that far too many non-autistic individuals have taken to speaking for autistic individuals in negative, hurtful ways.

Here's a better description of ASAN (the national organization), taken from their web site at http://www.autisticadvocacy.org:

The Autistic Self-Advocacy Network (ASAN) is a non-profit organization run by and for autistic people. ASAN's supporters include autistic adults and youth, those with other distinct neurological types and neurotypical family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of autistic cultural activities and other opportunities for autistic people to engage with others on the spectrum.


Can you explain Autism for someone who doesn't know what it is?

A common saying in autism communities is, "If you've met one person with autism, you've met one person with autism." Autism is considered to be a developmental disorder with a variety of behavioral manifestations: it's often referred to as a spectrum disorder. Five disorders are classified as ASDs, or autism spectrum disorders: Asperger's, Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), classic autism, Rett's, and Childhood Disintegrative Disorder.

Often, ASDs are divided into categories of high- and low-functioning. Personally, I don't care for this categorization. As labels, they're fairly insulting, and they're also not empirical, really. When someone calls me high-functioning, it's hard to know whether I'm being insulted or complimented. There's still a tacit assumption that I'm not quite functioning, I think -- or, sometimes I feel as though my disability isn't really acknowledged merely because I am sometimes able to mask it. Additionally, "low-functioning" sounds even more insulting. I think it leads to questions of what society in general values as "functioning" but also what society values as human. "Functioning" sounds technological and sterile, and I also think it create a hierarchy among autistics.

I tend to like ASAN's descriptions of ASD because those descriptions aren't focused on deficit or disease: http://www.autisticadvocacy.org/modules/smartsection/category.php?categoryid=19%20%20Online

Some people debate whether ASDs are actually disabilities. I think this is complicated, and Benzion, or anyone else, for that matter, might give you a different answer. I view autism as a disability, personally, but one couched within that social model -- NOT a medical model. (In a way, it's kind of like reclaiming the word disability.) Some people might think I'm brain-damaged, for instance, because I'm autistic. My response would be as follows: if aspies and auties ruled the world, everyone else would be brain-damaged. I certainly need assistance in accomplishing certain tasks and so forth, but only because we live in a society that doesn't value universal design... and my neurological difference doesn't (or shouldn't) render my existence any less valid, any less human.

I should mention that ASAN is anti-cure. This stance tends to scare a lot of people: they tend to misinterpret it as anti-assistance, anti-accommodation, anti-services, anti-medicine, and so forth. It's not. ASAN views autism as a difference in neurological wiring, and, because of that difference (in comparison to those with typical neurology), autistic individuals need community support, equitable and affordable access to education and services, and so forth, definitely. However -- such services are in need of reform, especially those conceived under a model in which autism is viewed as a soul-stealer, etc. Any service that seeks to eradicate autism from an individual is not an OK service in my book. (To give an example of what I mean here: we could talk about stimming, which are stereotyped movements such as hand-flapping or finger-twisting. Autistic people might stim as a way to cope with sensory overload. Some forms of therapy try to stop stimming behaviors in autistic individuals, even though such actions are comforting and calming, because it looks "weird" or "abnormal." If the stimming behaviors border self-injury, then that's a different matter -- but stopping something just because it looks too autistic is ridiculous.)

Here's a recent PSA campaign ASAN released with the Dan Marino Foundation: http://nomyths.org/

How long has the organization existed at Ohio State? (If I understand correctly, it's brand new, right?) What was the process of creating the organization? How long have you been involved and why did you get involved?

We formed the group early winter quarter, though we'd been tossing around ideas as early as the fall. We ended up becoming affiliated with ASAN after I joined ASAN's Yahoo listserv. I corresponded with Meg Evans, who coordinates chapters for southern Ohio, and Ari Ne'eman, president of ASAN, via email, and they gave me some really helpful advice on a letter I was writing at the time to President Gee. That letter, along with a letter Ben was writing, served as the impetus for this group, I think. Basically, Autism Speaks held a walk for autism last fall... and, well, many autistic people have problems with Autism Speaks as an organization. For one, the name of their organization is a misnomer. There aren't any autistics in their organization who hold any decision-making power. At all. As an organization that claims to speak for autistics, there certainly aren't any autistics speaking.

What troubled us about this walk, though, were President Gee's remarks. I knew what to expect from Autism Speaks because I'm familiar with their fundraising tactics as an organization. But as I read and viewed and heard reports about the walk, I was dismayed. For instance, President Gee claimed, per a Lantern article, that autism should not exist. I fully recognize that President Gee, as with many people who want to help autistic individuals, didn't necessarily understand the political implications of that statement at the time, and he perhaps didn't realize the debates occurring in the autism world (and there are MANY debates). Nonetheless, because he is the president of our university and because he made these controversial statements about autism, I had some concerns.

Here's a link to the letter I wrote: http://asancentralohio.blogspot.com/2008/11/letter-to-president-e-gordon-gee.html
Kristina Chew wrote about it in her old blog, Autism Vox: http://www.autismvox.com/letter-to-osu-president-gordon-gee/

President Gee did respond, which was nice. A very vague letter, but I was quite glad for the response.

I should here mention that we don't see our organization as the anti-Autism Speaks. Rather, we're an alternative organization. We're especially concerned with self-advocacy and issues of representation, issues of speaking for versus speaking as or speaking with. In fact, per ASAN, the leadership roles in this group need to be occupied by autistic individuals. Hence Benzion and I as co-chairs.

We certainly welcome people across the spectrum to join, as well as people who are not autistic. We've also had a lot of support from Aspirations, which is a social-vocational support group for people on the spectrum. It's run through the Nisonger Center here at OSU. Also, our faculty advisor is Cynthia Selfe, an English professor who does a lot with digital media. We've had some help from the disability studies program in publicizing this as well.

How many members do you have?
I'm not sure yet! Hopefully we'll know on Thursday. We currently have four officers and a faculty adviser. We also have lots of people in the Columbus community who are involved and/or have expressed interest.

What activities does your organization do? How do you support the autistic community? What do you hope to accomplish at Ohio State?

I doubt the OSU community realizes there are students, faculty, and staff at OSU who are on the autism spectrum, or what that means, really. There is certainly need for a self-advocacy organization. Part of this initial meeting will involve brainstorming: We are very interested in changing the local autism climate in central Ohio, especially on campus. In forwarding a neurodiverse approach toward autism, we wish to respond persuasively, tactfully, and logically to campus-related movements that support medical paradigms. We hope to have those involved in the neurodiversity movement come speak at campus at some point. We really want to start a dialogue, complicate people's views of what autism is, of who autistics are.

I know it is a self support organization, do you have any autistic members? What experience do you personally have with autism?

I am an Asperger's autistic. On the web, we're called "aspies" or "auties." I also have family members on the spectrum, and have autistic friends in Columbus and beyond. My research is concerned with digital media composition and the affordances it might lend to autistic writers. I teach classes in the Department of English, and my focus areas are digital media studies and disability studies.

I know that one accusation that might come our way is that we, as so-called high-functioning autistics, presume to speak for all other autistics. This isn't the case. There are many people considered low- or middle-functioning who are involved with ASAN and other national and local groups allied with the neurodiversity movement. We're "speaking" with a large group of people. I can't presume to know that all autistics feel similarly. I only know that a whole lot of us do on certain key issues, and our perspective needs to be heard.

A few more clarifying points...

At a couple intervals, I said that ASDs are considered disorders. I want to emphasize the passive construction in that sentence (I'm a grammar nerd, yes), because I'm afraid it might not be clear otherwise. ASDs are considered disorders, or, phrased in active voice, other people consider ASDs disorders. I don't see autism as a disorder. But most non-autistic people do. My view is similar to Benzion's, as well as ASAN's description. Autism is really a question of who defines what normal is. We're different, so we're therefore disordered? In the words of the interwebz, WTF?

Finally, a point of semantics: I say autistic person rather than person with autism. ASAN and other neurodiversity organizations do this as well. Pro-cure autism organizations don't do this... they tend to say person with autism. Here's why. If you're for a cure, you want to believe that your child is a normal kid trapped inside autism -- as in, if you remove that pesky autism thing, lo and behold, normal little Johnny Junior will magically appear! It's wrapped up in a magic pill mentality. Additionally, some people prefer people with autism because they want to emphasize the personhood or humanity of an individual, which is admirable, and/or they don't want that person wholly defined by autism, which is less admirable, I think.

Neurodiversity groups use autistic person because they believe that autism is a matter of brain wiring. If you're born autistic, you'll die autistic. Changing someone's whole neurology is changing someone's whole person. (Jim Sinclair wrote a good, short piece on the problematics of person-first language.) Autism is central to an autistic person -- it isn't the afterthought that with suggests. As Jim Sinclair has noted, we don't categorize gender as "people with femaleness" or race as "people with whiteness" or sexual orientation as "people with bisexuality."