Given the number of comments and emails generated by last month’s article, revisiting the discussion, from a different place, was important. The fact that adults with autism were not included in the original article was a shortcoming of the piece, but it was also an interesting barometer of the situation in the U.S. As Landon Bryce, an autistic educator, pointed out to me on the phone, “to publish an article without talking to people with autism…what were you thinking? On the other hand, it’s the norm!”
In this piece, John Scott Holman, Ari Ne’Eman, Bridget Allen, Rachel Cohen-Rottenberg, John Elder Robison, and Kassiane Sibley share their thoughts on how autistic adults and children make their ways in the world of neurotypical people, in education, work, and life. There are a lot of viewpoints included here, but a common thread might be that, beyond the issue of human rights alone, a different attitude towards autism might have economic, educational, and societal consequences that would affect a great many people – autistic and neurotypical alike. Of course, how to get there is up for grabs.
Diagnosed just a few months ago, 25-year old John Scott Holman has made a big splash in the autistic community. Likening himself to “a bull in a china closet,” he says, “I’ve broken rules and precedents, been labeled a traitor, the autistic messiah, the autistic anti-Christ, a Nazi sympathizer, a phony, a genius, a spy, a sell-out, a has-been, a rising star… At the end of the day, I’m just an autistic kid who does a bit of writing.” Holman talked about going undiagnosed (and misdiagnosed) through his youth, and, now being deeply involved in the self-advocacy community, the divides he sees within it.
“For most of my life, people couldn’t understand the problem, because I’m intelligent and articulate enough that I looked ‘normal’ most of the time. No matter how hard I would try not to upset people, all I ever heard was ‘What’s wrong with you? You’re not trying hard enough.’ I was misdiagnosed with ADHD, generalized anxiety disorder, major depressive disorder, and bipolar disorder.” He writes in his blog for Autism Speaks, “My diagnosis has been my vindication and my inspiration.” Still, “it’s difficult to witness the recent explosion of autism awareness, to see parents and children being educated, guided, and provided with early intervention,” all the things he didn’t have. “The system failed me but it does not have to fail future generations.
“This is exactly the kind of system in which autistic people fall through the cracks. Autistics face many unique challenges, but may also have extraordinary abilities in very specific fields. Educators should encourage autistic students to be the best versions of themselves, not strive to fit the world’s standard of success. Society needs all kinds of minds, and the autistic mind is just as valuable as any other. We may struggle in many areas, but when we excel, we surpass all expectations. Employing an autistic person is not charitable – it is a damn good investment.
“There’s an ideological divide between the charity organization parents and the self-advocates. The primary problem with autism self-advocacy is the black and white thinking that often comes along with autism diagnosis.We tend to think in terms of enemies and allies. It’s not that simple. People with autism often have a hard time seeing shades of gray. It’s understandable though – you have people who have been mistreated and misrepresented their entire lives, and some have a big chip on their shoulder; while the message is good, people attack, and this ends up being less effective than other methods.”
“Where there is offense taken, the person offended must come forward and say ‘this has upset me, perhaps you do not realize why, please let me inform you.’ Instead so many retaliate with such intense animosity, and seem to forget the goal. Neurodiversity is not about celebrating the autism spectrum, it is about recognizing and accepting the undeniable diversity of the human spectrum.”
Making Space at the Table
Ari Ne’Eman has been around for a bit longer. He serves on the National Council on Disability and the Interagency Autism Coordinating Committee, and has done some pioneering work, as president and cofounder of the Autistic Self Advocacy Network, an organization comprised entirely of people with autism. The ASAN does everything from work in public policy to creating resources for autistic adults and their families, like a handbook for college students.
“When I was little, the local high school was a five minute walk. But I went to school an hour and a half away, to a special education school with terribly low expectations. They had the students doing dishes as a vocational preparation activity to save money on a kitchen staff. Many problems like this wouldn’t exist if we were better represented in policy decision-making. African-Americans, women, and other minority groups have a seat at the table in conversations about them – why not us?
“In almost all of the organizations advocating around autism, the representatives involved are mainly parents and researchers. However, we work to point out that autistic adults ourselves are too frequently absent. We’re fighting for the right to have a seat at the table in a conversation that’s about us. That’s the crux of the problem.
“Organizations like Autism Speaks have consistently excluded autistic people in their decision-making. As an attempt to try and respond to that criticism, Autism Speaks recently added one autistic person to a single advisory board. That’s laughable. Tokenism doesn’t put these issues to rest. ASAN aims to represent the diversity of the spectrum. For example, some of our members use traditional speech to communicate; some use other methods or can’t use traditional speech. Some have intellectual disabilities.
“Today people approach autism like some new thing that’s totally unprecedented that we can get rid of. It’s not new or novel, nor a public health epidemic. We are focusing too much on causation and cure. Of the $314,000,000 spent on autism research in the country, less than 1% goes to researching needs of autistic adults. We as a community have a problem with the focus being on the cure. The solutions offered are not in line with what we need and want.
Article source: http://www.forbes.com/sites/alicegwalton/2011/12/09/living-life-with-autism-ii-perspectives/