Rethinking Autism

Autism is not a tragedy. Ignorance is the tragedy.

The phrase “autism epidemic” is thrown around so much it’s taken for granted. Autism is widely seen as a terrible burden, a fate often said to “tear families apart.” Autistic children and even adults are described in terms that make them out to be liabilities, rather than human beings worthy of love, respect, and even personhood. Stories like these, earnest as they might be, reduce autistic people to forces of nature. Organizations like Autism Speaks focus on easing the lives of caregivers, rather than advocating for autistic people themselves (or, indeed, even allowing autistic people to advocate for themselves).

It’s past time to rethink all this.

First things first: vaccines don’t cause autism. They don’t even contribute to it, in any way. If you believe otherwise, I would politely suggest that you are reading the wrong blog. It’s a point that is no longer up for debate–despite numerous studies, including multiple large, long-term studies, no link whatsoever has been found between autism and vaccination. None. Even the doctor who originally put forth the idea (for his own financial gain, I might add) eventually recanted.

I can understand why some still cling to this. It is natural to want an explanation–to have a reason why. “Why me? Why did this happen to my child?” It’s comforting to be able to point to a cause, to know exactly why something occurred, and to know it wasn’t your fault.

But the motives behind this are completely misguided, too. Autism doesn’t “happen” to people. It’s not a boogeyman lurking in the shadows that seizes perfectly normal children and warps them into uncontrollable monsters. It’s not something that requires an apology. It’s not something for anyone to feel guilty about. It is an aspect of the individual that is as inherent to them as the rest of their personality. While it would be useful, from a scientific standpoint, to know the exact cause(s) of autism, the popular focus on finding such causes is more about seeking a “cure,” itself stemming from the false notion that autism is a “disease” that can be “cured.” And cures are sought, not to help autistic people themselves, but to ease caregivers’ lives.

Do caregivers deserve relief? Sure. But not at the expense of autistic people’s personhood, dignity, and even existence.

In the opening paragraph of this post, I mentioned how advocacy groups like Autism Speaks don’t actually give autistic people a platform to advocate for themselves. So, I am going to use mine to boost the voices of autistic people, who are perfectly capable of communicating about their own experiences.

Lydia Brown:

Autism Speaks routinely relies on ableist rhetoric and fundraising tactics that promote fear-mongering and pity about autistic people rather than genuine understanding or acceptance. Comparisons of autism to deadly diseases, natural disasters, and car accidents do little to encourage support of Autistic people and everything to encourage fear and tragedy models of disability in direct contravention to the principles of anti-ableism, disability justice work, as well as the disability civil rights movement. In Autism Speaks’ Strategic Plan for Science 2013-2017, the authors use language that inaccurately refers to autism as a “disease,” discusses autism’s “cost” and “burden to society,” and speaks of autism as an “urgent public health crisis.” This is language intentionally chosen to evoke fear.

Yet their rhetoric is not merely limited to fear-mongering, but also indisputably crosses into the territory of the unconscionable. Former Autism Speaks board member Harry Slatkin, whose wife, Laura, continues to serve on the Board of Directors, stated in an interview with Town and Country while still a board member that sometimes he hoped their autistic son David would drown in the backyard pond rather than “suffer like this all his life.” Evidencing a pattern of similarly violent rhetoric, Autism Speaks is also responsible for the 2006 PSA “Autism Every Day” in which their then Vice President states on camera that she considered putting her autistic daughter in the car and driving off a bridge, and that the only reason she refrained from doing so was because her other, non-autistic daughter would have been waiting for her at home—her autistic daughter was in the room as she made these statements. Furthermore, the producer of this PSA explicitly admitted that the film was intentionally staged to portray negative images of autistic people and their families.

Ed Ised:

The politicians claiming to support autistics too often support oppressive traditions. They are quick to show how the science doesn’t support harmful treatments and how autism doesn’t necessarily create what passes for intellectual limitations. However,the goal of overcoming all that has been conveniently labeled substandard is unrealistic. In this way, the average autistic, who has fewer options, sacrifices for the sake the politics-as-usual arena where the stagnation of progress is protected.

I commented on an article recently which I thought was very helpful.It generally suggested better access for influential discussions. The responses indicated that some saw what was being proposed asdumbing-downor implying that some people weren’t capable of meeting the standard. This, from their perspective, would encourage pity and a condescending approach toward them.

Either the number of people not participating indicates that the standard is exclusive, or the people who don’t meet it will be blamed. Pity and condescension are threats, but they aren’t the only threats. An obstacle that is equal in successfully preventing participation is the way some will claim they are providing support and encouraging others to rise to their potential but are not doing that at all. Instead, they are protecting the system and the position they have attained within it.

Mark A. Foster:

The bullying I received, as a child and young teen (and sometimes as an adult), was deeply painful and, I suggest, would even constitute a category of oppression. It is, in my view, largely irrelevant that the perpetrators were ignorant concerning my high-functioning autism. I myself had a clouded and distorted view of the issues facing me. The fact is that I and many other aspies, whether diagnosed or self-defined, have, as a consequence of our neurodiversities, been subjected to traumatic and sustained abuse. This oppression of a neurological minority is revealed in the stories we tell each other. It reflects an ideology I term neurotypicalism and, like racism and sexism, cannot be explained away as mere individual victimization.

Anonymous:

As is repeated on the parent blogs, Autistics live their lives on a razors edge.

One step, one step, one outburst, one badly made face, one misplaced word, and the overstacked and overfunded medical industries (the bragging rights of our overlords technorationalist society) pull us within their locked doors.

It may be repeated by the non-disabled but perhaps too impoverished for diagnosis onlooker that they too stand these risks, but their risk is prison and so our lot is better.

But group homes, asylums and prisons bear many similarities. The overpresence of care in the backyards of the corporate elite militates their own children.

Parents know, and some burst with the knowledge that their disabled children are steps away from a banishment that they have never known.

If one is curious about the violence done by parents of Autistic children to Autistic infants, one must imagine a situation in which the richest of the rich always stand a chance of bearing a child that has no hope but prison.

Amanda Baggs, paraphrasing the advice she is given by self-advocacy advisors:

I’d let you have your voice if it were meek and compliant. But since your voice is different, since you’ve had a taste of living as a free human being with rights, I am going to have to do something about this. But I won’t say so. And if you say so, nobody will believe you. After all, you’re just a client, and I can make up an excuse for your input not to count.

But no, you’re not a client. We’re all individuals. I am just as individual as the rest of you. You are each individual from each other. In this way, I can teach you to ignore oppression by acting as if we are on equal ground to begin with.

When I want you to be smart, I’ll treat you like you’re smart, because it’s convenient to me. When I want you to be dumb, I’ll treat you like you’re dumb, because it’s convenient to me. None of it will have to do with anything about how you process information or think about things. It’s all about me and my ability to dominate you. But you’re not allowed to say so, that would be wrong.

I am going to do this all in the name of protecting everyone else from what you have to say, but really you threaten my position of authority. You not only understand what’s going on, but you say something about it. The others understand how patronizing and controlling I am, and some even take steps against it, but I am going to shove that to the back of my mind and put my focus on you. That way I won’t have to think about the fact that in all my lectures about the proper modes of self-advocacy, I have never given anyone the tools to stand up to me. If people don’t stand up to me, it’s obviously because I’ve never done anything wrong.

Amy Sequenzia, in an open letter to Suzanne Wright and Autism Speaks:

I have seen you use your influence, money and celebrity connections to spread a message of fear and terror about autism. You refuse to acknowledge that there is a whole new group of Autistics that will not be silent anymore, while you try to pin on us the false pictures about our lives. You are oblivious to the still young Autistics finding their voices, their identity and their pride. You insist that our lives are miserable because you refuse to see that people like you are part of the reason why things are so complicated and difficult for us. You lump autism and some co-occurring conditions together to finance research that does not address the co-occurring conditions, but that seek to eliminate us. You are also oblivious to the growing number of allies siding with us, with our rights, because they see all lives as valuable and deserving of respect.

Some quotes from a New York Times piece on autism self-advocacy:

“We don’t have a disease,” said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills. “So we can’t be ‘cured.’ This is just the way we are.”

“People don’t suffer from Asperger’s,” Justin said. “They suffer because they’re depressed from being left out and beat up all the time.”

“We need acceptance about who we are and the way we are,” said Joe Mele, 36, who staged a protest at Jones Beach, on Long Island, while 10,000 people marched to raise money for autism research recently. “That means you have to get out of the cure mind-set.”

“What they’re saying is their goal is to create a world that has no people like us in it,” said Jim Sinclair, who did not speak until he was 12 and whose 1993 essay “Don’t Mourn for Us” serves as a touchstone for a fledgling movement.

“Behaviors are so often attempts to communicate,” said Jane Meyerding, an autistic woman who has a clerical job at the University of Washington and is a frequent contributor to the Autistic Advocacy e-mail discussion list. “When you snuff out the behaviors you snuff out the attempts to communicate.”

Sarah Kurchak:

When I was finally diagnosed with autism spectrum disorder six years ago, I wouldn’t shut up about it. In part, this was because I, like many autistics, tend to perseverate about the things that intensely fascinate me and, at that moment, there was nothing more fascinating to me than discovering that there was an explanation for all of my sensory sensitivities, social issues, repetitive behaviors and obsessive interests. I also believed in the importance of autism awareness.

But once I started participating in awareness campaigns I found the same overly simplistic and fear-mongering message over and over again: autism is a “crisis”.According to the highly influential charity Autism Speaks (which doesn’t have a single autistic person on its board), autistic people are “missing” – we leave our family members “depleted. Mentally. Physically. And especially emotionally.” Defining our existences solely as a tragedy for non-autistic people is hurtful on a personal level. No one deserves to be told that they are nothing but a burden to the people who love them and everyone has the right to feel like their lives have value.

There’s a consistent theme here: treat autistic people like people. They should be leading the discussion, not excluded from it. They should be listened to, not patronized. Instead of making decisions on their behalf, ask what they want and need. Not all autistic people may be able to self-advocate, but too many aren’t given the chance in the first place.

The people I have quoted here are, of course, just a sample that I selected. They don’t represent all autistic people–no one person or small group could. If you want to know more, do what I do: seek out more autistic voices. Find out what they have to say. Talk to autistic people in your life–chances are, you know at least one, possibly more! More importantly, make sure you’re listening. They’re talking, whether you hear them or not.

Views All Time
Views All Time
608
Views Today
Views Today
2

CC BY-NC-SA 4.0 This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

About the Author

James
James runs this blog and likes to write about society, culture, politics, science, technology, social justice, and pretty much anything else. Rumor has it people read his posts sometimes.

1 Comment on "Rethinking Autism"

  1. Donald McCarthy | 11/06/2015 at 11:36 PM | Reply

    An excellent article. Hearing the opinions of those with autism is great and it needs to be more prominent. One wonders how they’re treated by mental health professionals.

    The spike in the diagnosing of autism has led to a lot of poisonous thinking because many don’t understand why it’s happening. Many believe it’s bullshit, not paying attention to the fact that we are simply getting much, much better at diagnosing. This seems to be where the vaccine fears come from, but, in general, it’s still treated as if it’s an epidemic as opposed to something we should learn to understand.

Comment on this!

Rethinking Autism

by James time to read: 9 min
1
%d bloggers like this: