How we view people with autism matters a lot

If you’ve been reading this blog for a while, you know what some anti-vaccine people who are parents of children with autism have to say about their children. In their minds, they “lost” their children, or their children are an intolerable burden. They write and say these things in the context of vaccines, blaming vaccines for their children’s autism. They also write and say these things in an effort to blame someone for their situation, almost as if to say, “Look how bad I have it!” Many times, it’s all about them.

When they do write about their children, they usually write horror stories about temper tantrums at malls and stores, misbehavior at school, and things of that nature. The woman who wrote that her son was like the Connecticut shooter told us stories of almost being killed by her son. In short, willingly or not, some of these parents are placing their children in the worst light. And there are people who read that and go with it. There are people who look over at their own autistic child, or any autistic child, and wonder what will happen with them and their experience.

In the “vaccine wars,” even when, yet again, we find that there is no link between autism and vaccines (any vaccine), I sometimes come across stories that shake me to the core. This is one such story, pointed out to me by the fine folks at the Thinking Person’s Guide to Autism:

“The chilling facts of the boy’s savage beating by fists and feet are not in dispute.

He was left to die in the woods, his eyes, ears and nose bloody, teeth fractured, brain damaged. Months later, he cannot walk, cannot eat properly, cannot use the toilet and at 12, has to wear a diaper.

The equally chilling facts the assailant gave as reasons to hurt the boy are not in dispute.

“He’s a drain on society. His life is meaningless. It’s no big deal,” Greg Simard, 24, told police. “I did it for my country. . . . Um, maybe someone should come and shake my hand. . . a few pats on the back. . .””

Why was the boy’s life “meaningless” in the mind of Greg Simard?

“Simard pleaded guilty Friday to attempted murder Sept. 9, 2012, of the autistic boy under his care at the Child and Parent Resource Institute (CPRI) in London.”

That’s right. An autistic boy was, in the mind of this person, a “drain on society” with a “meaningless” life.

What is CPRI?

“Severely autistic, and non verbal, the boy was taken to CPRI in June 2012 for assessment and treatment. His parents hoped they’d learn how to better manage his autism, which expressed itself on good days in loving hugs and smiles, happily listening to music, and on bad days in angry outbursts and self harm. The boy came home every weekend, and went back on Sundays. The week he was beaten was to be his last at CPRI before being returned to the family full time. He was dropped off at 7 p.m. Sept. 9 at the cottage on the grounds on Sanatorium Rd. he shared with six other developmentally delayed children.”

While it seems that Simard has some mental issues of his own, it also looks like he despised the idea in his head of what the autistic child is:

““I’m his bitch and he’s my master,” he told police.”

Read that again for a second, then think about some of the parents, relatives, and others around children with autism and how they relate to those children, how they say those children are “lost,” “gone,” or even a “burden.”

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17 thoughts on “How we view people with autism matters a lot

  1. Pingback: This blog is not about autism | The Poxes Blog

  2. If you’re so concerned about how Autistic people are viewed, how about you start by listening to us and NOT calling us “people with autism?” It seems like you’re more concerned with how able people would like to categorize us than how we’d actually like to be called, treated, and spoken to.

    Your article’s alright, but Autistic people have written about all of these same topics without receiving praise. If you want to write about Autistic people, you need to be consistent in treating us as equals, not just attack some things harmful to us and then turn around and support narratives that disempower us. Thanks.

    • Really? You’re going to argue about semantics? That’s your beef?

      My dear child, I’ve done more for Autistics today between 8am and 10am than you could possibly imagine. I know it may be difficult to communicate and catch the nuances of what I write, but there is no need for you to be an asshat about it.

      Tell you what. I will write whatever I goddamn want on my own goddamn blog. If I’m wrong, tell me HOW I’m wrong, and we can have that discussion. Don’t just show up and say I’m wrong. Now, why in heaven’s name is “people with autism” not acceptable?

      • Well.

        The more words people put between “person” and “autism” the more likely it is they find the things mutually exclusive–thus giving plenty of justification for abusive treatment, from biomeddling to this to flat out murder.

        The community prefers Autistic. The community of Autistic people. Start with Jim Sinclair’s “why I hate person first language” and go from there.

        And it’s really arrogant to assume you do more for Autistics then commenters, some of whom might be Autistic activists. You just don’t know.

        • Yep. That’s me. Arrogant. And it’s “than,” sweetie. No one likes a pedantic asshat who can’t tell the difference between “then” and “than.”

          • I am not your sweetie.

            And I’ve been more relevant since before I could legally go into a bar than you’ll ever be.

            You are not an ally. You are just a self aggrandizing, patronizing ableist. Stop co opting my community to try to make yourself look like a Good Person.

        • You both have assumed the role of pedantic language policemen here. Haven’t you ever heard of “people first” language?

          http://en.wikipedia.org/wiki/People-first_language

          Is it odd that I post on many science blogs where autistic people/people with autism post, where I vary my language and have NEVER been called out for my language.

          Neither of you “get it”, do you? The subject of this thread is a young man who was brutally abused at the hands of caregiver. The caregiver, in his lucid moments, thinks of that child, and children like him, as not deserving of life. This creep is a child abuser and sexual predator.

          Perhaps in your narrow world you’ve protested at rallies…or maybe signed an online petition. Have you ever actually “put yourselves out there”? Have you ever testified at group home siting hearings…and left yourselves and your young child vulnerable to threats delivered in person or through the telephone? I have.

          Have you ever been inside those human warehouses where mentally ill and developmentally disabled people live, where staffing is a dangerous minimal levels and totally devoid of active treatment? You do realize, don’t you, that the lives you live now didn’t just “happen”…bestowed on you by a beneficent government? The parents who taught me my advocacy skills, fought to enact PL 94-142 in 1975. My generation fought to open the doors of institutions, to enable people with disabilities to live out their lives as full participants in our society (“Right at home, right in the neighborhood”).

          I’ve been involved in advocacy on behalf of children and adults who have developmental disabilities for 36 years…since my son was born with a rare genetic disorder, which caused profound and multiple physical and intellectual disabilities. He also was immune suppressed and had a bleeding disorder (pancytopenia), along with a partially controlled grand mal seizure disorder along with episodes of Todd’s paralysis. I also am the substitute guardian of a young man who just as disabled as my son.

          So. No. You don’t get to pull that “you haven’t walked in my shoes/you aren’t on the spectrum” card here. Nor do you get to accuse Reuben of being insensitive or “disempowering you”.

          I am aghast that neither one of you has any compassion or empathy for that young man or his parents.

      • Well you could look at the language that the Autistic community actually prefers, and why, starting with Jim Sinclair’s Why I Hate Person-First Language. There’s also the language policy of AASPIRE, a project of Oregon Health and Science University; the policy materials AUCD released for the 2011 and 2012 self-advocacy summits with regard to accessible and inclusive language for the Autistic community; the language policies of TASH; and of course the language policies of ASAN, the only autism advocacy organization run by Autistic people. If you still don’t get it, maybe the problem is with you, and not with everyone else.

        I’m more interested in looking at what you wrote, though. You call me a child, without knowing my age, but infantalizing me is a good way to dismiss my character, especially when you know I’m disabled. Then you claim it might be difficult for me to communicate–classy–and catch nuances, dismissing my ability to contribute to the conversation, and hence speak for myself. Into this void come people like yourself, and caretakers like the ones in the article above, equally terrifying prospects. I’m sure you won’t see it that way, but you’re all products of the same culture, you’re all carrying the same message, and you all contribute to the same result.

        You also call me an asshat, which, as far as I can tell is against commenting policy, but I guess it’s okay if YOU do it, or if it’s directed at the right kind of person. Finally, you mentioned doing more for Autistics between 8 AM and 10 AM than I can imagine. Well, even if that includes sleeping in, if these posts are any indication, the things you do “for” us are a sobering thought indeed.

        • NDNSN, I looked you up by your email address. You’re very, very young compared to me, hence me calling you a child. I don’t think you’re disabled. Do you think you’re disabled? You come here and tell me all about language and whatnot and you then label yourself with “disabled.” You’re not disabled. You were dealt a different neurological hand in life. That’s all. And I’ve read up on what you’ve done for yourself. Very impressive. There’s nothing disabled about you.

          Yes, I set the commenting policy, and it is a living document. I bend it to my will and I will write what I want. It’s my blog, man. Get over it.

          You don’t have to comment here if you don’t like what I write. Seriously, no need to be so angry. Chill. Out.

    • What are you blathering on about? Have you read the articles that Reuben and I provided? Have you no empathy for the young man who was brutally attacked and left for dead, by a caregiver?

      Do try to develop some people skills and stop claiming that Reuben is in any way “disempowering” you. I hate pedants…whose comments are devoid of any content.

      • What kind of display are you looking for? That every comment requires some kind of typed emotional reaction to TPGA’s content in order to criticize Reuben’s–and your–infantalizing and ableist behavior?

        For the record, ASAN has held vigils for the past 2 years in memory of disabled people killed by caregivers. I have helped with organizing these vigils locally. That takes a lot more effort than posting about it and using someone’s death as a shield for bad behavior. So you can continue with the personal attacks based on stereotypical views of my disability if you like (ironic considering the subject matter), but please, let’s not pretend I’m the one here lacking personal graces.

        • Look, NDNSN, you came here with a bad attitude, and now you’re going after my other readers, a big no-no in my book. I’m not forcing you to read. Lilady is not forcing you to read. No one is forcing you to read. Chill out with the attitude or be banned, okay?

        • NDNSN: Read my comments above you. I earned my stripes as an advocate for my child and for all children and adults with developmental disabilities. I’ve been in the trenches going toe-to-toe with bureaucrats, politicians and others who want to keep the status quo.

          “Ableist” “disempowering”? How quaint. How about staying on topic and coming out of your extremely narrow spot on the “spectrum”. Big deal…you “organized” a rally in memory of people who were killed by caregivers. If you chose to leave, clutching your pearls over an imaginative slight…then do so.

  3. How sad, to think that the young man was placed in that facility for behavioral evaluation and treatment to ameliorate some of his acting out behaviors, then was brutally abused by a member of the staff at that center.

    I have another article from that same media outlet about that center:

    http://www.lfpress.com/2012/09/12/facilitys-tight-security-raises-questions

    – The children slept in locked bedrooms in cottages which were also locked?

    – The children did NOT go off-site for schooling?

    – ONE staff member assigned to each locked unit during evening hours? (Dangerously understaffed IMO).

    This perverse child batterer had a history of exposing himself in a public place BEFORE he abused the child, yet *somehow* fell through the cracks to return to his job…free to victimize this innocent child.

    How much time elapsed from the time the child and the “carer” disappeared until police were notified?

    How many of those parents who b!tch and moan about their plight in life on that notorious anti-vaccine blog, have ever lifted a finger to advocate for increased resources to care for their children, for development of in-home and out-of-home respite programs, for the siting of group homes within neighborhoods…not on the campus of a developmental center, so that their children will have the opportunity to live out their lives with dignity, in a safe home-like environment?

    • Yeah, I’ve tried to ask them what else they do for their children beyond libel and innuendo. I always get the same idiotic response, that I shouldn’t be judging if I don’t have a child with the same condition. It’s a cop-out. And people who know they’re in the wrong use that cop-out.
      People who are reasonable about these things will see that they’re wasting their time being so full of vitriol and look to positive ways to solve the problem.

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