Thursday, July 23, 2009

I repeat myself

Had you said your life was difficult, frustrating, misunderstood, no problem. You said a “nightmare,” though, because of the autistic child in your life. If you had said that you’ve had to work very hard to get any doctor to treat your child’s medical problems, that they wrote off everything from seizures to acne as “part of the package” of autism, I would have nodded my head, understanding. But you said it’s “worse than cancer,” bringing into the argument the specter of death, and at the same time showing your disregard, your disdain, for the many self-advocates (and others) who have explained so often the multiple levels on which this offends. You said that your child’s life was a “tragedy” when you could have said “challenge.”

When I protested the use of these terms, you showed me your “rights.” Don’t you have the right to your opinion? Why don’t I just mind my own business? Why don’t I recognize that I am the one who oppresses you, trying to control your language and thoughts? You showed me your "honesty," how the rawness of your words might heal you and others who had not yet stated their own analogies— autism = [worst thing you can think of]—or submitted their own children's most personal struggles for public scrutiny.

Do you think that eventually I will get tired of making the same explanations, reminding you of history, privilege, and consequences? You are right. I am tired of it now, the same story over and over. But I remember Katie McCarron. Her mother saw her daughter’s autism as a tragic, too. I remember the times I nearly chose death over a world where I was sure my voice would never be heard and understood. So I say it again. I say it again. You want to know why I repeat myself? I’ve heard echolalia comes with the package. But there may be something beyond that...

I’ve been told that if I would just ask politely for what I need, people would find it easier to listen. Let me try that. Let me try that again. If you could possibly find a way to express your feelings, to ask for what you need, for what you want for your child, without doing things that make the world a harsher, less welcoming place for autistic people (including your child), that is something that would really be appreciated. And if what I’ve written doesn’t apply to you, I am sorry you had to hear this again. Thank you for listening.


  1. Thank you..I hope that when my kids are old enough to be in the world-notice popular media..etc. I hope that what you say here doesn't need to be repeated again by them..

  2. We're all tired of it, but it has to be done anyway, until people understand that this is a cultural issue that goes far beyond individual word choices.

  3. I think people who don't listen believe it's dangerous to do so. If the truth is too radically different than how they are looking at things, they will see how radically they need to change. That's scary.

    As always, thanks for speaking up Bev. :)

  4. Sadly I think it'll have to be said over and over again.
    Thanks for this. And wishing you didn't have to.

  5. You're a lot more polite than I would be.


  6. I can only hope that one day the sorts of parents you're aiming this at will realise how deeply they're cutting their own children.

    I can however understand how a depressed person could work themselves into such a state where they may say things like this.

    Nobody could actually mean it though, could they?

  7. Thank you Bev, you put it better than I could (I started to go off on tangents : )

    I commented @43 and strangely caught flack from an autist. I think maybe the numbering was messed up on NYT (either that or I am really clueless).

    Not all parents of autistic kiddos are like this. We (I) value input from autistic adults. After all, our children will develop and grow.

    And seriously? This mothers' child is five years old and her life is a nightmare/over/worse than cancer? Snort....wait till they are teens - NT or whatever - that is a real grey hair inducing challenge!


  8. Bev,

    Thank you for a very polite and at the same time powerful post.


  9. I always want to respond to this stuff but I don't know how, can't express what I realy want to say and I feel like I usually end up making things worse.

    So I'm glad that people like you are responding too, like this.

    (Also my captcha-word-thing for verification is.... 'porksms' O_o? Pork sms?)

  10. Nice post. My son has Asperger's. It is absolutely a challenge, and I work hard to keep his spirits up. I tell him that having Asperger's is a gift. I would rather have Asperger's than not have it. Autism is tough, but those kids (and adults) are pretty smart, too. I remember watching Amanda's video. She's very smart.

  11. "And if what I’ve written doesn’t apply to you, I am sorry you had to hear this again. Thank you for listening."

    It is worth hearing a million times if it means you change one mind.

  12. Bev, thanks for saying it again and again. You're wonderful!

  13. Just sent your link to a student doing a thesis at university on "positive attitudes to autism"

    I hope she gets in touch with you Bev. xx

  14. Bev and friends, wanted to make sure you saw Shannon Rosa's article at Blogher on attitude & parenting & autism

    You have to read the whole thing -- it is beautifully written -- but here are the last two paragraphs.

    When I read her post, I wished more than anything that mom could come join me and my friends at our weekly Bad Moms' Coffee, so she could complain as much as she wants to among people who get her kind of extreme parenting challenges -- but who then choose to parent despite, not powered by, disappointment and emotional suckerpunches. Let's hope she eventually escapes from her camp of negativity enablers, and finds a parent community who will truly help her and her daughter -- one with a support web like mine, formed by partners and other souls who are tired and grumpy and sarcastic, but also held together by pure white hot child-centric advocacy. Then, perhaps, she'll let herself love her daughter wholly even as she fights for her, and as difficult as her journey has been.

    While all parents should reserve the right to vent lest our heads and eyeballs explode (and then who would clean that up?), when it comes to complaining, I hope we can try to be dabblers, not devotees. And that, if things really do get too hard to bear, we can rely on communities secured by hard-won optimism to envelop us and hold us aloft, until we have the strength to strike out on our own again.

  15. I don't understand. Why is it not allowed to be a nightmare and worse than cancer for her? It's her life; I presume she's the expert on it.

    I was married for some years to a severely mentally ill man. Several years on, I'm still not entirely recovered, physically or emotionally, from the experience. It was absolutely horrible and deeply exhausting. I am, as you might imagine, perennially on the wrong side of NAMI, which is all about encouraging the sane to be the happy helpers of the mentally ill.

    I found, though, that there are many other women out there who'd been in the same position, and all have been deeply sympathetic and understanding. Thank God for them. All urged me to divorce him.

    The man eventually left after deciding that I had several personality disorders, was making him sick, and had given him PTSD. He remains on disability and is in an MSW program; he intends to counsel Iraq vets with PTSD, because he feels he can identify with them.

    Yes, I know that Asperger's is not a mental illness. Far from it. But any "way of being" that's far from the norm, or which does not play by the rules of the norm, is going to create major stresses for the normal. Maybe even devastating stresses, particularly when the normal person involved finds there's no escape. So I don't understand why this woman isn't allowed to feel what she does, and to say so. You certainly claim that right for yourself, as you ought.

  16. "Or submitted their own children's most personal struggles for public scrutiny."

    I ran into one of these parents on another blog, it would appear the owner of the blog deleted their highly offensive post. The parent was complaining about having to take care of her son's bathroom issues.

    Now, if she had a NT son, would she believe it'd be appropriate to go on a public forum and whine about how he's an older child and she still needs to assist him in the washroom? No, people would say that's humiliating. Somehow she feels, because of the type of environment created by the type of people who follow Autism Speaks, that it's okay to talk about her child as if he's less than human. Like, a zoo keeper would complain about cleaning up elephant poo in the cages.

    So I raged at her, apparently said rage post also deleted. I really think another poster there put it perfectly. Autism Speaks supports parents with limited love, and limitless self-pity. These parents are complaining cause they didn't get a "perfect" child or how their life is burdened by having a child on the spectrum.

    You know, I really think the parents who found the I am Autism video "inspirational", apparently there are some sick people out there who did. Feel that their message of "Poor me, nobody understands how I..uh I mean my child suffers!" They're not outraged that the videos of their children, were put into a presentation talking about the nightmare of their children's exisitence, they're happy. It means more pity for them.

    If these parents were the parents of NT kids, this would be seen as emotionally abusive behavior. As long as Autism Speaks keeps convincing people that people on the Autism Spectrum are burdens, or need to be "cured", they will create a place for martyr mommies and daddies to find their self-pity. They could care less about the children, even if they do. They just care about money.

    The more Autism Speaks will convince people, that it's appropriate for parents of children on the Autism spectrum to behave, in what would be seen as emotionally abusive behavior to an NT child, the worst things will get for children on the Autism Spectrum.

    Sorry that this got long, and perhaps rambly. I really think it's disgusting, that these abusive parents not only get support, but are encouraged in thinking their children are less than human because they were born with a difference. Furthermore, I wonder why the heck these parents became parents if they wanted the world to revolve around them. So they could bring their kid with them to show off to their friends, like a new handbag.

    These people are beyond shallow.

  17. Anonymous, what about the "major stresses" people who are "normal" cause those of us who are simply different.

    I'm sorry you had a bad relationship with a mentally ill man, but you are putting us in the same category as him, by suggesting we are somehow causing major stress for normal people.

    Furthermore, you don't have to take care of someone who is mentally ill if it's not in your ability. I feel for parents who have children who have more challenges due to their Autism. Does this mean, I'd be able to look after them for their parent or be their friend? In most cases no. Would it be more stressful for them having to cope with me having a meltdown because of behaviors they may not be able to control, yes.

    You may just be helping as much as if you supported someone with a mental illness, by admitting that it's not within your capability to be a good support for them. It doesn't mean you're less of a person, and it shows consideration and respect for them, that you would think about how you would affect them.

    I have a friend who is Autistic, and she's really sweet. I try to spend time with her as often as I can, however I find it difficult to understand her most of the time and this causes me a sense of social anxiety. However, I figure if we go out and do something for the day, it's okay and wouldn't be too overwhelming for me, and the main point is it would make her happy.

    So, what I'm saying is it's better to not be in a relationship with someone on the Autism spectrum or mentally ill, if it will cause both of you grief. Being around someone who you stress out, is stressful.

    That's just the way life is, you can't be compatible with everyone. Suggesting we're a burden on normal people, simply because we're different is ridiculous. Furthermore your comment about "Playing by the rules of the norm?" What are these rules specifically? Cause there are many NTs, who do things that would probably be considered not "Playing by the rules of the norm"

    If difference in human beings disturbs you so much, well outside of living on the moon, I don't have much advice for you. Being able to cope with all kinds of people, is a part of being an adult.

  18. Thank you. Some days it seems like people don't get it that my son can not only hear & understand what is being said, but can remember it & ponder it later. (And yes, he's very "high-functioning," but that doesn't matter.) All children can and they do.


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