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Thread: For those with kids on the autism spectrum

  1. #1
    nolite te bastardes carborundorum stellarfeller's Avatar
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    Jan 2007
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    For those with kids on the autism spectrum

    I saw this blog post yesterday and thought you folks would like to read it.

    People, particularly abled people, try to separate disabled people from our disabilities a lot. For example, if you tell me (like many abled people have) “You’re not your autism!, ”“You’re not autistic, you’re a person!” or “Don’t think of yourself as disabled” you’re separating me from my disabilities. The same is true of “I don’t really think of you as disabled,” “Don’t let your disabilities become your identity,” “You’re a person with autism, not an autistic person,” and “Your disabilities don’t define you!”

    I can’t speak for all disabled people, but I can tell you how this affects me, and I can tell you that I’m not alone. (Look at some of the replies to the tweets I linked to, for a start).

    When you say those things, you probably mean well. I know that. You probably think you’re being kind. Maybe you think you’re being encouraging. To put it bluntly, you’re not.

    As Shufflejoy pointed out, disabilities that affect us every day aren’t things we can just abandon or separate from ourselves. I’m not completely defined by my autism, ADHD, and physical disabilities, but all of those things affect my experiences every day of my life. They’re part of what defines me as a person. They’re part of my identity.
    Mornings are for coffee and contemplation
    Chief Hopper, Stranger Things

  2. #2
    Premier Sponsor Peanut's Avatar
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    I truly believe when people say things like that it is a misguided attempt to avoid labeling, and not necessarily a method of separating one from a diagnosis as an intrinsic or defining part of the person afflicted. It isn't about separatism, more about not defining the whole of a person by one--diagnosed--facet of the person.

    You wouldn't introduce me to a friend as "Peanut, I would like you to meet my autistic friend, Jeb." any more than you would introduce me to a friend as "I would like you to meet my Hispanic friend, Jeb."

  3. #3
    Non-praying member Mamapalooza's Avatar
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    I use the term "autistic" to describe my daughter, and I know it is a sticking point for some people. Yet here is someone with autism saying that avoiding "autistic" does them no favors. So I don't's such an individual thing.

    I know that not a single day goes by that I'm not aware that my daughter has autism. I think about it a lot and it is a daily conversation in our house to discuss her progress and development. We see changes on a weekly basis, and the topic is very much a part of our daily life. Maybe this is because she is effectively an only child so we have the ability to focus a lot of of our attention on her, but I think too, my husband and I are always cognizant of the fact that the sole reason we have lived in this city for the last 5 years (and have the life we have) is due entirely to having moved here to access quality services for her. She is very much the driving force behind....well, everything. LOL

    Outside in the world I am always mindful that she has autism. When a stranger speaks to her and doesn't get a typically verbal 8 year old's reply, I am comfortable filling the silence with a polite "she has autism" before answering their question that was directed at her. Yet I don't offer that up to explain away every verbal oddity she might display within the earshot of every stranger in the grocery store. Sometimes they'll just have to wonder why she sounds like a repetitive 4 year old, and I'm okay with that. I'm busy just enjoying the fact that SHE is enjoying the experience (which was not always the case). I must lead a boring life, because grocery shopping with my kid is actually FUN now. The other day, a cashier handed her a bag and asked if she wanted to pack some groceries. She surprised and delighted the hell out of me by taking the bag and happily putting in the groceries like it was no big deal. It's a far cry from when she would respond to something like that by dropping her head, covering her ears and making some kind of nonsensical noise. She's a little girl learning new things just like all kids her age. And yes, I am always aware that it's in the context of autism, but I guess it's when living in the moment that she and her autism are most easily separated, to use that word.
    "Wherever in the world much poverty is found, much religion is found also"

  4. #4
    It's BEN and Jerry, not GWEN and Jerry! Catamount's Avatar
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    I like that, Stellar. I think it's really hard to imagine teasing apart the "real person" from the autism when that impacts everything about how someone experiences and thinks about the world. I know that some people imagine a "real person" trapped by their autism, but for my kids that doesn't feel like it matches at all. I do try to distinguish their thinking/being from their behavior at times, but I hope they understand that I'm trying to say "please stop DOING that" rather than "please stop BEING that."

    I got this link to an essay along similar lines earlier this week:

    I am not a “person with autism.” I am an autistic person. Whydoes this distinction matter to me?
    1) Saying “person with autism” suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still be the same person. I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain
    2) Saying “person with autism” suggests that even if autism is part of the person, it isn’t a very important part. Characteristics that are recognized as central to a person’s identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about “male” and “female” people, and even about “men” and “women” and “boys” and “girls,” not about “people with maleness” and “people with femaleness.” We describe people’s cultural and religious identifications in terms such as “Russian” or “Catholic,” not as “person with Russianity” or “person with Catholicism.” We describe important aspects of people’s social roles in terms such as “parent” or “worker,” not as “person with offspring” or “person who has a job.” We describe important aspects of people’s personalities in terms such as “generous” or “outgoing,” not person first language as “person with generosity” or “person with extroversion.”Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.
    3) Saying “person with autism” suggests that autism is something bad–so bad that is isn’t even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not “people with left-handedness,” and about athletic or musical people, not about “people with athleticism” or “people with musicality.” We might call someone a “blue-eyed person” or a “person with blue eyes,” and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn’t make me any less a person, then that’s their problem, not mine. Let them find a way to remind themselves that I’m a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.
    Copyright (c) 1999 Jim Sinclair
    "Correlation doesn't imply causation, but it does waggle its eyebrows suggestively and gesture furtively while mouthing 'look over there.'"

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