My whole family is not autistic.

Standard

I am saying this from the point of view of someone whose entire family is neurologically atypical in some (often significant) way, and the majority of my immediate family is autistic: My whole family is not autistic.

I’d begun trying to write about this before Wade Rankin of Injecting Sense wrote an entry on Autism Every Day saying:

It’s not just the child who gets autism; it’s the whole family. And the family is autistic all day, every day.

No.

I live over 3,000 miles from my parents and brothers. One of my parents is autistic, and one of my brothers is autistic. My other brother, and my mother, are not autistic, any part of the day, even if one or both are BAPpy.

No matter how involved in my life they are, they are not living my life. They are not experiencing what it is like to be autistic, they are merely experiencing, some of the time, what it is like to be in the proximity of autistic people, to love autistic people, to care for autistic people. There is a difference here.

This difference is often glossed over. People other than autistic people are said to write “first-hand accounts of autism”. Would a man dare write a “first-hand account of womanhood” because he married or raised one? Parents who are not autistic often call themselves “autistic parents,” thereby muddying the waters for those who are actually both autistic and parents. Would a man call himself a “female husband” or a “female father” just because he’d married or fathered a female?

This distinction is nonetheless important. It reflects whose voices get heard. If the non-autistic family members are viewed as having equivalent levels of experience with autism as autistic people do, then it becomes a little less important to hear from actual autistic people. After all, we can get “first-hand” accounts of autism from non-autistic people, and non-autistic people can call themselves autistic based on mere proximity with us. What would be the need for genuine autistic perspectives?

Not that non-autistic people’s perspectives are not important. But here is something Cal Montgomery says about these sorts of perspectives:

Publishers continually crank out books about the tragedy of disability, of which most may be classified as memoir by proxy: Nondisabled writers write not as representatives of their own experience (or observers of others’) but from the imagined experience of someone who has not licensed the portrayal. The best of these grapple with the limits of what the proxy can know, and struggle with the complicated responsibilities that arise when the choices seem to be either “speaking-for” or allowing the experience to go totally unrepresented. The worst, by writers who prefer spectacle to truth, invite nondisabled gawkers to a sideshow starring an alien mind in an alien life.

— Cal Montgomery, in Whose Movement Is It Anyway?

If my family had abandoned me, I would still be autistic, and some of them would not.

If my family dies, I will still be autistic, and some of them will never have been.

I believe that using “with autism” has become more than a cute little word-game in these instances. It has allowed people, particularly very word-minded people, to view “autism” as something that is not necessarily inseparable from an “autistic person.” It’s only one step from there to seeing “autism” as a thing that exists within a family, like an unwanted uncle that lives there and won’t move out, and that is no longer attached only to autistic family members, but instead to all family members. This separation of autism from autistic people is inaccurate. There is no such thing as autism. There are only autistic people. Autism is an abstractified version of a quality of autistic people, not a thing that can be possessed by, or that can possess, a person or a family. Putting autism separately from a person allows the word-bound to view it differently than it really is.

I was talking to Laura Tisoncik, a friend of mine who’s autistic, about staff. She was commenting about how they get respite hours in which other staff take over for them, to prevent them burning out. She said, “When do we get respite from burning out on them?”

The role of the caregiver (often but not always a non-autistic person — I’ll be temporarily in that role tonight, for another autistic person, who has been in that role for me at other times) tends to be, popularly, valued and celebrated as selfless and self-sacrificing. The role of the caregivee (when dealing with autism, usually an autistic person) tends to be, popularly, viewed as burdensome, an imposition on an otherwise normal life.

A caregiver can walk away. Even if they didn’t want to. Even if they never would. Even if they would not find it ethical to do so. They are capable of doing so. The possibility of escape is there.

A caregivee cannot walk away. There is no possibility of escape short of learning skills that for a lot of us are impossible.

There are entire organizations set up for the purpose of dealing with “caregiver burnout”. Which is a real problem. But it’s a recognized problem. And when it happens, people often hear things like “You can only take care of others for so long, it’s time to take care of you” and “You’re so selfless, you deserve a break” and things like that.

But people who receive assistance experience burnout too. We learn to try not to ask for more than the bare minimum of what we need. Often, “non-essential” aspects of the relationship go by the wayside as a result of the power imbalances. We are aware that, no matter how much the person frustrates us, we depend on that person for essential aspects of daily life, and therefore we cannot show it without possible penalties. We know that we can’t walk away.

If we get burned out, or even if we object to the way someone is doing something, we’re more often labeled ungrateful and selfish. “Be glad you get anything at all.”

Moreover, when “burned out” caregivers attack or even murder their caregivees, it’s often said, “Well it’s tragic, but it shows how burned out we can get.” When caregivees attack or murder our caregivers, then the whole group of people we belong to is classified as potentially dangerous, our caregivers are given more sympathy for having to put up with people like us, and all of us stand in danger of losing basic civil and human rights.

Of course, selflessness is not defined by giving, and selfishness is not defined by taking. Selfishness is about being wrapped up in your ego, and it can be just as selfish to refuse help you need, as to refuse to give help you can and should give. Selflessness is being less wrapped up in your ego, and it can be just as selfless to accept help you need, as to give help you can and should give. People can give “help” in selfish ways and receive help in selfless ways, as well as give help in selfless ways and receive help in selfish ways. Most people engage in a mix of both, not one or the other, no matter which side they’re on, and most people are on both sides of such relationships, not just one.

But the way such relationships are often portrayed, is very one-dimensional and one-sided, and uses standard views of giving as always selfless and taking as always selfish. We become burdens and ballast, they become heroes and martyrs. Even if any particular individuals don’t feel that way, that’s the stereotype that things get boiled down to. Just as, while particular individiuals may not intend their portrayal of the “whole family is autistic” to take away from autistic people’s political voice, it inevitably will.

And it is important to acknowledge, not only the power dynamics involved here, but the fact that, no, no matter how much time a non-autistic person spends with an autistic person, no matter how involved in our lives they are, no matter how much they give to us, no matter how much they love us, no matter how much they do for us, they are not autistic. They never will be autistic. But autistic people will always be autistic, with or without non-autistic people around. We are the only people who live as autistic people, all day, every day. This is more than semantics.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

15 responses »

  1. Your logic is always so thought out.

    Still, I think there are people who are naturals at the helping profession. They’re too light hearted to burn out. It’s the control freaks who stress…

  2. Thanks, Ballastexistenz. I don’t care for “autism mom,” either. I can’t see there being “blindness moms” or “deafness moms” or “blind moms” or “deaf moms” or … “paraplegia moms,” I think that it tends to overly define the “Mom” as someone who’s entire life is nothing but autism. I’m not a “disabled” mom or “handicapped” mom, because my child has serious physical problems. It seems a little like self-martyrdom to say “autism mom” or “autism family.” But maybe I’m wrong there.

  3. I left a response in the comments to my post, in which I tried to explain my intent. That is, I wanted to express ? albeit with a poor choice of words ? the impact of autism on the family of an autistic child. That being said, you are quite right. I can never truly “know” autism, just as you may have difficulty relating to the impact on the non-autistic family members. There is a qualitative difference that makes the impacts impossible to compare, and I certainly don’t mean to imply that the impact of autism on neurotypical family members is as profound as on autistic family members. You had every right to criticize my semantic choice.

  4. I don’t think the whole family of an autistic person is autistic.
    But I do think of autism as a role or category within society, rather than something intrinsic to people labelled as autistic.

  5. First and Hand are only figures of speech, and as for accounts the reckoning of them is that no-one ever writes an accurate one, (any more than Enron can)

    What we write is only an impression, what our own perceptions of events and remembrance lets us.

    Where the truth in the account lies, is in the manner it is written not what it says. That is to say whether it is stylistically integral with ones appearance (not literal physical appearance, but what one represents to the world elsewhere), cos chances are if it ain’t then there is some pontifictives *1 going on :)

    A parents or siblings account tells you about the relationship in the way it is written n’est ce pas.

    *1 pontifictive = pontificating fictional statement, grandiose exclamatory lie.

  6. Wade, I don’t actually think it’s fair to talk about an impact on non-autistic family members, unless you talk about a whole system, not just a static thing of “non-autistic is normal, therefore insert autism and things become an ‘impact’ rather than another kind of normal”.

    My family has generations of people labeled variously (or unlabeled but would be labeled today) autistic, bipolar, dyslexic, dyspraxic, Tourette’s, and mentally retarded. Generations, on both sides. Our non-autistic family members are not usually neurologically typical either.

    We can only be considered as a system of people, not an impact of something on a normal family, because as much as some of us have tried to pretend otherwise (while others take pride in it), and as much as some of us have been ashamed of it, and as much as anyone has loved this fact or suffered for it, our family is not what is currently considered “normal”, although we’re all pretty normal to ourselves.

    I cannot imagine simply dividing our family along the lines of autistic/non-autistic, and leaving it at that, we are all kinds of people impacting each other in all kinds of ways, some of which have to do with neurological atypicality and some of which do not, some of which have to do with being autistic and some of which do not.

    It’s really impossible to say, “the impact of autism on the non-autistic family members” any more than I could tell you the “impact” of “bipolar” on non-“bipolar” family members. These labels are not bombs that were dropped into the middle of an oh-so-normal family, we’re talking generations of eccentrics and mad(wo)men and “slow” people and so forth here, a eugenicist’s nightmare (and personally I’m proud to be that nightmare).

    But, the fact that we are interconnected in a complex way (which is part of what I was trying to get at in the post), does not mean the non-autistic family members are autistic, any more than I’m “bipolar” just because some relatives are so labeled. The overall strangeness covers our whole family, but that’s because, we’re, in this day and age and place and time and so forth, strange (not so strange in other places and times, maybe).

    So perhaps I can’t know the so-called “impact” of an autistic person in an all-neurotypical (or all-thinking-they’re-neurotypical) family, but it’s because of my background, not because I’m autistic and somehow incapable of taking other perspectives.

  7. Larry – you’re not a postmodernist are you? I think you said you were once. If so, you are I are going to have an argument at some point I think (I’m a Marxist).

  8. Well poor old Marx, a product of his time and the society he lived in if ever there was one, his texts reek of late romanticism, he should have been a poet not a philosopher. How can we suppose that an individual such as he could possibly be able to predict the post modernist chaos we live in now. As for pseudo science, have you ever read Engels Dialectics of Nature ?

    These days I much prefer Weber to Marx.

  9. On the contrary, it would probably be quite interesting. I’m actually hoping that Larry is willing to debate all this with me – I’d love to hear his postmodernist view of the modern world. There might be quite a good debate here actually. Debates online are always better than real-time ones. They are of course easier for autistic people generally, but also if someone gives you some data that you haven’t heard then you can check it out before replying to it.
    Anyway, Larry, if you’re up for it, so am I. Give us yer beef.

    BTW Amanda if you’re already worried about this becoming a fight then you should see Lenin’s Tomb (my favourite blog apart from your own) where the comments page gets *really* raucous very frequently.

  10. Pingback: Autism Vox » That c-word again

  11. I know of a parent who proudly calls themselves and their spouse “an autism family” because they have an autistic child.

    They also have non-autistic children. I’ve been very tempted to ask: if one of their children ever says, “Mom, Dad, I’m gay/lesbian”, would they just as proudly start calling themselves “a gay family” or “a lesbian family”??

  12. Hi Amanda,

    happened to stumble by here.
    had a struggle this week where a visual perceptual challenge was taken as selfishness. I couldn’t get it.

    If a blind person fails to consider what you assume they see, is this selfish, egocentric? I think not. But those of us with eyes that see and brains that fail to process, are constantly shouted at, told off, lectured, for not LOOKING, CARING, ASKING etc.

    One can’t know what one can’t know. And then I’m told to do nothing without asking or being told first.

    So am I do be a bold person living as close to independence as I can, or one who society disables in order to appease them? I am proud at least I declared, I am not a broken orange, I’m a damned fine apple.

    But I did cry, then cried more, not because one person hurt my feelings, but because nobody educates these people and I’ve spent 20 years self advocating about things they can’t imagine just because I can hear and see even if processing fails on both levels.

    And the irony is this other person felt it was good for me to cry because I was gaining insight… shit, 9 books, a hundred interviews, hundreds of lectures, 12 years as a consultant… when will people learn that an information processing problem is nothing to do with insight, nothing to do with empathy….

    I’m tired of the projections and presumptions. But if I can’t make it ‘out there’ which of us can? So one dusts oneself off and goes back to the horse.

    aiaiai.

    Donna
    the arty autie.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s