What if I were to say…


…in response to the people who are so frequently “reminding” me of the presence of things like institutions, and of people designated as LFA…

“Yes. I totally agree with you. I have been institutionalized, and I have been regarded as LFA, and I regard this kind of autism as a total curse. Those aspies can say what they want, but they have never been through the kind of hell that we have. Autism of this kind is a real disability, not just a difference, and I totally believe in research into prevention and cure.”

I want to know how many of them would strive, as they do now, to pull me into some other category. How many of them would still continue to say, “But you are different. You’re not like the people I’m talking about. They cannot and will never communicate even the simplest concept.”

How many of them would say, “Your end of the spectrum has agendas, the other end has needs”?

How many of them would go over every detail they either find or imagine about me with a fine-toothed comb to differentiate me from the people they claim to be representing?

Very few.

Even when a 40-something woman who identifies as being “high functioning,” posed as a 25-year-old “low functioning” man, many did not question her. Even when they knew her secret. But they would have been all over her in an instant, and probably accusing the rest of us of faking as well, if she hadn’t portrayed autism as one of the worst fates on the planet.

Meanwhile, people have looked over the lives of the rest of us for every supposedly contradictory or slightly misstated detail, while the same people have ignored glaring instances of lying, exaggeration, contradiction, and just plain inaccuracy in autistic curebies.

So for any curebies who happen to be reading this, I want you to think really honestly about this. You don’t have to tell me what you think, just think about it. If I were to claim that I was low-functioning (a category I currently reject, but have been officially put into), had experienced institutions (something that is true), described these things (along with, of course, self-injury and other “horrors of autism”) in exquisite detail, and said that on the basis of these things, I wanted a cure, I wanted autism prevention, I thought being autistic was worse than death, and so forth… would you still be telling me “You have a system of communication, therefore you are totally different than the people I want to cure/prevent”? Or would you welcome my input uncritically? What if I put in several pieces of information you knew were false, such as “I’ve never spoken in my entire life” or “I was institutionalized for ten years”? Even then, would you let it slide for the sake of my getting your message out there from an “authentic” source?

Think about those things, and think about them seriously, before you start nitpicking for details to set us apart from the people you claim to advocate for.


About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

13 responses »

  1. I think everybody goes through their own personal hell.

    Some people come out of it. Some people don’t. Some are marked by it and have it influence their everyday lives.

    I’ve been long enough around to know that everyone has needs and agendas both. And they are complex. And unconscious. And we aren’t always accountable for the things they make us do.

    Those two pieces of information can be fairly easily disproven. But what about other pieces of information, like how you experience yourself? And you could well have put some false things in “People like me” – that entry which you wrote. Or is that all true, and just a grain of salt?

    I think everybody is communicating all the time and neither we nor they are aware. I can feel the weight of communication whenever I am online and offline.

  2. How I experience myself, I don’t tend to lie about. In fact I have made a habit of being a little more truthful about it than I’m comfortable with.

    Everything I wrote about in that other entry (if it’s the one I’m thinking of) is true as far as I could write it. I of course was not able to write everything that is true about me, or everything I identify a lot with in others, but that is because of language limitations.

    And language limitations play the most major role in my making inaccurate statements about myself, especially under time pressure. The rest is just the usual degree of… most people are unaware of certain aspects of themselves, I’m no different there. And then of course there’s incompleteness and what people fill in the gaps with, but I’ve learned over time that I can’t control that.

    And likewise, I don’t believe in non-communicative people. Nor do I believe one end of the “spectrum” has needs and the other end ‘just’ has agendas (I don’t even believe in “ends of the spectrum”). Those are concepts I was applying as an example of “Gee, if I said this, would curebies be looking nearly so hard at my life to find things that differentiate me from whatever their version of ‘THEM’ is?”

  3. That’s good.

    People can trust you more and you can trust yourself.

    I see. People do fill heaps of gaps when the language isn’t there. It can be really suggestive.

    I don’t know if curebies would do that exactly. Maybe curebies themselves can speak out on this, but I doubt they would do so on your blog. If you do, you’re really brave!

    It is that one I was referring to. I can see well enough the difference between “true as far as I can think of” because that’s what I aim towards too.

    And the curebie’s perception of THEM would be very interesting. And maybe disturbing and creepy. Are they only looking in the mirror, or projecting?

  4. Thinking and thanks.

    Another autism I know whose daughter was said to be “HFA” at 2 1/2 and now is “classic” noted that she’d like to do away with all those distinctions and just say “autism.”

  5. One reason I’m truthful (as far as I can be) is frankly something akin to laziness. I’ve tried to sustain lies in the past (not in this context), and keeping track of them is exhausting, time-consuming, and draining, and I’m not even good at knowing which part of a lie to tell to get people to believe it, and which will look like a lie.

    It’s just too difficult to bother with unless there’s something like an immediate and huge threat (if someone were looking for someone they wanted to kill, I wouldn’t hesitate to say “I haven’t seen that person” even if they’re hiding in my house).

    The biggest source of remaining inaccuracies (besides the usual “nobody has total self-knowledge” one, and the language one) is actually what happens that I wrote about in the post, Let’s Play Assumption Ping-Pong!.

    And when people assume wrongly on those things, I do try to clarify. (Although when people are doing so in a threatening/mocking way, I reserve the right to clam up and ignore them because that isn’t worth my time.)

  6. I also wonder, what if someone who identified as “having HFA” were to say that “their kind” of autism needed a cure more urgently than “the other kind”, because LFA/ nonverbal/ mentally disabled/ comorbid/ fill-in-your-category-of-distancing autistics had less awareness of their difference/ suffering/ whatever. With of course the stories of how hard it is to keep up an appearance of normalcy, and how painful it is to almost fit in but not quite. And that therefore, the worst thing anyone could do to the “other kind” of autistics would be to make them less autistic. Making them _appear_ less autistic would be all right, because that would make them more accepted; but being the “other kind”, they would be so inherently different as to remain largely unaware of themselves, so it wouldn’t harm them like becoming less autistic would. And of course, if the “HFA” autistic saying all this could not get a cure to make them non-autistic, they would rather be “LFA” than remain as they were.

    I feel like I’m venturing into the absurd here. :-/

  7. The words are not the things….especially with functioning labels. Assumption ping pong was interesting for me. I am forced it seems to let people think all kinds of inaccuracies out of the trouble with language being tied to common experiences which are simply not so ‘common’ here in every way….often, just common enough for people to misunderstand a bunch of nuances.

    I talk. I don’t always talk. I don’t always open my ears up for listening. That doesn’t mean I’m purposely ignoring anyone, I just haven’t “turned the mic on” if that makes any sense. I feel bad but then it requires effort for me to do something they tend to do effortlessly nonstop. This never seems to get understood well at all. They won’t fathom it…not that they can’t. All “differences” must be “lies” to them because of their constant consistency monitoring.

  8. HFA and LFA are just labels, pigeonholes.

    Put me in a room with a group of little kids and some mats and there whoever’s watching would assume between REALLY odd NT and HFA, depending on what they know about autism.

    Put me in a grocery store and suddenly I’m LFA, even if I’ve been to that store 10000 times and know where everything is. Especially if they’re out of what I need.

    But I’m the same person in both those settings. So it’s just people’s perceptions that shift.

    I also agree about not believing in noncommunicative people. I realize there are people who communicate in ways society/their parents/whoever doesn’t LIKE, but they’re still getting their wants & needs out there.

  9. Echospectra: I’m trying to remember this one post, about an autistic kid (dxed with AS I think), who was convinced that “low functioning” kids couldn’t perceive that they were different and were therefore “happy”, so…

    But knowing he is autistic and railing against the unfairness of it all when he measures his life against that of his NT friends is a source of depression and despair. We get, “Why was I born? I hate you for having me. I should have been an abortion then you would all be happy. Why don’t I kill myself?” Usually when he is angry and wants to hurt us, which he does with unerring accuracy.

    This is easy compared to when he hurts himself. “I’ve lost/wasted my childhood. I wish I was really autistic then I would not know.”

    Once he set his alarm for midnight and decided when the the alarm went he would be Kanner autistic instead of Asperger. He would be like the boy he looked after on a Riding for the Disabled Holiday, who was autistic and happy because he was learning disabled and did not know he was autistic. [if you know the song ‘How Sweet to be an Idiot’ by Neil Innes you’ll know exactly where Matthew was coming from] Anyway, the alarm goes and Matthew sits up in bed, tongue lolling, eyes distant and starts flapping. I just happened to be in the room at the time and I went head to head and shocked him out of it, put the lid on that one in a big way. The best thing I’ve ever done. If that had become an obsessive compulsion…?!

    That’s from this Usenet post and I just realized, to my alarm, that it was Mike Stanton’s (same one who posts here from time to time) son who did that.

    I think that some autistic people, don’t realize that other autistic people do probably know they’re different in some way, or that they’re treated wrong, and are not as unaware as they look, so can almost kind of romanticize what they view as “low-functioning” autism as somewhere where you don’t have to be aware you’re different and don’t have to suffer. I saw that in… what was it, Jessica Peers’s book too. When she was a teenager she was very jealous of another girl at the institution they lived at, because she viewed the girl as pure and unaware of her difference, and herself as tarnished and ugly and miserable. Seems to be a common, if mistaken, reaction.

  10. Kassiane wrote: But I’m the same person in both those settings. So it’s just people’s perceptions that shift.

    That’s what I’ve always tried, and often failed, to describe to people.

    The fact that people look at me and go “LFA/HFA/LFA/HFA/LFA/HFA” faster than the average metronome, doesn’t say a thing about who I am. It doesn’t mean there’s two of me, one “high functioning” and one “low functioning”. It means the classification systems are not accurate.

  11. Seems to be a common, if mistaken, reaction.

    Yeah. I’ve known (mostly of) some people who thought a lot like that; I remember I once spoke to someone who explained why they wished (or thought they wished) they’d been aborted. I was sort of vaguely wondering if curebie parents of “HFA” kids might buy into it. If they did, you (general you, possibly you) could show the HFA curebies vs. the LFA curebies and maybe get it into their heads that it’s all a matter of perspective. OTOH, curebies seem to have a tendency not to grasp this sort of stuff regardless of how it’s presented to them.

  12. Nobody I know offline (or online, for that matter) has so far questioned the fact that I’m on the spectrum. However, I’ve had a few say, “Well, you might be okay and I agree you don’t need ‘curing’, but there are some people who are really suffering who don’t function quite so highly. And it would be great if we could cure them.”

    Generally, these are people who haven’t seen me in an overloading environment. Nor have they seen, heard about, or read about the notion of drastically varying skill levels and inconsistency in terms of how often someone can perform a particular task. Most people still don’t have much of an impression of autism beyond the “low functioning / high functioning” stereotype.

    Because I have a job and live independently (though with a housemate — he and I have “complementary” abilities that help us maintain the living quarters, etc.) I am considered one of the “high functioning lucky ones”.

    But nobody who just looks at “has a job, lives independently” has any idea what it took to get to that point, or the details of my employment (such as the fact that I bypassed the interview process), or about the fact that many aspects of how I live “successfully” are quite precarious. If I had a boss with a slightly different personality, if workplace policies were just a fraction different, I would be unemployed. As it is, there are very, very few places I can work due to sensory issues, cognitive inconsistency, and a flat-out inability to do certain things at all unless I am permitted to do them in particular ways.

    I did have relatives who wanted me institutionalized as a child. I had teachers drag me out into the hallway and demand an explanation for how I could possibly be the age I was considering my “behavior”. There are people that I used to communicate with, that I thought maybe were friends, but that I haven’t seen or talked to in several years after they saw me in nonverbal overload in public.

    Basically, there is no one thing about me that someone could look at and use as a valid basis for an assumption that something else must also be true about me. When I look at or hear about someone else, I can’t very well start making assumptions about them based on surface things like speech fluency, movement patterns, etc. It wouldn’t make any sense for me to go around making assumptions about other people if I don’t want assumptions made about me. That seems simple, and I’d feel like a huge hypocrite if I insisted that I didn’t need “curing” but other people did.

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 )

Connecting to %s