Why do you think I must want to be like you?

Standard

[I can now tell from the first comment that people who do not want all autistics to be of the same general type may take offense at the question. If you’re not doing this, you’re not the person I’m asking the question of. There are plenty of autistic people who do think that all other autistic people want to be roughly like them.]

This was the question I was asking when I wrote The Oak Manifesto. But it was not just a question directed at non-autistic people.

Non-autistic people do frequently hold the opinion that everyone must want to be like them. That, in fact, those of us who think non-autistic people do a good enough job being non-autistic but that we’d rather be autistic, are just repressed, in denial, hiding something from ourselves. Many autistic people have written and spoken eloquently about why these opinions about us are false.

But few autistic people have taken on the same opinion when held by autistic people about their own — real or perceived — category of autistic people. It is taken as a given that certain ways of being autistic are just self-evidently better.

When I was a child, my life was being directed by those around me — without knowing it, just as “what people should do” — towards the more valued category of autie. This is not how they saw it of course, not in those terms. They saw it as being all that I could be and fulfilling my potential. But I was being guided in the direction that, unchecked, leads to the “‘valuable’ and geeky even if socially inept” sort of person.

Puberty is when among other things your brain shifts around to its adult form. If my real potential lay where everyone thought it did, I suspect my brain would have shifted more in that direction. It had its own ideas about who I should be, though, and shifted in such unpredicted ways that not even I could fully recognize myself. In hindsight, though, even as a kid I saw things going very wrong that nobody else saw and I suspect the drastic shift was partly about righting those wrongs and putting me on the course I was meant to be on. Not that any of us recognized that at the time.

At any rate, it has become more apparent over time that I am who and what I am supposed to be. (In at least four dimensions, for those who view that in only three, leave out time, and assume stagnation is implied.) Right now, I am no more meant to be the stereotype of “HFA/AS” than I am meant to be non-autistic. I stand a better chance of becoming that stereotype than I do of becoming non-autistic, but so far there is little sign of either one happening.

There is an increasingly common view among autistics that I am just an aspie (I’ll use that term within this entry as a shorthand code word for that stereotype, apologies to those who use it differently) with “co-morbid conditions” making me “low-functioning” but which could be cured to release my inner aspie. That basically I am an aspie with defects. By this viewpoint, I could not possibly object to curation because it’s not autism they want to remove, just co-morbidities. Then I could be healthy and happy. Like they are.

The first thing I object to is the term co-morbid. That term implies a negative condition going along with another negative condition. It puts all conditions described, including autism (that’s the “co-” part), in a negative light and a highly medical perspective. It simply does not belong in use here.

The root of my objection, though, will be familiar to most autistic people. Autistic people are not just non-autistic people with good things taken away or bad things added. We would lose things deeper than personality if it were possible for us to become non-autistic. Non-autistic people think often, though, “All cure would mean is taking away these bad things, what’s the fuss?”

Well I simply am not an aspie stereotype with good things taken away or bad things added. If I ever became an aspie stereotype I would lose things that are deep down and important to me. Spending my time aping that stereotype (if possible at all) would be just as draining to me as passing for non-autistic is for people who can manage that.

By this I am not saying that “aspie stereotype is to my kind of autistic as non-autistic is to autistic”. I have far more in common in the areas that the word autistic has to do with, far more, with any kind of autistic person, than I do with the average non-autistic person. But there are different sorts of autistic people, too, and we do not benefit from being forced to act like each other or become each other.

By different sorts, I do not mean the traditional diagnostic guidelines. I certainly do not mean functioning level. I do not mean differences of opinion (sorry all who try to claim this, but “wanting cure” is not and will never be a true subtype of autism, it’s an opinion that crosses all subtypes, as does its opposite). I mean something deeper and harder to define and all but unrecognized by autism professionals.

I mean the reason that Joel Smith and I could instantly comprehend each other’s body language and thought patterns without having met before. I mean why Laura Tisoncik can similarly read Larry Bissonnette very easily, why Donna Williams said she and Jim Sinclair had something in common that not all auties do.

I mean why I can identify strongly with the writing and mannerisms and general patterns of several autistic people, and less with others, who might make more sense to each other than to me. These are reflective of some of the genuine similarities and differences between us, and they cross all official lines of categorization.

You can’t unwrap all these supposedly “co-morbid” conditions from me and release my inner aspie, any more than you can unwrap autism from any autistic person and release their inner non-autistic person. You can certainly look beyond your assumptions about appearances and perhaps see something far different than you initially realized, but that is not the same as us really having an inner NT or something.

Of course, you could divide me up that way. It would be really easy. You could say, “Okay, this person has symptoms of Tourette’s, catatonia, OCD, stamina issues, migraines, seizures, central pain, self-injurious behavior, and fill-in-the-blank for pages.” You could medicalize every single part of me but what you deemed the acceptable, autistic part, and you could try really hard to “fix” all those things (or in some cases imagined things) to release my inner aspie. But why are you so sure I have an inner aspie to begin with? And why are you so sure some of those things you’re trying to remove aren’t attached? (Here’s where I get told I’m advocating no medication for seizures, I bet. No.)

I’m saying the above simply because I know one of the common replies to this kind of post is “You must only be autistic and not have these other problems and just don’t understand how difficult it is, etc.” No. I just happen to view myself very differently than some other people with the same string of diagnoses and potential diagnoses. Don’t ever confuse viewpoints with diagnostics. So many people who remember that when it comes to being autistic and having viewpoints against cure, forget it when it comes to being the kind of autistic that everyone wants to turn into a different kind of autistic.

So no — to people who believe this sort of thing — I have no particular desire to be like you. No more, perhaps, than your desire to be like me, that you make so clear in your assumptions that it’s just plain better to be like you. I’m sure you’ve said similar words before, to non-autistic people. It’s also true that autistic people can convey similar concepts (words or not) to each other, as I am doing to you.

I will go through my life trying my best to be whoever I am meant to be. Who I am meant to be has often conflicted with the wishes of others, with the false constructs of proper lives that people’s minds come up with, with the values of any given society, and with many other things, not through any desire for conflict, but because of a steady and unyielding push in directions that are perhaps less traveled and less valued. This is not something I chose but it is not wrong. I am connected to the rest of the world, and I have a particular place in it, and I will do my best to be in that place, wherever it moves. The things I am saying here are not limited to me, nor am I claiming perfection or lack of struggle or hardship, merely that there are many roles to fill in the world and what people commonly think of as what people need to be doing is not always what we need to be doing.

Right now, my place is not to be an aspie stereotype, any more than it is to be a non-autistic person. Both have been expected of me at times, but neither has been all that forthcoming in the general plan of things.

Meanwhile, the way I am, the way all of us are, has a point to it. The point is not to make all autistics into copies of the ideal autistic any more than it is to make us into copies of the ideal non-autistic. We are different from each other for the same reason we are different from non-autistic people. And as usual, difference does not mean we need to be fixed or should long to be like those who think we automatically should want to be like them.

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.

23 responses »

  1. This was addressed to people who do think that, not to people who don’t. There are plenty of people who are quite explicit about this, and if you’re not one of them, I wasn’t addressing that rhetorical question to you.

  2. This was addressed to people who do tell me what I think, not to people who don’t. There are plenty of people who are quite explicit about this, and if you’re not one of them, I wasn’t addressing that rhetorical question to you.

    tinted

  3. It doesn’t make any sense to assume that anyone would want to be like me, or like anyone else. However, I believe I know what you are talking about — this is something I encounter all the time, and did encounter while growing up: “But everyone wants X, why shouldn’t you want X!” I think there is a lot of needless sadness…I read about parents grieving that their child will likely never play Little League, or that their child doesn’t play at birthday parties the same way other children seem to (if their child even attends birthday parties).

    It has never, ever made sense to me…this projection of sadness, this lamentation on behalf of a person who has in no way indicated that they feel shortchanged. It is one thing if someone says, or types, or otherwise indicates that they themselves are upset by not being included in a particular activity, or that they themselves really want to be able to do a certain thing which seems beyond them at the moment. It is quite another thing to make assumptions about what is and is not experiencing life to its fullest.

    I do think that all people, autistic or otherwise, need to be nurtured and taught and helped to reach their potential — and I realize you do not say, and have never said, that anyone should just be left alone or neglected or not parented. I think it is possible to raise or teach someone without placing so much of one’s own agenda and definition of “progress” on the person being raised, taught, nurtured.

    What you experienced growing up seems to be a case of people perhaps thinking there was only one way to do things, or several possible ways that still did not complement the reality of your own brain and body. One thing I’m curious about, though, is what sorts of things you would recommend to people who are raising a child who is autistic, different, disabled, etc. — what sorts of things should be done? (Besides the obvious notions of respecting the individual and recognizing their humanity, etc.)

    You (and I, for that matter) do write reasonably often about what shouldn’t be done, and what assumptions shouldn’t be made, but there is less information being put out there as far as what actions would actually be helpful. Acceptance is good. Avoiding abuse is good. Not making assumptions is good. Not using aversives is good. But children still need to be parented, and I do think that there are parents out there who do not have any intention of hurting their kids, but who end up doing so anyway simply because they don’t know what else to do.

    It must be recognized that in most cases, autistic persons do not learn the same way, or as effectively in the same environments, as nonautistic persons. Regular classrooms are usually nightmarish, from both a sensory and social standpoint. The answer obviously isn’t to treat autistic people exactly the same as neurotypical people, but the answer also isn’t to subject autistic people to dehumanizing training methods that sacrifice the person for the sake of appearances. Parents like Estee of http://joyofautism.blogspot.com/ seem, in my estimation, to be on the right track, but I would really like to know what you think on this subject. Maybe you’ve already written about it and I missed it, or didn’t notice it, but I am curious.

    Hopefully there’s nothing offensive in what I’ve said here. If there is, let me know — I make no claims to be perfect, but I do try to examine and change my own prejudices and rectify my own ignorance when it is pointed out to me.

  4. tinted, you came to my blog and addressed me directly. Please don’t twist things around so that you weren’t “really” addressing me. If you have something to say about the post, please do so.

  5. zilari: Nothing in what you said was offensive. I think the problem is that if you had a formula for doing it right, then it wouldn’t be the right way. I think we do point to what the right way to do things is, in our posts, but I do not think that there’s ever going to be a way to say “Here, do this.”

    The post was mainly trying to address, though, not the generic parent thing that many other people have addressed much better many times over, but the equivalent thing happening within the autistic community. Where I hear statements all the time like, “Non-verbal autistics just have a lot of co-morbid conditions and need to have those conditions treated in order to be more like the rest of us,” among other things.

  6. Ballastexistenz

    This blog is publicly viewable and the comments may be read by anyone who comes here.

    I’m sorry if you don’t appreciate my communication style. Reflecting back what I read was the most concise way I had of expressing my views. I can’t articulate it better than that.

    tinted

  7. Yes, the comments are publicly viewable. However, why would you say “Who are you to tell me what I think?” in direct response to “Why do you think I must want to be like you?” if you were not talking to the person who said “Why do you think I must want to be like you?” and assuming they meant you?

    Otherwise, you could just post “Who are you to tell me what I think?” somewhere else on its own and avoid all the confusion. I would not think for a moment that it had anything to do with me, if you hadn’t posted it in direct response to something I said, even quoting what I had said.

    Posting it the way you did is similar to going on Usenet, and replying to someone’s post in this fashion:

    ***begin example***

    From: tinted

    ballastexistenz wrote:

    > Why do you think I must want to be like
    > you?

    Who are you to tell me what I think?

    tinted

    ***end example***

    To then say that you’re not actually talking to the person you’re replying to, would strike anyone as a little strange. It’s the same with blog formats. While they can be read by anyone, the manner in which you just posted this makes it look as if you are replying to me. It’s the equivalent of posting a reply in the above manner on a thread someone else created, instead of starting your own thread called “Who are you to tell me what I think?” without referencing the other thread.

    If you had posted “Who are you to tell me what I think?” on its own somewhere else, I would never have even thought to reply to you, because I was not telling you what you were thinking when I posted this. Posting it in reply to a blog post (especially while quoting a “relevant” part of the blog post) means that people will read it as having something to do with the thing you have just quoted and replied to.

    If what you wrote was not in response to me, I am at a loss for why you chose here to post it and my post to quote on the matter. Maybe if you explained your intentions, it would make more sense.

  8. Oh, maybe tinted was adding to the post.

    Amanda: Why do you think I must want to be like you?

    Tinted: And furthermore, who are you to tell me [that I want to be like you]?

    Is that what happened?

  9. I can’t really explain it, but I’ll try. There are elements of echolalia or mirroring. That is somewhat automatic, a response to words on screen rather than personal.

    It’s also a reflection of vibes of outrage, which I see as a running theme throughout this blog, and which is backed up by supportive comments from others.

    I tried to join in by mirroring that outrage myself, by use of a similar rhetorical question, which seemed to fit as a reply. I liked the way it naturally rolls off the tongue as a rsponse. That modifies and enhances the echolalic aspect. Like an eye for an eye. A you for a you. (And so on. And so forth)

    Words like symmetry, reflection, resonance come to mind. Not everyone ‘gets’ it, and if you don’t, then it’s hard to explain.

    I guess it backfired!

    tinted

    tinted

  10. As for the usenet analogy, I didn’t see it like that. That is a conversation among individuals. Reading this blog was, to me, like walking round a museum or art gallery and signing the guest book at the end.

    Comments about the exhibits are not directly addressing the artist and are to be read by other viewers as much as anyone else.

    Things took an unexpected turn, I agree.

    tinted

  11. I think most people want to be themselves (based on a principle of enlightened self-interest – most people don’t really run their lives that way as far as I can see), and if they’re happy with themselves and the way their life turned out, they might want others to be like them.

    It’s the people who are unhappy with themselves for some reason who do the damage to themselves and those they care about.

    And I guess, imitation being the sincerest form of flattery, must also be a form of caring. At least that is what they think to some extent.

    What do you think?

    There’s not enough seeing others perspectives as valid, I think. If there is it’s a diluted and politically correct form, that worries me.

    And I too would like to know more about what to do right. I agree that there shouldn’t a formula. I think right evolves naturally and organically until we take it for granted and then it calcifies.

  12. I do not know what to think, because I cannot follow what you were writing. For instance when you say “there are,” I can’t tell if it’s in reference to something else you said or a totally separate statement. (Not meant as that I disagree, or agree, I simply don’t understand the words when put in that order.)

  13. In terms of what people should be doing. It might be interesting to look at Dave Hingsburger’s book Do? Be? Do?. While it is from a behaviorist standpoint when it comes to how to teach developmentally disabled people (which is probably not the right way etc), there’s a lot about what we need to learn, when shaped to who we are instead of who we are not.

    I think that “shaping to who we are” is an important aspect of it. By “who we are” I do not mean “negative personality traits should not change” or anything like that, I mean the general pattern. Find out how we learn best, where our interests lie, what kind of person we are, etc, and go from there. That’s the book in which Hingsburger talks about “finding who God meant you to be and being that person,” and as I said before I suspect even an atheist (or polytheist) could understand the sentiment there.

  14. Where I hear statements all the time like, “Non-verbal autistics just have a lot of co-morbid conditions and need to have those conditions treated in order to be more like the rest of us,” among other things.

    Ah, now I understand…reading back over your post again, I can see how you are indeed referring to a phenomenon within the autistic community.

    I’ve seen less of this than the “generic parent thing”, however, I do know what you are referring to…I’ve seen people with an AS diagnosis write on various forums / sites about how maybe they don’t need a cure, but that a cure should still be researched for the sake of those who are “lower functioning”.

    I get the impression that the people who write these sorts of things haven’t thought very carefully about what “functioning” really means or (despite their own diagnosis) encountered or even read about people who do not meet either the “high functioning Aspie” stereotype or the “low functioning ‘tragic figure’ autistic” stereotype perpetuated by media, etc.

    Which is why writing things such as what you said in your original post is important.

  15. I think that most of the world’s prejudices have to do with assuming that other people want to be like us, or that they would want to be like us if they knew more about us.

    It’s hard to avoid seeing others in the light of one’s own assumptions and values. It requires regular (and often uncomfortable) effort to examine one’s own prejudices.

  16. Pingback: Ballastexistenz » Blog Archive » Hey, watch it, that’s attached!

  17. Gotta call you out on this one, Amanda:

    Are you implying that there’s no such thing as “better”? Are standards ‘wrong’? Are you better (for example) for being able to use communication methods — of whatever type — than you were before you had access to communication? Helen Keller (as an example of another rather articulate and passionate disabled person who tried to make her own ‘community’ better) sure seemed to think that having access to communication improved her.

    So, no, I don’t buy the notion that there’s no merit to “functional levels”, because you yourself say numerous times on this blog, that (for instance) having access to a wheelchair, and being able to get out and about somewhat, has made you better. So you can’t have it both ways. Either standards ARE in fact useful, and having certain skills and abilities are actually better, or they’re not, in which case your aquisition of language is utterly worthless.

    Additionally, you seem to think that just because something is (as you put it) “ATTATCHED”, that makes the thing somehow sacred, in the sense of not being something to “tamper with”. Okay, so why exactly DO you take meds to control your seisures? Seisures are, by your own definition, “attatched” to various aspects of your brain, so why don’t you “embrace them” as a wonderfully valuable aspect of yourself? Because having fewer of them (or none at all, if possible) is actually BETTER?

    It’s one thing to advocate for better services so that Autistics — or any other populace — can be more fully participatory in the world, and maximize their own potential. It’s a FAR different (and less noble) thing to make the claim that standards have no place, or that improvement is meaningless.

    Sometimes you’re brilliant, but other times you are just glaringly, terrifyingly wrong.

  18. No, that’s not what I’m saying. That’s too simplistic an interpretation. I unfortunately don’t know how to differentiate what I am saying from your interpretation of it.

    I don’t think that standards have no place.

    I don’t think that everything that looks like improvement to most people’s standards, actually is improvement genuinely.

    I don’t think that a functioning level exists in an overall person.

    I do think that a person functions at a particular level in a particular thing at a particular time.

    I do think that sometimes what is real improvement looks like regression to people who don’t know what they’re looking at and who apply the wrong standards

    I don’t think something being attached makes it sacred. I do think something being attached makes it worthy of more consideration than some people give it when automatically discarding it and medicalizing it and turning the whole thing into something awful.

    I’d be terrifyingly wrong if I were saying what you claim I’m saying, but I’m not saying it and a longer and more careful (possibly slower also) look around what I write would tell you that.

    I’m urging caution in standard assumptions.

    I’m saying that sometimes there are better ways to be but they’re not always what people think they are, they’re not always what people see at first glance.

    I’m saying that some things don’t translate well.

    (And I am sorry for not giving a more detailed reply but I had two very word-intensive interactions with people online today and I can’t get everything into words quite right.)

    I’m not saying being one way is never better than another. I’m saying that when people automatically assume it, and start tugging on things they don’t understand… it’s simply never quite that simple. Prejudices creep in all the time, and oversights of things that exist but people don’t look for, in favor of things that might not exist but they see anyway.

  19. By the way, Henry, if you’re still reading:

    Before I wrote this entry, I’d written something in a private email to someone else. I just found it again. It went:

    It’s like grabbing someone’s toe and finding out that it’s attached only after you pull it off and the leg gets infected and they end up losing the whole leg because you didn’t notice the toe was attached to anything.

    Which is hardly the same thing as “sacred”.

  20. Amanda: I went to read The Oak Manifesto, and when I clicked the link for it, I got something completely different………..

    It was a different webpage with links for various resources……..www.autistics.us and other things……is it in the library at autistics.org?

    thanks
    Athena

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