What not changing us means.


I’ve recently written this as a reply to two different blogs, so I’m going to try to turn it into a blog entry in itself, modifying it a bit in the process.

It’s not where the desire to change a child comes from, that makes it good or bad. Not on its own. It’s, even more, what you desire to change.

Non-autistic people seem to have better instincts for what to change, and what not to change, in non-autistic children. Not perfect instincts, as is obvious from looking at any parent/child combination you can think of, but certainly good ones.

When confronted with an autistic child, many non-autistic parents, or even autistic parents whose belief system has been formed by a predominantly non-autistic world, have no idea what to do. They have all the good intentions they would have with their non-autistic kids, but they have fewer instincts for how their autistic kids operate. They may not know what growth looks like in an autistic kid. They may know so little about what growth looks like in an autistic kid that they mistake it for something they call regression, and panic.

When autistic people talk about not wanting to be changed, we’re not talking about wanting to remain static and unchanging throughout time. I actually have to strain a fair bit not to consider it deliberate that so many people misinterpret us that way. It’s easier to say “Well of course you want to change people, all people change,” than to look at what we’re actually saying.

When we say we don’t want to change, we’re incorporating all four dimensions in life already. We’re incorporating growth through time into our concept of the thing we don’t want changed. We’re saying “We don’t want to be changed” in the same way that a cat, faced with becoming a dog, would say “I don’t want to be changed.” The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.

When people say “But all people change,” they’re acting like we’re only talking three dimensions, leaving time out, an impossibility. And quite frequently when they say that they sneak in something about making us into dogs, only they call that part of the growth from kittenhood into adulthood. “Sure, learn about stalking mice and stuff, I’ll give you that, as compromise or something, but hey, wag your tail when you’re happy, not when you’re mad. That’s the right way after all. You can’t deny change. Didn’t I just talk about important skills of the adult dog… er… I mean cat?”

No, I’m not saying autistic people are a different species. But we do have a pattern of growth and learning that has enough distinctive elements that it needs consideration in its own right, the same as being a different species would. It goes deeper than either personality or culture, that’s for certain.

It’s only recently, though, that I’ve been able to figure out that it’s not entirely deliberate that so many non-autistic people can’t imagine us saying “We don’t want to change” without meaning “We want to stagnate.” The entire model for growth is not based on our kind of growth. My own brother used to tell me he was sent for a developmental evaluation because he went through the developmental stages “in the wrong order”. I was later poked and prodded for similar reasons. If they were such truly universal developmental stages, we’d all go through them in the same order. If developmental stages were based on some of my developmental stages, instead of the ones they’re based on now, most of the world would be regarded as severely perceptually regressive. Not that that would be any better, but I do retain skills that are important to my way of functioning but lost by most people in infancy if they ever had them.

Nonetheless, what we need is to be helped to grow in a very autistic way. We need the skills it takes to be autistic in this world, not the skills it takes to be non-autistic. Some of those skills will overlap with the skills non-autistic people need. Some will look the same but be accomplished by very different means. Some of the skills we need, and have, are ones that non-autistic people don’t have, or don’t have very much of, and some of those are essential to our ability to function. Unfortunately, given that we didn’t build the language, a lot of that last kind don’t have words as far as I know. But I’m sure many autistic people know exactly what I mean.

And since non-autistic people generally don’t know about this stuff, and for a whole lot of other reasons, we need exposure to a wide variety of autistic adults, I think. Not as stand-in staff/aides/special ed teachers/etc. While that’s a widespread practice among adult autistics, the training for this, if not careful, or even the setting, can impede the kind of learning that’s necessary in more than one way. But as people we know. A wide variety because all autistic people aren’t the same.

I learned more about myself and how to deal with the world in a few months from an autistic mentor, than I learned spending most of my childhood and adolescence being taken to various counselors and programs and institutions and so forth.

A word of warning about what I mean: the word “mentor” is overused and has been turned into something way more common than it is. It has even been misused in some places as another word for staff. I view any program, no matter who creates it, that claims to produce “mentors” for young autistic people or any other kind of people, as inherently suspect. (I won’t even get into the details of the guy who told me “My mentor’s mentor’s mentor was Aleister Crowley,” suffice to say I don’t mean that either.)

This kind of relationship, I think, cannot be planned or forced. I certainly consider myself lucky to have one such relationship in a lifetime. But she and I clicked and that can’t be forced or mandated. Autistic people who are not compatible in certain ways with each other being forced into that role can be horrid. I’ve been in too many situations where someone was being forced on me or someone incompatible who didn’t know it was trying to force themselves on me in that way, and even with the best of intentions that’s bad. The opportunity for things like that to develop naturally is important, and the opportunity is there more if we’re exposed to a lot of autistic adults.

And our parents also need exposure to a lot of autistic people, in a very non-pathologized way (not just “here’s the story of my life according to the DSM-IV” kind of things), because then our ways of growing won’t seem as disturbing or mysterious to many of them, and maybe they’ll be able to learn to distinguish cat-growth from dog-growth somewhere in the process. ;-)

There is not a lot of formula in this or anything else that I have said is a good idea. That’s for a reason. What is good for autistic people doesn’t follow a strict formula that can readily be explained. That last sentence can be, and often is, taken to mean “anything goes,” but that is not true either. A lot of things are bad for autistic people, and a lot of things are just not particularly good for autistic people. But what is good for us doesn’t fit a formula, and isn’t just an eclectic tailored hodge-podge of “therapies” either (there is nothing medical about learning and growing, just because we’re autistic doesn’t change that).

It’s hard, and elusive, to describe what it is, though. Many of the skills we need and regularly use to survive in the world have few English equivalents. The shape of how we do and don’t grow is not diagrammed out as it is for non-autistic children.

The majority of books on autism, even by experts, provide bizarre and improbable explanations of surface behaviors, and perhaps how to change them, and nothing more, often missing the most important elements of our lives altogether.

Even many books by autistic people involve us explaining ourselves in their terms. Some of the reason for this is that the official terms provide some of the only language we can find to describe ourselves, it can be hard to generate entirely new words for entirely new concepts on our own, or to filter out what other people do and don’t want to hear about, so many of us use the official versions even if we instincitvely know there’s something wrong with them. It’s rare that you find an autistic person who can describe these things without referring back to dubious concepts, and I certainly don’t find myself up to the task most of the time. This isn’t because we’re mysterious, it’s because we’re dealing with a language that has few reference points for our experiences. Even the aptly named paper You Don’t Have Words to Describe What I Experience shoves and force-fits our experiences into non-autistic boxes while trying not to.

Which, I suppose, is one of the reasons that the presence of autistic adults is invaluable, provided they’re not adults who regurgitate wholesale those force-fitted views of how we work or should work, provided they’re respected as people and not zoo exhibits or constant resources. People who understand how we do grow and can tell the difference between “cat-growth” and “dog-growth” and “something going wrong” really are important.

As an example, a quote from a Usenet post by an autistic adult:

When I first read this I could tell, without going back to check which child was whose, that your son was under six years old. I don’t want to denigrate the value of early intervention, which can give autistic children a valuable head start in learning to function in the world– provided, as always, that the intervention works with rather than against the child’s natural processes. But even with no intervention at all (as long as you didn’t put him into a sterile, mind-starving institution that wold cause environmental retardation in any child), he won’t spend the rest of his life doing that. Your comment is similar to a Martian parent who had accidentally been brought a human child (by a stork with confused navigation skills), and who, without learning about the normal course of development for humans, said, “I hope that someday my child will be cured of being human. I don’t want him to spend the rest of his life crawling around on the floor and eliminating in his clothes.” Your son will develop other interests as he gets older–maybe interests that will be more comprehensible to you and maybe interests that you’ll find equally bizarre, but other interests in any case.

That’s from this post by Jim Sinclair, years ago. Xe could tell what many non-autistic people are not familiar with, which is the typical ways in which autistic people develop over time. Xe understands “cat growth” (or “Earthling growth”, in that analogy) while everyone else is expecting “dog growth” or “Martian growth”. I find this all the time in conversation with non-autistic parents, who mean well but honestly believe that for instance no speech at the age of three means their child will never talk, when many autistic people learn speech between the ages of four and seven or even later.

It’s hard to explain these things, though, when we can so often perceive them, but other people are so often seemingly unable to perceive them at all. I suspect, in the end, it’s a lot like trying to explain non-autistic social nuances to autistic people.

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.

14 responses »

  1. As a non-autistic parent of an autistic child I find this analogy incredibly helpful. I don’t know what to DO with it, except add it to the mix of thoughts that help shape my parenting, but I hope that over time with that perspective in the mix the “what to do” will emerge. Thanks.

  2. Hi. My name is Janice. I have enjoyed reading your posts this morning. I started my blogging day at Daily Kos which is a political website. Someone posted an article and link to Getting the Truth Out; which sort of lead me here.
    I am a teacher. I have worked with many children over the years who are Autistic. All my experience is in Early Childhood Education, and I pretty much hate ABA.
    I have a favor to ask. I would like to correspond by email with yourself or any other individuals with Autism who would be willing to answer some questions for me about how I can best help my students to be happy and fulfilled in their life.
    I would appreciate feedback by anyone who is willing to help me.
    I am deeply grateful to Temple Grandin because she is the first person that has given me the insight that I crave. But I recognize that she is only one person and I wish to have a greater understanding.

  3. In a way, the people surrounding me (like my family, assistants, trainers and psychiatrist) want me to change. I a way, I want sameness. I crave for sameness.
    But some other way, the other way around, I actually am changing. In a unique way.

    Ballastexistenz; what do you think of the advocacy-tshirt: “I have autism, what’s YOUR excuse?”
    I saw one at Cafepress today and it made me think about autism being considered an excuse.. which I don’t agree with.
    I’ve hated autism, I loved it, I’ve made a stand for it, but I never saw it as an excuse, not for anything. ‘Excuse’ is not the same as an explanation. So what does one say, wearing an ‘excuse tshirt’?
    Or am I taking all of this too litterally?

  4. Hi Amanda. I’m very glad, first of all, that I can actually leave comments on your page now without setting up my own blog!
    What do you think of the idea that autistic people should develop a modicum of non-autistic social skills irrespectative of whether they should be ‘cured’ or not? I’m asking this because of an argument with a friend of mine a while back, who seemed to think that the autism rights movement was demanding the right for autistic people to have poor social skills. I’m assuming this isn’t the case, but am trying to work out all this stuff for myself and would welcome your input.

  5. I don’t speak for the whole ‘movement’.

    My own impression is that we should be exposed to knowing what different ‘social skills’ are (to the best of our knowledge), but given a choice as to whether we use them.

    For instance, it’s useful for us to know how others interpret our patterns of eye contact, etc, but wrong for us to be forced to make eye contact if we don’t want to. A more useful social skill there might even be to have a way of explaining our eye contact patterns (and what they don’t mean), rather than a bad mimicry of non-autistic eye contact patterns (although we could always be shown that if we felt like it and were able to, most people couldn’t tell the difference if we looked at a certain other place than the eyes).

    It has also been useful to me to know how other people interpret my mannerisms, but there’s no way I could stop them for long and stopping them is not good for me. But being taught how should not be done in a shaming and controlling way, like “See how people look at you when you do that? See what they think of you? Do you really want to do that and make them think that of you?” There are much better ways to learn it than that.

    There are a number of social skills that are specific to autistic people interacting with non-autistic people, that have nothing to do with emulating non-autistic people, and those are important too.

    For autistic people like me (and not all are like me), it’s important to be able to make sense of body language in the way we read it, rather than getting lost in the rote-learning of body language in the way non-autistic people read it. I am very capable of reading certain forms of body language, but they are never the kind taught or measured explicitly by others. I do it by mapping out patterns of movement rather than by “reading faces” or “looking at eyes” or any of the other things I’ve seen taught. That is not a non-autistic social skill, but it is one of many social skills that deals with non-autistic people while being a more autistic way of doing it.

    There’s a lot more than that. But I don’t see anything wrong with autistic people learning how to interact with non-autistic people, more the ineffectiveness or worse, of the ways we are often taught to do it.

    Additionally, it’s been shown, I think, that autistic people make lots and lots of attempts to communicate with non-autistic people, and non-autistic people are extremely unresponsive to us. So at times we have more social skills than they do (mainly, I suspect, because they’re in the majority and don’t have to develop social skills to respond to us, not because they’re innately worse at it).

  6. Additionally, it’s been shown, I think, that autistic people make lots and lots of attempts to communicate with non-autistic people, and non-autistic people are extremely unresponsive to us. So at times we have more social skills than they do (mainly, I suspect, because they’re in the majority and don’t have to develop social skills to respond to us, not because they’re innately worse at it).

    I’ve often wondered how much of the “male-female communication gap” alleged by Tannen and others lies in a similar phenomenon. Generally speaking, when such people refer to “men” and “women,” they mean “middle- to upper-class white heterosexual men and women.” (Our partner& come from a Jewish family on one side, and have described how the communication between the women in their family was nothing like the passive accomodating ‘female communication’ Tannen describes– frequent interrupting and strident declarations of “Aw, he’s full of shit!” were common.)

    But the point is basically that if you’re the type of person the dominant culture regards as ‘normal’– male, white, heterosexual, non-autistic, etc– you have no reason to develop communication skills for negotiation and accomodation with those who are unlike you. This isn’t to say that such people *never* can or will, of their own accord, but in most cases, you have power simply by virtue of being what you are; you do not have to negotiate for your rights, or use any tactics besides just speaking to get yourself listened to. Your culture and style are dominant everywhere, so you don’t have to learn anyone else’s.

    For instance, I don’t think it’s true that men are ‘innately worse’ at communication than women– see here for more details on that. There are some men I’ve communicated with far better than I have with most women. The fact that does stand out for me is that almost all of the men I communicated this well with were disenfranchised from the dominant culture in some way– in terms of race, culture, sexual orientation, religion, etc. This is a lot of what makes me suspect that power is a more compelling factor here than biology.

    Generally, yveryone who doesn’t communicate in the ‘standard’ fashion is treated as having something wrong with them. For instance, eye contact carries a different connotation in certain cultures– many Plains Indians consider direct eye contact to be impolite, which resulted in the Anglo-American culture considering them “shifty.” It was never considered that a lack of eye contact might have its own message, or might even be polite within the other person’s milieu; instead it was merely judged in terms of its deviance from the dominant culture. If you have enough power, you can afford to ignore such issues and contexts. You aren’t usually in danger of being seriously harmed if you can’t make yourself understood.


  7. I’d like to thank you for this. As a parent of a child on the autistic spectrum, I often wonder if I too, am on the spectrum. It is because others do not seem to “get” the nuances of communication, particularly with others on the spectrum. So many NT people are overly socialized, and don’t seem to know when they should back off and not push further. They assume that everyone is as socially-happy as they are. I think this is a form of mind-blindness ;)

  8. The connecting2worlds sounds like an excellent idea. Is there a similar place for parents to interact with autistic adults?

  9. I don’t know if there is or not.

    ANI-L has a Parents’ Auxiliary, but parents there have to be able to avoid being pesky with questions and stuff because autistics there don’t necessarily want to be put on display, so there’s all kinds of rules about how and where to ask questions.

    I guess one of the reasons I don’t know a specific place, is that most lists that include both parents and autistic people have parents asking the autistic people questions, it’s rarer to find a place where autistic people are not expected to answer.

    Although there’s of course a tone to the lists.

    The autism list that used to be at St. John’s has mainly some of the thicker-skinned autistics on it, and is mostly parents and professionals, and the cure viewpoint tends to be more valued there (although it’s currently run by an autistic person and supposed to involve people from all three groups in the list management).

    AutAdvo is largely autistic people and has a much more anti-cure stance, and there’s a fair amount of people there who are happy to give parents plenty of (often conflicting ;-)) information.

    ANI-L is also anti-cure in stance but has some restrictions on what parts of the list parents can post questions to, so that autistic people who do not want to read those things do not have to.

    There’s a lot of lists, and many of them I don’t read or post to often. (I am not on ANI-L at all at the moment, but I used to be, and I left a lot of the lists I’m on during a move when I was too stressed to deal with it.) You’ll note a tone varying from list to list.

    My current favorite is AutAdvo, but it doesn’t serve the needs or desires of all parents. (Cure-oriented parents are not likely to be happy there, although it doesn’t stop some from coming and trying to persuade us with the same arguments we’ve heard forever.)

  10. This is all very interesting. So to continue with all this, in order to facilitate communication between non-autistic and autistic peoples, to what extent do autistic people have to learn non-autistic social skills, and to what extent do non-autistic people have to learn about autistic ways of communicating? Or is that too simplistic?

  11. I think it’s likely too simplistic. Generally I think, as a friend once put it, that those for whom communication comes more easily (whether autistic or non-autistic) have a responsibility to use it more, especially in interactions with people where it’s more difficult. In situations when everyone’s trying hard and nothing’s working, interpreters are very very useful.

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