On Functioning and “Functioning”

Not only did I present on deconstruction, autism, and digital communities at #cwcon this week, I also roomed (and presented) with a number of other autistic people.

I’ve made several autistic friends via the Internet, as I’ve mentioned in previous posts (and in the presentation).  I’ve even met a few of them one on one.  But spending time in a group gave me a perspective I haven’t had before.  Like:

  • The fact that I’ve never had an IEP, or was never diagnosed in childhood for anything, may be relatively unusual for autistics/NDs in my approximate age group.
  • I’m as awkward at autistic conversational norms as I am at NT ones, but I am less anxious about this awkwardness because something about autistic conversational norms feels intuitively right to me in a way that NT conversational norms never have.
  • Most of my autistic body-language norms have been completely extinguished.

It’s this last one that gave rise to the title of this post, because I can’t stop comparing myself to the youngest member of our group, who also had the most overt stereotypically autistic body language: lots of happyflapping, prancing, squeeing, and the like.  I’ve been trained for so many decades to Not Do That that I kept finding myself getting anxious in public on this friend’s behalf.

But here’s the thing.  Friend had far more overtly “autistic” body language than I did – which means that, in popular autism parlance, I was the more visibly “high-functioning.”  But Friend was also far happier, self-confident, outgoing, and comfortable navigating strange places than I was – which means that, from a “can get things done” perspective, Friend was the more productively “high-functioning.”

Put another way: I’m better at “behaving myself” NT-style in public; Friend is better at actually getting things done.

The goal of Applied Behavioral Analysis (ABA) and other behaviorist approaches to “treatment” is that the treatment target will become “indistinguishable from peers.”  From the point of view of this goal, I’m as close to a success story as one will probably ever get.  Friend is visibly not.  But the comparison of me and Friend makes it clear that being indistinguishable from non-autistic people is not the same thing as being a fully-functioning, mentally healthy member of society.

I’m not sure what Friend’s background with behaviorist approaches to autism “treatment” is.  I know that I was raised in an essentially behaviorist model, in which behavior that didn’t fit the NT mould was consistently punished, and in which any underlying needs or states of mind giving rise to that behavior (whether positive or negative) were never addressed.  So I learned to “behave” – but I also learned that my happiness wasn’t “real” or worthy of acknowledgement, and that my needs were neither “real” nor anything I had the power to control or address.

I also woke up every day for thirty years wondering if today would be the day I’d put my suicide plan into action.

In “Q is for Quiet Hands Getting Loud” (part of the “Blogging from A to Z” series for Autism Acceptance Month), Sparrow Rose Jones writes:

But when I look around at myself and my fellow adults Autistics and hear their stories, it seems to me that this “indistinguishable from peers” goal is one that only a tiny fraction of Autistic people are able to accomplish. Beyond the relative unattainability of “indistinguishable,” the stress of trying to reach that goal can do long-term damage to a person’s body and to their self-esteem.

The dirty truth about “quiet hands” and other attempts to train the autism out of us is that these sorts of therapies — teaching us to look others in the eye, stop fidgeting, stop rocking, stop doing anything that “looks too autistic” — is that these therapies are not really meant to help us. They are meant to make others feel more comfortable around us and to allow others to try to forget that we are

Autistic.

What I want everyone to take away from seeing me in public alongside anyone more “visibly autistic” than I am is this:

I’m one of the handful of autistic people who, for a few brief moments, achieved indistinguishability from peers.  What you are seeing now is the result of thirty years of constant work toward that goal.

It was not worth it.

 

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24 thoughts on “On Functioning and “Functioning”

  1. My daughter is nonverbal. Reading anything from a person with autism who is verbal, is like walking on a moon to me. Helps me understand. Helps me Try different approach. Helps me Change my perspective.
    Great read. Thank you!
    So my question is:
    Should we try harder to help our kids fit in, or should we try harder to teach the world about our kids?

    Liked by 1 person

    1. Both?

      There were times in my childhood where lessons on “fitting in” were very helpful. I still need people to explain to me sometimes, for instance, when I appear to have hurt someone’s feelings but I have no idea why. (I am always appalled when this happens and try very hard to avoid it, but I can’t always – even my husband has to remind me sometimes that it helps him not feel lost and confused when I mention *why* I am leaving a room instead of just randomly walking out on him. For instance.)

      The difference, I think, is that when these moments come up, I usually seek out the information myself. I ask if “So-and-So just did X” means I hurt their feelings, or I ask for a breakdown of the steps in navigating certain public/social situations (I had to have drive-thru food ordering explained to me about five times before I had a script for it!). And the person who replies is giving me information, not trying to force me to behave differently by either withholding a thing I care about or by imposing an experience I hate. (For instance, my husband explains what I need to do before I walk out of the room so he doesn’t feel abandoned, but he doesn’t slap me or withhold my dinner because I messed it up.)

      The world needs to understand autistic people better, full stop. To some extent, my parents’ fears that “nobody will ever tolerate your behavior” were justified – acting “weird” does get you shut out of a lot of desirable social things, from birthday parties as a kid to job interviews as an adult. (I’ve been shut out of both.) This is one place I find the label “autism” actually helps; often, when people have a name for the thing, it’s less weird and thus they are less likely to avoid it.

      That said, we need the label “autism” to mean “different in a set of ways you can understand and adapt to,” not “tragic monstrous burden,” which it still seems to mean to a lot of people, unfortunately. So there’s still a lot of teaching about autistic people to be done, I think.

      Liked by 3 people

      1. What you said about drive-thru really struck me. I was undiagnosed, and my parents didn’t seem to understand that I needed scripts. They’d throw me into situations, like handling my own dentist/doctors appointments, as a young adult just starting university. Because I didn’t have a script for it, and hadn’t had time to observe them enough to discreetly form one from watching them, I was beaten by anxiety and couldn’t do it. I wussed out, asked them to do it because I was scared, and was told “Don’t be silly!”

        I was informally trained, like OP, to Not Do That. Since my informal diagnosis (got through pre-screening, looked at the waiting list and decided that a pre-screening pass was good enough), I’ve become more overtly Autistic. I happy flap, I squee, I bounce, I purr and meow and squirm. I’m happier, I manage things better, but I always have this niggle in the back of my mind. I wasn’t like this as a child. I “had a handle on it”, which I know means I was exhausted and miserable from keeping a lid on it, but there’s a deep sense of shame that comes with deliberately giving in to my autism.

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      2. “They’d throw me into situations, like handling my own dentist/doctors appointments, as a young adult just starting university.”

        Oh man, my parents did this to me as a *kid.* Like expecting me to be able to explain things to teachers, to handle things on the phone, with authority figures, to find my way and explain when I was late or lost because of them….it just went on and on, from about the age of 6, that I’d just get tossed into a situation and left. Also signed up for stuff with no warning or input, and also just plain tricked into situations I would never have put myself in without preparation.

        And then it was a wonder that I had absolutely no trust for adults by the time I was about 10?

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    2. My suggestion would be to give your daughter the information on what you think might help her fit in, and then if she chooses not to act on it (maybe it’s not a thing she’s capable of, or maybe she thinks it’s not worth it, or maybe she’ll do it sometimes but not always) then don’t push it. Also that while you do this, keep trying to teach the world, because right now the burden of bridging the gaps between autistic needs and neurotypical expectations falls very disproportionately on the autistic people. (I’m the referred to Friend of this post, if that info helps give context or perspective on my suggestion.)

      Liked by 2 people

    3. You need to be a. Advocate and teach others to be accepting, and if she is accepted, she fits,,, and remind yourself and others thst we are all different…signed, moderate to severe partially verbal autistic…

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    4. I think it’s really important, when trying to determine how/when to help a child fit in better vs. getting the world to understand a child better, to distinguish between what kinds of things are matters of manners, consideration, and the rights of others, vs. things that simply make the child look different or things that identify them as disabled.

      So for instance, things like hand-flapping or toe-walking, not making eye contact, using a fidget toy, having interests that are unusual for their age, or having a style of play that’s different from other kids, using an alternative mode of communication like a keyboard or ASL…these are things that identify a kid as being different, but which don’t intrude on the rights of others. They’re not things that hurt anyone else, and if someone else is offended by them, that should not be made a child’s problem to solve.

      Whereas things like not hitting, not grabbing things that aren’t yours, respecting others’ personal space, not interrupting or monopolizing someone’s time or space…those are issues of consideration for the rights of others, which all *people* have an obligation to learn and respect.

      And then there’s the matter of social conventions and the basics of good manners, which yes, I think all children should learn, but I think can be taught without making it out to be a moral failing that a neurodivergent child doesn’t find them intuitive or obvious.

      So I guess it depends on what you mean by “fit in.” I think we can both teach kids what they need to know to move through society, and not make it their obligation to look as typical as possible just for the comfort of others.

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  2. Hugs and support offered, from the Friend.
    I used to “pass” more than I do now, but a couple years ago I was starting to burn out and realized I could pass or get stuff done. Took a bit of time, but I was able to get the natural stuff back and it’s less energy to look that way now that I have it back.

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  3. This is one of the best descriptions I have read to show how inhumane ABA is. I am developing a new biological theory of personality to be used in place of current psychological theories. There are many psychological theories of personality that are not used to guide psychological practices. Psychological practices are random, arbitrary, and benefit the administrator of the practice but harm the recipient. Excellent essay. Thank You.

    Liked by 1 person

    1. I’m beginning to think I might have to issue a clarification, since I wasn’t subjected to ABA specifically. But I was subjected to the behaviorist principles that undergird ABA, which is I think the damaging part.

      There’s something about any “fix the behavior” model that I find profoundly selfish on the part of parents/teachers/therapists – as you say, they’re “random, arbitrary, and benefit the administrator but harm the recipient.” As long as the targeted “behaviors” change, the administrator gets what they want, but that approach so often leaves the recipient in the lurch. “Behaving good” gets conflated with “being good” which gets conflated with “pretending you don’t have these needs you were trying to express with the targeted behaviors”…but you *do* have them, you can’t *not* have them, and so pretty soon you’re trapped in a thing where your whole life is about pretending to “be good” to avoid letting on that you are secretly really “bad” (i.e., you have needs you’re punished for expressing) inside. Meanwhile, all the adults think your life is great because you’re “being good” (and, if they were well-intentioned adults who just made a godawful mistake, they are completely appalled to discover that your life is in fact a living hell in spite of your “being good” – and they often have a very hard time grasping that you never told them it wasn’t good because that is precisely what you were taught never to do).

      …With that going on, it’s really no wonder a lot of kids and adults end up suicidal. It’s a logical conclusion: I am a problem, I am bad, I cannot keep up the act of pretending not to be bad, so taking myself out will solve the problem.

      #voiceofexperience

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  4. Yes, yes, so many yeses. I am an autistic woman in my 30s (so I grew up in the 80s and 90s) and one of my children is also autistic. I’m quite recently diagnosed so I’m still on a journey to sort of locate my true autistic self under so many layers of assimilation with the NT world. I was never diagnosed with anything before or in any special education programs other than a time when my teachers tried to bump me up a grade level and my parents declined. Nevertheless, I had that innate suspicion that I was different in some shameful way that I had to cover up. All of my sensitivities, all of my stims, all of my communication differences, I have suppressed for so long and turned inward, resulting in depression and anxiety – I am trying to uncover them now so that I might feel more okay and more myself.

    By contrast, I look at my young son who has only been subjected to the briefest evaluations, whom we quickly learned to accept rather than try to change (thank goodness), who is homeschooled, who is free to stim and pursue his interests and talk or not talk however and whenever he likes, and I see a person who is free and comfortable in his body. I hope he can stay that way, with our support. When I see him stimming around friends, around family, in public, I feel a profound relief and gladness that he knows he is free.

    Liked by 3 people

    1. I love this. Every time I meet an autistic person who is comfortable in their body, or a parent who encourages that, I feel such relief. Someone who doesn’t have to endure what I did! Yay!

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    2. I could have written this comment. I mean, I really could have. From the ‘recent diagnosis’ to the ‘my son isn’t like that.’ He stands and talks to me about his day, looking at his hands and twirling his stim sticks, and he is happy and whole in his different brain in a way that still brings me shame. But I am learning from him how to be free.

      Liked by 1 person

      1. I wasn’t clear – I mean that he doesn’t seem to feel the hesitance or shame about expressing his autistic self that I do. He does not shame me at all, I am so proud of him.

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  5. This made me feel better. A little. I grew up without a diagnosis as well, got one at age 24 and am now 30. I don’t know what to do! My entire life I was taught that everything I do or am is essentially wrong. Because people didn’t know I was autistic and thought I was just a NT child who acted out on purpose.
    I was trained to not behave a certain way and behave another. I was told that if I only wanted I could. That eventually everything would be fine. In the end it never was fine. Then I got diagnosed. Now I am told to behave in ways that I was always taught not to behave in, do things I was always told not to do and that it’s not my fault. What?!

    I can walk the streets and nobody can tell that I am autistic. But at the expense of draining myself to the very core. I suffer from anxiety disorder and depression because of all the years of having to be someone I was not. I can not find the words to explain this to people but I have started to try. If only I had known and everyone had known and I had gotten the help I needed. I am going to get that help now but now I am tired…

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    1. You might find it helpful to Google “autistic burnout.” It’s not an “official” condition, but it is astonishingly common among autistic people diagnosed in adulthood, and many of us have written about it. If it helps: you are not alone.

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  6. This makes me glad my autistic teenager Jeremy aged out of ABA. Zie’s anxious enough without trying to modify zir behaviour too much.

    My diagnosis as a child was that I’m a square peg in a round hole (this was from Sick Kids no less). I have no idea what my actual diagnosis is (other than depression and anxiety) but socially I definitely don’t fit. I’ve also found that the less I try to fit, the happier I am. And luckily, Jeremy’s and my quirks mesh pretty well.

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  7. Reading this was a revelation for me. I am autistic, diagnosed at the ripe age of 52; yet after diagnosis, I felt so relieved and like I could finally relax. I had so many stimming behaviors as a child but learned, through trial and error and endless parental lectures, that they were not acceptable. I was depressed and anxious much of my life, and I did try to commit suicide in my early 20’s. So much therapy, yet no one could ever fully explain why I felt so different and so uncomfortable…until recently.

    Now I don’t care so much. I’ve created a nice niche for myself writing and teaching special education, and I find myself relating to the kids in a much more relaxed way. So many adults are so insistent on their own ways, and they can’t even articulate or explain why those “ways” are superior or desirable anymore. I think both sides need to learn about the other. The NT side needs to realize that autism is not a tragedy or a lack of intelligence, and the autistic side perhaps needs to be willing to communicate and explain more what it’s like and what is needed.

    Liked by 1 person

  8. Hi Dani,

    Thanks for you post. I really enjoyed it. I had previously tried to comment but I don’t think WordPress posted it. I was really ranting on my previous comment. Ever since I came out of the “autistic closet” I have had comments from people that think they know better than a person that has to learn the “normal” behaviors his entire life (me). The usual comment that ticks me the most is, “you should get checked again.” Ugh, it makes me sick! People can be so selfish and inconsiderate. They talk as if they know you all your life, and all the times you had a hard time dealing with rejection and anxiety, fears and confusion can all go away with a simple, “you should get yourself checked.”

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  9. Reblogged this on ætheldria and commented:
    People can be very inconsiderate at times. Ever since I came out of the “Autistic closet” people make comment like “you should get yourself checked again,” as if all the years of learning how to fit in and be “normal” can simply go away with “get checked again.” I hope you read this if you really care about who we are as Autistic people.

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  10. feeling this and some of your other posts. i’m 34, and utterly burned out from decades of trying (mostly successfully) to pass as nt and as a guy (i’m a trans woman and came to understand that not long after getting diagnosed and starting to drop the nt facade). was all that effort worth it? not remotely, all i’m doing now is what i wanted to do in the first place, but with far fewer spoons available and a load of memories i hate.

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