All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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28 August 2010

Is Adaptation Bittersweet?

I was recently asked, "Would you consider adaptation more difficult, and thus more exhausting, as an aspect of the social challenges of autism? Or is that something you would disagree with?"

Yes, I do often consider adaptation to be difficult and exhausting.

Imagine being relocated to an unknown planet. To gain the civility and respect of the inhabitants, you must adapt by submitting to strange painful shoes that alter your feet so you can walk on their terrain how they see fit. In addition to the shoes, the natives have decided they do not like the human quality of your voice, and so--to fit in better--you must use a voice modifying contraption. (Your voice is intelligible without the modifier, but it is viewed as atypical, ugly, and as something that must be corrected.)

The natives have decided lots of things for you, and they neither ask nor care for your input. They collect monies to open leading research centers to push for solutions for your kind. Scientists conduct studies without consulting you or your people. The natives talk about you without you. Even worse, they see to it you do not forget your human eyes fail to capture what their perfect ideal eyes do, and that though you can see, your eyes are deemed substandard and in need of a cure. If the natives are not discussing your defective eyes, then it is your appalling feet, your eccentric voice, or your odd human mannerisms and traits.

Your reward for adaptation and assimilation on this planet means the natives might hold you in higher esteem for making a conscious effort to submit to their conventions. Perhaps they are less likely to look upon you with eyes that scream: Inferior! Opportunities open up and life flows smoother, but only for a lucky few (mostly the token specimens of your kind).

Compliance will lead to consideration, tolerance, and understanding..."I'll keep trying," you tell yourself. But burnout is inevitable because, in spite of your best efforts, the natives still view you as in need of being fixed--or better yet, extinct. And they have no shame in discussing eugenics for your kind. Some go so far as to wish you would drown or be electrocuted by lightning.

You're offered anything from medications, surgeries, and treatment to quackery in order to transform you into an acceptable individual. You watch your people dragged off to asylums and institutions, or relegated to the fringes of society. And there's not a damn thing you can do about it but advocate and raise an army of like-minded individuals to reason with a body of native legislators and service providers who do not have the decency to treat your actions or words with respect. Dear Zaos, what you have to go through to gain an inch of consideration and equality! You search your mind for valid reasons to justify why the natives believe they reign supreme. What is this indispensable planet that dispenses! Is there any hope?

Resentment grows, and when you've had enough of putting up with native ways you find yourself interacting with them only when necessary.

At this point, what a relief it is for you to connect with your own kind. You are beyond joy to find an established community where you can be yourself without anxiety, fear, and ridicule. Concepts of civil rights and pro-diversity are music to your ears. As word spreads, some natives step forward and eagerly assist and support your community. But still, there are those who continue to make fun of you, kick you down, and demand conformity. Natives who deem themselves less barbaric and cruel simply ignore you because they do not understand you; a percentage admit to being too uncomfortable to interact with you. Can you blame them? After all, there are too few models to show them the way.

Adaptation is as difficult and exhausting as it is useful. It is often bittersweet. Home is where we make it, and it should be in our hearts. For some, the only home they have is their community.

The worst sin toward our fellow creatures is not to hate them, but to be indifferent to them: that's the essence of inhumanity. -George Bernard Shaw


  1. Thank you for this!

    To continue with your metaphor, for me I think it's like I was raised as one of the "advanced civilization," never knowing why I didn't fit, never knowing why trying to fit is so much work, only to find when I had kids (who are quite clearly not like "them") that I was never were one of "them" at all.

    The more I interact with adult autistics, the more I've found that if I'm not on the autistic spectrum I'm very near it on the human spectrum. But I was never "allowed" to be as different as I felt. The more permission I give myself to just be me, the less exhausting I find the world to be. But then, the more I try to go back to masking to move within the world, it's even more exhausting now.

    So, I guess the reason I asked was to find if, from your perspective, my observations applied more widely than to just myself.

  2. Stephanie, I definitely believe that your stated observations apply more widely than just to yourself. Thanks for stopping by! :)

  3. Ah!
    I don't know why this post has disappeared for a time... i'm happy to see it back because it's a very good post

  4. @ Ole Ferme l'Oleil: thank you. I had taken this post down because I was unsure if it was effective and I was trying to think of a better way to arrange my ideas. Someone emailed me and asked where this post was, so I re-published it. Thank you for your reinforcement and support. :)

  5. This is a great post. You don't know how many hours of stupid nonsense I've listened to and interjected bits of the polite "that is amazing, I can tell this really interests you, you sure have a point there, amazing, wow you realy are into __________________, etc." only to be asked my opinon, and be treated rudly.

    I have learned NLP so I can control the conversation and manipulate folks, but if I just try for a normal conversation that I don't control and manipulate, I am 99% if the time treated poorly. No pro quo for my quid if you get my drift.

  6. Elesia, thank you for sharing this. Both of my sons have AS and as Stephanie mentioned above I have always felt a little out of sync from the rest of the world. I have been seeing a counselor and trying to figure out a way to "fit-in" with the rest of the world for awhile but what you wrote there just made it feel like a ton of weight had been lifted, like someone finally understands. I am so glad that I have had the chance to meet you and see this post. Please leave this one up I would love to share it with others if you don't mind

  7. Greetings and salutations, Michael! I'm glad to have you as an Aspitude reader. I enjoy working with you too (thank you for your dedication to AASPIRE). It makes me feel good to know something I wrote has contributed to lifting a weight from your shoulders. All my best to you and yours. Kind regards!

  8. Elesia,

    Wow! This is a great post. Please leave it up. You speak for a great many of us.

  9. Yup, it's a great post. Describes exactly what it feels like to be an outsider in this world.

  10. Glad to *see* you, Clay. All my best!