“I know who you are and I want that person back.”

Standard

I thought I had written a blog entry about this topic already. I looked around, though, and all I could find were things that touched on the topic without making it the main point of the entry. So here, I am writing about how other people think about regression.

Before I get started, I want to point out that non-autistic people do things that, were they autistic, would probably get called regression. They lose the ability to make and discriminate certain differences in sound, an ability I never lost. They lose the ability to discriminate between non-human faces. This is considered a necessary part of their development. When autistic people lose abilities or appear to do so, the reason it gets called regression is not because we are losing abilities, but because the abilities we are (or appear to be) losing are ones that are very important to the people who get to define what is and isn’t regression.

But there’s something that happens to autistic people, when we change in certain ways.

Other people have an imaginary version of us in their head. That imaginary version of us grows along with what they have imagined up about how non-autistic people grow. That imaginary version, that ghost, grows right alongside the autistic child. But it is a ghost, and it is imaginary, it is not a real person.

I have undergone two major periods of drastic change in my life, that most people would label regression. I believe those periods to be not only not what people thought they were, but important and essential periods of growth. I was growing forwards, not backwards. But nobody could see the trajectory.

The result of this is that most people had formed ghost-images of who they thought I was and would become, in their heads. Some of them loved these ghosts with all their hearts. When they talked about wanting the real person back, they were talking about wanting me to mirror the ghosts.

But I am not a ghost. I am a flesh and blood human being. My growth does not change just because some of the people that know me have ghosts in their heads.

Many people experience this phenomenon, to a degree, when they merely make decisions that are different from what their loved ones want. Imagine for a moment that it’s not a decision, it’s your entire brain shifting around, focusing on some things that a lot of people find unimportant or bad, failing to focus on some things that a lot of people find important or good. Imagine that the things it is focusing on are exactly what you need to be focusing on. You are becoming the sort of person you need to be.

Then someone says, “I want the old you back. I want the real you back.”

Now certainly who I really was in the worst of the professional days was not who the professionals saw me as. There was a lot that people did not see about me. But who I really was was also not the ghost in my loved ones’ minds.

“I want the real you back” prompts the questions, “Do you know me? Would you love me if you found out this is the real me? Aren’t you supposed to love who I am, not who you imagine?”

Before anyone lashes out at me about that, those are just the natural sorts of thoughts that will flash through the head of many people whose loved ones are trying their best to rescue them from being who they are. Whether you do the things that frequently create those thoughts is entirely up to you.

By the way, this is even true of changes that are traditionally viewed as very negative. I have known of many people who, after brain damage, have all their friends say they want them to be the person they were before the brain damage. It doesn’t happen. It’s not real. It hurts them. It’s not that they wanted to get knocked on the head, it’s that who they are now happens to be a person who got knocked on the head, not the imaginary person that didn’t.

I happen to view the changes that have happened in my life as, mostly, different than getting knocked on the head. I would do them all over the same way, with one exception: I would have rather the people around me had not spent so much time referring to “progress” when I became more as they wanted, and “backsliding” or “regression” when I became less as they wanted, I would have rather not been set the impossible task of being someone I could never be, I would have rather never heard “I’m seeing a bit of the old Amanda” or “I want the old Amanda back”.

That can’t change. I don’t want apologies or discussions on the topic from people who were there at the time for me. It’s done. I’d rather not think about it, frankly. But I am writing this for the people who have the power to change that for their loved ones, right now, or who will in the future. That, rather than silly attempts to change the past, is what I’m after.

Also try to remember that some things you think you see in autistic people aren’t going to be true. Absence of certain behavior does not always mean absence of a loving nature, absence of understanding of certain things, etc. (I still get regularly accused of heartlessness, nothing could be further from the truth.) And what you view as your ordinary child being missing and stolen… no.

Now, after writing this, I see that I have written a few things about this on my other blog.

See:

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.

12 responses »

  1. I think this has less to do with the actual or illusory nature of ghosts per se than with the fact that most ‘normal’ people seem to be made uncomfortable at the idea that their ability to perceive another person’s true nature, character, and abilities has been inadequate, and some insist on attempting to warp the reality in front of them (i.e. the person) in order to placate their disturbed sensibilities, while denying to themselves that that’s what they’re doing.

    I’ve certainly run into variants of this in other situations, which I’ve discussed briefly on my webpage– the business about “what happened to my friend/the person I know?” They *insist* upon believing that a) the ‘friend’ they knew was an actual person, or the true essence of one, and not just a constructed facade; and that b) ‘that person’ is still ‘in there somewhere.’

    And often it’s the people who believe themselves to be *most* familiar with you who will try this. Family members often have an abiding desire to think that no one knows you better than they do– including yourself– and that, moreover, they need to protect you from any influence that would ‘confuse you’ as to who you ‘really were’ (tell a truth they didn’t want to hear). I suspect that if I had gotten my Disabled Student Services counselor to write an evaluation of me, and shown it to either of my parents (if my father were still alive, anyway), they would probably have sputtered and insisted that she was mistaken, that my report had been mixed up with another person’s, that the tests were wrong. Because they “knew” their “real daughter.” And they “knew” that this wasn’t her. And my mother is still vaguely refusing to acknowledge my relationship, even when it’s basically spelled out for her, because she “knows” her daughter is not gay. Therefore, any evidence to the contrary can be rationalized away as youthful rebellion, dalliance with a new identity, or having been led astray by someone who took advantage of me.

    -Julian^Amorpha

  2. And often it’s the people who believe themselves to be *most* familiar with you who will try this.

    I’ve noticed that. And I would not be surprised, myself, if my parents or brothers didn’t understand my recent test results either. I’m pretty sure we’re all operating not only under different versions of me, but different versions of what “disabled” means. (And if any of my relatives do read this, I’m not trying to slam you by saying this.)

  3. One could claim that toddlers have a “behavioral regression” when they start saying “no!” all the time. “I want that biddable 1 year old back.” Or when they develop stranger/separation anxiety. “I want that friendly 6 month old back.”
    I think I’ll include this sort of thing in my story. I’m writing a book and one of the characters, Vgos, is an NT from a land of autistic people. Her mother views her as having regressed at various points when she had the usual stages of NT development.

  4. My mother said to me: you seem to be getting more and more autistic!
    She says she doesn’t recognose me anymore and wants the ”real me” back.
    I don’t know how to deal with this kind of remarks and questions. It feels like she is blaming me for something I can’t help.

    I think by myself: i seem to be more and more myself.
    For the first time in years, I recognise myself, because my behaviour is more streamlined and more from within and more ‘me’ compaired to my neurological style, which is made up by autism etc.
    When being myself means being more autistic, means in fact: being more disabled, I don’t know what to do.

    When should I be ashamed of regression?
    And what if regression means that I am being/becoming more myself?

  5. This is altogether too true. Another frustrating thing is when people start singing the praises of some psychiatric medication they’ve put their five-year-old on in terms of “It’s given me my real daughter back.” Laaa! *headdesk*

    Astraea^Jay

  6. NT even do this to other NTs. How many fathers have forced their non-athletic sons to play sports because ‘you need to learn to be a real man’? I have a mix of princesses and rough-and tumble girls, and I would never try to force one to be like the other.

  7. In “CAN’s Modern Changeling Tales”, the comparison to Village of the Damned is interesting. The children in that story were hyperintelligent, devoid of emotion and behaved like miniature adults. “Asperger’s”, anyone?

    Wyndham, who wrote the book Midwich Cuckoos on which the original 1960 film was based, may have gone to school with some autistic kids and based it partly on that. Also the idea of a new race of blond superbeings who might erase those they deemed inferior was very much in the public mind when he was writing, right after WWII.

    CAN used the trope and played the gut-level terror of every parent faced with the unexpected. Especially a child who appears to be smarter than them. It’s so “unchildlike”! That’s got to elicit a couple gadzillion in contributions right there.

    Underneath it all is a fact making it even more interesting. The Midwich kids were not changelings. They were the offspring of human mothers by alien fathers. They did not replace real children: they were real children.

  8. There’s actually two versions of “changeling”-type stories: One is the ones in which something non-human (demon, fairy, enchanted block of wood, whatever) is exchanged for something human. Another is in which a human mother is impregnated by the Devil.

    The interesting thing to me was that CAN mixed the two changeling metaphors. They started out with “It’s like [kind of changeling #2],” then ended with “Because it seems like [kind of changeling #1].”

  9. I’m a parent of an Aspie child, and I’ve held the perception that my child somehow froze in time and in many ways changed, became someone else. I have also come to theorize over time that part of the problem was with my own perception and expectation – reading way too much into the things he did as a baby.

    I think you wrote a beautiful article, and one parents everywhere should read. We need our children to articulate their experience, and it is fantastic that in todays world this is being done. We parents have so much to learn and understand …

    Thank you.

  10. Hey, Amanda — any way to get a hold of those other “changeling” entries you’ve written? The links you provided aren’t available anymore . . .

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