“Functioning Level” and desire for cure

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I have said for a long time that not only is the idea of a unified functioning level misleading, but that perceived ‘functioning level’ is not as far as I have seen related to whether a person wishes to become non-autistic or not.

But I was talking to another autistic person the other day, and I noticed something that runs the opposite of conventional wisdom on this matter: The people I have seen who detest their autism the most, are often (not always of course) people who can almost fake normalcy, but not quite. People who can appear almost as if they are not autistic, almost make it in the non-autistic world, almost ‘succeed’ in life.

And I think of my own life. I refuse to identify with a particular ‘functioning level’, I have been classified as low and high for reasons that had nothing to do with me and everything to do with the ones doing the classifying. I am told though that even when I attempted to look normal, I was not succeeding. I am far removed from the life that most people see as a ‘normal life’. I am easily recognizable as out of the ordinary by others (in the offline world).

While I have had struggles with self-hatred, I have had to come to terms rapidly with the reality that there is no possibility of reaching non-autistic normalcy, as a matter of survival. This seems true of many autistic people who share my views.

This is not the only factor in the cure/anti-cure debate, but I find it very interesting that one aspect seems to go opposite to how most people predict: That people closer to the outward appearance of non-autistic norms are in some respects more likely to wish to be non-autistic (even if it is just as impossible for them to do so as it is for me to do so). I doubt I am articulating this properly, but I hope my meaning will be clear.

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.

14 responses »

  1. I understand what you are saying. It is sad that these people find it so necessary to be “normal”. There are plenty of normal people that it would not be a good idea to be like. It is far more important for all of us to learn to accept ourselves for who we are, as we are. Of course, if there are things about us that we should change, and can, then we need to make these changes, but what we cannot change has to be accepted. In other words we all eventually have to accept ourselves, flaws and all and move on with our lives.

    As for a cure for autism, I doubt that that is even possible. If my understanding about autism is correct, the autistic brain is “wired” differently. I doubt we have the ability, at least in this century, to re-wire a brain. If we could re-wire autistic brains should we?

    Some people would be quick to say yes, by all means. We need to make autism and any other disorders a thing of the past. Some feel that if you cured them of their autism they would be different people, i.e. their personality would be changed. I disagree with this notion.

    Your personality is who you are at the core of your being. Your intelligence, sense of humor, likes and dislikes, attitude ect. How you experience your environment, sensory overload/sensitivity, the level of your ability to speak out loud, whether or not you stim (stare at fingers, hand flap etc) has nothing to do with your personality or who you are.

    It is my opinion that autistic people experience the environment around them differently than non-autistics do, and their experience presents them with many challenges that non-autistic people don’t have to face. But, their personalities, who they are, are just as human, valid, [whatever other word you choose], as non-autistic people.

  2. I don’t believe that autism has anything to do with personality whatsoever. It’s far deeper and more fundamental than personality. Arguments from personality in either direction hold zero interest or weight to me.

  3. Sorry. Maybe you misuderstood what I was trying to say. I am not trying to say personality has anything to do with autism. I am trying to say I don’t believe the notion that some autistics hold that if they were “cured” it would change them into someone else.

  4. I was trying to say, I don’t agree with either you, or people who believe autism is a personality trait. (Because it’s actually deeper than personality. It’s more like the difference between a cat and a dog — changing a cat into a dog would change who the cat was, even if the cat kept the same personality in the process.)

    You make autism sound like a collection of characteristics tacked onto a person as a side-note. It’s not. It’s not even a thing. It’s a word for the way certain kinds of people’s brain functions.

    All the things you describe as if they are superficial traits (stimming, not speaking, and sensory overload) are all results of a fundamental difference in perception — the way the brain thinks about information. An autistic person is not a non-autistic person with things added and taken away, but rather a kind of person whose brain is organized to think in ways that non-autistic people’s brains don’t think (and vice versa).

    I have a real problem with the idea that somehow because the way my brain works is deeper than (and therefore not the same as) personality, somehow it’s not part of me. I could undergo a total personality change in fact and being autistic would still be part of me. Changing from autistic to non-autistic is if anything far more drastic and invasive than reorganizing your personality (and my personality has changed throughout my lifetime, as a matter of fact, and I have no problem with that, I think it’s changed for the better).

    And I have a real problem with people seeking to minimize how deep being autistic goes. I could have a sex change, or a sexual orientation change, or have my entire personality change to the total opposite of how it is now, and it would be less invasive and less life-changing than making me non-autistic. You talk about pruning the twigs as if they don’t come from deep roots.

  5. Sorry,

    Again, I’m being misunderstood. I am not in anyway trying to say that autism is something as shallow as you seem to be taking it. I agree with you that is a matter of the way one’s brain is wired. In fact I menioned that in my original comment. Just in case it isn’t clear, I am NOT adovcating for a cure. I’m just trying to say that I disagree with those who think that if they were “cured” they would cease to be themselves and would become somebody else. Of course the whole debate is probably inane anyways since it’s highly unlikely that a “cure” will ever exist anyway.

  6. I tend to think that autism and personality have some vague relationship……something I don’t have words for…….a cat being changed into a dog wouldn’t even have the same personality because it would be all in terms of dog things not cat things……..

    it’s kind of confusing…..

    and I don’t want to even think about the invasiveness of changing someone from autistic to non-autistic.

    Eurgh. Nuff said.

    Ivan

  7. Dogmatic and circular thinking through and through. You postulate that autistics are fundamentally and incomprehensibly different, then you somehow “prove” that difference.

    You emit sentences as if you’ve seen how the neurons are wired in the brain with your own eyes.

    You seem to enjoy postulating things: that the brain of an autistic person is wired differently, that autistics differ from neurotypicals as cats differ from dogs, and so on.

    Not even the scientists dare to make so many clear-cut statements about autistics vs. non-autistics yet you do it as if you talk about vanilla ice cream vs. strawberry cake.

    It is amazing to me that the world knows so little yet you claim to know so much.

  8. People like Marius lack the understanding necessary to deal with their own lives, so they bring their ignorance online and become trolls… you’re doing a great job with this site, Amanda. And you’re doing a great job dealing with the trolls.

  9. Marius is a typical curebie troll, articulating nothing of substance but imagining that by claiming neurodiversity advocates know nothing that we have been impeccably impeached.

  10. I think autism affects personality deeply; after all, your outside environment affects your personality, and it’s not even directly connected to your brain! It’s not a personality type, obviously, because autistic people have all sorts of personalities; but I think it wouldn’t make sense to say that who I am now is the same person I would have been if I had been born with a typical brain. I expect that curing autism would affect the personality simply because the brain that stores the personality is now different.

    That’s the optimistic view, which could only happen if it left any personality, memories, or skills at all, since all those things were acquired and modified by someone using an Autism operating system. I think it’d be much like trying to run a Windows program on a Mac… it just wouldn’t work. You’d have to format the whole thing and start over.

  11. Gabriel & Tacitus

    If you have difficulty with understanding, this is the same thing, in simpler terms:

    Pretending there is a fundamentally different wiring in autistics versus non-autistics is nothing else than a ideological dogma without scientific backing whatsoever.

    I do not mean there isn’t any difference in the brain between the two. I say that it is not understood in what consists that difference and how pervasive it is.

    It may be a chemical inbalance, it may be an excess of neurons, it may be a deficit of neurons, it may be a defect in some particular part of the brain, or it may be the effect of the environment upon susceptible people – it is not known for sure.

    And yet, despite this confusion which dominates upon the scientific community, lots of people are so eager to postulate a lot of “truths” about what autism is.

    Beyond expressing their own experiences, their testimonies bare little value concerning the neural workings of this brain disorder.

    The name calling and the impolite considerations about how I manage my life that I receive from you guys in the stead of meaningful sentences, I shall not discuss.

  12. It is not known for sure, but much scientific evidence points to a different way of processing information, cognitive and perceptual models of autism are the norm at the moment because of stuff that I’m sure you could look up if you had the time.

    Meanwhile, I don’t see a lot wrong in people saying things based on how things seem to be from their perspectives as autistic people. As an autistic person I have long observed things about how I see the world that are different from how other peoples say they see the world. Many of those things, according to scientist friends, were later figured out by science. If autistic people had waited for science to start going in that direction before voicing our opinions on the matter, science may never have gone in that direction, or only much later than it did. So I see no harm in saying how I see autism to be, I could be wrong but just because I don’t state the evidence doesn’t mean it’s not there. I don’t go in for beliefs pre-packaged in boxes.

    If you’re looking for dogma to complain about though, you probably ought to go somewhere else. I don’t have any kind of claim on absolute truth, I just have opinions, which obviously you do to. That’s what makes it hard to talk to you, you’re assuming too much about how I form my opinions, and it’s difficult to have a conversation with a set of inaccurate assumptions.

  13. Marius, most of the people on here are not going to take it very kindly if you suggest that autism is a defect. As far as politeness is concerned, you threw the first stone.

    Autism has a history of being wildly oversimplified. It is completely reasonable to propose the opposite to many of the often ill-founded theories that have dominated the history of this diagnostic category.

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