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My own "can't help the won't"
  • Lixina
    Posts: 289
    I'm a 16 year old autistic homeschooling student. Recently I was realizing how some of my traits are similar to demand avoidance.

    Firstly, when someone asks me to do something, three things can occur:

    a) I might be willing to do it right away

    b) I might try to put it off

    c) I might refuse

    b) eventually leads to either forgetting about it, eventually doing it, or c). With c), I start out trying to get someone else to do it or change the nature of the task so it's something I'd be more willing to do. For example I might be asked to take a bath, and ask if we could go swimming instead.
    If I can't reach a satisfactory agreement then, usually the emotional tone will rise, and I'll get stuck in refusing and be only minimally able to compromise. I start having trouble thinking properly. I get this feeling somewhat of "watching myself", like I'm playing a computer game and not really in complete control over what I do. It's all within a limited set of options. I have various emotional rules I can't break, the most important of which is not giving in, but there's also things about not expressing plainly how I feel.
    At this point, I find myself thinking "not this again". When I was in school (which is where this started) I'd think ahead to being sent home with a mixture of dread and relief, because my parents would be disappointed but it would be over. I'd tell myself "they can't kill me", meaning that despite my welling terror I knew I'd survive this.
    It usually either results in screaming, crying, running away or occasionally trying to gentkly hurt someone, meanwhile begging my parents to "listen to me" while being unable to clearly express what's going on, or I suddenly "snap" and switch to either self-hate and start self-injuring and talking about how horrible I am, or dissociate and end up barely able to move, barely able to speak, very withdrawn and so forth.
    In my case, I think a big part of this is psychological problems. As a preschooler, my cousins would pressure me into doing sexual things with them by threatening horrific consequences like my beloved cats hating me (they also threatened this if I told) and I'd give in. When my parents figured out what was going on and cut contact between me and them, I probably vowed to myself never to let that happen again.
    I have little memory of this period, most of this is my best guess from fragmented flashback memories and observation of my emotional reactions. I know when I changed schools the first time I made a similar vow to get along better with my teachers, as the first school I went to I was constantly getting sent home.
    Anyway, when it stopped I was in kindergarten. My kindergarten teacher was great, but my later teachers were trying to force me to act normal, when my very way of thinking is far from normal. I rebelled and fought to keep all sorts of odd behaviors, such as playing with twist tyes. Because this was a Catholic school, I became an atheist at 8 years old. Anyway, the pattern I described above formed in this school. I learnt that, however miserable those fights were, eventually I'd get sent home and it would be over. Regarding that, my teachers actually asked my parents to treat me worse at home so I'd prefer school. If home was bad enough for me to prefer school, then I'd be getting abused fairly badly, like David Peltzer, author of A Child Called It, who liked school because then he wasn't with his mother and there was food there he could steal.
    Another thing is, aside from demand avoidance, here's what is and isn't true of me compared to the diagnostic criteria:

    As a baby, I was neither passive nor like the description of autistics. Instead, I acted like a gifted baby, energetic, cheerful, extremely curious, long attention span and precociousness. For example, at 18 months I played with a shape sorter obsessively until I figured out not only how to fit the shapes in, but also pull them out (without opening it, which you were supposed to do).

    I knew I was a child, but also knew I was different, and therefore should act different. With my second and third schools, from 10-12, I learnt to avoid kids my age. I have three interaction patterns - child-centered play, with a little kid, avoiding interaction, with kids 10 years or older, and chattering about my interests, with adults. However, I can put up a normal act for a brief time, but it's so tiring it doesn't really counbt as a true interaction style.

    I have emotional flashbacks resulting in sudden mood swings out of proportion with what's going on (see above for an example). I'm not impulsive unless I'm near my breaking point in terms of stress, at which point I'll do things like impulsively decide to run away from home. When I'm upset, I feel powerless, and to counter that seek control, if things are going along fine I'm OK with others being in control.

    I do a lot of pretend, less so now than before. When walking along somewhere I mentally turn into some invented character, pretending to be just like everyone else. In my first school I used to pretend to be a dog or a cat, because no one tried to force them to conform. They were allowed to be themselves. I also played with twist tyes, making them into little people and animals and acting out stories with them. I remember some adult at my first school getting mad at me because I said I was the God of my twist tye people. I also do intense imagining in my head, often talking to myself as I do, describing and visualizing some scene in detail. Indirectness either annoys or confuses me, depending on whether I know what they want or not.

    I was advanced in early language development, not so much in terms of when I started but that my vocabulary has always been bigger than most kids my age, since I was 2 or so I think. I have normal eye contact, I think. I can, if I make a deliberate effort, do give-and-take style conversation with one person, but with more than one I fade out or dominate the conversation, and if I trust someone to accept me as myself I tend to dominate the conversation. I like to echo favorite songs and The Hitchhiker's Guide to the Galaxy, more so when I was younger. It helps when I'm upset. I sometimes repeat myself over and over if I like the sound of the words or I'm overwhelmed and don't feel listened to - eg "stop it, stop it, stop it, stop it" repeated endlessly during one meltdown.

    I am obsessed with disability-related subjects, especially neurological, especially two things - researching rare syndromes and disability rights activism. My obsessions have varied, including animals, the jungle, environmentalism, the book series Animorphs, drugs, poverty, famine, war, languages, especially invented languages and dying languages, and black holes.

    I'm clumsy, I crawled at the usual age, and I don't have episodic dyscontrol.

    Ettina
  • Thanks for giving us an insight into your thoughs and life Ettina :)

    I can relate to the first part where you describe how you might act if someone makes a demand of you, and I believe it is very similar to how my son thinks and behaves (although obviously I am not experiencing it only observing so can only guess!).

    Hope that you continue to contribute to the forum, its interesting to read from someone else's perspective as there are many forum contributors who are parents,but not so many professionals, or people who have an autistic spectrum disorder thamselves.
    Take care
    Debbie
  • mark103
    Posts: 11
    Hi, and thanks for the insights. I see resemblances to my son.

    My 4 year old son has an Aspie diagnosis, with frequent (but not constant) demand avoidance (not an official diagnosis in the US). He also has a lot of what you call "exposure anxiety." He won't talk about his feelings or what happened at school, and throws tantrums when we ask.

    He was a happy and curious baby, with certain autistic signs (interest in wheels, first words came at 12 mos, then disappeared for 3 mos, etc.). He has an enormous vocabulary, and very sophisticated language, and good reasoning abilities. We have good conversations (yesterday it was about "sod houses"). He has a great sense of humor, but is most amused by other children's misbehavior, unfortunately. He's also interested in what people "know" and "don't know." His main interests are anything stringlike or straplike, but he has trouble taking that interest to the next level (eg: he likes guitar strings and straps, but has no interest in playing guitar, listening to guitar music, or pretending to be in a band). He avoids children his age but has had some nice interactions with his 2 year old brother, and loves interacting with adults. He is very very distractable, which seems to be his biggest problem in the preschool setting. We successfully corrected a lot of his at-home misbehavior by giving him time-outs in his room, and by taking away favorite objects (strings, straps) for a short period. He responds to threats about these punishments. He is more prone to misbehave at school.

    I have some questions for you:

    1. What is the best way, in your view, to overcome demand avoidance?
    2. What is the best way, in your view, to overcome exposure anxiety?
    3. What is the best way, in your view, to build on and broaden our son's interests?
    4. Any personal advice about distractability and misbehavior?

    Thanks,
    Mark
  • mark103
    Posts: 11
    I neglected to add that my son also does a lot of role play, all day. At 2, he insisted on being called by another child's name. Following that, he pretended to be various Wiggles, and a baby (in imitation of his little brother). He stopped role playing for a while, and now is a superhero, "Food Boy." Occasionally, he is a cowboy. Both of these roles are based on characters from the Wiggles' Cold Spaghetti Western.
  • Lixina
    Posts: 289

    I have some questions for you:

    1. What is the best way, in your view, to overcome demand avoidance?
    2. What is the best way, in your view, to overcome exposure anxiety?
    3. What is the best way, in your view, to build on and broaden our son's interests?
    4. Any personal advice about distractability and misbehavior?



    It really depends on the person. For me, since my demand avoidance and exposure anxiety are only there when I'm very upset, dropping the issue and just trying to calm me down is something we're planning to try.
    I personally don't see why you'd want to broaden someone's interests. I like having intense narrow interests. There is nothing inherently better about broader interests, but rather good and bad point for both broad and narrow interests. Most of the successful autistic people I've heard of turned their narrow interests into a career. That's what I plan to do, by going into medicine.
    In terms of misbehavior, I have two main views: firstly, remember that odd behavior isn't necessarily a problem, for example if a kid is flicking their fingers in front of their face. If they're being treated badly because of it, that doesn't make it a problem. That means whoever is treating them badly is the one with the problem.
    If it is a problem, it's important to try to understand why they're doing it. Often understanding the cause helps you know how to deal with it. For example, if a kid is tantrumming because they're overwhelmed, the solution is quite different from if they're tantrumming because they want some more candy. For the first, you need to help them calm down and also learn what overwhelms them and try to minimise it, for the second you must stay firm. Of course, there can be multiple causes, I know one kid who was overwhelmed in the store and asked for some candy and his mother refused and he had a meltdown because along with the stress of being overwhelmed, he couldn't cope with the added stress of frustration from not getting what he wanted. In which case you'd do a combination of not giving in and giving them candy as well as removing them from the situation and helping them calm down.
    In terms of distractibility, I don't have any personal experience with that. I am less distractible than most people. I often read through the bell at school, and vaguely noticed that kids were walking past me. But if a kid is distractible, that could be inability to creen out background noise or whatever, in which case reducing stimulation helps them pay attention. Another possibility is that they're not interested. I know I have trouble paying attention to my teachers when the subject isn't interesting, and as a gifted kid with intense interests that often occurs in school. A third possibility is anxiety. When someone's anxious, they might find that they notice every little sound or whatever that might signal danger. Or in demand avoiding kids they might be deliberately trying to distract themselves and others to avoid a demand ("Johnny, clean your room." "Look at that!").
    Ettina
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