Whose Planet Is It Anyway?

Tuesday, January 09, 2007

The Freedom to Make Mistakes

Some parents now are being advised, by professionals and Internet support groups, that the best course of action with an autistic teenager is to apply for guardianship while he or she is still a minor because the court will grant it routinely. Even if the teenager in question is responsible, well-behaved, and doing fine in school, the parents are told that a continuing guardianship is necessary because autistics are just too naïve socially to protect themselves from being cheated in the big, bad, evil world out there.

Here's a reality check: Millions of young adults rent overpriced apartments, run up credit card debt buying products they don't need, respond to slick advertisements as predictably as Pavlov's dogs, get cheated buying used cars, and make other unwise decisions. Most of them are not autistic.

Not all that long ago, parents simply took it for granted that if a teenager was naïve, he or she was going to end up learning a few useful lessons in the School of Hard Knocks. Making mistakes and learning from them was considered to be a natural part of the process of gaining life experience and wisdom, not a horrible calamity to be avoided at all costs.

Before the autism diagnosis came into common use (again, not all that long ago), parents often encouraged their socially inexperienced teens to get more involved in the world and to make more decisions, so that they would learn how to go about it. Now, however, expectations have shifted radically for those with the diagnosis. They are being redefined as perpetual children who cannot choose to work, marry, rent an apartment, or make any other adult decisions.

This is how human rights disappear.

Let's go a little farther back in history, to the days when married women could not own property or enter into contracts. These laws were based on the cultural assumption that women were naïve, childlike, and in need of protection. Similar attitudes were found among the supporters of slavery and segregation, who often argued that blacks did not need equal rights because they were not capable of making intelligent choices.

Given the fact that women and blacks were systematically excluded from almost all aspects of the business world in those days, it's likely that many of them actually were much more naïve and easily cheated than white men. But the remedy for that (as society discovered in modern times) was to provide better education and equal opportunity, not a permanent and total deprivation of civil rights.

The same holds true for autistic teenagers. There are financial education classes that teach young people how to create and live within a budget, how to handle credit prudently, how to rent an apartment, and other useful information on how to manage money. Parents can, and should, talk with their teenagers about sensible rules for making financial decisions—such as not making a major decision without taking time to research and reflect on it, not buying a used car without having a mechanic check it over first, and so forth. Achieving a basic level of financial literacy is just as important as learning the subjects taught in school.

Yes, they'll make some mistakes (just as most non-autistic teenagers will) but the consequences usually won't be serious, and they will learn from their experiences, as they do in other areas of life.

One of the freedoms most vital to our civil rights is the freedom to make mistakes.

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15 Comments:

  • I can't tell you how much I appreciate your attention to this issue. This is something my husband and I have been struggling with for awhile.

    As always, your writings are insightful and bring new light to the table.

    "Some parents now are being advised, by professionals and Internet support groups, that the best course of action with an autistic teenager is to apply for guardianship while he or she is still a minor because the court will grant it routinely."

    This isn't actually the case with us. I don't belong to any Internet support groups, and we left the advice from the "professionals" in the dust a long time ago. First when they told us that our son would never be able to communicate meaningfully, and secondly when we were advised to have him sterilized before he became an adult, because it would be "impossible to do it afterwards".

    Screw them all. He's already surpassed everything ever "expected" for him from his initial diagnosis.

    Our son has dreams for his life. He wants to find a love, he wants to be a parent, he wants to have a job. None of this is impossible for him, and we continue to try to help him reach his goals. We are doing everything humanly possible to help prepare him for an independent life.

    Although I've blogged about his autism in a limited way, because that's not what my blog is focused on, he also has some significant cognitive impairments.

    He's not like you, ABFH. Or many of the other bloggers who have autism.

    Considering guardianship isn't about keeping him from making teenage/autistic mistakes. We welcome mistakes. Some he learns from, some he doesn't seem to be capable of learning from because of his other impairments. It's simply that because of some of his other "issues", he really IS ripe for victimization.

    At this point, he hasn't "topped out" at a developmental age and continues to learn. Each day is a gift of learning. My son is the most wonderous and wonderful person to live on this planet. Of course, I might be a little biased. Ya think? LOL

    I'm not going to get into a list of our concerns here, because I'm already unforgivably hogging your comments section. I'd be more than willing to have a discourse in email or even trade guest-blogging spots with a point/counterpoint view.

    Thank you again for taking the time to address this. I can't begin to tell you enough how much I value all the topics you bring up in your blog.

    Although we may be on opposite sides of the fence on some issues, you've become a really great resource and give me a lot to think about.

    Thanks.

    By Blogger Attila The Mom, at 2:50 AM  

  • Guardianship and Vulnerability is my response to attila the mom's post.

    By Blogger ballastexistenz, at 11:51 AM  

  • I think there's a lot of danger in guardianship. It's hard for a lot of parents considering guardianship to hear, since they're nearly all nice, well-intentioned people who sincerely want what's best for their kids, and don't intend to restrict their kid's freedom any more than necessary. It's easier to think of the pitfalls of a bad guardian, and decide that you're not like that, than to think of the harm that a good one can do.

    There's something weakening in always needing permission. Even if it's routinely granted, just having to ask is a reminder that you're not really free. Every step towards independence is undercut, just that much, by the reminder that your guardian LET you move out, it's not really YOUR bank account, but one that you have use of, that you didn't get to decide whether or not to have a credit card, and that everything from holding a job to riding the bus is only because somebody who has control of your life and could refuse you everything is letting you do this. No matter how much a loving and understanding parent tries to bury it, it's still there.

    There's also the harm that comes from even a good guardian being imperfect, and making missteps and wrong decisions. It is very hard for a parent to go, "My kid's ready for sex". It's also hard to strike the right balance between being practical and sensible, and granting freedom. It may be that the kid doesn't understand the harm of buying the overpriced shoes, or it may be that you don't understand the social value of showing up in cool footwear. The tattoo may be a bad idea, or it may be something they'll treasure for years. Even the best parents make mistakes, and when you're controlling many of your kid's decisions into adulthood, they don't get to break away from your slightly mistaken idea of what you think they should be, and how they should live, and what's important for them, and settle into their own life.

    So guardianships costs, and it does some kinds of damage, always. And some of it's the kind of damage that for a parent, especially a loving, thoughtful parent that has their kids best interest in mind, is hard to entirely grasp.

    By Anonymous Anonymous, at 12:21 PM  

  • ABFH, I'm in complete agreement with you here. If my autism was known in my childhood years and my parents tried to shelter me, I know I would be worse off today. I wouldn't be independant like I am now. There were indeed some hard lessons I had to learn along the way that an NT with common sense would know better about. Actually my parents did try to shelter me because they thought I was naive and vulnerable for my age even without the knowledge of autism. Having someone tell them they needed to do this would have made things much worse.

    By Anonymous Anonymous, at 12:40 PM  

  • Attila, you don't need to apologize for hogging the comments section. (After all, I've been guilty of doing the same on your blog!)

    As to your statement that your son is not like me or many of the other neurodiversity bloggers: Parents often tell us that we don't understand their circumstances, which has the effect of shifting the scope of the discussion from human rights to individual problems, as Joel discussed in a post recently. I'll quote a little of it:

    ...we are restricted to giving our personal experience, regardless of any other credentials we might have. But at the same time, that experience is dismissed because it isn’t exactly like their kid’s. We’re not allowed to be part of the debate, no matter how valid our points are, no matter how much we argue based on logic and how little we argue based on experience. So, we’re reduced to trying to prove we’re broken enough...

    I don't believe that this was your intent when you wrote your comment, but when a parent responds to a discussion of human rights issues by saying "but my kid isn't like you," there's an implication (whether intentional or not) that some kinds of people don't need human rights as much as others, and that those who are able to talk about human rights must have had different experiences.

    When you compare your son's current situation to your impressions of my writing, that's an apples to oranges comparison because you never saw me in real life at the same age. I'm not going to get into the details of my childhood behavioral issues, but it would indeed have been possible for me to have been put in an institution or under guardianship. I was so oblivious to society's expectations, I didn't even understand that I was perceived as developmentally different until many years later. I certainly was naive and "ripe for victimization," as you put it, and in many ways I was lucky that nothing serious happened.

    I understand that you want to keep your son safe (and frankly, if I had a kid who behaved the way I did when I was a teenager, I'd have some worries, too) but as I see it, there's a much larger issue here -- when our society sees nothing wrong with urging parents to get guardianships over autistic teenagers as a routine matter, that means a person can lose his or her civil rights for no other reason than the fact of having been born into a genetic minority group. And I find that extremely disturbing.

    Your suggestion for a guest-blogging debate is interesting, but because I never was under guardianship (or perceived myself as likely to be), I look at it from a more general human rights perspective. If you're more inclined to discuss your specific concerns about your son, while I'm writing about cultural assumptions and historical patterns, that doesn't lend itself well to a point-counterpoint format.

    So... if there is anyone reading this discussion who has been under guardianship (perhaps a person with multiple disabilities?) and who feels that it was unnecessary, would you like to debate Attila in a guest post? If so, please let me know, either by e-mail or in the comments, as you prefer.

    Amanda, thanks for your article and for posting the link to it. The image of "throwing an atom bomb at an anthill" sums the issue up perfectly.

    Anon 1 & 2 — yes, in many ways, guardianship can result in a self-fulfilling prophecy of incompetence. If a young person always needs a parent's permission to make any changes in his or her life, that person is likely to lose confidence in his or her abilities and to quit trying to do anything independently.

    By Blogger abfh, at 1:56 PM  

  • "So... if there is anyone reading this discussion who has been under guardianship (perhaps a person with multiple disabilities?) and who feels that it was unnecessary, would you like to debate Attila in a guest post? If so, please let me know, either by e-mail or in the comments, as you prefer."

    Yup. Me.

    It fucking sucked, but Finnish disability services tend to be paternalistic.

    By Blogger David N. Andrews MEd (Distinction), at 3:59 PM  

  • Even the Guardian was amazed at the Services for pushing it....

    By Blogger David N. Andrews MEd (Distinction), at 4:01 PM  

  • I blogged about this also "here"

    (This is my first foray into html. if the link doesn't work, I'll have to post it again)

    By Blogger Chasmatazz, at 11:22 PM  

  • David: After giving the matter more thought, Attila has decided that she feels too conflicted to debate the issue. She'd prefer to do more reading about it.

    Chasmatazz: The link works just fine, thanks. :)

    By Blogger abfh, at 9:21 AM  

  • ABFH: "After giving the matter more thought, Attila has decided that she feels too conflicted to debate the issue. She'd prefer to do more reading about it."

    That I can understand. It took its toll on my emotionally, to be honest. This sort of issue, although glibly talked about in case conferences and other meetings, is a very emotive issue.

    Some idiots whose brains don't work properly fail to understand that.

    I think ATM understands it more already that many seem to, from my own experience.

    By Blogger David N. Andrews MEd (Distinction), at 3:17 PM  

  • David, you should post about it on your blog and put the link here. It will, of course, show up in my subscriptions over on Xanga. ;)

    By Blogger Jannalou, at 9:20 PM  

  • So here is the "Dependent Adults Act" for Alberta. I can't find a definition for what constitutes a dependent adult, but I'm not finished looking yet.

    I don't know anything about guardianship first-hand. I do know (first-hand) that if you give people the chance to look after themselves, they can flourish and grow and surprise you and everyone else - by becoming socially competent, able to hold down a job, and successful in every way the world considers important.

    By Blogger Jannalou, at 3:40 PM  

  • My parents never did a good job at guardianship even when I was a child, and they can't even manage their own affairs that well, so I doubt they could manage mine, and I DEFINITELY would not want them having guardianship over me.

    Still, I don't fit the description of someone who, having been given the chance to look after himself, flourished and grew and surprised everyone by becoming socially competent, able to hold down a job, and successful in every way the world considers important.

    I don't know what the answer is. Maybe if I had gotten a better start in life...but that sounds too much like blaming my parents.

    Charles

    By Blogger Chasmatazz, at 9:51 PM  

  • Are some aspies naive because they have been excluded from the social world consistently from early childhood? I had an elderly aspie visiting at our place during a childrens' party, and they found it quite an experience because "We never had parties when I was a child." How many generations of social isolation is that? Being stuck under the wing of parents who may have some negative aspie characteristics themselves, such as being socially isolated or total control freaks, could be a worse risk to take than being "thrown to the wolves".

    In my own personal experience, aspies sometimes find themselves "stuck with the folks" and they get so frustrated with this situation that they just pack their bags and run off and join the circus or get married or live in a tent or something else equally unwise.

    By Blogger Lili Marlene, at 3:28 AM  

  • "Are some aspies naive because they have been excluded from the social world consistently from early childhood? I had an elderly aspie visiting at our place during a childrens' party, and they found it quite an experience because "We never had parties when I was a child." How many generations of social isolation is that? Being stuck under the wing of parents who may have some negative aspie characteristics themselves, such as being socially isolated or total control freaks, could be a worse risk to take than being "thrown to the wolves"."

    I wish I'd had more social isolation. I'm very good at sensing when others are uncomfortable around me and supressing emotions, good and bad, because my way of expressing them looks weird (such as laughing when I'm nervous, or flapping and jumping when excited). But all the social interaction I got didn't help me really understand people. Learning about autism did, because I learnt that traits I'd assumed everyone had were actually autistic traits. I used to think piles of people were deliberately acting stupid because I thought I wasn't very smart, but turns out I'm gifted. The reason I thought I wasn't smart was people others told me I was stupid and I believed them. I think they honestly thought that, too.
    Good social interaction in the right amounts (not too much or too little) can be great. Social isolation is hard on NTs and less hard on autistics. And bad social interaction is far worse than isolation.

    By Blogger Ettina, at 1:48 PM  

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