Waiting on the world to change?

Every one of us has a version of the ideal world, and a corresponding appreciation of the many ways in which it doesn’t measure up to reality. We fight to change the world to better match our ideal version – we protest, propose law changes, change minds and walk the walk – but so do the people who have opposing versions of the ideal world. Politics is a version of these competing ideals at war. Politics are at play in the autism world too; we also carry around conflicting ideals and fight tooth and nail to make the world better match those ideals.

From FlyingSinger on Flickr

Around Autism Awareness Month each year (April), the details of these ideals often get shoved aside so we can try to put on a united front to make a better world for autistic people. But take a look around, does everyone embrace the puzzle piece, the “Light it up Blue campaign,” the message that autism is a growing tragedy or something beautiful and wonderful? No; I see just as much – if not more – division during Autism Awareness Month as at any other time of the year in the autism community. (And I’m OK with that diversity, I think it’s healthy and honest.)

But here’s the thing then: You can’t embrace some ideal version of what you want the world to be like for autistic people, and then simply raise your child to fit into that ideal, because there are no promises your version of the ideal world is the one that’s going to win out, or that it will win out in the next year or decade or century. For me at least, I’m not going to sacrifice my son’s future to the unknown; I’m going to help him to make his way in the world as it currently exists, whilst continuing the fight to make it my version of “something better.”

The world as it currently exists has social expectations in a variety of situations, and not meeting those expectations has a variety of consequences. Whether you want to find friendship, or love, or get a job, your chances of success – and your options to choose your own version of success and happiness – are much higher when you can figure out what is expected of you and are at least able to choose to meet those expectations. This isn’t about “conformity,” it’s about choice and freedom and removing limitations. If someone chooses to behave a certain way and say certain words, that is one thing, but if no one ever gave them the choice because no one taught them the rules or the expected behaviours, that is something entirely different.

(I’m currently reading a book written by two successful autistic adults, which has made me better realise this truth; I’ll be reviewing the book in a future post, suffice to say for now that it’s strengthened my views about what I am obligated to teach my child in terms of social rules and expectations.)

As a parent of an autistic child, you’re supposedly not meant to help your child “conform” or “fit in.” If you talk about such aspirations out loud, you are painting a target on your back. People turn your words and hopes against you, and insist what you’re trying to do is hurt or abuse or change your child in some fundamental sense. Well I call bull on that, because of choice: Because I am granting my child the ability to define himself and choose his own behaviours. I am opening doors for him; he gets to choose which one to go through. I am not fighting who he is, anymore than forced to do maths and sports and art at school was fighting who I was. Our job as parents, as teachers, is to prepare children – whatever their neurology – for the world that actually exists, not just the one we wish existed.

Our choices are hard sometimes; such as when to try to change or modify a socially inappropriate stim, that might be isolating the child or targeting them for bullies, but nevertheless serves some meaningful function for the child. But those are still choices we have to make; we weigh-up the options and decide what is in the best interests for that child in that culture, in that country, at that time. We can’t make these decisions in isolation of reality (or rather, we can, but it’s unlikely then to be genuinely in the child’s best future interests).

So no, I’m not waiting on the world to change. I look around me and I see what skills and knowledge my son needs to do well in life, and I am giving them to him, in the most loving and compassionate ways that I can. I never stop learning about him, or his autism, or autism more generally, but I also never lose sight of the fact that it is my responsibility to prepare him for reality. I’ll keep fighting to raise awareness, and acceptance, and to make the world an easier place for him to be; there’s no dichotomy there: it’s all just part of helping him towards happiness and success. And if my son’s happiness and competence is anything to go by, I must be doing something right.

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26 Responses to Waiting on the world to change?

  1. I like to think of it this way, that we are trying to explain how the world works. Here is what many people believe and do, and here is why they believe and do it.

    You bring up some excellent points. I was talking with a school psychiatrist about this. There are parts of the school day that are unnecessary and use up too many tokens so that the rest of the day is wasted in recovering. Eating lunch in the very crowded and noisy lunchroom comes to mind. His rejoinder was that perhaps they ned to know how to eat in the cafeteria. I get it, and yet he will probably not choose to in the future. And so is that a waste of energy that could be used on something else that will better serve my son in the future?

    I get that the world needs to change, I want it to change, too. I hope it changes and soon enough to benefit my son.

    • Really good point Dixie, and I think figuring out what skills will help in the future and what are just temporary or very isolated skills, is part of the puzzle. Figuring out how to eat in a crowded environment could go either way; as adults we can often avoid this situation, but sometimes it is unavoidable, so then we have to take into account (as you say) the damage that might be occurring from pushing that skill at that time. Perhaps something to pursue when the child is older and has better coping strageties.

      Thanks for your thoughtful comment.

  2. Sharon says:

    Precisely how I think about this issue. Why would I refuse to teach my autistic kid’s the same social skills I taught my NT child? I’m not an idealist, I’m a pragmatist. My kids will have more opportunity the better equipped they are to navigate the often unsympathetic world they will be going into.

  3. As ^^Sharon^^ said…our family has always tried to teach BOTH our sons how to navigate the “real” world. EXCELLENT post!!!

  4. nordling2013 says:

    In her book A different childhood (which I have translated from Swedish) my friend Iris Johansson describes the learning process she went through to learn how to fit into the “ordinary world” (her term) so well that she not only survived, but she prospered. On top of it all, the very skills she had to painfully learn in order to be able to react “normally” enabled to build an international career in communications counseling, conflict resolution and care giver mentoring. An excerpt from the book:

    …The first thing Iris did in order to adjust and become ordinary was learning to speak casually. She had seen that when ordinary people were talking with each other it was often about something different than the thoughts they had inside them. Iris was out on the town with her mother. They met an old acquaintance. Mother asked enthusiastically: “How are you doing these days?”

    The acquaintance answered: “Fine, thank you. How about yourself?”
    Mother said: “Everyone is out planting now, since it is spring.”

    Iris asked herself how you talk casually like that and wanted to learn how to do it. She tried to stop thinking and repeated to herself every word they said so it would sound exactly the same and be equally thoughtless. But she didn’t have a lot of success with it.

    She also practiced conversation starters. A good starter is: “Where are you off to?” or “Do you want come along …?” or “What do we do now?” or “How do you like …?”

    This worked much better. Because once she had spoken the starter she just had to stand there and let the other one talk.

    • That’s very interesting nordling. I’ve come to realise that being on the outside looking in, and having to actively come to understand what other people take for granted, that the autistic perspective on the rules and structures underlying social interactions can be amazingly enlightening from a non-autistic perspective too. Autistic people have to work that much harder to learn and understand the rules, and so can reach a level of understanding and appreciation of those rules that I think many non-autistic people never get close to.

      Thanks for sharing.

  5. Sheila Stone says:

    course, as one of those spectrummy adults, i have no clue how to teach those skills. I know my life didn’t straighten out until i stopped trying to be what I am not. working hard to fit in, and denying my own soul, actually led to an abusive marriage and consequent single parenthood, and to a wrong career choice, based on being employable but having little to do with my ACTUAL strengths, thus leading to several breakdowns, burnout, and my current compromise strategy of working part time without benefits. so, for an assortment of reasons, I’m teaching my daughter the exact opposite strategies that you are. To understand herself and respect herself so solidly that when something is untrue or not working for her, she finds an alternative. She lets go of what isn’t a good fit. My plan is that she will grow, unbent, into the best version of herself possible in THIS world–I agree, I’m not going to change it to work for her, any better than I could change it to work for me–but there are corners that DO work for my kind of person and I DO want to grow those corners, for all of us. Not just to benefit spectumites. To benefit ALL of us. She’s almost there now, and so far, so good.

    • I think you’re conflating “fitting in” socially, with changing who you are as a person; they are not the same. My son understands and respects himself very well, there is nothing that says you can’t learn and respect society’s social rules and expectations, AND be a fully independent and confident human being. I do not accept that division at all.

      Manners, and appropriate greetings, and appropriate interactions, are not about simple conformity, the function of those behaviours and words serves a much more important purpose of diffusing tensions and allowing an individual to become part of a larger and structured enterprise (like a work place or university) that they might otherwise not be able to be part of because they don’t know or understand the rules. Understanding the purpose of social rules isn’t about being the same as everyone else, it’s about getting along with strangers and colleagues in sometimes difficult and unpredictable situations. It provides the very predictability that autistic people frequently crave, which is one of the great ironies in this area, an irony that I only recently came to appreciate.

      I appreciate your commenting and sharing your thoughts and experiences, but I cannot say that I agree with your view about the function or importance of social rules (and that’s not simply coming from an NT perspective, since my views have very strongly being shaped by reading autistic adults perspectives).

      • SS in the Blue Ridge says:

        I don’t understand how one could “fit in” WITHOUT changing. “Fit in” to WHAT?

      • This really isn’t a brain teaser, but perhaps I’m being unclear. Fitting in with social expectations, manners, greetings, polite behaviour, considerate behaviour, etc. The behaviours that are generally accepted as marking out someone as considerate and polite in that particular society, those rules vary between cultures and countries and over time. All parents have to – should – teach their children these rules, some kids just pick them up naturally, some don’t, some refuse to, some can’t. But if they can and we don’t try to help them do so, we’re setting them up to have less choices in life. All of that does nothing to contradict who someone is, what they feel, what they love, what they think. Different behaviours are expected in public, in private, in school and in work. Those variations also leave significant room for personal differences and personal expression. Lots of people – regardless of their neurology – don’t want to meet social expectations, and that’s their choice and they can live with consequences that follow, and that’s fine, but the point is to give them that choice. That’s what I’m trying to say here: we need to empower our kids to have the choice by teaching them and helping them to understand and meet social expectations. Choosing to do so recognises the fact that we live in an imperfect world, but one where doors need not be shut to our kids. I hope that clarifies things..?

        • SS in the Blue Ridge says:

          mmm. I understand some of those rules, but I think there is a lot of variability. Where i live now, you are rude if you don’t smile and wave at everyone. Where I grew up, you are rude if you do. Smiling and waving feels fake sometimes–sometimes it feels really uncomfortable. Sometimes when I do it someone assumes I want them to touch my boobs. It’s a minefield. I do better if I smile and wave when I feel friendly and don’t smile and wave if I don’t. Sometimes people are going to think that’s rude. But it hasn’t gotten me in as much trouble as being too friendly has. Multiply that by a thousand of these rules and you might see where I am coming from. I’ll stop–this is your page.

        • Sheila Stone says:

          I posted one last comment, then will let it go & unsubscribe if i am subscribed; give others a chance to chime in. . thanks for trying to clarify–it’s all good–

          SS in the Blue Ridge

      • SS, it absolutely can be a minefield, you are so right! And it sounds like you have already found what rules work for you in the society you live, though it was through trial and error, as it sometimes is. Often being polite and “appropriate” can feel fake, no doubt about it, we all feel that way sometimes, but that’s because there are often differences between what we show and what we feel, because at times it is hurtful or cruel to wear every emotion we feel. For example, we try to smile and give our attention to the couple at a wedding, even if we are sad or miserable because of something else that has happened to us that day; it may seem fake, but it is the polite and appropriate behaviour in that situation. My aim with my son is to actively try to teach these sorts of rules and what is appropriate and when, to help avoid him having to learn everything the hard way if possible; I want to be as express and helpful as I can with him, I want to help him understand and to flourish in the society he lives in, though it won’t always be easy or make sense to him.

        I just want to thank you for persuing your point and engaging in the discussion we’ve had here; I know these issues can be emotional and bring up lots of other concerns about authenticity and what looks likes demanding conformity. I am genuine in wanting my son to be himself and love who he is, I just don’t see that as contradictory with learning and trying to engage in social expectations, but I do know that some people think it is impossible to separate the two, I’m trying to help people to see why I don’t agree with that view though. Regardless, I wish you the best, and you’re welcome to come bak and comment anytime.

        • Sheila Stone says:

          see, I’d just skip the wedding if I couldn’t feel like smiling and focusing on the couple because of something that happened earlier in the day. I can only handle so much social interaction, so it may not be worth it. I also am uncomfortable and disgusted by being around drunk people. This way, I am self respectful and genuine. I have NO friends at all who would be upset if I didn’t make it to their wedding for a reason like this at this point because I have weeded out the friends who wouldn’t be able to understand this. I often find that the people who are having weddings only want me there if I can be smiley and happy for them. Often, because I love them, I genuinely feel that way, so I go! If not, I can always find another way to celebrate their official union–a heartfelt card or gift, even not at the “proper” time, is always received well, if I wait until i really feel it.

      • See, you know that it would be inappropriate to go to a wedding and be crying and miserable, that’s the rule (for example), but what you do about that is your choice: Do you choose to go and smile along (which is fine), or choose not to go because you know you couldn’t manage the smile (which is OK too); the point is that you know the “rule” and can make the choice. It’s when people don’t know or don’t care about the rules that people can become isolated or alienated or deeply misunderstood. Learning and following social expectations can be hard and annoying, but I believe it is nevertheless a vital part of a child’s education.

        • Sheila Stone says:

          well, not because it’s a social expectation, but because it would make my friends sad and they shouldn’t be sad on their wedding.

          On Sun, Mar 31, 2013 at 10:52 PM, Autism & Oughtisms wrote:

          > ** > Autism and Oughtisms commented: “See, you know that it would be > inappropriate to go to a wedding and be crying and miserable, that’s the > rule (for example), but what you do about that is your choice: Do you > choose to go and smile along (which is fine), or choose not to go because > you kno” >

      • Yes, but wouldn’t you do the same if it wasn’t a friend’s wedding? Let’s say you were going with a date who was the invited person, or you were a distant relative who hardly knew them but had been invited? Social rules are often about respecting people’s feelings, even when they’re total strangers. So even though you may choose to act a particular way under a specific motivation (personal and real emotional caring), the underlying rule represents respecting and caring about people in society more generally. Like a short-cut to figuring out what to do when you’re not sure, like all rules are, just these happen to be in the social realm.

        • Sheila Stone says:

          ah HAH! no, I would not go unless I had a real reason to be there. If I went as someone’s date to the wedding of someone I personally didn’t know…no, that has never happened, actually. and never, ever, as a distant relative. I can’t imagine why I would go to the wedding of someone I did not already care about. I haven’t had to do this since I became able to drive myself.

          Fortunately, I never get invited to weddings any more of people I don’t know. If I did, I would RSVP a no. And I’m not finding my life the poorer for it, either! Or theirs! You can’t do everything, you gotta choose priorities, right?

          There are situations I am part of that I don’t see any personal benefit to–for example, when someone is sick or in trouble and I am helping out in some way. But to me, a wedding is a very optional thing. By the way, I also don’t understand why people spend so much money on them. Enough to buy a HOUSE! An outfit you will wear ONCE costing as much as a used CAR or orthodontia for a kid for a year. maybe you could help me understand that while you are at it. it seems very, well, wrong, superficial, and kind of, …bad.

          The weddings I have been invited to since turning over this leaf of being honest about my ownself, have been small and quiet and have been about the celebration of the life uniting of two people forever, hopefully. These events are meaningful and, yes, fun. and I love to be present for my friends for these ceremonies!

          But witnessing this and celebrating it doesn’t mean anything if you don’t know the people! (I mean, DOES it? if so, enlighten me).

          I have also been to a bunch of weddings as a musician, and gotten PAID for it, and I get that they are fun for a lot of people, but a large gathering of people isn’t FUN for me. It’s more of a job. (Playing in a band and having people dance to the music is fun, though!).

          I assume people are smiling because they are having a good time. If they weren’t having a good time I think they should leave. I would. It is news to me now that people are smiling for any other reason and I DO think it’s lying.

      • I’m finding this a really interesting discussion, because it perfectly illustrates something I’ve been reading about a lot lately; that autistic people are often erroneously (by social standards) brought up to over-empathise the importance of honesty, in the face of the huge number of situations where it is more considerate and kinder to engage in white lies or avoidance of confrontational honesty, because there are many other values at play in life quite apart from (and above) the value of honesty simpliciter. I can’t honestly do the discussion justice until I finish the book I am on, but I do promise to do a post on it when it’s finished and would love to hear your thoughts on it when it’s done.

        As for the value of weddings? The simple answer is personal values. For some people they value the symbolism and gathering of a wedding very highly, and if they have the disposable income there’s absolutely no reason they shouldn’t engage in such spending, the same way other people spend ridiculous amounts on houses or pets or travel. My wedding was a simple and inexpensive affair, because that’s what we wanted and could afford. As for why you would attend a wedding of someone you didn’t know well, if you are invited as company for your partner who was invited as a friend, then surely that’s good enough reason to go, or maybe the wedding is a once in a lifetime excuse to get the entire extended family together for the first time ever, and I think that’s a lovely idea too. It’s not always about the person who was invited, often it’s about the person who did the inviting and who else is going to be there, weddings are complex events at the best of times!

        • Sheila Stone says:

          actually, it’s deeper than all that. Because I can’t tell when people really mean it and when they are just being polite. so if you come to my wedding and smile, but it’s not because you really feel like smiling, I will actually feel angry and betrayed. If you don’t feel like smiling, don’t. I will be fine with that at my wedding (or party) because I am not inviting faces, I’m inviting souls.

          But don’t lie to me, even in little ways. It feels like stealing. It feels like the truth is being stolen from me, and that makes me feel very unsafe and very angry.

          I think in your social world, people actually KNOW on some level that you are just being “nice” because you are honoring the (presumed mutual, but that’s another set of thoughts, because THAT isn’t always true, the social structure being maintained very often has a covert power structure behind it) goal of keeping some social structure standing.

          But in MY world, I DON’T Know that on any level. I don’t know that you won’t hurt me, even though YOU think you are being nice. I truly don’t have degrees of honesty. It’s just honest or not honest. There’s not “a little” dishonest. The only reason I lie is because of fear. I lie to my ex, when I tell him that my daughter is sick. This is because she tells me she is afraid to see him (he’s an addict) and if I tell him the truth, he gets rageful. Since I don’t WANT a real relationship with him, I don’t respect him enough to tell him the truth. But I do this because I truly don’t know what else to do. And because of this, he doesn’t HAVE a frequent relationship with his daughter.

          I DON’T feel like white lies are kinder. To me, they are much worse. They are dangerous, because if i don’t know what you are thinking, I can’t trust you not to hurt me on purpose. Which a lot of autistics grow up with a lot of this kind of BS and it’s actually a form of bullying. I can’t tell you how many times in the past I was told to just “take a joke” and it turned out that JOKE was actually a hurtful put down that the person was USING to GAIN CONTROL over me. Really. Where, once I learned to tune in to my body, I could FEEL the hurt, and when I got strong enough to call people out on it, it was obvious they actually WERE trying to either put me down or themselves up at my expense.

          Just be honest, if you don’t like me (or whatever), just go away and be with people you DO like. And leave me the same! Because my life is FINE without the white lies. To me, they are a POWER move. They are representative of someone’s attempt to control my opinion of them, or to not “rock the boat”. I’m LIKING my life the way it is, which is, free of people who are trying to be superficially friendly! This way I have REAL friends that I can deeply TRUST and that KNOW me for who I really am. I have meaningful work that I’m good at, even though it’s tiring. I have activities I actually enjoy because I have weeded out the ones I thought I SHOULD enjoy, or that the kind of person I was trying to present myself as (and be) does, and ONLY do the things I find satisfying now.

          gnite for now!

          But I like honesty over stability. It’s the only way we are going to make changes that are actually NECESSARY. The only time I could see white lies being correct would be if i were totally uninterested in going deeper than the most surface level of interaction. Since I am never interested in that, what they communicate when someone uses them with me is that they are controlling the depth of the interaction due to their OWN discomfort. So, SOMEONE is going to be uncomfortable, either the liars or the truth tellers.

          . The little social lies perpetuate a stasis, which is comfortable for SOME, but not for the disenfranchised of whatever system is being maintained. I actually think everyone’s would be better without the white lies. I think we might not have the ecological problems we have now, if people were more honest with others. Those little white lies are TROUBLE, man! Some of the social structures they perpetuate need to come DOWN! The reason to maintain a sick social structure which does not support honesty is because of fear. Right?

          On Mon, Apr 1, 2013 at 12:49 AM, Autism & Oughtisms wrote:

          > ** > Autism and Oughtisms commented: “I’m finding this a really interesting > discussion, because it perfectly illustrates something I’ve been reading > about a lot lately; that autistic people are often erroneously (by social > standards) brought up to over-empathise the importance of honesty, in ” >

        • Sheila Stone says:

          and getting the entire extended family together for a photo op, if otherwise they never get together, just doesn’t seem like a good reason to do something.

      • Part of the problem here is we don’t have to tell everyone how we really feel, often strangers and friends really don’t need to know that you hate their hairstyle or think their party was horrible or that the cake they spend two hours cooking and decorating was gag-worthy, when they ask for your opinion. White lies are about recognising that your own feelings and honesty are not always more important than other people’s happiness, and that not everyone needs to hear what you think and feel (context matters). If white lies are never OK, then what about tactful silence, is that a bad lie too? There are kind ways and cruel ways to say the same thing. Life is not black and white, life would be much simpler if it was, but it wouldn’t necessarily be a better or kinder world. Some teasing is cruel, some teasing is what friends do together, it’s a gentle form of play together, there is nothing hostile or inferior about it, it’s just confusing for some. The key is figuring out when it’s ill-meant and when it’s a form of play, not declaring it all nasty and immoral, because it simply isn’t, and neither are white lies.

        I do understand what you’re saying, and in some ways it’s admirable. But as I said in the post, we can’t wish away the reality of the world, so we have to teach our kids how to cope with and respond to these social challenges that nevertheless do exist.

        • Sheila Stone says:

          silence is always an option. but if you have to be silent too often with friends, because there are too many things about them you don’t like, it’s time to re-evaluate the friendship. I also disagree about teasing. You are talking about a softwar in which both parties agree to participate. if both parties aren’t agreeing to be in it, it’s not a game.

          There’s nothing “admirable” in my stance–it’s just how I need to operate. If others don’t want to operate this way, fine–just leave me out of it. Because there is a lot of room out here outside the box. In fact, it’s a GREAT place, a lot of the time! And when it’s not, it’s tough, I do agree with that…

          There is plenty of room in the world for all styles, in my opinion. In fact, I believe that diversity of style is what is going to save us as a species. Like I said, once I stopped trying to fit in, I became much more GENUINELY happy, because I was making real choices to support my real self–and I truly believe, largely BECAUSE of that, more of a blessing to the real world, too. Anyway, more energy to contribute my unique talents and abilities, which, as you can plainly see, include the verbal and iconoclastic ones.

          http://www.rightbrainplanner.com/wild-geese-by-mary-oliver/

          I might not be preparing my daughter to be part of the “real world” that you are part of! I CAN’T! I wish she could have the choices your son will have. I also wish your son to have the choices that mine does. She knows some amazing and wonderfully brilliant and kind people who love her as she IS, mutism, stimming, and all. She’s even employed by people who love her.

          On Mon, Apr 1, 2013 at 1:27 AM, Autism & Oughtisms wrote:

          > ** > Autism and Oughtisms commented: “Part of the problem here is we don’t > have to tell everyone how we really feel, often strangers and friends > really don’t need to know that you hate their hairstyle or think their > party was horrible or that the cake they spend two hours cooking as > decoratin”

      • I have to do what’s best for my son, which means giving him options and skills and knowledge that will help him navigate the world he has been born into. That’s what this all comes down to. Autistic people can be taught social rules, even the difficult ones, it just takes longer, has to be done expressly, and requires lots of purposeful practice and experience. Teaching social rules is not the same as teaching emotional relatedness, confusing the two together often makes a possible task look impossible and complicates the teaching, I do think there are better ways to teach social skills than are often employed with our kids, and I intend to (and do) use them to the best of my ability for my son. Regardless, it is important to try, with full recognition of the purpose and importance and difficulty of the task.

        I want to mention something else. I often receive and read comments that attack autistic and Aspergers individuals for being intentionally rude individuals who have “nothing wrong with them,” people genuinely think they’re just using an excuse to be rude. Yes, those people are wrong and don’t understand autism, but the rudeness they see is isolating and alienating those autistic people, costing them jobs, friends and life opportunities. I can’t make people like that – those who misunderstand autism and my son – disappear, though I can and do try to educate them. But I can help prepare my son to deal with those expectations and judgements about what is rude, and try to avoid the consequences for him. It matters, whether we think it should or not, it does matter.

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