Asperger's / Autism Toolbox
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Helpful Help
A Post by Monkey Plierson January 25, 2013
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Asperger's / Autism ToolboxH EO M Helpful HelpA Post by Monkey Plierson January 25, 2013 View Blog Listings |
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The earth is full of people who would like to save the world. But what does this mean? What's become apparent to me is that a lot of them would like to fix the world. In other words, it's broken. If we repair that brokenness, then everything will run perfectly. Our community is not monolithic. No one's is. It's been said over and over about (and by) autistics (not just the Aspies among us) that, if you've met one of us, you've met one. One of the things this means is that we don't all share the same opinion about anything. This includes the matter of a cure for autism. While many of us prefer to be accepted and accommodated as we are, I respect those who say they would embrace a cure. They have their reasons, which I find understandable, even if I don't feel as they do. However, there's something that should remain the same in any approach to autism, regardless of whether or not a given individual seeks a cure. And that is the basic meaning of the concept of "help". Lots of people who like to help others are "fixers". They apply the model of brokenness to guide them in their formulation and application of ideas and methods. Anything that interferes with what they perceive as smooth and predictable operation must be flawed and is therefore in need of correction. By their way of thinking, it's only a matter of conjuring up the right solution and dropping it into place. It's an attitude that lends itself far too easily to believing that, if the problem doesn't go away, the situation (or the person having the problem) is simply being stubborn. Unfortunately, this represents a failure to accept that wanting something to help doesn't always mean that it will - or that it should. It's sad to say, but we can easily mean well without succeeding in doing any good. I've been guilty of this myself, so I'm not just pointing fingers here. The thing about real help is that it should actually be helpful. To that end, it shouldn't be pressed on unready or unwilling parties, whose reasons may be legitimate - or simply their own business. That means meeting the people you want to help where they are, when they are both able and willing, and gaining their input as much as possible, in order to address their particular concerns in a way they find relevant, useful, and appropriate. Effective help means looking to alleviate pain and difficulty whenever possible, and to the extent possible, while also recognizing strengths and encouraging achievement. But what this involves for each person will be different, because we're not all alike. So, what it doesn't mean is expecting either individuals or their outcomes to be uniform to any degree. In other words, someone who wants to help must be willing to flex and to listen, as well as to honor a person's unique development, rather than refusing to allow anything other than a single, prescribed result. This type of thinking doesn't exactly exclude people who really do want a cure, but it probably will eventually affect the notion of just what it is that seems to need curing. And, while the shift involves more of an alteration of philosophical approach than of specifics in treatment, the treatment itself, at least in some cases, will also be affected - likely quite dramatically. What I'm talking about is the abandoning of the idea that autism can be seen as some kind of entity that can one day be excised whole, like a tumor, while leaving its host intact. Lots of adult autistics (though not all) who were diagnosed as children are angry. Many have openly demanded to be heard concerning the nature of treatment for autism, having been subjected to it themselves while growing up. Being a late-diagnosed adult, I can't speak for them, but I can support their efforts to make their feelings and opinions known. There are also those among us who object strenuously to the creation of the perception that all of us reject the development of a cure. At the very least, in the spirit of wanting no autistic to be silenced, I can advocate for their full inclusion in the discourse. After all, we can't sort anything out if we don't know why people think and feel the way they do about a given subject, including those with whom we share the greatest differences of opinion. But even before that, we can't claim to have freedom of speech in a free society if we don't so much as allow people to tell the truth about themselves and their own lives and experiences. If, for some, telling that truth includes expressing desire for a cure, then so be it. None of this debate over accommodation versus cure, it should be noted, precludes dealing with the simple fact that adults on the spectrum exist. Whether you believe in one day finding a cure or not, we are not cured now. In light of that state of affairs, accommodation and acceptance are what's left, like it or not. We're not going away. And there will be more of us, for as long as autistic children continue to grow up. So, about that helpful help... Given that we can't, we won't, be ignored any longer, and given all we have to offer out of the gifts that come with the autism package, doesn't it make sense to join us in trying to meet our varied needs in ways that are relevant, useful, and appropriate? Why shut us out? The help that improves the life of an autistic adult today might give a strong clue as to how to help an autistic child tomorrow - how to help in a truly helpful way, not just attempt a fix that doesn't really work, no matter how much you'd like it to. Bear in mind that forced or bribed compliance is not therapeutic. Compulsory behavior modification, even if it can be achieved, may only cause temporary, outward change and may well foment great resentment along the way. The ultimate result may be an unseen injury of the spirit greater than the behavioral issue originally perceived. Is this the goal? There are better ways to help us get along in the world. Let us tell you, should we choose, why it is we struggle, so you can share with us your understanding of things and aid us in sorting it all out if we ask. You know things we don't know. We know things you don't know. We could be working together. But that will only be possible if more people take after the parents and friends of autistics who look to see who we really are instead of constantly trying to reshape us in their own image. They're not giving up on us by refusing to fix us. They're rallying to our cause, working side by side with us. This means wanting to know what we have to say and giving us full consideration. It means respecting us enough to trust that we are capable of understanding ourselves. It means being willing to look at the world through our eyes, as best we can show it to them, not just guessing without asking. It means looking for answers together when we don't have them either, rather than trying to be the sole suppliers of all the answers for us. It means supporting our independence and our efforts to help ourselves instead of pushing help when it's unnecessary and/or unwanted, then taking it as some kind of personal insult or affront, at best, and as deliberate troublemaking or self-destruction, at worst, if we want to proceed on our own, in our own way. It also means sharing our joys, noticing our positive qualities, valuing our contributions, and acknowledging our accomplishments. It can be done. It is being done. Come be part of it. There's nothing to lose but the very disconnection you've sought to heal us of all along.
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