Archives for posts with tag: acceptance
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Make up your own mind about autism

June 4, 10 //
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A while back I had lunch with an old friend, and the topic of conversation wound its way to autism. I, of course, am the parent of an autistic son. As it turns out, his nephew is also autistic. He wanted to understand autism, and I wanted to help him understand. But I didn’t know where to start.

There are many possible ways to approach the question. I could start with: Vaccines cause autism, once they have it, it’s a long struggle to recover them. Or how about: Nothing “causes” autism, it is just another aspect of this neurodiverse world we live in.

As far as treatment: Chelation, to get rid of the mercury and other metals. Or: A special diet that is almost impossible, and incredibly expensive, to adhere to. Or: ABA. Or: (add your favorite treatment here). How about, there is no need to “treat” the autism, you just need to treat your child as a child; different, but still just a child.

For someone to say that all autism is nothing more than mercury poisoning is irresponsible, though I don’t doubt that at least one case of autism could be traced directly to mercury. To say that all autistics live miserable lives and will never be happy or able to live and function on their own is simply untrue, though it goes without saying that there are some autistics whose life will be exactly like that.

On the other hand, to say that all autism is solely the result of genetic factors – with no influence from environmental triggers – is irresponsible, though I sincerely believe that some cases of what we call autism are indeed purely genetic manifestations. To say that all autistics have the potential to live happy lives and live and function on their own is as untrue as the opposite example above, though obviously some autistics will find happiness and success on their own.

If you are new to autism, because you have a newly diagnosed child or you are just curious, listen to what the extremists and fundamentalists have to say. Read the blogs and books of parents of children with autism and the books and blogs of autistic adults.

And then pay attention to your own instincts and make up your own mind.

Get to know your child – as he or she is, not how you wish they were – and figure out what YOU think is best.

Not just for your autistic child, but for you. For your spouse. For your other children. There is no simple answer, no matter what you hear, and there is no simple path to follow as you make your way through the world of autism.

Sounds a lot like parenting, doesn’t it?

His decision, not mine (thoughts on an autism cure)

April 13, 10 //
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A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right?

I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by I learned.

If the child study team that gave us the diagnosis had asked that question right after giving us the diagnosis, when our son was just barely three years old, I would not have hesitated. I would have given him the pill right then and there, no questions asked. (Well, maybe “do you take credit cards?”)

But if you had asked me five or six years later, as my son approached 10, my answer would not have been so quick in coming, or quite so easy to make. At almost 10, he was still autistic, but he was so much more. The more I thought about it, the more I realized that it would be impossible to separate his autism from the rest of him. If we cured the autism, what would be left? Or, I should say, who would be left? Would it be the son I knew and loved, or would it be a “new” child that I would need to get to know all over again? Would I like this new child, this new addition to the family? Would he like who he had become?

Ask me now, when my son is nearly 19 and preparing to graduate high school, and it would be even harder for me to answer. Although in some ways it would be much easier, because what I’ve realized is that at this point in his life it is not my place to make that decision for him. If someone came to me today and asked that question I would very quickly respond, “Don’t ask me, ask him; it’s his decision to make, not mine.”

This may be a surprising answer to those of you that don’t have experience with autism. But if you are a parent, you know exactly what I’m talking about. When our kids are young, it is up to us to guide them, direct them, and protect them. As they get older, we help them discover who they are and what they want to be. And then we “let go,” we let them leave the nest.

It is the same for our autistic kids, even if the path is a bit longer or rockier.

Note: Author John Elder Robison also wrote about cure today, from the perspective of an autistic person.

Neglect, or good parenting?

April 12, 10 //
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The following ties in well with my recent post Parents should be leaders (not managers) and my overall theme for Autism Awareness Month, so I’m reposting it in its entirety.  I first posted this in April of 2008.
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What would you think if your friend/neighbor/sibling told you that they had left their 9 year old son at a department store in mid-town Manhattan, by himself, because “he had been begging for me to please leave him somewhere, anywhere, and let him try to figure out how to get home on his own”? Would you call Child Protective Services, or would you say “good for you”? Would you ever do something like that?

After you’ve had a chance to think about it for a second, check out the essay Why I Let My 9-Year-Old Ride the Subway Alone by Lenore Skenazy (also available on her new blog, Free Range Kids).

Was I worried? Yes, a tinge. But it didn’t strike me as that daring, either. Isn’t New York as safe now as it was in 1963? It’s not like we’re living in downtown Baghdad.

Anyway, for weeks my boy had been begging for me to please leave him somewhere, anywhere, and let him try to figure out how to get home on his own. So on that sunny Sunday I gave him a subway map, a MetroCard, a $20 bill, and several quarters, just in case he had to make a call.

No, I did not give him a cell phone. Didn’t want to lose it. And no, I didn’t trail him, like a mommy private eye. I trusted him to figure out that he should take the Lexington Avenue subway down, and the 34th Street crosstown bus home. If he couldn’t do that, I trusted him to ask a stranger. And then I even trusted that stranger not to think, “Gee, I was about to catch my train home, but now I think I’ll abduct this adorable child instead.”

Long story short: My son got home, ecstatic with independence.

Long story longer, and analyzed, to boot: Half the people I’ve told this episode to now want to turn me in for child abuse. As if keeping kids under lock and key and helmet and cell phone and nanny and surveillance is the right way to rear kids. It’s not. It’s debilitating — for us and for them.

It’s that last sentence in the excerpt above that really caught my eye. It is no less true for our autistic kids than it is for our non-autistic kids. There are obviously some differences that need to be allowed for, but only by being given independence – true independence – can kids learn how to be independent, and parents learn how to accept that independence.

As you can imagine, there was a huge negative reaction. But she also received some support from her readers. Check out her follow up, America’s Worst Mom, for the details. Security expert Bruce Schneier also weighs-in on his blog, that is worth a read as well.

Sure there are risks, and there will be mistakes and issues along the way. But isn’t that what life is all about?

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On the subject of leadership, there is a lesson to be learned here for managers/leaders of all kinds.

Dysfunction as high function

April 8, 10 //
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During his New Year’s Day seminar, author Dan Pink shared five trends that he is following in 2010. In the science category, the trend he is keeping an eye on is dysfunction is high function. During the discussion he referenced the Atlantic Monthly article The Science of Success, which considers the possible “up-side” of genetic dysfunction:

Yes, this new thinking goes, these bad genes can create dysfunction in unfavorable contexts—but they can also enhance function in favorable contexts.

Re-reading the article last night reminded me of a story I heard many years ago in an episode of Fresh Air focused on Asperger’s Syndrome (paraphrased):

A boy with Asperger’s Syndrome is focused on snakes. He knows about everything there is to know about snakes, and can bring snakes into just about any story or subject. If he can’t make it about snakes, he doesn’t care about it.

For a cumulative school project this boy had to prepare a report about the Battle of Gettysburg. The purpose of the project was to teach research and presentation skills. You guessed it – no snakes, the boy didn’t care and wasn’t doing anything on the project. Until, that is, the teachers and staff came up with the idea, “What if we let him do his report on The Snakes at the Battle of Gettysburg?”

To make a long story short, this got the boy’s attention and he dove right in. To do the project, he had to learn as much or more about the battle and the geography, etc., as any other kid. His project was so good, and so unique, that he was asked to present his project to the entire school. Everyone wanted to hear the presentation about the snakes at the Battle of Gettysburg, and everyone thought it was great.

The kicker here is this: Before this presentation, everyone avoided this boy because all he wanted to talk about was snakes.

I recognize that humans are a social bunch that prefer to socialize with others like themselves, but it is unfortunate – for both the “typical” and “non-typical” populations – that anything that is different is so shunned, before even being given a chance.

Cultivate your kid’s strengths

April 6, 10 //
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I found this bit of wisdom in the book Never Eat Alone by Keith Ferrazzi. Though geared at self improvement, this quote struck a chord with me as a parent:

The trick is not to work obsessively on the skills and talents you lack, but to focus and cultivate your strengths so that your weaknesses matter less.

The story of Tony DeBlois is an example of this in action. His mother recognized that Tony had serious weaknesses/disabilities to overcome, but also realized that his strength in music could make much of that weakness irrelevant.

All of our kids have their own strengths. Much of it may be hidden from us as parents*, or their strength may be something that we don’t quite understand or appreciate as worth cultivating.

But it is by cultivating these strengths, in all of our kids (and ourselves), that we can help them be successful in whatever they ultimately decide to do.

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* Ferrazzi also gives this observation from Machiavelli: “Everyone sees what you appear to be, few really know what you are.”

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Brett's Waste Blog by G. Brett Miller is licensed under a Creative Commons Attribution-Share Alike 3.0 United States License. Based on a work at blog.gbrettmiller.com.

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