Life is for living – a review of “Get out, explore, and have fun!”

On her blog at About.com:Autism, Lisa Jo Rudy usually asks questions. In her soon to be released new book, Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities, she answers two very important questions:

  1. Why should you “get out, explore, and have fun” with your autistic child?
  2. How do you do this?

By far the more important of these two questions (in my opinion) is the first, the “why”. Too many parents of children diagnosed as autistic spend all of their “free” time trying to make their child “more normal” or “less autistic”, and not enough time on letting their child be a kid. As Lisa explains, this is true even in – especially in – school.

Many IEPs are so focused on making kids normal that they deny kids the chance to be part of a normal environment. Lisa describes, for instance, how some schools will take autistic students on “life skills” field trips to a grocery store or McDonald’s while their classmates take a trip to a museum or other entertaining – and educational – locale.

Life is for living, and in the first couple of chapters Lisa reminds us that this is as true for our autistic children as it is for our non-autistic children. The first two chapters of the book should be required reading for all parents of children who receive a diagnosis of autism, that’s how important her message is in answering the “why” question. If autistic kids are never given a chance to experience life, how will we – or they – ever know what they want from life?

Lisa spends the bulk of the book exploring the “how” of getting out. As the parent of an 18 year old autistic son who has gotten out there, explored, and had fun, I can say that she has done an excellent job compiling not only lists of possible activities, but the good and potential bad of each as well as tips on how to make sure the experiences are valuable ones.

What I most appreciated in the “how” section is that she doesn’t sugar coat anything. Far from being pessimistic about things, she is simply honest about what you are likely to experience. She also reminds us to be realistic in what we expect of our kids, and of those we interact with “out there”. Even though the “why” applies equally to all kids, the challenges of the “how” will vary. Autism is, after all, a spectrum, and the experiences parents will have when they “get out” will cover a wide spectrum as well.

Only parents can appreciate the challenges they will face with their own kids in trying to get out there. My only suggestion here is that you lean toward stretching your boundaries, and your kid’s, by trying something just a little bit harder than what you think you can do. You will find that this can be hard work, but you will also see that it is worth every ounce of sweat you put into it.

If you are the parent of a young – or not so young – autistic child, you should get and read this book. And give a copy to your child’s teacher, their IEP case worker, the IEP team.

Life is for living, even for an autistic child, and this book reminds us why this is true and how to make it happen.

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A world without autism

If autism could be cured, and if we, as a society, chose to cure it, what would that mean for our future?

How would it impact our lives, and the lives of our children (and descendants many generations down the line)?

What would society look like 50 years from now? 100 years from now, when autism (or autism-like traits) were no longer a part of our world?

What if they had been diagnosed autistic?

In his book Unstrange Minds: Remapping the World of Autism, author Roy Richard Grinker mentions chess legend Bobby Fischer (p. 63) as someone who may have been an undiagnosed autistic. When I read David Edmonds’ book Bobby Fischer Goes to War: How A Lone American Star Defeated the Soviet Chess Machine, I thought the same thing. (For more discussion on the subject check out the Bobby Fischer talk page on Wikipedia.)

I can’t help wondering, if Fischer were indeed autistic, how would his life – and the history of chess, among other things – have been different if he had been diagnosed when he was young? If he had been provided the treatment and services that are typically demanded today for Asperger’s diagnoses, would he have had the impact he did? Would he have been able to have that impact, or would that ability have been “treated” out of him?

You can extend this to any of the great minds that people sometimes say were probably autistic, like Newton, Einstein, Van Gogh. You could also look at those who have been diagnosed with Asperger’s as an adult and think back on how things may have been different, for them and their contributions, if they had been diagnosed younger.

There is no doubt (in my mind, anyway) that the increase in diagnoses of autism, especially Asperger’s, is due in large part to a better understanding of what Asperger’s is and an increased desire of parents to understand why their kids are “different”. Many are being diagnosed now that might not have been diagnosed before, and demanding (and receiving) treatment they may not have received before.

Today, most people – parents, really – who seek an autism diagnosis do so because they want to know what’s wrong and how to “fix” it.  I can’t help wondering what these individuals – and the world – may be missing out on because we want to catch and “fix” their differences early in life.

Of course, a diagnosis doesn’t have to lead to a “fix”. What if a diagnosis were used to let parents and autistics better understand why they are the way they are? That is something they could use to help themselves as they shape their own future.

Just imagine what that world might look like.

(note: this is an edited version of my April 2008 article What if they had been diagnosed autistic? I was inspired to rewrite and repost it based on yesterday’s blog post at about.com:Autism)

What we need are knowledge curators, not managers

The concept of “knowledge curator” has been creeping slowly from the back of my mind to the front over the past couple of years, and received a couple of jolts over the weekend that resulted in one of those elusive “aha moments”.

What we need are curators of knowledge,
not managers of knowledge.

First, I noticed the blurb “curated content from Flickr” when I used the Flickr module on a Squidoo lens.

Second was a quote from Liz Danzico (that I found via Signal vs. Noise blog).

A portfolio of work is a curated experience. … but oftentimes, a portfolio only contains final pieces, as applicants are overly concerned about presenting perfection. Polish doesn’t communicate process though, and therefore I’m left with only part of the story. Messy problems — and how applicants work through them — can show a great deal more in a portfolio than one finished, airtight solution.

I didn’t know it at the time,but this all started back in November 2005 with an article titled Technology makes it easy to ‘remember,’ the trick is learning how to forget, in which I wrote:

My early days in Knowledge Management included a lot of time developing, deploying, and getting people to use “knowledge repositories.” (At least trying to get people to use them.) … I finally realized one day that the problem has become not, “How do we remember all this knowledge that we’ve learned?” but rather, “How do we forget all this knowledge we’ve accumulated that we no longer need so we can focus on what we do need?”

I also noted a quote from the book The Trouble with Tom by Paul Collins related to the need to “eliminate” memories:

Memory is a toxin, and its overretention – the constant replaying of the past – is the hallmark of stress disorders and clinical depression. The elimination of memory is a bodily function, like the elimination of urine. Stop urinating and you have renal failure: stop forgetting and you go mad.

It was this latter quote that was in my mind last summer when, in The importance of forgetting,  I wrote about John Medina’s thoughts on the question of memory and forgetting in Brain Rules:

The last step in declarative processing is forgetting. The reason forgetting plays a vital role in our ability to function is deceptively simple. Forgetting allows us to prioritize events. Those events that are irrelevant to our survival will take up wasteful cognitive space if we assign them the same priority as events critical to our survival.

As I noted then, this is no less true in the organizational context of knowledge/concept work.

Simply capturing everything in document repositories and best practices, without the ability to forget – or supercede – any of it, takes up a lot of “cognitive space” that organizations could be putting to other wise good use.

The trick is figuring out how to forget, and how to figure out what to forget.

The art (or not) of the apology

Wednesday evening I read Apologizing like a human, not a corporation on the 37signals blog (which, of course, reminded me of the similar chapter in Rework). Good advice, seems like common sense.

On Thursday morning I received two apologies in my e-mail. One was a perfect example of apologizing like a human, the other not so much.

The first was from Boingo, apologizing for a rash of e-mails that erroneously went out to their customers. (A slightly modified version of this is also on their blog.)

Subject: An Apology from Boingo

Let me start this off with a big, fat apology.

We’re deeply sorry (and more than a little embarrassed) about any email you received over the weekend that included a database dump in the beginning and a message that your Unlimited account has been canceled and converted to AsYouGo status.

Please be assured that there’s been no change to your account. If it was Unlimited, it still is. If it was AsYouGo, it still is. If it was closed, it still is. The email was meant for internal testing only; the system basically decided otherwise and erroneously sent the test template to a large pool of our customers.

Please disregard these emails and accept our humblest apologies. If you would like additional details, please check our blog “The Hotspot”, which we will continue to update as we gather more information.

Thanks so much for your understanding during this awkward moment in email marketing history. We would never intentionally inconvenience you in any way and strive every day to deliver the best in customer service.

Honest, sincere. “We screwed up and we’re sorry.”

The other “apology” came from a customer service department in response to an e-mail I sent them about a glass picture frame that arrived snapped in two.

Subject: Recent order (#…) – Ticket# LTK…X

Thank you for your email notifying us that your package has arrived damaged. On behalf of UPS we apologize for the inconvenience this has caused as it most definitely left our warehouse in good condition.

We are initiating a damage claim with UPS. Please hold all merchandise and packing aside as UPS can and most likely will come to inspect it. They generally will contact you within 48 hours to make an appointment for inspection.

If you would take photographs of the damaged item, manufacturers box and the outer shipping box and email them to us, would help to expedite the claims process immensely.

Please note that the entire Claims process can take up to 10 business days for UPS to investigate.

As soon as UPS accepts responsibility for this, we will reship the items or issue a refund to your card as per your desire at that time.

If you are in dire need for the items, please call us to discuss reshipment options.

We apologize for any inconvenience or confusion. Please contact us if you have any specific questions.

Boilerplate, shift the blame, impersonal (the template response doesn’t even reference the “product”, a $5 picture frame.)  “Hey, it’s not our problem. We’ll tell UPS, but you need to figure it out with them yourself and then get back to us.”

My response was as straightforward and to the point as I could make it.

You’re kidding, right? Does Adorama really expect me to go through all of this for a $5 piece of glass?

I won’t waste your time with the rest of the “conversation”.  (I’m upset enough that I wasted my own time involved in the conversation). What it boils down to was,

“This is company policy. When UPS gets back to us, we will issue you a refund. In the meantime, please order another frame from us so you can receive it more quickly.”

Don’t hold your breath, guys.

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

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?

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.