An American businessman was standing at the pier of a small coastal Mexican village when a small boat with just one fisherman docked. Inside the small boat were several large yellowfin tuna. The American complimented the Mexican on the quality of his fish.
“How long it took you to catch them?” The American asked.
“Only a little while.” The Mexican replied.
“Why don’t you stay out longer and catch more fish?” The American then asked.
“I have enough to support my family’s immediate needs.” The Mexican said.
“But,” The American then asked, “What do you do with the rest of your time?”
Consider this opening paragraph from the book Strengths Finder 2.0:
At its fundamentally flawed core, the aim of almost any learning program is to help us become who we are not. If you don’t have natural talent with numbers, you’re still forced to spend time in that area to attain a degree. If you’re not very empathic, you get sent to a course designed to infuse empathy into your personality. From the cradle to the cubicle, we devote more time to our shortcomings than to our strengths.
Any autism parent – any parent, for that matter – will likely recognize that this is exactly what we tend to do with our autistic children. In fact, it is what is expected of us, to try to make our autistic children into someone they are not.
But that doesn’t mean that is what we should be doing.
Autonomy – Mastery – Purpose
Aimed at adults who have already heard the starting gun, these are three things that Malcolm Gladwell (Outliers) and Dan Pink (Drive) have written about in terms of meaningful work and a meaningful life. These are also incredibly important parts of growing up.
As infants and toddlers, the focus for kids is to learn, to master things like walking, language, and play. There is not a whole lot of autonomy, nor is there any long term purpose.
As kids grow through adolescence they start to accept, and demand, more and more autonomy. If they are lucky enough to discover a passion that demands all of their attention – sports, academics, music, writing – they will seek out mastery. Some will begin to see their purpose in life, and begin to move in that direction.
As teenagers and young adults our kids become completely autonomous – within bounds, of course – and are free to pursue their purpose and continued journey toward mastery.
As I hinted at last time, though, parents – especially parents of autistic kids – sometimes have a tendency to focus too much on the “mastery” part and defer, sometimes indefinitely, the “autonomy” and “purpose” parts. For parents, it is all too easy – and tempting – to try to control, to MANAGE, our kids’ lives through each of these various stages. To decide what our kids should be interested in, what their purpose is. To make decisions for them, and not allow them the autonomy they crave. (“He’s only 10 years old, he can’t make a decision like that for himself.”)
Much more difficult – and, in my opinion, ultimately more rewarding – is for parents to be a LEADER for their kids. To observe and discover what our kids strengths are, what they are interested in, and encourage mastery in that. Even if it something we don’t understand or that we would never do. To accept the purpose they discover for their life, and encourage them to live that purpose even if it seems “stupid” to us.
To always challenge our kids to reach just a little too far instead of always pulling them back from the edge.
Autism blogger Lisa Jo Rudy once challenged parents to “quit autism for just one day.”
Your child with autism may always be autistic, but there are places and circumstances in which it either doesn’t matter – or in which your child’s special talents make autism irrelevant. Whether it’s at the beach, in the woods, at a concert, or creating a work of art – just for one day – go somewhere where autism doesn’t matter.
Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.
Everything I’ve learned about parenting an autistic child can be boiled down to an incredibly simply stated idea (provided to me by a fellow autism dad): Parenting is parenting.
My response to Lisa’s challenge reflects this attitude:
Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.
I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.
I am, to use your words, “just a plain, ordinary, loving, proud parent.”
No doubt parenting an autistic child can be hard. But don’t let that turn you into an “autism case manager”. Don’t let it stop you from being a parent. A plain, ordinary, loving, proud parent.
Since I signed up today for the Strange Loop software developer conference here in St. Louis, it seemed fitting to repost this article, originally published on my autism blog nearly three years ago.
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Earlier this summer  I read Douglas Hofstadter’s new book, I Am a Strange Loop. As Hofstadter mentions early in the book, a more appropriate title would have been “I” is a Strange Loop; the book is about the nature of consciousness, that elusive concept of “I”, and not an autobiographical work as the actual name of the book suggests.
Hofstadter’s works have been among my favorites since I read his first book, Godel Escher Bach: An Eternal Golden Braid, in high school. The new book is, in fact, an updating of the ideas he first expressed in GEB. I have long hoped that he might address issues of the mind and consciousness in terms of atypical minds (such as autism), but aside from some passing discussion of those minds, I Am a Strange Loop does not provide any real insight into how the concept of “I” fits with autism.
On Monday, I was pleased to find a paper that specifically addresses the question of autism and “I”, Self-Referential Cognition and Empathy in Autism, co-authored by Michael V. Lombardo, Jennifer L. Barnes, Sally J. Wheelwright, and Simon Baron-Cohen. From the paper’s abstract:
Background. Individuals with autism spectrum conditions (ASC) have profound impairments in the interpersonal social domain, but it is unclear if individuals with ASC also have impairments in the intrapersonal self-referential domain. We aimed to evaluate across several well validated measures in both domains, whether both self-referential cognition and empathy are impaired in ASC and whether these two domains are related to each other.
Conclusions/Significance. We conclude that individuals with ASC have broad impairments in both self-referential cognition and empathy. These two domains are also intrinsically linked and support predictions made by simulation theory. Our results also highlight a specific dysfunction in ASC within cortical midlines structures of the brain such as the medial prefrontal cortex.
Instead of looking at autism as a syndrome of self-focus (the Kanner approach), the paper starts from the concept of “absent-self” put forth by Uta Frith in her book Autism: Explaining the Enigma. I had not heard of Frith before reading this paper, so I can’t really comment on her ideas. But the paper itself seems to make sense. I’m still going through it, trying to understand all that they are studying and what their results mean. (I did learn a new word:alexithymia – difficulty identifying and describing one’s own emotions.)
My first time through I Am a Strange Loop was to soak in the big concepts. I typically wait a few months before re-reading something like this so I can get into the details, but I think I’ll start again sooner than that. (At the moment, I’m reading Steven Pinker’s latest book The Stuff of Thought.) Now that I have a bit more information about autism and “I”, I’ll have a better context for processing what I read.
Another interesting note about the paper, it was originally published by the Public Library of Science under a Creative Commons license. The PLoS home page describes it as a “A new way of communicating peer-reviewed science and medicine”, so I will assume the paper has been appropriately peer reviewed. But I think I will do a bit more checking just to be sure. (Of course, any insight from readers here would be greatly appreciated.)
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Chances are very good that I will re-read I Am a Strange Loop again before Strange Loop; curious to see what I get from it this time.
My rating: 5 of 5 stars
In his new book, Cognitive Surplus: Creativity and Generosity in a Connected Age, Clay Shirky covers some of the same ground as several other authors I’ve read this year. But even though some of the starting material may be the same – such as the Israeli day care story – Shirky tells a very different story, with a very different moral and outcome than those other books. (In case you’re wondering, the two that come immediately to mind are Dan Pink’s Drive and Seth Godin’s Linchpin.)
The upshot of the book is that in the last half of twentieth century people found themselves, in general, with a higher level of education and a larger amount of free time than at most any other time in history, while at the same time “accidents” of technology and policy created an environment of increased social isolation (think interstates, suburbs, and TV). On top of this physical isolation, there was technological isolation; the means simply did not exist for individuals to easily share their knowledge or their interests, and the ability to organize large groups around an interest was reserved for the well financed. This was the purview of the “professionals”.
As a result, we – especially in the US – became a nation of consumers. Even as the technology has developed over the past decade or so to allow for broad sharing and easy organizing, Shirky says, we are only now coming to understand the implications and actually be ready to take advantage of the opportunities this technology presents. We are only now coming to appreciate what the “amateurs” can bring.
And this, in the end, is the point of the book: We have an abundance of opportunities available to us as a result of the technologies of social media (and all that entails), and it is our responsibility to take advantage of those opportunities.
A lot of thoughts rattling around my brain about this great book, more to come. In the mean time, check out Shirky talking about his ideas in this TEDx talk.
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:
- Why should you “get out, explore, and have fun” with your autistic child?
- 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.