Division in the Autism Community – what next for us?

“It’s very hard for members of the three groups to find common ground.  People tend to see autism through the lens of personal experience.  An autistic college student who has trouble with organization and social skills is likely to view autism very differently from a parent whose child is non verbal, cognitively disabled, and self injurious. ”

Source – Division in the Autism Community – what next for us?

Don’t ask me, ask him (about the autism C-word)

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 what I learned.

If the child study team that gave us the diagnosis had asked me 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 20, 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 out autistic kids, even if the path is a bit longer or rockier. It is, after all, their life to live.

Devote more time to your kid’s strengths than their shortcomings

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.

Normal people aren’t normal either

Set in the near future (30 years or so), Elizabeth Moon‘s novel The Speed of Dark is the story of Lou Arrendale, an autistic man presented with the possibility of being cured, his contemplation of what his decision – either way – would mean, and the consequences of his eventual decision. As you might imagine, Lou gave quite a bit of consideration to what it means to be normal. (Even in the future, it seems, there is a desire to make people “normal”.)

I do not think everyone else is alike in every way. She [Dr. Fornum] has told me that Everyone knows this and Everyone does that, but I am not blind, just autistic, and I know that they know and do different things. The cars in the parking lot are different colors and sizes. Thirty-seven percent of them, this morning, are blue. Nine percent are oversize: trucks or vans. There are eighteen motorcycles in three racks, which would be six apiece, except that ten of them are in the back rack, near Maintenance. Different channels carry different programs; that would not happen if everyone were alike.

And some of his thoughts based on a specific situation:

Sometimes I wonder how normal normal people are, and I wonder the most in the grocery store. In our Daily Life Skills classes, we were taught to make a list and go directly from one aisle to another, checking off items on the list. Our teacher advised us to research prices ahead of time, in the newspaper, rather than compare prices while standing in the aisle. I thought- he told us – that he was teaching us how normal people shop.

But the man who is blocking the aisle in front of me has not had that lecture. He seems normal, but he is looking at every single jar of spaghetti sauce, comparing prices, reading labels. Beyond him, a short gray-haired woman with thick glasses is trying to peer past him at the same shelves; I think she wants one of the sauces on my side, but he is in the way and she is not willing to bother him. Neither am I.

As parents we often spend a lot of time trying to help our kids to fit in, to be normal (even as we ask them, “If everyone was jumping off a bridge, would you jump too?”). Of course, this is often because our kids want to fit in. And there is nothing wrong with that.

But if you find yourself trying to get your kid – autistic or not – to fit in, to be more normal even if they don’t want to be, take a moment to ask yourself why you are doing it. And think about what it is that you are trying to get them to do. Is it something that you think Everybody is doing, when in fact Nobody really is?

Lead – don’t manage – your (autistic) kids

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.

Don’t let autism stop you from being a parent

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.”

Every day.

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.

Every day.

Autism and “I”

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 [2007] 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.