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.

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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?

Perseveration, or perseverance? Obsession, or passion?

The distinction between “perseverate” and “persevere” is one that I have often wondered about. What I’ve come up with, in a nutshell, is this:

  • perseverate is bad, keeping at something for no real purpose
  • persevere is good, keeping at something in pursuit of a meaningful goal.

Another way to look at it is that someone who perseverates is acting on an obsession, while someone who perseveres is pursuing a passion. In his article Passion Versus ObsessionJohn Hagel provides some insight into this distinction as he reconsiders his earlier question, “When does passion become obsession?“:

To say passion becomes obsession is to make a distinction of degree. It implies that obsession is a more passionate form of passion—too much of a good thing. However, I’m now convinced that passion and obsession do not vary in degree, but in kind. In fact, in many ways they are opposite. [original emphasis]

A real challenge for all parents, but especially parents of autistic kids, is to understand the difference between an obsession and a passion of our kids. Consider the following, a passage that I wrote comparing two different authors’ views on the effect and value of video games:

To Prensky, video games are a passion that can lead to positive learning and skills…. For the Bruners, video games are an obsession that lead to destroyed lives.

If you read the entire article, you will see that the amazing thing is that both Prensky and the Bruners had basically the same understanding of how games work and draw players in but come to wildly different – opposing – conclusions about what it means. For one, games provided an outlet for passion; for the other, games are a destructive obsession.

So how exactly do you figure out if your kid’s behavior is an obsession – so you can help understand and overcome it – or a passion that you can nurture and encourage?  For many parents, especially of “normal” kids, this can seem pretty straightforward: if your kid is interested in something weird, it is an obsession; if it is something more common, then it is a passion.

But just a few seconds thought, serious thought, and you realize that this is not a very good way to make this distinction. Or, as teenage autistic Luke Jackson asks (in a quote that I’ve used before) with more than a hint of sarcasm:

When is an obsession not an obsession?

When it is about football.

For parents of autistic kids, this question is more than academic. Perseveration, or what we believe is perseveration, is a hallmark of autistic behavior. But what if what we are seeing is really just good old-fashioned perseverance?

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.

Don’t mourn for them

The HBO film Temple Grandin, which I wrote about back when it first aired, recently won 7 Emmy awards, including Outstanding Made for TV Movie. Here’s what I had to say about the movie back then:

I encourage you to watch this film with an open mind. It may just help you understand the sentiment that those with autism are different, but not less, and are most definitely not broken.

This sentiment was flowing in full force at the televised ceremony last Sunday. It is one small step, but what a powerful example Grandin’s life is of what is possible. Even if you can’t imagine it ever being possible.

From her website:

Dr. Grandin didn’t talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. She tells her story of “groping her way from the far side of darkness” in her bookEmergence: Labeled Autistic, a book which stunned the world because, until its publication, most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life.

Dr. Grandin has become a prominent author and speaker on the subject of autism because “I have read enough to know that there are still many parents, and yes, professionals too, who believe that ‘once autistic, always autistic.’ This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can” (from Emergence: Labeled Autistic).

All of this has brought back to mind what I – and many – consider one of the most important essays about autism by an autistic person, Jim Sinclair’s Don’t Mourn for Us:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize. But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity.

Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

Please take a few moments and read the entire essay. You’ll be glad you did.