Indulge your kid's passion, and build on their strengths

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.

The following originally appeared here in February 2006.

= = == === =====
Indulge your (kid's) obsession

I spent Saturday afternoon this weekend at a Yugi-oh regional tournament with my younger (non-autistic) son, who is 13. Though he was not the youngest duelist there, he was one of a handful of kids under 15 in a group of 80+ duelists. (In case you’re not familiar with Yugi-oh, participants are duelists, not ‘players.’) The ages ranged all the way up to 40+, with the bulk of them in their late teens through early twenties. All duelists were male, save one.

I have the feeling that if you were to observe many of these guys in a ‘normal’ environment – say your local high school – your first impression would be “outcast,” “nerd,” or something similar. They have long unkempt hair and a preference for black t-shirts. They keep to themselves, or a small group of like-minded friends. They are not the ‘social butterflies’ that seem to be demanded in that environment. In a word, they would appear to be “non-social” (ok, maybe that’s two words *-).

Put almost a hundred of them in a room together at a tournament where everyone is trying to prove they are the best duelist in town, though, and what you get is a room full of ‘social butterflies.’ As duelists finish their match, they congratulate each other on a match well played. They walk through the room, soaking in what others are doing. In between rounds, they seek each other out, talking strategy, asking about the cards they have (Yugi-oh is what they call a Trading Card Game). It doesn’t matter if you are good are bad, new or experienced. The only thing that matters is that you are interested (I should say obsessed) with the game.

The thing is, many parents I know don’t understand – and thus discourage – their kid’s obsession with this and other similar games. These parents can’t grasp the hours and hours their kids spend learning each card’s abilities, their strengths and weaknesses, how they can be used together, and how they can be used in response to an opponents actions, or the many more hours (and $$$) spent acquiring and sorting through cards to build the perfect deck. And of course, the many many hours spent practicing by dueling with friends, or in solo practice.

Wait a second. Those things sound an awful lot like what most kids go through when they find their obsession. Take a sport like football. Kids spend hours learning playbooks. They spend hours after school every day of the week at practice, sometimes on the weekend. They gather for games in the hope of proving they are the best. It’s just that these ‘obsessions’ are ‘mainstream’, so their parents proudly refer to them as their children’s ‘passions’ or ‘talents.’

Luke Jackson said it best (I’ve quoted this before, but it seemed worth repeating):

Q: When is an obsession not an obsession?

A: When it is about football.How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys 'eat, sleep and breathe' football and people seem to think that if someone doesn't, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn't shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.

Though I hate to engage in arm-chair neurology, I’d be willing to bet that if these duelists were ‘evaluated,’ quite a few of them would show up on the autism spectrum, likely as Aspies. That is, if they were evaluated in the general context that those types of evaluation are done – against the ‘norms’ of society today. Conduct their evaluation in the context of their world, the world in which they can indulge their passions, and I think they would show up as perfectly normal (whatever the hell that means).

In my thinking over the last week or so on what it means to be different, I seem to keep coming back to the same point over and over: it’s not our kids that have a problem; it’s the world they must live in that has the problem.
===== === == = =

Autism and the "complex social environment"

Mike Stanton's post Of mice and men and autistic fruit flies includes the following criticism of an autism related study using fruit flies:

But autistic fruit flies? Autism is a complex social disorder. Fruit flies are not complex social beings.

My first thought was, if autism is a "complex social disorder" it is only because we live in a complex social environment. In the comments, Amanda disagrees with Mike that autism is a social disorder at all, and I think I agree with her.

True, autism is measured against the "norms" of the complex social environment in which we live, but the "condition" of autism exists independently of those norms. If those norms didn't exist, or if our social environment was different, those who are autistic in our world would still be autistic in this alternate world.

Mike's commentary also includes a passage with which I wholeheartedly agree:

They showed diminished social interaction but improved cognitive performance compared to neurotypical mice. This is automatically seen as a deficit. But surely progress is driven by those individuals who turn their back on the herd and consider the external world?

Kristina Chew also has some thoughts on the studies, and Mike's post, in her post Can Animals Have Autism?

"In My Language": The video that caught CNN's eye

The spark that caught CNN's eye about Amanda Baggs (see my last post if you don't know what I'm talking about) was her video "In My Language" posted on YouTube. While it is easy enough to just go to YouTube to watch it, I would like to share it here as well.



tagged as: Autism, Amanda Baggs, Anderson Cooper, Sanjay Gupta, Intelligence, Neurodiversity, Autism Advocacy

The wonderful adventure of life

In her post Everyday People, abfh has the following to say about her "abnormal" behavior as a child:

When I was a child, I often wandered away, climbed tall trees, played in traffic, and didn't pay much attention to adults who told me that I was not behaving properly. That didn't mean I had some sort of tragic and mysterious mental defect that made me incapable of social interaction, understanding danger, etc., and what's more, I certainly wasn't suffering or trying to escape from life. Quite the contrary—being alive seemed like a wonderful adventure, too precious and fascinating to be wasted sitting obediently in dull classrooms. I got kicked out of several primary schools for wandering away when the teacher wasn't looking, but I never thought that made me abnormal, either; I just thought schools were inhabited by narrow-minded conformists. I wanted to explore the world, going on brave quests like the kids in my favorite adventure stories. No doubt my view of life was absurdly melodramatic, but I'll tell you what: Those who would describe my existence as a devastating tragedy are being far more absurd.

I can't help but think of the "unreasonable man" quote from Shaw that I wrote about a while back. It also brings to mind a commercial for I don't know what product that shows kids "aspiring" to mediocrity ("I want to get stuck in middle management"). It makes we wonder about what we are teaching our children - autistic or not - about living this great adventure, both in our schools and as parents.

Everyone can be a 'winner' (following on a theme in comments to Mike Stanton on a previous post), but not everyone can be a 'winner' in the same thing. Everyone can experience the great adventure of life, but none of us have the same great adventure. The problem seems to be that we as a society are trending towards an homogeneous world in which we are all expected to 'compete' in the same things, that we are all expected to have the same Great Adventure.

Which is unfortunate, but is it inevitable?

Back to school - some thoughts on being different

I spent the morning a couple of days ago at a high school freshman orientation. We all know the horror stories of the push to fit in to the social environment of high school. It occurred to me as I was watching the kids that it must be very hard for the neuro-typical kids who are ‘different.’

For autistic or other ‘special’ kids, the typical kids kind of expect them to be different. “Oh, that’s just him, he’s autistic you know.” But for the different NT kids, it must go something more along the lines of, “Man, that kid is just weird” and “Hey, Bobby, why don’t you act/dress/speak like the rest of us?”

I guess that is really just good old-fashioned peer pressure.

We can only hope that all kids are able to be themselves and achieve their own destinies, despite any attempts – however benign or malicious – to make them change.

Here are some lyrics from a song that you may recognize. A rant against the shallowness of conformity, and a hope that we can achieve more:

What happened to the dreams of a girl President
She's dancing in the video next to 50 Cent
They travel in packs of two or three
With their itsy bitsy doggies and their teeny-weeny tees
Where, oh where, have the smart people gone?
Oh where, oh where could they be?
…
Disease is growing, it's epidemic
I'm scared that there ain't a cure
The world believes it and I'm going crazy
I cannot take any more
I'm so glad that I'll never fit in
That will never be me
Outcasts and girls with ambition
That's what I wanna see

Disasters all around
World despaired
Their only concern
Will they **** up my hair

In case you don't recognize the song, it is Stupid Girls from Pink.

tagged as: AutismAsperger's Syndrome

A parent's thoughts on cure and prevention of autism

In any discussion about autism, especially with parents of newly diagnosed children or friends/family who have no direct experience with autism, the subjects of cure and prevention will inevitably come up. "Can you fix him?" "What went wrong?" "I'm trying to get pregnant, is there anything I can do to make sure my kid isn't autistic?"

The answers to these questions depend quite a bit on whom you ask, and also when you ask them. In one of my early posts to this blog, I wrote the following:

"We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?"

Pose this question to a group of parents of children just diagnosed with autism, and chances are you would get a very quick, passionate, and nearly unanimous response of YES!!! Ask this question to those parents of older children, though, and the responses would likely be more hesitant, not quite as passionate, and definitely not unanimous.

In (R)evolutionary parenting, MOM-NOS describes how her feelings have changed toward her son's autism over time:

When Bud was initially diagnosed, I viewed autism as "other" - an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.

Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part.

But as I came to understand Bud better, I learned that his autism is not...one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy.

The other key thing we must consider as our kids grow older is that they will develop opinions of their own about their 'condition' in life. If you were to present me today with the cure question I asked above, I would be unable to answer. Not because I'm undecided about what I would do, but because I think at this point (15 years old) it is no longer my decision alone to make. Sure, as a parent I would expect to have some input, and would do my best to make sure my son understood the implications of both options.

If you had asked me the question 13 years ago, I would have had to decide. Not knowing then what I know now, I have no doubt that I would have quickly and unreservedly said, "Yes." But if I had known then what I know now, what would my answer have been?

pregnant pause

In many ways, asking the cure question at the initial diagnosis (assuming it was early enough) is the same as 'preventing' autism in the child; if the autism is removed before it has a chance to "infuse every part of him and it shapes who he is in this world," then the autism will have been prevented from being a defining part of the child. Is prevention a 'bad' thing? Again, it depends on whom you ask.

If you are talking about pre-natal testing, the discussion will range from "with this test you can determine if your child will be autistic or not and decide whether or not you want to have him" to "this is the first step to eugenics and wiping out of autistics." I'm choosing not to engage in this discussion in this post, though I'm sure it will come up in the comments and in later posts.

If, however, you are talking about prevention through a "shot" like I mentioned above (I know, I know, this is not the way it would probably work - please bear with me), how would you answer the question. What factors would you consider?

I can't help but go back to the questions in my mind that prompted me to write To hear or not to hear. What do I want life for my son to be like? What options do I want him to have? What will he think of my decision when he gets old enough to understand what I have done?

If I had a child who was born deaf and was told by the doctors that through surgery my child would be able to hear, but the longer I waited the harder it would be for my child to transition from a non-hearing world to a hearing world, I must admit that I wouldn't hesitate any longer than it took me to figure out how to pay for it. Why should I think any differently about autism?

By saying I would prevent autism at an early age if I could, I'm not saying that I don't value my child as he is now. I can't imagine these past 15 years without him, and it is safe to say that my career path, my wife's career path, and my other son's life would be completely different had we not lived in Autismland all this time. But at the same time, I have no doubt that life without autism would have been just as enjoyable and rewarding, yet filled with the more 'typical' challenges that parents of teenage boys experience.

Parenting is hard, mainly because it is a long-term investment of time and effort (and money, of course) with a high degree of uncertainty about the final outcome. The things I do today will have impacts years from now that I could never imagine. I see one of main roles as a parent as the one who sets the path along which my children will begin their journey in life. Along with that, it is my job to help them understand the path they are on, the future paths that lie before them, and an understanding of how to navigate the world.

Or, as MOM-NOS says in (R)evolutionary parenting:

I will try to help him build the foundations that will serve him best [as an autistic person in a largely neurotypical world] - foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he's learned.

Or not use them.

My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.

Parenting is hard, and every parent approaches the challenge in different ways. I don't like the way some people parent their children, and I am in awe at how others make it look so easy. This applies to both "typical" parents and autism parents. But it is not my place, nor anyone else's I believe, to tell another parent how to raise their children. (And no, I don't believe anyone else should tell me how to be a parent either.)

In the end, parents answer only to themselves (obvious legal/moral exceptions aside) and, when they get older, their children. I'll leave it to them to judge.

tagged as: Autism, Parenting

The other end of the spectrum: "Special" education for gifted kids

In our local paper a couple of weeks ago was the article Parents, students fear for future of gifted programs. In a nutshell, gifted students and their parents are asking for exactly what many parents of autistic kids are trying to avoid- segregation from the regular classroom:

The resolution notes that gifted students have educational and developmental needs that differ from school populations as a whole, and the board believes gifted students "require programs or services beyond the level ordinarily provided through the regular school program."

"I moved to Rockwood due to the gifted programs, which I hope we can keep at their current level," parent Karen Smith said. "The way gifted children learn is so different that they need stimulation and different types of (teaching)."

Parent Julie Loos said the gifted program "prepares my children for real-world solutions."

Replace "gifted" with "autistic" and I think the statements are just as valid. Why, then, do so many parents of autistic kids want to simply put their kids in the mix with the 'normal,' instead of demanding the "stimulation and different types of teaching" that their learning style and abilities demand?

At the same time, programs for the gifted are facing many of the same challenges as 'regular' special education:

[They] favor guidelines including a means to monitor qualifications of teachers hired by districts to teach in gifted programs; continuation of certification requirements for gifted teachers; maintaining state guidelines for identifying gifted students; a means to monitor and report the number of students identified by districts as gifted; requiring districts to annually report to the state concerning whether they provide gifted programming and its nature; providing information on gifted programs on districts' annual report cards; and enhancing the Missouri School Improvement Program standard for gifted programs, so they become more important to the overall accreditation process.

Let the battle for the buck$ begin.

Update (21 Feb 08): Marla has posted a good discussion of this topic from a more personal perspective.
- - -- --- -----

tagged as: Autism, Gifted, Education, Parenting, Missouri, Special Education