Asperger’s

By now I ought to be able to write about Asperger’s with some objectivity and perspective.

Asperger’s is not the worst thing a kid or his parents might have to deal with.  But as far as I’ve ever been able to see, Asperger’s kids lead lives of daily frustration, disappointment, self-recrimination, bafflement, and loneliness and it’s amazing to me that an Asperger’s kid can head off to bed at night, knowing what he’s going to face in the morning, cheerfully wishing his parents a goodnight and even more amazing that in the morning he can march himself out the door to school, whistling.

Today was a morning of school-related parental failure and I just can’t bring myself to be objective or find any perspective.  All I feel is that if I ran into Moby right now I’d punch him in the nose.

In an interview with The New York Times, the musician Moby talked about how he was a purist when it came to tea, preferring it untainted by milk or sugar. “It might be a function of Asperger’s,” he said.

“You have Asperger’s?” asked the interviewer.

“No,” Moby said. “I just like to pretend I do. It makes me sound more interesting.”

Globe & Mail columnist Elizabeth Renzetti doesn’t say how first hand her experiences with Asperger’s are, but she must be close to someone who has to deal with it to know this:

So is Asperger’s “cool” now, as Moby seems to think? Is it merely geek chic, the undiagnosed condition that may have afflicted Mozart and Einstein? Not if you ask the thousands of people who struggle every day to function at work and school in a society that may view them as quirky, but doesn’t really understand how difficult it is to exist when you are, essentially, always speaking a foreign language.  Or is it more likely that people share (even in some small way) the suspicion that this is all just a trendy camouflage, and agree with stand-up Denis Leary’s allegedly comic observation that “your kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

I think I’d like to punch Denis Leary in the nose too.

Dealing with Asperger’s isn’t a matter of accepting that you are mildly and interestingly eccentric.

It’s living out of synch with everybody around you and knowing it and not having a clue how to fix that.  It’s feeling as though you are from another planet even when you are with the people who know you and love you best.  It’s suspecting that you are always missing the point, that you are not quite in on the joke, that there was something that was said you should have paid closer attention to, that you said something you shouldn’t have said but you have no clue what it was or why you shouldn’t have said it.  It’s wondering, all the time, “What did I do this time?”

Whatever Renzetti’s experiences are, her column offers some of the objectivity and perspective I can’t manage right now.

Read the whole thing.

Hat tip Steve Kuusisto.

Comments

[MB Williams]

Having two children with autism (one who is now more on the AS side,) I mostly learned about Apserger's as a concerned parent. Then I became convinced I was married to one. However, after a year with a new BFF who has been diagnosed since childhood, I came to realize that all my strange quirks and perservations (and, boy, can I perservate) were probably indicative that I, not my spouse, was the one sliding down the spectrum scale. And, yeah, the always being out of sync with everyone, always overcompensating to try and comprehend the secret code of communication, wanting to fit in - I don't see anything at all "interesting" in all this that would compel people to want to pretend to have to live this way. I don't know if I want to be someone else, as I've worked hard to fit into this skin, but I really wouldn't wish the challenge on my worst enemy. Well, maybe Dick Cheney.

Good post, Lance.

[mac macgillicuddy]

It is difficult, if not impossible, to be objective where loved ones are concerned.

From my limited experience with Asperger's Syndrome, it is considered by today's experts to lie on the Autism spectrum. Though I am not exactly sure what that means, I also know that Tourette's Syndrome lies there somewhere, too. I have more direct experience with TS.

To me, it seems that the various aspects of Autism are the new Alzheimer’s. It's OK to not understand it and to make it comic. People who today would no longer dream of saying they are having a "senior moment" or suffering from mild Alzheimer's now laugh about and think they're clever when they say they have "vehicular Tourette's" as they swear in the car at other drivers (though in fact swearing is only one possible, and an uncommon one at that, verbal tic that can characterize TS).

Our son faces each day with the same sense of fate and challenge you describe. He returns home after subtle and not-so-subtle social struggles at school that he doesn't always confide in us about, but that are always with him.

[Sherri]

It seems to be inevitable that when attention is drawn to a condition, first everybody claims to have it, then people start claiming that nobody really has it, that it doesn't really exist, that we're just medicalizing ordinary differences. It happened with depression and ADD, now it seems to be happening with Asperger's. I have some understanding of the challenges of Asperger's though; a close friend's son has Asperger's, and I've watched her try to help him navigate the world. Successfully, but it's not been easy.

[Zach]

Hey I appreciate the sympathy, I really do. But you make it sound like living an everyday nightmare.

It’s living out of synch with everybody around you and knowing it and not having a clue how to fix that. It’s feeling as though you are from another planet even when you are with the people who know you and love you best. It’s suspecting that you are always missing the point, that you are not quite in on the joke, that there was something that was said you should have paid closer attention to, that you said something you shouldn’t have said but you have no clue what it was or why you shouldn’t have said it. It’s wondering, all the time, “What did I do this time?”

Well, yes.. but you have to remember -- this is not a neurotypcial person who is having this experience. Our reaction to the above is *not* what yours would be. Quite the contrary I have found that a predominance of Aspergers friends are born with an ebuillience and enthusiasm for our one-off perspective that good people find infectious.

Do we worry 'what did I do this time'? For a while, especially when youre very young. It makes grade school agonizing, never doubt that.

It makes us ungodly easy prey for pricks and predators, for a lot of our young adulthood. It can expose us to some horrific social experiences along the way.. more than most people because we are walking targets. I personally have known at least four genuine sociopaths up close, which I hope you have not and would absolutely not wish on anyone.

All of which simultaneously brings out the extraordinary best in people who are *not* predators. We get blessed to witness the astonishing capacities for generosity and grace in friends and ordinary strangers which better-protected people dont need.. and rarely get to see. Aspergers people take more sheltering as young adults, no question, but in a good outcome we grow up happy as hell. I wouldnt trade it : I can intuit things you can't, enjoy things that would bore you crosseyed, exult in solitary pursuits that might derange another man, convince you of things you'd never believe, teach and explain things to you you think youd never understand.

It works for me. Frankly, I dig it. Really. I always have.

[Zach]

LOL ok that sounded pompous. What I mean to say is, the world is a exquisite conflation and amalgam of interacting patterns.. as are the people in it.

This means that an Aspie can and will find amazing beauty and crazy delight in the goofiest aspects of his world, his friends, family and strangers... all the time. Every day. Find it hell, we are awash in it :]

When the spectacular intricacy of patterns and mechanisms are the bassline underwriting your whole world, its pretty cool to get born into a world made up so densely out of them. Theres a lot to like.

Once an Aspie kid starts to see what people's emotional and intentional "tells" look like.. people cease to be such a bafflement. Its a matter of learning to use one's powers for good.. for one's own good. Helps when good kids go so out of their way to reach out and rope them in, but the project is manageable.

(Please note that Im not including face-blind AS kids in this. Face blindness is an intensely difficult disability for high functioning autistic people, I have a family member with this. But I have not found that particular deficit to be as common as I think parents worry that it may be, particularly in kids that receive reasonably early intervention.)

In any case parents feel the worst of the pain. I feel like the bigger tragedy of Aspergers is how badly it terrorizes the parents, how helpless and isolated it makes them feel. Terror is exhausting, and parenting is exhausting enough, without despair getting involved. But a young Aspie kid sees the world in a series of emotional primary colors: so when the parents can find the bone deep belief that its going to be ok, really be great -- and celebrate all the cool differentness of that kid they know, the kid absorbs and radiates that back to the world, and other kids will find him a bit odd but not frightening. Its what keeps the doors open.

[Lance]

Not at all, Zach. I appreciate your comments. It's good for me to be reminded. Yesterday morning wasn't a good one for our son and when he has a bad day I have one too. But he bounces back faster than I do. I don't know how he does it. And that's what I was getting at when I was describing what living with Asperger's looks like to me. He amazes me.

[mac macgillicuddy]

Again, this is Tourette's Syndrome, not AS, but I have observed that the effect can be a similar relationship with the world. I learned today, and it's still unconfirmed, that the goalie for the US team in the World Cup (who just a short time ago won their game) is open about having TS. He reportedly doesn't romanticize it, but he doesn't try to hide it, and he evidentally plays well despite it.

[minstrel hussain boy]

i have worked many times with an AS singer. he finds nothing wonderful or cool about his condition, even while recognising that his obsessive practicing and attention to details of performance is one of the things that has allowed him to achieve his level of success.

he has found his niche in the music studios where the anxiety and interactions of live performance don't exist. his list of others, producers and musicians, he works with is limited. i have told him that this is not in and of itself a bad thing at all.

but i mainly see a wonderful voice, that refused to be silenced and found a way to blossom battling daily a condition that requires of him far more than it ever explains.

my heart goes out to all of you, who like lance, are faced with this every day.

[Belvoir]

All I know or can say is that Lance's love for his son is clearly as big as the sky. And his realness about the challenges and frustrations Young Mannion faces are informative for us all.

[Lance]

MBW, Mac, mhb, thanks for the insights.

Belvoir, thank you. Please don't tell my kid, though. He hates it when I get mushy. The crisis of the day was resolved. School's out for the summer and he's feeling pretty good about how the year went. He says it was his best ever.

[actor212]

Wow. Moby's a pretentious little prick, isn't he?

[Donna]

This really hit home. My son was diagnosed with AS at age 6 (he's 17 now) and it has been one long and heavy haul for him and for us, his parents.

I made the transformation from naive trusting parent to hellmommy somewhere around 6th grade, when I learned that the emotionally disturbed placement he'd been in for the past three years was the worst possible placement for him. (We were railroaded into the placement.) In addition, it was at the end of the placement that we found out that the students in the ED class arrived late and left early every day so they wouldn't have to pay for an extra bus.

I keep telling people that for my son, every day is like negotiating a different mine field. He has a map of the mines, but the problem is that it's always the map from the day before. They don't get it. Even the ones who get it don't get it. Don't get me started on the teachers who don't read the freakin' IEP or the ones who handle covert bullying by telling my son "ignore him."

He comes home exhausted from holding it together every day. Only one teacher ever had the sense to call in help from the emotional support staff for a meltdown rather than report him as a disciplinary problem, and of the administrators, one has been fabulous, one okay, and one well-meaning but doesn't think outside the box. It seems as if our district (which probably hasn't been sued enough times) is more concerned with stuffing anAsperger's peg into a neurotypical hole than in helping him succeed.

The Boy is bright, funny, sweet, and talented. He prefers the term "Asper" to "Aspie." He flourishes when there is someone around who takes the time to figure out how to help him do his best. Both he and I think that the world would be a great place if Aspers could be helped to develop their talents rather than learn to pass.

Every day, it breaks my heart just a little bit more, and the idea that it's something one can "put on" to be more interesting or that there's an on-off switch makes my eyes bleed.

[zenemu]

I'm an adult with AS, and life can be quite tricky and confusing, but having said that there are a lot of positives to having Aspergers too.

Aspergers Syndrome presents itself in so many different ways that it is very easy for people to claim the diagnosis these days and Moby wouldn't be the first or last person to cheapen the struggles people go through when living with AS.

[charyl]

Have you ever read Penelope Trunk? She writes mainly about career advice but also writes about Asperger's because, she says, "I have it, my son has it. My dad has it and my ex-husband has it. Many other people in my family have it as well..." http://blog.penelopetrunk.com/asperger-syndrome/

I think she's pretty funny too.

[Ria]

Hey Zach,

I loooooooooooved this part of your post:

LOL ok that sounded pompous. What I mean to say is, the world is a exquisite conflation and amalgam of interacting patterns.. as are the people in it.

This means that an Aspie can and will find amazing beauty and crazy delight in the goofiest aspects of his world, his friends, family and strangers... all the time. Every day. Find it hell, we are awash in it :]

I too have Asperger's and this is my experience of life, every second of every day. It's why I get so upset about the prevailing misunderstanding that 'Asperger's = lack of empathy'. I believe I have hyper-empathy and I'm so highly attuned to people it's a bit like having x-ray vision of other people's emotions and thoughts.

It's only in the last few years that I've begun to realise that I feel emotions more intensely, and more easily, than other people. The finding of 'amazing beauty and crazy delight' in life and living is something I can't stop doing. Even when tears of deep despair and pain are rolling down my face, I'll notice something as obscure as the fibonacci sequence of leaf growth in the plant I'm staring at through my blurred, tearful vision. So even when I'm feeling deep pain, and I mean really feeling it, I can still be moved by the beauty and wonder of nature.

All of that aside though, I know full well this aspect of Lance's post:
Asperger’s is not the worst thing a kid or his parents might have to deal with. But as far as I’ve ever been able to see, Asperger’s kids lead lives of daily frustration, disappointment, self-recrimination, bafflement, and loneliness and it’s amazing to me that an Asperger’s kid can head off to bed at night, knowing what he’s going to face in the morning, cheerfully wishing his parents a goodnight and even more amazing that in the morning he can march himself out the door to school, whistling.

My 5-year-old son has Asperger's and, luckily for both of us, I've known since he was 3. (I knew something was up long, long before that but no doctor or psychiatrist is prepared to make a formal diagnosis at such a young age, except in the case of Autism.) I have consciously parented in a way that pays explicit attention to the social and emotional aspects of life and interacting. But, like Lance, I spend a lot of time 'feeling' for my son and the daily struggle he must face interpreting and navigating the social world around him. He's a wonderful social mimic though and particularly charming with adults, so for good or for bad, his condition often goes unrecognised. But I see the 'work' he does in reading people - the scanning of their faces, deeply scrutinising their facial expressions, and using his intellect, capacity for patterning (systemising) and prior experience to 'hypothesise' what they're feeling. The intensity of this act alone would take it's toll, but repeating the act over a hundred times a day... and more difficult still, working out the socially appropriate response to the emotion... it's a wonder he doesn't simply fall over at the end of every school day with exhaustion. But he doesn't. He comes home with the same enthusiasm for making, creating, questioning and understanding that he leaves with every morning ;-)

I know he has little pangs of hurt and bewilderment that occur through out the day, though. Little comments he makes or questions he asks at bedtime hint at some of the more difficult social aspects of the day. I feel pain for his pain and often find myself grieving for him that he has Asperger's - for the pain that he felt today and the even greater pain to come. But then I have to remind myself of two things. Firstly, all children experience emotional hurt, not just those with Asperger's. I can't protect him from those daily realities but I can help nurture his resiliency by helping him to verbalise and understand his own emotions and needs and those of others. Secondly, I remind myself of one of the greatest gifts of Asperger's. I reflect on the many profoundly insightful and delightfully quirky things my son has said throughout the day, and I find a wondrous joy in his capacity for a qualitatively different way of thinking and experiencing the world.

He may not always be socially correct, but he's already left his unique mark on the world, like so many others with Asperger's.