Concrete (part two of three)

“It seems that for success in science or art, a dash of Autism is essential.  For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to re-think a subject with originality so as to create in new untrodden ways, with all abilities canalised into the one specialty.”

Hans Asperger

It’s important for me to say that I really quite admire my brother.  He has a lot of ingenious abilities (like breaking and entering:).  And one of the results of watching his Autism (undiagnosed, although my dad’s working on that again now), over the years, is that I’ve been quite privileged to suspect that my own children with Autism, in spite of peoples’ tendency to underestimate their abilities, are actually quite smart.

A doctor once told my mom that he couldn’t figure out why my brother didn’t have the physical characteristics of mental retardation.  “Ummm,” she answered, “maybe it’s because he doesn’t have mental retardation.”

Were they just complete idiots thirty years ago?  They couldn’t recognize Autism even when they were staring straight at it?  Sometimes this makes me so mad that I think my head might explode.  Because at the same time the doctors were sitting around wondering why my brother didn’t have the physical characteristics of mental retardation, my brother was at home trying to figure out a cure for H.I.V.

“You know, Jessie?” my brother said to me (he was about ten years old at the time), “H.I.V. multiplies itself in the blood, making lots of little viruses.  That’s why they can’t isolate and destroy it once it’s in the blood stream.”

He’d been obsessed with this for awhile already, but I stopped whatever it was that I was doing and listened to him anyway.   

“Viruses can’t survive freezing temperatures though,” he continued, “I wonder if they could do a surgery in which they pull all of the blood out of a person’s body, freeze it, then warm it up and put it back into the person again.  That would kill all the little viruses.”

I, who had probably spent the morning trying to figure out what to wear to school the next day, thought that this sounded rather important, so we went and explained my brother’s idea to my parents.  My parents explained to us that H.I.V. infiltrates all of the body, however, not just the blood.  “Good thinking, though!” my mom said to my brother (who then spent the next two weeks trying to figure out how to freeze a whole person without actually killing them, before finally giving up).

Later that year, my mom saw something on the news about how someone had contracted H.I.V. via a blood transfusion.  Blood banks, as a result, were stepping up measures to make sure that all collected blood was frozen before it was used.  My mom came back to my brother after this and told him that his idea was very good.  “They actually do freeze blood in order to kill all the little viruses!” she said.

In spite of the holes in my brother’s knowledge, I think that he had a fairly good understanding of H.I.V. for his age.  The part that’s always bothered me, however, is that he was flunking his science class, which was where he was learning about viruses in the first place, at the time.  It seemed like he was always flunking his classes, in fact, in spite of his sometimes ingenues little mind.  And this was always very confusing to me.  I eventually grew to realize, however, that it’s not that the information wasn’t getting in.  He just couldn’t always get it back out in the ways that could bring good grades.

My son, Cale, is another example.  Cale is six and a half years old now and is still actually non-verbal.  The doctors have always told me that he is the developmental equivalent of an eighteen month old, but I have often suspected that he understands more than people think he does.  He just can’t talk. 

I’ve chosen to believe that this is the result of a disconnect in Cale’s “wiring” rather than a result of his intelligence.  And this disconnect seems to be in the area of his brain that deals with communication in general.  In other words, there’s more to it than the “not talking.”  His brain doesn’t seem to tell his brain to initiate communication at all, in any way.  That particular “wire” appears to be severed.

Not only has Cale not learned how to talk, but, until recently, he hadn’t learned how to communicate in any way other than smiling or screaming and crying (like he did in order to get his needs met as a baby), in spite of a countless number of hours of intensive behavior therapy (giving him lots of “motivation” to initiate communication), and in spite of nearly constant attempts to teach him how to use words, pictures, and sign language.

I have driven myself absolutely wild, at times, trying to force communication solutions for Cale.  And not only had nothing ever worked, but I had honestly given up hope of ever finding a form of communication that he’d able to use successfully.  I had come to accept that we’d have an intelligent child, who couldn’t communicate, with all of the accompanying frustration and harmful behavior that results, forever.  Just recently, however, the state of Montana (God bless you people) bought Cale an iPad. 

We’ve put photographs of all of Cale’s favorite items and activities on this iPad, and all he has to do is push the picture (push which item or activity he wants) and the iPad says the words for him.  “I want bacon,” it says, in a mechanical little voice.  

I have to admit that I was skeptical at first.  In fact, I didn’t get my hopes up about it at all.  And it did take him quite a little while to catch on.  “Honestly son,” I’d say, tamping my hope back down into my stomach where it apparently belonged, “All you have to do is push the damn button.”

He didn’t get it.  For awhile, I pushed his finger into the pictures myself.  Then I gave him whatever item or activity I’d made him push.  Cale’s speech therapist worked on this with him a whole bunch as well.  And one day, to my surprise, the tips of the severed wire seemed to actually touch.  Cale pushed a picture on his own.

Now Cale laughs out loud every time he pushes a picture of what he wants and the iPad says the words for him (and if we could just get his little head to stop twitching in the process, we’d be in good shape:).  He’s able to communicate whether he wants apple juice or grape juice, for example.  He’d never had a way to make choices before.  He’d only ever been able to pull me to the fridge and cry and hope that the juice of choice was in there.  Now he’s able to specify grape juice, whether it’s in the fridge or not, and I’m able find grape juice (even if I have to go to the store to get it).

Words, themselves, are bringing Cale what he wants now – what he wants specifically.  Just a couple of weeks ago, in fact, Cale started pulling my arm and I thought that he wanted to take a bath (he hadn’t had one yet, and he likes to have one every day after school).  We decided to give him the iPad, though, just for practice, and he pushed, “Circle sausages.” 

“Circle sausages” are what we call turkey kielbasa.  We didn’t realize that Cale particularly liked “circle sausages,” but Shane went ahead and made him some anyway.  Cale giggled the whole time that he was eating them too, like this was the single best thing that had ever happened to him.  And I would’ve put him into the bath tub and wondered why on earth he was crying. 

Then, just a few days ago, Cale started pulling my arm.  I was feeling lazy and didn’t particularly want to get up, so I said, “No, no Sweetie, Mama’s busy.”

He went away.  A couple minutes later, he came back and started pulling my arm again.  I gave him the same response, so he went away again.  A few minutes after that, he came back with the iPad.  He had gone and stolen it from Alden, who had been playing a game on it. 

Cale thrust the iPad onto my lap, pulled up the screen with all of his pictures on it (all by himself, which is a several step process when it’s in the middle of a game), and pushed on the picture of himself in the bathtub.  “Take a bath,” it said, in it’s eerily Stephen Hawking-ish voice.

That’s when it really hit me, I think.  I cried all the way to the bath tub.

Even if Cale never learns how to actually talk, he’ll always, at the very least, have this form of communication.  And now that he’s initiating communication with some things, I’m having my suspicions confirmed that he really does understand a lot, maybe even as much as any other six and a half year old.  Now I can tell the doctor that compares him to an eighteen month old to shove it.  

We’re expanding our “picture vocabulary” on the iPad already (I’m currently trying to figure out how to photograph physical sensations so that he can tell me how he feels on his medications), and I have no doubt, now, that Cale might even be able to learn how to type some day.  I had always thought that he was in there somewhere.  Now he can work on getting out.  

I’m currently reading a book called The Complete Guide to Asperger’s Syndrome by Tony Attwood.  Tony Attwood is a clinical psychologist with over twenty five years experience in working with people with Asperger’s Syndrome.  And he has a positive approach, I think.  Whenever he has to tell somebody that they have Asperger’s, this is what he says:

 

“I usually say, ‘Congratulations, you have Asperger’s syndrome,’ and explain that this means he or she is not mad, bad or defective, but has a different way of thinking.” 

He discusses how some of the person’s strong suits are probably actually due to the person having Asperger’s syndrome, and he goes on to list examples of the sometimes savant like traits that occur alongside the difficulties associated with the syndrome.  He uses a brilliant metaphor actually.  He says to imagine the developing brain as a clearing in a forest, with different brain functions represented by emerging trees. 

He says that if the “tree” associated with “social reasoning” doesn’t develop first and become dominant, thereby actually restricting the growth of competing trees, that the other “trees” (or abilities) may become stronger.  In that case, there’s not only a potential for highly developed abilities, but these abilities might not ever be overshadowed by “social reasoning.”

I had somebody ask me, one time, what the difference between a psychopath and somebody with Asperger’s is.  I mean, both struggle with empathy, right?  It’s a silly question, in my opinion.  But here’s what Tony Attwood says about it, “A psychopath usually has a superficial charm and a previous history of ingenious and intuitive ways of exploiting and manipulating others.  They are the ultimate human predators.  The person with Asperger’s syndrome is socially naïve and immature, and usually at the opposite end of the predator-prey spectrum.  Both have problems with empathy, but for different reasons.”

I would also argue that psychopaths probably aren’t capable of (or have no interest in) developing empathy, whereas people with Asperger’s are, and absolutely do, throughout the course of their lives.  Just because the “tree” associated with “social reasoning” is underdeveloped compared to the other “trees” (or abilities), doesn’t mean that it’s not there.  It might actually even grow to be quite healthy.

If you want to see kind of a good (although quite sensational), Hollywood portrayal of someone with Asperger’s going up against a psychopath, see Girl With The Dragon Tattoo.  The author of these novels gives the main character (Lisbeth) Asperger’s syndrome and a very traumatic childhood, which is why (as he explains in the third novel in a conversation between Lisbeth’s old guardian and Mikael) the label of “Asperger’s syndrome,” alone, doesn’t explain everything about her (not that it does anyone else either).   

The author did his home work on this one, I think.  In fact, I even have to wonder if the author has Asperger’s himself.  I say this not only because of his apparent insight into the syndrome, but also because of the complexity of these stories.  The first two novels were actually quite readable, but did you read the third one?  Shit!  I’m a person that can usually analyze a story to death, right in my own head, and never forget the details of it (my husband likes to tell me that I can analyze the fun right out of anything), yet even I had to make a hand written flow chart of characters and associations in order to get through the third novel.   

The author gives us a few of the more common, possible idiosyncrasies of someone with Asperger’s in Lisbeth’s character (the stiffness of her body, the lack of sustained eye contact with strangers, the way that she eats, and the way that she prefers not to be in certain kinds of clothing, etc.).  And while we can see the alleged Asperger’s in Lisbeth’s “special abilities” (her photographic memory and computer skills), we can also see it (along with the effects of a traumatic childhood) in every one of her social interactions throughout the story (which is the interesting stuff to me). 

Compare her reaction to being victimized, for example, to the much more classic victim response of Harriett Vanger.  And, when you finally figure out who the psychopath is, do compare the psychopath’s social intelligence to Lisbeth’s (I didn’t know who the psychopath was until they actually solved the case, but I had Lisbeth pegged as Asperger’s the moment we met her). 

In addition to the more conspicuous comparisons, pay attention to Lisbeth’s social idiosyncrasies in relationship to the idiosyncrasies of the less intense characters.  Take one of the components of Lisbeth’s relationship with the journalist, Mikael, for example. 

One of the subtle realities of Mikael’s personality, I think, is that he has boundary issues with women.  I don’t think that he’s a womanizer in the traditional sense (in other words, I don’t think that he intends to hurt women).  His relationships with women just tend to be complicated, or real simple, depending on which way you want to look it.  And I think this is partly because he’s actually unsure, at times, about his own boundaries.

Maybe a better way of putting it is that Mikael’s boundaries seem to be movable (the women reading are probably saying, “Yeah, I’ve known a few men with ‘movable’ boundaries in my day too.”).  But I think that what the author is actually trying to portray, in Mikael’s character, is someone who loves women in general (which I suppose doesn’t come without it’s flaws).  So Mikael isn’t as firm in setting boundaries with women as he is with men.  And people with Asperger’s are notorious for pushing, and sometimes not even recognizing, boundaries, especially when the other person isn’t crystal clear about what they are and quite firm in the setting of them.    

There are repeated demonstrations of this between the two characters (besides the sex), the smaller power struggles ranging from her smoking inside to her getting into his computer right in front of him, etc., and the most conspicuous of which happening when she asks him for nearly all of what’s left of his life savings. 

Now, because Lisbeth doesn’t know what it’s like to have “boundary issues” with anybody (you’re cringing right now if you’ve seen the movie, because not only does she know precisely what her own boundaries are, she’s also extremely firm in the setting of them) she has no way of knowing that this is what might be going on with Mikael.  Instead she interprets his lack of setting boundaries with her to mean that he really likes her (which he does, loves her even, it’s just not quite in the way that she would like).  It’s an absolutely brilliant combination of main characters, in my opinion, without which the story really couldn’t have unfolded the way that it does. 

If you do see the movie, I would also encourage you to pay attention to Lisbeth’s motives in general (the things that seem to motivate her).  She’s intensely loyal to a few, yet fairly indifferent to everyone else.  There’s serious integrity in her adherence to right and wrong (even though she has her own ideas about “right” and “wrong”).  And there’s a childlike pureness of heart about her, in spite of the sometimes violent idiosyncrasies in her “social reasoning.”  It’s a very good movie, but it’s definitely not for the faint of heart.  In fact, don’t think that you can enjoy a bucket of popcorn, at all, while you’re watching it.

Well, that was an interesting tangent.  Oh my GOD, I can analyze the fun right out of anything.  Oh well, at least I’m writing.  Where was I?  Oh yeah.

“The brain is wired differently, not defectively,” Mr. Attwood says about Asperger’s syndrome, “The person prioritizes the pursuit of knowledge, perfection, truth, and the understanding of the physical world above feelings and interpersonal experiences.  This can lead to valued talents but also vulnerabilities in the social world, and will affect self-esteem.”

While I was helping my daughter get ready for bed last night, I heard her whispering to herself, “I’m stupid, stupid, stupid, stupid.”

Sometimes this kind of stuff just shreds my guts.  I actually held back tears as I said to her, “Don’t say, ‘stupid, stupid,’ Sweetie.  Say ‘I’m smart, smart, smart, smart.’”

“But Alden says I’m Autistic,” she said. 

“You’re one of the smartest little girls in the whole, wide world,” I said, “And do you know why?  It’s probably, at least in part, because you’re Autistic.  You’re gonna be able to do anything you want in life.  I know it.”

“Really?” she said, “Can I stay up?”

“Okay, almost anything,” I smiled.