Asperger’s, Television, and Arthur

Ever since NHL’s diagnosis, I found that I like seeing depictions of Asperger’s on television.  There’s the Parenthood (which I actually don’t watch, but have heard is a great portrayal), Doctor Sheldon Cooper from Big Bang Theory (which never comes out and says that he has Asperger’s since it is a comedy and Sheldon’s actions often elicit laughs, but otherwise makes a great portrayal), and more.

Recently, I had heard that PBS’s Arthur had an episode on Asperger’s Syndrome.  Technically speaking, the episode aired two years ago, but I hadn’t seen it except in a small YouTube segment.  Over the weekend, though, I realized that we have Arthur on Netflix.  Perhaps the episode was there to watch.  I didn’t know the title offhand, but skimming through the long list of episodes (Arthur has been on the air for over 16 years now), I found it.  Season 13, episode 6: When Carl Met George.

The basic plot is simple, George (a moose who likes ventriloquism) is sent to the library to find more glue for his class.  There he meets Carl, a boy who is completing a puzzle, likes trains, and whose mother is getting him apple juice "in a box, not a bottle."  Carl speaks in a bit of a monotone voice, has trouble with expressions ("Maybe we can hang out sometime." "Hang out of what?"), is startled and overwhelmed by unfamiliar objects (such as George’s ventriloquism dummy: a big giraffe), is extremely honest, and who can speak on and on about subjects he loves without noticing or caring whether anyone is listening.

I found this episode extremely interesting.  I found Arthur’s portrayal of Carl to be extremely accurate.  I could see parallels in much of what Carl does and how he acts with NHL.  For example, while Carl might go on and on about trains, NHL has trouble stopping talking about Legos or video games.  He’ll try to give everyone a detailed description of where he is in his current favorite game and every single step he needed to take to get there.  He also has trouble distinguishing when the other person has heard enough or when the conversation is over.  (He’ll often leave the room still talking about his favorite subject – a trait that I used to exhibit and still do from time to time.)

My favorite segment, however, was the "what it is like to have Asperger’s" sequence.  In this, George takes an imaginary trip to another world.  On this world, many things look the same as on Earth, but a lot is different.  People talk very loud for no particular reason, have odd expressions that make perfect sense to them ("good night for a banana fight, right?"), and dress in a matter that we would find extremely funny (but that they see as perfectly normal – thus making George look weird for laughing).  The segment only lasts two minutes, but boils down the challenge of Aspies living in a neurotypical world.

Also interesting is the "real world" segment that comes after "When Carl Met George."  Arthur episodes typically include "And Now a Word from Us Kids", which shows real kids talking about what the animated episode was discussing.  This sequence showed some real kids with Asperger’s and Autism riding horses (as therapy) and in school.  I really liked the closing quote from the teacher:  "People who have minds that work differently are really, really interesting people.  They matter just as much as everyone else."

This might be a bit delayed, but I’d like to thank the creators of PBS and Arthur for such a wonderful episode.  Given that the series tackled Asperger’s so wonderfully, and that it has taken on other big topics, such as cancer, this is definitely a show I will be encouraging my kids to watch.

NOTE: The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.

Altered Plans Equals Turbulence

This weekend, we were supposed to go to my parents’ house.  Living over 3 hours away from them means that I don’t get to see them often and I’ve been looking forward to it.  As the trip approached, various circumstances kept threatening to cancel our trip.  Finally, on the day before we were supposed to leave, B wasn’t feeling good.  She definitely wasn’t up to making the trip.  To make matters worse, another storm was bearing down on my parents’ house.  It looked like, even if I went with the boys, we would be just sitting around my parents’ house for a couple of days.  Reluctantly, I called my parents and they agreed we should reschedule.

Luckily, I took this change of plans completely in stride.  If you define "completely in stride", as "acted as a ‘just me’ and moped about the altered plans."

Those who have dealt with people with Asperger’s know that we can get attached to our plans.  Change them and you risk a melt down.  I didn’t exactly "melt down" on the outside, but I was going nuclear on the inside.  I’ll admit that I was silently blaming B, the Universe, everyone and everything for not caring about me and keeping the plans that I wanted to do.

In my more calm state, I can appreciate that this is *exactly* the sort of thing that NHL screams when plans he holds dear are changed.  This is the sort of thing that we are always working with NHL to help him handle better.  Mind you, I didn’t vocalize any of this.  I’ve long since learned to internalize these thoughts so I don’t hurt anyone when my mind lashes out.  I even snuck upstairs for a bit to have some moping time to myself so any mutterings weren’t overheard and so I could calm myself down.  Still, it’s clear that I need some work on taking my own advice.

In the end, the storm my parents were supposed to have came to our house instead.  (An additional 4 inches at least – probably more.)  It took a day or so, but I calmed down and gained perspective.  I even had a bunch of fun moments with the boys while B recuperated.  (More on that in later posts.)

All in all, it was a fun way to end 2012.  Here’s hoping that 2013 is just as fun (though a bit less turbulence would be appreciated).

Evasive Eyes and Excessive Honesty

Autism_Awareness_RibbonI first noticed that I had a problem looking people in the eyes in high school.  I realized that I was supposed to look people in the eyes when I talked to them, but – for a reason I wouldn’t fully understand until earlier this year – it made me uncomfortable.  I could look someone in the eyes for a minute or two.  Perhaps more if I felt really comfortable with the person and/or subject being discussed.  However, the longer I looked at their eyes, the more uncomfortable I became.

Flash forward to the present day and this is something NHL struggles with.  He will look away from people as they talk to him, sometimes even engaging in completely unrelated activities.  It seems like he’s simply not paying attention, but he is.  If prompted, he can give a full accounting of what he was told.  When he’s the one doing the talking, he rarely will look you in the eyes.  In fact, he’ll often begin a conversation and keep talking "to you" as he leaves the room.  (Something, I must note, that I used to do when I was young.)  It’s as if he completely doesn’t realize that a conversation is over if the two people are no longer near each other.

And he doesn’t.

Kids (and adults) with Asperger’s don’t understand the "rules of social conduct" the way neuro-typical people do.  They can learn, but it can take years of hard work while neuro-typical people, having taken knowledge of the ins and outs of social conduct for granted, look upon them as "weird" and "strange."

Even now, I struggle, though  I’ve developed some coping mechanisms without realizing it.  For example, if I’m talking to a person who is far enough away from me, I fix my eyes on a spot just behind their head.  It appears that I’m looking at their eyes, but instead I’m looking at a lamp or painting.  If I’m too close for that, I’ll focus on their nose or mouth instead.  It’s close enough to the eyes to give the illusion of looking at the person’s eyes, but doesn’t make me as uncomfortable.

Another area that people with Asperger’s struggle with is lying or omission of knowledge.  I can be honest to a fault.  Keeping information from a person or telling them a lie is very stressful to me.  I can do it for small items (for example, if I’m going to surprise B with a birthday present), but for larger items it becomes tricky.

NHL has this problem as well.  If a stranger asks him how his day went, he’ll start a long-winded story about every detail of his day.  Every level of every game played, every second of every movie watched, etc.  All the person was looking for was a "pretty good" with perhaps one concise example.  Instead, they get the whole enchilada.  NHL can’t lie either.  He can (and often will) try, but his attempts at lying are so transparent that they invariably fall flat.

You might think excessive honesty would be a good thing, but it can be very tricky when you find you need to keep something a secret.  Once, while trading in my car and buying a new one, I let slip that the transmission might be going on the old car. I don’t know why I said it and immediately knew I shouldn’t have said it, but the words were already out of my mouth. It wasn’t like we were trying to cheat the dealer.  The transmission was just a theory we had (not a mechanic-diagnosed problem) and the dealer hadn’t asked me about any problems the car might be experiencing.  Still, the information was inside me and it was like it forced its way out without me being able to stop it.  My inability to withhold information most likely negatively affected the trade-in price we were given.

So if you ever meet me or NHL and we talk your ear off about something we’re excited about while looking at something else, please be patient.  We’re not intending to be rude.  We’re just trying to fit into what is often a strange, confusing, and over-whelming neuro-typical world.

NOTE: The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.

Genetic Guilt

DNAYesterday, I revealed that NHL was diagnosed with Asperger’s Syndrome.  In addition, we’re pretty sure that I have Asperger’s as well.  When we figured this out, I found myself questioning everything I did.  Suddenly, I wondered whether I did certain things because of me or because of the Asperger’s.  As I internalized that these were one and the same, another problem presented itself: Guilt.

Asperger’s has a strong genetic component.  If Mom or Dad has Asperger’s, there’s a good chance that Junior will have it too.  NHL is so much like a little version of myself: Socially awkward, prone to babbling on about interests whether or not anyone is listening, has trouble looking people in the eyes, has trouble tossing out a plan and winging it, etc. His Asperger’s Syndrome – for better or worse – comes from me.  Or, to put it the way I began to think about the situation: It’s all my fault.

All those years of not knowing what was going on?  My fault.  The problems he’s had in school?  Because of me.  His future struggles with the neuro-typical world?  Blame me.

Of course, I knew that it wasn’t like I gave him these genes on purpose.  I didn’t sort through my genetic code tossing out some "good genes" to make room for Asperger’s.  This was just the roll of the genetic dice.  There is no blame to place here just like there isn’t any blame assigned to NHL having my blue eyes or JSL having the same chin dimple I have.  Still, a portion of my brain refused to give up the guilt.

As parents, we never want to see our kids come to harm.  If there was a magical button that, while pressed, would ensure that kids would have a perfect life, we would spend the rest of our days leaning heavily on said button.  It hurts us when they feel pain or sorrow.  And if said pain/sorrow is somehow attributable to us?  Even in the most indirect of ways?  Devastating!

I have let go of most of my guilt.  Deep inside I’ll always feel a tiny bit of guilt, but I’ve learned to ignore that voice.  I suppose that overcoming the feelings of guilt was part of coming to terms with the diagnosis.  Now, instead, I focus on how I can best help my son navigate the often confusing Land of the Neuro-Typical.

Have you ever felt guilty about something your kids inherited from you?

Note: The DNA image above was created by netalloy and is available from OpenClipArt.org.

Diagnosis, Asperger’s, NHL and Me

Autism_Awareness_RibbonA few months ago, I mentioned having some big news.  Huge news.  However, I couldn’t share it at the time.  This led to some people wondering what it could be.  Well, after many weeks of keeping quiet about it online, we’re ready to reveal what it is.  But first, some history.

About five years ago, when NHL was only four years old, we wondered about whether something was up with him.  He didn’t seem to fit in socially like the other kids did.  He had trouble if a routine changed.  He would have fears way beyond what is age appropriate.  We went to one doctor after another and kept getting different advice.  Nothing seemed to help, though.

The closest we got to a good diagnosis was that he was gifted (IQ of over 135), but even trying to address his supposed boredom in the classroom didn’t help.  NHL was still yelling in class, cutting up paper, running around the classroom, freaking out whenever his routines changed, and more.  The teacher tried to be patient with him, but she had to teach the other kids as well.  Besides, we feared that he was painting a huge "Bully Me" target on himself with his actions.

Finally, at the end of our rope, we went to a neuro-psychologist.  She went to NHL’s class and, without him knowing, observed him for three and a half hours.  Then, not too much later, NHL met with her one on one for about four hours.  The report she put together from these meetings and observations was long, comprehensive, and difficult to read.  Within its pages, we read of kids moving their desks away from NHL, kids rolling their eyes at him and calling him weirdo, and other socially isolating events.  NHL, with his actions, was doing just what we feared.  He was isolating himself and making himself a target for bullying.

The good thing about the report, though, was that we finally had a diagnosis.  NHL was diagnosed with Anxiety Disorder and Asperger’s Syndrome.

On the anxiety front, his fears would come upon him so fast and so strong that there wasn’t the barest hope of him keeping them in check.  The best I can describe it would be that he pictured the worst possible outcome in his head.  Then, once that outcome was imagined, he would assume it was certain to occur.  Next, he would totally freak out including yelling, stomping, running away, etc.  It didn’t matter if we were at home, if he was in a classroom, or if we were in the middle of a store.  His fears could be based on school work (homework was a half hour scream-fest) or a super-massive black hole destroying humanity.  Thankfully, new strategies have helped him calmed down a lot and we can head off his fears before they turn into full-blown panic attacks.

When it comes to Asperger’s Syndrome, it’s not a "condition NHL has" as much it is "a different way that NHL’s brain works."  NHL loves schedules, order, and routine.  He doesn’t like it when this gets disrupted.  Loud sounds or people getting in his space can make him uncomfortable.  (He’ll cover his ears when entering a public restroom in case the electric hand dryer turns on.)  He has intense likes (Math, computers, superheroes, etc) that he wants to share with everyone whether they like the same things or not.  He can tell you how a person should act in a given social situation, but when theory turns into reality, he has trouble knowing what to do.

In fact, many social interactions are tricky for him to navigate.  In the past, he’s been na├»ve enough to not recognize that his social "awkwardness" was isolating him, but he’s quickly realizing it now.  He’s a kind kid and loves helping and being a friend.  When kids don’t want to be his friend, ignore him, or tease him, he feels hurt and doesn’t know how to express this or remedy the situation.

He’s now getting help learning to cope and deal with social situations.  People with Asperger’s have to learn how to navigate the world at large.  His challenges aren’t as great as those of a child with a more severe form of Autism, but he still needs to learn the rules of the neuro-typical road.

For those who don’t know the phrase, Neuro-typical is the word used to describe people who aren’t on the Autism spectrum.  Never use the word "normal" as it insinuates that someone with Autism is some sort of freak.  We aren’t freaks,  We just have a different way of thinking.

Yes, I did say "we."

in my "I can’t share this yet" post, I said: "This news is so big that it has rattled my very idea of who I am."  You see, as we were reading more and more about Asperger’s, I kept stopping and remarking about how that sounded so much like me.  One example: People with Asperger’s tend to think in an If-Then manner sort of like a computer.  One of the reasons I make such a good computer programmer is that my brain basically works just like a programming language is written!

Growing up, I had a lot of trouble with social situations.  I never felt completely natural in them.  To me, it seemed as though everyone had gotten the Social Situations Complete Guide while I got the Cliff Notes edition.  I wanted to be social, but didn’t quite know how.  I always pictured it as wanting to be in the spotlight, but feeling highly uncomfortable when that happened.

I always figured that I was "socially stunted" by the bullying I went through.  After all, my reaction to being bullied was to withdraw from the world.  The less that I showed to the world, the less the world had to bully me with.  After high school, I tried very hard to tear down those emotional walls and open up.  To this day, though, I still struggle with it.

Maybe my social awkwardness wasn’t a result of bullying, though.  Maybe, it was due to Asperger’s.  Back when I was growing up, Asperger’s wasn’t diagnosed.  I didn’t have the options that we have for NHL to aid him with socializing.  Of course, the bullying didn’t help, but perhaps all these years I had it backwards.  Maybe my social awkwardness was something that the bullies picked up on and used to target me.  Maybe my quest to "be normal socially" was completely misguided because I wasn’t neuro-typical at all.

At first, this saddened me.  Was there an upper ceiling beyond which I couldn’t top no matter how much I tried?  Was all my hard work over all these years for nothing?  Should I just give up and say "Asperger’s" whenever a social situation had me stymied?

For awhile, I wasn’t sure what the answers should be.  Then, I heard someone mention that Asperger’s doesn’t define us.  I can’t give up on growing as a person just because I have Asperger’s.  It will always be a challenge I deal with, but it won’t be the only thing there is about me.  And, with luck, I can use my Asperger’s experience to help NHL avoid some of the pitfalls I fell into.

NOTE: The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.

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