Friday, February 18, 2011

Kick in the Aspergers

Alright, it is funny. The name is funny. In the Jr. High school boy part of my brain where I still giggle every time I drive by a BJ's, I also hear Aspergers and think of the classic hamburger symbol with a bun that is every bit the double entendre the name naturally inspires. Aspergers is a funny name. Yes, we understand that it is named for the Dr. who first chronicled its characteristics - but still, burgers made of ass. Hehehe.

But, as someone who lives everyday in Aspergia, with a husband and a (step) son who have Aspergers, I have gone beyond the giggle and into navigating through the strange, fascinating jungle of Aspergia. This can be an incredibly frustrating place to be. When I first met my Aspergian husband, we were doing a comedy podcast together. Having never dealt with an Aspergian before, I would listen to his criticism and inconsiderate remarks and think What a dick! I know it does not sound like the beginning of a fairytale romance - but, trust me, it ends well. The host of the show and I would sit in the studio making faces at each other when he would speak, occasionally letting it escalate to crude gestures inspired by the trademark Asperger's dickishness. I would wonder What is wrong with him?. Figuring out there was an actual answer to this question changed everything.


The answer, by the way, is nothing. There is nothing wrong with him, but you may need a map to navigate your relationship, and a thick skin to wade past the waters of the vague insults. Aspergia is a tricky place, and the best compass I could offer to someone setting out on an expedition is 100% honesty, with your Aspergian and with yourself. 100%. No exceptions, not even for a moment. Accept everything, take offense at nothing, and understand that in Aspergia there is simply...

no judgement.

Your Aspergian may say something that in any other world, from any other person, may warrant a slap or a drink in the face - but it is best to remember that they are just stating an observation. They may say "There was a grammatical error in your previous sentence and you need to brush your teeth. Seriously. Right now." You could react to this by bursting into tears and thinking he just said I am stupid with bad breath, he is so mean! Or, you could live in the truth and think I did say that incorrectly and I do have some seriously stank breath. Then, you go brush your teeth. And that is it. Don't let it gnaw at you. Don't over think it. Your Aspergain was simply observing, and I know this is a difficult concept to grasp, with no judgement.

There are two things that Aspergians do that we neurotypicals have a really hard time accepting. One is the no-judgement thing. This takes a while to accept. It doesn't really make sense. Aspergians often come across as assertive, expressing opinions that seem bossy, presenting ideas so far out of the box that they don't even acknowledge the box exists - so far out of the box it is as if no box-like container of any kind has ever existed in their world, as if there has been a swirling box-sucking black hole for all time. They express themselves in such a strong and dynamic way that it is easy to confuse this with intolerance and disrespect for any other way of thinking (i.e. yours). It is easy to assume they stand in judgement. But - embrace this wild notion - they do not. They think in such a complex multiple-dimensional array of possibilities that they will sometimes rush as they scan over the millions of exciting possible outcomes. They often do this in bulldozer fashion, sometimes leaving a wake of hurt feelings and confusion. They don't know they are doing this, and they genuinely do not stand in judgement on your original idea, they just heard it, noted it, and moved on to three thousand other ways to think about it. They are not ignoring that kicked puppy look on your face, it simply doesn't blip on their radar. It's completely irrelevant to the discussion of your idea which triggered the bulldozer session. Aspergians are the only people I have ever known who simply listen without judgement. Remembering that, as they trample over you like a bunch of brides-to-be at the one day sale at David's is a good thing.


The second thing we neurotypicals have a hard time understanding is the way our Aspergians instantly accept whatever unholy hell, crazy-ville, flying-ninja-on-fire, zombie attack, frogs-falling-from-the-sky chaos that happens to be unfolding before your eyes. They instantly accept this and step into the new put-out-the-ninjas-and-step-over-the-frogs reality they now live in. They observe the flaming ninja, make a note of it, and move on. They do all of this before the rest of us even realize the street happens to be filled with zombies and frogs, clearly ready to attack. Meanwhile the rest of us are all starting to form the phrase: "But, but... it was just so un-zombie like here only a few minutes ago, uh, what happened?" Since emotional responses are not really their thing, they are not stuck on the idea things are not as they should be; they are not stuck on the idea that is not the way we have always done it, and they are not stuck on the idea that is just not what we do. Aspergians accept the state of things as they are and simply move forward logically. It is like being married to Mr. Spock.

Understanding that nothing you have ever known to be true or polite or even remotely normal exists in Aspergia is a powerful tool for navigating your way. Abandon preconceived notions all ye who enter here. Just go with it and you will be thrilled to be along for the ride; you will think of things differently than you ever would have and have the sensation of visiting a whole new world. If you can open your mind enough it is a wild ride.

Authors note: As I write this, we are preparing to take ourselves and six kids up to Canada. The folder containing all of our documents needed to cross the border has gone missing. I am freaking out and my Aspergian husband is methodically looking for it, while my Aspergian boy is checking the ventilation shafts. This is my life people!

...

OK, they found the folder and we are finally going to get to freaking Canada!

One must pay close attention to the care and feeding of the Aspergian. Because social interaction is like trying to decode the most cryptic, ancient puzzle in the world - it tuckers out your Aspergian. They will tire after having to talk to real people and they will need to recharge by connecting with a computer, or looking at complex data, or drawing little grid things or something - I don't know what they do, but I know they prefer to do it alone. Also, because they are often disconnected, they need you to connect with them - often. They may not realize they need it, but they thrive when you touch them frequently and when you check in to see how they are doing. It is best to just love your Aspergian for exactly who he is, and taking good care of them will follow.

If you are a neurotypical who does not have the good fortune to have an Aspergian as a husband or a son like I do, or have regular contact with one - then your only reference may be from TV. Lots of shows have Aspergian guest apearances, and there are a few with regular characters. The first Aspergian I ever encountered was Jerry on Boston Legal. Jerry was socially awkward and "flapped" the Asperger train of quick, nervous physical ticks that serve to calm Aspergian nerves - but he had lots of other issues so he may not be the best example. He came across as kind of a freak - and not a cute, loveable freak - a real one. Today on TV there are at least three characters I know of with Aspergers. The guy from House does not count - he is just an ass. But Sheldon from Big Bang? Aspergian. They have never mentioned it on the show - but, come on! Before they even knew about Aspergers, my sisters started refering to my husband as Sheldon - it is clear.

The two other examples are Abed from Community and Max from Parenthood. Max is about 9 or 10 and when he is diagnosed with Aspergers his parents are devastated. They panic and put him in a special school and wonder how he will take care of himself when they are gone. They never really seem to bask in his awesomeness - but then, as portrayed on this show, Aspergers is not so awesome. It is just kind of annoying. Max whines and grates on everyone's nerves and we never really see him seeing the world in amazing, cool ways - we just kind of want him to shut up. Abed, on the other hand, is amazing. He has deep, profound insight into everyone he knows and his analysis of the interactions between people and connections he makes to movies and TV are nothing short of brilliant. When Abed learns about Jesus for the first time, he points out "He is like ET, Edward Scissorhands, and Marty McFly combined." Genius. Abed is a joy to watch and deeply interesting to listen to. Abed is Aspergers at its best. The truth is I have never met someone with Aspergers quite as cool as Abed - but then again, I have never met anyone with Aspergers quite as utterly frustrating as Max.

Usually our Aspergians are somewhere in between. And, in my experience they are really hard not to love. At least not after you figure them out a little bit.

I got a comment last week from a loyal follower who said: "If there was a pill that could cure Aspergers, I wouldn't take it." Hells yes. If I were in charge of giving them out, I wouldn't do that either.











UPDATE:

Here is something I love about the TV show Glee; their campaign against bullying and for acceptance of diversity. Here is what I hate about Glee; the 2011 season has started with two shows featuring a girl with Aspergers who shows no actual signs of having Aspergers (difficulty with eye contact, flapping, etc.) but instead uses the word Aspergers to justify her rude and obnoxious behavior. Seriously Glee people? Are you telling me that you have purchased prime time advertising spots to show commercials that raise awareness of the effects of using names like nigger, kike, fag, etc. - but you are throwing around a diagnostic term used for people with a very real condition and doing nothing more than linking it to asshole behavior?

What would the response be if a show had a character that walked through the world obliviously causing harm to people and then just said "Sorry - I am retarded." ?

That would go over well.

Honestly, as if people with a condition pronounced "Ass Burgers" weren't already easy enough prey for ridicule. Could we maybe cut them a little slack? Maybe the writers for Glee are going somewhere productive with this story line, because she did offhandedly mention she was "self diagnosed" - but we should not be wondering about this after two whole episodes.

Glee people - please get it together. This "Sugar" character who shows up and says "I can pretty much say whatever I want" and proceeds to incite anger in the viewers is a really bad idea. It is not cute or funny and unfortunately it introduces confusion into a frequently misunderstood diagnosis. I suppose since you are "self-diagnosed" Glee producers you think you can pretty much say whatever you want - but what you are doing is making your already misguided show sadly unwatchable.

6 comments:

  1. Lovingly written, Mangiacotti-Miller. Lucky lucky family.

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  2. Informative and entertaining! Just like the previous posts. Keep up the great work.

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  3. It takes a rare and special kind of person to see beyond the often blank face of aspergers but you seem to have the gift. Well done!

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  4. Great post. Thanks.

    Sheldon Cooper, great character. He could not exist in reality with that mix of oddities but that is not the point of a fictional character. The aspies and autis I know love him too and think highly of Jim Parsons acting. The rest of the crew gets the same reception, including Penny as the counterpoint.

    During BBT I flap. These are the movements with hands, arms etc many on the spectrum make, ranging from surpressable to obsessive. My BBT portfolio rangs from flapping my hands, applauding, sometimes over my head, standing up and walking or jumping - really, you should see me watch an episode. During over 40 years, especially before I knew I had aspergers and even for a while after that. I though everybody had the urge and normal people just surpressed it. Now I (think) I know it is a way to express emotions, which nicely aligns with the present hypothesis that aspie/auti brains have a different distribution of neurons. This might lead to emotions following a different path through the brain and having them surfacing in different ways. Especially the low neuron count between the brain halves might result in emotions not travelling between them. But I don't have enough knowledge at hand about the workings of the brain halves. I don't know if your aspies do such things but if they do and you can interpret it, you can read what you can't read in their faces. That is, insofar my ideas on this are correct. But there is definitively a connection between emotions and body movement.

    A last thing: aspies indeed approach things differently. That can be good, or not, depending on the how, where and why (I don't support the notion the autism spectrum is the next step in human evolution - there are quite a few people that believe that, most aspies/autist don't think a world with only people like them would be a good idea). If you can combine the forces of the NT's and ASD's you get..... well, look at your own family, that's what you get. Not bad, eh? (you live close enough to Canada for me to get away with 'eh')

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  5. First, this post is amazing. I found it through your (also amazing) Penis Mom post, but I've been wondering lately just how far along I might be on the Aspergers/Autism spectrum, and especially appreciate the TV characters you discuss, because I know those characters and it helps make things make more sense.

    Second, I take the Glee character not as an Aspi but as one of those over-privileged kids who uses neuro-atypicalities (I think I made that word up) like Aspergers and ADHD as an excuse, without actually having one. I do believe that there's a disturbing trend of parents trying to blame the fact that their child isn't a perfect, straight-A student on things like ADHD and Aspergers, which is a problem because it both discredits people who do actually have these diagnoses and it takes resources away from those who need them (in a perfect world, there would be enough such resources to go around, but our world is far from perfect). Anyway, I'm hoping Glee will address this in the spring.

    Also, there was a character on Grey's Anatomy a couple of years back who was on the spectrum (I forget if it was Aspergers or Autism). The characters weren't really sure how to interact with the character, and ended up losing a great doctor because of how they treated her.

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