Sunday, December 6, 2009

My ADD Smacks of Aspie

As I mentioned in the first blog, I have what the medical and educational professionals like to call Attention Deficit Disorder. In my experiences with Asperger’s Syndrome, I have learned that there is an excellent chance that I am actually a borderline Aspie (someone with Asperger’s Syndrome) – either that, or they are simply so much more evolved than the rest of humanity that I am just chugging their kool-aid, and loving every gulp.

There are a few enormously destructive misconceptions out there about these (apparently VERY misunderstood) conditions, and where better to discuss them than on my own personal blog?

With ADD, the problems begin with the name. I have no issue with “attention”. It is certainly appropriate to specify where our differences are – in our relationships with our attention spans.

Deficit? Please. As anyone who has ever lived or worked with ADD can attest, we do NOT lack the ability to hold our attention on a subject matter. Why, how many times have any of us heard, when speaking in reference to someone with ADD, the cry of frustration “S/HE SURE HAS AN ATTENTION SPAN WHEN IT’S SOMETHING S/HE WANTS TO DO!!!!” Speaking for myself, if I am truly engaged in an activity, I can go hours without any interruptions beyond potty breaks. AND I can maintain this focus for days/weeks on end.

So it’s not that I lack an attention span, or that it’s in any way deficient – I simply lack the ability to control it.

Now, I can understand why those without ADD can see this as a disorder. It is nothing more or less than human nature for a majority to look at the people who don’t fit in as the ones with the “disorders” – with the problems. However, human nature is also responsible for lots of other nasty behaviors – cliques, sexism, xenophobia – I say let’s not trust it.

In my first blog, I also shared that my older son has autism. Pervasive Developmental Delay (or Disorder, depending on who you ask) along the autistic spectrum. Whoa…..there’s that word again – DISORDER. Okay. I will concede that living with Kermit is not simple. There are many things we have to do differently from “normal” families (if any such family exists) – and there is little to no chance that he will ever live what mainstream America calls a “normal” life. When I first digested the diagnosis, I too was on board with our culture’s drive to “cure” autism. To teach Kermit and all the other kids like him how to overcome their “disability” so they can be happy “normal” adults.

I absolutely LOVE the line from the movie Practical Magic – in a conversation where Sandra Bullock’s character bemoans her lack of a “normal” life, her aunt swiftly retorts:

“My darling girl, when are you going to understand that being normal is not necessarily a virtue? It rather denotes a lack of courage!” (Stockard Channing, as Aunt Frances)

In the last several decades, our culture has enthusiastically embraced the notion that diversity should be revered. That we should not discriminate based on age, race, sex, etc.. So, out of morbid curiosity, who gave the get out of jail free card to all of us by letting folks believe that “normal” is good and ADD/autistic is bad?

I’d like to stop my rant for a moment. Yes, let us pause for a compassion break. Raising and living with autistic/ADD people is a lifestyle for which very VERY few people prepare. When a couple finds out they’re pregnant, their hearts and minds fast forward to Fisher Price commercials, diapers, midnight feedings, stressful vacations at Disney World, watching their babies become hopeful ballerinas and little leaguers…and watching those children hit puberty, date, dance, fall in love, go to school, get jobs (jobs like mom and dad have?), get married, have kids of their own. This is a wonderful, magical, stressful, crazy, expensive process – as primal and natural to the human condition as breathing and eating. It’s right there, in our DNA, to switch from single life gear into a life where one’s entire existence revolves around the prospect of raising this beautiful child into the best, most successful adult possible. An adult who can enter this big bad nasty world of ours and kick ass while taking names. And we're going to look damn good while doing it, too.

When this (no less beautiful) child is diagnosed with a disorder of this magnitude, (ADD is bad enough, but AUTISM??) the parents have to give up the above picture for a future that pigeonholes that amazing baby as either future hooligan or a wannabe Rainman. What rational, loving parent would NOT scream “OH. FUCK. THAT.” in the face of that kind of death sentence?

Because yes, getting the diagnosis is a kind of death sentence. That first picture is GONE. To keep one’s sanity, one has to grieve for that loss. Some parents grieve by giving up on their child and some by becoming obsessed with “curing” or “saving” their child. So far, in my travels, I have met very, very few parents who have considered the idea that ADD/Autism is a gift. I know that may sound crazy – but I now refer you to the title of my first blog – I’m not crazy, just terribly, terribly unique. Try to hang on for a few more paragraphs – I do make a very solid point. Honest.

As a child, I was miserably awkward in social settings with my peers. I never understood, let alone enjoyed, picking on the misfit kids. I never understood (and was therefore unable to participate) in kissing up to the girls that “mattered”. The idea of smoking, drinking or having sex to gain social approval made less sense to me than algebra (which, I assure you, I only passed by the grace of God, my angelic tutor Hassan and my brilliant and merciful teacher, the late, great Mrs. Oswalt). I mean, WHO THE HELL DOES THAT?!?!?!

Take a moment now, and imagine how smoothly middle school went for me. (insert appropriately stifled, cynical laughter here)

As an adult, I am still every bit as socially awkward, but I have stopped being miserable about it. Why? Well, here’s the thing.

When I’m actually earning a paycheck, I do so by working with autistic children (mid to high functioning autism and Asperger’s Syndrome). This seemed a natural line of work to enter – since Kermit’s autism had given me years of on the job experience. Like folks with ADD, it is extremely difficult for autistic people to turn their (considerable) powers of concentration onto matters/activities that do not interest them. Therefore, my job as a one to one tutor is to spend my day helping my charge understand why s/he DOES want to do what’s being asked of her/him. With non-verbal students, this generally takes the form of glorified bribery/extortion. Essentially, the child does something because the teacher has made it clear that s/he will very much enjoy what happens after compliance, and will be most frustrated until that compliance occurs. In all honesty, is this any different than regular parenting? But I digress.

With the high functioning (verbal!)/Aspie crowd, it is MUCH more expedient to verbally explain the logic behind the request. Like their non-verbal comrades, this group of (usually VERY intelligent) people are willing to do almost anything – as long as they understand the logical reason behind the request being made of them.

“It is no measure of good health to be well adjusted to a sick society.” - Krishnamurti

Once it became my job to explain the whys behind most of the hoops through which all of our kids are forced to jump, I had a startling revelation. It’s amazing to me how many wacky, uncomfortable, dishonest, illogical, weird behaviors humans are willing to do just because society expects them to do it. Personally, I never ever realized how many stringently enforced social rules are completely, shamelessly useless – if not destructive – behaviors. Pretending to like (unpleasant) people just to get something from them (social acceptance, job promotion, better grades). Ignoring uncomfortable truths (when honesty would save time, money, feelings, aggravation). Pretending to like a job even when the misery that comes from sticking with it causes everything from high blood pressure and ulcers to insomnia and marital problems. Not turning in the kid in your class who’s dealing drugs because…well, hell, I still don’t know why that one even happens.

And it's the ADD/Autism community that has the disorder??

Don’t get me wrong. Teaching these children the skills they actually need to survive – absolutely necessary. But, like the Monkees’ song, Daydream Believer goes, “but how much baby, do we really need?”

To be successful human beings, we need precious little. Air, water, food, shelter, human connections and the means by which we maintain the presence of these things in our lives. Loosely translated to modern American society: a job for the money we need to provide ourselves with the first four, and enough social skills to maintain productive, positive relationships with our coworkers and friends/family. Believe it or not, but the ADD/Aspie/autistic community defines “enough” social skills and “productive, positive” relationships very differently than “normal” people do. Correspondingly, they define “success” and “happiness” along distinctly different lines. People tell me how badly they feel for me for the challenges in my life; this honestly confuses me. I look at their lives, their text book examples of success and happiness, and am deeply thankful that I don’t have to live in their worlds. Ironic, huh?

Yet still, I can relate to their pity or confusion, or whatever it is. Despite a privileged view into autism mentality, I occasionally have a hard time keeping the faith. Fortunately, Kermit is not afraid. All you have to do is meet him to know that he understands his place in the world. He knows how to be a successful human, and he will certainly do it – but in his own way and on his own terms. Who am I as his mother to thwart that? Who are we as a society to tell him (and those like him) that what gives him joy isn’t good enough? Who has the right to define happiness?

Maybe they are here to show us that there is more to life than stereotypical cookie cutter happiness. To help us become as open minded and as free thinking as we already think we are. To help us confront the dishonesty and corruption in our lives that has, hitherto, gone unchallenged.