Archive for June 22nd, 2010

I confess.  It was late in the workday, and I was hot and bored.  After checking my email, I followed a link to the Washington Post, a paper I normally wouldn’t look at unless I was using it to line the bottom of a birdcage, when I saw this headline:

Neurodiversity rights activist Jonathan Mooney: “You’re not broken”

I knew it was simply a baited hook, but I bit down anyway.

And like a sharp object poked through my lip, I found it irritating.

You wouldn’t know to look at him that Jonathan Mooney is a man with a disability. He is young, handsome, and speaks with an easy style and a confidence that doesn’t reflect early, dire warnings of jail or a life flipping burgers that his early teachers predicted for him. To look at him, you wouldn’t know that he is an energetic advocate for what he calls “a defining rights movement for the 21st century,” the neurodiversity rights movement.

You can read the rest of the article for yourself, but the gist is rather than concentrating on helping kids with autism connect with and conform to the world in which they live, we need to find ways and places where they can continue to be who and what they are without such expectations.  Hence the idea of a “neurodiversity rights movement”.  And hence my irritation.

Now before the more sensitive among you take it upon yourselves to swaddle up in the mantle of self-righteous outrage at how I am about to proceed, be warned:  I have two boys who are autistic.

These young men have been a real blessing in my life, and have helped me to nurture an incomplete sympathy into a more developed sense of empathy than I would have likely ever developed if left to my own devices.  And when I say “autistic”, I am using the generic term which is what I am told is the new proper term.  If we go to older diagnoses, which I tend to consider more precise, they each have Asperger’s Syndrome, which is on the autism spectrum, but is usually a type of high functioning autism which can manifest itself in some interesting behavioral quirks, but doesn’t necessarily make the afflicted person stand apart the way a child with other, more extreme forms of autism can.  In my oldest son, the symptoms have been a propensity toward sensory overload, which used to lead to some alarming meltdowns, an unusual focus on various things, sensitivity to loud noises, very weak fine motor skills, which makes handwriting difficult, and a lack of comprehension of the various social customs that are second nature to other people, such as knowing that you face front in an elevator, or knowing about and respecting the idea of personal space. 

In my younger son, the symptoms are marked by inappropriately loud reactions, which correlate to his frustration levels, walking on his toes rather than his feet, a deep shyness around people he doesn’t know well, sensitivity to loud noises, and an expanded sense of anxiety around people, which can cause him to “flap” his hands.

While I can echo Mr. Mooney’s sentiment—they are not broken—nor are they normal. 

I want them to reach their fullest potential.  I already know that they are smart.  The oldest one’s vocabulary alone far exceeds the 5th graders he shares a classroom with, and his little brother was reading when he was three.  Their intellect doesn’t worry me.  And the help that the oldest has gotten has helped considerably with his social skills.  he hasn’t had a “meltdown” in 3 years, and you might have to talk to him for a few minutes before you might start to realize that he doesn’t really see the world quite the same way as everyone else.  And I am glad for that.

Humans are the only creatures on the planet who figure that other like creatures owe them a certain deference because of their condition, and we in this country take that one step further by passing laws that purport to confer “rights” in order to make people conform to these expectations.  This is, of course, silly.  If you have to rely on the activity of government in order to confer a right, than it isn’t a “right” at all, it is merely a mandate for deference, and mandates can be changed on a whim.

I want my children to grow up to be happy and fulfilled.  Every parent who cares wants that for their kid.  However, I don’t think that learning to meet society’s minimum expectations hampers that ability.  I know my kids are capable of doing that.  I watch as it happens more and more as they grow older.  It hasn’t changed who they are.   It hasn’t destroyed their way of looking at the world, but they have gotten more adept at dealing with it. 

I realize that this isn’t an option for every kid with autism.  I realize that for some, no amount of training will enable them to interact in a regular and normal way with the world around them, and those who love them.  For them, others may always be their conduit to the outside world.  I remain unconvinced that special rights are the answer for supplying those people with the respect that they deserve as human beings, or that such a grant really is to the benefit of society. 

It comes down to a very simple truth.  The touch of God is present in everything and in everyone who surrounds us.  If we are created in his image, then we owe that respect to each other.  It it sometimes difficult to maintain, as some people sully or misuse the gifts they have been given, but it is this recognition which is sometimes lacking for which a mandate creates a very poor substitute.  Anyone who spends time with an autistic child understands that whatever the behaviors might be, there is still a dignity there, and that dignity sometimes drives them to achievements that teachers and parents don’t think are possible. 

I want my boys to be who they are.  I want the world to know that their hearts are so much better than my own.  And I want them to be able to make their own way.  That doesn’t happen in a world that has to accommodate them, and they would never know if their achievements would be the same without the deference. 

You keep your “rights”.  I’ll keep them learning, working, and growing in their understanding and ability to deal with the world around them.

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