11/18/2013

The Divide

Suzanne Wright's recent column about three million missing kids (you know, autism) certainly energized the autism community into speaking up about what autism is.

And the reality is that autism doesn't look the same, not even in families where multiple members are on the spectrum. My three, for all that they have in common, also have much that is different.

The good part of all this heated writing going on is that we're talking about autism and what it means in our lives. The bad might be that we're having a hard time listening to others.

As usual. Our vantage point is ours, and sometimes, in our desire to have our realities recognized, we fail to remember that others want the same thing: we want to be seen and heard.

Autism Speaks effectively silenced all those individuals on the spectrum last week. Mrs. Wright wasn't writing as a concerned grandmother, but as the co-founder of the most powerful autism non-profit. She made it seem as if she and her organization had the inside on what autism is and it wasn't about autistic individuals, but about the tragedies that are the lives of people dealing with autistic individuals. It was foolhardy, disrespectful and false.

However false it was, though, it doesn't erase the fact that while one side likes to peddle the autism as tragedy, the other extreme wants to portray it as a gift. Except that's not true, either.

Moderates, middlemen and women, and people who have exposure to the continuum of the spectrum tend not to be hyperbolic. And so they don't get a whole lot of attention.

Autism is a spectrum, both across the population and the individual's lifespan. Bobby is nothing like he was as a child. No one could have predicted just how different he would be. No one can guess just how much more he will learn and grow, either. His story is not written. Neither are my daughters'.

If we really want to help ALL autistics and their families and our society, then we have to be honest and open and accepting that autism comes in many flavors.

If we want society to accept ALL autistics and other disabled individuals as valuable and worthwhile and equal, then we need to treat them that way in our smaller community.

We should be able to reach out and care about everyone and listen to his or her reality, his or her story, and offer compassion, assistance where asked for and needed, and most importantly respect for each person's integrity, whether on the spectrum or off.


3 comments:

kathleen said...

YES!! All people are people! We do need to listen more-there is still too much fighting..and it changes nothing...

chavisory said...

"However false it was, though, it doesn't erase the fact that while one side likes to peddle the autism as tragedy, the other extreme wants to portray it as a gift."

I'm not sure how not to take issue with this characterization...yes, there are people who believe autism to be only a gift, 100% of the time, and never a disability, pain, or nuisance...because there are people who actually believe almost any damned thing you could make up. But MOST of the people (who I know anyway), who regularly get accused of holding or peddling this position, do not.

Yes, this position exists, but it's not just an extreme position; it's an *extreme minority* position. I've started calling it the "high-functioning straw-man."

But what I don't really tend to see--though I don't doubt it exists, because again, everything does--is autistic people fighting each other when some of us say "this part of being autistic is really hard for me," or "I would really like to see treatments or medications developed to address specific symptoms," or "this aspect of autism keeps me from doing things I'd like to do." Or even "you know, sometimes it just sucks." Because those are OUR voices about our lives, not other people presuming that they know what's going on inside of us, and the vast majority of the people whose stuff I read a.) get that people have a right to their own feelings about their own lives and bodies, and b.) have all felt those things, at least some of the time.

The belief that I tend to see the pro-cure faction try to demean and misrepresent as "autism is all sunshine and rainbows" really tends to go more like "for good and for bad, autism is part of us and how we work; you can't take it away and still have a whole person left."

Very rarely do I see that position accurately represented by a non-autistic person trying to cover these issues from an objective viewpoint. It almost doesn't even matter how often we explicitly state "We are not saying that autism is all sunshine and rainbows," and then go on to talk about both the good and the bad...that we really only want autism to be seen as a gift is how we get written off and dismissed, again,
and again,
and again,
and again.

You know the saying "The opposite of love isn't hatred; it's indifference?"

The "other side" to the pro-cure faction is not "autism is always and only a gift," (notice how both of those positions frame autism as something separate from a person?) ...it's "autism is intrinsic to who we are for good and for ill."

K Wombles said...

I don't think we're disagreeing-I said FALSE--I also said it's only held by a few and that most are moderates, and that the few, the loud, the extremist get heard over the moderates who know that autism is a spectrum and comes with both gifts and challenges. I think focusing only on part of one sentence misses the point I was making which is very similar to what you're saying.
I wrote: If we want society to accept ALL autistics and other disabled individuals as valuable and worthwhile and equal, then we need to treat them that way in our smaller community.