Wednesday, April 2, 2014

I'm Miserable, And You?

The phrase "How are you?" makes me deeply uncomfortable. Although I've trained myself to answer in a non-committal way -- having, after decades, finally learned that it's not really a question and it's not supposed to have a genuine answer -- I still have trouble reciprocating as I'm "supposed" to. Every time I make myself say, "Fine, and you?" during a business transaction, I die a little inside. My unconsciously developed preferred method is to deflect with something true and generally acceptable: "How are you?" "Okay... isn't it hot today!"

I was reminded of this today when a poster on Twitter, who's recently suffered a terrible loss, talked about it. What a horrendous sting it is to hear that at a time when you're in great pain, from someone who doesn't really care about the answer and whom you probably wouldn't want to discuss your grief with anyway.

How very fucked up it is that autistic people are trained to behave in socially acceptable ways that are so messed up to begin with. "Welcome to the neurotypical world, now start lying!" I do understand the need for some social lies, but it's perfectly possible to be polite, even friendly, towards someone you have a transaction with without needing that false interaction.

Wednesday, March 26, 2014

This is Brilliant

By lovely synchronicity, I just ran into this video which relates so well to my last two blog posts.

It really confirms my feeling that we were right to cancel ABA, and that losing that huge stresser is probably a big part of why my son is doing so well now.

Tuesday, March 25, 2014

For Their Own Good

I had another thought today about how "Frozen" relates to autism. In the film, Elsa and Anna's parents are obviously very loving and concerned about them. And yet, their love and concern leads them to psychologically abuse both daughters, with resultant trauma for each.

I don't want to point fingers at other parents. No one knows better than I do how hard it is to have so much at stake -- your children's entire future -- and yet have so very little idea of what's the best thing to do or whose advice to trust. I confess here that we stopped vaccinating for years, and if my son had died or been a carrier that caused someone else's death, it would have been all my fault. I'm very lucky not to bear that burden, but I bore the burden of fearing that my child's vaccinations had caused his autism for some time.

Thankfully, science was able to remove that particular burden from me. But it's left us hanging in a lot of other ways. The only "proven" -- and subsequently, the only covered -- therapy is ABA. My son's ABA therapy was a stress nightmare for the entire family, but it still took a long time for us to pull the plug.

Every decision I make for my son is surrounded by fear and uncertainty. Will this help him or make his life worse? Should I be sacrificing his immediate well being for the sake of his future? What is the line between "for his own good" and abuse?

Monday, March 17, 2014

I May or May Not Be Leaving on a Jet Plane

I'm tentatively planning a trip to London with my mom this year. I say tentatively, because I'm not actually sure I can do it -- leave my husband and child behind for 10 days. A few years ago, my husband and I had a week in New York, while my mom babysat. It was the most thrilling, romantic, fun, enjoyable second honeymoon possible, and yet I still cried pretty much daily over how much I missed my son.

My husband takes fairly regular business trips, which I've gotten used to, but the feeling of him being in China was a whole different animal to the feeling of him being in Vancouver or Philadelphia. I felt the distance. I know I will feel the distance even more when I'm the one on another continent.

People don't get this. I have not been able to find a single person I can talk to about it who understands or even takes my feelings seriously. "Oh, you'll be fine," everyone says.

Back when I was an adolescent, I was mocked by teachers for my attachment to my mom. A counselor I saw as a young adult obviously thought it was fucked up. I see it in my son now and think, yes, we do need to help him move away from us and find people outside his family to care about. But I don't judge or blame him for it. It's who he is.

Today I just feel like saying a big fuck you to everyone. This is who I am and there's fuck all I can do about it, even if I wanted to.

Wednesday, February 26, 2014

Progress Happens

My son has been making huge leaps lately in social understanding, expressing himself, and managing his behavior. What miraculous intervention is responsible? Well... none. The combination of getting older and getting his needs met (to the best of our ability, though that sometimes seems to fall woefully short) seems to be working pretty well.

It's not that I'm against interventions, though that's a terrible word when you stop to think about it. Let's say, it's not that I'm against supports, therapies, medications etc. But we've found quite a few of them to be counter-productive. (I'm looking at you, ABA.) It's particularly stressful when a therapist uses rigid methods on him that don't take his needs and individual personality into account.

It's easy for me to become a superstitious pigeon about what is or isn't helping my son, so it's important for me to remember that sometimes progress just happens.

P.S. Since writing this, I've become aware that a lot of the improvement is connected to work he's doing with a new speech therapist at his school. I'm not sure if she's a particularly excellent speech therapist or that he's just in the right place now to work with her, or perhaps both.

Friday, December 27, 2013

Not Frozen

We saw Disney's "Frozen" on Christmas Eve, and I've been haunted by this song ever since.

It's so beautiful -- her stomp creating the ice palace floor, her gossamer ice train shrugging down from her shoulders. And so deliciously complicated -- there's wonder and delight and regret and triumph and defiance and denial all rolled into one.

But mostly, I realize, it's an Autie/Aspie anthem. The utter joy of finally being able to embrace your gifts and be exactly who you are, that's an astonishing vision. And the refusal to admit that it's not enough, and you still need other people? I know that song by heart.

Tuesday, December 17, 2013

Where to Put Our Support?

If you're boycotting Autism Speaks, how do you find alternate charities? Here's one personal account that offers suggestions.

The straight up Autism charities that exemplify Nothing About Us Without Us are actually run by Autistics. These are Autism Women’s Network (AWN) and Autistic Self Advocacy Network (ASAN).  Autism Women’s Network is working hard on getting together some more on-the-ground initiatives, to get money and resources back to the right people who need it. I know this because I am on the board now.  Autistic Self Advocacy Network has created a sea change in the way Autistics are able to see ourselves and come together in action, as well as carve a place for ourselves at policy tables, even at the very highest levels. This has literally changed the world for me and many people I know. I think ASAN is also looking into a grants program. Both of these groups increase our dignity and well-being every day without wasting good people’s money lining greedy pocketbooks or financing harmful ad campaigns or research into preventing us from being born. Both of these groups are bona fide what a charity should be, and growing and doing more every moment of every day with your help.