Susan's Blog

Saturday, March 17, 2012

I blame blame.

Sometime last year I was having an argument with Max, it must have been about some group or another that was slowly but surely eroding our rights. I think I was talking about the creation of Homeland Security, and the laws that allow for government to use their discretion about spying on people. Spying is okay, then suppression of the First Amendment, then suspend Habeus Corpus…”It’s a slippery slope,” I probably said. “That’s what happened in Nuremberg. From Jews having to wear yellow stars to Jews being denied the right to education to Kristallnacht.”

Max said, “As soon as you compare anything to the Holocaust, you automatically lose the argument.” This made me laugh because I realized that I often do that. I remember likening the standardized-testing movement in education to the beginnings of Nazism. People often want to do that, but we are somehow reluctant to pull out this pivotal example, this epitome of evil that many of us see as unique to history. Of course before and since 1939 Germany and Poland there have been similar holocaust-like horrific events in other countries (Bosnia and Sudan, for example) but to me, a Jew, there was something particularly focused and obsessively carried out about The Holocaust that tops ‘em all.

But Max was being light, and pulling some kind of meme-like knowledge out for me, to show me the latest Internet-hip thinking. (I love when he does that.) I wish Max had been around in the 1960′s when Bruno Bettelheim worked his black magic on society and likened autistics to concentration camp victims. And everyone jumped aboard that train without a peep.

I thought of that today because I heard Eustacia Cutler (Temple Grandin’s mother) speak at Advocates in Framingham. Advocates is Nat’s service provider, and the Eustacia Cutler event was just one item out of many that demonstrates their prowess in the field of family advocacy. Anyway, I listened to Cutler and my own synapses were sparking a mile a minute.

Cutler said that because man is a social animal, we are linked to others, we are linked to what they do. Response is validation and it is mutual; therein lies connection. And so, she reasoned, when we interact with our autistic child in our earliest, most clueless days “we are not getting the response we’re used to. We, too, have lost our way.” What she was talking about was that our autistic child’s unexpected or lack of response to us is not just an occurrence that is about them and their inabilties; this is a dynamic, that is now also about us and our inability. We both become lost to the world, in a sense.

The good news, though, is that as Cutler put it, “We are born with an open skull. Our brains grow.” Even genes are “not fixed;” they are susceptible to “external instruction.” She also theorized that “our brains make new circuits when introduced to someone/something. BUT if you are afraid, the new circuits do not happen and in fact you reinforce old points of view.”

Hearing this, one might think she was referring to autism as a rigidity based in fear. But her statement also made me think about certain neurotypicals as the rigid, afraid ones. There were countless times when I felt afraid of Nat, thinking more about what he might do to me (in terms of hurting me, scratching, pinching, etc.) than about how he was my darling son whom I’m here to help. Those were the times when I would be rewarded by the scratching and pinching. My circuits were fixed from my fear, so new information was not lighting me up. I was seeing Nat in the same old, scary way, so he never had a chance.

This dynamic, however, is a far cry from it being my fault that things between Nat and me shut down. The Holocaust was a deadly environment, that was not about inmates being misunderstood by loving captors. Autistic children are not, were not, inmates. That is a mistake so many make, that autistics are “trapped” in their own world. When what is trapped is a communication between people. It isn’t the fault of the kid, which is kind of what many say nowadays when they want to squeeze the autism out of a person and make him normal. And it isn’t the fault of the mother/father, which is what they used to say and what they say nowadays when they say we are bad parents, when they stare smugly.

It is an utter waste of human brilliance and potential to go back and forth about fault and blame. The truest thing Cutler said today was that it should all be about fulfillment. No one is cured, but they can be fulfilled, she said.

In likening the autism family home to the evil, hellish environment of Dachau, Bettelheim automatically lost the argument. It took Rimland, Bauman, Grandin, Cutler and you and me to find a way to win it.

5 comments

“No one is cured, but they can be fulfilled, she said.”

This is an ultimately important thing to motivate me in my parenting. I really enjoyed this post. Lots and lots of thoughts have been milling around and it is SO HELPFUL to read something hopeful. Just this one sentence above is filled with hope.

Thank you!

Dixie

— added by Dixie on Monday, March 19, 2012 at 12:24 pm

[...] There were people there that day who have written about that morning much more eloquently than I can. So when you can, please read HERE.  And HERE. [...]

— added by Hero « Try Defying Gravity on Monday, March 19, 2012 at 9:29 pm

I love what Ms. Cutler said about fulfillment. That’s so true for anyone, whether they’re on or off the spectrum. Thanks for sharing your experiences!

— added by kim mccafferty on Tuesday, March 20, 2012 at 9:32 am

Marvellous thoughts, as usual. As someone who can recall how lives were shattered over the government-induced fear of Communism (usually described as “Godless communism” to really throw a scare into people and divert their attention from what was essentially an economic bugaboo for the good old military industrial complex) I shake my head over how eagerly we surrendered our civil rights in the wake of the 9/11 attacks.
Homeland Security is an Orwellian horror. Government surveillance of our online activity is a real danger to everyone, especially young people who grew up with computers in their kindergarted classrooms. If they venture onto the wrong website, click the wrong link or send a photo that has a sexual connotation to a peer they can be subject to massive feeral charges, held
without bail and labelled perverts and potential child molesters by our friends in the Justice Department. Meanwhile, the danger isn’t publicized and Americans at large believe the press releases about “child porn rings” being broken up, give a sigh of relief, and go back to whatever they were doing, feeling grateful that “the government” is “keeping our children safe.”
Young people like your two younger sons need to know that what they do online is monitored. Every keystroke is being recorded. They can be playing an online game one minute, click onto a link that someone sends them in an email or text message and Bingo! they’re at risk of being swept up in a government sting operation. I know it sounds paranoid but it’s real. It happened to one of my young relatives, a college honors student and IT fan. He didn’t arrange to meet with anyone, no money was involved, he didn’t touch anyone or request that anyone else do so and yet he is charged with being a pedophile for looking at images of adolescent girls online.
It’s a tragedy. And we do nothing, just like the rest of the world did nothing when they came for the Jews.
So there’s a Holocaust analogy for you. Sorry to ramble on, but kids need to know the internet can be a very dangerous place in ways they don’t expect.

— added by Jill on Tuesday, March 20, 2012 at 9:44 am

Jill – You always make me think as well!

— added by Susan Senator on Tuesday, March 20, 2012 at 2:50 pm