Susan's Blog

Sunday, February 11, 2007

I’ve Heard Your Voice, Shut Up Already

Ha! I don’t mean what you are thinking. It sure ain’t Natty’s voice I’m talking about. It’s the Voice of Recovery. Those who are hell-bent on forcing the autism out of their children as if they were exorcists. They chase the cure and stop living. Their entire life’s configuration has become about something being wrong, if-we-can-just-fix-this-life-will-be-okay-once-more. But it isn’t. Life is really messy and unpredictable, and we forget that. Life is like my big weird house, you think you’re buying a Victorian dreamhome and you end up running around worrying about what’s going to break next. Or you enjoy its quirky beauty and keep decorating anyway. In the end, Camus was right. The point was not curing; it was about helping. You have to keep making the life you are handed the best it can be, despite the fact that rats may be dying all around you. Despite the hounds of hell being unleashed now and then.

My own personal demons are about my own career as a writer, as someone who started writing an autism book because I wanted to educate the world about a family like ours and basically tell everyone that it’s not what you think. Don’t pity us. We are fine. Our lives can be very hard because of things that happen with Nat, but also because of things that happen with any of us. If it’s not wiring, it’s plumbing. But it seems like the general public doesn’t buy that. They want miracle stories, they want tragedy and pathos. And they want magic bullets.

Sure enough, every time I look at the Amazon rankings, Let Me Hear Your Voice is always way up there, way ahead of mine. Recovery autism books always do so well. My philosophy is not about recovery, unless you have the flu or some such illness. Autism is not an illness. Autism is not a disease.

In fact, autism can be a gift. This truly amazing item has already traveled around the blogosphere, but it is truly worth another look. Amanda Baggs has put together a fantastic short video on her way of experiencing the world as an autistic person. I watched this, the first part, with her humming and I suppose “stimming” on things, and I found myself feeling at first like, Oh my God this is just like Nat, and I hear this all the time so I don’t really need to watch it. Yes, that is what I thought. I kind of turned away, feeling a little sad and tired of autism.

And then she starts typing, explaining in my language what she experiences as she connects all of her senses with her environment, something I am pretty much unable to do. She also raises the issue that her way of being probably only elicited sad or other negative feelings until you learn that she can use our language, and then suddenly she is a person. Wow. My biases were laid bare. I still have them, I realized, and this video helped me see that. And of course, it makes me wonder about all the amazing things and feelings Nat gets to experience that I do not.

I hear his voice all the time. Now maybe I’ll hear the happiness in it.


I suspect it’s because most people like very obvious ‘happy endings’ and miracles are so much more sexy and appealing, the quick fix and escapism.
It’s a pity that the reality of an entirely different ‘happy ending’ doesn’t make the big time.
Best wishes

— added by Maddy on Sunday, February 11, 2007 at 9:56 am

I totally and completely agree with you. If I hear one more word about “recovery” or “cure” I think my head will explode.

— added by ASDmomNC on Sunday, February 11, 2007 at 10:12 am

And if it’s not plumbing it’s car repair or the furnace.

There I go, projecting again!

Thanks for that video link. I’ve read her blog from time to time and it can get rather wordy and intense for me. The video brings a lot of things home though. It also makes me question things, and ask a lot of ‘why’ but that’s ok too.

This morning I watched my son stand in the bathtob and remove plastic balls from his bath toy bag and drop them on the floor of the tub, then he’d pick one up and place it back in. Drop, place back in. repeat.

Yes, the public does want the magic bullet. They are not intersted in the reality, even if it’s not as sad or tragic as they might think.

I always like your efforts to keep on keeping on.

— added by Someone Said on Sunday, February 11, 2007 at 12:06 pm

Susan, first of all I wanted to say that after reading so many of your posts about Nat, I find him so endearing and special. Your whole family is amazing.

I think Maurice’s book sells more because people buy more books when their kid is first diagnosed, and they are looking for some hope that they’ll be verbal in the future. Your book is probably more sought by people who are in a later stage – acceptance. And this might take many years to achieve, given that the curebie industry is so relentless.

— added by leila on Sunday, February 11, 2007 at 12:14 pm

I saw that video on YouTube a few weeks before it started making the rounds (in fact, I’m scared I sparked it by posting it on my LJ …)

It made me sob until my ribs hurt.

All this time I’ve been telling people that Alena can’t talk. How stupid and blind of me. She can talk, she does it all the time. I just can’t understand Alenaese yet.
*hugs* Thanks for putting this all down. You’ve captured part of the reason my own blog is so silent lately.

— added by Jen on Monday, February 12, 2007 at 2:37 am

McEwen –
I like the way you always end your comments with “cheers,” or “best wishes.” Very pleasant!


Guy: Project anytime.Your comments are always quite interesting, as is your wild and crazy blog.

Leila: thanks!!!!!!!! they are dear to me, too!

Jen: so sorry Alena is sick. Hugs back to you both.

— added by Susan Senator on Monday, February 12, 2007 at 6:57 am

I don’t typically recommend “autism books” to the families I work with (except yours!) I think Catherine Maurice’s book has been around for so long and it continues to get recommended to parents when their child is first diagnosed. I frequently see it listed at the end of the neoropsych evaluations for my students in the “recommended reading” section -along with the one size fits all/cookie cutter type recommendations (I won’t start my rant on that topic!) I was so excited the other day when I received a copy of a report from a hospital in Boston (I want to say Children’s Hospital but I am not positive) the only personal account autism book they recommended-“Making Peace with Autism” by Susan Senator. Yeah!!! The neurologists are making progress!!! This teacher is thrilled!

— added by Erin on Tuesday, February 13, 2007 at 8:46 pm

“Those who are hell-bent on forcing the autism out of their children as if they were exorcists.”

Wow, that’s harsh.

I always viewed it as teaching my child as many skills as he was capable of acquiring. Sure, I put my life aside for many years. It has nothing to do with wanting him to be “perfect” and everything to do with wanting to give him as much as possible in this life.

Why would you be critical of parents taking this path? Or resent that parents be given a book about it? I have a hard time understanding this.

I’m endlessly thankful the Maurice book fell into my hands when my child was young.

— added by Artemisia on Thursday, February 15, 2007 at 12:27 am

I’m glad for you.

— added by Susan Senator on Thursday, February 15, 2007 at 7:03 am

I agree with you that autism doesn’t need to be “cured” but how about prevention? Wouldn’t it be wonderful if the causes (because I’m certain there are several interacting factors that cause autism) could be discovered and no more children had to suffer with the inability to communicate, to initiate to live independent lives?
I say Cure No. Prevent Yes. And as much as possible should be done to help autists like Nat live a richer, fuller life of their own choosing.

— added by Ruth on Friday, May 21, 2010 at 12:21 pm

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