Friday, April 06, 2007

Autism ala Oprah

I watched Oprah's The Faces of Autism last night, after Fathersvox and Sweet M had gone to sleep. No point in Sweet M seeing it. And Fathersvox doesn't really keep up on the autism news . . . he's of the mind that Sweet M isn't on the spectrum, so at least one of us agreed with some of the things the doctor said on Wednesday. (Don't get me wrong, he was as knocked out by the meeting as I was, but it wasn't the lack of a Dx that had him reeling.)

The thing that I just couldn't get over is how long it's taken Oprah to do this show. I mean really. Autism has been mainstream media fodder for at least four years now . . . cover of Time, cover of Newsweek, bestselling books from Daniel Tammet, Donna Williams, and Temple Grandin. So where has the autism show been? It's a bit puzzling. But better late than never, I suppose.

Like many others, I thought Oprah did an alright job on her two key points — awareness and compassion. The tolerance was a little too much like "putting up with" — it didn't exactly overflow to acceptance. And she did finesse that vaccine debate pretty well. Impressive, but then she's Oprah! That's her special genius . . . reconciling the irreconcilable.

Mostly I was dismayed that all the children who were featured seemed to have quite dramatic classic autism features . . . as others have commented, if this is a spectrum disorder, where was the range? It's that sort of representation that has folks like the doctor we saw this week saying that Sweet M couldn't possibly be autistic because she's not withdrawn enough. The MTV True Life episode two weeks back had a greater range of experiences — though on MTV they left out the girls.

But I loved the dad who said someone asked him if he would love his son more if his son could talk, and he said, No, I love him now. Same here. I couldn't love Sweet M anymore than I already do. As it is my heart is cracking open every day at her tenacity, and determination, and whimsy, and joy.

I have to say that I was weeping when the father was talking about the little house that his family gave up so they could move in with his mother and have more adults on hand to help. It was such a sweet little modest home, and he couldn't even keep that if he wanted to make a place for his kid in the world. That was a sad, sad moment.

But then Oprah had to turn it around, searching for the department of happy endings. I'm always squeamish when we have to go to "the it made me a better person" angle. The lemonade making gets so old. We are all on the lookout for the Department of Silver Linings — how else does one get through the really hard things that happen in life — but the narrative predictability of the "it made me a better person" is just a little tired. I know it's really popular. And sometimes I even like it. But somedays it feels off and old. Is anyone else tired of the "adversity forged me" narrative? Or am I just grouchy because I have yet to get the chocolate antidote to the Dementor attack as advised by MOM-NOS?

Tomorrow, chocolate . . .


kristina said...

I just remembered the father saying that----it struck a deep chord in me, as we've done the same as far as leaving one house for another, though for not exactly the same reasons. But it's something to stand outside the house you thought you'd spend your days in and know you had to say good bye.

Anonymous said...

Kristina, I thought about you and Jim as I was writing this post . . . leaving not only tenured and tenure-track jobs, but leaving at least two houses that I know of. I find it very sad that people have to move far and wide to get what they need for their ASD kids . . . autism migrations. Well, it's not really migration, but I'll be posting about immigration tomorrow . . .

Usethebrains Godgiveyou said...

Maybe, instead of a better world opened up!! I saw things with new eyes.

But Ben has made me a better person...I think having a child makes you a heck of a lot better person, as it is.

"Making the decision to have a child - it's momentous. It is to decide forever to have your heart go walking outside your body." - Elizabeth Stone

Anonymous said...

I agree with you about the "better person" thing. I find it a bit patronizing. Honestly, I was already a good person before I had my son. As far as "becoming a better person," I know lots of people who, by this philosophy, could have made leaps and bounds in their characters by having a child on the spectrum. Oddly enough, their children seem to be fine.

ballastexistenz said...

Oprah has done shows on autism before.

For instance this one.

VAB said...

I didn't see the show, but here is my uneducated guess. They don't have better happy endings to show because being autistic does not end, unless you are hoping for a "cure." What they could have shown is happy outcomes, and all that would involve is picking happy children with happy parents to put on the show (because outcomes are an ongoing affair). But for the moment, when you hunt around for people willing to go on Oprah, it is probably easier for the networks to find unhappy people.

MothersVox said...

Thanks Amanda from Ballastexistenz, for pointing out that Oprah has done segments on autistic people before. It's interesting that on The Faces of Autism show that Oprah herself says she's never done a show on autism before. Maybe she's talking about a whole show, rather than an segment or story? Or maybe she's not making the connection between the children and families she featured this week and the functioning adult that was in the episode you linked us to? Thanks for that link. Very interesting.

And RB and Kokoa's mom, thanks for thinking about this "made me a better person" motif that I have been finding so grating. I guess there are ways that having a child on the spectrum (assuming M is!) has opened my eyes to preconceptions I've had. For example, I can say that I'm pretty sure that I'm a recovering smartie chauvinism. I am certain that I would not have given as much thought to disability studies and neurodiversity as I have since Sweet M's (non)diagnosis.

On the other hand, in many ways I'm not a better person . . . I have less time for my friends, even some who are struggling with terminal illnesses.

I have less time for my work and sometimes think I'm cutting corners (though the happy spin would be that I'm great at "prioritizing").

I'm decidedly unfashionable and out of shape whereas I was once pretty good at what the self-help people call "self-care."

My friends all know -- the ones who are still around -- that I'm not likely to remember their birthdays, get them a card, let alone a gift, or even pick up the tab for drinks because, well, I'm spending most of my attention on my daughter and my work, and almost all of my money on testing, treatment, and educational opportunities.

And we'd have to ask Fathersvox how he thinks I'm doing in the spouse department . . . but I think my marks -- if one were graded on our performance as our children are scored on everything -- would probably be a lot lower than they were several years back.

I am different, to be sure. But better? I guess it would depend who you were asking.

Ange said...

Hi. I am really bad at blog etiquette, but thought I'd let you know that I read this post (and linked to it) and it made me think regarding the "better person" thing. I came to the conclusion that I strive to be a better person. And now that I think about it again, the concept of "better" changes often. (