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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Saturday, May 26, 2007

 

Not Everyone Wants to Be Cured



In Snowcake, Weaver's recent movie where she plays an autistic woman, she comments on finding her "inner autism." In the following article from San Diego, she is interviewed and Neurodiversity.com, Left Brain/Right Brain, Autism Diva and our very own The Autism Acceptance Project, www.taaproject.com are mentioned in the article as important sites in support of autism acceptance. Weaver did the above public service announcement with GRASP.

Last night, I spend time with Dawn Prince Hughes who also presented at The Come To Your Senses Conference in Toronto where I presented the talk you can also see on video from MIT. She thanked me for presenting there, but what was so apparent was the ease of connection between us. This is a person, very much like myself, who understands the frenzy of how we behave socially, with masks and walls, and we both have an incredible need to slow down and really connect. When you are with Dawn, that's what you are feel (if you are willing).

I am really glad to see a celebrity align themselves not with an idea, a cure as it were, but with the people this means so much to. This is, after all, about living.

By James Hebert
UNION-TRIBUNE ARTS WRITER
May 25, 2007


She set out to learn about life with autism, and after a year spent with people across the vast spectrum of that condition, Sigourney Weaver found she hardly needed to step out of her own two shoes.

“What I ended up doing, in retrospect, was finding the autistic person in myself,” says the actress, who plays a middle-aged mom with autism in the new movie “Snow Cake.”

“God knows it's there,” Weaver adds with a deep, warm laugh. “I mean, that's one thing you see very quickly, is we're all on the spectrum. We all have different ways of stabilizing ourselves.”

“Snow Cake,” which opens today at Landmark's Hillcrest Cinemas, arrives at a time of exploding awareness about autism spectrum disorders, the catch-all term for a range of conditions that share (to varying degrees) difficulties in the areas of speech, social interaction and repetitive behaviors.

It also comes as advocates for the autistic – including some autistic people themselves – are raising their voices in a plea for respect and acceptance.

Their message is similar to the point Weaver makes: that autism is part of the continuum of human neurology, not some separate category of existence. That it is, in essence, a difference rather than a disease, although its consequences for those affected and their families can be profound.

It can be a hard point to get across when so many mysteries swirl around the subject, and when the main message the public hears about autism is how common its diagnosis has become. The incidence of autism spectrum disorders among U.S. children is thought to be as high as 1 in 150 now; the ratio has risen in recent years as understanding of what constitutes autism has broadened.

Weaver, whose memorable film roles over the years range from brave space warrior (the “Alien” series) to crusading naturalist (“Gorillas in the Mist”) to monstrous boss (“Working Girl”), says spending time with autistic people in researching “Snow Cake” was eye-opening in ways she couldn't have imagined.

“I thought I knew a lot, but really, I knew less than nothing,” she says. “And I felt so humbled, both by the people I met on the spectrum, and the people who devote themselves to bringing out their talents and successes, and improving their quality of life – parents, friends, teachers.”

One of the most startling things she learned was how variable the condition is; there are as many expressions of autism as there are autistic people, which means there's no single way to address it – therapeutically or artistically.

“Some people have said, 'Well, my relative with autism doesn't have any of these capabilities,' ” Weaver acknowledges, speaking of those who have seen the film. “But this movie is not about autism, and we were not trying to present the (prototypical) autistic person.

“This is about a man who's thrown together with these two different women, and Linda (Weaver's character) happens to be autistic. And he learns from her, as she does from him. I think interaction – for people who don't want interaction – is one of the messages of the film. Which is: It's good for us to mix it up with each other.”

In the film, Linda is able to live on her own and hold a job stocking store shelves. She speaks capably – a struggle for many with autism – but has trouble deciphering the moods and motives of the people around her.

She winds up playing reluctant host to Alex (Alan Rickman), a stranger in whose car Linda's daughter died during a traffic accident. Alex also forms a bond with Maggie, a loner who is Linda's neighbor.

Angela Pell, the British writer who scripted “Snow Cake,” was inspired by her own autistic son, though his story is far different from Linda's.

Nine-year-old Johnny is “at the other extreme of the spectrum,” Pell says. “He doesn't have a huge amount of language. If I went to see 'Snow Cake,' I'd probably come out and say, 'Well, actually, that's nothing like my son.'

“But what I was trying to do is just give a general feel of what it's like to learn to live with and love somebody who's rather extraordinary, really. And there are a few other themes in there, just generally about acceptance, really.”

Pell recalls that when Johnny was first diagnosed, “we had all these leaflets and books showing pictures of children on their own, with tears in their eyes. All these very negative images.”

“And although it was quite challenging with our son to start with, it's not our experience that it's been totally negative. Our son is one of the happiest people I've ever met, and he brings a lot of joy to a lot of people.”

Advocating for acceptance of those who are different might not seem particularly controversial, but “it's quite a minefield, actually,” says Pell. And some of those mines are inscribed with the word “cure.”

Those in what's loosely known as the neurodiversity movement say talk of a cure is insulting and demeaning because it suggests autistic people are broken or damaged or otherwise need to be “fixed.” They also argue that autism is an inextricable part of who the person is and cannot be removed like a bad tooth.

(The movement has a strong Web presence at such sites as Neurodiversity.com, Left Brain/Right Brain, Autism Diva and The Autism Acceptance Project, www.taaproject.com.)

Some also voice concerns that dangling the promise of a cure can make desperate families susceptible to questionable therapies.

Groups that have sprung up to fund research into a possible cure counter that it's cruel not to try to help those with autism – although nothing in the neurodiversity approach argues against taking steps to improve quality of life.

Quite apart from that debate, though, Weaver sees a more simple and basic need for understanding and respect.

“I don't like being in a world where I don't see people with different problems,” she says. “I think it enriches our world, and it hopefully will enrich their world, to be able to come and go without our shrinking in fear and ignorance. Which is all it is.”

8 Comments:

Blogger Joeymom said...

My opinion of Ms. Weaver just skyrocketed. We need some flashy names to support what we are trying to say- autistic people are first and foremost, PEOPLE. A nice TV and billboard blitz would be good, too. Autism Speaks gets all the ads, and so many people believe what is advertised. :P

1:19 PM  
Blogger mcewen said...

"that autism is part of the continuum of human neurology, not some separate category of existence" - now that is something I REALLY like.
Cheers

1:53 PM  
Anonymous Ms. Clark said...

The GRASP site says that Weaver paid for the photography, etc for the PSA. That was a nice move on her part. The photo is great. It would be nice if they had a representative person who looks more "stereotypically autistic." It's also unfortunate that GRASP has "Aspeger's" in it's name, though they don't discriminate against any autistic person who wants to join them, from what I understand.

It would be nice to have a glossy ad like that featuring autistics.org.

2:29 PM  
Blogger concerned heart said...

Don't you think that people who are functioning and not suffering with "autism" should have a separate name like neurodiverse and leave the term autism to those who cannot talk, cannot enjoy anything, suffer endless torment?
I think there should be a movement to dump the term autism to describe people who have joy the way they are. Just because the writers of the DSM IV lumped the terms together to confuse people we do not have to accept it. Autism of any kind cannot be cured. But we can discriminate about what we are talking about. I hope this make some sense.

1:07 PM  
Blogger Estee Klar-Wolfond said...

Yes, it makes sense. But I'm not so sure this is the only issue. It is an issue about how we view disabled people in society. We want to merge help with respect -- always. So often, we hear others assume that a person who has difficulty functioning is "not aware," or has the "mental capacity of an infant." What we are learning is that this is not the case, and that our attitudes reflect also how we treat and regard others.

We have to stay away from putting a value system on human beings. We have to embrace the fact that people need support and that some deserve to be here even if they need it. We put much to great a value on so-called "independence," instead of redefining what "quality of life" means.

I know sentiments are not universal by every disabled person. Yet, we all know that there is a great deal of discrimination going on with our disabled and autistic communities -- this idea that if you have more difficulty functioning that the rest of us have a right to decide your fate -- and that usually does not involve respect at all. It is more of a power issue.

Fear is a really powerful thing. When I met with Dawn Prince-Hughes last week I realized I made a bigotted comment -- that I wouldn't want to go into a cage of gorillas. Yet, she has done so. She has spent time and has learned to understand the "gorilla nation." I quickly corrected myself and said, "I suppose we can lose our fear and assumptions if we educate ourselves (in this case about gorillas). In fact, I want to go and visit her and spend time with the gorillas too now.

FEAR is such a powerful emotion. How much does it dictate how we treat others of different races, religions and people with disabilities?

8:04 AM  
Anonymous Suzanne said...

dear concerned heart,
You said, "people who are functioning and not suffering with "autism" should have a separate name like neurodiverse and leave the term autism to those who cannot talk, cannot enjoy anything, suffer endless torment?"
The term and the specific dx that my son has suit him quite well. He is very much "autistic" in his functioning.
I am confused about your statement, because although my 6 year old is non-verbal, and incontinent, he enjoys plenty of things (manual alphabet, a breeze in his face, swinging, snuggling, etc.) and is not at all tormented that I can observe. I mean, he has no GI issues, he smiles, he laughs, he comes to adults for help when he wants it. The torment may come later, as misinformed, and cruel people attack him as if he is not worthy of life. THAT needs addressing!

2:46 PM  
Blogger farmwifetwo said...

Did you see this

http://www.edu.gov.on.ca/extra/eng/ppm/140.html

As one who is not a fan of ABA I had concerns until I continued to read and realized my IEP's already meet their criteria. The PDD Team set them up in the fall 2006.

I expect my VP and FSW already have the info but I forwarded it to them as well.

S.

7:49 PM  
Anonymous Ballastexistenz said...

Fortunately, taking joy in who we are (no matter who we are) is a personal stance, and a political stance, and a possibility for any sort of person (except possibly a depressed one, by definition). What it isn't is a diagnostic category. It speaks volumes that some people want to turn autism into a category of political opinion rather than a category of human variation/disability/etc.

10:54 AM  

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