Saturday, October 15, 2005

Autism is a World

I finally saw the Oscar-nominated documentary Autism is a World. It blew me away.

Autism is a World is the story of Sue Rubin, a 26-year-old woman with autism so severe that for many years she was believed to be mentally retarded. She is mostly nonverbal, but through a communication device she is able to type words, sentences, paragraphs that are not only intelligible, but also profound. Through this technology, she communicates her insights about autism, her reflections on being autistic, and her frustrations with having her inner world of thoughts and ideas trapped under a shroud of disability. It supports - by irrefutable living example - the theory that inside every autistic person is a healthy non-autistic person waiting to come out.

I don't think I have a place in my head to file this one. I haven't had enough time to process it. I don't know what it means. And I don't know what to hope for. Do I hope that Bud is aware of his disability - that he has deep thoughts and feelings that he simply can't (but someday might) express? Or do I hope that he is blissfully unaware - that his perky, happy temperament is Bud through-and-through, and that there's no non-autistic Bud ready to be pulled to the surface? It's a tough question to ponder.

I think this is why, as I read through other autism blogs that are out there, I feel so torn between the "biomedical" folks, who subscribe to the DAN protocol and other interventions focused on finding a cure, and the "neurodiversity" folks, who celebrate people with autism just as they are and who focus their energy in trying to break down barriers to create a world that is fair to and accepting of people on the spectrum. There is significant debate between the two camps, much of it mean-spirited and destructive. But there has also been some civil discourse. A couple of months ago, on his blog Injecting Sense, biomedical proponent Wade Rankin got some healthy conversation going and created a few sturdy bridges. Despite that, this week another autism blogger, neurodiversity proponent Kevin Leitch announced on his blog Left Brain/Right Brain that because of the hostility he's encountered he is no longer comfortable posting about his daughter.

Autism is a World is a remarkable documentary, and it provides an important insight into one woman's experience. But I am reminded again, as I am reminded so often, that "if you've met one person with autism, you've met one person with autism." There are no universals in this universe. Autism is a world - one in which we must each thoughtfully, carefully make our way. But as we sort out this world as it relates to our particular person with autism, we must also create a village in which it's safe to raise all our children.


Eileen said...

Like you, I also feel torn between the "biomedical" and "neurodiversity" folks. Like you said though, I have decided that I need to look at my boy as the "one person with Autism" that he is. We embrace the individual that he is, but if there are ways that we can help to bring out his best we will do that also.

Susan Senator said...

This posting and Eileen's comment are right where I am, too. I am on a listserv (Commonbonds@yahoogruoups) that is about all sorts of views, but frequently the biomedical, and I am friends with folks from both camps. It is hard for me to express my honest views all the time about my doubts about the mercury theory, because I know how deeply that camp feels about it. I don't believe that thimersol caused my son's autism because things were "off" from the start. But I truly believe my friends who have found that the dietary detoxification things worked. It's just that it isn't for us. I want to find/create a blog, a place, where these camps are bridged (like this one) and where we lean towards working with the kids we've got and improving their strengths in a diversity of ways. BTW, the link you gave as an example of a bridging blog entry did not work when I clicked on it.

Wade Rankin said...

It's difficult to be so dedicated to a biomedical approach, and yet see that autism is a world so diverse that nobody can claim to have a single answer to the whole problem. Too many of us focus on what makes us "right" without even trying too understand that maybe the other person has a point too. There is far too much vitriol on both sides, and yet I have been able to find wisdom in people like Kev. That is not to say that we agree on everything, but we have found a way to focus on things that we have in common. I just don't see any reason that someone who believes in biomedical interventions cannot also support the struggle for the dignity of people with autism.

Anonymous said...

i don't know why this is, but i don't into the rancorous debate so much. i guess it's becaue my life is so small right now, just me, my husband, our son, our little routine and the two little offices we steal away to in order to write and recharge, or the flatscreen to view the most recent netflix once our son is asleep!

all i can say is that my mother instinct propells me to provide whatever i can for my son so he can grow into his potential, something i think mothers everywhere can identify with. in our case, it means investigating food allergies, supplements, play therapies, and perhaps some alternative educational strategies precisely because he is an individual, an individual with ASD and what even IS that other than a unique expression of a unique brain. i think the movement world-wide that would serve humankind most would be one that honors and respects the individual and opens minds and hearts. let's embrace each other, quirks and all, AND blast open the treatment paradigm that says, with this disorder, only this is possible. time and time again, this is proved wrong. what mother wouldn't move toward the thing that might open connections within their child, that might help make connections between their child and the world possible. some people call that desperately trying to CURE their child of some dreaded thing. i call it exploring the possible.

i don't do any of what i do to FIX my son. i do it to allow for him to feel the greatest possible safety in this world. i'm just putting one foot in front of the other over here. i don't have spare energy to debate on something that is crystal clear to me.

kristina said...

Autism is a World is a powerful and necessary film for us all to see. From reading Rubin's writings, I don't so much get the sense that she is a "totally" "normal" person the inside who just needed the right kind of communication device to enable her to get her point across. In the Biklen book about Autism and the Myth of the Person Alone I wrote about (Never Alone), I tried to note how Rubin and the other autistic contributors to the book all explain how they experience the world "differently," not "normally."
Lots more I could write----supporters of facilitated communication have made much of Rubin. And, while I certainly can't speak to everyone who embraces FC, I have spoken to some who do believe that all autism is, is a totally typical inside who just can't communicate and explain.
I think that is incorrect regarding Charlie, and I've tried to write about his unusual, poetic, different and differently beautiful communication.
All you write about Bud--the "wild mood yonder" and the knock knock jokes--show that he, indeed, has a "Bud's eye view of the world" that is unique, and very important, and totally his own. And thank you for writing about it for all of us!

Emmanuel said...

Autistics aren't just normal people who can't express themselves. Autistic bloggers who express themselves very well make that clear. My five year old nephew's very different way of thinking always amazes me.

These kids need to be treated not in order to be totally normal, but so they can function in society and express themselves and their special way of thinking. I guess this approach is somewhere in the middle between neurodiversity and pro-cure (I'm not saying biomedical since that might imply chelation, a thing that seems horrible to me). I say get rid of the "bad" autistic traits (like flapping) that can cause society to shun them, but keep the good traits.

For the neurodiversity folks who will crucify me for wanting to get rid of some traits - it's for their own good, since society is full of prejudice and stereotypes.

Anonymous said...

Emmanuel wrote:

"For the neurodiversity folks who will crucify me for wanting to get rid of some traits - it's for their own good, since society is full of prejudice and stereotypes."

Hmmm, now where did I leave my lumber and nails? I seem to have misplaced them.

Seriously, as a neurodiversity mom, I wasn't offended by your post. All parents, regardless of a child's neurological type, have to strike a balance between the child's self-expression and society's expectations. (No matter how much a kid loves art, she has to learn that she can't finger-paint on the floor.)

Parents also have to teach their children about prejudice, especially if a child is likely to be a victim of it. It's reasonable to tell an autistic child, "If you flap your hands at school, you may be teased and bullied by ignorant people." I would put this in the category of self-protection, in much the same way that racial minority parents tell their children to avoid going into places where violent bigots may attack them.

There's a huge difference, though, between teaching a child about prejudice, which places the blame on the ignorant people who deserve it, and telling a child that he is defective because he is different.

Surely none of us would say to a child, "If you flap your hands, you are bad, wrong, sick, and crazy, and the world would be better off if you didn't exist." And yet, this is the message that society gives our kids, all too often. From the neurodiversity point of view, protecting our kids' well-being has to include challenging the stereotypes.

~ ~ waves hi to MOM-NOS ~ ~

This is a great blog! I particularly enjoy your playful attitude. It's obvious how much you enjoy spending time with your son and making up games to play with him, and I believe that's the way to do the most good for a child!