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Monday, July 16, 2007
All I WantAll I want, as far as "autism advocacy" goes, is awareness.
I don't want to sue the people who vaccinated my kids. I don't want the government to give me lots of money (unless they just have their hearts set on it), because there are autistic kids who need the money more than we do. I don't want people to treat my son more specially than they treat other kids. I just want awareness.
Have you ever heard anyone say, "Ew -- that kid has Mongoloid features and unusual speech patterns, and he isn't as intellectually developed as his peers. What's WRONG with him? He's freaking me out! He's a weirdo! His parents must have totally messed him up somehow! He's creeping me out!"
No, you haven't, unless it was a thirteen-year-old bully, or a really lame stand-up comedian trying to be edgy. And you know why? Because most adults in America know what Down Syndrome is, and they know that people with Down Syndrome can't help having it, so there's no use making fun of them, unless you want to come off like a complete asshole.
Do you ever hear adults in America say "Ew -- that kid acts weird. He's socially stunted. He talks funny, and he's strangely good at math. Do his parents homeschool him or something? I bet he gets beat up in school all the time. I bet he's never gonna have a girlfriend, ever. He's creeping me out. What the hell's wrong with him? He's a freak. His parents must have messed him up somehow"?
Unfortunately, yes, you do. I recently saw it happen on a site that I frequent, in comments regarding a YouTube clip of a young spelling-bee winner who pretty obviously, in my opinion, had Aspergers or autism. And I'm not going to link to those comments here, because the young urbanites making them were obviously trying to be "edgy" by expressing fear/loathing of alternate cultures (i.e., homeschooling Midwesterners), and had no idea how to identify Pervasive Developmental Disorders. I want to believe that these people, had they realized it was a condition the child and his parents couldn't help, would have refrained from commenting on it. Because only a rude dumb ass makes fun of something like that, and some day a real rain will come and wash away all the rude dumb asses. (Right? Hope so.)
When adults meet my Aspergers-having son for the first time, they tend to react to him in one of two ways. Either they completely ignore him, because he inadvertently gives off social cues that discourage them from asking him the same questions they ask my other two kids ("So, how old are you now?" "So, how do you like school?")...
or else, way more rarely, they feel compelled to draw him out. And that's usually because he reminds them of themselves, or of someone else they knew who was quiet, but ultimately intelligent and rewarding to hear.
In either case, I find myself telling everyone I know that Dallas has Aspergers, if/whenever they express curiosity about his behavior. (They say, "Dallas... likes to keep to himself, huh?" or "Dallas is kind of... intense, huh?" or "Dallas reminds me of my uncle, who also preferred drawing complex machines to hanging out at family barbecues.") Why do I tell them, instead of keeping it private?
Not because I'm trying to excuse his behavior, and not because I'm looking for pity. It's because I want to help create awareness. I know that none of my friends would make fun of someone for acting a little different. But maybe, if they come across someone else who would, they can pass on what they know. They can say, "Dude, don't make fun of that guy. He was probably born with Aspergers. Don't be lame."
(Social shaming: the fabric of polite society. :) )
So, yeah. If you know me in real life, and I start giving you an informal presentation on Aspergers, autism, and PDD -- I'm not trying to make you uncomfortable, I promise. I'm just trying to do my part. Until we get a popular actor who outs him/herself as having Aspergers, this awareness thing is strictly viral marketing. Grass roots. Underground. Help me out, okay? Spread the word. 6:00 AM #
Comments:
Gwen, Gwen, Life Goes ON started on TV in 1990. Not in the 70s.Love how you write, Thanks for the site.
# posted by
Tom : 6:12 PM
Oh my god, you are so right.
Funny, my bf told me this morning, "That show was in the early '80s. I remember it." But it started at the very end of 1989, according to IMDb.
I was thinking of an actor with Down Syndrome who was on the Love Boat. Maybe he played Julie's nephew, or stepson? Remember that? *That* was in the '70s, and then I went on to assume that the same person became Corky. I looked that up online, and it's totally incorrect, of course. And I couldn't find any supporting documentation for there being a Down Syndrome peep on Love Boat, either.
So I deleted the whole reference. Thanks for correcting me.
# posted by
Gwen : 8:40 PM
I watched the Spelling Bee and I think that at least 3 probably 4 of the finalists had Asperger's Syndrome. The clever and funny winner in particular.
I have a son with Aspergers leanings and a daughter who is profoundly autistic. People who rudely stare are harder for me to deal with than people who make rude comments. Because more than once I've been able to respond to rudeness/bad manners with: "She's autistic, what's your excuse?"
Anyway, yea for the awareness.
# posted by
: 10:49 PM
Unfortunately the most prominent autistic's celebrity parents are Scientologists and refuse to admit their son needs help.
Way to be there, Travolta...
# posted by
: 8:19 AM
One of Sylvester Stallone's sons has autism, and he's been open about it in the past. The problem with celebrities is that they rightly need to protect their kids from the press and the public and I imagine doubly so when they feel there's another reason to protect them.
My mom has a friend who has a daughter with Tourette's. People are very rude and make awful comments about her tics, and her parents have said almost exactly what you said in your post. They just wish there was some real awareness in the public. Gwen, you are awesome for being so up-front about Aspergers and raising some awareness wherever you go. It must get tiring--there are rude, insensitive people everywhere--but it matters.
# posted by
Kaijsa : 9:46 AM
I will do that then. I hope this doesn't sound insensitive but Aspergers is interesting. I would like to learn more about it.
What I tend to think is that the world needs disabled people--we need people with Downs even if we do not realize this because we are so focussed on a narrow range of what matters about people (e.g., having a high powered career, looks, etc.). But we especially might need people with Aspergers because they sometimes have special gifts. Some disabilities are really tragic but some are just part of human diversity. I think more and more people are starting to realize this.
In some ways I guess Aspergers may be different from your standard disability. And it would be nice if there were another word for that kind of difference but I can't think of one.
Maybe if people knew more about brains generally they would be less dumb about things like this. So many different people--different brain types--makes the world an interesting place.
Scientists don't even know very much about brains, come to think of it.
Anyway, I hope we can create a world where people truly revere and respect other human beings in all their uniqueness--and get past their fear of differences.
# posted by
ozma : 12:46 AM
I think it'd be cool if you wrote a picture book about it. You'd do an awesome job.
# posted by
La Brown Girl : 2:03 AM
My whole family thanks you for this post. My nephew has Ausbergers. He is kind, sensitive, brilliant and socially inept. He currently is working full time as a computer programmer with his own apartment and a circle of friends who also enjoy gaming. But it has been a long hard struggle and he still stands out in a crowd as different. He is worth getting to know but it will take a lot of effort on your part. I just wish more people were willing to do so.
# posted by
: 6:26 AM
You're right, Kaijsa. I completely forgot about Seargeoh Stallone. I'm no fan of Sly's, but he HAS been very forthright about his son's condition, which I really respect.
# posted by
: 7:58 AM
Careful with the "social shaming." It can work both ways. Has your son ever had to endure, "What's the matter? Cat got your tongue? You must not have anything nice to say if you're saying nothing at all!" etc.
# posted by
: 2:39 PM
You keep doing your part; the only experience a lot of people have with autism is the movie "Rain Man." Don't get me started on Tom Cruise movies shaping any kind of social awareness.
One of our friends has a 4 year old boy who doesn't speak, and she's acknowledged that he very likely has a disorder in this spectrum. His father (who she's no longer with) is in total denial, but bless her, she's doing everything she can to get her child early help. If more people knew about it and understood that it's not the parents' fault, more children would be diagnosed and helped young, because the stigma affects parents who don't want to believe that there is anything "wrong" with their child.
Sorry, didn't mean to step up on a soapbox.
# posted by
Jenna : 9:08 AM
I totally agree.
My son has cortical blindness (it's a type of blindness where your brain doesn't always process the images your eyes are getting, so sometimes you see, sometimes you don't.) and developmental delay, and some other stuff, but we'll focus on the blindness for now.
I'm sure you can relate, but a lot of people are well-meaning, but completely clueless on how to deal with people with disabilities. I've seen people YELL at my son when they talk to him (um, his ears work fine, thanks.) wave things in front of him, in a "hey, can you see this?" (that makes me want to crack some skulls, seriously.) and my favorite of all time "What's wrong with his eyes?" (Usually said with a large undercurrent of "Ew.")
For the most part, I keep my temper and calmly explain that he's got a visual impairment and what cortical blindness is and that he's just a kid who can't see, but that he's still "normal" and they can treat him as such, just remember that he can't see stuff if you wave it around.
A lot of people, I think, are just uneducated and a little afraid of people with disabilities. Before I moved to Houston, my son went to a special-needs-only school (he could get the best services there) and a lot of his classmates had severe Cerebral Palsy. One of the kids was seriously the cutest kid ever and always had this huge grin. He couldn't really talk, but he understood what I said and could respond (usually by smiling even wider when the answer was yes. Man, that kid was cute.)I was talking to him one day and his mother walked up. She kind of blinked at me a bit and said, "Do you work here?" "No. My son is in your son's class." "Oh. Huh. Usually people don't actually talk to my son." It totally broke my heart.
I really want to believe that if we keep educating people, one day someone will get that yeah, they may be different, but they're just people. Everyone has something special to give.
Ozma - You're completely right about the human brain being a fascinating thing. When my son was between six months and a year old, he was completely blind. His brain has adapted around the bad parts and his vision has actually gotten better as he's gotten older. Nifty stuff.
# posted by
: 12:43 PM
My (fully grown but will always be to me) little brother has Asperger's. He is the most awesome person I know.
We were once sitting in a restaurant, and after a prolonged period of silence, he gestured toward the occupancy sign and said something to the effect of "this place could hold almost all of Custer's Army, because his army consisted of XX soldiers and this place holds X."
I'm not sure I have ever loved anyone more than I did in that minute.
He has his moments of awkwardness, but they don't stand in the way of how much he rules.
Now that he is an adult, he does a really good job of identifying the ways in which his reactions may be related to his Asperger's. He has said to me that he is sorry for whatever, but he thinks his Asperger's prevents him from understanding what I'm feeling. He has also said that he doesn't mean to bore me when he goes on and on about cars (his Asperger's related single minded fixation) but that he can't think of anything else to talk about.
I can't properly articulate how huge this is, and what hope it gives me for his future.
He works, he dates, and while some people who might see him initially think he is weird, he functions and thrives.
And those of us who love him, like his terribly protective older sister, will make sure that he continues to do so.
I guess I have no point, other than to tell you that I relate and that Asperger's people have their owen special awesomeness about them that the rest of us only aspire to. Anyone who can't see that isn't paying attention.
# posted by
: 6:51 PM
Gwen--I hear you. My brother has autism, and it's really obvious that he has a developmental disorder, since he doesn't talk and he has other indicative behaviors, too. People are generally polite to people with obvious disorders, as you say. However, I've known people with ASD, and so many people were rude to them. It *is* important to spread awareness about the spectrum disorders. It breaks my heart that so many people mock withdrawn, sometimes brilliant kids with ASD...people need to be more aware.
# posted by
Slauditory : 7:49 PM
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