National Public Radio in America aired a report about autism and the growing self advocacy movement today. I strongly suggest you download the audio and listen to the voices of autistic people.
Someone I know was interviewed – Amanda Baggs. Amanda has been an advocate longer than any of us I think. She’s smarter than me, she’s calmer than me, she’s more organised than me, she phrases things better than me. Along with Kathleen, I think Amanda is one of the best writers in autism related subjects. Different styles, different subjects, different neurology – same coherency.
Because I know Amanda I was looking forward to hearing her as much as I looked forward to hearing Autism Diva recently. That’s not to denigrate the other participants but its always good to hear the people you have formed a relationship with and who’s words have caused (and continue to cause) such a massive alteration in one’s thoughts and beliefs.
Amanda is one of those autistics that certain people don’t believe exist or can communicate – she is an autistic person who is typically referred to as ‘low functioning’ just like my own daughter. This is because she doesn’t speak. When you hear Amanda, you will hear her fingers on her keyboard. Here is a list of other autistic people who are non-verbal and considered ‘low functionning’.
When you read things written by Amanda (and other people) the idea that she is ‘broken’ or ‘defective’ or ‘a train wreck’ is laughable.
Here’s what Erik Nanstiel who believes himself part of the autism community had to say about Amanda:
Can I ask something of all of you here? Did you like to see her like that? […] I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy. A crime. […] I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity IS a tragedy…not an alternative lifestyle. It’s a DISORDER that can be avoided. […] when I see that woman (I’m sorry I don’t remember her name) lying there with the lonely blank stares typical of autism…and read of her horrible experiences…all I can think of is how could this have been avoided? I imagine everything she has missed out on earlier in her life…and will likely never experience later in life. She may be “fine†with her life and merely want acceptance and love…and everything else that folks seek in life. But there’s a richness to life she’ll never have because of her disabilities.
He was referring to ‘the woman’ on the site Getting The Truth Out. At the time, for good reason, Amanda wished to remain anonymous and so Erik didn’t know who she was. He didn’t know that he had regularly interacted with this woman he viewed as ‘a great tragedy’ with the ‘lonely blank stares typical of autism’. He stated that there was a richness to life ‘she’ll never have because of her disabilities’.
Amanda herself (who one should assume might know a little better than Erik) says:
…my underlying point remains the same: It’s wrong to tell people to go off and reinforce their most destructive prejudices by meeting or viewing photographs of people like me, people like my friends, or people like my old classmates. I know that people meet us and don’t really meet us, they just meet their warped perspectives of pitiful awful lives that drain everyone around them and should probably have been prevented to begin with. I know that people view pictures of us and view only what is in their own minds about what our appearances mean, and how they don’t want their children to be like those people. It is wrong to tell people to do this to us, and to themselves. It would be better to tell people to look at who we really are, our real value in the world, and reinforce that, instead of reinforcing people’s worst views of us. It would be better to say that preventing a whole kind of person is eugenics of the worst kind, rather than saying “Just look at them, you’ll see why it’s better that there aren’t more of them.â€
Don’t believe for a minute that most of us don’t understand on one level or another what it means to plan for a world without people like us in it. Don’t believe for a minute that “Just look at them†is an argument against our existence, or that there are any legitimate arguments against our existence. And watch what you say about us, we could be listening. 😉
Erik says in his quote that:
I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy
I would be proud beyond belief if my daughter grew up to have such a command of language, emotion, tone and justice as Amanda. Even if she didn’t I would still be proud. Megan’s favourite MP3 at the moment is the Podcast Autism Diva did – I would proud beyond belief if Megan grew up to have the same sort of principles and sense of justice as Autism Diva.
Amanda’s not broken. Autism Diva isn’t broken. Megan Leitch isn’t broken. They don’t require fixing.
Left Brain Right Brain 
Just for reference, if by “longer than any of us” you mean the people currently at the forefront of the vaccine stuff in your particular circle of friends, you might be close to right. As far as the entire autistic self-advocacy movement, it’s been around since I was a kid who didn’t know anything about it. Jim Sinclair (who was in the broadcast), along with two other auties (one of whom I finally met recently, and she’s very cool, and as someone once described her, very distinguishable from her NT peers) started ANI before I was even ever locked up.
Contrary to what I’ve been told has been said, however, Autism Diva is not behind this. Jim Sinclair has been around (in these circles) far longer than I have, and I’ve been around (in these circles) longer than the Autism Diva has. I don’t think Carley, while newer to the community, has ever even talked to the Autism Diva. These views are incredibly widespread among auties, who often come up with them independently of each other.
Heck, I first heard of the principles of neurodiversity (not in those words) from a non-autistic but non-neurotypical girl who happened to share a room with me in an institution. She said there was nothing wrong with who we were, but that since we weren’t cookie cutters, society didn’t want us running around loose. Can’t blame Autism Diva for her, nor claim she was one of the “lucky high functioning people” who escaped institutionalization (she was not autistic at all, but still not regarded as “high functioning” in the category she was put in)…
Also heard of someone saying they haven’t heard any non-speaking people glad they can’t speak. They clearly haven’t talked to enough, I know plenty who are either fine with it or glad about it, but who are not happy at all that their natural mode of communication goes ignored or is seen as “less than” speech, or in some cases “less than” language.
I can’t believe people think Jim Sinclair is Autism Diva! Different genders for a start!
_”Also heard of someone saying they haven’t heard any non-speaking people glad they can’t speak.”_
Yeah, I saw that. Maybe they’ll hear you and realise how bloody silly they’ve been.
*who’s words have caused (and continue to cause) such a massive alteration in one’s thoughts and beliefs.*
I agree with every word you said, and especially those above.
Charlie Fisher has always been one lovely boy, never “injured” or “broken”—always himself.
That’s the best NPR show on autism yet.
I think that we can improve peoples lives through certain means. For instance, when I run longer than 10km, my knees hurt. If I could fix that biomedically I would in a heartbeat. My son requires glasses and when he’s old enough I plan on asking him if he wants laser surgery. I doubt that he’ll be so attached to his glasses or define himself by them, but I suppose he might so I would definitely have to discuss this with him and make sure it was something that he wanted.
I’ve heard that people are likening autism and cancer in response to comments on the NPR piece where someone stated that autism is part of who they are and they don’t want it changed. I don’t think there are too many people living with cancer who define themselves by the cancer.
Further, cancer is quite well defined at the cellular and molecular levels, whereas autism is not. At this point, all cures and remedies for autism involve either guesswork or quackery. But even if autism was well understood at the molecular level, I think that it’s much more part of who someone is than some other condition such as cancer. Along that line, I can understand why someone would want a pill to reduce a motor tick or (if there were such a thing) to improve toilet regularity. What I hear most parents complain about are the toilet issues or the headbanging. But what happens if that goes away, is it good enough?
I wonder what people thought of the movie, X-Men III? The entire movie was based upon these themes.
It’s a lot to think about, I appreciate the post and everyone who contributed to the NPR piece.
Thanks for this blog post and thanks to all of you who replied. Bartholomew Cubbins: You bring up some interesting points in your very thoughtful reply. I agree with many of your points. I feel old and weary in all of this debating sometimes, but I’d like to give a little background (while attempting to keep my child’s anonymity in tact). We have addressed GI issues; anxiety; and OCD by using pharmaceutical remedies. Fortunately, our child was always able to tell us if something disagreed/agreed with him/her. Sometimes he/she would even ask for certain medications (at a rather young age). After a few years she/he asked to “go off” all pharmaceutical remedies … and he/she is now mostly med-free. I will never know if we did the right thing those years in the past; there is no way to really tell and I do worry if we should have perhaps not done anything at all.
I doubt that he’ll be so attached to his glasses or define himself by them, but I suppose he might so I would definitely have to discuss this with him and make sure it was something that he wanted.
Good plan.
I don’t think my glasses define me, but I can’t (and don’t want to) imagine myself without them. I got my first pair when I was 13 months old, and when I take them off, I always feel naked. I’d definitely feel like I was missing some essential article of clothing if I left the house without my glasses, even if I could see perfectly.
I’m all verklempt.
Amanda was responding to a quote, I believe, that origninated on a mercury parent Yahoo! group, to the effect that the NPR broadcast, “had Autism Diva all over it.”
Actually, if someone’s advocacy has traces of someone else’s advocacy “all over it”… it would be that Autism Diva’s blog has Jim Sinclair and Amanda Baggs “all over it”
Autism Diva first discovered autistic adult self-advocacy through thte book, “Elijah’s Cup,” which describes autreat and Jim Sinclair in some detail. That was about 3 years ago.
Autism Diva has probably learned the most about autistic advocacy from Amanda Baggs (on the Aut Advo group) who first informed Autism Diva about the problem with “low and high functioning” Along with Amanda Baggs, jypsy and Michelle Dawson and Frank Klein were probably the most influential… though it’s hard not say it’s a big group of people all affecting each other. Jane Myerding writes with great clarity and is respectful and calm like Amanda and Michelle. Autism Diva is not that calm. 🙂 Autism Diva has never interacted with Jim Sinclair, and is pretty sure she has never impacted xyr way of advocating.
Autism Diva is very honored to be part of Megan’s life in the form of Megan’s favorite MP3. You might expect Megan to start talking like Autism Diva… echolalia and all. 😀 Everyone will wonder why she sounds like an tangential, emotional Californian.
I also am not defined by my glasses, but I would rather have glasses than laser surgery. Glasses are less invasive and potentially annoying/dangerous in consequences.
As far as X-Men III I blogged about it after I saw it:
Amanda-
I only wish I’d been as smart and wise as you at the tender age of 25…kudos to you for ALL you do.
Ms. Clark-
hmmmm…tangential, emotional, and not calm. Are you sure we aren’t related?
I also wouldn’t do Lasik because of potential risks. The accomodation of glasses is really not a big deal. And it’s good that there’s very little stigma about visual deficits – not that visual deficits are unimportant.
The strange thing, Ms. Clark, is that I’m not all that calm. Well, okay, not all the time anyway.
But I’ve noticed that how calm my writing looks isn’t related to how calm I am. I can write something while calm and be told I’m angry, and write something while enraged and be told I sound calm and logical. Strange, that.
After hearing some of the reactions to the NPR piece, I wish they had put Amanda first. People seem to be focused on Michael Carley, the married guy with two kids and a mortgage, and saying, well, that’s fine for those high functioning aspies, it has nothing to do with me!
Yeah, it really was fun listening to Amanda.
GMAC,
There’s an expression “AC” that came out of online discussions of autism, people kept finding similarities between themselves and people with dyslexia, OCD, hyperlexia, Tourette, (people who aren’t necessarily also autistic) so they called autistics and Broad Autism Phenotype people plus those with similar disorders – “cousins” – AC means “autistics and cousins”…
There’s a really good chance we are “cousins.” 🙂
Ms. Baggs,
I guess I’ve never seen you “lash out”at people. I’ve seen Frank get mad and I’ve seen myself get mad… we all know how Jerry N. can be, and I hope Larry Rex never gets mad at me… I know you are capable of getting angry, and I know that people can annoy the spit out of you (me included) 🙂 sometimes… but you conduct yourself very maturely online, from what I have seen.
Oh, I’ve flamed people before. Just not all that often, I guess. But I certainly react emotionally to online discussions, often strongly.
I thought it was a good show and the interviewer came across well. It was great to hear Amanda in particular and nice to listen to Jim Sinclair too. I had never heard or read anything by Mr Carly before, and he spoke well too. I’m glad someone mentioned the problems of the functioning label.
Re. glasses and laser surgery, I had it 2 years ago and am pleased with the result. If I could have a magic pill to address something in my autistic son, I would like to ‘cure’ him of his bed-wetting. I wouldn’t even require him to be dry all night, just something to help him keep his urethra, and hence the urine, inside the nappy and not all over the sheet, duvet and pillow. But that’s not such a big deal. And it’s certainly nothing to do with his being autistic, more to do with the other condition of ‘maleness’!
I wonder what people thought of the movie, X-Men III? The entire movie was based upon these themes.
I agree, Amamda is magnetio.
I’ve read more of Amamda’s articles than anyone else’s with the possible of Frank Klein (at autistic advocacy) and not including kev’s regular posts.
Your a great writer keep it up, we all with you.
I’m… uh… not Magneto. (See blog post linked above for why I don’t like either of the factions in that movie, or with the particular dichotomy that movie encourages.)
ok maybe not so magnetio in the sense of thinks the minorty group is supieror to the majoity.
However the fundmental aguments against curing the fictional mutation in that film are the same as the aguements aganist diagnostic criteria for scizophriena and are the same as aguements aganist curing autism
NO group EVER has the right to suppose that its way of life is in ANY way superior to ANY other groups.
I have to admit though, as much as I disliked her ethics at times, Mystique had style.
I am stoney broke, well overdrawn again.
A nice fat cheque would fix that 🙂
Oh, broke, I get it. 😀 Well, it’s a drop in the bucket, but I’m going to order one of your videos.
Perhaps I do define myself by my glasses and my hat, probably other people do to, you can’t see much of my face at all hidden under hat glasses and moustache, such that without them I might well be unrecognisable to some people 🙂