Making the Case for the Boring Autistic

July 20, 2006 at 1:54 am (Autism activism, Savantism, Special interests, Special skills)

[Originally published on December 14, 2005] 

Many years ago my oldest son was heavily into action figures. In his room there were boxes of Teenage Mutant Ninja Turtles, Transformers, Power Rangers, X Men, and Marvel superheroes, to name just a few of the sets in his collection. He would spend hours posing them or making them shoot at each other. The best ones—the most prized—were the ones that had buttons on the back that allowed you to shoot the enemy with the least amount of effort. The buttons were spring loaded to give you a nice trajectory on your arrow, or whatever else you were trying to hurl at a villain. Not every figure of his had a button, but each had a special costume, firing action, or superpower—something that made him worthy of hours of playtime. Each Ninja Turtle could be identified on the basis of his mask color and preferred set of weapons. Spider Man could shoot out a red plastic web at the touch of a button, and Wolverine could alternately flex and retract his claws. He had a set of knock-off mini Transformers that could change from robots into dinosaurs and vice versa. They were all very cool, and they could all do something.

One day I came home from McDonald’s and brought my son some kind of figure: maybe an animal, maybe a hero. I wish I could remember what it was, but that’s not the point. The point is what he said to me when I handed it to him. He looked at it in a bored sort of way, turned it over to check it out, and then looked up at me and said, “Yeah, but what does it do?” I knew what he meant, of course, since we had spent plenty of time on the floor together playing action figures. I knew how important it was for there to be removable armor and an arsenal, and I knew how fun it was to push a button and see a javelin shoot across the room. But I pretended to be offended by that statement, putting on my Mom hat and trying to turn this into a teachable moment.

“What do you mean, what does it do? You are supposed to use your imagination and make it do things!”

Like I used to do when I was a kid … I think.

Not surprisingly, my son didn’t buy this let’s-get-back-to-basics speech about how to play with toys, and he never did end up playing with the little figure from McDonald’s. A few short years later, he stopped playing with action figures, and they are all stored in plastic boxes up in our attic, alternatively melting and freezing with every passing season.

In the world of autism, if autism really is a world and not just millions of tiny worlds or multiple realities within the same world, there seems to be a strong drive not only from the outside but also from the inside, even among self-advocates and parent advocates, to make sure that autistics are described in terms of their special abilities, or what I’m going to term autistic superpowers. I have detected a new Seinfeldian sensibility about autism and autistic people that goes something like this:

“She’s autistic—not that there’s anything wrong with that—but she can ______!”
[sing, read from birth, play piano, mirror write, program computers, compose symphonies at age 3, paint masterpieces, recite all the state capitals in reverse alphabetical order, raise awareness of autism, talk to animals, be the “face of autism”…]

There is a certain political correctness that has creeped into the “autism conversation” these days, and to me it sounds a lot like an “ism” (e.g., multiculturalism, racism): Let’s just call it aut-ism. The problem with isms is the general tendency to downplay anything that is either negative or contradictory to the theory at hand, and to overemphasize anything that is, or seems to be, positive or “celebratory.”

I have been heavily involved in autistic advocacy over the past year or so, and in that time I have witnessed a tendency among some parents to publicly and repeatedly highlight the special talents of their autistic children. As a parent of two autistic children, I have demonstrated this same tendency, so in no way am I pointing the finger at others and not also myself. For example, I have found myself telling other parents, teachers—pretty much anyone—all the “amazing” things that one of my two autistic sons can do, such as playing piano and programming my mother’s VCR. The trouble is, these things are really not all that amazing. What am I trying to prove? I’ve seen other autistics described as “savants” because of their ability to read or compose poetry. Any autistic who can do anything they are not generally expected to be able to do based on their behavior or IQ is fair game for being called a savant, both by those who know better and by those who don’t.

Certainly you could argue that it’s just a natural instinct for all parents to brag about their kids, and that this doesn’t have anything in the world to do particularly with autism. You could be right. But if I thought parental instinct were all that was going on here, I wouldn’t be speaking out about it. I have one neurotypical child, and his friends’ parents do not brag about their NT kids in quite the same manner or intensity as I have seen in many parents of autistics. My goal is not to assign blame, but to identify possible root causes of this behavior.

I believe that at least three things are going on here, and they might even be going on at the same time in the same individual despite the inherent contradictions:

1. Many of us have bought into the notion that if your child is autistic, you had better highlight (if it is obvious) or scramble around looking for (if it is not) what they are good at—what they can do—as if to make an apology to society for the fact that they are autistic. Some parents may also (or instead) have a tendency to play up and emphasize the supreme talents of their NT children. The motivation for all of this bragging seems to be the same, whether the bragging focuses on the autistic or the nonautistic children in the family: To offer up something desirable to the public eye as a peace offering for the autism.

2. Many of us have been encouraged by our peers in the autism advocacy movement to look back into history for role models and icons who were likely or even probably autistic, and we have on some level (fairly or unfairly) looked at our children against the backdrop of Mozart and Einstein, leaping at anything that our kids do that seems to continue along the path of our Autistic Forefathers.

3. Many of us are deeply concerned about our kids’ futures. By grabbing onto and emphasizing anything that they can do that we perceive could be made into a career or at least a living, we assure ourselves—and the outside world—that when we die our children will be able to live independently.

On some level, parents of autistic children are made to feel that they must make the case for their children’s worth—but by whom? Is society sending out these messages, or is this impulse to prove something merely the product of normal human insecurity and an effort to put a positive spin on a difficult reality?

The only “face of autism” that the general public sees is the face that is fed to them through the media. Coverage of autism is scarce, both in film and documentary, and of these there is little if anything that bears any resemblance to reality for most autistics. That is because autistic people are not the ones in control over the content and the message of what is being presented. Everything I have seen thus far in the media has sugarcoated autism by offering up something in return for the autism, something that makes it worth the viewer’s time to be watching anything about a “retard” in the first place. Take two movies, one pretty good (I have seen it several times) and one pretty bad (I have not seen it and don’t want to): Rainman and I Am Sam. In both, the main character has something of conventional value designed to make the viewer laugh, or cry, or marvel, or wonder if autism really is such a scary monster after all.

Rainman is the tale of an autistic savant based mainly and loosely on the real-life autistic and savant Kim Peek. Sure, there really is such a thing as Savant Syndrome; and sure, not all autistics are savants; and sure, not all savants are autistic. That is hardly my point. My point is this: Imagine Hollywood making a movie called Rainman, about an institutionalized guy named Raymond Babbitt who had no special talents or skills, who rocked and talked to himself and made no eye contact. Period. Imagine the part about card counting in Vegas being edited out of the movie, but the parts about needing to buy underwear at K Mart and needing to watch Judge Wapner being retained. This wouldn’t make for very interesting viewing, would it? Raymond’s “annoying” habits and interests are endured throughout the movie because the payoff is getting to see Raymond’s other-worldly ability to count, memorize, and help his brother cheat at black jack. Don’t get me wrong: I still loved Rainman, especially the bathtub scene. I’m not knocking the movie as a movie. I’m trying to identify the underlying message that society seems to be both sending and receiving when it comes to autism and autistic people:

What can you do?

I Am Sam isn’t anywhere near the filmmaking caliber of Rainman, and Sam’s character couldn’t be more different from Raymond’s. So why even bother to mention this inferior movie? Sam is supposedly both autistic and mentally retarded, but he has superpowers too. He is portrayed as a father with a mental age of 7, who just happens to have a group of helpful friends and a lawyer willing to work pro bono to help him gain custody of his 7-year-old daughter. He is able to hold down a job at Starbucks, pay for his own apartment, and raise a child on his own. His daughter isn’t just smart; she’s precocious. The moral of the story is that love and will power conquer all…including reality, I guess. It is the stuff that comic books and fairy tales are made of.

It isn’t just Hollywood that is guilty of wrapping autism in a mantle of talent and virtue. There is such a dearth of anything remotely close to real life when it comes to autism on the screen, that the recent Nightline episode “A Place in the World” was met with acclaim even among autism self-advocates and parent advocates, including myself. We were all applauding the way the show was handled, but many of us failed to detect what for me is now the all-too-predictable set-up: Autistic subjects of documentaries also need to have a trick to perform. Otherwise, who will watch it? How will the show make money off of its advertisers?

The premise of the show, “What happens when all these children grow up?” was definitely a good one. Autistic adults who are not fully independent, and are aging out of whatever system they are in, could end up returning home to their aging and perhaps ailing parents who may not be able to handle the physical, emotional, and financial demands put upon them by the transition. The point of the story was to expose the fact that autistic children actually do grow up to be autistic adults who continue to need services: they don’t just disappear. For that issue, the journalists who put together the documentary should be applauded. However, I can’t help but point out that the two autistic adults showcased in the documentary also just happened to have a talent or two:

Jamie Hopp is described as “profoundly autistic”…but she can sing, and in front of an audience.

Paul DiSavino is videotaped perseverating about a scene from Sesame Street, and his mother laments that the alternative to a group home for Paul would be “unbearable”…but he works and plays piano.

Take-home message: Autistics are good for something. They are not throwaways. They have something to give back to society. We as a society need to plan for their future.

Okay, I think we can all agree with that. Here’s the problem: Why don’t they ever show autistic people who don’t have any measurable or recognizable talent, employable skill, or something else that could at least fascinate or intrigue the viewer? If an autistic is presented along with a heavy dose of pathos—

“He [Paul DiSavino] will not survive it … it would be regressing back to the institutions, back to not caring, just doing, just warehousing them … not recognizing what’s important, and just abandoning them.”

—that pathos tends to be balanced by something good or positive so that everyone can walk away feeling better about what they just saw, or better for having been given a different point of view about something they thought they understood.

Autistic people can be just as boring and ordinary as anybody else, but boring and ordinary don’t make for good television or film. Autism is “in” these days, but not much has changed since Rainman debuted in 1988. The autistic mystique invented by the media can be considered as inherently prejudiced and damaging to autistic people as the concept of the noble savage:

The noble savage is inherently good, but he only transmogrifies from an animal state to a human state when he becomes civilized.

The autistic is inherently gifted with talents that normal people could never manufacture within themselves, but he only becomes interesting enough to talk about when his autistic gift is considered intriguing, useful for raising awareness (read: money), or marketable.

Several months ago, a bunch of us in the autism self-advocacy movement got together and made a poster simultaneously mocking those who thought the Autistic Liberation Front was an actual organization and having a good laugh at seeing ourselves dressed in costumes of all sorts. We were the “ALF Superheroes,” and my submission for the poster was an old picture of me dressed as the Scarlet Witch, my favorite X Men character from childhood. Someone was dressed as a character from Star Trek, and someone else was a giant M&M. The poster was truly hilarious.

In all seriousness, though, most of us are not superheroes let alone superhuman. And yet there are some people within the autism self-advocacy movement who are quite serious when they suggest that autistic people could be the product of an evolutionary change in humankind, leaving mortal NTs in the dust. The “proof” behind that theory is all the nifty things that autistics can do that ordinary NT people can’t. What about the “other” autistic people? What if they never learn to read, or write, or talk, or compose, or hold down a job? What about them? If all of the autistic superheroes out there are a step higher than their NT counterparts, what about the autistic leftovers: are they a step below NTs? Have they devolved? There can be no self-advocacy without solidarity. As it is, there is little solidarity between “Asperger’s folks” and all those hard-core autistics, as if the line were that sharp between the two allegedly distinct groups. It disturbs me, even pains me, to see a new elitism cropping up even among autistics who don’t carry an Asperger’s diagnosis.

Many years ago I gave my son a toy. He chose not to play with it because it didn’t “do something,” and playing with a toy that didn’t do something seemed to him to be more trouble than it was worth. It took too much effort for him to find something valuable in that little figure—whatever it was—and he lacked the imagination to try, not because he wasn’t smart or creative, but because the toys he had grown accustomed to enjoying had weapons and moveable joints. This new generation of toys was action-packed and exciting, so he ignored what he considered to be a boring toy. What he failed to realize was that the toy was only as boring or interesting as his own imagination, and that it was not limited by the number of weapons it could hold or the fighting force of the button on its back. It could go anywhere, do anything, be anything my son might have wanted him to be, had he only taken the time to consider its possibilities. Or, it could have been nothing obvious, nothing discernible. It could have just been incorporated into the other group of toys he was playing with, and yet out of the action…an onlooker, maybe a watchman.

31 Comments:

At 2:26 AM, Autism Diva said…
Cool post. :-)Nice to see you back in action. Figures. (heh)

At 5:20 AM, Susan Senator said…
This is brilliant. Wish I’d written it myself! :-)One thing that sprung to mind, about my NT son’s NT friend Jamie. They were around 6, playing with action figures, when I heard her say, “But what does he do?” with such contempt.Anyway, you are so right. None of us should have to prove our worth but somehow, we all do, whether we are autistic and have apologetic parents or NT and have clueless parents…

Glad you’re back. Looking forward to the next book!

At 8:57 PM, elmindreda said…
Very well-written. Thank you. Having recently lost the Thing I Do (write code for a living), I’ve been thinking a lot about this, but you expressed it more clearly than I’ve been able to.
At 1:36 AM, ballastexistenz said…
THANK YOU.I’ve seen so much so-called “self-advocacy” where autistics say “Oh we’re good because we can do this, and this, and this.”And I hate that. I don’t view people’s value to the world that way. Moreover, I’m usually excluded from the people who are being elevated to super-aspie status, so I probably notice it more. But whatever it is, I’m really tired of people (and it’s not just autistics who do this — I know someone who said she found out that most physically disabled people considered “disability pride” to be “At least I’m not retarded”) holding up some skill and saying that’s why they’re valuable to the world. Which usually implicitly excludes me and a lot of other autistic people.

At 7:11 AM, Book Girl said…
Great post, and also applies to people with physical disabilities. Here in Aus. there has been a push for `see the ability, not the disability’, and see the person, not the disability’. This makes me cringe – it’s just another version of the `supercrip’ syndrome. Some of the most dangerous people I’ve been around have been those who refuse to see the disability – therefore preventing me from getting the help and support I need, making me even *more* disabled. And they don’t want to know, when you are not coping. We are still deserving of the best help, support, respect and dignity, even if we can’t do *anything* they regard as of value. I might write aboul this further in my blog, when I get a chance, may I link to this when I do?
At 11:24 AM, Lisa Jean Collins said…
Hi all,Thank you all very much for your comments and for visting this blog. I feel very drained in the aftermath of this piece, so I’m not able to get my thoughts in order right now….but, I just wanted to say to Book Girl that by all means you can link to this blog.

At 12:44 PM, ballastexistenz said…
By the way, I linked to this post from this post, which also links to a few other articles that either touch on or are mostly about this topic.
At 2:54 PM, Michelle Dawson said…
I come from a country where at an official level (legal, political), and also in the media, there is nothing good about autistic people.If an autistic does anything at all in Canada, it must officially be because the autistic is in an ABA/IBI program (and we should call the fact that s/he does anything at all a “miracle” or something similar). In Canada, we are total zeros except in ABA/IBI programs (read the jurisprudence). Without ABA/IBI, we get “worse and worse” and find our natural destinies as less-than-half-living residents of institutions.And if you accomplish anything (e.g., the ability to type) outside of an ABA/IBI program, then you are a fraud, imposter, etc. You can’t possibly be autistic.

I see no reason why it is wrong to describe autistics accurately.

Autistics have strengths not available to the typical population. Unless a whole lot of reseachers have conspired to fabricate/falsify data, this is true of all autistics (across age and IQ ranges). This is as true as that non-autistics have strengths not available to autistics. This second fact gets reported a lot.

What is being proposed is that it’s wrong to mention accurately what makes autistics different from non-autistics–except we’re allowed to say that autistics are bad at things that matter to non-autistics. E.g., I lack a lot of basic self-care skills. Oh, and I have severe self-injury.

But I’m not allowed to say that because I’m autistic (not in spite of it), I’ve been able to do stuff.

I hate the examples given, and I don’t think autistics have to prove we have strengths in order to be authorized to live. But the examples given are wrong because they are condescending, inaccurate, demeaning, etc, not because they involve autistic strengths.

I disagree that we should not ever describe autism accurately, because autism includes strengths, and including strengths in the discussion is wrong.

At 4:14 PM, ballastexistenz said…
It’s not a matter of “describing autism accurately” and it is okay to describe autistic strengths.What is being complained about is people who say “Our existence as autistic people is justified because of these particular strengths.” Or people who give patronizing kinds of praise to compensate for their medical/deficit-oriented view of us. And so forth.The idea that it is okay to be autistic and not be particularly spectacular at anything is a very good one, and does not in any way deny the existence of autistic strengths, merely the use some people put them to.

At 5:07 PM, Lisa Jean Collins said…
Michelle,Unfortunately you absolutely missed the point of this essay. There were many points, and I don’t care to rehash the entire essay point by point for you.Off the top of my head, though:

One point I was making is that when autistics are portrayed in the media, they are done so in a very twisted way, in my POV, and I gave just a small number of examples.

Second, I was not saying that autistics do not have skills unique to autistics and different from nonautistics. I was saying that autistics do not and should not need to define themselves by those skills and use those skilss to distinguish themselves as better than other autistics.

Third, I was pointing out that some autistics are not only subjected to a double-standard from the outside, but they subject themselves to it, by presenting their special gift or talent as their autistic calling card instead of just doing what they would do or being what they would be or having whatever occupation they would chose to have, or not, or whatever…unlike NT people who don’t feel like they have to present something of themselves as evidence of their unique NT-ness.

If an NT person is a prodigy or just especially gifted, there is a period put on the end of that sentence.

If an autistic is a prodigy or especially gifted, that is attributed to the special autistic mind. Do you still not see a double standard here?

Fourth, I was talking about the appetite for the general public to see autistic success stories and autistic wonderment, not everyday stories of ordinary autistic people doing ordinary things. I don’t see the likelihood of there being a “show about nothing” starring autistics. And I don’t see the likelihood of there being a reality show called Autism House (a show I made up) where people get to see what it’s actually like day in and day out. That might be boring.

Fifth I was talking about a real elitism that I have seen, whether it is intentional or not, and the real marginalization that some autistic people and their families feel at the hands of other autistics.

There was not one thing condescending about this essay. You are reading something into it that isn’t there.

My point was that autistics don’t need to be wrapped up in a mystique invented by someone else who is not autistic and, after being repackaged in this way, filtered back to an audience that already knows little about autism in the first place. Autistics should be treated individually without any assumptions being made not only as to what they can’t do but as to what they can. It is not always true that when one is disabled in one area, another part of the brain kicks in to compensate for that loss. Differently brained might mean that the person has very special skills…or it might not.

If an autistic’s “skill” is touted as “amazing” when the same skill would not be considered all amazing in an NT person, THAT is an act of condescension in my view.

You are certainly entitled to yours.

Thanks for visiting.

At 6:12 PM, Michelle Dawson said…
The examples I was referring to were the ones you wrote disapprovingly of in your article. Those were what I described as condescending, etc. So far as I can tell, you agree with this.Where we differ is that I don’t see autistic strengths as something we shouldn’t mention (in case someone gets the wrong idea) or as being irrelevant to our existence.And I disagree that there are autistics anywhere who have no autistic strengths. (You wrote: “The “proof” behind that theory is all the nifty things that autistics can do that ordinary NT people can’t. What about the “other” autistic people?”).

Reducing autistic strengths to “nifty things” is something I could probably object to. But the assumption that only some autistics have strengths is not something I agree with.

I also tried to show that a different problem exists in Canada, which, like the problem you raise, results from inaccuracy, condescension, intolerance, the exclusion of autistics from stuff that concerns us, etc.

And yeah, it can be amazing when an autistic does the same thing as a non-autistic.

It’s amazing because autistics produce typical performance in atypical ways. (And when we do things better, we aren’t doing “more”, we’re doing “different”.) That is totally cool (there were studies at IMFAR last year which made me jump up and down with joy, they were so cool). It’s as non-boring as it gets, if you’re interested in how autistic and non-autistic brains work.

And being so interested doesn’t mean detracting from the humanity or worth of any autistic. It might mean the opposite–respecting accuracy to ensure that false notions of autism do not keep on surviving and harming autistics.

Just because the media and so on twists things around in various ways, and just because we are having this big acute drastic (etc) shortage of accurate information about autistics, doesn’t mean that we have to back off from what is known and possible and wonderful.

At 7:07 PM, Lisa Jean Collins said…
Hi again, Michelle!The examples I was referring to were the ones you wrote disapprovingly of in your article.
Those were what I described as condescending, etc. So far as I can tell, you agree with this.Yes, I do, and thanks very much for clarifying what you meant by what you said.

Where we differ is that I don’t see autistic strengths as something we shouldn’t mention

I absolutely don’t think that a strength is something you shouldn’t mention. I’m not sure why you would have gotten that from the article.

(in case someone gets the wrong idea) or as being irrelevant to our existence.

I don’t think it’s irrelevant. A person might be gay, for example, but it would be inappropriate or irrelevant for this fact to be the main topic of every conversation. The fact of my child’s autism permeates everything in his life and every interpretation of everything he does *even when it doesn’t have to.* In other words, if he likes to blow up balloons (a lot!), it’s because he’s autistic, not because he just happens to like to blow up balloons. If he chews on his pencil, he is having “oral sensory issues,” but if my NT kid chews on his pencil, it’s just a “bad habit.”

And I disagree that there are autistics anywhere who have no autistic strengths.

If they are not considered useful or entertaining, they aren’t generally showcased. If they are showcased, it is to show how tragic the gift is (e.g., that someone would be able to [but would want and need to] recite the lines from “Who’s on First?” over and over again)

(You wrote: “The “proof” behind that theory is all the nifty things that autistics can do that ordinary NT people can’t. What about the “other” autistic people?”).

Reducing autistic strengths to “nifty things”

I used the word “nifty” sarcastically. I used the word as though I were looking through the eyes of the general population who see images of autism on the screen and believe that what they are seeing has relevance to all autistic people. So people might *think* they are being supportive when they ask a mother repeatedly if she has identified her autistic child’s special talent yet, and the mother can’t think of anything particularly special, and she feels really bad about the assumption being made. Instead of the well-meaning person looking at her son *for her son as an individual* the person is fishing for her son’s special talent so that they can feel better somehow.…And this doesn’t happen to mothers of NT children!I have seen this phenomenon happen with my own son and his NT preschool, and soon I hope to blog about the one platitude that I keep hearing over and over again that is used to help the NT children “relate” to the autistic kid in the class.

is something I could probably object to. But the assumption that only some autistics have strengths is not something I agree with.

Every single person–autistic or nonautistic–has strengths and weaknesses *within themselves.* Therefore I cannot understand the point you are making. I’m talking about *public perception* of a “low-functioning autistic” versus a “normal person” (i.e., if a normal person could do each and every thing that an “LFA” person could do, then the *public perception* might be that the “LFA” person doesn’t have any special skills or conventional talents *that are praised by the general society*) versus a “high-functioning Asperger’s genius-type” who is perceived to be part of the Al Einstein and Bill Gates crowd.

I really do welcome this discussion with you because I want it to be clear where I’m coming from. There is a difference between what is real versus public perception of “real”; and there is a difference between value (both internal and external) and the public perception of value.

At 9:39 PM, Lisa Jean Collins said…
Ballastexistenz wrote:What is being complained about is people who say “Our existence as autistic people is justified because of these particular strengths.”Case in point:

“Filtering the geeky genes out of high-tech breeding grounds like Silicon Valley, in other words, might remove the very DNA that made these places what they are today.”

Source:
http://www.time.com/time/covers/1101020506/scaspergers.html

At 9:40 PM, Lisa Jean Collins said…
This post has been removed by the author.
At 2:27 AM, Michelle Dawson said…
What I see happening is that autistic strengths have become taboo or shameful (elitist) or the subject of mockery, ridicule and sarcasm (“tricks” “nifty”), or disbelief and suspicion (e.g., Gina Green warning everyone not to be fooled by the extraordinary abilities of autistics). That is, they are denigrated, misrepresented, diminished, demeaned, doubted and denied.If I talk about autistic strengths, then I must be a deluded elitist invoking mystical garbage (or something like that).I don’t care about “political correctness”. I care about “factual correctness”, and also about ethics. There can be consequences when beliefs about autism are stated as fact (e.g., a statement that autistics do not have strengths, except relative to our weaknesses).

What is happening is that a factually correct (or at least in the ballpark) view of autism has become unacceptable. The consequences of this are not likely to be good.

What I also see is a distinction being made between supposed “wonderment” etc (apparently, being in awe of what humans can do is bad, when those humans are autistic) on one hand, and what autistics are supposedly really like every day on the other, as if there really are superpowers which a few autistics episodically have (maybe after emerging from phone booths). The rest of us are boring and banal.

The strengths I write about (I made an incomplete and now out-of-date list here http://www.sentex.net/~nexus23/naa_sen.html ) were not found by staring at autistics and saying “there must be a special talent in there somewhere”. And they were not found in a few handpicked superhero autistics or shiny aspies or whatever (and what on earth is a “hard-core” autistic? Dan Olmsted used that one too).

If autistics had no strengths relative to typical people (versus relative to our weaknesses), then there would be no significant results to report, versus the large quantity (with replications) that now exists (across decades and continents).

I don’t find this boring at all, or deserving of mockery or ridicule, or something to hide when we go out in public, or to deny because it doesn’t fit in with various beliefs about what autism is allowed to be in this society.

I’m in awe of human (and non-human) neurology, and I’m particularly amazed by how autistic brains work, and in how this is expressed, not in tricks or superpowers (which are just words used to put us down) but in how autistics atypically perceive, attend, learn, develop, etc.

At 8:13 AM, Lisa Jean Collins said…
Hi Michelle,I didn’t think I would have had to put the word Boring in quotation marks throughout the essay to indicate irony, meaning *I* don’t think any autistics are boring but *others* probably do (or worse, hence the term “retard” in the story) if they can’t identify anything *of conventional value* in the autistic person they have met or seen up on the screen.You wrote:

If autistics had no strengths relative to typical people (versus relative to our weaknesses), then there would be no significant results to report, versus the large quantity (with replications) that now exists (across decades and continents).

Another consistent and salient point throught this essay was the idea of marketing and making something that will be popularly viewed, *and* who is doing the marketing, and through what preconceived notions about what they are documenting. Even if all autistics have strengths relative to NTs, that doesn’t mean NTs will find certain of those strengths *interesting*…which was my point. The “conventionally interesting” things are hand-picked and fed back to us, and the “noninteresting” (“boring,” or things that appear to be unenviable by the NT viewer) are not. My son David can do many things that NTs can’t, such as tell me the exact order of the play list on the back of his CD box, regardless of length, but while that is indeed a skill, if it were put into documentary form by today’s standards, that would be seen as something kind of weird and tragic, whereas if he were composing symphonies, it would be celebrated as genius.

I don’t find this boring at all,

Neither do I. That wasn’t the point. I would not find a reality TV show called Autism House boring…*at all.* Do you think it would get good ratings?

or deserving of mockery or ridicule, or something to hide when we go out in public, or to deny because it doesn’t fit in with various beliefs about what autism is allowed to be in this society.

Again, the point was *all* people should be allowed (for lack of a better word) to be as conventionally “boring” or as interesting *to others* as they are or care to be, but there is a double-standard when it comes to autistic people, which I have amply pointed out already.

This is not about winning or losing this argument. I stand by my essay. If you want to have the last word on it, that’s okay. I never asked you to go away. I said I welcomed a dialogue with you.

I used the word “controversy” on Ballastexistenz because initially I thought you were saying that the entire piece was condescending, etc., but you were not saying that.

I still believe, without denying your valid arguments, that you are missing the overall point of the essay.

At 10:28 AM, Bonnie Ventura said…
Hi Lisa, it’s good to see your blog is back in action again. How’s the book coming along?I hope that I am not one of the people on your list of “elitists” because I have a website that focuses on the positive aspects of autistic life. My site is not intended to be divisive in any way; its purpose is to refute society’s negative stereotypes and promote a healthy sense of self-worth, in much the same way as other minority-pride campaigns such as Black Is Beautiful, Gay Pride, etc.At present, autistics are defined, for purposes of diagnosis, entirely in terms of “impairments.” This is as wrong and harmful as defining any other minority group entirely in negative terms. Strengths and abilities (realistically described) need to become part of the public perception of what an autistic person is. This issue has been discussed at length by autism experts such as Simon Baron-Cohen and Tony Attwood.

As I’m sure you know, there are many people with the Asperger’s diagnosis who are neither geniuses nor elitists, and I find it disturbing when I see autistic activists like yourself pointing to “Asperger’s folks” as an example of elitism. That is both unfair and divisive. Whether or not a person gets an Asperger’s diagnosis often has more to do with what country he or she lives in, the diagnosing psychologist’s personal views, and so forth, than any actual differences among groups of autistics.

And Albert Einstein was a Kanner autistic, by the way; he didn’t speak at all until he was 5 years old. Not every autistic genius is in the Asperger’s category. I think this is an important point to discuss, not to mislead people into thinking that we’re all geniuses, but to refute the existing misconception that late-speaking autistic children are hopelessly impaired and doomed to institutionalization.

Other minority groups regularly celebrate their historical role models, such as in Black History Month. I don’t see what’s so controversial when autistics do the same thing.

As for your criticism of articles that argue against removing “geek genes” from the human gene pool: Granted, we’re not all super-geeks, but unfortunately there is a substantial majority in our society that sees nothing wrong with routine abortion of disabled children, and the writers of such articles are doing their best to prevent a genocide by playing up autistic abilities. I wish that tactic weren’t necessary, but to some extent I believe it is.

Pro-lifers have been arguing for 30 years that abortion of babies with Down Syndrome is wrong because every life has value, and they have failed to persuade society to their point of view. We don’t have another 30 years to argue the issue — there will be a prenatal test for autism in the very near future. I haven’t made the “geek genes” argument in either my new anti-eugenics page or my Genocide Clock page, but I don’t criticize those who do; I see this as a situation where the ends justify the means.

Look at it this way: Suppose you are attending a family reunion, and an escaped murderer suddenly bursts in, brandishing automatic weapons. He says that he will shoot all your relatives — unless you can convince him that they have value to society. Would you tell him what he wants to hear? Or would you argue earnestly that all people have intrinsic value, and walk away feeling proud of yourself for sticking to your principles, while the police clean up the bodies?

At 1:30 PM, Lisa Jean Collins said…
Hi Bonnie,You wrote:I hope that I am not one of the people on your list of “elitists” because I have a website that focuses on the positive aspects of autistic life.

I hope you don’t think that because you are not or don’t consider yourself to be an elist, elitism doesn’t exist among people on the autistic spectrum.

As I’m sure you know, there are many people with the Asperger’s diagnosis who are neither geniuses nor elitists, and I find it disturbing when I see autistic activists like yourself pointing to “Asperger’s folks” as an example of elitism.

Here is the exact line from the essay: “As it is, there is little solidarity between “Asperger’s folks” and all those hard-core autistics, as if the line were that sharp between the two allegedly distinct groups.”

You have interpreted this to mean either that I believe all Aspies are elitist or that the very existence of the label Asperger’s Syndrom is evidence of elitism, or otherwise everyone on the spectrum would be called “autistic.” I’m saying neither. I’m saying that I’ve seen *some* “Asperger’s folks” consistently and unapologetically distance themselves from other autistics, as though they were not only distinct but better by virtue of their “intelligence” (however they define intelligence) and by what gifts they have to offer society.

Other minority groups regularly celebrate their historical role models, such as in Black History Month. I don’t see what’s so controversial when autistics do the same thing.

It is very controversial when you pair that line of thinking with this one:

“…the writers of such articles are doing their best to prevent a genocide by playing up autistic abilities. I wish that tactic weren’t necessary, but to some extent I believe it is.”

It is controversial when the argument goes like this:

Telling people not to abort their Down’s Syndrome children because it was immoral didn’t work because the parents had nothing to gamble on: there were no Down’s role models to dangle in front of them to give them a reason not to abort, and so they did. [Not to mention that many did not and do not.]

If we give a pregnant woman a reason not to abort her autistic fetus by telling her that she had a *chance* of producing the next Einstein, the ends would justify the means and the end result would be that many non-Einstein autistics would be allowed to be born that would not otherwise be born. So the argument is a that she might strike gold or hit the lottery with a socially valuable autistic, versus a socially burdensome one.

To me this is a fallacious argument. Those who don’t believe in abortion are not going to abort their babies anyway, for starters. Second, you are saying that for the purpose of survival, it is necessary to give credence to an aborrhent idea, or at least pretend to, because the ends justify the means.

It’s like saying that the reason poor black babies shouldn’t be aborted that you wouldn’t want to kill the next Oprah or Shaq, and that it’s worth the risk to have “all that rampant black crime” (also a fallacious argument) in order to reap the potential benefit of giving birth to the next Black Role Model.

I don’t like this line of reasoning.

You also make this analogy:

Look at it this way: Suppose you are attending a family reunion, and an escaped murderer suddenly bursts in, brandishing automatic weapons. He says that he will shoot all your relatives — unless you can convince him that they have value to society.

Some things are worth dying for. You seem to imply that there is nothing worth dying for, even ideals. If someone pointed a gun at my head and asked me if I believed in Jesus, I would have to say “yes” even if I knew I was probably going to have my brains blown out.

At 1:32 PM, ballastexistenz said…
The trouble is, those things that work in short-term practical ways for some people, end up causing trouble for others of us.You talk about the analogy with your family, and proving that your family have worth to the world so the people don’t shoot them.Here’s what it feels like from my end: Other people are proving their worth to the world often by trying to prove that they are not like me. Sometimes they are very explicit in describing traits I have, and contrasting themselves to those traits to prove that, unlike me, they have worth. So, they are saving their own skin, and throwing me to the wolves, as far as I can tell.

A lot of people seem to be offended when people bring up the fact that some people in this community are elitist. Basically, if you’re truly not elitist, then we’re not talking about you.

But if you’re basing your worth to the world on certain specific qualities that you have and lots of other autistic people don’t, don’t be shocked if people call you elitist. If you’re not doing that, then I don’t know why you should be bothered when people describe the ones who are.

Because there are ones who are.

And some of them are very explicit in putting Asperger’s above autism on a hierarchy. If you’re not doing that, again, we don’t mean you. But some people do it, and ignoring it won’t make it go away.

At 2:54 PM, Bonnie Ventura said…
Lisa wrote:It’s like saying that the reason poor black babies shouldn’t be aborted that you wouldn’t want to kill the next Oprah or Shaq, and that it’s worth the risk to have “all that rampant black crime” (also a fallacious argument) in order to reap the potential benefit of giving birth to the next Black Role Model.This is an interesting point, and when you look at the history, those lists of black role models actually were written as a response to similar concerns. In the early 20th century, when the eugenics movement was in full swing, many influential American politicians openly belonged to the Ku Klux Klan and other hate groups. They advocated sterilizing all blacks as a way to combat crime and other undesirable behaviors that were seen as traits of the genetically inferior.

Black activists such as W.E.B. DuBois, the founder of the NAACP, argued against eugenics by glorifying the accomplishments of ancient African kingdoms, holding up notable African-Americans as role models, and suggesting that modern-day blacks could accomplish great things if they were freed from segregation and oppression.

Other blacks criticized that approach as unrealistic and elitist, but it played an important role in fending off the eugenicists until such time as social attitudes changed.

The early leaders of the NAACP didn’t throw the less fortunate people of their race “to the wolves” by pointing out that there were some high achievers who were black. Rather, they struggled for the survival of their race in any way they reasonably could, under the circumstances. Sometimes a message has to be tailored to what the audience is capable of understanding, especially when the audience consists of the ignorant and prejudiced. I don’t view that as surrendering one’s ideals.

At 5:02 PM, Michelle Dawson said…
I’m no fan of Tony Attwood, or of Simon Baron-Cohen (though they aren’t equivalent in any way).My objections to their informal positions (SBC’s science is another issue; Dr Attwood does very little actual research) are similar to my objections to Ms Collin’s position. Those objections are based on the problems of bias and inaccuracy, which in turn create ethical problems. Decisions are made about what is right or wrong, or good or bad, or helpful or harmful, based on false or partial information.Inaccurate views of autism, however framed, shouldn’t be replaced by other inaccurate views, so that whoever writes the best rhetoric or is most sympathetic or loudest or is the best public speaker or marketer (we’re against that, right?) at any given time gets to decide what autism is and who autistics are and what kinds of decisions should be made about us.

The way to get around whatever false presentations of autism are circulating (and which result in grossly unethical positions like Arthur Caplan’s, and harmful decisions like Wynberg) is to work towards accuracy, or at least, towards less inaccuracy, rather than different inaccuracy.

ballastexistenz said…
“The trouble is, those things that work in short-term practical ways for some people, end up causing trouble for others of us.”

Yes, though “those things” include any kind of false information, about individuals or groups of people, expediently promoted to advance an agenda. That’s one reason I object to Ms Collin’s article. Misrepresenting, mocking, demeaning (“tricks” “special talents” “superpowers” et al) etc, autistic strengths and actually denying them (both of which she did) looks very reasonable and egalitarian and non-elitist these days.

But this is an inaccurate view of autism, compared to the knowledge we have now. I equally disagree with Ms Ventura’s statements and for about the same reasons (though both Ms Ventura and Ms Collins seem to agree that the public is ignorant and exists only to be manipulated). Making decisions on the basis of either of their positions would have consequences that would not necessarily be good.

At 6:53 PM, Lisa Jean Collins said…
Michelle wrote:”Inaccurate views of autism, however framed, shouldn’t be replaced by other inaccurate views.”By your multiple postings regarding this one essay, which consisted of my thoughts on something, not public policy, I am getting the sense that you feel that your view is THE accurate view. You have established that you disagree with me, with Simon Baron-Cohen, Tony Attwood, Ballastexistenz, Bonnie Ventura; and I’ve seen you disagree with many other people elsewhere. It’s perfectly fine to disagree. I disagree with your interpretation of my piece. It seems pointless for you and I to keep dancing around the notion that you disagree with me and I with you. I get it.

As for the “inaccurate views” of my piece, here’s the last paragraph, which was meant to sum up my point, which you don’t get, because the point I made in the essay actually *affirms* your point, but for whatever reason you can’t see that:

“It [the toy that my NT son, who is a stand-in for “society” or “viewers,” thought was “boring” because it didn’t do anything he considered to be cool or valuable] could go anywhere, do anything, be anything my son might have wanted him to be, [if he had eyes to see it] had he only taken the time to consider its possibilities.[and not assume things based on the externals, not assume that the “boring” toy had nothing special to offer, no special autistic skills, and was a throw-away, AND was not actually part of the other toys, because it was; it was an action figure, but it didn’t “move” or “shoot”; the autistic gifts were more subtle, and hidden] Or, it could have been nothing obvious, nothing discernible.[The autistic gifts are/were still there, but they are not always obvious to the outside world/NT society] It could have [should have, meaning all people on the spectrum should in the ideal world consider themselves to be in this thing together, not splintered off into diffent factions based on productivity or IQ] just been incorporated into the other group of toys he was playing with, and yet out of the action…an onlooker, maybe a watchman.[the really, really, really autistic ones, the ones that some Aspies don’t consider themselves a part of, are watching what is going on].

Where is the “inaccuracy” in this? Again, these are my feelings and opinions. I’m not making policy decisions that are affecting anyone’s lives. I’m writing how I feel about issues that are close to me and close to people I love and care about.

People such as Simon Baron-Cohen and Tony Attwood *are* affecting others, I guess, because their books and research are published and widely disseminated. This is a blog. It’s not meant to be a threat to you or anyone.

At 6:55 PM, Lisa Jean Collins said…
Bonnie,Thank you for your follow up post! You are giving me some things to think about, as if I did not already have enough things to think about.

At 8:48 PM, Michelle Dawson said…
I’m not disputing your feelings, Ms Collins. Whatever you write about your feelings is fine with me. I’m not arguing with your emotions, or with your “thoughts”. You are a superb writer.You write that you feel you know what I’m thinking. That’s not something I can respond to. Your feelings are your business.I can give you a long list of people I agree with. Or character references. Or whatever it takes to make the point that I’m not doing this for fun or because I’m too dumb to understand what you’re saying, or because I’m a lousy person (etc). This is just to show the futility of arguing at this level.

There are ways to kill legitimate discussion. In this case, the very effective use of mockery, sarcasm, etc (“superpowers”, “tricks”, etc), has the effect of discouraging or killing legitimate discussion. This has happened before (in other venues), e.g., the very effective mockery and ridicule of anyone who suggests that AS and autism might be different.

I’m not who determines what “accurate” is. But either everyone is right no matter what they say (and I’m concerned with statements given as fact), or it is possible to a greater or lesser extent to verify things in various ways (science, ethics, history, etc). This is something I tried to encourage, as I’ve done in other areas.

I’m pretty sure I’ve been told I’m not welcome, so I apologize for taking any of your time or space, Ms Collins. I agree that my concerns are irrelevant here.

At 10:06 PM, Lisa Jean Collins said…
Hi again, Michelle,I’m not disputing your feelings,I think you are, Ms. Dawson. Because you seem to be accusing me of mocking autistics, when in reality I was writing about the appetite TV and movie producers appear to feel exists (or else they would not show it) in the general population for seeing images of “autistic superpowers” (e.g., articles on Temple Grandin describing her amazing ability to understand animals and then *at the same time* calling her the “face of autism,” as though other autistic people would have that same gift that she has) or “amazing autistic skills” that are not all that amazing in reality, but only *appear* to be amazing (such as a nearly nonverbal autistic woman having the ability to sing but not to talk).

Ms Collins. Whatever you write about your feelings is fine with me. I’m not arguing with your emotions, or with your “thoughts”.

Ahh, but you *are* arguing with my thoughts. You are saying that my thoughts on an issue are not accurate. I think it’s reasonable to say that you disagree with another person’s thoughts, but I don’t think it’s reasonable to say that another person’s thoughts on a topic are not accurate. A person’s calculation can be inaccurate, but a person’s thoughts about an issue are neither accurate or inaccurate. I can think that some people are elitist and some people are not, or that elitism can hurt other people. I can think that I have been guilty of elitism. I can think that elitism is not a good thing. I can think that some autistic skills are valued by society and some autistic skills are not valued by society, not because the skills are not there, but that they are either not noticed or they are denigrated as being tragically useless. None of these thoughts can reasonably be described as inaccurate.

You are a superb writer.

Thank you.

You write that you feel you know what I’m thinking.

I can’t know what you are thinking. I can only know a fraction of what you are thinking through your writing.

That’s not something I can respond to. Your feelings are your business.

I can give you a long list of people I agree with. Or character references. Or whatever it takes to make the point that I’m not doing this for fun or because I’m too dumb

I don’t think you are dumb. I think you are defensive to the point where you keep thinking that I’m saying something that I’m not. You have not recognized the irony in some of the piece, and you have not been able to tease out what I am saying I agree with versus what I am pointing out that I see in others. The “autistic superpowers” point was a double-edged sword aimed at (1) the public who wants to see something of conventional value when they are watching a segment on autism; and (2) those who are on the spectrum who pride themselves as being above NTs by virtue of their special gifts, leaving the pregnant question: What about autistics who do not have those gifts, and who have what they deem to be fewer skills than NTs–do they who pride themselves in these gifts feel that the “other autistics” would be *below* NTs, then?

to understand what you’re saying, or because I’m a lousy person (etc).

I do not think you are a lousy person. I do not think that you are not getting my essay because you are stupid. I think you are not getting it because you have been burned so many times before by so many people that you think people are out to burn you who are not. I’m not saying you are paranoid, just a bit defensive.

This is just to show the futility of arguing at this level.

The only thing I think is futile is your saying you disagree, my explaining my position and my words, your disagreeing again, my coming back and explaining some more, ad nauseum. Either you could step back and think, “Well maybe I didn’t get the thrust of this essay,” or “I absolutely did get it and I still don’t agree.” Either way we will have to agree to disagree or this will indeed be an exercise in futility.

There are ways to kill legitimate discussion. In this case, the very effective use of mockery, sarcasm, etc (“superpowers”, “tricks”, etc), has the effect of discouraging or killing legitimate discussion.

Again, this was *not in my own voice* but through the eyes of others who are wittingly or unwittingly perpetuating mythologies and prejudices about autistic people.

This has happened before (in other venues), e.g., the very effective mockery and ridicule of anyone who suggests that AS and autism might be different.

Now you are talking about another issue. The issue at hand is how others are perceived and treated, not whether AS is or is not part of the autistic spectrum. I am operating under the assumption that it still is.

I’m not who determines what “accurate” is.

You used the words “accurate” and “inaccurate” many times directly in reference to my thoughts and ideas on this issue versus yours. Here is only one of many quotations:“Inaccurate views of autism, however framed, shouldn’t be replaced by other inaccurate views”But either everyone is right no matter what they say

I am not a moral relativist, and I do believe that there are absolute truths; that being said, I believe that thoughts and ideas are sovereign to each individual, so long as these thoughts are not doing harm to others. It does not harm people to admonish them (and to soul-search and admonish oneself) if they are being elitist; elitism *does* harm those affected by it, if indeed it exists, which I think it does.

(and I’m concerned with statements given as fact),

Not one of my statements was given as fact. They were entirely my thoughts, impressions, and opinions.

or it is possible to a greater or lesser extent to verify things in various ways (science, ethics, history, etc). This is something I tried to encourage, as I’ve done in other areas.

I’m pretty sure I’ve been told I’m not welcome,

That is untrue. The only thing that is unwelcome here is someone coming here to tell me I don’t have the right to think the things I think, or have opinions and express them regardless of whether someone else agrees or does not agree.

so I apologize for taking any of your time or space, Ms Collins. I agree that my concerns are irrelevant here.

You are making it sound like you have been treated unfairly in this exchange. Your concerns are not irrelevant; your work and your activism are not irrelevant. You as an individual are not irrelevant. If I made you feel uncomfortable by repeatedly defending the words that sprung from my thoughts, well…I’m sorry that you feel that way, but this blog exists as a repository for my thoughts and ideas.A few days ago, someone from my group told me something to this effect: It is impossible to please everyone, nor should I try.I agree with that.

At 12:30 AM, Anne said…
MD, when I read Lisa’s essay, I thought it was another way of expressing the same problems you see with Arthur Caplan’s view. Also, I don’t think that Lisa is mocking autistic people. If she’s mocking anyone, it is NT’s. Isn’t it?
At 12:40 AM, ballastexistenz said…
Yeah, exactly.Michelle herself talks about the “shiny aspie” phenomenon.I thought that’s what Lisa was talking about.

Which is why I’m utterly bewildered by the fact that Michelle seems to be jumping down the throat of anyone who brings up the actual elitism that takes place, the kind that Michelle herself has pointed out on a number of occasions, but that apparently none of the rest of us are supposed to talk about without being accused of calling her stupid?

At 12:56 PM, Lisa Jean Collins said…
Hi Anne,You wrote:If she’s mocking anyone, it is NT’s. Isn’t it?

I’m not sure why one might get the impression that the piece was mocking NTs as a group, but Michelle seemed to think that was the case:

though both Ms Ventura and Ms Collins seem to agree that the public is ignorant and exists only to be manipulated

I was expressing, I suppose, a mixture of exasperation and sadness at the way all of us allow ourselves to be manipulated by each other in different ways.

On the one hand I do believe there is an appetite in the general public to see the extraordinary, but ironically there is a simultaneous appetite for images that are sanitized and gussied up, because people do not want to be faced with harsh realities and contradictions. I still feel a little like I’m watching a freak show when I see segments on autism, like the producers want to create the feeling of one peering into a strange other world. The show featured in this essay was better than the ones I have seen in the past, but there were parts of it that still reminded me of the things I didn’t like about the other stories and movies I’ve seen before.

But I see mutual manipulation going on between the Audience and TV, because inasmuch as the audience is being manipulated by the TV, the TV execs are being manipulated by their own preconceived notions of what people want to see, and how much they can really handle, and how emotionally mature they are. Looking at the way movies, cartoons, and sitcoms are made for kids these days, I see the cluelessness in the makers of these shows, thinking they are tapping into the “cool kid scene” while really turning off a segment of children who get the point that TV land believes they are shallow.

Some Aspies have been manipulated by their own insecurities and relentless societal pressure to feel that they must simultaneously prove their worth to society and put down others on the spectrum and NTs in the process.

Some people may have been manipulated and might be manipulating others by the idea of “_____ Pride,” holding that out as good and/or necessary, not realizing that almost inevitably, for a certain segment of the population who is feeling proud, what starts out as feeling proud turns into feeling prideful and arrogant toward others, even causing harm to them. So “Black is Beautiful” can turn into the Black Panthers.

Getting back to the essay. My son, who has the unenviable role of standing in for NTs as a group, is not the object of derision or mockery. I expressed that I understood why he felt the way he did about his action figures, and that I have also felt the pleasure of seeing things that are fast, powerful, and cool. I expressed the feeling of hypocrisy that wells up when you are telling someone to use his imagination, knowing that it’s easier not to. I said at the end that my son (i.e., NTs) did not reject the “boring” toy because he was not smart or creative. It was because he had grown accustomed to a particular kind of toy and was no longer able to see the value in the toy that didn’t seem to do anything interesting or useful.

But the story did end with the wish that my son could have included the boring toy in his collection, playing with all of them. This is still not ideal, though, because it still highlights the ultimate manipulation, being that NTs are still almost totally in control of the autistic images (“toys”) that other people see. Until autistic people are writing, producing, and broadcasting images of themselves on the screen, the manipulation will probably continue.

But mocking NTs? No. That would be elitist.

At 6:48 AM, starmuser said…
Thanks for a brilliantly written piece of work. What a great treasure to stumble across this blog just when I’m struggling as a parent and a writer to find where the line is drawn between “accommodating” for my children’s neurological differences and trying to “normalize” them into something they never chose to be.Since Terri Schiavo’s struggles, I’ve spent a lot of time worrying–and writing–about who has the right to determine the “worth of lives.” As I struggle with writing about a fictional court battle raging around a comatose boy with autism who could be revived, but whose father feels him better off “dead” than living as autistic, its good to read what others are thinking.As a parent, I’ve made plenty of mistakes along the way. I’ll probably make a good many more.

Do I agree with every word you wrote? Probably not, but I love your “no bs” approach to your subject matter, and I always appreciate a compelling argument!

At 6:55 PM, Anonymous said…
As the mom of an ordinary child w/ autsim, I am frequently asked what her gift is. I always resopond that the gift is the autism and it truly is (for better, for worse and for the ordinary struggles of life with autism.)
At 1:43 AM, Anonymous said…
Hi there,
I have enjoyed your essays, and find them thought provoking. So much has changed in 35 years, and so much is the same. I grew up with an autistic sister, and also have a brother who is probably on the spectrum. It is different to be a parent than a sister. I never imagined a person different than the sister I had, it was who she was, and that was it. There was never a fork in the road on the path to what could have been. She has now
been living on her own for many years, but there are still some rough spots. Humor, love, and realism all are important as the
future is in every day trying to find a way for you to bring the world a better understanding of your children and vice-versa.
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2 Comments

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  2. Outlander! or, Whose Neurodiversity is it, Anyway? « Sweet Perdition said,

    […] a long time, I believed that my neurology was valuable because of the marketable skills it gave me. (“Yeah, I may not be able to find the grocery store alone or follow the flow of a […]

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