Full Spectrum
I was reading over the interview and some comments again this morning, and there was one thing that I thought was just a little misleading, needing more explanation than you can provide in thirteen minutes of audio: The implication that autistic people are valuable because we add useful techie genes to the human gene pool.
Autistic genes, and other neurodiverse genes, do contribute to innovation, of course, and more--art, music, pattern-recognition, detail-orientedness, and possibly (if Temple Grandin is right) empathy with animals. Neurodiversity--not just autism, but all the other quirky and sometimes disabling brain conditions out there--makes us stronger, as a species, because it gives us a wider range of experience and cognition to draw on.
But I want to make something absolutely clear: The value of an autistic person has nothing to do with how skilled he is. "Existing because of natural selection" is not an indication of value; it's simply an indication of existence. What does determine our value is the fact that we are human beings--all of us, from Albert Einstein (often theorized to have been autistic) to one of my mom's most severely disabled clients, who hasn't learned speech yet and may never, but who loves his parents, speaks his mind (without words, granted), and learns and grows like any other human being.
Value has nothing to do with skill
People sometimes compliment me on being good at something, occasionally even stating, "You shouldn't let them label you. You're too good at (whatever talent they're complimenting) to be autistic." I'll leave aside the fact that intelligence and talent are a great deal more complex than that to ask: Why is it that "good at something" and "autistic" are mutually exclusive? I think it's part of the leftover prejudice from back before we knew what we know today about disability: The idea that, if you're disabled, you're not allowed to be good at anything. You're not allowed to excel, because if you do, you're subtly threatening peoples' sense of superiority. "But you shouldn't call yourself disabled! Look at what you can do!"
Nor is an autistic person who is talented in some arbitrary area in any way superior to someone who isn't talented in that area. I can communicate in writing; does that make me superior to somebody with dyslexia? Nope. I can live on my own (except for a few things I still need help with, in unusual circumstances); does that make me superior to someone who needs 24/7 care? Also no.
And it's not even like there's some kind of an orderly progression from "mild" to "severe" in autism. I mean, yeah, some of us are a great deal more disabled than others (it is a spectrum condition, after all); but when it comes to individual talents, we're all over the place. You can't predict from one skill what some other skill will be--autistics tend to have skills all over the place. I remember when I was in third grade, when my skills were probably the most scattered. I was reading at a college level, doing first-grade math, singing (and carrying a tune) as well as a teenager, and had the interpersonal skills you might expect of someone maybe eighteen months old. I know people who are labeled "very low functioning" who can do things I can't do, and it's not just savant syndrome, either. We've just got very odd brains, with very scattered skills. For autism, that's normal.
No such thing as a worthless life
I also beg to differ with something that Simon Baron-Cohen said in the interview: the idea that natural selection still doesn't offer an explanation for autism that is "completely disabling".
Two things: First, there's no such thing as "completely disabling" autism. Show me somebody who's completely disabled, and I'll show you somebody who needs to be wheeled to the morgue. Everybody contributes to the world, whether they're engineers, grocery baggers, or just members of their families and communities. People contribute just by existing.
When Joe Average sees that Jane Autistic is being included in society despite that she cannot earn enough income to provide for herself, he realizes that this society has a safety net. It leaves Joe Average free to specialize and become an expert in one thing, rather than spending all his time on making himself as self-sufficient as possible--because he knows that, were he to fall short in some skill or another, society would be willing to fill in the gap. Without altruism, a society cannot advance because everyone is looking out only for himself. If society does not value its most vulnerable members, people will spend so much of their energy on not becoming vulnerable that there is little left over for innovation.
Second: There's a pretty simple natural-selection explanation for autistic people who don't invent fire or make technological advances. When you have a genetic trait that's beneficial to a society, but which comes along with a more severe form that eliminates the benefit, you'll keep the more severe form because it uses the same genes as the milder form, and eventually enough genes will come together (Google "genetic loading" if you're interested). Sickle-cell trait, which offers protection from malaria, is an example of such a phenomenon: Two genes, untreated, and you die. One gene, and malaria can't get a good hold on you. That's why the sickle-cell gene is so common.
Leave No One Behind
Ethically, of course, it's a no-brainer: People with severe disabilities are just as valuable as people with mild ones, or people with no disability at all. Leave aside utilitarianism, and focus on the Golden Rule, and your conscience simply doesn't let you claim that one person is worth more than another. Everyone has rights--the absolute same rights as everyone else.
But sometimes, I see people who say, "I'm high-functioning. I'm not like those low-functioning people over there." And then they advocate for the rights of high-functioning people only, by whatever arbitrary standard they're using today to define "high-functioning", because at some level down deep, they're still trying to justify their existence. They feel like they've got to say, "I'm valuable because I can do X, Y, and Z", and distance themselves as much as possible from "disability". They don't realize that the solution is to challenge the disability stereotype that they're taking for granted. And they don't realize that it's valid to say, "I'm valuable," no strings attached, with disability or no disability completely irrelevant.
When I say I want autistic people to have the same rights as everyone else, I mean all autistic people. Everyone has the right to be listened to, to be respected as a person, to be free from abuse and neglect. Everyone has the right to go to school, to be hired for the jobs they can do, to be free from prejudice. Everyone has the right to be himself, and not to be forced to be someone else's idea of who he ought to be. When we advocate for autistic rights, we have to remember that. We have to advocate for the rights of ALL autistics--not just the ones that society finds interesting, intelligent, or inspiring.
Autistic genes, and other neurodiverse genes, do contribute to innovation, of course, and more--art, music, pattern-recognition, detail-orientedness, and possibly (if Temple Grandin is right) empathy with animals. Neurodiversity--not just autism, but all the other quirky and sometimes disabling brain conditions out there--makes us stronger, as a species, because it gives us a wider range of experience and cognition to draw on.
But I want to make something absolutely clear: The value of an autistic person has nothing to do with how skilled he is. "Existing because of natural selection" is not an indication of value; it's simply an indication of existence. What does determine our value is the fact that we are human beings--all of us, from Albert Einstein (often theorized to have been autistic) to one of my mom's most severely disabled clients, who hasn't learned speech yet and may never, but who loves his parents, speaks his mind (without words, granted), and learns and grows like any other human being.
Value has nothing to do with skill
People sometimes compliment me on being good at something, occasionally even stating, "You shouldn't let them label you. You're too good at (whatever talent they're complimenting) to be autistic." I'll leave aside the fact that intelligence and talent are a great deal more complex than that to ask: Why is it that "good at something" and "autistic" are mutually exclusive? I think it's part of the leftover prejudice from back before we knew what we know today about disability: The idea that, if you're disabled, you're not allowed to be good at anything. You're not allowed to excel, because if you do, you're subtly threatening peoples' sense of superiority. "But you shouldn't call yourself disabled! Look at what you can do!"
Nor is an autistic person who is talented in some arbitrary area in any way superior to someone who isn't talented in that area. I can communicate in writing; does that make me superior to somebody with dyslexia? Nope. I can live on my own (except for a few things I still need help with, in unusual circumstances); does that make me superior to someone who needs 24/7 care? Also no.
And it's not even like there's some kind of an orderly progression from "mild" to "severe" in autism. I mean, yeah, some of us are a great deal more disabled than others (it is a spectrum condition, after all); but when it comes to individual talents, we're all over the place. You can't predict from one skill what some other skill will be--autistics tend to have skills all over the place. I remember when I was in third grade, when my skills were probably the most scattered. I was reading at a college level, doing first-grade math, singing (and carrying a tune) as well as a teenager, and had the interpersonal skills you might expect of someone maybe eighteen months old. I know people who are labeled "very low functioning" who can do things I can't do, and it's not just savant syndrome, either. We've just got very odd brains, with very scattered skills. For autism, that's normal.
No such thing as a worthless life
I also beg to differ with something that Simon Baron-Cohen said in the interview: the idea that natural selection still doesn't offer an explanation for autism that is "completely disabling".
Two things: First, there's no such thing as "completely disabling" autism. Show me somebody who's completely disabled, and I'll show you somebody who needs to be wheeled to the morgue. Everybody contributes to the world, whether they're engineers, grocery baggers, or just members of their families and communities. People contribute just by existing.
When Joe Average sees that Jane Autistic is being included in society despite that she cannot earn enough income to provide for herself, he realizes that this society has a safety net. It leaves Joe Average free to specialize and become an expert in one thing, rather than spending all his time on making himself as self-sufficient as possible--because he knows that, were he to fall short in some skill or another, society would be willing to fill in the gap. Without altruism, a society cannot advance because everyone is looking out only for himself. If society does not value its most vulnerable members, people will spend so much of their energy on not becoming vulnerable that there is little left over for innovation.
Second: There's a pretty simple natural-selection explanation for autistic people who don't invent fire or make technological advances. When you have a genetic trait that's beneficial to a society, but which comes along with a more severe form that eliminates the benefit, you'll keep the more severe form because it uses the same genes as the milder form, and eventually enough genes will come together (Google "genetic loading" if you're interested). Sickle-cell trait, which offers protection from malaria, is an example of such a phenomenon: Two genes, untreated, and you die. One gene, and malaria can't get a good hold on you. That's why the sickle-cell gene is so common.
Leave No One Behind
Ethically, of course, it's a no-brainer: People with severe disabilities are just as valuable as people with mild ones, or people with no disability at all. Leave aside utilitarianism, and focus on the Golden Rule, and your conscience simply doesn't let you claim that one person is worth more than another. Everyone has rights--the absolute same rights as everyone else.
But sometimes, I see people who say, "I'm high-functioning. I'm not like those low-functioning people over there." And then they advocate for the rights of high-functioning people only, by whatever arbitrary standard they're using today to define "high-functioning", because at some level down deep, they're still trying to justify their existence. They feel like they've got to say, "I'm valuable because I can do X, Y, and Z", and distance themselves as much as possible from "disability". They don't realize that the solution is to challenge the disability stereotype that they're taking for granted. And they don't realize that it's valid to say, "I'm valuable," no strings attached, with disability or no disability completely irrelevant.
When I say I want autistic people to have the same rights as everyone else, I mean all autistic people. Everyone has the right to be listened to, to be respected as a person, to be free from abuse and neglect. Everyone has the right to go to school, to be hired for the jobs they can do, to be free from prejudice. Everyone has the right to be himself, and not to be forced to be someone else's idea of who he ought to be. When we advocate for autistic rights, we have to remember that. We have to advocate for the rights of ALL autistics--not just the ones that society finds interesting, intelligent, or inspiring.
If it's OK with you I would like to quote you in my correspondence with my son's school.
Edited at 2010-08-25 05:56 pm (UTC)
FYI, I've linked to a couple of posts of yours in my LJ, because I wanted to share how good your blog is. I hope that's OK, if not I'm happy to change it to something more acceptable.
Well said!
Regarding 'value', I would argue that the real value of those commonly labeled as autistic is the ability to view the world in a different way. Most individuals and communities have a strong tendency to look at things in only one way and don't look outside their preconceived notions. Having a person who can provide a substantively alternate perspective is to be highly valued. That this fact isn't always recognized or appreciated is a shortcoming of the community, not the person who sees things differently.
(Anonymous)
Call Me Autistic
(Anonymous)
Worth in Society
One of the first questions most people ask is "What do you do for a living?" Simone worth is determined by having a job and a source of income. Austic people has difficultly holding a job or keeping one (frequently due to social skills) Poor social skills frequently lead to discrimination in other areas. We have to live in the world we are born in. But we can try to change it
Evolution in the narrative
Your answer appears to be the same as mine, based on heredity, not perception. But I wonder, why do humans make the assumption that humanity is better?
In the field of communication we call this a self-serving bias. But I feel, as a student of communication, that all beings are sending out signals, sensing them, and trying to achieve some sort of harmony with the world around us. The only problem we face in understanding each other is the "noise" of preconceived notions and prejudice.
I hope we can open our minds a little more before we make contact with any truly "alien" species.
(Anonymous)
I couldn't agree more
(Anonymous)
Yet, I feel a definitely kinship with you. You *understand* what it was for me growing up. My social adaptation is strictly a result of what I've been able to learn from my second and current wife.
Please keep speaking out for those of us whose intellect is second to our social intelligence.
I never quite thought of this before, but it makes some sense that if autistic people gain acceptance, their nerdy broader-autism-phenotype "cousins" may gain more acceptance as well...
(Anonymous)
Love doesn't discriminate
(Anonymous)
Re: Love doesn't discriminate
(Anonymous)
"Value"
Anyway, thanks for listening (again) and letting me hang out. Keep on writing and being awesome, and I'll keep visiting (but I won't be constructing a LiveJournal ID... I already have too much to keep track of haha)
Keep on keepin' on!
<3 Kelly
(Anonymous)
Thanks for being so descriptive and honest
(Anonymous)
A friend passed along your blog to me this evening and I've already spent hours reading it. My therapist suggested that I may have asperger's. I felt I had too many other psych problems to add another so I dropped all discussion of it. Tonight you have opened my eyes. I'm a little in overload but but not so much that I won't continue to investigate it. Thank you for your concise writing. It helps a lot.
Thanks for this - several important things very well said.
(Anonymous)
"Value" of human beings
(Anonymous)
I find myself thinking of "typical" folks when this "value of a person" argument comes around. There are PLENTY of "typical" people who aren't "contributing" to society and who aren't particularly skilled. Does that make THEM worthless? Is the person who WAS skilled but through an accident now has traumatic brain injury worthless?
We, all of us, have a soul. THERE is our worth.
thanks for sharing your thoughts - you have a way of explaining things in a way that will make people re-examine their current thinking.
Jen Strange
www.jenjen.typepad.com/strange
(Anonymous)
Such wisdom!
(Anonymous)
(Anonymous)
Hold That Thought !
Best, Jon C
(Anonymous)
"labels"
(Anonymous)
Considering the natural selection explanation for the presence of severe autism, I don't see how it is just or even stable for such intellectual genetic traits to be concentrated among an ever smaller group of individuals, while many others are getting forms of the genes that come with diminished mental strength, under this uncontrolled system of genetic inheritance. It's not fair that many have to suffer mental impairment so a few can gain hoards of intelligence. I think many would like a better system, like one where all are guaranteed basic skills, and where all would have access to the intellectual genes in the population.
The value of a person doesn't have much to do with this. I'd rather see a focus on natural human needs. Without having the privilege of getting to substantially contribute to society, one isn't truly included in it in an equitable way, nor is there as much of a chance for equitable and symmetrical relationships. It isn't fair to have to be vulnerable. The rights being affirmed along with affirming value are too narrow to include the area of standard of living. The mental disability itself causes a lower standard of living, which leads to suffering through deprivation, dependence, and stress. Any institutional declarations of value and respect don't make any of that feel less worse.
lurker
So in a way, autistic people are more like the extreme version of a phenotype that fades into the typical. There's probably a balance between how much autistic genes "concentrate" in a smaller group (the Silicon Valley effect, for example), and how much they spread out in the general population, which has a higher reproductive rate.
And, yeah, the value of a person's got nothing to do with genetics. However, a "substantial contribution" does not need to be in terms of financial gain or technological innovation. It can come in the form of being a part of a family, a part of a community, or by simply being there as a living example of a person who is severely disabled and yet accepted by others.
Mental disability does not cause a lower standard of living. Social inequality does. Please, please don't fall into the trap of blaming the minority group for their own marginalization. Granted, if someone's best skill involves sweeping floors, then he likely won't become rich; but he also shouldn't be suffering "deprivation". If he does, there's something wrong with society, because we need clean floors, too.
The relative value placed upon people with more severe disabilities vs mild (using the language of the abled, there, as it's how they make that judgment for us) is going to cost me my job.
I quit my last job in April. It was psychologically and emotionally damaging for me (not sure if you remember, but I worked for a kids' acute psych hospital). I was hired about three weeks ago at a local nonprofit that runs group homes for people with developmental and intellectual disabilities. It sounded awesome: they were people-first using (which, while I personally prefer autistic vs has autism, I appreciate in a broader context as an attempt to be polite), and stressed that everyone is there under their own volition (and that of their guardians, should they require such). The adults all work in some capacity. Many work in a program where I exist basically to supervise and keep them on task (it's super boring, no wonder they don't want to pay attention!).
I found out mid last week that it's a sheltered workshop. My residents get paid tiny fractions of minimum wage. I get paid a little over it. Because I did not disclose my autism, because no one ever labelled me "retarded," I am worth 4 to twenty times as much per hour as my residents. They do good work and are valuable, wonderful people. They deserve to be paid appropriately. I am so upset that the nature of the payment system wasn't disclosed to me before I signed a contract to work there that I am now willing to break that promise if I can find other work.
All humans have value. And this is not Animal Farm. No one is worth more than others.
-- Wendy @ autismisatrip.com
(Anonymous)
Thanks
later and love, artie
(Anonymous)
When I first held my son
That was the correct one though. Now at age 5, He is mostly affected by his autism in that he is largely mute, which is frustrating to him when he wants to communicate, and to us when he screams and we don't know if he his sad, happy, hurt... Sometimes the context helps, of course. But both are a significant hurtle for developing friendships with playmates. He does smile,copy and laugh at other children, when they play on the toys he enjoys. And of course we are still bonded. Thank you for your writings.
(Anonymous)
Thank you!
Thank you for being who you are.
(Anonymous)
Thank you, thank you, thank you!
Value has nothing to do with skill?
You sound like the kind of leftleaner I want to distance myself from. Everybody is great and special and we all should have a bazillion kids because life is so good! Blech. This attitude is going to destroy humanity, not save it.
Re: Value has nothing to do with skill?
Humans are, for the most part, cooperative creatures. When it comes to making the world better, it usually takes more than one person to do it. Therefore, it seems to me that the answer to our problems is to strengthen our society, to take care of those who are weaker, so that we can allow everyone--not just those who are self-sufficient survivalists--to contribute their skills. The more we take care of each other, the more we can specialize. Humanity has done great things because we have become interconnected to the point that specialists can thrive.
I don't see where this connects to having a lot of kids, though...?