What is Autism Culture?
A culture is a set of ideas shared by the members of a group of people. It can be based around genetic relationships, common experiences, common goals, or anything else that groups people. Even universities and corporations have cultures. And so does the autism spectrum.
With the Internet comes the ability to talk to each other--even to those who can't use spoken words, and, through family and friends, to those who don't use words at all. As we've begun to communicate, we've formed ideas that we can access more easily than people who aren't autistic can. And that's the beginning of a common culture.
I don't mean here that we all believe or experience the same things; that would be ridiculous. It is more that we all use the same concepts. For example--one person may be desperate for a cure; another person may declare they would rather die first; but both are part of the same culture because they both understand that curing autism is a very significant issue. Even someone arguing that it should not be significant is accessing that same idea of cure as a divisive issue, either desirable or not.
It's a very nebulous thing, this new culture. It hasn't quite formed a distinct shape yet. You can see it in the language we use. Some people say "Aspie" and others "Aspergian"; some people mean "neurotypical" as "non-autistic" and others mean it as "neurologically average", excluding non-autistic people with brain-based differences. Right now it's more of a loosely connected web of subcultures than one big culture. There's the intersection of autism and the bigger developmental disability culture (which is, by the way, more well-established than ours; just look at People First). Then there are the people who went to mainstream school, who tend to focus on bullying and exclusion, and the autism-as-disability group who focus on autism as a disability rights issue. Each forum and group has its own set of ideas to contribute.
It's interesting to watch these ideas crystallize as the months and years pass. Our library of ideas is like half-mixed pancake batter, with bits of flour still dry and milk still sloshing around. And yet as time passes, those loosely bound groups join hands, and the ideas we share become better connected. I remember when it was common to consider Asperger's to be not on the spectrum at all, to define disability as necessarily severe, or to use "...but I'm really smart" as a way of justifying one's existence despite disability. We're starting to connect those subgroups, the developmental disability people and the nerdy-gifted people, and when someone goes to put down one group or the other, people call them on it.
"AS/HFA" and "Autistic" used to look at each other warily, and there's still some of that, but now they're starting to merge, probably because we're realizing just how much we do have in common. I remember when I was first diagnosed I focused on the idea that autistic people could be talented and refused to see myself as disabled. Now, I know I'm disabled, I identify with "developmental disability", and I understand that it's okay to ask for help--that, indeed, it's my right, that it's perfectly legitimate to request help with daily living skills so that you can finish a college degree. I've learned so much from the people they label "low-functioning" that I'm a little bewildered by the idea that I used to think we were fundamentally different just because I can usually talk.
Disabled doesn't mean incapable; gifted doesn't mean you can do everything. As a gifted person with a moderate developmental disabilities, I've come to understand that, like many autistics, I'm floating in the middle between subgroups; but as autism culture starts to work out the lumps and connect the ideas, more and more people are realizing that they're in the same situation I'm in, that the spectrum isn't either-or. We're seeing ourselves in people who, in the outside world, would be put in completely different sociocultural boxes.
We will probably always have those subgroups and disagreements. Because we're human, there'll always be drama, arguments, even hatred and hostility. But as time goes on and we exchange ideas, we're building a library of information that is the foundation of this new culture.
With the Internet comes the ability to talk to each other--even to those who can't use spoken words, and, through family and friends, to those who don't use words at all. As we've begun to communicate, we've formed ideas that we can access more easily than people who aren't autistic can. And that's the beginning of a common culture.
I don't mean here that we all believe or experience the same things; that would be ridiculous. It is more that we all use the same concepts. For example--one person may be desperate for a cure; another person may declare they would rather die first; but both are part of the same culture because they both understand that curing autism is a very significant issue. Even someone arguing that it should not be significant is accessing that same idea of cure as a divisive issue, either desirable or not.
It's a very nebulous thing, this new culture. It hasn't quite formed a distinct shape yet. You can see it in the language we use. Some people say "Aspie" and others "Aspergian"; some people mean "neurotypical" as "non-autistic" and others mean it as "neurologically average", excluding non-autistic people with brain-based differences. Right now it's more of a loosely connected web of subcultures than one big culture. There's the intersection of autism and the bigger developmental disability culture (which is, by the way, more well-established than ours; just look at People First). Then there are the people who went to mainstream school, who tend to focus on bullying and exclusion, and the autism-as-disability group who focus on autism as a disability rights issue. Each forum and group has its own set of ideas to contribute.
It's interesting to watch these ideas crystallize as the months and years pass. Our library of ideas is like half-mixed pancake batter, with bits of flour still dry and milk still sloshing around. And yet as time passes, those loosely bound groups join hands, and the ideas we share become better connected. I remember when it was common to consider Asperger's to be not on the spectrum at all, to define disability as necessarily severe, or to use "...but I'm really smart" as a way of justifying one's existence despite disability. We're starting to connect those subgroups, the developmental disability people and the nerdy-gifted people, and when someone goes to put down one group or the other, people call them on it.
"AS/HFA" and "Autistic" used to look at each other warily, and there's still some of that, but now they're starting to merge, probably because we're realizing just how much we do have in common. I remember when I was first diagnosed I focused on the idea that autistic people could be talented and refused to see myself as disabled. Now, I know I'm disabled, I identify with "developmental disability", and I understand that it's okay to ask for help--that, indeed, it's my right, that it's perfectly legitimate to request help with daily living skills so that you can finish a college degree. I've learned so much from the people they label "low-functioning" that I'm a little bewildered by the idea that I used to think we were fundamentally different just because I can usually talk.
Disabled doesn't mean incapable; gifted doesn't mean you can do everything. As a gifted person with a moderate developmental disabilities, I've come to understand that, like many autistics, I'm floating in the middle between subgroups; but as autism culture starts to work out the lumps and connect the ideas, more and more people are realizing that they're in the same situation I'm in, that the spectrum isn't either-or. We're seeing ourselves in people who, in the outside world, would be put in completely different sociocultural boxes.
We will probably always have those subgroups and disagreements. Because we're human, there'll always be drama, arguments, even hatred and hostility. But as time goes on and we exchange ideas, we're building a library of information that is the foundation of this new culture.