“She’s autistic.” I explained to the cashier as ten year old Peggy ran her hand lovingly along the wall of the skating rink and screeched about Teletubbies.
“Artistic?” The cashier was confused in a way that few people would be now, six years later.
Autism has become a well known word for a condition that appears to be becoming increasingly common. It is a word that many parents worry about and that many researchers struggle to understand and cure. But what does the word autism mean to autistic people? Do they see it as something to cure?
Many autistic people view autism as central to their identity and dislike the idea of attempts to cure a way of being which they regard as simply different, not worse, than “typical development.” Just as Deaf individuals struggled to demonstrate to the hearing world that Deafness was not just a lack of hearing but a culture, many autistics seek out a culture of autism where neurodiversity, or the idea that neurological differences are not deficits, is valued.
In 1998, journalist Harvey Blume speculated that “neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind.” He further speculated that “the impact of the Internet on autistics may one day be compared in magnitude to the spread of sign language among the Deaf.”
We are currently conducting an Internet survey to examine how autistic people view autism and whether the Internet helps autistic people communicate and learn about neurodiversity. Preliminary data from 190 autistics and 143 “typically developing” people (neurotypicals) suggests that the two groups view autism very differently. Autistic participants are asked how they feel about being autistic while neurotypicals are asked how they think they would feel about being autistic. Autistics are less likely than neurotypicals to feel frustrated or confused and more likely to feel happy, proud and content.
As might be expected given their more positive viewpoints on autism, autistic people have different ideas about what the parents of autistic children should focus on than neurotypicals do. They are less likely to think that parents should seek a cure, help their children control unusual behaviors, learn to act typical, interact with people in person, or learn what caused their child to be autistic.
It appears that many autistic people are not that interested in finding a cure for autism or in learning why autism occurs. To members of the neurodiversity movement, autism is not something to eradicate. Not surprisingly, autistics are more likely to know about neurodiversity than neurotypicals. Interestingly, when considering only those people who know about neurodiversity, autistics are more likely to have learned about it on the Internet than neurotypicals. Thus, the Internet is providing autistic people in particular with information about neurodiversity.
Autistic people also use the Internet differently than neurotypicals do. They use social networking sites like Facebook less frequently than neurotypicals. Many people use social networking sites to supplement their offline relationships but autistic people may be more interested in other ways of communicating online that are less like offline communication. Autistic people are more likely than neurotypicals to use the Internet to share their expertise, meet people with similar interests, meet people like them, be part of discussion groups, and to post on forums and blogs.
Not only do autistic people use the Internet for different social purposes than neurotypicals, they are more likely to say that it helps them communicate. They are more likely to say that the Internet allows them to express their true selves, gives them time to think, choose who they talk to, and practice social interaction. As might be expected from all the communicative benefits they believe the Internet provides, autistic people are more likely to think that autistics should spend more time on the Internet than neurotypicals think they should.
It appears that autistic people do not think autism is a word to fear but rather a different way of being. It also appears that Harvey Blume was onto something: the Internet may be where a new culture of neurodiversity is developing. It remains to be seen how this culture impacts the lives of neurotypicals, high functioning autistics, and people like Peggy who may never know enough language to seek out this culture.
The value of this new culture can best be illustrated by a description of neurodiversity provided by an autistic participant in our survey: “Think of an enormous herd of gazelle, thousands of them, all penned up, then let loose across an open plane. The herd will stick together, and front runners will appear (some people are better developed than others), but it will also widen into sort of a comet like shape. That widening is is neurodiversity. It’s not clear when strains emerge which is stronger or better, and environmental changes require adaptation. Autism is an adaptation, a different kind of brain. It and others form neurodiversity.”