Until recently, research and discussion about Asperger’s Syndrome has been almost entirely child-centered. What’s taking place these days is a kind of balancing out, with adults coming forward and saying “Hey, we’re here. What do you think happens to kids when they grow up? They don’t just disappear.” That might not ever have happened without the internet.
Anyone who grew up before early diagnosis of Asperger’s became common made their way through life as best they could. Some coped, and some went under, depending on the severity of their problems, the quality of care givers, and their own inner strength and intelligence. What is changing the lives of people on the spectrum is the internet and the availability of information that leads to the awareness that you aren’t alone with whatever condition you may have.
For the first time, it doesn’t matter if you’re too poor to go to experts for testing and diagnosis, or if you live where such experts aren’t even available. It doesn’t matter what other people have told you in the past about yourself and the future that’s in store for you; you have a chance to do your own research, learn the facts, and determine your own future.
Thanks to the internet, scientists now have access to populations too geographically scattered to be studied in traditional ways. They can collect information about conditions such as face blindness and Asperger’s, and revise their beliefs and understanding. One significant discovery that might never have been made without the internet is that beliefs about the rarity of some conditions, and about their gender balance have no basis in fact. Face blindness isn’t nearly as rare as was once believed, and is often passed down genetically rather than always being a result of physical trauma. The autism spectrum,including Asperger’s, is still dominated by males, but the gap is closing quickly with the realization that girls and women present so differently that they have been invisible to researchers.
The internet is the great communicator. People who have been isolated with their problems can meet others with whom they share experiences and information, and offer and receive support. Discussion boards bring large numbers of people together, and blogging is increasingly a means of personal expression for both autistics and aspies (people with Asperger’s Syndrome). One result is a corrective balance that’s bringing the facts about Asperger’s into the spotlight. The public presence of large numbers of adults with Asperger’s, many of whom are living lives not much different from the “normal” population, will slowly but surely shift the general perception of Asperger’s as a condition that’s always highly disabling. For parents with newly diagnosed children, it will be possible to find successful aspies who can serve as models rather than despairingly wonder what kind of grim future is ahead for their grown children.
We often see the word “revolution” applied to the internet, but it seldom refers to the transformative power it has for people’s lives. That power may prove to be more important than the commercial and technical wonders we’re most familiar with.