The History of the OASIS Web site and Forums

Our son was eight years old in 1993 when we first learned of the term Asperger Syndrome. We had not heard it from any of the score of professionals to whom we had turned for help throughout the years when we wondered and worried about his particular difficulties and differences. Instead, a friend, who also knew something about autism had the courage to hand us a copy of a relatively new publication titled AUTISM AND ASPERGER SYNDROME by Uta Frith and say, “Please read this. It reminds me of your son.”

When I put down the book, I knew that I had found an explanation that finally made sense. Something that helped me to understand that what was happening to my son and to our family wasn’t his fault or the fault of my parenting– as so many people, professionals, friends, and family members had so hurtfully suggested. He was not a “bad” child and we were not “bad” parents.

I would like to say that when I finally learned the news, I hit the ground running. But that would be a lie. What really happened is that I hit the ground with a huge splat. I can’t remember ever being so frightened. My son, whom I loved more than anything in the world, had a problem that could not be fixed if I would only relax, stop hovering, discipline him properly, stop trying to be his friend and act like a mother, pay more attention, pay less attention, spank him, or any follow any number of the “helpful” suggestions offered to me by well-meaning professionals, family and friends. Granted, those were all terrible ideas, but at least none of them ever suggested that my son’s problems stemmed from a neurological disorder about which no more than a handful of people around the world knew anything.

While the pain of those comments and others will never be forgotten, I’ve learned that there was nothing in their personal experience that could have allowed them to understand that my son’s behaviors were anything other than the result of incompetence – ours at parenting and his at being a “good” boy. They simply did not know. As I soon learned, however, there was a world of “experts” out there who knew just about as much. Or as little. One would think that finding a name for our son’s behaviors would translate into finding some help and answers. One would be wrong. Our son’s doctor had never heard of it, neither the library nor the bookstore had a book on it, the local autism group had “heard” of it but did not have any information, and calls to local hospitals resulted in them telling me that the condition was “rare” and they had never seen a child with the diagnosis. How was this possible? The realization that we were alone with this disorder, diagnosis, whatever it was, induced a level fear and frustration that after all these years I still cannot explain.

In 1994, about six months after we’d first heard the term Asperger Syndrome, the American Psychiatric Association officially listed Asperger Disorder in the DSM-IV. Doctors agreed that AS was the best diagnostic “fit” for our son. Still, they had no idea what we should do. Once again we were alone. Six months later we arranged for our son to have a full psycho-educational evaluation and at this time the psychologist suspected Asperger Syndrome. Three months after that an appointment with a children’s neurologist confirmed the diagnosis. However, the most any of these professionals could offer were vague, general suggestions and a pat on the back with a reminder that it was not our fault. His teachers were more than willing to help, but they were also in the dark as to why he was behaving the way he was. No one had any answers and I did not know what to do. So what I did instead was cry- and I continued to cry for a very, very long time.

One evening on a whim I decided to sign on to America Online, then a relatively new service. I knew nothing about our new home computer, and about all I could do with it was play solitaire and Tetris. I’d never heard of e-mail, I didn’t know what a web page was, and the internet was someplace much too “scary” for a non-technical stay-at-home mom like me.

After signing on, I found my way to the disability forums and posted messages asking if anyone had heard of Asperger Syndrome. Within a day, I’d received a message from a woman named Judy who told me that she had a son who was diagnosed with AS and that I was not alone. One other mother, one other child in the world. I was overjoyed! I spent literally the next two days reading through message boards, leaving messages, and sending and answering e-mail. Finally! I’d found a few other families who understood.

Over the next several months, I was invited to join a small e-mail group for parents of children with a variety of pervasive developmental disorders. At the same time I met another mother online and we began collecting names of other AS families with the goal of convincing AOL that there were enough interested people to open a chat specifically for Asperger Syndrome. Every time we found someone, we invited them to join the e-mail group. After several months, the AS families formed their own group. As the size of the e-mail list grew, we shared what few resources there were available at the time. Most importantly we shared support and understanding. We “got it.” We knew and understood what other families were experiencing. A few months later, I approached the University of Delaware, where my husband is a faculty member, to ask if they would be willing to donate server space so that I could automate the e-mail list. They generously agreed to do so and offered me space on their server for the list and for a web page. I was thrilled. And terrified. I had no idea how to make a web page and at that time there were no programs that automatically formatted web sites.

Fortunately, Ted Whaley, who is the parent of a child diagnosed with hyperlexia had begun a web page for AHA (American Hyperlexia Association) came to the rescue. He volunteered to help me get started and with his guidance and a copy of HTML FOR DUMMIES, the Asperger Syndrome Resources web page was launched in December of 1995. It was renamed OASIS (Online Asperger Syndrome Information and Support) several months later in 1996. OASIS and the new e-mail group, as-support, quickly became the central meeting place for families whose children were diagnosed with Asperger Syndrome. Any information on AS and related diagnoses, including conferences, parenting ideas, support services, educational resources, and laws were shared among members and eventually placed on the web page.

As word of the diagnosis spread, more families, adults with AS, and professionals passed through OASIS and the larger the e-mail group grew. By 1997 the as-support e-mail group had become so large it was moved to server more capable of handling the ever-increasing quantity of correspondence between families. At that time I turned over moderation to other families and decided to focus my attention on the OASIS web page. By 1998, I’d added a public message board to OASIS and in the summer of 1999 opened the private and moderated OASIS Message Board and chat room support forum. I also added the additional URL www.aspergersyndrome.org, so that families would be more likely to find OASIS through a web search.

In the spring of 2001, Patty Romanowski Bashe, another parent of a child with AS and my co-author on The OASIS Guide to Asperger Syndrome, generously agreed to join me as co-owner of OASIS. Patty spends a great deal of time helping to answer forum posts as well as acting as a sounding board for questions and issues that arise in the course of running of OASIS. At this time OASIS has been visited over three and half million times and the current membership of the OASIS forums is well over 10,000 families. Thousands and thousands of e-mail pass through my e-mail box and quite often I find myself accepting phone calls at home -(much to the dismay of my family – but how can I not?) I don’t always know the answers, but I do my best to respond to each e-mail and phone call, provide resources and support, and, perhaps most importantly, let the sender or caller know -as long ago, Judy let me know- that they are not alone.

-Barb Kirby
[email protected]

You can also read this interview I did for The New York Times a few years ago.
Asperger’s Syndrome Q & A with Barbara Kirby
by John O’Neil, The New York Times

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The O.A.S.I.S. (Online Asperger Syndrome Information and Support) Web Page and all O.A.S.I.S. links from the main page and formatting of those links (http://www.udel.edu/bkirby/asperger/)are © by Barbara L. Kirby For permission to reprint, please contact [email protected]

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