The story behind Aspergia
It’s been over five years since I created Aspergia.com
In
June 2002 a Google search for the word "Aspergia"
resulted in 27 results, of which four were in English (all four
typographical errors).
In
June of 2005 the same search yielded some 13,000 results, the
vast majority of which used the word Aspergia in direct connection
with Asperger's Syndrome. The term had taken hold.
Aspergia was written up in one fell swoop in a creative frenzy
that lasted an almost sleepless week – the week following my
own diagnosis. I edited a few of the texts afterwards, but mostly
I left it intact. Despite the imperfections and sometimes awkward
grammar, it reflects a certain rawness that I wanted to retain:
a deep sense of emancipation, and a mixture of emotions: relief,
anger, curiosity, a deep need to express, and any number of
other feelings of the moment… It captures perfectly a moment
in time that was defining for me. It allowed me to move on,
past the one last hurdle that was holding me back, and to me
Aspergia is like a time capsule, but one that has evolved, thanks
to other people, well beyond its original idea.
Despite the revolutionist, perhaps even missionary, tone of
Aspergia, I didn’t think through where the idea would go. During
the days and nights of its creation, typing away on the computer
keyboard in my study, overdosing on adrenaline and coffee, anger
and excitement, those feelings were strong drivers, as was my
creative drive and the need to offload. I think part of the
missionary tone came from a need to share with other people.
The need to interact with ‘people like me’ and be part of an
Aspergian force (hence the idea of the “Aspergian Passport”),
but once I created the site, I realised I had already captured
my thoughts and feelings. It was almost as though whenever people
interacted with the site, they were interacting with me at
the time that the site was written; with me, within that mood and in that moment. I used myth and imagery to make the
point a bit more primal. It was about abstract feelings and
my inmost questions.
I think my deepest frustration was when, following my diagnosis, I
looked for material in literature and online that would be relevant
to me and my personal circumstances – and finding none. I’ve
had what can only be described as a terribly difficult childhood
and early adulthood, with no support structures in what seemed like
an alien world. I didn’t understand how people behaved and why,
and being face-blind didn’t help.
But through my teens and twenties I found my path in the
world and achieved a great deal on any scale. I had a strong sense
of accomplishment at what I achieved against all odds. In a lot of
respects I only achieved so much because of my Asperger’s, and
now I was certainly not an inferior to these people who spoke of me
and my kind in their writings in such a condescending way.
And then I launched Aspergia, with a small online community, which
quickly developed into a much bigger one. Within a year I was
inundated with enquiries from the press, parents, academics, and
its resident community members. I was attacked by some enraged
academics who felt threatened by the rebellion of their subjects,
and by some of their subjects who liked the stereotypes or hated my
opinions. I had thousands of support (and hate) mails and even fan
mail, and parents writing for advice. The site was mentioned in
books and articles, and I had given permission for material to be
used for a theatre play and a musical.
I was pleased that it generated strong views and controversy,
but was in two minds as to what to do next. On the one hand
I was tempted to develop it further and create something bigger
on the back of the wave of interest. On the other I had moved
on, and wasn’t sure I wanted to be ‘typecast’ in that sort of
role. I was also busy doing other things, and, most importantly,
writing a novel..
In July 2004, I decided to close the community area on Aspergia,
which was generating too much work for me, and to leave the site be
as it was. In the following months other sites have emerged, using
Aspergia’s symbols and ethos, and creating forums for its
previous members and new members of their own. In a way the groups
that succeeded Aspergia have moved on and evolved in different
directions, each with their own personality.
I hope I have contributed, at least a little, to those who will
find themselves in the same boat… And many thanks to all those
messages of support, to the people who have taken part in the
debate (including the furious academics and
rage-fuelled-missive-senders), and to what came to be known as the
Aspergian communities.
Take care, and thank you for taking the time to visit Aspergia.com!
Edan
July 2005
© Edan and
Aspergia.com The content of this page is copyrighted and may not
be replicated in any form without prior written consent.
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