Asperger Community?

© A.J. Mahari August 31, 2005

An Open Call to all who have Asperger's Syndrome or are in any form of relationship with someone with Aspergerís Syndrome (AS) of all ages.

In recent years we have witnessed an incredible increase in what is known as the Aspergerís Syndrome "online communityĒ.

I have concerns about many things to do with Aspergerís Syndrome and what it means to each individual who has it.

As well as what it means in the lives of those who love someone with Aspergerís. Whether that someone is a child, a friend, a family member, a partner/spouse, girl/boyfriend, or a co-worker, Aspergerís Syndrome needs to be better understood and cared about by all.

My main concerns revolve around the many often divisive aspects of the ďAspergerís CommunityĒ. Many web sites and lists focus on the experience of AS in kids today, and primarily from a parentís perspective.

Many websites focus on AS from a childís perspective and are aimed at parents.

More and more like this website: ASPERGER ADULTS are focusing on AS and adults. All are needed and valid.

The thing that seems to me to be lacking and that I donít understand is the separation between the online (and no doubt real life) AS communities of those with AS as a adults and those who have children with AS.

The reason I am puzzled is simply that for every parent that has a child today with AS and focuses only on that child and services that may be available to that child not caring or helping adults with AS (who for the most part canít get any professional Ė organized services dedicated to them and their needs) the very place their son or daughter will end up at the age of majority is not being made better for his/her arrival there. For those who are adults with AS and/or who were diagnosed as adults with AS there is this cavernous abyss.

Donít parents of children with AS now care that their kids are going to fall into this abyss with the rest of us at the age of majority?

If you are a parent reading this and you do care it would benefit all of us if we could begin to dialogue about this.

I think much could be gained, shared, and learned from each group that would benefit all. It might also mean that together the parents of children with AS community and the AS adult community could forge some common ground and begin to raise the visibility of Aspergers in ways that would help everyone associated with it.

I continue to wonder why those of us who are adults with AS canít and donít get more support from all the parents of AS kids out there. We could really possibly help each other out.

I realize that for some parents with children who have Aspergerís Syndrome there are those who believe or hope that certain interventions and strategies will yield the kind of results that would mean their children can unstep or outgrow or unlearn their AS/autistic tendencies. Most of us who are adults with AS (whether there was intervention in our childhoods or not) do not believe that this actually is the way to go, that it works, or that it is the best thing to do with anyone with Aspergerís. It is, in my opinion, great to teach skills and to support your childís being able to connect with others and get the most out of taking part in the Neuro-Typical world as he/she is able to or wants to.

That said, though, I do not believe that Aspergerís can be taught or re-conditioned out of anyone. I donít even believe that it should be if it was possible. What is more important is supporting who we are as we are. We have a right to be who we are as we are and to value and pursue what fits for us in our own differences.

Working to find ways for each segment of the online AS Community to interact makes a lot of practical sense to me. Canít we learn from each other?

It has to be a two-way street however. On many lists on the net, all-too-often, where parents are understandably concerned about their child/children with AS the focus seems to invariably shine brightly on all the parents seek to know, learn, and understand for their kids and it essentially really further marginalizes adults with Aspergerís. This marginalization is the very thing that will happen to the AS kids of today, when they reach adulthood if changes arenít made to our current and long-standing plight.

Not all about the plight of AS adults is negative or to be dreaded at all. But donít adults with Aspergerís deserve support and services and advocacy too? By the very nature of what it means to be an adult with AS, many cannot effectively advocate for themselves or connect and organize in ways that would advocate for the greatest number of us.

However, non-existent support and/or professional services, turf wars between Developmental Disorder Agencies and Mental Health Agencies - inter-organizational ping-pong, is NOT helping anyone really.

If you disagree with what I've asserted here please email me (at the address below) and let me know why.

If you agree and/or are interested in talking more about this and what could be done, first online, and secondly, branching out to real life local community efforts please email me, with Asperger Community in the subject line at:

© Ms. A.J. Mahari 2005

Asperger Articles Main Page

as of September 26, 2005

Last up-dated September 3, 2006