Wednesday, June 6, 2007

Meeting of the Minds

Today I drove up to El Pueblo de Nuestra Senora La Reina de Los Angeles de Porciuncula (Los Angeles, for short. Or, most commonly known as L.A.). I am on the Board of Directors of an industry association, and today was our quarterly board meeting. In it, we discussed (among many things) whether we are delivering to our industry members what they expect based on their annual assessment (money). As my colleagues droned on about such fascinating topics as finance reports (yawn) and tax strategies (snore), my eyes glazed over and I began to think on other things. I began to realize that this voluntary trade association was in some ways analogous to ... the Autism Hub. And since the discussion centered on "How are we directly benefitting those who look to us for benefits", be it active members, associate members, or people with shared interests, I began a checklist in my mind of why, as a consumer, the Autism Hub is so valuable to me. And here, for your perusal, it is:

  • Sense of Community: As the parent of an autistic child, I place great value on the exchange of information with other parents. The only thing that is of even more value is the input of autistic adults. For those who have not walked in my shoes, it would be impossible to explain the sense of relief imparted when I had my first lengthy online dialogue with an autistic adult. This was the first time I had first-hand experience with someone who had faced similar challenges to my own son and had grown up to become a thriving adult. For those of us who are active in the autism community, it is so easy to forget that, for many parents, the first time they have ever given autism more than 5 seconds of thought is the day of their child's diagnosis. And, more importantly, parents are not told about the "upside" of autism by professionals and many first-response support groups. Doing a Google search to find info about how to approach this as a parent, and landing softly among a group of impressive autistic bloggers and accepting parents, is about the best thing that can happen to such a parent.

  • Depth of Understanding: As an NT person, autism and autistic people can be challenging for me to understand. Anyone reading this, regardless of neurological makeup, is only able to take meaning from it within their own frames of reference. But in dealing with any number of autistic persons, and communicating with them in a casual format that allows ideas to originate from diverse sources, I have gained great appreciation for the depth and breadth of thought expressed by both my NT and ND friends in the community. Not only have I been placed in a better position to shed myths and misconceptions so well engrained in the popular literature about autism, but I have also been able to deftly avoid the "parent traps" such as Poor-me Syndrome and Cure-at-all-cost Syndrome due to the information I have been exposed to by the Hub bloggers.

  • Leads on Other Sources of Information: It is not at all uncommon for Hub bloggers to present info from outside sources. So instead of being a closed community, the Hub is just a jump-point for a huge range of information (most, but not all, of which is topic-specific) on the web.

  • How to be an Ally: A common and valuable tpoic of dicussion on the Hub is: How can non-autistics be of benefit to autistics and autism advocacy? This issue waxes and wanes in popularity as a topic, but permeates much of the language and tone of most discussions.

  • Darn Good Reading: I have rarely seen a more diverse or intelligent group of people gathered in one spot. As literacy is the tool we have at our disposal to communicate via the internet, it is not surprising that the level at which it is applied exceeds what one would find in other environments. Humor, controversy, hard science, philosophy, emotional discourse, ethics. It can all be found here, discussed intelligently. Take, for example, Bev's post today about Robots. It's a classic. From so many standpoints. Where else can I go for this type of post, which combines humor, education, and a personal reference for me (a man whose son is repeatedly talking like a robot. "I ... want ... milk.") Answer: Nowhere else.

  • Ability to Contribute: In my daily life, my wife and I have a full plate. We raise two young sons and recently enjoyed the arrival of a third son - now 5 months old. We have a good-sized property to take care of. I own and operate a small business that is very demanding. Lots going on. In light of these factors, it is not possible for us to be "joiners" in terms of grassroots community involvement. So, this forum provides an conduit for contribution. However small, I feel that adding my voice to this community can and will make a difference somehwere along the line in the life of my son and other autistic kids growing up today.

  • Decentralized Organization: One thing that has made many western societies great is the free, virtually unfettered exchange of ideas. The Hub directly carries on this tradition. No one tells me what to post. Anyone is free to chide me or encourage me for my writings. I am free to offer opinions to any Hub blogger, and will typically receive a response. Many people who do not blog on their own read the Hub regularly. It is an open-exchange environment. No moderation. No rules. Just a mission statement which places acceptance of autism in the proverbial Pole Position.

So, there you have it. Some of my reasons for continuing my consumption of, and contribution to, the Autism Hub. See you there!

2 comments:

Suzanne said...

Well-said! I agree. The Hub is important to me. The reason I want to comment is RE the robot-talk.
"I ... want ... milk." I'd be happy to hear my boy say that much... he signed "yes"(for the first time) yesterday, and i probably freaked him out with my hooting and cavorting...
but, knowing that PECS is a precursor to a dynavox (or such like), When he "pushes the buttons" by pointing to the cards on his sentence strip, sometimes I feel like a robot talking. "I want ... milk"
I can live with that:)

Phil Schwarz said...

Steve, I agree too.
As an AS parent of an autistic son and a daughter in the broader phenotype, and as the AS spouse of a patient, loving nonautistic woman, I am multiply invested in this community, and the Hub in all its diversity is tremendously valuable to me.

I think that the nonautistic parents, family members, and friends who support autistic self-advocacy can learn how to be effective allies without "taking over". The gay community and the African-American community, among others, have similar demographics: more potential allies from outside their own population than there are members of their own population. And yet the ally populations of those groups and others learn how to be effective allies without getting in the way. I think our community can do the same, if it will give itself credit for the ability to do so.