A World of Geeks - IMFAR 2010
Wrong Planet founder Alex Plank and my son on the set where they are making video of conference participants, yesterday afternoon.
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I have observed a lot of scientists at this IMFAR event. Different as they seem on the surface (different sizes, shapes, colors, emission of sounds and smells . . .) they all have this in common: Everyone here wants to find ways to help fix autistic disability. That said, “Fix” means different things to different people, depending upon their special interests.
Some want to find new ways to teach little kids to interact more successfully. Others try to understand why a tiny difference in our genetic code might take away the power of speech. Psychologists test new ideas at Asperger summer camps, while roboticists use animated creatures to teach kids social cooperation. Others look for the reasons some of us have such terrible trouble with our innards and digestion. And I can’t forget the public health people, who ask why different ethnic groups have different rates of autism diagnosis, and who reshape our screening tools to work across different cultures.
I have listened to countless presentations about all those topics and more these past few days, and many people have sought me out to tell me about their projects one on one.
Everyone I see here is absolutely united in pursuit of this one goal: helping people with autism live better lives. Each one has their own unique approach, but the underlying drive is unmistakably the same.
And it’s not just the scientists who are driven in this way. There are people here who bring the same drive to fundraising to support the scientists, or to public relations to tell the world what’s going on.
You or I may disagree with some of the science, or how the PR people present it, but after talking to all these folks there is no question in my mind that their hearts are in the right place.
That summary pretty much describes all these folks on a professional level. These are not nine to five workers. There lives do indeed revolve around the unraveling of their individual bit of the autism puzzle. There is no talk of "cure" here. Instead, there is talk of Autisms, with an "s" at the end, and a recognition that the more we know, the more complex the issues become. There are some problems science will probably solve in the next few years but this isn't one of them. That said, we are making great strides toward reducing the impact of the most debilitating aspects of autism, and I expect the pace of progress to pick up. It's just we have so far to go . . .
What about the personal lives of the doctors, scientists, and other non-autistic denizens of this world? That is an interesting question . . . one I have looked into with some curiosity.
I think all the people in attendance here recognize the challenges autistic people face in one area or another of their lives. That’s what makes them want to help. At the same time, I see a tremendous appreciation of the unique gifts autistic people bring to the world. Indeed, these folks surround themselves with autistic people in their personal lives. At first I thought that might be accidental, but now I see it’s deliberate, even if it’s at the subconscious level.
Many are married to geeks, or have kids on the spectrum, or seek to marry a geek or geekette. I have seen that particular scenario play itself out time and again these past few evenings in the after hours get-togethers.
In closing, I will offer you this essential truth derived from my careful observation of my own Cubby, Alex Plank, and other young spectrumites in attendance here:
If you are a female entering this world, be forewarned that it is a one-way trip. For once you Go Geek, there is no turning back. It only takes one date with an eccentric scientist or engineer – after that, an ordinary banker or business person will never do . . .
After all, what kind of girl would choose a common movie for a first date, when presented alternatives like flying a remote control helicopter or visiting a Server Farm in Maryland? I was reminded of the time a few years ago when I asked my friend Celeste what she saw in her Geek husband. "He's just the most interesting person I ever met," was what she said, without a single second of hesitation.
That is the essential reason that autism has been evolved and been with humanity forever. Even though many don’t know it, and some never find social success, Geeks are essentially endearing and appealing. We certainly have our problems and our challenges, but at the same time there is an innocence; a sweetness and an appeal that ensures a certain part of the population will always be there for us at many levels. I saw that most clearly in the people I’ve seen here.
Regarding this: "Others try to understand why a tiny difference in our genetic code might take away the power of speech," I don't think Autism "takes away the power of speech" but rather we are neurologically bi-lingual in Autistic neural-language and no one has taught us social-English as a second language yet.
However, it looks like some autistic people do not have the ability to form language at all, even within the mind, which is the basis for my phrase . .
That is the reason people seek to find cures for disorders.
It is time to look at cure as part of the spectrum(s), the treatment spectrum, the helping people with autism disorders live better lives spectrum etc.