Saturday, May 22, 2010

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.

* * *

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.

13 comments:

dmercer said...

That is so beautifully said. And it gives me hope that my son might find someone to share his life with after I'm gone.

Nicole said...

I love the paragraph about being married to a geek! I have been for almost 17 years and let me tell you, it's a rough road! You have to be a fairly independent and self sufficent kind of gal, you have to learn to ask for that cup of tea...don't assume he is going to get you one because he is making himself one...it's an adjustment, but worth it. I love my big aspie...he is a good guy.

EquiisSavant said...

Great reporting.

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.

~Equiis

John Elder Robison said...

Equis, I am not sure if I agree with that thought about speech and language. Evidence I've seen suggests that some autistic people have fully formed thoughts in their minds, but speech challenges make it hard to articulate those thoughts.

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 . .

John Elder Robison said...

Of course, you may well be right . . . other creatures communicate effectively without the use of words and it's possible we autistics can too. But if that's true, why don't some of us seem to know how?

Velvet Over Steel said...

Great post and blog! My son listened your book on cd in high school. He has come so very far and I know if other people believed and accepted him the way I do.... he will have life you talk about. He doesn't think he will find someone for him; but I believe he will! :-) Never give up on any Aspie! They are all well worth the time and effort to get to know, understand and Love!! Many, many HUGS to you, John!!!! ~ Coreen

KWombles said...

I especially like your last paragraph. My husband and I are both very geeky/nerdy and all three of our children are on the spectrum. When you look at the various issues and sensitivities of each of us in the extended family, as well as the ways in which family members think and behave, it's easy to see that almost the entire family tree is on the broad autism phenotype.

Br1207yantScipio1 said...

動不一定每一次都成功,但坐而不行,絕無任何成功可言.............................................

KB said...

John, how touching your post is and how lovely to meet you again there and get you involved with innovative technologies for autism at autism speaks. You were a great voice at the conference and helped some of the researchers understand their own work better. I have lived 'geek' with my physicist father and it's what I know. Now I have a son who shares these introverted characteristics but they are both the sweetest, most caring and yes interesting people. Wouldn't want them any other way! I look forward to getting more of your input on my work in robotics and developing social and communication skills in autism

jess said...

"Everyone I see here is absolutely united in pursuit of this one goal: helping people with autism live better lives"

WOOF

Autism Reality NB said...

Finding cures for the autism(s) would help persons with autism disorders live better lives.

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.

KB said...

Just want to share some of my pictures from the imfar tech Demo 2010. Happy viewing ! http://share.shutterfly.com/share/received/welcome.sfly?fid=547867767f3e3372&sid=0BatGrluxZMmHD

newnoz said...

Yeah but what do you do if your not a guy?? Hope one of those women are looking for a 58 year old to adopt??