Saturday, February 28, 2009

Images from the Greenhouse



I have moved my earlier story about Asperger's and black people to my Psychology Today blog to make way for some mid-winter imagery


Every winter, the folks at Smith College's greenhouse put on a show. I like to go over before they open so I can shoot pictures without the distraction of impatient oldsters jabbing me with canes and hungy or bored children eating the plants.

This afternoon, I walked through and shot these images.


I can work the camera, but when it comes to plants . . . I have no idea. Actually, that's not true . . . I can grow them, but I can't tell you what they are by name. My flower-naming skills don't go much beyond dandelion, marigold, tulip, and rose. And none of those fine plants are pictured here.

These are all natural light images. I used the HDR processor in Photoshop to bring out the range of color you see, but nothing is added. The colors are all real.















































The myth of the black Aspergian

When I began learning about Asperger’s and autism, one of the first things I read was that its incidence was virtually the same across all races. It was more common in males, but was otherwise evenly distributed throughout the world.

It was with that conventional wisdom in mind that I embarked upon my new career speaking to readers and other groups on life with Asperger’s. I began in the summer of 2007. Since then, I’ve made over 100 public appearances and spoken to some thousands of people who have a personal stake in Asperger’s or autism. One interesting point stands out.

The number of black Aspergians I’ve met can be counted on one or possibly two hands. Why might that be?

I have met many Asian Aspergians. When I went West, I met Mexican Aspergians. In some communities in the East, I meet Aspergians from Puerto Rico. In many cities I see Russian Aspergians, and indeed I see Aspergians from all the European countries. The fact that I have met so many Aspergians from America’s other “minority populations” suggests something is up.

If black and Hispanic people are the largest minority populations in America, why don’t I meet them in similar numbers? Hispanic Aspergians are common at my city events. Black Aspergians are nowhere to be seen.

Perhaps they are shy, you say. Maybe they visit me online. Maybe that’s true. I have no way to know the ethnicity of blog visitors. I will offer this tidbit: Look Me in the Eye is sold in over 20 countries, and in the last 30 days my blog saw traffic from 88 countries. That suggests Asperger's does indeed reach across many races, countries and cultures.

I have considered several possible explanations for the absence of black Aspergians at my events.

It’s been suggested that the population is smaller - fewer black kids are diagnosed with Asperger’s because they receive a lower level of care than other kids. But if you believe that, how do you explain the Hispanic and immigrant kids I meet with Asperger’s? Do you believe their schools and care are better?

It's been suggested that they are poor, which is another marginally insulting explanation that I don't buy. I meet plenty of poor white Aspergians. They come to events even though they don't have money to buy books. Why should they be different?

It’s been suggested that most books are read by white females, and my audience at events is simply a reflection of this demographic reality. That readership statement is borne out by much market research, and I can accept it. It may explain the makeup of the largest portion of my audience at events. But it does not explain why I see members of the other groups (Hispanic, Asian, etc) in greater numbers than black people.

I confronted this question last fall, when I spoke at the annual convention of the Asperger Association of New England. There were 750 people in the crowd that day, and one black female said, “Where are the black guys with Asperger’s?” They certainly were not in that room. We had affluent Aspergians, and poor Aspergians. We had tekkies and animalists. We had all sorts of people. What we didn’t have in that group were black Aspergians.

Some people have suggested racism holds the key. Maybe black Aspergians don’t feel welcome in groups like the AANE, they say. Anything is possible, I guess, but when I think of racism in the context of my own life, one thing stands out: Part of my obliviousness to non verbal cues includes obliviousness to the race or appearance of any other person. If my own life is any guide, we Aspergians may be largely oblivious to the triggers for racism in neurotypicals. So my own life experience makes me doubt that explanation.

I’ve now got some questions of my own about this:

Could there be something different about black American culture that somehow better integrates Asperger’s into the general population, thereby rendering them invisible? I think Asian cultures integrate Aspergian behaviors into society at large, but Asian Aspergians remain visible. Do black Aspergians have a secret the rest of us might want to know?

Is there some (genetic) difference in black people that makes them less susceptible to Asperger’s? If so, what is it?

We have culture and genetics. What else is there?

Sunday, February 22, 2009

The Dog Dinner

The Dog Dinner, with thanks to Jess Wilson and for Michelle O'Neill and Riley.




Last night it finally happened.

Back in December, Jess Wilson asked if I’d donate a signed book for a contest she was running to raise money for a dog. I’m always a sucker for a good dog story, so I agreed.

In fact, I’ve been around good dog stories most all my life. My first dog stories involved beagles, because they were all around my grandparents down in Georgia. When I was just a kid, we had log trucks passing the house, and the beagles would come out from under the porch and chase the trucks. As you can imagine, every now and then, they’d catch one, and with all the weight of those logs, the result was a pretty two-dimensional beagle. But we were nothing if not resourceful, and we dried them on the clothesline and staged contests to see who could wing a saildog the farthest.
We had a pretty good thing going till the Wham-O people came along with the Frisbee.

But that’s another story. Last month’s story was about autism and service dogs – an improbable but seemingly legitimate combination. Michelle ONeill, another blog friend from Cleveland, was raising money to get one of these dogs for her kid, Riley.

The trouble was, fancy dogs are expensive.

Jess started by taking bids for the book. It brought in a few bucks, but she got a better idea – raffling a night out with me. Yeah – I know what you’re thinking – Who in her right mind would pay for that?? But there’s a sucker born every minute, I guess, because it worked. And it didn’t end there. Jess somehow enticed a dozen females from all over the country to come out here for Wives Gone Wild with me tagging along.

We had Pixie Mama, Michelle; Jenn , Judith; Rhemashope , Tanya; Kyra , Kim; Petra and even Mama Mara. And that wasn’t all – but I pasted the list from Jess’s blog so if you want to find the others, look there.
Moms came from all over the country. One even brought edible cow pies. The amazing thing was, most had never met in person until last night. I wrote a story on the power of the Internet and moms; this event demonstrated that for sure.
http://jerobison.blogspot.com/2009/01/supermoms-and-mom-empowerment.html


And the mosr remarkable part was that they shook a dog out of it. Michelle drove all the way up from Ohio to participate. Here she is:




The action heated up as the night wore on. In this next shot you can see that Kyra has found something tasty in Jess’s ear.



Moments later, the leg wrestling championship began.



Drama Mama – who was supposed to appear in person – called just as the grease started to fly.

Three moms watch, moments before the table was upended into their laps.



You’d have thought the restaurant would’ve kicked us all out right then, but times are hard. When they finally gave us the boot at 1AM we trooped back to Jess’s place, where the moms changed into pajamas, opened specially purchased Wine Coolers, and got ready to start Round Two.

I left while I still could. I distracted them with photos and slipped out into the cool night air. I will leave the rest of the storytelling to them.

All I can say is, you should’ve seen it. I wish I had taken more pictures. I'll bet I could've sold some of them back for some real money.

Friday, February 13, 2009

My talk at the First Year Experience conference is online

You can watch it here. It's twelve minutes, in two parts.

http://www.youtube.com/watch?v=goPlvfqHQfU part one

http://www.youtube.com/watch?v=R77t7up4ths part two

If you want to see the other Random House authors go to YouTube and search on RHLIBRARY. You'll find a few of my talks and some other authors including Donovan Campbell, Tracy Kidder, and others

Tuesday, February 10, 2009

Speaking at colleges

It’s another freezing February morning here in New England. I’m back from the First Year Experience conference in Orlando. I’d like to thank everyone who stopped by for your enthusiasm and interest. As some of you found out, we actually ran out of copies, first at the booth and then at the lunch!

If your school is considering my book for a common reading program or for use in psychology, education, or other curriculum, I encourage you to contact Mike Gentile at Random House Academic Marketing to see what they can offer you. My publisher has a number of programs to help schools use the book, including special pricing, teaching guides, and support materials.

He’s at mgentile@randomhouse.com

A number of conference attendees asked if I was available to speak at their schools. My speaking engagements are booked by Sally Itterly at The Lavin Agency. She is filling spots for summer and fall 2009, and 2010. She’s at sitterly@thelavinagency.com

These are some of the things I can do at your school:

I speak to large assemblies. Sometimes people ask how a guy with Asperger’s can speak to big groups. They say, don’t you get nervous? I don’t know about other Aspergians, but I am essentially oblivious to crowd size. And I know the audience is there voluntarily, so they’re probably kindly disposed toward me. And finally, I know I’m bigger than 99% of college students if it comes to that.

Even though I do large groups, what I really like are smaller sessions. I really enjoy talking with students and faculty in smaller groups. For example, I speak with students in psychology or education, and I’ve done sessions with Asperger students. I’m prepared to speak on the impact of neurological differences and Asperger’s in most any department of the school.

I also do sessions with faculty and staff. Often I combine several of those sessions into one full day or even a two-day event. For example, I can speak to a freshman assembly and then follow up with several smaller group sessions.

I try and entertain audiences, while still managing to deliver some important messages. I want teachers to know that kids with neurological differences often have hidden gifts that they may not be aware of. I want students on the spectrum to know that life gets better for us as we get older and learn to adapt and fit in. Finally, I want all students to walk away with a better understanding of the great diversity in the human population.

Thursday, February 5, 2009

Part 2 - The danger of diagnosis

In my last post I talked about the value of self knowledge in the context of neuro-psychological testing.

I said, “There is no downside to testing.” Several readers took me to task for that, pointing out that there can be a downside . . . learning that you are officially “different” can be a crushing blow to the psyche.

I have thought about that point quite a bit. Frankly, although I acknowledge what people are saying, it does not make a lot of sense to me. Why would increased self knowledge be such a blow? ADD, Asperger’s or autism are neurological differences. They are (generally) stable conditions, not diseases that progress. If you learn you are on the spectrum, it’s not a death sentence. You’re not going to become senile or lose your wits.

So why is the knowledge of why you are different so hard to take?

I think we grow up with certain notions of what conditions like “autistic” mean. We think, I’m glad that doesn’t apply to me. Then, all of a sudden, we are told it does apply. Our self image takes a hit.

I can understand that, but I still believe that knowledge is power. We can’t change our lives for the better unless we understand what needs changing. Therefore, it is necessary to get beyond the shock of a diagnosis and move into understanding what it means, in terms of how we act, live and get along.

To me, critical comments like Samwick’s (on my main blog) illustrate the danger of labels, which is rather a different issue that what I originally meant to write about.

When I wrote my original post, I thought how much diagnosis meant to me by helping me understand exactly how my mind differed from other minds around me. For example, the simple insight that I miss nonverbal cues was life-changing. I seized upon the specific behavioral issues and set about constructing a better life. It worked. Words cannot express how much better my life is, thanks to the self-knowledge I’ve gained since learning about my Asperger’s.

For some other people, it does not work that way because they become sidetracked by preconceived notions about “having a diagnosis.” Instead of looking at their own specific issues, they look at broad statistics associated with the diagnosis. They see phrases like, 32% can’t live independently, or 66% never get married and have a family. They become trapped in generalities rather than focusing on specific issues to make their own lives better. They interpret those general statistics as a prediction for their own future, when it’s nothing of the sort.

More specifically, they see their future as inexorably tied to every unfavorable broad statistics associated with their diagnosis. IN that sense, some DO see an autism diagnosis as a sentence to some kind of living death. They get swallowed up by diagnosis, forgetting the fact that they’ve lived their lives before and life goes on after.
That is the danger of a label. Some people read what’s associated with a label, and make it self-fulfilling. They let go and become the label. That negative outcome can be reinforced by teachers and adults who say or think, He has a diagnosis of autism. We can’t expect too much of him. That is most assuredly not the way I have lived my life.

For knowledge to have power in this context, it must be you-specific knowledge. You should not care what 66% of people do in this context. You should care that you have specific and identified strengths and weaknesses. For example, testing might show that you can read subtle emotion in voices, but you can’t pick signals up from faces alone. That’s an example of knowledge you can act on to make your life better. The fact is, you ARE that way. It’s not new, and you’re not getting worse. You are already living your life in context. Understanding can only help.

Next, I’d like to address another important point . . . the risk of a wrong diagnosis. People say, What if I get an Asperger diagnosis when I really have ADD? Can’t that be harmful?

That actually goes back to my comments on the dangers of labels. To me, the label does not matter. What matters are the specific insights into your own behaviors and identification of your personal strengths and weaknesses. There is no hazard to learning those things. I agree that diagnostic errors can be harmful, but that too is another subject.

Don’t focus on the label. Focus on the behavioral insights. Ask yourself, does the result make sense? If it does, you are the way to improvement. If it doesn’t make sense, question the tester. Perhaps the results don’t mean what he thought. In the end, it is the specific behavioral insights that allow you to make a better life, not a broad brush label.

People are not labels. Our personalities are made of countless eccentricities and aberrations, and it’s those I seek to understand. The power is in the details. There is no power in a broad brush label.

Finally, there is another danger of diagnosis. That is with your medical record. What if you receive an autism diagnosis and it’s entered into your “official” record because you had the testing done by a professional who’s paid by a health insurer? It’s possible that you could be rated unfavorably for insurance, or even denied insurance later in life.

What to do about that? The only answer I know is to pay for testing on your own, and make your own decision where the results are released. I would have some concerns about having any diagnostic information in my medical record because the evidence indicates insurers sometimes try and use those records against us for their own advantage.

So the issue of “downsides to the diagnosis” is not as clear-cut as I originally portrayed. I apologize to those who felt my original post was misleading or incomplete.

Wednesday, February 4, 2009

The First Year Experience

On Saturday morning, I’ll be flying to Orlando to attend the First Year Experience conference on behalf of my publisher, Random House. I’ll be signing books at the Random House booth on Saturday, and I’ll be speaking at the Random House lunch on Monday. Stop by the booth if you’d like to meet me or learn more about my writing and advocacy work.

Here’s a link to the conference site:
http://www.sc.edu/fye/events/annual/index.html

Here’s a link to the Random House First Year catalog
http://www.randomhouse.com/acmart/images/PDF/RH-FYE-Cat-09.pdf

I hope to see you there this weekend.