Tuesday, April 15, 2014

Autism Talk at The Warren Center

On Saturday, my wife and I gave a talk at The Warren Center in Richardson, TX on our family's journey with autism. My son, Daniel, was diagnosed with autism almost a year and a half ago, and in my research on autism, I discovered that I have Asperger's. I am equally convinced that my maternal grandfather had Asperger's as well. Thus, autism seems to run in my family.

The audience at The Warren Center was mostly Spanish-speaking Hispanics, so my wife, who is Hispanic, spoke to the group in Spanish. That meant we few English-speakers needed translators. She told our story, relating a few anecdotes about me and my behaviors that now made sense in light of us understanding I have Asperger's (like my failing to greet people when I am introduced to them). But the audience, after a while, started asking me questions -- they were hungry to learn what's it's like to have autism "from the inside."

All of these people had autistic children, many too young to really tell them what it feels like.

Many of the questions expose a lot of misunderstandings about things we commonly hear about people with autism. For example, the issue with eye contact. It's not that we cannot make eye contact -- more, we can in fact learn to make eye contact -- but that when we do make eye contact, it makes us deeply uncomfortable. So we prefer to not make or maintain eye contact.

Similarly, there is a misunderstanding about our social anxiety. Yes, we will tend to try to avoid social situations as much as possible -- but that does not mean that we don't ever want to be with people or doing things with people we like. I was president of the Association of Undergraduate Geneticists because I was immensely interested in molecular biology. I will go to meetings if they are required for me to accomplish other things I want to accomplish; I do not go to meetings because I like meetings, though.

Engaging in small talk causes me social anxiety, but talking about a subject in which I am interested does not. Of course, in the latter case, I am so focused on the topic that I in a real sense forget that I am surrounded by people. And that was the case at The Warren Center. There was a question about my ability to stand in front of a bunch of people and talk; I pointed out that so long as I was interested in the topic (as I was interested in talking about autism), it didn't matter that there were a large number of people there in front of me. I could forget they were there because I was focused on the topic at hand. So speaking in front of people is in fact pretty easy for me. I do better speaking to an audience than I do being a part of the crowd.

One of the benefits of learning I am autistic is that my life now makes sense; one of the benefits of learning very late in life that I am autistic is that I could not use my autism as a crutch to avoid making changes. People were willing to point out this or that behavior, and I was willing to try to make the changes to the extent I could. This has allowed me to make a great many social adjustments I may not have made otherwise. It has not always been easy, but it has often been possible -- at least to a certain degree.

I think it would benefit a great many people to hear about what it's like to be autistic "from the inside." Because of my experiences, because of what I have learned about autism, because I learned late in life I am autistic, I had the distinct advantage of knowing both what autism looks like from the inside and the outside. I think people need to understand the disconnect between those two things. To audiences interested in learning about autism, I would argue that that is my value added.

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