Better than reality?

A couple of weeks ago I was catching up reading posts on a list that I am on (which has nothing to do with autism). While doing so, I followed a link to an article about the virtual world, Second Life.

This article intrigued me, for a number of different reasons. Buddy Boy, over the last 4-6 months, has gotten interested in playing computer games. For now this has been limited mostly to a "Monster's Inc." game where you basically roam around, gather energy, and smash things, or a couple of "Game Boy" games that we have gotten for him. Occasionally he'll branch out into other online games, but the Monster's Inc. and Game Boy have gotten the bulk of his attention. As his interest and time has expanded we have found it necessary to limit his time on the computer somewhat, otherwise he would gladly spend upwards of 8 hours playing on the computer.

Another reason that I was intrigued by this is that the small amount of research I am involved in involves validating simulations as testing tools in medicine. Most of our simulations utilize computer controlled mannequins, but there are other research groups that are starting to explore simulations in virtual worlds. I have worked with simulations for more than 10 years, and I have seen people learn things during simulation that they then carry over into the real one.

Finally, the thing that got me hooked and following other links to read more about Second Life was a reference to an "island" created in Second Life solely devoted to Aspies and their caregivers.

But back to basics. "What's a virtual world?" you ask. At it's most basic level, it's a bunch of servers hosted by a company called Linden Labs. It's not really a game, as there are no points to be gained, or declared winners. Second Life has an introduction on its web site that says the following:

Welcome to Second Life. We are a global community working together to build a new online space for
creativity, collaboration, commerce, and entertainment. We strive to
bridge cultures and
welcome diversity. We believe in
free expression, compassion and
tolerance as the foundation for community in this new world.

Sounds good so far. One can join for free, but if you want to "own land" in Second Life, or start a business there, then you need to pay a fee (upfront costs as well as monthly maintenance). People make money there (commerce is carried on using "Linden dollars", which can be exchanged with U.S. dollars. As this article reports, companies such as IBM have a presence there, and some universities are teaching classes there.

John Lester, a researcher at Harvard University, has started a private island in Second Life called Brigadoon. This island is a place for those with Asperger's syndrome and their caregivers. My impression is that Lester is using this as part of a research project.

Basically I have mixed feelings about Second Life (and granted, I have not signed up and visited there-like I need another thing to take up my time). On the one hand, I can easily see any kid getting so involved in a virtual world that they ignore their responsibilities in the real one. On the other hand, having seen how skills learned during simulations can carry over into the rest of a person's life, I can see where a person might pick up socialization skills in a virtual world that could carry over. On the third hand, I'm sure that for people that are much more comfortable communicating via computer rather than f2f (face to face) it can be nice to have some online friends that share your outlook and interests when you might not find that locally.

So I'm soliciting opinions from others as to what they think about virtual worlds. Let me know what you think.

How much to reveal?

The question often comes up regarding what do you say about your child’s autism. To others, the child himself (I am going to use himself instead of him/herself, as my child with autism is a boy), and siblings.

My short answer is that it depends, and do what feels right.

We have the advantage in our family of not only being the parent of a son with autism, but also of being parents thru adoption. So we’ve struggled with a somewhat similar question before.

The question of what to say, to whom, and when, seems to figure prominently in discussions of autism. Kristina Chew originally named her blog “My Son Has Autism”. And MOM-NOS recently gave a great description of what many of us go thru when deciding how much information to impart when our kids are going to someone else's house. And it seems that not a week goes by that I don’t see posts from people wondering how much information to relate to people in various other situations.

Well, for better or for worse, here’s how we approach it.

For our kids, it’s easy. Like adoption, talk about autism is natural. We don’t want our kids to feel that there is anything dirty or shameful about being autistic (or being adopted, for that matter). So our natural conversation contains many references to autism, school services, social skills class, etc. Our kids will be well versed in all aspects of IEP’s, FAPE, LRE, ESY, ABA, etc. In fact they will be so well versed they’ll probably be able to serve as advocates by the time they graduate grammar school. We talk about how all people have something that makes them different, and autism is one way of being different. We also point out how being autistic can give you certain advantages in life. This can sometimes lead to interesting playground exchanges:

“I’m autistic.”
“I’m artistic, too.”
“No, I’m AWWtistic. Not artistic. My brain is different.”
“Uh, OK. See you.”

While the kids still don’t understand that they don’t necessarily have to instantly share all aspects of themselves and their family life when meeting someone new on the playground, I’d rather have that then have them think that there is something “wrong” with them.

Now when it comes to talking to others about autism and how it affects your family, then I’d be inclined to recommend letting your gut guide you.

For acquaintances and schoolmates, it seems that it’s situational. Sometimes we just say that Buddy Boy has some difficulties with social situations. Sometimes we say that he has autism and sometimes this leads to him having problems with certain situations. Sometimes (like a big picnic in a park where we run into people we are acquainted with) we don’t say anything and just wait to see how things play out. My gut tells me that I’d rather have someone get to know Buddy Boy somewhat before telling them he has autism, rather than have to overcome any preconceived notions about autism they may have.

When it comes to work, I’ve never been one to go on and on about my home life with anyone within earshot. Many people are more social than me. You have to find what’s comfortable. I do have some close friends at work that I talk to, and to those people I talk about our family life, including the fact that our son has autism. I try to let them know the good stuff as well as the not so good stuff, so they don’t get a skewed view.

In public, if we’re causing a scene (which thankfully doesn’t happen all that often anymore) it’s sometimes necessary to do just as the good Dr. Chew does, and simply start out with “My son has autism, and …”. At other times a simple “Sorry, we’re just having a little difficulty today” does the trick. I think that personally I sometimes am hypersensitive to what I think others are perceiving. If you look at NT kids in public, a lot of them are exhibiting “behaviors” at any given time. So I’ve been trying to relax more and just go with the flow if we’re really not bothering anyone else. It’s really none of their business.

So that’s it. Honesty and forthrightness in the house, and using our gut instinct and common sense outside.

So what do you do?


Joe is 209 :( too much chocolate!