Why I’m starting a wiki for Aspies for my “produsage” product
For my first “produsage” assignment, I’m going to attempt to start up a wiki for folks to share what they use to help deal with the effects of suffering from an Executive Functioning Deficit. I am going to target folks in the Asperger’s community.
Defining some terms
Executive Functioning (EF) refers to the processes in our brains that help us figure out how to plan for and execute multiple tasks at the same time. Like, talking on the phone and writing something down at the same time. These functions also help us shift gears if there is a change in plans, and make it possible for us to decide quickly how to proceed.
According to this document from the Sacramento Asperger Syndrome Information and Support website, EF Deficits is one of the three main issues folks with Asperger’s have.
My horrible experience tonight
My family supports the Asperger’s Association of New England because of support they have helped to provide to my oldest child. She has Asperger’s Syndrome.
We were supposed to go to a screening tonight of a new movie about an Aspie guy. It was a screening done by the studio in Boston. We had to request tickets from AANE (which we did). We live in Metro West, so we drove into Boston. We had to be at the the theatre no later than 6:45.
Well, we got turned around while walking from where we parked the car to the theater. We finally got to the theater, but we were seven minutes late. No one from AANE could be found. The theater people would not let us in. They kept saying the movie was sold out. I kept saying, no we’re on a list. It didn’t matter. We weren’t getting in.
After being lost, walking around in the loud, loud city, now coming into a loud theater lobby and being told it was all for nothing – we weren’t going to see the movie….well my oldest lost it. Complete and total melt-down. Here is a description of what a melt-down is like for an adult with Asperger’s.
I was so mad at this lady for not really explaining what happened to our seats, and not letting us in. I was upset that she could stand there and watch my child – who has Asperger’s – melt down because we were seven minutes late to see a movie about a guy with Asperger’s. The lady tried to put her arm around my daughter to comfort her and was very taken aback when I told her DO NOT touch her.
They left us alone, we got calmed down enough to leave. I am still feeling horrible and wiped out from dealing with it all. If you are a parent of a child (or in my case an adult!) on the spectrum, you know what I mean.
How technology could have helped
What if we had been given the cell phone number of someone from AANE? What if we could have texted or called and told them we were lost, but we would be there before the time the doors were scheduled to shut (we did make it to the theater before that time).
What if AANE had a twitter account? We could have contacted someone that way as well.
My family is very dependent on technology. We use it to try and deal with some of the problems that come up from EF and sensory deficits. Why isn’t everyone using technology to make their lives easier?
My “produsage” project 1
This is where I got the idea for my project – other people HAVE to be using technology like we do to help with Aspie issues. What if they have come up with a better way to use technology than we have? What would happen if we all shared our ideas?
I created a wiki to satisfy the requirements of the first “produsage” project, but also to channel some of my frustration around problems resulting from an EF deficit that could be avoided if technology was properly used.
Please help me build out this wiki. I am sure people are being much more clever than I in using the Internet to help themselves, their families, and their loved ones. Go and add your suggestions, and share the link with others. Thanks!
Here is the link:
July 15th, 2009 at 11:39 am
Oh, Gina, that sounds like an unnecessarily exhausting and frustrating evening.
I hope you’re all feeling better today.
In terms of the technology, it’s incidents like this that provide the perfect impetus for finding new solutions and issues like this (which tend to be distributed, not common to everyone) that are well served by making connections with others on the Web. I hope your wiki finds supportive users within the Asperger’s community to help it grow. May I forward it along to someone I know whose child has Asperger’s Syndrome?
July 15th, 2009 at 3:06 pm
Thanks Vanessa. Yes please forward it to whoever could use it or help build it!
Do you think this project will work ok for Project 1? I forgot about the audience being the class. Thanks!
July 15th, 2009 at 9:44 pm
Thanks, I’ll pass it along. Not sure if she’s got time to do much there (5 kids, plus she’s also not very techy) but she would be quite interested and would likely pass it on to others.
Go ahead and do this for Project 1 because you have momentum guiding it and that makes sense. Perhaps you can reverse order and do something for the class audience on #2. I can already see some big ideas and stuff to serve the IS community coming into shape there and I know you mentioned the lack of community for online students before, so maybe something with that would be a good fit for you.