An article published in the UK newspaper The Independent was recently brought to my attention. The article in question describes a computer "game" that is actually a simulation of what it is like to live with autism.
More specifically, the program focuses on the sensory issues faced by people on the spectrum (light, sounds, and so on), and--going by the description in the article--exaggerates these features of the setting in the game (a playground) to give the user an idea of how the world looks from an autistic perspective.
After taking the time to consider the implications of such a "game," I have a few thoughts. On the one hand, this is a remarkable concept. For almost all my life, I have had to explain myself and what it is like to see the world through my eyes. Individuals on the spectrum are tasked with having to constantly explain ourselves to "neurotypicals," and this is especially daunting when you have difficulty verbally expressing yourself.
For there to be something like this that could just give people a straight-up lens into my experiences could make a huge difference in extending compassion and assistance to people on the autism spectrum, especially less affected folks who often have a more difficult time getting help because we don't "look" like something is "wrong" with us.
On the other hand, however, this is also a dangerous concept, and one that could do a great disservice to people on the spectrum. There's a saying that goes "If you've seen one person with autism, you've seen one person with autism," and the same holds true for how each person is affected by their autism--some are more affected, some are less affected.
To truly give the family members or loved ones of a person on the spectrum an idea of what it is like to have autism, you would need to specifically tailor this program to the issues of that individual, because "one size fits all" absolutely does not apply here.
Another concern I have is that the creators are referring to this as a "game." For those of us on the spectrum, this is distinctly not a game; it's our lives, and what we go through on a daily basis. We can't hit pause, or mute, or turn it off when we don't want to deal with it anymore, and it worries me that neurotypicals who would try this would fall into that line of thinking.
Also, oftentimes people on the spectrum are described as being "robotic," and it concerns me that a program like this would inadvertently give credence to the idea that we're somehow "not human"; that we're more like computers or machines, and thereby reinforcing that "otherness" and the accompanying stigma that we've all struggled with for so long.
Stepping back and looking at the bigger picture, I can see what the program's creators are trying to do. But I also think that the details are incredibly crucial, and such a program could end up being very problematic on certain levels.
This program is a significant move in the right direction, and offers the potential to give non-spectrum people a window into autism, and could prove tremendously beneficial to families and individuals in their attempts to obtain appropriate services and supports. But it is far from perfect, and could certainly use a long list of disclaimers, addenda, footnotes, etc. to go along with it.
Great post! I agree with you that balance is important, i.e. helping people understand what it's like to have autism without making it seem that every autistic person is identical.
ReplyDeleteBalance, however, is hard to find. Much of the information that's accessible tries to generalize about the experiences of autistic people to make a larger point. Even individuals who describe their own experience with autism often are making the point that those experiences are similar, if not identical, to others.
This is inevitable to a point. But your post emphasizes the importance of watching out for that misconception and trying to think of people as individuals first and example second. Kudos!
Hi Amy,
ReplyDeleteI'm one of the creators of Auti-Sim. Very nice post, I enjoyed reading it.
I have one thing to mention: the use of the word 'game' is not meant to imply there is anything fun about hypersensitivity. In fact we deliberately avoided anything that could be perceived as gamification of the concept (i.e. scores, win/lose conditions, etc.). In the end, we kinda got stuck with the word 'game' because:
1)We built the project with video-game technology,
2)There was no other way to convey the full extent of interactivity in the experience,
3)I hosted the project on a gaming portal, because they offered free hosting
4)The project went viral after a video game journalist discovered it on an online forum where I posted the link looking for feedback.
Further thoughts on number 2 above: our project is not the first one to be questioned about its gameyness (or lack thereof), and it won't be the last. The interactive medium is evolving so rapidly that language is lagging behind in trying to express all its various branches. Imagine what it would be like if you had created one of the first pop-up books ever, and the term pop-up was not invented yet. It's kinda like that for us, and we started using 'game' as a descriptor for lack of a better alternative. Hope this clears some confusion.
Also, I agree with you 100%, future versions of the project will include appropriate disclaimers and warnings and textual information to make sure people do not get the wrong message. Unfortunately the tool that we used for creating the project was on trial when we were working on it, and it has since expired. So I can't go back in to change things. :/
Hi Taylan! Thank you so much for commenting. I'm glad you had a chance to read and reply to my post! It is very interesting to hear about the process of creating Auti-Sim, and I appreciate that so much thought and effort went into it, and the reasons why certain aspects ended up the way they did. I am also happy to hear about the considerations being made for future versions, and it speaks highly of you as a program creator that you are listening to the feedback from individuals on the spectrum and their families. My very best wishes to you on your future endeavors, and if I personally can be of any assistance to you with your work, please do let me know.
DeleteVery informative post. Thanks for sharing
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It's an intriguing idea for sure. I'd love to be able to see the world my kids see it to understand it all better for them. But having two spectrum kids has shown me that no simulation could be accurate - my two kids could not be any more different, what calms my son renders my daughter hysterical.And I could see it leading to gross generalizations and furthering the misconceptions you mentioned.
ReplyDeleteHave you tried eating virgin coconut oil, it has made miracles happen with people that have autism, like going from not being able to talk, and then increasing in vocabulary.
ReplyDeleteThanks for the post. I'm raising a seven year old boy w/ autism. He is verbal but delayed. He really struggles with abstract concepts so anything that gives me insight is appreciated.
ReplyDelete