The last 72 hours has seen a whirlwind of activity regarding the Autism Positivity 2012 Flash Blog and those words “I wish I didn’t have Aspergers.” It has been incredible to witness. To recap – A group of bloggers devoted days of their time and energy to come up with and create the Autism Positivity Flash Blog. They then reached out to all the bloggers they knew, asking for each to contribute something. New contributions were posted every 15 minutes on the last day of April, with more trickling in after that. I don’t know what the total ended up being, but it was well over 115 contributions. As a result of their efforts, a whole community of Autistics, Aspergers, Parents of Autistics and Parents of Aspergers were galvanized and inspired to come together in support of any Autist who has ever felt – marginalized, less than, misunderstood, ignored or alone – even if for only a minute. It was an incredible show of strength in numbers, of people working together, of a diverse and vibrant community uniting and reaching out to another (anonymous) human being.
Yesterday, Genisa, the person who typed those words commented on the piece I’d submitted to Huffington Post. Because the Huffington Post limits comments to 250 words, you have to break your comment down into segments and submit each segment, hoping they’ll be published in the order you submitted. As both Genisa and I found out, this was not what actually occurred. HuffPo moderates all comments that come in and because of the massive numbers of comments they are (I’m sure) quickly overwhelmed with content they cannot keep up with. So Part 2 of my 3-part response was never published at all, and part 5 of Genisa’s comment wasn’t either. It was incredibly frustrating and I felt somewhat horrified when I realized that people were going to read just the last part of a very personal comment and one which made me feel incredibly vulnerable to misinterpretation that I’d written in response to Genisa’s. About four hours later the first part of my comment was eventually published, which still did little to mitigate my frustration. (Someone on Facebook suggested those lost comments end up with all those random single socks that somehow never make it into the light of day between the washing machine and dryer. I kind of love that!)
Genisa wrote in frustration – “I am noticing a pattern here. They are only posting the first and last of cont. posting. I had to post 6 posts to get all of what I wanted to say out. How can anyone understand what I said if all they post is the beginning and end of what I was trying to say? It is leaving out all of the details, the important stuff. This is how it is every day living with Aspergers. I tend to not ever get the whole message people try to tell me, because I am so focused on the details. But when most of it is left out, I just don’t get any of it.”
“This is how it is every day living with Aspergers.” The analogy being drawn between the frustration of not fully getting everything someone is saying, whole chunks of what is being said are erased, and trying to make sense of it all anyway, while being expected to respond was so powerful to me. I thought – What if it was this way when you tried to express yourself as well? What if you had a whole idea, something you wanted to relate to another person, but then had to submit it (say it) in short segments, yet it came out scrambled and not in the right order with some of what you wanted to say not coming out at all? What if this was your constant experience in attempting to communicate with others? Imagine if every time you had a conversation with someone this was your experience in both receiving information and giving? Imagine how incredibly frustrating that would be. Imagine if this happened not once, when you could shrug it off knowing that it was a one time annoyance and while irritating not an ongoing problem, but each and every time you spoke. Imagine that your experience of communicating was to have people routinely misunderstand you or respond to the last part of what you’d said without hearing or understanding the first part. Imagine if when people spoke to you, you lost portions of what they were saying. Imagine what it would be like to ask them to repeat themselves and have them lose their patience with you. Imagine if you were scolded, ridiculed, called names and punished for not giving an appropriate response. Just imagine how that would make you feel.
Can you imagine?