What I Wish Would Show Up When You Google 'Autism'
I recently read a terrific article reviewing a new television drama series centered on autism. The show is called “The A Word” and is a six-part series produced by the BBC (as far as I know it is still currently only available to watch in Great Britain but reflecting on the growing ease-of-access to international entertainment, I am certain it will come available in the U.S. soon).
The article about the show that I enjoyed was written by an adult on the spectrum and her father, and one of the things that stood out for me in the article was the father’s description of his daughter’s challenges in school, identifying it as a realm on the spectrum called “demand avoidance.”
What he described was so familiar, sounding so much like what my son experiences, that I wanted to learn more about this “demand avoidance.”
More to the point, I wanted to learn about tools and strategies to see if we could adapt them to help my son with his struggles at school.
After an initial search online, I discovered very little information that I could use, and it was frustrating.
There is a lot of information available about autism on the Internet — in truth, there is too much information about autism on the Internet. A lot of the information is too clinical to be of use (such as scientific papers) or too generalized (such as new media articles painting autism in broad, often stereotypical strokes).
Very few search results offer concrete tools and strategies for specific issues. In a lot of ways I think the disparate and unfocused information about autism currently available online mirrors the disparate and unfocused way our society has responded to understanding autism.
What I would really love to see is a one-stop shop of autism information; a site that would start at the 30,000-foot level (the broad strokes information) and then allow readers to drill down on the particular issues they need information about, all the way down to the clinical, in-the-weeds scientific papers if they really wanted.
The site would describe all the extraordinary that is on the autism spectrum, connecting the dots between research and theory, behaviors and experiences, tools and strategies, and the social and cultural.
It would offer tools and strategies for specific behaviors and needs, as well as opportunities for readers to interact with others to enrich what they know and are learning on their respective journeys.
Most importantly, the site would be alive; it would not be a dead repository of set, unchanging information, but instead would be constantly monitored, updated and evolve to reflect changing scientific and social understandings of autism, informed by its readers as much as by researchers, scientists and evidence-based studies.
If and when such a site shows up first in my internet searches, I will know our society has truly matured in its understanding of autism.
Follow this journey on Autism Mom.
The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.