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.

TOPICS
,
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

Why Is There a Divide in the Autism Community?

Looking back on my son’s first few years, nothing seemed “off.” I’d only really seen made-for-TV movies about autism, and let’s face it, I think they’re extremely poor representations of what autism is. Autism wasn’t something that was talked about openly and honestly 10 years ago. I think a lot of parents are naïve and living under [...]

Why I'm Not Afraid of Public Speaking as a Person With Asperger's Syndrome

As a self-advocate, I have done a lot of speaking engagements about my life living on the autism spectrum. I have presented at schools to students and teachers. I continue to share my story at trainings for therapeutic staff support and mobile therapists several times a year. I have even done a TEDx Talk called [...]

The Simple Question That Helped Me Advance in the Journey With My Sons With Autism

There are so many different parts to a journey with autism. Sometimes you may think you’ve got things under control, and then it can fall apart. Sometimes you just manage to get settled and then suddenly you’re starting all over again with another child. Sometimes you think you have a strong fierce warrior momma exterior, and then you [...]
young girl squatting with hands on head

Malaysian Filmmaker’s Movie About Autism Aims to Reach Global Audience

“Redha” is a film about Danial, a 6-year-old boy with autism, and the challenges he and his parents face. The independent motion picture was directed by Malaysian filmmaker Tunku Mona Riza, and she tells the Sun Daily that it was inspired by her close friend’s child, who has autism. After a lengthy discussion, Riza’s friend introduced [...]