Social media helping autistic children ‘navigate the world’

From The Globe & Mail in Canada:

Jordan Hilkowitz (pictured) is layering household products into a beaker for his latest science experiment.

Right beside his mom’s coffeemaker on the kitchen counter, he is preparing a video entitled Layers and Density, describing each step for his 3,800 YouTube channel subscribers and more than 1.5-million viewers. It’s an extraordinary feat considering that five years ago, the 10-year-old autistic boy was non-verbal.

Jordan, better known as Doctor Mad Science, also has an audience of researchers who are intrigued by the fact that social media could be useful therapy for children with autism.

“I just want to say thank you to everyone who has written nice comments about my video’s [sic],” he posted on a previous video. “I sometimes have a hard time making friends and I now know there are some nice people out there.”

One in every 150-160 children has been diagnosed with autism spectrum disorders, neurological conditions that affect communication and social interaction.

But a growing number of children and young adults are harnessing the power of social media to bring them out of their shells, bolster their confidence and tell their stories – giving scientists a new and potentially transformative avenue to explore in the already extensive field of autism research.

Autistic children have long been drawn to technology, but what is it about these new forms of social media that changes behaviour?

“That part is very much a mystery. But it’s certainly attracting the attention of researchers,” said Peter Szatmari, a leading autism researcher, who is the head of child psychiatry and behavioural neuroscience at McMaster University and McMaster Children’s Hospital in Hamilton, Ont.

One theory, Dr. Szatmari said, is that the human face doesn’t have the same drawing power for an autistic child, and that something about technology triggers the motivation that’s lacking in face-to-face contact. “This can really have a big impact in helping people with ASD navigate the world and be able to do things that we never thought possible before,” he said.

Marc Sirkin, vice-president of social marketing at Autism Speaks, an advocacy group in the United States, said Jordan and others are using social media in such astounding ways that those who work with them are forced to take a second look. Carly Fleischmann, a non-verbal autistic teen from Toronto, for example, tweets about her disorder and other topics to more than 24,000 followers, and Nichole Lee, a 21-year-old from Utah, has a YouTube channel where she posts video blogs and speaks about autism.

“We think about people with disabilities [as] being intellectually disabled. As it turns out, there’s a large part of the autism community that’s not intellectually disabled. They’re just unable to communicate,” Mr. Sirkin said.

Jordan began posting science experiments on YouTube a year ago with the help of a babysitter. His interest in science came at an early age – he collected rocks, worked on circuits and, at one point, installed pulleys all over his house. When his focus turned to experiments, his babysitter suggested he appear on camera because she thought it would force him to work on his speech and perhaps gain confidence. Jordan searches for kid-friendly science experiments online, conducts them before the camera, and helps edit the videos. He’s made about $2,200 through his YouTube business, with the goal of earning enough to buy a Macbook.
For Jordan’s mother, the greater value is emotional.

Stacey Hilkowitz remembered that she once needed the help of security guards at the mall to remove Jordan when he was having a screaming fit, and how he would smash his head against the floor. “I’m so embarrassed,” Jordan piped in, covering his face with his hands. Ms. Hilkowitz quickly turned the conversation to how Jordan has changed, crediting that transformation to his appearances on YouTube. He’s loud and confident, his speech has improved, he has friends, and even served some time in school detention this year. “I know it sounds funny, but those are the types of things we want to see,” said Ms. Hilkowitz, who has an older daughter also diagnosed with autism.

“This is a good year for you, Jordan, a very good year,” she said to her son.

Sometimes Jordan has wanted to quit. He has been hurt by comments about his voice and the fact that he doesn’t enunciate well.

These days, Ms. Hilkowitz deletes damaging comments early in the morning. Viewers try to boost his confidence as well. “Six dislikes?????? Don’t worry you can always knock back their job applications in twenty years time,” one wrote.

Jordan is buoyed by those comments. “It really gets to people,” he said. “Like with my disability, it really gets people realizing that anyone can do [anything].”