Dr Temple Grandin is the world’s best-known and respected autism author, speaker and advocate. Her books, including the New York Times bestseller The Way I See It, have sold in the millions, and many more are familiar with her work through the 2010 Emmy and Golden Globe winning movie Temple Grandin.
Richard Luscombe travels to Orlando to meet Dr Grandin before her appearance at a conference organized by Future Horizons, a leading provider of autism resources, publications and expertise.
IT’S not hard to spot Temple Grandin, even amid the large crowd that seems to encircle her wherever she goes. She’s the one who looks like she dressed up for a rodeo but took a wrong turn somewhere and ended up guest of honour at an autism conference.
The cowgirl outfit, of course, is Dr Grandin’s signature look, neatly bridging the divide between her groundbreaking work in the handling of livestock and animal welfare and her status as the world’s most famous autism advocate, a role in which she above all others has elevated the condition to unprecedented levels in the public psyche.
Before she takes the stage at the Future Horizons conference in Orlando, Grandin has graciously accepted my request for an interview. She walks over and offers her hand, and I show her a photograph of my eight-year-old son, who has what used to be called Asperger’s syndrome but is now considered an autism spectrum disorder (ASD) at the high-functioning end of the scale.
“How’s he doing?” Grandin asks me. “Got to control him on those video games, you know.”
Kids with ASD becoming addicted to video games has become one of Grandin’s biggest concerns, she says. “I’m hearing horror stories over and over and over. I’m hearing, ‘he’s 21 and I can’t get him out of the basement.’ I’m hearing that way too often. These kids are not getting good outcomes when they’re addicted to video games. It absolutely has to be controlled.”
Grandin’s recent book, The Loving Push, co-written with clinical psychologist Dr Debra Moore, addresses what has become a significant problem for autistic children and teens as they prepare for adulthood – kids not being pushed hard enough to leave their virtual worlds and spend more time in the real.
Statistics from the United Nations show that about 80 per cent of those on the autism spectrum are not working after graduating school while a separate 2013 study by Drexel University suggests that barely more than half – 53.4 percent – of young adults on the spectrum have ever worked for pay within the first eight years of leaving high school.
The truth is that there are likely myriad reasons for those worrying figures. But for one clue, Grandin says, look no further than the wide array of technology in the hands of today’s youth, the addicting tablets, laptops, smartphones and especially the video games consoles that were unknown to previous generations.
The technology itself is not the problem, Grandin is keen to stress, pointing out that gadgets like iPads can be hugely effective and beneficial teaching aids when their use is facilitated and regulated by a teacher or parent. Where the trouble lies is in how the technology is used. Too often, she says, kids are left unsupervised, and for way too long.
“We now know that children, teens and adults on the autism spectrum are extra-vulnerable to becoming fixated on screen-based media,” she and Moore write in The Loving Push.
“[But] screen time is not interacting with others in the real world. This deprives our kids of learning social skills, how to negotiate differences and how to resolve problems. It also misses opportunities to expose our kids to lots of different kinds of people with lots of various interests.”
Grandin tells me that reducing and regulating kids’ screen time is an essential ingredient of the wider and necessary strategy of stretching autistic kids beyond their comfort zones, introducing them to as many and varied “real world” experiences as possible, and encouraging and helping them to find their own interests and directions during the progression towards adulthood.
“When I was 15 I had the opportunity one summer to visit my aunt’s ranch,” Grandin said, recalling an experience from her own childhood. “I didn’t want to go. I was afraid. My mother gave me the choice. I could go for a week and come home if I didn’t like it or stay for the whole summer. Not going at all wasn’t an option. So I went, and I loved it, and I ended up staying all summer. Once you stretch, you are glad you did. It changed my life for the better.”
The point Grandin makes is that there is a world of opportunity out there for our autistic kids to explore, and a wealth of available opportunities to help them to learn and become the most well-rounded and complete adults they can be. But now, more than ever, it’s the responsibility of parents and caregivers to push them into it.
Too often, she says, parents sit back and make excuses for why their spectrum kids can’t do something instead of guiding them towards the activities in which they can.
“A lot of parents tend to over-protect. I see them talking for the kid,” Grandin tells me. “We just got to get kids out, get them out doing things for themselves. Give them choices… you can do Lego Mindstorm robots or you can do scouting. You give them choices and no surprises. What you got to do with these kids is you’ve got to stretch them, but you don’t chuck them in the deep end of the pool. If they don’t stretch they don’t develop.”
Grandin also sees a growing disparity between children more severely impaired by autism and those towards the higher functioning end of the spectrum. “When I was a little kid I was real severe, I was the kind of kid they used to throw away in the 1950s. [Now] your more severe autistic people are getting much better services,” she says.
“But your kid who has no speech delay, who’s just a socially awkward kid, I think some of those are doing worse, because they’re not learning how to work early on. Kids used to have paper routes when they were teenagers, it taught work skills. We have to start teaching work skills long before they graduate from high school.
“They can be volunteer jobs, they can be church jobs. In middle school they’ve got to start doing a job outside the home that’s on a schedule. I’m seeing too many kids who aren’t developing. Get paper route substitutes, start walking dogs for the neighbours, every morning, 6 o’clock. Fix computers, work in a farmer’s market, maintain a church or neighborhood website. It’s a responsibility. And for grade schoolers, chores at home.”
“If these kids end up on social security at the age of 23 then we’ve failed. Addicted to video games on social security is not a good outcome. You’ve to break his butt out of his room, and it’s a lot easier to do that as a little kid.”
Grandin acknowledges that, for some at least, working towards careers that are popular with many with autism, skilled trades for example, or the arts, has become harder. “One of the bad things our schools have done is taking skilled trades out,” she says.
“In some of our states you can learn math, English and sports. Auto shop has gone, music has gone, theater’s gone, welding’s gone… I worked with a lot of people in the skilled trades who were on the spectrum. How’s a kid going to find out if he likes welding if he never tries it? Try it, hate it, fine. I tell every single student, regardless of what level they’re at, try on a career.”
But she does accept that corporate America is better than it was at accommodating employees who are on the spectrum, and in many cases embracing them. “There are a lot of big companies doing a lot of good things. I’ve been to Nasa, I’ve been to Silicon Valley, Asperger’s, mild autism, it’s all over,” she says.
The key is getting those who are able to the point where they can be considered for employment and the responsibilities that brings: “One Aspie goes to the tech company, one Aspie goes to his basement to play video games, it’s the same Aspie. He just needs to get out of his room.
“I want people to be successful in careers they like, but they’ve got to learn that it is called work. Even in the best jobs there’s grunt work that you’ve got to do that’s not fun.”
After our interview, Grandin kept an audience of hundreds enraptured for 90 minutes as she spoke of her own childhood, the strategies her mother Eustacia Cutler, herself now an esteemed autism advocate in her own right, used to help and guide her daughter’s early years, and shared her enlightening thoughts about autism today.
She is a forthright speaker, and has little time for those who place people with autism into a single basket. “It’s a very wide spectrum,” she told me as she prepared to take to the stage ahead of her presentation.
“The big mistake that people make with autism is they over-generalize. Once [autistic children] get older I’m dealing with Einstein, Silicon Valley, skilled trades and artists, or I’m dealing with somebody that’s got very severe problems, no speech and can’t dress themselves. And it’s all called the same thing.”
Grandin’s assistant walks over, looking at his watch and it is clear that our time for talking has come to an end. I thank Grandin for her time and cheekily ask her to write a dedication to my son inside the front cover of my copy of her bestselling book The Way I See It, which I’ve been hiding in a bag beside me waiting for the right moment to bring it out.
She writes his name, and mine, places the pen back down lightly on the table, lifts her head and looks me straight in the eye.
“You watch him on those video games now, you hear?”
Copyright West Atlantic Media 2016. No part of this article may be reproduced without the author’s prior consent.