Imagine this: You’re dropped into the middle of a country where you don’t understand the language at all — and, as hard as you try, you can’t learn even the basics. Yet people keep talking at you, demanding things, asking pointed questions, wondering why you won’t communicate. You know you need to adapt to get around and survive, but it’s just not happening.
For David Kaufer, this is the scenario he envisions when it comes to understanding what it’s like to live with autism. His now-12-year-old boy, Stone, was diagnosed on the spectrum just shy of his third birthday. And, like many parents with autistic children, Kaufer was at a loss.
“You just don’t know what to do,” he says. “A lot of it is just trial and error. You’re grasping at straws, hoping that something is going to connect and help your kid progress.”
Know the Numbers
According to estimates from the Center for Disease Control’s Autism and Disabilities Monitoring Network, 1 in 68 children have been diagnosed with Autism Spectrum Disorder (ASD), with boys four-and-a-half times more likely to have the disorder than girls. And the total costs per year for children with autism were estimated to be as high as $61 billions, while average medical expenditures exceeded those without ASD by $4,110–$6,200 per year.
Families all across the world are suffering and going broke to help their children. But despite all this, there is much we still don’t know about the disorder, and resources to help those impacted are all too scarce. What can be done?
One area of research that has shown promise is in pre-K intervention. Dr. Connie Kasari, Professor of Human Development and Psychology and Psychiatry at UCLA, has been among the most prominent researchers of autism over the past three decades. She developed a program called JASPER (Joint Attention, Symbolic Play, Engagement and Regulation), a methodology that takes the child’s lead when it comes to interaction, rather than having the parent, caregiver or specialist primarily initiate. It also encourages the use of technology — such as iPads — to facilitate communication among non-verbal kids. There has been evidence that this intervention could be not only successful in direct one-on-one therapy, but also pre-K classroom settings.
“I think we can make a lot of improvements functionally in terms of outcomes,” says Dr. Kasari. “But it requires a concerted effort. It’s not going to be a magic pill.”
There’s also the Early Start Denver Model, which follows a child’s interest in recreational activities (such as songs and play time), along with basic routines, and incorporates parent coaching. After two years of engagement, participants — who were four years old when the intervention began — showed an increase in IQ, communication and adaptive skills.
Kaufer personally has seen improvement in his son thanks to changes in diet and a speech program that involves phonics, along with word context comprehension. Stone has progressed far enough that, a couple of months ago, he started to read for the first time in his life. “I wasn’t really sure if that was going to happen,” Kaufer says.
Perhaps that’s the biggest thing to keep in mind from all the noise out there about autism, whether it’s about the root causes or prevention debates or the benefits of this therapy vs. that: Children like Stone who deal with ASD on a daily basis can make real progress, and they shouldn’t be forgotten.
“Just like any part of parenting, this has been a journey,” Kaufer says. “But Stone is motivated and engaged. And has been a rock star through it all.”
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How frustrating would it be for any of us to be in a world where we can't communicate?
What You Can Do
Show understanding. Children or adults who are on the spectrum aren’t antisocial by nature — they just are frustrated by the inability to communicate. “Having empathy goes a long way,” says Kaufer, who adds that Stone is a funny, engaging and happy 12 year-old, who charms those around him.
Avoid commercials. “There’s a lot of marketing with different interventions, and they often don’t have much evidence behind them at all,” says Dr. Kasari, who doesn’t charge for the use of JASPER among caregivers. And Kaufer points to nonprofits that tend to fly under the radar, such as N of One (which looks at environmental factors behind ASD). “People need to look broadly, not at the ones that get the most PR,” he says.
Help those impacted. Think about organizations that directly help families get access to resources and interventions that can improve quality of life. “We have this huge population now that are currently children and teens that are aging up — what’s being done to help them adapt and develop so they can be independent, productive adults?” asks Kaufer.
Original contribution by Gabe Guarente, Content Manager at Giving Compass
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