Wearing a red IU-Purdue University Indianapolis Jaguars hoodie with his leg propped up on top of his knee, 12-year-old Jacob Barnett — friends and family call him Jake — sat at a table at Jacob’s Place in Kirklin, Ind., a free center for autistic and other special needs children founded by his mother.
“Usually (I’m) just hanging out, doing some homework, playing some Guitar Hero, et cetera,” Jake said, describing his typical Wednesday evening with a casual shrug of his shoulders.
What Jake didn’t mention is that his homework is from his University Physics textbook for the Physics 152 class he takes at IUPUI.
Jake, who was diagnosed as autistic when he was 2 years old, has taken classes at IUPUI since he first audited an IUPUI astronomy class in the third grade.
“He was 8 years old, and people thought I was in the class,” his mother Kristine Barnett said with a laugh. “They just thought that he didn’t have a babysitter and then he’d do all the math and they’d be like ‘Oh my gosh!’”
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Kristine said the stark contrast between the loquacious Jake of the present is miles away from the non-verbal Jake of 10 years ago.
Jake began to lose language skills at 18 months, and by the age of two he had lost almost all language ability.
“At the time Jacob was diagnosed with autism, “ Kristine said, “back then nobody had any hope for children with autism at all. We were told he would never talk. We were told he would never probably look at us. We were told he would have to be in special ed forever. It was devastating.”
Ten years later, Jake finished high school. Now, every Tuesday and Thursday he sits in the IUPUI honors college lounge, helping students almost twice his age with math and physics problems.
For many parents with non-verbal or low-functioning autistic children, Kristine said the question might be “How?” How does a child who at two years of age did not speak, now communicate effectively enough to tutor others?
Dawn Johns, a friend of Kristine’s, sat on the same bright red couch as Kristine. Her son, Tanner Johns, likely has Sensory Integration Disorder. She credited Jake’s progress to Kristine’s patience.
“She is by far the most patient woman I’ve ever met,” Dawn said. “I just don’t know how she does it.”
Kristine sat quietly as Dawn continued to compliment her. With flecks of glitter delicately spattered across her face and clunky red platform sandals bouncing on the foot of her crossed leg, Kristine neither discounted nor affirmed Dawn’s ideas about her patience. Instead she called herself “artsy” and said her different way of thinking helped pull Jake out of his autistic shell.
Kristine recounted dancing to jazz music in fields while eating popsicles when Jake was young. It was that free spirit Kristine said she applied to understanding Jake’s autism and behaviors.
“I found what he loved and what he was good at and I ran with it,” Kristine said.
Most of Jake’s autism therapies after his diagnosis were focused on what he couldn’t do rather than what he could.
Dr. Cathy Pratt, director of the Indiana Resource Center for Autism, said there are many strategies and approaches to working with autistic children.
The approach embraced at Jacob’s Place is called floor time, which advocates following a child’s lead.
Kristine said she followed Jake’s lead with his “self-stimming,” or self-stimulating behaviors, and thought twice before considering them pointless.
“Jake was stuck over by the music box,” Kristine said as she recalled a particular instance. “He kept opening and closing the music box.”
The opening and closing of doors is another self-stimulating behavior many kids with autism do.
“Open, close, open, close,” Kristine said.
“Repetitive,” Dawn chimed in.
“Repetitive,” Kristine repeated. “He took the music box, brought it over to the counter, got the roll-out piano, pushed each key and started playing the Mozart the music box was playing. He had never touched a piano before that.”
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Jake said he is also typically autistic in the way he narrowly focuses on a particular subject — in this case, astronomy.
“(It’s) the reason I’m so interested in astronomy and math,” Jake said. “I think it’s due to that autism, because when you have autism you become especially interested in one thing.”
Jake said when he’s not helping college students in the lounge, he’s tutoring special needs kids at Jacob’s Place during Wednesday night “Homework Buddies.” He said he also does his physics and math homework to learn even more about astronomy.
“I like to view online Yale courses on astronomy,” Jake said. “I also like to look up random articles on the Internet about astronomy.”
These aren’t average Wikipedia articles. Jake is often reading in-depth astrophysics journal articles. This intense focus in one area is why Kristine said it was so hard for Jake to stay in elementary school.
“Going to school for him was like trying to fit a square peg into a round hole,” Kristine said.
Jake said he has been bored in math classes for years and college courses allow him to work at a more appropriate speed.
“After third grade, the math started getting really easy,” he said. “Now I’m learning stuff that actually goes a normal pace.”
Jake meant college-math-and-physics-major normal, not 12-year-old, pre-algebra normal.
Kristine said it’s that emphasis on “normal” in the education system that lets kids like Jake slip through the cracks if someone’s not there to help them.
“I truly believe that in every skill is sitting a brilliant artist, and I think that they’re only getting to spend half an hour a week on art,” she said. “How will they develop their God-given gifts and talents if they’re not allowed? If they’re all standardized?”
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As Jake socialized and played with the Johns’ and other families’ children, Kristine recalled again Jake’s diagnosis 10 years ago and explained why she founded Jacob’s Place.
“Autism is such an overwhelming diagnosis,” Kristine said. “All of your time is caught up in going to these appointments and listening to what your child can’t do.”
She said Jacob’s Place is meant to help families with autistic children hear from families who have already been through the same process. Mike McGowen, the father of a child diagnosed with autism two months ago, sat silently on the couch. Then Kristine asked him, “How did you feel when they gave the diagnosis? When they said that word — autism?”
“We were clueless,” Mike said. “We didn’t know a whole lot about it. Where do we go from here? How do we change our lives to help him be a better person?”
Mike also said the social component is one of the most important aspects his son gained from Jacob’s Place.
“When they were testing him,” Mike said, “one of the things they asked him was ‘If there was anything in this life that you’d like to have, what would it be?’ And he said, ‘I want friends.’”
At Jacob’s Place, Mike said his son gets to experience friendship and develop social skills that he hasn’t been able to before.
As Kristine began talking again about how much she wants Jacob’s Place to be able to do for other people’s kids, Dawn interjected.
“See there?” Dawn asked. “She’s always thinking about what she can do for other people’s kids.”
Dawn then began rattling off all Kristine has done to help other people’s children.
“She used to run this free summer program for the sensory kids, and she sold her car one time to help families,” Dawn said.
Kristine and her husband also used their life savings to buy the building for Jacob’s Place with help from a local philanthropist.
“All of the stuff that’s here,” Dawn said while gesturing around the room. “She brought things from her house to (Jacob’s Place). They go without things to help other people’s kids.”
Kristine said she doesn’t think the sacrifices she made are particularly remarkable and that there is only one reason why she and her husband made the decisions they did.
“I want people to have hope,” Kristine said. “I mean, that is why I do this. That’s why I would sell a car. That’s why I would give up my retirement. It takes an extreme effort to pull a child out of autism, but I don’t think it’s impossible, and I think every family can do it if they try.”
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Dawn called Jake’s story inspirational.
Nine years ago, Jake was just beginning to regain language skills. Now professors at IUPUI want Jake to move into a research position there, but Kristine and her husband Michael aren’t sure what Jake’s next move should be. As news about Jake spreads, Dawn said she has seen some people question whether Jake will have a chance to be a kid.
Jake said he doesn’t think he’s missed out on his childhood. He said his decision to keep his autism label, despite doctors’ declarations that he has recovered, shows he embraces what autism has given him.
“I’m talking to you at this instance so I don’t have any of the language stuff anymore,” Jake said. “I practically recovered for all of the language stuff, but I think the autism is the reason I’m even at IUPUI so I don’t like to drop it even though I could.”
