by Annette Wood
At the time, his hygiene was a problem. According to Walter Isaacson, he insisted that his vegan diets meant that he didn’t need to use a deodorant or take regular showers. He would soak his feet in the toilet.3 For understandable reasons, this repulsed his co-workers. He embraced extreme diets, including purges, fasts, and eating only one or two foods, such as carrots or apples. At one point, Jobs ate so many carrots he turned orange.
The two Steves, Jobs and Wozniak, launched the Apple company out of Jobs’s parents’ garage in 1976. “I was nowhere near the engineer Woz was,” Jobs freely admitted. “He was always the better designer.”
On May 17, 1978, when Jobs was twenty-three, the same age his parents were when he was born, his daughter, Lisa Nicole, was born. Her mother was Chrisann Brennan, his first serious girlfriend. Though already wealthy, he denied paternity, while Lisa’s mother went on welfare. He eventually acknowledged he was the father.
Jobs met Laurene Powell, blonde, brainy, and beautiful, while speaking at Stanford University. Laurene had graduated from Stanford with an MBA. They married on March 18, 1991. She was tough and a sensible anchor for his life.
Reed Paul Jobs was born in 1991. He adored his father and they had a great relationship. Though Reed looked like his father, he possessed attributes lacking in Steve, expressing affection and empathy. Like his dad, his favorite way of discussing a serious subject was taking a long walk.
With his daughters, Jobs was more distant. Erin Sienna was born in 1995 and Eve in 1998. The family lived in Palo Alto in an ordinary, easily accessible house.
Their half-sister, Lisa Brennan-Jobs, also lived with them off and on. Her relationship with Jobs remained rocky, though she came to visit him when he was very sick, which pleased him greatly.
On January, 24, 1984, at Apple’s annual shareholders’ meeting, Jobs introduced the Macintosh, which became the first commercially successful small computer with a graphical user interface. Also that year, Steve and his biological sister, Mona Simpson, found each other and became close.
At the end of 1984, the computer industry experienced a sales slump. Apple’s declining sales resulted in short tempers and great tension within the company. A power struggle developed between John Sculley, Apple’s CEO, and Jobs. The board of directors sided with Sculley and ousted Jobs in 1985.
Jobs remained the largest Apple stockholder with more than $85 million in shares. In 1986, he bought the Graphics Group (later renamed Pixar) from Lucasfilm’s computer graphics division for $10 million.
In 1997, Jobs returned to Apple, which had acquired his new company NeXT for $400 million plus the services of Jobs. When he came back, he was a far better manager. He revived Apple, then near bankruptcy. He became permanent CEO from 2000 until August 2011, shortly before his death. Jobs created irresistible products and great companies. Two of the best companies in his era, Apple and Pixar, were founded by Jobs.
Jobs’s tumor was discovered in 2003. It turned out to be a rare and operable form of pancreatic cancer. Jobs put off surgery while searching for an alternative, which included his usual extreme diets and fasts. He waited more than nine months before having surgery and then claimed it was a success. This was a sign of his “reality distortion field,” well known at Apple.
Jobs spent a lot of time building his legacy. He pushed people to perfection, inspiring loyalty to Apple. “He made me do things I didn’t think I could,” said one executive. He left a strong team. Jobs had taken medical leave three times, leaving Tim Cook in charge. The company performed well with Cook at the head. In August 2011, Jobs resigned from Apple.
The world watched Jobs’s health anxiously, which must have been agony for Jobs, who was a very private person. He grew noticeably thinner and weaker. “His pancreas had been partly removed and his liver had been replaced, so his digestive system was faulty and had trouble absorbing protein. Losing weight made it harder to embark on aggressive drug therapies. His emaciated condition also made him more susceptible to infections,” Isaacson says.4
He died on October 5, 2011 at the age of fifty-six. His wife Laurene, all four of his children, and his sister Mona were at his side. He had asked to be buried near Paul and Clara Jobs.
Jobs’s final triumph was the Apple iPad, released in January 2009. The first month Apple sold one million iPads, which made it the most successful product chronicled in history. By July 2011, 500,000 applications (apps) had been created. There were more than fifteen billion downloads.
“What Jobs did was perfect other people’s inventions. He optimized them. He buffed and polished other people’s ideas. Jobs wasn’t an idea man; he was a remix artist,” says journalist Lev Grossman.5
Jobs understood what the public wanted and even anticipated it, transforming several industries in his lifetime. His life can be summarized by a commercial Apple made in 1997, which included the line: “The people who are crazy enough to think they can change the world are the ones who do.”
The iPad helped a group in which Jobs had little interest: nonverbal autistics, which represent approximately 30 percent of persons with autism. Many family members and workers of those with severe autism use the iPad to communicate. Autistics like order and control, and are fascinated by the iPad. It doesn’t work for everyone, but family members and workers using iPads are discovering there’s more inside the heads of those with nonverbal autism than they had previously been able to express. Family members and workers had suspected this for years.
What’s new about the iPads is that it’s a mainstream device being used for communication with the nonverbal. The iPad is far less expensive than most other speech communication devices, and it’s easy to carry.
Temple Grandin said, “Unlike computers, in tablets the keyboard is actually part of the screen, so eye movement from keyboard to the letter being typed is minimal. Cause and effect have a much higher correlation. That difference could well be meaningful in allowing people with extreme sensory problems to communicate.”6
“The speed at which this has taken off and become entwined in special education is something I’ve never seen before,” said Lindsay Dutton, MA, CCC-SLP, director of School Therapy and Applied Technology at Heartspring.
At Heartspring, autistic children undergo an extensive evaluation to see what kind of communication device and which apps or programs are best for them. Children are tested on six to eight different devices. “There are a lot of communication devices. We want to find the right fit for the student, not fit tech to students, so we test on a variety of devices. We don’t try to fit the iPod or iPad to the student,” said Dutton.
In order to get insurance to pay for the device, a qualified speech therapist has to do the AAC (Augmentative Alternative Communication) evaluation. If the communication tool is an iPad, there are numerous apps available. The apps vary in quality. “People writing apps don’t necessarily have a language background,” said Dutton.
“There’s no peer-reviewed research on iPads; it’s all anecdotal,” said Dutton. “There’s a newness factor that parents should be aware of.” However, some children benefit enormously.
The Grace app gives some nonverbal autistics a chance to “speak” for the first time. It starts with four hundred images that were chosen by nonverbal people as communication starters. Categories include colors, food and drink, my body, and places. Grace allows the users to build their “photo vocabulary” by snapping their own photos to use within the app. The app’s creator, Lisa Domican, named Grace after her autistic daughter.
Another app is iConverse, five communication tiles that represent basic needs: food, drink, bathroom break, sick, and help.
An AAC (Alternative Augmentative Communication) device can be as simple as making gestures to interact. And you don’t have to be nonverbal to benefit from it.
These tools allow a child to express their feelings, thoughts, and needs. He can ask for things at home and school. She can be understood better with less frustration. The goal is to encourage independent
social interaction by allowing the child to take control.
* * *
Soma Mukhopadyay from Bangalore, India, developed a method that parents of autistic children are really excited about. Her son, Tito, is severely autistic with uncontrollable movements, but he writes eloquently and independently about his autism and what it is like. His poetry reminds us that you cannot assume what is going on inside the head of someone who is unable to communicate.
When Tito failed to develop properly, Soma, a former chemistry teacher, took him to doctors in India. She ignored their warnings about her son’s lack of abilities. From infancy, she read constantly to him. She watched Tito stare at a calendar, wanting to understand it. When he was two and a half, she started teaching him to count and read the alphabet, using a chart. Soma read Tito one of Aesop’s fables and asked him what it was about. He pointed to letters on the chart that spelled out “crow.” Assuming he understood, she read to her son from Dickens, Hardy, and Shakespeare. She educated him in mathematics, including geometry. She played classical music. All this time, Tito was in constant motion of tremors and paroxysms, eyes gazing far off. Soma ignored this.
She moved his limbs through the motions Tito needed to make in order to write, helping him feel the muscle movements, talking all the time. She attached a pencil to his right hand with elastic bands and guided him as he traced the alphabet on paper. This tireless and tenacious taskmaster prodded her son constantly, still talking. At the age of six, he began to write by himself using a pencil.
From eight to eleven, Tito and his mother wrote The Mind Tree: A Miraculous Child Breaks the Silence of Autism, an accumulation of heartfelt and startling perceptions about being imprisoned inside an autistic body and mind.
Tito remembers looking at himself in a mirror, willing his mouth to move. “The image stared back,” he wrote. This only emphasized the third-person point of view that disconnected his thinking self and his acting self.
Now Tito and his mother are in the United States, astounding people in the autism world. They are an outstanding example of what parents may be able to teach their children.
An interviewer asked Tito, “What would your life be like if your mother had not taught you?” He wrote: “I would be a vegetable.”
Dr. Michael Merzenich is emeritus professor from the University of California at San Francisco Medical Center. Dr. Merzenich has a BS from the University of Portland and a PhD from Johns Hopkins. He’s a well-known neuroscientist who specializes in brain plasticity, the brain’s ability to change.
“That’s probably a fair assessment,” Dr. Merzenich said, confirming what Tito would have been like if his mother hadn’t worked with him. “He’s a beautiful example of the possible,” he said.
Soma has used effective, noninvasive tools to bring children with autism out of their shells. She is now the educational director of Helping Autism through Learning and Outreach (HALO). She developed the Rapid Prompting Method (RPM) to teach her son. Soma educates people with autism on how to learn and reason, how to communicate and express ideas. She shows people with autism, previously unreachable, how to let people in and how to know who they are.
Soma emphasized her no-nonsense approach in an interview on Danaroc.com. “Just because Tito has autism doesn’t stop me from insisting he pick up his clothes and clean his room just like everyone else.
“Everyone participates in society. I’m short, but I am still a part of society. Tito has autism, but he’s still one of us. An autistic child just needs someone to do certain things for him. Everybody needs something. We all need each other.
“If you sit over there and expect and hope, you are wasting good energy,” added Soma.
* * *
Jeremy was born in 1989 and shortly afterward diagnosed as severely autistic. When he started high school, he was in a class for severely mentally handicapped students. In 2010, Jeremy graduated from Torrey Pines High School in San Diego with a 3.7 grade point average. At his high school graduation, he gave one of the commencement speeches.
Jeremy was fourteen when he went to Soma Mukhopadyay. His mother, Chantal Sicile-Kira, who lives in San Diego, drove Jeremy to Los Angeles, two hours each way, to see Soma twice a month for a year and a half. Soma taught Chantal as well as Jeremy.
Jeremy and his mother wrote a book together called A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence. A former TV producer based in France, Chantal is an award-winning author, columnist, and speaker on autism.
Though he obviously thinks, Jeremy remains essentially nonverbal. He has written articles for publication and wants to be a writer who explains what it’s like to have autism. Jeremy wrote, “Having autism hinders my ability to talk, not my ability to think.”
Jeremy communicates several ways. He has some verbal requests and points to written words and phrases. He uses a QWERTY keyboard as a letter board. His high-tech communication devices include an iPad or Lightwriter (a portable text to speech communication aid).
Chantal knew all the therapies available and had the resources to try them. Jeremy has benefitted greatly. One of Jeremy’s many difficulties is auditory processing problems. After Auditory Integration Therapy (AIT), he said, “Before therapy, I heard all sounds the same. I could not pick out the voice of the person speaking to me from the sounds in the background. I believed all sounds were noise.”7
He has received treatment for vision processing problems as well. Jeremy said, “Before vision therapy, I could only see fragments instead of seeing objects as a whole. Faces looked like portraits painted by Picasso.”8 Jeremy has benefitted greatly from his therapy.
* * *
Naoki Higashida was born in Japan in 1992. He wrote The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism with David Mitchell. This slim book in question-and-answer format was published in Japan in 2007 and in the US in 2013. It became a New York Times best-seller.
Naoki said, “Many children with autism don’t have the means to express themselves and often even their own parents don’t have a clue what they may be thinking.”9 Naoki wrote this because, thanks to his mother and an excellent teacher, he can express himself. He also had access to David Mitchell, who has a child with autism, and his wife, Ka Yoshida, who translated Naoki’s book from Japanese.
Naoki answers many questions about why people with autism do what they do. For instance: Why do people with autism talk so loudly and weirdly? He said, “When I’m talking in a weird voice, I’m not doing it on purpose. I’d be okay with a weird voice on my own, but I’m aware that it bothers other people.”10
Until recently, no one knew how to reach the thousands of nonverbal autistics, each trapped in his own world. Many have not had the advantages that Jeremy and Tito had. Of course, there are different levels of intelligence among people with autism as there are among all people. Still, many more must be reachable.
CHAPTER 13
TWO SEVERE AUTISTICS
“Autistic children seem ‘wild’ for a lot of different reasons,” Temple explains. “A huge problem for autistic children is scrambled processing. The world isn’t coming in right. So young autistic children end up looking wild for the same reason Helen Keller looked wild: parents and teachers can’t get through to them.”1
The families of Jan (my sister) and Neil (who we will discuss later in this chapter) include older children who had developed normally, so their parents knew what normal development was like. I’m sure neither set of parents knew anything about “scrambled processing.” My sister Jan was born in 1954. Our parents had never known anybody like her. Neil was born in 1994. He had four older neurotypical siblings. His parents were baffled, too.
“Autistic people have so much natural fear and anxiety that when they’re young they can be like little wild animals. For years people thought autistic people were unreachable because they were uncontrollable. A lot of people think that the feral children we’ve heard about over the years were actually au
tistic,” said Temple.2
We certainly knew about the “wild” part. Jan was large for her age, wiry, wiggly, and fast. She had blonde braids, brown eyes, and olive skin, tanned from her beloved outdoors. Mama, who only weighed 110 pounds, said, “Jan was always going in every direction, except the one she was supposed to. I knew I had to have my running shoes on to keep up with her.”
At that time, we had no understanding of the topsy-turvy world she lived in. We did know Jan had autism. But even that much knowledge was rare for that time and place. We lived on a farm in Kansas. Jan had been diagnosed in Chicago in 1958 when she was four years old. We and most of the rest of the world had no idea what autism meant. Leo Kanner had discovered it only eleven years before Jan’s birth.
According to Temple, a high fever at a young age is one of the causes of autism. Jan experienced a high fever at the age of eight and a half months. Though we didn’t know it at the time, Jan probably had encephalitis.
Temple also says that autism is caused by “a complex inheritance of many interacting factors.” There are often milder traits in siblings, parents, and other close relatives. Some traits that seem to be associated with autism are intellectual giftedness, shyness, learning disabilities, depression, anxiety, and alcoholism.3
Many of our relatives displayed one or more of these traits. Jan was the only one with autism.
Jan recovered slowly from her fever, able only to drink 7Up for a couple weeks after her illness. For many days she was pale and weak. Soon after she recovered, we noticed a change in her personality. “Jan stopped talking and concentrated on walking,” my mother wrote in her baby book.