by Annette Wood
The campers—ages three to twenty-one—were divided into groups by age. Since Asperger’s is more common among boys, there were lots more boys than girls. The group just older than ours, filled with students from second through fifth grade, included only one girl.
Our group worked on social skills. At first, the students just sat there while teachers and assistants attempted to interact with the participants. We divided into two groups and threw marshmallows at one another. We again divided into two groups and wrapped colorful crepe paper around two of the students to create animals. In the beginning, I played many games of Connect Four with Clark, one of the campers. Gradually, the students made friends with each other.
Not that there weren’t problems. Brian had a huge meltdown the second day. Connie, a tall, powerful woman, carried him out of the room kicking and screaming. People scurried out of the way. Helpers moved several chairs. Connie called his mother to come and get him. He was back the next day, and he was fine.
At the end of the week when I arrived a little late, I was amazed at what I heard. The kids played together quietly in groups of two or three, obviously getting along. They had finally found a place they could fit in, some for the first time.
“Connie is our Mary Poppins,” said Teri Loper, the parent of a child on the spectrum, who spoke at a ceremony honoring Connie. “She offers answers, guidance, understanding, patience, and love. Like Mary Poppins, Connie’s bag is bottomless; she continues to pull from it new and creative ideas to help those in the CARE [Community of Autism and Resources Education] program.”
“I have a lot of respect for these parents,” said Connie. “They live every day with the triumphs and challenges of autism. Their dedication and drive to seek out and access the appropriate resources and support for their children often puts them in positions of frustration and despair. When we are all able to find a common ground and work together for their children, it becomes a rewarding experience with a much brighter outcome.”
Parents need information on how to advocate for their child. Many parents don’t know how to work with the system, especially after elementary school. They need to know how to advocate for their middle schoolers or high schoolers or college age kids. Connie helps them do this.
Erbert, along with Heartspring, founded CARE in Wichita, Kansas, a metropolitan area of about 500,000 people. Assuming the statistic that one in sixty-eight people have autism is correct, there are thousands in the Wichita area with some form of autism. Through the CARE program, parents and children attend workshops, camps, and conferences specifically designed for families that have a person on the spectrum. She trains community members and business and law enforcement agencies about living with, employing, and understanding persons with autism. Every day she advocates for people on the spectrum.
For her work, Connie has received national recognition. Exceptional Parent Magazine honored Connie with its Model of Excellence in Education in 2008. In 2011, she received one of three Unsung Heroes of Autism awards from premium Swiss chocolatier Lindt USA and Autism Speaks.
Erbert graduated from Fort Hays State University and has done graduate work through the University of Kansas and the University of North Carolina. She worked in the Wichita public school system as the autism behavioral consultant for ten years. Erbert has presented on various topics related to autism spectrum disorders throughout the state, as well as nationally. Her training certifications in various areas of autism research include extensive, up-to-date work with the structured teaching model through the University of North Carolina TEACCH training in functional behavior analysis, assessment, and behavior intervention plans covering all aspects of developmental disabilities through the University of Florida; completion of training with the developmental, individual difference, relationship-based approach floor time model under Stanley Greenspan and Serena Weider; training in the area of applied behavior analysis; and participation in over a hundred conferences, workshops, and symposiums throughout the United States.
Connie has spoken at the same conference as Temple Grandin many times. After a convention, she shared these observations: “Having seen Temple speak a number of times over the years, I noticed a rather substantial change in her presentation skills as well as the content of her presentation. She was much more animated [and] personable, and was able to elaborate and expand her presentation through anecdotal side stories, which made it all the more interesting. Obviously, the passage of time along with practice via her numerous speeches over the years have afforded Temple the vehicle with which to hone her lecturing skills. A good example of how individuals with autism learn to cope as they get older.
“I think sometimes we might forget, because autism isn’t always a disability we can see, it can be a very subtle disability that sometimes becomes more evident when sensory issues crop up. In the midst of Temple’s talk, and shortly after she explained her sensitivity to loud, high-pitched sounds, a door alarm was accidentally set off by one of the conference participants. It took about ten seconds for the alarm to stop, and all the while, looking at Temple’s face, you could see that it was indeed painful. Barely audible was Temple’s verbal response to a question she asked herself, ‘Why is a burglar alarm going off in the middle of my talk?’ The alarm ceased and she proceeded without even addressing the painful interruption. It was apparent she had developed coping skills for just such occasions. While the interruption was painful, she was able to get through her presentation without displaying the obvious level of discomfort she must have been feeling.”
Connie was born in Mt. Clemons, Michigan, a suburb of Detroit. Since her father was in the army, her family moved frequently. When she was three, the family moved to Pueblo, Colorado. In Pueblo, she had her first memories of watching television shows, including Mayberry RFD. The theme of that show, which she said is “Do the right thing,” stuck with her. “My job is to increase autism awareness,” she said. “Increasing autism awareness increases opportunities”—opportunities for those with autism, for family members of persons with autism, and for the community. Her favorite quote is from Robert Breault: “Sometimes to do the right thing, we must keep a promise we never made.”
When she started the Autism Awareness Walk in 2008 at Heartspring, she hoped people on the spectrum and their families would connect with their community in a common goal. Every year since then, the number of participants has doubled.
Connie started Camp SSTAR because she realized the need for many children with Asperger’s to experience social interaction in a safe, organized, and fun environment. She also did it because those with Asperger’s have so much difficulty making friends. Camp SSTAR has evolved over the years. A new greenhouse, an arts program, and new technology programs are featured. One advantage of Camp SSTAR is that Connie gets acquainted with the campers’ parents and has a chance to follow up with them.
SSTAR scouts grew out of Camp SSTAR. The kids learn social skills through scouting. Also they have fun. And Connie has another chance to meet parents.
“A primary focus of my job is working with parents,” she said. “I believe in the ‘airplane theory’: put an oxygen mask on the parent first, and then put one on the child.”
She advises and informs parents. She knows they often go through difficult times. Gretchen and Sean DiGiovanni have triplet boys, Sam, Paul, and Jack. Sam has autism. Gretchen eloquently expresses the feelings of many parents: “This holiday season, while you are shopping, dining out with friends, taking kids to a Christmas activity, going to a sporting event, visiting family, entertaining in your home, exercising, or reading a book, I ask you to put yourself in the shoes of someone whose family is affected by autism. These things are challenging for them. The battle of emotions, stress, guilt, worry, and mental distress can be overwhelming and exhausting. And the families live with this twenty-four hours a day, seven days a week. What if he gets up in the middle of the night and gets out of the house? Why does going through the drive-thru have to be an all-out war? How a
re the siblings learning coping behaviors in this crazy environment? Screaming, self-injury, and inability to communicate are continuous struggles for some.”1
As an educational consultant, Connie works with many young adults on the spectrum, including some belatedly diagnosed with Asperger’s. One of those is Scotty, now twenty-four. He has struggled to come to terms with his past experiences and new diagnoses, which is painful and exhausting for him and his family. Scotty writes: “Though I had no problem plowing through the works of James Joyce entirely of my own accord, I rarely turned in my homework. I could not learn to drive or even throw a baseball. I didn’t seem to understand the difference between making friends and taking hostages.”
David Finch, author of The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband, told strangers at a party that he wanted to become close friends with them “as soon as possible.” This speaks eloquently of the disconnect and loneliness of these often isolated persons.
Connie informs the public in a number of ways. For example, she gives talks about autism to policemen, since “a person on the spectrum is seven times more likely to have contact with the police than someone who isn’t on the spectrum.” Because of this, parents of young adults with autism are eager for law enforcement officials to be educated about their concerns.
When asked, she teaches local business owners. A business owner in Wichita, Jerry Winkler, asked Connie to talk to his staff about autism because his adult son, Jonathan, would be working in the family business. She talked to employees about Jonathan’s talents and challenges, encouraging them to speak to him and cheer him on throughout the day. “Their understanding and willingness to learn was exemplary,” she said.
Connie’s class, Exploring Careers, instructs young adults with autism. They explore various options. One student toured Red Rock Canyon Grill with the restaurant’s head chef as part of his career exploration. Another pulled bulbs at Botanica Gardens.
This remarkable woman receives email and phone calls from parents and clients in the area daily. As I interviewed her, the phone rang several times. “I can’t talk right now, but I do want to discuss this,” she said. “Give me your phone number and I’ll call you tomorrow.” Connie has been known to answer a call from a frantic parent in the middle of the night.
In one year, CARE staff provided many individual, family, and school consultations. With phone consultations, that number rose. Most of the meetings were within Kansas, while some were throughout the United States, and some were international. Using technology, out-of-state and international interviews were made via email or Skype.
Heartspring participates in World Reach, an organization that is dedicated to touching lives all over the world through professional training and meetings. It takes part in international conferences and collaborates with individuals and organizations in other countries.
Several from Heartspring, including Connie, traveled to China and India to train other teachers about autism. Teachers from China and India have also traveled to Heartspring.
By raising awareness and supporting families, Connie impacts lives around the world. “The more we share and care about those around us, the more we can learn, grow, and become one community of people passionate about changing the lives of those diagnosed with an autism spectrum disorder,” she said.
“What works for one child doesn’t necessarily work for another. You have to be flexible and try things,” said Connie. “Never give up. You just don’t know what will work.”
Autism is a relatively new diagnosis. A cause for the majority of children with autism hasn’t been found, but that’s not the main focus. The issues of the individual need to be addressed, so the child can live as independently, productively, and happily as possible.
Because the cause and cure remain largely unknown, desperate parents are vulnerable to “snake oil.” I have talked to family members convinced that expensive vitamins are going to cure their child of autism. Connie helps families identify strategies that will work for them.
In April 2014, Heartspring celebrated a historic Care Walk. Jonathan, a young adult with autism and a beautiful voice, sang the national anthem. Jeff Colyer, lieutenant governor of Kansas, presented a ceremonial copy of the recently passed autism insurance bill in Kansas. Connie said the bill was a “long-sought-after first step in providing increased early intervention of autism for families in Kansas.” Heartspring is a good model for other places in the US.
Autism is the fastest growing underfunded developmental disability in the United States. One in every sixty-eight children has been diagnosed with autism spectrum disorder, according to the CDC. Treatment for a child with autism averages $7,000 to $9,000 a year. CARE provides services for over five hundred families a year. Nearly 60 percent seek financial assistance. No one is turned away.
The Autism CARE Walk at Heartspring is growing. In 2012, eight hundred people walked. In 2013, twenty-five hundred people walked. In 2014 almost four thousand people participated and raised $101,012. In 2016, over seven thousand people walked.
• Erbert left Heartspring in early 2015 because she saw a gap in the system for young adults with autism. An estimated fifty thousand Americans with autism will turn eighteen as part of the surge of children diagnosed in the 1990s. Many of these children have graduated from high school with average to above-average GPAs. Some have even graduated from college. Often these persons with high-functioning autism lack the social skills to acquire the employment they need to live on their own. An example is Josh Zimmerman. He graduated from college with honors, but the only job he could find was cleaning out dog cages for a veterinary clinic. He is one of many in the same situation.
• Autism Avenue Flower and Gift Shoppe opened in December 2015. It provides a structured work environment with on-the-job training and real-world work experience for young adults with high-functioning autism. It’s a for-profit shop, sponsored by Independent Living Resource Center.
• The first group consisted of twenty-five individuals. The goal is for each one to live independently and obtain his or her job of choice. As individuals graduate from the program, others with similar needs will be brought in. The goal is for employees to leave Autism Avenue and enter the community workforce equipped with skills and confidence. Efforts reach far beyond the store as founders of Autism Avenue strive to educate other potential employees.
“The more we inform ourselves about autism spectrum disorders, the more we can support, encourage, and include individuals on the spectrum in our schools, workplaces, and communities,” said Connie.
Fortunately, there are more and more Connies getting involved in the autism community.
CHAPTER 12
STEVE JOBS AND THREE REMARKABLE AUTISTICS
Though never formally diagnosed, Steve Jobs had many Asperger’s traits. Whether the topic was computers, stock options, or pancreatic cancer, Jobs liked to make his own rules. He could focus intently, and he insisted on being in control. Unaware of people’s feelings, Jobs frequently stomped on them. Brutally honest, he lacked the filter that restrains people from venting wounding thoughts. He saw things in black and white. He obsessed over details. He always dressed in a black turtleneck and jeans, even wearing the same brand. All of these traits are signs of Asperger’s.
A genius, Steve Jobs will be remembered for creating the gadgets that have pervaded our lives, putting a thousand songs in our pockets, developing a microcomputer, and enabling the nonverbal to communicate. He founded a company at the intersections of art and technology, humanities and science, creativity and engineering. He possessed the greatest designer’s eye in the world.
Jobs created the iPod, the iPhone, and the iPad. His Pixar entertainment company gave us Toy Story, The Incredibles, Finding Nemo, Cars, and Up, establishing the computer-generated animated feature. Credited with popularizing the computer mouse and all the Mac computers, great and small, Jobs was a giant in the world of technolo
gy.
This visionary understood he was making media. He transformed lives with the idea that computers are something that belong in your life, not a science lab. “They are not just for numbers, but also for music, movies, magazines, creation, communication. You want to use them, play with them, touch them, carry them with you,” Jobs said.1
Steven Paul Jobs was born in San Francisco on February 24, 1955, to University of Wisconsin graduate students Abdulfattah “John” Jandali, a Syrian immigrant, and Joanne Carole Schieble. They were twenty-three. Unwed at the time, they put him up for adoption.
John and Joanne married in December 1955. Steve’s sister, novelist Mona Simpson, was born in 1957. John and Joanne divorced in 1962.
Steve was adopted by Paul and Clara Jobs. When Steve was five years old, the family moved to Mountain View, California. Paul Jobs, a machinist for a company that made lasers, taught his son basic electronics and how to work with his hands. “Jobs’s father taught him that a drive for perfection meant caring about the craftsmanship even of parts unseen,” reports Walter Isaacson in Steve Jobs.2 Though he had a better life with the Jobs family than he would have had with his biological parents, all his life Steve was haunted by his adoption.
Jobs attended junior high and high school in Cupertino, California. He frequently attended after-school lectures at Hewlett-Packard, and was later hired there. He grew up in Silicon Valley, with its mixture of engineering and counterculture.
Steve Wozniak, five years older, was an electronics hacker when he met Steve Jobs and they became friends. “Woz” made a blue box that let users make free long-distance phone calls. Jobs marketed it—their first collaboration. Ironically, much later Jobs would sue Google for selling the Android, saying they had stolen the idea from the iPhone.
After high school graduation in 1972, Jobs enrolled at Reed College, dropping out after only one semester. In 1974, he took a job as a technician at Atari, a manufacturer of video games. He saved his money for a spiritual retreat to India and came back a Buddhist with his head shaved and wearing traditional Indian clothing. He remained a Buddhist all his life. He loved the Buddhist saying: “The journey is the reward.” During this period, Jobs experimented with psychedelics, which he said influenced him greatly.
