by Annette Wood
The focus on deficits is so intense and so automatic that people lose sight of the strengths of autistic children. “Rethink the problem. I want to hear about their interests, their strengths, their hopes. I want them to have the same advantages and opportunities in education and the marketplace that I did,” Temple says.14
What’s your child’s favorite subject? What does he like? What is she good at? Does he have any hobbies?
Everybody knows someone on the autism/Asperger’s continuum. Temple Grandin is living proof that the characteristics of autism can be modified and controlled. Autism tends to become less extreme as the person ages and learns to cope with it better.
After all, as Jerry Newport wrote in Your Life Is Not a Label: “No one is completely autistic or completely neurotypical. Even God has his autistic moments, which is why the planets all spin.”
CHAPTER 9
EUSTACIA CUTLER
“People who have loved a person with autism are your best resources,” said Eustacia Cutler. Eustacia, mother of Temple Grandin, was one of the first to wander through unknown waters as she overcame the difficulties of challenging the system for her autistic child. She understands the myth, reality, angst, and guilt a mother experiences in coping with a child who has autism.
Nevertheless, she sympathizes with fathers. “Autism is especially difficult for men. It insults their sense of honor to father an imperfect child.”
Siblings cope with a lot of negative emotions, too. I know. I’m the sibling of a person with severe autism.
I met Eustacia Cutler at an “Autism Across the Lifespan” conference given by Johnson County Community College in Overland Park, Kansas, a suburb of Kansas City. I’m sure she was surprised when I greeted her with, “I’m writing about your daughter.” I explained that I grew up in the 1950s with an autistic sister, showed her the cover of my book, A Different Kind of Kin, and gave her a copy.
Eustacia responded with characteristic graciousness. After her keynote speech, I saw her several times throughout the day, spoke to her at lunch, and even caught her dozing in the last session when we were all tired.
Now in her eighties, a small, perky woman with curly hair, Eustacia has four children, three younger than Temple. She lectures nationally and internationally on autism. She earned a B.A. from Harvard after her divorce, was a band singer at the Pierre Hotel in New York, and performed and composed music for the cabaret.
Her current book, A Thorn in My Pocket, describes raising Temple in the conservative world of the 1950s when children with autism were automatically institutionalized.
Eustacia notes that children on the autism spectrum are literal and have trouble understanding what they cannot see or touch. She says these children have difficulties with conceptual thinking (understanding the idea of something), context (the place we’re in and the situation), eye contact (understanding messages received this way), and shared information (understanding that the mind of someone else is separate and different from my own).
But she readily points out that these children can learn and grow. “We’re the only species born with an open skull,” she says. “Genes are far from being fixed.”
Temple has proved that. She has succeeded beyond Eustacia’s wildest dreams. “The older I get, the less autistic I am,” said Temple. She interacts with so many neurotypicals that she’s had to change. “If you call the boss an asshole, he won’t give you a job,” she notes.
Scientists have long suspected that the brain of an autistic is different from the brain of a neurotypical. Autism may be caused by disruption in connective circuits in the brain. On October 3, 2011, Temple had a brain scan on CBS’s 60 Minutes to show that she really does have a different kind of mind. Leslie Stahl, a broadcast journalist, and Dr. Walter Schneider, a neuroscientist from the University of Pennsylvania, looked at the results on national television, comparing Temple’s brain with one of a neurotypical person.
“There’s a dramatic difference,” Leslie said.
The neuroscientist agreed. Fibers in the neurotypical brain were tight and organized. Fibers in Temple’s brain were all over the place, a dramatic disorganization of wiring.
“Of course, we’ll have to scan more autistic brains to know for sure,” said Dr. Schneider, “but someday neurologists may be able to diagnose autism by scanning the brain.”
Eustacia recommends the work of V. S. Ramachandran, a medical bioneurological researcher named by Newsweek as one of the most important people to watch in the twenty-first century, to her audiences—parents and teachers of those with autism. Ramachandran said, “the uniquely human sense of self is not an airy nothing: without habitation and a name … the self actually emerges from a reciprocity of interactions with others …” Since people with autism have trouble interacting with others and interpreting those interactions, no wonder their sense of self is so shaky!
Ramachandran wrote Phantoms in the Brain: Probing the Mysteries of the Human Mind, a fascinating book. He says, “Freud’s most valuable contribution was his discovery that your conscious mind is simply a façade and that you are completely unaware of ninety percent of what really goes on in your brain.”1
Temple claims not to have an unconscious mind. She does not repress memories and thoughts like neurotypical people. “There are no files in my memory that are repressed. You have files that are blocked. I have none so painful that they are blocked. The amygdala locks the files of the hippocampus. In me, the amygdala doesn’t generate enough emotion to unlock the files of the hippocampus,” she wrote.2 Every visual impression of the world around her remains accessible in her conscious mind. One of the corollaries of possessing a powerful and detailed visual memory and not possessing an unconscious is that Grandin has no place to repress her memories.
“Denial’s an emotion I don’t have,” she said. “I don’t understand denial.”3
Ben Cutler, Temple’s stepfather, was an orchestra leader whose sounds ushered the society set from swing to rock to disco and back again. He worked in all the right places in New York, from the Persian Room at the Plaza to the roof of the Astor Hotel. He taught himself to play the soprano saxophone.
Eustacia and Ben had been married for thirty-six years when Ben died on January 5, 2001 in Bronxville, New York, at the age of ninety-six. By then Eustacia was well-established on the speaking circuit. She had officially started speaking to groups in 1999 when Wayne Gilpin, the president of Future Horizons, which publishes many books about autism and organizes conferences about it, asked her to make a trip to England to speak to mothers of children with autism. As the number of children with autism has increased, so has the need for information.
Many in the audience at conferences have a newly diagnosed child. The whole family echoes the confusion. “When the usual responses can’t grow, consciously and unconsciously, a whole family is changed,” Eustacia writes.4
In 1951, Eustacia must have felt alone in a world where autism was virtually unknown and only diagnosed in one of every ten thousand. She was fortunate to have money and to have Dr. Caruthers, who recommended that Temple have an EEG to see if she had petit mal, a mild form of epilepsy.
“The autism/epilepsy connection wouldn’t be discovered for another fifteen years, which puts Dr. Caruthers neurologically way ahead of his time,” Eustacia wrote.5 He was the expert who also recommended speech therapy and nursery school for Temple.
Eustacia came up with the idea of a nanny herself.
Eustacia continued following her remarkable instincts. “I was prepared for the workforce from an early age,” said Temple. “I had an alarm clock to get me up in first grade. At age thirteen, I worked for a dressmaker for an afternoon every week. In high school, I shingled a shed. People with Asperger’s need to learn to do things.”
To encourage her interest in art, Temple’s mother bought her daughter professional art materials and a book on perspective art drawing when she was in grade school. Like most mothers in the 1950s, Eustacia insisted on good behavio
r. By the age of five, Temple had to dress up and behave in church and sit through formal dinners at home and at her grandmother’s house.6
Eustacia did not let Temple lie around the house and never viewed her daughter’s autism as rendering her incapable.7 She was a good detective about what environments caused Temple stress. She recognized that large crowds and too much commotion were more than Temple’s nervous system could handle. When Temple had a tantrum, Eustacia usually understood why.8
When Temple was very young, Eustacia allowed her one hour every day after lunch to revert to autistic behaviors. During that hour Temple had to stay in her room. “Sometimes I spent the entire hour spinning a decorative brass plate that covered a bolt that held my bed frame together. I would spin it at different speeds and was fascinated at how different speeds affected the number of times the brass plate spun,” Temple recalled.9
With her extraordinary insights into her child’s needs and her instincts for finding ways to improve her child’s life, Eustacia Grandin is a good role model for mothers who have a child with autism.
CHAPTER 10
NORM LEDGIN
I met Norm Ledgin at a Kansas Authors Club Conference in Lawrence, Kansas. Norm and I both belong to KAC. His district was taking its turn hosting the state conference. I appeared alone in the breakfast shop at the hotel and looked for someone to sit with. I spotted Norm sitting by himself. Knowing he had written Diagnosing Jefferson and Asperger’s and Self-Esteem, and aware we have a common interest in autism, I asked if he minded if I sat with him. He responded graciously.
After we’d talked for a while, I said, “I’d like to write about Temple Grandin.”
“What do you want to know?” Norm asked. “I know her well. When you’re ready to call her, let me know and I’ll give you her number.” We kept in contact after the conference.
After I’d done a lot of research and writing about Temple, he said, “It’s time to call her. Let me give you Temple’s number.” He did. I nervously called and left my phone number. In about two hours, Temple responded. Since then, I’ve communicated with her numerous times.
After speaking with both Norm and Temple, I realized that their worlds collided. Temple says she takes satisfaction from realizing she has “something in common with a Founding Father.” She and Thomas Jefferson are both on the autism–Asperger continuum, which Norm Ledgin pointed out.
Norm Ledgin published Diagnosing Jefferson: Evidence of a Condition That Guided His Beliefs, Behavior, and Personal Associations in 2000, which identified Thomas Jefferson’s Asperger’s characteristics.
Norm and his wife Marsha are the parents of two children, one of whom has Asperger’s. Their son Fred received the diagnosis only two years after Asperger’s was defined in the Diagnostic and Statistical Manual of Mental Disorders. He was diagnosed in 1996 after his parents had consulted psychologists, psychiatrists, education counselors, learning disabilities specialists, and others for nine years. The psychologist who made the diagnosis handed Ledgin an article on Asperger’s. That was the first time the Ledgins had ever heard of or read about the condition. A school district staffer, who knew Fred had been diagnosed with Asperger’s, recommended Ledgin attend a conference in Chicago. Fred and his father both attended. They heard Temple speak, but they found little information there on Asperger’s.
This is not surprising considering Hans Asperger’s paper was only translated into English in 1991. Asperger, an Austrian pediatrician, published a paper in 1944 that described the characteristics of a milder, high-functioning form of autism. Asperger’s takes its name from him.
Ledgin’s interest in Jefferson goes back to high school, when he realized Jefferson was essentially a liberal philosopher, though many of his beliefs formed a basis for conservative views as well. At the time he decided to write about Jefferson, Ledgin was reading one biography after another and was in the midst of the six-volume work by Dumas Malone.
Ledgin writes, “Moving through major biographies about him over a period of several years, I concluded by the summer of 1998 that the repeated mentioning of his various idiosyncrasies suggested a pattern of behavior begging for identification. I noticed Jefferson’s biographers reached points in their narratives where they were forced to offer rationalizations for his oddities before moving on.”1
Ledgin had observed that his son Fred’s view of reality appeared different from most other people’s views, and he started tracking Fred’s Asperger’s condition. This led him again to Jefferson. He followed the similarities between Fred and Jefferson, and at first found twenty. When he found fifty, he started writing a manuscript, which he showed to Temple Grandin. She pored over three drafts before agreeing that Ledgin had made his point credibly. “Her patience with me was unlimited, and there was a driving force to her enthusiasm,” Ledgin wrote.2 “We talked on the phone mostly and actually met face to face at conferences in Kansas City and Denver in the late nineties.”3 Ledgin also drove to Denver to hear Tony Attwood, an Australian psychologist and author of several acclaimed books on Asperger’s.
Later, Ledgin realized there were other achievers in history with whom he could match modern diagnostic criteria for Asperger’s syndrome. That led to his lecturing on the subject of role models and, eventually, to writing Asperger’s and Self-Esteem. He researched biographies of famous geniuses to find that Asperger’s often contributed to their success.
In this book, Ledgin included Albert Einstein, Charles Darwin, Orson Welles, Oscar Levant, Marie Curie, Paul Robeson, Gregor Mendel, Béla Bartók, Carl Sagan, Glenn Gould, John Hartford, and Wolfgang Amadeus Mozart.
His books have opened readers’ eyes to the positive side of Asperger’s. Parents thank him for turning around the lives of their diagnosed children. He gives them hope in a world where the youngsters had felt like aliens.
Ledgin says: “I knew that my positive views would be useful, perhaps inspiring to parents of Asperger’s youngsters and especially to the teens themselves. Instead of making the kid feel strange, the parent can make him or her feel proud of who he or she is. It’s a pretty big deal to be in the company of Jefferson, Einstein, and Mozart. And there’s certainly no shame in being different as respect grows for the benefits of diversity.”
Although no two people with Asperger’s are exactly alike, Ledgin benefitted from his son, Fred. He saw firsthand “literalness, routinization, perhaps too strict an adherence to rules, a surprising use of advanced logic, a dogged pursuit of details, a hammering away at fixations, and a few uncommon perspectives of humor.”4
Diane Kennedy, an author and advocate for Asperger’s syndrome, writes: “They are our visionaries, scientists, diplomats, inventers, artists, writers, and musicians. They are the original thinkers and a driving force in our culture.”
Many adults are now being diagnosed with Asperger’s. Scotty, diagnosed with Asperger’s at twenty-four, says: “What do Batman, umbrellas, Marilyn Monroe, and retired pharmaceuticals of the 1950s have in common? I have been obsessed with all of them over the years.” Adults with Asperger’s need to know all about topics that grab their attention.
Susan Boyle, the singer, was diagnosed with Asperger’s at age fifty-two. She said she felt relieved. “I have always known that I had an unfair label put on me,” she said in the interview with the Observer newspaper. The church volunteer from a small Scottish town became a global sensation when she sang “I Dreamed a Dream” from Les Misérables on Britain’s Got Talent in 2009.
The contrast between her shy manner and soaring voice won Boyle legions of fans. She has sold more than fourteen million records around the world. The singer said she was glad she and others would now have a better understanding of the struggles she has experienced.
One of the reasons people think those with Asperger’s are peculiar is because of their sensory issues. Although these are not specifically mentioned as a criteria for diagnosis, they should be. “Some adults with Asperger’s consider their sensory sensitivity [to have] a greater im
pact on their daily lives than problems with making friends, managing emotions, and finding appropriate employment,” according to the Complete Guide to Asperger’s.
Ledgin remains an advocate for those diagnosed with Asperger’s. He still speaks at area conferences on the subject. He teaches a course in continuing education at the University of Kansas titled, “Explaining the Perplexing Thomas Jefferson,” the core of which is the condition to which Ledgin attributes Jefferson’s range of idiosyncrasies as well as his talents.
“I may be the first writer to come out and say that some of our geniuses made significant contributions creatively because of Asperger’s syndrome,” Ledgin said. “That’s because I know people with Asperger’s think differently from the way the rest of us think. The fact that so many of these contributions are unique leads me to believe we wouldn’t have had the benefit of them without the Asperger’s condition.”
CHAPTER 11
CONNIE ERBERT
Connie Erbert has spent her career working with children and adults challenged by autism, especially Asperger’s. According to the Centers for Disease Control and Prevention (CDC), one of every 68 eight-year-olds is diagnosed with autism in the United States. There are plenty of opportunities.
In 2007, when Connie Erbert came to Heartspring, a world-renowned institution in Wichita, Kansas, for persons with disabilities, she started the first Asperger’s day camp in Kansas, called Social Skills Technology Asperger’s Recreation Camp (SSTAR). Kids came to SSTAR from all over Kansas. I volunteered to help.