by Annette Wood
CHAPTER 22
AUTISM IS A FAMILY DISORDER
Autism is a family disorder. This doesn’t mean everyone in the family has autism, but if one person has severe autism, the whole family is affected. There’s a strong genetic component, so there’s a good chance that one or more members of the extended family has Asperger’s. The Grandin family pattern—a mother very involved with the autistic child, a distant father who probably had Asperger’s, and siblings who don’t speak out—is unfortunately very common.
Of all the factors that shape your personality—your genes, your parents, your peers—siblings are at the top, according to one major theory of human development. The relationship with your sisters and brothers will likely last longer than any others in your lifetime. If one of the siblings has autism, it makes a huge impact on the family.
Temple was born on August 29, 1947, in an era when autism was nearly unknown. The second child in the Grandin family was born in May 1949, the third in 1953, and the youngest in June 1955. Four children in eight years. Obviously, they were close in age and undoubtedly did many things together. “Temple is autistic when it suits her to be autistic. And normal when it suits her to be normal,” the siblings grumbled. This is a common complaint among siblings.
“A normal child doesn’t need to be told that the nonverbal autistic sibling requires more attention from their parents—that, in many ways, the world of the family revolves around that child,” wrote Temple.1 Even a verbal child with autism makes an enormous difference.
Autism affects every aspect of life, but autistics are not all alike. They are all individuals. As the mantra goes, “If you’ve met one person with autism, you’ve met one person with autism.” Four times as many boys have autism as girls. Autism affects people of all races, incomes, ethnic groups, and religion.
Temple says that fortunately none of her siblings are autistic. She says that her sister, one and a half years younger than she, was the most affected by her autism because Temple got all the attention. Temple was interested in anything that flew—kites, airplanes, rockets. Her sister wanted to be a ballerina, “the last thing I wanted to be,” said Temple. The two were in school at the same time so her sister suffered from teasing about “that weird Temple.” The younger siblings, who arrived five and six years later, were never in the same school.
Temple’s siblings did not attend the awards for the HBO movie, Temple Grandin, because they didn’t want to be identified.
Dick Grandin, Temple’s father, had survived the Battle of the Bulge. He wanted to return to the life he had known in Boston. As a peacetime dad, he had the embarrassing intrusion of a kid who didn’t fit in. “Men take autism harder than women. It insults their sense of honor,” said Eustacia Cutler at the autism conference I attended. All too common among parents with a child who has autism, Temple’s parents divorced when she was a teen. “Fully 80 percent of couples with autistic children break up,” says an expert.2
Like most autistics, Temple shrank from touch for years. I was startled when I met Natalie, a slim seven-year-old in a sundress, in the waiting room of a busy restaurant. She flitted from person to person hugging everybody. She sometimes said, “I love you.” Reactions varied.
I asked her how old she was and where she would be in school. No answer. Her mother volunteered that she would be in first grade in an autism class. Natalie doesn’t answer direct questions, but she does interact with others in her own way. It was refreshing to meet a child with autism who hugs everybody.
Natalie’s mother divorced Natalie’s father and has remarried. Natalie lives with her mother and stepfather. She has no siblings.
I interviewed Tim Carney, Neil Carney’s next older brother. Neil was diagnosed with autism at three. Now twenty-two and a student at Wichita State University, Tim was three years old when Neil was born. “I don’t remember life before Neil,” he said.
Neil and Tim were roommates for twelve years. Neil didn’t sleep well. After having Neil for a roommate, Tim can sleep through “almost anything.”
“Neil affected our family so much more than we realize,” Tim said. “I think it was a greatly positive effect.”
Neil’s mother told me that she thought the four older kids have much more compassion because of Neil. “They don’t want to see anyone made fun of. Neil doesn’t understand when he’s being made fun of, but they do,” she said.
Tim said, “As Neil got older, he got more aggressive. He doesn’t like grooming—shaving, trimming nails, getting his hair cut. Neil bit through my shirt and took out a chunk of flesh once when I was trying to help my mother with these necessary tasks.
“Neil can hurt you. You have to be careful,” said Tim. “You have to watch Neil 24/7. If you step away, he could disappear. You need to keep eyes on him all the time.
“Our family is extremely blessed. There are four older, responsible kids. Our dad is well-paid. Carneys are well-known in Wichita. Grandpa Carney was the fire chief. Many relatives live in the area. We have literally hundreds of cousins. Our grandparents watched Neil when he was younger. An aunt and uncle watched him, too.”
“Neil has no idea how lucky he is,” I said. Tim agreed.
Tim told me that the Carney family has unofficially adopted Bethany, Neil’s caretaker, as another sibling. She has taken good care of Neil for more than two years. “Bethany is passionate about what she does. We’re very thankful to have her,” said Martin, the middle Carney child.
“Growing up with Neil was frustrating,” said Martin. “He taught me patience, understanding, and not to make judgments. It was a whole family endeavor. I can’t help but wonder what’s going to happen to Neil when our parents are gone.”
“People like Neil open up new ideas. Like maybe I should think about something besides making one hundred thousand dollars a year,” said Martin. “Neil has encouraged an interest in psychology. Sometimes I have dreams where Neil was normal.
“I love him, but I realize Neil may not feel love like we do. I have lots of questions. Is Neil happy? What would it be like to have his brain? Does he see colors differently? Hear differently? Are his sensory pathways different?
“When Neil was having chronic rage fits from too much medication, I couldn’t imagine being drugged every day and not having the ability to communicate.”
Martin admits that Neil is better off now that he’s not on so much medication. So is his family. Everyone benefits from Neil’s current living situation, in a house with a caregiver.
“How does Neil function? I think it would be cool to do research about this. Neil has helped me with processing, critical skills dissecting. He’s been an interesting brother. I wouldn’t trade him,” Martin said.
“I was lucky to have normal siblings. We shared the experience of Neil together. We talked about Neil.”
Rachel Storey is a grandmother whose grandson has Asperger’s. She asked, “How much does a grandparent get involved?”
“We discovered Evan had Asperger’s between fourth and fifth grades,” said Rachel. “My fear was violence. When he got upset, he would double his fists, even at his father. I was afraid he’d hurt somebody. He’s always been a big boy. At school one day, they called the police, he was acting out so much. He’s always struggled in school, but no one could figure out why he had so much anger.
“When his mother sent him to his room, he took the screens off his bedroom window and escaped, which infuriated her. I knew he needed counseling. The parents said they couldn’t afford it. I said I’d pay for it.
“Once he was diagnosed, the blame game began—he didn’t get it from my family. My thought was, ‘It’s here. We’re going to deal with it.’
“The counselor at Kansas University taught us how to handle him. He just wanted to go out and walk around. To defuse himself. That’s what he does when he gets upset. Now he’s allowed to do that.
“When he was in elementary school, he walked the perimeters of the playground. They called him ‘The Giant.’ All
through late elementary school and junior high, a para[professional] sat next to him. He hated it.
“He’s always been mainly nonverbal. He frequently answers questions with a shoulder shrug. In a crowd he’s not going to say one word. If we’re the only ones in the car, Evan and I can have a conversation,” said Rachel.
“Evan doesn’t like attention. He hates to have happy birthday sung to him. He’s tall, six feet and five inches, and he was a good basketball player, but he didn’t like being the center of attention, so he quit.
“I’m helping Evan learn to cope with attention,” his grandmother said. “He’s learning to just say ‘thank you’ and move on.
“When his sisters are proud of themselves, they talk and talk. One of them got straight A’s [during the] last nine weeks, which she’d never done in her life. Finally Evan said, ‘You’re not the only one that got A’s. I got some A’s too.’”
Rachel gets tickled when Evan tells them to “cool it.” “It’s much better than punching them,” she said.
Evan’s family now understands people with autism. They are much more sensitive and understanding of the condition. And they are extremely proud of Evan, who finished his first year at college and is independent.
Gretchen DiGiovanni, wife of Sean and mother to Sam, Jack, and Paul, is the former director of development at Heartspring in Wichita, Kansas. Sam has autism. Gretchen and Sean knew they wanted children. When no children appeared, Gretchen visited the doctor. “You will have children,” he told her, “but it will be in vitro.”
The first time Gretchen went to the doctor for a prenatal checkup, he told her she would have twins. “The second time the doctor heard three heartbeats, so we knew early we would be having triplets,” said Gretchen.
Jack and Paul are identical. Sam was always a little behind them in development. Sam was a good, cuddly baby—not hypersensitive. His parents thought he was deaf. Sam was formally diagnosed with autism at the age of twenty-five months.
Gretchen belonged to a national triplet mom’s group. Of the thirty-five to forty families, 90 percent had some kind of fertility assistance. Quite a high percentage of the triplets have one or more on the spectrum.
“Though we had the advantage of early diagnosis,” said Gretchen, “it was a scary time.” She was staying home with the boys, working part-time in the business she had worked in formerly.
Now the triplets are thirteen and in the same school. “I would never have dreamed this would be the life we’d live,” said Gretchen, “but it’s good. Jack and Paul have each other to rely on. They model everything for Sam. Sam’s speech is good, but carrying on a conversation is difficult. He imitates TV shows, so he can say anything, but not necessarily know what he’s saying. Every month or so, he takes a sudden leap in improvement.”
Sam never forgets a teacher, a paraprofessional, or a therapist, and there have been many. The other night he said, “I’m anxious, Mom. I need to go to the North Pole.” Recognizing he’s anxious is an accomplishment for any thirteen-year-old, let alone one with autism. “That comes from good teachers,” said Gretchen. The DiGiovannis recognize there will be many unknown difficulties ahead, but that’s parenting.
Autism often impairs one’s judgment of what’s socially acceptable. Having a sense of humor helps immensely when dealing with this disorder. The Autism Society of the Heartland decided there’s enough humor for other people to enjoy, too. They organized a fund-raiser featuring parents giving comic routines about some of the incidents they’d experienced.
Chris Long told a story about going to McDonald’s with her husband Scott and their eleven-year-old autistic son Dakota. Although Dakota doesn’t talk, he loves to rub people’s skin.
“He’ll rub your arms or your back,” she said. “Any warm skin. He just loves it. So we’re at McDonald’s Play Place and he’s doing great. But pretty soon he starts rubbing this lady’s arm and she’s turning redder and redder.
“It’s summertime and she’s got this huge chest, and a very low-cut top. Dakota reaches in and grabs the woman’s boob and starts rubbing. I don’t know what to do. I’m like, ‘Scott?’ And he’s like, ‘What? You want me to grab the other one?’”
A grandmother told me that her mildly autistic grandson loved touching black fabric. Since many people wear black clothing, this could present some embarrassing situations. Many servers in restaurants wear black, as well as numerous people just walking down the street. Just imagine the problems with an obsession about touching black material could cause!
Family members find themselves in unusual situations: funny, stressful, and sometimes awe-inspiring. Here are some helpful suggestions for dealing with these situations.
Acknowledge feelings: Parents will feel shock, depression, guilt, anger, sadness, and anxiety. So will the siblings. With fewer life experiences, young people will be less prepared to cope with their emotions. Simple acknowledgement on an age-appropriate level can help. If life seems too difficult, some families will want to consult a professional.
Hold family discussions: Discuss problems openly in the family. Encourage questions and reactions. A disability needs to be talked about. In my family, lack of communication made understanding and living with my sister more difficult. Avoiding dialogue will only encourage hiding problems when family members are adults with families of their own. Children know the secrets of their parents. They know that something important is not being shared and cannot interpret the feeling that something is terribly wrong.
Keep informed: As parents learn about autism, so should other family members on an age-appropriate level.
Encourage everyone to go on after an embarrassing situation: Tiffany experienced many of these while growing up with her sister, Lindsay, who has severe autism. Once, when the girls were very young, they were in church singing, “Lord, have mercy.” Lindsay suddenly burst out screaming, “Oh, no, we’re all going to hell.” Her mother hastily took her out of church. Tiffany said, “For the good of everyone, forgive, learn from the situation, and go on.”
Have a sense of humor: This does not mean to make fun of the person with a disability or laugh at her. However, laughter helps. Ciara chose her disabled brother to attend the guest book at her wedding. “I chose him because I love him,” Ciara said. She worked with him for months on what to say: “Welcome to Ciara’s wedding. Sign the book.” What he actually said was, “You’re late. Go home.” “You have to have a sense of humor,” said Ciara. “He’s kept his through all that’s happened to him.”
Find a friend whose sibling also has special needs: Gordon, who’s seventeen, has a twelve-year-old brother with autism. He made a friend, the drummer of a band he plays in, whose brother is also in special education. “No one else knows what it’s like to have a brother with disabilities except my best friend,” Gordon said.
Promote an attitude of gratitude: Everyone has his own idea of thankfulness. At the age of three, my brother said, “Thank you, God, for green beanz, pork’n beanz, and all other else beanz.” Though I like beans, this would probably not be my top priority in the thankfulness department. I don’t do it daily, but I keep a gratitude journal. In the journal I write down five things I’m thankful for and date it. When I look back, I am reminded of what was happening on that day, as well as many blessings. There’s nothing magic about the number five. Two or ten will do as well.
Join a group: They provide support and information. Some suggestions: Autism Speaks, National Autism Society, and Autism Society of America.
Read: I’ve done a lot of this. There are lots of books about autism. Some of my favorites are The Horse Boy by Rupert Isaacson, Elijah’s Cup by Valerie Paradiž, and Temple Grandin’s Autistic Brain.
Use the Internet: Use the information. Visit blogs. New sites pop up all the time. Admittedly, some information on the web is worthless. Sharing with someone who has the same concerns is priceless.
Stay open to possibilities: Things are happening to benefit persons with autism an
d their family members all the time. What is known today is different from what was known ten years ago or even one year ago. Who knows what will be discovered tomorrow?
CHAPTER 23
AUTISM IS IN YOUR BRAIN
In the last ten years we’ve learned more about the inner workings of the brain than we’ve learned throughout the history of civilization.
“In the ancient world, physicians believed that the brain was made of phlegm,” writes Carl Zimmer in his article “Secrets of the Brain.” “Aristotle looked on it as a refrigerator, cooling off the fiery heart. From his time through the Renaissance, anatomists declared with great authority that our perceptions, emotions, reasoning, and actions were all the result of ‘animal spirits’—mysterious, unknowable vapors that swirled through cavities in our head and traveled through our bodies.
“The scientific revolution in the seventeenth century began to change that. The British physician Thomas Willis recognized that the custard-like tissue of the brain was where our mental world existed. To understand how it worked, he dissected brains of sheep, dogs and expired patients, producing the first accurate maps of the organ.”1
In the twenty-first century our interest has accelerated, especially since we have equipment that shows more details. In April 2013, President Obama declared a federal brain mapping project aimed at conquering challenges such as autism, Alzheimer’s, and epilepsy. He called it Brain Research Through Advancing Neurotechnologies (BRAIN). Experts hope such efforts will advance the fight against autism, Alzheimer’s, and epilepsy. It will take decades.