One of a kind -- autistic and epileptic

Keith's picture appeared in this 1970 newspaper article when he was attending a new "pre-school for the handicapped."

By Steven Higgs
March 8, 2009

For Nila Sunday, the term “refrigerator mother” is more than a historic and discredited theory on the cause of autism. It’s a real and painful memory for the mother of one of the first autistic children in Indiana to be diagnosed.

The phrase was coined by Dr. Leo Kanner, an Austrian psychiatrist who first identified autism in 1943, 21 years before the birth of then-Nila Inman’s twin sons Kevin and Keith. In 1949, Kanner cited a "genuine lack of maternal warmth" and "parental coldness” as common threads in the families of children with autism.

“That was the first thing that I started to hear,” Sunday said. “And that was exactly the opposite of the way I was with my kids.”

Opposite is an apt term to describe Sunday’s 42 years of experience with autism. For 13 years after a ringing telephone triggered Keith’s first epileptic seizure in 1967, doctors treated his seizures without diagnosing his autism.

“They didn’t know,” Sunday’s daughter Leola “Katie” Wolfe said. “There wasn’t a diagnosis of autism.”

It wasn’t until Sunday attended a symposium on autism in Indianapolis in 1980, when Keith was 16, that she even considered it. Once she understood that her son was epileptic and autistic, she approached the Monroe County Schools’ special education director for help.

“He said, ‘Oh, no, we don’t have any autistic children in Monroe County,’” she said. “… He just blew me off and wouldn’t discuss it with me.”

***

Sunday lugged a weathered, gray, file storage box to an interview at Wolfe’s pottery studio on Russell Road, a few miles north of University Elementary School. She looked like an artsy million bucks, with two rings on each hand and a beaded silver necklace with an oval turquoise stone hanging low around her neck.

The metal box contains Keith’s life story, handwritten and scissor-clipped by his hyper-vigilant, ever-attentive mother. She kept a journal on his transformation from Kevin’s developmental equal at 2½ to a lifelong research subject for medical science, literally a day-by-day account of a unique medical odyssey.

“When he had his seizures, when he crawled, when he sat up, whether he cried tears, whether he focused with his eyes, when he walked -- all those things I had to record,” she said.

Sunday said she spent the night before reviewing the archive to prepare for the interview. The first memory she extracts from its contents is a full-page photo spread from the Oct. 19, 1970, Bloomington Courier-Tribune newspaper.

“This is Keith, here,” she said, pointing to a youth grinning at himself in the mirror wearing a “funny hat,” so dubbed by the caption. “He was in a pre-school program.”

Sunday started taking Keith to Riley Hospital for Children in Indianapolis soon after his first seizure 42 years ago this month. Every phone call set off a “staring spell,” followed by a “meltdown,” she explained. Over time, a day without a seizure was a “miracle.”

Keith’s symptoms perplexed even the specialists. They urged caution, Sunday said, telling her, “We don’t want to jump the gun.” But between 2½ and 5, much of Keith’s development, his speech, for example, had deteriorated.

“They were evaporating, just leaving him,” she said. “… He stopped speaking when he was about 5.”

By the time identical twin Kevin, who developed normally, was ready for kindergarten, the decision was made to enroll Keith in a “pre-school for the handicapped,” at that time located in the First Presbyterian Church.

***

In the years following Keith’s first seizure, Sunday drove him to

Riley, sometimes monthly, sometimes weekly. In 1970, he spent two weeks at Robert Long Hospital, Indiana University School of Medicine’s research and teaching facility. But to the doctors and everyone else, Keith Inman was an enigma.

One EEG would show an “eruption” on the right side of his brain, Sunday said. The next would show one on the other side. She can recall no other patient or family she met at Riley with the same problems as her son’s. “I was there many times, and I do not remember any other child, and I’ve seen a lot of kids,” she said.

Wolfe expanded her mother’s assessment to include every setting her brother has ever been in -- hospitals, schools, group homes. She doesn’t recall anyone “even remotely like Keith,” she repeated throughout the hour-long conversation.

Sunday continued: “It got so bad that they didn’t know what to do with him. I’d call, and they wouldn’t get back with me. They just didn’t know what to do.”

***

Sunday and Wolfe spoke regretfully about the early treatment regimen the physicians prescribed for Keith. They focused on his seizures, which in the 1960s and 1970s meant drug therapy, especially phenobarbital and Dilantin.

“Phenobarbital was horrible,” Sunday said. “He was just wild on phenobarbital.”

And when they gave him Dilantin, Keith would become intoxicated, unable to walk through a door, she said. On two occasions, he became borderline comatose.

At the time, the doctors assured her the anti-seizure drug was among the safest in use.

“Finally, several years later, it was discovered that he was allergic to the Dilantin,” Sunday said.

She once took Keith to Bloomington Hospital emergency room, where a doctor, unbeknownst to her, ordered that action not be taken to save his life. When she found out and raised hell, another doctor defended the decision, telling her he was “brain-damaged.”

Keith’s crooked teeth aren’t a symptom of his disabilities, she said. Some of the many drugs he was on caused his gums to atrophy.

“I went through this book last night, and I just got into tears,” she said, carefully turning journal pages. “I thought, ‘Here I was, according to doctor’s orders, just feeding him drugs, drugs, drugs. … And all along it just made him worse.”

***

The 1980 symposium in Indianapolis marked a turning point in the Inman family’s life. There Sunday heard doctors and psychiatrists from all over the United States talk about autism, a developmental disorder of unknown origin that impairs children’s behavioral, social and intellectual developments, just as had happened to her son.

She learned about a survey that Dr. Edward Ritvo at the UCLA School of Medicine had undertaken, and she enrolled Keith. “That was one of the first contacts that I was finally able to make,” she said, pulling from her file box an Oct. 21, 1980, letter from Ritvo about the Registry for Genetic Studies of Autism.

Ritvo, a professor emeritus at the UCLA med school, was a pioneer in the field of autism. He began studying it in the 1960s and co-authored the diagnostic criteria for autism disorders in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders.

His study explored the role that genetics played in autism’s development and surveyed identical and fraternal twins. A 1985 Ritvo study in the American Journal of Psychiatry reported that 61 pairs of twins enrolled in the registry, and 40 met the diagnostic criteria for autism.

Of the 23 pair of identical twins, 22 showed a “concordance for autism,” which means medical evidence of a susceptibility to the condition.

Kevin Inman, Keith’s identical twin, was tested, scanned and X-rayed, Sunday said. “He didn’t have anything.”

***

After

13 years, Nila Sunday finally knew what she was dealing with, medically speaking, at least. And despite the special education coordinator’s initial rebuff regarding his diagnosis, she kept Keith in special-ed classes until he was 20.

Keith’s time in the Monroe County schools was pre-mainstreaming, and he attended classes at Bloomington’s Stone Belt Center, one of the first facilities in Indiana to provide education and training for citizens with disabilities.

It was during this time that Janet, a teacher who had actually studied autism, changed Keith’s life. “She was good working with him,” Sunday said, “and she knew how to approach him. She didn’t get in his space.”

Janet taped Keith’s progress because she knew Sunday wouldn’t believe it. And when Sunday saw the tape, she couldn’t.

“He was sorting things,” she said. “He was recognizing colors, he was putting puzzles together. She was a wonderful teacher. But she wasn’t there but for a year.”

***

Keith grew up at home on Russell Road, where Sunday and Wolfe say he was treated like the rest of the family, which included an older brother Kenny, who was killed in an accident in 1995. And he received plenty of attention.

“I stayed home,” Sunday said. “I was home all the time. I didn’t work outside the home because I couldn’t.”

With an older brother and sister and a healthy twin, Keith was well-protected. “The kids were really good, I had good kids,” Sunday said. And with some work, she was able to keep Keith in the school system two years past the cutoff of 18.

When Keith was 20, Sunday learned about a residential program in Indianapolis that emphasized self-help skills, occupational therapy and other multi-dimensional approaches to developmental disabilities. “It sounded good,” she said, “and it was, for about a year-and-a-half.”

Sunday talks around the “bad experiences” Keith had with “some people” at the facility. Wolfe said he learned to be more cautious and reserved in his approach to people. In a lowered voice, she hesitantly described the experiences: “abusive.”

***

Since 1990, Keith has lived in a Stone Belt group home in Bloomington and worked various jobs in the community through the nonprofit agency’s training center. His latest is helping the Hoosier Hills Food Bank collect food for the hungry.

While Keith remains on medication for his seizures and had another dangerous drug reaction about a decade ago, Sunday speaks of the pain as if it was history. “He loves his group home,” she said. “He comes home every Sunday. That’s his favorite thing to do.”

She pulls out a photo of Keith standing next to an attractive young woman, an aide at the group home. “He loves the pretty girls,” she said with a knowing nod. “He always liked the pretty girls.”

Sunday is encouraged by the increasing awareness and attention autism is receiving these days. Always the optimist, she thinks stem cells may hold the key. But she worries that the focus is on the children.

For whatever reason, children with autism are beautiful, she said. But autism is a lifelong affliction, and there is little information on life expectancy for people like Keith.

“They’re not going to stay babies and little and young and easy to care for,” she said. “They’re going to become adults, and they’re going to get older and die. You know?”

Source: http://www.bloomingtonalternative.com/node/9899

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