Man With Tourette's Was Bullied, Abused and Institutionalized
Frank Bonifas was bullied, abused and institutionalized before he got help.
Nov. 23, 2012 — -- From the age of 7, Frank Bonifas has endured the most severe form of Tourette syndrome, and it started long before the medical community even had a name for the neurological disorder.
Doctors convinced his parents that he could control his tics and outbursts, which had him grunting, jerking and swearing with impunity. They blamed his mother for coddling him and, in 1968, as a young teen, they sent him to a psychiatric hospital for 18 months.
Bonifas, now 58 and living in Coldwater, Ohio, experienced assaults by school bullies and was forced to take high-dose medications that made him so listless one year, he lost two months of school.
Even in hospital wards, he was tortured by staff members who thought his outbursts were deliberate. He even had to fight with Social Security to get disability payments because Tourette syndrome was not listed in the medical journals.
"I resented all psychiatrists, psychologists and social workers," he said. "They had no idea what was wrong with me and blamed me, my mom, dad and sister for my problems."
Now, in a self-published memoir, "Fu-Fu-Fu Frank," he writes about his wrenching childhood and the determination he had to overcome the odds of living with a misunderstood disorder.
Bonifas prefaced his Thanksgiving day telephone interview with ABCNews.com in anticipation of his uncontrollable use of the "F word," punctuated with grunts and screams.
"I am not a violent person," he said. "I am a loving person who just has Tourette's."
Despite severe physical handicaps, Bonifas was able to write the book because of Marilyn Kanney, a former nurse and friend of his late mother who has loved and supported him since he was in high school. He calls her "a second mother."
"She took my thoughts and put them into sentences and wrote them into paragraphs and chapters," he said. "They were all my words, but she allowed me to make it a reality ... It took us 15 years to finish it."
Bonifas decided to go public with his story after friends encouraged him to write. His first goal was to educate others about Tourette syndrome. But the second was to be financially independent and get off disability assistance and Medicaid.
The turning point in his life was in 1973, when a husband-wife psychiatric team, Drs. Arthur and Elaine Shapiro of New York Hospital, gave his condition a name.
At 18, Bonifas was one of the first people in the United States to be diagnosed with Tourette syndrome.
"I taught my doctor everything he knows about Tourette," said Bonifas. "Dr. Shapiro said to me at the time, 'Frank, to your credit, you haven't blown your brains out by now.
"I put my trust in doctors and nurses for the first time in my life," he said.
According to the Tourette Syndrome Foundation, the disorder is defined by multiple motor and vocal tics lasting for more than one year. The verbal tics can include grunting, throat clearing, shouting and barking.
It was named for a French neuropsychiatrist, Gilles de la Tourette, who assessed the disorder in the late 1800s. But it wasn't until the 1970s that it was widely recognized in the U.S., where it was thought to be exceptionally rare.
In 1980, the condition was broadened to include milder cases of tics. Fewer than 10 percent of all patients swear or use socially inappropriate words, which makes Bonifas's condition so socially isolating.
The first symptoms, usually before the age of 18, are involuntary movements of the face, arms, limbs or trunk, such as kicking or stomping. They are frequent, repetitive and rapid. The patient cannot control these movements and they can involve the whole body.
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