Freudian Tics
Since the late 19th century there have been many different ideas about the origins and development of TS. These ideas reflected the wider scientific views that were prevalent at the time. Many physicians were convinced that TS was a degenerative disorder. Gilles de la Tourette was among those who promoted this hypothesis. He shaped his observations of patients to fit his theory.
There was also a strong prejudice in favor of the hereditary origins in all illnesses. In the case of TS, early theories about inherited disorders are proving to be correct, but other ideas including the linking of tics to mental instability are falling by the wayside, helping to sever the connection that some people still maintain between TS and mental illness.
Anecdotal connections have linked the onset of TS symptoms to rheumatic fever and other infectious diseases. Nineteenth and early 20th century clinicians made observations of connections but it has been up to contemporary scientists to prove or disprove the correlation. The possibility of a relationship with strep is still being postulated. Recent studies seem to suggest an immune system involvement in the exacerbation in a small number of patients.
Sigmund Freud was one of the great minds of the 20th century, and his impact on medicine continues today. Although he rarely addressed tics or tic-related disorders in his writings, the psychoanalytic approach to TS had a major impact on how doctors viewed their patients for most of the 20th century. Freud himself treated a woman with tics in 1888/89. He subscribed to the theory that her tics were the common symptoms of traumatic hysteria.
The psychoanalytic approach to tic disorders was actually formulated by Hungarian psychoanalyst, Sandor Ferenczi who theorized that tics were associated with repressed sexuality. Because Freud and his work on repressed sexuality was so much a part of post WWII America, this became the prevailing opinion of many doctors.
Looking at tics from a psychoanalytic perspective often put treatment of people with TS into the hands of analysts who sought to uncover patients' childhood trauma by hours of intense introspection. Good parents were sometimes blamed for their children's unexplained behaviors, and families felt needless shame.
Elaine Shapiro, PhD., Clinical Associate Professor of Psychology and her late husband Arthur Shapiro, M.D., Clinical Professor of Psychiatry (both at Mount Sinai School of Medicine in New York), pioneered the biological approach to TS treatment. They summed up the status quo in the medical community in the mid 1960s. "At that time, psychoanalysis was a very strong discipline in the country. It held sway at the medical schools for many years and, as far as we knew, no biological research was being done, nothing about the brain and neurotransmitters."
Patients and clinicians were faced with symptoms that waxed and waned, defying understanding. The changing nature of tics added to the confusion, but the prevailing wisdom continued to fit the unclassified symptoms into specific ideas of the psychoanalytic model. It was worse than trying to fit a square peg into a round hole. Parents of children with TS were told that childhood traumas or bad parenting were the sources of tics. TS already a cause of stress in families, was now blamed on the family itself. Parents did not know where to turn for help.
From a Psychiatric to a Neurological Approach
The next step in the evolution in the treatment came in the late 1960s and early 1970s with the advent of a neurological approach to TS and the use effective drug therapies. The Shapiros, and Dr. Bruun were at the forefront of this revolution, and the Tourette Syndrome Association, founded in 1972 was an important participant in the transformation.
Elaine Shapiro related a story of her husband's first TS patient: "He wasn't even aware of TS until he saw his first patient with it. She was a twenty-one-year-old girl from an Italian family who came in with her mother. Although she had been referred by a neurologist for psychiatric treatment, she refused to accept the psychological diagnosis. She knew it was something in her body. She asked 'can you stop?' She was working and had a certain amount of voluntary control of her tics. She didn't even disclose her coprolalia until after the first few interviews, Arthur looked up her symptoms in a neurology book, and told her about Tourette. She said, 'what a beautiful for a terrible illness!' She was the catalyst."
Dr. Bruun reconstructed the progression of her thinking about TS symptoms, recalling the very severe cases she treated at the time: "It seemed to me when I saw these patients that if the tics were symptoms of being crazy, then you'd have to postulate that these people were really, really crazy. And yet when you talked to them, you could see that they were normal people who had normal reactions. That's when I began to question the psychogenic sources (of tics)."
"The first patient I saw had a very severe case. He would jump up and scream and shriek. He was a very big man so it was scary. And yet he'd lived with it. He had a job in the trucking industry, and he was married. We treated him with Haldol and it changed his life. He said now he could go to church. That's what hooked me on the whole thing." Dr. Bruun continued, describing a man who was clearly sane and coping remarkably under difficult circumstances.
The more patients that Dr. Shapiro saw, the more convinced he became that it was biologically based. The successful treatment with drugs that were being used to treat schizophrenia further convinced Dr. Shapiro that it was a dopamine response. At this time, TSA was directing patients to Dr. Shapiro and Dr. Bruun for treatment. With each new case, the evidence for a neurological disorder grew, and the word was spreading about effective treatment with Haldol. It was finally time for serious biological studies of TS.
Elaine Shapiro acknowledges that many of the patients did indeed have psychological problems. But the problems came from reactions to tics---punishment, embarrassment, and rejection---rather than as symptoms of the disorder itself. Dr. Leckman credits TSA with easing the stigma that had caused so many of these problems in the past, and for educating both health care professionals and the public.
TS Right Now
The revolution in treatment that occurred in the early 1970s is undergoing subtle and not so subtle alterations. Haldol did not turn out to be the magic bullet it appeared to be at first. The side effects were onerous at the high doses that were prescribed in the 1970s, and even at lower doses it is not always the first choice of doctors and patients.
With growing public acceptance of TS some people prefer not to take medications at all. Dr. Leckman credits this to a better understanding of medications and their side effects. He discusses with his patients which symptoms they want most to address. For some people, life is much better with drug therapies, for others the medications aren't that necessary. There is also a shift in focus from TS -related tics toward addressing the symptoms of co-occurring disorders.
"We were so busy trying to prove that it was not psychiatric and that these people weren't crazy, we overlooked a lot of other symptoms." Said Dr. Bruun, outlining the change in perspective." Now I treat patients with an entirely different approach---helping them get accommodations in school, working with the whole person, and not focusing on tics alone."
Another significant change in the last thirty years is the time it takes individuals to receive a diagnosis. Now that pediatricians and elementary school teachers are more aware of TS, it is much more likely that a child----even a child with mild symptoms----will receive an evaluation within a year of the onset of symptoms. The process used to take years, and round after round of visits to specialists.
Dr. Bruun has also stopped telling people that their current symptoms will persist for a lifetime. "Only a small minority continues to have severe symptoms in adulthood. They were children when I met them and now they're middle-aged! Most of them are so much better that TS is not a problem at all. It's not a complete 'cure' but, in general, symptoms become so mild they'd never seek medical help for it now."
As to the actual origin of TS, Dr. Leckman reminds us that it's still a mystery. "There may be a multiplicity of causes that lead people along different paths toward a similar outcome. At the moment we think we are dealing with genetic factors acting in concert with early environmental (in utero) factors." There is still a great deal of research to be done
What's next? Gene therapy? A medication that can be taken only when tics are acute? Insight into an environmental link? The answers are on the way.
History' Lessons
It's often said that the past is prelude to the future. Taking a serious look at the history of TS gives us insight into where we've been and how far we've come. It also serves as a guide to the future.
"TS has baffled many great minds, and it continues to elude easy answers in both treatment and basic science," says Judit Ungar, TSA President. "But." She continues, "there is one unmistakable lesson to take away from this brief history of TS: it is that now, as then, people with TS are people and not a 'diagnosis' and that a positive attitude is a powerful tool that everyone can use."
Tourette Syndrome, page 1 | Tourette Syndrome, page 2
