Rutgers graduate students learn about Tourette Syndrome for 12th straight year

Earlier this month, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) presented to incoming graduate students at Rutgers University’s Graduate School of Applied and Professional Psychology (GSAPP) for the 12th straight year!

Led by Dr. Robert Zambrano and NJCTS Youth Advocate Tommy Licato, this required lecture is an important part of NJCTS’ relationship with Rutgers and a starting point for students who might be interested in our TS practicum program. The bottom line? Every doctoral candidate at Rutgers University for the past 12 years has heard a lecture from a doctor, a psychologist, a family with Tourette Syndrome and NJCTS!

“Tourette Syndrome: Coping With Difference” — Perspectives

The following is part 5 of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio.

Read part 1 here.
Read part 2 here.
Read part 3 here.
Read part 4 here.

Two women who shared their children’s stories with me told me that their husbands had not been diagnosed until their children had been diagnosed. Karen’s husband was 42 at diagnosis and Tanya’s husband was 38. I wondered about how both husbands dealt with this disorder growing up, not realizing that there was a name for their behaviors.

Karen didn’t have much of her husband’s history to share, but Tanya’s husband had been misdiagnosed since he was 4 years old. For many years he was treated for seizures until two of their five children were diagnosed with TS. Her two sons and her husband William were all diagnosed within just a few years of one another, with not only TS but Asperger’s as well (Tanya Lackey, personal communication, November 2012).

It was quite difficult for me to gain a better picture of what the historical implications were for the older individuals with Tourette. Lorenzo had been the only one to share his full story with me. Three other adults, much older than Lorenzo and in their 70s, were only willing to give me their symptoms and didn’t want to share much else. I imagine their stories were much more painful than the rest of the stories.

When someone is ridiculed for a condition that is beyond their control, it’s sad and unacceptable. When someone is ridiculed during a time that such conditions were treated as an atrocity and a “sickness”, it moves beyond sad…it’s deplorable.

The educational perspective is merely an extension of the historical perspective. Before TS was first introduced as a medical condition, what were the implications for students who displayed the symptoms and tics during instruction? What will the educational implications for Jacob be? Continue reading

“Tourette Syndrome: Coping With Difference” — History

The following is part 4 of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio.

Read part 1 here.
Read part 2 here.
Read part 3 here.

My first interdisciplinary perspective is historical in premise but follows, not only the history of where TS originated, but the social aspects that have hindered upon the understanding of TS.

Martinello’s article The Case of the Carousel describes her inquiry into the Brackenridge Park carousel in San Antonio, Texas. Martinello begins her inquiry after one particular pony on the carousel caught her eye. She could tell by its appearance that it had not been a favorite pick. “I wondered about all those ponies, but especially this unwanted one.” (Martinello).

My own inquiry into TS had started from that one area of TS that had not seemed of particular interest in the information I had previously found. I have no doubt that individuals affected by TS have often wondered how they relate to one another, but I wondered how much research has been done by “outsiders” that has focused on the individual differences in demeanor, emotional state and coping skills.

Like Martinello, the books on the library shelf didn’t give me much of a head start. I knew that being an “outsider” myself, I would have to find others who will lead me into the right direction. Martinello was able to gain ground for her inquiry once she spoke to the operator of the carousel and was able to find out the company that made the carousel.

I hadn’t initially intended to go for the historical perspective, but in an individual by the name of Lorenzo changed my mind. Like Brad Cohen, Lorenzo had grown up not knowing that it was Tourette Syndrome that had inflicted him with those movements and sounds. He was in his 30s before he was officially diagnosed with Tourette Syndrome. Continue reading

“Tourette Syndrome: Coping With Difference” — Methods of inquiry

The following is part 3 of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio. Read part 1 here. Read part 2 here.

After scouring the many methods used for inquiry, my first method is qualitative and goes back to the interviews. Qualitative inquiry is defined by Denzin and Lincoln as a civic, participatory, collaborative project; a project that joins the researcher with the researched in an on-going moral dialogue (Gergen, 2002).

Through the interviews, I was able to stay connected to my resources as we worked together to complete this inquiry. The interviews were my primary source for each perspective. Martinello kick-started her research on carousel horses after finding people that were willing to share their knowledge.

I knew this was the only way to find out the information I was looking for, and I used bits of this methodology for all of my perspectives. I was drawn to the historical perspective after I met a gentleman in his 50s who had not received a Tourette diagnosis until his was in his late 30s. I wandered why it took so long for doctors to give his tics a name and how his life had been impacted by the lack of help.

The educational perspective comes from my talks with Jacob and our development of the “Embracing Difference” campaign that calls for the education of TS. The film, I Have Tourettes but Tourettes Doesn’t Have Me, showed a group of children who go misunderstood by their teachers and classmates. I wondered about inclusion and how Jacob would fare if his tics were so severe that his peers could not ignore them.

For the psychological perspective I had to seek out others who could relate to Jacob and those “inner” battles with tics. How do they cope and how will their stories help us find our own coping system? Continue reading

Oh What A Tangled (Neural) Web We Weave: A first-person account of Tourette Syndrome (part 1, background)

EDITOR’S NOTE: This multipart series first appeared in the March 2010 edition of the Journal of Clinical Psychology Practice and also can be found on Life’s A Twitch, a website run by Canadian psychologist Dr. B. Duncan McKinlay.

I am a 35-year-old Caucasian male diagnosed with Tourette Syndrome (TS), Obsessive-Compulsive Disorder (OCD) and Attention-Deficit/Hyperactivity Disorder (ADHD). I first displayed tics around age 7 and was diagnosed at age 19.

As a youth my symptoms were severe, misperceived and coped with predominantly through camouflage and suppression. My symptoms persisted into adulthood without attenuation. My current Yale Global Tic Severity Scale score is 44. My tics are treated behaviourally, utilizing techniques that I first attempted at age 20.

I first catalogued my experiences with TS — relating my observations to the content of my studies – in my undergraduate years. These notes evolved into presentations, newsletter columns, magazine articles and online blogging.

During my graduate work I began attending international research symposia and I was active in various support and advocacy organizations. I completed my applied Masters and Doctoral dissertations in the area of TS and associated disorders. My Masters was a social psychological study and focused on the impact of attitude as a function of coping success.

My dissertation united the existing body of neuroanatomical knowledge with behavioural learning principles to develop a comprehensive model of tic formation. I am also the creator of the popular website Life’s A Twitch and have authored the book “Nix Your Tics! Eliminate Unwated Tic Symptoms: A How-To Guide For Young People.”

Currently, I am a registered psychologist in Ontario, Canada, providing highly specialized tertiary care to children and adolescents with complex TS since 2004 via the “Brake Shop”, a clinic model of my conception.

This article is a culmination of each role that I carry. My account blends 15 years of professional education and experience with almost 30 years of being personally touched by symptoms of TS, OCD and ADHD. This first-hand report highlights how learning likely influences the appearance and treatment of TS and it concludes with a glimpse into living with multiple difficulties in self-regulation.