The Impact of the September 11, 2001 Disaster on People with Tourette Syndrome and Associated Disorders

Cathy L. Budman, M.D., Lori Feirman-Rockmore, Psy.D., Ruth D. Bruun, M.D.

Unfortunately, traumatic life events are fairly common in childhood and may increase in frequency with age. Research suggests that 14 to 43% of children experience at least one traumatic event in their lifetimes. However, the devastating terrorists' attacks that took place on September 11, 2001 in the United States represent for many Americans a new and uniquely horrifying type of trauma.

As clinicians, we have reflected upon this terrible event in terms of how it may impact on people with Tourette Syndrome (TS) and its associated disorders. While a complete discussion of all potential clinical implications for TS is beyond the scope of this article, we hope to provide you with a brief overview of some of the types of effects that may occur and what treatments are available. We would also like to extend our support to the collective TS Community who in direct and indirect ways were profoundly affected by the terrible events that took place on September 11, 2001.

The September 11, 2001 disaster can be expected to have a multitude of immediate, short-term, and long-term impacts that will vary with developmental age, degree of direct exposure to the catastrophic event, and prior life circumstances and stresses. There are several tiers of trauma victims, ranging from those who experienced maximum exposure to the disaster, relatives and friends of these primary victims, rescue and recovery personnel, members of the extended NY and Washington D.C. communities, persons with previous traumatic experiences, and persons with conditions that render them more vulnerable to traumatic stress (e.g. such as a pre-existing anxiety disorder). There are also secondary tiers of trauma victims that may include those who will suffer unemployment, racial, cultural or religious prejudice, financial stress, or relocation associated with the broader consequences of this disaster.

For many people with TS, daily life is characterized by a state of hyperarousal and stress reactivity described by the late Dr. Donald Cohen, M.D. and Dr. James Leckman, M.D. from the Yale Child Study Center as “The Self Under Siege”. The experience of TS can be compared to living with an internal terrorist who threatens to disrupt movements, behavior and thoughts at any time without notice, causing chaos and distress. Drs. Cohen and Leckman described this state as “overwhelmed from within by attacking forces that were within oneself and at the same time outside of it” and liken day-to-day existence for some people with TS as “engaged in combat”. The struggle against unwanted tics, intrusive thoughts and dysregulated behaviors can be exhausting, demoralizing and overwhelming. Bullying, social discrimination and mounting frustrations may in themselves pose intermittent, often unpredictable assaults on the self, undermining even the strongest efforts of resistance. Furthermore, many people with TS also suffer from comorbid anxiety disorders such as Obsessive Compulsive Disorder (OCD), separation anxiety disorder, panic attacks, generalized anxiety disorder, post-traumatic stress disorder, and phobias. Consequently, many people with TS may be particularly vulnerable to the exacerbating impacts of stress, loss, and trauma associated with the September 11, 2001 disaster.

Acute worsening of tics and anxiety symptoms including OCD, separation anxiety, phobias, and Acute Stress Disorder (ASD) (characterized by intense anxiety, insomnia, nightmares or flashbacks of the trauma, poor concentration, irritability, numbness, anger outbursts, hypervigilence, avoidance and problems with daily functioning) were among the most commonly reported problems by many children and adults with TS immediately following this catastrophe. In most cases, these acute reaction symptoms have subsided with time.

Now that we have passed the one-month anniversary of the September 11, 2001 disaster, certain children and adults may continue to experience trauma-related symptoms that may actually reach threshold severity for a diagnosis of Post-Traumatic Stress Disorder (PTSD). Such risk is of particular concern in this dramatic case of terrorism where the events were sudden and unpredictable, possibly long-lasting and likely to reoccur, resulted in massive and immediate loss of life, and involved both real and threatened violence. Unfortunately, exposure to the nearly continuous graphic media coverage of this horrible event served to re-traumatize vulnerable individuals again and again. Persons with a prior history of trauma, social or physical isolation, underdeveloped problem solving skills, low self-esteem, low stress tolerance, pessimistic thought patterns, depression and baseline autonomic reactivity are believed to be particularly vulnerable to developing PTSD. Hence some people with TS are at increased risk for this complication of the September 11, 2001 disaster. Affected persons may complain of symptoms ranging from inability to concentrate, nightmares and insomnia, headaches, stomachaches, flashbacks, dissociative experiences, withdrawal, excessive guilt or anger, emotional numbing and difficulties responding normally to usual life situations. Such persons are at risk for becoming severely depressed. Some may even begin to abuse drugs or alcohol in an attempt to alleviate overwhelmingly painful feelings. People with such symptoms should seek help from a psychiatrist or other mental health professional. Both psychotherapies and psychotropic medication interventions can be helpful.

During this second phase of the disaster response, we have also encountered many adults with TS complaining of a persistent worsening of obsessive compulsive symptoms (e.g. worsening of aggressive obsessions, contamination fears, catastrophic obsessions), other anxiety problems especially specific travel-related phobias (e.g. fear of flying, traveling over bridges or in tunnels), and depression. These symptoms too require prompt intervention with a psychiatrist and/or other mental health care professional. Early behavioral intervention with or without concomitant medication may prevent further deterioration in function and avoidance. Some children with TS are showing symptoms of increased aggression, somatic complaints, and worsened sleep problems. Interestingly, however, many of the younger children with TS who were not directly traumatized appear to be coping quite well, although some adolescents seem to be experiencing a similar worsening of OCD and phobia symptoms to adults with TS. Increased irritability, changes in academic performance, increased attention deficit disorder symptoms, increased obsessions about violence and death, and oppositional behaviors may also be responses to this disaster for some adolescents with TS.

It is difficult to fully anticipate at this time what future consequences people with TS may experience. In a time where concerns may be realistic about bioterrorism, chemical or nuclear warfare, and threats of recurrent attacks on U.S. soil, the nagging “what if” fears typically associated with OCD are unfortunately reinforced. Behavioral treatment interventions will need to take these new “realities” into account while distinguishing between unrealistic and appropriate fear responses may become more difficult for clinicians. Interventions should always be geared to the appropriate developmental stage of maturity and needs of the child, adolescent or adult. As general guidelines, maintaining a predictable routine and structure will help alleviate some of the worsened anxiety symptoms experienced by some people with TS. Avoiding any unnecessary major life changes is particularly crucial during this vulnerable period.

It is also very important to recognize that the majority of people with and without TS will not develop long-term psychological problems or worsened symptoms from this disaster. Talking about the trauma with family and friends, and/or individual, family, or group therapy can be very helpful. People with TS often learn to struggle with and overcome adversity and to cope with prejudice and injustice. Perhaps exploring how people with TS succeed in their struggle against their “terrorism within” will help all of us learn better coping mechanisms for dealing with the now chronic threat of external terrorism.

Let us work together to confront the many challenges that await us and not allow our differences in perspectives, backgrounds, and circumstances obscure our shared humanity. If you or a loved one needs help for impairing symptoms you may find any one of the resources provided by the TSA on this website valuable. If you need urgent help, you must call your personal health care provider or seek evaluation at the closest emergency room immediately.

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