By Tanya Sockol
Potholes in the Road
The mother of Thomas, 9, was mortified as he threw himself to the floor of the holiday shop, kicking and screaming. There were bright-colored lights in every nook and cranny, people bustling about and so much noise that it was difficult to hear anyone speak. Other shoppers stopped and stared. Some shook their heads and others made comments under their breaths.
Thomas had been diagnosed with Tourette Syndrome a few months earlier. He’d begun to have tics when he was only a small child, though his family thought of them as curious quirks. As he got older it became clear that they were more than habits. Along with Tourette, Thomas was diagnosed by his NeuroPsych as having OCD and Sensory Processing Disorder; common comorbid conditions. As his tics became more frequent and more obvious, Thomas became angry. He would have outbursts and often wouldn’t take “no” for an answer. Sometimes, Thomas would kick walls or break things in their home. This behavior had become more frequent and intense over the last few months. His family was confused, embarassed and overwhelmed.
They weren’t alone. Studies show that, on average, around 75% of children with Tourette have behavioral issues, including anger, explosive outbursts, aggressive behaviors and rage, often brought on by things which seem completely out of proportion to their response. The more intense the reaction (and the severity and frequency of tics), the more likely the children are to have co-occurring OCD, ADHD and SPD and their tics are usually more severe. In many cases, this behavior was the very reason they visited a physician.
Fourteen-year-old Connor calls these outbursts, or meltdowns, potholes. “If you’re driving down the road and your car falls into a huge pothole, you’re going to damage it and it’s going to be difficult to get back out,” he said. “Potholes are the triggers that cause the meltdown. The good thing is that you can actually see them coming if you know what to look for and instead of driving through them, you can find ways around them.
He admits though, that this isn’t just about the driver. “My family learning how to help me see what might cause issues was important. We had to work together but eventually we were all able to find ourselves on the right track – one free of potholes. Through trial and error we learned to avoid things that would cause triggers.”
It Takes a Village
Studies have shown that family plays an important role when it comes to Tourette Syndrome. When there is a good understanding of the symptoms, support, a good routine and structure within a family, it can affect not just the behavior of the child with TS, it can affect their tics as well.
Theodore Goldsmith, M.A. author of the clinical dissertation, “Adolescent Tourette Syndrome, Interventions, and Families” said the important role family plays in Tourette cannot be overstated. “I think it’s crucial to understand that Tourette Syndrome impacts all members of the family, and in turn, families impact the severity and frequency of tics.” Since anger, frustration and sadness are natural reactions to the feeling of powerlessness when a loved one has tics, it’s important to remember that the youths themselves are feeling the same emotions. “This can be a recipe for conflict,” Goldsmith said. “We know there is a biological basis to tics and bad parenting doesn’t cause them, but emotional reactions can exacerbate them. I think the first step for parents is understanding the disorder. ”
Michael, a student in his early 20s who was diagnosed with Tourette as a teenager, explained that it made a huge impact when his family finally accepted that he couldn’t help his tics. “When I was initially diagnosed my dad was visibly upset and in tears,” he said. “He told me he didn’t think I was trying hard enough to stop the tics. My grandmother told me she was concerned I’d never get a job if I didn’t stop what I was doing and my brothers even laughed and joked about me. I know, looking back, that they were trying to ease my anxiety and frustration, but at the time it made me upset and angry.”
After his family received support from a group of other parents, as well as training from Michael’s physicians on his behaviors and what he was experiencing, their response to his behaviors and tics changed. “No one tries to stop my tics anymore and they’re extremely supportive. The anxiety melted away and that has dramatically reduced my symptoms. It’s also helped me accept that the tics are part of me, part of who I am and, honestly, I wouldn’t change them.”
Helen, a mom of two children with Tourette who herself was diagnosed as an adult, understands the diagnosis affects the entire family. “I absolutely agree that when family members do not believe or understand that tics aren’t purposeful and that some actions are a part of Tourette, it increases tics and other symptoms,” she said. “As much as I hate to say it, if therapy doesn’t involve the whole family, it won’t work.
Sympathy vs. Empathy
Because of the genetics of Tourette, there are often several family members in the same household who have TS or who may suffer from one of the comorbid conditions, such as OCD, which can complicate matters.
“Even my dad, who is super amazing, recently told me, “You need to do something about that noise you make’,” explained Megan, an adult with Tourette whose teenage son was diagnosed as a child. “It made me very self-conscious, which only made it worse.” Oddly, this only made her interactions with her son more fraught with conflict. “I tend to be less sympathetic than my husband. I find myself thinking that since I toughed it out, he can too. My husband has to occasionally remind me that my son can’t help it any more than I can.
Franklin, who has Tourette and has two children who were diagnosed when they were young, has seen the same dynamic play out within his own family. “I’ve discovered that my youngest is experiencing things that I never really did, or at least didn’t struggle with as much, and I’m not responding or helping like I would if I had experienced it,” he said. “I find myself thinking a lot about sympathy versus empathy and actively working to be better at trying to understand what they’re going through – even if it’s not what I did. Attending therapy as a family definitely helped reduce the conflict in our home. So much of what we know is from trial and error. I’m hoping, though, that through support and advocacy we can help others avoid the same pitfalls.”
Goldsmith explained: “Family therapy can help increase communication, strengthen relationships, and promote stability. While it helps for parents to be nonreactive to tics in the moment, it’s also crucial to provide emotional support through open communication and acceptance. Living with Tourette Syndrome is hard, and it can be very meaningful for youths to be able to share that experience without feeling judged.” He also said that those who treat Tourette Syndrome encourage parents to consider their own individual or couples therapy to process their emotions and strengthen their relationships as co-parents.
“We want to promote emotion regulation and stability throughout the family in order to create a supportive and stable environment.”
Approaching the Storms
“Before we knew he had Tourette,” said the mother of 12-year-old Leo, “we were always telling him to stop his tics. It just made him more anxious. He thought he was doing something wrong. That would lead to him feeling frustrated. Add in the issues with OCD, the difficulties in changing routine and his really severe sensory issues and it was a recipe for disaster. There was a moment when he actually hit and kicked me at a supermarket checkout and I was so mortified I wasn’t even able to respond. When I did, the way I handled it only made things much worse.”
After years of support, therapy and a growing knowledge of what led to Leo’s meltdowns – and learning to avoid those triggers – his angry outbursts are gone and his tics have become much less severe. Like many others, Leo’s family found a counselor who helped them all work together to be emotionally open and supportive through family therapy sessions, and also encouraged them to attend Parental Management Training (PMT).
Through helping parents of children with Tourette learn to identify the triggers, understand behaviors and promoting positive reinforcement, PMT has been shown to be incredibly effective, with one study showing a 33% reduction in disruptive behaviors after only a few months. PMT also helps parents understand that they are not to blame. Given the hereditary nature of Tourette and the misunderstanding of many of its symptoms, this is an often internalized concern that can be difficult for many parents to overcome.
‘Do Something Else’ Therapy
Family-based interventions are important and there are many different types of therapies to help those suffering with Tourette and its cooccurring conditions. Many individuals and families have found life changing results through Habit Reversal Therapy (HRT), Cognitive Behavioral Therapy (CBT) and Comprehensive Behavioral Therapy for Tics (CBIT). These therapies have been found to be extremely effective in the management of symptoms and studies show that they work quite well at reducing tic severity, helping with excoriation disorders (skin picking and hair pulling which are often found occurring in those with TS) and aiding in behaviors related to OCD.
HRT works to find effective ways to shift habits by diagnosing and retaining the old cue and reward, yet changing the routine. CBT is a form of treatment that focuses on examining the relationships between thoughts, feelings and behaviors to help a person change their way of thinking about what causes their symptoms and actively work on problem solving and goal setting in order to manage symptoms. CBIT teaches, as one doctor described it, not a “Stop It” therapy, but rather a “Do Something Else” therapy, training patients to find a different response to stimuli.
A study in the Journal of the American Medical Association in 2010 found that children and adolescents who completed a 10-week course of CBIT showed a decrease in tic severity that was only slightly less than that associated with antipsychotic medications, commonly used to treat Tourette Syndrome.
Yet, through all of this the greatest change in families can be seen when they begin to get support from others and begin to learn to advocate. “As kids get older and more comfortable, it can also be really empowering to allow them to be their own advocates and educate others about their tics,” said Goldsmith.
Advocacy, Awareness and Acceptance
The family of 13-year-old Dean found that once they began to accept his tics and behaviors, so did Dean. “His tics were so severe,” said his mom, “but I also believe that his understanding of it has helped tremendously. As we learned more about Tourette, we taught him more and he began to advocate for himself, not just at school and in public, but at home as well. He began letting us know when he felt a trigger was coming.”
The family of Maria, 16, had a similar experience. “My brother was diagnosed first at age seven. By the point when I was diagnosed, around six years later, my parents had a great understanding of Tourette. There were definite differences in how severe our tics were. I was trained as a youth advocate and I was surprised to learn that it made it easier to explain to my family members that Tourette is involuntary…telling me to stop or quiet down didn’t help at all. In fact that made it worse.”
One sibling, 24-year-old Beth, who’s two brothers have Tourette, said that growing up her home was always filled with stress. “When you’re a 15 or 16 year old with younger brothers who have Tourette, it just kind of is what it is. The hardest part about it was honestly the way that my parents handled (or rather didn’t handle) the situations. That wasn’t their fault; there just wasn’t a lot of understanding about what was happening.” Things changed when her family began to learn about triggers and how to properly respond to them. “We went from having constant meltdowns to my brothers being fantastic advocates for themselves and others. It’s shocking how much of a change there’s been through education.”
It is also important to not be too quick to blame medications or therapy for a temporary spike in tics as there are often other factors involved. “It requires a great deal of patience for families to cope with Tourette,” Goldsmith explained, “it can take years to find a treatment plan that works. The path to reducing tics is not linear, and there will be periods when they flare up and new tics develop, which can be discouraging. Unfortunately, kids have to live with judgment and stigma from the outside world, but support and understanding within the family can make a huge difference.”
“I think that by the time a child gets a diagnosis, especially when it’s Tourette Syndrome Plus, the family is already behind,” Helen related. “If I could do it over, I would tell myself to get into therapy for the whole family immediately and that you can’t just fix or change your child. The child may be the one with diagnosis, but the whole family is impacted – even if they don’t see it.”
“This is a process,” she said. “It’s not about a quick fix or a miracle cure. It’s about adaptation and management.”
Adolescent Tourette Syndrome, interventions, and families: A systemic perspective – Theodore Goldsmith, M.A.
*Some of the names have been changed to protect the identity of those who contributed to this post
For more information on Tourette Syndrome, other Tic Disorders & Their Associated Conditions please contact the Tourette Alliance at TouretteAlliance@gmail.com