My Tic Disorder is More Than A Researcher Sees

Emphasis on tic suppression rather than patients’ comfort in new study suggests troubling priorities.

Ticcing in public can be awkward. For a long time, whenever I was away from home, I suppressed my tics to avoid stares and questions. It was exhausting, and some days I would leave the office crying in pain.

After I was diagnosed with provisional tic disorder, I started reading about the Neurodiversity Movement, and I was inspired to let my tic flag fly. My quality of life dramatically improved. My tics no longer brought me to tears.

Because of my experience, I was intrigued when I started seeing articles about a study of tic suppression in children. Unfortunately, the findings and comments from the researchers left me concerned– and also brought to mind a controversial therapy.

About the Study

Last week, The Journal of Child Neurology published the results of a study on tic suppression in children with recent on-set tics. The purpose of the study was to determine if the ability to voluntarily suppress tics within the first months of onset was predictive of tic severity at the one-year mark. Researchers found that this ability did correlate with reduced tic severity.

Prior to this study, research suggested that tics would significantly decrease or disappear in most children after one year. However, when the children in this study were left alone, all of the children in the follow-up evaluation exhibited tics, even those who had not when the evaluator was in the room. This discovery led the researchers to conclude that tics are not absent after one year, but rather that children learn to more effectively suppress them. 

So What’s Wrong With Tic Suppression?

Inherently, there is nothing wrong with using tic suppression to manage tic disorders or Tourette syndrome. Some tics can be painful, interfere with activities, or inflict unintentional harm on others. For example, I can experience joint pain after rapidly extending my arm. In a crowded store, without suppressing my tics, I may hit other customers or knock down merchandise. The skill of tic suppression can be helpful in those situations and allow me to participate in activities with less interference.

That said, there are downsides to tic suppression. My personal experience with tic suppression has been that it can be uncomfortable or even painful. Sometimes it leads to a more pronounced expression of the tic later on. Tic suppression, for me, is mentally and physically draining. While there seems to be some debate on this phenomenon amongst clinicians, at least one study found that over 90% of its sample “felt uncomfortable or incomplete when they suppressed tics and needed concentration and extra effort to suppress them.” 

Is Tic Suppression for Me or Society?

If researchers were studying tic suppression to help children suppress tics when they wanted, I would feel better about the implications of the research. However, that does not seem to be the case. 

First, the study does not ask the children to suppress only painful or debilitating tics, but to suppress all tics. During the suppression period, the children were not asked to perform a task or asked about their comfort levels. Tic-free intervals were considered a success. Rewards were offered for successful tic suppression in part of the session, intentionally or unintentionally encouraging the child to continue suppression regardless of their discomfort or the level of concentration involved. 

One of the authors of the study, Dr. Kevin Black, states in a Washington University news release that “we might improve quality of life for those who otherwise may go on to develop a chronic tic disorder.” While a noble goal, I’m struggling to see how this study supports that mission given the potential negatives of tic suppression and the fact that the study did not measure the children’s satisfaction with the techniques.

Black says that “most can suppress [tics] for a short period of time, but at some point, it’s going to come out.” He then says that understanding why some children are able to control these tics may help others “avoid chronic tic disorders such as Tourette syndrome.” These two statements seem contradictory. If the tics inevitably manifest despite suppression, how can it prevent chronic tic disorders? The only way these statements make sense is if Dr. Black equates an absence of tics in the presence of other people with the absence of a disorder.

This Study Reminds Me of Something…

Applied behavior analysis (ABA) focuses on changing behaviors in its subjects through a system of rewards and consequences. It is commonly used to treat autism, and if you listen to many autistic adults, it is absolutely terrifying.

I do not think these researchers are hoping to create a version of ABA to treat tic disorders, but I worry that the influence of these findings may push behavioral therapies like Comprehensive Behavioral Intervention for Tics (CBIT) closer to an ABA-like way of thinking.

Because of ABA’s reliance on reinforcement and punishment, I have concerns that the findings of this study will lead to a more prominent role for rewards in future behavioral therapies for tics. This system of rewarding tic suppression encourages participants to fight their bodies in order to get approval. Many children with tic disorders also have ADHD, which can cause increased sensitivity to failure. For children who have difficulty earning the reward, this combination could negatively affect self-esteem and cause increased pressure to succeed in tic suppression.

In ABA, the ultimate success is for the autistic patient to become “indistinguishable from their peers.” In other words, others will not be able to tell they have autism. There are echoes of this mindset in Dr. Black’s statements. The suppression of tics does not necessarily mean discomfort and premonitory urges are gone; it just means others can’t see our condition. In autistic children, the absence of behaviors like stimming and the presence of behaviors like eye contact do not mean the child is no longer autistic; it just means others can no longer see their autism.

This definition of success can be harmful. It indicates that the comfort of others should be prioritized over our own, that being different is bad. President and co-founder of the Autistic Self Advocacy Network Ari Ne’eman describes ABA as teaching children “that the way they act, the way they move is fundamentally wrong.” Won’t teaching children to suppress their tics have a similar effect?

The results of the study indicate that many of the children have already internalized this way of thinking. In the presence of others, they practice tic suppression, but when they think they are alone, they express their tics. If children suppressed tics for themselves rather than for the approval of others, I would expect them to suppress tics while alone, too.

These similarities are not an indictment of the study or its conclusions, but they are red flags. The research presented in the Journal of Child Neurology is part of an ongoing study, and I will continue to follow the researchers’ work. For now, I will express my concerns and hope that future findings will focus more on the person and less on the tics.

1 Comments

Leave a Comment