At the 2014 International Fragile X Conference, several of our top professionals were fortunate to have the opportunity to work with a large group of individuals affected by Fragile X syndrome (FXS). For the first time, the NFXF offered older adolescents and young adults the opportunity to participate in the conference in a seres of sessions especially designed for them. Most struggled with educational settings in the past so it was truly an amazing experience to see this group participate with such high levels of concentration and for extended periods of time. They gave thoughtful presentations, asked appropriate questions and responded with great empathy and humor.
Over 40 male and female advocates with FXS, ages 17 and older, participated in this workshop, which discussed anxiety and how to manage it. Some described their own struggles and included triggers and responses. When people experience anxiety or stress, they often experience physical symptoms, which may include many of the symptoms described by the advocates.
During times of stress, transition or frustration, the sympathetic nervous system response is activated by the brain, and the body responds by undergoing physical change to meet the “Fear, Fight or Flight” demand. The neurobiology of FXS includes an increase in connections within a part of the brain called the amygdala, which is part of the limbic system involved in emotional responses. This means that most advocates are at much greater risk for hyperarousal and experience an increase in symptoms of anxiety.
At the start of the workshop, the advocates were given color-coded slips of paper, divided into three categories:
- Antecedents/Triggers (Pink)
- Physical Symptoms (Green)
- Behaviors (Yellow)
The pre-typed options allowed those who were less verbal, or less able to write, the ability to choose which best applied to them. As each advocate chose those features that best described their struggle with anxiety, we opened the discussion. Below are lists in order of frequency and provided the catalyst for further discussion.
Things that may trigger anxiety and behaviors includes being rushed, unexpected changes, public speaking, meeting people/making social contacts, new routine, change in plans, making decisions, noisy or crying kids, loud arguments, loud noises, answering phone calls, starting chores or jobs, driving, flying, navigating and finding places, leaving the house, failing and/or making a mistake.
Physical symptoms of anxiety includes sweating, fast heart rate, sleeping more/less, headaches, stomach problems, flushed faces and ears, gagging, trouble swallowing, itching, muscle cramps, trouble breathing, tightening of chest or feeling pressure in the chest.
Anxious individuals may exhibit the following behaviors: avoidance, crankiness, irritability, texting or fiddling with phone, obsessing, repeating a phrase, aggression/self-abuse, hair twirling, lying, biting nails, scratching, rubbing ears, picking skin, changing subject, pacing/crying, hitting, fidgeting, laughing at inappropriate times or swearing.
As the session continued, the advocates received information about the use of medication to treat anxiety symptoms. There are many medications that are very effective in managing the symptoms of anxiety. These have the best effect when used together with behavior management strategies.
Some key ideas about anxiety responses were reviewed, and then the advocates had an opportunity to practice relaxation exercises. In order to assist the process, a video was played where a self-advocate provided a model of using a visual flip chart to practice calming down. Then, the same flip chart book was used to assist the advocates in practicing the skills. The presenters walked around the room to facilitate the correct practice of the skills. Everyone seemed to benefit from having an opportunity to practice deep breathing techniques, interspersed with some Progressive Muscle Relaxation techniques. These two techniques can be very effective in managing symptoms of stress and anxiety.
Because breathing exercises and Progressive Muscle Relaxation exercises can be very helpful for calming the body and the mind, the advocates were able to see how agitation and “melt downs” could be avoided. These strategies are most helpful when they have been practiced regularly by an individual before they are needed. It is helpful to practice the strategies when an individual is calm.
There were other visual tools that were used during the workshop to help the advocates rate the intensity of their feelings. These are referred to as “Feeling Thermometers,” which can be used to rate the intensity of any feeling state (happy, sad, mad, scared, worried, etc). The Incredible 5-Point-Scale (Kari Dunn Buron, 2012) was used to provide a visual model for a feeling thermometer, and one of Buron’s worksheets was used to help the advocates understand how taking a “feeling temperature” could help them decide what to do.
Using the Incredible 5 Point Scale, the advocates were able to identify when they were at a five (high rates of worry/anxiety) and how they could “try to keep quiet, put on the brakes, keep calm and carry on and call the doctor.” They generated strategies to accompany the scale going from five to one. When they were at a four, they described it being time to “walk away, use deep belly breathing and put their head down.” When they were at a three, they found it helpful to “listen to music, call parents/friends, stretch or pet a dog.”
When at a two, the advocates could “rest, listen to a happy song, take a ride in a car.” When at a one, the advocates could eat their favorite food, sleep, watch TV, swim or take a walk.
Following the exercises, the advocates also had an opportunity to review important friendship and relationship information provided by a genetic counselor. This section of the workshop really provided the presenters with insight into the importance of bringing advocates together to hear about each other’s experiences and concerns. It was clear that the majority of the participants have limited opportunities to meet with other advocates with FXS on a regular basis, and they really benefited from sharing stories and insights into what works for them.
Understanding that there is a neurobiological reason for their struggles with anxiety seemed to provide them with the support they needed to press on. The camaraderie of the group met a need many had never addressed, to share an experience that was driven by their common etiology. This reaction was a surprise to everyone.
In future workshops, the presenters are interested in expanding the scope of the format. The advocates asked that we explore relationships related not only to friendships, but dating and fostering a long-term relationship with a partner. We hope to foster that type of discussion and provide more resources to support their requests. We are deeply grateful for the opportunity to pilot this session and thank each of the participants for sharing their stories with us.