Most children who come to see me have a combination of developmental delays, communication challenges, and symptoms of anxiety, resulting in frequent tantrums.
It’s common for parents to share details about their daily struggles; the familiar patterns are that their children often have meltdowns during transitions, aggressive behaviors during tantrums, or panic-like symptoms in new or unexpected situations.
Over time, parents begin to worry about how they’ll manage these behaviors or what others will say or think. I often see a pattern develop where parents can anticipate when difficult behaviors will emerge for their children, and they try many different strategies to support their children, but sometimes they feel that what they’re doing is not helpful.
Why Do These Behaviors Occur in Fragile X Syndrome?
Let’s begin by talking about the neurobiology of Fragile X syndrome (FXS).
Based on brain studies, we now know that the brains are wired differently for individuals who have Fragile X syndrome, which leads to a situation of hyperarousal of the sympathetic nervous system. People with Fragile X syndrome tend to have trouble getting used to different sensory experiences.
For example, when they experience loud noises, crowded places, unexpected movement, visually distracting places, or strong smells, it can be overwhelming. Denser neural connections within a part of the brain called the amygdala — the integrative center for emotions and emotional behavior — also increase the likelihood of hyperarousal and anxiety.
Children with Fragile X syndrome tend to have maladaptive behaviors such as tantrums, screaming, trying to flee a situation, or panic, when their brains and bodies move into fear (fight or flight) following a triggering event. The hyperarousal leads to a disorganized state with decreased self-regulation, decreased access to language and communication, and reduced attention. Once this process begins, it can be hard to avoid an explosive outburst.
Strategies to Manage Anxiety
We try to use strategies that focus on preventing the escalation of anxiety and maladaptive behaviors by planning ahead and using strategies to keep children (and parents) remain calm.
1. Increase Structure and Predictability
We increase structure and predictability by creating practiced routines supported with visuals — e.g., pictures, visual schedules, checklists — to show a sequence of events.
There are a variety of apps that work well for this. One I like is called Choiceworks↗. It allows you to set up a visual schedule using their pictures or importing your own photos, so it’s easy to individualize. Additionally, you can check pictures off as you go so that it functions like a checklist. It can be used to show a sequence of events or to show steps to a task.
One family I know is using it to help with anxiety around going to the dentist. They set up a plan with their dentist to make repeated visits (one per month) so the child can follow the sequence while getting comfortable with the setting.
For this child, the hardest part is the dental exam. Before they get to that step, they’ll use the checklist to practice all the other steps, including a trip to the “prize box.” After he’s more comfortable, they can add in steps like Dentist will look into open mouth, Dentist will count teeth, and Dentist will brush teeth so he can learn the longer sequence without experiencing panic.
Similar pictures and steps can be used to practice teeth brushing or other self-help skills. (Also see Your Child’s Visit to the Dentist.)
2. Use Simpler Language
We decrease the length and complexity of the language we use with children with Fragile X syndrome. When children are feeling worried or experiencing anxiety, it’s harder for them to understand complex language. Unfortunately, in moments of frustration, parents sometimes talk more and give more directions, which tends to add to overstimulation and can intensify the likelihood of maladaptive behavior.
Instead, it’s helpful to use short phrases that are calming and have clear directives embedded within them. By relying on short phrases, children can quickly understand their meaning. By using predictable, practiced phrases, children know what to expect.
3. Teach Calming Routines
When practiced ahead of time, calming routines can interrupt the escalation of anxiety and overstimulation. Examples might be taking deep breaths, counting to five or 10, listening to a calming song, looking at a favorite picture or book, using fidget toys or stress balls, doing mindfulness exercises, holding yoga poses, pouring beans or rice, or playing in kinetic sand. (See: Kinetic Sand Recipe↗)
These are all strategies that when practiced in non-stressful situations can bring greater calmness during points of increasing anxiety. It can be very helpful to offer a familiar activity that has a calming influence and interrupt perseverative focus that can develop as anxiety.