Hyperarousal in Fragile X Syndrome – practice guidelines (awesome!)

Posted on July 29, 2011


www.fragilex.org/pdf/HyperarousalinFragileXSyndrome.pdf. this sounds like travis! It’s awesome that documents like this are being produces so parents or caregivers, teachers, doctors and other people who are involved in a person w/ Fragile X’s life can work together to provide the most supportive and healthy environment possible.  It can’t be easy to understand or deal with if it isn’t spelled out in a comprehensive way, like:

Hyperarousing conditions vary according to the particular sensitivities of the individual.  
This is why an evaluation of the environment should be made to determine what might
be causing the problem.  Generally, auditory and visual stimulation, environmental
complexity, unpredictability and eye contact are all stimuli that can trigger hyperarousal
in many people with fragile X syndrome.  Other triggers can include confrontational
encounters, being made the center of attention, being asked to produce novel answers
to new questions, and being asked to perform personally challenging task
And this:
What is the role of eye contact in hyperarousal?
Making eye contact is a social behavior that signals interest in, and attention to, another
person. Individuals with FXS tend to have social anxiety, and asking them to make eye
contact can be very arousing. It is preferable to let them initiate eye contact to the
degree that they are comfortable with it, and to avoid demanding it. The avoidance of
eye contact is one way that individuals are able to exert some self‐control over their
own state of arousal, and when eye contact is forced on them it deprives them of this
useful coping strategy.
I appreciate the framework of autonomy and control this document has put forth.  From a sociological
perspective individuals with any perceived disability or disadvantage are infantalized in a number of 
ways, one very important one, in my opinion, being denied the ability to have power and control over their
own lives.  But also the importance of empathy and support:
Hyperaroused individuals often recognize that they have lost control and may feel
scared and guilty about their reaction. It is therefore important to express an
understanding that they are not responsible for their emotional state, to offer support,
and to praise them for trying to manage their behavior.  Even non‐verbal children will
respond to such expressions of love, support and understanding, and be calmed as a
Now, I wonder if a parent or caregiver would have to first have explained why it's not this person's
fault for what they are experiencing for it to have a more beneficial effect.  Either way, super
positive.  I have seen my mom use these techniques described.. the joint compression and such.  She
gives Trav massages and such.  I don't know how much we praise him in those moments, though.  And of course
it only makes sense that he would calm and relax if we were sending him positive energy.  
I learned a lot of great information from this, because Travis suffers from social anxiety a lot.  And I am
thankful also for facebook (repeat after me: facebook is not my friend) information sharing capabilities so 
things like this can be shared en masse so easily.
Posted in: Fragile X