Many of you know the significant struggles that I faced growing up with severe hyperacusis. The doctors did not believe that I experienced physical pain from sounds, and implemented various desentization plans that increased my pain levels. My family was given inaccurate information by doctors and therapists, that hyperacusis was a psychological condition, and thus my family supported and implemented the sound exposure treatment plans. The school system considered my hyperacusis to be an emotional disorder, took the approach of trying to desentizing me to noises at school, and refused to allow me to continue with 1:1 instruction in a separate building. I didn’t know anyone else with hyperacusis, it felt like I was fighting against the doctors, therapists, school system, and sometimes even my own family to get them to believe me and stop implementing harmful treatment plans. Not knowing anyone else with hyperacusis meant that my mom had no one else to seek advice or discuss my situation with other than doctors and therapists (the so-called experts as my mom now calls them) who did not have accurate information about hyperacusis. At the time the non profit organization Hyperacusis Research was just getting off the ground, they hadn’t published any articles, research papers, or made any breakthroughs in uncovering the physical mechanisms behind hyperacusis yet. When my family, school staff, doctors or therapists went to research hyperacusis online they only found information confirming their belief that it was a psychological condition that could be treated with sound exposure and behavioral therapies.
In the facebook group Hyperacusis Research and Support, whenever I see a parent or caregiver posts about their child with hyperacusis I always send them a message to try to get in contact with them. With the parents that are comfortable with it, I ask them about their child’s symptoms, severity, limitations, etc . I also always offer to set up a virtual meeting with them and or their children. Sharing my story, and the things I went through growing up with hyperacusis, has proven to be an effective tool steering parents away from sound exposure therapies and recognizing hyperacusis is a physical condition. Another important thing I do is to make sure that parents are up to date on the latest research from Hyperacusis Research, I send them the articles that the organization has published about noise induced setbacks and physical mechanisms. Via facebook messenger I have created a small group for parents of children with hyperacusis to be able to communicate with each other.
One of my goals with the Hyperacusis Awareness movement is start a virtual program special to help hyperacusis youth and their caregivers. Currently I have an active instagram group for teens I have met with hyperacusis to enable them to connect with each other. I am working on trying to expand the size of the parents group I started on messenger, which I plan to also use as a way to reach younger children who are not on social media. There are private secure platforms that people can: chat with each other, make and post videos and photos, write posts and play games that could be used to start a freestyle online program for children who have hyperacusis.
Hyperacusis Awareness: Sound Sensitivity Treatment 