How Can a Parent Figure Out if their Child has Misophonia?
As an individual with misophonia, a mother of an adult child with misophonia, and a coping skills counselor, I know how hard it is to find doctors who are familiar with this disorder. As many of you know, misophonia is not in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) or in the new International Classification of Diseases (ICD 11).
While most researchers have realized that misophonia is not a “mental disorder,” the DSM-5 still uses this archaic term. Despite the term “mental disorder,” we all know that the absence of misophonia in the manual makes our lives as mothers (and sufferers) more complicated. Unfortunately, before a “disorder” or “disease” gains entrance into these manuals, there is a very long and arduous process that often takes up to 10 years between revisions. Certainly, this keeps awareness, diagnosis, and treatment of misophonia under the radar and often leaves us without any insurance coverage.
In addition, we currently do not have a test for misophonia that researchers agree upon or that has gone through a validation process. This also takes a long time! Yet, it is still a time to be most hopeful! As some of you may have seen in the news, or heard through social media, funding for misophonia research has taken a turn for the better!
So, what can you do if you suspect your child has misophonia? How do you get a diagnosis? How do you get help?
Many of us turn to the internet for information. Let’s admit it—as much as we know that we cannot always find reliable information on the internet, many of us search for clues about misophonia. The temptation is often too hard to resist. I admit that I sometimes do this with health issues when someone in my family, or someone close to me, is experiencing a problem.
It is as if I am looking for something, anything, that will provide some reassurance. Then, before I know it, I have fallen into an abyss of conflicting information which only fuels my anxiety. Does this sound familiar to anyone? I am sure many parents agree that we often worry about our kids more than ourselves, and we worry about our kids even when they become adults. Yet, the internet can of course provide some accurate information if you know how to find it. Below are some suggestions in terms of how to use the internet to better understand misophonia:
• Don’t search when you are particularly upset or anxious. Take it from me—this is the worst time to try to make sense out of the World Wide Web of contradiction. Instead, wait until you are calmer and are not in a rush. Time is always of the essence with our children. Yet, if we slow down just a little bit, using some of the following methods can be very helpful!
• If you are familiar with academic literature, it is a good idea to start with a literature review. A literature review summarizes and discusses a specific body of research. Literature reviews are also assessed and edited by other researchers and clinicians in order to ensure objectivity.
• If you are unfamiliar with academic literature, you can still do a search! PubMed is a free source, and it is relatively user-friendly. By entering the search term (misophonia), you will see summaries (abstracts) of case studies, experimental studies, and literature reviews. While doing this, make sure that your search only spans approximately 5 years from the present date. This is important, because research can become outdated rather quickly, and you want to make sure you are seeing recent articles.
How can I use this information to get my child assessed and/or helped?
First, not all academics/researchers write in ways that are very difficult to understand. Yes, many do! However, you may be surprised to find that you will glean more information than you assumed you would. Therefore, even if you feel you haven’t absorbed all of the information that you wanted to, print the summaries (abstracts), and take them with you do your doctor.
Since we know that there are not many misophonia specialists, we often find ourselves in a state of utter frustration trying to get our children’s pediatricians, for example, to understand what we are talking about. Of course, you can ask your doctor if he or she has heard of misophonia. If the doctor says “no,” (or “I have heard of it but don’t believe in it”) you are armed with research. Once a doctor has research in hand, that doctor is less likely to tell you the disorder doesn’t exist.
You have every right to ask your pediatrician (or audiologist or counselor) to read through what you give them and even to research further. Naturally, not every doctor or clinician will say “yes.” However, I can tell you from personal experience that handing over some of these summaries (abstracts) of current research and/or a recent literature review feels better than breathlessly attempting to explain what you know about misophonia as the doctor stares at you as though you are crazy. Having been through this numerous times when my children were younger, I found this strategy saved me (and my child) a lot of disappointment and frustration. I was often rebuffed, but other times, I found doctors who were truly interested in finding out what this “new disorder” was. Sometimes, they took the time to read the research, and sometimes, they did not. Yet, it was always worth the attempt!
If, like many people, the thought of searching and printing out academic research gives you a blazing headache, there are some excellent free handouts specifically for doctors that you can access on the internet and bring with you.
How do you know which handouts are accurate and which ones are not?
• While there are a few floating around “out there,” it is a good idea to begin with the ones that are written by doctors (psychologists, audiologists, occupational therapists, etc.). There is a lot of great material written by journalists. However, when you are dealing with children and adolescents, the writer must also know about child development. Misophonia looks different in young children, adolescents, and adults. So, make sure you find a handout that is geared toward kids and teens and written by a doctor who has experience specifically with child development.
• Try to stay away from bringing doctors popular press articles. Of course, I have nothing against popular press articles, and I enjoy writing them myself. However, sifting through the “good” and the “bad” is even more difficult within the popular press relative to these other alternatives. Many journalists have meaningful intentions and truly want to understand misophonia and share accurate information. However, others do “sensationalize” this disorder.
Misophonia is particularly vulnerable to sensationalizing in the media, as I am sure many of you have seen.
What else can I do?
• I am elated to say that, relative to 4 years ago, more doctors, researchers, psychologists, etc., are reaching out to understand misophonia today. There is even a course on misophonia on the Drexel Continuing Education site. All doctors and clinicians need to get continuing education credits. Why not have this information on hand with you?
With new disorders, or unknown disorders, parents have to advocate for their child. We all know that.
However, we also have to advocate for the disorder.
One final thought: Trust your instincts! I always say: “the parents know their child the best.” If you are referred to an audiologist, counselor, or any other kind of clinician, and you feel uncomfortable or rebuffed in any way, move on.