Friday, January 20, 2017

8 Myths about Selective Mutism

My son was diagnosed with Selective Mutism (SM), three and a half years ago in 2013, at the age of 3.  We worked on a cognitive behavioral therapy (CBT) treatment plan with a doctor who specializes in SM. These are the top, most frustrating myths I have encountered through our journey.  These are my opinions as a mom who has read extensively about the subject and helped her son become verbal through CBT, hard work and never giving up hope.  My goal is to raise awareness, clear up misunderstandings and educate parents to get early treatment for SM.  I am not a doctor or health professional and know others may have different experiences and opinions than my own; however as a mom who has helped her son become verbal in almost all settings, including the classroom, I feel that I have a good understanding of the subject.  

1. Selective mutism is just an intense shyness. 


"He's just shy."  "So and so was quiet like him and he turned out fine" "He'll outgrow it." These types of comments from family members and friends can make someone with SM or someone parenting a child with SM want to explode with anger and frustration.  Sure, selective mutism can look like shyness on the surface, but there is a big difference between the two.  According to the Selective Mutism Association, selective mutism is defined as "A childhood anxiety disorder characterized by a child's or adolescents' inability to speak in one or more social settings (ex. school, public places, etc) despite being able to speak comfortably in others setting (ex. at home with family)."


When someone is shy, they tend to warm up to new situations like school and classmates over time.  They are able to tell people their needs when truly necessary.  A person with SM can actually feel very comfortable in a situation and truly want to talk, but still be unable to vocalize anything because they are paralyzed by severe anxiety.


2. Selective mutism is on the autism spectrum


I can see why someone who has little to no knowledge about selective mutism could wrongly jump to the conclusion that a child with SM is on the autism spectrum. There are definitely some common behaviors that could be misinterpreted.  Children on the spectrum may have a delay or lack of spoken language.  They may have trouble interacting socially with peers and/or adults and often avoid eye contact.  An appearance of looking shut down can also occur.  The HUGE difference between the autism and selective mutism is that SM is SITUATIONAL.  A child with autism will consistently exhibit these types of behavior no matter the setting; however for a child with SM their level of communication varies from setting to setting depending on the anxiety felt in the specific environment. 


When we were in the early stages of trying to figure out what was going on with my son our pediatrician who had "some" knowledge of SM told me that he was on the autism spectrum.  I knew for sure that this wasn't true.  My son was extremely loving, joyful, cuddly and talkative in his home environment.  He had an abundance of imagination and empathy.  I changed doctors shortly thereafter and never looked back.  


It is so easy to put all your trust in a medical professional and accept what they tell you.  I think it happens all the time and is one of the reasons autism rates have risen so drastically.  It is so crucial to trust your gut, do your research and if you are a parent, be your child's advocate.   


3.  People with selective mutism have a below average intelligence.


It is easy to see how educators could perceive children with SM this way, as standard student evaluation methods often involve verbal participation and test results.  Children with SM can appear to be less intelligent, due to their lack of participation in the classroom and often poor test results due to anxiety.  This is where an IEP or 504 plan that includes accommodations for a more accurate assessment of the child with SM is so important.  One of my favorite quotes is "Not being able to speak is not the same as not having anything to say."  These children have so much knowledge to share.  They take in everything and absorb information, but because of their anxiety, it stays hidden and people make assumptions.  


The first time I realized my son had an issue was during a preschool parent teacher conference.  She gave me his little "report card" and said that his verbal skills could not be evaluated because she never once heard him speak.  She thought he was struggling with language development, when at home we were impressed by his mature vocabulary and ability to recite books by memory!  In my interactions with parents of children diagnosed with selective mutism,  I have heard the same findings from them in the area of their children being highly intelligent.  


4.  Selective mutism is caused by a language impairment

Physically being unable to speak in specific environments does not necessarily mean that a person has a language impairment.  While there can be a speech language issue involved, many children with SM can speak extremely well, when and where they feel comfortable.  My son had a very strong vocabulary from very early on.  Those family members he felt comfortable speaking with always commented on how well he spoke and how mature his vocabulary was for his age.   Selective mutism can develop in part due to a speech issue, but it is, at it's core, an anxiety issue.

5.  Selective mutism is something you outgrow if you wait long enough.


No!  I strongly believe people do not outgrow selective mutism without proper treatment. They might find ways to develop coping mechanisms, but this type of anxiety doesn't just go away and it is not healthy to ignore. Over time it can even lead to a conditioned response of being nonverbal,  Not treating it can lead to other problems including poor self esteem, self confidence, depression, social isolation and so many other psychological issues.   One of the biggest frustrations for me is the lack of understanding most medical professionals have about SM.  Patients/Parents are often misinformed by their doctor and or pediatrician that they/their child is just shy or it is best to wait it out. Early treatment is so key and the longer you wait to treat SM the more difficult it is to overcome.


6. Bribing someone with selective mutism or pressuring them to speak will produce results.


Actually you want to do the exact opposite.  Expectation of speech & focusing on talking actually increases anxiety and reinforce muteness. Anyone who has interaction with someone struggling with SM should be educated to remove all pressure and expectation to speak as a first step. Reducing anxiety and increasing the comfort level has to occur before the possibility of communication will take place.


Before we met with an SM treatment professional, I admit I was guilty of trying to bribe my child to speak in certain situations.  I am positive many other parents, relatives, care takers, friends and educators have done the same as well before they were educated about SM, because it just seems like a natural thing to try.  So many are currently doing this today and will continue to do so until they are correctly informed about the term selective mutism and how to interact with someone with this disorder.  Another reason why spreading awareness is so important!


7. People with selective mutism have experienced a traumatic event or abuse that resulted in them becoming mute.  

Again, it is key to remember that SM is situational.  If a child experienced a traumatic event and became mute as a result, they would most likely be nonverbal in all situations and environments. If someone has selective mutism, their level of communication varies from setting to setting depending on the anxiety felt in the specific environment.  Often times, people only see a child in one setting and therefore falsely assume he or she is like this everywhere.  It is heartbreaking to me, as a parent who loves her children so much, to think that someone could perceive my child's SM as a result of abuse on my part.


According to the Smart Center, where my son went for treatment, the majority of children with selective mutism have a genetic predisposition to anxiety.  There are many different factors that contribute to SM including timid temperament, sensory difficulties, bilingual challenges, and increased expectation.  While a traumatic event or abuse could possibly lead to someone being mute, it is not what causes selective mutism.  


8. Selective mutism is a rare childhood anxiety disorder.


From what I have read, until the mid 90s there was a lack of research of the topic of sm and prevalence rates vary.  On paper, selective mutism may seem like a rare occurence, but I believe the reality is very different. I feel that selective mutism is not as uncommon as it seems, but rather the misunderstandings on the subject leads to misdiagnoses.   Due to a lack of studies and treatment professionals that truly understand selective mutism, I feel that people with SM are often assumed to be just shy, disgnosed with autism, oppositional defiant disorder, etc and then go down the wrong treatment path.  Getting the correct treatment is crucial to overcoming selective mutism which is one of the reasons I am so dedicated to raising awareness, clearing up these misunderstandings and encouraging early treatment of SM.



Please share this to help spread awareness.  Thank you!



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