Your child is unable to eat, drink, talk, use the bathroom, or make eye contact with others while at school. But at home, she relaxes and speaks freely with her parents and siblings. After years of pleading with school officials, they finally agree to accommodate her, but admit they’ve never heard of Selective Mutism (SM).
This story is all too familiar for many families. According to the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, SM is a crippling anxiety disorder that prevents children from being able to speak in certain settings, typically outside the home. Originally thought to be very rare, recent studies suggest that SM affects about 1% of children, with rates higher in females. This figure is similar to other psychiatric disorders, like autism spectrum disorders. Yet less than 15% of adults have ever heard of it.
Many parents say a big challenge is stigma and lack of awareness. In an interview with the Trauma and Mental Health Report (TMHR), Andrea (name changed) shares the misperceptions others have about her daughter:
“People often think she is rude or that we are allowing her to get away with perceived rudeness, such as when she is unable to say ‘please’ or ‘thank you’. Some relatives think we just aren’t providing enough social stimulation for her. There is a lot of judgment about ‘why’ our kid is like this.”
Another parent interviewed by the TMHR recalls being told to “spank the stubbornness out” of her child by a family member when her son failed to respond to a question.
Even professionals have misconceptions. Children with SM are often treated unfairly and face barriers that prevent them from accessing necessary supports and services. In an interview with the TMHR Karishma (name changed) explains:
“We have faced a lot of hurdles. We have endured teachers who think that she’s being defiant and disrespectful when she doesn’t answer the teacher or participate in class. We ended up moving to another school to find a better match for her but it was still very difficult.”
Karishma herself struggled with SM as a child and recalls being strongly affected by the mistreatment she received from teachers: “They would tease and make fun of me in front of other students. It hurt me significantly in both my social and academic life.”
In a support group for parents of children with SM, one parent wonders whether her daughter’s civil rights were violated after a school psychologist refused to conduct an educational assessment on her child because it would be ‘too difficult’:
“She expected my daughter to speak during the testing and has even stated that the results were obscured because of her unwillingness to speak. The school psychologist believes my daughter does not have anxiety and feels that she just wants to control the situation.”
Many parents are frustrated by their inability to find treatment programs nearby, forcing them to travel long distances and spend large sums of money. Kate (name changed) describes this unfortunate situation in an interview with the TMHR:
“I wish there were more places that truly knew how to treat SM. It is not feasible money-wise for our family to make a trip to an out-of-state SM camp.”
It is critical that children receive adequate help in a timely manner to prevent further suffering. Evidence-based treatment for SM includes specialized cognitive-behavioural therapy and medication. It is also important that parents, therapists and school work together with the child to set treatment-related goals. If left untreated, SM is likely to persist into adolescence and adulthood, and may lead to other mental health problems. This was the reality for a parent in an online support group:
“My daughter is now 15 years old. She went through school without talking to a single child. I constantly asked school officials for an assessment but was repeatedly turned down. After 4 suicide attempts and self-harming, I feel the system has failed her. My daughter has no real social skills and has missed out on her teenage years with little hope of obtaining qualifications or a job.”
-Julia Martini, Contributing Writer