1.) I have just learned my child has selective mutism. What should I do now?+-
A comprehensive evaluation by a mental health professional (e.g., a psychologist, psychiatrist, or clinical social worker) is important for confirming the presence of selective mutism (SM) and identifying other conditions that might contribute to impairments in functioning. A thorough assessment of your child’s needs will allow a professional to determine the best way to help your child. SMA provides guidelines for finding a professional who treats selective mutism as well a directory of professionals by state. Don’t hesitate to ask questions to make sure that professionals are prepared to meet your child’s needs! The SMA bookstore and the SMA online library provide many resources for caregivers interested in learning about SM, educating others with whom their child interacts, and advocating for their child at his/her school. Finally, be sure to take care of yourself. Having a child diagnosed with SM can be stressful and parents often feel that others don’t quite “get it.” Connecting with other families through SMA and/or accessing professional support for yourself will remind you that you are not alone.
2.) Where can I find treating professionals in my state?+-
This is one of the most frequent questions that parents have and also not an easy one to answer! It is often frustratingly difficult to find treating professionals who specialize in selective mutism; however, there are some helpful strategies that you can use to identify the right provider for your child. First, you can browse through the list of treating professionals on this website using the following link: http://www.selectivemutism.org/find-help/find-a-treating-professional/. These are providers who have identified themselves as being able to treat Selective Mutism.
Of course, this list of treating professionals is not exhaustive, and there are some important things to keep in mind when trying to find a treating professional. The first is that selective mutism is an anxiety disorder in which a child’s anxiety interferes with his or her ability to communicate. Providers who treat this disorder should be well-versed in treating childhood anxiety and have good knowledge of selective mutism and how it is treated. When an experienced provider is not available, it also may be appropriate to work with providers who are committed to seeking out information and supervision for selective mutism treatment. Second, you likely will have to do some exploration about where to find providers such as by asking your child’s pediatrician, school, family friends, as well as calling different hospitals/clinics and agencies in order to find potential providers. Third, the next step is to speak to a potential provider via phone and get a sense of his/her professional background, knowledge of SM, and treatment approach to make sure it is aligned with what you are looking for based on the information you have learned about SM. Finally, another thing to keep in mind as you connect with a treating professional is that the relationship the provider has with you and your child is going to be an important part of what helps treatment move forward. If, after working with a provider, you are not feeling that the connection is good or that treatment is not progressing, it will be important to discuss this together in order to make sure that everyone is on the same page with regard to the direction of treatment.
The following are a couple of links that can help guide you through the steps of finding a treating professional:
3.) I would like more information on the 504/IEP process and how to advocate for my child's needs.+-
Understanding how the educational system works in regard to working with a child with selective mutism is the key to advocating for your child’s needs. Children who have selective mutism can either obtain accommodations through a 504 plan or intervention through an Individualized Education Plan (IEP). A 504 plan is relatively easy to obtain and only requires a diagnosis of selective mutism (or anxiety) from a qualified treating professional or pediatrician and evidence of some impairment in the educational setting. A 504 plan can provide instructional accommodations in the classroom so that children with selective mutism can more fully participate in all aspects of the school environment. Examples of accommodations include the ability to complete a test a different way/format, use of verbal intermediaries, and ability to request special accommodations in regard to school placement (teachers, friend in the class, etc.). Accommodations vary based on a child’s specific needs and the parent/caregiver, teacher, and qualified professional should determine what accommodations will best help the child with selective mutism be successful in the school environment.
An Individualized Education Plan differs from a 504 in that provides a deeper level of support and interventions (not just accommodations) that take place to help a child overcome SM. The process to obtain an IEP is much more stringent and requires an in-depth evaluation by qualified professionals, usually within the school environment. Possible classifications for students with selective mutism include Emotional Disability (ED), Speech/Language Impairment (SLI) and Other Health Impaired (OHI).
For parents/caregivers that are interested in obtaining these levels of educational support for their child, a child study or student support meeting should be requested through the child’s teacher or guidance counselor. At that meeting, a team of people (parent/teacher/guidance counselor/treating professional) will decide how best to proceed to help the child be successful.
For more information regarding potential 504 accommodations, click here:
For more information regarding IEP and 504, click here and look through our online library:
4.) What are some phrases/tips to use when someone is prompting my child to speak when he/she is uncomfortable?+-
It can often send a parent on alert when someone asks your child a question when he/she is uncomfortable. However, instead of responding in panic and jumping into rescue your child when he/she is anxious, take a deep breath, stay calm, and try to remember to model brave and approach behavior. This may mean leaning in towards your child and encouraging them with cheerleading statements (e.g., I know you can do this. You have done it before, I know you can do it again). You can briefly disclose to the other person that your child is working on using their brave voice, answering questions, or practicing new brave goals. This not only gives them some understanding of what you and your child are dealing with, but also gives your child a few seconds to start thinking about their answer.
Your child should always be given the opportunity to respond and by not jumping in to rescue immediately, it allows them time to experience the anxiety, learn it is ok to be a little anxious, and that the anxiety will not kill them. It also instills in them that you are confident in that they will be able to answer (even if it is not a perfect success). Try to give them 5-10 seconds to respond before you repeat the question, move to another question, or jump in. If you give them the opportunity and your child looks to you for support, you have several options that allow you to support them in answering the question in some way by breaking the task down into smaller, more manageable goals:
1. Have them turn around (away from the new person asking a question) and answer you first (whether that is in a whisper, or in their regular voice). Just by answering you first, they have practiced their answer before and will likely be easier to do it again closer to the person asking the question. Have them turn sideways and answer again, and then towards the new person and answer again. You have just shaped them towards responding closer to the person asking.
2. Have them answer to you (again in a whisper or regular voice) and then you reflect out to the other person what their answer was, giving your child credit for speaking (i.e., Sally just told me she is in Kindergarten).
3. Be brave yourself and ask the person if they don’t mind asking your child a different question that she is really good at answering since she is practicing being brave. For example, “Thanks for asking her a question. My child is working on being brave in answering questions and is great at answering how old she is – could you ask her how old she is?” Most of the time, people will say yes and help out. Have a few questions and answers that your child is more confident and brave in answering (often factual information is easier – age, grade, favorite color). This really gives your child more opportunities of answering and feeling successful!
4. Let your child know you could start the answer and they can fill in the blank with the last word. For example, Parent says, “Sally just turned ___” and Sally finishes with “5”. This allows your child to answer the question but not necessarily have to initiate the speaking behavior without some prompt from parents. This also works great when they are practicing asking questions back in conversation. Gets them over the hump of initiation and feel the success of at least getting one word responses out in front of others.
5. Give your child positive attention and praise for their behavior and being brave with another person. For example, “Thanks for answering me in front of the new person” or “Great answering that question with a new friend nearby”. This should also increase the frequency with which they will answer verbally in front of others.
5.) How can my child participate in sports or other activities? How can I prepare the coach/teacher?+-
Children with selective mutism can and should participate and sports and other activities. There are a few things to consider as you decide on activities for your child. First, consider whether your child is interested in the activity. If they are not, find an activity that interests them, as this will increase their motivation to participate, even if they are feeling anxious. When you find an activity that interests them, try to find one that functions in a smaller group format, as larger groups tend to be more difficult for children with SM. Contact the organization and ask if you can communicate with the coach. Explain your child’s situation and provide the coach with guidance on how to best approach and interact with your child in order to increase the likelihood of a verbal response. This might include speaking to the child when others are not nearby, using forced choice (or multiple choice) style questions, or using the parent as an intermediary. If your child is likely to be non-verbal during the activity, help the coach understand the ways in which your child is most likely to respond (for example yes/no questions, or no questions at all). Providing the coach with information and guidance will increase the likelihood of a successful and enjoyable experience for your child.
It can also be helpful if the child has a friend who is also participating in the activity. If your child is speaking to their friend, see if you can arrange for your child and their friend to arrive at the activity early and spend some time together. This may help your child to “warm up” and feel more comfortable participating, and possibly speaking, during the activity.
It is important not to simply avoid activities if you know you child is not ready to speak. Finding activities that they can feel comfortable participating in will help them to interact, even if they are not ready to speak. Preparing the coach or teacher will help ensure that your child has a positive experience.
6.) I would like more information regarding the use of prescription medication for the treatment of SM.+-
A medical doctor (psychiatrist, pediatrician) can prescribe medications that address the anxiety that may underlie the child’s inability to speak in certain situations. Medications are most effective when combined with cognitive, behavioral, and/or other psychological strategies, especially to help the child maintain gains in communication over time. In particular, the SSRI (selective serotonin reuptake inhibitors; e.g., Prozac, Zoloft) have the most evidence for being useful in youth with anxiety conditions. Fluoxetine (or Prozac) has been the most frequently used SSRI for treating children with SM (see Carlson et al. 2008). The Child Anxiety Multimodal Study (CAMS) found that both cognitive behavioral therapy and sertraline (Zoloft) reduced the severity of anxiety in children with anxiety disorders (60% and 55%, respectively), but that the combination of the two therapies had a superior response rate (81%) among children ages 7-17 with anxiety disorders.
Medication may be an option when you are simultaneously working on tactics/techniques to help and no matter what you are doing, anxiety is too high to allow the child to feel successful or a sense of mastery of the situation. When a course of cognitive and behavioral or other psychological strategies have been tried without much success, then it may be time to recommend a medication consult to determine if augmenting the psychotherapy with a medication would be useful. It may be that the medication may bring down the anxiety just enough to allow the child to engage in active cognitive and behavioral exposures that they have been unable to engage in before or are unsuccessful in staying in the exposure task. The goal is that the child will make gains from the learning that occurs in the exposure tasks and that eventually the child can be tapered back down or off completely over time. A medical doctor (MD or psychiatrist) are the ones that should assist in the tapering up and down of the medication and should provide families with support on what the best options are for their specific child as all children have different responses. Most of the medications that are used with children to date, only cause minimal side effects (e.g., stomach distress, headaches) that decrease after a few weeks of being on the medication (e.g., Black and Uhde 1994; Dummit et al. 1996). Click here for Dr. Steven Kurtz ‘s presentation on medication use in children with SM.
7.) What are some tips on how to handle birthday parties or holidays?+-
Whether your child is invited to a birthday party, participate in holiday festivities or joining any new activities, it is important to slowly ease into these. A personal plan for your child with goals and steps might be very helpful to prepare for the party or other activity.
- Discuss the upcoming party, holiday or activity with your child first.
- Plan the steps to use to get to the party, stay at the party and how to become comfortable at the party.
- Visit the party place or activity before the actual day if you can to become familiar with it.
- Share information about SM with people who will be present before the actual day to help everyone understand better who your child is.
- Decide on the steps and goals you want to work on before the party and activity, and a reward or brave reward will make for a great plan.
- Showing up a little early on the day of the party or other activity can help your child get comfortable talking before everyone else is there.
- During the party, look for small ways your child can work on bravery. Can they speak to the parent at a party but away from others? Are they at a point where someone (perhaps a well known friend) can ask a question that they can answer (“ are you going to eat cake or no cake?)
- Praise your child for any behaviors that approach engaging (e.g. “great job going and sitting with your friends”, or “I love how you played on the trampoline”).
8.) Why does my child struggle with SM? Is it hereditary? Did I do something wrong?+-
You did not do anything “wrong”. Most parents are doing the best they can to help their child navigate the world and wanting to shield your child from anxiety and distress is a natural impulse. It is not helpful to blame parents for doing anything wrong. Rather, the focus should be on helping to provide parents and other adults in the child’s life a new set of skills to help the child approach rather than avoid situations.
There are many possible reasons children develop selective mutism. No single cause has been established, though emotional, biological, psychological and social factors may influence its development. Many children with selective mutism have siblings, parents or grandparents with anxiety disorders. Anxiety disorders are often hereditary and the avoidance of specific situations or objects can be modeled to young children. Furthermore, there may be an overreaction in the threat signal in the brain. In the case of selective mutism, the anxiety responses are triggered by social interactions and settings where speaking is expected including school, the playground or social gatherings. Although there may be no logical reason for the fear, the feelings that the child with SM experiences are just as real as if an actual threat or danger were present. Furthermore, children with expressive language disorders and or are English language learners may be at a higher risk for developing selective mutism. While these factors do not cause SM, they can contribute to a child’s anxiety with speaking. The child may become more self-conscious about his or her speaking skills and may have increased fear of being judged negatively by others.
Children with selective mutism often have an additional anxiety disorder, beyond selective mutism, such as generalized anxiety or social anxiety. In addition, most children with selective mutism are described at a young age as very shy, and with an inhibited or anxious temperament or personality. Children who are very shy and inhibited may first begin to withhold speech when beginning elementary school. Specifically, children with selective mutism often experience severe anxiety when asked to speak. The response to increased anxiety is avoidance of speech that then reduces the anxiety. Mutism is strengthened over time when it causes the child’s anxiety to reduce after not speaking. For example, a child with SM may become anxious when the teacher asks her a question. The child’s anxiety increases as the teacher and class wait for her to answer and she herself attempts to answer. The anxiety will likely cause the child with SM to avoid answering the question and her avoidance may successfully result in a decrease in anxiety. The reduction in anxiety then reinforces the avoidance, thus strengthening the mutism. Furthermore, children with selective mutism often speak comfortably at home. Thus, it can be very distressing for parents when the child with selective mutism does not speak in social situations, such as the park or store. Parents may feel distress or anxiety when their child does not answer a question posed by another person, or they do not answer them in the store. Therefore, they may answer the question for the child to avoid feeling embarrassed or to help their child, and unintentionally reinforce the child’s mutism.
This is a representation of the mutism cycle:
Expectation of speech→anxiety→avoidance→Relief (which is reinforced and the cycle continues)
9.) What are some ways I can encourage my child to make friends while working on overcoming SM?+-
Friendships are vital to all children’s social and emotional development. Peer interactions provide the opportunity to learn important social skills such as effective communication, cooperation and problem-solving. Encouraging your child to develop friendships is therefore an essential component in the overall treatment of selective mutism. But whereas children without SM typically find friends to be intrinsically reinforcing, for those with SM, this may not initially be the case. At the onset of treatment, a play date may be daunting to the child with SM and contrived reinforcement (such as earning tokens that can be exchanged for a reward) may be necessary. Play dates early in treatment should be kept relatively short and structured. For example, they could include a closed-ended activity such as going bowling, making cookies, or playing a board game. It’s important to select an activity your child enjoys and is good at. You may need to role play components such as having your child read the cookie recipe out loud or recite the rules of the game. Your child may need you to join in the activity at the onset of the play date, but perhaps you can gradually fade back your involvement so that by the end, the two children are playing together without you being next to them. The eventual goal is for children with SM to begin to contact the natural reinforcement of having fun playing with a peer.
10.) Should I tell other parents of kids in my child's class that he/she is struggling with SM?+-
Even in if your child with SM is quite young and in a preschool or kindergarten class, other young children quickly become aware when a child is not speaking. They might talk openly about the fact that another child is not speaking, ask questions, or tell others. In many cases, classmates speak for the child or look after them.
Helping children with SM to become verbal and communicate with others is a process that involves working with the child AND working with those around them. Those around them (classmates, teachers and parents) can learn to change their approach to the child in order to help the child begin the process of becoming verbal. For this reason, it can be very useful to help other parents understand why your child does not speak, explaining how anxiety about social communication leads to their silence. Providing these parents with strategies for themselves and for their own child to use in communicating with your child can help others feel comfortable. Providing these strategies can also support your child in their efforts to begin speaking because others will be more aware of the best ways to interact with your child.
11.) I want to talk to my son's school and tell the class about his SM. The kids often ask "why doesn't Johnny talk" What are some things I can say?+-
First talk to the teacher and find out when a good time to do this may be. Depending on the age of the class and children, you should tailor your conversation so that the language chosen is appropriate for the age of the child. It’s best to be factual and brief— You might say something like “Johnny really loves coming to school and playing with his friends. He wants to talk and is working on brave talking.” Sometimes he talks to you outside of school (or doesn’t) and this doesn’t mean he doesn’t like you. You can thank peers for being a good friend by playing and including the SM child. Answer questions factually and honestly.
12.)What are the various treatment approaches for SM?+-
Therapy should always start with education to parents/caregivers about SM. The treatment approach and the treatment itself often includes behavioral interventions such as shaping, stimulus fading, exposures and teaching distress tolerance. Medication is sometimes used in conjunction with therapy to address the anxiety that underlies the child’s inability to speak in certain situations. Some children with selective mutism also benefit from speech-language therapy, occupational therapy, sensory-integration therapy, and other interventions that may be recommended by the main treatment provider(s). The following link includes further information about empirically-supported treatment approaches and their descriptions:
13.) What are some children's books that deal with SM?+-
Children with SM may believe they are the only person who experiences difficulty speaking in certain settings. Therefore stories about other children with SM can be beneficial. The following books are designed to be read to children with SM:
Cat’s Got Your Tongue? A Story for Children Afraid to Speak by Charles Schaefer
Maya’s Voice by Wen-Wen Cheng
Unspoken Words: A Child’s View of Selective Mutism by Sophia Blum and Elisa Shipon-Blum
Lola’s Words Disappeared and Leo’s Words Disappeared by Elaheh Bos
Too Shy for Show and Tell by Beth Bracken and Jennifer Bell
Why Dylan Doesn’t Talk: A Real-Life Look at Selective Mutism Through the Eyes of a Child by Carrie Bryson and Dylan Bryson
Understanding Katie by Elisa Shipon-Blum
Sophie’s Story: A Guide to Selective Mutism by Vera Jeffe
There are also a few books designed to be read to peers of children with SM:
My Friend Daniel Doesn’t Talk by Sharn Longo
Charli’s Choices by Marian Moldan
14.) Should my child who has SM be homeschooled?+-
Children with SM can attend any type of school that the family feels is best for them. If a child with SM is homeschooled, it is important for that child to have consistent opportunities for interaction with other children and adults outside the family. Ideally, the child would have exposure to small and larger group interaction. Consistent, planned interaction with the same group of people on a regular basis can help your child to increase their comfort as a foundation for beginning verbal interaction. Your child can also be enrolled in small group sports, art classes, and other activities to increase their exposure to regular group interaction.