Selective Mutism & Autism Journeys

Autism Spectrum Disorder and Selective Mutism

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We're keeping personal details out of the public eye for our children's sake. But for those interested in connecting, getting more info, or hearing the specifics of our journeys, please contact me by clicking here.

I know how frustrating it can be to have questions that remain unanswered or run into dead ends trying to find treatment. We still have a long road ahead of us, but we've also come a long way from the start. So if you have any questions (or advice to offer!), I would absolutely love to connect with you. Just click the contact link above.

Autism Spectrum Disorder, Level 1

In the spring of 2014, our son was diagnosed with Autism Spectrum Disorder, Level 1. Level 1 is also known as high-functioning autism, or formerly Asperger's Syndrome; it's a disorder which leads to difficulty with communication, social interaction, and understanding others' feelings. ASD Level 1 is often accompanied by other challenges such as sensory integration issues, and mood disorders. You can read more about our journey here.

Selective Mutism

In early 2013 we discovered that our daughter had Selective Mutism. It's not very common, so I had a tough time finding information and figuring where we could even start to help her.  I've compiled the info below to hopefully help others out there in the same boat. (Disclaimer: this is based simply on my own non-expert research and experience as a parent, so please don't mistake it for professional advice!)


What is Selective Mutism (SM)? 
Selective Mutism is characterized as an anxiety condition which prevents a person from speaking in certain situations. People with SM are usually of normal intelligence, and in comfortable situations (ex. at home with family) they act normally and speak freely just like anyone else. But in intimidating settings like school or other public places, a person with SM becomes so anxious that they are unable to speak, even though they are fully capable of speaking in a comfortable situation. Their failure to speak is usually triggered in situations where there's some expectation of performance. People with SM appear to be very shy, when in reality they usually want very badly to speak to others. Older kids have described it as feeling like the words are stuck in their throat, or like they have become frozen. In comfortable situations they are often called chatterboxes, but when anxious, they simply cannot get the words out.

How is SM discovered and diagnosed? 
SM can be hard to pick up on because Selectively Mute children are so interactive around parents or family members. Usually parents have few indications of any issues. Parents may observe what seems like general shyness around strangers or in settings outside the home (e.g. at the grocery store, the doctor's office, at church, at play dates, etc.). Many times, though, SM is not discovered in children until they begin school, and the parents and teachers start communicating and putting the pieces of the puzzle together. Unlike other shy children, who usually become comfortable after the first month of school, Selectively Mute kids remain silent and may not participate in group activities even after many months. This is when caregivers or teachers usually begin to voice a concern and may mention something to an unsuspecting parent. Teachers are often surprised when parents tell them how outgoing the child is at home. SM should be diagnosed by a clinical psychologist through a thorough evaluation that includes screening for abnormal anxiety.

How common is SM?
SM is a relatively unknown condition. It usually affects children, but can last into adulthood if not recognized or treated. It's believed to be a rare condition, but children with SM are often misunderstood, misdiagnosed, and mistreated. Many children with SM are believed to be rude, defiant, or mentally handicapped because they do not respond verbally the way their peers do, even though they are usually of normal or above average intelligence. Because of this misunderstanding, some experts believe SM is more common than actually reported.

What causes SM? 
It's unknown, although many psychologists attribute it to a combination of genetic predisposition and environment.

What hurts?
Any actions that pressure someone with SM to speak or communicate can be detrimental--coercion to speak usually has the opposite effect than that which is desired. It's important to remember that a failure to speak is just the visible symptom of underlying anxiety from the environment. So coercion causes someone with SM to become more anxious and even more frozen in an attempt to communicate. For instance, a parent telling a child with SM that they need to say hello or goodbye to a teacher, or a teacher calling on a child with SM during class are both triggers that make the anxiety worse, and further impede any chance of speaking.

What helps?
Treatment (see below) and encouragement. Positively reinforcing any form of communication helps someone with SM feel good about that behavior and more comfortable in the experience. All communication, whether it's eye contact, smiling, waving, or speaking in a whisper should be highly praised. Finding ways to diffuse the anxiety from an intimidating situation can also help. Some children benefit from knowing about an upcoming event like show and tell, a speech, or a class concert if they can prepare ahead of time. Going over exactly what to expect during an event (like the songs they will sing), recording a video at home for a speech, or practicing ahead of time in an empty classroom may help ease anxiety in some cases. Allowing older children to communicate by writing on a white board in class is also a common practice to remove the expectation of speaking (with the goal of working toward speaking, of course). Recommendations have also included the "buddy system:" allowing the teacher to pair a Selectively Mute child with a friendly classmate, and inviting school friends over for playdates outside of school to break down barriers.

What about Treatment?
Early Intervention and professional treatment are considered the best response after discovering that one might have SM. Without intervention, anxiety causing SM may become worse, and follow a child in to high school or even adulthood. Research is ongoing regarding what type of treatment is best. Recommended treatment for young children involves Cognitive-Behavioral Therapy (CBT) and play therapy. There are some specific techniques (such as "sliding in") that are suggested to treat SM, in which gradual steps are taken to break down the barriers between comfortable environments and intimidating ones. For example, a teacher might visit the home and interact with the child in a comfortable environment, or a parent (a comfortable presence) could visit an intimidating school environment during the school day, and gradually more people or activities involving performance can be introduced into each setting. It's important to have a team built that involves all the regular players in a child's life--for school-age children this should be his or her parents, therapist, classroom teacher, classroom assistants or aides, the school psychologist, principal or assistant principal, and possibly the speech pathologist. Be sure to sign appropriate information/medical release forms so that all members of the team are free to communicate with each other, and set up regular meetings with the team to evaluate the treatment plan and progress. Outside of school and home, this could also mean communicating regularly with sports team coaches, extracurricular activity leaders, church or faith-based educators/pastors, and anyone else who your child might need to interact with.

Where to start? Any Recommended Resources? 
Many states have Early Intervention Programs (called Child Find in the state of Colorado) set up for children before they reach school age. There may be a link on the School District Website, or a number for the School District's Special Education Office; usually they can direct you to the Early Intervention Program.

If a child is already in a public school, the school psychologist and school principal should be able to tell you what steps to take for individualized help or to develop an Individualized Education Plan (IEP) for your child.

Regarding professional therapy, it is rare that you will find a psychologist who is familiar with SM without first making many phone calls and doing a lot of research. To begin, it best first to speak with a primary care provider or pediatrician. He or she might know of someone who can help, or at the very least provide referrals if needed. It can also be helpful to obtain a list of approved providers from your insurance company (preferably child psychologists who use cognitive-behavioral therapy). You can call providers from the list and ask if they are familiar with SM, willing to treat it, or if they can refer you to a provider who might be able to help. If there is a Children's Hospital nearby, check with their Psychology Department to find out if they have any programs for evaluation or treatment. If not, it may be worth it to call the nearest general hospital to ask for providers familiar with treating anxiety. It can be a long and grueling process, but certainly worth it in the end to help a child overcome SM and approach social interaction without reservation for the rest of his or her life!

I highly recommend this book which has been extremely helpful thus far: "Helping Your Child with Selective Mutism; Practical Steps to Overcome a Fear of Speaking"

I also recommend this website: The Selective Mutism Foundation