“When the Words Just Won’t Come Out”

Understanding Selective Mutism

By: Dr.Elisa Shipon-Blum

President and Director Selective Mutism Anxiety Research and Treatment Center (SMart-Center)
Chief Executive Officer  ~  Executive Medical Director
The Selective Mutism Group Childhood Anxiety Network (SMG~ CAN)

Clinical Assistant Professor Family Medicine and Psychology PCOM

SMinfo@selectivemutism.org  ~  215-887-5748

 

What Is Selective Mutism?

Selective Mutism is a complex childhood anxiety disorder characterized by a child’s inability to speak in select social settings, such as school.  These children are able to talk normally in settings where they are comfortable, secure and relaxed.

Over 90% of children with Selective Mutism also have social phobia or social anxiety.  This disorder is quite debilitating and painful to the child.  Children and adolescents with Selective Mutism have an actual FEAR of speaking and social interactions where there is an expectation to talk. 

Not all children manifest their anxiety of speaking the same way. Some may be completely mute and unable to speak to anyone in a social setting, while others may be able to speak to a select few or perhaps whisper to others. Some children may stand motionless with fear, as they are confronted with specific social settings. They may freeze, be expressionless, unemotional and may be socially isolated, while other, less severely affected children, may ‘look’ relaxed, carefree and socialize with one or few children but are unable to speak.

 

Why does a child develop Selective Mutism?

The majority of children with Selective Mutism have a genetic predisposition to anxiety.  In other words, they have inherited anxiety from one or more family members.  Very often, these children show signs of severe anxiety, such as separation anxiety, frequent tantrums and crying, moodiness, inflexibility, sleep problems, parental separation issues, and extreme shyness from infancy on. 

 

Children with Selectively Mutism children often have severely inhibited temperaments.

When compared to the typically shy and timid child, most children with SM are at the extreme end of the spectrum for timidness and shyness. 

Most, if not all, of the distinctive behavioral characteristics that children with SM portray can be explained by the studied hypothesis that children with inhibited temperaments have a decreased threshold of excitability in the almond-shaped area of the brain called the amygdala.

According to studies, when confronted with a fearful scenario, the amygdala receives signals of potential danger (from the sympathetic nervous system) and begins to set off a series of reactions that will help individuals protect themselves. In the case of children with Selective Mutism,  the fearful scenarios are social settings such as birthday parties, school, family gatherings, routine errands, etc.

Approximately 20-30% children with SM have subtle speech and language abnormalities, such as expressive language disorders or language delays.  However, these children still have anxiety as their underlying cause for their mutism. Etiologies for speech and language abnormalities can vary between immature speech and language development to mild speech impediments.  More studies are necessary to fully access speech and language abnormalities and SM. Please note, that there are many children with SM who are early speakers without ANY speech delays/disorders.

Research (unpublished!) from work at the Selective Mutism Anxiety Research and Treatment Center (SMART-CENTER) indicates that there is a proportion of children with SM who come from bilingual families, have spent time in a foreign country, or have been exposed to another language during their formative language development (ages 2 –4 years old.)  These children are usually innately temperamentally inhibited (prone to shyness and anxiety), but the additional stress of ‘speaking another language’ and being insecure with their skills is enough to cause an increased anxiety level and mutism.

However, it should be noted, that for a small percentage of children with SM do not seem to be the least bit shy. Many of these children may perform and do whatever they can to get others attention. Reasons for mutism in these children are not proven, but unpublished data from SMART-Center indicates that these children may have other reasons for mutism; i.e., years of living mute and therefore have ingrained mute behavior despite their lack of social anxiety symptoms or other developmental/speech problems.

 

There is NO evidence that the cause of Selective Mutism is related to abuse, neglect or trauma.

What behavior characteristics does a child with Selective Mutism portray in social settings? 

 

It is important to realize that the majority of children with SM are as normal and are as socially appropriate as any other child when in a comfortable environment.  Parents will often comment how boisterous, social, funny, inquisitive, extremely verbal, and even bossy and stubborn these children are at home!  However, what differentiates children with SM is their severe behavioral inhibition and inability to speak in most social settings.  These children feel as though they are ‘on stage’ every minute of the day!  This can be quite heart wrenching for both the child and parents involved.   Often, these children show signs of anxiety before and during most social events.  Tummy-aches, nausea, vomiting, diarrhea, headaches and an array of other physical complaints are common before school or social outings.

When in school, most children with SM stand motionless and expressionless, and most demonstrate awkward or stiff body language.  Some children turn their heads, chew or twirl their hair, avoid eye contact, or withdraw into a corner.  Over time, these children learn to cope and participate in certain social settings; only they perform nonverbally or by talking quietly to a select few.  Social relationships are very difficult for these children.

Children with SM have tremendous difficulty initiating and are slow to respond even when it comes to nonverbal communication.  This can be quite frustrating to the child as time goes by.  The child’s nonverbal communication in can go on for many years, become more ingrained and reinforced unless parents have their child properly diagnosed and treated. Ingrained behavior often manifests itself by a child ‘looking’ and ‘acting’ normally but communicating verbally. This particular child cannot just ‘start’ speaking. Treatment needs to center on methods to help the child ‘unlearn’ present mute behavior.

 

What are the most common personality traits of children with Selective Mutism?

 

The following are various personality characteristics of children I have encountered among hundreds of children with Selective Mutism via SMART-Center.

--MUTISM in at least one setting (some children may be mute in just school while others may be mute in select social settings outside the home and may talk nonstop until someone confronts them, and in rare situations, some children with SM may be mute at home too. These children were mute out of the home for period of time and for varied reasons, mutism persists at home (not to be confused with traumatic mutism where child becomes mute in ALL settings)

--Blank facial expressions, lack of smiling, frozen appearance, extreme difficulty with eye contact, avoiding social interaction, awkward and stiff body language; These symptoms may be present in just some children; especially younger children with SM or during NEW situations.   

--Difficulty responding nonverbally to others. I.e., cannot point/nod in response to a teacher’s question, or indicate ‘thank you’ by mouthing words. For many, waving hello/goodbye is extremely difficult. However, this is situational. This same child cannot only respond nonverbally when comfortable, but can chatter nonstop! 

--Difficulty initiating nonverbally  Ie  Difficulty or unable to ‘initiate’ play with peers or going up to teacher to indicate need or want.

--Slowness to respond  (i.e. when asked a question, will take longer than the average child to respond either nonverbally or verbally.  This is one reason why standardized testing is often difficult and yields inaccurate results)                                                                                                                                        -
--Heightened sensitivity to surroundings/noise/crowds/touch/food tastes-textures – Some SM children also have Sensory Integration Disorder (DSI) symptoms.
                                                                          
--Excessive tendency to worry and have fears; Often manifested in children older than 6 years of age

--Behavioral manifestations at home;  I.e. moodiness, assertiveness, inflexibility, procrastination, crying easily, need for control, bossiness, domination, extreme talkativeness and expressiveness

--Intelligent, perceptive and inquisitive     
                                                                                        
--Introspective and sensitive; Seems to understand the world around them more thoroughly than other children the same age, and portrays an increased sensitivity to feelings and thoughts, although may have difficulty ‘expressing’ feelings
                                                                                                                 
--Artistic interests- Perhaps a manifestion of their need for ‘expression’ and ‘communication’ since mutism is communicatively stifling                                                                                                                           

As one can clearly see, MUTISM is just one of the many characteristics that Selectively Mute children portray.  Bottom line, we must study these children thoroughly and completely!

 

When are most children diagnosed as having Selective Mutism?

 

The average age of diagnosis is between 3 -8 years old; however, these children were probably temperamentally inhibited and severely anxious in social settings as infants and toddlers, but adults thought they were just ‘very shy.’  It is not until children enter school, and there is an expectation to perform, interact and speak, that Selective Mutism becomes more obvious.  What normally happens is that teachers will tell parents that the child is not talking or interacting with the other children.  In other situations, parents will notice, early on, that their child is not speaking to most individuals outside the home.  Most children have a history of separation anxiety and being ‘slow to warm up.’

 If mutism persists for more than a month, a parent should mention this to their physician. 

 

Why do so few teachers, therapists and physicians understand Selective Mutism?

 

Studies of Selective Mutism are scarce, and most research results are based on subjective findings of limited children.  In addition, textbook descriptions are often nonexistent or information is limited, and in many situations, inaccurate and misleading.

As a result, few people truly understand Selective Mutism, Professionals and teachers will often tell a parent, ‘the child is just shy,’ or ‘they will outgrow their silence.’  Others interpret mutism as a means of being oppositional and defiant; where mutism is a means of manipulating and controlling a situation.  Some professionals view Selective Mutism as a variant of autism or an indication of severe learning disabilities.  For a child who is truly affected by Selectivel Mutism this is completely wrong and inappropriate!

Research at SMART-Center indicates that children who seem ‘oppositional’ in nature often have parents/teachers/treating professionals who have ‘pressured’ them to speak for months, perhaps years. Mutism not only persists in these children, but is negatively reinforced. These children may develop oppositional behaviors out of a combination of frustration and their inability to ‘make sense’ of their mutism and OTHERS pressuring them to speak.

 

As a result of the scarcity and, often, inaccuracy of the information within the literature, children with SM may be misdiagnosed and mismanaged. In many circumstances, parents will wait and hope their child outgrows their mutism. However, without proper recognition and treatment, most of these children do NOT outgrow SM and end up going through years without speaking, interacting normally, or developing proper social skills. Infact, many individuals who suffer from SM and social anxiety who do not get proper treatment to develop necessary coping skills may develop the negative ramifications of untreated anxiety. (See next question)

Why is it so important to have my child diagnosed when he/she is so young?

 

Our findings indicate that the earlier a child is treated for Selective Mutism, the quicker the response to treatment, and the better the overall prognosis.  If a child remains mute for many years, his/her behavior can become a conditioned response where the child literally gets used to non-verbalizing.  In other words, Selective Mutism can become a difficult habit to break! 

Because Selective Mutism is an anxiety disorder, if left untreated, it can cripple a child for life and, unfortunately, curb the way for an array of academic, social and emotional repercussions such as:
Ø Development of worsening anxiety.
Ø Development of depression and manifestations of other anxiety disorders.
Ø Social isolation and withdrawal
Ø Poor self-esteem and self-confidence
Ø School refusal, poor academic performance, and the possibility of quitting school
Ø Underachievement academically and in the work place
Ø Self-medication with drugs and/or alcohol
Ø Crime and involvement with the juvenile justice system
Ø Suicidal thoughts and possible suicide

Therefore, our main objective should be to diagnose our children early so they can receive proper treatment at an early age, develop proper coping skills, and overcome anxiety.

 

Anxiety disorders are the #1 mental illness among children and adolescents.  

The US Surgeon General recently stated that our country is in a state of emergency as far as children’s mental health is concerned.  Evidently, 10% of children suffer from mental disorders, but less than 5% of these children are actually receiving treatment.

If parents suspect their child has Selective Mutism, what should they do?

 

Parents should remove all pressure and expectations for the child to speak, conveying to their child that they understand he/she is ‘scared’ to speak and that they will help their child through this difficult time. Praise the child’s accomplishments and efforts, and support and acknowledge their difficulties and frustrations.

Parents should go with their instincts.  Speak with their family physician or pediatrician and/or seek out a psychiatrist or a therapist who has experience with Selective Mutism. Please note that having ‘experience’ with SM does not mean approach and understanding is correct. Infact, a clinician with less experience, yet has an excellent understanding about Selective Mutism may be an ideal choice for your child!


What are the KEY questions to ask a potential therapist or physician?
 
First and foremost, educate yourself as much as possible before seeing any professional. Parents should read as much information as they can about Selective Mutism.  The Selective Mutism Group Childhood Anxiety Network (SMG~CAN), www.selectivemutism.org, has over 6500 pages of information and is the largest, most comprehensive organization in the world dedicated to Selective Mutism. Do your homework! You will therefore have a better idea as to ‘what to look for’ if you understand SM.

Key questions to ask are:

-        What are your areas of expertise?

-        Have you ever treated a child with Selective Mutism? If so, how many and what are your success rates?

-        What are your views on Selective Mutism? In other words, what are some of the reasons a child manifests mutism?

-        What is your treatment approach to Selective Mutism? 

-        What will be my role as a parent? Teacher’s role? Etc.

-        What is your opinion on medication in treating SM and when do you consider medication?

-        Can you supply me with references of families whom you have worked with? KEY!!

 

**Caution: When speaking to potential treating professionals, please be cautious of those who see SM as ‘controlling/manipulative’ behavior. Treatment approaches where ‘discipline’ and ‘forcing’ a child to speak is inappropriate and will only heighten anxiety and therefore negatively reinforce mute behavior.

 

How is a child ‘evaluated’ for Selective Mutism?

 

A trained professional familiar with Selective Mutism will have a parental interview.  Emphasis will be on social interaction and developmental history, other manifestations of anxiety, behavioral characteristics (shy temperament), home life description (family stress, divorce, death, etc.) and medical history.  From the results of the initial interview, the professional will often see the child.   Children with SM may or may not speak to the diagnosing professional. Whether a child DOES or DOES NOT speak to the evaluating physician does not really matter. An astute professional should be able to assess interpersonal communication skills and build rapport quite easily and if given at least one session and possibly viewing videotapes from home, can rule in or out Selective Mutism as a cause for mutism.

Because 20-30 % of children with SM have a subtle abnormality with speech and language, a thorough speech and language evaluation is often ordered.  If motor/sensory issues exist an occupational therapy evaluation is also recommended.  A complete physical exam (including hearing), standardized testing, psychological assessments, as well as a thorough developmental screening are often recommended if the diagnosis is not clear.

 

What are the diagnostic criteria for Selective Mutism?

 

A child meets the criteria for Selective Mutism if the following are true:

1- Child does not speak in ‘select’ places such as school or other social events,

2- But, they can speak normally in settings where the child is comfortable, such as at home.  (Although some children with SM can be mute at home)
3-The child's inability to speak interferes with their ability to function in educational and/or social settings.
4- Mutism has persisted for at least one month.

5- Mutism is not caused by a communication disorder (such as stuttering) and does not occur as part of other mental disorders (such as autism).

** Please note that the above criteria are quite vague/nonspecific and should not be used alone to rule in or rule out the diagnosis of Selective Mutism.  As mentioned earlier, children with Selective Mutism manifest many behavioral characteristics other than mutism. In addition, since SM children often have difficulty responding/inititating nonverbally SM can be viewed as a communication disorder.




 

How is Selective Mutism Treated?

 

The main goal with treatment is to lower anxiety , increase self-esteem and increase social confidence and communication in social settings.  Emphasis should never be on ‘getting a child to talk.’  ALL expectations for verbalization should be removed.  With lowered anxiety levels, confidence and appropriate tactics/techniques communication will increase and verbalization will eventually follow.

 

Treatment approaches are individualized, but the majority of children are treated by a combination of:

(1)   Behavioral  Therapy:  Positive Reinforcement and Desensitization techniques are the primary behavior treatments for SM, as well as removing all pressure to speak.  Emphasis should be on understanding the child and acknowledging their anxiety.  Introducing the child to social environments in subtle and non-threatening ways is an excellent way to help the child feel more comfortable, i.e., Parents can take the child into school when few people are around to get the child to ‘practice speaking.’  Eventually, bring a friend or two to school and allow the children to play when other children are not present.  Small groups, with only a small number of children, help, as well as allowing parents to spend time with the child within the class.  After the child is speaking quite normally, the teacher, and then the students are gradually introduced into the group setting.  Positive reinforcement for verbalization should be introduced when, and only when, anxiety is lowered and the child feels comfortable and is obviously ready for some subtle encouragement.

(2)   Play Therapy, Psychotherapy, and other psychological approaches to treatment can be effective if all pressure for verbalization is removed and emphasis is on helping the child relax and open up.  Confronting mutism in a non-threatening way is important.  These children are SCARED, and the focus should be to help them identify their level of ‘being scared' in a particular situation.  Helping them to realize that you understand and are there to help them relieves tremendous pressure.

(3)   Cognitive Behavioral Therapy:  CBT trained therapists help the child modify their behavior by helping them redirect their fears and worries into positive thoughts.  CBT needs to incorporate ‘awareness’ and acknowledgement of anxiety and mutism.  Most SM children ‘worry’ about others hearing their voice, asking them questions about ‘why they do not talk’ and trying to force them to speak.  Focus should be on emphasizing the child’s positive attributes, building confidence in social settings, and lowering overall anxiety and worries.

(4)   Medication:  Studies clearly indicate that the best approach to therapy is a combination of behavioral techniques and medication.  Since most parents are reluctant to start medication immediately, we often use behavioral techniques for an indeterminate amount of time.  If children are not making enough progress with behavioral therapy alone, we often recommend medication.  Medication in the form of serotonin reuptake inhibitors (SSRI’s) such as Prozac, Paxil, Celexa, Luvox, and Zoloft are very successful in the treatment of anxiety disorders.  Similar to the SSRI’s, there are other drugs that affect one or more neurotransmitters such as serotonin, norepinephrine, GABA, and dopamine, etc. and are also proving to be affective.  Examples are Effexor XR, Serzone, Buspar and Remeron.  Both classes of drugs work well in children that have a true biochemical imbalance.  This seems to be the case in the majority of children with SM.  Very often, we have seen positive effects in as little as a week!  Medication is used as a ‘jump start’ with the hope that, as we lower anxiety via medication, we can implement behavioral techniques more easily and successfully! Goals for medication are usually 9-12 months.

(5)   Self-esteem boosters:  Parents should emphasize their child’s positive attributes.  For example, if your child is artistic, then by all means show off their artwork!  Have a special wall to display your child’s masterpieces; perhaps they can even have a special exhibit!  Have them ‘explain’ their artwork to family members and close friends.  This promotes more verbalization practice, as well as helps with confidence! 

(6)   Frequent socialization:  Encourage as much socialization as possible without ‘pushing’ your child.  I recommend frequent play dates with classmates or even small group interaction with individuals the child knows well.  Goals are for your child to feel comfortable enough with their classmates so that verbalization will occur.  Most children with SM will talk to friends in their own home.  As the child gets increasingly comfortable speaking to one child, invite another child over, and then have two or three children at a time!  Transfer speaking into the school via set tactics/techniques. For some children, Social Skill therapy is necessary and often helpful in accomplishing increased communication.

(7)   School involvement:  Parents need to educate teachers and school personnel about Selective Mutism.  The school needs to understand that children with SM are not being defiant or stubborn by not speaking, that they truly CANNOT speak.  Explain to the teacher that a child needs to feel that it is ‘alright’ for them not to speak.  Nonverbal communication is acceptable in the beginning.  As the child progresses with treatment, the teacher should be involved in the treatment plan as well, with verbalization being encouraged in subtle, nonthreatening ways. 

(8)   Family involvement and parental acceptance:  Family members must be involved in the entire treatment process!  Very often changes in parenting styles and expectations are necessary to accommodate the needs of the child.  Remember, never pressure or force your child to speak, this will only cause more anxiety.  Convey to your child that you are there for them.  Spend one on one time, especially at night, when all pressure is off, and engage your child in discussions about their feelings.  Allowing your child to ‘open up’ helps relieve stress.  A parent’s acceptance and understanding is crucial for the child.

 

** Social-Communication Anxiety Therapy (SCAT) is the philosophy of treatment implemented at the Selective Mutism Anxiety Research and Treatment Center (SMART-Center).  Treatment focuses on the development of an ‘individualized treatment plan’ that focuses on the ‘whole child’ and incorporates a TEAM approach involving the child, parent, school personnel and treating professional.  Different types of therapeutic tactics/techniques are implemented to enable for increase in communication comfort (nonverbalàverbal) in various settings within the real world. Because anxiety levels change from situation to situation and often from one person to the next, methods often change from one social situation to another. Therefore, by lowering anxiety, increasing self-esteem as well as increasing communication and social confidence within a variety of REAL WORLD settings, the child suffering in silence will develop necessary coping skills to enable for proper social, emotional, developmental and academic functioning.

 

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