About SM Brochure

Understanding Selective Mutism
Brochure

A Silent Cry for Help!
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WHAT IS SELECTIVE MUTISM?
Selective Mutism is a social anxiety disorder most commonly found in children. It is characterized by a persistent failure to speak in select settings which continues for more than 1 month. These children understand spoken language and have the ability to speak normally. In typical cases, they speak to their parents and a few select others. Sometimes they do not speak to certain individuals in the home. Most are unable to speak in school and in other major social situations.

Generally, most function normally in other ways. Most learn age appropriate skills and academics. Currently, SM, through published studies, appears to be related to severe anxiety, shyness, and social anxiety, SM may be associated to a variety of things, but the exact cause is unknown. These children may respond or make their needs known by nodding their heads or by pointing. Some remain expressionless and/or motionless until someone correctly guesses what they want. The majority of these children expresses a great desire to speak in all settings, but are unable to due to anxiety, fear, shyness and embarrassment. Many do participate in activities nonverbally.

The withdrawn behavior is not usually obvious until the child begins school. Sometimes, even then, the child is viewed as shy and it is assumed that the shyness is temporary and will be outgrown. By the time SM is recognized, if it is recognized, the child has usually experienced at least 2 years in which no verbalization has become a way of life. The behavior becomes increasingly difficult to change because of the lapse of time without intervention.
WHAT ARE THE FIRST SYMPTOMS OF SELECTIVE MUTISM?
The first symptoms of SM are usually noticeable between the ages of 1 to 3 years. These symptoms may include shyness, hiding, a reluctance to speak in some settings, and a fear of people. There may be a predisposition to SM and the symptoms become noticeable when the child is requested to respond verbally and/or interact in social situations where speech is expected, including pre-school, elementary school and community environments.

WHAT CAUSES SELECTIVE MUTISM?
The cause has not been established. There are few systematic research studies and they suggest the possibility of a genetic influence or vulnerability for SM. The majority of families who contact the Foundation describe either themselves or other family members as previously or currently experiencing SM, extreme shyness, panic attacks, social anxiety, or similar type symptoms.

IS SELECTIVE MUTISM CAUSED BY ABUSE?
Fortunately, research has discarded this theory. However, due to the misunderstanding and misdiagnosis of the symptoms, some parents have been suspected or accused of child abuse. Sexual abuse has been suspected as well. The Selective Mutism Foundation, Inc. wishes to emphasize the vital need to clarify these unjust assumptions. The suspicion or accusation of parental child abuse is devastating and has caused tremendous grief and deterred many families from seeking help for their children. There is always a possibility that some children who have been abused do not speak. However, the abuse may not be specific to immediate family members, but could occur from any adult, or even other children. We advise contacting the appropriate agencies only if there is a definite indication of abuse.

HOW IS SELECTIVE MUTISM DIAGNOSED?
The crucial diagnostic element is that the child has the ability to comprehend spoken language and to speak normally, but usually fails to do so in select settings. These children display reasonably appropriate verbal and interactive skills at home in the presence of a few individuals with whom they feel at ease. The term Selective Mutism should distinguish individuals who demonstrate selectivity with whom they speak and are comfortable with, from individuals who speak to no one. Populations which should be excluded are immigrants who speak another language, have no history of the disorder, and experience SM for a short period of time, and those who suddenly and temporarily stop speaking due to a traumatic event. In these cases the mutism is usually transient.

DO INDIVIDUALS EXPERIENCING SELECTIVE MUTISM HAVE ASSOCIATED BEHAVIORS?
Yes. Associated behaviors may include no eye contact, no facial expression, immobility, or nervous fidgeting when confronted with general expectations in social situations. These symptoms do not indicate willfulness, but rather an attempt to control rising anxiety. Some may withdraw by pulling back when approached or touched.

Often the body language is misinterpreted as abuse; however, we have found that these behaviors stem from anxiety. Based on responses to the Foundation, a number of individuals report also having Obsessive Compulsive Disorder (OCD) and/ or Tourette Syndrome type symptoms, and a variety of phobias as well.

IS THERE A RELATION BETWEEN SELECTIVE MUTISM AND AUTISM?
SM is often erroneously mistaken for Autism. Some individuals who have Autism or are on the Autism Spectrum have varying language abilities and are not controlled by social anxiety. In contrast individuals experiencing SM are capable of speaking and functioning normally in comfortable situations.

WHAT IS THE DIAGNOSTIC AND STATISTICAL MANUAL OF MENTAL DISORDERS (DSM)?
How has the classification of SM in the DSM affected diagnosis and treatment? The DSM is the most widely used diagnostic reference book utilized by mental health professionals in the United States. The DSM is usually revised at 10 or more year intervals. Due to prior lack of research on SM (until 1994) diagnostic criteria had to be ascertained by examining existing publications.

Those available publications presented various theories, many which described children experiencing SM as refusing to speak, having speech impairments, and displaying controlling, manipulative, oppositional, and angry behaviors. Due to this, as we perceived in 1991, mischaracterization of SM children, SM’s association with anxiety had been neglected. Parents had been frequently blamed for causing SM or worse- accused of child abuse.

Our efforts, including providing research participants for published legitimate scientific studies were the first and only voices to create publicity in the 1990’s. This enabled us to provide research participants; thus becoming instrumental in influencing important changes, including improved diagnostic guidelines and renaming the disorder from Elective Mutism (DSM III and DSM III-R), to Selective Mutism 313.23 in the DSM IV (1994). Another important change brought about by our efforts resulted in replacing the term “refusal to speak” with “failure to speak”; thereby eliminating the notion that nonverbalization is intentional. Our efforts and information along with few additional published studies trickled into the DSM V (2014) continuing to shape and redefine SM as a social anxiety disorder. SM was finally removed from the residual section in the DSM V and placed into the anxiety section to properly influence diagnosis and treatment.

IS SELECTIVE MUTISM LIMITED TO CHILDREN?
No. Some children do experience SM for short periods of time while others experience it for many years. Based upon published literature and individual responses to the Foundation, SM can be persistent and can become intractable over time; especially if misdiagnosed and/or provisions of incorrect interventions.

Some adults report they still struggle with symptoms of SM, while others have overcome it. Many adults, who are now able to speak socially report having residuals of SM; one or a combination of social anxiety, shyness, depression and panic attacks.

HOW IS THE DISORDER TREATED?
Behavioral interventions based on the treatment of anxiety and phobias have proven to be somewhat successful. Techniques should be consistent, and should include desensitizing the child by providing short term goals, positive reinforcement, and rewards to motivate the child to speak. Pressure, including punishment, bribery, or consequences are harmful. One word responses should be elicited at first, with gradual requests for more. After extensive treatment, some have been able to speak spontaneously in some if not all social situations.

Various medications, known to be effective in treating adults with anxiety and/or social anxiety are reported to be effective for many children, usually in conjunction with behavioral treatment.

WHEN SHOULD SELECTIVE MUTISM BE TREATED?
There are two chief factors in determining when treatment is necessary: age and severity. If the mutism persists for more than 1 month, another dominant language is not interfering and there are no verbal responses at all, treatment should begin immediately. For the child who exhibits mild symptoms such as responding in a soft voice, and interacts with others, treatment may not be necessary unless the symptoms continue for many months. It is sometimes difficult to know if or when to intervene, as there are variant degrees of the disorder. For those experiencing severe forms of SM, immediate intervention is advisable because the symptoms can increase. Generally speaking, a younger child has a good chance of recovering, if treated, because of the shorter interval of time where no verbalization has occurred in school or in other major settings.

HOW CAN PARENTS HELP THEIR CHILD WHO IS EXPERIENCING SELECTIVE MUTISM?
Parents can help their child by providing every opportunity for socialization and speaking. Behavioral techniques should be implemented in all social environments where verbalizing is difficult. Parents should contact teachers, the principal, school psychologist, guidance counselor, or social worker. These individuals can play a very important role in assisting families and implementing a consistent treatment plan in school.

DO STUDENTS EXPIENCING SELECTIVE MUTISM HAVE SPECIAL EDUCATION NEEDS?
SM is not associated with learning or other impairments; therefore special education programs should be cautiously considered. There are no special education programs available for these students. Individualized programs can be designed and implemented within regular education environments. Others may require coordination between regular and special education; a 504 Accommodation Plan and/or an IEP, depending on the skill level and resources available within the school district.

HOW CAN THE SKILLS OF A CHILD EXPERIENCING SELECTIVE MUTISM BE ASSESSED?
Professionals will need to modify their typical assessment strategies when working with these individuals. As they may fail to verbalize, evaluation scores do not reflect their true academic levels, IQ’s, or potential. In order to avoid placing these students into inappropriate educational settings, evaluators need to be particularly cautious.

An effort should be made to evaluate the child at home with the parent present. The child can be asked to read into a tape recorder at home. Some skills and speech and language samples may be obtained and assessed over the telephone, as many children experiencing SM will verbally respond. Testing material that is used for the hearing impaired should be utilized as well.

HOW CAN TEACHERS ASSIST STUDENTS WHO EXPERIENCE SELECTIVE MUTISM?
Teachers play an integral part in helping students who are experiencing SM. Understanding that the symptoms are not intentional will reduce the frustration and anger which teachers often disclose. Consistent behavioral strategies should and can be easily implemented in the classroom. Strategies should focus on encouraging, not forcing the child to speak. Praise and rewards for speaking, and participation in classroom tasks (e.g. monitor), will all contribute to lowering the anxiety, while helping the child to feel integrated, positive and independent.

HOW MANY PEOPLE HAVE SELECTIVE MUTISM?
Some published literature suggests that SM is rare, and found in less than 1 percent of child guidance, clinical, and school social casework referrals. However, based on responses to the Foundation, we believe that it is far more prevalent. Some publications suggest that there is a slightly higher percentage of females experiencing SM than there are males. However, due to unreported, undiagnosed/misdiagnosed cases, the ratio is unknown.

HOW DID SELECTIVE MUTISM GET IT’S NAME?
Selective Mutism was first reported by a German physician, Kussmaul, in 1877. He described physically normal children who developed mutism in certain situations. He called the condition “Asphasia Voluntaria”, meaning voluntary mutism. Later, an English physician, Tramer (1934), described several similar cases and coined the term “Elective Mutism”.

He suggested that this term be used to classify children who spoke only to certain people, (e.g. family members or close friends), but not to others. In 1993 we thought that the word “elective” was suggestive of implying a deliberate decision not to speak. Subsequently, through our efforts, the term was changed to Selective Mutism in the DSM IV (1994) to remove the oppositional or willful component. Accordingly, the Foundation’s name was changed to “Selective Mutism Foundation, Inc.” (1993).

WHAT IS THE FOCUS OF RESEARCH?
Few researchers investigate diagnosis, assessment and treatment of SM. Studies focus on contributing factors, as well as the development of effective assessment and treatment technologies for children experiencing this problem. Much consideration is given to the probability of the predisposition to anxiety, shyness, and social anxiety as contributing factors.

WHAT IS THE SELECTIVE MUTISM FOUNDATION, INC.?
The Selective Mutism Foundation, Inc. is the pioneer and only voluntary national non-profit organization dedicated to:

 Increasing the knowledge and sensitivity of professionals who treat individuals experiencing Selective Mutism.
 Finding the cause and cure for Selective Mutism.
 Improving treatments and medications for Selective Mutism.
 Continuing the development and implementation of interventions in educational establishments.
 Promoting legitimately published research studies.
 The development of educational evaluation materials.
 Promoting the integrity of SM and effective treatment.
 Preventing isolation for those experiencing Selective Mutism and their families.

We provide information to individuals who are experiencing or have experienced Selective Mutism, their relatives, medical and mental health professionals, and other interested and concerned people. We assist with developing support groups throughout the country to help individuals and their families understand Selective Mutism and offer mutual support. We are available to organize/attend workshops and national conferences for families, researchers, clinicians and others interested in Selective Mutism.

We maintain a national listing of individuals experiencing SM, as well as a list of individuals who provide written agreements to participate in studies.

The Selective Mutism Foundation, Inc. website includes this brochure, our list of bibliographies on SM, forms for participation in research, treatment interventions, a guest book, media coverage, and more.

WHY DONATE TO THE SELECTIVE MUTISM FOUNDATION, INC.?
To help us to continue to effect the early identification and treatment of SM and patient advocacy. To obtain through our website accurate information on treatment, research studies, and scientific discoveries. To help us work towards a goal of understanding the cause(s) of Selective Mutism and of supporting studies of this disorder such that affective treatment can be developed.

TO HELP CONQUER SELECTIVE MUTISM!
Funding for educational brochure (1994) was provided by UpJohn Co., Inc.