This post addresses what to do if you have a child with Aspergers or High-Functioning Autism who voluntarily refuses to speak or only speaks to certain people or in certain situations.
Children with Aspergers and High-Functioning Autism may not be as withdrawn around others as those with other, more debilitating forms of Autism. For example, an Aspergers child may engage in a one-sided, long-winded discourse about a favored subject, while not recognizing the listener's feelings or reactions. This social awkwardness, or failure to act appropriately in social interactions, may appear as disregard for other's feelings and may come across as insensitive. However, not all Aspergers children will approach others. Some of them may display Selective Mutism (SM) in which they don’t speak at all to most people – but speak excessively to specific people. Some may choose to talk only to people they like.
Selective Mutism (SM) is a complex childhood anxiety disorder characterized by a youngster’s inability to speak and communicate effectively in select social settings (e.g., school). However, these kids are able to speak and communicate in settings where they are comfortable, secure and relaxed.
More than 90% of kids with SM also have social phobia or social anxiety. This disorder is quite debilitating and painful to the youngster. Kids and teens with SM have an actual fear of speaking and of social interactions where there is an expectation to speak and communicate.
Many Aspergers kids with SM have great difficulty responding or initiating communication in a nonverbal manner; therefore social engagement may be compromised in many kids when confronted by others or in a setting that is overwhelming or they sense a feeling of expectation.
Not all kids manifest their anxiety in the same way. Some may be completely mute and unable to speak or communicate to anyone in a social setting, others may be able to speak to a select few or perhaps whisper. Some kids may stand motionless with fear, as they are confronted with specific social settings. They may freeze, be expressionless, unemotional and may be socially isolated. Less severely affected kids may ‘look’ relaxed, carefree and socialize with one or a few kids but are unable to speak and effectively communicate to educators and most or all peers.
When compared to the typically shy and timid youngster, most kids with SM are at the extreme end of the spectrum for timidity and shyness.
Why a youngster develops SM:
The majority of kids with SM have a genetic predisposition to anxiety. In other words, they have inherited a tendency to be anxious from one or more family members. Very often, these kids show signs of severe anxiety, such as separation anxiety, frequent tantrums and crying, moodiness, inflexibility, sleep problems, and extreme shyness from infancy on.
Kids with SM often have severely inhibited temperaments. Studies show that people with inhibited temperaments are more prone to anxiety than those without ‘shy’ temperaments. Most, if not all, of the distinctive behavioral characteristics that kids with SM portray can be explained by the studied hypothesis that kids with inhibited temperaments have a decreased threshold of excitability in the almond-shaped area of the brain called the amygdala. 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 people protect themselves. In the case of kids with SM, the fearful scenarios are social settings such as birthday parties, school, family gatherings, routine errands, etc.
Some kids with SM have Sensory Integration Dysfunction (DSI) which means they have trouble processing specific sensory information and may be sensitive to sounds, lights, and touch, taste and smells. Some kids have difficulty modulating sensory input which may affect their emotional responses. DSI may cause a youngster to misinterpret environmental and social cues. This can lead to Inflexibility, frustration and anxiety. The anxiety experienced may cause a youngster to shut down, avoid and withdraw from a situation, or it may cause him/her to act out, have tantrums and manifest negative behaviors.
Some kids (20-30%) with SM have subtle speech and/or language abnormalities such as receptive and/or expressive language abnormalities and language delays. Some may have subtle learning disabilities including auditory processing disorder. In most of these cases, the kids have inhibited temperaments (prone to shyness and anxiety). The added stress of the speech/language disorder learning disability, or processing disorder may cause the youngster to feel that much more anxious and perhaps insecure or uncomfortable in situations where there is an expectation to speak.
A small percentage of kids with SM do not seem to be the least bit shy. Many of these kids perform and do whatever they can to get others attention and are described as ‘therapist mimes!’ Reasons for SM in these kids are not proven, but preliminary research indicates that these kids may have other reasons for SM. For example, years of living mute and therefore have ingrained mute behavior despite their lack of social anxiety symptoms or other developmental/speech problems. These kids are literally ‘stuck’ in the nonverbal stage of communication.
The difference between SM and traumatic SM:
Kids who suffer from SM speak in at least one setting and are rarely mute in all settings. Most have inhibited temperaments and manifest social anxiety. For kids with SM, their SM is a means of avoiding the anxious feelings elicited by expectations and social encounters.
Kids with traumatic SM usually develop SM suddenly in ALL situations. An example would be a youngster who witnesses the death of a grandparent or other traumatic event, is unable to process the event and becomes mute in all settings.
It is important to understand that some kids with SM may start out with SM in school and other social settings. Due to negative reinforcement of their SM, misunderstandings from those around them and perhaps heightened stress within their environment, they may develop SM in all settings. These kids have ‘progressive SM’ and are mute in/out of the home with all people, including moms and dads and siblings.
Behavior characteristics a youngster with SM portrays in social settings:
It is important to realize that the majority of kids with SM are as normal and are as socially appropriate as any other youngster when in a comfortable environment. Moms and dads will often comment how boisterous, social, funny, inquisitive, extremely verbal, and even bossy and stubborn these kids are at home! What differentiates most kids with SM is their severe behavioral inhibition and inability to speak and communicate comfortably in most social settings.
Some kids with SM feel as though they are ‘on stage’ every minute of the day! This can be quite heart wrenching for both the youngster and moms and dads involved. Often, these kids show signs of anxiety before and during most social events. Physical symptoms and negative behaviors are common before school or social outings.
It is important for moms and dads and educators to understand that the physical and behavioral symptoms are due to anxiety and treatment needs to focus on helping the youngster learn the coping skills to combat anxious feelings.
It is common for many Aspergers kids with SM to have a blank facial expression and never seem to smile. Many have stiff or awkward body language when in a social setting and seem very uncomfortable or unhappy. Some will turn their heads, chew or twirl their hair, avoid eye contact, or withdraw into a corner or away from the group seemingly more interested in playing alone.
Others are less avoidant and do not seem as uncomfortable. They may play with one or a few kids and be very participatory in groups. These kids will still be mute or barely communicate with most classmates and educators.
As social relationships are built and a youngster develops one or a few friendships, he/she may interact and perhaps whisper or speak to a few kids in school or other settings but seem to be disinterested or ignore other classroom peers. Over time, these kids learn to cope and participate in certain social settings. They usually perform non-verbally or by talking quietly to a select few. Social relationships become very difficult as kids with SM grow older. As peers begin dating and socializing more, kids with SM may remain more aloof, isolated and alone.
Kids with SM often have tremendous difficulty initiating and may hesitate to respond even non-verbally. This can be quite frustrating to the youngster as time goes by. The youngster’s nonverbal communication may go on for many years, becoming more ingrained and reinforced unless the youngster is properly diagnosed and treated. Ingrained behavior often manifests itself by a youngster ‘looking’ and ‘acting’ normally but communicating non-verbally. This particular youngster cannot just ‘start’ speaking. Treatment needs to center on methods to help the youngster ‘unlearn’ the present mute behavior.
The most common characteristics of kids with SM:
Most, if not all, of the characteristics of kids with SM can be attributed to anxiety.
• Appearance - Many Aspergers kids with SM have a ‘frozen-looking,’ blank expressionless face, stiff, awkward body language with lack of eye contact when feeling anxious. This is especially true for younger kids in the beginning of the school year or when suddenly approached by an unfamiliar person. They often appear like ‘animal in the wild’ where they stand motionless with fear! The older the youngster, the less likely they are to exhibit stiff, frozen body language. Also, the more comfortable a youngster is in a setting, the less likely a youngster will ‘look’ anxious. For example, the young youngster who is comfortable and adjusted in school, yet is mute, may seem relaxed, but SM is still present.
• Common symptoms - Picky eater, bowel and bladder issues, sensitive to crowds, lights (e.g., hands over eyes, avoids bright lights), sounds (e.g., dislikes loud sounds, hands over ears, comments that it seems ‘loud’), touch (e.g., being bumped by others, hair brushing, tags, socks, etc), heightened senses, and self-regulation difficulties (e.g., act outing, defiant, disobedient, easily frustrated, stubborn, inflexible, etc.).
• Emotional - When the child is young, he/she may not seem upset about SM since peers are more accepting. As kids age, inner turmoil often develops and they may develop the negative ramifications of untreated anxiety.
• Physical Symptoms - Stomach ache, nausea, vomiting, joint pains, headaches, chest pain, shortness of breath, diarrhea, ‘nervous feelings,’ ‘scared feelings’, etc.
• Sensory Integration Dysfunction (DSI) symptoms/Processing Difficulties/Delays - For many Aspergers kids with SM, sensory processing difficulties are the underlying reason for 'shut down' and SM. In larger, more crowded environments where multiple stimuli is present (such as the classroom setting), where the youngster feels an expectation, sensory modulation specifically, sensory defensiveness exists. Anxiety is created causing a 'freeze' mode to take place. The ultimate 'freeze mode' is SM.
• Social Anxiety Symptoms - Over 90% of kids with SM have social anxiety. Uncomfortable being introduced to people, teased or criticized, being the center of attention, bringing attention to himself/herself, perfectionist (afraid to make a mistake), shy bladder syndrome (Paruresis), and eating issues (embarrassed to eat in front of others).
• Social Being - Most kids with SM want friends, and need friends. Most kids with SM have appropriate social skills, but some do not and need help in developing proper social skills.
• Temperamental Inhibition - Timid, cautious in new and unfamiliar situations, restrained, usually evident from infancy on. Separation anxiety as a young youngster.
Within the classroom, a youngster with sensory difficulties may demonstrate one or more of the following symptoms:
- difficulty completing tasks
- difficulty following a series of directions or staying on task
- hesitation in responding (even non-verbally)
- not playing at all
- playing alone
Sensory processing difficulties may or may not cause 'learning' or academic difficulties. Many Aspergers kids, especially, highly intelligent ones, can compensate academically and actually do quite well. Many focus on their academic skills, often leaving behind 'the social interaction' within school. This tends to be more obvious as the youngster ages. What is crucial to understand is that many of these symptoms may not exist in a comfortable and predictable setting, such as at home.
In some kids, there are processing problems, such as auditory processing disorder, that cause learning issues as well as heightened stress.
• Behavioral - Kids with SM are often inflexible and stubborn, moody, bossy, assertive and domineering at home. They may also exhibit dramatic mood swings, crying spells, withdrawal, avoidance, denial, and procrastination. These kids have a need for inner control, order and structure, and may resist change or have difficulty with transitions. Some kids may act, silly or act out negatively in school, parties, in front of family and friends. WHY? Because these kids have developed maladaptive coping mechanisms to combat their anxiety.
• Communication Difficulties - Some kids may have difficulty responding non-verbally 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 youngster cannot only respond non-verbally when comfortable, but can chatter nonstop! Some kids may have difficulty initiating non-verbally when anxious (i.e., has difficulty or is unable to ‘initiate’ play with peers or going up to teacher to indicate need or want).
• Co-Morbid Anxieties - Separation anxiety, Obsessive Compulsive Disorder (OCD), hoarding, Trichotillomania (i.e., hair pulling, skin picking), Generalized Anxiety Disorder Specific phobias, Panic Disorder.
• Social Engagement difficulties - When one truly examines the characteristics of a youngster with SM, it is obvious that many are unable to socially engage properly. When confronted by a stranger or less familiar individual, a youngster may withdrawal, avoid eye contact and 'shut down' not only leaving a youngster speechless but preventing him/her from engaging with another individual. Greeting others, initiating needs/wants etc. are often impossible for many Aspergers kids. Many shadow their parent in social environments often avoiding any social interaction at all. As the youngster ages, freezing and shut-down rarely exist, but the youngster remains either non-communicative or will respond non-verbally after an indeterminate amount of warm up time.
When most kids are diagnosed with SM:
Most kids are diagnosed between 3 and 8 years old. In retrospect, it is often noted that these kids were temperamentally inhibited and severely anxious in social settings as infants and toddlers, but adults thought they were just ‘very shy.’ Most kids have a history of separation anxiety and being ‘slow to warm up.’ Often it is not until kids enter school and there is an expectation to perform, interact and speak, that SM becomes more obvious. What often happens is educators tell moms and dads the youngster is not talking or interacting with the other kids. In other situations, moms and dads will notice, early on, that their youngster is not speaking to most people outside the home. If SM persists for more than a month, a parent should bring this to the attention of their youngster’s doctor.
Studies of SM are scarce. Most research results are based on subjective findings based on a limited number of kids. In addition, textbook descriptions are often nonexistent or information is limited, and in many situations, the information is inaccurate and misleading. As a result, few people truly understand SM. Therapists and educators will often tell a parent, ‘the youngster is just shy,’ or ‘they will outgrow their silence.’ Others interpret the SM as a means of being oppositional and defiant, manipulative or controlling. Some therapists erroneously view SM as a variant of autism or an indication of severe learning disabilities. For most kids who are truly affected by SM, this is completely wrong and inappropriate!
Kids who seem oppositional’ in nature often have moms and dads, educators, and/or treating therapists who have pressured them to speak for months, perhaps years. SM not only persists in these kids, but is negatively reinforced. These kids may develop oppositional behaviors out of a combination of frustration, their own inability to ‘make sense’ of their SM, and others pressuring them to speak.
As a result of the scarcity and, often, inaccuracy of information in the published literature, kids with SM may be misdiagnosed and mismanaged. In many circumstances, moms and dads will wait and hope their youngster outgrows their SM (and may even be told to do so by well-meaning, but uninformed therapists). However, without proper recognition and treatment, most of these kids do not outgrow SM and end up going through years without speaking, interacting normally, or developing appropriate social skills. In fact, many people 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.
The importance of getting a diagnosis while the child is young:
The earlier a youngster is treated for SM, the quicker the response to treatment, and the better the overall prognosis. If a youngster remains mute for many years, his/her behavior can become a conditioned response where the youngster literally gets used to non-verbalizing. In other words, SM can become a difficult habit to break!
Because SM is an anxiety disorder, if left untreated, it can have negative consequences throughout the youngster’s life and, unfortunately, pave the way for an array of academic, social and emotional repercussions. For example:
- Depression and manifestations of other anxiety disorders
- Poor self-esteem and self-confidence
- School refusal, poor academic performance, and the possibility of quitting school
- Self-medication with drugs and/or alcohol
- Social isolation and withdrawal
- Suicidal thoughts and possible suicide
- Underachievement academically and in the work place
- Worsening anxiety
The main objective is to diagnose kids early so they can receive proper treatment at an early age, develop proper coping skills, and overcome their anxiety.
What parents should do if they suspect their youngster has SM:
Moms and dads should initially remove all pressure and expectations for the youngster to speak, conveying to their youngster that they understand he/she is ‘scared’ and it is ‘hard to get the words out’ and that they will help their youngster through this difficult time. Praise the youngster’s efforts and accomplishments, support and acknowledge the difficulties and frustrations.
Moms and dads should speak with their family doctor or pediatrician and/or seek out a psychiatrist or a therapist who has experience with SM. However, please note that having ‘experience’ with SM does not guarantee that the treatment approach and understanding is correct. In fact, a clinician with less experience, yet who has an excellent understanding of SM may be an ideal choice for your youngster!
Key questions to ask the therapists or doctor:
Do your homework! You will have a much better idea ‘what to look for’ if you understand SM. Educate yourself as much as possible before seeing any therapist. Moms and dads should read as much information as they can about SM.
Key questions to ask include...
- Can you supply me with references of families you have worked with
- Have you ever treated a youngster with SM? If so, how many and what are your success rates?
- How will you work with my youngster to help him/her progress communicatively?
- What are your areas of expertise?
- What are your views on SM?
- What are some of the reasons a youngster manifests SM?
- What is your opinion on medication in treating SM and when do you consider medication?
- What is your treatment approach to SM?
- What will be my role as a parent?
- What is the teacher’s role?
When speaking to potential treating therapists, please be cautious of those who see SM as a ‘controlling/manipulative’ behavior. Treatment approaches based on ‘discipline’ and ‘forcing’ a youngster to speak are inappropriate and will only heighten anxiety and negatively reinforce mute behavior.
Kids do not progress communicatively without learning coping skills. Simply lowering anxiety is not enough to enable the youngster to begin engaging socially, learning to progress to verbal communication and feeling comfortable in an environment. SKILLS must be taught.
Evaluation for SM:
A trained therapist familiar with SM will have a parental interview. Emphasis will be on social interaction and developmental history, other manifestations of anxiety, behavioral characteristics (e.g., shy temperament), home life description (e.g., family stress, divorce, death, etc.) and medical history. From the results of the initial interview, the therapist will often see the youngster. Kids with SM may or may not speak to the diagnosing therapist. Whether a youngster speaks to the evaluating doctor does not really matter. An astute therapist 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 SM as a diagnosis.
Because 20-30% of kids with SM have an 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, psycho-educational testing as well as a thorough developmental screening are often recommended if the diagnosis is not clear.
The diagnostic criteria for SM:
- Consistent failure to speak in specific social situations (in which there is an expectation for speaking, e.g., at school) despite speaking in other situations.
- The disturbance interferes with educational or occupational achievement or with social communication.
- The disturbance is not better accounted for by a Communication Disorder (e.g., stuttering) and does not occur exclusively during the course of a Pervasive Developmental Disorder, Schizophrenia, or other Psychotic Disorder.
- The duration of the disturbance is at least 1 month (not limited to the first month of school).
- The failure to speak is not due to a lack of knowledge of, or comfort with, the spoken language required in the social situation.
Associated features of SM may include excessive shyness, fear of social embarrassment, social isolation and withdrawal, clinging, compulsive traits, negativism, temper tantrums, or controlling or oppositional behavior, particularly at home. There may be severe impairment in social and school functioning. Teasing or goading by peers is common. Although kids with this disorder generally have normal language skills, there may occasionally be an associated Communication Disorder (e.g., Phonological Disorder, Expressive Language Disorder, or Mixed Receptive- Expressive Language Disorder) or a general medical condition that causes abnormalities of articulation. Mental Retardation, hospitalization or extreme psychosocial stressors may be associated with the disorder. In addition, in clinical settings kids with SM are almost always given an additional diagnosis of Anxiety Disorder, especially Social Phobia is common.
Treatment of SM:
The main goals of treatment should be to lower anxiety, increase self-esteem and increase social confidence and communication. Emphasis should never be on ‘getting a youngster to talk.’ ALL expectations for verbalization should be removed. With lowered anxiety, confidence, and the use of appropriate tactics/techniques, communication will increase as the youngster progresses from nonverbal to verbal communication.
Treatment approaches should be individualized, but the majority of kids are treated using a combination of approaches.
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 youngster and acknowledging their anxiety. Introducing the youngster to social environments in subtle and non-threatening ways is an excellent way to help the youngster feel more comfortable (i.e., moms and dads can take the youngster into school when few people are around to get the youngster to ‘practice speaking). Eventually, bring a friend or two to school and allow the kids to play when other kids are not present. Small groups with only a small number of kids help, as well as allowing moms and dads to spend time with the youngster within the class. After the youngster 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 youngster feels comfortable and is obviously ready for some subtle encouragement.
2. Cognitive Behavioral Therapy: CBT trained therapists help kids modify their behavior by helping them redirect their fears and worries into positive thoughts. CBT needs to incorporate awareness and acknowledgement of anxiety and SM. Most kids with SM ‘worry’ about others hearing their voice, asking them questions about ‘why they do not talk’ and trying to force them to speak. The focus should be on emphasizing the youngster’s positive attributes, building confidence in social settings, and lowering overall anxiety and worries.
3. 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 youngster. Remember, never pressure or force your youngster to speak…this will only cause more anxiety. Convey to your youngster that you are there for them. Spend one on one time, especially at night, when all pressure is off and engage your youngster in discussions about their feelings. Allowing your youngster to ‘open up’ helps relieve stress. A parent’s acceptance and understanding is crucial for the youngster!
4. Frequent socialization: Encourage as much socialization as possible without ‘pushing’ your youngster. Arrange frequent play dates with classmates or even small group interactions with people the youngster knows well. The goal is for your youngster to feel comfortable enough with the classmates so that verbalization will occur. Most kids with SM will talk to friends in their own home. As the youngster gets increasingly comfortable speaking to one youngster, invite another youngster over, and then have two or three kids at a time! Transfer speaking into the school via set tactics/techniques. For some kids, Social Skill therapy is necessary and often helpful in accomplishing increased communication.
5. Medication: Studies indicate that the most effective approach to treatment is a combination of behavioral techniques and medication. Often behavioral techniques are used for an indeterminate amount of time prior to the addition of medication. If kids are not making enough progress with behavioral therapy alone, medication may be recommended to reduce the anxiety level. Serotonin reuptake inhibitors (SSRI’s) such as Prozac, Paxil, Celexa, Luvox, and Zoloft are very effective 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. which are also proving to be affective. Examples are Effexor XR and Buspar. Both classes of drugs work well in kids who have a true biochemical imbalance. This seems to be the case in the majority of kids 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 the duration of treatment with medication are usually 9-12 months.
6. Play Therapy, Psychotherapy, and other psychological approaches: These can be effective if all pressure for verbalization is removed and emphasis is on helping the youngster relax and open up. Confronting SM in a non-threatening way is important. These kids are afraid, 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.
7. School involvement: Moms and dads need to educate educators and school personnel about SM! You must be an advocate for your youngster. The school needs to understand that kids with SM are not being defiant or stubborn by not speaking, that they truly can't speak. Explain to the teacher that a youngster needs to feel that it is ‘alright’ for them not to speak. Nonverbal communication is acceptable in the beginning. As the youngster progresses with treatment, the teacher should be involved in the treatment plan with verbalization being encouraged in subtle, non-threatening ways. An Individualized Educational Plan or 504 Plan may be necessary to help accommodate your youngster’s inability to communicate verbally and to help the youngster progress communicatively as well as build social comfort.
8. Self-esteem boosters: Moms and dads should emphasize their youngster’s positive attributes. For example, if your youngster is artistic, then by all means show off the artwork! Have a special wall to display your youngster’s masterpieces; perhaps you can even have a special exhibition! Have them ‘explain’ their artwork to family members and close friends. This promotes more verbalization practice, as well as helps with confidence!
The Aspergers Comprehensive Handbook