CHAPTER 3
Silent Voices
Listening to Some Young People with Selective Mutism and Their Parents
The voices of people who have been selectively mute are still largely missing from follow-up reports – and, in fact, from the literature on the subject as a whole.
(Cline and Baldwin 2004, p.213)
This statement became the catalyst for a research project, undertaken as part of an MA course at the University of Leicester (Roe 2011). It aimed to explore the perspectives and experiences of young people and their parents affected by Selective Mutism (SM) and give ‘a voice to the voiceless’.
Background
Children with SM are able to speak confidently in some places, but remain silent in others, usually in social situations outside the home. The disturbance lasts longer than one month, excluding the first month at school, and interferes with educational, occupational or social communication. It is not due to a lack of knowledge of, or comfort with, the spoken language required, and is not better accounted for by a communication disorder, pervasive developmental disorder, schizophrenia or other psychotic disorder (APA 1994).
In the past, these children were thought to be stubborn and oppositional, but now it is recognized that many are suffering from an overwhelming anxiety about speaking (Anstendig 1999; Cline and Baldwin 2004; Dow et al. 1995). SM was reclassified as an Anxiety Disorder in the Diagnostic and Statistical Manual-5 (APA 2013).
SM is a relatively rare condition, estimated by Cline and Baldwin (2004) as ‘6–8 cases of selective mutism per 1000 children through childhood…but…that may well be an underestimate’ (p.18). The causes of SM are complex:
The disorder can result from several diverse pathways reflecting complex interactions between multiple genetic, temperamental, psychological, developmental and social/environmental systems. The presence of risk and vulnerability factors may predispose certain children to develop SM, but these same factors could also lead to different outcomes.
(Cohan et al. 2006, p.351)
Onset often occurs in the early years, when the child begins to move outside the home. Girls are more frequently affected than boys and incidence rates are higher in ethnic minority and bilingual populations. Children with SM may also have various anxiety conditions and there may be a family history of shyness, anxiety, speech and language impairments or psychiatric disorders (Cline and Baldwin 2004; Johnson and Wintgens 2001).
Various methods have been used to treat SM, including psychodynamic, behavioural, therapeutic and family systems approaches. Sometimes different methods have been combined. Since the 1990s there has been some use of drugs in psychopharmacological treatments (Cline and Baldwin 2004).
Research rationale
The UN Convention on the Rights of the Child (United Nations 1989) Articles 12 and 13 asserted the child’s right to a voice in decisions affecting them. This principle was incorporated into British law in the Children Act 1989. Since then, there had been a rise of interest in listening to children and young people, including those with vulnerabilities.
However, this change seemed to have had no effect on SM research. Although youngsters and parents provided much of the information for such research, their personal experiences and perspectives were almost absent from the literature, with a few exceptions (Omdal 2007; Omdal and Galloway 2007).
The literature had other deficiencies:
•Few articles contained reports about strategies used by the individual with SM to communicate in situations where they were unable to speak, particularly in school.
•Much of the case study and research evidence on SM was on pre-school or primary school children. Older children were under-represented; even the largest survey in the literature only had 18 subjects aged 12–18 years (Ford et al. 1998).
•Sample sizes were generally small, often below 10.
•Studies were usually local; not many covered a wide geographical area.
•Few reports had systematic follow-up of cases.
This study attempted to rectify some of these deficiencies. It used the UK membership of the Selective Mutism Information & Research Association (SMIRA) to conduct an investigation over a wide geographical area, with larger numbers, in the under-researched older age group and provided a means by which the opinions and experiences of children with SM and their parents could be expressed.
Method
Since youngsters with SM have difficulty talking to strangers, an alternative to the interview method had to be found. Omdal and Galloway (2007) had used writing and a computer with three children in Norway, whilst Ford et al. (1998) employed a survey questionnaire in America.
These ideas were combined and two questionnaire surveys, incorporating Likert scales, closed and open questions, were devised and piloted, one for 10–18-year-olds and one for their parents. The questionnaires covered the areas of school, public/social and home/family, as well as SM history and treatment, communication strategies, helps and hindrances, opinions and feelings.
Sample
From the SMIRA membership, 214 potential participants were identified and sent information leaflets and consent forms, of whom 39 requested questionnaires.
This purposive sample may not be representative of all families with SM children, since those who had contacted SMIRA were likely to be the more motivated, articulate and computer-literate parents. However, Ford et al. (1998), who drew their large survey sample from the membership of the Selective Mutism Foundation Incorporated in America, explained that this approach ‘provided a large sample for a low incidence disorder…that included people from all four regions…from a self-referred, nonclinical organization’ which helped reduce ‘the referral and severity biases commonly found in samples from particular clinical settings’ (p.195). The membership of SMIRA was similarly able to provide a substantial, self-referred sample for this low incidence disorder from across the UK.
The volunteer families returned 30 completed questionnaire sets from England, Scotland and Wales, by post or e-mail, providing a good-sized sample in terms of SM research. The whole 10–18 age range was covered, as was the severity range, from badly affected to fully recovered, making this self-selecting sample sufficiently representative of the SM population for the purposes of this study. Pseudonyms were allocated to protect identities.
The most common family structure was two adults with two children. The majority of parents (84%) and young people (87%) were white British and spoke English, but 16 per cent of parents and 13 per cent of young people had other ethnicities and were bilingual.
Most young people (83%) attended mainstream school, although two had been home educated in the past, one at Key Stage 2 and one at secondary level. They attended school every day or most days, despite their anxiety about speaking in the school setting. As Adam, aged 10, put it, ‘I felt I did not want to go to school because it was scary.’ Four respondents were at college and one was not in education, employment or training.
Results
Analysis of the responses confirmed, extended and added new findings to the literature on SM.
Confirmations
This study confirmed many existing SM research findings:
•predominance of females affected: 7M and 23F gave a male–female ratio of 1:3.3
•incidence levels in first-born or only children: 56 per cent
•early onset: for 90 per cent SM began by age 5
•trigger event for SM: 50 per cent, which for 30 per cent was starting nursery/school
•familial shyness patterns: 77 per cent were presently or previously affected
•co-morbid conditions: 60 per cent, of which 40 per cent were anxiety conditions
•incidence levels in bilingual children: 13 per cent of young people
•success of behavioural treatments: 89 per cent in cases using these methods.
(Black and Uhde 1995; Cline and Baldwin 2004; Colligan, Colligan and Dilliard 1997; Crogan and Craven 1982; Dummit et al. 1997; Elizur and Perednik 2003; Ford et al. 1998; Johnson and Wintgens 2001; Kolvin and Fundudis 1981; Kristensen 2000; Kristensen and Torgersen 2001; Krysanski 2003; Manassis et al. 2003; Sluckin et al. 1991; Sluckin and Jehu 1969; Steinhausen and Juzi 1996; Vecchio and Kearney 2005.)
Extensions
This study extended existing SM research findings in several areas.
Diagnosis and treatment
Psychologists most frequently diagnosed SM, but teachers, speech and language therapists and parents were also involved in identifying it. Many of those who diagnosed SM were involved in its treatment.
The young people and parents shared their subjective experiences of the professionals involved and the outcomes of the treatments provided. Table 3.1 shows the results.
TABLE 3.1 YOUNG PEOPLE’S AND PARENTS’ OPINIONS OF PROFESSIONALS INVOLVED IN SM |
||||
|
Positive outcome |
Negative outcome |
Mixed outcome |
Totals |
|
|
Clinical, child and educational psychologists, psychiatrists and psychotherapists |
22 |
10 |
5 |
37 |
|
Child and Adolescent Mental Health Service |
4 |
7 |
2 |
13 |
|
GPs, health visitors, family/local clinics, paediatricians, occupational therapists, school doctors and school nurses |
11 |
6 |
8 |
25 |
|
Speech and language therapists (SLTs) |
15 |
1 |
1 |
17 |
|
Teachers and school staff, teaching assistants, SENCOs (Special Educational Needs Co-ordinators) and SEN teachers |
33 |
8 |
5 |
46 |
Examples of good practice in schools included:
•removing the pressure to speak
•allowing parents to support their child in school
•adopting strategies suggested by parents, psychologists and speech and language therapists (SLTs)
•allocating support staff to work with the child
•making special arrangements for break times.
Various treatment strategies were used, successively and in combination. SLTs using behavioural methods were included in the behavioural category. Table 3.2 shows the analysis of responses.
|
Positive outcome |
Negative outcome |
Mixed outcome |
Totals |
|
|
Behavioural stimulus fading and shaping techniques |
17 |
2 |
0 |
19 |
|
Speech and language therapy |
2 |
0 |
2 |
4 |
|
Drugs treatment |
3 |
0 |
1 |
4 |
|
Cognitive behaviour therapy |
1 |
1 |
1 |
3 |
|
No pressure to speak |
0 |
0 |
3 |
3 |
|
Art therapy |
2 |
0 |
0 |
2 |
|
Home education (at one Key Stage) |
2 |
0 |
0 |
2 |
|
Psychotherapy |
1 |
1 |
0 |
2 |
|
One-to-one teaching in school |
1 |
0 |
1 |
2 |
|
Emotions chart |
1 |
0 |
0 |
1 |
|
Social skills group in school |
1 |
0 |
0 |
1 |
|
Play therapy |
1 |
0 |
0 |
1 |
|
Family therapy |
1 |
0 |
0 |
1 |
|
Hypnotherapy |
1 |
0 |
0 |
1 |
|
Homeopathy |
1 |
0 |
0 |
1 |
|
Healer |
1 |
0 |
0 |
1 |
|
Behavioural desensitization |
0 |
0 |
1 |
1 |
Behavioural strategies were the most commonly (56%) and successfully (89%) used method. Eight mothers went into school to help their child, usually using behavioural stimulus fading and shaping techniques to enable the child to speak to a widening range of people. Two families had deliberately changed school, to a smaller and more supportive environment, with positive outcomes, facilitating speech.
Communication patterns
The confidence of the young people about speaking in the home, school and public situations was explored by asking them to indicate how often they could talk in those settings.
The presence of close family, friends and relatives made speaking feel easier for the young people both inside and outside the home. For some, speaking was harder when visiting the homes of relatives or friends. In school, more were able to speak to friends than to teachers or support staff. In public, speaking in shops was easier than in any other setting. School, college and places outside the home presented the greatest difficulties, as did strangers, direct questioning or pressure to speak. Three who were able to speak in most places considered themselves to have recovered from SM.
Helps and hindrances
Family and friends were considered most helpful by the young people, who also appreciated their efforts:
Alicia (10 years)
‘My Mum invited, one by one, ten girls in the class to play, and then she would ask the girl to sit behind the bed whilst she asked me how to say, for example, dog in Serbian. I felt embarrassed, but after I had done it, pleased.’
Adam (10 years)
‘My Mum took me into class after school to talk in Year 2. She showed my story to the teacher. She invited friends home weekly. Having my good friend in the same class helped me a lot.’
Brian (10 years)
‘My Mum quit her job to look after me. I have a lot of play dates and met up with a lot of friends after school.’
Eleanor (17 years)
‘My Mum and I went out shopping or somewhere every weekend. Gradually I did more and more speaking to people. I did things very slowly that I would never have done before. I feel a lot better and I’m heading in the right direction now.’
Some school staff were also well regarded, as were speech and language therapists and a few psychologists. However, 40 per cent of respondents found school staff to be unhelpful:
Harriet (14 years)
‘My tutor. He got me to shout his name as loud as I could and said, “I am not letting you go until you actually shout.” I felt humiliated and when I tried to shout, my throat tightened.’
Other respondents also identified pressure to speak and lack of understanding from peers and adults as unhelpful.
Personality and character
The personality characteristics most commonly mentioned in other studies on SM included ‘shy’, ‘withdrawn’, ‘anxious’ and ‘stubborn’.
The young people in this study described their personality in their own words. ‘Shy’, ‘quiet’, ‘introvert’, ‘unconfident’, ‘anxious’, ‘nervous’ and ‘sad’ were mentioned, but by far the majority of descriptors related to positive attributes, such as ‘sensitive’, ‘thoughtful’, ‘caring’, ‘kind’, ‘helpful’, ‘friendly’, ‘sociable’, ‘talkative’, ‘fun’, ‘humorous’, ‘bubbly’, ‘laughing’, ‘happy’, ‘creative’, ‘artistic’, ‘studious’ and ‘sporty’.
Nine of the respondents identified ‘introvert’ and ‘extrovert’ qualities in themselves:
Harriet (14 years)
‘At home with close family and friends I am: loud, stroppy, happy, sociable and chatty. Outside I am: quiet, anxious and self-conscious.’
The only one to describe herself as ‘stubborn’ was Eleanor (17 years).
The parents also chose personality descriptors for their children. Again, although ‘shy’, ‘quiet’, ‘introvert’, ‘anxious’, ‘nervous’, ‘worried’ and ‘unconfident’ were mentioned, they were far outweighed by more positive descriptors such as ‘kind’, ‘thoughtful’, ‘helpful’, ‘loving’, ‘loud’, ‘sociable’, ‘confident’, ‘honest’, ‘funny’, ‘sensitive’, ‘perceptive’, ‘creative’, ‘curious’, ‘hard-working’, ‘polite’, ‘wise’, ‘self-assured’, ‘happy’, ‘spirited’ and ‘talkative’. Parents also identified traits such as ‘strength of will’, ‘determination’, ‘self-criticism’, ‘perfectionism’, ‘a preference for structure/order’ and ‘control’. Only three parents used ‘stubborn’.
Emotional responses such as ‘anger’, ‘frustration’, ‘aggression’, ‘moodiness’ and even ‘depression’, displayed by the young people, also featured in the parent’s replies:
Mother of Samira (11 years)
‘At school, very frustrated and she brings the frustration home. This can change into anger/aggressive behaviour, banging doors, etc., shouting, saying hurtful things.’
The frustration of remaining silent during the school day may account for the emotional outbursts and oppositional behaviour noted in this and some other studies (Ford et al. 1998; Steinhausen and Juzi 1996).
The contrasting characters displayed by these young people within and outside the home were also identified by parents.
This evidence of the range of personality characteristics displayed by these particular young people challenges the general perception of those with SM as stubborn, manipulative or merely shy.
New findings
This study added new findings to the SM literature.
Communication strategies
The young people provided evidence of their use of communication strategies, since all but one used non-verbal and 80 per cent used verbal methods. Table 3.3 analyses their responses.
TABLE 3.3 COMMUNICATION STRATEGIES AND RECIPIENTS |
|||||
|
Teacher |
Classmate |
Relative |
Friend |
Totals |
|
|
Gesture/pointing |
20 |
16 |
14 |
10 |
60 |
|
Writing |
20 |
9 |
4 |
4 |
37 |
|
Whispering |
14 |
12 |
6 |
9 |
41 |
|
Drawing |
6 |
5 |
3 |
4 |
18 |
|
Symbol card |
8 |
1 |
2 |
1 |
12 |
|
Tape-recording |
8 |
1 |
9 |
||
|
Message card |
4 |
2 |
6 |
||
|
|
4 |
1 |
3 |
6 |
14 |
|
Sign language |
2 |
1 |
1 |
1 |
5 |
|
Other (speak quietly) |
1 |
1 |
1 |
3 |
|
|
Other (talk through friend) |
1 |
1 |
|||
|
Social network |
6 |
6 |
5 |
17 |
|
|
Computer instant messages |
5 |
3 |
8 |
16 |
|
|
Mobile texts |
2 |
6 |
6 |
14 |
|
|
Telephone |
5 |
4 |
9 |
||
|
Webcam |
2 |
2 |
|||
The most common strategies used were writing, gesture/pointing and whispering. Some strategies were used for specific groups, such as tape-recorder with teachers or telephone with relatives and friends. Mostly, though, a range of different strategies was used with each recipient, demonstrating the determination and ingenuity of the young people in finding methods through which to communicate.
Using techniques such as whispering, audio or video recording and telephoning may be an important stage in the recovery process. However, if the child persists in whispering, then strategies should be employed to increase the volume of speech, in order to avoid possible damage to the vocal cords.
Electronic communication devices were used by 70 per cent and have helped young people with SM to develop their social relationships. For example, two 17-year-olds, Anita, with moderate SM, and Arabella, who had severe SM, used webcams to communicate with their friends.
Paradoxically, technology that distances the speaker from the listener may actually facilitate communication for someone with SM, by reducing the anxiety they experience when face-to-face.
Effects of having SM: school
At school, 80 per cent of the young people thought SM had affected their ability to participate fully in educational and social activities. However, 17 per cent thought SM had not affected them at school and one respondent gave no information.
Martin (11 years)
‘I can’t be myself.’
Simon (13 years)
‘When I know the answer but cannot speak to answer the teacher. I cannot work so well in a group, when I would like to.’
Harriet (14 years)
‘I find it hard to socialize and people think I’m a freak because I don’t speak much. If I don’t understand something, I’m too scared to put my hand up and ask a teacher.’
Arabella (17 years)
‘I could not speak in school except for with one close friend. The inability to communicate made me feel vulnerable and fear limited my progress, as I never felt able to express myself in my work. I missed many days when I was too scared to go in.’
Horatia (18 years)
‘I couldn’t do a lot of subjects, so I had to drop them and I only did three GCSEs. Also I didn’t make any friends.’
Two respondents thought SM had not affected them at school, because they had friends, were clever and worked better than others who were always chatting.
The parents confirmed the young people’s evidence and revealed that, for 53 per cent, having SM had restricted their learning, progress and options. However, 47 per cent had made good academic progress, despite the limitations of SM, mainly through the support of school staff. In this sample, there was no correlation between severity of SM and academic progress.
Effects of having SM: public/social
Outside school, 70 per cent thought SM had affected them socially, but 27 per cent thought it had not, whilst one respondent gave no information.
Alison (10 years)
‘Not talking to certain people; not going to certain places, for example pictures, swimming. I am sick when worried in certain situations.’
Kerry (12 years)
‘If I didn’t have SM, I’d be more confident and be able to go places and do stuff and have fun.’
Robert (13 years)
‘Unable to join in social activity with friends or buy things in shops. Fear of being spoken to when outside the house. Getting lost and unable to ask for directions.’
Emma (17 years)
‘I become very anxious when seeing people I know from school outside of school. I am unable to communicate very well with sales people, waiters, etc.’
Horatia (18 years)
‘I don’t go out much. I just stay home and play on my computer.’
Two respondents thought SM had not affected them socially, because the dancing and sporting activities they enjoyed did not require them to speak.
Again, the parental responses corroborated the young people’s experiences. They also revealed that 73 per cent were able to speak to friends in the home, but 27 per cent were unable to do so, being severely affected by SM.
Effects of having SM: home/family
In the family situation, 53 per cent of young people thought SM had affected them, but 40 per cent thought it had not, while two respondents gave no information.
The answers from both parents and young people revealed the impact of a youngster with SM on the household:
Esther (11 years)
‘For a long time I wasn’t able to speak to uncles and aunts.’
Esther’s mother
‘A lot of stress on us as parents, especially before we found SMIRA.’
Kerry (12 years)
‘I can’t talk to certain people in certain situations and it’s embarrassing.’
Kerry’s mother
‘Not always been easy mixing with others as I feel like I have to look out for her all the time to be her voice.’
Anita (17 years)
‘I can’t talk to some of family, even close. They may feel upset.’
Anita’s mother
‘Feeling uncomfortable for other people when situations arise and feeling I should apologize for what appears like rudeness.’
Sarah (17 years)
‘I don’t talk to most family members, so it stops me having a closer relationship with them.’
Sarah’s mother
‘It has been very hard to understand and help her in the early years. As she got older she could tell us how it was affecting her. Getting information and help from others and online has been very useful to us to try and support, help and understand how to deal with SM and how Sarah deals with each day. We are seeing signs with Sarah in her confidence and try not to push her.’
Other parents also identified ‘stress’, ‘worry’, ‘frustration’, ‘lack of understanding’ and ‘judgement from others’ as issues for them.
Mother of Alicia (10 years)
‘Lots of stress, worry, constant involvement with school Special Educational Needs Co-ordinator and Speech and Language Therapist (SENCO and SLT). I felt under constant pressure to help her, to do something. My personality changed for a period of time. It required enormous amount of patience. Hardly anyone can understand SM; most people think she can talk but decided not to. It is heart-breaking seeing your child in certain situations when she can’t speak.’
Mother of Moira (12 years)
‘In the early days we were naturally upset and concerned, a bit frustrated…many times we felt our family didn’t support us as grandparents just couldn’t get their heads around the situation.’
Mother of Petra (13 years)
‘We are worried that she is missing out on friendships and future work prospects. Our son is often asked why his sister doesn’t speak, which is difficult for him to answer.’
Mother of Isabelle (13 years)
‘We both feel a lot of judgement from others. Comments made by these people can be very hurtful and I think as an SM parent one’s own self-esteem can take quite a battering.’
Feelings
Of the young people, 83 per cent provided evidence for the emotional impact of SM on them. Five respondents gave no information. Table 3.4 details their responses.
TABLE 3.4 HOW DOES HAVING SM MAKE YOU FEEL? |
|
|
Number |
|
|
Frustrated, annoyed, angry |
8 |
|
Different, abnormal, stupid |
8 |
|
Left out, missing out on life |
7 |
|
Sad |
6 |
|
Lonely |
5 |
|
Wanting to be like others, talk to others |
4 |
|
Disliked, friendless |
4 |
|
Embarrassed, uncomfortable |
4 |
|
Anxious, worried |
3 |
|
Shy |
2 |
|
Upset, depressed |
2 |
|
Physical symptoms of panic |
1 |
|
Wanting to avoid school as it is scary |
1 |
|
Wanting to hide behind Mum |
1 |
|
Fine |
2 |
Negative emotions dominated their answers, but the desire to talk was also evidenced. Of the two who felt ‘Fine’, one had recovered, but one was still severely affected by SM.
Messages and advice
Asked what they would tell others about SM, 80 per cent gave responses, which fell into three categories. Their strongest messages to those without SM were:
‘I do want to talk, but can’t and don’t know why. It’s not a conscious choice.’
‘I’m not being rude, arrogant or awkward.’
‘I’m normal, not dumb or weird.’
‘It’s a disorder, it’s different, it’s hard.’
‘It’s not just a phase you grow out of.’
‘I would change if I could, but it’s difficult.’
‘It’s hard to speak or join in, due to lack of confidence.’
‘SM makes people frustrated and angry.’
Their advice to others about helping them was:
‘Don’t make us try to talk or do things; it makes us more anxious.’
‘Others need to ask if you want to join in activities.’
‘Don’t judge too quickly.’
‘Be patient and understanding.’
‘Keep talking to us.’
‘Encourage and support us.’
‘Make us feel normal.’
‘Make no fuss when we don’t answer.’
‘We’ll come round when we feel comfortable.’
Their messages to those with SM were:
‘Don’t worry or be nervous.’
‘You are not alone. There are people who understand.’
‘SM may be awful, but you can beat it and have a better life.’
‘There is always a way to communicate.’
‘Don’t be afraid to try and talk. It gets easier the more you do it.’
‘Try to whisper or murmur quietly to friends at first.’
‘Use SMIRA and The Selective Mutism Resource Manual.’
Implications
Their messages have implications for all who have to deal with them.
All professionals need to be better educated about SM and its treatment, as being faced with a silent child can feel threatening and frustrating.
The new evidence from these young people about
•the profound educational, social and emotional impact of SM on them
•their desire to speak but fear of doing so, and
•the way they assess their own characters
may increase our understanding of their motivation and personalities. Their messages about factors and approaches that helped or hindered recovery, and their willingness to use alternative communication strategies, should also inform approaches to treating them.
Early identification and treatment can result in good outcomes, preventing the suffering described by the youngsters and their families in this study (Elizalde-Utnick 2007; Johnson and Jones 2011; Roe 1993). Co-operation between parents and professionals is important for the successful outcome of any treatment programme.
Limitations and future research
This study examined the perspectives and experiences of some young people with SM and their parents from across the UK. Although relatively small and self-selecting, the sample size of 30 was a good number in the context of this rare condition and other SM research studies. Since more than half the sample were aged 10–12, the findings could also be applicable to younger children with SM. These findings would be enhanced by further research into the perspectives of those with SM over a longer period of time and at a younger age. All the families in this study have agreed to follow-up in the future.
Finally
The success of this project in attempting to give ‘a voice to the voiceless’ was confirmed by Hazel (15 years) in an e-mail when returning her questionnaire:
‘Thanks for giving me the chance to share my side of the story.’