[Posted on 15 January, 2020 by Eva Kocovska]
A puzzling and unexpected pattern of behaviour recognised as a real phenomenon not a child’s voluntary stubbornness or rudeness
The condition is a relatively rare emotional disorder occurring in childhood with a puzzling and unexpected pattern of behaviour that was, until recently, widely misunderstood. The German physician Adolf Kussmaul in 1877 used the earliest term ‘aphasia voluntaria’ to describe the disorder, meaning ‘voluntary lack of speech’. The term ‘elective mutism’ was first coined by the Swiss child psychiatrist Moritz Tramer in 1934.
Previously, the silence of these children was regarded as pure contrariness, manipulation, stubbornness or deliberate rudeness, however during the 1960s clinicians and researchers started to view it differently. Among the first was Alice Sluckin, OBE a senior psychiatric social worker in the Child Guidance team in Leicester, UK.
Alice looked like an ordinary fairy-tale grandma, however there was nothing ordinary about her life. Born to a German speaking Jewish family in Prague, Czechoslovakia, in 1919, the then newly independent state born from the collapse of the Austro-Hungarian Empire following the First World War. Her father was an Austrian citizen, and Alice’s family’s old Prague ancestry dated back to the 17th century. Her mother Mira was Polish, her nanny was Czech, and as a little girl she was sent during the summers to her Polish grandma to learn the language. Thus she was effectively growing up in a trilingual environment. Her father – Otto Klaus – was a medical doctor and Alice, too, wanted to study medicine. By the time she was supposed to enrol the year was 1938 and the Jews were by then prevented from entering university- even in Prague (after the Munich conference). Alice was a very energetic, practical, down to earth and enormously resourceful person and already at a young age demonstrated this collection of qualities. She found a nursing course in England and wanted to try this route. She enrolled in January 1939 in the Children’s Hospital in Southampton, and English thus became her fourth language to acquire.
Tragically, on 15th March of that year, after the annexation of the Czech part (Bohemia and Moravia) of Czechoslovakia by the Nazis into the German Reich, she became a refugee overnight and never saw her family again as they perished in the Holocaust. Later she was expelled from Southampton as a potential ‘Nazi spy’. Alice then worked during the war as a waitress in the evenings and studied at Leeds University and qualified as a social worker. She got a job in Cambridge as a billeting officer for wartime evacuees, their families and called-up workers. This is where Alice met, and in 1942 married, her Polish husband Wladyslaw Sluckin, who later became a professor of psychology at the University of Leicester and Editor of the British Journal of Psychology.
After gaining a Certificate in Mental Health from the London School of Economics (1945-46) for most of her career Alice worked as a psychiatric social worker in Cambridge, London, Durham and later in Leicester, and she published in several different areas i.e. autism, maternal bonding, physical and emotional abuse, soiling, child and adolescent psychological issues, and selective mutism.
A couple of factors possibly played a role in Alice specialising in the subject of SM: Leicester, a city with the second largest Indian population in the UK after London, presumably a greater incidence of SM within this minority population and Alice, a multilingual child herself and later a refugee, possessed particular sensitivity and understanding to the distress of these children and occasionally adults, who were unable to speak in situations where they felt unsafe.
Drawing on her own knowledge of psychology, Alice started using various behavioural techniques to help these children into talking (Sluckin, 1969; 1977; 1991). This behavioural approach has provided the foundation for a great deal of the work done by other professionals in the field of SM.
Alice was one of the few people in the 1960s to recognise that the real cause of this disorder is, in most cases, the particularly disabling form of anxiety, later supported by Johnson & Wintgens (2001) and Cline & Baldwin (2004). Alice also considered the term ‘Situational mutism’ as better fitting. Later several groups of authors started using the term ‘selective mutism’ (Reid et al., 1967) without explicit explanation, but the term was adopted by the American Psychological Association (APA) in 1994 as Anxiety disorder.
In our culture ‘silence’ represents rejection and can potentially trigger a response of frustration, anger and hostility and/or rejection and isolation. As a result, the child becomes entrenched in this vicious circle of anxiety and fear. When blame is removed and the behaviour is not considered a deliberate intention or even rudeness, one can employ optimal approaches.
The silence is not considered children’s conscious decision anymore, some are believed to be unable to activate their voice while ‘frozen’ in a state of terror, some can achieve communication non-verbally, by drawing or carrying short messages on cards or miniature recording devices. And majority express their wish to be able to communicate. This shift was significant and formed a basis for successful approaches to treatment.
No single cause has been established; research points to the presence of genetic factors (Cline & Baldwin, 2004) and similar behavioural traits are commonly present in the family while innate childhood temperament also plays a role – i.e. timid, behaviourally inhibited (Kagan & Snidman, 2004). An international research findings suggest that girls are more likely to have SM (Steffenburg et al., 2018); children with learning disabilities and very bright children can equally be affected; speech delay is a significant risk factor for the causation of SM (Kolvin & Fundulis, 1981); and it is more prevalent in ethnic minorities (Cline & Baldwin, 2004) and among twins (Wallace, 1986). Additional factors are isolated living, unsettled home background and frequent moves.
The most widely accepted diagnostic definition of SM is the fact that a child is known to speak confidently in some situations, while remaining consistently silent in others. These children speak freely with close family members, usually in the privacy of their home but they do not speak in unfamiliar environments to people they are not related. Reversed rare cases were also observed of a child talking in school and silent at home.
The child should be referred to a Speech and Language Therapist (SLT) and psychologist so that cognitive, neurological and medical problems can be excluded, possible co-existing conditions explored and the multi-agency approach should be initiated. In addition, it is also necessary to rule out that a child is not in his/her first term at school or in a new country in the first 6 months of learning a new language.
A multi-agency approach is considered the most beneficial as SM challenges professional boundaries: does the classroom environment make children feel uncomfortable or even threatened? Does the child have a specific language impairment or mental health issues? Is English not the child’s native language? Does the silence stem from trauma, abuse or fear of disclosing some dangerous information/secrets? Detangling these questions and frequent accompanying comorbidities requires a range of specialist expertise (educational psychology, child and adolescent mental health, social work and SLT, etc.) as some of the symptoms overlap with, for example, autism spectrum disorders (ASD) and/or other social phobias etc. An overlap of SM with ASD has been reported and the concept of the ESSENCE approach advocated by Gillberg (2010) is considered highly appropriate for early diagnosis of SM (Gillberg, 2010; Smith and Sluckin, 2015).
Up until the 1950’s treatment of SM was influenced by misleading psychodynamic interpretations, blaming the mother-child relationship but ignoring the child’s inability to speak with strangers. At the time it was not understood that the child, by staying silent, was avoiding being devastated by an overwhelming feeling of anxiety. During the 1960s there was a radical shift, first in understanding SM as learned in vulnerable situations, resembling other social phobias, fears and avoidance disorders that could be unlearned and thus there was subsequently a radical shift in treatment of SM too toward behavioural modification.
From 1961, Alice worked as a senior psychiatric social worker in the Child Guidance team in Leicester, collaborating with educational psychologists, child psychiatrists and remedial teachers. Alice was among the first pioneering a brand-new treatment approach based on principles established in experimental psychology, known as behavioural modification of problem behaviour. Since around 1985, gradually and systematically through gathering her valuable experience and through careful experimentation with behavioural techniques combined with the use of play-, speech-, family-, art- or music-therapy Alice became a sought after and trusted expert in the field and the behavioural therapy became an effective treatment of choice.
Another crucially important element of Alice’s success in dealing with clinical cases was that she started seeing the SM children – previously seen mainly in clinics – in their homes. This and her enormous respect and empathy for the parents and a child in front of her, created a strong springboard for the treatment procedure that followed.
When Alice was presented with the Sir Sigmund Sternberg Active Life Award in 2012 its nomination paper stated: ‘Alice’s strength lies in her gift for collaborating with professionals and non-professionals alike and in viewing parents as partners. Her actions are grounded in common sense and a deep humanity.’
Among various behavioural techniques Alice incorporated was her talking parrot – equipped with a hidden tape-recorder – which was ‘so clever’ to repeat whatever the child said or whispered to him in any language (see photo above by courtesy of P. Kočovský). Nowadays advances in technology radically change our approaches to early intervention and mobile devices are being used to, for example, film a child talking freely at home and show this in school (Smith and Sluckin, 2015).
Techniques to reduce the child’s crippling anxiety are of crucial importance – slow breathing, muscle relaxation, etc. Among very successful approaches are school-based programmes, which rely on ‘small steps’ and gradual exposure of the child to anxiety-provoking situations (Johnson & Wintgens, 2001). The earlier the treatment starts the greater the chances are for recovery.
Why selective mutism matters?
Although SM is one of the milder speech and language disorders, when untreated it can severely interfere with the child’s social, emotional and cognitive development and therefore it should not be ignored. SM has significant consequences on a child’s life: it negatively impacts learning; impairs development of social skills; it often leads to exclusion and/or bullying, to difficulties in personal relationships and emotional difficulties; it can diminish employability and result in subsequent severe mental health problems (Smith and Sluckin, 2015).
When Alice retired in 1985 at the age 66 and having sadly lost her husband around that time, she focused her efforts and irrepressible energy on children with SM and their families and worked tirelessly on this new project of her life on a voluntary basis for more than three decades. On her initiative, when she brought together (in 1992) a number of Leicestershire parents and interested professionals for a meeting and exchange of information and ideas, the registered charity Selective Mutism Information and Research Association (SMIRA) in Leicester, UK was founded and Alice became its founding member (Registered Charity in 1993). At first this operated locally, but soon became a national and also international organisation. Alice also advised on the process of setting up similar groups in Japan and Norway. Contacts with the German SM Group, Mutismus Selbsthilfe Deutschland e.V., were also initiated.
Alice also became a Fellow in the School of Psychology and the School of Education at the University of Leicester and in 2008-10 a Member of the governmental Advisory Group of the Bercow Committee reviewing services for Children and young people with speech, language and communication needs (SLCNs).
On 1st January 2010 Alice received the Order of British Empire OBE from the Queen for over two decades of her voluntary work with parents and children (see above by courtesy of A. Sluckin’s family archive).
In order to summarise all her knowledge, experience and carefully collected research results, at the age of 96 Alice published a book in collaboration with her colleague on selective mutism: Tackling selective mutism: A guide for professionals and parents (Smith & Sluckin, 2015). She never truly retired; even on the day of her passing away on 15th February 2019 she had a work meeting scheduled which, sadly, could not be held.
Alice would have celebrated her 100th birthday on 21st July 2019. Her voice will not be heard any more but, fortunately, her legacy is going strong in the form of her charity SMIRA and her seminal publications, including the last one: ‘Tackling selective mutism: A guide for professionals and parents (Smith & Sluckin, 2015).
Alice will be remembered not only by her family (now growing wonderfully into its fifth generation), friends and acquaintances, but also by the countless individuals and families whom she helped over the course of her long life. The children with selective mutism (SM), in particular, and their families will remember her as an advocate for their problems, which became Alice’s focus of the last four decades of her life.
In an extraordinary feat this unassuming yet brilliant lady – Alice Sluckin OBE – managed to help move the condition once known as ‘Aphasia Voluntaria’ to a widely recognised disorder of speech in the psychology and psychiatry fields.
[This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.]