It is generally assumed that young children will become more confident speakers as they grow up and go to nursery and school. But as Sal McKeown reports, that’s not always the caseAccording to the UK charity SMiRA (Selective Mutism Information & Research Association), one child in 150 is likely to experience selective mutism (SM). This is not a high incidence disability but the figures suggest that at any one time a school will have a child who cannot speak in certain situations. SMiRA describes SM as ‘an anxiety-based mental health disorder’. Those affected are able to speak freely in familiar circumstances, such as with family in the home, but will remain consistently silent in others, perhaps exhibiting a blank expression or appearing ‘frozen’ when expected to speak.
What we know
The Selective Mutism Foundation in the USA points out that selectively mute children have no related learning difficulties and will talk and respond well in settings where they are comfortable and that some are able to speak on the phone because the face-to-face eye-contact is removed. Surveying forums around the world, the first impression is that there is not much known about the condition and a desperate need to find a ‘cure’. However, as different organisations share research and examples, certain key piece of information are emerging.
We can now say with some confidence that it often starts between the ages of three and six; that mutism is not linked to speech/language deficits, abuse or emotional problems; and that while the general figure is one in 150, it is three times as common in bilingual children.
In Israel, Ruth Perednik heads a treatment clinic for children with SM. Like many involved in this field, her interest was sparked by personal experience. She had just moved from Argentina to Israel when her four-year-old son, stopped speaking in kindergarten. She found the work of Maggie Johnson and Alison Wintgens especially useful and set about treating her son, both at school and at home. She researched the incidence of SM in immigrant families for her PhD at the Hebrew University of Jerusalem and found selective mutism was significantly higher in immigrants than in native families. She is the author of Still Waters Run Deep: A Complete Selective Mutism Treatment Manual. Based on 20 years of clinical experience it contains individual manuals for parents, teachers and therapists.
Research by Lorraine Carmody of the School of Clinical Speech & Language Studies at Trinity College, Dublin, Ireland identified ‘The Carmody Factors’: predisposing, precipitating, perpetuating. Children have an increased risk of developing SM because of genetic factors or a family history of excessive anxiety. Separation, trauma, starting at nursery, experience of bullying may precipitate selective mutism but it is likely to persist if children become socially isolated or find that they can convey messages non-verbally and so do not need to use speech.
Diagnosis and intervention
Without early intervention, SM may persist into adulthood. Melanie, who lives in the UK, is a case in point. She just talked to one friend at nursery who the staff used as a go-between. The problem persisted into school, but when Melanie was nine her mother saw a Channel 4 programme called ‘Help Me to Speak’ and recognised many of the characteristics being described. She contacted the family doctor who referred Melanie to Child and Adolescent Mental Health Services (CAMHS) who formally diagnosed SM.
Sadly because Melanie was diagnosed late her behaviour had become entrenched and she experienced further mental health problems including self-harming and depression. ‘Her SM is still present,’ her mother said, ‘but she seems to be coping a lot better having left her secondary school and is now attending college.’
This story is not unique. Generally throughout the world SM remains under recognised and forums in India and South Africa feature parents’ experiences and worries. Many are looking for a quick solution — something that will help their children be at ease and feel part of a group.
Brave Buddies is an intensive group behavioural therapy program in the USA that helps children with SM speak in school and other public settings. Using a simulated classroom, the program offers children a safe environment to practise ‘brave talking’ — perhaps talking on the phone to one person and then, with intensive support, building up to group talking. In some cases they offer drug treatments, including antidepressants or selective serotonin reuptake inhibitors (SSRIs).
Some countries avoid medication. There is little research on the effect of these meds on young children and the long-term effects or side-effects are unknown. Coming off anti-depressants sometimes results in another ‘downer’ that may exacerbate SM. SMiRA’s view is that although medication may be considered in order to relieve anxiety in older children/teenagers, it should always be used in conjunction with a programme of behavioural therapy when tackling selective mutism.
Phil Thomason is the father of three children. The eldest was diagnosed with selective mutism in 2007 after five years’ silence in school settings. He is the International Representative for SmiRA and has close links with European organisations such as Ouvrir La Voix in France and AIMuSE in Italy. SMIRA has also been helping a group of Polish parents and there are other parent groups in Japan, Australia, New Zealand, Belgium, Germany, the Netherlands and Portugal.
He has been delighted by the preventative measures that are in place in Germany where the kindergarten has a planned step-by-step approach during those first few critical days in child care. The approach is known as the Berlin Model and is aimed at all children entering kindergarten. It helps identify those who might react badly: ‘This approach was used with my two younger children in Germany,’ he says. ‘I only wish it had been used for my eldest in another country.’
Dr Elizabeth Woodcock has the challenge of geography to contend with. She set up the Selective Mutism Clinic, Sydney in 2006. The clinic offers a service to children in remote and rural areas, and provides telephone consultations to parents, instead of the usual face-to-face sessions held at the clinic. Staff also provide training by phone for classroom teachers every month. The techniques that will help children recover need to be practised many times each day and parents and teachers are the ones spending considerable time with the child. ‘The “school program” is essential, as the child’s mutism is generally strongest in that environment,’ she says.
There are barriers: ‘The phone consultations that we provide to families are not currently covered by our government health rebates (unlike face-to-face consultations), so the expense is much greater for our remote families. Unfortunately many families want or need to reduce the frequency of their sessions due to the ongoing costs, and this reduction in intensity usually means that treatment takes longer.’
Training is also difficult.The clinic runs seminars to train parents, kindergarten staff, school counsellors, learning support teachers and some speech pathologist. While there has been considerable interest in the training, not everyone can attend the seminars in person so they have been recorded and will be available on DVD in the next few months. See their website and the Selective Mutism Australia Facebook page for more information.
As well as behavioural support and drug therapies, technology has a role to play. Michael Jones is a speech and language expert and co-author with Maggie Johnson of Supporting Quiet Children. Their research on using computer software to develop and support confidence in speaking looked at the possible role of two programs.
Choose and Tell from Inclusive Technology encourages children with learning disabilities to make choices and develop stories. The program is widely used in special education but is becoming increasingly popular for children learning English as an additional language.
A Swedish product Lexion was developed to support children and teenagers with difficulties with reading and spelling. An additional benefit has been that it can help to develop children’s confidence as speakers. The English version is now widely used in English speaking schools.
The program ‘speaks’ to the user, who is encouraged to repeat back words and phrases while being involved in fun exercises. Some practitioners have found that using Lexion in school has helped children who are anxious about speaking to become more confident as speakers, as well as improving their reading and spelling.
Augmentative and Alternative Communication (AAC) apps are also proving useful. There is anecdotal evidence, for example, of teenagers using Claro Software’s three apps: ClaroCom Free, ClaroCom Standard and ClaroCom Pro. All three have text-to-speech, word prediction, phrase banks and iMessage and email communication features but the Standard version includes high-quality voices and the Pro version adds more powerful editing, privacy and communication features.
However, the program most often mentioned in connection with SM is Proloquo2Go.
It is proving to be useful for 15-year-old Ellie, as her mother explains:
‘From the day she could talk she’s not used her voice to people outside of our immediate family. Ellie is mute at school, with family we don’t see much, if people she doesn’t know talk to her when we are out, any family friends, basically anyone she doesn’t see as secure and completely trustworthy.
Proloquo2Go has definitely been a learning curve for all involved with Ellie – us, her carer, school staff and friends. She needs full prompts, and an easy grid to use so there’s not a lot to press which helps reduce her anxiety levels. Also I can see the history on how she has/hasn’t communicated in the day.
Using the app has given Ellie an understanding that she has a voice, she can be listened to and has choices. This is still an ongoing exercise with Ellie, and will be for a long time I think.’