CHAPTER 4
Setting up a Support Network
Selective Mutism Information & Research Association (SMIRA) – A Brief History
In Britain there is a long tradition of charities supporting parents of children with a rare problem. Selective Mutism (SM), previously known as Elective Mutism, is such a problem. Parents have had, and are still having, considerable difficulty finding knowledgeable professionals to support and treat their children, whose problem is that they speak fluently at home but remain silent with strangers in an unfamiliar environment. Though not speaking to their teachers and often not to peers, they are rarely troublesome at school and can easily be overlooked in a busy classroom, despite ongoing parental concern.
In this chapter we would like to describe why and how parents succeeded in setting up a charity to help their children, whose problems, often due to public ignorance, tended to be sadly ignored.
The story starts in Leicester, UK. Alice Sluckin was then a Senior Psychiatric Social Worker at the local Child and Family Guidance Service. In the course of her work she became interested in treating children suffering from SM, successfully using a behaviour modification approach (Sluckin and Jehu 1969; Sluckin 1977). After retiring in 1985 she also worked on a retrospective study of 25 SM children she had treated. Her findings were that those given behavioural programmes with parental support were more likely, on follow-up, to have improved, compared with those given standard school-based remedial programmes from visiting psychologists (Sluckin et al. 1991).
As Alice’s interest in SM children was becoming known locally, teachers and parents continued to consult her and refer cases to her after she had retired. This is how she came to be approached by Lindsay Whittington, who had been unable to obtain professional help for her selectively mute daughter, despite her best efforts. In 1992 Alice and Lindsay joined forces and started a local support group for parents of SM children and interested professionals. For the parents this was a great relief as they no longer felt isolated, misunderstood and on occasions blamed by teachers.
Parents from as far as Nottingham and Rutland joined the group, which met once a month in a Leicester city school. As time passed the parents became better informed about the condition and appeared less anxious – one of the great contributions of SMIRA. This undoubtedly had a beneficial effect on their children who, it became clear, needed encouragement and to be given time.
A charity is launched
The members of the Leicester Selective Mutism Support group, both parents and professionals, supported by Dr Nigel Foreman and Professor Martin Herbert of the University of Leicester Department of Psychology, were inspired by Lindsay Whittington’s enthusiasm for action, and began to think of how they could help all SM children more effectively. Setting up a registered charity came to mind. This, they hoped, would increase public awareness of the condition and also enable them to apply for funding in order to undertake specific projects in the future. With the help of a sympathetic solicitor, the Charity Commission was approached and a draft constitution was submitted. The name of the new charity was to be the Selective Mutism Information & Research Association (SMIRA for short) and the stated objectives in the proposed constitution were as follows:
1.To relieve sickness by providing information on Selective/Elective Mutism.
2.To support the children’s parents and caring professionals.
3.To advance education of the public by conducting research into the condition and making public the results.
On acceptance of the constitution by the Charity Commission, the Selective Mutism Information & Research Association became a registered charity on 30 March 1993. Alice Sluckin was voted Chair and Lindsay Whittington Secretary. Lindsay’s past experience as mother of an SM child who had been denied treatment was thought invaluable. She was also a person who showed initiative, perseverance and a great deal of enthusiasm for the cause, as well as having past secretarial experience.
In 1998, after affiliation with ‘Contact a Family’, it was realized that there was countrywide demand for information about SM, and the Secretary published SMIRA’s first newsletter which is now published twice a year and distributed to members. It contains news and reports from parents, as well as book reviews and answers to parents’ questions which relate to ongoing difficulties. As it was clear that countrywide ignorance about SM was a major problem, the committee decided to produce handouts giving information about the condition. The first, for professionals, was entitled ‘Selective Mutism in Children’ (1999, 2008) and the second, for parents, was entitled ‘Your Selectively Mute Child’ (2000). These were prepared by a chosen working party and contained factual information on SM and suggestions for strategies to be used in the home and at school. They were most competently edited by Victoria Roe, who was a teacher and at one time Special Educational Needs Co-ordinator (SENCO) and is now Deputy Chair of SMIRA.
The handouts continue to be available on request – free of charge and online – and are still very much in demand. They have also been translated into Japanese and French.
In 2002 Alice Sluckin, working jointly with Dr Rosemary Sage (then Senior Lecturer in Special Education at the University of Leicester School of Education), obtained a substantial grant from the (then) Department for Education and Skills to produce a 23-minute video/DVD entitled Silent Children: Approaches to Selective Mutism, accompanied by an 84-page informative booklet of the same name (Sage and Sluckin 2004); both were produced by the University of Leicester.
The video and DVD were completed with the help of parents and the University’s audio-visual department by 2004. Both the booklet and the video have had excellent reviews and were well received by professionals. For instance, the Social, Emotional and Behavioural Difficulties Association (SEBDA) were happy to promote the materials (Sluckin 2006a). They can be purchased from SMIRA and continue to be in great demand nationally and internationally. Like the handouts, they have been translated into Japanese and French.
In 2007, on receiving a grant from the Yapp Trust, which provides running costs for small charities, the committee was in a position to promote Lindsay Whittington to a part-time paid post as SMIRA Co-ordinator. By then SMIRA had 307 registered parent members and 35 registered professional members. Our charity also offered, at that time, a telephone helpline two evenings a week.
In 2000, as SMIRA was becoming nationally known, the secretary suggested setting up day-long National Parents’ Meetings in Leicester and by 2008 these had become established as regular events and are always oversubscribed. Members come from all parts of the country, bringing their children. We have also had parent visitors from abroad. While the parents are busily talking and listening to speakers, the accompanying SM children are encouraged to join supervised children’s playgroups. Parents have told us repeatedly that affected children particularly enjoy coming, as they find meeting other SM children therapeutic. In one boy’s own words: ‘It makes me feel no longer alone.’
This short extract from a report by Julie Brindley, one of our regular childcare helpers, herself formerly SM, will give an indication of the joy of these times:
After lunch we invited the young people to join in our music-making and singing session. We had a few percussion instruments that enabled us to be creative, noisy and I think harmonious. Two of the helpers provided us with piano music to play along to. They did a great job, as they had no sheet music but were able to play our requests as well as provide their own ideas.
I remember all too vividly how difficult it could be to go to a strange place…it helps me to empathize with all the young people who came and joined us on Saturday. It took a lot of determination, guts and selflessness to travel, enter the building and be alongside people in such a unique situation, so that parents and carers could attend the meeting.
Other SMIRA activities
There is no charge for membership but parents send voluntary contributions. One of our most successful enterprises was undertaken by members in 2008: this was an Awareness Campaign, suggested by Welsh members and very much supported by Lindsay Whittington. It was undertaken because Welsh members felt that many teachers were still unaware of how to deal with SM children. The campaign was also supported by the Welsh media and the Minister for Education and included production of a special leaflet, ‘Not everyone has the confidence to speak everywhere...’. This was written by parents and included an eight-year-old’s moving poem as well as a supporter’s attractive, colour illustration.
As part of her role as Chair, Alice has written informative papers for professional publications (Sluckin 2000, 2006a, 2006b, 2011). She has also collaborated with our Co-ordinator (Sluckin and Whittington 2009). We have been told that these have been influential and the work is being taken forward with our Deputy Chair (Roe and Sluckin 2014). It is significant that an early paper of Victoria’s (Roe 1993) has been widely appreciated, used and quoted.
In 2007 John Bercow MP, now Speaker of the House of Commons, was asked by the UK Parliament to review existing services to children and young people (aged 0–19) with speech, language and communication needs (SLCN). Alice Sluckin, representing SMIRA, was asked to be one of the ten members of the review’s chosen Advisory Group. John Bercow also visited Leicester and met parents of SM children. The Bercow Report (2008) revealed that services for children with SLCN are currently a ‘post-code lottery’ which cannot be allowed to continue. Hartshorn (2006) pointed out that children’s poor communication later carries a high, preventable cost to the nation, and our members can testify to this in terms of social exclusion, mental health and employment difficulties (see, for instance, APA 2013, p.196; Hilari and Botting 2011; Markham and Dean 2006).
A welcome event in 2010 that provided valuable publicity and renewed contacts for SMIRA was the award of an OBE to Alice Sluckin in recognition of her work for the charity.
SMIRA is a member of the Communication Trust, which is a coalition of about 50 voluntary and expert community sector organizations. The Trust launched the National Year of Communication in 2011 with former educational psychologist Jean Gross, CBE, as National Communication Champion for Children. This has encouraged activities designed to ensure that children’s communication development remains a national priority. Our Deputy Chair Victoria Roe attends their meetings. SMIRA is thereby involved in such matters as preparation of new legislation and codes of special educational practice.
In 2012 SMIRA participated in a local Afasic (Association for all Speech Impaired Children) ‘Voice for Life’ conference and Victoria gave a talk derived from her questionnaire-based research among SMIRA families (see Chapter 3) that was very well attended. When Victoria has delivered this talk at further Afasic conferences it has always been well attended, suggesting that the incidence of SM may not be as low as was once thought.
Internet presence
Our Co-ordinator, Lindsay Whittington, describes the road to the development of SMIRA’s website:
One particular aspect of parents’ meetings had been the sense of enjoyment parents felt at being in contact with others in the same position as themselves. SMIRA was asked if an arrangement could be put in place for them to have contact on a regular basis, possibly by e-mail. Therefore in 2004 a Yahoo! Group smiratalk, now defunct, was set up, allowing parents to communicate by e-mail within the group and access photographs and documents online for the first time. This group became a great success, offering mutual support for parents and direct access to SMIRA’s Co-ordinator.
In 2008, with assistance from parent members, SMIRA was able to take advantage of rapidly growing use of the internet and set up its own website. This allowed registered members to gain online access to the handouts and relevant publications and provided a forum, which replaced the earlier ‘smiratalk’, as a contact point for parents and other interested parties. This website operates today at www.smira.org.uk and welcomes visitors from all over the world, promoting international interest in SM. We are mindful, however, that not everyone has, or even wishes to have, access to the internet. This means that there are still some families who are potentially isolated, or who rely mainly on telephone contact.
Facebook group
With the increased general interest in social media, during 2011 SMIRA took the step of setting up a new group on Facebook. The group gained in popularity during 2012 and at the time of writing has around 1000 members, comprising parents, health and education professionals, teenagers and former sufferers from SM. Members are able to engage in online chat and support each other through shared knowledge and experience, watched over by SMIRA’s group administrators.
In 2013 a parent, who is also a primary school teacher with several selectively mute children in her school, posted:
I’ve commented several times about how much I love this group. I spent almost ten years dealing with my daughter’s SM without any support at all. It’s so nice to share our journey, all we’ve learned, and ask for support for the newer things we are encountering. It truly is a lifeline, and one I needed a long, long time ago. Thanks all!
Further developments
We have been glad to support several training days provided by Maggie Johnson on the basis of Johnson and Wintgens (2001). We have also been able to involve local professionals in training days of our own. SMIRA and some of its member families have been involved in several TV documentaries, radio programmes and newspaper articles about SM, which have helped to raise public awareness of the condition and its treatment.
Contributions have been made, in association with Maggie Johnson as a leading expert, to the ongoing revision of its recommendations by the UK National Institute for Health and Care Excellence (NICE) and the US Diagnostic and Statistical Manual (DSM-5). SMIRA is also contributing to the ongoing revision of the World Health Organization’s International Classification of Disorders (ICD 10) (WHO 1994).
A Scottish SM group has been established and is linked to SMIRA. Links have been established to other European support groups set up in response to local need using the SMIRA model. We also have connections to Knet, the Japanese internet SM Support Network.
SMIRA would like to acknowledge grants received over the years from:
•Her Majesty’s Government (then) Department for Education and Skills
•Rutland Community Foundation
•The Yapp Trust
•Voluntary Action Leicester
•Leicestershire County Council
•Leicester City Council
•Leicester Community Fund.
In 2013 it transpired that Beauty Queen Kirsty Heslewood, who had recently been voted ‘Miss England’, had at one time suffered from SM and had recovered by means of taking into school an old videotape on which she could be heard speaking. Letting others hear her voice in school seemed to have established her as a potentially communicative person. Kirsty, now completely free of SM, has volunteered to raise funds for SMIRA and was present in Leicester when the charity recently celebrated its 21st birthday.
Finally, we are extremely happy to have Dr Tony Cline, Professor Martin Herbert and Margaret Harrison, CBE (originator of Home Start) as our Patrons and the revered public figure Biddy Baxter, MBE (former editor of the famous BBC children’s TV programme Blue Peter) as our first President.