Written evidence submitted by Selective Mutism Information and

Research Association (SMiRA)

(SFC0022)

Performance of the System

1.1  SMiRA is the main national charity within the UK providing information and support to people with SM, their families and professionals working with them.  We currently have over 24,000 members of our Facebook groups, the majority living within the UK.

1.2  Selective Mutism (SM) is an anxiety-based mental health disorder which usually commences in early childhood. Those with SM speak fluently in some situations but remain consistently silent in others. They may have a blank expression or appear ‘frozen’ when expected to speak.  Selective mutism is a frequently misunderstood and little known condition which can have a significant impact on young people’s lives. How common SM is, has not been fully researched but it is not especially rare, affecting approximately 1 in 100 primary school aged children.

1.3 Although there is a paucity of research in this area, there is emerging evidence that many children with SM may also be autistic or have co-existing conditions such as ADHD, other anxiety disorders or learning difficulties. 

1.4   In an online parental survey conducted by SMiRA in the summer of 2024 on the experiences of children with Selective Mutism (SM) in the UK (N=264:  201 with a diagnosis, 63 suspected/awaiting assessment, 235 England, 11 Wales, 14 Scotland, 4 NI) the following was found:

• 45% of parents whose children had a diagnosis of SM found it difficult or somewhat difficult to get this diagnosis, of the remaining percentage a number had to go private to get the diagnosis. Some children were initially identified only as autistic and all their difficulties ascribed to autism; however, SM should be diagnosed separately where it co-occurs. Waiting list times were very long for diagnosis.
• 62% of children with a diagnosis of SM in the survey were also autistic or waiting for autism assessment on a waiting list, 19% had ADHD and 16% other conditions in addition to SM.
• 48% of parents (N=254) said their child was poorly or very poorly supported by their school, with 30% saying well or very well, the rest being neutral on this question.
• 55% said support from professional services external to school was poor or very poor, with only 17% saying they were supported well or very well. 

1.4  Where children with SM are supported by EHCPs, the system does not work well for them, as best practice intervention for SM requires changes to the way all school staff communicate and behave with the child, and changes to the whole school environment to reduce the child’s anxiety, alongside therapeutic relationship building or small steps interventions overseen by a trained professional. Use of generic individual TA support in class is not generally effective.  The EHCP system as it stands is not flexible enough to respond properly to the needs of a child with SM.

1.5  SM is not included in the training for teachers or wider support services (educational psychology, clinical psychology, Thrive in education, some SALT courses) in many cases.  This results in many parents struggling to find informed professionals and having to seek support privately.

1.6  There are no statistics gathered in UK education or health systems on SM to help inform practice.  The statistics on SEN in English schools have a very small number of categories for schools to identify needs and there is no clear main area under which SM must be placed (eg SEMH, communication and interaction). This makes it problematic for schools to decide where to record children with SM, and impossible to track its frequency of occurrence across the country.

Overall Picture of the Support Available and outcomes achieved for those with SEN.

Anecdotal evidence from SMiRA’s Facebook groups (with over 20,000 members, most of them affected families) plus the evidence from the questionnaire above indicate that:

2.1  There is a real lack of awareness and understanding of SM in schools and external support services, including health and education services.

2.2  There are very few clear care pathways, with schools not knowing who to go to for external support for children with SM, even where the school has identified the need.

2.3  Because of limited general understanding and awareness of SM, many families experience dismissal of their concerns by schools; the child’s difficulties are misunderstood or trivialised or the parents blamed e.g. the assumption that the child is just shy and will grow out of their difficulties, that parental anxiety is the cause of the child’s issues, or that the child has been abused.

2.4  Parents frequently report difficulty in getting schools to support the child’s needs, with stress and distress being caused to parents (and often the whole family as a result), whilst managing school interactions and liaising with teachers and staff.

2.5  Children with SM are generally quiet, withdrawn and not disruptive and so may not be noticed as having a problem in school.

2.6  The limited professional time available (e.g. SALT, Ed psych) will more often be concentrated on children with disruptive behaviours or clear learning needs, leading to children with SM being overlooked for timely support.

2.7  Some schools do not refer children with SM to external support services or use EHCPs as they often appear to be coping academically, especially in the earlier years of school, despite not being able to communicate verbally. However, we are aware that SM that persists into teen years and adulthood seriously and significantly impacts independence and life skills development.

2.8  Parents report lack of access to appropriate and timely interventions leading to a worsening of the child’s condition over time.

2.9  Children and young people with SM are often unable to express basic needs (toilet, hunger, pain) in public or at school, causing them stress and, over time, often a trauma reaction to school.

2.10          The Inability of children and young people to ask for help or participate in class, affects grades, friendships and learning.

2.11          This can frequently lead to the stress response overwhelming coping skills, particularly in late primary or early secondary school, often leading to Emotionally based School avoidance (EBSA) due to anxiety. This obviously impacts life chances, attendance and performance.

2.12          Key transition points can provide opportunity for children and young people with SM to progress (some youngsters are able to speak in a new setting where they believe there are no preconceived ideas about them as a communicator), but they are also for some a point of exacerbation of their difficulties.

2.13          Most youngsters with SM have limited access to extracurricular activities.

2.14          School staff may assume a silent child is being deliberately difficult or that they will grow out of SM without intervention.  However, it is known that children are unlikely to grow out of SM without interventions, and that SM is most effectively treated in young children. If left untreated it will often persist into teenage years or adulthood with increasing likelihood of the development of other mental health disorders, reduced attainment and life chances.

2.15          Many young adults with persisting SM present with emotionally based school avoidance (EBSA) and, after school, are often NEET as they are unable to undertake job interviews or interviews for further training.

2.16          There is a lack of clarity on outcomes as it is difficult to track children with SM due to a lack of statistical recording. 

2.17          Many families known to SMiRA including those of SMiRA Trustees, have adult children who still have SM and are reliant on the benefit system and PIP, have been unable to achieve their potential academically, are unable to work, are isolated from friendships and society and who still require continued support from their parents and families. They are frequently unable to access mental health support on the NHS since in general only talking therapies are offered which are inaccessible to people with SM.  This situation is often avoidable with timely intervention in early childhood. The “best-odds” chance for a full independent life is where early and timely intervention by informed and trained professionals has been given in the place where SM occurs, which is usually in places outside the home, very often school.

Government action to create a sustainable SEN system and restore confidence.

3.1  A repeated issue for those using SMiRA’s Facebook page is that there is no clear remit for support for SM, with responsibility for intervention not falling on any clear professional body and SM often falling between the remit of speech therapy, educational psychology and CAMHs, but often with no agency commissioned or even in an informed position to offer the right sort of help. There is a need for a clear pathway where a named agency has responsibility for support and intervention of any child with suspected SM from a very early age.

3.2  Alongside this, school staff, especially those in EYFS, should learn about SM in initial training and in teacher training, so they can recognise the signs and seek timely advice.  SM is best treated in the environment in which it occurs. 

3.3  Currently even where they do recognise that a child might have SM, schools do not know who to turn to, which is made worse by different commissioning rules existing across England. 

3.4  It is SMiRA’s belief that there should be a national care pathway with a designated lead service but with multiagency working according to the needs of the child.  Speech and language therapists often work in a way well suited to children with SM so should not be excluded from working with them, whilst psychology-based services should not be excluded either due to SM being an anxiety disorder and the complex nature of SM and its overlap with neurodiversity.

3.5  Trustees of SMiRA would be happy to meet and discuss these matters in more detail should the committee wish for further details. We welcome the opportunity to represent this voiceless community.

Shirley Landrock-White:  SMiRA Trustee, Teacher, Parent of an adult with SM. 

Claire Pickford-Carroll:  SMiRA Trustee, Educational Psychologist, Parent of an adult with SM. 

SMiRA (Selective Mutism Information and Research Association) Registered Charity No. 1022673

November 2024