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A programme on Selective Mutism called Finding your voice was broadcast on BBC Radio 4 on 10th February 2015 and is now available on BBC iplayer radio. Finding your voice was presented by Helen Keen, comedy performer and broadcaster, who, herself, suffered from Selective Mutism until her early 20s. For further information see http://www.bbc.co.uk/programmes/b051s0fm.

For listeners overseas, Finding your voice will also be broadast on the BBC World Service on 9th March 2015 at 19:30 GMT. For further information see http://www.bbc.co.uk/programmes/p02l40fl.

Would you like to take part in Selective Mutism research?

We are currently advertising two research studies on Selective Mutism:

Catherine Mohaghan from the University of Cumbria, UK (s1200144@uni.cumbria.ac.uk) is looking for parents of children with SM to complete a questionnaire, as part of her Occupational Therapy degree, exploring parents' perspectives of their childrens' occupational performance and engagement.

Jessica Riley of Liverpool Hope University, UK (122003019@hope.ac.uk) is looking for parents of children with SM to complete questionnaires as part of her Education with Early Childhood degree. The research is about provision of services for Selective Mutism and whether more awareness of this condition is needed.

Take part in both of these studies here

What is Selective Mutism?

Selective Mutism (SM) is a severe situational anxiety disorder which affects both children and adults. The condition generally starts in early childhood but can, if not treated early enough, continue into adulthood. Children and adults with SM are often fully capable of speaking (though many have masked speech problems / delays), but cannot speak in certain situations because they are phobic of initiating speech.

As a phobia of communication, a child or adult with SM will be mute (it is an instinctual response which can feel inexplicable even to himself / herself) in the presence of a given collection of people or indeed an individual person. The pattern of speech-related anxiety varies depending upon the person's life-experience. The pattern can be quite general - encompassing the whole school environment. Or it can be more specific - for instance with a grandparent, parent or step-parent. As such, role can, sometimes, be involved. Or it can be a complex mixture of both.

The mean age of onset of Selective Mutism is between 2.7 and 4.1 years of age, which is long before the mean age of onset of Social Anxiety Disorder, which generally develops during adolescence. SM often first becomes apparent when a child enters a communal environment outside the family home for the first time - for instance when a child begins playgroup or school. While SM has a very early mean age of onset, sometimes SM (either absolute silence or extreme reticence) can last for a child’s entire time at school - until the day they leave at 16 or 18. Generally, but not always, it contributes to academic underachievement, school refusal, and a torrid school life, etc. despite children with SM often being of 'above-average intelligence'.

School is not the only situation in which muteness can occur, however. SM being an education-only issue is a stereotype, thus incorrect. Many children (including those primarily mute at school) may also not be able to talk to certain relatives (e.g. grandparents or aunties or uncles etc.) In rarer cases, some children with SM may not be able to talk to their parents or step-parents either. This was the case for me.

Children and adults with SM do not choose to be silent in the situations in which they cannot speak. They genuinely cannot speak because attempting speech rouses too much anxiety. Almost all children and adults with Selective Mutism would love to be able to speak in every situation they cannot. They are not making their difficulties up, being difficult, rude, antisocial, or anything else.

Busting myths and stereotypes

As probably the least understood / least researched / most misunderstood anxiety disorder of all, there are many myths and stereotypes surrounding Selective Mutism.

Myth 1: Selective Mutism only affects young children

While SM ordinarily begins in young childhood it can persist, in much the same form, through adolescence into adulthood. SM often does not just disappear when a child reaches 18. My own research estimates there to be 20,000 adults in the UK alone - the vast majority of whom receive no support at all. There is a profound gap in mental health services for this condition - for not only adolescents with SM but adults too - not least because the severity of this condition is underestimated. One should remember that while SM in young children may seem to be quite innocuous and low-impact, Selective Mutism can develop into / contribute to serious psychiatric problems in teenage and adult life. Selective Mutism is best and most easily tackled when a child is young.

Myth 2: Selective Mutism is always caused by childhood mistreatment

There are many reasons for this anxiety disorder becoming embedded in a young person's life - including no reason whatsoever. The majority of parents who have children with SM are lovely people, who are as flummoxed by their child developing SM as everyone else. Many children with SM seem to be predisposed to developing anxiety. Many young people (males and females alike) also have sensory-processing issues, autism, and / or hearing or speech problems as well as SM. On the other hand many young people simply have SM on its own.

Myth 3: Selective Mutism is never compounded by a child's home environment

Like all anxiety disorders, Selective Mutism is due to a mixture of genetic and environmental factors (a so-called Gene x Environment interaction.) Obviously, as an anxiety disorder, it can be compounded by further anxiety arising in a child's home environment. Very few genetic studies of SM exist at this point in time. Likewise it is not known whether Selective Mutism can be triggered by environment alone. Nonetheless even if one were to take the extreme view, which, naturally, parents' organizations for SM do, that SM is entirely caused by genetics, it would still stand to reason that precisely the same proportion of children with SM experience environmental stressors as those that without SM. Otherwise one would be suggesting that there exists a statistical effect in the other direction - i.e. that SM comes about due to a lack of environmental stressors and / or having the perfect home life environment! Writing from my own experience (and having many such stories in my possession) I state that my home environment compounded my SM, making it much worse. Note, however, that my pattern was the opposite to the norm for this condition - being mute in my childhood home environment yet speaking (to an extent) elsewhere for a decade. In fact, my own research demonstrates that muteness in the home environment can be accounted for, to a large extent, by (a) autistic traits; and / or (b) factors in the home environment. Additionally, the longevity and decade-by-decade severity of the condition through adulthood depends upon contributing early / childhood life experiences, as my research demonstrates (download it here.)

Myth 4: People with Selective Mutism can't be mute everywhere all the time

Selective Mutism is a poor name for this condition. It should, perhaps, be called Situational Mutism rather than Selective Mutism. In fact all situations can eventually become triggers (as they were, for a period, for me.) Children and adults with SM don't wilfully 'select' those they are mute with. They have instinctual speech 'rules' about who can and cannot be spoken to that can last for years or even decades. The 'rules' sometimes have a tendency to spread, however, and some young adults with SM may eventually become mute in all situations because their system of 'rules' has, progressively, become so entrapping that they cannot face speaking anywhere or to anyone. In my own experience I had five different types of speech rule (which may well be recognisable by every sufferer of this condition): With certain people I was compelled (it was my instinct) to be mute every single time I encountered them; Those who had never heard me speak would never hear me speak, even if I had known them for years; With a few exceptions, anyone related or associated with anyone who I could not speak to could not be spoken to either; Those who did not know I was mute in other situations could never be allowed to find out about my muteness; and Those who only knew me as mute could not discover I could speak in other situations. Above all, one should realize that SM is far from simple and far from easy to escape. It can become a hellish trap!

What children and adults with Selective Mutism need

Appropriate support. Appropriate services. Compassion and understanding - rather than judgement! Imagine being unable to speak (due to anxiety) yet constantly being told you are rude! Compounding the distress that SM can cause, SM of engenders very little sympathy or support because it is often wrongly perceived to be a choice - namely a 'refusal to talk' - when in fact it is a phobia of initiating speech. Hence not only do people with SM suffer due to a condition they have not asked for - something that is happening to them, which is entirely beyond their control - they are also often judged harshly as being difficult, uncooperative, rude, dumb, standoffish, or even stuck up. They need support and, at key times, supportive intervention, not criticism or judgement. Bear in mind that Selective Mutism is something that a child or adult with SM feels he or she can no more help than any other person can help breathing. They are not being wilfully mute. They are entirely trapped by a complex system of anxieties and 'rules' at the heart of which is a phobia of initiating speech.

Where to seek help

For parents: If your child is under 18, parents may be able to access speech therapy. Additionally, children may be referred to CAMHS for psychological help. CAMHS are particularly relevant if your child is a little older and develops other issues such as depression. You may also wish to liaise with your child's school's SENCO and teachers. Very small changes to a child's school or college environment can make a world of difference. Arm yourself with literature - for instance from SMIRA's website and also Maggie Johnson's booklet which succinctly explains SM and can be downloaded from here - when interacting with the school or college. They may not have encountered SM before. You may also be able to find a private speech therapist via www.helpwithtalking.com. On their website you can enter a postcode and search for a therapist who specializes in Selective Mutism.

For adults with SM: The options are much narrower, unfortunately. If you are an adult yourself and can speak to therapists, you may find some benefit in accessing a talking therapy such as counselling or CBT. In general, therapists working with adults will have not have encountered SM before, and you might find yourself educating them. You may be able to access talking therapies through IAPT Services / your GP. You may benefit most by interacting online with other adult sufferers of SM.

For children with SM: If you are a child and are in need of support please contact Childline. They can help you with issues such as unhappiness at school or home, and bullying. And, best of all, you can contact them via e-mail. You do not have to telephone them. Older teenagers may be able to find mutual support in the various facebook groups for this condition. As ever though, please be safe online. Never arrange to meet anyone you may encounter online.

Further reading

Selective Mutism diagramLeon's storySelective Mutism video 1Selective Mutism video 2Selective Mutism video 3Selective Mutism video 4Selective Mutism video 5Selective Mutism video 6


©2012-2015 Carl Sutton / iSpeakOther Selective Mutism websites