The experiences of adults with "selective mutism", in their own words

Some people have a condition that means in most situations, they can’t speak. There’s nothing wrong with their tongue or vocal chords , and they don’t have “aphasia” which is when brain damage affects speech. Yet most of them time, they feel completely unable to speak.

In 1934, the term “elective mutism” was coined to describe this condition based on the idea that people fitting the diagnosis were choosing to remain silent. But the favoured term, at least in the UK, has since changed to “selective mutism” to reflect the fact that for many, their inability to talk in some situations does not feel like a choice. For instance, someone with selective mutism might talk perfectly normally when home alone with their parents or other close family, but find themselves totally incapable of speech in public or at school or work.

Psychologists have struggled to explain selective mutism – some have suggested it is an extreme manifestation of social anxiety; others point to links with autism. What’s been almost completely missing from the literature so far has been the perspective of people with selective mutism. Helping to fill that gap, a new study presents the experience of five people with the condition, in their own words. Four of the participants were interviewed at length using instant messenger (a text-based way to converse) on Skype, and the fifth “participant” was the study co-author Aaron Walker, a prize-winning psychology student who has largely overcome his selective mutism and who provides his own reflections from diary extracts.

Analysing the interview transcripts, Walker and his colleague Jane Tobbell identified several key themes, some of which challenge the idea that people with mutism are choosing to stay silent. One theme was the participants’ sense of separation from their mutism, as if it was not a part of their true identity. Hannah, aged 26, was diagnosed at age 17 and has since then only been able to speak verbally with her parents. She described this sense of dissociation:

“It isn’t me. I know who I am and I’m not shy or quiet, maybe that makes it harder. When I’m with my parents I can be myself but around everyone else it’s like it [selective mutism] takes over. I can get the words in my head but something won’t let me say them and the harder I try the more of a failure I feel like when I can’t.”

The participants also described how their silence became self-fulfilling as others came to expect them to be voiceless. Sam, 21, has had selective mutism since the age of 8 and is only able to speak to his parents and close friends who he knew before that age. He put it like this:

“When I was at secondary school, because no one expected me to say anything it became kind of impossible to say anything, like, other kids just avoided me. Even the teachers would treat me differently. In History class the teacher would just skip past me when we had to read things out. On one hand it helped, I wouldn’t have been able to talk anyway.”

The researchers said examples like this show how selective mutism is maintained not only through the behaviour of the person with mutism, but also through the expectations and behaviours of others. Not surprisingly, this leads to extreme feelings of isolation for people with mutism. Ben, 30, has had selective mutism since early childhood and he painted a vivid picture of his loneliness:

“It’s like that scene from Scrooge where he looks through the window and he can see people having fun being together. I’ll always be stuck outside looking in.”

The final theme related to the participants’ feelings of regret for a wasted life, their lament for the “normal life” they had missed out on. Lily, 23, was diagnosed at the age of 12. She said:

“A lot of the time I worry about things I haven’t done, that I should have. [Interviewer: What kind of things?]. “All the things normal people do. I could have gone to university, I always did well at school. But it was different there, teachers knew about my problem. Maybe I’d have been able to get a job and be in a relationship. A lot of the time I imagine what my life would be like if I didn’t have selective mutism.”

On a more positive note, Walker [the co-author with selective mutism] said that he had managed to achieve some kind of normality. Not only can he give lectures, which once would have “seemed unimaginable”, but he added: “… even small everyday things such as asking for a train ticket or ordering a meal are reminders that selective mutism can be overcome.”

This study helps us understand the lives of people with selective mutism, thereby making a valuable addition to a scholarly literature that is dominated by the perspectives of parents, teachers and clinicians. While it’s not clear how representative the findings are of other people’s experiences with the condition (a contrasting 2007 interview-based study talked of people with mutism being “strong willed” and having a “conscious determination not to speak”), Walker and Tobbell make a powerful point: “… this study,” they said, “has demonstrated that there are ways to hear the voices of those with selective mutism, if we are willing to listen”.


Aaron S. Walker, and Jane Tobbell (2015). Lost Voices and Unlived Lives: Exploring Adults’ Experiences of Selective Mutism using Interpretative Phenomenological Analysis Qualitative Research in Psychology

further reading
Autistic children’s sensory experiences, in their own words
On being labelled “schizophrenic”, in the words of the diagnosed
What does it feel like to be depressed?
What’s it like to hear voices that aren’t there?
What’s it like to have OCD?
What’s it like to have chronic fatigue?
A study of suicide notes left by children and young teens

Post written by Christian Jarrett (@psych_writer) for the BPS Research Digest.

15 thoughts on “The experiences of adults with "selective mutism", in their own words”

  1. I was begunning to think that it wasn’t recognised and I was the only one that suffered however similar to the experiences it effects me a little different

    1. I was super shy as a child. I didn’t talk much. Abusive childhood. At age of 27. I had a lady screamed at me for 20 min. I couldn’t talk. It was like my brain forgot how to talk. It happened again and again. We would visit friends I wasn’t quite comfortable with. I couldn’t even say a word the entire time we were there! They would ask me to talk, I couldn’t!! They thought I was crazy. It happened again a year ago. I can’t control when it happens. I even have a loved family member not talk to me because, She, a friend, and I went to lunch. I was in mid sentence and froze. I couldn’t speak at all. She looked at me like I’m stupid. How can you tell anyone I have this condition? No one believes you.

  2. Why are we still waiting for what has been learned about selective mutism through listening to and engaging with those of us with lived experience of SM, to be incorporated into academic learning, language and crucially, understanding of the condition? It demonstrates that we continue to be failed (and damaged) by the ‘experts’/professionals involved.

    BPS is a respected voice, so the outdated language in the article, and what is implied by it, together with the only other study (from 2007) referred to in it, frames SM in a way that promotes damaging stereotypes of people with the condition:

    ‘While it’s not clear how representative the findings are of other people’s experiences with the condition (a contrasting 2007 interview based study) [involving 6 adults] talked of people with mutism being “strong willed” and having a “conscious determination not to speak”)’

    This leads to misunderstanding and consequently ‘mistreatment’ on many levels, by professionals, schools, and at work.

    The article which features a 2015 study involving 5 people, implies by omission that no other research of this type exists. While it is good to have research that supports the findings of previous research, the prior research needs acknowledgement. (I do hope it is acknowledged in the featured study.)

    The important qualitative research done by Carl Sutton (who has SM from childhood) in 2013 is not referred to or acknowledged at all — 83 adults took part in the study:

    ‘Selective Mutism in Adults: An exploratory study’
    Psychology for conversion MSc, Chester University 2013
    A summary of findings and a download of the study can be found here:
    Until this study, it had been the experts and more recently parents who have had a voice in the understanding, and / or misunderstanding of SM. There has been very little from those who have experienced SM. This important study listens to, and addresses the omission of those voices.

    ‘…the dearth of research in SM in adults is curious because long-term outcomes for SM are important in order to create guidelines for working with children and adolescents with SM.’
    The study looks at how SM has impacted their lives ‘in areas such as psychological / mental health, education, family life, and social functioning. 
    ‘…in the counselling profession there is no clinical understanding of SM. By way of example, if one searches the Counselling Directory at this juncture one will find one counsellor claiming to have experience of Elective Mutism (a term which… is 20 years out of date). Nothing else!’   


    In addition the book ‘In Our Own Words — Experiences in childhood and adulthood’, also by Carl Sutton (& Cheryl Forrester) was published in December 2015 by Jessica Kingsley publishers, and features the life experiences of around 40 adults and children with personal experience of Selective Mutism, in their own words. 

    Carl is also the founder of iSpeak the only SM organisation online that supports adults. The website gives up to date information on selective mutism.

    I am asking BPS to refer to this freely available information and correct some of the assertions in the article urgently.

    FACT: Individuals with SM feel traumatised by the inability to speak, compounded by lack of understanding and support.

    Very happy to help should you have any questions.

    Sonja Zelic

  3. I think I had selective mutism because I could not talk at all through elementary school to high school or at least up until I dropped out. Even my family I could not speak too only my mother sometimes my father, brother and sister I could truly be myself. The pain and emotional distress I was in was pretty severe and still effects me to this day and I don’t think anyone could get truly over it without some sort of help or councilling. No one understood me as a child all I ever wanted was to be good but could never meet the expectations I set for myself and I had a lot of self loathing and resentment. I remeber having dreams of just being able to talk and say what I wanted to and having a fresh new start and be truely happy but they were only dreams, definatly the most happiest but never a reality.

  4. My son has had selective mutism since the age of 3. He is now 18 and struggling through normal day to day life including school. Luckily though he has 2 wonderful and caring close friends who have been there for him since primary school. He is frowned upon by other students and they just avoid him and ask his siblings why he doesn;t talk. Teachers don’t understand the condition either and he has received no support from the school. He is just known as the boy who doesn’t speak. This lack of awareness and understanding causes so much grief to people like my son. The thought of him now entering the workforce is very daunting and not many employers are sympathetic or understanding of the condition.

  5. I just diagnosed my past self with SM after hearing the term for the first time a few days ago.
    I never knew the tongue tied lack of speaking and freezing up I had experienced through school had a name and others who experience it.
    I had suffered with depression, suicidal thoughts, loneliness due to the inability to make friends, and overall feelings of worthlessness and invisibility. Like I didn’t matter as a human being just because I was unable to get words out.
    I watched girls my age living their normal lives and socializing and dating and feeling like I couldn’t relate and wanted desperately to.
    I was diagnosed in my late twenties with anxiety disorder but I had no idea it was related to being mute.
    If I didn’t have sisters to bond with I think I would have been a lost cause.
    I didn’t get treatment for what I didn’t know I had but as I got older I just started opening up more and am now married with kids but I do have moments of relapse in certain situations.
    I also have feelings of being jipped in childhood especially since my condition wasn’t understood, not even by me.
    I have memories of adults (teachers, family members) who were unsympathetic to my struggle and instead of helping they just wanted to bully me into talking.
    I guess I was an easy target for those who choose to be cruel.

  6. This was nice and all but does anyone want to tell us how we’re supposed to get help with this if we aren’t able to communicate the problem to a doctor? For once I actually want help and I can’t get it

  7. I have a very dear friend who at times cannot communicate verbally nor even with written or typed (as in messaging/chats) words. We visit mostly online and it is a challenge. I have been seeking information to more fully understand this phenomena. I had great hope when I saw the title of this article and was quite disappointed. There were no substantial examples of what adults with SM experience as promised. I’ll keep searching for help for my own understanding because my friend is a wonderful person.

    1. I am not certain. Thank you for the link. I hought this was a single article online, did not realize there was more to the site. I’ll take a good look around.

      I am also wondering how to edit my first comment. I didn’t realize my full name would appear and would like to remove my last name on my first comment.

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