Wednesday, 8 July 2015

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".

_________________________________ ResearchBlogging.org

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.

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