Invisible and undiagnosed: Adults with selective mutism reflect on their experiences of education

It is characterised by an individual’s inability to speak in certain social situations, even though they may speak freely with specific people.

Selective mutism in adults remains unrecognised by many health professionals. The condition is more frequently identified in younger children and it is commonly assumed that as people mature, they outgrow the condition. This is not always the case, and without a childhood diagnosis a significant number of adults remain undiagnosed and unsupported throughout their lives.

Motivated by this lack of awareness and by a personal experience of selective mutism, Isedora Lewis, a tutor in the School of Health and Social Sciences at Whitireia Institute of Technology, embarked on a research project to explore the experiences of adults with selective mutism for her Master of Professional Practice. She focused on the experiences of participants in the primary and secondary education system.

The first publications about selective mutism in adults appeared in 2015 but there remains a paucity of literature, with very little content focussing on experiences in education. Through her research, Lewis aimed to draw further attention to the condition and present the perspectives of adults with selective mutism.

Lewis advertised through various Facebook selective mutism support groups for study participants. She recruited eight participants over the age of 18 from New Zealand, the United Kingdom, the United States of America and Philippines/Australia.

‘I'm a narrative therapist so stories are important to me, therefore the research used open-ended questions in a survey format,’ explains Lewis.

All participants chose to take part in the survey via email rather than video conference and all opted to use a pseudonym to maintain anonymity.

Lewis asked questions regarding their education, their experiences with peers, teachers, and their families as well as about the school environment in general. The data was analysed thematically.

‘For many participants, this was their first opportunity to share their views… it was quite powerful. One participant provided 5000-word answers for each question,’ says Lewis.

A theme emerged around participants’ feeling of ‘being different’ in the classroom due to the social expectations at school.

One participant wrote, ‘If I didn’t know how to do something when doing my work, I would sit there staring at it, getting worked up inside. That sometimes ended up in me producing some tears that I would quickly hide because that would bring more attention. I never asked the teacher for help.’

Humiliation caused by teachers was another theme. Participants recalled teachers saying they wouldn’t make it to high school unless they spoke; being yelled at and bullied by teachers for not speaking in class; and teachers calling them stupid for being shy.

Another theme revolved around the general lack of understanding of selective mutism. Most spoke of not getting the support they needed because therapists did not know what selective mutism was, or what treatment was available. This was an issue at school and at home.

‘Participants talked about how their parents often didn't know they didn’t speak at school because they could be chatterboxes at home. The schools didn't know about selective mutism, so they didn't know how to tell parents,’ says Lewis.

Participants also discussed a feeling of frustration caused by not having a name for their condition.

‘Most of the participants talked about the finding out by chance that they had selective mutism and usually in their teenage years. Some didn't find out until they were adults. They found out themselves on Google, or at the library. One went to a doctor for a chest infection and was subsequently diagnosed with selective mutism,’ says Lewis.

Finally, participants commonly experienced mental health issues, both at school and in their adult lives. Participants detailed struggling at school with depression; a lack of friends; and having no social life. Participants also reported addiction to alcohol or drugs, anxiety, self-harm and suicide ideation as they grew older.

As a result of the study, Lewis proposes a selective mutism spectrum, allowing individuals to be placed on a continuum depending on how they are affected by the condition. With ‘low’ equating to those who have adapted well and function in society, through to ‘high’ for those who have not been able to adapt or resolve the condition at all and are essentially excluded from life. The eight study participants were spread evenly across the spectrum.

Lewis would like to develop the spectrum further so it can become an accessible tool for diagnosis, allowing practitioners to easily make an assessment and ensuring a client gets the support that they need.

Lewis has published her research, making a significant contribution to literature about the condition while also increasing awareness of selective mutism in adults.

Reflecting on the project, Lewis says, ‘the participants were very brave in what they said, some of them were quite heartbroken, it was good stuff to hear but sometimes painful. It was important to give people the space to share their views, and to really listen to them.’ 

• See 'I Spy: The Lived Experience of Selectively Mute Adults in Education,' by Isedora Lewis, in Whitireia Journal of Nursing, Health and Social Services, 27, 2020.
  
  
• Isedora Lewis experienced selective mutism as a child, and this is something she continues to live with as an adult. She is currently a tutor in the School of Health and Social Sciences at Whitireia Institute of Technology, and a therapist at Pandora’s Services. She holds a Bachelor of Social Practice – Counselling, a Post Graduate Diploma in Education, and a Master of Professional Practice. Contact Isedora Lewis.
  
  
• Visit Whitireia's website.