For adult sufferers of Selective Mutism, a little-known anxiety disorder that usually disappears in childhood, speaking is a source of profound fear. Rebecca Kamm reports on the invisibility of those who live a life without words.
In 2002, when she was 17, Anna Clark from Taranaki sat on her bed with her diary.
"I feel like I’m in the middle of an airport tarmac with everyone else outside in the green fields," she wrote. "I feel like someone trapped in a box."
She had always been a shy child. Everywhere she went, so did her satin comfort blanket, and in her first year of school she answered the teachers in just a wisp of a voice.
But then when she was six years old her voice began to fade out to nothing at all, like the small white dot when you turn off an old-fashioned TV set – tiny, tinier, gone. Unless she was with her family, the words just wouldn’t come out.
"I can see myself sitting with the teacher at one side of the classroom," she emails, because at age 31 the words still won’t come out. "She wanted me to read out loud to her but I couldn't. All I could do was sit silently in the chair. I was frozen."
In later primary school I managed to speak a little to a couple of friends. However, I regressed in high school. I could not speak to any of the other students or the teachers.
No one knew it then but the freeze would plough on, ambivalent as any force of nature as it swallowed up what remained of her childhood.
"In later primary school I managed to speak a little to a couple of friends, but I regressed in high school," she explains. "I couldn't speak to any of the other students or the teachers."
At high school Anna was known as ‘the girl who doesn’t talk'. If she needed anything she had to scribble a note to the teacher, and at lunchtime she ate outside on her own.
"Some of the other students would speak to me," she says, "and many were nice. But I couldn’t speak to them, so they mostly avoided me."
Being an outcast is painful, but it's also immeasurably dull. Without the usual trappings of teenage girlhood – the singular closeness of a best friendship, long phone calls about nothing – school life was a flat, desolate blur. "Day in and day out", she wrote in her diary. "So monotonous."
The boredom, the scrutiny, the sitting outside eating lunch on her own; it was too much, and her frazzled 15-year-old body revolted. Depression and panic attacks forced Anna out of school for "quite a length of time", and when she returned it was with a teacher’s aid.
“The limits of my language means the limits of my world,” wrote the philosopher Ludwig Wittgenstein. Anna's world was shrinking just as her peers were getting their first taste of freedom. Her mum still did everything for her, even after she graduated. "I think I may be a helpless sort of person," she wrote at 19.
Thoughts of the future began to nag: One day her mother would be old and it would rest on her, Anna, to do things for the both of them. It was unthinkable; the wall separating her from the speaking world was too high, and too thick.
But if she can talk, asked her brother and her father from the sidelines, then why doesn’t she?
Selective mutism, or SM for short, is a largely unknown anxiety disorder that can also be described as a phobia of talking.
Sufferers can speak normally in ‘select’ situations but otherwise remain mute. The most common pattern is the ability to talk with family, but not in public or social situations, including school, university, with colleagues, to strangers – anywhere and anyone outside their safe zone.
SM is psychogenic, which means it manifests physically but its root cause is psychological. People with the condition aren’t mute because there is something wrong with their vocal cords, or because they have a speech defect. They just have a debilitating fear of sounding strange or stupid.
The key thing to know is that sufferers don’t choose not to talk – their silence feels beyond their conscious control, even when it forecasts certain humiliation.
“We can all withhold speech out of choice, but it's generally short-lived and feels nothing like being unable to speak,” says Alison Witgens, a speech language therapist at St. George's hospital in London.
Wintgens, who has authored several books about SM, says sufferers “inwardly panic, become physically frozen and cannot utter a sound".
When Anna tries to talk, rational thought is eclipsed by deep shame. No one likes me, she thinks. Or, Everyone thinks I'm strange. Then her whole body goes into shutdown mode. “My face contorts. My throat feels closed, my stomach churns, my knees shake..."
To avoid episodes like that, she avoids the things that also happen to make up a life. Eating out, holidays, public transport, shopping. “I have had very few friends,” she says. “I didn’t develop the ability to socialise.”
Years ago, it dawned on her that even if she could suddenly speak, she would have little idea how to hold a conversation. Right now, just walking down the street makes her nauseous. So does entering a store. “I always fear the shop assistant coming to ask me if I need help with anything," she says.
Driving is off-limits, too. What if she got into an accident and had to get out to speak with the other driver? “Or if I ever had to stop for a police officer for something like a random breath test. I fear I would freeze and be unable to say anything and they would wonder what was wrong with me.”
She got her license two years ago, but only because her brother came along to the lessons and spoke for her.
There are some small exceptions: she can say goodbye to extended family when they visit “if I stand behind a door or a wall”. And she can whisper "thank you" in shops sometimes if she’s away from her hometown, where everyone knows her.
Anna, who writes with the formal eloquence of someone educated yet untouched by conversational shortcuts, lives on a farm with her mum and survives on a sickness benefit. Every day she helps out with chores and checks on the animals and listens to music (contemporary Christian). Then in the evening it’s a long walk, and maybe a DVD. “We like BBC historical dramas, like Pride and Prejudice."
The only time she leaves the farm is to see her new psychiatrist. She can’t speak in their sessions, so she types out messages on her phone for him to read.
She saw her last psychiatrist for ten years and could speak to him, but his treatment plan felt back-to-front. “He kept saying I had to start speaking to overcome my depression – which I can’t do. I need to feel happier and less anxious before I can even try to attempt to speak.”
“The older you go, the rarer selective mutism is,” says Dr Elizabeth Woodcock, a clinical psychologist and director of the Selective Mutism Clinic in Sydney.
British estimates indicate that seven in 1,000 children suffer from SM, compared with one in 1,000 adolescents and one in 2,400 young adults.
Other anxiety disorders can creep up later in life, but SM almost always appears in sufferers between three and six years old, says Dr Woodcock. “At some point in their lives, children get treatment for it. Parents keep pursuing and pursuing until they find something that works.”
For the condition to have clung on, it was either so severe that treatment failed, treatment couldn't be found, or it wasn’t addressed at all.
Adult cases are therefore infinitely more complex: For the condition to have clung on, it was either so severe that treatment failed, treatment couldn't be found, or it wasn’t addressed at all.
Anna's family did what they could. There were counsellors and antidepressants and her school organised art therapy. But they lived rurally and had limited means.
“There is evidence to suggest the amygdala of individuals with selective mutism is over-reactive,” says Dr Aimee Kotrba, the lead clinical psychologist at Thriving Minds Behavioral Health, a pediatric clinic in Michigan dedicated in part to selective mutism.
The amygdala – which Kotrba describes as “our brain’s watchdog” – is an almond-shape set of neurons in the brain's medial temporal lobe that houses our fear response. Its job is to look out for danger. The problem is that people with SM see danger in all sorts of places. This explains their physical symptoms: ‘freezing up’, a racing heart, muscle tension.
Anxiety is thought to be a blend of genetics (nature) and modelling (nurture). Many, if not most, sufferers of SM come from anxious families, says Dr Kotrba.
Anna’s family have battled anxiety, depression, eating disorders and obsessive compulsive disorder. When it came to inheriting panic, she was a sure bet. The fact it then manifested as SM was a parallel stroke of bad luck, likely triggered by starting school.
Anna has a degree in I.T. and history, “things I could do mostly without speaking”. It meant living with her brother while she studied, and writing emails to converse with her tutors, but she did it. She has never had a paying job though, or a romantic relationship.
Who would Anna be if she could speak? “I would definitely have a job and not be dependent on other people’s help for everything," she says. "Maybe I would travel, maybe I would be married and have children. I could try to make friends. I could find what my role in life is.”
The few medical experts in SM, and they are rare as hens' teeth, use words like “hidden”, “under the radar” and “invisible” when they talk about the condition.
To understand why, it’s necessary to go back – but not that far. Selective Mutism was first reported by a German physician, Kussmaul, in 1877. He came across children who “refused” to speak, and named the disorder Aphasia Voluntaria.
Therein followed a 100-year stretch of, well, nothing. Right up until the 1990s, SM was largely ignored, considered too rare to be of public interest. The scant literature that did exist dated back to the 60s and painted a brazenly negative picture of manipulative children who clammed up in stubborn defiance.
Finally, in 1994 – thanks to lobbying by The Selective Mutism Foundation in the US – the disorder's second name, ‘Elective Mutism’, was thrown out in recognition that sufferers do not ‘elect’ to be mute.
Only then did the door to enlightenment begin to slowly creak open.
But for all intents and purposes it is still creaking, says Toni Pakula, co-founder of New Zealand SM charity, Voice. “The majority of people have either not heard of SM, or they misinterpret its meaning. We’ve had parents tell us that their doctors have had to google the condition.”
And yet, in 2016 – thanks largely to the internet – young children with SM are inarguable well-catered for. There is a wealth of literature available, plus support groups, ongoing research, and the odd specialist pediatric practice.
In short, if you have SM as an adult, good luck.
“Not many people even realise there are adult sufferers,” says Pakula. “It scares me to think how many lost voices may be out there. People locked away in their homes, on the streets. Some become agoraphobic, others turn to substance abuse or alcohol, and many, many more are depressed.”
Why the glaring omission? One explanation is that adult cases are rarer. Another is that adults with SM often hide away from the world. Even if they do leave the house, the condition isn't detectable, unlike other speech-related issues such as a stammer.
More perplexing is the fact medical bodies, almost without exception, define SM as an exclusively childhood disorder. Despite the inclusion of adult sufferers in the official DSM description. Which means Anna remains invisible not just from public life, but also from the medical field her disability occupies.
Carl Sutton, who runs iSpeak – the only organisation in the world that caters to adult sufferers – has written to multiple SM experts about this omission.
“But they are pretty closed-minded about it,” says the 46-year-old I.T. professional from the UK. “I get blanked when I say, ‘Excuse me, can you please change the info on your website and literature, because it is incorrect. I exist, as do all the people I have been in contact with.”
In 2003, Carl authored a study on the experiences of adult sufferers for his Masters in Psychology. He interviewed 83 people from 11 countries and noted their extreme vulnerability to depression: approximately four times higher than that of the general population.
Only one quarter of his subjects had ever received a formal diagnosis. “So,” he wrote, “for every person who was diagnosed with SM, there could well be many more with the disorder who have not received a formal diagnosis but have been affected by SM just as much.”
Carl recently released a book filled with first-person accounts from adult sufferers. It is the first and only one of its kind. "As someone who has been in contact with a few hundred adults with SM," he says, "I often feel like I'm virtually the only person standing up for the reality of this condition, never mind the existence of adults."
At SM Space Cafe, a closed Facebook support group, 553 people from around the world are busy comparing notes and posting motivational quotes (‘It’s a slow process, but quitting won’t speed it up’).
A young woman has photographed a colourful drawing she has done of four butterflies. It lies flat against a butterfly-print duvet cover and carries the message: "One day, we will all find our wings and be free."
Some report progress, like making a phone call while no one was looking. Others lament steps taken backwards: “Everytime I promise myself next time I will just say it, next time is come and didn't said it. Im so tired of that …" [sic]
"Is it possible to live with SM and be happy?" they ask. "What techniques or therapy are working for you?"
Most have never seen a doctor about their SM, let alone one who actually knows about it.
Most have never seen a doctor about their SM, let alone one who actually knows about it, let alone one how actually knows about it and has experience treating it.
“I am so surprised there are so many sm sufferers out there. I always thought it was just me,” reads a post, followed by a torrent of relief:
“I always thought I was alone.”
“I think we all did.”
“Isn't it lovely finding out we aren't alone!”
“In human intercourse,” wrote the author Henry David Thoreau, “the tragedy begins not when there is misunderstanding about words, but when silence is not understood.” Sooner or later, when you have SM, your silence will be misunderstood. People assume extreme rudeness or intellectual impairment. That’s why here at Space Cafe they are more than willing to help outsiders understand.
There is 30-something Declan from Ireland, a quantity surveyor. He can’t speak to anyone from his past who knew him as a selectively mute kid. This is how Declan describes his childhood:
“It felt like there was a second heart in my gut that shot out streams of cold sickly sweet liquid that travelled through all my veins, and when the moment came for action this liquid froze and expanded and constricted my throat and body. The more I tried to fight it, the more intense it got.”
These days, “I feel angry and humiliated and weak when I cannot speak."
When Declan was six his parents took him to see a speech therapist. "I think they thought I didn’t speak because I didn’t know how to pronounce words properly, but I did," he says. "I never knew why I was there."
The next time he saw someone he was 33, after he came across something online and recognised himself in the description. His psychotherapist had never heard of SM. Neither had his doctor, who still won’t acknowledge it exists.
Gabrielle, a 28-year-old from Pennsylvania, woke up one day when she was nine with a cold, and found her voice was gone. “When my voice came back,” she says, “I just didn’t use it.”
Like Declan, she is mute with those who knew her as a child, when she had full-blown SM. “I have mentioned it to a handful of therapists I've seen [but] they seemed to skip over it, or not ask about it at all.”
Becky, 29, from Yorkshire, can talk to everyone these days, but only one or two words. "After that, my mind goes blank, so someone has to step in and save me in case I totally freeze.”
Her mum and grandfather had SM, too. “It’s like there’s something physical blocking your voice. You are screaming the words in your head but they just will not move down to your mouth.”
Becky can’t work, and her partner has to make phone calls for her. If she could pick it, “I'd be a chatty outgoing person, which I am when I’m at home and not anxious. But there's no one there to see it. No one sees the real me.”
Marian Moldan, a clinical social worker in New York, runs a group for young adults with SM. She says it is absolutely “imperative” that adult sufferers are acknowledged in order for healthcare services to catch up.
Two things worry her: first, “the lack of healthcare and self care, because they are afraid of having to speak to a doctor, dentist, or health specialist”. Her clients' inability to form romantic relationships is next on the list. Thanks to years of not speaking, and the subsequent loss of formative interactions in adolescence, the risk of a lonely life is high.
Dr Aimee Kotrba, one of the only SM specialists contacted with some experience with adult cases, says such cases tend to be “quite hard”.
"Many grownups with SM have loved ones who ‘accommodate’ their lack of speech, so they’re less likely to feel motivated to speak."
“First, they rarely self-refer to treatment, as it’s anxiety provoking,” she says.
“Second, many grownups with SM have loved ones and colleagues who ‘accommodate’ their lack of speech, so they’re less likely to feel motivated to speak.
“Finally, mutism becomes a habit or part of their behavioural repertoire, as well as part of who they are, which makes the behaviour even more difficult to change.”
That might sound hopeless, says Dr Kotbra, but successful treatment is possible. “The key is a motivation or desire to change, and a willingness to challenge themselves to engage in social activities, even when that’s difficult.
“It’s also important to find out if the psychologist has experience working with anxiety – especially social anxiety or adult SM – and if they use CBT.”
But physical proximity to an expert like Kotrba is the exception, not the rule. And therapy is expensive. Especially if, like many with SM, paid employment is not an option.
To access public mental health services in New Zealand, a referral from a GP is required. This is yet another hurdle, says Toni Pakula of Voice. “In most cases, seeing a GP would be very difficult to do for a sufferer of SM on their own.”
Even if they did manage to secure free treatment by proving they cannot afford it themselves, “I’m not sure there would be anyone with awareness of SM in adults working for those services. So I think seeking help – and then being able to get the ‘right’ help from people who understand – would be a very challenging task.”
The writer Maya Angelou had selective mutism between eight and 13 years old. “I thought of my whole body as an ear,” she wrote, “so I can go into a crowd and sit still and absorb all sound. That talent or ability has lasted and served me until today.”
“If one can't speak, one truly listens," says Carl Sutton, of iSpeak. "One lives within the thoughts and feelings of other people and can have a profound level of empathy. It’s not the case for everybody, and on the whole SM is an ordeal, but struggling with communication teaches you what it is to be human.”
For Anna, reflecting on what good or essential human truths might be extracted from the torture of SM is a hard ask. Her depression is bad at the moment and she has little energy.
"I have heard other people say that having SM has made them better listeners and observers, but I actually have not noticed that with myself," she emails.
"I have actually found my anxiety makes me less observant and I miss hearing important things. I think the thing that having SM does it give you an ability to empathise with other people who feel isolated or different.