60 www.autismeye.comAut ism|eye Issue 14 2014 61Aut ism|eye Issue 14 2014

Selective mutism

Silence is not goldenWhen a child fails to talk in certain situations or to specific people, it may be because of selective mutism. Fiona McNeil asks parents and experts for their experiences and advice

For children on the spectrum communication is rarely straightforward. Some may talk at length about their favourite hobby, or find it difficult to take turns in a conversation, while others may get upset if people use a word they don’t like. Sadly, some cannot speak very much at all.

What if your child with autism can speak, but only with certain people? What if they chat at home but stop talking at school and can’t tell you why? It’s a situation that can arise with autistic and neurotypical children, say the experts, and in the old days it was attributed to wilful and possibly manipulative behaviour.

“Until 1994 the condition was known as elective mutism, suggesting that the person had chosen to stop speaking,” says Alison Wintgens, a retired speech-and-language therapist with specialist knowledge of the subject. “We now know this is absolutely not true. These days it’s called selective mutism, and has been re-classified as an anxiety disorder. It could be described as a phobia of talking.”

Gail Hawker’s daughter was a bright, quirky child. Although she talked at home when the topic interested her, she was silent at school and teachers raised concerns that she might be on the

Whatever else is going on with

the child, the selective mutism should be treated separately”

autistic spectrum. She was referred to a paediatrician for assessment, but the doctor said she couldn’t evaluate a child who didn’t speak and passed her to Great Ormond Street Hospital. After the family submitted video footage of the girl talking at home, the team eventually diagnosed high-functioning autism and selective mutism.

The family approached their local NHS speech-and-language therapy department for help. However, with selective mutism being classed as an anxiety disorder they were passed to Child and Adolescent Mental Health Services (CAMHS), which provides NHS services for children in the mental health arena. But CAMHS, in turn, said they couldn’t help.

Since then, Hawker, a lawyer living in Essex, has battled with the NHS and her local authority to secure assistance for her daughter. Recently, she has resorted in to a private therapist. “Two years on, I’ve achieved a fragmented input

from a range of different therapists, a botched transition and a seemingly pointless, weekly intervention that has now been stopped,” she says.

Hawker thinks her daughter’s anxiety about speaking originates in the way her autism makes communication generally difficult. “We asked for a report on her auditory processing skills and her scores were very low,” she explains. “This affects her word memory and sentence memory. At home we often have to repeat things, but this doesn’t happen in normal conversation so she feels disadvantaged. She knows she’s a square peg in a round hole.”

Having difficultiesDr Daphne Keen, a consultant neuro-developmental paediatrician at St George’s Hospital in London, says that selective mutism often goes hand-in-hand with developmental disorders such as motor delay, delayed speech, bed wetting and, of course, ASDs.

“If you’re having difficulties, you’re more likely to clam up,” she says. “Where a child has autism, selective mutism can affect anyone across the board, even someone who is severely impaired, though it tends to be more at the higher functioning end. It all depends what is normal for that person.”

Selective mutism is often missed in children because teachers and health professionals are not aware of the condition, says Dr Keen. Prompted by this, she initiated a research project, published in 2010, where experts such as psychologists, doctors and speech therapists around the world pooled their knowledge of selective mutism to try and find the best way of treating it.

“Our research showed that whatever else is going on with the child, the selective mutism should be treated separately,” she explains. “Speech-and-language therapists are well placed to do this, though different local authorities take different approaches.”

Mum-of-four Gabi Bateman’s daughter Shannon has autism and selective mutism. She was always reluctant to speak at school, but teachers thought it was just shyness and that she would grow

Further reading

Can I Tell You About Selective Mutism? A Guide for Friends, Family and Professionals by Maggie Johnson and Alison Wintgens. Jessica Kingsley, £8.99. www.jkp.com

Tackling Selective Mutism by Benita Rae Smith and Alice Sluckin contains a chapter on ASD and Selective Mutism by Alison Wintgens. It is due to be published by Jessica Kingsley in September at £19.99.

The Selective Mutism Resource Manual by Maggie Johnson and Alison Wintgens. Speechmark, £46.25. www.speechmark.net/shop/selective-mutism-resource-manual

Selective mutism

out of it. “As she got older, she began to worry about other things – crowds and PE, for example,” Bateman says. “By the time she was in Year 6, she was refusing to go to school.”

Social workers intervened and referred Shannon to the local CAMHS in Lancashire, who, Bateman says, have been extremely supportive. “They listened to everything I said and, eventually, we got the diagnosis.”

Shannon is now 15 and at secondary school. She still doesn’t speak in the classroom, though she will occasionally whisper to the teaching assistant. “She should

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have got the diagnosis at a younger age, because now her behaviour is more entrenched,” Bateman says. “Unfortunately, her primary school didn’t have enough knowledge about her condition and we couldn’t get any help until we had a diagnosis. Early intervention is essential, Dr Keen concurs, and recommends that concerned parents photocopy strategy suggestions from The Selective Mutism Resource Manual to hand to the child’s school for guidance.

Selective mutism is diagnosed as a consistent failure to speak that cannot be attributed to other conditions, says Alison Wintgens. She agrees that it can be very difficult for families to find the right help. “There’s little training at undergraduate level and not all professionals are confident diagnosing it. Parents should ask around for recommendations.”

Treating selective mutism in a person with autism should be the same as for a neurotypical patient, Wintgens says, the crucial factor being that they are not pressured to speak. At home there should be no discussion of the condition, no bribes, nor any inadvertent rewards for remaining silent.

However, where someone with selective mutism is on the spectrum, practitioners will need to make allowances for an autistic person’s need for visual materials and their tendency to take things literally.

CONTACTSMIRA, The Selective Mutism Information and Research Association, has a website at www.smira.org.uk. The site is being updated so you will find more information on the group’s Facebook page: www.facebook.com/pages/Smira-Selective-Mutism-Information-and-Research-Association/120663428027161

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at a younger age, because now her behaviour is more entrenched”

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