Battling elective mutism in autistic children

What do you do when your autistic child simply stops speaking to you at home? Richard Shrubb investigates the experience of the Dyer family on the Isle of Wight

By Richard Shrubb on May 20, 2011 in Autism, Children

Lauren Dyer, pictured with her parents, stopped speaking after being sent to a mainstream school

What do you do when your autistic child simply stops speaking to you at home? Richard Shrubb investigates the experience of the Dyer family on the Isle of Wight

The Dyer family moved from Doncaster to the Isle of Wight last year when father, Andy, was offered a job. Their six-year-old daughter Lauren is autistic but, after spending time at a special school attached to a mainstream school in Doncaster, they felt that she was improving.

“In fact her expressive speech was more advanced than many children her biological age,” says Andy.

“But when we moved to the island we found things more difficult.”

Andy says this was partly due to a dispute with the island’s education authorities over her statemented needs and partly because of a lack of services for SEN children within schools.

However, due to the stress of being placed in a mainstream school with limited support, Lauren developed elective mutism. She stopped speaking normally and regressed to making squeals, grunts, pointing and talking as if she was a toddler.

“She was also doing things like locking herself in wardrobes and behaviour that we had never seen before, even pre-diagnosis. But of course she was much bigger and stronger than she was as a toddler. We struggled immensely during those few months.

“She was really angry and took it out on us. We were devastated by her distress and didn’t know what to do,” adds Andy.

Teachers and school staff, however, said they were not seeing this behaviour. A social worker on the island, aware of the case but who did not wish to be named, points out that “autistic children, when stressed, can behave quite normally at school, but come home and take it out on their parents.”

In desperation the Dyers asked children’s social care services on the island for help and a child-in-need meeting was held. It was decided to put the daughter into Medina House, the only special educational needs primary school on the island.

Andy says the change worked and Lauren “was happy and doing well at special school. She started to speak normally again – it was wonderful to have our daughter back”.

However, SEN schooling provision on the island is limited and budget cuts mean Medina House is reserved for only the most disabled children with the most complex needs.

The Dyers have now been told their daughter will be returning back to mainstream schooling and they fear her elective mutism will make a return.

“We worry that Lauren is going to enter a cycle of decline and remission, the decline in mainstream school, and remission in special school,” Andy says.

Budget cuts mean that a planned dedicated autistic unit on the island is now unlikely. “We are trying to convince the education authorities that she needs constant one-to-one support to help her cope with mainstream school but if they refuse then we’re not sure what we can do. We’ll probably have to take her out of school and home educate her,” Andy says.

What is elective mutism?

This is a rare disorder – studies have shown that it can affect as few as eight in 1,000 children.

Dr Iain McClure, a child and adolescent psychiatrist in Scotland, says the term “selective mutism” may be more appropriate “because the child selects whom they speak with. They may be able to speak freely and normally in certain situations but resort to other forms of communication with, in this case, her family.

“Selective mutism among autistic children can be a result of anxiety. Because they do not understand their emotions the anxiety shows itself in inhibiting their ability to communicate.

For autism the best interventions are generally on the social care side, but when anxiety builds up mental health problems can occur. At this stage you should call in a psychiatrist,” McClure adds.

Tips on tackling mutism

● Try not to place pressure on the child to talk, but give them lots of encouragement to interact with others.

● Create a rewarding atmosphere, where the child feels very comfortable.

● Praise and reward the child for every achievement, to build their self-esteem.

● Accept any form of communication, i.e. if the child struggles to answer a register call at school, allow them to raise their hand or smile instead.

● Encourage participation during noisy games and rhymes.

● Encourage self-expression through creative activities such as art or music.

Source: Southwark Health and Social Care

This article is published in the 26 May 2011 edition of Community Care under the headline “Breaking through the silence”

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