Being told their daughter, Alice, had a rare hearing disorder was devastating to Chris and Claire Campbell. Even more upsetting was being told she might need lifelong help. Alice had been diagnosed with auditory neuropathy spectrum disorder (ANSD), a condition affecting how sound is transmitted from the inner ear to the brain and the ability to understand speech. Alice, however, has confounded the audiologist's prediction: she is at a mainstream school and learning music alongside other six-year-olds, and has language skills beyond what is considered "age-appropriate" for a hearing-impaired child.
Her parents put this success down to auditory-verbal therapy (AVT). Alice began AVT after she was fitted with a cochlear implant – a small electronic device that provides a sense of sound to a person who is profoundly deaf. AVT is an intensive play-based method using residual hearing to pick up speech sounds for learning spoken language.
According to a 2008 study of 37 deaf children, AVT raised the language skills of 80% of them to those of their hearing peers by the time they started school. Advocates argue that it also helps children's social and emotional development.
AVT has been pioneered in the UK by charity, AVUK, which helped both Alice and her younger brother Oliver. The Campbells are passionate advocates of AVT, charting their daughter's hearing loss in the blog Alice's Ears, which has become a resource for parents globally.
"What surprised us was the low expectations the professional community had," says Claire. Chris adds: "I don't think our hopes are any different for Alice and Olly than for their older [hearing] brother, Joseph."
Since 2001, babies have been routinely screened by the NHS for hearing loss, which has helped detect problems far earlier. While this has allowed cochlear implants to be fitted to younger children on the NHS, it has revealed the shortage of trained speech therapists.
"When you've got the early diagnosis, what are you putting in place?", asks Anita Grover, chief executive of AVUK. "There is a small window when you can make a significant impact. If you don't continue to talk to your child, which many parents won't, you're not keeping that approach alive."
She would like to see AVT become as routine in the NHS as screening babies' hearing. Yet there is still resistance, she says, with AVT often not flagged up as an option. Some families say they have been told by speech therapists and teachers of deaf children to choose between sign language and AVT. There is also a "total communication" method, in which speech, signing and writing are developed alongside each other.
The Royal College of Speech and Language Therapists (RCSLT) and the British Deaf Association both promote the use of sign language. In a statement the RCSLT said that signing is "fully adequate and accessible". David Buxton, chief executive of the BDA, says: "Deaf children who communicate orally (as opposed to using sign language) were assessed [in a study] and the results showed that these deaf children had severe reading difficulties and in some cases were more severe than problems faced by hearing children with dyslexia."
Sapna Sharma was advised to bring up her son with British Sign Language. "It was very hard. You assume music, conversation, laughter, birdsong won't be part of his world," she says. "We did lots of research and came across parents' testimony [about AVT]. We were impressed."
She says that after using AVT her four-year-old son is catching up. "He's got into mainstream school, which we're very proud of."
But many deaf people remain opposed to implants. Deaf activists in the US argue that integrating hearing-impaired children into mainstream education amounts to "cultural genocide".
Grover understands that there are those who hold strong views but says it is about parental choice: "If you choose the technology, you're making a future choice for your child."
In the UK, where AVT was only introduced just over 10 years ago, speech therapists' attitudes are slowly changing. AVUK now runs a group for practitioners through the RCSLT. "We are definitely sensing a culture shift," says Grover.
AVUK charges about £15,000 for three years' therapy. But fundraising has allowed just over half the families it currently supports to receive free treatment. Says Grover: "This is about getting the best possible outcome for disadvantaged children, transforming their chances."