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Edward's misdiagnosis

Photo: Read Edward's story

When Edward (9) was diagnosed with autism, he got support for his education – but mum Suzanne wasn’t convinced of his diagnosis and worried his deafness was being ignored…

Suzanne joined in the applause, blinking back tears. Her son Edward (9) had performed brilliantly singing and dancing in a show. She couldn’t have felt prouder. Edward had achieved so much – in spite of support he’d received, not because of it.

Born 14 weeks premature, Edward spent six months fighting for life before Suzanne brought him home. At nine months he was diagnosed with moderate bilateral hearing loss and given hearing aids. When he was nearly three, Suzanne was concerned about his speech delay – he was given speech and language therapy but only after she asked. Then at the doctor’s, she got a shock. “The GP said ‘Can we say Edward’s got autism?’” Suzanne remembers.

“My heart exploded. Nobody said they were looking into this. She said 10% of babies born under 26 weeks have autism – they’d decided he had autism at birth. No-one had told me!”Edward went to a mainstream nursery and was very happy for several weeks but suddenly started crying and being sick and stopped talking. The autism professionals who saw him at nursery referred him to a specialist nursery which he attended twice. It wasn’t the right provision for him so Suzanne decided to keep him at home and within weeks he was back to normal.

“I later found out it was when the professionals went in to put support in place that he’d got upset,” says Suzanne. “They were supporting him for autism. There was nothing for hearing, speech and language. No-one ever mentioned his deafness.”

"They tried to make him fit in a box – autism – and it made him so unhappy."

Six months on, the professionals said he should go to preschool. “It was calm, quiet and he loved it,” says Suzanne. “They did Jolly Phonics which he knew and he joined in with other children. A few weeks on he got upset and refused to go. He stopped eating and speaking. Again I found out it was when the professionals went in.”

Edward’s transition to primary school was disastrous. “He was in a class of 33. It was noisy with no provision for his hearing, speech or language. We were told he didn’t need a radio aid. He became distant and lost his speech again. The autism professionals were a problem for him,” says Suzanne.

Receiving very little support or input from their Teacher of the Deaf, just two weeks in, Suzanne decided to keep Edward home, as legally he didn’t have to start school until the following year. His speech and other skills returned.

After Easter he started a private school with smaller classes and loved it. But in November he again became unhappy and stopped speaking. “I later found out that again was when the professionals had gone in. After school I’d ask him about his day but instead of answering fully like before, he’d just reply ‘happy’ to every question,” remembers Suzanne.

"No one ever mentioned his deafness."

“I found out from a report that the professionals’ recommendations were to remove skills and knowledge and replace with over-learning and repetition. When I tackled the school, they excluded Edward saying they couldn’t meet the parent’s needs.”

After a year out of school because none could be found for him, Edward started another mainstream school. He was happy, speaking nine-word sentences and communicating well. A few months on, he again became unhappy, stopped talking altogether and couldn’t remember his maths or English. Suzanne later found out the support he was given focused on autism. She became more convinced they were wrong about his diagnosis. “I know there’s a crossover with deafness and autistic traits, including social communication difficulties and speech delay, which Edward has, and felt they’d wrongly attributed these to autism,” she says.

“His speech is delayed due to deafness which gives him social communication difficulties. When it’s noisy he can’t hear. When children are running about he can’t see their faces to lip-read and follow conversation. He’ll zone out and children won’t bother with him. Edward’s very sociable and the sad thing is he notices. He does Cubs, gymnastics and performing arts – he loves it and can perform before a huge audience. That’s not autism.

“Edward understands humour. He’s very bright; his thinking is fast which makes him talk fast and muddle words. His processing is slow due to deafness. His problem is speech and language – he’s not had a speech therapist for three years.”

Last year Suzanne applied to the Family Fund and received a grant towards buying a Roger pen radio aid and Edward also got a radio aid at school – both enormously helped his concentration, listening and communication.

Suzanne asked for Edward to be referred to Deaf Child and Adolescent Mental Health Services (CAMHS) and in November thorough tests showed he doesn’t have autism – his primary need is his deafness. She handed the report to school and attended meetings about putting the right provision in place, including a British Sign Language Level 3 support worker, so Edward can use Sign Supported English to help him.

“Hopefully with the right support in place he’ll be much happier and things will move forward,” says Suzanne. “Emotionally, the last seven years have been a roller-coaster. His education has been messed about. They tried to make him fit in a box – autism – which made him so unhappy. They did nothing to support his deafness. He lost two full years due to the systems they used for autism. Catching up will be his next hurdle.”