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Andrew’s deafness and autism

Photo: Read Andrew's story

Andrew, who has autism and hyposensitivity – meaning he thrives off stimulation – is a happy boy who loves rough play, musical toys and trampolining. “Take him to a new environment and he’s off at the other end of the room,” says Laura.

But it was a rocky start for Andrew, who was born 11 weeks premature. “We thought we were going to lose him,” says Rik. “After his birth they found a bleed on his brain and the paediatrician didn’t know how that would affect him,” remembers Laura. “Whether he would have visual, hearing, speech or cognitive problems, they had no idea.”

So when Andrew failed the newborn hearing screening and further tests showed he had auditory neuropathy spectrum disorder (ANSD), the couple were relieved it was only deafness.

“Andrew’s developmental delay became increasingly noticeable.“

“They thought he was profoundly deaf at first,” says Laura. “But that was complicated by the autism that they couldn’t see in such a young child,” explains Rik. “There’s no way of measuring one or the other – they clash."

“Because he was so premature,” says Laura, “there was chance of a delayed maturation, so they opted to do nothing at first and we went back for re-testing when Andrew was eighteen months. They did a standard behavioural test but there was no way Andrew was able to comply with what they wanted, so they had to judge it by whether his eyes flickered or his head moved in response to noises.

“Andrew’s developmental delay became increasingly noticeable. He lacked focus – getting him to engage on a task was difficult. So he was referred to Deaf Child and Adolescent Mental Health Services who diagnosed classic childhood autism. This confirmed what we expected and opened doors to more support and grants. We’ve learnt a lot about autism, including that it’s a wide spectrum and no two children are alike.

“Communication is a challenge. Andrew’s completely non-verbal, although I think he’d like to speak. He uses objects of reference, like a bib if he wants food, and will take our hand to lead us to something. We had no joy with sign language because of attention issues from the autism but we might try Picture Exchange Communication System (PECS) in the future.”

"The first time around we were declined for a statutory assessment."

Laura doesn’t think that anyone understands how deafness and autism work together. She explains…

“Nobody can say how one is affecting the other. Can he hear but not show it because of the autism? Or can he actually not hear but can’t tell us because of the autism?” Rik adds, “I think it’s about being aware which condition is most dominant.”

Laura and Rik believe Andrew’s autism is his predominant need, and so fought to get him a place at an autism school.

“We started the process of getting him a statement of special educational needs when he was two,” remembers Laura. “It was already obvious then that with his developmental delay mainstream education wouldn’t be suitable. The first time around we were declined for a statutory assessment but we wrote to the council and they reconsidered.”

Andrew was given a statement that said specialist provision would be best for him. “The council didn’t name a school and in discussions they thought he would be most suited at a school for children with multiple disabilities,” says Laura.

But the couple thought that the school, which was very bright and colourful, would not suit Andrew’s focusing issues. “There was so much on the walls – he’d be far too interested in that,” says Laura. They had to appeal for a place at the autism school but the council conceded just before tribunal. 

“We never give up hope.”

“It’s always a battle,” Rik sighs. “Even now, Andrew’s headmaster says he might be better suited elsewhere. But ask him where and he doesn’t know.”

“He’s worried the school isn’t meeting all of Andrew’s needs,” adds Laura. “But whether he goes to deaf school, multiple disability school, or autism school, it’s going to be a compromise. In the autism school he gets support from a Teacher of the Deaf, a speech and language therapist, there’s a high teacher-pupil ratio and staff are accustomed to non-verbal children. And it’s a nice school and Andrew enjoys going there.”

Laura and Rik feel they’ve been offered all the support out there, but it hasn’t always been useful due to Andrew’s combination of needs.

“You’re not going to find a specialist in both,” says Laura. “You’re going to spend your life telling one side what the other side said.”

Connecting with other parents is something that Laura finds valuable. “Take advantage of social media,” she recommends. “I’ve been on forums such as Netmums and Facebook groups, and there’s Contact where you can search for children with similar disabilities. Whatever you’re going through there could be others experiencing the same.

“We never give up hope. If we can crack Andrew’s communication issues then hopefully his development will take off. We just hope that in the future he can become an independent adult. We’d like him to try and live as normal a life as possible.”