‘My fight for all children’s voices to be heard’
Susan Griffin meets the young campaigner taking a stand for those with childhood apraxia of speech
Mikey Akers is fighting for children’s voices to be heard – in the most literal sense. Every year, one in 1,000 children in the UK are diagnosed with childhood apraxia of speech (CAS) – and he was one of them. Now aged 22, he’s been campaigning to raise awareness of the condition since he was just 13.
CAS, known until recently as developmental verbal dyspraxia, is a motor speech disorder, where the brain struggles to send messages to the muscles used to talk.
It causes unintelligible speech, which is hard to understand, even to family members. It also impacts a child’s ability to read and spell, hindering their progress in school.
“The only way to describe it is the word I have in my brain getting jumbled on the path to my mouth, resulting in sounds coming out wrong,” says Mikey, from Solihull, West Mids, who won a Pride of Britain award in 2018.
“Reading and writing are also difficult. By the age of 11, my reading and writing was that of a seven-year-old.”
Last year, Mikey appeared in Chris Kamara’s documentary: Lost for Words, following the ex-footballer’s apraxia of speech diagnosis. Next month, on October 19, he and Chris will be speaking at an event in Parliament, hosted by Mikey’s local MP, Saqib Bhatti and the Royal College of Speech and Language Therapists (RCSLT) to highlight issues.
“We want children to receive the specific speech therapy they need, and to raise awareness of CAS amongst all speech and language therapists (SLTS), teachers and professionals and provide more resources and support for families,” says Mikey, who was diagnosed with the condition aged two, but was eight before anyone outside his family began to understand him.
“I didn’t really know any different until I started primary school, but quickly realised no one else was leaving class to go to speech therapy or struggling to make the teacher understand them,” Mikey says.
“I remember when I was five, we were asked to take it in turns to stand at the front of class and talk about our weekend. I thought I had managed to position myself so the teacher would think I had already had my turn. I was so relieved she hadn’t noticed me, but later found out, through my mum, that she had just let it go,” he recalls.
“By the time I left primary school, the anxiety I had around my speech stopped me from speaking to people I didn’t know. I would just clam up.
“That is not great when you attend a secondary school that none of your friends have gone to. For six months, I hid in the learning support room every break and lunch until the school encouraged me to build friendships through groups and clubs.
“The lads I met persevered with me for months until they broke down my wall and I am still friends with them now.”
Children diagnosed with the condition only significantly improve through frequent, intensive and, crucially, targeted speech and language therapy with an SLT who has the relevant knowledge and experience. But this specific provision is not guaranteed. Access is dependent on where the child lives, the level of support shown by the school and its special needs coordinator, and whether the local authority is capable and willing to meet their additional needs. It is a complicated situation exacerbated by a lack of understanding, funding and recruitment. Helen Stringer, a lecturer in Speech and Language Therapy at Newcastle University, says: “CAS impacts formative development, which is why it is so important to adopt tailored intervention early, but we’re facing a shortage of therapists and an underfunding of service.”
Helen is lead author on a RCSLT project, due to be published later this year, which will formally adopt the term CAS, something already used internationally. The 2011 Policy Statement will also be updated, to incorporate the latest research and help people better understand the complexities of the condition.
“Speech and language is the panacea, so not being able to communicate efficiently and effectively is an enormous handicap to anyone. This is about political will and government policy, and how much they want to invest in the future of society,” she explains.
Mikey is testament to what can happen when appropriate support is provided. Following his diagnosis, he received weekly NHS speech and language therapy with an SLT trained in CAS, supplemented by sessions with a teaching assistant.
For six months at school I hid away from everyone at lunch break