“The worry is always there,” says Mia’s mum, Maddy. “It doesn’t happen every night, but every night I go to sleep thinking it might.”
Since she arrived at Rainbow School (now BeyondAutism Schools), addressing Mia’s tendency to self-harm has been a priority for her tutors. They’ve worked to analyse why she injures herself, identifying triggers and working patiently to teach her behaviours or communication that don’t cause her harm.
“It’s not Rolls Royce education – it’s ambulance education,” says Maddy. “She’d be in and out of hospital constantly without it.”
The fight for support
Mia was diagnosed with autism at three years old, following a diagnosis of epilepsy at nine months. She couldn’t walk, talk or sign, and needed constant supervision because of her self-injurious behaviour and her lack of awareness of danger.
With her highly specialised needs, Mia’s case sounds straightforward. Instead, it provides a snapshot of the immense challenges parents face in finding the right support and education for their children.
First, Maddy and her husband, Gian, fought to get a statement from their local authority to say that Mia needed 1:1 support to prevent self-injury. Next, they started her in a home programme of Applied Behaviour Analysis (ABA).
Mia spent time with two ABA tutors in the morning, followed by nursery in the afternoon. And the difference was stark. Mia made progress with ABA straight away, beginning to sign, play and smile – but her progress flagged noticeably in the afternoons. It was clear that Mia needed to be in a full-time ABA school.
Unfortunately, when Maddy tried to get Mia placed at Rainbow School, their council said no – and instead named a place at a special school without 1:1 support.
Maddy and Gian had no choice. With the support of a fellow parent, they took the council to tribunal to appeal the decision and two years later, they won.
Hope in happiness
What does victory look like? “Mia’s happiness set in after about a month at Rainbow School,” says Maddy. “She started to laugh – we’d never heard her laughing before. We used to just stop and listen to her, it was such a joy. I think it was because finally someone could read her, understand her, teach her – not simply care for her.”
Some changes are practical. Mia used to have meltdowns in the supermarket, but now she pushes the trolley and picks up products off the shelves. She can make brief eye contact and imitate others. She understands cause and effect.
And some are beautiful. Like laughing when she’s tickled, or giving cuddles and kisses. “She’s a different person,” says Maddy. “She’s a little girl now.”
In her years at Rainbow School, Mia has made steady progress. The school has succeeded in drastically reducing her daily self-injuries, and has given her parents the tools and confidence to provide continuity at home.
“The school, using ABA, has been a lifeline to us,” says Maddy. “I am beyond thankful to have found it.”
“There is hope – now we know it can stop. And my hope is that she’s happy. I want her to reach her full potential. I want her to go as far as she can go.”