When Grantchester star Kacey Ainsworth was told her son was on the autistic spectrum she went through a period of mourning for the life they might have shared together.
Things that most families take for granted – an impromptu visit to a
restaurant or a family holiday – can cause Elwood immense distress and require copious planning.
“Christmas is always bad, routine goes out of the window because you change everything about your house,” Kacey, 50, explains.
“You put up a tree and tinsel and there are presents underneath and he doesn’t know what they are, which would upset him.
“Changing the clocks is a difficult time – it takes him weeks to get used to that – and going anywhere new is hard.
“Everything is negotiated and explained in advance. When he was younger we would show him pictures of a restaurant and even discuss what time we were going to leave.”
This is Kacey’s first interview about her son – she has decided to speak out in order to reassure other families that ASC is nothing to fear.
And despite the upheaval to their lives – Kacey virtually gave up work for seven years, accepting only one acting job a year in order to care for her son – she insists she would not change a thing.
“My son is a unique, wonderful individual and looks at the world in a completely different way,” she says.
“I feel like I’ve been given a wonderful gift by him. Obviously I wish things weren’t so difficult for him and there are times it breaks my heart.
“People were rude and said things like: ‘I don’t think we should have those type of children at our school’.
“But it has made me more accepting of people with difference and I don’t judge a book by its cover.”
Former EastEnders star Kacey lives in rural Hertfordshire with her partner Darren Hales, a plumber, and their two children, Elwood, 11, and Blossom, 14.
She never suspected Elwood had autism until a nursery teacher took her to one side when he was three.
“I was really shocked,” she recalls.
“She’d noticed his black and white thinking, the fact he didn’t play with other children, his delayed speech, his repetitive behaviours and his rigidity.
“He couldn’t deal with change. If the room was set up differently he couldn’t even walk through the door.”
Kacey went to her GP who referred her to a local health professional.
“They monitored him and when he got to six he had the final diagnosis,” she says.
“He went to our local communication disorder clinic and I sat behind glass and watched my child being assessed by an educational psychologist, speech therapist and a child psychologist. It was excruciating.
“They gave us a diagnosis of Asperger syndrome and dyspraxia, which I’d not even heard of.
“It was a sad day, because you have a baby and you want things to be normal. You have to go through that grieving process where you think – this isn’t what I’d set out for.”
Kacey, who found soap stardom as EastEnders’ Little Mo and won countless awards during her six years in the BBC1 show, was riding high with her acting career at the time.
But she made the tough decision to walk away to concentrate on her family.
“I only did jobs with a short time commitment and only one a year,” she recalls.
“It would have been too disruptive for me to have had a chaotic schedule.”
Kacey set about learning all she could about autism, seeking help from Anna Kennedy Online and ADD-vance, a Hertfordshire charity that runs free parenting courses for families with children with autism.
She is now an ambassador for both charities.
“We came to understand a child with autism needs a routine led by them,” she says.
“So we got my son to write the script. ‘How do you want to go to bed? How do you want to do it?’
“It was difficult as he needed things to be done in the same order – for example, he didn’t like the water going on the toothbrush before the toothpaste.
Or it might be that a label on a pair of pyjamas was so irritating to him that he wanted to pull his skin off.
“So we wrote it down and stuck it up in the bathroom, so everybody who put him to bed, including nanny or grandad, followed the same routine. Once we did that, bedtimes were a breeze.”
Now that Elwood is 11, Kacey has been able to increase her workload.
For the past four years she has starred in ITV’s Grantchester as Cathy Keating, the put-upon wife of police officer Geordie (played by Robson Green).
And her latest feature film, We The Kings, won the best UK feature award at the Raindance Film Festival last year.
Yet her working days still require careful planning and Elwood’s routine is written out and pinned to the fridge.
Despite his ASC, Elwood attends a regular school. “He’s thriving – doing better than anyone ever predicted,” Kacey beams proudly.
“He has been captain of the rugby team. For a dyspraxic child that’s very unusual, but he works very hard at it.
“He also plays football and hockey, both at school and outside. His autism is actually quite helpful in his sport as his focus and commitment to winning are phenomenal.
“Academically he’s not top of the class – he’s brilliant at some things and awful at others – but with the correct support he’ll achieve what he needs to achieve.”
Kacey admits there have been times when she has found her patience tested by her son’s dyspraxia, which affects physical coordination.
“It’s irritating beyond belief when you have a child who is essentially so clumsy,” she says candidly.
“You know every mealtime is going to be carnage.”
One unexpected result of Elwood’s diagnosis is that it helped Kacey’s partner Darren realise he too is on the autistic spectrum.
“It’s been like a lightbulb moment and made us realise he thinks in a completely different way to everybody else, which is why I found him so fascinating and still do,” she says.
But as positive as she feels, Kacey admits she still has her concerns as Elwood grows older.
“But I try not to worry about the future. It’s going to be difficult and I’m prepared for that, but so much can change.
“What I do know is that Elwood has huge amounts of skills that are useful for this world.”
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