Journalist and film-maker, Mikey Kay has been openly discussing his life with older brother Spencer, who is autistic. Saskia Harper interviewed Mikey about his new documentary: My Autistic Big Brother and Me.
Following the fight of one family to access support for their brother and son, My Autistic Big Brother and Me has struck a chord with viewers around the country, showcasing the profound effect the outdoors can have for people on the autistic spectrum.
After a successful career in the Royal Air Force, Mikey Kay made the leap into broadcast journalism. It was through this he turned his hand to film-making, which led to the creation of his hit BBC documentary: My Autistic Big Brother and Me.
The film focuses on the lives of his brother, Spencer, and their mother, Nicola, who spent her life caring for him.
“I started filming Spencer when we were up the mountains, because his reactions were so wonderful,” remembers Mikey.
“It got some amazing responses online and that led me to make a teaser. People started asking me when the main film was coming out. I hadn’t thought about that, but that led me to think about doing a bigger documentary.”
Spencer is autistic and, as the documentary showcases, thrives in the outdoors, scaling mountains like it’s second-nature.
“He has an innate abundance of energy inside him,” Mikey says. “He’s got thighs like a Tour de France cyclist.
“In the mountains, he can be by himself and purge his energy, but also download everything that’s in his mind. When you’re in the car after and he’s quiet, he’s in his happy place.
“What he gets from the mountains, and what I get from seeing him in the mountains is something really special.”
The film is dedicated to Mikey and Spencer’s mother, Nicola, who died of cervical cancer in 2009. It highlights the struggle that many parents of autistic children face when trying to access support.
“It began as something about Spencer, but then shifted into a legacy to my mum because of her fight to keep Spencer from being institutionalised, all of her life,” Mikey explains.
“I thought that there’s a really important story here, about Spencer and his fitness, walking in the great outdoors as therapy, the fact that mum fought all her life to keep him from being institutionalised, and the evolution of human rights for adults with learning disabilities. It came together as a really powerful documentary.”
Exploring the different aspects of life for families who have an autistic child or sibling, the film places a particular focus on the importance of public perceptions, and the fight many families experience to ensure their family member can live at home.
Under the UK Mental Health Act 1983, autism is considered to be a mental disorder, which can have devastating implications for autistic people and their families when seeking support, as seen in the documentary.
“I think what’s also unique is it’s about an adult, and the way that support dissipates for autistic children and children with learning disabilities when they leave school and get to the age of 18,” Mikey says.
“This is a job for life for parents, it never ever stops.”
“The feedback has been incredible. I’ve had messages from families, siblings and professional care-givers saying what they saw in the film will help them improve and take their work forward. It’s been overwhelming and emotional, but also I feel like I’ve hit on something and want to do more.”
The film doesn’t just tell the tale of Mikey and Spencer’s mother, but also of the millions of unpaid carers around the country, caring for their loved ones every day and saving the UK government almost enough money to fund a second NHS.
“Mum ignored herself, really,” explains Mikey. “She didn’t go for a smear test for 23 years and then I came back from a tour of duty in Iraq and found out she had a stage three tumour on her cervix.”
Demonstrating the realities for many carers, who often put themselves second, the film also pushes for change, to provide ample support to people on the autistic spectrum, their carers and their families.
“I’m hearing stories that are mirror images of what mum and Spencer went through,” Mikey continues. “Some mums are saying that the film was the ticket they needed to go to the doctor, book in for a cervical screening and look after themselves.”
Receiving hugely a positive reception online, the documentary breaks down barriers and showcases the incredibly close bond between Spencer and his siblings.
“Try and look at people like Spencer through a non-judgemental lens,” urges Mikey. “Society has made us conform to a certain optic of what someone should be, and not everyone is like that. But, that doesn’t mean they should be treated any differently to anyone else.”
My Autistic Big Brother and Me is available on BBC iPlayer until 30 April. To watch, click here.