Channel 4’s Alan Gardner reveals he has heart failure and says he wants to focus on his health not his Asperger’s. Áilín Quinlan meets him in Clonakilty
Two years ago, Alan Gardner was not only diagnosed with heart failure, he also discovered that he had just 20% of function left in one of his body’s most essential organs.
In fact, he says, he should probably be dead by now.
But if and when his heart does give out, he adds bluntly, he doesn’t want a funeral.
It will be a body bag and the crematorium for him, following which his ashes will be scattered in the grounds of the facility, he says, as we sit together in the lobby of the Park Hotel in Clonakilty. He is here to join the celebrations of Clon’s first anniversary as an autism-friendly town.
“I have a defibrillatorinside me to shock me back,” says the pink-haired presenter of the hugely popular Channel 4 series, The Autistic Gardener.
Multi-award-winning Gardner, who also sports his trademark spectacularly-painted fingernails, has Asperger’s syndrome, although he says, his condition wasn’t diagnosed until he was in his mid-50s.
His wife Mandy was diagnosed as having autism when she was 50, and their three children aged 27, 24, and 19 are all on the spectrum too, he says.
However, for now, his focus is on his health. “I’m more interested in my heart than in the autism at the moment,” he quips, “because it’s the heart that might kill me and not the autism”.
According to statistics “90% of people are dead within 12 months as a result of what I have and I’ve had it for two years. It’s controlled, it’s paced,” he says, adding that he knows when he’s had enough and it’s time to rest.
Not that he’s had much time for relaxing lately, given the whirlwind, whistle-stop tour of media interviews photoshoots and meet-and-greets as part of his trip to Clonakilty for a busy round of talks and functions marking.
I have no control
He’s currently on a complex regimen of medication involving nine drugs which he must take at different points of the day, but he’s staying on top of it. “In the two years I’ve missed only one tablet once.” Something he points to as a benefit of the organisational ability and sheer focus gifted to him by his condition. However, he has stipulated that the event of his passing, there must be minimum fuss. “I’ve had to control my life and I also have to control my death,” he says.
“ I will not have a funeral. I will have a non-funeral.
“If I’m at home I’ll be picked up and put in a body bag, and taken to wherever — a crematorium,” he says. And he expects his ashes will be spread in the grounds of the facility.
He refuses to worry about the future.
“At some point, the mother ship will pick me up and take me away again,” he says.
“I’m observing. I’m watching everything going on and I allow everything to happen. A rule I have developed is that I never worry about something I have no control over.”
I didn’t know I was autistic
Both his parents had passed away, he says, before it was suggested that he might be autistic.
“I was an autistic child and I didn’t know it. God I was weird.
“Everything was inside my head. I had no friends — well, I had a persistent friend who I had to get rid of lots of times. I’d tell my father to ask him to go away.”
His friends, he says, were primarily Lego and Meccano. Autism is a condition that doesn’t change as you age, he says, adding that to this day he gets excited about small things. “You greet the world with a childlike wonder. I sit on the plane and get a hell of a buzz when it’s taking of.”
It’s also a fact that his focus is steely — when he gets something into his head, it’s usually a done deal. “It’s all or nothing for me — if I was interested in politics I’d be the prime minister!” However, he’s atypical in ways, he says:
So what’s with the nails? I ask. “I love them,” he responds. As to why he paints them — and in different colours — well, he responds, why not?
“It only costs £3.”
He’s been painting them for 15 years and the level of abuse he gets from women over those multi-coloured finger-tips is, he says, “amazing”.
“I think they’re jealous! One woman said to me: ‘if you were my husband I’d divorce you’ — because of my painted nails!”
Yes, he’s different, he acknowledges.
“When I was at school I got beaten up a lot. The other kids sensed you were different. Adults see I’m different — the pink hair and the nails.”
An idea just pops into my head
His interest in gardening was awakened when his father gave him a cactus at the age of 15. Soon after he was given a seed catalogue. And that was it.
“People with autism have something that a lot of other people call a special interest. I refer to it as an intense interest,” he says.
“Lots of neuro-typical people believe it’s an obsession, but it’s not.”
These intense interests, he says, offer “a place of comfort, control and power. It means there is something we’re happy about. It starts with something popping up in front of you, and the cactus was one of these. An idea just pops in my head.”
He points to the tattoos covering his arms and peeping out through the collar of his t-shirt:
He asked for the cactus, he says, because he liked the plant’s shape. He later discovered that the shape of the plants, like the swirls of a snail shell or a pinecone, are mathematically sequenced — the Fibonacci sequence — a sequence of numbers which are expressed in the designs of nature. “All flowers and plants have a natural sequence, the trees have special systems so that each leaf gets enough sunlight, so a mathematical sequence is all through mature. Nature is a powerful thing.”
But, back to the cactus. “I saw a cactus in the florist and Dad bought it for me. Dad went to work and told them at work that I wanted a cactus. One of the men had a seed catalogue and my dad brought it back to show me and it was exciting.”
So exciting, he says, that he dug up his parents’ entire back garden, installed greenhouses, and started winning awards with those green fingers of his.
We’re not broken computers
Autism, he says, is not a deficit. “Most parents that we come across are terrified of the condition. They think, ‘oh, this is it,’ but they don’t really understand autism. Autism is not a deficit, but people see it as such. We’re not broken computers — we’re on a different operating system. I don’t think the professionals get it.”
How can you really have a true insight into the head of someone with autism unless you are on the spectrum, he asks. “I talked to one couple who had a son who loved football. They took him to everything but they said he never told them he appreciated it — they felt he didn’t thank them and they felt hurt. I said that basically he appreciated it very much and he loves them very much and he just doesn’t know how to show it.”
Parents with children on the autism spectrum try hard, but they can get discouraged about bringing their child out in public, he says, which is why he loves the autism-friendly climate of Clonakilty.
“As a parent, if you go to a supermarket with your child and your child has a meltdown because of the bright lights and the sounds, everyone judges him as a spoiled brat and some people will even tell you that.”
It’s the sense of judgement from other members of the public that so often discourages parents from bringing children on the autism spectrum into public spaces, he says. “ If you’re in an environment where the staff understand, it’s easier. The music is turned down lower and so are the lights, but it’s also about the fact that everyone in the building understands.”
He doesn’t feel he lost out by being diagnosed so late in life.
“Mandy is autistic too,” he says. She was diagnosed last year.
The question is, Gardner ponders, “If I was diagnosed aged 10 would I be in a better place now or a worse place?”