Failed by the NHS, Luke’s autism left him suicidal. Now, he’ s thriving-thanks to the kindness of strangers and a mother who NEVER gave up
LUKE DICKER doesn’t converse. He entertains. Spending an afternoon with him is like being in an audience of one at a comedy performance. He rattles through a repertoire of impressions —– he has an unerring ear for accents and also creates the personae to go with them.
Gags are woven into stories; he’s a terrific raconteur. Occasionally, he bursts into song in a flamboyant, operatic tenor.
‘i can’t sing in my own voice, but i can mimic most voices,’ he explains. ‘i can sing all the parts in Les Miserables. i can sing the theme tune from Frozen in 21 different Disney voices.’ He demonstrates.
The paradoxes that make up Luke’s personality are both baffling and complex. On a good day, he talks incessantly. Always loud, often inappropriate, he can be, by turns, outrageous, pedantic, erudite, self-aggrandising, charming and utterly hilarious.
Yet, when anxiety grips him, he retreats to his bedroom, into a world of impenetrable silence from which it is impossible to rouse him for days, weeks; sometimes months.
Luke’s brain is a repository of facts. He has a prodigious memory for subjects that interest him — among them Formula 1 racing and World War ii — but he forgets people’s names, where he’s put his car keys, or to take his pills.
His heroes are Nigel Mansell, Winston churchill and the Queen. ‘She does the hardest job in the world. Non- stop meeting people and talking to them is extremely tiring. More physically draining than working on a building site,’ says Luke, and he has done it.
His practical skills — in craft, building and joinery — are prodigious. The home in Wiltshire he shares with his mum, Jan, 60, is overtaken by his current Batman obsession.
He’s making a costume, accurate to the tiniest detail; the materials and blades for cutting set out with surgical precision on the dining table.
Why Batman? ‘Because i’m eight years old!’ he bellows. (Actually, Luke is 26.) ‘All men are eight at heart. Who doesn’t think Batman is the coolest ever character?’ cue Batman impersonation. Luke has autism, which accounts for his obsessions; his extraordinary retentive memory; his adherence to ritual; the swings between manic highs and debilitating lows. The worst aspect of his condition, he says, is the acute anxiety that afflicts him. At his most desperate, he has attempted to take his life three times. HE HAS so many ‘labels’ that he once had business cards printed with all the letters after his name.
Ticks, Tourette’s, attention deficit hyperactivity disorder, pica disorder (which means he eats inanimate objects such as TV remote controls and tissues), seizures — he is at times beset by all of them.
And he cannot remember a day of his life when anxiety (or, perhaps, the ingestion of so much paper and plastic) hasn’t made him vomit. His teeth have taken a battering.
‘ They’re worn down to nubbins!’ he cries, affecting a West country brogue.
This is my second visit to Luke’s home. When i came to see him a year ago, he was unreachable, mired in a pit of despair.
Jan had invited me to meet Luke then. it was her hope that by highlighting his plight in this newspaper, help might be forthcoming. For a year we kept up a correspondence.
But nothing, it seemed, could lift the dark cloud that enveloped Luke, and NHS provision was grossly inadequate.
When i made that first visit, Jan had explained that five weeks earlier, Luke had had a breakdown. She was woken in the early hours of a morning in March 2017 by the sound of him howling, and came downstairs to find him banging his head against the kitchen floor.
‘Laid out in front of him were two kitchen knives, two screwdrivers and a sharp blade. i did not realise until later that morning — when i saw the sofa splattered in blood — that he had been slashing his arms with the blade. He had also carved an obscenity into his leg, indicating the depths of his self-loathing,’ she remembers.
‘That morning, he sat on the floor making a noise that was more animal than human, and i was powerless to reach him. He would not let me touch or comfort him. He told me he just wanted to be left alone.’
There was no one to whom Jan could turn; no crash team of medics to summon, no emergency psychiatric helpline. ‘All i could do was go back to bed and pray,’ she says. ‘Luke was having a mental breakdown and i was totally out of my depth.’
The episode signalled the start of a year’s decline in which Luke barely left his bedroom or spoke. He slashed continually at his arms and legs with blades; the same blades he is now using to carve his Batman outfit.
He is painfully self- aware, conscious of his differences from other people.
‘i couldn’t see anyone,’ he says. ‘i couldn’t leave the house. i was in this horribly low place and i was self-harming in order to feel something other than the paralysing anxiety that caused the breakdown.
‘i’d rather lose a limb than suffer the level of anxiety i get with autism. i don’t mind physical pain. i just wanted to feel a different sensation from the anxiety that was robbing me of my ability to function.
‘And the self harming gave me a reason to hate myself: “i’m such an idiot feeling this way, and this is justification.” it is perverse logic, but, for some reason, it helps.’
As he retreated into his world of silence, NHS mental health services failed Luke grievously. ‘Two fantastic and well-meaning professionals, our GP and a mental health nurse, saw Luke during the first weeks of his crisis,’ Jan says.
‘Our doctor, who is not an expert in mental health, prescribed powerful drugs — intended as a temporary measure to calm him, lift his mood and make him sleep — but the cocktail seemed just to make him oblivious. it did not deal with his pain or the underlying cause of it.’
Although there is a specialist autism unit across the county border just 12 miles away in Bath, Luke was told he was not eligible to attend because he lives in Wiltshire.
‘it was frustrating,’ he says with understatement. ‘instead, i had to see a different person for every part of me that doesn’t work properly: a dentist because i chew plastic, a gastroenterologist for my vomiting, a neurosurgeon for my fits and a psychologist and a psychiatrist for my anxiety.’
The wait between each consultation was interminable. it was to be eight months before his first appointment with an NHS psychologist, which was cancelled at the last minute without explanation.
Meanwhile, help had arrived from an unexpected source. Jan had written a book about Luke’s condition, and American psychologist Dr Louis Todd Teller — having read it and incorporated some of its contents into his own work — realised how scant the provision of NHS mental health services is.
Knowing Luke had reached crisis point, he offered to treat him free of charge if he could get to America. But, at that point, Luke was suicidal and too anxious to make a long-haul flight. So instead, Dr Todd Teller set up a crowd-funding page on social media to help pay for private psychoanalysis for Luke near his home.
‘Without this kindness, i don’t think Luke would still be here,’ says Jan. ‘i’d love to thank Dr Todd Teller for saving Luke.
‘i still can’t believe someone we’ve never met cared enough to help us.’
The £2,500 donated, mostly by strangers, funded more than 30 consultations with Bristolbased psychotherapist Neil Keenan, who specialises in treating autism.
it seems that these sessions, combined with a change in Luke’s medication, have helped haul him back from the abyss.
For now, the old Luke — funny, voluble and fizzing with restless
energy — has re- emerged. ‘ He’s gone from zero to 100 per cent,’ smiles Jan. ‘I’d been desperate, but then a month ago he suddenly wanted to get out of bed.
‘Every day I’m really, really happy he’s back, but I wish I could take him down a notch. He’s so full-on it wears me out. He’s noisy, messy . . .’
‘ There’s no amber light, is there?’ puts in Luke. ‘It’s either red or green.’
Jan, who also has a daughter, Abbi, 24, has devoted her life to Luke since he contracted lifethreatening encephalitis as a seven-week-old baby. This caused the brain damage that she believes precipitated his autism.
Before his birth, life was gilded. She worked as treasurer of a private merchant bank and her first husband — Luke’s dad — ran a successful courier company. They built a beautiful home in a third of an acre of Wiltshire countryside.
But the demands of caring for Luke proved too much for both her first and second husbands.
‘I was forced to make the choice between my husband and my son, and no mother should be given that ultimatum once, let alone twice. Of course, I wanted love for myself, but not at the cost of my son.’
Luke’s condition set him apart as a child. He floundered at mainstream school and was expelled, aged 15, for retaliating against the bullies who tormented him.
After that, he slit his wrists in a suicide attempt. It took this level of despair to get him admitted to a special school in Wiltshire, where he thrived, mentoring fellow pupils on a trek across the Arctic and providing the BBC commentary for the show.
He was chosen to carry an Olympic torch in 2012, and he has launched initiatives to help make banking easier for those with disabilities: all proud moments for the family who love him.
‘And I realise I’m one of the luckiest people in the world to have such a loving and supportive family and friends,’ he says, ‘because without them I might not survive. I could be homeless; dead. I certainly wouldn’t thrive.
‘Mess follows me everywhere. I’d forget to eat, I wouldn’t brush my teeth for weeks. I’m not good with money. Impulsive spending is one of the traits of my autism.
‘But Mum manages my life for me. She’s my hero and though I’m liable to take her for granted, I know she’s the most wonderful mum in the world.’ TEARS are blurring Jan’s eyes. This is Luke’s second eulogy to her in an afternoon. He is at once completely dependent on her and keen to protect her. ‘ I’m looking forward to caring for her,’ he says, touchingly; yet he is barely able to care for himself.
Although his IQ of 133 places him in the top 2 per cent of the population, acute anxiety attacks have prevented him from holding down long-term jobs. Stints working as a builder and carpenter have been punctuated by breakdowns that have floored him.
‘You can’t work. You can’t focus,’ he says. ‘ You wake up, but you can’t get out of bed. There’s this horrible despair. If someone had told me this time last year that I had terminal cancer and had two weeks to live, I wouldn’t have minded. At least it would all have been over. And I can’t discount feeling that way again.
‘I still sometimes think if I popped my clogs it wouldn’t be the end of the world. But I think I’m better equipped to deal with suicidal thoughts now, because of the sessions with Neil.’
Nothing is expurgated from Luke’s stream- of- consciousness monologue and his views (often politically incorrect) are delivered at megaphone volume.
He calls his girlfriend Leena, 22 — who is part Jamaican, part Welsh — Cadbury, and when I say that might be construed as offensive, he looks stricken. ‘ But she is the colour of Cadbury’s milk chocolate,’ he explains.
He deals only in the literal and the straightforward. Nuance and suggestion are lost to him.
Leena works with people with disabilities, which gives her an insight into Luke’s condition. He shows me a photo of her graduation in which he is shaking her hand — as he does not like hugs.
They have been together twoand-three-quarter years (Luke is punctilious about such detail) and they’ve talked about a future together.
‘We went to Disneyland, Paris,’ he confides. ‘I bent down on one knee . . . and tied my shoelace!’ He roars with laughter. For half of their relationship he has been in the grip of the breakdown; it is testimony to Leena’s steadfastness that she has stayed with him.
‘We’ll stay together,’ predicts Luke, confidently. ‘And I’d like to be a dad. I think I’d be great at it. I’d be quite happy to be a stay-athome dad. I’ve got a little godson, rupert. I push him around in his toy car making Formula 1 noises. I’m good with kids.’
He’s right, concurs Jan. He is good with kids. ‘ But how would you manage a baby?’ she asks him. ‘Though you’ve got lots of skills, none of them is domestic. And imagine if you had another Luke!’ She rolls her eyes and smiles.
It is a measure of Luke’s current optimism that he is thinking ahead with hope.
Jan does not discount the idea of being a live-in granny. ‘For the love of Luke, I’d do it,’ she says.
‘When I chose Luke over my husbands, I knew I’d be tied to him forever. You never abandon your child. That is what love means.
‘ You go on loving, even if it costs you far more than you ever get back.’
Life At The edge And Beyond, by Jan Lane (formerly Greenman), is published by Jessica Kingsley.