A mother’s howl of anguish
Jan’s selfless care for her severely autistic son has cost her career and two marriages. Her story of just how little NHS help she gets will both enrage you — and make you count your blessings . . .
THE anguished howls that woke me in the early hours of the morning sounded more animal than human, but I knew instinctively that it was my son Luke, lost in a pit of despair. He is autistic, the result of the encephalitis he contracted as a seven-week- old baby, which left him with invisible brain damage. He also suffers from chronic anxiety which, untreated, can cause debilitating depression.
For the past 26 years, I’ve always slept on the brink of alertness, ears attuned to the slightest sound that might indicate Luke is in distress and about to wreak harm on himself or havoc on our home. Twice in his life he has tried to kill himself, so I live with the perpetual sick fear that a third attempt might prove successful.
But in the half-light of that morning, ten weeks ago, I stumbled from my bed and took perverse comfort in the fact that the unearthly noise Luke was making indicated that at least he was still alive.
I heard the rhythmic thud of something repeatedly hitting the kitchen floor and, opening the door, I realised it was Luke’s head. Laid out in front of him, with forensic precision, were two kitchen knives, two screw drivers and a sharp blade.
I did not realise until later that morning — when I saw the sofa splattered in blood — that Luke had already been slashing at his arms with the blade. He had also carved an obscenity into his leg, indicating the depths of his self-loathing.
He hadn’t spoken a word for the previous two weeks, and was inflicting physical pain on himself to deflect from the mental anguish that was torturing him.
It is a measure of how dreadful his torment is at times like this that he would rather suffer almost any amount of tangible pain than have to endure the tumult in his mind.
So what did I do when faced with this terrible scene? Did I run to the telephone and dial a wellremembered and trusted number? Did I scramble a team of highly trained professionals to swoop in and rescue my poor boy — and me — from this unbearable situation, so they could give him the urgent specialist psychiatric care, and me the rest, we so desperately need? No, I didn’t. I went back to bed. That help is not there — it never has been. I’m on my own with this problem, and totally out of my depth.
There was nothing I could do for my boy. He wouldn’t let me touch or comfort him, and made it clear he wanted to be on his own. All I could do was crawl back under the duvet and pray for him to get better. In time, he calmed down.
Two kind and well-meaning professionals, our GP and a mental health nurse, have seen Luke during the recent weeks of this latest crisis, but I suspect they, too, feel out of their depth. our doctor prescribed powerful drugs — intended to calm him, lift his mood and make him sleep — but they seem to just render him temporarily oblivious. It does not deal with his pain or the underlying cause.
The truth is our overstretched NHS simply has not got the resources — or, it seems, the expertise — to look after my son. It can take weeks, or months, for an appointment. I have to fight for everything, and I don’t always win. So I write now, in despair.
Prince Harry has brought mental health to the forefront of our minds by speaking out about the depression he suffered when his mother Diana died. While I do not want to demean the helpfulness of this brave gesture of solidarity with others who suffer the quiet torture of mental illness, what young men like Luke need are not words, but deeds. This is what our health service — focused on physical well-being — apparently cannot offer us. In a crisis, no care is provided, it seems, except medication.
My life revolves around Luke. I scratch by, barely coping financially or emotionally, as I am his support system. It has cost me my career and two marriages.
Before his birth and subsequent illness, I was the treasurer of a private merchant bank in Bristol, married to my first husband (Luke’s dad), who ran a successful courier company. We had a lovely home we’d built ourselves, set in a third of an acre of Wiltshire countryside.
Luke was conceived during a skiing holiday in Verbier, Switzerland. I intended to go back to work three months after his birth, but of course, I haven’t been able to work a day since.
I adore Luke with a fierce maternal love, but he is hell to live with and is the main reason for the breakdown of my first marriage, and the cause of my second divorce four years ago. Not many people can cope with this intense level of parenting. Now it is just Luke and me, battling against all the odds.
Luke has so many labels he once had business cards printed with all the letters after his name — he has a quirky sense of humour and a love of irony.
Aside from his autism, he has attention deficit hyperactivity disorder (ADHD), which, allied to his anxiety and depression, is an explosive mix. He also has Tourette’s syndrome — uncontrollable outbursts known as tics — and pica disorder, which means, like a dog, he chews and eats inanimate objects like TV remote controls, fabrics, wrappers, wine corks and so on.
I don’t think a day of his life has gone by when he hasn’t vomited — either through anxiety or because he has eaten an indigestible item or something tastes or smells ‘wrong’ to him.
Frustration often makes him violent, too. The walls and doors of our home near Chippenham, Wiltshire, are dented with the imprints of his fists. He lives in a perpetual mess, his bedroom is every mum’s nightmare and he has little short-term memory.
He can be funny, angry, aggressive, misogynistic, politically incorrect and pedantic.
He also has a sharp insight into his condition, which, in a sense, makes it harder for him to bear. Were his autism more severe, he would be blissfully oblivious to the differences which set him apart from others. As it is, he is painfully aware of them, while unable to change himself to suit other’s expectations of him. BuT Luke also has talent, wit, charm and an unerring ear for mimicry and impersonation. At his best, he is a hugely entertaining character. Given the right environment and the support of experts who understand his condition, Luke thrives. Without specialist guidance — adrift in the world — he sinks.
We know this because while he was at mainstream school he started to flounder and was expelled, aged 15, for retaliating
against the bullies who had systematically tormented him because he didn’t fit in. After that, he slit his wrists, his first suicide attempt — he thought he had failed at everything and it took this level of despair to finally get him a place at a special school in Wiltshire.
Here, because he was given the expert help and support he needed by the incredible headmaster, Mr Williams, Luke thrived, calling himself ‘the best of the worst’ instead of being ‘the worst of the best’. He became an ambassador for two national charities and proved himself as a leader and an inspiration to others with his conditions.
Six years ago, as youth patron for the charity Ambitious about Autism, he completed a five-day trek across the Arctic, mentoring pupils from his former school: this was filmed for the BBC and Luke provided the commentary. My PROUDEST ‘mum moment’ came when he was chosen to carry the Olympic torch in 2012. In 2011, he also went to Parliament to launch an initiative to make banking easier for people with disabilities.
However, since Luke left school at 18 he has desperately wanted to be independent and support himself, but this has proved impossible without the appropriate understanding.
He has the attention span of a flea, a toddler’s emotions and propensity for tantrums, and the strength and intellect of a man. Left to fend for himself in a world he finds totally alien, how can he survive?
He has had a succession of jobs, but as he has been beset by such paralysing anxiety they have been cut short.
He worked at a supermarket checkout, but suffered panic attacks which caused him to vomit, before being transferred to the warehouse, where his social anxiety and sensory overload became debilitating. Two years ago, Luke took an overdose of his prescription pills. My daughter Abbi, 23, and I found him unconscious. A note beside him thanked us for our ‘futile’ attempts to help him and concluded, heartbreakingly: ‘I am beyond help.’
It is a measure of his desperation that when the paramedics arrived and Luke was resuscitated, he reproached himself for failing in his attempt to end it all.
He wasn’t sectioned then — he should have been, for his own safety — as there was nowhere to take him. The paramedics read a book I have written about Luke while caring for him. I wanted them to understand that he’s not mad or bad, he’s autistic.
And so we have survived, until ten weeks ago, when this latest breakdown happened.
There was no obvious cause for it: Luke had been working on a self-employed basis with a local builder and was loving the job. He is adept at carpentry — a skill he has largely taught himself — and seemed to be coping so well.
The day before, we’d had a lovely family party to celebrate the birthdays of my dad and one of my three sisters.
Then it was as if a switch flipped in his head. The awfulness began. He could not leave his bedroom; nor could he sleep unless dosed to oblivion on his prescription pills.
I spoke to our GP, who, although kind and supportive, is out of his depth with Luke’s conditions. He prescribed antidepressants.
We soldiered on, Luke and I, until the night I came downstairs to find him howling like an animal, in such palpable mental pain that no parent can bear to witness.
The next working day, I consulted his GP and requested an urgent crisis referral to a psychiatrist. We waited three weeks for this appointment. It makes me boil with rage that there is no emergency care available for Luke.
The mental health nurse we saw was superbly caring, but has no experience of autism, so we again found ourselves in limbo. She said she would recommend that we should be referred to a specialist unit in Bath, with a psychiatrist equipped to deal with Luke’s needs, but first we must fulfil several criteria. What these are I have yet to find out.
The nurse has told us that we will have to ‘fight’ to get Luke this help. ‘Who are we fighting?’ I asked.
My whole life is a fight, I am exhausted with fighting. I find myself preparing to battle an unknown adversary as, once again, I pursue a relentless quest to get my son the help he needs. Broken promises for better help litter Luke’s life.
I am so angry there is such scant and inadequate support for those, like my beloved boy, who try so hard to embrace their difficulties and yet always live life close to the edge.
If Luke had lost his legs when he was so ill as a baby, we would have had immediate and lifelong care. But as his conditions are invisible, we are isolated. Consequently, Luke feels ashamed of himself. OfTEn, I ask myself how he’d cope without me to manage him, and the answer scares me, because I think he would either be homeless, dead or in prison.
A friend of Luke’s, a young woman with similar difficulties to him, took her own life two months ago and, in the midst of our shocked grief I begged Luke: ‘ Please, please tell me you’d never do that.’
The answer he gave chilled me. He said: ‘I can’t promise you I won’t.’ It was the most harrowing thing a child could say to a parent. It utterly broke my heart. How bad does it have to be before help is forthcoming for my Luke and all the other Lukes out there?
It took eight exhausting weeks before our GP finally received the written recommendation from the mental health team that Luke requires an ‘urgent’ referral to the specialist unit in Bath.
Our GP agreed to try and secure the funding for us. When I asked how long this will take he replied: ‘ It’s a waiting game.’
you may consider me cynical, but I believe those who run our inadequate and overstretched mental health services take the view that if they procrastinate long enough, the problem could just be solved for them. It might simply be too late.