The emotional turmoil when the severely autistic son you’ve devoted your life to says he doesn’t need you any more
WALKING through the doorway into my son’s flat, I always take a deep breath to calm myself in anticipation of what I know is to come. Rory’s usually absorbed in his computer.
‘Hello, darling,’ I call out, before tentatively making my way towards the sofa.
On these weekly visits, however, I rarely get the chance to even settle into my seat before Rory glances over and, in his usual deadpan manner, says: ‘Goodbye, Mummy.’
That’s my cue to leave. Occasionally, I might get to spend a whole five minutes in my beautiful boy’s company before he sends me packing — enough time to ask how he is and say how lovely it is to see him.
But when he tells me ‘goodbye’, even if I’ve only just arrived, I’m expected to get up quietly and go, which I unvaryingly do. It hurts every time, but I know that, should I protest, my son — who I love deeply and who I’m certain loves me in his own way — would get agitated, which is the last thing I want.
Rory doesn’t mean to be cruel. He is 23 and severely autistic. His flat sits inside a residential facility, where he’s cared for around the clock.
With next to no language skills, saying goodbye is how he articulates that he doesn’t need me any more.
Of course, for a parent, having raised a child to adulthood who now says they can survive in this world without you is supposed to be the Holy Grail.
But I am the mother of a son profoundly affected by a condition that has robbed him of all hope of ever leading a truly independent life.
However surplus to requirements Rory considers me, I visit each week, wishing I could somehow do that little bit more. Not so long ago, this situation seemed inconceivable. During his childhood, I was always the person to whom Rory anchored himself for a sense of his place in the world.
It was me he wanted to wash, dress and feed him. When he was upset, it was my voice that gave him comfort. And I was the one who sat up with him night after night, because he barely slept.
He’d have me sit next to him for hours while he watched endless Postman Pat videos, or listened as I read aloud.
Where most children shower their mothers with physical affection, I learned to accept that allowing me to quietly share his sofa was Rory’s version of a loving hug.
Being his prime carer while my husband Ian, a British Airways captain, went to work was an exhausting role. But I embraced it, though it meant my own wants and needs came a very poor last.
KNOWING that I’m now able finally to enjoy the time to myself I so often craved is harder than I ever imagined it could be. Rory started rejecting my company last year, after he moved into this residential care home near our Norfolk home. It’s set in beautiful grounds on the edge of woodland, which I find comforting because Rory’s always had a thing for trees.
Ian and I always intended to keep our son at home with us — at least until old age would inevitably get in the way of us being able to care for him properly.
But coping with the physical and practical challenges posed by looking after someone who’s taller than you, but with the intellectual and emotional capacities of an 18-monthold, became too much. Imagine trying to wash the hair of a grown man while he thrashes around the bath in protest, like a recalcitrant toddler oblivious to his own strength.
The bigger Rory got, the more hopeless it became to attempt to calm him during a meltdown over something he simply didn’t have the language skills to explain.
Residential care isn’t new to Rory — he went to a specialist boarding school from the age of 14 and then an adult facility from 18, before its closure saw us move him to where he is now.
Previously, he would always come home for holidays and weekends, but when he moved to this new flat, he didn’t want to any more. It was as though some spark of independence was suddenly triggered on an instinctive, if not cognitive, level.
Every suggestion that he might spend some time at home with us has been met with a blank ‘no thank you’ ever since.
Letting go of being involved in Rory’s day-to-day care is hard. It’s something anyone with an elderly parent requiring specialist residential care will, I’m sure, relate to. But when the situation involves your son or daughter, I think it’s harder still — after all, as mothers, we start whispering in our baby’s ears that we’ll always look after them when they’re barely out of the womb. Looking back to when Rory was born — a second son following his brother James, now 25 — I could never have envisaged how family life would turn out for us.
In fact, there’s a photograph I keep tucked away in a drawer: it’s of me as a young woman, playing in a pool with Rory as a baby, on a family holiday shortly before his first birthday.
Just out of the camera’s sight were Ian and James, splashing around in the water.
We were on holiday in Malaysia — the first of many trips to beautiful, far-flung places that we planned to take with our boys.
Ian’s job as a pilot, and my previous career as cabin crew, meant travel was a boundless concept to us. We imagined our children would share a similar sense of adventure.
That afternoon, I was delighted when one of the hotel staff stopped cooing over Rory just long enough to offer to take a photo of us together.
Little did I realise it would become a memento of what turned out to be our only family holiday abroad.
That might sound a petty thing to mourn, but it’s just one example of the simple pleasures most families are able to take for granted that became beyond our grasp.
Even now, 22 years later, when I look at that picture, I immediately remember how it felt to be me back then: a happy, carefree mother who was beyond thrilled with her lovely, chubby baby boy.
Within a year of it being taken, my son was changing from the easygoing child who had delighted in splashing around in the water that day to a boy who found every twist and turn of day-to-day life the most terrible challenge.
What started with him beginning to sleep just three hours a night, utterly resistant to every sleep training technique out there, led to an unsettling realisation that, aged two, he still
hadn’t uttered his first words. After that, he began moving his hands in a strange flapping motion and everyday situations, such as stepping inside a shop or having to stop the car at traffic lights, suddenly became a trigger for him to scream out, long and loud, in ear-splitting distress.
We sought medical help and were passed between various paediatric experts and language and behavioural therapists.
Ian was my rock — the challenge of raising Rory united us. James — mature beyond his years — unquestioningly accepted this was simply how his brother was.
Rory was four when he was finally diagnosed with severe autism. I remember looking at him playing with some toys on the floor of the doctor’s consulting room and feeling indescribable grief. He was the same little boy I had arrived with at the hospital — but now, somehow, he was changed for ever. His condition could never be treated — from here forwards, it would only ever be managed.
That day, I vowed that Rory would always have me; that I would give up everything to care for him.
And for a long time, that’s exactly what I did.
But, oh boy, it was hard. Autism has been somehow romanticised in recent years: in TV shows and films, those affected by it are usually portrayed as savants — geniuses with limited social skills, whose brilliance is the payback for their inability to fit in.
While many people with autism fit into that dramatised cliche, someone like Rory is so far along the spectrum that his brilliant computer skills won’t make up for the fact that he struggles with simple tasks a two-year-old can master.
Rory finds the world a bewildering and often terrifying place. This condition robbed him of all but the most basic communication skills and caused profound learning difficulties.
He can’t even boil himself an egg or be left alone for a moment in his flat because he has no sense of danger.
Over the years, I’ve had to coax him down off the house roof and keep doors and windows locked so he doesn’t run out and into the road.
Staying at home was always the easier option compared to the stress of trying to go out.
And something as supposedly simple as getting a tooth removed involved an emergency hospital admission. The only option was to put Rory to sleep for the extraction — it took a roomful of medics to administer the sedatives needed to get him into theatre. But, besides the daily challenges of Rory’s diagnosis, more profound was how it cheated me out of a sense of peace as far as my child’s future was concerned.
With Rory, my concerns haven’t ever been: ‘Will he find the right girl?’ or ‘what kind of father might he make?’ — those imaginings ended with his diagnosis. The mantra that played on a loop inside my head was always: ‘How will he cope when I’m gone?’
THAT’S something I worried incessantly about for more than two decades. Only now, it appears I don’t need to fret about that quite so much.
Rory’s flat in his care home is lovely; I go to bed knowing he’s safe and well cared-for. I’m free to sleep, to go on holiday if I want to and to enjoy the social life and other simple pleasures that caring for a child with Rory’s allencompassing needs denied me.
And I do all of those things now. But, even so, however wonderful it is to see that he has found a way to live without me, letting go continues to be heart-rending.
Ian and I still advocate for Rory — being his voice in the world is how I get to look after him now.
But, after all those years I dedicated to my son, and no matter how happy I am to know he’s finally OK without me, those two words ‘Goodbye, Mummy’ will always be incredibly hard to hear.