One evening
in a rare, brief break from the chaos of looking after our severely
autistic son, my husband, Derek, and I caught a glimpse of a TV nature
documentary.
On
the screen, a cuckoo fledgling was gradually taking over the nest of
two sparrows who were working themselves to exhaustion to feed the young
interloper. As the cuckoo grew bigger, more demanding and aggressive,
the sparrows became more depleted and careworn.
I remember looking at Derek: we both shared the same unspoken thought. This was what our lives had become.
Giles,
our handsome, beloved only child — my longed-for son, born after a
succession of miscarriages — was so troubled by his condition that there
were times when I’d cower in a corner as he rained blows down on my
head.
Giles, our handsome, beloved only
child — my longed-for son, born after a succession of miscarriages — was
so troubled by his condition
When
Giles reached puberty at 11, his strength and violence escalated. He
also suffered from severe epilepsy. While I didn’t wish the misery of a
seizure on him, when he was lashing out at me, I’d hope that if one was
coming, it would arrive sooner rather than later and give me a few
minutes’ remission from the assault.
I
often cast my mind back to the day in 1975 when, at the end of a
particularly draining tantrum, Giles, Derek and I had collapsed together
in a heap on the floor.
Giles celebrates his birthday in 1967. He had already been diagnosed autistic
In 1962, barely a year before Giles
was born, I had set up a technology company with just £6. When my
company peaked in the 1980s, I was worth £150 million
Derek,
then a physicist who worked for the science branch of the civil
service, and I lived with our son in a house in Amersham,
Buckinghamshire, with a large room with a high ceiling and open beams.
I
remember looking up and thinking I could tie a noose to a beam, put
Giles’s head through it and tell him to jump over the railings. He would
do what I asked. He’d perceive no danger. Then Derek and I would
follow.
The
suicide pact would end all our problems, which seemed then both
intractable and endless. They would not finish when Derek and I died.
When I imagined a future for him without us, his most devoted
protectors, I felt only despair.
So
I voiced the awful thought. ‘We could take ourselves out,’ I said to
Derek. Did I mean it? Certainly, at the time, it was a serious
proposition, perhaps the one certain way the three of us could achieve
peace. I had already been tempted enough to buy a guide — banned in the
UK then, but available in America — to voluntary euthanasia.
Portrait of the philanthropist: Dame Stephanie Shirley
Derek
listened calmly. His only objection was that it would be wrong; not for
us, but for Giles. For him it wouldn’t be suicide, but murder. That was
when we dropped the idea; not with any sense of acceptance or hope, but
simply with a heightened form of despair.
I
voiced the awful thought. ‘We could take ourselves out,’ I said to
Derek. Did I mean it? Certainly, at the time, it was a serious
proposition.
Meanwhile,
work had become both a necessity and my salvation. In 1962, barely a
year before Giles was born, I had set up a technology company with just
£6. When my company peaked in the 1980s, I was worth £150 million. I
found it hard to believe it at the time, but I was the 11th-richest
woman in the UK.
To
the outside world, my life was to be hugely envied, and I was an
unmitigated success. Those who knew me, however, would not have swapped
places with me for the world.
Needless
to say, I would have traded all the wealth and professional accolades
for Giles to have been an ordinary child, with a happy, uncomplicated
existence.
His only interests seemed to be
bouncing up and down — he destroyed two cots in quick succession — and
tearing paper (books, newspapers, money, vital correspondence) into tiny
strips. He went to a special weekly boarding school in Buckinghamshire
at six
Life
was a continual struggle and we were often at breaking point with a son
at the lowest end of the autism spectrum — Giles could not speak, would
never function autonomously and would always be dependent on others’
care.
My
little boy must have been eight-months-old when we first began to worry
that he was developing slowly; not physically, but in his behaviour. He
was slow to crawl, slow to walk, slow to talk; he seemed reluctant to
engage with the world around him.
These
concerns took time to crystallise. The first time I went to a doctor
about them I couldn’t even admit to myself what was worrying me and I
asked instead about the ‘funny shape’ of his head — while I was actually
concerned about what was going on inside it.
Giles was not correctly diagnosed at
first. We were told, after tests, that he had a degenerative brain
disorder. At two-and-a-half he spoke — a few words, mainly nouns — then
he retreated into wordlessness, which never lifted, and communicated
thereafter only in grunts
Giles
was not correctly diagnosed at first. We were told, after tests, that
he had a degenerative brain disorder. At two-and-a-half he spoke — a few
words, mainly nouns — then he retreated into wordlessness, which never
lifted, and communicated thereafter only in grunts.
He
was three-years-old when we were told: ‘Your son has autism.’ Nothing
can capture the sorrow that flooded me. This was my son, my adored,
beautiful Gilesy.
We
knew little of the condition, other than that it was related to
learning disability. But I remember a feeling of dread. And everything
we learned, thereafter, was like a skewer through our hearts.
We’d
been advised to put him in an institution and ‘start our family anew’.
Instead we decided to devote our lives to him: he would be, we resolved,
our only child.
His
difficulties grew. My lovely placid baby became a wild and unmanageable
toddler who screamed all the time. He showed no interest in me or
Derek, and never once raised his arms to be picked up by either of us.
His
only interests seemed to be bouncing up and down — he destroyed two
cots in quick succession — and tearing paper (books, newspapers, money,
vital correspondence) into tiny strips. He went to a special weekly
boarding school in Buckinghamshire at six, and for a while he seemed to
flourish. But adolescence brought an escalation of his problems — and
ours. He had episodes of head-banging — he would hit his head so
violently against glass doors and windows that they would crack.
He became a danger to himself — and us. One day, finding my cigarette lighter, he set fire to our bed.
We’d
been advised to put him in an institution and ‘start our family anew’.
Instead we decided to devote our lives to him: he would be, we resolved,
our only child.
There
were times when, driven by desperation, I would cast around for any
shred of hope. I considered having Giles exorcised of the evil spirits
that seemed to possess him. I even thought about training a sheep dog to
corral him, as every time we left the house I’d have to grasp his wrist
like a gaoler, to prevent him from running away.
I
could not find a secondary school that would take him. So we gave up on
school and he stayed with me at home while I worked. Derek and I
worried about him ceaselessly, in different ways. I, working from home,
could see the benefit in giving Giles sedatives to calm him during
violent outbursts. Derek, working away from home, argued vociferously
against them.
He deplored the deadening effect they had on our son, while I craved the temporary peace they afforded me from his meltdowns.
The
subject continued to provoke terrible rows in which Derek would argue
that Giles’s needs had to come before ours, and imply — very hurtfully —
that I was putting my business before my son.
Meanwhile,
I would argue that it simply wasn’t possible for me to manage Giles
without some kind of medical intervention. I would have given up work
altogether, for ever, on the spot, if it would have done Giles any good;
but it wouldn’t.
We
would argue until we could argue no more, or until some crisis
involving Giles distracted us, and then we would fall into miserable
exhaustion. Every waking moment when we weren’t working was devoted to
clearing up after Giles or trying to forestall the disasters he seemed
intent on causing.
We
had bolts on all the windows and locks on all the cupboards (although
most things we possessed were broken anyway). We lived in a perpetual
state of high alert.
And
Giles just grew bigger, his rages stronger, his seizures more alarming.
The constant strain — we never had time for ourselves, let alone each
other — drove us to breaking point. Derek and I teetered on the edge of
an abyss. Soon after the day when I’d looked at the rafters and
contemplated ending our lives, in the long summer of 1976 when I was 43,
I broke. The strain had shown for a while. I was tense, irritable,
joyless; smoking 60 cigarettes a day.
We would argue until we could argue no
more, or until some crisis involving Giles distracted us, and then we
would fall into miserable exhaustion
Then
something frightening happened. I started to suffer from vertigo. If I
was driving over a bridge the road seemed suddenly frail and narrow; the
drop below a huge, gaping abyss. It happened again and again. The fear
loomed over me that I’d plunge downwards.
I went to a little hospital in Cheam, Surrey: I was in the throes of a complete mental breakdown.
I
suppose there must have been a momentary relief in this unconditional
surrender, after all the years of believing that no challenge in the
world was too great for me to overcome. My complete recovery was
painstaking, but after a few weeks I was well enough to go home. During
my absence, however, Giles had gone into a ‘subnormality’ hospital,
where he spent the week, coming home for weekends, which would
eventually, we hoped, enable him to move into semi-independent living.
But it didn’t work out. Giles spent the next 11 years in a locked ward
before that happened.
Soon
after the day when I’d looked at the rafters and contemplated ending
our lives, in the long summer of 1976 when I was 43, I broke. The strain
had shown for a while. I was tense, irritable, joyless; smoking 60
cigarettes a day
By
this time, he had become completely unmanageable: at times a raging,
strapping, violent 6ft teenager. The angst that Giles caused put Derek
and my relationship under intolerable pressure.
In
the summer of 1998, Derek and I agreed to separate. But then, in the
October of that year, when he was just 35, Giles died, suffering a fatal
epileptic seizure during the night. In the instant that Giles died, my
world changed irrevocably, and there is no need to say that I would
relinquish every penny I own to have him back with us again.
It
was as if a light had gone out. Nothing can convey the desolation of
losing my tormented, beautiful son, and the inner howl of despair has
reverberated through the rest of my life.
For
35 years, my every thought, waking and sleeping, was coloured in some
way by my knowledge that my son needed me and by my longing for him to
be happy and safe. Every thought since has been marked by the awful
truth that he is dead.
The ONLY consolation is that our small
marital differences were consumed by an awful grief that, in its own
way, united us. They say that the death of a child kills most marriages;
I think ours survived
The
ONLY consolation is that our small marital differences were consumed by
an awful grief that, in its own way, united us. They say that the death
of a child kills most marriages; I think ours survived precisely
because, at the moment of bereavement, it was in trouble.
Neither
Derek nor I had any expectations of the other, and what half-comforts
we were able to derive from one another came, therefore, as a welcome
surprise rather than a disappointment.
But
it was a painfully slow rebuilding process, putting back together not
just our relationship but our two broken lives. Each of us adopted a
quite different approach.
Derek
resolved that, having had his life poisoned by autism for 35 years, he
would never again give the subject a moment’s thought. I found succour —
I still do — in helping those with the condition.
So
what drives me now, as I approach my 81st birthday? It is the urge to
make a difference in the lives of those with autism. I want to devote
the rest of my life to helping people avoid the agony we went through
I’ve
given away more than £67 million to projects over the years, and prime
among them are those that support children and adults with autism.
A
school I founded, Prior’s Court near Newbury, Berkshire, is perhaps the
project closest to my heart: next Saturday, September 13, it will have
been open 15 years and, as well as providing schooling for 70 non-verbal
autistic pupils, it offers college places for 18 young adults. They
receive training that often leads to jobs: in animal husbandry,
kitchens, laundries.
Heartbreakingly, my own dear Giles died almost as Prior’s Court was opening.
So
what drives me now, as I approach my 81st birthday? It is the urge to
make a difference in the lives of those with autism. I want to devote
the rest of my life to helping people avoid the agony we went through.
So what drives me now, as I approach
my 81st birthday? It is the urge to make a difference in the lives of
those with autism. I want to devote the rest of my life to helping
people avoid the agony we went through
The
reconciliation between me and Derek was uneasy at first and it was a
slow rebuilding process over months and years. Our relationship will
never return to what it was but we are happy again. I enjoy swimming two
or three times a week. Derek played tennis until recently. We both love
music and the two of us have a good quality of life together.
We
will never recover from the loss of Giles, of course. We’ve merely
grown used to the pain, which we bear in our different ways. But after
all these years, there is comfort, as we grow old, in bearing it
together.
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