Each of Mary Robinson's
children was perfect at birth - then they were given the MMR vaccine.
Cassandra Jardine meets her
MARY ROBINSON likens
the mayhem in her home to wartorn Beirut; it continues from early morning
until late at night. "The children don't play together. They all want
to be the centre of attention and they fight."
Any parent with young children might be tempted to describe their home
like that, but this is different. Five of Mary's six children, aged between
three and 13, aren't just difficult and demanding - they are autistic.
She takes it for granted that, every week, she must change wet beds, put
radiators back on the walls, repair the loo, retouch the paintwork, explain
the children's black eyes to teachers and apologise to other parents if her
children have bitten or kicked theirs. "What else can I do?" she
shrugs.
The one thing she cannot do is relax. Thirteen-year-old Claire could be
wandering off, oblivious to danger; 11-year-old Tyson might be trying to
hatch raw eggs by sitting on them and Jordan, 10, could be in one of his
violent moods. Hayden, nine, who cannot speak, will be screaming for her while
three-year-old Leah is showing her a toy for the millionth time.
We meet while the children are at school, otherwise conversation would
be impossible. Looking at the prominently displayed photographs of their
angelic faces, the perfect order into which Mary has the sitting-room by
mid-morning and her calm exterior, it is hard to credit the chaos she
describes - or that she has a child who tells her: "When you are
asleep, I'm going to stab you with a bread knife."
Nights are hellish, with the children bouncing off the walls and
swinging from light-fittings. Weekends offer no respite: whereas other
children go to the park or play with friends, hers can't. "It's like
running a care home here," says her husband, John, "except we
don't get any time off."
But they do insist on escaping to the amusement parks and animal
sanctuaries near their home in Hayle, Cornwall. Such expeditions call for
steely nerves as, wherever she takes the children, Mary hears people
tutting about their behaviour and saying: "Why did that woman go on
having children if they are all handicapped?"
Had those women time to listen to her story - or she to explain it -
they would learn that none of Mary's children started off autistic; they
were developing perfectly normally until something caused them to regress.
Far from being someone to criticise, Mary Robinson deserves infinite
sympathy. She allowed her case to be made public last week and now is at
the centre of The
Great MMR Scare.
"I want to protect the children from too much attention," she
says, "but I could not believe it when I read that the Government is
spending £3 million on a campaign to make out that MMR is 'safe'. No one I
know will allow their child to have the triple vaccine, and since single
vaccines are not available, there will be epidemics of measles, mumps and
rubella - and children will die.
"It's all because of money. For the Government, it is cheaper to
give the immunisations together, so they aren't offering people a choice.
When a manufacturer is shown a single contaminated can of beans, the whole
batch is recalled yet, with MMR, the Government is quoting some questionable
research and not giving parents the benefit of the doubt."
As for the claims that autism has not increased, they leave her
speechless. "I was once a nanny and I used to work in a nursery. I
know that there are more autistic children around. When we go to special
centres, I meet parents who talk about their children behaving normally and
then changing - and some haven't even heard of the concerns over MMR."
Mary hadn't either when she had her children vaccinated. The triple
vaccine was introduced in 1988, so her eldest, Donna, who lives with her
grandparents, never had it; she is not autistic. The rest were immunised
and from that moment, in each case, she charts the onset of their problems.
In fact, only three of her children are included in the
legal action being brought by solicitors Alexander Harris against the five
drug companies that supply the vaccine. Claire had MMR too
long ago to be admissible and Jordan's case is complicated by prematurity,
but Tyson, Hayden and Leah have all had their medical records checked and
legal aid has been provided to bring their cases.
Other possible causes of autism can be ruled out. Mary was so anxious
not to have another problem child after Jordan that she had his genes
tested and later her own. No problems were found. Nor was any autism found
in their families - only asthma, often involved when MMR appears to have
caused problems.
Significantly, Hayden was given a brain scan as a baby - before he had
the MMR jab - and found to be normal. "Until he was 18 months, Hayden
was a lovely, placid child. At that age, he was saying: 'Oook, doggie'. But
within nine weeks of the vaccination, he had lost his speech and wouldn't
let me look at him; his whole personality changed."
Although reassured by the genetic tests, Mary was still keen to have
another girl when pregnant with Leah as Claire's problems seemed so much
less acute than those of the boys (although that could be because of her
high intelligence). When the longed-for girl was born, Mary was overjoyed
and everything went well until, two years ago, Leah had her MMR.
"By that time, there were rumours. Knowing that I had three sons
registered as autistic, no one in the medical profession drew my attention
to the idea that there was some concern. They said nothing. I find that
unforgivable."
So Mary went ahead and allowed Leah to have the jab and history,
heartbreakingly, repeated itself.
"You feel you've lost your child; it's just like a
bereavement," she says.
By this stage in our conversation, Leah has reappeared from her special
needs nursery. She is a charming child but her words come out strangely and
she rushes around frantically.
Mary was as baffled by the early signs of these changes in her hitherto
normal daughter as she had been by the onset of autism in her other
children. Then she picked up a magazine containing an article about a woman
with three autistic sons - and read about the concerns over MMR.
Immediately, she contacted Jabs, an organisation run by affected
parents, and was put in touch with the legal action group. "How likely
is it that I could have had five naturally autistic children?" she
asked. The chance was infinitesimal, she was told.
But Mary is not a campaigner. She doesn't have time for that, any more
than she can go to church to please the Mormons who keep coming round to
pray for her, or find time to train to be a social worker: "I couldn't
find anyone to look after the children, so I gave up."
All her considerable practical skills are devoted to giving her damaged
children as enjoyable a life as possible. "I told them all, early on,
that they are autistic and that everything they feel is normal for the way they
are. It's not fair, I tell them, that you have to try harder than other
children, but you'll get there."
She feeds them an additive-free diet and refuses to drug them to make
them more controllable. Nor will she take anti-depressants herself; when she
tried, she was shocked by the feeling of swimming through treacle.
Rather than spending the children's disability allowances on running the
house, she saves the money up for special toys - light pillars that produce
mesmerising bubbles, computers on which they can express themselves,
projectors that make patterns on the walls. Leah's room is a child's dream,
crammed with play equipment, none of which can be kept downstairs, as the
boys would destroy it.
And, despite the dents on the ceilings, the touched-up paint and
scribble on the walls, the house has a warmth to it. So does the garden,
with its aviary, rabbits and guinea pigs, trampoline and slides, all of
which take the edge off the hyperactivity that comes with autism.
Although she looks young for 38, the past few years have been gruelling
for Mary. Claire and Tyson's father left her when she was seven weeks
pregnant with Tyson; Jordan and Hayden's father left her when she refused
to put the boys in a residential home. Then she made an unsuccessful
marriage: "In a situation like mine, you are so glad of help, so
desperate for company"
To escape her husband and find a home large enough for the children, she
and John, whom she married two years ago, have moved twice in quick
succession. John, I say, must be a saint taking on all these children as
well as his own daughter, Leah.
"He isn't," she replies. "He has a bad back, which means
he can't work or run after them and he can't stand it for long. But he does
watch them for 20 minutes while I eat my dinner in the bedroom."
Since she began eating in peace, Mary has put on a stone and given up
smoking. She's pleased. "The stronger I am, the longer I can keep my
children at home."
Helping them is her over-riding concern and, every year, it gets more
difficult. "Jordan broods on his disabilities; Tyson has terribly low
self-esteem; Hayden I now accept will never talk. I just live each day at a
time," she says - never planning anything, her head constantly full of
a dialogue between the "angel" voice that encourages her to be
patient and understanding, and the "devil" which makes her want
to scream and give up.
The future looks bleak. Claire, she hopes, will be able to get a job but
Tyson, she fears, will be in constant trouble as he has no notion of
property. She doubts if Jordan will be able to leave home and Hayden may
have to live in an institution. As for Leah, Mary won't know for several
years whether, like Tyson, she will develop Asperger's syndrome.
When things get too much, she turns on pop music and fantasises. "I
would love to go on a holiday without losing one of them, to be able to
communicate with Hayden, and have Leah get no worse.
"Above all, of course, I want to have my children back as they were
- but I know that can't happen."
26
January 2001: [UK News] Mother of five children with autism to sue over MMR
jabs
23
January 2001: [UK News] Campaign to persuade parents that the MMR jab is
safe
21
January 2001: [UK News] MMR doctor links 170 cases of autism to vaccine
18
January 2001: [UK News] MMR jab was launched too early, says health chief
16
January 2001: Is MMR a shot in the dark?