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Why are
my five children autistic?
(Filed: 01/02/2001)
Each of Mary Robinson's children was perfect at
birth - then they were given the MMR vaccine. Cassandra Jardine
meets her
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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
- all five 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."
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