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Five-year-old Charin Corea was being his normal hyperactive self alongside
his parents in the disability queue at Heathrow Airport when an immigration
officer screamed at him to keep still. Charin has been barred from a takeaway restaurant's play area. He has also
been verbally abused in the high street, told to wait outside in the garden
so he wouldn't disrupt the Christmas play, and forced to sit on his own during
a Christmas party. All because he is autistic and has a communication disorder.
His parents, Ivan and Charika (above, with Charin), became so angry at the years of frustration they faced in fending off ignorance and trying to secure a basic education and speech therapy for Charin, that they began to complain. They wrote hundreds of letters to MPs, business people, local politicians,
voluntary organisations and celebrities. "We were so passionate about it and driven to raise awareness about the
condition that we have not stopped," says Mr Corea. At first, no-one replied, but eventually their perseverance paid off. MPs wrote
back to share stories of constituents with similar concerns; there was an adjournment
debate in the Commons; and, just before the general election, 153 MPs signed
an early day motion backing the Coreas' suggestion to make 2002 Autism Awareness
Year. The British Institute for Brain Injured Children and The Disabilities Trust
took joint responsibility for organising the year, an idea already backed by
240 other bodies. The year will include fundraising, regional seminars, awareness raising events,
national days of prayer for autistic people, and two major conferences. There
is already an Autism Awareness 2002 website, launched in October by Health Minister
Jacqui Smith. Mr Corea wants the government to address the shortage of speech therapists
and teachers trained to work with autistic children, and perhaps set up specialist
autistic units that could each help a cluster of schools. Thanks to the family's persistence, Charin himself is now getting the help
he needs at his primary school. But the wider levels of ignorance about autism still cause his parents distress. "Charin has had to face a lot of instances where people still don't know
what autism is," says Mr Corea. One of the concerns parents and charities hope will be addressed during the
year is the frequent failure of professionals to diagnose autistic spectrum
disorders, particularly those with Asperger syndrome. Jean Burgess, from Stroud in Gloucestershire, has a 28-year-old son with Asperger.
Robert was only diagnosed three years ago. She had originally been told he was
manic depressive. "A lot of psychiatrists are really not trained in Asperger," she
says. "GPs are even worse. They do not understand Asperger at all." Because her son does not have a learning disability, he receives no training
that might help him become more independent, and just a couple of hours a week
of outreach support. "He would almost be better off if he was more disabled," says his
mum. "My son is desperate to learn how to connect with other people. He
wants social skills and there is nothing." Carolann Jackson, from Colchester in Essex, has an 18-year-old daughter, Nita,
who has Asperger syndrome. She has a similar story to tell. "Nobody knew what was wrong with my daughter. Psychiatrists, doctors,
paediatricians, everybody basically said 'bad parent, bad parent'," says
Mrs Jackson. Nita was eventually diagnosed at the age of 15. Once an autistic person reaches adulthood, their problems only increase. A report by the National Autistic Society (NAS) for its Autism Awareness Week
2001* found only 12 per cent of autistic people towards the higher end of intellectual
ability were in full-time paid employment. This dropped to two per cent of those
with more severe learning impairments. "I know one lad who has a double first in economics but he has been out
of work for seven years," says Mrs Jackson. "The solution is to change hearts and minds. Make allowance for difference. "My daughter Nita looks beautiful, slim, attractive, clever - she has
just had a play produced at Brentwood Theatre. But she can't work." People with Asperger syndrome have difficulty finding employment because they
have trouble with crucial aspects of work such as prioritising tasks and team-working,
she says. Even so, she believes her daughter could find work if given the right training. Dr Stephen Ladyman, chair of the all-party parliamentary group on autism, says:
"One of the biggest jobs we have to do is make people realise how many
autistic people there are, what the cost of it is and what services they need." He believes the government should agree to screen every child for autism at
a very young age, and repeat that screening throughout its school life. "The earlier we intervene, the better the outcome," he says. In March 2001, the government commissioned the Medical Research Council to
carry out a detailed review of the current state of knowledge about autism and
to suggest areas of possible future research. The results were due to be published
as Disability Now went to press. Not only has the review taken evidence from scientists, it has also talked
to carers and families about their experiences. After all, as the determined campaigning of Ivan and Charika Corea has shown,
it is often the families who are best equipped to point the professionals in
the right direction.
Posted: 02 Jan, 2001
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