The Story of Charin
An address given by parent and carer Ivan Corea
who, together with his wife Charika launched Autism
Awareness Year. The address was to delegates at the AUTISM 2002 Strategy
Conference at the Kings Fund on Thursday 14th February 2002
May I introduce you to someone who
is very special to us, Master Charin Yasindu Corea who inspired us to launch Autism Awareness Year. Charin was born on the
3rd of February in 1996 surrounded by history in the East End of London; he also entered a world of turmoil.
When this little bundle of joy was
placed in my arms ((his mother was still unconscious after the caesarean operation) I could only offer a prayer of thanks
to God for this wonderful gift of life. Charin suffered foetal distress at birth, it was a traumatic experience, by the grace
of God the hospital managed to get a team together to perform the caesearean operation.
Charin owes a great deal to his mother
even to this day. I think mothers with autistic children ought to be given medals of courage. I stand here to pay tribute
to my wife Charika who has taken on so much sleep deprivation is no joke, having to suffer the sight of people verbally abusing
your first born and all because he is autistic is no fun. From the time Charin was born, sleep is a luxury. My wife went through
agony and a 36 hour labour it was and still is a very exhausting journey.
Charin seemed to develop normally
he smiled at three weeks, he babbled at 9 months, he walked at one year. He loved looking at books, he enjoyed listening to
music, and he started doing complex puzzles at a very early age.
Charin as nearly all Sri Lankan boys do took
up a bat at an early age and seemed to enjoy watching cricket in the land of the World Champions when we took him on holiday.
I do apologise, but life wouldnt be complete to a Sri Lankan without a reference to cricket. Nowadays Charin has found other
uses for the cricket bat and we spend our time ducking when Charin is about!
Charin smiled wherever he went and he appeared to be as normal as any other child in the UK or in Sri Lanka.
Suddenly it all went horribly wrong.
At twenty one months he appeared to stop babbling. It was extraordinary. A few months before it was as if he was on the verge
of talking here we were with a baby who went into his shell and slammed the door on the outside world. I must add that the
MMR vaccination was given when he was around eleven months.
We took Charin to the Rectory Lane
Health Centre in Loughton, where, a paediatrician Dr. Rudran diagnosed Charin as having pervasive developmental disorder which
refers to a whole group of disorders characterised by delays in the development of multiple basic functions including socialisation
The renowned Consultant Paediatrician, Dr.
Gillian Baird of Guys Hospital in London and paediatrician Dr.M.Ali in Loughton later confirmed this diagnosis.
Symptoms of PDD include severe communication
problems such as understanding language; difficulty to relating to people, objects and events; unusual play with toys and
other objects; difficulty with changes in routine or familiar surroundings, and repetitive body movements or behaviour patterns.
Autism, the experts suggest, a developmental
brain disorder characterised by impaired social interaction and communication skills, and limited activities and interests,
is the most characteristic and best studied PDD. Other types of PDD are Aspergers syndrome, Retts syndrome, childhood disintegrative
disorder and others.
Autism is a neurodevelopmental disorder
all of us have neurons in our brains to process thought, they need to fire in the correct order in the brains of autistic
children these neurons dont fire at all or they just misfire.
That is why you cannot give an autistic
child complex commands everything has to be kept well and truly simple.
The fact that Charin could be autistic
devastated us it was like a thunder bolt that hit our family life, our marriage, our whole world. t was also the beginning of a protracted battle with first
Essex County Council and now Redbridge Council to get a proper structured educational program and funding for specialist speech
therapy for Charin.
Initially we refused to accept the
diagnosis there were no cases of autism in our families a hundred and one questions went through our minds was it the MMR
vaccination, was it the foetal distress? We were in turmoil and when we asked the local authorities if there were any support
groups in our area they didnt have a clue.
The strain was enormous, almost to breaking
point. So were the financial implications. My wife who was a headteacher in a Montessori
School in Wapping had a leave work, as our son needed full time care. Few understood
the situation. We had to survive on one salary.
We found the Internet to be a real boon we
surfed the web and found a great deal of information on Autism. Parents from all over the UK and from the United States e-mailed
us with information and support. People telephoned us from all over the country.
We were soon sharing information and research.
Even the Autism Research Institute in San
Diego got in touch with us. The Internet
was a heaven sent gift we were able to read up and digest information on Autism and its causes. The National Autistic Society
in London also sent us literature.
Although we were physically, morally
and spiritually exhausted we refused to give up and give in we received tremendous support from our church, it certainly stopped
us from going over the cliff.
Many a time we faced depression but
we were determined to do something for our child My wife Charikas indomitable spirit was a great strength to me it was difficult
for her she was with Charin 24 hours a day. At least I was meeting people at work.
We soon found there was no cohesive
national policy on autism from both an education and health point of view. There was a postcode lottery to health, education
and specialist speech therapy. Some LEAs and NHS Trusts were absolutely brilliant while others kept the money in the bank
and would not shell out a penny for autistic children.
Cost cutting was the name of the game. There
were many places and therapies some parents sent their children to the Boston
Higashi School to follow the Daily Life Therapy Program, there was the Sonrise program,
Lovaas, TEACCH, ABA, and PECS.
It took three months for Charin to
be found a placement by Essex due to red tape; the speech therapist came home and gave us no support - all she seemed to do
was assessment after assessment with no real advice or any plan of action a speech therapy program for Charin was non-existent;
the school had to go through changes themselves and learn about different strategies to educate an autistic child.
We were convinced that it is through
early intervention that Charin could be helped it is through education, education and education that we could reach out to
We found that we were not alone in doing
battle with the local LEA. Many parents across the UK were in the same
position as we were there were thousands of Charins who are suffering as a result of the postcode lottery cost seemed to be
the overriding factor. The childs needs were secondary.
It was exasperating and frustrating
you pay your taxes, you do work for the community and you expect some support from the NHS and the educational authorities
when something happens to your own children. You do not expect to be stonewalled by a world of cost cutting, reluctance and
However as parents who come from a minority
ethnic community we were determined to overcome the barriers placed before us. We are not going to give up on our child. At
the same time we realise there are many more parents even parents from ethnic communities across the UK who are confused, they do not know where to turn to or where to seek support.
We were also convinced that as far as Charin
is concerned it is through inclusion in a mainstream school with the support of a specialised teacher trained in dealing with
autistic children that our son could be helped. He also needs a specialised program to help him communicate. Charin is now
doing well at Buckhurst Hill Country Primary School thanks to all those who work with him. It was a steep learning curve
but together we are all coming to a better understanding of his needs.
Through our research we found out more about
the PECS communication system.Former psychologist, Sue Baker, a consultant in
the Picture Exchange Communication System (PECS) came home and conducted a training seminar for the team working with Charin
including his teachers. And yes, we had to pay for this training.
PECs is a system developed by Lori Frost and Dr. Andrew Bondy from
Delaware in the US. PECS aims to provide children with an effective and functional method of communication.
PECS uses picture symbols and children learn to construct sentences and more
complex communications enabling them to be more effective communicators.
Through this specialised program children
are taught to initiate communication within a social context they learn to exchange -
Charin has excelled as a result, he now uses a lot more vocabulary, phrases, even sentences.
Charin has been greatly helped by music therapy
session at the world famous Nordoff-Robbins Centre for Music Therapy in Kentish
Town. The highly respected Jacqueline Robarts, a research fellow with City University took Charin on together with Donald and now Helen, - we see a real change in Charin after these sessions also aimed at encouraging communication through music.
Sting and a whole host of musicians
support the Nordoff-Robbins Centre they lead the field in research on the subject.
Music is therapy and has always been
so, said Sir Yehudi Menuhin, we can see the link between healing and music Charin is being helped through the power of music
he hated it at the start but now we see real progress.
Another institution that has helped Charin
so much is the Osteopathic Centre for Children in Harley Street. The OCC
was backed and supported by the late Diana, Princess of Wales.
When Charin first went to the OCC
he squirmed, he wriggled, he screamed he detested the cranial osteopathy but now when
he even allows the osteopaths to carry out the regular treatment to his stomach and diaphragm to calm him down and
to tackle the trauma he faced at birth.
The transformation in Charin after
these sessions is amazing. He is more relaxed at home and it helps us to communicate with him and he with us.
There have been recent moves to help
families with such children the NAS have launched the Early Bird Program to support
parents. Cherie Blair, wife of the Prime Minister launched an advocacy scheme with the NAS to help parents of autistic children
on the legal side.
When Charin was in his nursery he benefited
greatly from Nicola Gardners program for autistic children in Essex. Charin started learning compliance
as a result of that program. Sadly that too was abandoned due to cost.
Charin has had to face so much during the
first six years of his life. He had to undergo two operations in his first year. There is still a lack of knowledge where
autism is concerned. As the poster says. The problem is understanding. Understanding at so many levels from the man or woman
on the street to people in the corridors of power in Downing
Street and the Palace of Westminster.
We realized at the time that both
health professionals and teachers didnt have a clue about autism. In fact I think parents know more about the condition than
the professionals and I want to pay tribute to the number of parents groups across our country.
It was frustrating. Where do you go
for help. The buck didnt stop anywhere and the authorities didnt want to know about autistic children. They were regarded
almost as a hinderence.
Charin has taken everything in his
stride he cut a lonely figure at his christmas party, seated at a table by himself while his classmates enjoyed the celebrations.
He was sent out to the garden alone - and the door closed on him while the play went on inside. At a fast food restaurant
in Leytonstone an ignorant employee refused him into the play area on the grounds of his autism and that he would be a danger
to other children. This was despite the fact that he was accompanied by two teachers and his mother.
When I telephoned the manager he could
not care less. Later on I found out that the company did not have a cohesive
disability policy, the employees did not know about the Disability Discrimination Act nor were they trained about dealing
with autistic children. Now they have issued guidelines about serving children with disabilities. I am grateful for Dr. Rudi
Viz, Harry Cohen and Linda Perham who took the matter up with the fast food chain.
If you go on any jouney you have to
plan to the last dot. When we went on holiday we planned everything, but we didnt expect the rude behaviour of the Immigration
Officer at Heathrow who was serving passengers in the Disability Queue. He bawled out at my son to keep still and I had to
remind him that we were in the disability queue for a reason. He did apologise, stating I am sorry I did not know, I could
not tell. And that is exactly it. These children have to suffer abuse because people just dont kmow about autism. They are
viewed as spoiled children. Outwardly they may look normal hence the misunderstandings.
Just a few weeks ago a mini cab driver,
refused to take him to his music therapy session as a result of his activity in the car. He was left on the pavement, crying.
These things should not be happening in a civil society but they do. It causes so much heartache.
That is why we came up with the idea of Autism
Awareness Year a few years ago, Charika and I hatched this small acorn of an idea in our front lounge in Buckhurst Hill well
it has grown into a great big tree right in front our eyes. 500 organisations have come in as partners large charities to
small parent groups. I want to thank Julie Spencer Cingoz, Chief Executive of BIBIC together with her right hand Pam Brooks,
Colin Headley, Steve Clothier, James Rye of the Disabilities Trust for buying into the vision. So many organisations are working
together in partnership on such a large scale for the first time, I am glad to see the valuable in-put from the National Autistic
Society, Autism London, PACE, PACT, RAFT, organisations in Scotland, Ireland (North and South) and Wales. I was told that even on the Isle of
Man, announcements were made about Autism Awareness
I must also add that it is not all
doom and gloom Charin is a real character, at church he will walk up in the middle of the service and start singing or talking
in his own language. Once while I was in the bath our son had drawn this magnificent mural on the wall in our lounge, it was
like looking at some abstract art by Andy Warhol!
We wrote, we lobbied, we challenged,
we questioned, we laughed, we cried, we rejoiced. At the start people didnt event want to know. But we persevered. It will
take more than a PR campaign to put us off when you see your son clutching his stomach and crying for 45 minutes at one oclock
in the morning these children suffer from bowel problems public relations is the last thing that comes to your mind. You want
answers- why is your child autistic, what are the causes of autism, where is the support for your child. We have had to fight
so hard, do battle with our local council, the LEA, the NHS Trust. Does this seem right?
Many people have come on board. Nick
Hornby, Romesh Gunesekera, the Bishop of London, Sir Richard Branson, Chris Tarrant, Christopher Timothy are among those who
have wished the year well.
153 members of parliament signed EDM
103 before the general election backing the campaign. The Scottish Parliament debated AAY on the 6th of December
and Linda Perham MP launched the year with a maginificent debate on autism in the House of Commons on 9th January.
Linda has fought hard on behalf of Charin.
People of all faiths have been praying
for autism. Last Sunday (10th of February)we witnessed a wonderful happening a service for autism at St.Pauls Cathedral
600 people who came from all over the UK - joined us, many autistic children and adults were present to hear Canon Halliburton
deliver a message about autism and disabilities and prayers were said by Rev. Lucy Winkett. I would like to express my thanks
to Major General Milne and the clergy who are well and truly partners of Autism Awareness Year. There was a touching moment
at the end of the service at St.Pauls as the choristers were leaving, two autistic children from behind shouted thank you.
Members of the All Party Parliamentary Group on Autism in the House of Commons have been so supportive. Peers in the Hose of
Lords have also raised issues about autism in that chamber.
The Prime Minister Tony Blair and
Cherie Blair have extended their personal support, so has Iain Duncan Smith and politicians of all parties. For this I am
grateful. The Prime Minister has assured me that he will be listening carefully to what comes out of this conference. Well
Prime Minister I have a long list of issues they all need to be addressed I will close by highlighting some of the key issues.
Thank you for listening.
and Charika Corea
14th February 2002
the AUTISM 2002 Strategy Conference at the Kings Fund in London