September 22 2014 Latest news:
Thursday, February 28, 2013
Earlier this month, Ivan Corea, the founder of the UK Autism Foundation, announced that he was stepping down from the charity that he set up with his wife after six years. Lee-Ann Richards spoke to him about his battle for better services for people with autism.
Ivan Corea is living proof that anything worth having is worth fighting for.
As a parent of an autistic child, Charin, he has had to do his fair share of fighting.
He said: “A parent or carer of a child with autism has to fight all the way.”
Of the time Charin was born, he said: “There were no support services for an autistic child and, if there was, it was a postcode lottery.”
Ivan knew little about autism before Charin, now a teenager, was born.
He said: “My only encounter with the condition was reading an article about Stephen Wiltshire who is autistic but has an amazing talent that he can draw lifelike images of cities.”
Ivan was forced to learn a lot more about the condition when Charin reached 21 months of age.
“At 18 months he was babbling as normal and I was very excited about things that we were going to do as a father and son, but then at 21 months things changed.”
He added: “It was like he had enough and just went into his own world.”
It was a confusing time for Ivan and wife Charika.
“We were gutted, he was our first-born and we did not know what was happening,” he said.
The new parents had a suspicion that their son had autism and Ivan says that he had to snap himself out of his depression for Charin’s sake.
He said: “I went through a process of grieving but I knew that I had to get over it in order to help Charin because if I stayed like that it would have been much harder to help him.
“I had to get myself out of it because early diagnosis is the key.”
Charin was diagnosed with autism at the age of two but that was just the beginning.
A battle then started so that he could get the support he needed.
“No one understood the condition,” said Ivan. “He was seen as a spoilt child and as a troublemaker.”
Ivan also came up against obstacles from people who you would expect to have a better understanding of the condition.
He said: “Teachers and staff did not know what autism was.
“Our son was excluded from his Christmas play, he was left outside in the cold.
“When I saw him all alone my heart sunk.”
Ivan’s campaigning got him attention from celebrities and most importantly then Prime Minister Tony Blair.
He said: “2002 became Autism Awareness Year.
“Tony Blair became the first Prime Minister to mention autism in Parliament.”
In the same year, the first Autism Sunday service was held at St Paul’s Cathedral.
A few years later, Ivan founded the UK Autism Foundation, a charity set up to fight for the rights of poor families with autistic children.
After many years of campaigning, Ivan has decided to step down from the charity but he says the fight will go on.
“I am not going to be running the charity but I am not going to stop fighting.
“I am still going to be doing my work with Autism Sunday.”
He added: “We have probably got the biggest challenge on our hands now because Charin is going to be 18 and there is nothing out there for young people with autism.
“I want to spend more time with him and just have a normal life for a change.”