Coping with a thunderbolt

by
03 February 2010

Autism Sunday is on 14 February. Ivan Corea describes his experience as the father of an autistic child

OUR JOURNEY into the world of autism began when our son, Charin, was born on 3 February 1996.

Charin suffered foetal distress at birth, and my wife, Charika, was rushed in for an emergency caes­ar-ean. I will never forget the mo­ment he was placed in my arms. I could only offer a prayer of thanks to God for this wonderful gift of life.

Despite his traumatic birth, Charin seemed to develop normally. He smiled at three weeks; he bab­bled at nine 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.

Then, suddenly, it all went wrong. At 21 months, he stopped babbling. A few months before, it had seemed as if he was on the verge of talking; now, we had a baby who seemed to have retreated into his shell and slammed the door on the outside world. (I must add that he had the MMR vaccination when he was about 11 months.)

Charin was diagnosed as having Pervasive Developmental Disorder (PDD). This was confirmed by the consultant paediatrician and autism expert Dr Gillian Baird, from Guy’s Hospital.

Symptoms of PDD include severe communication problems such as understanding language; difficulty in 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 is the most characteristic and best-studied PDD. But other types include Asperger syndrome, Rett syndrome, Childhood Dis­inte-grative Disorder, and others.

All of us have neurons in our brains, which need to fire in the correct order to process thought properly. In the brains of children with autism, the neurons either do not fire at all, or they misfire. That is why you cannot give complex commands to a child with autism; everything has to be kept simple. And some children with autism think in pictures and numbers.

Advertisement

  The fact that Charin had autism devastated us: it was as if a thunder­bolt had suddenly hit our family life, our marriage — our whole world. It was also the beginning of

a protracted battle with the local council to access public services in education, health, specialist speech therapy, and respite care.

A big help was finding out about the Picture Exchange Communica­tion System (PECS) developed by Lori Fost and Dr Andrew Bondy in Delaware, in the United States. It proved to be an effective and func­tional method of communication, using picture symbols.

But the strain of all the battles just to “do” daily life with a child with autism was enormous. Sowere the financial implications.But we refused to give up or givein, and our church was very suppor­tive.

Charin was welcomed by the church community. There is a special needs ministry at our church, All Saints’, Woodford Wells, and during the service he is in a quiet sensory area. The church has also reserved a seating area for children with special educational needs, so that when they come into the main church they know they have a regu­lar place to sit.

There are other ways churches can help families who have children with autism, and help these children connect to the church community. Using the PECS system in church services and Sunday schools, for example, creates a welcoming at­mosphere for those often isolated by autism.

Creating visual timetables for each child with autism in Sunday school can be helpful. Extra visual cues, such as pictures, are also good to use during a story at any age level. Introduce sensory toys.

Giving consideration to the volume of music is helpful — some people with autism or Asperger syndrome are ultra-sensitive to noise. A quiet “time out” area, with dividers, cushions, and lights, is good for children with autism to relax in, particularly when they have experi­enced sensory overload.

It can also be helpful to set up a “buddy” system, so that there is one-to-one help for a child or young person with autism or Asperger syndrome. Sometimes, however, a child may need two helpers.

Children and adults with autism or Asperger syndrome, and their families, can be lonely. Churches that can set up a befriending service to support carers would be provid­ing a great service.

More could be done to help children with autism to grow spiritually. Christian publishers could publish books using the PECS system, with stories from the Bible and stories about Jesus.

Advertisement

The Church of England has already issued guidelines on autism. Marriages come under huge strain, and the Church could offer special­ised counselling; befriending ser­vices; a place where people could come to when things get too much to cope with because life is hard.

IT WAS Charin’s 14th birthday on Wednesday. His progress has been remarkable (we believe that this is due to God’s grace).

We couldn’t afford expensive therapies costing thousands of pounds; so the local council adapted an Early Bird Program — a parent-focused programme designed to help parents understand and work with their children with autism. Early intervention is key.

And tears came to my eyes when Charin ended the Autism Sunday service of 2009 with a prayer. This is the boy who, they said, would not speak. There is always hope. He is a whizz on computers and com­puter games, and everything is self- taught; Charin has never read a manual.

Charin has been such a blessing. He has shown us that children with autism have so much potential. And already we are seeing leading cam­paigners who have autism and Asperger syndrome championing the rights of the community. They are a powerful voice for the voice­less. But the Government needs to do more, from securing employ­ment and training employers to supporting the elderly. Who will look after people with autism when they are old?

MOTHERS of children with autism should be given a medal for cour­age. Charin owes a great deal to his mother, even to this day: Charika regularly struggles with sleep depri­va­tion. And having to listen to people verbally abusing your child because he is autistic is very upset­ting.

We could have struggled on alone. But our experience of raising Charin has inspired us to campaign for others in similar circumstances. We launched the Autism Awareness Campaign UK in 2000, to lobby and campaign on important issues such as health, education, specialist speech therapy and respite care, blue badges, benefits, and motability.

Supported by 800 British organi-sa­tions, we initiated 2002 as Autism Awareness Year in the UK, and, in the same year, founded Autism Sunday — the international day of prayer for autism and Asperger syndrome.

In 2008, the UK Autism Founda­tion (UKAF) was launched, with a view to building an autism centre and a school, and creating initiatives to help families with an autistic child who are struggling financially. (As a result of a UKAF campaign, the Chancellor, Alistair Darling, has promised to increase the Disability Living Allowance, the Carer’s Allow­ance, and child benefit for disabled families in the April budget for 2010-11.)

Advertisement

Dealing with autism is a 24-hour job, but we thank God again and again for Charin. We love him with all our hearts. He has brought so much into our lives — laughter, tears, and joy — and we have learnt so much from him.

Many of Jesus’s miracles helped the disabled, and if there had been any children with autism and Asperger syndrome around, I am convinced he would have hugged them. I urge cathed­rals, churches, and religious organi­sations to con­nect with the autism com­munity, too. As Jesus said, “What you do to the least of these, you do unto me.”

The international day of prayer for those with autism and Asperger’s syndrome is on Sunday 14 February, The London service for Autism Sunday will be held at All Saints’, Woodford Wells, London IG8 0NHon 14 February at 11.15 a.m.

www.autismsunday.blog.co.uk

www.justgiving.com/ukautismfound

Welcome to the Church Times

​To explore the Church Times website fully, please sign in or subscribe.

Non-subscribers can read twelve articles for free each month. (You will need to register.)