Living with autism

Ian Wager was thumped in a cafe once when he helped himself to another customer's chips.

He burst into tears and was inconsolable because he had no idea what he'd done wrong.

His mother Sue, who lives in Chinnor, burst into tears as well, so was unable to explain to the man that her ten-year-old son was autistic and helped himself to food he liked.

She said: "I cried a lot in the beginning. I still do from time to time. But Ian's autism has become a way of life now."

Her life has been immeasurably changed by her second son's autism, as have that of her husband and other two children.

Ian sleeps very little, cannot go to the loo on his own, cut up his own food, dress himself or any of the other habits boys of his age take for granted.

His behaviour is often obsessional and he will never be self-sufficient. He speaks incoherently or recites chunks from childhood books or videos. He must have order. If he is driven a different route to school or given the wrong food for supper he screams loudly. At one stage, whenever Sue took him shopping and put something in the trolley, he put it back and screamed loudly when she insisted on keeping it. He is extremely sensitive to sound, touch and taste. For example, he cannot differentiate between the sounds in a room.

He looks at the calendar several times a day to see what the agenda is - and woe betide them if he's asked to do something that's not on there.

On Sunday, Sue took him to a Thomas the Tank engine exhibition. He was so excited that he pushed himself to the front of the crowds, put his hands on this ears and started screaming.

She said: "Everyone was staring at him and he didn't have his normal T-shirt on which says 'Be Patient, I'm autistic' because he wanted to wear his Thomas the Tank Engine one that day."

While he goes to a special school it's only to teach him coping mechanisms. He will never get better or live independently. All this is borne by his mother on a daily basis. But, on top of that, she has to deal with the ignorance of the general public.

She is resigned to the constant stares and whispers now but says her other children still get desperately embarrassed.

"I'm hardened to it now," she said.

The primary school teacher noticed her son was different from other three-year-olds in 1992 but it wasn't until a trip to a London hospital that his condition was confirmed.

Sue remembered: "It was almost a relief to put a name to it. We had never heard of autism and hoped it was something he would grow out of."

Her parents in Ireland bought a book about autism. They were so disturbed by what they read that they actually flew over with it to show Clive and Sue the reality of the condition.

She said: "That's when we realised life would never be the same. I don't think my husband will ever fully come to terms with it. "I try not to think about what life would have been like if he didn't have it. But I still think it's so unfair. Why Ian?"

The family, then living in Devon, moved to Chinnor because the county is so geared up for autism.

The condition is accepted in their village, where the country resource unit is, so they come across less prejudice. But dealing with it on a daily basis is still taxing.

Sue said: "The other children get less of my time. I never finish anything with them because Ian will start screaming or need something.

"But we are lucky because we do get respite care, so we go away on holiday together without him.

"We miss him, but it's heaven. We are all so relaxed and we get on." Ian is now ten and Sue says now that he's older, people realise there's something wrong with him.

But when he was five or six they thought he was a spoilt child having a tantrum who couldn't be controlled by his parents. As to the future, Sue knows Ian will never be able to live on his own and that she will not be there for ever.

And with proposed cuts to services Ian has an uncertain future.

For Helen and David Mason, it's their son Matthew's seemingly normal appearance that disturbs them.

Helen said she often wished he was in a wheelchair or had Downs Syndrome instead, because then people would instantly recognise his disability.

"Matthew looks like a normal 11-year-old boy so people assume he has a behaviour problem rather than autism," she said. "That's the most difficult thing."

The 36-year-old has also had to deal with the public's prejudices.

Once in a bookshop the cashier handed Matthew his book and asked him to say 'thank you'. He didn't understand and tried to take the book. When she resisted, he cried.

"Just give him the book," his mother begged the woman. "Don't you teach your child any manners?" was the retort. Helen makes it her policy to explain to anyone in contact with Matthew that he is autistic, but is still hurt and angered by people's attitudes.

"Instead of being so judgemental and staring and muttering, they should consider that he might be autistic," she said. Before his condition was diagnosed at the age of 18 months, the Headington mum thought he just had a bad case of the famous 'terrible twos'.

She explained: "He was completely normal when he was born. I call it the invisible disability.

"Sometimes I would do anything just for one normal day. But I always remind myself that Matthew did not ask to be born like this."

Matthew is one autistic child who will soon be integrated into the education system after his dramatic improvement in the Chinnor Unit attached to Marston Middle School.

He is very bright, as are many autistic children, and great at maths, writing and computing.

His parents just hope that one day he will be able to live an independent life.

"He is making a lot of progress and is so much better than he used to be. All I want for him is a job, friends and self-sufficiency," Helen added. AUTISM AWARENESS WEEK

Famous author Nick Hornby's recent revelations about his autistic son have once more shed light on the disorder.

Bruce Willis' recent film Mercury Rising also featured an autistic boy. Indeed, not since the film Rain Man, which starred Dustin Hoffman and Tom Cruise, has so much attention been paid to the disability, which afflicts an estimated one in 500 children.

Autism Awareness Week aims to dispel the myths and highlight the difficulties experienced by the many families whose lives have been permanently changed by the mental disorder.

THE COUNTY IS LEADING THE WAY

Oxfordshire is ahead of the rest of the country facilities-wise with six resource units attached to schools for 76 autistic children, there is still a long way to go. Sheila Coates, head of the county's autism service, says she hopes it makes people stop and think before judging an autistic child. Some of the signs which mean a child is autistic:

*Difficulty developing secure relationships and relating to others

*They live in a world of their own and are often described as aloof and withdrawn

*Their play and imaginative skills are lacking

*They take refuge in obsessions, rituals, narrow interests or repetitive movements

THOUSANDS OF PEOPLE AFFECTED

*There are 270 autistic children aged three to 19 in the county

*Autism affects about 80,000 people in Britain today *It affects about four times as many boys as girls and varies greatly in severity

*It is often hereditary and after having one autistic child your next one has a 1:50 chance of being autistic as well

*Only 11-25 per cent become self-supporting, the remainder needing some form of lifetime support

*The cause is still unknown

*Autistic children are more likely to have epilepsy and allergies, especially to food

*Early diagnosis is vital

For further information telephone the Chinnor Resource Unit on 01844 353123

Story date: Saturday 08 May

Converted for the new archive on 30 June 2000. Some images and formatting may have been lost in the conversion.