'People cry when they see what we can offer'

PAUL Shattock didn't know what to tell his mum when he was told he'd been awarded on OBE. "We'd always been socialists in our family. I didn't think she'd approve," laughs the 58-year-old, whose Essex vowels have somehow survived more than three decades in the North-East.

The head of the Autism Research Unit at Sunderland University, who recently married a paediatrician from the Philippines who has worked with people with autism for 20 years, got his gong six years ago for services to people with autism.

As the father of an autistic teenager, Paul played a leading role in Communities for Autistic People (CAP) in the late 1980s, a parent-run organisation which established a unique home for autistic young adults in Seaham, County Durham. The work of the centre was highlighted by a television documentary at the time, which also focused on Paul's son, Jamie.

Jamie was typical of youngsters with severe autism, a developmental condition which means that sufferers are often trapped in a world of their own. Affecting as many as one in 700, and four times as many boys as girls, the condition affects the ability to communicate and inter-act with other people.

It was once treated as a psychiatric disease. Now there is increasing evidence that sufferers can benefit from structured specialist education and support, though there is a distinct lack of specialist facilities in most of the UK.

Thanks to the efforts of Paul and other parents on Wearside, Sunderland now boasts a 60-place residential school for children with autism and a 24-hour residential adult service for 200 people, facilities which are the envy of the world.

"It took some doing," says Paul, remembering the early days. "At one stage I was with a group of parents who occupied the civic centre in Sunderland in protest at the lack of services. An official described me as a hyena at the time but I was quite flattered because hyenas are known for taking good care of their off-spring.".

It is not the first time that Paul has been in the limelight. His controversial view that the triple MMR (measles, mumps and rubella) vaccine may be one of a number of reasons for the recent surge in autism cases has ensured a high profile in the media.

For the last 18 years his research unit, based in an unglamorous shed-like annexe at Sunderland University's city centre campus, has been accumulating thousands of questionnaires and the results of urine samples filled in by the parents of autistic children.

As a scientist with a background in pharmacy, Paul is interested in the way that human chemistry interacts with food, medicines and the wider environment, particularly pesticides. "They say that the brain is the most sensitive organ in the body," he says. "It may be that autism is a response to something in the environment, but we just don't know."

Next month, the 10,000th urine sample will be analysed at Sunderland, providing a unique autism archive. Paul says the sample results indicate that many children with autism are failing to digest some foods properly, particularly those containing wheat and milk. But he also says he can usually spot a child where MMR is suspected of being a possible trigger of the condition. "I have got to the stage that I can look at the results and more or less tell at a glance whether MMR is involved," he says.

The work of the research unit - which consists of Paul and his secretary in a cramped office - has sometimes overshadowed the extraordinary way he has helped to galvanise services on Wearside.

While the Seaham centre was a real achievement, it was just the beginning for Paul and his supporters. Appalled at the lack of support for young people with autism, he led a sustained and successful campaign which has made autism services in the Sunderland area among the best in the world.

Apart from Thornhill Park School in Sunderland - the first in the UK to provide a year-round residential service - Wearside can now boast Thornbeck College, the only centre for advanced education for young people with autism.

CAP has now evolved into ESPA (European Services for People with Autism) and now runs two large residential establishments. Crucially, both centres work closely with the NHS, social services and the local education authority.

"If there are better services for adults with autism than ESPA, I want to see them," says Paul. "We had the first college for people with autism in the UK."

While Paul plays down his contribution to these changes, a leading North-East psychiatrist recently said: "If you have a child with autism in the UK, in terms of services the best place you can be is Sunderland."

But Paul is still not content with the changes he has helped bring about in the North-East. His horizons are much wider and he would dearly like to make a difference to autism services around the world.

Every day he gets emails and phone calls from the parents of autistic children. A significant number are from outside the UK, often from countries where there is little understanding of autism and virtually no support services.

"The good countries for autism services are the UK, Holland and Denmark, but there are still real problems elsewhere," says Paul.

While attitudes have changed to autism in Britain, many European countries still cling to the discredited idea that autism is the product of poor parenting. "Unfortunately that view is still widespread among doctors in France, Italy and Spain," he adds. Outside Europe, the situation is even grimmer.

"We got involved in an organisation called Autism In Europe (AIE), and produced a charter of rights for people with autism which was accepted by the European Union in 1992," says Paul. "Things are moving towards the British model of offering residential services but there is a long way to go."

To try to help families outside Europe, Paul and others in AIE established the World Autism Organisation. As secretary, Paul has seen the first tentative steps being taken to improve global treatment for autism.

"Autism Latin America exists, Arab Autism exists, Autism Africa just about exists... we are trying to set up sister organisations around the world," he says.

And they do need help. In South Africa last year newspapers published a shocking story about a mother who was reduced to tying her autistic son to a tree because no one could look after him while she worked, highlighting the almost complete lack of facilities in the continent.

Back at home, the Sunderland centre has produced a brief guide to autism and suggestions on how to improve the condition by eliminating milk and wheat products. The guide, which has been translated into 13 languages, is posted out to families all over the world.

"We still have a long way to go but we have a social medical system which is the envy of the world, he says. "When people come to the North-East and see what ESPA is doing, they cry their eyes out."