WHEN he was 18 months old Lewis Mahony showed some signs of slow development and poor eye contact, but was still behaving relatively normally and enjoyed playing with his toys and had started learning some words.

However, that changed dramatically in the space of a few weeks when he started to regress, lost much of his vocabulary and stopped returning his mother Christine's smile.

It was devastating.

"Even as a very small baby he didn't make eye contact and he didn't seem to notice when we had visitors to the house. There were things like that and the fact he didn't wave or point which were concerning, but the health visitor told us not to worry," she said. Two years of concern over Lewis's problematic progress, particularly compared to the normal development of his older brother Ewan, culminated in a diagnosis of severe autism when he was two years old.

"I knew there was something seriously wrong just by watching him. Lewis would play with trains and then I realised he wasn't playing with them, he was just lining them up," said Christine.

Although Lewis does not smile at his mother, he is an affectionate boy and enjoys hugging her and other members of his family he knows are close and important to him. However, he has very little understanding of the world around him and the simplest of skills such as walking, sitting, riding a bicycle, using a slide or going on public transport has to be meticulously taught, over and over again.

"It took us weeks to teach him to put the helmet on to go cycling. The first time we tried to get him to walk less than half a mile he sat down screaming more than 25 times," recalls Christine, who lives in Linlithgow with her family.

What was even more difficult to cope with was when Lewis started self-injury. "When he got frustrated he would bang his head on the floor over and over again or bite his hands. He had awful tantrums and screamed for hours. It puts a huge stress on you and we couldn't go on holiday, go shopping or go to other people's houses because he was totally out of control."

Christine tried different strategies recommended by health workers, but nothing seemed to make a difference until she began using a technique called Applied Behaviour Analysis (ABA), that involves a constant system of rewards. At last his behaviour could be controlled and she began to make progress teaching him, partly at home, and getting funding from her local authority to have support staff in a mainstream primary school.

However, now 10 years old, he will soon be ready to move to secondary school and there is no more funding. Christine does not feel able to continue to bear the burden of teaching him at home, but because there are no schools that use the ABA methods in Scotland, she has decided to try and set up a new independent special school with the help of other parents. Parents in England, Wales, Northern Ireland and the Republic of Ireland have already got together to set up their own independent ABA schools. It will not be an easy task with minimum start-up funding of £500,000 required, but the success of parents elsewhere in the UK has given her hope.

A number of special schools for children with autism in Scotland in the private and state sector already exist, but parents argue they do not suit every child. There is also concern the Scottish Government's policy of mainstreaming, where children with learning difficulties go to a comprehensive school, can end up harming children if they are not sufficiently supported. The concerns of parents have been borne out by official studies. A report in October last year by HM Inspectorate of Education found educational programmes for children with autism were "frequently deficient in either the attention given to addressing the underlying needs or, conversely, in addressing achievement across the curriculum".

It went on: "In many cases, the progress of pupils was not tracked systematically, with the result that schools and authorities did not have sufficiently detailed information about the achievement of pupils with autism. In addition, parents were not always kept fully informed about the range of provision available for their children."

Shona Pinkerton, principal of Daldorch House School and Continuing Education Centre in Katrine, East Ayrshire, run by the National Autistic Society, believes there is a need for as much variety as possible. She said: "Many local authorities have a plan to improve autism services and it is clear work is being done, but we need more specialist places available in schools, more specialist units and better training across the board to ensure all school staff are aware of these issues and know how to react to them." Anne Pirrie, reader in education at Paisley University and author of a recent report on mainstreaming, agrees, but warns of the cost implications. She said: "It is clear we need more and better services for those with autism, but the sort of one-on-one attention required for some of the children with the most severe cases is hugely expensive." The meeting to discuss setting up an ABA school is to be held at 7.30pm on Sunday, September 23 at the Burgh Halls in Linlithgow. All interested parties are welcome to attend. Christine can be contacted by e-mail on christine.mahony@talktalk.net.

Links: www.nas.org.uk www.autism-in-scotland.org.uk

Struggle to make sense Autism is a lifelong developmental disability that inhibits the way those affected communicate and relate to people around them. People with autism have difficulties with everyday social interaction. Their ability to develop friendships is generally limited, as is their capacity to understand other people's emotional expressions. People with autism often have learning disabilities. Everyone with the condition has difficulty making sense of the world. Asperger syndrome, is a form of autism, at the higher functioning end of the autistic spectrum. Reality to autistic people is a confusing mass of events, people, places, sounds and sights without clear boundaries, order or meaning. Much of their life is spent trying to work out life's patterns. People with autism generally have difficulty with social interaction and communication and can exhibit repetitive behaviour patterns and resistance to changes in routine. The cause of autism is not known, but genetic factors are important. It may be associated with conditions affecting brain development before, during, or very soon after birth. Specialist education and structured support can really make a difference to the lives of people with autism, helping them to maximise skills.