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As more children are being diagnosed with autism, parents are finding that there are either too few trained staff at mainstream schools or a lack of specialist schools in their area. Kendra Inman reports.

The move from primary to secondary school can be very stressful but for the parents of children with autism the move is an especially worrying time. For Janice Ballard, the relief at finding a school that will meet her son’s needs and help him to thrive is tempered by the fact that the family lives in London and the school is in Yorkshire.

Jamie is severely autistic and educational provision for someone with Jamie’s needs is patchy. It means that a regular 200-mile trip to spend weekends with her son is a price Janice is willing to pay to secure his future.

The number of children diagnosed with autistic spectrum disorders has been rising but there are fears that educational provision and support is failing to keep pace with demand. Councils are struggling to provide specialist help for children. In addition, there are fears that government policies on inclusion - the move to ensure disabled children are taught in mainstream, not special schools - is making the situation worse as under-resourced schools struggle to provide for children with a wide range of specialist needs.

Autistic Spectrum Disorder (ASD) is a developmental difficulty that affects the way a person communicates with and relates to those around them. Those with autism find it difficult to relate to others in a meaningful way and find life confusing. Although the symptoms vary, common traits include repetitive behaviour and a resistance to changes in routine.

In recent years, there has been a marked increase in the number of children diagnosed with autism. A Medical Research Council review in 2001 estimated that autistic spectrum disorders now affect one in 166 children under eight. Last year, a National Autistic Society (NAS) survey Autism in Schools, Crisis or Challenge,¹ found the rate to be higher. Two-thirds of teachers thought there were more children with ASD than five years ago. Schools said one in every 152 children they teach had a formal diagnosis. The rate of ASD reported by teachers was more than three times higher in primary school than secondary school.

The findings could be interpreted as proof of a steady increase in the numbers of children with ASD or proof that better diagnosis in primary school means younger children are being picked up while older children have been missed. Whatever lies behind the findings, the fact remains that secondary schools will have to provide for increased numbers of autistic children in the future, says the survey.

In the same survey, teachers voiced concern about the level of support available. Nearly half (44 per cent) of schools that had children with ASD said significant numbers were not receiving the specialist support they need. And nearly three-quarters (72 per cent) of all schools were dissatisfied with the level of training teachers received in autism.

There is also evidence that parents are unhappy with the education on offer and are having to fight to secure specialist help. The Special Educational Needs and Disability Tribunal gives parents the chance to appeal against local authority decisions about provision. Last year, they noted an increase in the number of cases concerning autism. During the year 2001-2 there were 490 cases, an increase of 22 per cent over the previous year.

There is anecdotal evidence too that frustrated parents are increasingly setting up their own provision for children or turning to private providers to fill the gaps.

For Petula Storey, who works on the NAS tribunal helpline, the phone hasn’t stopped ringing. About 60 per cent of her calls are about councils’ refusal to assess children - the first step towards obtaining a statement, which outlines the education and support that must be provided. She has also noticed an increase in the numbers of parents that struggle to secure speech and language therapy for their children - even if the LEA is willing to pay there is a national shortage of therapists.

The government wants more disabled children to be educated in mainstream schools rather than special schools. While there is widespread support for inclusion there is concern that it is seen as a cheaper option to special schools. Some local authorities have been very successful at inclusion but for every success story there are examples of poorly supported children taught by inadequately trained staff.

The local education authority had very little to offer Janice Ballard’s son Jamie. After his problems were identified at the age of two he was offered a place at a special needs nursery in the local borough for two days a week and in a mainstream nursery for the remaining three days.

"The mainstream nursery looked fantastic on paper - there were 10 children in a class. But he didn’t get the help he needed. His key worker was on sick leave and for the three days he was there he regressed", says Ballard.

"They couldn’t cope with him nor he with them but I was desperate for a bit of respite. It was a shame it didn’t work out because it was the only chance he had of inclusion," she says.

The NAS survey revealed that in schools with children with ASDs, only 22 per cent of teachers had received some autism-specific training and the majority only between one and four hours. One in five schools with children with autism or Asperger’s syndrome have no teachers with autism-specific training at all.

Children with ASD or Asperger’s have certain behaviours in common. But beyond that, each child may deal with situations differently. Some children will throw tantrums when anxious or subjected to changes of routine, while others will turn in on themselves and become unresponsive. Others will become violent when put under pressure.

Because their difficulties can vary widely, understanding of the condition and training is crucial, says Catherine Heather, NAS policy and campaigns officer for children. "Children with the most severe problems may be offered a place in a school for children with learning difficulties, which doesn’t tackle the difficulties that autism brings," she says.

Also children at the "higher functioning" end of the spectrum may not be identified and their behaviour may be misunderstood.

"Many of these children get excluded from mainstream school either formally or by getting sent home a lot - either way they’re missing out," says Heather.

Jamie has been attending Radlett Lodge in Hertfordshire, a residential primary school 11 miles away from his home. His mother says the school has been wonderful but holiday times are still difficult. Changes to his routine can make Jamie frustrated and violent. He sleeps well at school but may only sleep for three hours while at home. Jamie needs the structure of a specialist holiday play scheme but his family have only been offered a place for one week during the summer.

NAS argues that it is time for LEAs to provide the education and support children with ASD need. The government agrees. Last July, it published Good Practice Guidance on Autism Spectrum Disorder,² which provides a framework for LEAs and schools to teach children with ASD.

But the response of schools and LEAs to children with ASD still varies. NAS wants minimum standards for the education of children with ASD and systems for monitoring education authorities and schools’ support. NAS says resources must be found to meet the needs of the growing number of children with ASD if the government’s inclusion policy is to work.

¹ National Autistic Society, Autism in Schools, Crisis or Challenge, 2002

² Autism Working Group, Good Practice Guidance on Autism Spectrum Disorder, Department for Education and Skills, 2002