Around in circles

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