Abandoned into an alien world

19th July 1996 at 01:00
Legislation on special needs is discriminating against children with autism. Josephine Gardiner reports.

Widespread ignorance about the nature of autism and a reluctance to provide education tailored to this complex condition is exacerbating the already formidable problems faced by autistic children and their parents, according to a highly critical report by the National Autistic Society published on Tuesday.

The report questions the current orthodoxy on the inclusion of children with special needs in mainstream schools, and suggests that a dogmatic adherence to this policy on the part of local authorities, combined with the pressure to find cheap solutions to special needs, is particularly harmful in the case of autism. Recent legislation that was intended to put the child first is actually discriminating against children with autism, it suggests.

The report claims that myths about autism persist among people who should know better, which prevents children getting crucial early educational intervention - autism is an incurable condition, but a huge difference can be made if it is recognised and treated early.

Autism is now believed to derive from an organic disorder in the brain, rather than psychological problems. Typically, it causes severe damage to a child's capacity for abstract thought and an absence of basic curiosity about the world. Autistic children also seem to lack both the ability and the desire to communicate with others, including their parents. In addition, autism involves an inability to grasp the meaning and purpose of language, and a retreat into obsessional and ritualistic behaviour.

The degree of severity can vary from normal or even high IQ to severe learning difficulty. Where there is no impairment of IQ, autism is known as Asperger's Syndrome.

The Autistic Society's report is based on a questionnaire survey of local authority education and social services departments on the type and amount of provision for young people with autism, and a survey of parents' experiences of the services available.

It reveals that 55 per cent of parents had difficulty in obtaining a diagnosis, citing delays, large numbers of consultations and an unwillingness on the part of professionals to commit themselves. Twenty-nine per cent of children had not been diagnosed by their fifth birthday. Parents also said that they felt blamed by professionals for their child's condition - suggesting that many educational psychologists, doctors and social workers still believe that autism is a neurotic disorder.

The report criticises recent legislation on special needs: the 1989 Children Act places a duty on local authorities to keep registers of disabled children but does not differentiate between disabilities; similarly, the Code of Practice on identification and assessment does not identify autism as a specific condition. The result is that local authorities have no idea how many autistic children there are in the area, and are falling back on the catch-all label "severe learning difficulties" for providing services, so that autistic children are liable to be placed in schools among children with a wide range of mental handicaps.

After getting a diagnosis, parents complain that they are left to cope alone; they have find out for themselves what educational provision, if any, is available, get their child a statement and fight for the appropriate school. Most worried constantly about the future - 89 per cent said they had been given no indication of what would happen to their child after 16.

The survey found many parents who said that the authority only provided specialist care after a crisis. Autistic children tend to be unusually distressed by a change in routine, yet the lack of co-ordination between different services results in disruption to the child's education.

Instead of "patchy and crisis-led care", parents should be given structured plans for the child as soon as the diagnosis is made, says the report. There are only 3,306 specialist places for the estimated 73,600 autistic and Aspergers' children in the UK; the majority are therefore catered for in mainstream schools or schools for learning difficulties. Wherever they are, this report stresses, they must have expert, intelligent support to prevent them being stranded in an alien world.


Autism is not: * the result of emotional deprivation * a withdrawal into fantasy life due to parental rejection * misunderstood genius (though some individuals have special abilities in narrow areas) * a middle-class disorder * curableAutism is: * a pervasive developmental disorder involving a biological defect in brain function * more likely in boys (4:1 ratio) * a "spectrum disorder" - ranging from severe learning difficulties to average or above average IQ * associated with organic causes such as encephalitis, epilepsy and maternal rubella * genetically linked - some families show a higher incidence associated with unusual responses to sensory stimuli * a lifelong disability Source: the National Autistic Society

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