Live and learn

As the number of children with autism reaches critical levels, Charlotte Moore argues that the government is failing them

Charlotte Moore
Guardian

Wednesday January 16, 2002

Autism is not the rare condition it was once considered to be. Its incidence is fast approaching critical levels. Opinions vary, but the "official" UK estimate cites 91 per 10,000 - nearly 1% of the population - as being on the autistic spectrum. This is almost certainly an underestimate; autism is still more likely to be under- than over-diagnosed. And a recent survey carried out by the all party parliamentary group on autism (APPGA) found that 87% of responding local education authorities perceived an increase in the past five years. The highest reported increase was 77%. Only six LEAs reported no increase.

Discussion of the reasons for this apparent epidemic has centred round the MMR immunisation controversy; press coverage has been energetic. As one would expect, most parents suspect a "real" cause, such as MMR or diet, while most health professionals put it down to a broadening definition of the autistic spectrum and more efficient diagnosis. Whatever the causes - and I would guess there are several, some as yet undiscovered - the problem is not going to go away. Autistic children are woefully under-catered for by our education system. A survey by the National Autistic Society, which is marking its 40th anniversary this week, finds that "where autism-specific support was provided, parents' satisfaction levels were at their highest". Well, there's a surprise!

A mere 17% of the children covered by the APPGA survey, however, were in an autism-specific school. Parents' Autism Campaign for Education (Pace) estimates that nationwide there are only 4,000 specialist places for the 25,000 who need them. The government backs inclusion in mainstream schools where possible, but only 5% of mainstream teachers have any autism-specific training, although 70% will have had to work with a child with autism. The "training", in any case, may consist of no more than participation in a one-day course.

Autistic people are expensive. It is currently reckoned that the additional lifetime cost of each autistic individual is £2.9m. Untrained, autistic people are incapable of looking after themselves. Unsupervised, many are a danger to themselves and other people.

You can't cure autism, but you can reduce its ill-effects. Early intervention is the best way to maximise the child's chances of semi-independent living - which, of course, is the only way to decrease the colossal care bill. The government signalled its enthusiasm for early intervention in a 1997 green paper: "Early intervention helps a significant number to overcome their disability sufficiently to attend mainstream schools... there is a consensus of findings that early intensive education... can produce significant changes in children with an ASD [autistic spectrum disorder]." But there is a virtual absence of provision for the under-fives. The problem is made worse by an idiotic reluctance on the part of some authorities to produce a diagnosis.

"Some of my colleagues don't want to give a diagnosis because they're afraid of upsetting the parents," one paediatrician told me. This is culpable cowardice. According to the APPGA survey, 40% of families waited over three years for a diagnosis, while 10% waited more than 10 years. There is a misguided desire to avoid "labelling". In my experience, it would be hard to find a section of the population who care less about being "labelled" than autistic people, most of whom have no interest in what other people think of them.

So diagnoses are pointlessly, even cruelly, delayed, intervention is not provided, and those precious early years tick by. A pattern of failure emerges, where the ASD child, often without a statement of special educational need due to the absence of a diagnosis, is placed in a mainstream school. It's not too bad at first, because small children are very accepting, and low skill levels, whether academic or social, are not so obvious in a five year old. But around the age of seven or eight, when the herd instinct really takes a grip, the social isolation of the ASD child is fully revealed, often with traumatic results for all concerned. It is decreed that the child be moved, but to where?

LEAs like to fit children into mild, moderate or severe learning disability categories, but this is not appropriate for the uneven learning ability of the autistic child. Autists cover the whole IQ range, from imbecile to genius; it is far more helpful to consider the condition as a social, rather than a mental, handicap. I once met an immensely able autistic woman who had a research post at Cambridge University. Because of her intellect, she had endured the horrors of being a misfit in mainstream education; because of her autism, she had been unable to express her unhappiness. "Whatever you do," she told me, "don't put your sons in a normal school."

And it's all very well for the government to radiate enthusiasm for its inclusion policy, but mainstream schools are often reluctant to implement it. There are many examples of excellent practice - all credit to them - but there are also many schools that do not want to accept ASD children, who are 20 times more likely to be excluded than their peers. A parent from a north London borough reports that "although the LEA was prepared to fund full support for him in mainstream, I phoned around 20 schools and was rejected".

No wonder increasing numbers of parents are turning to home schooling. Here, the main difficulty is funding. Parents and LEAs are often in conflict about methodology; parents passionately advocate a home therapy programme such as ABA/Lovaas (my own choice), or Options, while the local authority remains unconvinced. Short-term budgetary considerations prevent LEAs from investing in educational strategies that would yield long-term benefits. To achieve their goal, whether for home education or special school placement, a worryingly high number of families resort to tribunals. Almost half the LEAs in the APPGA survey had been taken to tribunal in 1999/2000. Pace reports a 360% rise in the number of tribunals over the four years, and this figure doesn't include "eleventh-hour" settlements.

Pace has identified a "responsibility vacuum" between central and local government. There is no coherent strategy across LEAs; departments of education, health, and social services fail to pool budgets and data. There is an urgent need for a strategic planning of provision. We need more research, more accredited training, more specialist school places - including residential places, for those children who need a 24-hour curriculum. We need early intervention, swifter diagnosis, more funding for home-based programmes. If the government can implement all this, it can create a containable problem out of what threatens to become a national emergency.

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