What the onlookers don't realise is that both boys are autistic, and for them instructions to be quiet hold little, if any, meaning. Mrs Ziegel's life is severely curtailed by her 24-hour job of caring for the boys and yet, as for many other parents, there is no help at hand.

Her attempts to have help from a social worker or to organise respite care to give herself a short break have all failed. She and her husband Jonathan have also had to fight on another front: they took their local council, Richmond-upon-Thames in Surrey, to a tribunal to win funding for essential home tutoring to help their children with their speech.

Even car journeys are a nightmare. Mrs Ziegel, who also has 16-month-old Hector to care for, has been told she cannot be given a disability parking badge, allowing her to park close to a hospital or school, because the boys are not physically disabled.

'Taking one child out of the car and keeping an arm on them so they don't run into the traffic might be possible, but with two four-year-olds like mine, it isn't,' she said.

'The tiniest things present difficulties, like going out to the park, because people are so quick to judge. Our society is not good at understanding or accepting children such as ours.'

Autism is on the increase, for reasons that are still unclear.

It is a lifelong developmental disability which affects an estimated 500,000 people in the UK and comes in degrees of severity, but sufferers tend to have difficulties forming relationships, problems with verbal and non-verbal communication and also a lack of imagination.

This week the National Autistic Society will present a report looking at how few parents with autistic children, or autistic adults, actually receive the benefits and help to which they are entitled.

A survey of 548 members found that more than 60 per cent of carers had difficulties getting support from social services, with many unable to find a social worker they felt understood their needs. One-third of carers openly admitted they didn't understand the benefits system, with two-thirds of those who had made a claim saying they had problems filling out the relevant forms.

People with autism and Asperger's syndrome can receive Disability Living Allowance, according to their needs, but the society found 45 per cent of families on low incomes had gone to appeal to get the desired rate.

In recent years, there has been much publicity over autism's alleged link with the MMR vaccine, but little coverage of how difficult it is for families to cope without outside support. The survey showed only around one-third of carers had received respite care or a short-break service, although this would give the family much-needed time to spend as they wished. Some felt there was a lack of trained staff to take on their children or relatives, others that it was only available if they were in an emergency or crisis.

There is considerable financial cost to families who are looking after autistic children. The first economic study of the additional lifetime costs of the disorder estimated it to be at about £2.9 million per person, much of it due to providing extra educational help.

The Government has stipulated that autistic children must be allowed to enter mainstream education, but they will often need a classroom assistant to help them, as well as therapy to improve their communication skills.

But it is the lack of a basic understanding of the disorders that troubles sufferers. An Asperger's syndrome sufferer told the survey organisers: 'I don't have a social worker now because my past experiences were mostly negative. None of them ever had any knowledge or understanding of the syndrome.

National autistic society
NAS: Autism links
Autism independent UK
Autism Research Unit

 

16.03.2003: Autism is 'two separate illnesses'
10.02.2002: Nick Hornby: Why parents are angry about autism
17.06.2001: Kate Kellaway: Is anybody out there?
14.05.2000: Peter Beaumont: Don't fail these children
21.07.2002: New help for teachers to deal with autism crisis
21.07.2002: Autism crisis: the facts