Why Families With Autistic Chilldren Are Struggling For Support

Alex is not a disturbed child, although he could easily be mistaken for one. Sitting in his classroom, he often looks out of the window, and then his restlessness becomes infectious and begins to distract the other kids. Asked to read a sentence, Alex becomes recalcitrant, unwilling to try.

In the past year his autism has become more visible, more worrying. Last summer he began trying to harm himself. And then one day his mother Tracey found him on a window ledge at home, threatening to throw himself off. He was eight years old.

‘The pressure of school was too much, I think,’ says Tracey. ‘Quite often, he was punished by being sent to the naughty room. Alex would get anxious, as he couldn’t understand the lesson, and then he would distract the others. I felt he was such a sad little boy.’

Finally, Alex’s family moved him to a school closer to his home in Philadelphia, near Sunderland. The new school has been more supportive, yet still cannot meet all his needs.

There are 90,000 children in Britain who have what is known as an autistic spectrum disorder (ASD). This lifelong disability, the result of a complex and thus far baffling interaction between the environment and genes, occurs in varying degrees of severity, and includes Asperger’s syndrome. With one in every 100 children now affected by ASD, the challenge for the education system is to see how it can give them the tools they need to be able to prepare for life at 18.

But in many respects, sufferers lack the very skills our society increasingly takes for granted. At the heart of ASD lies what doctors call a ‘triad of impairments’ – difficulties forming social relationships, problems with both verbal and non-verbal communication, and the development of strong, narrow and often obsessional interests. For most families, the biggest impairment of all lies in the inability of others to accept their children, and to accept that they have particular educational needs that don’t slot neatly into any easy category.

Some parents spot the symptoms immediately in their toddlers – a lack of eye contact, difficult behaviour, screaming, or an obsession with lining up rows of toy cars, followed by tantrums if one of them is even slightly moved.Tracey didn’t realise that Alex had problems until he was around six years old, when she went to a parents’ evening and the teacher began to talk about her son’s problems with learning, and his withdrawn behaviour.

Right now Tracey and her family are going through the ordeal of trying to have both their sons, Alex, now nine, and Aaron, four, statemented. This is a statutory assessment, leading to a statement of special educational need (SEN), which has to be carried out by a qualifiededucational psychologist. It enables parents to find out exactly what their autistic child is entitled to in terms of extra support. That might encompass speech therapy, a classroom assistant, or different books.

But if ‘statementing’ is a straightforward word, for thousands of parents around the UK it masks a world of uncertainties, delays, incredible bureaucracy and ultimately, for some, rejection. ‘I know that we have to ask for a statement,’ Tracey says, ‘but the school has done everything possible to put us off. They tell me Alex doesn’t need one. But I’ve come to realise he is not getting the help he needs. I think he could grasp things if they were explained to him in a different way, but there isn’t any one-to-one support. I’m really worried that if he doesn’t get that help soon, it will be too late.’

Tracey’s younger son Aaron has already been diagnosed with autism. ‘His condition is worse,’ she says, ‘and he’ll be much further behind. I feel that time is against us. I know it can take years to go through this procedure.’

The catch is that a statement, which has legal force, can only be processed if the local authority agrees to it. And if it does agree, and the statement shows that the child needs a lot of support, the authority will have to allocate many thousands of pounds of extra funding from its limited budget into care for that child.

An untold number of applications for statements, probably running into many thousands (no official statistics are kept), are being turned down each year in the hope that people won’t appeal against the decision. What is on record is that there are around 90,000 children with autism in Britain. Around 229,100 children – 2.8 per cent of all pupils – have received SEN statements, most of whom will not be on the autistic spectrum. Pupils and their families have to wait years to get the assessment – it mostly happens around the age of 13, long after their teachers (usually) have realised that the pupil has particular learning difficulties.

Three years ago the government, being well aware of how legally fraught and expensive the statementing system was becoming, decided to try to reduce the numbers going through the process by making money available directly to the schools. Theoretically, more children should have received the help they needed because the schools now hold these budgets, under what is known as delegated funding. Primary and secondary schools run schemes known as School Action and School Action Plus to provide extra support for children. They also have an SEN co-ordinator who can assess whether the children need special learning materials, equipment or therapy.

And yet it doesn’t seem to be working. Much of the money has gone into mainstream schools, but there is a suspicion that because the sums are not ring-fenced, it drifts into other areas of education. Parents become desperate as they see their children languishing on the bottom table in class, and realise that unless they go down the statement route they may never persuade the school to find the extra help for them.

Beth Reid, policy officer with the National Autistic Society (NAS), says: ‘We do know that the number of tribunals being held against the refusal of a statement has risen by 60 per cent since 1997. And we also know that last year, 23 per cent of all these tribunals were for children with autism as their primary need. But many more children with statements could have ASD along with other conditions.’

The NAS’s advocacy service takes 1,800 calls a year from parents having problems with their child’s education. As Reid’s colleague Caroline Hattersley puts it: ‘Parents are very confused by the whole system, and no one is out there making it deliberately easier for them. It can take many months to sort out, and if the school is not backing you in your claim, then that makes it pretty tough.’

One mother has even trained herself as a lawyer simply to deal with her son’s case. Julie Maynard spent years fighting to get a proper assessment for her son Joshua. When she began to think about how a family on a low income could afford it, she realised they couldn’t. Now she acts in a voluntary capacity, helping parents to fight what she describes as the ‘bean counters’.

In her sitting room sits Jack, a 12-year-old boy who has run away from his school in Hertfordshire. ‘He just walked out of school, through a park that is full of drug dealers, and broke into his own home. Then he rang his mum to say he was hungry,’ says Julie. ‘The school has now said that she will have to take him home at lunch time – every lunch time – because they can’t cope. So she’s had to give up her job.’

Julie, who works as a lay representative for families at special educational needs tribunals, is now trying to find Jack’s mum some free specialist help, so that she can take on the system and get Jack back into school.

Research suggests that 21 per cent of all children with ASD will end up excluded from school at some point in their lives – either for a fixed period or permanently. Many of the specialist units attached to state schools have closed over recent years, as the money has gone elsewhere – although once again, no figures are available. Julie’s son Joshua was in such a unit until it closed down. After going to a tribunal herself, Joshua is now at a specialist school in Godalming where he is being helped to follow a GCSE curriculum.

‘What really upsets me,’ Julie says, ‘is that vulnerable children are being systemically failed by bean counters and ideologists, and the pupils it affects the most are those like Jack, whose parents cannot afford to pay vast legal fees to exercise their children’s entitlements.’ She shakes her head with incomprehension. ‘When you need a heart operation you see a cardiologist, you don’t go to your GP. Why can’t we adopt that simple premise in education?’

One ray of hope, however, is that the issue is moving up the political agenda. This summer the Conservative leader David Cameron promised to increase the number of places at special schools and reverse the closure of such institutions. He also challenged the ideology of ‘inclusion’ – the assumption that special-needs children should be taught in mainstream schools wherever possible.

Cameron’s son, Ivan, was born severely disabled and needs round-the-clock care. Ever since he entered the Commons, Cameron has made a point of defending specialist education, but is also careful not to talk much about his son’s disability. In 2005 he set up a commission to look at the issue of special needs education, headed by the eminent education expert Sir Robert Balchin. In an interim report, Balchin and his team made it clear that they favour a fairer and more independent assessment process, so that the decision to award a statement would not be made by a local authority, the body that holds the purse strings.

‘The current system is hugely painful for families, particularly if at the end of it nothing happens,’ says Balchin, a former education adviser to the Conservative government in the early Nineties. ‘A lot of lawyers and experts are taken on by both sides, but with little chance of succeeding at the end of it. And I think that if you are not an articulate parent who has time to spend fighting your case, it’s that much harder. My view,’ he adds, ‘is that an independent assessment would greatly improve the system, and make sure that the money is allocated far more accurately.’

Balchin points out that Britain has 16 per cent of all pupils marked down as having an SEN, while in other countries it is just 3-5 per cent. ‘That clearly can’t be right. We are convinced that the vast majority of those have not been taught to read and write properly, and have general behavioural problems. A new system which dealt with those problems properly in the classroom would save an enormous sum, and the money could actually be spent where it’s most needed.’

In a statement, Lord Adonis, the government minister responsible for special educational needs, said that improving the life chances of children with special educational needs and disabilities was ‘an absolute priority for us. A key part of that is equipping teachers with the skills and confidence to help children with a range of special educational needs. Overall,’ he said, ‘funding for special educational needs provision has risen by more than £1bn and now stands at £4.5bn.’

The NAS believes that the government has done much to try to help children, and it feels that pupils with ASD can cope well with mainstream school if they are given the right level of support. Lord Adonis’s new programme for training teachers will include providing materials aimed at increasing their understanding of autism. But their own surveys suggest that for far too many sufferers, secondary schools are a very stressful environment.

One mother who ended up at an educational tribunal fighting for her son is Nusrat Mirza. Twelve-year-old Ayman has severe autism, while his twin sister, Antara, does not. He now attends a residential school in Kent where Nusrat and her husband Erfan are pleased with the education, although reaching this point has been a long, hard struggle.

‘By the time he was seven, things were becoming very difficult,’ Nusrat admits with some reluctance, as she sits in her kitchen in Putney, southwest London. ‘Ayman was becoming challenging. He wouldn’t sleep at night and he would have terrible tantrums. Also, he was becoming physically stronger, which was becoming hard, too.’

For a while, Nusrat kept him at home using an educational programme known as applied behavioural analysis (ABA), a system of intensive training from a young age aimed at helping improve the memory and behaviour of the child. ‘That worked, and did improve his functioning, but I began to feel he needed to be with his peers. It wasn’t enough.’

The family took out a loan of £10,000 to pay for lawyers and experts so that they could take their local authority, Wandsworth, to a tribunal to challenge their decision not to allow him to go to a residential school in Dorset, which they felt was appropriate. ‘They wanted him instead to go to a local day school which was for children of mixed needs. They could not possibly have met the needs of Ayman, who has no verbal communication. We also needed to have some kind of family life at home for my daughter,’ Nusrat adds. ‘I don’t think they really understood what it was like.’

Their tribunal failed, but eventually Ayman was able to go to Bradstow School in Kent, a residential school maintained by Wandsworth council for children with severe autism. He goes home during holidays and the family takes him out every three weeks. ‘He has a future, and we have a future now,’ said Nusrat. ‘I just wish our journey getting to this point had been a little less fraught.’

How we see people with ASD, a complex disability which is never the same in any two people, probably says more about the people without it than those with it. Much of the problem in educating children with the condition has been that the public finds it hard to engage with people whose world is so different.

The photographs we have published on these pages are taken from an exhibition beginning this week in London, and then touring the UK, exploring how people with autism see life. The exhibition is part of the NAS ‘Think Differently About Autism’ campaign, which is trying to overcome the gulf between the public’s understanding of the condition and the reality of a diagnosis. It’s a big gap, and probably one that will never be fully bridged.

One of the photos is of Ayman Mirza cradling his toy guitar. A poem written by Antara to her brother is on his school’s website, and gives you an indication of how she misses him and his unconventional musicality:

‘The world he finds hard to understand,
Words mean nothing to him,
Music is his life,
In his own way he can sing.’

· The As I See It exhibition features photographs taken of and by people of different ages and gender with varying levels of autism. The exhibition runs from tomorrow until 4 November at The Gallery on Charing Cross Road, London. It will then travel throughout the UK as part of the Think Differently About Autism campaign (www.think-differently.org.uk)