Parents of autistic children cope forced to cope with patchy support

Support for families with an autistic child is often patchy and hard to negotiate. Derren Hayes looks at what is needed and explores some of the existing services

When it comes to support for autistic children, statutory services tend to focus on how to meet their educational needs. Anything provided outside of this is largely discretionary on the part of the local authority and dictated by ever-tighter eligibility criteria. However, a recent high court ruling that found a London council had acted unlawfully when withdrawing support to an autistic child could change this.

This lack of a consistent national approach can leave some parents of autistic children unsure whether they are eligible for support, what services are available in their area, and where to go to access them. This can lead to parents feeling they are on their own, says Lintilla Turner, head of helplines at the National Autistic Society (NAS).

“Parents get a diagnosis and are often left with it,” says Turner. “The sheer number of calls to the helpline shows there is a lack of a clear path as to where people need to go for information and support. There’s also a postcode lottery so that what is available in one area may not be in a neighbouring one.”

Service needs

What is really needed, says Turner, is a standardised service across the country for parents to use when their child is diagnosed with autism. This would explain the condition, the effect it will have on their child’s life and how best to cope with it, rather than parents having to do it themselves.

The support needed is not necessarily sophisticated but is easily overlooked, says Andy Morris, who runs a Barnardo’s service in Yorkshire (see box below). “Most of what we learn about parenting is from family and friends. This often works fine with general childcare, but a young person on the autistic spectrum will present all the usual parenting challenges, plus quite a few more.”

Many parents take the DIY approach and research the condition before trying to find out what service options might be available locally. “The system is very difficult to navigate,” says Turner. “Which bits fall under the responsibility of education, health and social services is very difficult to know.”

Lack of co-ordination

For John Franklin, who runs a fathers’ support service in Kent, the lack of co-ordination in the system is particularly frustrating. “You have to do all the delving yourself,” he says. “That’s what is at the heart of the abysmal situation of support in the UK. Support from authorities is there but you only find out about it by going to parent support groups. It is about agencies not talking to one another.”

With local statutory support for parents of autistic children patchy at best and non-existent in some areas, a network of voluntary groups – including about 60 branches run by the NAS volunteers and parents – have sprung up to fill the void. Many provide information and advice, encourage self-help for parents and carers, organise respite care, run educational workshops and raise money and awareness of the condition locally.

Local support

Turner says these groups are usually run by volunteers or parents with autistic children. “People want local support and to know there is someone they can talk to,” she says. “Some are small ‘front room’ groups where people can share their experiences.”

The NAS Early Bird and Early Bird Plus support programmes are available in some local authorities for children up to eight, but for older children there is less provision.

The NAS also runs a parental support telephone helpline which offers emotional support and is itself staffed by parents with autistic children. “We talk through coping strategies and give information about support groups and what there is local to them,” says Turner. “But some people don’t want advice – they want to let off steam to someone who has been there.”

That it receives 40,000 calls a year is undoubtedly a testament to the value of this service. But it is also a sad reflection of the scale of support needs among parents of autistic children across the UK.

• Read about the important eligibility High Court ruling:

The Fathers’ Club, Kent

Forum addresses the needs of fathers

The Fathers’ Club was set up by John Franklin six years ago after he became aware that most parenting support offered by Kent Council or voluntary groups was failing to reach the dads of autistic children. “Many fathers were finding it difficult to cope but there was nowhere for them to go and share their problems and get help,” says Franklin.

The club meets three times a month at different venues across the county and there are now about 120 members. Franklin says it provides “a forum for fathers to debate issues, discuss what has worked for them and share best practice”. He says this is a major step for many of those attending because “men are not very good at discussing their emotions and feelings”.

As well as providing time to talk, there are speakers and autism-friendly film showings at the meetings, and a library service offering relevant books. Franklin also provides support to members between meetings and puts together a quarterly newsletter, keeping those who are unable to attend regularly in touch with group developments.

Group members come from all walks of life – some are senior lawyers while others are manual workers – but Franklin says they all support each other. “We had a father who said at his first meeting he didn’t want to wake up in the morning. A year on he says the club saved his life.”

For more information, contact the Kent Autistic Trust 

Barnardo’s Yorkshire Cygnet

Chance to discuss and share experiences

Targeted at the parents of autistic children and young people aged seven to 18, Cygnet is a parenting support programme that brings people together to discuss their experiences and offer advice on how to overcome common pitfalls with the help of a specially trained facilitator with a detailed knowledge of autism.

The programme is presented informally to groups of no more than 12 parents, and consists of six three-hour sessions with a follow-up session three months later. Both parents and carers are encouraged to attend, with places also available to grandparents and professionals if appropriate.

Discussions focus on the practical aspects of caring for an autistic child. Nikki, whose sons George, seven, and Thomas, 12, are on the autistic spectrum, explains how the programme has better equipped her for dealing with potentially difficult everyday scenarios: “I am less likely to panic in a supermarket and think I’ll have to leave because George is becoming agitated, but instead can start thinking of the possible triggers for his behaviour.

“As I am now more aware of his sensory needs I think of the impact of supermarket music or noise generally. Time away – in the toilets, changing the shopping trolley outside, or using his ipod – usually does the trick,” she adds.

Initially delivered across Bradford, the programme has now been sold to around 40 health, education and care organisations in the past nine months. Evaluation by Northumberland University found parents’ confidence in their ability to manage their child’s behaviour doubled after attending the course, while the programme was a regional winner in the National Training Awards last year.

Cygnet co-ordinator Andy Morris says one of the programme’s aims is to tackle the information vacuum: “The expectation is that each organisation that purchases it will put an information sheet together to point parents where to go to use services.”

It has already filled the 300 places on a two-day training programme for course facilitators, with 400 professionals from a range of agencies signing up to one of the 16 courses. “This highlights the appetite for information, particularly among those professionals directly involved with children on the autistic spectrum.”

For more contact Barnardo’s 

Published in the 2 April 2009 issue of Community Care under the heading Finding Help with Autism