Good Practice: How wide range of autism support helps young people and parents

Project
Midlands Psychology's Autism Service

Funding
The service is commissioned by the local clinical commissioning group covering five areas. Midlands Psychology is bidding to continue running the service

Background
Services for Staffordshire families affected by autism were previously characterised by long waiting lists and inconsistent support. In 2009, a service for children from birth to 19 was put out to tender by the then South Staffordshire Primary Care Trust and the contract was won by not-for-profit social enterprise Midlands Psychology. "It was a huge thing for us and a huge thing for families with waiting lists of up to three years," says director of service Angela Southall.

Action
One of the first steps was to get rid of the waiting lists so Midlands Psychology drafted in experts and set up assessment clinics in libraries, schools and other venues to swiftly clear the backlog.

As well as offering assessment and diagnostic services to about 600 new children a year, the service provides a wide range of ongoing support. Its 15-strong team combines expertise in clinical psychology, educational psychology, nursing, speech and language therapy, occupational therapy and psychiatry. "We try to take a very integrated approach, says Southall. "Each child has an autism care plan that incorporates education, social care and health."

The services take referrals from "anyone who knows the child", while families that already have a diagnosis come to them direct. Southall believes it offers one of the widest ranges of interventions in the country, including group work, counselling, parenting programmes, individual therapy such as person-centred and cognitive behavioural therapy, and family therapy.

Support for families includes an introduction to autism rolling programme to help parents understand the condition and practicalities like claiming benefits and navigating the education system. Working closely with parents is at the heart of the service's ethos with parents directly involved in running the service, advising on how it develops and delivering it. "Parents are the experts on their children," says Southall. "They are part of the decision making and an integral part of what we do." The introduction to autism programme is co-ordinated by parent liaison worker Machita Denny, who has two grown-up sons with autism.

Among groups on offer to children and young people are "adaptive skills" sessions to help support social and communication skills; a four-week "I am me" course to help recently diagnosed children understand that diagnosis; and "introduction to emotions" groups to help children understand and handle their emotions.

The service also provides training to professionals who work with children and families. It recently undertook a six-month scheme to boost joint work with schools and streamline family support, which included extensive consultation with parents, children and special educational needs co-ordinators.

Outcome
The service evaluates every aspect of its work using a range of quantitative and qualitative measures. The most recent quarterly report from October to December 2013 shows 38 parents benefited from the introduction to autism programme. Before embarking on the programme, parents on average rated their knowledge of autism 4.9 out of 10 increasing to 7.4 after the course.

Scores for children on the adaptive skills course - measured using social skills questionnaires - increased significantly. Meanwhile, the counselling service worked with 56 children. Children embarking on counselling and cognitive behavioural therapy are generally highly distressed with an average score of 23 - where scores above 20 are classed as severe. On average, these scores drop to 10, which is the clinical cut-off.

The service uses experiences of services questionnaires to gather feedback. In this quarter, 100 per cent of families said they were taken seriously - 94.1 per cent said this was fully the case and 5.9 per cent said this was somewhat true. All families said they had been helped by the service, while 97.1 per cent said they would recommend it to others. The service recently won the Innovative Family Support and Clinical Excellence award at the National Autistic Society's Autism Professional Awards.

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POSITIVE FEEDBACK FROM PARENTS

Results from questionnaires completed by parents from October to December 2013

The service took us seriously

5.9% Somewhat true

94.1% Fully the case

Would recommend to others

2.9% Somewhat likely to

97.1% Definitely

Source: Midlands Psychology