National Autism Project – Helping to unlock the secrets of autism

The Guardian provided the first media interest in the National Autism Project on April 29th in an article entitled “Helping to unlock the secrets of autism” by Nicola Slawson. The article is reproduced below.

A new national project using technology and interactive programmes aims to change how we address the lifelong condition that costs £32bn annually

A picture of the House of Lords has been stuck to Ann Harber’s wall for months. Next to it is her daily schedule which is made from pictures to represent things like breakfast and an aerobics class stuck on a strip of velcro. Every evening she takes pleasure in creating it.

Harber, 54 is autistic, with severe learning difficulties and limited speech. On Tuesday, she was one of the special guests invited to the House of Lords for the launch of the National Autism Project which she will participate in. Her involvement follows the success of work over the past five years with her key worker, Katie Nurse, on improving her communication and vocabulary using iPads, picture dictionaries and interactive schedules like the one on her wall. Since they began, Harber has gone from using just 15 words to more than 600 and even gave a presentation at the National Autistic Society’s inclusion and participation conference last year.

The National Autism Project aims to create a more strategic approach to addressing the challenges of the condition. It has been funded by entrepreneur and philanthropist Dame Stephanie Shirley.

“Research has started to unlock the secrets of autism but we are a long way from seeing that turned into better life chances for those with the condition,” says Shirley, whose late son Giles was autistic. Harber is one of around 650,000 people who have been diagnosed as autistic. In June, researchers at the London School of Economics put the annual cost of the disorder at £32bn a year, more than any other medical condition and almost three times that of cancer because it is a lifelong condition that affects more than 1% of the population. The figure includes indirect costs such as housing, social care, education, and the financial impact when family members have to give up work to become carers. Despite this, experts say the amount of money spent on autism research is tiny.

Project director, Dr Ian Ragan says: “What we want to do is try and redress the balance by making government aware of the huge costs involved and show how they could better use money to improve the quality of life for people with autism.”

The project doesn’t want to just help those with the condition, but also their families, carers and the community. “The impact is very widespread and if we can find something to help people become more independent and more self confident, and help society integrate them more effectively, you can see how it would have a huge knock-on effect not least because it would save the government so much money,” Ragan argues.

Dinah Murray, an autism researcher who is herself on the spectrum, is a member of the project’s strategy board. She will be heading a panel of six advisers including Harber, who all have the condition. In addition, 20 experts have been invited to look into all areas of the project’s remit. In 18 months it will report on how both the government and research bodies could best invest in further research and projects to improve the lives of those with autism.

“Before she used to scream with frustration and take hours to get ready, now she takes 20 minutes and is calm.”

Harber’s development has amazed both her family and the staff at Derby House, a learning disability care home in Epsom run by Surrey and Borders Partnership NHS foundation trust where Harber is a resident. Nurse was asked to come up with some sort of intervention and decided to try to help with communication because it caused Harber a lot of frustration. “It’s hard to work out what she’s saying a lot of the time,” says Nurse.

At first, Nurse introduced a speech and language therapist who used a simple sign language but Harber seemed more interested in the pictures they brought along. “I’d read about an autistic boy in America whose dad had bought him an iPad so I wanted to see if there was any interest or any ability to swipe and use the icons on my phone. Ann really liked it,” recalls Nurse.

She was just starting a masters in adult autism at the University of Birmingham and decided to do her research on the use of technology in autistic adults with Harber as her main case study. The foundation trust bought an iPad, iPod touch and a specialist app, Proloquo2go which converts symbols and text into speech. Nurse also introduced a personalised picture book system.

Harber’s vocabulary has improved dramatically, along with her confidence and behaviour. Where before she used to scream with frustration and take hours to get ready, now she takes 20 minutes and remains calm, says Nurse, thanks largely to her habit of creating a visual schedule of her day both in her bedroom and on the interactive whiteboard in the communal area.

“Every day Ann asks me to help her set up her schedule. It’s very important to her and takes away a lot of her anxiety. She’s very visual,” says Nurse, who printed off pictures of all the people Harber would meet at the project’s launch. To prepare for the panel’s work, Nurse has begun creating a series of pictures such as thumbs up and thumbs down. Harber’s family can’t get over the difference. Her older sister, Theresa, says: “She’s almost a different person. We’ve noticed how her confidence has built. It’s empowered her to say yes or no. We now know what Ann really wants and what she does and doesn’t like.

“If someone Ann’s age can improve so dramatically then who knows what else is possible. Her abilities were hidden before so we couldn’t be happier with the work she’s done with Katie.”

Asked if she was looking forward to taking part in the project, Harber replies: “Yes”. Especially to meeting the others on the panel, according to Nurse.

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