The House of Lords was the venue for the official launch of the National Autism Project (NAP) on April 28th 2015. On a sunny day which made the most of the terrace overlooking the Thames, around 150 people came to support the creation of this exciting new endeavour. The event was sponsored by Rabbi Julia Neuberger, The Baroness Neuberger DBE, whose support and warm welcome was greatly appreciated by those attending. The Chair of NAP’s Strategy Board, Lady Elizabeth Vallance JP PhD, spoke about the origins of the project and paid tribute to its inspiration by Dame Stephanie (Steve) Shirley, whose Shirley Foundation is financing NAP. Steve was sadly only present at the beginning and the end of the launch meeting as she was involved in a panel discussion on The World at One, whose title tells why Steve was not at the House of Lords throughout. Importantly though, Steve was able to speak briefly about NAP on the programme, an opportunity not to be missed.
Elizabeth spoke about the prevalence of autism spectrum disorder (ASD). The rule of thumb figure of 1% of the population, regarded by some as conservative, still means 650,000 people with the condition. A recent estimate of the UK costs, both direct and indirect, of ASD produced a figure of £32 billion per annum, most of it accounted for by the costs of social care, housing and lost employment in the adult population. The monetary figure, although useful for comparison purposes, takes no account of the bigger issue of quality of life and wellbeing of people with ASD and their families and carers. Moving to the ambitions of NAP, Elizabeth introduced the two phases of the project, the first of which is to map research and practice in the whole field of ASD and examine the evidence base not only for societal benefit but also for economic benefit. She described how the survey will cover not only biomedical research but also healthcare, education, social care and societal perception and understanding. In 18 months NAP will publish an expert report containing recommendations on areas for future research and practice. This is merely the start because in its second phase, NAP will use these recommendations to inform and lobby funders and policy makers for greater investment in research and services for people with ASD. George Bernard Shaw commented that nothing is ever achieved except by unreasonable people. In quoting this, Elizabeth issued a warning that NAP will be implacable and unreasonable in its persistence.
Dr Ian Ragan, the Project Director, then described some of the organisational details of NAP. The work on the economic benefits of research and practice will be undertaken by Professor Martin Knapp and his colleagues, principally Valentina Iemmi, who was introduced at the launch. They will be guided by our Strategy Board and assisted by a group of over 20 experts representing all aspects of ASD research and practice. Several members of the Strategy Board and many of the experts were present at the launch and they were encouraged to meet Valentina and talk about their involvement. Ian expressed his huge appreciation of the enthusiasm shown by the experts for the ambitions of NAP. In addition to these experts, many other people have offered to provide advice to NAP. As Ian explained, they include representatives of many important organisations – the major charities of course, the National Autistic Society, Autistica, Research Autism, the Autism Alliance, Scottish Autism, Autism Spectrum Connections Cymru and Autism NI – but also schools, the Centre for Social Justice, the National Institute for Health and Care Excellence, the Gatsby Charitable Foundation, Specialisterne (which promotes employment of adults with ASD), MQ the mental health charity, Sense about Science and the Progress Educational Trust.
Most of these people were present at the launch and Ian explained that since the report aims first and foremost to be authoritative we hope that these organisations and others will support our recommendations and conclusions and put their weight behind ensuring that what we all agree on is translated into policy.
The launch meeting was a great opportunity for supporters of NAP to meet each other and to get a better understanding of the project. We were very pleased that members of the ASD community also attended. The project is pointless without their support and their involvement on the Strategy Board is vital in ensuring that whatever we recommend contributes to the wellbeing of people with ASD. That is our entirely rational aim, in the pursuit of which we will be, as the Chair said, unreasonably single-minded.