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Adolescence to Adulthood with Autism in the UK

News Release Date: 14 October 2010

Local authorities fail to deliver correct services; 40% of adults with autism still live at home with their parents and only 12% are in employment

A national conference is being held today to examine the transition of young people with autism into adulthood. This review comes one year after the publication of the NAO (National Audit Office) report, which highlighted huge gaps in service provision for this vulnerable group.

The landmark Autism Act 2009, and the publication of the first ever autism strategy 'fulfilling and rewarding lives' have been significant developments towards improving service provision in the UK. However, bridging the gap from children's to adult services still remains an area in need of improvement. Managing transitions for young people with autism into adulthood requires effective planning and joint working between health, social care, education, housing and employment sectors.

The aim of today's conference is to address some of these issues and share good practice models in delivering and commissioning services, to ensure successful transitions for adults with autism.

The conference will be chaired by Research Autism's Chairman, Geoffrey Maddrell, and will feature speakers from key sectors including: government, health, education and employment. They will share national and regional examples of good practice in ensuring successful and seamless transitions for young people into adulthood, further education, employment and independence.

Richards Mills, Research Autism's Research Director and one of the speakers said:

"One year on from the NAO report, there is still no evidence that the level of expertise in local authorities has increased in line with the recommendations of the report. Consequently they are unable to provide an appropriate assessment of need, and they then struggle to provide suitable services."

There are currently over half a million people with autism in the UK; the large majority being adults. The numbers of those diagnosed with autism is on the rise and the economic cost of support is just over £25 billion* each year, yet the provision of services for this group remains inconsistent. The majority of local authorities and their NHS partners still do not have robust data on the actual number of adults with autism within their area, so they are unable to identify needs and plan accordingly. UK families still find it extremely complicated to get the correct assessment and subsequent diagnosis. It's therefore not surprising that only 12% of adults with autism are in employment and 40% still live at home with their parents.

Geoffrey Maddrell, Chairman of Research Autism, and chair of the conference said:

"Research Autism was not surprised by the NAO's findings last year, which confirmed what people with autism, professionals and their families have long been saying; that there is an appalling lack of joined up and accessible provision for adults with autism. Today's conference is therefore very timely, as each local authority sector must continue to work together and find out where improvements need to be made.

Support for children with autism has improved greatly in recent years; in theory this should mean that these children are known to government services and should benefit from a planned and tailored transition from education into adult life, but this sadly is still not the case. Local authority professionals must therefore receive adequate and tailored training in order to be aware of the wide ranging issues facing those with autism, to prevent misdiagnosis and to ensure the services address the real issues which reduce the level of contribution and fulfilment of those affected. This lack of appropriate help greatly compounds the level of difficulty faced by those affected, and increases the economic cost.

Research Autism strongly advocates the use of evidence based research, and our current research models show that with the correct employment support and mentoring, many adults with ASC can sustain long term education and career paths. We know that with correct and timely intervention the quality of life and outlook can be much improved and adults with autism can live fulfilling lives, whilst also making a valued contribution to the community."

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Notes to editors:

Contacts

Bernard Fleming, Information Manager, Tel. 020 3490 3091, email info@researchautism.net

Research Autism

www.researchautism.net

Research Autism is the only UK charity dedicated to the production of quality, trusted information on autism treatments and other approaches. Its Information Centre is informed by world experts and accredited by the NHS Information Standard, an independent kite-mark of reliability and quality. It guides people through the minefield of interventions on offer, allowing them to make informed decisions based on impartial, factual information, including risks and hazards. Its research programme is derived from the priorities of autistic people and families and addresses areas that affect everyday life. 

Neil Stewart Associates

The conference is being organised by www.neilstewartassociates.com at The Bloomsbury Hotel, London WC1. The conference will help raise understanding through seminars considering accommodation, employment, education, person centred planning, commissioning strategies, personalisation and addressing the needs of young people with complex and severe learning difficulties. It will consider key strategies in planning services more effectively to smooth the transition between children and adult services, and improve economic and quality of life outcomes. Regional examples of how agencies across the public, private and third sector are working together to improve support for adolescents will also be shared.

NAO Report

The NAO Report 2009 was commissioned to explore the problems and challenges of supporting adults with autism. The aim of the report was to assess service provision in areas including: health, social care, education, benefits and employment support. It also identified how these areas could be made more effective, efficient and appropriate to the needs of adults with autism and their carers. The NAO surveyed 150 Local Authorities with Social Services Responsibilities and their NHS Partners between September 2008 and February 2009. The NAO conducted in-house research and surveyed 1,000 GP's via Doctors.net.uk.

  • Primary health care struggling to cope:
    • 80% of GPs feel that they need more training to manage patients with autism more effectively and that local training plans for NHS and social care staff often fail to specifically address the needs of adults with autism.
    • 70% of GPs said that they were not at all confident that adults with autism in their region were receiving appropriate and adequate care for their needs.
    • Only 1 in 5 GPs reported that they kept registers of patients with autism.
    • GPs reported 120,000 new adult patients presenting with suspected undiagnosed high-functioning autism each year.
  • Local Authorities and NHS struggling to cope:
    • Only 18% of Local Authorities and their NHS partners were able to give precise numbers of adults with low functioning autism and only 12% could give numbers of those with high functioning autism.
    • Only 10% of Local Authorities and their NHS partners commissioned ongoing support for adults with high functioning autism from specialist teams; yet this support could enable more adults with autism to live relatively independently in the community.
    • Only 22% of Local Authorities said that their strategy specifically addressed the needs of adults with autism. 74% of Local Authorities and their NHS partners do not have a specific strategy for autism in place and only 50% have a strategic planning group dealing with the needs of adults with autism.
    • 21% of Local Authorities did not know how many children there were with autism in their area and only 45% knew how many children there were with autism or a special educational need (SEN) that had a completed transition plan in place.
    • 65% of Local Authorities and their NHS partners cannot find appropriate residential placements and supported housing within their area for adults with autism; leading to placements further afield which greatly increase costs.
  • Potential not realised:
    • Only 15 % of adults with autism are in full-time employment despite the fact that this group can often offer employers valuable skills. This leads to not only a waste of potential but also severe pressure on families supporting these adults and to Local Authorities. In fact, regular employment can bring positive psychological and social benefits to adults with autism and greatly increase their self esteem and social integration.

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Updated
25 Oct 2017