Research Autism Hosts National Conference: ‘Falling through the cracks’: Why is the outcome so poor for adults with autism?

16 July 2009

The national conference, hosted today by UK charity Research Autism, aims to explore why the outcomes are so poor for adults with autism in the UK and to identify appropriate solutions to this problem.

The conference takes place following the recent release of The National Audit Office (NAO) report. The aim of the report was to assess current service provision for adults with autism in areas including: health, social care, education, benefits and employment support. The report confirms that there are large numbers of adults with autism in the UK who are totally unaccounted for; leading to poor and inappropriate support. Only 12% of Local Authorities and their NHS partners hold accurate data on the actual number of more able adults with autism, including Asperger syndrome; and only 18% could give numbers of those with more severe forms of autism, within their area.

The report also revealed that frontline service providers lack the ability to recognise autism and therefore to support the needs; 80% of GPs feel that they require more training to manage patients with autism more effectively.

There are currently over half a million children and adults with autism in the UK; the large majority of whom are adults. The number diagnosed with autism is on the rise. The annual economic cost of support is just over £25 billion (1), yet the NAO report shows that this vulnerable group is not being adequately supported.

It is for this reason Research Autism felt it necessary to hold such a conference; to bring together key decision makers; to work together to explore appropriate solutions. Delegates at the conference include: individuals with autism spectrum conditions and their families, politicians, civil servants, senior staff in the health and social care sector, senior staff in the independent sector; including private and voluntary service providers and supporters of Research Autism.

Speakers at the conference amongst others, include: the Rt. Hon David Cameron, MP, and Leader of the Opposition; Phil Hope, MP, Minister of State for Care Services, Joe Powell; an adult with Asperger’s Syndrome, Mark Davies of the National Audit Office, Professor Patricia Howlin and Professor Terry Brugha; both leading experts in the field of autism research.

Geoffrey Maddrell, Chairman of Research Autism says: “The NAO Report confirmed what people with autism, professionals and their families have long been saying: that there is an appalling lack of knowledge on the numbers of those affected and their experiences at each transition point. Research Autism felt it was imperative to hold the conference to not only raise awareness of this wasteful and unjust situation, but to find appropriate solutions. One of the key aims is to find out what is currently known about the exact numbers and needs of adults with autism in the UK. It is very important to remember that autism requires very specific support. 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, and make a valued contribution to the community.”

Research Autism believes that with the correct support many adults with autism can also sustain successful education and employment, in various sectors. In fact, the charity recently carried out an employment research report, which found that over 70% of employers interviewed expressed satisfaction with the experience of employing someone with autism; and over half of all employers identified specific advantages of doing so. An overwhelming 84% of the employees with autism/Asperger’s Syndrome said that they were happy with their jobs, and the specialist employment support they were receiving.

Joe Powell, a 32 year old man with Asperger’s Syndrome says: “Good practice in autism does not necessarily boil down to money or complicated intellectual theories but in getting the fundamentals and principles in place for giving people the best lives we possibly can. Autism is not necessarily difficult to work with at all, it may be difficult to understand but working with it does not have to be as difficult as sometimes we make it. Perhaps we need to change the way we think as a society about autism and how we can support people with autism.”

Geoffrey Maddrell concludes: “We may not know the exact causes of autism; but there is an essential need for better coordinated and informed responses across the lifespan; the starting point for this has to be research. We hope today’s conference allows the Government to start work to resolve this unfair and wasteful situation for adults with autism. Research Autism will continue to play an important role in this work; through our own research, and by evaluating autism interventions and informing key professionals of the results.”

Peter Cruddas, Founder of The Peter Cruddas Foundation and main sponsor of the conference says: “We have been following the work of Research Autism for some time, and the Trustees of the Peter Cruddas Foundation are delighted to sponsor such an important conference. We are proud to be able to support such positive progress that hopes to find important solutions to the difficult situation facing many UK adults with autism and their carers everyday.”

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For further media information, details on the employment research report or to interview Geoffrey Maddrell or a Research Autism spokesperson please contact: Atia Islam Talukder on 07976 704025 or email press@researchautism.net

1. The NAO surveyed 150 Local Authorities with Social Services Responsibilities and their NHS Partners between September 2008 and February 2009.

Notes to Editors:

Autism

Autism is a developmental condition arising out of brain differences affecting over 500,000 children and adults in the UK. The symptoms of autism vary considerably but always affect instinctive social behaviour and communication. This can lead to severe stress, isolation and a failure to achieve academic and other potential. The causes of autism are not known. Genetic factors are important. There are a host of treatments and other interventions but very few have been evaluated and even fewer are effective.

Research Autism

Research Autism is the only research charity with a sole focus on interventions in autism. We were established as an independent charity with the support of the National Autistic Society to address concerns of its members about the dearth of high quality scientific research in this area. With Cambridge University as our research sponsor, we have enlisted some of the most eminent figures from the world of autism to work with us; they give of their time for free. Our web based information service, through which we disseminate research findings, attracts over 25,000 visitors a month, demonstrating the demand for impartial information on the effectiveness of autism treatments.

Research projects

Research Autism is committed to a programme of research that will improve quality of life and support social inclusion. Projects under development or underway include:

Sleep problems in autism
Behavioural difficulties in autism
Prevalence of autism in specific populations- e.g. criminal justice
Evaluation of a number of specific treatment interventions and approaches for children
Evaluation of employment and mentoring schemes for adults
Establishment of collaborative research forums and networks

The findings of these projects will make a significant difference to our understanding of the scale and nature of the issues, and what needs to be done to make social inclusion a reality for those affected by autism.

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Research Autism Hosts National Conference: ‘Falling through the cracks’: Why is the outcome so poor for adults with autism?

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Notes to Editors:

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