The NHS should better recognise the signs and symptoms of autism in adults to improve their quality of life and employment opportunities, advises NICE in new guidance out today (27 June).

There are estimated to be over 500,000 people in the UK with an autism spectrum condition (ASC) including Asperger syndrome; the majority are diagnosed in childhood and adolescence. While there are many support services and care options available, if left undiagnosed or undetected, autism can cause feelings of isolation, confusion and social and economic exclusion.

NICE has published its first clinical guideline on how to recognise, refer, diagnose and manage autism in adults. In this, healthcare professionals are advised to consider a diagnostic assessment for autism when an adult has:

• One or more of the following:
  
  
  • Persistent difficulties in social interaction
  • Persistent difficulties in social communication
  • Stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests, and
• One or more of the following:
  
  
  • Problems in obtaining or sustaining employment or education
  • Difficulties in initiating or sustaining social relationships
  • Previous or current contact with mental health or learning disability services
  • A history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or ‘mental disorder'.

Professor Mark Baker, Director of the Centre for Clinical Practice at NICE said: “This is the first clinical guideline by NICE to focus on autism in adults. It aims to help improve the care of adults with autism and contribute to achieving the aims of the first ever autism strategy for adults in England launched in 2010¹.

“NICE has also developed a clinical guideline on diagnosing children and young people with autism and will publish a new guideline on the management of the condition in this age group next year.”

Professor Stephen Pilling, Director of the National Collaborating Centre for Mental Health, which developed the clinical guideline on NICE's behalf said: “Autism can affect adults in many different ways which means the condition can often be overlooked by healthcare, education and social care professionals.

“The new NICE guideline clearly identifies the most common, recognisable characteristics that could suggest an individual has autism. These include having difficulties with speech and communicating with other people, and having problems obtaining or sustaining employment or education. A positive diagnosis of autism can minimise feelings of isolation and confusion by helping adults to understand their behaviour more and to access employment advice and other support services they need.

“We hope that this advice will inspire greater confidence and awareness among healthcare professionals, and allow more adults with autism to have their individual needs recognised and receive the support they need.”

In addition, NICE advises that every adult with autism who does not have a learning disability or who has a mild one should be offered an individualised support programme if they are having difficulty obtaining or maintaining employment. This programme should include:

• Help with writing CVs and job applications and preparing for interviews
• Training for the identified work role and work-related behaviours
• Carefully matching the person with autism with the job
• Advice to employers about making reasonable adjustments to the workplace. Continuing support for the person after they start work
• Support for the employer before and after the person starts work, including autism awareness training.

Richard Mills, Director of Research at the National Autistic Society and guideline developer said: “While there are estimated to be around 332,600 people of working age in the UK with some form of autism, only 6% of them have a full-time paid job. It is encouraging that the NICE guideline highlights employment advice as a particular need as so many adults with autism are able and keen to work and can bring many skills and qualities to potential employers.”

Professor Simon Baron-Cohen, Director of the Autism Research Centre at the University of Cambridge and Chair of the Guideline Development Group said: “The way that autism is expressed depends on many factors, such as co-existing conditions or changes in circumstances. This often means that autism is often overlooked or misdiagnosed, which can lead to secondary depression and anxiety.

“Levels of understanding and the availability of services also currently vary greatly across the country. We hope that these new recommendations will help healthcare professionals to accurately diagnose autism and provide the appropriate treatment and support for each individual.”

Ends

Notes to Editors

Footnotes

1. Fulfilling and rewarding lives: the strategy for adults with autism in England - http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369

About the clinical guideline

2. For further information about NICE's clinical guideline on “Autism: recognition, referral, diagnosis and management of adults on the autism spectrum”, visit: www.nice.org.uk/CG142. Embargoed copies are available on request from the NICE press office.

About autism

3. Autism is a condition that affects brain development. Although autism affects people in different ways, the main symptoms are:

• finding it hard to deal with social situations, such as understanding other people's emotions, expressing one's own feelings and thoughts, and maintaining eye contact; some people with autism may prefer to be on their own
• having difficulties with speech and communicating with other people, responding to their facial expressions or tone of voice, and understanding common sayings; some people with autism may have limited speech or prefer to communicate with sign language
• having narrow interests or obsessions, repeating routines or movements (such as rocking) or finding it hard to prepare for change or plan for the future
• being under- or over-sensitive to sound, light, colour, smell and taste (called sensory sensitivity).

4. Approximately 70% of individuals with ASC also meet diagnostic criteria for at least one other (often unrecognised) psychiatric disorder that is further impairing their psychosocial functioning

About NICE

1. The National Institute for Health and Care Excellence (NICE) is the independent organisation responsible for providing national guidance and standards on the promotion of good health and the prevention and treatment of ill health

2. NICE produces guidance in three areas of health:

• public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
• health technologies - guidance on the use of new and existing medicines, treatments, medical technologies (including devices and diagnostics) and procedures within the NHS
• clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS

3. NICE produces standards for patient care:

• quality standards - these reflect the very best in high quality patient care, to help healthcare practitioners and commissioners of care deliver excellent services
• Quality and Outcomes Framework - NICE develops the clinical and health improvement indicators in the QOF, the Department of Health scheme which rewards GPs for how well they care for patients

4. NICE provides advice and support on putting NICE guidance and standards into practice through its implementation programme, and it collates and accredits high quality health guidance, research and information to help health professionals deliver the best patient care through NHS Evidence.