Care and support for people with autism must be improved, says NICE
The National Institute for Health and Care Excellence (NICE) has issued standards to improve the quality of care and support for children, young people and adults with autism.
The term autism describes differences and impairments in social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours, often with a lifelong impact. Autism is a spectrum disorder; the word 'spectrum' is used because the symptoms of Autism or Autism spectrum disorder (ASD as it is commonly known) can vary from person to person, and range from mild to severe. It is also common for people with ASD to have symptoms or aspects of other conditions such as:
- attention deficit hyperactivity disorder (ADHD),
- mental health problems such as depression and anxiety,
- comorbid medical problems, such as gastrointestinal disorders and epilepsy, or
- dyspraxia (developmental co-ordination disorder).
These problems can substantially affect a person's quality of life, and that of their families or carers, and lead to social vulnerability.
In England, it is estimated that 1 in every 100 people has an ASD, with the conditions more common in men than women. There is no 'cure' for autism, but a range of interventions and treatments, including methods of enabling learning and development, can help improve symptomsi.
The provision of services for people with autism is varied across England and the NICE quality standard is designed to standardise and improve the care and management of autism.
- There are several different routes by which someone with possible autism can be referred to an autism team for a diagnostic assessment. It is important that the assessment is conducted within three months of their referral, so that appropriate health and social care interventions, advice and support can be offered.
- Drug treatments have been shown to be ineffective in addressing the core features of autism. They also carry significant potential risks. People with autism should not be prescribed medication to address such features. Consideration should be given to whether psychosocial intervention would be beneficial to the person with autism.
- People with autism can sometimes present with behaviour that is challenging to manage. The causes of this type of behaviour can be multifactorial, and can involve physical health conditions, mental health problems and environmental factors (that is, relating to the person's social or physical environment). People with autism who develop these behavioural challenges should be assessed for possible triggersii.
Professor Gillian Leng, Deputy Chief Executive and Director of Health and Social Care at NICE said: "People with autism can find everyday life challenging and confusing, and often have symptoms or aspects of other conditions that go undiagnosed. This quality standard outlines how to deliver the very best care and support for both adults and children with the condition."
Jonathan Green, Professor of Child and Adolescent Psychiatry, University of Manchester and Manchester Academic Health Sciences Centre, and member of the committee which developed the standards said: "Across England, there is real variation in the type and quality of care people with autism receive, which can have lasting effects on both the person and their families/carers. It is important, therefore, that there are clear standards in place - based on the best available evidence and expert consensus - which specifically focus on key areas needing improvement. These will aid health and social care professionals and commissioning bodies to deliver the very best for people with autism."
Zoe Thompson, Head of Development, Bright Futures School, Oldham, and member of the committee which developed the standards said: "As a Mum to a teen with autism and the proprietor of a special school for children with autism, I know that it is often very difficult for people with autism and their families to access appropriate and timely services and support, and that provision of specialist services for both children/young people and adults with autism remains very patchy.
"The NICE quality standard for autism sets a benchmark for improved recognition, diagnosis and delivery of evidence-based support across the lifespan of a person with autism. I am particularly heartened that we were able to include a key statement on social communication interventions and I am hopeful that this will now be reflected in the commissioning of local services."
Treating Autism, the nation-wide UK charity providing support to families and individuals affected by autism, said: "There is an overwhelming common thread in the experiences of the hundreds of families served by our charity: when practitioners and parents overcome the challenges of identifying symptoms, and when coexisting medical problems are investigated thoroughly and treated appropriately, quality of life for their children with autism improves, sometimes enormously. Recent research confirms the high prevalence of medical comorbidities in people with ASD, and leaving these problems undiagnosed and untreated will further impair the person's psychosocial functioning, and will result in higher costs for everyone, physically, emotionally, and financially.
"We particularly welcome the call to investigate possible triggers - including coexisting physical disorders, such as pain or gastrointestinal disorders and environmental factors - for behaviours that challenge, as these behaviours have too often been dismissed as 'autism' or as mental health issues, rather than viewed as possible manifestations of underlying physical problems.
"The NICE quality standard for autism is an important step forward in addressing the reality of physical health conditions within autism and providing better care and better lives for people with this diagnosis."
Mark Lever, Chief Executive of The National Autistic Society, said: "With the right support at the right time, people with autism can live rewarding and fulfilling lives which is why we campaigned hard to secure this Quality Standard.
"The first step to getting the right support is having timely access to diagnosis so speeding up the process will have a significant impact on the lives of thousands of people with autism in England, many of whom have waited or are waiting, to obtain this critical milestone.
"The Standard recognises that people with autism can also have mental or physical health issues. Professionals need to understand that all of a person's issues need to be looked at when providing support and so services should rightly be judged on their ability to do just that.
"This Standard will also allow for services to be measured on how they respond and treat challenging behaviour and makes it clear that people with autism should not be prescribed medication to address the core features of the condition.
"People with autism have campaigned long and hard for their needs to be addressed when professionals are designing support and services; measuring progress against this Standard will help to ensure that this happens."
For more information, please call the NICE press office on 0845 003 7782 or out of hours on 07775 583 813, or email email@example.com
Notes to Editors
ii. NICE is currently producing a clinical guideline on the prevention and interventions for people with learning difficulties whose behaviour challenges. Details are available on the NICE website
About the quality standard
Embargoed copies are available on request; please contact the press office.
2. The NICE quality standard for autism is based on the following NICE accredited guidelines:
- Autism: The management and support of children and young people on the autism spectrum. NICE clinical guideline 170 (2013)
- Autism: recognition, referral, diagnosis and management of adults on the autism spectrum. NICE clinical guideline 142 (2012)
- Autism diagnosis in children and young people: Recognition, referral and diagnosis of children and young people on the autism spectrum. NICE clinical guideline 128 (2011)
- Improving access to social care for adults with autism. Social Care Institute for Excellence (2011)
3. NICE quality standards describe high-priority areas for quality improvement in a defined care or service area. They are derived either from NICE guidance or guidance from other sources that have been accredited by NICE, and apply right across the NHS in England.
Related NICE guidelines and quality standards
4. Patient experience in adult NHS services. NICE quality standard 15 (2012).
5. Service user experience in adult mental health. NICE quality standard 14 (2011).
6. Conduct disorders (children and young people). NICE quality standard. Publication expected May 2014.
Future quality standards
About NICE quality standards
NICE quality standards aim to help commissioners, health care professionals, social care and public health practitioners and service providers improve the quality of care that they deliver.
NICE quality standards are prioritised statements designed to drive measurable quality improvements within a particular area of health or care. There is an average of 6-8 statements in each quality standard.
Quality standards are derived from high quality evidence-based guidance, such as NICE guidance or guidance from NICE accredited sources, and are produced collaboratively with health care professionals, social care and public health practitioners, along with their partner organisations, patients, carers and service users.
NICE quality standards are not mandatory but they can be used for a wide range of purposes both locally and nationally. For example, patients and service users can use quality standards to help understand what high-quality care should include. Health care professionals and social care and public health practitioners can use quality standards to help deliver high quality care and treatment.
NICE quality standards are not requirements or targets, but the health and social care system is obliged to have regard to them in planning and delivering services, as part of a general duty to secure continuous improvement in quality.
Quality standard topics are formally referred to NICE by NHS England (an executive non-departmental public body, established in October 2012) for health-related areas, and by the Department of Health and Department for Education for areas such as social care and public health.
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for driving improvement and excellence in the health and social care system. We develop guidance, standards and information on high-quality health and social care. We also advise on ways to promote healthy living and prevent ill health.
Formerly the National Institute for Health and Clinical Excellence, our name changed on 1 April 2013 to reflect our new and additional responsibility to develop guidance and set quality standards for social care, as outlined in the Health and Social Care Act (2012).
Our aim is to help practitioners deliver the best possible care and give people the most effective treatments, which are based on the most up-to-date evidence and provide value for money, in order to reduce inequalities and variation.
Our products and resources are produced for the NHS, local authorities, care providers, charities, and anyone who has a responsibility for commissioning or providing healthcare, public health or social care services.
This page was last updated: 20 January 2014