Dr Carole Buckley explains the role of primary care in enabling individuals with suspected autism spectrum conditions to receive appropriate assessment and support
  • GPs need to be able to recognise the signs of autism
  • The AQ-10 test may be a useful assessment tool in primary care
  • Care should be person-centred and recognise the individual needs of the adult with autism
  • All key staff should receive autism-awareness training and understand the nature, development, and course of this disorder
  • Primary care practices need to make reasonable adjustments to enable adults with autism to access their services
  • Evidence for many popular interventions for autism is limited
  • The local autism multi-agency strategy group needs to develop effective pathways for the assessment and ongoing support of adults with autism
  • Challenging behaviour requires a comprehensive assessment and the GP has a role to play in excluding co-existing physical disorders and monitoring medication
  • Treatment of associated and co-existing conditions, such as epilepsy, anxiety, and depression, should follow existing NICE guidelines, but it should be recognised that autism may have an impact on the patient's response to treatment
  • Families, partners, and carers need to be identified (providing the person with autism agrees) so that they can receive adequate support in their role.

AQ-10=Autism-Spectrum Quotient-10 items


In June 2012, NICE published a new clinical guideline for the care of adults with autism spectrum disorders encompassing autism, Asperger's syndrome, and atypical autism (www.nice.org.uk/CG142).1 This follows on from an earlier NICE guideline on the recognition, referral, and diagnosis of children and young people with autism (www.nice.org.uk/CG128).2 The third and final chapter in autism guidance from NICE relates to the assessment and management of autism in children and young people, and is expected in 2014.

Need for the guideline

Autism spectrum disorders affect 1.1% of the population,3 and are a lifelong neurological condition characterised by difficulties in social interaction, communication, and strongly rigid or repetitive behaviour. They are also commonly associated with difficulties in cognition, behavioural flexibility, sensory processing, emotional regulation, and altered sensory sensitivity.

Adults with these conditions can be marginalised by society; they are often vulnerable individuals who in many circumstances receive poor-quality care. While a diagnosis of autism may be made in childhood, a significant number of adults with Asperger's syndrome or high functioning autism may not have their condition recognised until adulthood. There is wide variation in rates of identification and referral of autism across the UK, and:

  • 80% have difficulty obtaining a diagnosis in adulthood4
  • 44% have no intellectual disability5
  • 90% are unemployed.6

NICE Clinical Guideline (CG) 142 has been produced as part of an autism strategy in response to the Autism Act 2009 that committed the Government to publishing an adult autism strategy. This aims to improve the services available to adults with autism. 7 Primary care has an important role in this respect by:

  • enabling individuals with suspected autism to achieve appropriate assessment and support
  • helping adults with a diagnosis of autism to identify and access appropriate services
  • ensuring fair and equitable access of primary care services for all.

The NICE guideline development and review process involves comprehensive and systematic literature searches to identify relevant evidence for the clinical and economic reviews. When minimal evidence is available, the recommendations are based on the experience and opinions of the members of the Guideline Development Group as to what constitutes good practice.


Assessment and referral

All primary care practitioners must be in a position to recognise and refer adults with suspected autism. This will include individuals with, and those without, an intellectual disability as well as encompassing people with addiction problems and those identified by the criminal justice system, either as victims or offenders.1

NICE CG142 lists the main symptoms of autism that a primary care practitioner may see in clinical practice (see Box 1).1 It also recommends that the Autism-Spectrum Quotient-10 (AQ-10) item questionnaire8 is used as a screening tool for adults who do not have a moderate or severe learning disability. The AQ-10 can be read out if the person being assessed has difficulty reading.1

The local multi-agency autism strategy group is responsible for developing, managing, and evaluating local care pathways. Primary care should offer adults with autism access to community based multidisciplinary teams that are able to offer a range of services including:1

  • diagnosis and assessment
  • specialist care and provision of interventions
  • support for families, partners, and carers
  • a health passport that gives information about care and support needs.

In addition, primary care should provide advice and training to other healthcare professionals and develop a 24-hour crisis-management plan. This plan should provide advice to primary care practitioners on their responsibilities, and guidance on the appropriate management of adults in a crisis.1

Box 1: When to consider an individual for possible autism1

An assessment for possible autism should be considered when a person 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.

The role of primary care beyond referral

The Autism Act 2009 tasked the Government with producing a strategy for adults with autism and demanded statutory guidance for local authorities and local health boards.7 NICE CG142 states that all staff working in the NHS should receive autism-awareness training, and specialist training should be provided for staff in roles that have a direct impact on adults with autism.1

The guideline also calls for a person-centred approach and recognises that autism impacts on both the adult with the condition and those around them.1 All individuals involved in primary care need to ask themselves how easy it is for an adult with autism to access services and how well equipped is the practice to deliver effective care. These questions may include:

  • Have staff received autism-awareness training?
  • Are patients asked what reasonable adjustments are needed to accommodate them (e.g. the need for a quiet area to wait rather than in a crowded waiting room or the need for low-intensity lighting in the consulting room)?
  • Do reception staff recognise and embrace the special needs of individuals with autism (e.g. the need for the first appointment of the day to minimise exposure to crowds in the waiting room)?
  • Do GPs recognise the need to adjust consultations to meet the needs of those with autism (e.g. to take into account potential difficulties over physical contact)?
  • Is there an appreciation of the widespread under-reporting and under-recognition of physical disorders in adults with autism?
  • Is healthy living advice and support offered as part of the recognition of the unusual food likes and dislikes and lack of physical exercise in those with autism?
  • Is there sensitivity to the issues of sexuality in adults with autism?
  • Is there an appreciation of communication difficulties in autism, even in adults who are able to verbalise, which may lead to misunderstanding and possible exploitation by others?
  • Is there an awareness of local and national sources of information and support for people with autism?

Interventions for autism

NICE CG142 offers advice on interventions that are appropriate in autism, and specifically advises against a variety of these that have some popular support but little evidence of benefit.1 The interventions that are not recommended are listed in Box 2, and primary care clinicians would do well to resist pressure to offer these to their patients.1

A number of psychosocial interventions, training programmes, and structured support services are recommended (see Box 3).1 It is anticipated that a multidisciplinary community team would either offer these interventions or be able to direct individuals with autism towards these services. An assessment of challenging behaviour should be comprehensive and must evaluate all factors that may act as a trigger to the behaviour. This should include the physical environment, the social environment, co-existing mental or physical disorders, and communication problems. If no co-existing conditions or environmental issues are identified, a psychosocial intervention should be offered first.1 These should be based on behavioural principles and should be delivered by a healthcare professional with expertise in managing autism.

Antipsychotic medication should be considered in conjunction with behavioural interventions or alone if psychosocial or other interventions cannot be delivered because of the severity of the challenging behaviour. It is recommended that antipsychotic medication is prescribed by a specialist and that the prescription is reviewed regularly.1 Primary care practitioners have a role to play in diagnosing co-existing disorders, but the full support of the specialist team is needed to achieve a comprehensive assessment, and to provide advice on prescribing any antipsychotic medications if deemed necessary. When the primary care clinician conducts a medication review for an adult with autism they should always consider the appropriateness of continuing antipsychotic medication and include a complete and full assessment of the potential side-effects of this group of drugs.

Support for families, partners, and carers of individuals with autism is identified as essential throughout the guideline, but this can only be undertaken with the agreement of the person with autism.1 An assessment of the needs of the family and carers, as well as the provision of information should be regarded as key to the effective delivery of care to people with autism. Assistance can also be given by directing families and carers to local sources of help and support. Primary care has a role to play in this and can also help by identifying carers and recording this information in the healthcare records of those with autism.


Box 2: Interventions that should not be used for the management of the core symptoms of autism1
  • The following interventions are not recommended for the management of the core symptoms of autism:1
    • exclusion diets such as gluten- or casein-free and ketogenic diets
    • vitamin, mineral, and dietary supplements
    • chelation therapy
    • anticonvulsants unless treatment is needed for epilepsy, which is more common in autism and particularly in those with learning difficulties
    • hyperbaric oxygen
    • oxytocin
    • secretin
    • antipsychotics*
    • antidepressants unless these are to treat anxiety and depression, which are more common in people with autism (see www.nice.org.uk for NICE guidance)
    • testosterone regulation
    • drugs to improve cognitive function such as cholinesterase inhibitors
    • facilitated communication.

*There are recommendations on the use of antipsychotics in the management of challenging behaviour after comprehensive specialist assessment.

Box 3: Recommended interventions1

Recommended interventions include:

  • group-based or individual social-learning programmes
  • structured leisure activities
  • anger-management programmes
  • anti-victimisation interventions
  • individualised supported employment programmes.

Barriers to implementation

Primary care is likely to face a number of barriers when implementing NICE CG142, such as a lack of resources, the time needed to offer training to all key staff, and the identification of an appropriate training programme. There are also difficulties associated with making reasonable adjustments to the physical environment at the surgery. These are needed to allow equitable access for those with autism, but this may be particularly problematic if adjustments are needed to cater for sensory sensitivities. In addition, a local referral pathway and the support of a specialist multidisciplinary team may be lacking.

Within a primary care practice a first step in implementing the guideline would be to question all new patients when they register with the practice. These patients should be asked if any reasonable adjustments are needed to provide them with better access to the practice's services. In addition, information about these services should be clearly and unambiguously stated in any practice leaflets and on the website. A patient's special needs should also be flagged as an appropriate alert on primary care records.

Primary care practitioners should request that local education and training programmes include autism-awareness training as part of their regular offerings. Local commissioners also need to fulfil their legal obligation to provide an autism strategy group, which should meet regularly to assess the needs of this particularly vulnerable set of patients.


NICE implementation tools

NICE has developed the following tools to support implementation of Clinical Guideline 142 (CG142) on Autism: recognition, referral, diagnosis and management of adults on the autism spectrum. The tools are now available to download from the NICE website: www.nice.org.uk/CG142

NICE support for commissioners

Costing report Commissioning.eps

Costing reports are estimates of the national cost impact arising from implementation based on assumptions about current practice, and predictions of how it might change following implementation of the guideline.

NICE support for service improvement systems and audit

Baseline assessment tool Audit.eps

The baseline assessment is an Excel spreadsheet that can be used by organisations to identify if they are in line with practice recommended in NICE guidance and to help them plan activity that will help them meet the recommendations.

Clinical audit tools Audit.eps

Clinical audit tools are developed to help with clinical audit. They contain clinical audit standards, a data collection form, and an action plan template.

Electronic audit tools Audit.eps

Electronic audit tools are Excel spreadsheets developed to help with clinical audit. They contain audit standards, data collection sheets, a clinical audit report, and an action plan template.

NICE support for education and learning

AQ-10 test Education.eps

The autism spectrum quotient (AQ-10) tool is recommended for use with adults with possible autism who do not have a moderate or severe learning disability. This may help identify whether an individual should be referred for a comprehensive autism assessment.

Clinical case scenarios Education.eps

Clinical case scenarios are an educational resource designed to improve and assess users' knowledge of the guideline on autism in adults and its application in primary, secondary, and tertiary care.

Online learning resource Education.eps

The Autism in General Practice course enables GPs and the primary healthcare team to improve the care they and their practice provide for patients with autistic spectrum conditions.

Key to NICE implementation icons

 Commissioning.eps

NICE support for commissioners

  • Support package for commissioners and others for quality standards
  • NICE guide for commissioners
  • NICE cost impact support for guidance (selection from national report/local template/costing statement, dependent on topic)

 Audit.eps

NICE support for service improvement systems and audit

  • Forward planner
  • 'How to' guides (generic advice on processes)
  • Local government briefings (with Centre for Public Health Excellence)
  • Baseline assessment tool for guidance
  • Audit support including electronic data collection tools
  • E-learning modules (commissioned)

 Education.eps

NICE support for education and learning

  • Clinical case scenarios
  • Learning packages including slide sets
  • Podcasts
  • Shared learning and other local best practice examples

Conclusion

The NICE guideline is part of a wider autism strategy and offers a wide-ranging overview for the diagnosis, assessment, and management of adults with autism spectrum disorders, encompassing autism, Asperger's syndrome, and atypical autism. Implementing these recommendations is an important step in improving the care for a group of people who often have poor health and social outcomes. Primary care is ideally placed to play an important role in improving the care of adults with autism by bringing about this change. It is also essential in delivering services and acting as an advocate for this group of patients.


  • Knowledge and awareness of autism is variable among GPs and practice staff—CCGs and local specialist services should look to develop local autism-awareness training
  • Commissioners and local specialist providers should define and describe local pathways of care for patients with suspected autism and those who already have a confirmed diagnosis
  • CCGs should ensure that specialist autism services are accessible and available and that pathways are used to guide referrals to these services
  • CCGs and local providers could consider funding a specialist,
    community based health practitioner for autism to help educate and support practices in their care of patients with autism
  • Mental health services for autism currently lie outside the Payment by Results tariff but are likely to be included as part of a specialist Mental Heath tariff in 2014.

CCG=clinical commissioning group

  1. National Institute for Health and Care Excellence. Autism: recognition, referral, diagnosis and management of adults on the autism spectrum. Clinical Guideline 142. London: NICE, 2012. Available at: www.nice.org.uk/guidance/CG142 nhs_accreditation
  2. National Institute for Health and Care Excellence. Autism: recognition, referral and diagnosis of children and young people on the autism spectrum. Clinical Guideline 128. London: NICE, 2011. Available at: www.nice.org.uk/guidance/CG128 nhs_accreditation
  3. Brugha T, Cooper S, McManus S et al. Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 adult psychiatric morbidity survey. The NHS Information Centre for Health and Social Care, 2012.
  4. Taylor I, Marrable T. Access to social care for adults with autistic spectrum conditions. London: Social Care Institute for Excellence (SCIE) and University of Sussex, 2011. Available at: www.scie.org.uk/publications/guides/guide43/files/practicesurvey.pdf
  5. Baird G, Simonoff E, Pickles A et al. Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the special needs and autism project (SNAP). Lancet 2006; 368: 210–215.
  6. Barnard J, Harvey V, Potter D, Prior A. Ignored or ineligible? The reality for adults with autism spectrum disorders. National Autistic Society, 2001.
  7. Legislation.gov.uk website. Autism Act 2009. www.legislation.gov.uk/ukpga/2009/15/contents (accessed 5 October 2012).
  8. Allison C, Auyeung B, Baron-Cohen S. Towards brief 'red flags' for autism screening: the short autism spectrum quotient and the short quantitative checklist for autism in toddlers in 1000 cases and 3000 controls.
    J Am Acad Child Adolesc Psychiatry 2012; 51: 202–212. G