Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members - autistic people, parents and their broader support network - about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were 'autism' and 'on the autism spectrum', and to a lesser extent, 'autism spectrum disorder', for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term 'autistic' was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; 'person with autism' was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents' preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK's autism community and that some disagreements appear deeply entrenched.

Background: In the UK, the general practitioner (GP) plays a key role in the identification and

BackgroundAutistic people are at increased risk of developing mental health problems. To reduce the negative impact of living with autism in a non-autistic world, efforts to improve take-up and access to care, and support in early years, which will typically start with a GP appointment, must be grounded in the accounts of autistic young adults.AimTo explore how autistic young adults understand and manage mental health problems; and to consider help seeking as a focus.Design and settingA cross-sectional, qualitative study. Autistic participants were purposively selected to represent a range of mental health conditions including anxiety and depression. A subsample were recruited from a population cohort screened for autism in childhood. The study concerns access to primary care.MethodNineteen autistic young adults without learning disabilities, aged 23 or 24 years, were recruited. In-depth, semi-structured interviews explored how they understood and managed mental health problems. Data were analysed thematically.ResultsYoung adults preferred self-management strategies. Multiple factors contributed to a focus on self-management, including: beliefs about the aetiology of mental health difficulties and increased vulnerability with the context of a diagnosis of autism, knowledge of self-management, and a view that formal support was unavailable or inadequate. Families had limited awareness of professional support.ConclusionYoung autistic adults without learning disabilities, and their families, may hold erroneous beliefs about autism and mental health. This may affect help seeking and contribute to an exacerbation of symptoms. GPs need to be alert to the fact that autistic young adults in their care may be experiencing mental health difficulties but may not recognise them as such.

A utism spectrum disorder (ASD) is a complex lifelong neurodevelopmental disorder that affects just over 1% of the UK population. This means that the average practice of 7000 patients will have about 70 patients with ASD. It can be very challenging for general practice to meet the health care needs of this population, but with some adjustments and increased awareness among staff, it is possible to improve access to health care. The GP curriculum and making your practice autism friendly Clinical module 2.03: The GP in the wider professional environment requires GPs to understand that:. Effective primary care requires the coordination and commitment of a multi-professional team working in partnership with patients Clinical module 2.02: Patient safety and quality of care requires GPs to recognise that:. Working in partnership with your patients and understanding their needs is vital to improving clinical care and reducing health inequalities. Patients, their families and carers have an important role in the assessment of health care: their views are therefore essential for the development of high-quality health care. Patients should be encouraged to be actively involved in planning their care and in the development of services at practice level and beyond Clinical module 3.11: Care of people with intellectual disability requires GPs to:. Recognise the importance of the principle of fairness and equality, irrespective of the innate abilities of each patient. Appreciate the role of your own patients in the evolution of services for patients with intellectual disability (and autism). All mainstream services should offer patients with intellectual disability (and autism) professional resources and facilities that are appropriate and tailored to their needs.

From 2014 to 2017 autism was championed by the Royal College of General Practitioners (RCGP). A suite of resources were developed to support GPs in their care of autistic patients. 1 Engagement on this topic allowed the RCGP and GPs to be represented in national policy and guideline development.The RCGP continues to promote proper care of autistic patients, their families, and carers. In its position statement on the subject in June 2016 2 it recognised the essential role general practice plays in caring for this community, their families, and carers. It committed to promoting evidence-based training on autism, and to sign-posting resources that enable equitable access by this group to primary health care.The Core Capabilities Framework for Supporting Autistic People 3 and Reasonable Adjustments 'flag' on patient records mark out some of the significant progress that has been made. Much remains to be done, and although sensitivities to the needs of autistic patients have improved, the experience and needs of autistic doctors have gone, largely, unrecognised. AUTISM PREVALENCE IN HEALTHCARE PRACTITIONERSRecent prevalence data indicates 1.1% of the UK population is autistic, 4 although this is widely held to be an underestimate. While we do not yet have prevalence rates for autistic doctors, 1% of GP responders surveyed on this topic by the RCGP clinical priority group 5 indicated that they were themselves autistic, so informing their care of autistic patients.Public awareness campaigns, 6 medical literature, 7 or the diagnosis of a family member are prompting a 'lost generation' of autistic healthcare professionals to recognise their autistic traits, 8 but it is

Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people. Lay abstract Autistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people’s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person’s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals.

A utism spectrum disorder is a complex lifelong neurodevelopmental disorder that affects 1.1% of the UK population. It is a social communication disorder that is characterised by rigid and repetitive routines or behaviours. It is also commonly associated with difficulties in cognition, behavioural flexibility, sensory processing, emotional regulation, and altered sensory sensitivity. The GP curriculum and autism in adults Clinical module 3.11: Care of people with intellectual disability requires GPs to:. Recognise that in every consultation you must make the effort to identify, monitor and review the progress of all patients who have difficulties with communication, social relationships and managing their own affairs. Be aware of the atypical morbidity and mortality prevalent in patients with intellectual disability (and autism) and the atypical presentation of acute and chronic physical and psychiatric disorders. Be aware of the additional skills of diagnosis and examination needed in patients unable to describe or verbalise symptoms and where to obtain specialist advice and help Clinical module 2.01: The GP consultation in practice requires GPs to understand that:. Clear, sensitive and effective communication with your patient and their advocate is essential for a successful consultation. Negotiating management plans with the patient involves balancing the patient's values and preferences with the best available evidence and relevant ethical and legal principles ! The Author(s) 2017. Reprints and permissions: sagepub.co.uk/journalsPermissions.nav

The clinical assessment and management of suicide risk depends primarily on face to face contact with the individual who presents the risk, and aims to predict behaviour in the very near future. Whether or not clinical intervention prevents suicide depends a great deal on the clinician's skill in reaching out to the individual patient. This poses a dilemma, because much of what has been written about predicting suicide has been based on averaged data concerning long-term outcome in large cohorts of patients.