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Autism spectrum condition is associated with co-occurring physical health conditions and premature mortality. Autistic people experience multiple barriers to accessing healthcare. This study investigated autistic people's experiences of healthcare and professionals' experiences of providing healthcare to autistic people. Focus groups with 11 autistic people and one supporter, and 15 one-to-one interviews with healthcare professionals were completed. Nine themes emerged from the autistic participants' data and eight themes emerged from the health professionals' data. Three themes were identified by both groups: healthcare contacts (for improving the patient--provider relationship), making reasonable adjustments to healthcare (e.g. providing alternative places to wait for an appointment) and autism diagnosis. Autistic participants discussed the role of cognitive factors in the success of healthcare visits (such as rehearsing an anticipated conversation with the clinician the night before an appointment) and clinicians described system-level constraints that may affect healthcare delivery (such as time limits on appointments). This study identified inexpensive changes that health professionals and managers can make to improve healthcare access for autistic people.

Accurate measurement of quality of life (QoL) is important for evaluation of autism services and trials of interventions. We undertook psychometric validation of the World Health Organisation measure--WHOQoL-BREF, examined construct validity of the WHO Disabilities module and developed nine additional autism-specific items (ASQoL) from extensive consultation with the autism community. The sample of 309 autistic people was recruited from the Adult Autism Spectrum Cohort-UK. The WHOQoL-BREF had good psychometric properties, including criterion, convergent, divergent and discriminant validity. The WHO Disabilities module showed adequate construct validity and reliability. The ASQoL items form a unitary factor of QoL, with one global item. Future studies can use the WHO measures alongside the ASQoL items to measure QoL of autistic people.

Background: Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their experiences of assessing mental capacity for research; (ii) what methods they used to facilitate the inclusion of adults with intellectual disabilities and/or autism; and (iii) their views about a proposal to develop new resources to facilitate mental capacity judgements with adults with intellectual disabilities and/or autism for informed consent for research. Methods: Clinical researchers in North East England who conduct research with NHS patients with intellectual disabilities and/or autism were invited to participate in a 22-item self-completed semi-structured questionnaire survey, either online or on paper. Results: Twenty-one clinicians completed the survey (response rate 30.4%). Participants reported on 18 research studies which included people with intellectual disabilities and/or autism. In many studies people who lacked capacity to give informed consent were excluded, and often shortcuts were taken in judging capacity. Limited adaptations to support capacity were used. Respondents welcomed the proposal of developing assistive resources that could support capacity judgements and informed consent to research. Conclusions: To improve access to research for people with intellectual disabilities and/or autism, researchers need robust methods to facilitate informed consent and mental capacity judgements. Future research should determine which assistive resources show potential to support informed consent and capacity decisions, and whether such resources could improve inclusion in research.

Clinical initiatives have aimed to reduce the age at ASD diagnosis in the UK. This study investigated whether the median age at diagnosis in childhood has reduced in recent years, and identified the factors associated with earlier diagnosis in the UK. Data on 2,134 children with ASD came from two large family databases. Results showed that the age of ASD diagnosis has not decreased. The median age of diagnosis of all ASDs was 55 months. Factors associated with earlier age of diagnosis were autism diagnosis (compared with other ASD), language regression, language delay, lower socioeconomic status, and greater degree of support required. Effective clinical strategies are needed to identify children with characteristics that have in the past delayed ASD diagnosis.

The type, frequency and inter-relationships of emotional and behavioural problems in 863 children with autism spectrum disorder (ASD) were investigated using the population-based Database of children with ASD living in the North East of England (Daslne). A high rate of problems was reported, with 53% of children having 4 or more types of problems frequently. Sleep, toileting and eating problems, hyperactivity, self injury and sensory difficulties were greater in children with lower language level and in special schooling. However, anxiety, tantrums and aggression towards others were frequent regardless of age, ability or schooling. The frequency of co-existing conditions, including such emotional and behavioural problems, in children with ASD has implications for designing appropriate support services for children and families.