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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.

Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally.

Accessing adult autism diagnostic pathways can be difficult. This study explored perspectives of UK autistic adults, relatives and clinicians regarding the characteristics of optimal adult autism assessment and diagnostic services. In stage 1, three key stakeholder groups were surveyed about experiences of adult autism diagnostic services (pre-assessment/assessment): 343 autistic adults, 45 relatives and 35 clinicians completed parallel surveys. Information from stage 1 surveys was used to devise statements for a modified Delphi process in stage 2 seeking consensus among clinicians on optimal diagnostic service characteristics. Data analyses were non-parametric and descriptive. Over half of adults were in contact with mental health services prior to autism diagnosis. Clinicians reported that multidisciplinary diagnostic teams lacked key professionals. Thirteen statements describing optimal autism diagnostic service provision were developed. There was consensus from clinicians on 11 statements relating to clear assessment pathways, updates for people while waiting, pre-assessment information gathering/provision, co-occurring condition identification and training/networking. Some autistic adults, relatives and clinicians were positive about services, all stakeholders identified improvements were needed. The findings describing optimal service provision are relevant for UK clinicians, managers and commissioners to improve diagnostic assessments for autistic adults, and have international relevance for similar health systems.

Distress caused by sensory processing differences for autistic individuals may be reduced by repetitive behaviours (RRB), including repetitive motor (RMB) and insistence on sameness (ISB) behaviours. Intolerance of uncertainty (IU) and anxiety mediate the relationship between sensory processing and RRB in autistic children. We replicated this model in autistic adults, extending it to include alexithymia. Serial mediation, using data from 426 autistic adults, identified significant direct effects from sensory processing to RMB and ISB, and indirect effects through alexithymia-IU-anxiety for RMB, and IU alone, and alexithymia-IU for ISB. Different mechanisms may underpin RMB and ISB. Alexithymia alongside, IU and anxiety, should be considered when understanding the relationship between sensory processing and RRB, and when offering interventions to support autistic people.

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.

Low-intensity cognitive behaviour therapy including behavioural activation is an evidence-based treatment for depression, a condition frequently co-occurring with autism. The feasibility of adapting low-intensity cognitive behaviour therapy for depression to meet the needs of autistic adults via a randomised controlled trial was investigated. The adapted intervention (guided self-help) comprised materials for nine individual sessions with a low-intensity psychological therapist. Autistic adults (n = 70) with depression (Patient Health Questionnaire-9 score ?10) recruited from National Health Service adult autism services and research cohorts were randomly allocated to guided self-help or treatment as usual. Outcomes at 10-, 16- and 24-weeks post-randomisation were blind to treatment group. Rates of retention in the study differed by treatment group with more participants attending follow-up in the guided self-help group than treatment as usual. The adapted intervention was well-received, 86% (n = 30/35) of participants attended the pre-defined 'dose' of five sessions of treatment and 71% (25/35) attended all treatment sessions. The findings of this pilot randomised controlled trial indicate that low-intensity cognitive behaviour therapy informed by behavioural activation can be successfully adapted to meet the needs of autistic people. Evaluation of the effectiveness of this intervention in a full scale randomised controlled trial is now warranted.

Background: This article describes the development and use of the Formulation Understanding Measure to evaluate team formulation with staff supporting people with intellectual disabilities. Method: A quantitative design with an opportunistic sample was used to evaluate the psychometric properties of the Formulation Understanding Measure (FUM) including pre- and post-administration at case formulation workshops. The measure was developed based upon experience of delivering case formulation workshops and was administered alongside case formulation workshops with 347 staff team members. Results: The measure was found to have acceptable psychometric properties with good internal reliability, a single principal component, and associations with training and demographic factors. It was also sensitive to changes resulting from case formulation workshops with the measure showing that staff increased in their understanding of the person with intellectual disability following a formulation workshop. Conclusions: The FUM will enable routine evaluation of team formulations and further studies in the area.

Autistic people are more likely to: be diagnosed with a range of physical health conditions (i.e. cardio-vascular disease); experience premature mortality (for most disease categories); and experience barriers to effectively accessing healthcare. This systematic review sought to identify studies that report on barriers and facilitators to physical healthcare access for autistic people. A total of 3111 records were screened and six studies were included: two quantitative, two qualitative, and two mixed-methodology studies. Patient-provider communication, sensory sensitivities, and executive functioning/planning issues emerged as important barriers to healthcare. Recommendations for clinicians and those planning services are discussed.

Accurately diagnosing autism spectrum disorders in adulthood can be challenging. Structured questionnaires and diagnostic measures are frequently used to assist case recognition and diagnosis. This study reviewed research evidence on structured questionnaires and diagnostic measures published since the National Institute for Health and Care Excellence evidence update. The Cochrane library, Medline, Embase and PsycINFO were searched. In all, 20 studies met inclusion criteria. Sensitivity and specificity of structured questionnaires were best for individuals with previously confirmed autism spectrum disorder diagnoses and reduced in participants referred for diagnostic assessments, with discrimination of autism spectrum disorder from mental health conditions especially limited. For adults with intellectual disability, diagnostic accuracy increased when a combination of structured questionnaires were used. Evidence suggests some utility of diagnostic measures in identifying autism spectrum disorder among clinic referrals, although specificity for diagnosis was relatively low. In mental health settings, the use of a single structured questionnaire is unlikely to accurately identify adults without autism spectrum disorder or differentiate autism spectrum disorder from mental health conditions. This is important as adults seeking an autism spectrum disorder diagnostic assessment are likely to have co-existing mental health conditions. Robust autism spectrum disorder assessment tools specifically for use in adult diagnostic health services in the presence of co-occurring mental health and neurodevelopmental disorders are a research priority.

Introduction: Current research findings in the field of intellectual disabilities (ID) regarding the relationship between mental health problems and challenging behavior are inconclusive and/or contradictory. The aim of this study was to further investigate the putative association between these two highly prevalent phenomena in people with ID, and specifically to explore the hypothesis that challenging behaviors may be behavioral equivalents of mental health problems. Methods: A sample of 160 adults accessing secondary care ID health services was assessed using five validated measures. These included ratings of severity of disability, mental health problems, autism behaviors, physical health problems, and four different aspects of challenging behavior. In conjunction with demographic information, four multiple regression analyses were undertaken to examine the interaction between mental health problems (moderated by severity of disability) and ratings of overall challenging behavior, aggression, self-injurious behavior, and stereotypy. In each case, age, gender, autism, and physical health problems were included as covariates. Results: There was a statistically significant association between mental health problems and ratings of overall challenging behavior, as well as the moderating effect of severity of disability. Importantly, the positive association between mental health problems and challenging behavior was only significant at more severe levels of disability. Conclusions: These findings support the "behavioral equivalents" hypothesis for mental health problems and challenging behaviors. However, further longitudinal research is required before this hypothesis can be considered unequivocally supported.

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.

The emotional responses to challenging behaviour of direct care staff who support people with intellectual disabilities is thought to be an important mediating factor within the stress experienced by staff and a potential maintaining factor in challenging behaviour. A brief workshop to improve direct care staff resilience was developed and initially evaluated using a measure of emotional reaction to challenging behaviour and a measure of burnout. It was found that negative emotional reactions to challenging behaviour significantly reduced following the workshop, but a measure of burnout did not. This may indicate the usefulness of this intervention with direct care staff in managing their emotional reactions to challenging behaviour. However, further development and evaluation of such interventions with direct care staff is required to explore ways of impacting upon burnout and managing the display of challenging behaviour.

Evidence is limited on the positive impact of staff training in challenging behavior of service users with ID; and the link between staff training and service user outcomes remains unclear. This review identified studies that investigate challenging behavior training for staff working with adults with ID within residential care settings to explore factors promoting transfer of training into practice. A mixed‐method review was adopted, and a systematic search identified 19 papers meeting the criteria for inclusion. The implicit themes involved in the transfer of training into practice were extracted from the literature and discussed in relation to: setting conditions; cognitive and emotional aspects; and organizational systems. As a first step toward moving forward with research in this relatively neglected area, key constructs were identified and a preliminary model of the transfer process proposed. Limitations of the review model were considered, and recommendations for future research discussed. [ABSTRACT FROM AUTHOR]