Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians.

LAY ABSTRACT: Research has identified types of support helpful to autistic people, for example, physical and mental health interventions, psycho-education, peer support, developing positive identities and affiliation with social groups. However, accessing suitable post-autism diagnosis support and services is extremely difficult. We asked autistic adults, relatives and clinicians about their experiences of receiving and delivering post-autism diagnosis support/services. In Stage 1, 343 autistic adults and 45 relatives completed a survey. They answered questions about their experiences of UK autism post-diagnosis support/services for adults within 12 months after receiving a diagnosis. Thirty-five clinicians completed a similar survey. Just over half of adults and relatives said there was a follow-up appointment or discussion about support after diagnosis. Fewer than 40% received any support/services in 12 months after diagnosis. We used information from the surveys to create 11 statements describing characteristics of appropriate adult post-autism diagnosis support/services. In Stage 2, we asked clinicians for their views on the statements - they agreed with all of them. For example, those adults are offered an additional follow-up meeting after diagnosis and have access to mental and physical health services. We shared results with autistic adults, relatives and clinicians at two events. Some autistic adults, relatives and clinicians were positive about post-autism diagnosis support/services. However, they described many areas for improvement. The study findings can be used to define, develop and improve the types of adult post-diagnosis support services.

Telehealth Autism Diagnostic Assessments With Children, Young People, and Adults: Qualitative Interview Study With England-Wide Multidisciplinary Health Professionals.

BACKGROUND: Autism spectrum disorder (hereafter, autism) is a common neurodevelopmental condition. Core traits can range from subtle to severe and fluctuate depending on context. Individuals can present for diagnostic assessments during childhood or adulthood. However, waiting times for assessment are typically lengthy, and many individuals wait months or even years to be seen. Traditionally, there has been a lack of standardization between services regarding how many and which multidisciplinary health professionals are involved in the assessment and the methods (diagnostic tools) that are used. The COVID-19 pandemic has affected routine service provision because of stay-at-home mandates and social distancing guidelines. Autism diagnostic services have had to adapt, such as by switching from conducting assessments in person to doing these fully via telehealth (defined as the use of remote technologies for the provision of health care) or using blended in-person or telehealth methods. OBJECTIVE: This study explored health professionals' experiences of and perspectives about conducting telehealth autism diagnostic assessments, including barriers and facilitators to this, during the COVID-19 pandemic; potential telehealth training and supervision needs of health professionals; how the quality and effectiveness of telehealth autism diagnostic services can be enhanced; and experiences of delivering postdiagnostic support remotely. METHODS: A total of 45 health professionals, working in varied settings across England, participated in one-off, in-depth semistructured qualitative interviews. These were conducted via videoconferencing or telephone. Altogether, participants represented 7 professional disciplines (psychiatry, medicine, psychology, speech and language therapy, occupational therapy, nursing, and social work). The data were then analyzed thematically. RESULTS: Thematic analysis indicated the following 7 themes: practicalities of telehealth, telehealth autism diagnostic assessments, diagnostic conclusions, clinical considerations, postdiagnostic support, future ways of working, and health professionals' experiences and needs. Overall, telehealth autism diagnostic assessments were deemed by many participants to be convenient, flexible, and efficient for some patients, families, and health professionals. However, not all patients could be assessed in this way, for example, because of digital poverty, complex clinical presentation, or concerns about risk and safeguarding. Working remotely encouraged innovation, including the development of novel assessment measures. However, some participants expressed significant concerns about the validity and reliability of remotely assessing social communication conditions. CONCLUSIONS: A shift to telehealth meant that autism diagnostic services remained operational during the COVID-19 pandemic. However, this method of working has potentially affected the parity of service, with people presenting with clinical complexity having to potentially wait longer to be seen or given a diagnostic opinion. There is also a lack of standardization in the provision of services. Further research should identify evidence-based ways of enhancing the timeliness, accessibility, and robustness of the autism diagnostic pathway, as well as the validity and reliability of telehealth methods.

Autism Diagnostic Assessments With Children, Adolescents, and Adults Prior to and During the COVID-19 Pandemic: A Cross-Sectional Survey of Professionals.

Background: Access to timely high quality autism diagnostic assessments has traditionally been patchy; many individuals wait months, if not years, for an appointment. The onset of the COVID-19 pandemic has likely impacted autism diagnostic services. This study investigated professionals' experiences of, and thoughts about: (1) how autism diagnostic assessments were conducted before the pandemic; (2) adaptations to service provision because of the pandemic; and (3) challenges, risks, advantages and opportunities associated with autism assessments conducted via online platforms (telehealth). Method: Fifty-two professionals, based in different autism diagnostic services and working with children, adolescents and/or adults, completed an online cross-sectional survey in August and September 2020. This comprised demographic questions (about professionals' roles and experiences), and closed and open questions about service provision and telehealth autism assessments. Results: There was substantial variation in how autism assessments were conducted prior to and during the pandemic; for example, in relation to the number of professionals involved in the assessment and types of structured, semi-structured and unstructured measures used to conduct this. Fifty-two percent of participants (n = 27) reported some service disruption (e.g., full closure, substantial reduction in provision, and/or pausing of in person appointments). Waiting times for assessment had become longer for 58% of services (n = 30), due to pandemic-related disruption. Six themes emerged from thematic analysis of open responses: (1) the autism diagnostic pathway, pre-pandemic; (2) initial impact of the pandemic on service delivery; (3) conducting autism assessments during the pandemic; (4) working remotely; (5) improving service design and delivery; and (6) post-diagnostic support. Views about the accessibility, validity, and reliability of conducting telehealth autism assessments were polarized. Some participants considered this efficient, flexible, and adequate; others viewed this as unethical and inappropriate. What constitutes good practice in telehealth autism assessments remains unclear, but there is a general openness to using this method (potentially in a hybrid telehealth-in person model), provided rigor and standardization are enhanced. Conclusions: The pandemic has potentially compounded existing bottlenecks to the autism diagnostic pathway. Future research should seek to improve timeliness, standardization, accessibility and robustness of this pathway, and the validity and reliability of telehealth autism assessments.

A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults.

LAY ABSTRACT: Living with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people's experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide.

Development and Initial Utility of the Autism Clinical Interview for Adults: A New Adult Autism Diagnostic Measure.

Background: Clinicians use diagnostic interviews to help them gather and organize information collected in the assessment of autism. Most instruments are developed for children and few measures have been developed that are reliable, valid, and appropriate for use in adulthood. This is a significant barrier to providing a high-quality, timely service for adults. The aim of this development study was to assess the initial utility of the recently developed Autism Clinical Interview for Adults (ACIA) for use in autism diagnostic clinical services before further large-scale testing and evaluation. Methods: We invited adults who had received an autism spectrum diagnosis through a U.K. National Health Service (NHS) multidisciplinary adult autism assessment to participate. Seventeen autistic adults (8 women and 9 men, mean age of 37 years) and four relatives agreed to an interview. The semistructured ACIA interview comprises subject and informant versions, and a self-report preinterview questionnaire. In combination, the ACIA components cover topics relevant to autism and co-occurring condition assessment. We evaluated clinical utility and content validity via comparison with the Diagnostic and Statistical Manual Fifth Edition (DSM-5) and NHS diagnostic reports. Results: Each interview took between 60 and 90 minutes to complete. Comparison with DSM-5 and the NHS autism diagnostic report demonstrated that the ACIA accurately identified information on core autism characteristics needed for a diagnosis, and identified co-occurring conditions. In response to participant suggestions we revised the interview. Conclusions: These initial findings support the potential utility and validity of the ACIA for adult autism diagnostic clinical services. Further investigations of the acceptability, utility, and validity of this interview are planned. Lay summary: Why was this study done?: Clinicians use diagnostic interviews during assessments to help gather and record information both from a person suspected to be on the autism spectrum and from an informant (someone who knows them well). However, most autism diagnostic interviews were originally developed for assessing autism in childhood, and few have been developed for use with adults. The lack of diagnostic interviews developed specifically for use with adults makes it difficult to provide a good-quality, consistent assessment.What was the purpose of this study?: The study tested a new semistructured diagnostic interview called the Autism Clinical Interview for Adults (ACIA). The ACIA includes a questionnaire for people to complete before their interview. This is followed by an interview that can be conducted with the person themselves and a separate version to be used with someone who knows them well (if permitted). The interview covers autism traits, strengths and difficulties, and co-occurring physical and mental health conditions. We wanted to find out if the interview is useful for autism diagnostic services by comparing information collected using the ACIA with clinical diagnostic reports.What did the researchers do?: We invited people who had received a diagnosis of autism from a U.K. National Health Service (NHS) assessment to take part in an interview. We asked them if we could also interview someone who knew them well, and if we could compare their NHS autism diagnostic report with information gathered using the ACIA.What were the results of the study?: Seventeen autistic adults (average age 37 years; 8 women and 9 men) and 4 relatives/supporters (2 parents, a spouse, and a cohabiting partner) agreed to be interviewed. Each interview took 60 to 90 minutes to complete. A comparison with clinical reports showed the ACIA identified autism traits relevant for a diagnosis, as well as co-occurring conditions (e.g., depression). Participants suggested some ways to improve the interview, and revisions were made.What do these findings add to what is already known?: There are few diagnostic interviews designed specifically for use with adults seeking a diagnosis of autism. The findings from this study show that the ACIA is a promising new interview.What are the potential weaknesses of the study?: The study is small. However, it is important to run an initial test study before involving more people and resources in larger studies. Building on these results, we aim to undertake further studies on the acceptability and usefulness of the new interview with a larger number of people, including people from a range of backgrounds.How will these findings help autistic people now or in the future?: The ACIA has potential for use in adult autism clinical assessment services and as a resource for research and training. The semistructured format helps gather important and relevant information, and the interview length supports feasibility in clinical and research settings. The ACIA has the potential to streamline autism assessments and speed up the process for adults who currently wait a long time for their diagnosis.

The feasibility of low-intensity psychological therapy for depression co-occurring with autism in adults: The Autism Depression Trial (ADEPT) - a pilot randomised controlled trial.

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.

Guided self-help for depression in autistic adults: the ADEPT feasibility RCT.

BACKGROUND: Co-occurring depression frequently occurs in autism. Evidence-based psychological interventions have been successfully adapted to treat co-occurring anxiety, but there is little evidence about the usefulness of adapted cognitive-behavioural therapy for depression. To the authors' knowledge, to date there have been no randomised trials investigating the usefulness of low-intensity cognitive-behavioural therapy for depression in autism. OBJECTIVES: The objectives of the study were to (1) develop a low-intensity psychological intervention for depression adapted for autism, (2) assess the feasibility and patient and therapist acceptability of the intervention, (3) estimate the rates of recruitment and retention for a full-scale randomised controlled trial and (4) identify an appropriate measure of depression to be used in a full-scale randomised controlled trial. DESIGN: The study comprised a randomised controlled trial (n = 70) with a nested qualitative evaluation (n = 21). Seventy eligible and consenting participants were randomly allocated to guided self-help or to treatment as usual. SETTING: Adult autism services in two NHS regions. PARTICIPANTS: Adults with a diagnosis of autism spectrum disorder with depression, that is, a Patient Health Questionnaire-9 items score of ≥ 10. People who had attended more than six sessions of cognitive-behavioural therapy in the previous 6 months were excluded. INTERVENTIONS: The low-intensity intervention (guided self-help) comprised materials for nine individual sessions, based on behavioural activation adapted for autism, facilitated by therapist guides (coaches) who were graduate-level psychologists who attended training and regular supervision. Treatment as usual was standard NHS care for depression. MAIN OUTCOME MEASURES: Outcomes were measured 10, 16 and 24 weeks post randomisation using self-report and interview measures of depression, anxiety, obsessive-compulsive symptoms, social function and quality of life, and a health-care and service use questionnaire. As this was a feasibility study also designed to identify the most appropriate measure of depression, it was not possible to specify the primary outcome measure or outcome point a priori. RESULTS: The aims of the study were met in full. The guided self-help intervention was feasible and well received by participants and coaches. The majority of allocated participants attended the intervention in full. The most practical outcome point was determined to be 16 weeks. There were differential rates of attrition across the treatment groups: 86% of the guided self-help group remained in the study at 24 weeks, compared with 54% of treatment as usual group. The qualitative study suggested that guided self-help had enhanced credibility with participants at the point of randomisation. Inter-rater reliability of the interview measure of depression was less than adequate, limiting the conclusions that can be drawn from the prespecified sensitivity to change analyses. CONCLUSIONS: The intervention was feasible and well received. Although this feasibility study was not a fully powered trial, it provided some evidence that the guided self-help intervention was effective in reducing depressive symptoms. A full-scale clinical effectiveness and cost-effectiveness trial of the intervention is warranted. FUTURE WORK: Improvements to the intervention materials as a result of qualitative interviews. Stakeholder consultation to consider future trial design, consider strategies to improve retention in a treatment as usual arm and select a self-report measure of depression to serve as the primary outcome measure. TRIAL REGISTRATION: Current Controlled Trials ISRCTN54650760. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 23, No. 68. See the NIHR Journals Library website for further project information. This study was also supported by the NIHR Biomedical Research Centre at the University Hospitals Bristol NHS Foundation Trust and the University of Bristol.

The National Institute for Health Research commissioned research to investigate whether or not NHS psychological treatment for depression could be adapted for autistic people. Psychological treatment for anxiety can be helpful for autistic people if it is adapted to meet their needs, but there has been less research into such treatment for depression. We developed a treatment called guided self-help, which comprised materials for nine individual sessions and a manual to help the therapist guides work alongside autistic people. Two autistic people helped us to improve the session materials we had developed. The guides attended 2 days of training on how to deliver guided self-help. Seventy adults with a diagnosis of autism spectrum disorder and depression agreed to take part in the study. They were randomly allocated to guided self-help or to treatment as usual. Treatment as usual means whatever treatment would usually be available. We asked these adults to complete measures of depression, anxiety and other psychological symptoms, as well as their use of health and social care services, before treatment. We asked them to complete these measures again 10, 16 and 24 weeks later. We also invited them to take part in interviews about their experiences of the study. People who had guided self-help attended the treatment to the end and said that they found it acceptable and helpful. They suggested ways to improve the treatment materials. More people in the guided self-help group than in the treatment-as-usual group completed the 16- and 24-week follow-ups. Just over half of the people in the treatment-as-usual group did not attend the 16- and 24-week follow-ups. This would be a problem in a larger trial because we would not have enough information about the treatment-as-usual group to know if people in this group were doing better or worse than those in the guided self-help group. The findings of this study suggest that a larger trial to find out if guided self-help is effective in treating depression in autism would be helpful.

Protocol for a feasibility study and randomised pilot trial of a low-intensity psychological intervention for depression in adults with autism: the Autism Depression Trial (ADEPT).

INTRODUCTION: High rates of co-occurring depression are reported in autism spectrum disorder (ASD), a neurodevelopmental condition characterised by social communication impairments and repetitive behaviours. Cognitive-behavioural interventions adapted for ASD have been effective for anxiety problems. There have been evaluation studies of group cognitive-behavioural therapy for co-occurring depression, but no randomised trials investigating low-intensity psychological interventions as recommended in clinical guidelines for mild-moderate depression. METHODS AND ANALYSIS: A feasibility study comprising a randomised controlled trial (RCT) and nested qualitative evaluation is under way as preparation for a definitive RCT. Participants (n=70) will be randomised to Guided Self-Help: a low-intensity psychological intervention based on behavioural activation adapted for ASD or treatment as usual. Outcomes including depression symptoms, anxiety, social function and service use will be measured at 10, 16 and 24 weeks postrandomisation and will be blind to group allocation for measures that are not self-administered. The analysis will aim to establish the rates of recruitment and retention for a larger-scale RCT as well as the most appropriate measure of depression to serve as primary outcome. The qualitative study will purposively sample up to 24 participants from each treatment group to consider the acceptability and feasibility of the intervention and the trial design. ETHICS AND DISSEMINATION: Ethical approval has been received from WALES REC 3 (IRAS project ID: 191558) and the Health Research Authority with R&D approval from Avon and Wiltshire Mental Health Partnership and Northumberland, Tyne and Wear Foundation NHS Trusts. To our knowledge, this is the first study of a low-intensity intervention for depression in adults with autism. The results will inform the design of a definitive RCT. Dissemination will include peer-reviewed journal publications reporting the quantitative and qualitative research findings of the study and presentations at national and international conferences. TRIAL REGISTRATION NUMBER: ISRCTN54650760; Pre-results.

The effects of focus of attention on attributional bias in patients experiencing auditory hallucinations.

Cognitive models suggest that auditory hallucinations occur as the result of internal events attributed to an external source. The present study represents an attempt to evaluate the source monitoring performance of people who experience auditory hallucinations, specifically in terms of the suggested links between source monitoring, emotionality of stimuli and self-focused attention. The source monitoring performance of a group of 30 patients with a diagnosis of a schizophrenia spectrum disorder who experience auditory hallucinations was compared following successful experimental manipulation of their attention, designed to increase and decrease their levels of self-focused attention. The inclusion of words previously rated as emotionally salient by schizophrenic patients assessed the effect of emotionality on source monitoring performance. This study demonstrated that participants' ratings of both internality and control of their responses to the word association task were lower in the external focus condition than the internal focus condition. Furthermore, it was found that ratings of internality and control were lower for responses to both positive and negative stimuli compared to responses to neutral stimuli, and the magnitude of these differences was amplified in the internal focus condition relative to the external focus condition. Focus of attention has a significant effect on source monitoring performance in people experiencing auditory hallucinations. The theoretical and clinical implications of these findings are discussed.