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Mobile health (mHealth) screening tools for autism are gaining in prevalence, and have benefits such as video content and direct resources linkage. However, it is unclear whether such tools will ameliorate autism inequities or will help only those already advantaged in autism care. To investigate this issue, we conducted semi-structured qualitative interviews with 18 primary care and Early Intervention/Early Childhood Special Education providers in six US states. Providers were given hypothetical scenarios in which a family presents to care with results from one of 9 mHealth autism screening tools. Providers discussed their clinical approach and assessed the tool's fit with their patient/client population. Each transcript was audio-recorded, transcribed, and coded; a phenomenological approach was used to develop key themes. 4 themes and 18 subthemes emerged. These included Clinical and business factors (e.g. scope of practice concerns and clinical efficiency), Validity and trustworthiness (e.g. familiarity, data privacy/security), Family interaction quality (e.g. supporting family advocacy, provision of information, affecting family anxiety, and emotional support), and Accessibility (e.g. English proficiency/language issues, cultural inclusivity, and literacy/educational level). Providers suggested modifications to enhance equity, such as portraying diverse families, reducing the reading level of text, and making tools shorter to better fit clinical context. Families may find information about autism online, and health care and education providers may use online tools to screen for autism. However, we do not know if online autism screening tools are easily used by families and providers. We interviewed primary care and educational providers, asking them to review results from online tools that screen for autism. Providers had concerns about how usable and accessible these tools are for diverse families and suggested changes to make tools easier to use. [ABSTRACT FROM AUTHOR]

Few autistic adults perceive that health and social care professionals have good understanding of autism. The countywide Autism Champion Network evaluated here, is an equal partnership of both staff across sectors (Autism Champions) and individuals with lived experience. Autism Champions take knowledge gained back to their teams to support continuous development of services to meet autistic need. This evaluation aims to examine the professional Autism Champions' perceptions of (1) the knowledge gained through their local network and (2) the enablers and potential challenges of disseminating and applying the acquired knowledge. Seven health and social sector professionals participated in semi-structured interviews with thematic analysis identifying the themes 'Learning from People', 'Makes you think of things in a different light' and 'There's so much going on... '. Results indicated that knowledge of autism gained from networking outside their own team was used and valued more than the professional presentations. It included signposting, sharing resources, using contacts to answer questions, and informal learning from autistic people. These results have implications for developing learning for Tier 2 and above staff. In addition, they could inform the development of future Autism Champion Networks to expand professionals' knowledge of autism to reduce health and social care inequalities. The Autism Act 10 Years On found few autistic adults thought health and social care professionals had a good understanding of autism. Autism training has been made law in the United Kingdom for health and social care staff to tackle health inequality. The county wide Autism Champion Network evaluated here is an equal partnership of interested staff across sectors (Autism Champions) and autistic experts by virtue of lived experience (Autism Advisory Panel). With knowledge flowing both ways, the Autism Champions take learning back to teams to support continuous development of services to meet autistic need. Seven health and social sector professionals from the Network participated in semi-structured interviews on sharing knowledge of autism gained with their teams. All participants provide care and support for autistic people, some working in specialist positions. Results showed that developing new relationships with people outside their own team to signpost to, answer questions and share resources, and informal learning from autistic people, was more valued and used in practice than information gained from presentations. These results have implications in developing learning for those who need above a basic knowledge of autism and may be useful for others considering setting up an Autism Champion Network. [ABSTRACT FROM AUTHOR]

Clinical judgement is a crucial part of autism and attention deficit hyperactivity disorder (ADHD) assessments. This study aims to harness insights from psychology and sociology to explore clinical perspectives and assessment practices of autism and attention deficit hyperactivity disorder. Qualitative interviews were conducted with health care professionals (n = 17). Interviews were conducted between January and May 2019. Data were analysed using a thematic approach. Themes were sorted into two interrelated categories (1) approaches to diagnosis (2) elements of diagnosis. Approaches to diagnosis were comprised of the following subthemes: nature of diagnosis, application of diagnosis: natural and pragmatic, revisiting conceptualisations: sub-optimal practice & unhelpful diagnoses, autism and attention deficit hyperactivity disorder. Elements of diagnosis contained three related subthemes: contextualising standardised assessments, triangulating material, organisational factors. There is sometimes a pragmatic as well as nosological dimension to diagnosis. Competing desires for consistency and utility add further complexity to neurodevelopmental assessment. Autism and attention deficit hyperactivity disorder are common behaviourally diagnosed conditions. One of the key aspects of diagnosis is clinical judgement. Yet despite decades of research, it is only in recent times that researchers have started exploring clinicians' perspectives on diagnosing these conditions. We aimed to add to this body of knowledge by conducting interviews with 17 experienced health care professionals in the United Kingdom to hear their perspectives on diagnosing autism and attention deficit hyperactivity disorder. Clinicians reflected that for some children and young people, diagnosis is reasonably straightforward; however, in other situations, decisions are made on more pragmatic grounds (i.e. will this be helpful). We identified some differences of opinion between professionals and organisation which adds to the complexity of applying a diagnosis. We recommend several areas for future research and point to some practical and philosophical implications of the work. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic prompted a large-scale move to remote delivery of healthcare services. However, little research has directly explored telehealth experiences of autistic adults, a population strongly affected by health inequalities and care access barriers. This study sought telehealth experiences of 11 autistic adults (aged 27–67 years), seven family members/carers (aged 44–75) reporting about autistic people and six service providers. In-depth qualitative interviews were conducted with all participants, which were then thematically analysed. Two over-arching themes identified were technology aids communication and access – except when it doesn't, and in/flexibility, with a number of sub-themes. The themes, on one hand, highlighted positives of telehealth delivery, including easing some aspects of communication and decreased stress and, on the other hand, negatives, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Considering autistic people experience barriers to accessing healthcare, this study highlights such barriers could be, in some instances, addressed via remote delivery, as well as possible limitations of telehealth for some autistic adults. The COVID-19 pandemic meant that a lot of healthcare services had to move online, such as to video-calls, or to telephone. However, not many studies have looked at how autistic adults feel about this kind of service delivery. It is important to know this, as autistic people may have poorer health than non-autistic people, and they may also struggle to access services more than non-autistic people. This study asked 11 autistic adults (aged 27–67 years), seven family members/carers (aged 44–75) reporting about autistic adults and six service providers about their experiences of accessing or providing a telehealth service. These experiences were collected through interviews, which were then analysed through thematic analysis. Two main themes were: technology aids communication and access – except when it doesn't, and in/flexibility. The themes pointed out some positive aspects of telehealth delivery, including improved communication and decreased stress. The themes also pointed out negative aspects of telehealth, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Because autistic people have many barriers to accessing healthcare, this study encourages researchers and healthcare providers to think about how such barriers could be addressed through telehealth, and about the possible limitations of telehealth for some autistic people. [ABSTRACT FROM AUTHOR]

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. 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. [ABSTRACT FROM AUTHOR]

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. 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. [ABSTRACT FROM AUTHOR]

The objective of the study is to report the feasibility, acceptability, and adoption of the "Access to Tailored Autism Integrated Care (ATTAIN)," a model to identify mental health needs and link to mental health care for autistic children. The Exploration, Preparation, Implementation, and Sustainment framework informed implementation outcome measurement and analysis. Thirty-six providers from seven pediatric primary care clinics within three health care systems enrolled and received an initial Access to Tailored Autism Integrated Care training and ongoing online support over 4 months with autistic patients ages 4–16 years old. Survey and interview assessments measured perceptions of feasibility, acceptability, and intentions to sustain Access to Tailored Autism Integrated Care use. Electronic health record (EHR) data assessed child characteristics and Access to Tailored Autism Integrated Care adoption. Descriptive statistics and one-way analyses of variance characterized implementation outcomes and differences between health care systems. Rapid qualitative methods were used to analyze interview data that were integrated with survey data for convergence and expansion. Providers reported that Access to Tailored Autism Integrated Care was feasible, acceptable, and that the initial training was helpful. Reports were mixed about providers' intentions to continue using Access to Tailored Autism Integrated Care. Providers offered recommendations for more specific and tailored implementation support. There were significant differences in provider-reported adoption rates between health care systems. This is one of the first implementation studies examining integrated mental health care for autistic children and highlighted specific areas for refinement to facilitate scale-up. Children with autism frequently experience co-occurring mental health needs. The "Access to Tailored Autism Integrated Care (ATTAIN)" model was co-created with caregivers, pediatric providers, and health care leaders to identify mental health needs and link to mental health care for autistic children. This article describes outcomes from a pilot study of Access to Tailored Autism Integrated Care with 36 pediatric primary care providers from seven clinics within three healthcare systems. Providers participated in an initial Access to Tailored Autism Integrated Care training and received ongoing online support over 4 months with autistic patients ages 4–16 years old. Survey and interview assessments measured provider perceptions of feasibility, acceptability, and intentions to continue using Access to Tailored Autism Integrated Care after the pilot. Providers reported that Access to Tailored Autism Integrated Care was feasible, acceptable, that the initial training was helpful in their implementation but that more specific and tailored implementation support was needed. Results show that Access to Tailored Autism Integrated Care is a promising model to support mental health screening and linkage for children with autism in primary care. Findings provide information on specific areas of the Access to Tailored Autism Integrated Care model that could be benefit from additional refinement to support more widespread use in primary care settings. [ABSTRACT FROM AUTHOR]

Professionals who primarily deliver services to children on the autism spectrum employ a range of techniques and supports that are colloquially known as applied behavior analysis therapy. The landscape of evidence supporting interventions for children on the autism spectrum has vastly transformed in the last decade. A substantial, relatively high-quality literature base supports the effectiveness of Naturalistic Developmental Behavior Interventions for supporting development in children on the autism spectrum, yet few professionals serving this population receive training in this category of interventions. Board Certified Behavior Analysts and related professionals are the primary service providers for this population. The purpose of this survey study is to describe and understand the knowledge and beliefs that Behavior Analyst Certification Board certificants have around Naturalistic Developmental Behavior Interventions, and the implications for training the professionals most likely to serve young children on the autism spectrum. A total of 901 respondents completed the survey. Respondents indicated, on average, little to no knowledge of Naturalistic Developmental Behavior Intervention practices and that few believe these practices to be effective or appropriate for the field. We discuss the implications and needs for future training and research in this area. Primary service providers for young children on the autism spectrum and developmentally delayed children use many strategies under the umbrella of applied behavior analysis therapy. The evidence supporting interventions for children on the autism spectrum has changed last decade, and powerful research supports the relative effectiveness of Naturalistic Developmental Behavior Interventions, yet a few professionals serving young children on the autism spectrum receive training in this category of interventions. Board Certified Behavior Analysts and related professionals are the primary service providers for this population. The purpose of this survey study is to describe and understand the knowledge and beliefs that Behavior Analyst Certification Board certificants have around Naturalistic Developmental Behavior Interventions. The survey was completed by 901 respondents. Respondents indicated, on average, little to no knowledge of Naturalistic Developmental Behavior Intervention practices and few believe that these practices are effective or appropriate for the field. Recommendations include increasing training opportunities for related professionals, and changing certification requirements to match the current evidence. [ABSTRACT FROM AUTHOR]

Best-practice recommendations for young children at high likelihood of autism include active involvement of caregivers in intervention. However, the use of evidence-based parent-mediated interventions in community practice remains limited. Preliminary evidence suggests that Project ImPACT for Toddlers demonstrates positive parent and child outcomes in community settings. Project ImPACT for Toddlers was adapted specifically for toddlers and teaches parents of young children strategies to build their child's social, communication, and play skills in daily routines. This study reports implementation outcomes from the initial community rollout of Project ImPACT for Toddlers and examines the system-wide intervention reach, with the goal of informing continued community sustainment and scale-up. Participants include 38 community providers who participated in a Project ImPACT for Toddlers' training study who completed an implementation survey and semi-structured interviews after approximately 3 months of community implementation. Participants perceived the training model as acceptable and appropriate, and identified several strengths of the approach. Interview themes also supported the feasibility, acceptability, and utility of the intervention in community settings. Quantitative findings complemented the thematic results from interviews. Intervention reach data indicate an increasing number of agencies delivering and families receiving Project ImPACT for Toddlers. Efforts to scale-up evidence-based interventions in early intervention should continue to build upon the model of the Bond, Regulate, Interact, Develop, Guide, and Engage Collaborative. Expert recommendations for toddlers who are likely to develop autism include caregivers being actively involved in the services children receive. However, many services available in the community may not follow these recommendations. Evidence suggests that an intervention named Project ImPACT for Toddlers demonstrates positive parent and child outcomes for families in the community. Project ImPACT for Toddlers was designed specifically for toddlers by a group of parents, clinicians, researchers, and funders. It teaches parents of young children strategies to support their child's development in daily routines. This study reports the perspectives of early intervention providers who learned to use Project ImPACT for Toddlers on whether the intervention was a good fit for their practice and easy to use. The study also examines how many agencies are using Project ImPACT for Toddlers and how many families have received the intervention in the community. The goal of the study is to inform the continued use of Project ImPACT for Toddlers in the community and support offering the intervention in other regions. Participants include 38 community providers who participated in a training study of Project ImPACT for Toddlers and completed a survey and semi-structured interview after approximately 3 months of using Project ImPACT for Toddlers with families. Participants perceived the training model as acceptable and appropriate, and identified the group-based model of training, comprehensive materials, and agency support as strengths of the approach. Survey findings complemented the results from the interviews. Data indicate an increasing number of agencies and families accessing Project ImPACT for Toddlers. Efforts to expand evidence-based intervention in early intervention should continue to build upon the model used for Project ImPACT for Toddlers. [ABSTRACT FROM AUTHOR]

Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement. [ABSTRACT FROM PUBLISHER]