Everyday executive function issues from the perspectives of autistic adolescents and their parents: Theoretical and empirical implications.

LAY ABSTRACT: Autism researchers have a long-time interest in a set of skills called executive function. These skills include planning, inhibition, and switching between one activity and another. There was a theory that these skills explained the social and thinking difficulties autistic people might have. After years of study into this, the evidence is confusing and contradictory. Autistic people tend to report struggling quite a lot with these skills. Yet, when researchers test these skills, they do not tend to find such big difficulties. In this study, we spoke to 12 autistic teenagers and seven of their mothers about this. We asked them what they thought about their own, or their child's, executive function skills. We wanted to know about things they were good at and things they struggled with. They told us that their skills were very changeable from one context to the next and from one time to the next. According to their reports, their skills depended on how motivated they were by doing the task. Another thing that influenced their skills were how anxious they felt at the time they needed to use the skill. Finally, they told us that sometimes they think differently about how best to perform a task. We discuss what these insights mean for autism researchers who study these skills. In future, research should ask people about their experiences alongside testing their abilities in different contexts. Combining these information sources will give us a better understanding of autistic people's everyday skills as well as how best to support them.

'The key to this is not so much the technology. It's the individual who is using the technology': Perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic.

LAY ABSTRACT: 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.

Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study.

LAY ABSTRACT: Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population.

Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic.

Background: The COVID-19 pandemic resulted in large-scale public health restrictions and lockdowns across many countries. There is an increasing literature on the varied impact of such lockdowns in autistic adults. However, there is very little research on how the pandemic and related public health measures may impact the willingness of autistic people in engaging and taking part in research. The aim of this qualitative study was to explore autistic adults' experiences of the COVID-19 lockdown and how the pandemic may affect future research participation. Methods: We conducted in-depth interviews with 31 autistic adults between March and July 2020. Transcripts were analyzed thematically within a critical realism framework. Results: Participants identified positive aspects of lockdown such as enjoying the lack of social pressures and using their well-developed skills for dealing with uncertainty. Autistic people also shared challenges of adjusting to lockdown, for example, rapid change in daily routines. While hopeful about the freedom gained from easing restrictions, participants were concerned about the inconsistent communication and application of rules during the transition out of lockdown. This may have exacerbated already rising mental health issues among autistic people. The participants viewed research participation and engagement with increased relevance during the pandemic and welcomed efforts to conduct research using online methods of communication. Conclusion: The COVID-19 lockdown had a varied effect in the lives and routines of autistic people. However, health care providers and researchers need to be mindful of rising mental health issues in the aftermath of the pandemic, especially for people who were already vulnerable. The response to the pandemic may have offered opportunities for innovation in research processes enabling more autistic people to engage with research and making studies more inclusive.

Why is this an important issue?: We did not know how the pandemic and the strict restrictions that followed would affect autistic people's well-being and mental health.Also, there was a worry that the pandemic would affect the number of volunteers taking part in research that matters the most to autistic people. Thus, it was important to understand any implications for the way we conduct research with the autistic community after the pandemic. What was the purpose of this study?: We explored the experiences of autistic people living through the first 6 months of the COVID-19 lockdown in the United Kingdom. We were particularly interested in autistic people's views on how the pandemic may affect them taking part in research. What did the researchers do?: We co-produced this interview study to answer our research questions. We carried out in-depth interviews with 31 autistic people. We looked for patterns or themes in what the participants said. What were the results of the study?: Autistic people we interviewed reported being able to enjoy a quieter pace of life. They felt less anxious early in the lockdown. But they also faced great challenges adjusting to changes in their daily routines. Inconsistent public health communication caused worry during the transition out of lockdown. Unnecessary stress might have led to worsening of mental health issues in some people. Our participants held positive views on taking part in and engage with research, despite the pandemic. We identified opportunities that could make research more inclusive for autistic people, for example, online methods for taking consent and taking part in research remotely. What do these findings add to what was already known?: Our study adds to the evidence of the varied responses of autistic people to the pandemic and the public health measures that it led to. One important strength of our work is our focus on the impact of the pandemic on research and implications of future research. We learnt that autistic people welcome and value the use of online technology to reach study participants. Wider use of remote technology can make research more inclusive and participatory. What are potential weaknesses in the study?: Many of our participants were already had experience participating in research. Also most had relatively high education levels. We did not include autistic people with intellectual disabilities. We did not collect information on ethnicity. Our sample is likely to have little ethnic diversity. How will these findings help autistic adults now or in the future?: We describe the experiences of autistic people in the face of unprecedented circumstances. We found the need for clear public health communication to avoid unnecessary stress. The pandemic has provided the opportunity for a wider use of remote methods of research, even in areas where this was not done in the past (e.g., clinical trials). Our study found that such approaches would make research more inclusive.

Improving Cognitive Behaviour Therapy for Autistic Individuals: A Delphi Survey with Practitioners.

There is emerging evidence of the effectiveness of individual and group cognitive behaviour therapy (CBT) for autistic individuals, in particular to address anxiety, obsessive compulsive disorder and depression. Many CBT studies have incorporated relatively stringent standards, with regards to participant inclusion/exclusion criteria, delivery of manualised approaches and assurance of therapist training and oversight. We know less about what happens in routine CBT practice and, importantly, how service provision can be improved for autistic individuals. The present study recruited 50 CBT practitioners to a three round Delphi survey. The aims were to elicit professionals' perspectives regarding barriers to the acceptability and effectiveness of CBT for autistic individuals, and to generate consensus, both about ways of enhancing service provision, as well as the autism-relevant training needs of CBT practitioners. Study findings indicated six barriers to accessible and effective CBT for autistic individuals, relating to service provision, practitioner-related factors, client-related factors, CBT-related factors, national guidelines, and systemic considerations. There was participant consensus that changes in five domains (specifically relating to process issues, service provision, practitioners, techniques and therapeutic approach) could improve the CBT care pathway. Consensus was generated about the training needs of CBT practitioners: training about autism, CBT-specific issues, co-occurring conditions and engagement, were deemed fundamental for enhancing practice. Participants also identified autism-relevant issues for clinical supervision. Further sustained research is needed to determine the effects of adapted service provision and improved practitioner knowledge and skills on the outcomes of autistic individuals who have CBT.

Comparing the Executive Function Ability of Autistic and Non-autistic Adolescents with a Manualised Battery of Neuropsychological Tasks.

Performance on a single executive function (EF) task (e.g., a card sorting task) is often taken to represent ability on the underlying subcomponent of EF (e.g., set shifting) without accounting for the non-specific and non-executive skills employed to complete the task. This study used a manualised battery of EF tasks to derive individual task scores and latent EF scores. Seventy-nine adolescents aged between 11 and 19 years, including 37 autistic and 42 non-autistic participants, matched on cognitive ability, completed the battery. Autistic adolescents had moderate global EF difficulties and had significantly more difficulties on some individual tasks. However, the samples did not differ on any of the specific individual subcomponents of EF (fluency, cognitive control and working memory).

Patterns of Continuity and Change in the Psychosocial Outcomes of Young Autistic People: a Mixed-Methods Study.

Long-term longitudinal studies have consistently demonstrated that the outcomes of autistic individuals are highly variable. Yet, these studies have typically focused on aspects of functioning deemed to be critical by non-autistic researchers, rather than autistic people themselves. Here, we uniquely examined the long-term psychosocial outcomes of a group of young autistic people (n = 27; M age = 17 years; 10 months; 2 female) followed from childhood using a combination of approaches, including (1) the standard, normative approach, which examined changes in diagnostic outcomes, autistic features and adaptive functioning over a 9-year period and (2) a qualitative approach, which involved semi-structured interviews to understand young people's own subjective experiences of their current functioning. On average, there was no significant change in young people's diagnostic outcomes and autistic features over the 9-year period, although there was much variability at the individual level. There was far less variability, however, in young people's everyday functioning, with marked declines over the same period. While these often-substantial everyday challenges aligned well with young people's subjective reports, there was no straightforward one-to-one mapping between self-reported experiences of being autistic and standard measures of severity. These findings call for concerted efforts to understand autistic outcomes through the mixing of quantitative and qualitative reports and for sustained and targeted interventions during adolescence in those areas that matter most to young people themselves.

'I definitely feel more in control of my life': The perspectives of young autistic people and their parents on emerging adulthood.

Long-term outcomes studies often paint a discouraging picture of the lives lived by autistic adults. Yet, their outcomes are often measured against normative markers of traditional adult roles, which may not apply to autistic people making the transition to adulthood. Here, we investigated the transition experiences of a group of young autistic people who were followed from childhood. Twenty-six young people and their parents (n = 28) participated in semistructured interviews on the process of transition and their aspirations for the future. Parents often voiced serious concerns about the ongoing support their children would require and the severe lack of services designed to support them as adults. Yet, overall, young people reported feeling more in control of their own lives, including developing a sense of identity and personal autonomy, both of which may be rooted in young autistic people's executive skills and their ability to develop and maintain trusting relationships with others - two potential candidate areas for targeted support. These results call into question whether the traditional standards to which we often hold young autistic people are developmentally appropriate and suggest that the pressures of striving towards more normative ways of engaging in the world may be detrimental to their well-being.

Childhood Executive Function Predicts Later Autistic Features and Adaptive Behavior in Young Autistic People: a 12-Year Prospective Study.

Longitudinal studies of autistic people show that the behavioral features of autism generally endure into adulthood. Yet the prognostic indicators remain far from certain, especially for cognitively able individuals. Here, we test the predictive power of specific cognitive skills, namely theory of mind and executive function, measured in childhood, on young people's autistic features and adaptive behavior 12 years later. Twenty-eight young autistic people (2 female) were seen twice within the space of 12 years. At Time 1 (M = 5 years; 7 months, SD = 11 months), participants were assessed on components of executive function (planning, inhibition and cognitive flexibility) and theory of mind (false-belief understanding). At Time 2, 12 years later (M = 17 years 10 months, SD = 1 year; 2 months), we measured participants' autistic features and adaptive behavior. Only Time 1 executive function skills predicted significant variance in autistic adolescents' autistic features, over and above variance attributable to early age, intellectual ability and theory of mind skills. Furthermore, early EF skills, in addition to early verbal ability and nonverbal ability, predicted significant variance in young people's adaptive behavior at the 12-year follow-up. These long-term longitudinal findings clearly demonstrate that executive function measured in early childhood has prognostic significance in a sample of young autistic people approaching emerging adulthood and underscore their importance as a key target for early intervention and support.

'The dots just don't join up': Understanding the support needs of families of children on the autism spectrum.

Much research has documented the elevated levels of stress experienced by families of autistic children. Yet remarkably little research has examined the types of support that these families perceive to be beneficial to their lives. This study, co-produced by researchers and school-based professionals, sought to establish these families' support needs from their own perspectives. In total, 139 parents of autistic children with additional intellectual disabilities and limited spoken communication, all attending an inner-city London school, participated in an initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported. Semi-structured interviews were conducted with a subgroup of parents ( n = 17), some of whom reported in the survey that they felt unsupported, in order to gain their in-depth perspectives. The results from both the survey and the interviews suggested that existing support (particularly from formal support services) was not meeting parents' needs, which ultimately made them feel isolated and alienated. Parents who were interviewed called for service provision that adopted a relational, family-centred approach - one that understands the specific needs of the whole family, builds a close working relationship with them and ensures that they are supported at times when the parents and families feel they need it most.

GPs' confidence in caring for their patients on the autism spectrum: an online self-report study.

BACKGROUND: In the UK, GPs play a key role in the identification and management of children, young people, and adults on the autism spectrum, but there is a paucity of research on GPs' perceptions of working with these patients. AIM: To understand GPs' perceived self-efficacy in identifying and managing their patients on the autism spectrum, and the factors affecting this. DESIGN AND SETTING: An online self-report survey was developed for completion by GPs across the UK. METHOD: A total of 304 GPs in the UK took part. The survey collected responses on participants' background, training, and experience, both as a GP and with regard to autism, and included a 22-item knowledge of autism questionnaire, a 14-item self-efficacy scale targeting GPs' perceived confidence in identifying and managing their autistic patients, and an open question eliciting participants' experiences of working with autistic people. RESULTS: In total, 39.5% (n = 120) of GP participants reported never having received formal training in autism. Despite demonstrating good knowledge of its key features, participants reported limited confidence in their abilities to identify and manage autistic patients, with many citing a number of barriers that overwhelmingly focused on perceived failings of the current healthcare system (such as a lack of clarity around referral pathways). CONCLUSION: There is an urgent need for improved local specialist service provision alongside clearer referral pathways for diagnosis to improve both GPs' confidence in caring for their autistic patients and the healthcare experiences of autistic patients and their families. Local clinical commissioning groups are best served to assist GPs in ensuring that they can reliably detect the condition and make appropriate provisions for support.

The Relationship between Social and Motor Cognition in Primary School Age-Children.

There is increased interest in the relationship between motor skills and social skills in child development, with evidence that the mechanisms underlying these behaviors may be linked. We took a cognitive approach to this problem, and examined the relationship between four specific cognitive domains: theory of mind, motor skill, action understanding, and imitation. Neuroimaging and adult research suggest that action understanding and imitation are closely linked, but are somewhat independent of theory of mind and low-level motor control. Here, we test if a similar pattern is shown in child development. A sample of 101 primary school aged children with a wide ability range completed tests of IQ (Raven's matrices), theory of mind, motor skill, action understanding, and imitation. Parents reported on their children's social, motor and attention performance as well as developmental concerns. The results showed that action understanding and imitation correlate, with the latter having a weak link to motor control. Theory of mind was independent of the other tasks. These results imply that independent cognitive processes for social interaction (theory of mind) and for motor control can be identified in primary school age children, and challenge approaches that link all these domains together.

Which terms should be used to describe autism? Perspectives from the UK autism community.

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.

Drawing Firmer Conclusions: Autistic Children Show No Evidence of a Local Processing Bias in a Controlled Copying Task.

Drawing tasks are frequently used to test competing theories of visuospatial skills in autism. Yet, methodological differences between studies have led to inconsistent findings. To distinguish between accounts based on local bias or global deficit, we present a simple task that has previously revealed dissociable local/global impairments in neuropsychological patients. Autistic and typical children copied corner elements, arranged in a square configuration. Grouping cues were manipulated to test whether global properties affected the accuracy of reproduction. All children were similarly affected by these manipulations. There was no group difference in the reproduction of local elements, although global accuracy was negatively related to better local processing for autistic children. These data speak against influential theories of visuospatial differences in autism.