What should autism research focus upon? Community views and priorities from the United Kingdom

“The resulting data were analysed using thematic analysis (Braun and Clarke, 2006).”

“…in the United Kingdom (UK) has an autism spectrum condition (Baird et al., 2006; Brugha et al., 2011) – more than a 20-fold increase from the results of the first epidemiological study (Lotter, 1966) – and such estimates are similar in other parts of the world (e.g. Elsabbagh et al., 2012).”

“Recent figures estimate that approximately 1% of the population in the United Kingdom (UK) has an autism spectrum condition (Baird et al., 2006; Brugha et al., 2011) – more than a 20-fold increase from the results of the first epidemiological study (Lotter, 1966) – and such estimates are similar in…”

“The snowball sampling technique we used has advantages (of accessing previously ‘hidden’ populations; Atkinson and Flint, 2001) but is potentially biased towards the inclusion of individuals with greater inter-connections (e.”

“Autistic people are less likely to have a well-paying job than non-autistic people; many have fewer social contacts and connections outside their immediate family and many also struggle with their mental health and material well-being (e.g. Howlin et al., 2004, 2013; Howlin and Moss, 2012).”

“Recent figures estimate that approximately 1% of the population in the United Kingdom (UK) has an autism spectrum condition (Baird et al., 2006; Brugha et al., 2011) – more than a 20-fold increase from the results of the first epidemiological study (Lotter, 1966) – and such estimates are similar in…”

“…in the United Kingdom (UK) has an autism spectrum condition (Baird et al., 2006; Brugha et al., 2011) – more than a 20-fold increase from the results of the first epidemiological study (Lotter, 1966) – and such estimates are similar in other parts of the world (e.g. Elsabbagh et al., 2012).”

“Autistic people are less likely to have a well-paying job than non-autistic people; many have fewer social contacts and connections outside their immediate family and many also struggle with their mental health and material well-being (e.g. Howlin et al., 2004, 2013; Howlin and Moss, 2012).”

“Defining the value of a human life in monetary terms is obviously far from straightforward (Gross et al., 1999), often involving multiple and valueladen assumptions.”

“Autistic people are less likely to have a well-paying job than non-autistic people; many have fewer social contacts and connections outside their immediate family and many also struggle with their mental health and material well-being (e.g. Howlin et al., 2004, 2013; Howlin and Moss, 2012).”

“One of the issues in research influenced by biomedical understanding relates to the lack of research that would meet the needs and answer the questions of those whose lives are actually influenced by autism (Pellicano, Dinsmore, and Charman 2014).”

“The company said it believes that ‘innovation comes from the edges’, and only by employing people who think differently and spark innovation will SAP be prepared to handle the challenges of the 21st century” (Pickavance, 2014 p. 139).”

“Despite the dominance of (social) neuroscientific research in the field of autism (Pellicano et al. 2014), efforts to identify reliable diagnostic biomarkers, meaningful (biological) subgroups, autism-specific genes or neural circuits, and targets for brain-based and psychopharmacological…”

“…to develop research projects that are meaningful to young people: projects that explore topics that are valuable and relevant to young people’s lives, and which clearly communicate the purpose and value of young people’s participation (Conn 2015; Loyd 2015; Pellicano, Dinsmore, and Charman 2014).”

“…demographic features, research outcomes can be easily compared across multiple articles and findings considered in relation to real-life contexts (Pellicano et al., 2014) thereby, improving the understanding of established literature as a means to identify research gaps and build on existing…”

“Urban and social settings are pivotal for empowering or disabling subjects, as testified by cross-cultural analysis (for example Kim 2012; Perepa 2014; Ha et al. 2014).”

“…findings in non-autistic adults, which demonstrate moderate positive correlations between the “brooding” and “reflective pondering” subscales of the RRS (Raes & Hermans, 2008; Treynor et al., 2003), as well as the almost exclusively positive edge weights seen in a previous network study of the…”

“Research indicates that researchers and autistic people (or their relatives) have different views on what ought to be researched (e.g. applied over basic science, and research into mental health and well-being; Frazier et al., 2018; Pellicano et al., 2014); moreover, there is growing evidence that involving autistic p…”

“Elevated anxiety in autism is associated with decreased quality of life [4], and has been identified as a research priority by the autistic community [5].”

“…strengths (positively oriented personality characteristics or traits associated with psychological well-being e.g. zest, leadership, selfregulation; Peterson and Seligman 2004), and positive institutions, communities and systems (e.g. positive youth development organizations; Seligman and…”

“Some even contend that involving people with ‘a vested interest in the research’ like Autistic people themselves goes against orthodox scientific approaches to knowledge production in which many autism researchers are trained (Pellicano et al., 2014a).”

“A common feature of all countries is the high level of healthcare expenditures by international standards, ranging from 17.7% of the GDP in die United States to 10% in the United Kingdom [32, 52, 53].”

“While a handful of previous studies have explored multidisciplinary team (MDT) professional experiences of working with individuals with ASD (e.g. Pellicano et al. 2014; Rogers et al. in press) no studies have focused specifically on SA.”

“…and perceptual processes (Miniussi, Paulus & Rossini, 2012; Miniussi & Ruzzoli, 2013; Parkin, Ekhtiari & Walsh, 2015; Taylor, 2018), and enabled a new stream of intervention research (Rossi, Hallett, Rossini, Pascual-Leone, 2009; Miniussi & Vallar, 2011, Miniussi et al., 2012; Perera et al., 2016).”

“28 Furthermore, as understandings of autistic play itself have tended to be based on non-autistic views, understanding autistic perspectives of play can improve our understanding of this phenomenon.”

“As such, we recommend a collaborative decision-making approach involving multiple stakeholders (central office, school administrators, intervention agents)—including those with autism—to facilitate implementation of autism-related EBPs (Pellicano et al., 2014; Powell et al., 2015).”

“…empirical support for sensory approaches (Benson et al., 2013; Aswathy et al., 2016; Reinoso et al., 2018), a randomized control trial, of a modified SOS approach (M-SOS) was not found to be effective in addressing food selectivity in four of the six children who took part (Peterson et al., 2016).”

“Nevertheless, the extent to which there is underlying conflict between biomarker discovery specifically and participatory research is a question that continues to be debated [21].”

“Autism affects individuals across the lifespan (American Psychiatric Association, 2013) and the autism community has been vocal in calling for increased recognition of this lifespan perspective along with corresponding services and supports across the lifespan (Pellicano et al., 2014).”

“…goals of research have become increasingly prevalent on social media and in research collaborations, with the neurodiversity movement at the cutting-edge of highlighting the common mismatches between a study’s stated scientific goals and their public communication (e.g., Pellicano et al. , 2014).”

“…physical and mental well-being, as well as the identification of autism and making services available across the lifespan (e.g. Fletcher-Watson et al., 2017; Gotham et al., 2015; den Houting & Pellicano, 2019; Nicholas et al., 2017; Pellicano et al., 2014; Shattuck et al., 2018; Vasa et al., 2018).”

“…and Tache, 2010; Drossman and Hasler, 2016; Zhao and Pack, 2017; Ganz, 2018) and, as such, disruptions to this cross talk can contribute not only to GI distress (Bielefeldt et al., 2016) but also to core behaviors used to diagnose ASD (Chaidez et al., 2014; McCue et al., 2017; Penzol et al., 2019).”

“The findings of this study support the growing call for a shift in autism research, with a new focus on issues identified as important by autistic people themselves (Pellicano, Dinsmore, and Charman 2014b, 2014a).”

“Major challenges for the future of a child with ASD include education and the possibility of employment in adulthood (Pellicano et al. 2014).”

“Participatory research with ASD stakeholders has highlighted the imbalance between existing research, largely in the biomedical and neuroscience spheres, and the need to investigate issues like stigma and support needs (29 – 31).”

“Unfortunately, external validity has been poorly reported in the SSGT literature [67], and participants attitudes and experiences have been rarely reported [50,68,69].”

“As Pellicano, Dinsmore, and Charman (2014) emphasised, it is crucial to involve and consider perspectives from within the autism community in autism research.”

“It is important to note that the highest priority reported in this study is social communication skills, and this matches the results of several studies done in developed countries (e.g. Lai & Weiss, 2017; Petrina et al., 2015; Pituch et al., 2011; Preece et al., 2017; Spann et al., 2003).”

“At the same time, PDA is not helping to fulfil wishes of people on the autism spectrum (Pellicano, Dinsmore, and Charman 2014).”

“…several authors pointed out, due to the diagnostic criteria for ASD based on the usual male presentations [1,12–14], females without language or intellectual disability may receive a different diagnosis with a detrimental effect on how the illness progresses and how well the therapy works [27,54].”

“Reasonable adjustments are needed to ensure research conducted is accessible for Autistic individuals who wish to be involved in health intervention evaluation and development [78].”

“There has been relatively little scrutiny of whether research publishing is similarly out of step, but evidence suggests that funding and publication topics are closely aligned (L. Pellicano et al., 2013).”

“77,78 82 However, given that autism research funding is generally allocated in alignment with medical model priorities, 68,83 – 86 this blame is likely misplaced.”

“In addition to this treatment gap, another significant barrier to providing high-quality post-diagnostic support is a lack of evidence for the effectiveness and cost-effectiveness of pharmacological and psychological/psychosocial interventions [25, 35, 36].”

“Partnerships between academics and autistic adults (e.g. Benevides et al., in press; Nicolaidis et al., 2019; Pellicano et al., 2014) have made great strides in ensuring that those on the autism spectrum have a voice in determining what research and outcomes are most meaningful.”

“The priorities of the research community are often at odds with the preferences of the autistic community (Pellicano et al., 2014), meaning that research into autism at present does not represent the people the research is supposed to be helping.”

“…an interview guide designed to improve access to community treatment for autistic adults with co-occurring psychiatric disorders (Maddox et al., 2020), along with qualitative studies that have assessed autism service needs (Pellicano et al., 2014; Stadnick et al., 2013; Tschida et al., 2021).”

“Gender differences may have serious implications for skill development too (Pellicano et al. 2014, Van Wijngaarden-Cremers et al. 2014).”

“Full and effective participation and inclusion of people with disabilities in society are underpinned by the freedom to make one’s own choices and individual autonomy (Porter, 2014; UN, 2006).”

“Pellicano et al [17] found that individuals with autism and their families felt excluded from most research and wanted research to address issues that were of greater importance and relevance to them, namely: education for life skills and services to support a range of needs.”

“Presently, there has been no assessment of how these technologies align with the interests of neurodivergent users, though prior work indicates substantial misalignment between research objectives and community desires [96, 124, 140, 142].”

“In relation to the current review, there is a paucity of qualitative research exploring the experiences of autistic individuals (Dean et al., 2017; Pellicano et al., 2014), with the experiences of autistic women further underrepresented and overlooked (Pellicano et al., 2014; Tint & Weiss, 2018).”

“Indeed, multiple authors have stressed the importance of including the voices of students with ASD in research (Goodall & MacKenzie, 2018; Milton & Bracher, 2013; Pellicano et al., 2014).”

“…complex practices, including understanding others’ behaviour, recognising one’s strengths and difficulties, and developing strategies to compensate and reduce the appearance of autistic behaviours, would have yet been developed (Banerjee & Yuill, 1999; Knutsen et al., 2019; Pellicano et al., 2014).”

“It focuses on treating individuals for “deficits,” and preventing, fixing, or curing autism through clinical and biomedical intervention (Gruson-Wood, 2016; Pellicano et al., 2014).”

“Further, the frustration and cynicism that Carly, Tito, and Naoki express with respect to clinical and academic experts in the field of autism, is consistent with findings from Pellicano and colleagues in their work exploring views of people in the autism community in the United Kingdom [8,9].”

“One way to strengthen our approach would be to ensure that individuals on the autism spectrum are integrated more deeply in initiating and shaping the research agenda instead of simply being recipients or discussants of it (Parsons and Cobb, 2014; Pellicano et al., 2014).”