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).”

“There is substantial evidence of discrepancies between the research that gets done and the research that stakeholders would like to see done in other areas of health-related research, including cancer and dementia (Corner et al., 2007; Law et al., 2011; Tallon et al., 2000).”

“Priority-setting exercises involving key stakeholders are increasingly performed in health-related research (e.g. Lloyd and White, 2011; Oliver et al., 2004), yet rarely have they been conducted in the field of autism.”

“…that such an approach can not only be damaging to an individual’s self-worth but is also challenging because it views the difficulties that autistics face as straightforwardly emanating from their own ‘condition’, rather from the changeable nature of the world around them (e.g. Bagatell, 2010).”

“ethnic minorities and people from lower income households) were systematically excluded from participating, one might expect that the pattern of results should be qualitatively similar to the ones reported here but more pronounced by degree, given that these subgroups are even less likely to be accessing critical avai…”

“Autism has dramatically captured public attention in the last decade (Pellicano and Stears, 2011).”

“This situation is unlike research in other health-related areas (e.g. Chalmers, 2004; Partridge and Scadding, 2004), where there has been some steps towards reforming clinical research decision-making.”

“Although some might suggest this greater awareness to be a good thing, for our parent participants at least, the common (mis)perceptions of autism (like the savant stereotype and the ‘in a sense we’re all autistic’ stereotype (Draaisma, 2009; see also Jones and Harwood, 2009)) undermined the everyday realities and com…”

“Priority-setting exercises involving key stakeholders are increasingly performed in health-related research (e.g. Lloyd and White, 2011; Oliver et al., 2004), yet rarely have they been conducted in the field of autism.”

“There is substantial evidence of discrepancies between the research that gets done and the research that stakeholders would like to see done in other areas of health-related research, including cancer and dementia (Corner et al., 2007; Law et al., 2011; Tallon et al., 2000).”

“…be a good thing, for our parent participants at least, the common (mis)perceptions of autism (like the savant stereotype and the ‘in a sense we’re all autistic’ stereotype (Draaisma, 2009; see also Jones and Harwood, 2009)) undermined the everyday realities and complexities of living with autism.”

“This situation is unlike research in other health-related areas (e.g. Chalmers, 2004; Partridge and Scadding, 2004), where there has been some steps towards reforming clinical research decision-making.”

“uk) commissioned studies of 4 of the top 10 schizophrenia research questions (Lloyd and White, 2011).”

“Autistic people, their family members and even practitioners, however, are rarely involved in the decision-making processes that shape research and its application (though, see Parsons et al., 2013, for an emergent example).”

“In the US, the Combating Autism Act authorised US$950 million to autism research over 5 years and provided grant programmes for states to develop autism screening, early diagnosis and intervention programmes for children (Insel and Daniels, 2011; Singh et al., 2009).”

“Such approaches actively seek out the views of ‘consumers’ or stakeholders to make informed decisions about how resources are invested to address societal needs and to steer researchers towards priority topics (Lenaway et al., 2006).”

“Estimates of the ‘costs of autism’ have been reported (Knapp et al., 2009; Wang and Leslie, 2010) but are not uncontroversial.”

“The response to this ever-growing need, particularly in the United States (US), has been unprecedented (Dawson, 2013).”

“Analysis of the funding priorities of government and nongovernment organisations in the past two decades shows that the majority of funded projects focus on ‘basic science’ – on neural and cognitive systems, genetics and other risk factors (Charman and Clare, 2004; Krahn and Fenton, 2012; Office of Autism Research Coo…”

“Our results suggest the importance of making autism research more democratic (Pellicano et al., 2011; Pellicano and Stears, 2011), including greater involvement of the autism community in priority-setting exercises.”

“Not only does this account unpersuasively imply that researchers are bias-free (which is not the case; Moore, 2008), but it also suggests that the only people permitted to shape the ongoing debate about autism research and to direct the allocation of scarce resources are autism researchers themselves.”

“The expressed hope is that the surge in investment in autism research might lead to translational benefits that will, in time, enhance the life chances of autistic1 people and their families (Insel and Daniels, 2011).”

“Not only does this account unpersuasively imply that researchers are bias-free (which is not the case; Moore, 2008), but it also suggests that the only people permitted to shape the ongoing debate about autism research and to direct the allocation of scarce resources are autism researchers…”

“Autistic people (and their families) are often excluded from the decisions that affect their lives, leaving many feeling disenfranchised as a result (see Pellicano et al., 2014a, 2014b; Pellicano and Stears, 2011).”

“In their account summarizing the priorities of autism research based on interviews with people with ASC, (Pellicano et al. 2014) stressed the need to understand why women with ASC ‘slip through the net’ and to identify ways to counter this gender-based inequity in current clinical practice.”

“Fortunately, there has been increasing recognition inter-nationally that this situation needs to change, with autistic advocates, academics and activists being some of the strongest voices to speak to these issues (Michael, 2016; Milton, 2014; Nicolaidis et al., 2011; Pellicano et al., 2011).”

“…on areas that are of more immediate, practical concern or for basic science research that may be more straightforwardly translated into applications (Frazier et al., 2018; Jose et al., 2020; Pellicano et al., 2014b; Robertson, 2010; Roche, Adams, & Clark, 2021; Warner, Parr, & Cusack, 2019).”

“Less than 1 percent of autism research funding in both the United States and the United Kingdom has gone into researching adults on the spectrum or any social factors that may contribute to the high rates of mental health problems experienced by people on the autism spectrum (Pellicano et al. 2014).”

“2019; Happé and Frith 2020; Milton 2014; Milton and Bracher 2013; Nicolaidis 2012; Pellicano 2014; Pellicano et al.”

“Little is currently known about well-being in autism (Robeyns, 2016), but autonomy and a sense of belonging could be particularly important (Milton and Sims, 2016), similar to the general population (Pelton and Cassidy, 2017; Van Orden et al., 2010).”

“, James Lind Alliance, 2016) and more meaningful involvement of autistic people in research (Pellicano et al., 2014; FletcherWatson et al., 2019).”

“This is particularly relevant to autism, since there is often a mismatch between the research that gets funded and the research priorities of the autistic (and broader autism) communities (Pellicano et al., 2014).”

“…trust and mutual respect in the process of developing research results in higher quality products that are useful to the community, as exemplified by research priorities developed in collaboration with the autism community in the United Kingdom (e.g. Pellicano et al., 2014; Warner et al., 2019).”

“Autistic people are often excluded from decisions that affect their lives, thus causing them to feel disenfranchised (see Fletcher-Watson et al., 2019; Nicolaidis et al., 2011; Pellicano et al., 2014a, 2014b; Pellicano & Stears, 2011).”

“For details of what the autism community regard as priorities for autism research funding, please see the work of Pellicano, Dinsmore, and Charman (2014).”

“…et al., 2019, 2021), this adds to a growing body of evidence which shows that involving autistic people in autism science can be beneficial (Pellicano et al., 2021), although more work may be needed to increase researchers’ confidence and challenge systemic issues prohibiting participatory…”

“Increasingly, there is recognition in the autism research field generally (e.g. Pellicano et al., 2014), and in technology development for autism more specifically (e.g. Parsons & Cobb, 2014), that there should be greater participation of ‘end-users’ and other stakeholders, in making decisions…”

“Loneliness is a form of subjective social isolation and has been defined as a negative emotional state resulting from a gap between someone’s actual and desired social relationships (Peplau & Perlman, 1982).”

“…studies in this catch-all category which describe interventions that might deserve further attention given that they support improvements in domains that are often regarded as impairments by autistic people 46 and implicated in important developmental processes, but rarely targeted by intervention.”

“…‘readable’ to others because of limitations in theory of mind (Bowler, 1992; Spek et al., 2010), executive control (Ozonoff et al., 1991; Pellicano et al., 2006), emotion perception and regulation (Montgomery et al., 2013; Samson et al., 2012), and pragmatic language (Capps et al.,…”

“The nature of autistic friendships compared to neurotypical peers Like previous studies (e.g. Bauminger and Kasari, 2000; Calder et al., 2013; Petrina et al., 2014; Sedgewick et al., 2016), our autistic adolescents rated their best-friendship as less strong than that of neurotypical adolescents,…”

“, by setting priorities in research funding [40]), then the treatment of knowledge and who counts as someone producing valid knowledge has consequences.”

“Indeed, there has been growing recognition and awareness of the importance of actively including such input as an integral aspect of ASD research and service development more generally (e.g. Milton 2014; Pellicano et al. 2014).”

“…such approaches confer benefit for young children with ASD [if powered to permit tests of mediation; Gulsrud, Hellemann, Shire, & Kasari, 2015; Pickles et al., 2015], and factors that predict greater versus more limited gains from intervention, including characteristics of individuals for…”

“Research priorities for the autism community can be very different from those of the researchers (Pellicano et al., 2014).”

“…for autism research, members of a UK autism community unanimously identified a bias within the literature towards children and ‘neurotypical priorities’ that focused, for example, on unearthing underlying causes, rather than life experiences, thus failing to improve them (Pellicano et al., 2014).”

“Effective employment supports have been identified as a priority area for future ASD research (Pellicano et al., 2014) and methods of properly supporting women with ASD need to be identified.”

“More generally, the need for research relevant to the day-to-day lives of autistic people has been highlighted by the autistic and autism communities (Gotham et al. 2015, Pellicano et al. 2014), and communication is one such area (Autistica 2016).”

“Hence, research on mechanisms associated with co-occurring anxiety and depression in autism has been declared a research priority (Autistica, 2017; Pellicano, Dinsmore, & Charman, 2014), for which alexithymia may provide a tractable treatment target.”

“Given growing demands for autism research to reflect the values of individuals with autism themselves (Pellicano et al. 2014), it is becoming increasingly important to develop appropriate, valid and comprehensive measures of wellbeing that can be used across the whole autism spectrum.”

“This collaboration is in response to calls for greater involvement of the autism community in the research that affects them (Pellicano et al., 2014).”

“This emphasis on youth is also consistent with other reported evidence that services and interventions for adults with ASD are undeveloped more broadly (Gotham et al. 2015; Pellicano et al. 2014).”

“On the other hand, it is notable that the highest proportion of respondents with less positive attitudes were from the United Kingdom, also one of only two countries (with Italy) who recruited from existing communities of participants involved in early autism research.”

“Furthermore, in agreement with Macmillan et al. (2021) and Pellicano et al. (2014), we do identify that there is a need to focus on applied science to contribute to better outcomes for autistic students and to support the practice.”

“There is an urgent need to understand better the processes that underpin ASD’s poor prognosis, to inform intervention (Pellicano et al., 2014).”

“Pellicano et al. (2014) focused on parents’ views and thoughts of what autism research should focus on and found the issue of how to live with autism to be high on the list.”

“…emerging of collaborations that have involved the autism community in priority-setting and research (e.g., Nicolaidis et al., 2011, 2013; Bertilsdotter Rosqvist, 2019; Crane et al., 2019; Fletcher-Watson et al., 2019; Vincent, 2019; Young et al., 2019; Pavlopoulou, 2020; Pellicano et al., 2020).”

“Following moves in autism research more broadly [70], a wider participatory framework should be used so that the sibling research agenda reflects the views and priorities of the broader population we are aiming to understand and support.”

“Research that contributes to the improvement of mental health care is of top priority to the autism community (Pellicano et al., 2014).”

“This age related pattern will likely change with the increasing recognition of ASD needs across the life course [Pellicano, Dinsmore, & Charman, 2014; Shepherd & Waddell, 2015].”

“For example, in their U.K.-based study, E. Pellicano et al. (2014) asked participants to rate 13 specific research questions (e.g. ‘how can we better recognise signs and symptoms of autism?’).”

“The lifelong financial costs associated with maximizing functional and quality of life outcomes for those with ASD highlights the need for research efforts into very early intervention [5].”

“This fits with the anti-aus-terity narrative in grey literature with autistic people fighting against the roll back of disability services in the United Kingdom (Pring, 2019).”

“Individuals with autism have simply not been involved in setting the agenda of working out what is important to focus on (Pellicano et al., 2014) and this has led to a large mismatch between what individuals with autism say they need in terms of what constitutes positive outcomes, and what research tends to focus on.”

“This difficulty is reported in similar research with this population, suggesting more efforts are needed to design interview methods that elicit participation of all individuals with ASD (Preece and Jordan, 2009).”

“The use of participatory paradigms in autism research provides opportunities for researchers to collaborate with the autistic community to conduct research that has meaningful impacts on their everyday lives (Jivraj et al., 2014; Nicolaidis et al., 2019; Pellicano et al., 2014).”

“…beliefs, e.g. exposure to well-liked or positive atypical exemplars from the media can lead to greater acknowledgement of discrimination in society against other members of the group (Bodenhausen, Schwartz, Bless, & Wanke, 1995) and reduced endorsement of stereotypes (Ramasubramanian, 2011).”

“Crucially, there is also a lack of awareness of mental health in ASD, and affected people are sometimes not viewed as people with significant mental health concerns (Murphy et al., 2016; Pellicano et al., 2014).”

“Principle 2 is informed by prior research revealing a bias in interventionist inquiry that privileges the perspectives of social agents that hold power over disabled people rather than disabled people themselves [30, 41, 53, 65–67].”

“Most autism research represents neurotypical priorities and perspectives (Pellicano, Dinsmore, & Charman, 2014).”

“5,43 Little is known about autistic adults’ lives, especially those who have grown up with a misdiagnosis or no diagnosis at all, just as our participants had done.”

“…autism introduces two specific considerations: (1) historical disenfranchisement of autistic people in research (e.g. Beresford et al., 2004; Pellicano & Stears, 2011) that raises the need to explicitly re-articulate a commitment to high ethical standards; and (2) unique autistic…”