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).”

“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…”

“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…”

“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.”

“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.”

“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).”

“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.”