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).”

“The PROMIS Autism Battery—Adult (PAB-A) included 18 PROMIS scales, addressing the constructs of emotional distress (depression, anxiety, anger) [Pilkonis et al., 2014; Yu et al., 2011], subjective well-being (meaning and purpose, positive affect, general life satisfaction) [Salsman et al., 2014],…”

“The development of an optimal level of scaffolding was described to be a foundational goal of transitional support [Kaufman, Horriks, & Kaufman, 2010; LariviereBastien & Racine, 2011; Pinzon & Harvey, 2006; Racine, Lariviere-Bastien, Bell, Majnemer, & Shevell, 2013).”

“…future research directions that are most meaningful to them, in accordance with the ‘nothing about us without us’ principle from the autistic community (Brosnan et al., 2016, 2017; Fletcher-Watson et al., 2019; Parsons et al., 2020; Pellicano et al., 2014a, 2014b; Pellicano & Stears, 2011).”

“…parents and practitioners highlight the potential negative effects of excessively positive public perceptions of autism, as many individuals with autism as well as their families indeed deal with daily struggles and challenges, which requires public recognition and support (Pellicano et al., 2014).”

“…identified as an important research priority by the autism and developmental disabilities community, particularly in improving supports for autistic people and their families and improving access to the community and employment (Pellicano et al., 2014; Roche et al., 2021; Tomlinson et al., 2014).”

“This pattern is, however, unclear in children without autism (with contradicting evidence available, Karpinski et al., 2018; Martin et al., 2010; Penney et al., 2015).”

“…for the first time in research terms, that the lack of PE teacher surveillance in the locker room provided ample opportunities to develop a sense of connectedness with peers, which is identified by Robinson and Notara (2016) as a crucial step toward feelings of belonging, through conversations.”

“As discussed earlier, the causes of such stress are likely to be complex, very often relating to inadequate or inappropriate service provision from diagnosis onwards (Crane et al. 2015; Pellicano, Dinsmore, and Charman 2014).”

“Similarly, the inclusion of autistic individuals in research is also related to their empowerment and community belonging (Andersen & Dolva, 2015), in addition to optimizing research and health policies (Fletcher-Watson et al., 2018; Perry-Hazan, 2016).”

“We view this conceptualization as being aligned with calls to amplify the voices of disabled persons about their subjective experiences (Pellicano et al., 2014).”

“It is the result, in part, of increased engagement with autistic people and their allies, who have repeatedly called for research that recognises the needs of autistic people1 living in the here-and-now (Pellicano et al., 2013, 2014).”

“Indeed, the autism community – autistic adults, parents of children with autism and professionals – has identified the lack of research on girls and women with ASD as a key problem to be addressed by future initiatives (Pellicano et al., 2014).”

“Notably, better understanding is needed of ways to achieve meaningful employment for autistic adults (Pellicano et al., 2014).”

“Service users and practitioners argue that ‘real world’ services aiming to support people in their daily lives are underserved by current research (Pellicano et al., 2014), and autism organisations have called for a greater allocation of resources to research on education, service delivery and community support (Autis…”

“However, little technologybased research has addressed academic skills and knowledge for children with ASD (Knight et al, 2013), especially beyond considerations of English and literacy (Pennington, 2010), thereby making this an area worthy of further investigation.”

“…(Baron-Cohen, Ashwin, Tavassoli, & Chakrabarti, 2009, 2011; Bölte, 2014; Grandin, 2009; Jordan & Caldwell-Harris, 2012; Kapp, GillespieLynch, Sherman, & Hutman, 2013; Lehmann et al., 2013; Pellicano et al., 2014b; Robertson, 2010; Savarese & Savarese, 2010; Tammet, 2007; Woodman et al., 2014).”

“In 2014, Pellicano and colleagues [16] investigated whether existing research in autism reflected priorities and concerns of the community, undertaking interviews and focus groups with autistic adults, family members, practitioners and researchers alongside a survey of stakeholders.”

“5,6 The limited literature available suggests that autistic individuals, including autistic women, may be at higher risk of serious mental health issues and suicide 7,8 and overall premature mortality rates.”

“This may place ASC females at increased risk of developing anxiety and depression [6, 81].”

“Older children and adolescents are especially underrepresented in the autism research literature (Pellicano, Dinsmore, and Charman 2014; Parsons et al. 2011) with their experiences generally considered under-researched (Holt 2010).”

“Furthermore, many individuals with ASD perceive sensory challenges as the true core of their condition (Chamak et al., 2008) and as a research priority (Pellicano et al., 2014).”

“To maximize the impact of research and provide patient/family-centered outcomes, it is important to match the values and perspectives of the ASD community with researchers and professionals (Pellicano & Stears, 2011; Pellicano et al., 2014).”

“While most HCI technology research “for” autism tends to be related to social skills training [ 68], autistic people themselves report problems with executive function, attention, and emotional regulation, as primary concerns [34].”

“Engagement has been broadly explored among individuals with SID/PID (Carpenter et al., 2015) but less so when there is an additional diagnosis of autism (Carpenter et al., 2016).”

“Third, within autism research, research into genetics gets the lion's share of research funding, eclipsing issues that many autistic people see as much more important, such as research on improving access to services and quality of life (Pellicano et al., 2014; Singh, 2016).”

“First, as for the majority of treatment research in ASD, there is a lack of consideration of individuals with ASD experience and judgment of SSGT (Pellicano et al., 2014).”

“Adults with ASD also face significant challenges in maintaining employment (Baldwin et al., 2014; Lorenz & Heinitz, 2014; Richards, 2012; Roux et al., 2013).”

“…to marginalisation (Cascio et al., 2021; Courchesne et al., 2021; Fayette & Bond, 2018; Flutter & Rudduck, 2004; Pellicano, Hill, & Croydon, 2014; Pellicano, Dinsmore, & Charman, 2014) and are frequently denied participation in decision-making due to a “ double denial ” (Lundy, 2007, p. 935) of…”

“We are aware that this reflects broader inclusivity issues in autism research (Pellicano et al., 2014), but failure to acknowledge heterogeneity seems to have particularly unfortunate consequences in the case of camouflaging.”

“This aligns with our commitment to centring the experiences and amplifying the voices of disabled children and young people (Pellicano et al., 2014) and decentralising non-disabled voices in research about disabled children and young people (Goodwin & Howe, 2016), and ties nicely to the ‘nothing…”

“However, the current lack of systems-level, community-relevant interventions represents a substantial gap in the literature that needs to be urgently addressed (BishopFitzpatrick et al., 2013; Pellicano et al., 2014; Warner, Parr, & Cusack, 2018).”

“Adverse event reporting involves researchers actively monitoring for events considered unfavorable or harmful that occur before, during, or after implementation of the intervention regardless of whether it can be easily determined that the event was caused by the intervention (Preyer et al., 2019).”

“5.”

“In many ways, this method is antithetical to rapid discoveries that are valid and meaningful for families and other community stakeholders (Pellicano et al., 2014; Stadnick et al., 2013).”

“Relational qualities such as adopting a nonjudgmental approach (9; e.g., Rogers, 1957), alongside having experience, knowledge and understanding of ASC (3, 9–11), and being reliable during the transition period (11) were perceived as beneficial.”

“In recent decades, growing evidence suggests that atypical sensory neural processing is an important aspect of the autistic phenotype (Baum et al., 2015; Belmonte, 2004; Brandwein et al., 2015; Cotter et al., 2022; Dinstein et al., 2012; Haigh et al., 2015; Pellicano et al., 2014).”

“In the general and mainstream autism literature, a mismatch has been identified between the kinds of research that is funded and the kinds of research that is valued by autistic groups (Pellicano et al., 2014).”

“Many autistic adults are aware of negative stereotypes that society has of autistic people, and some apply these to themselves (Botha et al., 2020; Leedham et al., 2020; Punshon et al., 2009).”

“This study acknowledged the growing demand from the autism community to lead and coproduce the research that affects them (Pellicano et al., 2014).”

“…been exacerbated in the case of autism, where it has sometimes been suggested that autistic people do not possess the requisite self-awareness to make a significant contribution to the scientific process, or that their ‘black-and-white thinking style can be a challenge’ (Pellicano et al., 2014).”

“These findings should be contextually interpreted as autism is, at least partly, a socioculturally contingent phenomenon (Mandell & Novak, 2005; Perepa, 2014).”

“While our secondary analysis responds to the research priorities of the autistic community with respect to developing knowledge about trends in employment (Nicholas et al., 2017; Pellicano et al., 2014), at this exploratory stage, we acknowledge a lack of community involvement.”

“Funding decisions are also important for empowering participants, as lack of research funding relevant to the concerns of the autism community can lead to a lack of knowledge about the topics most pressing for the community, leading to disempowerment (Pellicano, Dinsmore, and Charman 2014).”

“This program of research reflects more general calls for including autistic stakeholders when determining research priorities and when designing services meant to support autistic populations (Fletcher-Watson et al. 2018; Gotham et al. 2015; Pellicano et al. 2014).”

“Many of these exercises are underway in mental health, including in autism, where some research has suggested a gap between current funded research and the funding priorities of the autism community (Pellicano, Dinsmore, and Charman 2014).”

“These efforts have included bringing together non-academic community members to shape the research agenda (Pellicano et al., 2014b; see Roche et al., 2021, for review).”

“Despite this, research priorities have historically been dictated by funding bodies or the non-autistic research community, and often do not correspond with the needs of Autistic people (Pellicano et al., 2014).”

“First, autistic peoples’ neurominority status is intertwined with their experiences of identity-related stress in various social and environmental contexts (59).”

“The thematic analysis method was used to analyze the data collected from the transcripts (Pellicano et al., 2014; Tuckett, 2005).”

“However, we believe that the purpose of the study is aligned with autistic community members’ priorities for autism research (Pellicano et al., 2014).”

“…research models, autistic researchers can increasingly be included in the research process, and journal editors are increasingly promoting research that is informed by such collaboration, further augmenting autistic voices in research (Fletcher-Watson et al., 2019; Pellicano et al., 2014).”

“…although there is a recognised importance in identifying treatments for some conditions associated with autism (e.g. severe language delay, mental health challenges), finding the cause or a cure for autism itself is not a priority of the autism community (Pellicano, Dinsmore, and Charman 2014).”