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).”

“In addition, it could be an interesting strategy to help autistic individuals learn to manage sensory difficulties encountered in daily life through MSE settings, one of those needs and priorities directly expressed by the autistic community (Pellicano et al., 2014).”

“This variability necessitates individualized approaches to provide support and intervention [65].”

“This seems particularly salient as these may differ from those of researchers and funders (Benevides & Cassidy, 2020; Emer-son et al., 2023; Pellicano et al., 2014).”

“…between material and social spaces (i.e. separation) and feelings within those spaces (i.e. exclusion), as well as calls for empirical research to center the views and feelings of disabled people about their experiences to better understand those experiences (Pellicano, Dinsmore, and Charman 2014).”

“Supporting the mental health of autistic young adults is a key clinical and research priority (Benevides et al., 2020; Crane et al., 2019; Pellicano et al., 2014).”

“The combination of appropriate training and the careful implementation of technologies can create an enriching and accessible educational environment for all students.”

“This proxy becomes more unreliable when consideration is given to the social construction of flourishing and “a good life” (Rodogno et al., 2016).”

“Recent priority-setting initiatives showed that experiences of individuals with ASD and their families are important for understanding their needs [54,55], moreover adequate support for these individuals requires and involves multidisciplinary care and professionals [6].”

“This is not to say that parents and research priorities are always aligned as shown in a recent survey in the United Kingdom, illustrating how research tends to be focused on biomedical aspects rather than services and supports [66].”

“But it's very tiring and exhausting” (Pellicano et al., 2014).”

“Increasingly, there is an understanding of the importance of research and training that is led or co-created by autistic people (Pellicano et al., 2014) and evidence to support the importance of peer support for autistic adults in different contexts (Crane et al., 2021).”

“Video recordings further offer the opportunity to share the research material with participants or their carers to discuss meaning in a reflective dialogue (Pink, 2013).”

“…have found that autistic adults and their family members prioritize research that can improve employment outcomes, health and wellbeing, and accessibility of services across the lifespan over biomedical or basic science research (Frazier et al., 2018; Pellicano et al., 2014; Roche et al., 2021).”

“However, autism research sometimes fails to truly describe autistic life experiences [29], and, within the current body of research examining autistic students’ transition to post-school life, the views of autistic people are not always presented [7].”

“Even though positives have been reported for the ASPAA pre-and post-program, qualitative methods are required as part of a comprehensive evaluation to gain insight into participant perspectives (Pellicano et al., 2014).”

“Additionally, autistic individuals tend to be dissatisfied with the implications and recommendations of research when they are not included in the process (Pellicano et al., 2014; Walmsley et al., 2018).”

“Diversity Autism researchers have called for a shift toward science with direct implications on daily living for individuals with autism spectrum disorder (ASD) and their families (Pellicano et al. 2014), such as literature pertaining to cultural and/or other diversity (Amaral et al. 2019).”

“…& Cimera, 2014; Howlin & Magiati, 2017; Howlin & Moss, 2012; Steinhausen, Mohr Jensen, & Lauritsen, 2016), and adults with ASD and their families have rated employment services and supports among the most important research priorities (Gotham et al., 2015; Pellicano, Dinsmore, & Charman, 2014).”

“For example, autism (Cusack & Sterry, 2017; Pellicano et al., 2014); DLD (Royal College of Speech and Language Therapists, 2019); dyslexia (Manning et al., 2025), and Tourette syndrome (Isaacs et al., 2024).”

“To bridge this gap, increase understanding, representation, and clinical relevance to autistic women, further research is needed on their gender-speci fi c experiences (Milner et al., 2019; Pellicano et al., 2014; Taylor & DaWalt, 2020).”

“In doing so, this study has extended the many benefits of participatory autism research (e.g., [47, 57–59, 62, 98]), to the science of psychometric tools used in autism research and practice.”

“This is surprising, as including autistic individuals and their families is vital to derive better practices and policies (Pellicano et al., 2013).”

“, 2017) that aims to fully reflect autistic people’s research priorities, including research into services for autistic people (Pellicano et al., 2014).”

“2017; Pellicano, Dinsmore, and Charman 2014).”

“In order to identify whether interventions work for a particular population, participants’ views and experiences need to be ascertained to inform the future development of such interventions (Kasari and Smith 2013; Pellicano, Dinsmore, and Charman 2014).”

“When asked what autism research should be focused on, Pellicano et al. (2014) found the autistic community in the United Kingdom identified education and inclusion as priority areas; however, autistic voices are often excluded from research as well as decision making such are where autism funding…”

“…allocated toward genetic research rather than to areas of interest reported by autistics and their supporters (Autism Self Advocacy Network, 2022; Cervantes et al., 2021; den Houting & Pellicano, 2019; Emerson et al., 2023; Frazier et al., 2018; Pellicano et al., 2014; Roche et al., 2021).”

“This research was not co-produced with autistic community members, but the focus of this article aligns with autistic people’s research priorities (Pellicano et al., 2014; Waddington et al., 2023).”

“There is substantial focus on setting individualized treatment goals in real-world ABA, but limited evidence about how to optimally measure progress on such individualized goals [11, 12] and what constitutes treatment “success” [13, 14].”

“The triangulation of empirically measured outcomes with participants’ views and experiences of SSGT programs provides a clearer understanding of the impact of these interventions on participants’ everyday lives and a more holistic understanding of the true efficacy of these interventions (Pellicano et al., 2014).”

“, family relationships) is represented.(15) Utilize statistical methods that allow for nonindependent data to be analyzed.”

“Few studies explore how individuals with autism think and learn in schools (Pellicano, Dinsmore, and Charman 2014).”

“Moreover, the interactive platform developed addresses the needs from the autism community and the documented disparity between research production and knowledge translation identified by previous studies 12,23,24 .”

“Pellicano et al. also stated that autism research should prioritize the learning and development of daily living skills management [23].”

“Autistic people are often left out of the research and development of interventions that affect them (Pellicano, Dinsmore, & Charman, 2014).”

“Importantly, research into the management of social and emotional issues has been identified as a high priority within the autistic community (Pellicano et al. 2014).”

“Existing research on autism in the UK has largely examined biomedical issues, such as its causes, with only 1% reported as examining societal issues such as public awareness and attitudes despite this being a research priority for autistic individuals [122].”

“Both (non-autistic and autistic) researchers (den Houting et al., 2020) and autistic research participants (Pellicano et al., 2021) have generally favorable attitudes toward it while acknowledging its challenges (Pickard et al., 2021).”

“It is recognised that autistic people often prefer structure (Ponnet et al., 2008), and this structure may be used to teach conversation skills (e.g., Doggett et al., 2013), and that certain types of conversation that may lack structure can be particularly dif fi cult for autistic people, for…”

“This is problematic because there is a growing need for practical realworld solutions for education and life skills (Pellicano et al., 2014), motivated by the fact that long-term educational, social and work-related outcomes for individuals with autism remain poor (e.g. Magiati et al., 2012).”

“Autism advocates have expressed concern that the focus on the causal roots of autism, rather than on these health concerns, has ignored the priorities and needs of the autism community, including the treatment of these associated conditions (30).”

“…these needs in school settings, particularly those related to the social emotional challenges faced by students with ASD (Koegel et al., 2012; Reichow & Volkmar, 2010; Schmidt, Stichter, Lierheimer, McGhee, & O’Connor, 2011; Schreiber, 2011). that had the most effect on students on the…”

“Caregivers play a pivotal role in initiating, sustaining, and mediating their child’s services (Pellicano et al., 2014).”

“11 Insistence on sameness behavior was the least researched area of RRB, followed by repetitive movements and special interests.”

“The autistic community has proposed that addressing the gender bias issue needs to be a priority for researchers, as it has significant ramifications for wellbeing (Pellicano et al., 2014).”

“This is problematic because the need for practical real-world solutions for education and life skills is increasing (Pellicano et al., 2014), and long-term educational, social and work-related outcomes for individuals with autism remain poor (Magiati et al., 2012).”

“In the US and UK, the vast majority of autism research funding goes to genetic and scientific research into causes and cure (Singh et al., 2009), a bias about which autistic people have expressed concerns (Pellicano et al., 2014).”

“8,11,20 However, the priorities from this study are also differentiated from previous studies by the emphasis on the unique cultural context of NZ and the centralization of the experience of autistic people in future autism research.”

“13 Although autism is commonly reported to occur more often in people assigned male at birth than in people assigned female, 14 some researchers are beginning to question whether that prevalence gap is due to autism itself, or to long-standing diagnostic practices that are based on an assigned-male…”

“Some autistic scholars discuss potential risks of nonautistic “experts” who teach about autism (e.g. Walker, 2021, p. 100).”

“High-intensity interventions for young children with autism (up to 40 hr per week) and high caregiver and clinician involvement are both expensive and timeconsuming (Leigh & Du, 2015; Ouyang et al., 2014; Pellicano et al., 2014).”

“(Curtis et al., 2019, see also Peverill, 2020; measure available from authors).”

“These concerns regarding lack of funding reflect the current economic climate as there are increasing financial strains both on the National Health Service (NHS) and third sector organisations who provide care for Autistic individuals (Pellicano et al., 2014).”