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).”

“Indeed, the negative school experiences of autistic students suggests that despite growing inclusive education policies, a gap often remains between policy intent and the everyday realities of autistic students (Pellicano et al., 2014).”

“Fortunately, there is a growing awareness of the need for autism research which actively includes autistic people and aligns with their priorities (Pellicano et al., 2014).”

“…and interoception; [3, 5, 7]), atypical sensory experience is now considered a diagnostic feature of autism [8], has been linked to physical and mental health conditions that co-occur with autism (e.g., anxiety; [9, 10]), and ranks as one of the top concerns reported by autistic individuals [11].”

“…influences the framing and design of studies and the interpretation of findings given that the focus is on promoting priorities identified by neurodivergent communities (e.g., Pellicano et al., 2014) rather than on reducing symptomatology or “unwanted” behaviors (Pellicano & den Houting, 2022).”

“In line with pre-pandemic literature (Ferguson et al., 2019; Antezana et al., 2017), most telehealth services delivered interventions with a bias towards child studies (Pellicano et al., 2014).”

“…for research topic according to the seven research priorities set out in the IACC strategic plan (IACC, 2017; see den Houting & Pellicano, 2019; E. Pellicano et al., 2014): (1) Diagnosis and Screening , (2) Biology , (3) Causes and Risk Factors , (4) Treatments and Interventions , (5) Services…”

“…conventional research has been conducted without autistic people’s input, which has led to research of little relevance to people’s everyday lives (Pellicano et al., 2014), a series of ‘false leads’ (Bottema-Beutel et al., 2023) and potential misinterpretation of findings (Pellicano et al., 2022).”

“17 Research that seeks to understand the perspective of or bene fi t a community should seek input from that community.”

“…using autism screeners by clinicians (Watson & Crais, 2013) as well as a shift in research priorities in recent years away from identifying causes for autism and toward services and supports for diagnosed individuals (Fletcher-Watson et al., 2017; Gotham et al., 2015; Pellicano et al., 2014).”

“Pellicano, Dinsmore and Chapman (2014, p. 756) advocate for the greater involvement of the autism community in setting research priorities and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.”

“As demonstrated in previous research, Autistic individuals feel as though research priorities do not re fl ect nor coincide with the needs of the Autistic community (Pellicano et al., 2014; Roche et al., 2020).”

“Both interviews and focus groups followed the same schedule, offering the opportunity for a similar amount of depth, in accordance with other focus group research (e.g. Pellicano et al., 2014).”

“Low wellbeing is an urgent concern amongst autistic people and practitioners, carers, and researchers in the larger autism community.(16,17,18,19) Mental and physical health are both indicators of wellbeing that appear diminished in autistic people,(20,21,22) who also experience difficulties in accessing physical and…”

“…the present study may lie in refining our knowledge about the nature of anxiety in autistic individuals – a feature of autistic experience that has been established to be not only common but also a research area of interest to autistic individuals (Benevides et al., 2020; Pellicano et al., 2014).”

“…views of, and priorities for, autism research from the perspective of autistic persons has highlighted a clear consensus that research should focus on areas that impact people ’ s day-to-day lives, including key issues related to education and employment (Pellicano, Dinsmore, and Charman 2014b).”

“…MDD symptoms different to those reported by the general population, such as regressive behaviors, changes in autistic symptomatology, or increased irritability and aggressiveness (Chandrasekhar & Sikich, 2015; Ghaziuddin et al., 2002; Gotham et al., 2014; Perry et al., 2001; Stewart et al., 2006).”

“(cf. Pellicano et al., 2014).”

“This paper aligns with the social model of disability [69] and the neurodiversity paradigm [11, 50, 62], recognizing that disability arises from social, cultural, and structural barriers, instead of a medical model that frames disability as an individual deficit or pathology to be corrected.”

“According to previous literature, autistic people tend to want more research outside the genetic, biological, and cognitive domains (Pellicano et al. 2014b).”

“17,18 The neuro-diversity literature reports lived-experience insights into language preferences 19 and research priorities (both general 20 and applied speci fi cally to a context such as”

“Indeed, many autistic people distrust researchers (Botha, 2021; Gowen et al., 2019; Pellicano et al., 2014) and there is a dissatisfaction that the spending on autism research has not translated into meaningful impact on the lives of autistic people and their families (Pellicano et al., 2014b).”

“Studies mapping research priorities for the autism community emphasise understanding intersecting autistic identities and supporting their diverse needs (Cage et al., 2024; Pellicano et al., 2014; Putnam et al., 2023).”

“…in research directions, most scholarly research on music and autism still concentrates on music therapy options for autistic children, and has mainly dealt with the efficacy and outcomes of these therapeutic processes (Fletcher-Watson et al., 2018; Howlin et al., 2009; Pellicano et al., 2014).”

“Disproportionately little research exists for autistic adults compared to children [20, 57].”

“These critiques regularly include issues concerning a lack of participation, poor ethics or a lack of informed consent, as well as how research priorities are often a poor match with community priorities (Pellicano et al., 2014).”

“Given that the Autistic community has voiced concerns regarding the disconnect in priorities between researchers and Autistic people (Pellicano, et al., 2014), it was essential that the Autistic researcher provided input across as much self-management, including day-to-day self-management…”

“…and autism services (van Oorsouw et al., 2009) concluded that interventions that target improvements in systemic factors, such as staff culture, are beneficial in comparison to targeting behaviours in service members, such as in prevalent intervention training (see Pellicano et al., 2014).”

“and coordinating autism research across public and private organizations [Pellicano et al., 2014].”

“…scholarly discourse in disability studies, which champions individual agency (Thomas, 2006 ) and amplification of voices (Chown et al., 2017 ; Pellicano et al., 2014 ) of disabled people within decision making, as well as the ‘nothing about us, without us’ mantra of the disabled people’s…”

“In addition, the study aimed to support the employment of autistic adults, aligning with the priorities for autism research identified by autistic adults (Pellicano et al., 2014).”

“Next, we gave a short presentation on our prelimi-nary analysis showing what dyslexia research has previously been funded to capture participants' reactions to this funding distribution and whether it matched their priorities (Pellicano et al. 2014).”

“For example, in an earlier qualitative study (Pellicano et al., 2014), various community members (e.g., caregivers of autistic children, autistic adults, and autism researchers) reported somewhat differing views on the current state of community-academic partnership in research in the United…”

“Such a perspective supports a more flexible approach for these students, like Pellicano et al. (2014), which focuses on developing participation and agency with an emphasis on improving services, access, and flourishing.”

“An important study in the UK showed that autistic people and their families did not perceive research outcomes as leading to concrete improvements in their lives (Pellicano, Dinsmore, and Charman, 2014).”

“Historically, Autism research has focused on the perspectives of parents, carers and professionals, often influenced by external funding bodies, while side-lining the voices of Autistic individuals themselves (Grove et al., 2024; Pellicano et al., 2014).”

“Consistent with the broader trend of autism research that predominantly focusses on childhood (Mason et al., 2022; Pellicano et al., 2014), far less is known about the eye care experiences of autistic adults.”

“Research measuring long-term outcomes is essential to determine the sustained effectiveness of treatments [19,23].”

“Similarly, individuals with PD often exhibit a complete freezing during their movements, a form of akinesia (Perez-Lloret et al., 2014).”

“Autistic individuals’ perspectives on PA are often underrepresented in research, but recent studies are beginning to explore their experiences (Pellicano et al., 2014; Van Schalkwyk & Dewinter, 2020).”

“…including seeking employment, and to improve services to support independent living among adults with autism as a top priority [3,4], although addressing lifespan issues like the transition to and supporting needs in adulthood has not historically been a highly active research area [5,6].”

“Improving every-day life skills in Autistic people has been identified as a priority within the Autistic community (Clark & Adams, 2020; Gotham et al., 2015; Pellicano et al., 2014).”

“To better understand the school experience of autistic children has however been identified as a priority for research by the autistic community (Pellicano et al., 2014, 2018).”

“Nevertheless, the prolonged limited research attention on adults with ASD (Howlin & Magiati, 2017; Pellicano, 2014; Pellicano et al., 2014) and their relationships has meant that the needs of autistic adults, their signi fi cant others, and their family needs, have largely been overlooked by the…”

“Autism research is largely concerned with trying to understand autism and its causation (the literature is vast, but a few useful reviews are: [20–22]) rather than autistic people’s lives [23] or even listening to autistic people [24,25].”

“The push for a better understanding has included a demand for research which better serves autistic people and their priorities (Poulsen et al., 2022).”

“Whilst this remediation remains a potential, rather than a reality, biomedical research aiming to “cure” autism receives the bulk of research funding (Pellicano et al. 2014).”

“…to cancers or cardiovascular diseases (e.g., using SNPs for predicting the prognosis [Choi et al., 2013, Jeon et al., 2013, Rinella et al., 2013, Qi et al., 2014], treatment outcomes [Keane et al., 2013; Offer et al., 2013; Scartozzi et al., 2013], and risk assessment [Pazik et al., 2013; Zheng…”