Autistic perspectives on the future of clinical autism research

Pukki, Heta; Bettin, Jorn; Outlaw, Avery; Hennessy, Joshua; Brook, Kabie; Dekker, Martijn; Doherty, Mary; Shaw, Sebastian C K; Bervoets, Jo; Rudolph, Silke; Corneloup, Thibault; Derwent, Kylieanne; Lee, Onemoo; Rojas, Yadira García; Lawson, Wenn; Gutierrez, Monica Vidal; Petek, Kosjenka; Tsiakkirou, Myria; Suoninen, Annikka; Minchin, Jo; Döhle, Rainer; Lipinski, Silke; Natri, Heini M.; Reardon, Emma; Villarreal, Giovanna; Platon, Ovidiu; Chown, Nick; Ayaya, Satsuki; Milton, Damian; Walker, Nick; Roldan, Ondrej; Salcedo, Bárbara Herrán; Cañedo, Citlali Limón; MocCowan, Sue; Turner, Emma; Lammers, Jessy; Yoon, wn-ho

doi:10.31234/osf.io/qw5h2

Cited by 4 publications

(2 citation statements)

References 56 publications

(65 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Historically, the majority of autism research has been informed by the medical and psychiatric field, where autism is often described as a collection of "deficits" needing to be "fixed" (Hogan, 2019, p. 9). During the last two decades, both researchers and the autistic community itself have raised concerns about this overly deficits-focused approach to understanding autism (Milton & Sims, 2016;Pukki et al, 2022;Robertson, 2010). There is now a gradual shift from seeking to understand autism by observable signs and "symptoms" alone to first-person, subjective experiences.…”

Section: Introductionmentioning

confidence: 99%

“I have to charge my social battery”: Perspectives from autistic young adults on Quality of Life

Øverland,

Hauge,

Orm

et al. 2024

Autism

View full text Add to dashboard Cite

Several studies report on lower quality of life for autistic people when compared to non-autistic people. However, there are ongoing discussions about the conceptualization of quality of life for the autistic population. This qualitative study investigated self-perceived quality of life in the context of autistic young adults’ everyday lives. Participants (age range 21–29 years) were recruited from a 10-year follow-up study, Lillehammer Neurodevelopmental Follow-up Study, all diagnosed in childhood and adolescence. Fourteen individual in-depth interviews were conducted. When asked about what was important for having a good quality of life, our autistic participants described relationships to people and pets as important, as well as having meaningful activities. Specific interests had guided many to their choice of both academic and work career. Many also described obstacles in their environment that had influenced their quality of life negatively, such as being misunderstood by teachers and other professionals, being bullied, and sensory and emotional overload. Our findings indicate that those in supportive roles should provide help with establishing connections to activities and people/animals, as this seems to be essential for creating a good quality of life. Taking advantage of passions and interests can create opportunities for autistic people. Findings suggest that future research should address the communication barriers between autistic people and professionals that can lead to misunderstandings. Lay abstract In this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21–29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved.

show abstract

Section: Introductionmentioning

confidence: 99%

“I have to charge my social battery”: Perspectives from autistic young adults on Quality of Life

Øverland,

Hauge,

Orm

et al. 2024

Autism

View full text Add to dashboard Cite

show abstract

“…Several studies have documented the harm experienced by members of the autistic community at the hands of autism research (Rosenblatt, 2018;McGill and Robinson, 2020;Pukki et al, 2022). Autistic 1 individuals have reported feeling tokenized or undervalued (Pellicano et al, 2014), being surrounded by dehumanizing, deficit, and stigmatizing language (Botha, 2021;Botha et al, 2021), feeling pathologized or "normalized" (Ashworth et al, 2020), and receiving lower ethical standards producing experiences of coercion, discomfort, and disempowerment (Cascio et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

Examining the utilization of participatory research with autistic youth in mainstream/public schools: a scoping review

Newson,

Quinn,

Nese

2024

Front. Educ.

View full text Add to dashboard Cite

PurposeThis scoping review explores the utilization of participatory research with autistic youth in K-12 public/mainstream school settings.MethodsA scoping review was performed to identify how often participatory research methodologies are used in K-12 public/mainstream school settings with autistic students, what researchers report are the strengths, barriers, and recommendations in using participatory research methodologies with autistic students in K-12 public school settings and what type of demographic information is included in the studies.ResultsFive studies were included for review focusing on participatory research with autistic youth in K-12 public or mainstream school settings. The studies used a range of participatory research methodologies to explore the experiences of mainly male autistic youth in the UK and Australia. Strengths, challenges, and recommendations noted included opportunities for empowerment, increased ownership, issues with teachers, thinking critically about communication, and collaboration with partners.ConclusionParticipatory research with autistic school-aged youth is an emerging practice. This is evidenced by the small number of studies included in this review. The findings highlight concerns about the lack of representation of autistic females and students with historically marginalized racial identities in autism research. Recommendations for including these groups in autism research, implications, and limitations are discussed.

show abstract