Coproduction with Autistic Adults: Reflections from the Authentistic Research Collective

Stark, Eloise; Ali, Dorota; Ayre, Annalise; Schneider, Naomi; Parveen, Sophia; Marais, Keith; Holmes, Nick D.; Pender, Richard

doi:10.1089/aut.2020.0050

Cited by 37 publications

(26 citation statements)

References 27 publications

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“…This aspect of our findings is in line with findings of other critical autism studies that suggested that learning about one’s autism positively transforms concepts of self, such as realizing that autistic behaviors, which look abnormal, are normal behaviors of autistic people (Seers & Hogg, 2021; Tan, 2018), whose needs for their surroundings are different from those of the majority of society who generally does not have autistic characteristics, including sensory sensitivity and social communication difficulty. Our findings on IoS as an authentically autistic way of coping also tie well with the recently growing autism literature on authenticity, wherein authenticity is discussed as an important but overlooked element to consider regarding autistic adults (Bottema-Beutel et al, 2018; Stark et al, 2021). Future empirical research that asks autistic adults about the relationship between IoS and being authentically autistic would be welcome.…”

Section: Discussionsupporting

confidence: 85%

Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood

Park-Cardoso

Silva

2022

Autism

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Insistence on Sameness has been pathologized as a subtype of restricted, repetitive patterns of behavior, interests, or activities, in autism. We examined the meanings of Insistence on Sameness for autistic adults through the lens of critical autism studies and environmental psychology, exploring their foodways and experiences of food environments, in relation to eating out and grocery shopping, and their experiences of autism (self-)diagnosis. Data were collected from earlier individual email interviews with Brazilian adults on the autism spectrum ( N = 16), either formally diagnosed in adulthood ( n = 10) or self-diagnosed ( n = 6). Our thematic analysis generated the following three themes: (1) Insistence on Sameness behaviors in food space as participants’ efforts for human–environment optimization—reducing uncertainty, uncontrollability, and exposure to unwanted sensory stimuli and social interaction; (2) suppressed Insistence on Sameness behaviors for being considered weird habits; and (3) realization of Insistence on Sameness as an authentically autistic way of coping when self-knowledge deepens through autism (self-)diagnosis. Our findings suggest autistic adults’ insistence on sameness is an authentically autistic way to appropriate space and exercise their right to comfortably co-exist and live as human beings and as themselves. Lay abstract Insistence on sameness is common in autistic individuals and continues into adulthood. Research shows it may be a way to cope with environments because of their sensory sensitivity, intolerance to uncertainty, and anxiety. Understanding the reasons for insistence on sameness from the perspective of autistic adults is important. To study the meanings of insistence on sameness for autistic adults, we interviewed 16 Brazilian autistic adults. All 10 formally diagnosed participants were diagnosed in adulthood. Six participants identified as being on the autism spectrum without formal diagnosis. During the interviews by email, we first asked about participants’ experiences with autism diagnosis, either formal diagnosis or self-diagnosis. Then, we asked about their experiences in places for eating out and grocery shopping. We found they tended to always go to the same places and use protective accessories to eat or shop comfortably. But their such behaviors were considered weird habits, first by other people and later by themselves. While trying to control their weird habits because of social pressure, they often suffered anxiety and meltdowns. When they finally learned of their autism in adulthood, they began to better understand who they are and why they experience the environment differently from others. This new understanding taught them that their so-called weird habits are actually part of their authentically autistic ways to cope with the weirder world. This study suggests that autistic adults’ insistence on sameness is an authentically autistic way to exercise their right to comfortably co-exist and live as human beings and as themselves.

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Section: Discussionsupporting

confidence: 85%

Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood

Park-Cardoso

Silva

2022

Autism

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“…Conceivably, in practice, this means some autistic individuals may not be offered EMDR even if this is potentially indicated as a treatment option. Clients should ideally have opportunities for informed discussions with therapists about which therapeutic approach may be a good fit for them ( Stark et al, 2020 ), why (e.g. based on presenting problems, goals for intervention, the evidence base) and how to evaluate if this is the case.…”

Section: Discussionmentioning

confidence: 99%

Using EMDR with autistic individuals: A Delphi survey with EMDR therapists

Fisher

Diest

Leoni

et al. 2022

Autism

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Autistic individuals are at greater risk of experiencing adverse and traumatic life events. Eye Movement Desensitisation and Reprocessing (EMDR), a psychological therapy, is potentially effective for treating the constellation of difficulties arising from traumatic experiences, as well as mental health conditions. Yet minimal research has focused on how EMDR may require adaptation to improve its accessibility, acceptability and effectiveness for autistic individuals. In a three-round Delphi survey, 103 EMDR therapists were asked about barriers to EMDR for autistic individuals and adaptations employed to enhance therapy, so as to generate consensus about important or essential components of adaptations to EMDR. Four types of barriers were highlighted: client-related characteristics, therapist-related characteristics, differences in the therapeutic relationship and systemic issues. One hundred and twenty-four adaptations were identified, including 35 general adaptations (i.e. relevant across EMDR phases), 81 relating to specific EMDR phases and 8 about EMDR clinical supervision. Of these, 27 adaptations were used often or always by at least 80% of participants; a further 61 were sometimes incorporated within therapy, depending on the client. Study findings highlight the need for EMDR therapists to have training about autism and the potential ways of tailoring EMDR, and that individual case conceptualisation is key. Lay abstract Eye Movement Desensitisation and Reprocessing (EMDR) is a psychological therapy that can help people process memories and distress about past events, so they have less impact on their daily lives. EMDR can be effective for treating symptoms of post-traumatic stress disorder, including nightmares and anxiety. Psychological therapies usually require adaptation so they are more accessible and effective for autistic people, but minimal research has focused on how best EMDR can be adapted. In this online survey study, we asked 103 EMDR therapists about barriers they think autistic people face when trying to have EMDR and what adaptations they use in their everyday practice. Four barriers were highlighted: client-related characteristics, therapist-related characteristics, differences in the therapeutic relationship and broader issues. Therapists identified a range of adaptations that can potentially be useful for autistic people, relating to being flexible, communicating clearly and having an awareness of individual differences. Many therapists emphasised the importance of not making assumptions about a person based on their autism diagnosis. Overall, the study findings suggest adaptations to EMDR are likely to be useful, but how relevant they are depends on each person.

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“…Training in co-production (a ‘co-production curriculum’) may support success [ 53 ]. However, co-production with autistic people also needs to consider their specific needs, including ways to support different communication preferences and consideration of necessary environmental adaptations [ 54 ].…”

Section: Discussionmentioning

confidence: 99%

“Work WITH us”: a Delphi study about improving eating disorder treatment for autistic women with anorexia nervosa

et al. 2023

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Background There is an increased prevalence of anorexia nervosa (AN) in autistic women and this group has poorer treatment outcomes compared to non-autistic women with AN. However, there is little research into improving eating disorder treatment for autistic women. This study investigated how best to support autistic women with AN within eating disorder services. Method A three-stage Delphi study was conducted with 49 participants with relevant expertise as a researcher, clinician, or expert by experience. Results A total of 70 statements were generated, with 56 reaching consensus after the final round. Statements reaching consensus made recommendations for adaptations to treatment, staff training, and service organisation. Conclusions The results highlight the need to distinguish between autism- and AN-related difficulties, accommodate autistic traits such as sensory sensitivities and communication differences, and ensure the autistic voice is present in both the development and delivery of care. Future research should investigate the impact of these adaptations on outcomes. The applicability of these recommendations to autistic people with other eating disorders and of other genders needs to be investigated further.

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Coproduction with Autistic Adults: Reflections from the Authentistic Research Collective

Cited by 37 publications

References 27 publications

Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood

Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood

Using EMDR with autistic individuals: A Delphi survey with EMDR therapists

“Work WITH us”: a Delphi study about improving eating disorder treatment for autistic women with anorexia nervosa

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