“It’s in my Nature” – Subjective Meanings of Repetitive and Restricted Behaviors and Interests Voiced by Adults with Autism Spectrum Disorders

Goldfarb, Yael; Zafrani, Osnat; Gal, Eynat

doi:10.1007/978-3-030-66445-9_2

Cited by 3 publications

(12 citation statements)

References 26 publications

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“…Several qualitative studies (Gass, 2013;Goldfarb et al, 2021;Mercier et al, 2000;Rourke, 2019;Winter-Messiers, 2007) and autobiographical testimonies (Grandin, 2006;Suskind, 2014;Williams, 2009) suggest that specific interests have social potential for autistic individuals. However, to realize this potential, a more thorough understanding is needed of the functions that specific interests fulfill allowing autistic individuals to socially participate.…”

Section: Discussionmentioning

confidence: 99%

“…Finally, the studies by Goldfarb et al (2021), Rourke (2019) and Winter-Messiers (2007) indicate that autistic individuals use their specific interests to give direction and meaning to their lives, and to understand social situations and life events. A recent study by Goldfarb et al (2021) also contradicts a purely pathological view of other limited and repetitive behavioral patterns (e.g. body rocking, making repetitive sounds), by showing how these symptoms can have important subjective functions, such as regulating emotions, attention, and sensory experiences.…”

Section: Introductionmentioning

confidence: 99%

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Specific interests as a social boundary and bridge: A qualitative interview study with autistic individuals

Lizon,

Taels,

Vanheule

2023

Autism

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Autistic individuals often experience challenges in social communication and interaction, and there is growing evidence that specific interests can help them regulate these difficulties. However, it is unclear what specific properties of these interests make them suitable for this role. In this qualitative study, we conducted semi-structured interviews with nine autistic individuals to explore the social functions of their specific interests. Data analysis followed Grounded Theory and Interpretative Phenomenological Analysis principles. Our analysis revealed that these interests have two important functions in social communication and interaction. On one hand, they provide a means of disconnecting from the often-distressing challenges in the social outside world. On the other hand, specific interests serve as a social compass: they provide structure and meaning to social reality, can foster a sense of connection with others, and provide an entryway for social participation. Based on these findings, we propose a conceptual model suggesting that specific interests enhance the experience of a psychological boundary between oneself and others, which contributes to a sense of safety during social interactions. Our study suggests that incorporating specific interests into therapeutic interventions can improve the social communication and interaction of autistic individuals, without losing sight of their personal well-being. Lay abstract Growing evidence shows that specific interests can help autistic individuals cope with difficulties in social communication and interaction. However, it is unclear which specific characteristics of these interests make them suitable for this coping role. Therefore, this study explored how specific interests can help autistic individuals navigate social communication and interaction. We conducted semi-structured interviews with nine autistic individuals to inquire about their perspectives on the meanings and functions of their specific interest in their (social) life. We found that specific interests served two important social functions. First, the interests provided a way to disconnect from the challenging outside world, through a shift in the attentional focus of participants. Second, the interests served as a “social compass,” providing structure and meaning to social situations and helping the participants feel more connected to others. Based on these findings, we propose a conceptual model suggesting that specific interests create the experience of a “protective boundary” between oneself and others, which helps autistic individuals feel safe during social interactions. Namely, engaging in specific interests not only creates a space where autistic individuals can retreat when they feel overwhelmed, but also provides a framework with delineations in time and space, as well as explicit rules for social interactions, which make them more predictable and regulated. The study suggests that incorporating specific interests into therapy can help improve social communication and interaction for autistic individuals while still prioritizing their personal well-being.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Specific interests as a social boundary and bridge: A qualitative interview study with autistic individuals

Lizon,

Taels,

Vanheule

2023

Autism

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“…RRBI have been described as affecting various daily functions, such as self-care, social occupations, and activities. For example, a child with autism may insist on wearing a favorite shirt every day, regardless of the season and weather [ 10 , 11 ]. The behaviors may affect the children’s and family members’ participation in common situations and require daily changes and modifications.…”

Section: Introductionmentioning

confidence: 99%

“…These behaviors can result in strong stigma and social rejection [ 10 ]. They might pose challenges to involvement in social occupations and limit the development and implementation of acceptable, compatible regulation means that would be more flexible or age-appropriate [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

“…However, studies and interviews with people with autism show that RRBI behaviors play a role in promoting participation and attention in situations of sensory overload and high stress [ 10 ]. Furthermore, when restricted interests are viewed as a strengthening and motivational factor, they can provide options for developing conversational skills around the topics of special interests, a deeper understanding of topic-related situations, and even career opportunities in the specific field [ 5 , 10 , 13 ]. Therefore, therapists working with children with autism must understand what these behaviors mean to the person who performs them.…”

Section: Introductionmentioning

confidence: 99%

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The Relations between Repetitive Behaviors and Family Accommodation among Children with Autism: A Mixed-Methods Study

et al. 2023

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Restricted and repetitive behaviors and interests (RRBI) are a significant component in diagnosing autism spectrum disorder (ASD). They often pose the main challenge in day-to-day functions for children with ASD and their families. Research addressing family accommodation behaviors (FAB) in the ASD population is scarce, and associations with the characteristics of the children’s behaviors are unclear. This sequential mixed-methods study assessed the correlation between RRBI and FAB within the ASD group to deepen the understanding of parents’ subjective experiences regarding their children’s RRBI. It included a quantitative phase with a follow-up qualitative study. A total of 29 parents of children with autism (5–13 yr) completed the study questionnaires; a total of 15 also were interviewed regarding their children’s RRBI and related FAB. We used the Repetitive Behavior Scale-Revised (RBS-R) to assess RRBI, and the Family Accommodation Scale (FAS-RRB) to assess FAS. In-depth interviews from phenomenological methodology were used in the qualitative phase. We found significant positive correlations between the RRBI and FAB overall and their subscores. Qualitative research supports these findings, adding descriptive examples of the accommodations families make to address the RRBI-related challenges. The results indicate relations between RRBI and FAB and the importance of practically addressing children with autism’s RRBI and their parents’ experiences. Both affect and are affected by the children’s behaviors.

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Where do autistic people work? The distribution and predictors of occupational sectors of autistic and general population employees

Goldfarb,

Assion,

Begeer

2024

Autism

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Previous research on employment outcomes of autistic adults mainly assessed if they work and under what terms, with mostly anecdotal descriptions of where they work. This study aimed to identify the employment sector distribution of autistic employees compared to the general workforce in the Netherlands and to explore possible background predictors. Participants were 1115 employed autistic adults (476 male; 627 female; 12 other; mean age: 40.75) who completed a cross-sectional survey assessing employment sector, gender, age, age at diagnosis, educational level, degree of autistic traits, and presence of focused interests. Dutch workforce data were retrieved from the Central Bureau of Statistics. Results indicated significant differences in sector distribution across the two populations. Autistic adults were over-represented in the sectors healthcare & welfare, information technology, and public–army–charity, which were the three most-common sectors for this group. In economics & finances, and industry & construction, higher proportions were found in the general workforce. Most autistic employees in the healthcare & welfare sector were females while having a higher educational degree and being male predicted placement in information technology. The broad distribution of autistic employees beyond the information technology sector was notable, supporting the need for an individual approach to employment integration. Lay Abstract Studies on employment of autistic individuals mainly assessed if they work and what their working conditions are (e.g. weekly hours, salary) while less is known about where they work. We explore this issue in our study, by examining which employment sectors do autistic adults work in, and comparing them to the general workforce in the Netherlands. We also explored the possibility that gender, age, age at diagnosis, level of education, degree of autistic traits and presence of focused interests could lead to a higher likelihood of working in specific sectors. We assessed data from a survey filled in by 1115 employed autistic adults (476 male; 627 female; 12 other; mean age: 40.75). Dutch workforce information was based on data form the Central Bureau of Statistics. Results showed that a higher proportion of autistic employees worked in healthcare & welfare, information technology, and the public–army–charity sectors. These were the three most-common sectors for this group. A lower proportion of autistic employees worked in economics & finances, and industry & construction, compared to the general workforce. Most autistic employees in the healthcare & welfare sector were females while having a higher educational degree and being male increased the chance of working in information technology. In addition to the common impression that most autistic individuals have interests or abilities that align with employment in information technology and technology sectors, we found that autistic employees worked in various sectors. It is important to address individual characteristics and needs of autistic individuals, while encouraging diverse employment opportunities.

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“It’s in my Nature” – Subjective Meanings of Repetitive and Restricted Behaviors and Interests Voiced by Adults with Autism Spectrum Disorders

Cited by 3 publications

References 26 publications

Specific interests as a social boundary and bridge: A qualitative interview study with autistic individuals

Specific interests as a social boundary and bridge: A qualitative interview study with autistic individuals

The Relations between Repetitive Behaviors and Family Accommodation among Children with Autism: A Mixed-Methods Study

Where do autistic people work? The distribution and predictors of occupational sectors of autistic and general population employees

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