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Cited by 225Autism Spectrum Disorder ResearchDisability Rights and RepresentationFamily and Disability Support Research

How is a sense of well-being and belonging constructed in the accounts of autistic adults?

Open access
Milton, Damian, Sims, Tara·2016·Disability & Society
DOI 10.1080/09687599.2016.1186529
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Abstract

This small-scale exploratory study sought to develop an understanding of the meaning of well-being and social belonging as represented within the narratives of adults on the autism spectrum. Employing an interpretivist approach facilitated the investigation of potential contributory factors to these lived experiences in order to inform further research regarding both this topic, and service provision for adults on the autism spectrum. The project involved a thematic analysis of issues of the magazine Asperger United (AU). Four broad main themes were identified: meeting personal needs, living with the consequences of an ‘othered’ identity, connection and recognition, and relationships and advocacy. Autistic adults reported many barriers to feeling that they belonged in a number of social spaces and the detrimental effect this had on their wellbeing. Fundamental to positive narratives of wellbeing, were feelings of connection and recognition from others and positive accepting relationships, with autistic-led spaces, particularly the Autscape conference, being frequently cited as of central significance in increasing feelings of wellbeing and belonging. This study has demonstrated a need for less focus on remediation and more on limiting the social isolation of autistic people.

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Crossref · 10.1080/09687599.2016.1186529

Cites

23 of 23 references verified0 citation errors · 0 not checkable

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  • Repetitive behaviors and focused interests are important to the internal regulation and well-being of many Autistic individuals.

    “Repetitive behaviors and focused interests are important to the internal regulation and well-being of many Autistic individuals (Kapp et al., 2019; Manor-Binyamini & Schreiber-Divon, 2019; Milton & Sims, 2016; see also Grove et al., 2018).”

    From Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework (2022) · cites this paper as Milton & Sims, 2016

    The “Meeting personal needs” section links pursuit of interests to personal fulfilment and discusses minimising stress and sensory overload. The “Discussion of key points” (p. 19) also recommends attending to autistic people’s personal interests when considering wellbeing. Our copy does not say that repetitive behaviours serve internal regulation, and its findings concern accounts of autistic adults rather than autistic individuals generally. (LLM, conf=0.86)

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  • Milton and Sims found that a key reason autistic people attributed to hindering their wellbeing was barriers to belonging, rather than simply their being autistic.

    “For instance, Milton and Sims found that a key reason autistic people attributed to hindering their wellbeing was barriers to belonging, rather than simply their being autistic (Milton & Sims, 2016).”

    From Neurodiversity, epistemic injustice, and the good human life (2022) · cites this paper as Milton & Sims, 2016

  • The term masking was used in 1969 to mean concealing disgust and has since come to be used within the autistic community to mean hiding one's symptoms.

    “The term masking was used in 1969 to mean concealing disgust (Ekman & Friesen, 1969) and has since come to be used within the autistic community to mean hiding one’s symptoms (Milton & Sims, 2016; Willey & Attwood, 2015).”

    From The experiences of adults with ADHD in interpersonal relationships and online communities: A qualitative study (2023) · cites this paper as Milton & Sims, 2016

  • Having the opportunity to engage with others who are like-minded and to develop one's sense of belonging is thought to be important to the well-being of autistic adults.

    “having the opportunity to engage with others who are like-minded and to develop one’s sense of belonging is thought to be important to the well-being of autistic adults (Milton and Sims 2016).”

    From Experiences of autism acceptance and mental health in autistic adults (2018) · cites this paper as Milton and Sims 2016

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Cites

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1 of the 24 references couldn’t be matched to a known paper.

Research works printed but not linked: 2

  1. Arnold, L. (2012) "Autism (Book Review)."Disability and Society 27 (5): 729-730.
  2. Gephart, R. (1999) "Paradigms and Research Methods".Research Methods Forum: 4. https://www.academia.edu/1984671/Paradigms_and_research_methods, International Wellbeing Group.2006.Personal

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Authors
Milton, D., & Sims, T.
Affiliations
London South Bank University (GB)
Corresponding author
Milton, Damian
ORCID
Venue
Disability & Society
Publisher
Informa UK Limited
Published
2016-04-20
Volume
31
Issue
4
Pages
520-534
ISSN
  • 0267-4645 (ISSN-L)
  • 0968-7599
  • 1360-0508
DOI
10.1080/09687599.2016.1186529
OpenAlex
W2415653571
Cited by
225
References
24
Citations by year
2026: 29 · 2025: 44 · 2024: 37 · 2023: 29 · 2022: 25 · 2021: 24 · 2020: 15 · 2019: 10 · 2018: 9 · 2017: 2 · 2016: 1
FWCI
4.68
Type
journal article
Language
en
Open access
Locations
  • Disability & Society (publishedVersion)
  • Kent Academic Repository (University of Kent) (acceptedVersion)
  • Kent Academic Repository (University of Kent) (submittedVersion)
  • University of Brighton Repository (University of Brighton) (submittedVersion, other-oa)
Topics
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Social Sciences › Safety Research › Disability Rights and Representation
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
Keywords
autistic adults, well-being, social belonging, lived experience, othering, social isolation, advocacy, relationships, recognition

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