Autistic Adults’ Experiences Of Interacting With Other Autistic People: Systematic Review

Autistic individuals often face challenges in forming and maintaining friendships due to differences in social communication styles, sensory sensitivities, and difficulty understanding unwritten social rules.

These challenges can lead to misunderstandings, social anxiety, and feelings of isolation.

Friendships with other autistic people may help address these issues by providing a shared understanding of experiences, more compatible communication styles, and reduced pressure to conform to neurotypical social expectations.

This can create a more comfortable and authentic social environment for autistic individuals.

Watts, G., Crompton, C., Grainger, C., Long, J., Botha, M., Somerville, M., & Cage, E. (2024). ‘A certain magic’ – autistic adults’ experiences of interacting with other autistic people and its relation to Quality of Life: A systematic review and thematic meta-synthesis. Autism, 0(0). https://doi.org/10.1177/13623613241255811

Key Points

• The primary findings of this systematic review indicate that autistic adults often have positive experiences interacting with other autistic people, which can positively impact their quality of life across multiple domains.
• Factors like shared understanding, ease of communication, and sense of belonging significantly affect the quality of interactions between autistic people and associated quality of life outcomes.
• This research has certain limitations such as lack of representation of autistic people with intellectual disabilities and limited reporting of demographic data for intersectional autistic populations.
• The topic of autistic adults’ experiences interacting with other autistic people has broad relevance for understanding autistic social communication, challenging deficit-based perspectives, and informing support practices.

Rationale

What we know: Previous research has highlighted negative social experiences and communication challenges faced by autistic people when interacting with non-autistic people (Billstedt et al., 2011; Seltzer et al., 2004).

This has led to deficit-based approaches aimed at teaching autistic people normative social skills (Gernsbacher & Yergeau, 2019).

However, the Double Empathy Problem theory proposes that communication difficulties between autistic and non-autistic people are bidirectional (Milton, 2012).

Recent studies suggest autistic people may communicate more effectively with other autistic people (Crompton, Ropar, et al., 2020).

What’s the next step: Given emerging evidence on potentially positive experiences between autistic people, there is a need to systematically review the literature on how autistic adults describe spending time with other autistic people and how this relates to quality of life outcomes.

This can inform understanding of autistic social communication and community, challenging deficit-based approaches.

Method

This systematic review was registered on PROSPERO (CRD42023393210) and followed PRISMA guidelines.

The authors searched electronic databases including Scopus, PsycINFO, PsycArticles, Web of Science, and ProQuest for qualitative studies reporting on autistic adults’ experiences with other autistic people and related quality of life impacts.

Grey literature like unpublished theses was also included.

Search strategy and terms

The search strategy was developed with support from university librarians. Search strings included terms related to autistic people, contact with other autistic people, and quality of life.

Searches were conducted on August 29, 2022 across multiple databases.

Inclusion and exclusion criteria

Inclusion criteria were: 1) Reports data on autistic adults (18+), 2) Includes data on autistic adults’ experiences with any other autistic people, 3) Includes data on how these experiences relate to quality of life, 4) Reports qualitative data, 5) In English.

Both peer-reviewed and grey literature were included.

Extraction of Data: Data extraction was conducted by one reviewer for all eligible studies, with a second reviewer extracting data from 12% of studies to check agreement.

Extracted data included study characteristics, participant demographics, and relevant qualitative findings.

Statistical measures

As this was a qualitative systematic review, formal statistical analyses were not conducted.

The Critical Appraisal Skills Programme (CASP) checklist was used to assess study quality but studies were not excluded based on quality scores.

Thematic meta-synthesis was used to analyze and synthesize the qualitative data.

Results

Study and Participant Characteristics:

• 52 studies were included, published between 2012-2022
• Total of 2,872 participants across studies
• Most studies from UK (23), USA (13), Australia (6), Canada (5)
• Only 13 studies (25%) reported accessibility adaptations
• Only 6 studies (12%) included participants with intellectual disabilities or high support needs

Quality Appraisal:

• CASP checklist used to evaluate study quality
• Only 21 papers (40.38%) adequately reported on researcher positionality or community involvement

Thematic Meta-Synthesis

Three superordinate analytic themes were generated:

1. “A certain magic” – Quality of Connection

This theme captures the unique and positive qualities of interactions between autistic people, often described as having a special or magical quality.

Subthemes:

• “One of us”: Shared identity and sense of belonging. This subtheme reflects the feeling of recognition and acceptance autistic people often experience when interacting with other autistic individuals.
• “Ease of communication”: Interactions felt easier and less effortful. Many participants reported that communicating with other autistic people required less energy and felt more natural compared to interactions with non-autistic individuals.
• “Autistic seeks similar”: Desire to connect with other autistic people. This subtheme highlights the active seeking out of connections with other autistic individuals, often driven by a desire for understanding and shared experiences.
• “Autistic culture”: Distinct communication styles and social conventions. This refers to the unique ways autistic people interact with each other, including specific social norms and communication patterns that differ from neurotypical expectations.

“Being together can help” – Impact of Connection

This theme explores the various ways in which interactions between autistic people can influence their lives and well-being.

Subthemes:

• Positive experiences: Improved mental health, self-esteem, skill-sharing. Many participants reported benefits such as reduced anxiety, increased confidence, and opportunities to learn from each other’s experiences.
• Negative experiences: Conflicting needs, burden of peer support, vicarious struggles. Some participants described challenges such as sensory conflicts, feeling overwhelmed by others’ needs, or experiencing distress when hearing about others’ difficulties.

Horses for Courses – Diverse Experiences of Connection

This theme acknowledges the variety of experiences and preferences among autistic individuals regarding interactions with other autistic people.

Subthemes:

• Practicalities: Factors affecting accessibility of autistic-autistic contact. This includes physical, social, and communicative barriers that can impact the ability to connect with other autistic individuals.
• Attitudes: Varying perspectives on value of autistic-autistic contact. Some participants viewed such interactions very positively, while others were neutral or negative, often influenced by personal experiences and internalized stigma.
• Not a panacea: Cautions against viewing autistic-autistic contact as universal solution. This subtheme emphasizes that while beneficial for many, interactions with other autistic people are not universally positive or appropriate for all individuals in all situations.

Insight

This systematic review provides valuable insights into autistic adults’ experiences of interacting with other autistic people and associated quality of life impacts.

The findings challenge deficit-based perspectives on autistic social communication by highlighting many positive experiences and outcomes of autistic-autistic interactions.

Key insights include:

1. Many autistic adults report positive experiences interacting with other autistic people, characterized by a sense of shared identity, ease of communication, and belonging. This contrasts with often challenging interactions with non-autistic people.
2. Contact with other autistic people was associated with benefits across multiple quality of life domains, including emotional well-being, social inclusion, interpersonal relations, and personal development.
3. Experiences and outcomes were diverse, influenced by factors like accessibility, attitudes, and individual differences. This highlights the heterogeneity of the autistic community.
4. While largely positive, some negative experiences were reported, such as conflicting needs or vicarious struggles. This suggests autistic-autistic contact should not be viewed as a universal solution.

These findings extend previous research on autistic social experiences by systematically examining qualitative accounts across diverse contexts.

The emphasis on quality of life outcomes provides a holistic perspective on potential benefits.

Further research is needed to:

1. Explore experiences of underrepresented groups, especially autistic people with intellectual disabilities
2. Investigate factors predicting positive vs. negative outcomes of autistic-autistic contact
3. Develop and evaluate interventions to facilitate beneficial autistic-autistic interactions
4. Examine how findings translate to quantitative quality of life measures

Implications

The results have significant implications for understanding autistic social communication and informing support practices:

1. Challenge to deficit-based approaches: The findings support shifting away from interventions focused on teaching normative social skills toward facilitating opportunities for autistic people to connect.
2. Service provision: There is a clear need for more accessible opportunities for autistic adults to connect with each other, through peer support groups, social events, or online communities.
3. Clinical practice: Mental health professionals should consider the potential benefits of autistic-autistic contact when supporting autistic clients, while recognizing it is not universally positive.
4. Autism acceptance: The positive experiences reported highlight the value of autistic culture and community, supporting neurodiversity-affirming approaches.
5. Quality of life assessment: Measures of quality of life for autistic adults should consider access to and experiences with other autistic people as potential factors.
6. Research approaches: The study demonstrates the value of qualitative, participatory approaches in autism research to capture diverse lived experiences.

Variables influencing the results include accessibility of autistic-autistic contact, individual attitudes and preferences, co-occurring conditions, and intersectional identities.

The findings suggest a nuanced approach is needed, recognizing both potential benefits and limitations of autistic-autistic interactions.

Strengths

The study had many methodological strengths including:

1. Comprehensive search strategy including grey literature
2. Adherence to PRISMA guidelines for systematic reviews
3. Use of thematic meta-synthesis to integrate findings across diverse studies
4. Inclusion of autistic researchers on the team
5. Critical appraisal of included studies using CASP checklist
6. Consideration of findings in relation to quality of life domains
7. Discussion of implications for research, practice, and policy

Limitations

This study also had several methodological limitations, including:

1. Geographical restrictions: Most included studies were from Western countries, limiting generalizability to other cultural contexts.
2. Demographic limitations: There was very limited representation of autistic people with intellectual disabilities or high support needs (only 0.006% of total participants). This significantly restricts the applicability of findings to these populations.
3. Lack of reported demographic data: Many studies did not report key demographic information like ethnicity, limiting analysis of intersectional experiences.
4. Potential bias: Only 40% of included studies adequately reported on researcher positionality, raising concerns about potential researcher bias.
5. Qualitative focus: While allowing for rich data, the exclusive focus on qualitative studies limits integration with quantitative quality of life measures.
6. English language restriction: Only including English language papers may have excluded relevant research from non-English speaking countries.

These limitations highlight the need for more diverse and representative research on autistic-autistic interactions, particularly including autistic people with intellectual disabilities and from non-Western cultures.

Future studies should prioritize reporting comprehensive demographic data and researcher positionality.

References

Primary reference

Watts, G., Crompton, C., Grainger, C., Long, J., Botha, M., Somerville, M., & Cage, E. (2024). ‘A certain magic’ – autistic adults’ experiences of interacting with other autistic people and its relation to Quality of Life: A systematic review and thematic meta-synthesis. Autism, 0(0). https://doi.org/10.1177/13623613241255811

Other references

Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism, 15(1), 7-20. https://doi.org/10.1177/1362361309346066

Crompton, C. J., Ropar, D., Evans-Williams, C. V., Flynn, E. G., & Fletcher-Watson, S. (2020). Autistic peer-to-peer information transfer is highly effective. Autism, 24(7), 1704-1712. https://doi.org/10.1177/1362361320919286

Gernsbacher, M. A., & Yergeau, M. (2019). Empirical failures of the claim that autistic people lack a theory of mind. Archives of Scientific Psychology, 7(1), 102-118. https://doi.org/10.1037/arc0000067

Milton, D. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883-887. https://doi.org/10.1080/09687599.2012.710008

Seltzer, M. M., Shattuck, P., Abbeduto, L., & Greenberg, J. S. (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 10(4), 234-247. https://doi.org/10.1002/mrdd.20038

Keep Learning

1. How might the findings on positive autistic-autistic interactions challenge traditional theories of autism and social communication?
2. What ethical considerations arise when promoting autistic-autistic interactions while also supporting integration with the broader community?
3. How could future research address the limitations in representation of autistic people with intellectual disabilities?
4. In what ways might the concept of “autistic culture” impact approaches to autism intervention and support?
5. How do the findings on diverse experiences of autistic-autistic contact relate to broader debates about neurodiversity and autism acceptance?