Perspectives of autistic adolescent girls and women on the determinants of their mental health and social and emotional well-being
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RESEARCH TUESDAY SUMMARY
O'Connor RA, Doherty M, Ryan-Enright T, Gaynor K (2024). Perspectives of autistic adolescent girls and women on the determinants of their mental health and social and emotional well-being: A systematic review and thematic synthesis of lived experience. Autism. 28(4):816-830. doi: 10.1177/13623613231215026.
Why is this paper important?
The researchers primarily sought to answer the question: what are the self-reported determinants of mental health, social well-being and emotional well-being for autistic females based on empirical research to date?
What did the researchers do?
They searched three electronic databases to uncover 877 research articles for possible inclusion. Three reviewers made the final decision, and 52 studies were included, collating the perspectives of 973 autistic females aged between 13 and 70+ years old to provide an overview of factors that impact on autistic females, emotional and social well-being and mental health.
What did the researchers find?
Three themes emerged from the synthesis of the research, with subthemes underneath each. These are described below.
Theme 1:
Autistic neurotype. The overriding theme for all the research was the autistic neurotype, which described the biological and psychological aspects of being autistic, including a preference for routine and predictability, communication preferences and particular sensory profiles.
Subtheme 1.1: autism-centric mental health features. Many autistic girls and women reported that some of their autistic traits put them at risk for mental health difficulties. For example, the ‘obsessive tendencies’ of autism were associated with developing obsessive-compulsive disorder, and certain literal cognitive styles contributed to disordered eating habits.
Theme 2:
The neurotypical world. The second broad theme uncovered by the research was that being autistic and living in a world largely designed for and by neurotypical people seemed to contribute to the mental health and well-being of autistic females.
2.1 predictability versus ambiguity. An aspect of autism contributing to emotional well-being was predictability and use of routine. Both were calming and helped participants cope. They found many aspects of the neurotypical world, including people and their systems, to be unpredictable and chaotic, causing distress and social withdrawal, and therefore decreasing both social and emotional well-being.
2.2 sensory experiences. Many participants described that their autistic sensory profiles were not compatible with neurotypical sensory environments, and that this impacted their mental health and emotional well-being. The pain and distress associated with certain and sensory experiences led to avoidance of some social activities.
2.3 passionate interests. Passionate interests promoted emotional well-being, soliciting feelings of joy, pride, and freedom. Participants also described that their interests facilitated social connections and fostered learning. Participants reported that restriction, derision or not sharing their passionate interests negatively impacted their social and emotional well-being.
2.4 support and accommodations. Participants described the type of support that they felt would benefit their social and emotional well-being to include education for the autistic girl or woman themselves, including information about how neurotypical systems (e.g. workplaces and schools) could adapt to accommodate their needs better. Many noted their need for being supported by autistic people or professionals with a strong understanding of autism.
Barriers to receiving professional support included long waitlists, and then not being understood by the professional once the person was seen.
Theme 3.
Stigma. One aspect interfering with both social and emotional well-being included the experience of many autistic people that they were considered “less than” non-autistic people by non-autistic people, and this impacted on their capacity for self-acceptance and sense of inclusion.
3.1 navigating social expectations. Many participants described that they avoided social interactions due to pressure to conform to neurotypical social norms, and the resultant fear, stress and anxiety. Many had resorted to masking their autism to avoid bullying and exclusion. Masking was very much associated with a negative emotional impact, increasing depression, anxiety and stress, as well as a barrier to discovering their authentic sense of self and authentic social relationships.
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3.2. social connection. Autistic girls and women strongly desired social connection to ensure social well-being. They experienced barriers to this, largely due to the mismatch between autistic and neurotypical social and communication styles. They often felt that their neurotypical peers lacked empathy for their perspective. Many reported feeling more ease with other autistic people.
3.3 embracing autistic identity. Many girls and women described that they felt validated and had an experience of being more control of their lives when they were formally identified as being autistic. Emotional well-being improved because of improved self-acceptance, coping skills and self-compassion. The discovery also helped with social well-being, where they were able to develop connections within the autistic community, leading to a sense of belonging. They described how they could strengthen existing relationships with neurotypical people because they had improved ways of sharing their autistic needs and preferences.
3.4 victimisation and discrimination. Many participants had experienced bullying which was either directly or indirectly related to being autistic. A negative emotional impact of this was anxiety and social withdrawal. Another part of this subtheme was difficulty recognizing ill intent, and so being taken advantage of.
What are the practical implications of this research?
The researchers make several practical suggestions to address some of these issues including:
- Employment of Universal Design principles when designing environments to eliminate barriers of access from the start.
- Provision of clear visual information in public spaces to limit uncertainty.
- Designing public spaces to limit adverse sensory stimuli.
- Designing a social environment where neuro divergence is better understood, accepted and embraced.
- Providing autism acceptance training, anti-stigma campaigns or neuro diversity educational programs within schools, workplaces, Universities and within the training programmes of health professionals.
- Provision of timely autism diagnoses for females and increasing autism knowledge within support services.
- Breaking down stigma during the diagnostic assessment process by using neurodiversity affirming and strengths-focused approaches.
Strengths and Limitations of the study.
A strength of the study was highlighting of the voices of 973 autistic girls and women. One of the researchers was autistic. A limitation was that the study focused exclusively on cisgendered girls and women. It is likely that many of the findings are also applicable to autistic males and autistic people with other gender profiles. It is not known how many participants were nonspeaking, and if they were included in any studies, how their thinking was included, for e.g. caregiver reports or other means. The applicability of these findings across all gender profiles and autism profiles is unknown and requires further research.
WHERE TO FROM HERE
We have created two half-day courses for Autistic Girls and Women that will be live webcast on Friday 6th September. We describe the strengths and abilities commonly experienced by autistic girls and women, as well as key challenges, including self-understanding, developing an authentic self, navigating the workplace, executive function, including ADHD, developing relationships whilst staying true to oneself, self-advocacy and issues of mental health including anxiety, depression, autistic burnout, eating disorders and borderline personality disorder.
Kinder- und Jugendlichenpsychotherapeutin
2moSo important. In Germany I do miss diagnostik material in a female perspective. The girls are mostly not represented in our questionnaires.