Achieving Best Life Outcomes for Autistic Women Without Intellectual Disability: Summary of Findings
Quality of life is the extent to which someone is healthy, comfortable, and able to take part in enjoyed activities. Research aims to find factors that help achieve good quality of life and ways of helping people that may have poorer quality of life. Previous research suggests autistic women have poorer quality of life than the general population. However, these findings are based on quality of life questionnaires that were developed with neurotypical norms and priorities in mind. It is therefore argued that the poorer quality of life reported for autistic women may not be entirely accurate as the factors that help autistic women achieve good quality of life may be different to neurotypical people. Current quality of life questionnaires may therefore not be asking the right questions to measure the true quality of life of autistic women. This study aimed to find out the factors most important to autistic women when thinking about what helps them achieve good quality of life.
Ten autistic women were interviewed via videocall, telephone call, or web-chat, depending on communication preferences. All interviews were transcribed and read through multiple times for the identification of important data points and consistent themes across the interviews. Four main themes were found from the ten interviews: positive sense of self; feeling supported; autonomy; inclusivity.
The importance of having a positive sense of self for good quality of life was highlighted in all ten interviews. Participants identified self-understanding, mental health, sense of purpose, and identifying personal strengths as key for achieving a positive sense of self. The value of diagnosis for developing a better self-understanding and a positive sense of self was highlighted by many participants. Embracing autistic traits, as opposed to attempting to mask or repress these, was implied to be beneficial for quality of life through developing a clear self-understanding of strengths, interests, and values and living in line with this.
Feeling supported was characterised differently for different relationships. For example, the autistic community was described by participants as important for relatability, mutuality, and normalisation. The importance of family and romantic partners developing understanding about autism was highlighted alongside the stability that these relationships can provide. Understanding from professionals was also reported to be important for feeling supported as challenges with being taken seriously and mutual misunderstanding was shown to negatively impact experiences with health and support services. It is suggested that a paradigm shift towards a neurodiversity framework and away from a medical ‘deficit’ model may aid the quality of life of autistic women through normalisation and acceptance of autistic traits.
Autonomy was deemed a best life outcome by participants through being able to choose their ideal environment and how to spend their time. Participants suggested greater precedence placed on living authentically aligned with interests, needs, and values over subscribing to societal norms. This finding suggested a difference between the priorities of autistic women with regards to the importance of autonomy and what is measured in current quality of life questionnaires. Therefore, previous reports of poorer quality of life of autistic women compared to the general population may reflect the use of inappropriate measurement tools for this group.
Participants talked about the value of inclusivity in the context of the difficulty of trying to function in settings that are not in line with how they best work. Spaces that consider their needs, such as having low noise levels, were reported to help them have good quality of life through reducing the difficulties experienced and providing more opportunities for thriving. This implies that quality of life may be better characterised as the goodness of fit between the autistic woman and her environment, as opposed to her ability to cope in neurotypical spaces.
This study indicated that poorer quality of life should not be assumed for autistic women and suggested the factors important to autistic women for achievement of good quality of life. The findings are important as they suggest that different factors may be important to autistic women for their quality of life than neurotypical people. As such, the development of a distinct quality of life questionnaire for this group, reflecting these differences, is recommended. Equally, participants describing the importance of having a positive sense of self and feeling supported has potential implications for clinical practice. In line with the neurodiversity paradigm, these findings indicate that strengths-based assessments, as opposed to the medical ‘deficit’ approach identifying impairments and weaknesses, may assist achievement of good quality of life for autistic women by developing self-understanding through a positive psychology lens. Further research is recommended to explore these implications. It is hoped that this will lead to better representation of the experiences and voices of autistic women in academic literature.
Arianna Paricos, Masters student, University of Manchester