By Dr Michelle Garnett and Professor Tony Attwood
Flourishing goes beyond feeling happy or of being free of mental or physical health symptoms. To lead a flourishing life means that we are happy, healthy, and fulfilled in each important aspect of our lives, including our relationships, our sense of meaning in life, our engagement, our emotions and our accomplishments (Seligman, 2011). The recent neurodiversity affirming movement, which has largely been led by speaking autistic people and their advocates, has resulted in researchers to start to question how they research autism generally, and how outcomes for autistic people are measured specifically.
In the past, research into interventions for autism focussed on the reduction of autistic symptoms, for example, seeking increases in social skills and decreases in rigid thinking and repetitive behaviour. Research into outcomes for autistic people have historically investigated the reduction of autistic and mental health symptoms, and the person’s quality of life (QoL). There have recently been questions about whether either a focus on the reduction of autistic symptoms, or measuring QoL using measures that were developed for nonautistic people is the best way forward and perhaps changes are needed. Perhaps quality of life and flourishing are different when someone is autistic? Maybe there is an autistic model of happiness and a meaningful life that differs from a non-autistic person’s model? Maybe an autistic person does not want a reduction in their autistic characteristics?
What does the research say about autistic flourishing?
Pellicano and Heyworth (2023) argue that the idea of flourishing has rarely been applied to autistic people due to autism being deeply rooted in the medical model, leading to research that focusses on a treatment or cure of symptoms. They describe that even when quality of life (QoL) has been studied in autistic adults, it has not been measured by understanding the autistic person’s aspirations and goals and how their life has mapped out considering these. Instead, autistic adults’ QoL has been studied against the considerations of what neurotypical people consider to be markers of success including indices such as income, relationships, housing, and life expectancy.
What are some important aspects to flourishing for autistic adults who can speak?
A recent study (McConachie et al, 2020) interviewed nine groups of autistic adults across four countries, Argentina, Australia, Singapore and the United Kingdom to examine whether commonly used measures for QoL with autistic people in research were relevant and if any aspect was missing.
The instruments investigated were the World Health Organisation Quality of Life questionnaire (WHOQOL-BREF) and the World Health Organisation Quality of Life Disabilities add-on Module because these are the most used tools to investigate QoL for autistic adults. The WHOQOL-BREF matches to normative QoL ideas, and assesses four domains – physical health, psychological health, social relationships and environment. The WHOQOL-Disabilities add-on is often used in outcome research on autism because autism is classified as a disability. It includes three domains – discrimination, autonomy and inclusion. Participants included thirty-eight consultees, 24 of whom were male. Results showed that most of the items on each of the questionnaire were deemed important and relevant for autistic people across all four countries. The interviewers also asked the consultees which areas of life that are important to autistic people’s QoL but were not mentioned in the two questionnaires.
Transcripts of the interviews were analysed for themes. Five themes considered highly relevant to QoL for autistic people across all the groups included:
- Other people’s knowledge about autism. A common theme for consultees was that lack of knowledge about autism impacted on their quality of life, because it created barriers to accessing support and services.
- Characteristics of autism. Consultees described that some of their autistic strengths and difficulties could be difficult to deal with, for example, being very honest or direct with people, or sensory issues they experienced, and this would negatively impact their quality of life.
- Self-determination/autonomy. Being able to be autonomous and have self-determination were seen to be very important aspects in determining quality of life. Consultees discussed that if the person did not have a positive sense of autistic identity or consider themselves as part of the wider autistic community self-determination and autonomy were negatively impacted, resulting in a poorer QoL.
- The nature of friendship; and
- Social engagement. The authors stated that it was clear from responses from the consultees that normative expectations about friendships and social engagement as being positive and therefore contributing to QoL, did not hold for this group. Instead, there was either little interest in having friends, and not being negatively impacted by this choice, or difficulties in joining in socially, difficulties in being accepted socially, and work opportunities being negatively impacted because of unhelpful expectations around social engagement. Both friendships and social engagement were seen as exhausting.
What are some important aspects to flourishing for non-speaking autistic adults?
Typically, the QoL of non-speaking autistic adults has been rated by a parent or carer using questionnaires or small focus groups. Thus, research into QoL for non-speaking and nonverbal autistic adults currently does not include their own “voice” but an interpretation by parents and carers. Lam et al (2021) addresses this important issue in their critical review of the literature that conceptualises well-being in autistic adults. To start to resolve the issue they recommend looking to the collections of poetry and autobiographies written by nonspeaking autistic adults, as well as art-based research for nonverbal autistic adults.
A Novel Approach to Understanding and Improving Autistic Flourishing
Dr Elizabeth Pelicano and colleagues (2022) applied Martha Nussbaum’s (2000, 2011) Capabilities approach, which describes ten core elements of a thriving human life to an analysis of current research on QoL outcomes for autistic adults. They argue that using the Capabilities approach has the capacity to determine whether autistic people are leading lives that are of value to them on their own terms, rather than meeting a normative standard set by other people. This approach showed that, contrary to previous research using measures described above that uniformly found lower QoL for autistic adults, the Capabilities approach showed that autistic adults have the potential to flourish in emotions, affiliation, play, connections to other species, practical reason, and autonomy, but were constrained often by external factors, such as social, economic and other environmental factors. They recommend that research efforts focus on what specific barriers to flourishing exist and how to alleviate them, including autistic people at each level of the research process.
A Promising Future
It is promising that new research is focussed on what constitutes a good autistic life. Researchers are beginning to include autistic people at each level of the research process. Now, more than ever, it is being recognised that the autistic person’s own goals, aspirations and values need to be discovered to inform that person’s life plan and priorities. Pelicano et al (2022) remind us of the importance of understanding the capabilities of the autistic person and removing barriers to allow the person to fulfill their potential and to flourish.
What may Contribute to Autistic People Leading Flourishing Lives?
Based on our own clinical experience and as consumers of the current research on this topic, we suggest the following aspects that may contribute to autistic flourishing:
- Acceptance and Understanding: Society embracing neurodiversity and understanding that autism is a natural variation in the human experience. Embracing that there is considerable diversity in neurodiversity and that an internal experience is a valid experience. Acceptance without trying to “fix” or change autistic traits, unless that person that a characteristic of autism is impeding their QoL.
- Training in Neurodiversity at College/University and Beyond. Medical and allied heath providers need training in neurodiversity to facilitate access to accessing better heath care for both physical and mental health. Educationalists need training to be able to lead the way for an inclusive society starting in kindergarten.
- Access to Supportive Resources: Access to therapies, education, healthcare, and support systems tailored to individual needs. This includes accommodations in education and workplaces.
- Autonomy and Self-Determination: Opportunities for self-expression and autonomy in decision-making, allowing individuals to pursue their interests, strengths, and passions.
- Community and Connection: Building supportive communities where autistic and neurodivergent individuals can connect with others who share similar experiences, reducing isolation and fostering a sense of belonging.
- Sensory-Friendly Environments: Creating environments that are sensitive to sensory needs, reducing overwhelming stimuli that can cause distress.
- Embracing Capabilities: Recognizing and leveraging the unique capabilities often associated with autism, such as attention to detail, creativity, and deep focus, ability to connect to animals, affective empathy and compassion, and expertise in specific topics.
- Respect for Communication Diversity: Acknowledging and respecting diverse communication styles, whether speaking or non-speaking, and supporting effective means of communication for each individual, including art, narrative and augmented communication methods.
- Celebrating Individuality: Embracing the diversity within the autism spectrum and celebrating the uniqueness of each individual.
- Reducing Stigma and Discrimination: Challenging societal stigma and discrimination against autistic individuals, promoting a more inclusive and understanding society.
- Quality of Life: Ultimately, autistic flourishing involves ensuring a good quality of life where individuals can live authentically and with dignity, pursuing their aspirations and goals in a way that brings them joy and fulfillment.
Where to From Here?
Our online courses aim to increase awareness and understanding of autism to assist autistic people and the family and professionals who support them.
Lam GYH, Sabnis S, Migueliz Valcarlos M, Wolgemuth JR. A Critical Review of Academic Literature Constructing Well-Being in Autistic Adults. Autism Adulthood. 2021 Mar 1;3(1):61-71. doi: 10.1089/aut.2020.0053. Epub 2021 Mar 18. PMID: 36601269; PMCID: PMC8992886.
McConachie H, Wilson C, Mason D, Garland D, Parr JR, Rattazzi A, Rodgers J, Skevington S, Uljarevic M, Magiati I. What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries. Autism Adulthood. 2020 Mar 1;2(1):4-12. doi: 10.1089/aut.2019.0008. Epub 2020 Mar 11. PMID: 36600984; PMCID: PMC8992842.
Nussbaum, M. (2000). Women and Human Development: The Capabilities Approach. Cambridge University Press.
Nussbaum, M. (2011). Creating Capabilities. Harvard University Press.
Seligman, Martin (2011). Flourish. New York: Free Press. pp. 16–20. ISBN 978-1-4391-9076-0.
Pellicano, E., & Heyworth, M. (2023). The Foundations of Autistic Flourishing. Current Psychiatry Reports, 25, 419 – 427.
Pellicano E, Fatima U, Hall G, Heyworth M, Lawson W, Lilley R, Mahony J, Stears M. A capabilities approach to understanding and supporting autistic adulthood. Nat Rev Psychol. 2022;1(11):624-639. doi: 10.1038/s44159-022-00099-z. Epub 2022 Sep 5. PMID: 36090460; PMCID: PMC9443657.