Connie Allen

There has been limited research into what helps to promote autistic children’s quality of life. This qualitative study, co-produced with autistic people, aimed to identify, from multiple perspectives, what helps autistic children to live a ‘good life’. We conducted semi-structured interviews with autistic adults ( n = 28) and parents of autistic children ( n = 29). Using reflexive thematic analysis, we identified four themes: Being accepted by others in a way that allows the child to be themselves; Finding ‘the things that light [the child]’; Having a sense of control over their own life and Physical/sensory environments matter. All themes were common to both autistic adults and parents of autistic children, with the exception of one sub-theme, which was predominantly driven by autistic adults’ responses. These findings highlight potential pathways to support autistic children’s quality of life now and into the future. Lay There hasn’t been much research about what helps autistic children to live a ‘good life’ or to have a good quality of life. This makes it difficult to know how to help autistic children to do so. In this study, we asked autistic adults and parents of autistic children what they thought helped autistic children to live a ‘good life’. They mentioned four important areas. These were (a) autistic children being accepted as their real or true self, (b) autistic children finding the things that they enjoy and that energise them, (c) autistic children having a sense of control in their life and (d) physical environments that suit autistic children’s sensory needs. These are things that can be changed in the autistic child’s environment to support the autistic child in living a good life.

Co-design, a collaborative approach where end-users are actively involved in design processes, has gained traction in health communication. Its integration into health communication initiatives holds promise for amplifying the voices of people with disability. Despite this, its application remains inconsistent. This scoping literature review explores how people with disability are included, when and through what methods to co-design health communication interventions. Principles of importance are considered and identified. Thirty articles published between 2018 and 2023 were reviewed. The review identified a range of methods used in health communication initiatives, with people with disability engaging at different stages and in different ways. While co-design offers potential for improved health communication, challenges such as unpredictable outcomes, diversity of participant needs, and barriers to full engagement persist. Improved transparency and consistency in reporting co-design processes are recommended to enhance rigor and effectiveness of future initiatives.

There has been limited research into what helps to promote autistic children’s quality of life. This qualitative study, co-produced with autistic people, aimed to identify, from multiple perspectives, the factors that help autistic children to live a “good life”. We conducted semi-structured interviews with autistic adults (n = 28) and parents of autistic children (n = 29). Using reflexive thematic analysis, we identified four themes: Being accepted by others in a way that allows the child to be themselves; Finding “the things that light [the child]”; Having a sense of control over their own life; and Physical/sensory environments matter. All themes were common to both autistic adults and parents of autistic children, with the exception of one sub-theme, which was predominantly driven by autistic adults’ responses. These findings highlight potential pathways to support autistic children’s quality of life now and into the future.

Researchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: “scammer” participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts. Lay Doing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were “scammer participants”: people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research.

Summary: At the broadest level, salutogenesis refers to an emphasis on the origins of health, as opposed to a predilection with the determinants of disease. Kickbusch urges health promotion professionals to adopt a salutogenic orientation; directing research and practice towards the question of ‘what creates health?’ This salutogenic study focused on the most pleasant part of the health continuum by asking: (i) what is high level wellness and (ii) how do people attain and maintain this way of being? Semi-structured interviews were conducted with 25 Australian adults who reported a ‘high’ or ‘very high’ level of wellness, health and happiness. Participants described what high level wellness meant to them, their wellness journeys, and the things that helped and hindered their wellbeing. This information was coded, compared and crafted into a constructivist grounded theory. Our interpretation of the data suggests that high level wellness is the sense of peace (wellbeing) that comes from knowing, liking and being one’s best self. Happy, healthy people seem to attain and maintain this way of being over time, through a series of self-initiated experiential learning cycles. The ‘experiential learning theory of high level wellness’ links and extends literature on salutogenesis, eudaimonic wellbeing, self-actualization and experiential learning; positioning everyday people as the leaders of their own life-long wellness journeys. It also suggests a new dimension for Antonovsky’s salutogenic theory: aspiring, not just adapting. Future research could explore the utility of our approach with a range of populations and professions, progressing towards ‘high level wellness for all’.

Health service integration seems a logical and desirable strategy to improve both the efficiency and quality of service delivery. Failure of implementation is common but may not be inevitable. This paper reports on a case study involving structured interviews and focus groups within one health service which has attempted to integrate one area of its acute and community health services. Health service integration was regarded very positively by clinicians and administrators in this case study but the change management process utilised in its implementation was not, suggesting a need for greater planning and transparency.