The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have ...had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.
This study, called for by autistic people and led by an autistic researcher, is the first to explore ‘autistic inertia,’ a widespread and often debilitating difficulty acting on their intentions. ...Previous research has considered initiation only in the context of social interaction or experimental conditions. This study is unique in considering difficulty initiating tasks of any type in real life settings, and by gathering qualitative data directly from autistic people. Four face-to-face and 2 online (text) focus groups were conducted with 32 autistic adults (19 female, 8 male, and 5 other), aged 23–64 who were able to express their internal experiences in words. They articulate in detail the actions they have difficulty with, what makes it easier or harder to act, and the impact on their lives. Thematic analysis of the transcripts found four overarching themes: descriptions of inertia, scaffolding to support action, the influence of wellbeing, and the impact on day-to-day activities. Participants described difficulty starting, stopping and changing activities that was not within their conscious control. While difficulty with planning was common, a subset of participants described a profound impairment in initiating even simple actions more suggestive of a movement disorder. Prompting and compatible activity in the environment promoted action, while mental health difficulties and stress exacerbated difficulties. Inertia had pervasive effects on participants’ day-to-day activities and wellbeing. This overdue research opens the door to many areas of further investigation to better understand autistic inertia and effective support strategies.
Paediatric Autism Communication Therapy is a parent-mediated, video-aided, communication-focussed intervention for young children with autism spectrum disorder. It has been shown in a UK randomised ...controlled trial to lead to improvements in parent–child communication and family quality of life, together with a sustained reduction in child autism symptom severity. This qualitative study examined parental perceptions of their participation in Paediatric Autism Communication Therapy within the context of the randomised controlled trial. Semi-structured interviews were carried out with 18 parents within 12 months of completion of the therapy. The thematic analysis provides insights into parents’ hopes, expectations, and learning processes when working with Paediatric Autism Communication Therapy therapists and carrying out daily practice in the home. Parents reported positive changes in their interaction and relationship with their child and improvements to their child’s communication and interaction. Some also highlighted poignant realisations and emotional challenges associated with taking part in this post-diagnostic therapy. Practical difficulties were also emphasised. Implications for the clinical practice of parent-mediated interventions with young children with autism spectrum disorder are discussed.
Lay abstract
Paediatric Autism Communication Therapy is an intervention for young children with autism spectrum disorder that focuses on parent–child communication. In Paediatric Autism Communication Therapy, the therapist and parent watch videos of the parent and child playing together. The therapist coaches the parent to carefully observe the child’s communication and to interact with their child in a more sensitive and responsive way. Parents are encouraged to use the strategies with their child at home. Paediatric Autism Communication Therapy has been shown to lead to long-term improvements in parent–child communication and family quality of life. This study aimed to explore parents’ perceptions of their participation in Paediatric Autism Communication Therapy. Interviews were carried out by an independent researcher with 18 parents. Parents discussed the learning processes they went through when working with Paediatric Autism Communication Therapy therapists and carrying out home practice. Some parents described initial doubts about the approach and hesitations about being videoed and analysing video material. In time, most parents came to really value the therapy and their relationship with the therapist. They reported positive changes in their interaction and relationship with their child and improvements to their child’s communication and interaction. Some also highlighted poignant realisations and emotional challenges associated with taking part in this post-diagnosis therapy. Practical difficulties were also emphasised, including the time commitment, accessibility of therapy venues and difficulties in occupying the child during therapist–parent discussion. Implications for the clinical practice of parent-mediated interventions are discussed.
Abstract Background Mental health difficulties are common for autistic people; however, almost no interventions have been co‐designed with the autistic community. Co‐design has the potential to add ...important insights from lived experience into intervention design, but there are currently limited examples of how rigorously to undertake this practice. This paper details a worked model of co‐design and its process, focussed on adapting an evidenced parent‐led intervention for non‐autistic child anxiety (HYC), to meet the needs of young autistic children. The aim is to provide an example of co‐design, integrating autistic, parental, academic, clinical, experience and expertise. Methods Using prior literature and theory, including Experience‐Based Co‐Design, we developed an iterative and collaborative process between the research team and an expert reference group (ERG). The research team comprised autistic and non‐autistic members. The ERG included parents (autistic and non‐autistic) of autistic children with anxiety problems, autistic adults with experience of anxiety problems, and clinicians with experience supporting autistic children with anxiety problems. The ERG and research team reviewed information from qualitative research interviews with autistic children with anxiety problems and their parents along with information from clinical experience and the academic literature to reach consensus on the adapted intervention design. Results The creation of a truly co‐designed intervention that includes a neurodiversity‐affirmative perspective, alongside CBT techniques. With anxiety problems experienced by autistic children being framed by combining the impacts of being neurodivergent in a neurotypical world, developmental science and well known cognitive behavioural models of child‐anxiety. Conclusion Co‐design can help to integrate multiple perspectives and result in the creation of interventions that are potentially relevant and acceptable to autistic people, their family members, and clinicians.
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