The blind men and the elephant: The case for a transdiagnostic approach to initiation.

Difficulty initiating voluntary action is an under-recognized and often invisible impairment in various psychiatric, neurodevelopmental, and neurological conditions. Understanding the commonalities of volition impairments across diagnoses is limited by a lack of consistent terminology, arbitrary distinctions between conditions, the habit of looking only to the prevailing definitions and theories to explain observed traits, and the covert nature of initiation. The siloed approach to research in this area evokes the parable of the blind men and the elephant, where understanding the whole picture is impeded by a limited view. There has been little effort to consider how differing terms overlap or to use objective methods to differentiate phenomena along meaningful lines. We propose a triad of interacting elements, all of which are needed for successful initiation of voluntary action: (i) executive function, (ii) volition, and (iii) movement. Failure to initiate a response may be due to impairments in any of these, which often co-occur. This paper calls for the following considerations to improve research in this area: (i) put aside preconceptions about conditions and their mechanisms to adopt a flexible transdiagnostic approach; (ii) consider executive function, movement, and volition as possible dimensional variations with related underlying mechanisms; (iii) carefully differentiate components of complex functions; (iv) look to first-hand reports for covert and previously unrecognized traits. These approaches have the potential to elucidate the cognitive and biological mechanisms underpinning voluntary action and create a foundation to develop more appropriate and informed interventions.

"No Way Out Except From External Intervention": First-Hand Accounts of Autistic Inertia.

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.

Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice.

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.

Parent perceptions of participation in a parent-mediated communication-focussed intervention with their young child with autism spectrum disorder.

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.