Damian Milton

Autistic people are at increased risk of psychological distress, particularly anxiety problems. Childhood anxiety problems can lead to various negative lifelong outcomes, including disrupted education and reduced quality of life. Working closely with an Expert Reference Group and co-researchers with lived experience of autism and parenting an autistic child, we explored the experience of autistic children’s anxiety to inform autism-specific intervention development. We interviewed nine autistic children with anxiety problems and 10 parents. Interviews were analysed using Interpretative Phenomenological Analysis and Template Analysis. We report five themes: (a) Buffering the constant impact of anxiety; (b) Walking the cliff edge; (c) We’re on our own here; (d) Being understood is the safest path and (e) Pursuing a journey of learning. These themes illustrate how anxiety problems can affect autistic children and their families. Key learnings for intervention development include (a) the potential value of delivering support through an established relationship with a safe, trusted adult; (b) the possible amplifying effects of the combination of environmental factors with sensory sensitivities on anxiety and (c) acknowledging the difficult balance for families between helping the child to manage in a neurotypical world, and finding ways to adjust the environment to better meet their child’s needs. Lay Autistic children are more likely to experience problems with anxiety than non-autistic children, which can have lasting effects on their well-being and development. Understanding what anxiety problems feel like for autistic children and their parents can help create better support and interventions. In this study, a research team including autistic individuals, parents of autistic children and clinicians explored these experiences. We interviewed 10 parents and nine autistic children with anxiety problems. The interviews revealed five main themes: (a) Buffering the constant impact of anxiety; (b) Walking the cliff edge; (c) We’re on our own here; (d) Being understood is the safest path and (e) Pursuing a journey of learning . These findings highlight the complex and ongoing impact of anxiety problems on autistic children and their families. We found that helpful support for these children may come from a trusted adult with a preexisting relationship, recognising how external factors and sensory sensitivities can make anxiety worse, and considering the experiences of children and families within systems that are not designed for autistic people. This study offers important insights that can guide the development of more effective and compassionate interventions for autistic children experiencing problems with anxiety.

Autistic people commonly report differing sensory experiences. This research aimed to find out about sensory issues and the sensory environments of autistic adults who did and did not have intellectual disabilities. Online questionnaires were designed to identify sensory needs. The survey was completed by 138 autistic adults who self-reported and 58 informants reporting about autistic adults who had intellectual disabilities. Autistic adults self-reported high numbers of sensory needs compared with informant reports of the needs of autistic adults who had intellectual disabilities. It is possible that informants under-reported issues for autistic adults with intellectual disabilities. Some sensory needs are harder to observe and people with intellectual disabilities may find it difficult to communicate such needs. The authors propose that better methods of supporting communication of "harder to observe" sensory needs should be developed. Further research is needed.

Introduction: Autism has typically been characterized by its external manifestations rather than experienced phenomenology, with consequent impacts on both research and practice. There have recently been increasing calls for more phenomenological enquiry in autism, but little actual work reported. Method: A shared participatory phenomenological self-investigation was conducted, by the four authors, of lived experience across the autistic/non-autistic divide. The sample size was chosen as necessary for the feasibility and acceptability to participants of such work in this context. Roles of “researcher” and “interviewee” were purposefully alternated between participants to establish trust and reciprocity. Initial phenomenological reduction or bracketing was applied to the description and recording of each participant’s intimate lived experience in a number of key domains across social relationships, the physical environment, development, and in adult life. These experiences were shared within dialogue to open them to investigation and questioning from the others, with alternating interviewer and respondent roles. A third step synthesized these shared observations across individuals into themes of continuity and difference. Results: A number of emergent themes, such as the need for trust and reliability, and the impact of context on regulation of emotion, sociability, and empathy, showed striking commonalities between all participants. Other themes, such as primary sensory experience and social joining, pointed up more clear differences between autism and non-autism in development and the adult world. Themes of interest-focus and attention were marked by both commonalities and difference. Conclusions: This shared phenomenological method was taken as a first step within a new area of active investigation in autistic phenomenology. It proved successful in eliciting detailed information on self-experience. The results suggested hypotheses for a new understanding of autism within the wider “human” spectrum of experience; for instance, the common basic need for trust and social connection but striking differences in sensory experience. It suggested that some characteristics long thought intrinsic to autism, such as social mis-perception and reduced empathy, may be alternatively understood as state-dependent outcomes contingent on specific contexts and interactions. Implications are suggested for testing in further research, developmental theory, and intervention practice.