Self-identity and belonging in autistic adolescents with MUS
Research type
Research Study
Full title
How are self-identity and belonging experienced by autistic adolescents with medically unexplained symptoms: a thematic analysis
IRAS ID
351812
Contact name
Kate Woodcock
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
0 years, 3 months, 3 days
Research summary
Research Summary:
Interpretative phenomenological analysis was used to analyse participant transcripts. Three group themes were developed that the author felt captured the experiences of those taking part:
‘Different ways your relationship with your symptoms can shape the self’;
‘The unknowns about the self that come from living with MUS’; and
‘Others play an important role in how you develop a sense of self and manage symptoms’.
Subthemes were also established, covering how support and understanding from others and developing resilience and independence may lead to a stronger self-identity and belonging. Whereas the views of others, gaps in understanding oneself and symptoms, and feeling different were challenges to self-identity and belonging.
Results highlight factors that may lead to a stronger self-identity and sense of belonging in this population and suggest possible areas where autistic adolescents may benefit from support if living with medically unexplained symptoms.
This study will explore how autistic adolescents with medically unexplained symptoms (MUS) experience self-identity and belonging. MUS are physical symptoms presumed to be genuinely experienced, but which are not fully explained by any known pathology, so therefore likely emerge from psychosocial factors acknowledged by the person, their parent or carer, and their clinician.
A high number of autistic adolescents are thought to experience MUS, whilst this population experience difficulties developing self-identity and a sense of belonging. Further, MUS are thought to have a negative impact on these two areas. Despite this understanding, no studies to date have explored how autistic adolescents with MUS experience self-identity and belonging. It is therefore important to explore this further to inform our understanding of their experiences and improve support.
This study will gather information on this topic through interviews with autistic adolescents. Interviews will be up to 1 hour long and explore views on living with MUS and its impact on self-identity and sense of belonging. Someone is eligible to take part if they are between the ages of 13 and 17, have a diagnosis of autism spectrum disorder, and are living with MUS, as defined previously. Participants will be recruited from Birmingham Children’s Hospital through the support of clinicians at the site who have expressed a keen interest in supporting this research, or via three possible schools and parent / carer groups that work directly with autistic young people (National Association of Special Schools; Outcomes First Group; and Autism parent / carer groups). Interviews will take place via a video or telephone call, or at the Birmingham Children's Hospital.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
25/SW/0098
Date of REC Opinion
1 Oct 2025
REC opinion
Further Information Favourable Opinion