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Exploring Parents Experiences of an autism non-diagnosis

  • Research type

    Research Study

  • Full title

    Exploring the Psychological Journey for Parents of not Receiving a Diagnosis of Autism for Their Child



  • Contact name

    Katherine Appleby

  • Contact email

  • Sponsor organisation

    Coventry University

  • Identifier

    P130343, Coventry University Ethics

  • Duration of Study in the UK

    2 years, 6 months, 30 days

  • Research summary

    The aim of this research project is to explore the experiences of parents when their child has been through the autism spectrum assessment process but has not received a diagnosis. Autism diagnoses in children and young people are on the rise (Roman-Urrestarazu et al., 2021) increasing demands on assessment services, however, approximately 39% of children who have a diagnostic assessment, do not receive a diagnosis (Monteiro et al., 2015). To date, research has predominantly focused on the experiences of parents when their child has received a diagnosis. Therefore, the experiences of parents whose children did not receive a diagnosis remain largely unknown. This project aims to address this.

    This multisite study will employ an Interpretative Phenomenological Approach (IPA) involving conducting semi-structured interviews with each of the 10 participants (approximately) recruited from NHS Trusts, third sector organisations, private psychology practices and parent support groups. The participants will be parents of children (<18 years old) who have been through the autism assessment process and have not received a diagnosis of autism. The interview will address their experiences and psychological journey, from initial concerns to receiving the outcome and reflections on the whole process.

    Findings are anticipated to enhance understanding of parents’ experiences of the autism assessment process when their child does not receive a diagnosis, which it is hoped will enable clinicians and services to consider potential clinical implications for their practice. It is hoped that this will also improve the experience for future families going through the autism assessment process.

  • REC name

    East Midlands - Leicester Central Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    14 Oct 2022

  • REC opinion

    Favourable Opinion

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