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

• IRAS ID

  311193

• Contact name

  Katherine Appleby

• Contact email

  applebyk2@coventry.ac.uk

• Sponsor organisation

  Coventry University

• Clinicaltrials.gov 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.
  Lay summary of study results: “I’m not an expert, I’m not a clinical psychologist … I am however an expert in my daughter”: Exploring the Psychological Journey for Parents of not Receiving an Autism Diagnosis for Their Child

  This study was carried out by Dr Katherine Appleby as part of her Clinical Psychology Doctoral training. The study was sponsored by Coventry University. The study took place between May 2022 and September 2023. The interview guide for this study was reviewed by an expert-by-experience (parent).

  There are increasing referral rates amongst children for autism assessments (NHS Digital, 2022). Families typically experience longer-than-recommended waiting times for a diagnostic assessment (NHS England, 2023). The assessment process is often described as being stressful, frustrating and emotionally exhausting for parents (Crane et al., 2016). To date research has primarily focused on the experiences of parents when their child has received a diagnosis (see Legg & Tickle, 2019 for a review). However, in order to develop effective and efficient services that meet service users’ needs, it is important to understand the experiences of all parents, including those whose children do not receive an autism diagnosis following assessment. To the author’s knowledge, only one study has previously focused on this (Bendik & Spicer-White, 2021).

  Therefore, the aim of the current study was to explore and understand the psychological journey for parents when their child does not receive an autism diagnosis following an autism diagnostic assessment. Seven mothers took part in individual interviews via videoconferencing. This study used Interpretative Phenomenological Analysis (a type of qualitative analysis which involves analysing participants’ responses during interviews).

  Analysis of the interviews revealed four themes: (1) Noticing Difficulties/Differences: “[I’m] just desperately wanting to help her and help her understand it all”, (2) Is My Child Autistic?: “[Autism] was just an answer as to why [he] is as he is ... the diagnosis, it would open more doors”, (3) Pointless Professionals: “I thought, ‘Oh they [professionals] know everything’ and now I don’t think that quite so much” and (4) Disappointing (Non)Diagnosis: “We can’t just go, ‘Okay, she hasn’t got autism’, there’s got to be something we can do”.
  These findings highlight the need for improved transparency and communication from professionals and services throughout the assessment process. Clear explanation of diagnostic decision-making is also needed and parents need to be provided with a way of understanding their child’s needs in the absence of this diagnosis. This could be provided through psychological formulation. Support which is led by the needs of the child also needs to be an option for families. Thank you to the participants who took part in this study and to the expert-by-experience who provided input into the creation of the interview schedule.

• REC name

  East Midlands - Leicester Central Research Ethics Committee

• REC reference

  22/EM/0220

• Date of REC Opinion

  14 Oct 2022

• REC opinion

  Favourable Opinion