Experiences of the ASD Assessment when a diagnosis is not received
Research type
Research Study
Full title
Parents experiences of the Autistic Spectrum Disorder assessment process when the child did not receive a diagnosis.
IRAS ID
201170
Contact name
Lesley-Anne Bendik
Contact email
Sponsor organisation
Bangor University
Duration of Study in the UK
1 years, 2 months, 29 days
Research summary
Autistic Spectrum Disorder (ASD) is a life long neurological developmental disorder. The process of obtaining this diagnosis for a child can be a difficult and emotional time for parents (Reed & Osborne, 2012). The majority of the previous research in this area has looked at parent’s experiences of the ASD assessment process, when the outcome has confirmed that their child or young person does meet the criteria for this diagnosis. Such research has reflected the relief that parent’s experience upon receiving a correct diagnosis, as this is often considered to be the key to achieving a level of acceptance and understanding of their child’s emotional, behavioural and communication difficulties and most importantly access the appropriate support (Midence & O’Neill, 1999). However, there is very limited research on the experience of parents who go through the same assessment process, which can be lengthy and frustrating (Howlin & Moore, 1997), but for who their child’s difficulties do not meet the diagnostic criteria and thus do not receive a diagnosis.
The aim of the present study is to explore the experience of parents/guardians whose child is assessed for ASD in a Child and Adolescent Mental Health Service in North Wales but who do not receive a diagnosis. To gain a true understanding of the lived experience of this group of individuals, the research will adopt a qualitative approach, whereby the participants will be asked to share their experiences in an interview with the researcher.
It is hoped that the outcome of this research will help clinicians understand how best they can support families through the assessment process. It is also hoped that the research will inform services of how to improve their approach to providing good quality information and provide guidelines on how best to communicate a non-diagnosis to family members.
REC name
Wales REC 5
REC reference
16/WA/0164
Date of REC Opinion
19 Jun 2016
REC opinion
Further Information Favourable Opinion