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“You’ve actually got two patients, you haven’t got one”: parent-informed criteria for evaluating the autism assessment process

Daisy Grace Burden

Advances in Autism

ISSN: 2056-3868

Article publication date: 17 January 2024

Issue publication date: 13 February 2024

255

Abstract

Purpose

Parents whose children have undergone an autism assessment often describe the process as extremely stressful. This affects how parents engage with services post-diagnosis, meaning less likelihood of using subsequent service support despite struggling to cope. Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al. 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families’ needs can be better met during the assessment process.

Design/methodology/approach

In this qualitative study, the author conducted semi-structured interviews with 11 parents whose child had undergone an autism assessment in the last five years. Thematic analysis determined key themes.

Findings

The six themes were: clarity and communication, access to support and resources, aftercare, recognition of parent concerns, personalisation of the assessment process and concerns around the use of personal protective equipment/online assessments. These themes led to criteria to assess the quality of autism assessment services in line with parent perspectives.

Practical implications

These parent-informed criteria could facilitate the consideration of parents’ views into service evaluations of autism assessment services across the UK.

Originality/value

Previous research indicates that the autism assessment experience is often extremely stressful and overwhelming for families (Crane et al., 2016). Despite this, guidance to improve autism services rarely prioritises the opinions and experiences of service-users and their families. The criteria presented here were derived from themes identified by interviewing parents on their experiences of the autism assessment process, thus shifting the focus onto service-users.

Keywords

Acknowledgements

Since submission of this article, the following author has updated their affiliation: Daisy Grace Burden is at the University of Oxford, Oxford, England.

Citation

Burden, D.G. (2024), "“You’ve actually got two patients, you haven’t got one”: parent-informed criteria for evaluating the autism assessment process", Advances in Autism, Vol. 10 No. 1, pp. 12-24. https://doi.org/10.1108/AIA-02-2023-0008

Publisher

:

Emerald Publishing Limited

Copyright © 2023, Emerald Publishing Limited

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