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How Families Make Sense of Their Child’s Behaviour When on an Autism Assessment and Diagnosis Waiting List

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Abstract

Families waiting for an Autism Spectrum Condition assessment often experience difficulties explaining, or making sense of, the referred young person’s behaviour. Little is known about this sense making, or how clinicians might support this ambiguity. This paper explored finite details of how five families do ‘sense-making’ in conversations with each other, while on the waiting list for an ASC assessment. A Discursive Psychology analysis of these conversations found that sense making was affected by (1) an interactional pattern of interruptions impeding the progress of sense making narratives; (2) face saving to maintain positive identities and shared understanding; and (3) difficulties in word finding within sense making narratives. These practices challenged the production of a coherent family sense making narrative.

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Notes

  1. Currently in the UK a number of children who had previously been given a diagnostic label of ASC without a multiple assessment approach by a multi-disciplinary team are being re-assessed in line with the NICE (2011) guidelines, if there is a query about the diagnosis by parents or professionals.

  2. When a speaker initiates repair in their own talk to re-establish progressivity.

  3. A topic of difficulty, characterised by repairs.

  4. A less favourable turn, turns that are against what is expected or a turn that is contentious. These are characterised by delays and hedges in speech.

  5. An exit device at the end of a completed turn which enables another speaker to take a turn (e.g. ‘we’ve looked up about it, haven’t we?’).

  6. An extended silence between two speakers, at a place where a speaker could commence a turn.

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Acknowledgments

This research was completed as part of a Doctorate in Clinical Psychology for the lead author with no additional funding received. I would like to thank all the families who took part and shared their stories. I am also extremely grateful to the parents who I consulted to guide this project and their openness and honesty. I would like to acknowledge Sarah Holland for the amount of work she put into recruiting families. I would also like to thank Rebecca McKenzie, Olivia Fakoussa, Alicia Smith and Nicole Parish for their time spent reading drafts.

Authors’ Contribution

KD conceived of the study, participated in its design and coordination, recruited and interviewed participants, completed the analysis and drafted the manuscript; CS participated in the design, interpretation of analysis and helped draft the manuscript; RD participated in the design of the study and helped draft the manuscript, PL assisted with conceiving the study and participated in its design and coordination of recruitment. All authors read and approved the final manuscript.

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Authors and Affiliations

  1. Clinical Psychology, Plymouth University, Rolle Building, Drake Circus, Plymouth, Devon, PL4 8AA, UK

    Katie Denman, Cordet Smart & Rudi Dallos

  2. Virgin Care Children’s Integrated Services, Lescaze Offices, Shinners Bridge, Dartington, Devon, TQ9 6JE, UK

    Paula Levett

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  1. Katie Denman
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  2. Cordet Smart
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Correspondence to Katie Denman.

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Denman, K., Smart, C., Dallos, R. et al. How Families Make Sense of Their Child’s Behaviour When on an Autism Assessment and Diagnosis Waiting List. J Autism Dev Disord 46, 3408–3423 (2016). https://doi.org/10.1007/s10803-016-2873-7

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