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Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder

Lookup NU author(s): Emerita Professor Helen McConachie, Professor Ann Le Couteur, Deborah Garland, Professor Jeremy Parr

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).

Abstract

© 2017 The Author(s) Evaluation of interventions for children with autism spectrum disorder (ASD) is hampered by the multitude of outcomes measured and tools used. Measurement in research with young children tends to focus on core impairments in ASD. We conducted a systematic review of qualitative studies of what matters to parents. Parent advisory groups completed structured activities to explore their perceptions of the relative importance of a wide range of outcome constructs. Their highest ranked outcomes impacted directly on everyday life and functioning (anxiety, distress, hypersensitivity, sleep problems, happiness, relationships with brothers and sisters, and parent stress). Collaboration between professionals, researchers and parents/carers is required to determine an agreed core set of outcomes to use across evaluation research.

Publication metadata

Author(s): McConachie H, Livingstone N, Morris C, Beresford B, Le Couteur A, Gringras P, Garland D, Jones G, Macdonald G, Williams K, Parr JR

Publication type: Article

Publication status: Published

Journal: Journal of Autism and Developmental Disorders

Year: 2018

Volume: 48

Issue: 4

Pages: 1041-1051

Print publication date: 01/04/2018

Online publication date: 31/08/2017

Acceptance date: 02/04/2016

Date deposited: 26/09/2017

ISSN (print): 0162-3257

ISSN (electronic): 1573-3432

Publisher: Springer New York LLC

URL: https://doi.org/10.1007/s10803-017-3282-2

DOI: 10.1007/s10803-017-3282-2

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