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Mothers’ Experiences of Accessing Mental Health Care for their Child with an Autism Spectrum Disorder

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Abstract

Objectives

Despite the recognition that a high proportion of individuals with an Autism Spectrum Disorder (ASD) will also reach the diagnostic threshold for at least one other mental health condition, many families struggle to access the appropriate mental health support. This study aimed to systematically explore the lived experiences of raising a child with an Autism Spectrum Disorder (ASD) and comorbid mental health condition and describes their attempts to access support via mental health services in the UK.

Methods

Seven mothers of children aged between 11 to 15 years with ASD and who were referred for mental health issues, took part in semi-structured interviews. Interpretative Phenomenological Analysis (IPA) of the transcribed interviews revealed gaps and inconsistencies within the process of gaining access to mental health services, in addition to the impact it had on the mothers’ own mental health.

Results

The themes generated were psychological impact on caregiver; negative experience accessing mental health services, and breakdown in relationships with professionals. Managing the impact of their child’s mental health condition, including suicidal ideation and self-harm, alongside their child’s neurological condition, commonly led to feelings of isolation, self-blame, guilt and powerlessness; impacting on the mother’s own mental health.

Conclusions

The themes emphasised the importance of ensuring appropriate referrals are made, enhancing the therapeutic alliance with both the child and parent during the referral process, and in providing continuity of care.

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Authors and Affiliations

  1. School of Psychology and Sports Sciences, University of Hertfordshire, College Lane, Hatfield, AL10 9AB, UK

    Laura Jackson, Saskia Keville & Amanda K. Ludlow

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  1. Laura Jackson
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  2. Saskia Keville
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  3. Amanda K. Ludlow
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Contributions

LJ: collaborated in the design and executed the study, analysed the data, wrote the results and collaborated in the writing of the study: SK: collaborated with the design and in the writing of the paper and editing of the final manuscript. AL: collaborated with the design and writing of the paper and editing of the final manuscript.

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Correspondence to Amanda K. Ludlow.

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The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study. Ethical approval was granted for the study by The University of Hertfordshire Social Sciences, Arts and Humanities Ethics Committee with Delegated Authority. UH protocol number: LMS/PGT/UH/03293/.

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Jackson, L., Keville, S. & Ludlow, A.K. Mothers’ Experiences of Accessing Mental Health Care for their Child with an Autism Spectrum Disorder. J Child Fam Stud 29, 534–545 (2020). https://doi.org/10.1007/s10826-019-01662-8

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