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

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.