“We Have to Try to Find a Way, a Clinical Bridge” - autistic adults' experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis

Brede, Janina; Cage, Eilidh; Trott, Joseph; Palmer, Lisa; Smith, Anika; Serpell, Lucy; Mandy, William; Russell, Ailsa

doi:10.1016/j.cpr.2022.102131

Cited by 48 publications

(44 citation statements)

References 95 publications

(78 reference statements)

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“…At face value, access to a wider range of treatment options for autistic women with an ED could be viewed as better treatment provision. This is particularly as a holistic approach and collaboration across services has been reported to being positively received by autistic individuals in ED and other mental health settings (Babb et al., 2021; Brede et al., 2022). However, it could also reflect the narrative reported by autistic individuals with EDs and those supporting them (Babb et al., 2021) that autistic individuals are ‘too complex’, resulting in these individuals being passed around different healthcare settings and ED treatment types.…”

Section: Discussionmentioning

confidence: 99%

A comparison of the eating disorder service experiences of autistic and non‐autistic women in the UK

Babb

Brede²,

Jones

et al. 2022

Euro Eating Disorders Rev

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Objective: Qualitative studies report that autistic women have poor experiences when being treated for an eating disorder (ED) and express that ED services are not appropriately tailored to meet their needs. It is unclear whether their experience differs to other women accessing ED services. The aim of the current study was to compare autistic and non-autistic women's ED illness history and experiences in ED services. Method: An online survey about ED illness history and their experience with ED treatment was completed by 46 autistic women with a restrictive ED and 110 non-autistic women with a restrictive ED.Results: Despite some similarities, there were three key differences in the experiences reported by autistic and non-autistic women. First, autistic women reported a longer duration of ED and being diagnosed with an ED at a younger age than non-autistic women. Second, autistic women reported accessing a broader range of healthcare settings and ED treatments than nonautistic women when being treated for an ED. Finally, autistic women rated their experiences of inpatient care, dietetic input, and cognitive behavioural therapy (CBT) as significantly less beneficial than non-autistic women when being treated for an ED. Conclusion: These findings increase understanding of autistic women's ED experience and can help to shape ED services and treatments to better accommodate the needs of their autistic clients.

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Section: Discussionmentioning

confidence: 99%

A comparison of the eating disorder service experiences of autistic and non‐autistic women in the UK

Babb

Brede²,

Jones

et al. 2022

Euro Eating Disorders Rev

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“…Accessing appropriate support from mental health services can be a critical step towards addressing mental health difficulties in autistic people. Dissatisfaction with care (9), high levels of unmet needs (10), and harmful effects (11) suggest that mental health services do not currently provide sufficient support for many autistic individuals with co-occurring mental health difficulties. This can erode trust in services and prevent help-seeking in the future (11).…”

Section: Introductionmentioning

confidence: 99%

Approaches to improving mental health care for autistic people: a systematic review

Loizou

Pemovska

Stefanidou

et al. 2023

Preprint

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Background: Autistic people have a high likelihood of developing mental health difficulties but a low chance of receiving effective mental health care. Therefore, there is a need to identify and examine strategies to improve mental health care for autistic people. Aims: To identify strategies that have been implemented to improve access, experiences of care and mental health outcomes for autistic adults and examine evidence on their acceptability, feasibility and effectiveness. Method: A co-produced systematic review was conducted. MEDLINE, PsycINFO, CINHAL, medRxiv and PsyArXiv were searched. We included all study designs reporting acceptability or feasibility outcomes and empirical quantitative study designs reporting effectiveness outcomes. Data were synthesised using a narrative approach. Results: A total of 29 articles were identified. These included 16 studies of adapted mental health interventions, seven studies of service improvements and six studies of bespoke mental health interventions developed for autistic people. There was no conclusive evidence on effectiveness. However, most bespoke and adapted approaches appeared to be feasible and acceptable. Identified adaptations appeared to be acceptable and feasible, including increasing knowledge and detection of autism, providing environmental adjustments and communication accommodations, accommodating individual differences, and modifying the structure and content of interventions. Conclusion: Many identified strategies are feasible and acceptable and can be readily implemented in services with the potential to make mental health care more suitable for autistic people, but important research gaps remain. Future research should address these and investigate a co-produced package of service improvement measures.

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“…A recent systematic review and meta-synthesis [ 42 ] explored autistic adults’ mental health service experience, triangulating the perspectives of autistic adults, clinicians, and parents. The collection of qualitative studies synthesized that autistic adults’ experience in current service systems is predominantly negative, with autistic adults facing several barriers when accessing and engaging with support for mental health difficulties.…”

Section: Resultsmentioning

confidence: 99%

Building Bricks of Integrated Care Pathway for Autism Spectrum Disorder: A Systematic Review

Fulceri

Gila

Caruso

et al. 2023

IJMS

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An integrated plan within a defined care pathway for the diagnosis, continuative interventions, and periodic redefinition of care of autistic people is essential for better outcomes. Challenges include delivering services across all domains or life stages and effective coordination between health/social care providers and services. Further, in the ‘real world’, service provision varies greatly, and in many settings is significantly weighted towards diagnosis and children’s services rather than treatment and support or adult care. This study aims to identify existing care pathways for Autism Spectrum Disorder (ASD) from referral to care management after diagnosis. The study reviewed the international literature in PubMed and PsycInfo databases and collected information on care for autistic individuals from the Autism Spectrum Disorders in Europe (ASDEU) project partners. The study found that published data mainly focused on specific components of care pathways rather than an integrated and coordinated plan of care and legislative indications. They should be aimed at facilitating access to the services for support and the inclusiveness of autistic individuals. Given the need for care addressing the complex and heterogeneous nature of ASD, effective coordination between different health/social care providers and services is essential. It is also suggested that research priority should be given to the identification of an integrated care pathway ‘model’ centered around case management, individualization, facilitation, support, continuous training and updating, and quality management.

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“We Have to Try to Find a Way, a Clinical Bridge” - autistic adults' experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis

Cited by 48 publications

References 95 publications

A comparison of the eating disorder service experiences of autistic and non‐autistic women in the UK

A comparison of the eating disorder service experiences of autistic and non‐autistic women in the UK

Approaches to improving mental health care for autistic people: a systematic review

Building Bricks of Integrated Care Pathway for Autism Spectrum Disorder: A Systematic Review

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