Autism should be considered in the assessment and delivery of mental health services for children and young people

Hanlon, Claire; Ashworth, Emma; Moore, David; Donaghy, Bethany; Saini, Pooja

doi:10.1080/09687599.2022.2099252

Cited by 7 publications

(5 citation statements)

References 8 publications

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“…There is a debate in the literature regarding the use of measures originally developed for neurotypical populations and then applied with neurodiverse populations (e.g., Hanlon et al, 2022;Mandy, 2022). Some feel that this underserves the autistic community, and downplays the complex presentation of MH symptoms in individuals who are neurodiverse, which may lead to more misdiagnosis of MH symptoms (Halvorsen et al, in press;Hanlon et al, 2022). The evidence from this present review, indicates that primary use of instruments developed for ASD/IDD people (e.g., the ABC, DBC, EDI, and PAC) should be given priority in initial MH assessments.…”

Section: Discussionmentioning

confidence: 99%

Applicability and Psychometric Properties of General Mental Health Assessment Tools in Autistic People: A Systematic Review

Halvorsen,

Kildahl,

Kaiser

et al. 2024

J Autism Dev Disord

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In recent years, there has been a proliferation of instruments for assessing mental health (MH) among autistic people. This study aimed to review the psychometric properties of broadband instruments used to assess MH problems among autistic people. In accordance with the PRISMA guidelines (PROSPERO: CRD42022316571) we searched the APA PsycINFO via Ovid, Ovid MEDLINE, Ovid Embase and the Web of Science via Clarivate databases from 1980 to March 2022, with an updated search in January 2024, to identify very recent empirical studies. Independent reviewers evaluated the titles and abstracts of the retrieved records (n = 11,577) and full-text articles (n = 1000). Data were extracted from eligible studies, and the quality of the included papers was appraised. In all, 164empirical articles reporting on 35 instruments were included. The review showed variable evidence of reliability and validity of the various instruments. Among the instruments reported in more than one study, the Aberrant Behavior Checklist had consistently good or excellent psychometric evidence. The reliability and validity of other instruments, including: the Developmental Behavior Checklist, Emotion Dysregulation Inventory, Eyberg Child Behavior Inventory, Autism Spectrum Disorder-Comorbid for Children Scale, and Psychopathology in Autism Checklist, were less documented. There is a need for a greater evidence-base for MH assessment tools for autistic people.

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Section: Discussionmentioning

confidence: 99%

Applicability and Psychometric Properties of General Mental Health Assessment Tools in Autistic People: A Systematic Review

Halvorsen,

Kildahl,

Kaiser

et al. 2024

J Autism Dev Disord

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“…Service models typically focus on 'impairments' or deficits, delivering interventions that respond to difficulties rather than building strengths. 7 Such neuro-disorder approaches fail to address the impact of a hostile world on autistic wellbeing, and distract staff working with autistic CYP from adopting a neuro-inclusive framework of care. 15 Ultimately, autistic CYP often do not receive the mental health support they need.…”

Section: (Which Was Not Certified By Peer Review)mentioning

confidence: 99%

“…Consequently, autistic CYP are overrepresented in mental health services, with 10% of all CYP using CAMHS thought to be autistic. 6 Despite this, neurotypical strategies in the assessment of and intervention for autistic CYP’s mental health needs continue to dominate, with disregard for the potential harms of imposing a neurotypical agenda upon them 7 . Indeed, recent findings 8 indicated that CAMHS was not considered by parents to be accessible for many autistic CYP, and there are concerns that autistic CYP’s mental health needs are often overlooked in assessments, as symptoms are conflated with traits relating to their autism, a phenomenon known as diagnostic overshadowing 9 .…”

Section: Introductionmentioning

confidence: 99%

“…Additionally, symptoms commonly associated with anxiety and depression, such as avoidance, loss of motivation, and sleep disturbance may not be expressed in the same way as in neurotypical individuals, and may be related to autistic-specific experiences such as autistic inertia and/or burnout. 7 Reports also suggest that CAMHS staff frequently do not feel they have the knowledge or skills to identify and support mental ill health in autistic CYP, and therapists have highlighted concerns over a lack of training. 10 Thus, autistic CYP experiencing mental ill health are often not assessed or supported effectively, resulting in them reaching crisis.…”

Section: Introductionmentioning

confidence: 99%

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Accumulating harm and waiting for crisis: Parents perspectives of accessing Child and Adolescent Mental Health Services for their autistic child experiencing mental health difficulties

Ashworth,

Bray,

Hanlon

et al. 2024

Preprint

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Background Autistic children and young people are at increased risk of mental health difficulties, but often face barriers when seeking help from Child and Adolescent Mental Health Services (CAMHS). There is limited literature exploring the accessibility of CAMHS for autistic young people, particularly from parents perspectives. The present study aimed to 1) explore the experiences of parents/carers seeking help from CAMHS for their autistic childs mental health difficulties, and 2) gain parents perceptions of the accessibility of CAMHS support for their child and understand what could be improved. Methods A mixed-methods survey design was used to learn from parents/carers. 300 parents/carers took part from across the UK between June and October 2023. Quantitative data were analysed using descriptive statistics, and qualitative data using qualitative content analysis. Results Findings demonstrated the ongoing struggles that parents/carers faced when seeking professional help from CAMHS for their child. Many were not referred to CAMHS or were rejected without an assessment, often due to issues relating to diagnostic overshadowing, a high threshold for assessment, or a lack of professional knowledge about autism and care pathways. Those who were referred reported a lack of reasonable adjustments and offers of ineffective or inappropriate therapies, leaving young people unable to engage, and thus not benefiting. Ultimately, parents felt their childs mental health difficulties either did not improve or declined to the point of crisis. However, there was a recognition that some professionals were kind and compassionate, and provided the validation that parents needed. Conclusions There is a need for a more neuro-inclusive and personalised approach in CAMHS, from the professionals themselves, in the adjustments that are offered, and in the therapies that are provided. Further research, funding, and training are urgently needed to ensure mental health support is accessible, timely, and effective for autistic CYP.

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“…Research has revealed that barriers faced by autistic individuals in accessing healthcare include challenges with health anxiety, communication under stress, and a lack of autism awareness in staff ( Hampton et al, 2022 ). Autistic populations are also at greater risk of contact with health services due to co-occurring mental and physical health conditions ( Donaghy et al, 2022 ; Hanlon et al, 2022 ).…”

mentioning

confidence: 99%

Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent–maternal dyadic study

Jordan,

Parchment,

Gauntlett-Gilbert

et al. 2024

Journal of Pediatric Psychology

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Objective Sensory elements are core features in chronic pain and autism, yet knowledge of the pain experience in autistic adolescents is limited. Little is known regarding how autistic adolescents experience chronic pain, manage their pain and perceive psychological treatment for their chronic pain. Methods Ten autistic adolescents (6 female, 3 male, and 1 self-identified as agender) with chronic pain and their mothers (n = 10) participated in semistructured interviews concerning their perceptions of living with chronic pain. Participants were recruited from U.K. pain management services. According to preference, interviews were conducted individually (n = 10) or dyadically (n = 10 participants across 5 dyads). Data were analyzed using inductive reflexive thematic analysis. Results Two themes were generated. Theme 1, “overstimulated and striving for control” described how adolescents’ experience of heightened sensitivity enhanced adolescents’ levels of anxiety and subsequent pain, illustrating a reciprocal relationship between anxiety, pain, and sensory elements. Theme 2, “not everyone fits the mold” captured how autistic adolescents positioned themselves as distinct from others due to the unique nature of being autistic and living with pain. This sense of difference negatively impacted adolescents’ ability to engage with and benefit from the standard treatment for chronic pain. Conclusions Findings suggest that autistic adolescents living with pain experience pain and face barriers to effective pain treatment. Our results identify the need for educational resources to facilitate clinicians to better understand the experience of autistic adolescents living with pain. In turn, such understanding may improve treatment and outcomes in this population.

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Autism should be considered in the assessment and delivery of mental health services for children and young people

Cited by 7 publications

References 8 publications

Applicability and Psychometric Properties of General Mental Health Assessment Tools in Autistic People: A Systematic Review

Applicability and Psychometric Properties of General Mental Health Assessment Tools in Autistic People: A Systematic Review

Accumulating harm and waiting for crisis: Parents perspectives of accessing Child and Adolescent Mental Health Services for their autistic child experiencing mental health difficulties

Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent–maternal dyadic study

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