A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults

Mason, David; Ingham, Barry; Urbanowicz, Anna; Michael, Cos; Birtles, Heather; Woodbury‐Smith, Marc; Brown, Toni; James, Ian A.; Scarlett, Clare; Nicolaidis, Christina; Parr, Jeremy

doi:10.1007/s10803-019-04049-2

Cited by 189 publications

(222 citation statements)

References 47 publications

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“…It is suggested that the constant demands of 'fitting-in" to a non-autism world; the stress of "camouflaging" to avoid being perceived as different [60] and the absence of appropriately structured support or daily activities all contribute to high levels of stress, anxiety, and depression. Physical problems and chronic health disorders are also more common than in the general population [74,75] and recent studies highlight the risk of premature mortality [76][77][78]. Premature mortality is particularly high in autistic adults with intellectual disability and epilepsy.…”

Section: Prognosis In Autismmentioning

confidence: 99%

“…However, due to symptom overlap, diagnostic overshadowing and atypical symptom presentation, assessment, diagnosis, and treatment of co-occurring conditions in autism are complex and challenging [55]. Although individuals with autism should be provided with appropriate medical treatments for all co-occurring medical conditions, it is increasingly apparent that many experience significant difficulties in accessing medical care [77,148]. To promote better physical and mental health and reduce the risk of premature death, systems of care must recognise and adapt to the needs of autistic people, as should be done with any vulnerable group in society.…”

Section: Treatments For Co-occurring Conditionsmentioning

confidence: 99%

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ESCAP practice guidance for autism: a summary of evidence-based recommendations for diagnosis and treatment

Fuentes

Hervás

Howlin

2020

Eur Child Adolesc Psychiatry

111

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Across Europe, there is increased awareness of the frequency and importance of autism spectrum disorder (ASD), which is now recognised not only as a childhood disorder but as a heterogeneous, neurodevelopmental condition that persists throughout life. Services for individuals with autism and their families vary widely, but in most European countries, provision is limited. In 2018, European Society of Child and Adolescent Psychiatry (ESCAP) identified the need for a Practice Guidance document that would help to improve knowledge and practice, especially for individuals in underserviced areas. The present document, prepared by the ASD Working Party and endorsed by the ESCAP Board on October 3, 2019, summarises current information on autism and focuses on ways of detecting, diagnosing, and treating this condition.

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Section: Prognosis In Autismmentioning

confidence: 99%

Section: Treatments For Co-occurring Conditionsmentioning

confidence: 99%

ESCAP practice guidance for autism: a summary of evidence-based recommendations for diagnosis and treatment

Fuentes

Hervás

Howlin

2020

Eur Child Adolesc Psychiatry

111

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“…Our participatory approach and collaboration processes are described in detail elsewhere. Nicolaidis et al, 2019;Nicolaidis et al, 2011;Nicolaidis et al, 2020; Setting, Participants, and Recruitment…”

Section: Academic Community Partnershipmentioning

confidence: 99%

Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale

Nicolaidis

Schnider

Lee

et al. 2020

Autism

Self Cite

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Our objective was to develop a measure of healthcare providers’ self-efficacy in providing healthcare to autistic adults and to better understand their training needs. We used a community-based participatory research approach with academic researchers, autistic adults, supporters, and healthcare providers. We developed a one-page questionnaire which included the new 6-item self-efficacy scale, two items on how challenging and rewarding it is to provide care to autistic adults, and seven items on provider characteristics. We surveyed 143 healthcare providers from eight primary care clinics in Oregon and California, United States. Preliminary psychometric testing found the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Adult Autism Healthcare Provider Self-Efficacy Scale to have good internal consistency reliability (Cronbach’s alpha 0.87) and consist of a single factor. A priori hypothesis testing found correlations in the expected directions. Only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients and identify and make accommodations. Lay abstract The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers’ confidence (or “self-efficacy”) in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers’ training needs most effectively.

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“…These barriers include: communication difficulties, which can lead to misunderstandings by healthcare providers and reduced involvement of patients in healthcare decision making; sensory sensitivities (e.g. around physical examinations); difficulties identifying and/ or describing pains and symptoms and inconsistent specialist clinician training, awareness and knowledge about autism and ID (13)(14)(15)(16). Health providers may also misattribute COVID-19 symptoms to existing medical, mental health or behavioural problems ('diagnostic overshadowing'), increasing risk for severe disease due to missed or late diagnosis (17).…”

Section: Introductionmentioning

confidence: 99%

COVID-19 health and social care access for autistic people and individuals with intellectual disability: A European policy review.

Oakley¹,

Tillmann²,

Ruigrok³

et al. 2020

Preprint

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Background: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some groups, including autistic people/ those with intellectual disability (ID), may become excluded from services. Methods: We reviewed policies from 15 European member states, published March-July 2020, pertaining to: 1) accessibility of COVID-19 testing; 2) provisions for treatment, hospitalisation and intensive care units (ICU); and 3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1,301 autistic people and caregivers.Results: Autistic people/ those with ID experienced significant barriers accessing COVID-19 services. First, despite these groups being at elevated risk for severe illness due to co-morbid health conditions, there was a lack of access to COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible - predominantly resulting from individual differences in communication needs. Third, ICU triage protocols (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Last, interruptions to standard health and social care left over 70% of autistic people without everyday support.Conclusions: The COVID-19 pandemic has further emphasised healthcare inequalities for autistic people/ those with ID, likely contributing to disproportionate increases in morbidity and mortality in these groups. Current policies and guidelines regarding the accessibility of COVID-19 services require urgent revision to prevent the widespread exclusion of autistic people and those with ID from services, which represents a violation of international human rights law.

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A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults

Cited by 189 publications

References 47 publications

ESCAP practice guidance for autism: a summary of evidence-based recommendations for diagnosis and treatment

ESCAP practice guidance for autism: a summary of evidence-based recommendations for diagnosis and treatment

Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale

COVID-19 health and social care access for autistic people and individuals with intellectual disability: A European policy review.

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