The experiences of autistic adults during the COVID-19 pandemic in the UK and implications for autism services development

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Abstract

Purpose

COVID-19 has been challenging for many in the UK. This is no different to many with autism spectrum disorder. Based on the experiences and issues raised by a small group of autistic women in an ongoing support group, consideration if this holds true for the wider adult autistic community across further lockdowns and restrictions to public life was explored.

Design/methodology/approach

An online questionnaire was created based on the issues raised. Participants indicated the degree to which they agreed or disagreed with each statement.

Findings

Autistic adults experienced an increase in anxiety and poor mental health, which in turn has exacerbated autistic features, such as rigidity. The data indicates that autistic adults can adapt to change provided there is support in maintaining routines.

Research limitations/implications

The research is limited due to the small number of participants (N = 120), as well as national variations in service provision.

Practical implications

Our data raises wider questions about the nature of support for autistic adults without cognitive impairments during times of crises and how services can respond and may even be shaped in the future to provide support that is cost-effective and relevant to autistic adults.

Social implications

To ensure that services have an awareness of how crises impact on autistic adults and how relatively simple changes may avert poor mental health.

Originality/value

That the creation of local support networks, and the ability to access these, is a key feature of autism-specific support.

Related collections

Most cited references 12

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Mental health before and during the COVID-19 pandemic: a longitudinal probability sample survey of the UK population

Matthias Pierce, Holly F Hope, Tamsin Ford … (2021)

Summary Background The potential impact of the COVID-19 pandemic on population mental health is of increasing global concern. We examine changes in adult mental health in the UK population before and during the lockdown. Methods In this secondary analysis of a national, longitudinal cohort study, households that took part in Waves 8 or 9 of the UK Household Longitudinal Study (UKHLS) panel, including all members aged 16 or older in April, 2020, were invited to complete the COVID-19 web survey on April 23–30, 2020. Participants who were unable to make an informed decision as a result of incapacity, or who had unknown postal addresses or addresses abroad were excluded. Mental health was assessed using the 12-item General Health Questionnaire (GHQ-12). Repeated cross-sectional analyses were done to examine temporal trends. Fixed-effects regression models were fitted to identify within-person change compared with preceding trends. Findings Waves 6–9 of the UKHLS had 53 351 participants. Eligible participants for the COVID-19 web survey were from households that took part in Waves 8 or 9, and 17 452 (41·2%) of 42 330 eligible people participated in the web survey. Population prevalence of clinically significant levels of mental distress rose from 18·9% (95% CI 17·8–20·0) in 2018–19 to 27·3% (26·3–28·2) in April, 2020, one month into UK lockdown. Mean GHQ-12 score also increased over this time, from 11·5 (95% CI 11·3–11·6) in 2018–19, to 12·6 (12·5–12·8) in April, 2020. This was 0·48 (95% CI 0·07–0·90) points higher than expected when accounting for previous upward trends between 2014 and 2018. Comparing GHQ-12 scores within individuals, adjusting for time trends and significant predictors of change, increases were greatest in 18–24-year-olds (2·69 points, 95% CI 1·89–3·48), 25–34-year-olds (1·57, 0·96–2·18), women (0·92, 0·50–1·35), and people living with young children (1·45, 0·79–2·12). People employed before the pandemic also averaged a notable increase in GHQ-12 score (0·63, 95% CI 0·20–1·06). Interpretation By late April, 2020, mental health in the UK had deteriorated compared with pre-COVID-19 trends. Policies emphasising the needs of women, young people, and those with preschool aged children are likely to play an important part in preventing future mental illness. Funding None.

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Psychosocial and Behavioral Impact of COVID-19 in Autism Spectrum Disorder: An Online Parent Survey

Marco Colizzi, Elena Sironi, Federico Antonini … (2020)

The 2019 coronavirus disease (COVID-19) outbreak could result in higher levels of psychological distress, especially among people suffering from pre-existing mental health conditions. Young individuals with autism spectrum disorders (ASD) are particularly at risk due to their vulnerability to unpredictable and complex changes. This study aimed to investigate the impact of the COVID-19 pandemic on ASD individuals, whether any pre-pandemic sociodemographic or clinical characteristics would predict a negative outcome, and to narratively characterize their needs. Parents and guardians of ASD individuals filled out an online survey consisting of 40 questions investigating socio-demographic and clinical characteristics of their children, impact of the COVID-19 outbreak on their wellbeing and needs to deal with the emergency. Data were available on 527 survey participants. The COVID-19 emergency resulted in a challenging period for 93.9% of families, increased difficulties in managing daily activities, especially free time (78.1%) and structured activities (75.7%), and, respectively, 35.5% and 41.5% of children presenting with more intense and more frequent behavior problems. Behavior problems predating the COVID-19 outbreak predicted a higher risk of more intense (odds ratio (OR) = 2.16, 95% confidence interval (CI) 1.42–3.29) and more frequent (OR = 1.67, 95% CI 1.13–2.48) disruptive behavior. Even though ASD children were receiving different types of support, also requiring specialist (19.1%) or emergency (1.5%) interventions in a relatively low proportion of cases, a number of needs emerged, including receiving more healthcare support (47.4%), especially in-home support (29.9%), as well as interventions to tackle a potentially disruptive quarantine (16.8%). The COVID-19 outbreak has undoubtedly resulted in increased difficulties among ASD individuals.

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Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder

Anne G. Lever, Hilde M Geurts (2016)

Although psychiatric problems are less prevalent in old age within the general population, it is largely unknown whether this extends to individuals with autism spectrum disorders (ASD). We examined psychiatric symptoms and disorders in young, middle-aged, and older adults with and without ASD (Nmax = 344, age 19–79 years, IQ > 80). Albeit comparable to other psychiatric patients, levels of symptoms and psychological distress were high over the adult lifespan; 79 % met criteria for a psychiatric disorder at least once in their lives. Depression and anxiety were most common. However, older adults less often met criteria for any psychiatric diagnosis and, specifically, social phobia than younger adults. Hence, despite marked psychological distress, psychiatric problems are also less prevalent in older aged individuals with ASD. Electronic supplementary material The online version of this article (doi:10.1007/s10803-016-2722-8) contains supplementary material, which is available to authorized users.

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All references

Author and article information

Contributors

Riese Bettina :

Bio :

Bettina Riese is based at the Department of Neurodevelopmental Services, Surrey and Borders Partnership NHS Foundation Trust, Epsom, UK

Mukherjee Raja A.S. :

Bio :

Raja A.S. Mukherjee is based at the Department of Adult Neurodevelopmental Services (plural), Surrey and Borders Partnership NHS Foundation Trust, Epsom, UK

Journal

Journal ID (publisher): AIA

Journal ID (doi): 10.1108/AIA

Title: Advances in Autism

Abbreviated Title: AIA

Publisher: Emerald Publishing

ISSN: 2056-3868

Publication date (Electronic, pub): 15 November 2021

Publication date (Print, pub): 13 October 2022

Volume: 8

Issue: 4

Pages: 343-353

Affiliations

[1]Department of Neurodevelopmental Services, Surrey and Borders Partnership NHS Foundation Trust, Epsom, UK

[2]Department of Adult Neurodevelopmental Services (plural), Surrey and Borders Partnership NHS Foundation Trust, Epsom, UK

Author notes

Bettina Riese can be contacted at: Bettina.Riese-Stott@sabp.nhs.uk

Article

Publisher ID: 675869 Original-pdf ID: AIA-06-2021-0026.pdf Filename ID: AIA-06-2021-0026

DOI: 10.1108/AIA-06-2021-0026

SO-VID: fc1fc4f6-9598-4248-988b-4374341e08ef

History

Date received : 05 June 2021

Date: 18 October 2021

Date accepted : 21 October 2021

Page count

Figures: 2, Tables: 4, Equations: 0, References: 12, Pages: 1, Words: 5965

Custom metadata

deliverables Web-ready article package

peer-reviewed Yes

academic-content Yes

EContentType JOURNAL

rightslink included

ScienceOpen disciplines: Health & Social care

Keywords: COVID-19,Experience,Autistic adults,ASD,Autism,Survey

Data availability: