Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA)

Arnold, Samuel R. C.; Foley, Kitty‐Rose; Hwang, Ye In; Richdale, Amanda L.; Uljarević, Mirko; Lawson, Lauren P.; Cai, Ru Ying; Falkmer, Torbjörn; Falkmer, Marita; Lennox, Nick; Urbanowicz, Anna; Trollor, Julian N.

doi:10.1136/bmjopen-2019-030798

Cited by 46 publications

(46 citation statements)

References 105 publications

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“…Demographic information on participants per group can be found in Table 1 . The majority of adults with autism in our sample were female (68%), which is in disproportion with diagnostic rates [ 37 ], but common in large online studies (e.g., [ 38 – 40 ]). The larger part of the participants were residents of Belgium.…”

Section: Resultsmentioning

confidence: 99%

The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries

2021

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Background Previous studies have reported a negative psychological and mental health impact of the COVID-19 pandemic. This impact is likely to be stronger for people with autism as they are at heightened risk of mental health problems and because the pandemic directly affects social functioning and everyday routines. We therefore examined COVID-19 pandemic-related changes in mental health, the impact of the pandemic on their social life and routines, satisfaction with pandemic-related information and tips, and participants’ wishes for guidance. Methods We used a mixed-method approach, collecting quantitative and qualitative survey data from adults with and without autism across three European countries: Belgium, the Netherlands, and the UK (N = 1044). Results We found an increase in depression and anxiety symptoms in response to the pandemic for both the non-autism and the autism group, which was greater for adults with autism. Furthermore, adults with autism showed a greater increase in worries about their pets, work, getting medication and food, and their own safety/security. They felt more relieved from social stress, yet experienced the loss of social contact as difficult. Adults with autism also felt more stressed about the loss of routines. Pleasant changes noted by adults with autism were the increase in solidarity and reduced sensory and social overload. Adults with autism frequently reported problems with cancellation of guidance due to the pandemic and expressed their wish for (more) autism-specific information and advice. Limitations Our sample is likely to reflect some degree of selection bias, and longitudinal studies are needed to determine long-term effects. Conclusions Results highlight the psychological burden of the pandemic on adults with autism and shed light on how to support them during this COVID-19 pandemic, which is especially important now that the pandemic is likely to have a prolonged course. There is a need for accessible, affordable (continued) support from health services. Guidance may focus on the maintenance of a social network, and adjusting routines to the rapid ongoing changes. Finally, we may learn from the COVID-19 pandemic-related changes experienced as pleasant by adults with autism to build a more autism-friendly society post-pandemic.

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Section: Resultsmentioning

confidence: 99%

The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries

2021

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“…The majority of adults with autism in our sample were female (68%), which is in disproportion with diagnostic rates (31), but common in large online studies (e.g. (32)(33)(34)). The larger part of the participants were residents of Belgium.…”

Section: Demographicsmentioning

confidence: 90%

The Psychological Impact of the COVID-19 Pandemic on Adults With Autism: A Survey Study Across Three Countries

Oomen

Nijhof

Wiersema

2020

Preprint

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BackgroundPrevious studies have reported a negative psychological and mental health impact of the COVID-19 pandemic. This impact is likely to be stronger for people with autism as they are at heightened risk of mental health problems and because the pandemic directly affects social functioning and everyday routines. We therefore examined COVID-19-related changes in mental health, the impact of the pandemic on their social life and routines, satisfaction with pandemic-related information and tips, and participants’ wishes for guidance. MethodsWe used a mixed-method approach, collecting quantitative and qualitative survey data from adults with and without autism across three European countries: Belgium, the Netherlands, and the United Kingdom (N = 1044). ResultsWe found an increase in depression and anxiety symptoms in response to the pandemic for both the non-autism and the autism group, which was greater for adults with autism. Furthermore, adults with autism showed a greater increase in worries about their pets, work, getting medication and food, and their own safety/security. They felt more relieved from social stress, yet experienced the loss of social contact as difficult. Adults with autism also felt more stressed about the loss of routines. Pleasant changes noted by adults with autism were the increase in solidarity and reduced sensory and social overload. Adults with autism frequently reported problems with cancellation of guidance due to the pandemic and expressed their wish for (more) autism-specific information and advice. LimitationsOur sample is likely to reflect some degree of selection bias, and longitudinal studies are needed to determine long-term effects. ConclusionsResults highlight the psychological burden of the pandemic on adults with autism and shed light on how to support them during this COVID-19 pandemic, which is especially important now that the pandemic is likely to have a prolonged course. There is a need for accessible, affordable (continued) support from health services. Guidance may focus on the maintenance of a social network, and adjusting routines to the rapid ongoing changes. Finally, we may learn from the COVID-19-related changes experienced as pleasant by adults with autism to build a more autism-friendly society post-pandemic.

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“…ALSAA was similarly designed to follow autistic and non-autistic individuals aged from 25 years at baseline, and 2 years after baseline. 46 To allow the lifespan to be examined, questions and questionnaires across the two studies were designed, where possible, to be compatible. Both studies are conducted online by using Qualtrics ª. Longitudinal data collection is ongoing for both studies, and ALSAA has a rolling baseline.…”

Section: Methodsmentioning

confidence: 99%

“…On average, autistic participants also had poorer sleep quality scores and it took them longer to fall asleep than nonautistic participants. Autistic participants in early adulthood (20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35)(36)(37)(38)(39) and middle age (40)(41)(42)(43)(44)(45)(46)(47)(48)(49)(50)(51)(52)(53)(54)(55)(56)(57)(58)(59) had poorer sleep quality and took longer to fall asleep than non-autistic adults of the same age. There were no differences between autistic and non-autistic adolescents (15)(16)(17)(18)(19) or older adults (60+).…”

mentioning

confidence: 99%

Sleep Quality in Autism from Adolescence to Old Age

Jovevska

Richdale

Lawson

et al. 2020

Autism in Adulthood

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Background: Sleep problems are common in autism from early childhood. Although research suggests that poor sleep continues at least into early middle age, the pattern of sleep problems has rarely been characterized beyond childhood. The aim of this study was to examine sleep quality from adolescence to old age in autistic individuals as compared with age-matched non-autistic comparison groups from the general population. Methods: Participants ranged from 15 to 80 years; there were 297 participants in the autistic group (mean [M] age = 34.36 years, standard deviation [SD] = 15.24), and the comparison group had 233 participants (M age = 33.01 years, SD = 15.53). Sleep quality, sleep onset latency (SoL), total night sleep, and sleep efficiency as measured by Pittsburgh Sleep Quality Index were compared between groups and across age groups (15-19, 20-39, 40-59, 60+ years). Five predictors of sleep quality (autistic traits, mental health condition, medication, employment, and sex) were also examined. Results: Overall, problematic sleep was more common for the autistic participants (63.7%) than the comparison group (46.4%), and autistic participants had poorer sleep quality and longer SoL (all p < 0.001). In early adulthood and middle age, autistic adults had significantly poorer sleep quality and longer SoL than similar age comparison group adults; autistic and comparison group adolescents and the elderly did not differ. In the autistic group, predictors accounted for 21% of sleep quality variance. Sex ( p < 0.001) was the strongest predictor, with all predictors except employment contributing unique variance. In the comparison group, predictors accounted for 25% of the variance in sleep quality. The strongest predictor was mental health condition ( p < 0.001), with all predictors except sex contributing unique variance. Conclusions: Autistic adolescents and adults, particularly females, remain vulnerable to sleep problems, with early and middle adulthood being at times of particular risk. Targeted sleep interventions are required.

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Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA)

Cited by 46 publications

References 105 publications

The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries

The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries

The Psychological Impact of the COVID-19 Pandemic on Adults With Autism: A Survey Study Across Three Countries

Sleep Quality in Autism from Adolescence to Old Age

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