Factors associated with mental health symptoms among UK autistic children and young people and their parents during the COVID-19 pandemic.

doi:10.21203/rs.3.rs-1993442/v1

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Research Article

Factors associated with mental health symptoms among UK autistic children and young people and their parents during the COVID-19 pandemic.

https://doi.org/10.21203/rs.3.rs-1993442/v1

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Objective: The current study examined the mental health symptoms of autistic children and young people and their parents during the COVID-19 pandemic in two pre-existing well-characterised cohorts. We explored whether child, family or environmental factors were associated with child and parental mental health symptoms during the pandemic.

Method: Participants were parents/carers of autistic children in the ASTAR (N=67, Mage 9 years) and QUEST (N=112, Mage 17 years) cohorts. Early in the UK pandemic, parents completed a brief online survey developed specifically to measure the impacts of the COVID-19 pandemic that asked about child and parental mental health, infection experience, and changes to education arrangements, family life, housing and finances.

Results: More engagement and enjoyment in education provision and going outside was associated with better child and parental mental health. Multivariate multiple linear regression models were used to test the associations between child, family and environmental factors and pandemic-time mental health symptoms. Amongst pre-adolescent autistic children, pre-existing ADHD was a key factor associated with more behavioural/ADHD symptoms during the pandemic. Higher pre-existing parental mental health problems was also associated with more parental mental health symptoms during the pandemic. Financial concerns were also a risk factor for worse parental mental health during the pandemic.

Conclusions: Knowledge of pre-existing mental health and pandemic-related stressors may help care planning. Encouraging engagement and enjoyment in education and promoting physical exercise are important intervention targets. Ensuring access to ADHD medication and support is important, especially if this is managed jointly across school and home.

COVID-19 pandemic

mental health

autism

children and young people

parents

Impact of the COVID-19 pandemic on children and young people

The COVID-19 pandemic has had widespread impact for society worldwide. Three key vulnerable groups are children and young people (CYP) and families affected by school closures, those with pre-existing mental health symptoms and individuals with neurodevelopmental disorders or learning difficulties[1-3]. A systematic review of literature investigating mental health problems during restrictions in CYP found that between 31-42% had emotional problems, irritability or attention deficit hyperactivity disorder (ADHD) symptoms, and in 79% of children their behaviour/psychological state was negatively affected. Findings from the Co-SPACE study, a large-scale general population longitudinal study tracking the trajectories of mental health problems of CYP aged 4- to 16-years in the UK, has reported poorer child mental health during the early phases of the pandemic when schools were closed and strict social restrictions applied[4,5]. This was particularly true for pre-adolescents (4- to 10-year-olds) where probable caseness for emotional problems, conduct problems and ADHD increased by 10%, 35% and 20% respectively and was greater in girls than boys. Amongst adolescents, there was no significant changes in the proportion meeting caseness for these symptom domains. Findings from England's Mental Health of Children and Young People (MHCYP) survey, a large nationally representative cohort, also indicate an increase in incidence of mental health problems from 10.8% in 2017 to 16.0% during the pandemic amongst 5-16 year olds[6]. This increase held across age, gender and ethnic group.

Autistic CYP are particularly at risk for negative impacts of the pandemic for several reasons[7]. First, autistic CYP, of which about half have an intellectual disability (ID)[8], already have much higher rates of mental health problems when compared to neurotypical children[9,10]. Before the pandemic, as many as 80-90% of autistic CYP had a co-occurring psychiatric diagnosis, the most common being an anxiety disorder, ADHD, or oppositional defiant disorder (ODD). Second, 10-15% display challenging behaviours that mean they cannot attend mainstream schools and participate in family and community life in the usual ways[11]. Third, intolerance to uncertainty has been suggested as a causal model for why anxiety is heightened amongst autistic individuals[12,13]. During the pandemic and associated restrictions, uncertainty about all aspects of daily life was commonplace and the requirement to adapt routines, especially with school closures, may lead to increases in mental health symptoms and place strain on family relationships[14,15]. Lastly, autistic CYP may be disproportionately disadvantaged by the impacts of the lockdowns due an increased reliance of community and school-based services for treatment (i.e., therapies) and enrichment (i.e., extra-curricular activities)[7,16] and social care.

However, findings from studies exploring the mental health of CYP with neurodevelopmental disorders during the pandemic present a varied picture. For example, the Co-SPACE study showed children with special educational needs (SEN) or neurodevelopmental disorders to have markedly elevated levels of emotional problems, conduct problems and ADHD during the pandemic, compared to those without SEN or neurodevelopmental problems[5]; but since the study did not include a measure of pre-pandemic symptoms it is not clear whether this difference is related to the pandemic or simply a reflection of pre-existing symptoms. Looking at change over time, Co-SPACE found a slight decrease in parent-reported emotional, conduct and ADHD symptoms in SEN CYP over the first UK lockdown; whereas a slight increase in these symptoms was observed amongst CYP without SEN. Another study, comparing mental health problems in CYP with intellectual disability during the pandemic found similar levels of problems before the pandemic[17]. Finally, and of particular relevance to the current study, are the findings from a US clinical sample of autistic children showing a worsening in mental health and/or development of new mental health problems among 59% of their sample during the pandemic[3]. Risks for worsening in mental health included the child’s understanding of COVID-19, low family income and greater pandemic-time parental distress[3].

Impact of the COVID-19 pandemic on parents/carers

The findings from studies exploring the mental health of parents during the pandemic also are mixed. A systematic review of literature reporting mental health problems in parents/carers of CYP reported that 52% had anxiety and 27% had depression during the pandemic[18]. In Co-SPACE, a significant rise in family-related stress early in the pandemic was found[19], with parental anxiety, stress and depression surpassing levels seen early in the pandemic when restrictions were re-introduced in November 2020[20]. Parents of autistic CYP are particularly vulnerable as they already had higher levels of parenting stress than parents of children with other developmental disabilities and those without neurodevelopmental difficulties[21], and there is an association between greater parenting stress and child mental health problems[22]. In Co-SPACE, parents of SEN children were more likely to report that they could not meet the demands of both their child and their work during the pandemic than those of children without SEN[20]. A systematic review of literature on the mental health of parents of autistic CYP demonstrated increases in parental anxiety and stress and difficulties coping[23]. One study found that when compared to parents of non-autistic children, parents of autistic CYP reported higher levels of overall psychological distress and more feelings of panic when thinking about the pandemic[24]. Amongst UK parents of SEN children, a study found that most parents reported changes in mental health related to social restrictions, many felt overwhelmed and only a minority reported there was little impact on mental health in their family[25]. When comparing pre-pandemic parental psychological distress to distress during the pandemic, Bailey et al.[17] found that UK parents with children with an intellectual disability reported similar levels of parental psychological distress at both timepoints. Another study comparing carers of autistic and non-autistic individuals did not find significant differences in mental health symptoms during the pandemic between these groups[26]. However, other research has reported much greater levels of anxiety and depression during the pandemic amongst carers of children with an intellectual disability when compared to parents of children without intellectual disability[27]. Risk factors for worse parental mental health during the pandemic have included lower pre-pandemic family income and more pandemic-related stressors (e.g., loss of occupation)[28].

Research objectives

Research conducted with CYP with neurodevelopmental disorders has mainly surveyed or tracked CYP since the pandemic began. Whilst this provides essential information about the current mental health of this population and how it has changed over the course of the pandemic, the lack of systematically selected samples means that there is limited understanding of participant representativeness, and the lack of pre-pandemic measures of mental health symptoms does not allow for comparisons to symptoms during the pandemic or identification or risk and protective factors. Further research examining who is most at risk for negative impacts of the pandemic based on pre-existing factors and lockdown circumstances is needed. Such information is essential to understand whether there are sub-groups who may be more adversely affected and may in turn be used to guide future care planning and pandemic response.

The aim of this current study was to 1) examine the mental health symptoms of autistic CYP during the UK pandemic, and 2) explore whether mental health experienced during the pandemic was associated with pre-existing child, family or environmental characteristics. We included samples of both pre-adolescent and adolescent CYP to examine impact across the developmental period. Both samples were originally recruited from a similar geographical area and tracked over time as part of the wider programme Improving Autism Mental Health (IAMHealth) and hence policies around education and social restrictions will have been similar for both cohorts. Comparing the cohorts in this way, enabled us to look at the commonalities and differences that apply to autistic CYP at two important developmental stages during the pandemic.

We hypothesised that greater autism severity, pre-existing mental health and behavioural symptoms and environmental stressors would be associated with increased mental health symptoms during the pandemic amongst both pre-adolescent and adolescent CYP. For parents, we hypothesised that those with CYP with more pre-existing mental health symptoms, those who had more pre-existing parental mental health symptoms and those with pandemic-related environmental stressors would report more of parental mental health symptoms during the pandemic.

Sample and procedure

The current study consists of two samples of autistic CYP drawn from the South London area. Data collection for the current study was conducted early in the pandemic. Pre-existing measures were taken pre-pandemic. Figure 1 displays the data collection timeline and COVID-19 related events. Further information on the two samples is provided in Table 1, and recruitment of the samples in the Supplementary Materials.

ASTAR cohort (enrolled in a feasibility pilot randomised controlled trial)

The Autism Spectrum Treatment and Resilience (ASTAR) cohort consisted of 85 parents of young autistic children who consented to participate in a feasibility study or pilot randomised controlled trial of novel group-based parent-mediations interventions (ISRCTN91411078), as part of IAMHealth[29]. All parents from the ASTAR cohort who had consented to future research contact and had a valid email address (N=82/85, 96%) were invited to participate in the current study via email (June–September 2020; see Figure 1). The invite included a link to a secure online platform giving families access to the study information sheet, consent form and the COVID survey (described below). Researchers followed up non-responding families via phone. The current study was reviewed and given ethical approval from the Psychiatry, Nursing and Midwifery Research Ethics Subcommittee at King's College London (REMAS ref: 19146, ethical clearance ref: HR-19/20-19146). Informed consent was collected from all participating families.

The sample participating in the current study consisted of 67 parents (92.5% mothers) of autistic children. Most children were male (83.6%) and were on average 8 years 10 months (range 6:0 to 11:10) during the pandemic-time data collection. Thirty-five (52.2%) children were minimally verbal and 32 (47.8%) were verbal, as verbal ability was stratified for in the original study design. The children were split across specialist (42.4%) and mainstream (57.6%) education provision when originally assessed.

QUEST cohort

All parents/carers from the QUEST cohort[30] who had consented to future research contact and had a valid email address (N=211) were invited to participate in the current study. In previous waves of data collection for the QUEST cohort, children were split into an ‘intensively studied’ (hereafter intensive) and ‘extensively studied’ group (hereafter extensive). The intensive group completed in-depth assessments (including direct observations of the CYP) whereas the extensive group completed shorter online parent-report questionnaires only. For the current study, families were approached and data was collected in the same manner as described above for the ASTAR cohort. All parents/carers completed the same measures, with data collection taking place between July and October 2020 (see Figure 1). Ethical approval was granted by Camden and King’s Cross Research Ethics Committee for the current study (ref: 20/LO/0625). Informed consent was collected from all participating families.

From the 211 contacted, 112 (53%) parents/carers (95.5% mothers) participated. 79% of their CYP were male; 37% had an IQ<70 when assessed pre-pandemic; and 49% were in specialist education at the last point of data collection approximately 18 months prior to the pandemic.

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Measures

COVID survey

The European Child & Adolescent Psychopharmacology Network (ECNP) Child and Adolescent Mental Health Services (CAMHS) COVID survey was designed to tap into a broad range of mental health symptoms experienced during the pandemic and contextual factors particularly pertinent to periods of social restrictions. Questions from the CRISIS mental health survey[31] were used to inform the questions about mental health, which focussed on symptoms in the past two weeks. The questionnaire also asked about COVID-19 infection in the child, nuclear and wider family, and the child and parents’ worry about becoming infected. Contextual factors included information on parental stress, parent-child relationships, parental partner relationships, employment and financial stress, adequacy of the home environment and educational provision.

Factor analysis of this measure using a larger dataset collected from CYP in South London and Maudsley (SLaM) CAMHS (manuscript in preparation) led us to adopt a two-factor solution for both CYP and parent mental health symptoms, which performed well (see Supplementary Materials for loadings for the current sample). The questions on the child’s emotional and behavioural symptoms formed two factors, 1) Emotional symptoms (6 items measuring general worry, anxiety, sadness, loneliness, enjoyment of usual activities, and tiredness each on a 5-point scale), and 2) Behavioural/ADHD symptoms (4 items measuring irritability/anger, aggressiveness, restlessness and concentration on a 5-point scale). The questions on parental emotional and behavioural symptoms formed two factors, 1) Emotional symptoms (measured using the same 6 items), and 2) Irritable behaviour (3 items measuring irritability/anger, restlessness and concentration on a 5-point scale).

A range of other measures collected in the ASTAR and QUEST cohorts at earlier timepoints were used to explore the relationship between pre-existing vulnerabilities and the additional stressors of COVID-19 on CYP and parental mental health. These are listed in Supplementary Table 3, and assessed the constructs as described below.

Autism symptomatology

The Social Communication Questionnaire[32] was completed by parents in the ASTAR (Lifetime version) and QUEST (Current version) cohorts. SCQ total scores were generated, as well as domain scores for Social Communication and Interaction impairment (SCI) and for Restricted and Repetitive Behaviour (RRB) as recommended by Evans et al.[33], with higher scores indicating more symptoms. The Autism Diagnostic Observation Schedule – 2[34] was used with CYP in both ASTAR and QUEST (intensives only), as a direct observation of autism symptomatology. Calibrated severity scores (CSS), which take into account age and language level[35], were calculated for the Social Affect (SA) and Restricted and Repetitive Behaviour (RRB) domains.

Adaptive functioning

The Adaptive Behaviour Assessment System (ABAS) was used as a parent-report measure of adaptive functioning in ASTAR[36] and QUEST[37]. The ABAS asks parents for information about their child’s skills across a range of domains, and these domain scores are then used to generate a general adaptive composite (GAC) score with higher scores reflecting higher ability levels. In the QUEST cohort, the intensive sample completed the full ABAS, while the extensive sample completed items from the Communication domain only. Scores for the other eight skill domains were calculated using multiple imputation, and these were used along with the Communication score to generate the GAC score for the QUEST extensives (see Supplementary Material for further information on the multiple imputation technique used to generate ABAS GAC scores for the extensives).

Pre-existing CYP Mental Health Problems

In the ASTAR cohort, pre-existing parent-reported CYP mental health and behavioural symptoms were measured using the: 1) Preschool Anxiety Scale – Revised[38], a 28-item measure which taps into specific fears, and generalised, social and separation anxiety, 2) Aberrant Behaviour Checklist – Hyperactivity subscale[39], 16 items measuring hyperactivity and impulsivity, and 3) Home Situations Questionnaire-Autism Spectrum Disorders[40], a 24 item autism-specific measure of the severity of child non-compliance in everyday situations; with higher scores on all measures indicating more emotional problems, ADHD and disruptive behaviour respectively.

In the QUEST cohort, pre-existing CYP mental health and behavioural symptoms were measured using the Strengths and Difficulties Questionnaire[41]. The SDQ comprises 25 items from which a total score and five subscales are derived, with higher scores indicating more problems. In the current study, the Emotional Symptoms, Hyperactivity-Inattention and Conduct Problems subscales were used as measures of prior emotional problems, ADHD and disruptive behaviour respectively.

Pre-existing Parental Distress

The Autism Parenting Stress Index[42] was used in ASTAR to measure pre-existing parenting stress. The APSI consists of 13 items assessing family stress related to autism symptoms and co-morbid problems, with higher scores indicting greater parenting stress. The Kessler Psychological Distress Scale[43] was used in QUEST to measure pre-existing parental psychological distress. The K-10 includes 10 questions about cognitive, behavioural, emotional and psychophysiological symptoms, with higher scores indicating a higher a level of psychological distress.

Statistical analysis

Data analysis was conducted in Stata MP 16/17[44]. All variables were assessed for normality. Multivariate multiple linear regression was used to test the associations between the child, family and environmental factors and mental health symptoms during the pandemic. As shared constructs were measured in both cohorts, we followed a similar analytic approach in both samples but conducted the analysis separately for ASTAR and QUEST.

The bi-variate associations between the independent and dependent variables were first examined (See Supplementary Table 4). Variables that were significant at p<.05 in either cohort were entered into a multivariate multiple regression model, using structural equation modelling with full information maximum likelihood. This analysis was chosen in order to generate standardised coefficients for comparison across the samples and deal with missing data. In the models examining CYP symptoms, the dependent variables were CYP emotional symptoms or CYP behavioural/ADHD symptoms (as measured by the COVID survey). Independent variables included: CYP age, level of adaptive functioning, autism symptomatology (as measured by the SCQ and ADOS), pre-existing CYP mental health problems, pre-existing parental distress, and the family’s current financial situation, home accommodation, access to garden and CYP physical attendance at school/college. In addition to these, level of adaptive functioning and autism symptoms (ADOS SA and RRB CCS) were retained as co-variates to account for CYP ability levels and autism severity, even if they weren’t significant predictors at the bi-variate level.

In the models examining parent symptoms, again any variables with a significant bi-variate association with any pandemic-time outcome at p<.05 were entered into a multivariate multiple regression. The dependent variables were: parent emotional symptoms or parent irritable behaviour (as measured by the COVID survey). The independent variables were the same as those specified in the CYP outcome models above.

Attrition

For both cohorts there were no significant differences between participants and non-participants with regard to child and parent characteristics, with exception of parental unemployment being more common among QUEST non-participants vs. participants (see Supplementary Material for further information).

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Impact of the pandemic on family life

Exposure to the coronavirus disease was low in both samples in the two weeks prior to survey completion (see Table 3 for rates of infection). Access to education was restricted for the majority of CYP in ASTAR and QUEST during the initial lockdown: only 13% of CYP in ASTAR and in QUEST experienced no change. Just half (53%) of the 6–11 year-olds in ASTAR and only a quarter (25%) of the 15–20 year-olds in QUEST were attending their school/college/apprenticeship placement in person, either on a part-time or full-time basis; but this was not associated with either CYP or parent mental health symptoms during the pandemic in either sample (see Supplementary Table 4). However, less engagement and enjoyment in education was associated with more CYP emotional symptoms in ASTAR, more behavioural/ADHD symptoms in the CYP in both samples and more parental emotional symptoms in QUEST. A large proportion of CYP in ASTAR and QUEST were going outside their home less than once a week (28% and 21% respectively), with less time outside associated with greater mental health symptoms in adolescents and their parents. Parents’ working patterns also changed (see Table 3), for example, with a significant proportion of parents furloughed (12% in ASTAR, 20% in QUEST; see Figure 1 for definition of furlough).

Factors associated with CYP mental health symptoms during the pandemic

Figure 2 shows the standardised coefficients for factors associated with CYP mental health symptoms during the pandemic in both cohorts (see Supplementary Table 5 for details of the standardised coefficients and p values). Consistent across cohorts, lower pre-existing ADOS RRB CSS was associated with more behavioural/ADHD symptoms during the pandemic in both ASTAR and QUEST. However, lower pre-existing SCQ SCI scores were associated with more CYP emotional symptoms in ASTAR during the pandemic consistent with the ADOS RRB CSS association; whereas, the opposite pattern was found in QUEST and was inconsistent with the relationship found between ADOS scores and CYP mental health symptoms during the pandemic. Furthermore, in ASTAR, lower pre-pandemic adaptive functioning and increased pre-existing CYP ADHD behaviours was also associated with greater CYP behavioural/ADHD symptoms during the pandemic; in QUEST higher levels of pre-existing parental distress was additionally associated with more pandemic-time behavioural/ADHD symptoms in the CYP. In neither sample was pre-existing CYP emotional symptoms associated with pandemic-time emotional symptoms, although more pre-existing ADHD was associated with greater emotional symptoms in QUEST during the pandemic.

Factors associated with parental mental health symptoms during the pandemic

Figure 2 also shows the standardised coefficients of factors associated with parental mental health symptoms in both cohorts (see Supplementary Table 6 for details of the standardised coefficients and p values). Consistent across both ASTAR and QUEST, greater pre-existing parental distress was associated with increased parent emotional symptoms and increased parent irritable behaviour during the pandemic. For QUEST only, increased financial concerns during the pandemic was also associated with increased parent emotional symptoms and irritable behaviour during the pandemic. In ASTAR, lower pre-existing ADOS SA CSS in the children were associated with greater pandemic-time parental emotional symptoms. Whereas, no child factors were associated with parental mental health symptoms during the pandemic amongst the QUEST cohort.

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The current study examined the mental health symptoms of autistic CYP and their parents during the pandemic and explored whether any child, family or environmental factors were associated with pandemic-time mental health symptoms. We utilised previously studied cohorts of both pre-adolescent and adolescent CYP to examine the impact of pre-existing vulnerabilities across childhood.

Experience of the first UK lockdown

For almost all families, the experience of the pandemic during data collection had been one of severe restriction. A large proportion of both pre-adolescent and adolescent CYP did not access education as they usually would, even though it was UK policy that CYP with SEN (defined in the policy as someone with an Education Health and Care plan) should have access to their usual educational placement[45]. We found no significant association between school attendance and CYP or parental mental health, but given that some autistic CYP find school very stressful[46], it is possible that school closures may have had a positive impact on mental health for some and negative for others, cancelling each other out. This is in line with longitudinal research from Australia that showed school lockdowns were not associated with changes in mental health or feelings of loneliness for CYP with neurodevelopmental conditions[47]. However, lower engagement and enjoyment in education (remote or in-person) was associated with more CYP (in both ASTAR QUEST) and parental mental health (in QUEST only) symptoms. These relationships are consistent with the SLaM CAMHS study which focused on CYP with a variety of mental health problems (in preparation). While we do not know whether this is a pandemic-related or more general phenomenon, or indeed the direction of the relationship, it suggests that in more general terms there could be additional benefits (i.e., improved CYP and parental mental health) to any efforts that aim to improve autistic CYP’s engagement and enjoyment in education (or vice versa). In addition, many CYP were rarely getting outside and this was associated with more mental health symptoms among the adolescent sample and their parents. While not getting outside was viewed as an impact of the pandemic, again this finding may not be a pandemic-specific phenomenon and supports the more general recommendation that encouraging CYP to engage in physical activity[48] and leave the house could be beneficial to both theirs and their parents’ mental health. In addition, a significant proportion of parents were furloughed from work, which may have had both positive (due to more time at home) and negative (loss of earnings, uncertainty about the future) impacts on mental health. In contrast to the clear impacts on everyday life, exposure to the conoravirus disease itself within both cohorts was minimal even though cases were high in the UK at the time and there was a very high level of concern (although case rates were lower than subsequent disease waves), with very few pre-adolescent or adolescent CYP, or their family members reporting suspected or positive COVID-19 cases.

Factors associated with CYP mental health symptoms during the pandemic

For pre-adolescent autistic CYP, higher levels of pre-existing ADHD symptoms were associated with higher levels of behavioural/ADHD symptoms during the pandemic, perhaps simply highlighting the stability of symptoms within this domain over time[49]. This was also found in QUEST, but only at the bivariate level, where other factors were not controlled for. Of note, amongst both pre-adolescent and adolescent CYP, pre-existing emotional problems was not associated with pandemic-time emotional symptoms. One explanation could be that any pre-existing anxiety around school was reduced during the pandemic because of school closures, but different factors that are not well identified in this study may be influencing this relationship. Another explanation could be this finding is related to the difficulties in measuring these types of problems in this population as autistic CYP often have difficulty communicating internal states[50].

In contrast to our expectation, less observed restricted and repetitive behaviours was associated with greater pandemic-time behavioural/ADHD symptoms. This was consistent across both pre-adolescent and adolescent CYP. Given the inconsistencies between this finding and the relationship between social communication and interaction impairments and CYP’s mental health during the pandemic mentioned below, caution should be taken when interpreting this results. Different from the pattern of relationships between restricted and repetitive behaviours and CYP mental health, fewer parent-reported social communication and interaction impairments were associated with more emotional symptoms in the pre-adolescent children, but fewer emotional symptoms in the adolescent children during the pandemic. This could be due to several factors: the different ages of the two cohorts; the differential impact of the pandemic on emotional wellbeing for pre-adolescents vs. adolescents; the role of school as a potential stressor for adolescents vs. pre-adolescents; the use of different versions of the measure tapping into social communication and interaction impairments which asked about different time periods for the two cohorts (lifetime impairment for ASTAR vs. current impairment for QUEST). Further, the association between social communication impairment scores and CYP emotional symptoms in the pre-adolescent sample was non-significant at the bivariate level. Future research should be undertaken to replicate these effects.

In both cohorts, few familial or environmental stressors were associated with pandemic CYP mental health symptoms, with the exception of pre-existing parental distress being associated with pandemic-time behavioural/ADHD symptoms among adolescents. This suggests that pre-existing mental health symptoms in both the child and parent are more pertinent to CYP mental health symptoms experienced during the pandemic than other environmental factors. This finding is consistent with pre-pandemic literature[22].

Factors associated with parental mental health symptoms during the pandemic

For parents of autistic CYP in our samples, more pre-existing parental distress was associated with increased pandemic-time mental health symptoms in parents of both pre-adolescent and adolescent children indicating the stability of these difficulties and vulnerability to pandemic impacts. More pandemic-time parental mental health symptoms were associated with increased financial concerns during the pandemic in parents of autistic adolescents; this relationship was replicated in the pre-adolescent cohort but only at the bivariate level when other factors weren’t controlled for. This finding is in line with the previous literature that demonstrated the impact of the pandemic on parents[23,28]. Such impacts are expected given the substantial pressure social restrictions have placed on parents to deliver home-schooling and balance work demands, along with additional physical health, mental health and financial concerns. In both cohorts, few characteristics about the CYP were associated with pandemic parental mental health symptoms.

Clinical implications

The combined findings from the two cohorts indicate that for autistic CYP and their parents, those more vulnerable to the impacts of the COVID-19 pandemic restrictions may have had heightened mental health symptoms pre-pandemic. This highlights the need for services to consider autistic CYP and their families’ pre-existing mental health symptoms when, for example, prioritising access (e.g., in the instance of another public health crisis or if resources are limited for other reasons). This study also highlights the link between mental health and autistic CYP engagement with/enjoyment in education. Going forward, it will be important for schools to ensure that structures are in place to allow autistic CYP to engage in meaningful and enjoyable activities, whether these are delivered remotely or in-person. Further, clinicians wishing to build on existing mental health interventions for autistic CYP (particularly adolescents) may wish to incorporate opportunities for participation in activities (including physical exercise) outside of the home, for example drawing on the growing evidence base for adaptive cognitive-behavioural therapies[51].

Limitations

The survey used to assess the impact of the COVID-19 pandemic on CYP and their parents is not a standardised measure. This means that we cannot compare the levels of mental health symptoms among our samples with other samples or the population. In addition, measures of pre-existing mental health symptoms varied across the cohorts and over time. We therefore cannot make conclusions about whether mental health symptoms changed as a result of the pandemic and associated restrictions. In addition, the survey only provides a snapshot of experience as it asks about the two weeks prior to survey completion and data was collected during the early phases of the pandemic. We do not know the prolonged impact of the restrictions or impacts when restrictions were re-imposed in the UK. However, there is growing recognition that referrals to CAMHS and evidence of increased CYP distress becoming apparent after the period of this survey completion[52].

This study used two well-characterised pre-existing cohorts to examine the effects of the UK pandemic on autistic children and parental mental health. The inclusion of these two cohorts, one a community sample and the other a sample involved in a feasibility pilot randomised controlled trial with few eligibility criteria drawn from similar geographical areas enables us to understand what factors are consistently associated with mental health symptoms during the pandemic across pre-adolescent and adolescent CYP and their families. In summary, autistic CYP and their parents with greater pre-pandemic mental health symptoms are likely to be more at risk of having more pandemic-time mental health symptoms. This information should be used to guide care planning for autistic CYP and their families.

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Table 1. ASTAR and QUEST Sample Characteristics

	ASTAR (N=67)	QUEST (N=112)
% of contacted sample participating	82% participated	53% participated
Mean age in years (SD), range	8.8 (1.49), 6.0 – 11.8	17.9 (1.15), 15.9 – 20.1
Sex: N (%) male	56 (84%) male	89 (79%) male
Ethnicity: N (%) white	34 (52%) white^a	59 (54%) white
School type: Mainstream: n (%) and special education	38 (58%) mainstream, 28 (42%) special education^a	48 (51%) mainstream, 46 (49%) special education
Mean ABAS GAC (SD), range	61.2 (12.6), 45 – 100^a	60.6 (29.2), 23 – 105
Mean SCQ (SD), range	23.8 (6.87), 9 – 34^a	17.6 (6.68), 3 – 35^c
Mean SCQ SCI (SD), range	15.3 (5.5), 4 – 25^a	10.9 (5.1), 1 – 21^c
Mean SCQ RRB (SD), range	7.4 (2.5), 1 – 12^a	5.7 (3.1), 0 – 12^c
Mean ADOS CSS (SD), range	7.5 (1.82), 1 – 10^a	6.5 (2.72), 1 – 10^d
Mean ADOS SSA CSS (SD), range	7.9 (1.8), 1 – 10^a	7.2 (2.4), 1 – 10^d
Mean ADOS RRB CSS (SD), range	6.7 (2.4), 1 – 10^a	4.7 (3.2), 1 – 10^d

Parent/carer informant
Mother: n (%)	62 (92.5%)	107 (95.5%)
Father: n (%)	4 (6.0%)	4 (3.6%)
Grandmother: n (%)	1 (1.5%)	1 (0.9%)

Parental Education:
At least one parent with A-levels or above: n (%)	58 (87.8%)^a	64 (60%)^b

Parental Employment prior to pandemic
At least one parent in employment: n (%)	54 (81.8%)^a	79 (79%)^c

^a available on n=66

^b available on n=107

^c available on n=100

^d available on n=44

ABAS GAC = Adaptive Behaviour Assessment System General Adaptive Composite; SCQ = Social Communication Questionnaire; SCI = Social Communication and Interaction; RRB = Restricted and Repetitive Behaviours; CSS = Calibrated Severity Score

Table 2. COVID-19 impact data from ASTAR and QUEST

		ASTAR (N = 67)	QUEST (N = 112)
Exposure to COVID-19	Positive test in immediate family: N (%)	4 (6.0%)	5 (4.5%)
	CYP suspected, not tested: N (%)	2 (3.0%)	1 (0.9%)
	CYP suspected with a positive test: N (%)	0 (0.0%)	2 (1.8%)
	CYP suspected with a negative test: N (%)	1 (1.5%)	8 (7.1%)
	Death in the wider family as a result of COVID-19: N (%)	1 (1.5%)	2 (1.8%)

Parental working situation during pandemic	At least one parent furloughed due to COVID-19: N (%)	11 (16.4%)	22 (19.6%)
	At least one parent dismissed due to COVID-19: N (%)	4 (6.0%)	9 (8.0%)
	At least one parent working more hours than usual: N (%)	9 (13.4%)	7 (6.3%)
	At least one parent working less hours than usual: N (%)	7 (10.5%)	17 (15.2%)

	Level of financial concern: mean (SD), range	2.16 (0.95), 1 – 5	2.59 (0.80), 1 – 5

CYP education	CYP in person attendance at school/college at least on some days: N (%)	34 (50.8%)	13 (24.5%)^a
	CYP enjoyment in education: mean score (SD), range	3.28 (1.28), 1 – 5	2.64 (0.97), 1 – 5
	CYP engagement in education: mean score (SD), range	2.67 (1.35), 1 – 5	2.49 (1.07), 1 – 5

Home environment	Have access to personal garden/outside space: N (%)	58 (86.6%)	83 (74.8%)^b
	Cramped home environment: mean score (SD), range	1.85 (0.97), 1 – 4	2.21 (0.79), 1 – 4

CYP getting outside home for approved activities^c	CYP getting outside: mean score (SD), range	2.21 (0.99), 1 – 4	2.15 (0.78), 1 – 4

CYP mental health	CYP Emotional Symptoms Total	15.97 (4.75), 8 – 25	15.37 (4.25), 7 – 29
CYP mental health	CYP Behaviour and ADHD Symptoms Total	12.06 (3.42), 4-18	9.84 (3.35), 4 – 20

Parental mental health	Parent Emotional Symptoms Total	19.42 (4.98), 8 – 30	16.90 (3.56), 7 – 30
	Parent Irritable Behaviour Total	7.93 (2.54), 3 – 15	6.67 (2.14), 3 – 15

Note. See Supplementary Materials for more details of the measures used.

^aBased on the 53 QUEST families who completed survey prior to schools/colleges re-opening in Sept 2020.

^bAvailable on n=111

^cApproved activities during the initial lockdown included physical exercise, grocery shopping, attending medical appointments, or to go to school.

CYP = children and young people

Table 3. Bi-variate relationships between COVID-19 educational impact questions and CYP and parent mental health symptoms for ASTAR and QUEST

	ASTAR				QUEST
	CYP Emotional Symptoms	CYP Behavioural/ADHD Symptoms	Parent Emotional Symptoms	Parent Irritable Behaviour	CYP Emotional Symptoms	CYP Behavioural/ADHD Symptoms	Parent Emotional Symptoms	Parent Irritable Behaviour
	Std Coeff.	Std Coeff.	Std Coeff.	Std Coeff.	Std Coeff.	Std Coeff.	Std Coeff.	Std Coeff.
CYP COVID Impacts
Enjoyment in Education	-0.28*	-0.14	-0.04	0.08	-0.18	-0.28**	-0.26**	-0.11
Engagement in Education	-0.24*	-0.33**	-0.06	-0.18	-0.08	-0.32***	-0.39***	-0.17
Getting Outside	-0.11	-0.09	-0.34	0.01	-0.18	-0.24**	-0.37***	-0.28**
, , ** for p<.05, .01, .001

Competing interest reported. TC has received consultancy fees from F. Hoffmann-La Roche Ltd. and Servier and royalties from Sage Publications and Guilford Publications. AP has received royalties from Western Psychological Services. All other authors declare no conflicts of interest.

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Factors associated with mental health symptoms among UK autistic children and young people and their parents during the COVID-19 pandemic.

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