| Literature DB >> 35930166 |
Anke M Scheeren1, Patricia Howlin2, Liz Pellicano3, Iliana Magiati4, Sander Begeer1.
Abstract
Previous studies have suggested that autistic adults may be negatively affected by the COVID-19 pandemic and its associated restrictions. In this study, we examined continuity and change in loneliness and stress, and their predictors, in 448 autistic and 70 non-autistic adults living in the Netherlands. Autistic participants were assessed on three occasions using the de Jong Gierveld Loneliness Scale and Perceived Stress Scale (pre-lockdown (T0), first lockdown (T1), and second lockdown (T2)); non-autistic participants were assessed twice (T1 and T2). Autistic adults' loneliness and stress levels remained stable across all three time points over 8 months, but were consistently higher than those of non-autistic adults. Other predictors of higher loneliness and stress levels at the first lockdown (T1) included low perceived social support and high levels of COVID-19 related worries. Although loneliness and stress were stable at the group level, the wellbeing of some autistic adults worsened over the course of the pandemic, while others improved. For instance, adults with a mental health diagnosis (other than autism) prior to the pandemic were more likely to increase in stress over time, whereas adults with higher perceived social support were more likely to decrease in stress over time (from T1 to T2). Factors contributing to variability in outcome require further examination. Moreover, the relatively high loneliness and stress levels in autistic adults call for attention from clinicians and service providers. LAYEntities:
Keywords: COVID-19; adults; autism; loneliness; stress; wellbeing
Mesh:
Year: 2022 PMID: 35930166 PMCID: PMC9538450 DOI: 10.1002/aur.2787
Source DB: PubMed Journal: Autism Res ISSN: 1939-3806 Impact factor: 4.633
FIGURE 1Study design and timeline of COVID‐19 related restrictions in the Netherlands in 2020
Descriptive statistics (mean, SD, or n, %) of autistic and non‐autistic adults during the first lockdown (T1) in the Netherlands
| Variable | Autistic adults ( | Non‐autistic adults ( | Group difference | Effect size (Cohen's d / phi / Cramer's V) |
|---|---|---|---|---|
| Gender | 13.50 (0.001) | 0.13 | ||
| Men | 272 (40%) | 36 (24%) | ||
| Women | 406 (59%) | 113 (75%) | ||
| Other | 7 (1%) | 1 (1%) | ||
| Age | 45.87 (13.91) | 45.17 (14.47) | −0.55 (0.58) | 0.05 |
| Autistic traits (autism‐spectrum quotient) | 84.12 (10.82) | 53.19 (11.26) | −31.41 (<0.001) | 2.84 |
| Intellectual ability | 20.93 (<0.001) | 0.16 | ||
| IQ < 86 | 84 (13%) | 0 (0%) | ||
| IQ 86–115 | 125 (19%) | 33 (22%) | ||
| IQ > 115 | 455 (69%) | 115 (78%) | ||
| Prior mental health condition | 90.69 (<0.001) | −0.33 | ||
| Yes | 450 (66%) | 35 (24%) | ||
| No | 235 (34%) | 115 (77%) | ||
| Had a COVID‐19 infection | 2.31 (0.51) | 0.05 | ||
| Yes | 2 (0.3%) | 1 (1%) | ||
| Suspected | 59 (9%) | 13 (9%) | ||
| No | 501 (73%) | 116 (77%) | ||
| Unknown | 123 (18%) | 20 (13%) | ||
| Paid employment | 45.26 (<0.001) | −0.23 | ||
| Yes | 327 (48%) | 117 (78%) | ||
| No | 358 (52%) | 33 (22%) | ||
| Perceived social support (1–5) | 3.45 (1.21) | 4.05 (0.96) | 6.59 (<0.001) | 0.55 |
| Social contact (0–42) | 19.18 (8.15) | 21.88 (7.70) | 3.72 (<0.001) | 0.34 |
| COVID‐19 related worries (5–30) | 17.48 (4.91) | 16.76 (4.27) | −1.82 (0.07) | 0.16 |
IQ level was self‐reported. Specifically, 53% of the autistic adults based their self‐reported IQ on a previous IQ test score (IQ assessment took place independent of the current study), 47% estimated their IQ themselves; 42% of the self‐reported IQ data of the non‐autistic adults was based on a prior IQ test score, 58% was self‐estimated.
An autism diagnosis is not counted as a prior mental health condition.
Descriptive statistics (n, % or M, SD) of autistic and non‐autistic adults with repeated measures of loneliness and stress at T0 (pre‐lockdown), T1 (first lockdown), and T2 (second lockdown)
| T0 | T1 | T2 | |||||
|---|---|---|---|---|---|---|---|
| Variable | Autistic adults ( | Autistic adults ( | Non‐autistic adults ( | T1 Group differences | Autistic adults ( | Non‐autistic adults ( | T2 Group differences |
| Gender | 4.34 (0.11) | ||||||
| Men | 126 (42%) | 193 (43%) | 21 (30%) | ||||
| Women | 170 (57%) | 251 (56%) | 48 (69%) | ||||
| Other | 3 (1%) | 4 (1%) | 1 (1%) | ||||
| Age | 45.09 (14.06) | 46.56 (13.72) | 49.03 (14.11) | 1.40 (0.16) | |||
| Autistic traits (autism‐spectrum quotient) | 84.40 (10.92) | 84.39 (10.91) | 52.56 (10.00) | −22.93 (<0.001) | |||
| Intellectual ability | 10.55 (<0.01) | ||||||
| IQ < 86 | 37 (13%) | 55 (13%) | 0 (0%) | ||||
| IQ 86–115 | 59 (20%) | 91 (21%) | 13 (19%) | ||||
| IQ > 115 | 195 (67%) | 293 (67%) | 56 (81%) | ||||
| Prior mental health condition | 47.01 (<0.001) | ||||||
| Yes | 202 (68%) | 301 (67%) | 17 (24%) | ||||
| No | 97 (32%) | 147 (33%) | 53 (76%) | ||||
| Paid employment | 13.20 (<0.001) |
48 (69%) 22 (31%) | 11.88 (0.001) | ||||
| Yes | 209 (47%) | 49 (70%) | 208 (46%) | ||||
| No | 239 (53%) | 21 (30%) | 240 (54%) | ||||
| Perceived social support (1–5) | 3.42 (1.24) | 4.07 (0.97) | 4.99 (<0.001) | 3.32 (1.21) | 4.09 (1.14) | 5.17 (<0.001) | |
| Social contact (0–42) | 19.06 (8.20) | 20.91 (7.49) | 1.78 (0.08) | 19.78 (8.28) | 24.31 (7.03) | 4.35 (<0.001) | |
| COVID‐19 related worries (5–30) | 17.49 (5.00) | 17.03 (4.47) | −0.72 (0.47) | 18.24 (4.79) | 17.66 (4.02) | −1.10 (0.28) | |
| Loneliness (6–30) |
16.36 (5.03) | 16.65 (4.93) | 13.67 (4.16) | −4.79 (<0.001) | 16.87 (4.97) | 13.40 (4.63) | −4.46 (<0.001) |
| Perceived stress (0–40) |
19.60 (7.03) | 19.13 (7.90) | 13.87 (6.69) | −5.30 (<0.001) | 19.57 (7.60) | 13.44 (7.51) | −6.29 (<0.001) |
Note: All participants have at least participated at T1 and T2.
An ASD diagnosis is not counted as a prior mental health condition.
FIGURE 2Loneliness and stress levels at T0 (pre‐lockdown), T1 (first lockdown), and T2 (second lockdown) of autistic adults during the COVID‐19 pandemic
Multiple regression model predicting levels of self‐reported loneliness at T1 in autistic and non‐autistic adults (N = 832)
| Model | Δ |
|
|
|
|
| LB (CI) | HB (CI) |
|---|---|---|---|---|---|---|---|---|
| Model 1 |
| |||||||
| Gender (men vs. women) | 0.126 | 0.299 | 0.012 | 0.422 | 0.673 | −0.460 | 0.713 | |
| Gender (other vs. women) | 2.163 | 1.505 | 0.040 | 1.437 | 0.151 | −0.791 | 5.116 | |
| Age | −0.004 | 0.010 | −0.011 | −0.369 | 0.712 | −0.024 | 0.016 | |
| T1 Employment | −0.570 | 0.287 | −0.057 | −1.987 | 0.047 | −1.133 | −0.007 | |
| Prior mental health condition | 0.504 | 0.289 | 0.050 | 1.746 | 0.081 | −0.063 | 1.071 | |
| T1 Social support | −2.408 | 0.119 | −0.576 | −20.285 |
| −2.641 | −2.175 | |
| T1 Social contacts | −0.002 | 0.018 | −0.002 | −0.086 | 0.932 | −0.036 | 0.033 | |
| T1 COVID‐19 related worries | 0.136 | 0.029 | 0.132 | 4.719 |
| 0.080 | 0.193 | |
| Model 2 |
| |||||||
| Gender (men vs. women) | −0.046 | 0.302 | −0.004 | −0.151 | 0.880 | −0.638 | 0.547 | |
| Gender (other vs. women) | 2.186 | 1.496 | 0.040 | 1.461 | 0.144 | −0.751 | 5.124 | |
| Age | −0.003 | 0.010 | −0.007 | −0.257 | 0.797 | −0.023 | 0.017 | |
| T1 Employment | −0.422 | 0.289 | −0.042 | −1.462 | 0.144 | −0.990 | 0.145 | |
| Prior mental health condition | 0.215 | 0.301 | 0.021 | 0.716 | 0.474 | −0.375 | 0.806 | |
| T1 Social support | −2.359 | 0.119 | −0.565 | −19.823 |
| −2.593 | −2.126 | |
| T1 Social contacts | 0.001 | 0.017 | 0.001 | 0.050 | 0.960 | −0.033 | 0.035 | |
| T1 COVID‐19 related worries | 0.134 | 0.029 | 0.129 | 4.660 |
| 0.078 | 0.190 | |
| Group (autism vs. comparison) | 1.256 | 0.391 | 0.097 | 3.215 |
| 0.489 | 2.022 |
Note: Model 3 (including interaction terms) did not add explained variance over and above model 2. Significant p‐values (p < 0.006) are in bold.
Abbreviations: HB (CI), higher bound of 95% confidence interval; LB (CI), lower bound of 95% confidence interval.
Multiple regression model predicting level of experienced stress at T1 in autistic and non‐autistic adults (N = 832)
| Model | Δ |
|
|
|
|
| LB (CI) | HB (CI) |
|---|---|---|---|---|---|---|---|---|
| Model 1 |
| |||||||
| Gender (men vs. women) | −0.689 | 0.519 | −0.043 | −1.329 | 0.184 | −1.708 | 0.329 | |
| Gender (other vs. women) | 2.181 | 2.612 | 0.026 | 0.835 | 0.404 | −2.946 | 7.308 | |
| Age | −0.094 | 0.018 | −0.169 | −5.241 |
| −0.129 | −0.059 | |
| T1 Employment | −1.265 | 0.498 | −0.082 | −2.540 | 0.011 | −2.243 | −0.287 | |
| Prior mental health condition | 1.704 | 0.501 | 0.109 | 3.401 |
| 0.720 | 2.687 | |
| T1 Social support | −1.669 | 0.206 | −0.257 | −8.101 |
| −2.074 | −1.265 | |
| T1 Social contacts | 0.017 | 0.030 | 0.018 | 0.570 | 0.569 | −0.042 | 0.077 | |
| T1 COVID‐19 related worries | 0.493 | 0.050 | 0.306 | 9.823 |
| 0.394 | 0.591 | |
| Model 2 |
| |||||||
| Gender (men vs. women) | −1.216 | 0.517 | −0.076 | −2.351 | 0.019 | −2.231 | −0.201 | |
| Gender (other vs. women) | 2.254 | 2.563 | 0.027 | 0.879 | 0.379 | −2.777 | 7.284 | |
| Age | −0.090 | 0.018 | −0.163 | −5.135 |
| −0.125 | −0.056 | |
| T1 Employment | −0.813 | 0.495 | −0.052 | −1.642 | 0.101 | −1.784 | 0.159 | |
| Prior mental health condition | 0.819 | 0.515 | 0.052 | 1.589 | 0.112 | −0.192 | 1.830 | |
| T1 Social support | −1.520 | 0.204 | −0.234 | −7.456 |
| −1.920 | −1.120 | |
| T1 Social contacts | 0.025 | 0.030 | 0.026 | 0.824 | 0.410 | −0.034 | 0.083 | |
| T1 COVID‐19 related worries | 0.486 | 0.049 | 0.301 | 9.858 |
| 0.389 | 0.582 | |
| Group (autism vs. comparison) | 3.849 | 0.669 | 0.191 | 5.753 |
| 2.536 | 5.162 |
Note: Model 3 (including interaction terms) did not add explained variance over and above model 2. Significant p‐values (p < 0.006) are in bold.
Abbreviations: HB (CI), higher bound of 95% confidence interval; LB (CI), lower bound of 95% confidence interval.
Multiple regression model predicting T2 loneliness, controlling for T1 loneliness, in autistic and non‐autistic adults (N = 518)
| Model | Δ |
|
|
|
|
| LB (CI) | HB (CI) |
|---|---|---|---|---|---|---|---|---|
| Model 1 |
| |||||||
| T1 loneliness | 0.749 | 0.031 | 0.729 | 24.216 |
| 0.688 | 0.809 | |
| Model 2 | 0.01 | |||||||
| T1 loneliness | 0.710 | 0.040 | 0.691 | 17.651 |
| 0.631 | 0.789 | |
| Gender (men vs. women) | 0.254 | 0.329 | 0.025 | 0.773 | 0.440 | −0.392 | 0.900 | |
| Gender (other vs. women) | −1.558 | 1.574 | −0.030 | −0.990 | 0.323 | −4.651 | 1.535 | |
| Age | −0.013 | 0.012 | −0.036 | −1.120 | 0.263 | −0.036 | 0.010 | |
| T1 employment status | −0.663 | 0.319 | −0.066 | −2.076 | 0.038 | −1.291 | −0.036 | |
| Prior mental health condition | 0.086 | 0.327 | 0.008 | 0.263 | 0.793 | −0.556 | 0.728 | |
| T1 social support | −0.197 | 0.161 | −0.048 | −1.222 | 0.222 | −0.513 | 0.120 | |
| T1 social contacts | −0.001 | 0.020 | −0.001 | −0.035 | 0.972 | −0.039 | 0.038 | |
| T1 COVID‐19 related worries | −0.013 | 0.032 | −0.013 | −0.409 | 0.682 | −0.076 | 0.050 | |
| Model 3 | 0.01 | |||||||
| T1 loneliness | 0.700 | 0.040 | 0.682 | 17.418 |
| 0.621 | 0.779 | |
| Gender (men vs. women) | 0.123 | 0.332 | 0.012 | 0.371 | 0.711 | −0.529 | 0.776 | |
| Gender (other vs. women) | −1.455 | 1.568 | −0.028 | −0.928 | 0.354 | −4.535 | 1.626 | |
| Age | −0.010 | 0.012 | −0.028 | −0.878 | 0.380 | −0.034 | 0.013 | |
| T1 employment status | −0.592 | 0.319 | −0.058 | −1.852 | 0.065 | −1.219 | 0.036 | |
| Prior mental health condition | −0.133 | 0.338 | −0.013 | −0.392 | 0.695 | −0.797 | 0.532 | |
| T1 social support | −0.177 | 0.161 | −0.043 | −1.102 | 0.271 | −0.492 | 0.138 | |
| T1 social contacts | 0.000 | 0.020 | −0.001 | −0.016 | 0.987 | −0.039 | 0.038 | |
| T1 COVID‐19 related worries | −0.014 | 0.032 | −0.013 | −0.426 | 0.671 | −0.076 | 0.049 | |
| Group (autism vs. comparison) | 1.135 | 0.482 | 0.077 | 2.352 | 0.019 | 0.187 | 2.083 |
Note: Model 4 (including interaction terms) did not add explained variance over and above model 3. Significant p‐values (p < 0.006) are in bold.
Abbreviations: HB (CI), higher bound of 95% confidence interval; LB (CI), lower bound of 95% confidence interval.
Multiple regression model predicting T2 perceived stress, controlling for T1 perceived stress, in autistic and non‐autistic adults (N = 518)
| Model | Δ |
|
|
|
|
| LB (CI) | HB (CI) |
|---|---|---|---|---|---|---|---|---|
| Model 1 |
| |||||||
| T1 perceived stress | 0.658 | 0.033 | 0.664 | 20.222 |
| 0.594 | 0.721 | |
| Model 2 |
| |||||||
| T1 perceived stress | 0.562 | 0.036 | 0.568 | 15.531 |
| 0.491 | 0.633 | |
| Gender (men vs. women) | −0.359 | 0.542 | −0.023 | −0.663 | 0.508 | −1.424 | 0.706 | |
| Gender (other vs. women) | 1.616 | 2.601 | 0.020 | 0.621 | 0.535 | −3.494 | 6.726 | |
| Age | −0.045 | 0.020 | −0.080 | −2.272 | 0.023 | −0.085 | −0.006 | |
| T1 employment status | −0.600 | 0.528 | −0.038 | −1.136 | 0.256 | −1.637 | 0.437 | |
| Prior mental health condition | 1.683 | 0.540 | 0.104 | 3.117 |
| 0.622 | 2.743 | |
| T1 social support | −0.693 | 0.223 | −0.108 | −3.114 |
| −1.130 | −0.256 | |
| T1 social contacts | 0.062 | 0.032 | 0.064 | 1.912 | 0.056 | −0.002 | 0.126 | |
| T1 COVID‐19 related worries | 0.140 | 0.055 | 0.088 | 2.545 | 0.011 | 0.032 | 0.247 | |
| Model 3 | 0.01 | |||||||
| T1 perceived stress | 0.548 | 0.036 | 0.554 | 15.078 |
| 0.477 | 0.620 | |
| Gender (men vs. women) | −0.615 | 0.547 | −0.039 | −1.124 | 0.261 | −1.690 | 0.460 | |
| Gender (other vs. women) | 1.836 | 2.587 | 0.023 | 0.710 | 0.478 | −3.247 | 6.918 | |
| Age | −0.042 | 0.020 | −0.073 | −2.089 | 0.037 | −0.081 | −0.002 | |
| T1 employment status | −0.473 | 0.527 | −0.030 | −0.898 | 0.370 | −1.508 | 0.562 | |
| Prior mental health condition | 1.285 | 0.557 | 0.080 | 2.309 | 0.021 | 0.192 | 2.379 | |
| T1 social support | −0.637 | 0.222 | −0.099 | −2.868 |
| −1.074 | −0.201 | |
| T1 social contacts | 0.064 | 0.032 | 0.066 | 1.970 | 0.049 | 0.000 | 0.127 | |
| T1 COVID‐19 related worries | 0.144 | 0.055 | 0.090 | 2.638 | 0.009 | 0.037 | 0.251 | |
| Group (autism vs. comparison) | 2.130 | 0.796 | 0.093 | 2.676 | 0.008 | 0.566 | 3.693 |
Note: Model 4 (including interaction terms) did not add explained variance over and above model 3. Significant p‐values (p < 0.006) are in bold.
Abbreviations: HB (CI), higher bound of 95% confidence interval; LB (CI), lower bound of 95% confidence interval.