The results were grouped into six sections: 1) Stress experienced during the pandemic, 2) Factors influencing adaptation during the pandemic, 3) Facilitating factors, 4) Barriers, 5) Perceptions of children, 6) Parents’ recommendations.
Stress experienced by parents during pandemic
Almost half of our respondents (45,9%) considered themselves anxious by nature, while only 16,5% reported going through stressful situations quite easily. Also, 52.3% of parents reported having several strategies to cope with difficult situations.
During the pandemic, half of the parents (50.4%) considered it a highly stressful time for them. When asked about the whole family, 41.2% of parents identified the presence of high pandemic-related stress in their family. According to 50.5% of parents, the pandemic became less stressful over time, while 13.8% of parents indicated that the pandemic situation became more stressful.
Parents who reported that their child’s behaviors were difficult to deal with during the pandemic reported that the pandemic was a significantly greater source of stress for them, as well as for their child, than parents who did not report difficulties to manage their child’s behaviors, F (1, 107) respectively 4.861 and 6.72, p < 0.05. Similarly, parents who were concerned about their child’s behaviors during the pandemic reported experiencing more stress during the pandemic than parents who were not concerned about their child’s development and behaviors, F (1, 107) = 4.453, p < 0.05.
Factors significantly influencing children’s behaviors during the pandemic
Parents who reported that their child’s behaviors were difficult to deal with during the pandemic had also reported more difficulty than other parents to manage their child’s behaviors before the pandemic (c2 (1)=26.188, p < 0.001) and were more concerned about their child’s behaviors before the pandemic (c2 (1)= 6,028 p < 0.05). Similarly, parents who reported being concerned about their child’s behaviors during the pandemic also reported more difficulty than other parents to manage their child’s behaviors before the pandemic, (c2 (1)=9.159, p < 0.05) and were more concerned by their child’s behaviors before the pandemic (c2 (1)=21.609, p < 0.001). See figures 1 and 2 in additional file 2 for the differences in difficulties to manage child’s behaviors and parents’ concerns about their child development before and during the pandemic.
However, the characteristics of the child (age, regular vs. specialized class), the parents (salary and educational level), and the family (number of brothers and sisters, presence of a diagnosis in siblings) did not have a significant impact on being concerned about child’s behaviors and/or behavior management during the pandemic (p > 0.1). See table 1 in additional file 1 for descriptive data.
Some barriers reported by parents had an impact on concerns about their child’s development or the ability to manage their child’s behaviors during the pandemic. Five barriers were significantly more reported among parents who were concerned about their child’s behaviors: social isolation (c2 (1)= 18.888, p<0.001), having to pursue academic goals during the confinement, (c2 (1)=8.155, p<=0.01), working in essential services (c2 (1)=10.779, p < 0.05), feeling powerless with regards to their child’s behaviors (c2 (1)=16.246 < 0.001) and their child not having a routine anymore (c2 (1)=8.970, p<0.005). Similar barriers were significantly more reported among parents who found their child’s behaviors more difficult to manage during the pandemic: socially isolation (p<0.001), having to pursue academic goals, (c2 (1)=8.814, p<=0.01), working in essential services (c2 (1)= 6.359, (p < 0.05) and feeling powerless with regards to their child’s behaviors (c2 (1)=11.155, p < 0.001).
What were the facilitating factors?
Out of a list of 30 individual, family, and environmental facilitating factors, the parents reported which were the most helpful in facing the pandemic. The four most endorsed factors were: understanding of their child’s needs (73.4%), establishment of a routine with their child (66.9%), good communication between parents (62.4%), and possibility of spending time together (61.5%). See Table 2 in additional file 1 for all the facilitating factors.
In the open question about facilitating factors, parents made 55 statements. Three major themes were extracted through the thematic analysis: 1) use of adapted interventions (n = 38, 69.1%), 2) COVID-19 management (n = 7, 12.7%) and 3) having access to informal and formal support (n = 4, 7.3%).
Parents identified the need to use adapted interventions to respond to their child’s specific needs. In this regard, many parents reported the importance of setting a routine (“Making sure to have a daily experience anchored in a routine similar to before the pandemic.” – Mother of a 12-year-old autistic boy). They also highlighted that they used materials suitable to autistic characteristics (“A heavy blanket…really helped to calm the anxiety. He always has it with him.” – Mother of an autistic boy aged 6 years and 11 months). Parents mentioned that they respected the needs and the limitations of their child (“I spoke with him to know what he needed.” – Mother of an autistic boy aged 13 years and 4 months).
The parents managed the COVID situation with their child. To do this, they gave their child information and answered their questions (“Talking with him, without hiding reality too much and reassuring him.” – Mother of an autistic boy aged 13 years and 1 month). They also downplayed the situation (“Having an attitude of downplaying events. Without denying the impact of COVID, not talking about it constantly and thinking about it all the time.” – Mother of a 12-year-old autistic boy).
Informal support (conjugal, parent, and children) and formal support (specialized services) were helpful for the families. Parents highlighted the importance of having access to specialized services for their children but also for themselves (“Having the chance to consult my psychologist to vent and help me continue.” – Mother of two autistic boys, one aged 9 years and 3 months, one aged 7 years and 6 months).
What were the barriers?
Out of a list of 17 barriers, parents reported which were the most difficult to face during the pandemic and hindered their child’s adaptation. The three main barriers were: their child having too much access to electronic devices (56%), being isolated from their relatives (55.1%), and having to pursue academic goals (while schools are closed) (51.4%). See Table 3 in additional file 1 for all the barriers.
In the open question on barriers to their child’s adaptation during the pandemic, parents made 52 statements. Four major themes were extracted through the thematic analysis: 1) closure of specialized resources (n=11, 21.2%), 2) lack of opportunities for social interactions (n=9; 17.3%), 3) inappropriate school support (n = 6, 11.5%), and 4) challenging behaviors (n=5; 9.6%).
The closure of specialized resources was perceived as very difficult, with sometimes dramatic consequences. Autistic children and their parents felt isolated given the lack ofaccess to specialized services (“We were left completely alone and without resources, services, or respite. My child completely decompensated and we couldn’t even help him, and nobody could help us either.” – Mother of an autistic boy aged 8 years and 10 months). Some children went through a period of regression (“The children regressed in their already-limited social skills.” – Mother of a 12-year-old autistic boy).
Parents also identified a significant impact of the pandemic on their child’s social interactions. Hence, they reported a lack of social interaction opportunities for their child (“The thing that is hardest for my child is that he can’t have friends over for his birthday because they don’t understand doing social distancing.” – Mother of an autistic boy aged 9 years and 11 months). Parents also found their child to be lonely (“My child was more withdrawn and a little less communicative.” – Father of an autistic boy aged 11 years and 9 months).
The support, services and teaching opportunities offered by schools varied greatly (during the pandemic. Some parents reported that school support was not adapted to the particularities of autistic children (“Students integrated in regular classes who were not failing were not targeted for individualized support [vulnerable is not only when it shows in the academic statistics and scores].” – Mother of a 15-year-old autistic boy).
Also, many challenging behaviors were reported, particularly those related to anxiety (“It was hell. Tantrums, generalized anxiety: fear of dying, of choking, of breaking a bone, etc.” – Mother of an autistic boy aged 7 years and 4 months) and to opposition (“A lot of violence with his little brother.” – Mother of an autistic boy aged 7 years and 4 months).
Perceptions of children
While 38.5% of parents identified the presence of elevated stress in their children, 50% of the children pointed out that the pandemic was stressful for them. In terms of facilitating factors, 92.9 % of children indicated that electronics were what made them feel good during the pandemic. In an open-ended question about what helped reduce their stress, more than a quarter of the responses were about electronics (“lots of Minecraft and YouTube” –11 years and 10 months autistic boy, “listen to YouTube videos” –12 years and 10 months autistic girl, “play videogames” –11 years and 9 months autistic boy, “play with my computer at Hello Neighbor and Nintendo switch at Mario Maker” –13 years and 2 months autistic boy). The two other most important factors, board games and reading, were identified by 37.5% and 35.7% of children, respectively. When children were asked in an open-ended question what they would recommend to a stressed friend during the pandemic, 29% of all the recommendations were related to the social sphere, the main theme of this qualitative analysis. In 70% of cases, these recommendations pertained to communication, and closeness with their parents (“To talk to his mother to get help” – 18 years old autistic boy, “Talking to his parents” – 12 years autistic boy), whereas the rest concerned visiting family and talking to trusted adults (“If he has a trusted adult, tell him he is stressed”– 15 years and 5 months autistic boy, “Go see the family”– 7 years and 2 months autistic boy).
As highlighted by the parents, the lack of socialization (namely “not seeing my friends” –14 years old, autistic boy) was identified as an important barrier by 57.1% of children among a list of 7 potential barriers. Next came the fear of catching the virus (48.2% of the children) and the change in routines (35.7% of the children). The quarter of all the answers to the open-ended question about what they found difficult during the pandemic were also about the limitation of social interactions (“not see my family and friend” –14 years old, autistic boy, “not being able to spend time with my grand-parents” –16 years and 2 months, autistic boy, “having to go to high school and not being able to see my school, my friend and my teachers [from elementary school] one last time” –12 years, autistic boy).
Parents’ recommendations for service organizations and government to increase support to autistic children and their parents during the pandemic Parents were asked what they would recommend for public services in the context of the pandemic. Parents made statements about what could be improved in specialized services (n = 33) and respite (n=14), in schools (n = 31) and by the government (n = 4). In this section, they again stressed the lack of socialization (n=21) as an important factor to consider.Specialized Services
There was a consensus among the parents regarding the importance of having access to services for all autistic children (“At the very least, we would have liked the services that support the families who have a child with ASD to be considered essential services.” – Mother of an autistic boy aged 6 years and 11 months). The importance of access to experts in autism was also stressed by many parents (“Access to psychoeducators.” – Mother of a 13-year-old autistic boy; “Easy consultation with a physician or psychologist specialized in autism.” – Mother of a 13-year-old autistic boy). Access to specialized services during the confinement varied among children. Parents indicated that it should be a priority to maintain basic services in various forms, such as online interventions or phone support (“It would have been relevant to continue the support even remotely, because we no longer had any services, e.g., the educator was calling once a week, but we would have liked the special education technician to be more present.” – Mother of an autistic boy aged 6 years and 11 months). However, considering the heterogeneous profiles of autistic children, these services were not always suitable for meeting their variable needs. Sometimes, direct interventions were necessary but unavailable (“I would have needed more in-person visits from the caseworkers, notably from the intervention center, rather than just talking on the phone for two to three months. I was really all alone.” – Mother of an autistic boy aged 7 years and 4 months). Finally, the importance of having access to respite was stressed repeatedly by parents (“There has to be respite for the families and targeted interventions by qualified personnel to help the families. At the time, there was literally nothing and we were left to ourselves without support of any kind.” – Mother of an autistic boy aged 15 years and 1 month).
School The main theme extracted was the importance of establishing a routine, with the help of better monitoring from the teacher and other professionals from the school, as well as the implementation of adapted academic work (“Supply tools to help set up a routine and not just worklists.” – Mother of an autistic girl aged 12 years and 10 months). The second theme was the importance of follow-up by the school professionals (“That the caseworkers who already know the child continue their calls.” – Mother of an autistic girl aged 12 years and 10 months). Finally, access to specialized counselors and maintenance of in-person schooling for children in specialized classes was the third theme identified by the parents (“Back to school for ASD classes in a regular school.” – Mother of an autistic boy aged 7 years and 1 month).Government Parents highlighted the importance of having access to consistent information. Some autistic children obtained information directly from the media. Constant changes in the information provided about the pandemic and lockdown had a negative impact on them. The parents of autistic children reported the need for accurate information about the virus, but also about health measures implemented in society, work, schools, and preschools (“Avoiding making government announcements that change quickly like the non-resumption of classes in September and then the total opposite a few days later.” – Mother of an autistic girl aged 13 years and 6 months). Parents also underlined the necessity of financial compensation, especially to have access to respite during periods of confinement (“Even the government could have helped by offering money to at least get respite. I was just left on my own and I had parental anxiety and exhaustion.” – Mother of an autistic girl aged 11 years and 6 months).