Children With Autism During the Coronavirus Lockdown

The coronavirus COVID-19 pandemic in 2020 led to many governments mandating restrictive measures to be taken in order to prevent its wider spread. For parents and children, staying at home was one of those measures, including families with a child with Autism Spectrum Disorder (ASD). Before the pandemic in Italy, most children with ASD were included in more or less intensive rehabilitation programmes at home and in dedicated hospitals or institutions. During the pandemic, due to the social distancing, both families and ASD children were not supported in-person by their therapists and were not able to participate in external therapies (Narzisi, 2020). In fact, in Italy health facilities were told to provide only “emergency” medical care and, as a result, people with other health problems, including mental health disorders, have had to wait until the end of the emergency period to seek help, probably until October 2020. That is, because they are not considered to be in an “emergency” condition, patients with chronic mental health problems who need constant medical care have not been able to access proper care.

Cassidy et al. (2020), based on a roundtable discussion, published “An Expert Discussion on Autism in the COVID-19 Pandemic,” which, among other things, summarizes the main international ASD-related organizations that are working on creating guidelines in their respective countries (e.g., the National Autistic Society in the UK, The Autism Society of America in the USA). Everyone agrees that dealing with uncertainty, changes in routine, loss of long-standing coping mechanisms, increased social isolation, and lack of connectedness are important risk factors caused by physical distancing. Added to this are the possible increases or flare-ups in co-occurring mental health issues, such as anxiety. Experts also fear that “rationing of health care resources may discriminate against people with disabilities by confusing measures of frailty with disability-related functional challenges” (Cassidy et al., 2020, p. 116).

In Italy, regardless of the type of therapeutic treatment, the rehabilitation programmes for children with ASD are usually also focused on parental support in order to better manage typical symptoms of autism and stimulate the child’s social and communication skills. Home quarantine as well as the closure of day care facilities are likely to have a negative impact on clinical outcomes, with a risk of aggravation of symptoms and even a relapse. Having to stay home not only slows progress in developing social skills, but also reduces self-reliance and self-confidence (Chaturvedi, 2020).

Further, some children with severe autistic symptoms may not understand what is going on, why their school is no longer accessible, why their routines are interrupted. Hence, it is possible that some of them will have difficulty adapting to changes in their environment. Thus, the intrinsic characteristics of autism (impairments in social communication and interaction, restricted and repetitive behaviours, interests, or activities) and the frequent co-existence of neurological, psychiatric, and medical co-morbidities (Christensen et al., 2018) make individuals with autism a more vulnerable population that needs maximum attention in the context of the prevention and control strategies of the COVID-19 epidemic (Istituto Superiore di Sanità [ISS], 2020). The National Institute of Health (ISS, 2020) issued important recommendations for describing the measures currently in place (e.g., social distancing) and even the most negative ongoing events (symptomatic parent at home or hospitalization) to children with ASD through the use of concrete terminology, avoidance of abstract sentences or metaphors, and/or use of augmentative and alternative communication interventions (Logan, Iacono, & Trembath, 2017). Some children may find it difficult to articulate how they feel about unexpected changes. For others, communication impairments may be associated with problems of receptive and expressive communication, limited verbal, or nonverbal skills, and perspective and/or social communication deficits.

Fear, frustration, and worry can be expressed through behaviours such as changes in sleep/wake rhythms or eating patterns, an increase in repetitive behaviours, excessive rumination, an increase in agitation or irritability, or a decrease in self-care (Hume et al., 2020). Further, many individuals with ASD use electronic devices (such as television, tablet, smartphone) more often and for longer periods of the day, making it difficult to stop using them or to switch from one activity to another. The rigidity and inflexibility of some individuals with autism can make these transitions particularly problematic (ISS, 2020).

The objective of this study was to investigate the main changes perceived by parents in their child’s autistic symptomatology during the first month of home quarantine imposed by Italian governmental decrees to deal with COVID-19. We specifically wanted to (a) to verify the presence of improvements or worsening of the typical symptoms of autism (e.g. restricted and repetitive behaviours, mannerisms and stereotypes); (b) investigate changes in children’s self-care skills; and (c) verify changes in arousal (hyperactivity, fears induced by new situations, and problems with sleeping), in aggressiveness (aggressiveness and irritability), and the sensory profile (olfactory and gustatory sensitivity).

Method

Results

Discussion and Conclusion

In the period, March-April 2020, during the coronavirus (COVID-19) pandemic, physical distancing measures were implemented in Italy, thereby disrupting routines and reducing access to services for families and children with ASD. One month after the beginning of the restrictive measures announced by the Italian government, our findings showed an increase of restricted, repetitive behaviours, mannerisms, and stereotypes in about 33% of the children in the sample. This finding is similar to that reported by Sprang and Silman (2013), who found that 30% of isolated or quarantined children showed signs of post-traumatic stress disorder during the 2009 H1-N1 pandemic in the United States. On the other hand, the increase in stereotyped behaviours could also be interpreted as a sign of the children’s need to anchor themselves to a known pattern of behaviour (though apparently not functional), which could have a soothing value when daily routines were abruptly interrupted and the children had to adjust to a new and sudden adaptation, both external (social isolation and full-time coexistence with parents) and internal (managing emotions, such as anger or sadness).

As Tribulato (2014) argued, “ritual repetition is an effective tool for reducing anxiety … Through stereotypies, children with ASD try to reduce and counteract the anxieties, fears and internal conflicts … In fact, when the child’s anxiety and suffering decrease, this type of symptoms is greatly attenuated …. For this reason, it is absolutely useless and counterproductive to struggle to limit or try to extinguish these signs of suffering, through reproaches or negative reinforcements. It is much better to commit to offering the child a more peaceful, joyful and dialoguing environment” (pp. 50–51).

In the present study, parents perceived a significant increase in their children’s difficulty in the areas of Hyperactivity and Fear toward new situations, expressed in terms of sensory-motor agitation and restlessness. This could be related to the absence of planned routines; in fact, according to parents’ reports, in the months preceding the lockdown, routine activities (school, therapy, extracurricular activities) had helped them contain and manage the conduct of their children.

At the same time, a worsening in the area of sleep regulation was found, showing a significant amount of nocturnal and/or early awakenings, agitation, and difficulty in falling asleep, associated in some cases with the need and/or desire of the children to go back to sleeping with their parents despite previously having developed the ability to sleeping alone in their own bed. Problems related to sleep regulation were also reported by other authors (Altena et al., 2020), who declared that potential for sleep problems to emerge or worsen during periods like this is high. This may be particularly true for children with neurodevelopmental conditions (including attention-deficit/hyperactivity disorder and ASD), who may be particularly vulnerable to disturbed sleep during this time of great change and uncertainty (Becker & Gregory, 2020). In addition, it should be emphasized that less or poor sleep may leads to greater attentional difficulties and increased restlessness, resulting in behaviours that mimic emotional dysregulation (Golberstein, Wen, & Miller, 2020).

In our study, participating parents perceived greater variability in the moodiness and irritability of their children, reporting an increase in apparently unmotivated fears and important difficulties in being comforted by the caregiver. Nevertheless, a very small percentage of children showed the emergence or intensification of self- and other-directed aggressive behaviours; this could be related to the increased tendency to express emotions or mood changes openly, which may represent a protective factor towards dysfunctional behaviours.

It is important to point out that the children’s self-care skill did not worsen, so that the skills acquired before the pandemic, supported by parents, were not lost. A further noteworthy finding is the absence of a correlation between symptomatic behaviours and intelligence quotient; that is, although the children in the present study were very heterogeneous with respect to their IQ scores, this did not seem to have affected any changes in symptoms during this first month of lockdown. This suggests that cognitive functions are not represented by a single performance, as expressed in a standardized test score, but may have an adaptive meaning; in this way, even those with a lower IQ score may be able to demonstrate coping strategies in a pandemic situation.

In light of the sudden change in habits that families and children with ASD experienced in the first month of lockdown, the preliminary results of this study underline the importance of parental support and parents’ need to have constant contact with professional support, even online if not possible in-person. During the counselling sessions, the psychologists found it important to redefine with parents the various meanings of “rehabilitation,” usually involving encouraging social interactions, reducing social distances, and promoting school inclusion.

The principal aim of therapeutic continuity in parental support was to accommodate caregivers’ previous and emerging vulnerabilities, but above all to help them make sense of the abnormal behaviours of their child. As one parent said, “Recently my son often got angry and cried with pain, especially when his dad went to work at the supermarket … only thanks to the longer time spent with him and to the fact that I was not scared at his strong reactions of anger, was I able to help my son say that he was crying because he was afraid that his dad would meet the virus.”