Repercussions of the COVID-19 pandemic for people with autism and their family members: A scoping review

Abstract Objective: to map the diverse scientific evidence available about the repercussions of the COVID-19 pandemic for people with Autism Spectrum Disorder and their family members. Method: a scoping review conducted in the following databases: MEDLINE, CINAHL, SciELO, SCOPUS, EMBASE and Wiley Online Library, in August and September 2021. The protocol of this review was registered at the Open Science Framework under DOI 10.17605/OSF.IO/JYTVD. The data were analyzed and synthesized in a narrative way. Results: a total of 46 publications identified indicate that the pandemic period brought about countless repercussions for the population with autism and their family members when experiencing serious difficulties in the changes or irregularities of the scheduled routines and limited access to education, therapies and social support. Conclusion: the diverse evidence suggests that the COVID-19 pandemic intensified the inequalities already experienced by individuals with autism and their family members, with negative consequences in the emotional, psychological, behavioral and social aspects, interfering with the quality of life and mental health of this population segment. Future studies on individuals with autism and their families during public health crisis periods are of fundamental importance for planning psychiatric, psychosocial and educational interventions.


Introduction
SARS-CoV-2 (COVID- 19) is an infectious disease that affects the respiratory system and is caused by the new coronavirus, first identified in December 2019 (1) , which, given its propagation ease and the exponential increase in the morbidity and mortality rates, was elevated to the pandemic status in March 2020 by the World Health Organization (WHO) (2) .
Representing the largest global health crisis of the last century, COVID-19 led health authorities in several countries to adopt emergency measures such as mandatory extension of quarantine periods, physical/social distancing, closure of schools and non-essential services, and hygiene and protection procedures with mandatory use of masks, as ways to contain spread of the virus and protect their citizens (3)(4)(5) .
Although the measures imposed to contain the pandemic are effective in mitigating spread of the virus, they are responsible for multiple changes and disruptions to several aspects of daily life, which have generated unprecedented feelings of tension, fear, stress and anxiety, making the world uncertain, unpredictable and chaotic (5)(6)(7) .
Among the consequences of COVID-19, there are also the impacts on mental health, as it weakened many individuals' psychological well-being (4,7) , being associated with the onset of psychiatric symptoms in mentally healthy individuals, exacerbation of mental disorders in preexisting cases and, consequently, increased burden for family members (8) .
The pandemic evidenced and increased social, educational and health disparities (3) , as well as disproportionately affected people with disabilities (9) , including those with Autism Spectrum Disorder (ASD), given the potential for exacerbation of the disorder symptoms and limited access to therapies and social activities, challenging the overwhelming responsibility imposed on their family members (10) .

Type of study
This is a scoping review that followed the stages recommended by the Joanna Briggs Institute (JBI) and the Preferred Reporting Items for Systematic Reviews and Meta Analyses Extension for Scoping Reviews (PRISMA-ScR) (11) checklist, which includes the following: development of the title and question; introduction; inclusion criteria; research strategies; selection of evidence sources; data extraction; analysis of the evidence; and presentation of the results (12) . The protocol of this review was registered at the Open Science Framework under DOI 10.17605/OSF. IO/JYTVD (available from https://osf.io/jytvd).

Data collection
To formulate the research question, the PPC mnemonic (Population, Concept and Context) was used, The same search strategy was used in all the databases, described as follows: Descriptors (MeSH) -"Autism Spectrum Disorder" OR "Autism Disorder" OR "Autism" AND "Family" OR "Parents" AND "Pandemics" AND "coronavirus disease-19" OR "COVID-19" OR "SARS-CoV-2".

Selection criteria
Among the inclusion criteria, all available studies with the most varied methodological designs were selected: comment articles, case studies, editorials, literature reviews,  Review and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) (12) . Fortaleza, CE, Brazil, 2021 journalistic materials, in all languages and published between January 2020 and August 2021 -when the publications about COVID-19 were introduced in the world literature.
Studies that did not meet the research objectives based on their titles and abstracts were excluded, as well as those unavailable in full after extensive research and copies of duplicate studies, in addition to abstracts from conferences, lectures and/or presentation of papers.

Data treatment and analysis
Selection of the studies was conducted in a number of phases. In the first, two researchers independently examined the titles and abstracts of potentially relevant studies, and the articles selected that appeared to meet the inclusion criteria underwent a second selection stage.
In this stage, the same reviewers independently read the full texts of all the articles selected and excluded those that did not meet the already established criteria. In the case of any divergence during the process to select the articles in the first or second phase, a third reviewer was consulted.
The methodological quality of the primary studies was not evaluated, as this aspect is not considered in scoping reviews. The form recommended by the JBI was used in data extraction in order to ease the information synthesis and the quality of the recommendations (11) .
For mapping the diverse information, data collection took place through an instrument adapted from the JBI form, prepared by the researchers themselves in Microsoft Excel ® to record the characteristics of the studies included and the relevant information for the research: publication data (year, authors and country of publication), study objective, methodological characteristics (type of study, characteristics of the population), and main results (outcomes and main findings or contributions).
It is important to emphasize that all forms of data were analyzed qualitatively based on the convergences and/or divergences identified, enabling integration of the ideas in a more summarized and reliable way to the findings.

Ethical aspects
As this research uses data in the public domain, it waives approval by a Research Ethics Committee; however, all the authorships were duly registered.

Results
According to the electronic search, a total of 606 potentially eligible studies were identified in the databases; 84 materials were removed due to duplicity and, after applying the exclusion criteria, 46 articles were read and analyzed by the authors of the study, thus comprising the final sample of the review, as shown in Figure 1.    Rev. Latino-Am. Enfermagem 2022;30:e3729.

Discussion
The results referred to in this scoping review made it possible to present a mapping of the production of knowledge about the repercussions of the COVID-19 pandemic for people with ASD and their family members, organized by content similarity in the following categories: Repercussions of the pandemic for people with ASD; Repercussions of the pandemic for the family members; and Benefits of the pandemic for people with ASD and their family members.
The studies indicate that the pandemic period has brought about countless repercussions for the population with autism and their family members, as they experience serious difficulties in the changes or irregularities of the scheduled routines (1,13,26,33,38,42) , limited access to education and therapies (4)(5)9,14,33) and social support (7,26,(43)(44) , interfering in their quality of life and mental health.
The abrupt changes in the routine and the interruption of social activities, therapies and social interaction caused confusion and emotional disorganization among individuals with ASD, due to their preference for highly predictable environments. These circumstances manifest themselves as an involution in the social and emotional behaviors of these patients (26,42) .
Closure of schools and discontinuation of the therapies can have a devastating consequence on development of these individuals (42) , as the "break" in the routine represents a factor that generates emotional stress (29) . The transition from face-to-face activities to online education was described as a major challenge for parents and people with ASD alike, in addition to the fact

Benefits of the pandemic for people with ASD and their family members
-improvements in the relationship with their children and family members (4) ; -more time to teach new skills related to their autonomy, to establish care routines, and to promote social and communicative interaction skills in their children (7) ; -more time for the family and greater family interaction (7) ; -the reduction of sensory and social burden during isolation improved their children's life (4,43,50) . that the online classes further reduced social interaction, triggering feelings of loneliness (14) .
The difficulty accessing the health services was already a reality experienced by individuals with ASD in non-pandemic conditions. The difficulty finding accessible care with overload of the health system, often with additional procedures and restrictions due to COVID-19, intensified the already existing disparities (35) .
Inaccessibility to rehabilitation services such as outpatient, speech and occupational therapy can lead to delays in the developmental skills (5) . Isolation forced the interruption of physical and leisure activities for the general population, and had severe consequences for people with autism, as they have a calming and regulating effect, providing stress and anxiety reduction and mood control, and may be linked to the expression of more positive emotions (28,31,41) .
The incipient availability of the social support network during the pandemic exerted a negative effect both on people with ASD and on the parents, as it is associated with increased caregivers' frustration due to the work and responsibility overload, as well as to problematic behaviors in the individuals with autism, causing family mental distress (7,9,31,(43)(44) and negatively interfering with quality of life and family relationships (5,7,31,41,44) .

Repercussions of the pandemic for the family members
Caring for a person with ASD is associated with greater parental stress when compared to any other type of disability (32) , and dealing with the pandemic and the restrictive measures is associated with additional demands for these parents.
The COVID-19 pandemic had serious repercussions for the family members of people with ASD, as the literature reports higher stress levels and low quality of life since, in addition to dealing with family and work commitments, they need to carry out complex care activities, such as managing their children's behaviors and emotions, which are frequently unpredictable (41) .
The high level of parental stress can exert a negative impact on the psychological well-being of people with ASD and exacerbate behavioral symptoms, creating a vicious circle (33) .
The magnitude and intensity of COVID-19 presents itself as a serious challenge for parents. Almost all the studies indicated that the economic crisis, professional uncertainties and financial issues (7,28,(31)(32)42,44) resulting from the pandemic generated tensions, anxieties and concerns.
The accumulation of tasks and the need to reconcile multiple functions (home office work, house chores, home education, demands to take care of other family members) during the pandemic, imposed a high physical, psychological and emotional burden on the parents of people with ASD (8,13,31,41) .
The families' mental health has been affected by COVID-19 and behavioral challenges in all family members have been observed. The several interruptions in the daily routine triggered symptoms of anxiety, feelings of tension and concern, compromising family dynamics (29) .

Benefits of the pandemic for people with ASD and their family members
The people with ASD and their family members experienced the pandemic period differently: some of them found it a very difficult and frustrating time. However, it can be asserted that people were able to readapt and experienced improvements in the relationships with their children and family members (4) .
Among the positive effects of the pandemic found in some literature materials, it is worth noting the fact that some parents stated having benefited from the additional time to teach new skills related to their autonomy, to establish care routines and, perhaps more importantly, to promote social and communicative interaction skills in their children. The isolation period allowed more time for the family and greater family interaction (7) .
In some studies, it was observed that the decrease in the academic demand and social interactions Rev. Latino-Am. Enfermagem 2022;30:e3729. experienced by some children was reported by the parents as associated with a reduction in negative behaviors, improved mood and more displays of affection. The lockdown reduced sensory and social burden in some adults with autism who revealed that the pandemic improved their lives (4,43,50) .
In general, each family faced the COVID-19 pandemic period in a very particular way; and the socioeconomic situation, the parents' professional challenges and resilience, access to essential services and the children's behavior during the quarantine emerged as some of the factors that could/may enhance or minimize the repercussions of the pandemic on the lives of people with ASD and their family members.
Knowledge of how people with ASD and their family members coped with the COVID-19 pandemic is crucial to providing personalized interventions and tailored support in an uncertain period and in the next similar situations arising either from this or from future pandemics (31) .
Discussions about ASD during the pandemic period are relevant, due to the impact on the way in which an individual will feel and interact with the world around them. Despite being a quite delicate aspect for children and also for their parents, through the information and support of specialized professionals it is possible to overcome the challenges and positively deal with this condition that affects millions of people. Health interventions and public policies need to be planned and coordinated across all sectors, addressing the range of lockdown-related disparities that people with ASD have experienced during the COVID-19 pandemic and will certainly experience in the future, in order to provide inclusive and responses and minimize harms to this population group in times of public health emergencies.