Views and experiences of individuals with autism spectrum disorder and their mothers during the COVID-19 pandemic

Abstract

Background: The COVID-19 pandemic is thought to have a variety of effects on people with an autism spectrum disorder (ASD). The purpose of this study was to look into the perspectives and experiences of people with ASD and their mothers regarding the effects of the COVID-19 pandemic.

Method: The current study employs a qualitative research approach. Semi-structured interviews were used to collect data. The study included the participation of 16 individuals. Eight of them had ASD, while the remainder were their mothers.

Results: The information was divided into two categories: people with ASD and their mothers. The data collected from individuals with ASD were organized into four major themes: (a) the meaning of COVID-19 for them; (b) pandemic activities; (c) measures taken during the pandemic; and (d) pandemic reflection on the school. The data drawn from the mothers of the individuals with ASD were categorized into two themes: (a) the impact of the pandemic and (b) changes in children with ASD during the pandemic.

Conclusions: The study results show that individuals with ASD could not perform as many activities during the pandemic as they would usually do. Hence, the results suggested that the participants were adversely affected by the pandemic.

Introduction

Unexpected situations such as disasters, emergencies, and epidemics influence all the individuals in a society and their lives. A recent study (Schiariti 2020) suggests that extraordinary situations cause at least three problems: (a) individuals with special needs being a heterogeneous group; (b) individual differences; and (c) changing needs against events and/or situations. Furthermore, they are more negatively impacted mentally and physically in disasters and emergencies than typically developing individuals (Peek and Stough 2010).

Autism spectrum disorder (ASD) is a neuro-developmental disorder characterized by limitations in social interaction and communication; repetitive behaviors; the desire to maintain sameness; limited interests and behaviors; and overreaction to sensory stimuli such as sound, heat, and smell (American Psychological Association (APA) 2013). Due to both their diagnostic characteristics and the cognitive, affective, and behavioral characteristics of individuals on the spectrum (Mutluer et al. 2020), it is critical for individuals with ASD and those around them to experience what such individuals experience during pandemics and/or extraordinary situations.

The World Health Organization (WHO) declared the COVID-19 outbreak a pandemic on March 11, 2020, and the first cases in Turkey were officially reported in March 2020 (Republic of Turkey Ministry of Health 2020). The COVID-19 Pandemic, which we are still experiencing in 2022, is still alive and well with new variants, posing a health risk to everyone (Centers for Disease Control and Prevention (CDC) 2021). Individuals with special needs are among those who have been disproportionately affected by the COVID-19 pandemic. Individuals with special needs face high mortality rates (Landes et al. 2020) and risks of contracting COVID-19 (Eshraghi et al. 2020) during the COVID-19 pandemic. Furthermore, it has been observed that the measures taken and the restrictions imposed have a mental impact on individuals with special needs (Eshraghi et al. 2020). In Turkey, from the beginning of the COVID-19 pandemic until the so-called new normal period, special education institutions providing education services (such as schools at all levels that provide education services to individuals with special needs, rehabilitation centers providing support and special education services, and foundations) suspended face-to-face education due to the full closure of practices. Decreased family social support during the pandemic (Asbury et al. 2021, Eshraghi et al. 2020, Manning et al. 2021) and limitations in distance education (Bozkus-Genc and Sani-Bozkurt 2022, Buchnat and Wojciechowska 2020, Narzisi 2020, Stenhoff et al. 2020, Yarımkaya and Töman 2021) affected individuals with special needs more adversely than their typically developing peers (Hassiotis et al. 2020). Along with the epidemic, a decrease in children’s physical activities and an increase in screen time emerge as additional issues (Garcia et al. 2021, Isensee et al. 2022, Stadheim et al. 2022, Yarımkaya and Esentürk 2022). The pandemic has limited many situations and caused changes in the lives of individuals with ASD and their parents (Brondino et al. 2020). Studies performed with the parents of individuals with ASD in this process have shown that difficulties are experienced in structuring daily routines and leisure activities and in behavior management (Colizzi et al. 2020, Karahan et al. 2020, Mutluer et al. 2020). Recent studies also suggest that individuals with ASD have higher levels of anxiety than typically developing individuals and score low on scales measuring mental well-being (Mutluer et al. 2020).

There are many studies on people with special needs and families experiences during pandemic in the literature. Among these studies, there are studies that investigate the experiences of parents have child/children with ASD (Arici-Dogan and Gorgu 2022, Bozkus-Genc and Sani-Bozkurt 2022, Cahapay 2022, Colizzi et al. 2020, Fox et al. 2022, Isensee et al. 2022, Karahan et al. 2020, Kaya and Sahin 2021, Kreysa et al. 2022, Majoko and Dudu 2022, Manning et al. 2021, Meral 2022, Stadheim et al. 2022, Stankovic et al. 2022, Tokatly Latzer et al. 2021) regarding the pandemic. However, studies on the experiences of people with ASD are uncommon. When the literature is examined, two studies were carried out to investigate the stress and anxiety levels of individuals with ASD during the COVID-19 pandemic (Toseeb and Asbury 2022, Oomen et al. 2021), to reveal the effects of the COVID-19 pandemic on physical activity (Yarımkaya and Esentürk 2022) and sleep time (Garcia et al. 2021), other behavior problems (Di-Renzo et al. 2020, Guller et al. 2021, Türkoğlu et al., 2020). the study was carried to investigate effects of physical activity program (Yarımkaya et al. 2022) and one study was carried out to teach such individuals the precautions (mask use) (Sivaraman et al. 2021). Moreover, we could not find any study investigating the views and experiences of individuals with ASD during the pandemic. It is extremely important to examine the experiences of individuals with ASD and their parents during the pandemic, determine what should be done regarding the negativities that may be experienced in the following processes, and plan studies to ensure that parents and individuals with ASD are less affected by the process for them to remain psychologically and socially healthier individuals. Taking into account both of the literature’s needs, this study aimed to investigate the perspectives and experiences of people with ASD and their mothers between the start of the COVID-19 pandemic in Turkey (March 2020) and the start of the ‘new normal’ (November 2021). Answers to the research questions posed were sought in accordance with this broad goal.

• What are the experiences of individuals with ASD regarding the changes (daily life, family life and school life) during the pandemic?

• What are the mothers of individuals with ASD regarding their experiences of the pandemic and the changes they have observed on their child?

Method

Study design

According to the qualitative research paradigm, the study was designed phenomelogy. Phenomelogy describes how human beings understand and experience a certain phenomen. Phenomelogy aims to obtain deeper meaning about the meaning and nature of our experiences (Patton 2002). In phenomenology, the common meaning of their lived experiences related to the phenomenon or concept is defined (Creswell 2014). The phenomenon of this study is the perspectives and experiences of individuals with ASD and their mothers from the beginning of COVID-19 to the ‘new normal’ in Turkey. We considered the phenomenology pattern appropriate because we wanted to understand in depth the specific experiences of the participants regarding this phenomenon.

Participants

Participants were chosen using one of the purposeful sampling methods, criterion sampling. Purposeful sampling is defined as selecting participants from a larger group using a non-random sampling technique (Marshall and Rossman 2014, Neuman 2014).

Individuals with ASD aged 8 to 21 years old and receiving education at different educational levels, from primary school to university, comprise the study’s participant group, as do their mothers. The following criteria were established in the current study for individuals with ASD: (a) possessing expressive language skills, (b) comprehending what is said to them, and (c) attending a school/university. Following the preliminary interviews, semi-structured interviews were conducted with a total of 16 people, eight of whom had ASD and the rest were their mothers. They all agreed to participate in the study. Mugla Sıtkı Koçman University granted permission to the Ethics Committee for the research to be conducted in accordance with the ethical procedure. Tables 1 and 2 contain detailed information about the participants.

Table 1.

Characteristics of individuals with ASD.

Participants	Age	Gender	Education
			Level	Type
P1	21	Male	University, undergrade 1st year	Public university
P2	17	Male	High school, 10th grade	Special education school
P3	16	Male	High school, 9th grade	Special education school
P4	14	Male	Secondary school, 7th grade	Inclusive
P5	10	Male	Primary school, 4th grade	Inclusive
P6	8	Male	Primary school, 2nd grade	Inclusive
P7	15	Female	High school, 9th grade	Inclusive
P8	15	Female	High school, 9th grade	Special education school

Table 2.

Characteristics of the mothers of individuals with ASD.

Participants	Age	Education
M1	46	University
M2	42	Secondary school
M3	44	High school
M4	44	University
M5	47	Primary school
M6	44	University
M7	41	University
M8	46	University

Procedure

Data collection

Data was collected through semi-structured interviews. To this end, first, open-ended questions were prepared. The open-ended questions were developed based on (a) the authors’ personal interests, concerns, and thoughts about individuals with ASD and their families during the pandemic; (b) prior interviews with families of children with ASD other than the study participants conducted by the first and second authors; and (d) information from the literature. To determine whether the interview questions were suitable for the research purpose, opinions were obtained from five experts who had previously conducted semi-structured interviews, and the questions were finalized in line with the feedback received. The semi-structured interview questions consist of eight questions for individuals with ASD and seven questions for the mothers, each with at least two options (e.g. a, b, c) Detailed information about the interview questions are presented in Tables 3 and 4.

Table 3.

Interview questions for mothers.

1. What do you have to say about the pandemic process? a. The pandemic process is from your point of view (daily life, work life, etc.) how goes it? What are you doing during this process? Can you give examples?   a.1. What are the positive aspects? Can you give examples?   a.2. What are the negative aspects? Can you give examples? b. From the point of view of your child with ASD (daily life, school life, etc.) how goes it? What is your child doing during this process? Can you give examples?   b.1. What are the positive aspects? Can you give examples?   b.2. What are the negative aspects? Can you give examples? 2. What are the positive and negative changes that you have observed in your child with ASD during the pandemic process? Can you give examples? a. From a physical point of view (weight gain/loss, inactivity/mobility, changes in appetite and sleep, joint pain, acne, etc.) what are the changes you have observed? Can you give examples? b. From a behavioral point of view (calmness, aggressiveness, obsession development, etc.) what are the changes you have observed? Can you give examples? c. From a social point of view (not talking to friends, staying alone at home, getting close to parents, not getting together Decently with family members outside the home, etc.).) what are the changes you have observed? Can you give examples? d. From a psychological point of view (anxiety, fear, anxiety, stress or relaxation, etc.) what are the changes you have observed? Can you give examples? 3. What are the situations that please you about your child with ASD in general during the pandemic process? Can you give examples? a. What do you say about the arrangements by which the situations that please you are realized? 4. What were the issues/issues that you had difficulty with your child with ASD during the pandemic process? Can you give examples? a. What were the precautions and/or actions you took for the subject/issues you were struggling with? Can you give examples? b. Have there been people/persons and/or institutions/institutions that you have received support for the subject/issues that you are struggling with? On what issues, what kind of support/supports did you receive? Can you give examples? 5. Do you participate in distance education / online trainings /have you been able to provide them? If your response is yes a. What kind of education/training do you attend/have you participated in? Can you give examples? What kind of support/supports do you need/have you heard? b. How/how was your access to online resources/resources related to the topics/topics you need about your child in these trainings/trainings? Are you able to access/provide it easily? c. What do you say when you evaluate these trainings/trainings that you have attended about your child?   c1. In terms of yourself   c2. In terms of your child If your answer is no a. What do you think/why/what were the reasons for this? 6. In this period, as in the last period, the pandemic continues. In this case, what are your plans for your child with ASD? Can you give examples? 7. In your opinion, in order for your child with ASD to spend the pandemic process more comfortably, the state, local governments, educational institutions, the society in which they live, etc. what can he do?

Table 4.

Interview questions for participants with ASD.

1) What comes to mind when you say Corona/Pandemic/COVID? Can you tell me? 2. What are you doing during the Corona/Pandemic/COVID process? Can you give examples? (Generally) 3. What are you doing to protect yourself from the virus during the Corona/Pandemic/COVID process? Can you give examples? 4. What kind of changes have happened in school life during the Corona/Pandemic/COVID process? Can you tell me? 5. What were the things you did with ease about your classes? Can you give examples? 6. What were the things you had difficulty with in your classes? Can you give examples? 7. What were the things that made you happy during the Corona/Pandemic/COVID process? Can you give examples? a. Why would these things have made you happy? 8. What were the things that made you unhappy during the Corona/Pandemic/COVID process? Can you give examples? a. What do you think were the reasons for all this?

Prior to the interviews, consent forms were sent to individuals with ASD and their families via email. The participants were informed by the researchers via phone and Zoom about the different components of the interview (e.g. the subject of the interview, the purpose of the research, how to interview, the ethical loyalty of the research and the researcher). The participants were asked to fill out the forms and send them to the first researcher via email. The interviews were conducted with three mothers (M3, M5, M7) and their children (P3, P5, P7) via video call on their mobile phones using WhatsApp, and with other participants via video call using the Zoom program on the computer in January, February, and March 2021. Participants with ASD were interviewed for a minimum of 13 min 46 s, a maximum of 37 min 17 s. The interviews lasted an average of 19 min. Mothers with ASD were interviewed for a minimum of 28 min 49 s, a maximum of 75 min. The interviews lasted an average of 42 min.

Data analysis

The interviews were analyzed using the NVivo Windows 12 packaged software, which included descriptive and thematic analysis, two methods commonly used in qualitative data analysis. Descriptive analysis is used to analyze data that does not need to be parsed (Miles and Huberman 1994). Thematic analysis is a type of analysis that allows researchers to understand people’s opinions, thoughts, and experiences by using data collection tools such as interview transcripts and survey responses. As a result, these two types of analysis were employed. A 4-stage process was followed for descriptive analysis. These are as follows: (a) establish a framework, (b) process the data in accordance with the thematic framework, (c) define the findings, and (d) interpret the findings (Creswell 2014, Hay 2000). For thematic analysis, the data was analyzed in 6 steps according to Braun and Clarke (2006). These steps are; (a) familiarization with the data, (b) initial coding, (c) examinatining themes, (d) reviewing themes, (e) defining and naming themes, (f) producing the report. Each of the 16 interviews was listened to and then transcribed into a Microsoft Word document prior to data analysis. The transcripts were created in the order in which the interviews were conducted, with no changes made to any of the speeches. All of the interviews yielded a total of 116 pages. To ensure the reliability of the transcripts, at least 30% (n = 6) of the randomly selected interviews were sent to an expert in interviewing for control of the interview transcripts. It was confirmed that the transcripts were performed correctly based on the expert’s feedback. In the thematic analysis, after the interview transcripts, a consensus was reached by the research team and the theme and sub-themes were created in line with the stages mentioned above and checked by the researcher team and finalized. On the other words all data and codes were analyzed independently by the first and second researcher. It was then discussed until consensus was reached and the generated codes and sub-themes were checked by the third author. After the thematic analysis, descriptive analysis was started. The research purpose and questions are matched with the themes and sub-themes revealed. After the whole analysis process research team developed a theme guide. Inter-coded consistency was calculated by comparing the expert’s theme guide’s responses, frequency, and participant numbers to the researchers’ guide. A total of six interview transcripts and theme guides, three of which were selected impartially from both the mother and the participants with ASD, were given to a specialist, and a code was requested again for the data. Then, these codes were compared with the researchers’ codes, and reliability analysis was performed. The answers to each question were examined one by one, and the codes given by the researchers and the expert were compared. The formula of [(Interobserver Agreement)/(Agreement + Disagreement) × 100] developed by Miles and Huberman (1994) was used to calculate reliability. The calculation (before consensus) resulted in a consensus in 17 of the 20 responses (3 themes and 13 sub-themes from individuals with ASD, and 1 theme and 7 sub-themes from parents), frequency, and participant codes, and the reliability coefficient was 90%. At the end of the analysis, the final version of the theme and sub-themes is in Table 5.

Table 5.

Themes and sub-themes.

	Themes	Sub-themes
Participants with ASD	The Meaning of the Corona/Pandemic/COVID-19 for them	Staying at home
		Epidemic, disease
		Quarantine
		Starting a new life
	Pandemic Activities	Watching television, watching movies, playing computer games
		Studying
		Doing sports (e.g. walking, running)
		Carrying out activities with family members
		Acquiring new hobbies
	Measures Taken During the COVID-19 Pandemic	Wearing a mask
		Paying attention to hand hygiene
		Not going out of the house
		Maintaining social distance
		Doing sports
		Carrying out activities with family members
		Acquiring new hobbies
	Reflection of the COVID-19 Pandemic on School	General impact
Mothers	The Impact of the Pandemic	Positive effect
			Negative effect
	Changes in Children with ASD During the Pandemic

Table 6.

Frequencies on themes (ASD).

Theme: The meaning of the Corona/Pandemic/COVID-19 for them
	f
Staying at home	5
Epidemic, disease	1
Quarantine	1
Starting a new life	1
Theme: Pandemic activities
Watching television, watching movies, playing computer games	5
Studying	2
Doing sports (e.g. walking, running)	2
Carrying out activities with family members	2
Acquiring new hobbies	1
Theme: Measures taken during the COVID-19 pandemic
Wearing a mask	8
Paying attention to hand hygiene	3
Not going out of the house	2
Maintaining social distance	2
Theme: Reflection of the COVID-19 pandemic on school
General impact
Starting online lessons	8
Positive effects on themselves
No obligation to follow the rules in the classroom	3
Asking questions to teachers easier	2
Negative effects on themselves
Not seeing friends	8
Problems with the Internet connection	4
Not being able to fully understand what is taught during the lessons	2

Trustworthiness and validity

To ensure trustworthiness, the data collection was conducted in depth and the descriptions were carried out in detail. Consistency between and within data was continuously looked at. All of the researchers have taken qualitative research courses and have published at least 1 article that has been patterned with qualitative research and published in peer-reviewed journals. The descriptions were checked by both the three researchers and an expert who conducted a qualitative study (except for the one who collected the reliability data). Research questions were sent to five different experts for expert review, which is one of the ways to ensure credibility. In the data collection and analysis, an expert who led the qualitative research course was consulted. To ensure validity, the participant interviews were evaluated in detail, in depth, and, most importantly, objectively. To avoid bias and misunderstanding, the interviews were transcribed and transferred to the computer almost simultaneously. To avoid an incorrect dump, all the data was read again after the dump.

Results

Views and experiences of individuals with ASD

Four themes emerged from the analysis of the interviews with individuals with ASD: (a) The meaning of the Corona/Pandemic/COVID-19 for them; (b) Pandemic activities; (c) Measures taken during the pandemic; and (d) Reflection of the COVID-19 pandemic on school (Table 5).

(a) The meaning of corona/pandemic/COVID-19 for them

The questions ‘What comes to your mind when Corona/Pandemic/COVID-19 are mentioned?’ And ‘What would you say about it?’ were asked of the individuals with ASD during the semi-structured interviews. Table 6 shows the participants’ responses and frequencies. Four sub-themes, ‘staying at home’, ‘epidemic, disease’, ‘quarantine’, and ‘starting a new life’, were reached under this theme. Staying at home was the connotation of the pandemic for more than half (five people) of the individuals with ASD. P3 described staying at home during the pandemic as ‘a period when we were all locked up at home, when we never left the house for a while and stayed at home during the pandemic’.

Table 7.

Frequencies on themes (Mothers).

Theme: Impact of the Pandemic
f
Positive effect
Time spent with family members	8
Children helping with housework	5
Sense of responsibility	5
Increased personal communication	4
Negative effect
Disruption of children’s education life	8
Cessation of social and physical activities	8
Decreased area for socialization of mothers	4
Theme: Changes in children with ASD during the pandemic
Behavioral changes	6
Physical changes	3
Psychological changes	3
Social changes	3
Other changes (Sleep disturbance)	2

Corona/Pandemic/COVID-19 connoted ‘epidemic, disease’, ‘quarantine’, and ‘starting a new life’ for three participants. P2 used the words ‘Epidemic, disease’ to describe the pandemic, while P5 used the word ‘Quarantine’. P6 stated that Corona/Pandemic/COVID-19 represented the beginning of a new life for him and used the following words to express this: ‘I believe that my family and I, as well as my teachers, are starting a new life. And my friends as well. Because everything was more, eeee… everything was different without Corona’.

(b) Pandemic activities

The question ‘What did you do during the Corona/Pandemic/COVID-19?’ was asked of the individuals with ASD, and they were asked to give examples of the activities they performed. The sub-themes under this theme were listed as ‘watching television, watching movies, playing computer games’, ‘studying’, ‘doing sports’, ‘carrying out activities with family members’, and ‘acquiring new hobbies’.

Five of the participants stated ‘watching television, watching movies, playing computer games’ as the activities they did during the COVID-19 pandemic. P7 expressed the activities she did during the pandemic with the words, ‘I sit on the sofa, watch television. I play computer games. After that, I fall asleep’. P2 said the following: ‘Hmm, I sit and watch a movie, then a Netflix series. That’s it’. Two of the participants stated that they carried out activities with their family members during the COVID-19 pandemic. P1 exemplified the activities he carried out with his family members with the following words: ‘Sometimes I play games with my brother; I spend time with my brother. Sometimes I help my brother with his homework.’ Only one participant mentioned acquiring new hobbies as an activity during the COVID-19 pandemic. P1 stated that he acquired new hobbies by saying, ‘There is a thing called Google Earth; I've just learned about it. I am using it’.

(c) Measures taken during the COVID-19 pandemic

The question, ‘What do you do to protect yourself from the virus during the Corona/Pandemic/COVID-19?’ was asked of the individuals with ASD. During the pandemic, four sub-themes were implemented: wearing a mask, practicing hand hygiene, ‘not leaving the house’, and ‘maintaining social distance’.

All of the participants stated wearing a mask as a measure they took during the COVID-19 pandemic. P1 expressed the measure regarding the sub-theme of wearing a mask with the words, ‘I wear a mask all the time, I mean, outside’. Three of the participants stated hand hygiene as a measure they took during the COVID-19 pandemic. P3 expressed the measure he took with regard to paying attention to hand hygiene with the following words, ‘For example, I wash my hands frequently. How can I say, immediately after I have taken something in my hands or something has touched my hand’, Two of the participants stated that not going out of the house was the measure taken during the COVID-19 pandemic. P1 stated that he took precautions by staying at home and expressed this with the following words: ‘I do not go out of the house when it is not necessary. That’s why I stay at home and don’t catch the virus’. Only two of the participants stated maintaining social distance as the measure taken, with the words, ‘Well, I stay away from people. I don’t approach them’.

(d) Reflection of the COVID-19 pandemic on school

The question ‘What kinds of changes have occurred in school life during the Corona/Pandemic/Covid-19?’ was asked to individuals with ASD. Sub-themes were presented under the headings of ‘general impact’, ‘positive impacts on the individual’, and ‘negative impacts’. The general impact was indicated as ‘starting online classes’, while positive impacts were divided into categories as ‘no obligation to follow the rules in the classroom’ and ‘asking questions to teachers’, and negative impacts were divided into categories as ‘not seeing friends’, ‘problems with the Internet connection’, and ‘not being able to fully understand what is taught during the lessons’.

The COVID-19 pandemic resulted in the closure of schools and the start of online classes for all participants. P6 emphasized it in the following way: ‘I have a tablet computer that I use during lessons. There, my teacher teaches and explains Turkish and mathematics’.

The participants explained the positive and negative impacts of the change in school life and the pandemic on themselves. Three of the participants stated that they did not have to follow the rules in the classroom. With the closure of schools during the pandemic, this was a positive for them.

Two of the participants stated that the pandemic made it easier for them to ask their teachers questions. P4 expressed this with the following words: ‘Now, my teacher, no one can see me. I mean, I have a friend, Ahmet, who doesn’t see me. So I asked my teacher about everything. You know when Ahmet laughed’.

All of the participants stated that the most negative impact of the pandemic on themselves was not being able to see their friends. P2 expressed the negative impact of not seeing his friends on himself with the following words: ‘I am very sad because I can’t see my friends. I can’t see Sema’. P6 stated the following: ‘I didn’t see my friends, and they didn’t come either’.

Four of the participants indicated that they were adversely affected by this situation due to the problems with the Internet connection. P3 expressed the difficulty he experienced with the Internet access by saying: ‘Sometimes there were problems with the connections; the sound and the video used to disappear. I have a little trouble with them’.

Three of the participants stated that not being able to fully understand what was taught during the lessons was a negative impact of the pandemic on them. In this context, P1 expressed the situation he experienced with the following words: ‘Sometimes, I had difficulties understanding the lessons from a distance’.

Views and experiences of mothers

The analysis of the interviews with the mothers of individuals with ASD yielded two themes: (a) the impact of the pandemic and (b) changes in children with ASD during the pandemic (Table 5).

(a) The impact of the pandemic

The theme of the pandemic’s impact on mothers of individuals with ASD is divided into two sub-themes: (a) positive impact and (b) negative impact. The frequency distributions of the mothers’ responses are shown in Table 7. The positive effects of the pandemic on the participants were divided into sub-themes such as ‘time spent with family members’, ‘children helping with housework’, ‘sense of responsibility’, and ‘increased personal communication’. Sub-themes concerning the negative effects of the pandemic included ‘disruption of educational life’, ‘cessation of social and physical activities’, and ‘reduced area for socialization of mothers’.

Under the sub-theme of positive impacts, mothers explained the positive situations they and their children with ASD experienced during the COVID-19 pandemic. The sub-theme of positive impact consists of the following categories: Time spent with family members (a), children helping with housework (b), a sense of responsibility (c), and increased personal communication (d).

All of the mothers agreed that spending time with family members was the best part of the pandemic. M6 expressed her thoughts on the subject as follows: ‘The good thing is just to spend a little more time together’. We wouldn’t spend so much time together if there wasn’t a pandemic. ‘I could take 15 days off this Ramadan’, for example. We spent quality time together’.

Five of the mothers indicated their children helping them with housework during the pandemic as a positive impact on the pandemic. M1 expressed the fact that her child helped her by saying, ‘… He started to help with housework more than before, I mean, before the pandemic’. Five of the mothers indicated the increased sense of responsibility in their children as a positive impact of the pandemic.

In the category of increased personal communication, four of the mothers stated that their children with ASD communicated more using more proper and clearer expressions. M8 expressed the category of increased personal communication with the following words: ‘… P8's communication with her elder sister and her brother increased compared to the period before the pandemic. So, she is engaging in dialogue with them more’.

Under the sub-theme of negative impact, mothers explained the negative situations they and their children with ASD experienced during the COVID-19 pandemic. The sub-theme of negative impact consists of the following categories: (a) disrupted educational life, (b) cessation of social and physical activities, and (c) reduced area for socialization of mothers.

All of the mothers indicated the disruption of their children’s educational lives as the negative impact of the pandemic. M2 expressed the disruption of her child’s educational life with the following words: ‘Of course, there are negative situations. She took a break from special education and could not go there. She could not go to the other school either. No matter how much she studies at home, it is not like at school’.

All of the mothers indicated the cessation of social and physical activities as the negative impact of the pandemic. M7 expressed their experiences in this pandemic by stating that ‘It was better before. We used to go swimming and do children’s sports. All of these are over. We can’t go to training or anything. There is nothing left in terms of sports and lessons. So, we are stuck in a rut’. Four of the mothers stated that their socialization areas decreased due to the pandemic. M7 expressed this with the words: ‘I am very sad, I hope this will pass. When P7 was at the lesson, I used to walk around and take a breather while I was waiting for her in Ankara. Now, they don’t have anything’.

(b) Changes in children with ASD during the pandemic

The theme of changes in children with ASD during the pandemic consists of five sub-themes, including (a) behavioral changes, (b) physical changes, (c) psychological changes, (d) social changes, and (e) other changes (sleep disturbance).

In the sub-theme of behavioral changes, mothers (6 people) indicated behavioral changes in their children as changes in children with ASD during the pandemic. M2 expressed behavioral changes in her child by expressing that, ‘He used to swing a bit, so it increased slightly’. Two of the mothers stated no change in their children’s behaviors during this period. M1 said that there was no change in her child’s behavior by saying, ‘No, there is not. P1's behaviors are always the same’.

Three of the mothers indicated physical changes in their children during the pandemic. While M7 expressed her view on this subject by saying, ‘She lost a lot of weight, she lost a great amount of weight. A lot of pimples appeared’. As the opposite of M7, M5 expressed the physical change in her child during pandemic by stating, ‘He gained weight, teacher. He started to eat every minute’. He goes to the refrigerator and looks for something to eat. He started to eat more. He eats all the time because of boredom’. Five of the mothers stated no physical change in their children during the pandemic. M3 expressed her view on this issue with the following words: ‘There wasn’t much physical change like this’.

Three of the mothers said that psychological changes occurred in their children during the pandemic. The participants explained these changes as feelings such as anxiety and excitement. M7 expressed the psychological changes that her child experienced with the following words: ‘Anxiety, you don’t know when this pandemic will end. She is very anxious; she is afraid that it will not end’. Five of the mothers stated no psychological change in their children during the pandemic. M3 expressed her view on this issue by saying, ‘No, there was not. I mean, we experienced the same thing’. M7 expressed this by stating, ‘No, there was not’.

Three of the mothers indicated social changes in their children as changes in children with ASD during the pandemic. Five of the mothers stated no social change in their children. M2 indicated her view on this issue by stating, ‘No, teacher. There is nothing in social terms’. M8 expressed this as follows: ‘No, there is not. There is no change in that respect’.

Two of the mothers indicated the other changes as changes seen in children with ASD during the pandemic. M7 expressed the situation with the following words: ‘P7's sleep pattern disturbed all of us. But after this pandemic, definitely after the pandemic, the sleep pattern became more disrupted at night. She used to fall asleep at 3 or 4 in the morning’. Now, at 5 or 6, she doesn’t fall asleep until the morning (M7)’.

All of the mothers indicated the inability to participate in online activities as services were disrupted during the pandemic. M6 stated the reason for the inability to participate in online activities as not finding time by saying, ‘In one word, it is a lack of time’. All of the mothers indicated the failure to provide support for special education services (the lack of appropriate conditions, the failure to provide continuity) as the services were disrupted during the pandemic. M2 expressed this in the following way: ‘Well, actually, I have a lot of things planned, but I don’t know what time they will show, so we can’t do them’.

All of the mothers made various recommendations for the post-pandemic period. M5 expressed her view on the practices of the Ministry of National Education (MoNE) by saying, ‘I think the Ministry of National Education should have sent a letter to all schools during the pandemic for these children’. ‘So, that they can receive education at school if necessary. They can’t attend online education anyway.’ Three of the mothers said that universities should do something. Two of the mothers made recommendations regarding special education and rehabilitation centers. M2 stated that:

I think the special education place he attended should have done something during the pandemic. You know, these children were all at home anyway. Something could have been done outside, you know, in the cafe or in the park. Like a lesson… They do not like a lesson completely, so they can socialize. Well, there was no one outside anyway. Children would have relieved their stress and boredom.

Two of the mothers made recommendations regarding legal regulations. M4 expressed her recommendation regarding legal regulations as follows: ‘I think the things to be done for these children should be at the legal dimension. Otherwise, everything is left to the will of the people or institutions. I think this way. So I think it should be in writing’.

Discussion

In the present study, semi-structured interviews were conducted to investigate the views of individuals diagnosed with ASD and their mothers on the pandemic. The data was analyzed separately for both participant groups, and themes were created. In line with the interview data of individuals with ASD, four themes were obtained: (a) the connotation of Corona/Pandemic/COVID-19 for them; (b) COVID-19 pandemic activities; (c) measures taken during the COVID-19 pandemic; and (d) reflection of the COVID-19 pandemic on schools. The views of mothers on the pandemic and its impacts consist of two themes: (a) the impact of the pandemic and (b) changes in children with ASD during the pandemic.

Upon examining the first theme of this study, ‘Definition of COVID-19/Corona/Pandemic’, it is observed that individuals with ASD refer to the COVID-19/Corona/Pandemic as ‘disease, epidemic’, ‘staying at home’, and ‘starting a new life’. Contrary to the results obtained in this study, the study by Mutluer et al. (2020) states that individuals with ASD have difficulties making sense of the process and adapting to it. Considering the characteristics of individuals with ASD during the pandemic, it is indicated that they may experience difficulties complying with the measures taken, such as wearing masks due to their sensitivity (Mutluer et al. 2020, Stankovic et al. 2022). In this study, it is stated that individuals with ASD take the measures recommended by the Ministry of Health, such as wearing masks, washing their hands, and staying at home, under the theme of the measures taken. There is applied research on these measures in the literature. Upon reviewing this research, there are studies on teaching the rules and measures (mask use) taken during the pandemic to individuals with ASD (Sivaraman et al. 2021).

When the experiences of the individuals with ASD regarding the pandemic are examined, the first point that draws attention is that they are stressed and anxious. Other studies on the anxiety levels of individuals with ASD (Mutluer et al. 2020, Toseeb and Asbury 2022) also support this finding. Studies on determining the stress and anxiety levels of adult individuals with high-functioning ASD through surveys (Oomen et al. 2021) state that anxiety, stress, and depression scores were high in the first two months of the pandemic.

During the pandemic, Turkey implemented restrictions such as the use of alternate working hours or the transition to a home working system in some sectors; the implementation of lockdowns, particularly for those over the age of 65; the implementation of lockdowns for age groups other than 65 years on weekdays and after certain hours on weekends; the disruption of face-to-face education at schools; and the replacement of continuing education services with distance education. These restrictions have resulted in the increased time spent at home. Individuals with ASD stated that they spent time watching television and playing computer games at home during the pandemic. Findings of other studies also highlight the limitation of screen time and physical activity (Isensee et al. 2022, Meral 2022, Stadheim et al. 2022, Yarımkaya and Esentürk 2022). Also they indicated that they acquired new hobbies during this period. In the study by Yersel et al. (2021), families stated that their children with special needs mostly engaged in family activities such as painting and helping with housework. When play activities are examined, it is found that 47% of these activities are online game activities. It is seen that individuals with ASD and their families are limited in leisure activities during the pandemic, and there is a need to develop training programs in this regard.

Another significant limitation during the pandemic is the closure of educational settings for face-to-face education and the provision of education via distance education. The positive effects of the pandemic on the school lives of individuals with ASD were expressed as being able to easily ask teachers questions and being free of the obligation to follow classroom rules. According to the literature, negative consequences include having difficulty understanding and accessing lessons, as well as staying away from the school environment, which is a social environment, and their circle of friends. In their study, Cetin and Ercan (2021) investigated the positive and negative effects of distance education on both students with ASD and their parents. While the positive impacts of distance education on individuals with ASD were stated as protection from diseases, spending quality time, and flexibility, the negative impacts were expressed as changes in routines, health problems, behavioral changes, and reluctance to attend the lesson. The findings of previous studies also indicate the positive and negative aspects of distance education during the pandemic (Bozkus-Genc and Sani-Bozkurt 2022, Stadheim et al. 2022). When the impacts of distance education on families are examined, it is observed that it has positive impacts such as obtaining information, providing internal motivation, and communication with the teacher, and negative impacts such as burnout, strain, and increased anxiety level. During the pandemic in Turkey, some decisions were made regarding the processes of receiving education services and the daily living arrangements of people with special needs. Individuals with special needs, for example, can continue their education at special education and rehabilitation centers within the framework of pandemic rules, and they can go out on restricted days and hours with an accompanying person. With the decisions taken, it has been aimed to minimize the effects of the period. In the studies mentioned, it is seen that families have concerns about the disruption of their children’s education (Manning et al. 2021) and the effect of social interaction and friendship relations during the transition to school (Fox et al. 2022).

The views of mothers on the pandemic and its impacts consist of two themes (the impact of the pandemic and changes in children with ASD during the pandemic) and four sub-themes. Under the theme of the impact of the pandemic, mothers expressed both positive and negative impacts of the pandemic. As for the positive impacts of the pandemic, mothers observed an improvement in their children’s communication skills (Yazıcı et al. 2022); stated that the time spent with family members increased (Arici-Dogan and Gorgu 2022, Bozkus-Genc and Sani-Bozkurt 2022, Cahapay 2022, Majoko and Dudu 2022, Meral 2022); their children with ASD helped more with housework (Yersel et al. 2021); and their sense of responsibility increased. As the negative impacts of the pandemic were felt, mothers stated that their children experienced academic regression and their social and physical activities decreased (Garcia et al. 2021, Yersel et al. 2021).

Studies in the literature indicate that individuals with special needs cannot benefit from the distance education (Stadheim et al. 2022, Stenhoff et al. 2020). To improve this situation, it is very important to inform and support individuals with ASD, as well as their families and teachers, about pandemic. In addition to distance education, physical activities could not be carried out due to being locked down at home (Esentürk and Yarımkaya 2021). However, it is stated that studies involving physical activities for individuals or children with ASD were carried out during the pandemic (Yarımkaya et al. 2022) and that physical activities contributed positively to individuals (Yarımkaya et al. 2022).

Mothers stated that they observed physical, psychological, behavioral, and social changes in their children with ASD during the pandemic. Some mothers stated that their children gained weight during this period, and they observed more changes in their psychological conditions, such as stress, anxiety, and depression. This finding is in line with the existing literature. To illustrate, Oomen et al. (2021) conducted a study and found that they also indicated that they observed some changes in their children’s sleep patterns. Similar to the results of the study by Stankovic et al. (2022), it is observed that this behavioral change due to anxiety and stress or routine change in individuals with ASD is among the issues that are frequently mentioned by families (Colizzi et al. 2020, Manning et al. 2021, Mutluer et al. 2020, Tokatly Latzer et al. 2021, Toseeb and Asbury 2022). Studies in the literature report that individuals with ASD have high anxiety levels (den Houting 2020, Toseeb and Asbury 2022), their repetitive (stereotypical) behaviors increase (Arici-Dogan and Gorgu 2022, Colizzi et al. 2020, Manning et al. 2021), and sleep problems may occur during the pandemic (Mutluer et al. 2020, Türkoğlu et al. 2020). Contrary to this study, in their study Yersel et al. (2021) did not observe any change in children’s sleep patterns.

ASD is a heterogeneous group and includes individuals who need different levels of support. Studies show that the increased care needs of children with ASD increase the stress level of families (Manning et al. 2021).The families participating in the study stated that they could not participate in the services offered during the pandemic and could not benefit from the support of special education services. Moreover, families stated that they were satisfied with online activities and that practical sharing (with images) would be more beneficial. The families participating in the study made recommendations. Those recommendations include universities conducting research and the government preparing new regulations considering individuals with ASD and their educational and social lives. The necessity of implementing new arrangements (assigning teachers or undergraduate students to work at home) for students who cannot benefit from distance education and the creation of a support network where they can ask their questions are some of the other recommendations. Families state that their social, financial, and educational support networks decrease in pandemic (Manning et al. 2021). They also stated that they need support in many areas, such as education, social and psychological areas, and health. The recommendations of the families concerning legal regulations in this study are in the form of giving the right to take a day off for mothers of children with special needs and not leaving permission to the initiative of the institution. Institutions that provide services to individuals with special needs should improve the services provided by considering the needs and suggestions of families. Bozkus-Genc and Sani-Bozkurt (2022) differently stated that families indicate that as suggestions, increasing hygiene in schools, orientation, reducing class size, having home health services, and taking precautions for safe internet use.

Recommendations

The experiences and views of individuals with ASD and their families regarding the pandemic will contribute to the improvement of services and the development of different services in pandemic when the pandemic continues with different variants. Accordingly, considering the individuals with ASD and their families, the recommendations for implementation can be listed as follows:

• Studies can be conducted to increase and disseminate the educational content that will facilitate the pandemic for individuals with ASD and their families.

• Considering the problems experienced by families, family education can be planned, implemented, and improved by evaluating the pandemic.

• Remote applications such as telehealth can be prepared and made widespread in line with the needs of families.

• Support networks where families can receive consultation about their problems can be created, and these services can be carried out systematically.

  It is critical to investigate the pandemic’s impact on the lives of families and individuals with ASD and reveal their experiences in order to mitigate the effects of pandemic and propose several solutions. As a result, the following recommendations for further research can be made:

• ASD has a wide spectrum. Qualitative research can be planned by considering different ages, levels of support needed, and experiences of participants.

• Research on the reasons and possible solutions for not benefiting from the distance education process can be planned.

Limitations of study

Upon reviewing the literature, it is observed that there are studies on the COVID-19 pandemic and the experiences of families with children with special needs. In this study, interviews were conducted with eight individuals with ASD and their mothers, which is considered a limitation of the study. In addition, in this study, conducting interviews with individuals with ASD who can express themselves verbally and attend an educational institution with their mothers can be considered a limitation.

Disclosure statement

No potential conflict of interest was reported by the authors.