How children with autism spectrum disorder perceive themselves: A narrative research

3.1 Summary of study participants

First, seven boys agreed to participate in this research. Their dialogs about themselves were divided into two groups based on how to interpret the speaker's meta-messages; three children's meta-messages were interpreted through playing together, and four children's meta-messages were interpreted through exchanging words. In order to collect more data, I added one more child to each group. The participants were nine boys (age 8–18 years), including two sets of brothers (Table 1), who were diagnosed with pervasive developmental disorders, autism, Asperger's syndrome, or other conditions collectively termed ASD. Participants also included children who were not diagnosed but displayed communication difficulties according to their parent. One boy knew his own diagnosis. The verbal communications of the nine children had their own characteristics (Table 1). All of the children had favorite leisure activities; for example, watching anime or power rangers on TV, watching moving images of trains, playing internet games, playing trading card games, drawing characters of anime, looking at maps and timetables, and so forth. Occasionally, the children and their mothers met the author at voluntary groups consisting of a child with developmental challenges and family. The analysis of the nine children no longer created new categories. Therefore, it was judged that the data necessary for the analysis could be collected.

TABLE 1. Introduction of participants Namea, age, gender Conversation time, date Whether the child's mother attended the conversations Friendship at school Level of verbal communication Groups of how to interpret speaker's meta-messages. Playing together/ exchanging words Affiliation Kenji, 12 years, M

1st 41 min. Aug. 2014

2nd 49 min. Oct. 2014

Always He did not talk much with his classmates. He fast talked short sentences. Playing together School for special needs education. Osamu, 16 years, M

1st 78 min. Aug. 2014

2nd 60 min. Oct. 2014

No attendance He never talked to his classmates at high school. He spoke with a unique intonation. Exchanging words Employment Ryunosuke, 8 years, M

1st 76 min. Aug. 2014

2nd 92 min. Sept. 2014

Sometimes He did not talk much with his classmates. He spoke in short sentences. Sometimes verbs were used differently. Playing together Elementary school Astushi, 16  years, M

1st 54 min. Aug. 2014

2nd 73 min. Sept. 2014

No attendance He often spent time alone at high school. He whispered. Sometimes the word order was different. Exchanging words High school Seishi, 8 years, M

1st 40 min. Sept. 2014

2nd 58 min. Nov. 2014

Sometimes He had a lot of trouble with the children around him. He speaks well. His words had a unique meaning. Playing together

Special needs

Classes in elementary school

Ranpo, 12 years, M

1st 28 min. Aug. 2014

2nd 81 min. Nov. 2014

No attendance He talks to his friends. He speaks well. Exchanging words Elementary school Doppo, 10 years, M

1st 20 min. Aug. 2014

2nd 44 min. Nov. 2014

No attendance He talks to his classmates. He speaks well. Exchanging words Elementary school

Junichiro,

18 years, M

1st 103 min. Apr. 2017

2nd 99 min. Apr. 2017

No attendance He was spending time alone in high school. He speaks well. Exchanging words High school Chuya, 10 years, M

1st 41 min. Jan. 2018

2nd 46 min. Jan. 2018

Always He did not talk to the children around him at school. He uses words. Sometimes there were words that were out of context. Playing together Special needs classes in elementary school a All names are pseudonyms. Kenji and Osamu are brothers. Ranpo and Doppo are brothers. 3.2 How children understand themselves in terms of relationships with others

There were eight categories of how the children perceive themselves (Table 2). The conversations within quotation marks are excerpts from the dialog between the children and me. Remarks within parentheses are my own words to clarify the meaning of the dialog or the child's or my actions.

TABLE 2. Categories and narrators Categories Narrators 1) There is sadness in not being able to share happiness with the other person

Kenji (12 years)

Osamu (16 years)

Ryunosule (8 years)

Junichiro (18 years)

Chuya (10 years)

2) Talk with friends who share their communication arrangements

Kenji (12 years)

Ryunosuke (8 years)

Junichiro (18 years)

Chuya (10 years)

3) There is a belief to form profound friendships

Seishi (8 years)

Junichiro (18 years)

4) Becoming aware of one's own strength and way of thinking through exchanges with others

Astushi (16 years)

Ranpo (12 years)

Doppo (10 years)

Junichiro (18 years)

5) Explore positions to be a member of a community

Osamu (16 years)

Astushi (16 years)

Seishi (8 years)

Doppo (10 years)

Junichiro (18 years)

6) Understanding the growing interest through encountering matters of interest and the eventual ending of such interest

Osamu (16y)

Ryunosuke (8 years)

Ranpo (12 years)

Junichiro (18 years)

7) “Personality” and “problematic matters” are two sides of the same coin

Ryunosuke (8 years)

Astushi (16 years)

Seishi (8 years)

8) Acquired skills to get past troublesome matters

Kenji (12 years)

Osamu (16 years)

Astushi (16 years)

Doppo (10 years)

Junichiro (18 years)

The following describes the children's interaction with others. Three children, Ranpo, Doppo, and Junichiro, interacted with friends. Of them, Ranpo and Doppo had some friends at school. In contrast, Junichiro had continued interacting with friends he knew since he was little, but said, “I can't make even a single friend at high school.” Four children, Osamu, Ryunosuke, Atsushi, and Chuya, almost never interacted with friends. Osamu said, “I have not said a single word to my classmates in my three years at high school.” Kenji and Seishi interacted with other children, but often ran into problems. Seishi changed elementary schools once because of problems with friends. The following describes the children's social leisure activities. Three children, Ranpo, Doppo, and Junichiro, did activities with friends. Two, Kenji and Osamu, did activities with their brothers. Two others, Ryunosuke and Chuya, only did leisure activities with their parents. Atsushi and Seishi did not do leisure activities with anyone.

3.2.1 There is sadness in not being able to share happiness with the other person

The children wished to communicate to others events that occurred and their feelings, and to share joy and emotions. However, the children did not know the tricks in communicating their experiences or feelings, and were frustrated or felt sad that they could not empathize with the other person.

During various occasions within my dialog, Chuya (age 10) asked me, “isn't that amazing?” “was that good?” many times, asking for my empathy. Chuya showed me photographs of drawings on the platform of a train station one by one, telling me “two deer” or “a tiger reading a book.” Many animals were drawn on this platform, and I knew about these drawings since I had looked at them ahead of time. We talked about the photographs of the drawings on the platform for a while. Chuya showed me a picture of a chicken drawn on the platform and said “it's a chicken.” I then replied “you're right. There's a chicken.” Chuya then asked me “isn't it amazing?” This was the first time in this dialog that Chuya asked me, “isn't it amazing?” I realized that he had collected all the pictures of the animal drawings on the platform and replied “it's amazing!” Chuya then asked “was that good?” to which I replied “it was great!” The dialog between Chuya and me did not make sense from a verbal interaction perspective. However, Chuya and I shared a sense of achievement through this exchange. The children had matters that they wanted to tell others, and they wanted to share their thoughts.

However, the children could not smoothly communicate their feelings to the other person without generating misunderstandings and felt dejected about it. After the dialog with me, Osamu said “It was the first time for me to talk to like this. I haven't talked so much since junior high school. I'm glad I could talk about what I thought was difficult to say.” He told me that he had never talked to his classmates in high school. He said “I can't speak. I don't know why. I can't think about anything.” “I don't know why. Maybe, I am nervous or I am embarrassed.”

In a dialog with me, Kenji (age 12) repeatedly said “never mind, I don't want to talk about it because you don't know about it.” When I asked why, he looked frustrated and painfully said “well, I can, but I can't say that! Umm… no, I can't say it!” When his mother who was nearby asked Kenji, “Do you feel like you might want to talk about it if it's with someone who knows (about an event they want to talk about) because you can then have a conversation?” he replied, “yes.”

3.2.2 Talk with friends who share their communication arrangements

The children had their own communication arrangements and conversed with friends who could share these arrangements. The communication arrangements were the promise for the same understanding of the meaning of the child's words used in the dialog. The arrangements could only be shared by many dialogs with the child.

Junichiro (age 17) described his conversations with his online gaming friend. “We mainly talk, like we talk and also play games.” Whether he sees his friend, or whether it is through gaming, was not an issue, but “basically, it has to do with the person.” He said “(that person) understands any topic, so it's comforting to talk to (that person).” In online gaming, certain movements of avatars could only mean a certain thing, and only his friends understood this. In the dialog of online gaming, compassion among friends could be sensed through cooperatively proceeding in the game, and there were also arrangements in their dialogs that only friends could smoothly understand. Ryunosuke and I shared an understanding of the meaning when we talked about maps and railways and could convey what happened there or how we felt about it. We could share Ryunosuke's memories that were scattered throughout the map, and we could play together by seeking various discoveries on the map (Yamamoto, 2019).

3.2.3 There is a belief to form profound friendships

The children held a belief in their own way to cherish the friendship with people they have met and to extend their friendships.

Seishi (age 8) told me at the first dialog that he could not forgive a girl who was destroying the biotope pond and bullying living beings. Later, his mother talked to the girl and found a way to reconcile them, and Seishi was therefore able to reconcile with the girl. At the second dialog, Seishi happily told me, “I became friends with that girl!” When I asked, “can you tell me how you became friends with her?” Seishi said “I put Ultraman's heart in her!” using the worldview of Ultraman. He explained to me that Ultraman's heart means protecting natural environment and living creatures. Seishi talked, using his own words, that he became friends with the girl by maintaining the same view of taking good care of the biotope pond.

3.2.4 Becoming aware of one's own strength and way of thinking through exchanges with others

The children gained confidence through acceptance by others and found their own way of thinking by talking to others about themselves.

Junichiro said he “enjoys” talking to others. When I asked, “what part of it do you enjoy?” Junichiro said, “Like becoming aware of things I don't know by talking to someone else. (omitted) I talk about whatever I want to, and the other person sees it in a different way, and I realize, oh, I guess you can see it that way too,” talking about how his own way of thinking is established by conversing with others.

3.2.5 Explore positions to be a member of a community

The children, in order to participate in a community of peers of the same generation, carefully observed the flow of dialog and interpersonal relations, thereby exploring their own position.

Junichiro said “I wondered why I couldn't talk to my classmates. So I listened to what they were talking about. They were talking about something that was only shared within their group. For example about some group events that nobody outside their group knows about. So! So I couldn't join their conversation. I realized it.” Then he said “I feel like everyone except me is connected.”

Atsushi (age 16) talked about the conversation among his club mates in high school. “If I join the conversation, it's like I'm ruining the atmosphere because I'm not good at talking.” “I watch the flow. Should I say something? Then I think, maybe I need to read between the lines? It seems like there's a lot of excitement now, or there's some interesting story. I was thinking maybe it's better to just listen (in that situation) to that story.” Atsushi was sensitively aware of the changes in the atmosphere of the dialog that arises when he speaks. He emphasized the continuation of conversation without strangeness, and thought about his own positioning in how to participate in the conversation.

3.2.6 Understanding the growing interest through encountering matters of interest and the eventual ending of such interest

The children found an interest they can immerse themselves in through encountering and being stimulated by an event or object that draws out curiosity. The children also knew that the interest they can immerse themselves into does not continue forever but ends at some point in the future.

Ranpo (age 12) repeatedly played card games by himself. Ranpo said that this card game ends in 1 month and that the purpose of the game is to have the same winning rates for each deck (the card set) by repeating the game. The second session of our dialog was exactly the last day of this tournament. When I asked Ranpo the results of the tournament, he replied with a fresh expression, “This deck won. Yes. Victory to them.” Thus, this tournament ended in 1 month, just as Ranpo predicted. Osamu replied, when I asked about the anime he was previously interested in, “that (interest) is not a fad I'm researching right now. That fad has passed.” Osamu then said, when he encounters matters he is interested in, such as a newly released game, “a fad starts, like I'm on fire.” He replied that he knows when there is a fad starting, and that he knows that the fad will eventually end.

3.2.7 “Personality” and “problematic matters” are two sides of the same coin

The children's personalities and their problematic matters are associated inseparably with each other. The children sometimes suffer from interpersonal difficulties caused by their unique ways of expressing themselves, which they consider an integral part of their personality.

Atsushi (age 16) spoke in almost a whisper in the dialog with me. I then asked him why he spoke in a whisper. “I think it suits me better.” replied Atushi, “It's easier to talk that way.” However, speaking in a whisper caused him problems. I also asked what trouble he had at school. He simply said “everything”. His “everything” meant every situation in which he had to speak as clearly as other typical students. For example, he had to shout when dancing in class as other students did, which he could not. He also said “I don't like it. Where ever I have to use my voice.” “I am not good.” at using a loud voice. He was comfortable in a whisper, which he thought was his personality. However, what he wanted to cherish as his personality was not favorably accepted by others, which made him very uncomfortable. Nobody knew that he was thinking that whispering suits him.

3.2.8 Acquired skills to get past troublesome matters

The children made an effort to acquire skills to get through events that do not unfold as expected or troublesome matters in interpersonal relationships. The skills acquired by the children included, for example, devotion to listening, avoiding places where everyone is present, enduring patiently, talking to self to calm down, and reflecting on self by talking to others.

Doppo (age 10) said that being scolded by his mother was a stress source and pointed at an illustration of an angry face to describe his emotion at that time. When I asked, “how do you feel when you are like this (pointing at an illustration of an angry face)?” Doppo responded, “I want to feel relieved. I want to be by myself.” He then said he started playing tennis to avoid becoming too stressed. Doppo explained by pointing at facial illustrations in order to show how his feelings change and calm down by playing tennis. Doppo made an effort to reset his mood and was aware of the changes in his own emotions. Kenji liked playing on the swings at school. However, he often ran into problems with the other children because he could not wait his turn. To avoid these problems, he decided to stop using the swings on weekdays and instead go to school on the weekends when no one was there to use the swings. Only his mother knew that the real reason he would use the swings on weekends was not that he disliked the swings, but that he was avoiding problems with others.

The relations between the categories are shown below. The children were able to anticipate that their repetitive behavior or interest in one thing would end someday (e.g., Ranpo, Osamu). The children hoped to share their feelings (e.g., Chuya, Osamu,Kenji), and they could talk with friends who were sharing their communication arrangements (e.g., Junichiro, Ryunosuke). On the other hand, the children experienced sadness in being unable to share their feelings with others (e.g., Osamu, Kenji), and the solitude that they could not be connected with anyone (e.g., Junichiro, Osamu). The children knew, through interaction, that they were different from others; they made efforts to behave correctly as a member of society (e.g., Atsushi). The children have acquired skills to get past troublesome matters (e.g., Atsushi, Doppo, Kenji). They were also sometimes silent listeners in conversations with people (e.g., Atsushi), and they avoided going to places where everyone was present (e.g., Kenji) etc. However, people around them did not know the real reason why they behaved that way (e.g., Kenji). The children had difficulty making themselves understood by people around them; their own personality, including what they thought was their strength, sometimes caused them interpersonal difficulties (e.g., Atsushi).

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