Introduction
Children with severe disabilities, with different ways of communicating from the norm, are easily excluded from the social debate and research (Boxall and Ralph 2011; Vehmas and Mietola 2021). Severe disabilities are described as substantial or permanent intellectual disabilities combined with physical and sensory impairment and health conditions that manifest during childhood (Goldbart, Chadwick and Buell 2014). Children with severe disabilities are a heterogeneous population; thus, each child varies not only in their degree and type of disability but also in their strengths and limitations (Dada et al. 2023). They are often unable to influence their own lives by participating in discussions or by expressing their opinions. Their agency cannot become true, and decisions and actions are taken on their behalf by others (Hakala 2022). However, all persons’ human rights include the right to influence their affairs following their age (Convention on the Rights of Persons with Disabilities 2006; United Nations 1989). Everyone has the right to express their thoughts, needs, and wishes, to be heard and understood, and to interact with other people and influence matters (Fylkesnes and Ytterhus 2021).
This study explores the opportunities for influence and communication of a child with severe disabilities through the concept of agency, defined as the capacity of all humans to influence others through their verbal and non-verbal communication, including their actions (Olli, Vehkakoski and Salanterä 2012; Olli 2021). According to Olli, Vehkakoski, and Salanterä (2012), children’s agency is achieved when their needs for influence are considered and responded to. However, it is more difficult for children who do not communicate with speech to influence and make their communication heard and understood (Boxall and Ralph 2011), and adults’ influence in these situations is essential. Communication partners can give a voice to those who find it difficult to express themselves (Baker 1999).
Studies concerning the agency of children with disabilities who do not communicate through speech are rare (Brock, Schaefer and Seaman 2020; Olli et al. 2021; Tegler and Pilesjö 2023). In school contexts, children’s agency is largely dependent on educators’ actions (Bjerke 2011). Educators must hear and understand all children in their work regardless of their communication abilities, but there is little published research on the extent to which this happens (Greathead et al. 2016). According to Farmer and Stringer (2023), educators develop their understanding of children’s views in schools’ relational and social contexts. When educators collaborate, different interpretations of children’s communication are considered, leading to socially constructed understandings of children’s views.
This case study analyzes educators’ interpretations in one special classroom regarding the interaction between a child who communicates without speech and their environment with its impact on the child’s agency. The study examines Havu’s (pseudonym) and educators’ communication in classroom situations by asking two questions: 1) How does the school environment affect the communication and agency of a child with a severe disability who communicates without speech? 2) How do the classroom educators perceive, interpret, and feel their understanding of this child’s communication and support their agency? According to Olli, Vehkakoski, and Salanterä (2012, 794), ‘other peoples’ inability to understand a child’s self-expression or unwillingness to let the child have an influence may restrict the child’s agency from being realized, but it does not eliminate the existence of agency’.
Children’s agency
Children’s agency is closely related to the principles of the Convention of the Rights of the Child (United Nations 1989) and the Convention on the Rights of Persons with Disabilities (2006). The term children’s agency, while not explicitly mentioned, is arguably embedded in these conventions within the ethos of children’s agentic rights. According to the Convention on the Rights of Persons with Disabilities (2006), ‘children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability- and age-appropriate assistance to realize that right’.
The concept of agency is widely used, especially in childhood research, yet it has been criticized for being abstract, vaguely defined, and poorly theorized (Bordonaro 2012; Kaitsalmi 2024; Mentha, Church and Page 2015). According to Brock, Schaefer, and Seaman (2020), the term agency is rarely used in disability studies, which tend to prefer the concepts of self-determination and psychological empowerment. In this study, agency is understood as influencing others (Kaitsalmi 2024; Olli, Vehkakoski and Salanterä 2012) and as a process of interaction between the child, other people, and the material and sociocultural environment (Sairanen, Kumpulainen and Kajamaa 2022). Agency can increase children’s belonging and strengthen their integration in the community and society (Olli, Vehkakoski and Salanterä 2012). However, many children with severe disabilities are assigned one-to-one school assistants’ support, which can hinder the realization of children’s agency (Brock, Schaefer and Seaman 2020).
Olli, Vehkakoski, and Salanterä’s (2012) literature review found factors facilitating or hindering children’s agency in institutional contexts. The most significant factors related to professionals’ attitudes and communication with children or institutional structures and cultures. Attitudes play a major role, and sometimes professionals may be unable or unwilling to evaluate their actions and influence on children or to question their interpretations of children’s communication. According to Olli, Vehkakoski, and Salanterä (2012), seeing children’s communication problems as shared problems facilitates children’s agency, and the one institutional factor that can hinder children’s agency is lack of time. Lack of time means that the adults did not have enough time to focus on listening to children’s opinions and wishes due to the environment schedules (Olli, Vehkakoski, and Salanterä 2012).
Children’s agency is tightly connected to moral and political ideas about what kinds of agency are appropriate for children in specific cultural contexts (Bordonaro 2012). Thus, agency is not only a personal capacity or attribute that pupils either have or lack depending on their ages and disability characteristics, but it also depends on the actions of others in a person’s environment (Donaldson et al. 2023). Kaitsalmi (2024, 30) states that “the realization of the child’s agency occurs when the child’s message is received and processed, and the information is communicated to the child in such a way that he or she can feel that he or she has been heard and that his/her point of view is valued.” It is not enough to just listen to children; children must receive feedback that their communication has meaning and impact, and through their interaction, professionals strengthen or hinder children’s agency in their daily lives (Olli et al. 2021; Smith 2016). According to Jerome and Starkey (2022), children’s agency can be seen as a sliding scale from minimal to maximal; where an individual child sits on that scale depends as much on the adults and institutional context as on their own development level.
Communication partners’ role in supporting children’s agency
The child–adult communicative role is crucial when discussing children with disabilities’ agency (Farmer and Stringer 2023), and in school, educators are important communication partners (Penninga et al. 2022). According to Biggs and Hacker (2021), educators’ different values and attitudes either promote or hinder the use of alternative communication forms that support or replace speech. It has been suggested that, in addition to functional pedagogy (including communication), a deep desire on the part of professionals to understand children and their characteristics enables participation (Pesonen et al. 2023), which is a prerequisite for agency. However, communication and supporting children’s agency can be challenging for staff due to diverse classrooms in which children’s different needs (e.g., disabilities and lack of communication skills) must be accommodated (Brock, Schaefer and Seaman 2020; Penninga et al. 2022; Sirkko, Kyrönlampi and Puroila 2019).
In addition, understanding double empathy problem theory (Milton 2012) is important. This theory suggests that people, especially autistic and neurotypical people, face challenges in understanding each other (Milton 2012). This viewpoint is important to acknowledge when exploring communication between a child without speech and their communication partner. An empathy gap can occur when people with different world experiences interact and try to communicate with each other. The differences in communication and understanding cause difficulties in feeling empathy for each other (López 2022; López 2015; Milton 2012; Mitchell, Sheppard and Cassidy 2021). These problems in understanding may reflect a lack of reciprocity and mutual understanding, with communication partners interpreting others’ actions differently. These interaction dilemmas are both biologically and socially constructed (Milton 2012).
Every child has a unique way of communicating, and communication partners must get to know the person, their history, and their way of communicating (Bradshaw and Goldbart 2013; Olli, Vehkakoski and Salanterä 2012). By observing a child’s movements, eye gaze, vocalizations, and facial expressions, we can try to give meaning to and interpret the child’s views and desires (Farmer and Stringer 2023). According to Penninga et al. (2022), these signals may be subtle and idiosyncratic, and partners must know the person’s way of communicating. According to Olli et al. (2021, 273), adults’ competence in understanding children’s nonverbal communication and their ability to ‘speak the same language’ with the child are essential for realizing children’s agency. Moreover, close relationships and sufficient time for communication between staff and people with disabilities contribute to communication (Kilpiä et al. 2022; Penninga et al. 2022). Educators should sometimes withdraw from total teacher-led control and guidance in pedagogical situations and give space for children’s initiatives (Sairanen, Kumpulainen and Kajamaa 2022).
In school, many children with severe disabilities get daily support from school assistants, also called teachers’ aides or teaching assistants (Brock, Schaefer and Seaman 2020). School assistants’ qualification requirements vary across countries, and they are usually without pedagogical qualifications (Sirkko, Sutela, and Takala 2022). However, school assistants often interact directly with pupils more than the teachers (Rämä, Kontu and Pirttimaa 2020); thus, they may have more opportunities than teachers to support pupils’ communication in assistance situations. Kilpiä et al.’s (2022) study of autistic children noted that school assistants had the power to decide which pupils’ communication initiatives they would respond to. Sometimes, non-response was a conscious means of promoting other pupil-related objectives; sometimes, it was used as a punitive practice. At the organizational level, all educators should have a common understanding of supporting pupils’ communication, and organizations should prioritize developing adults’ skills as children’s communication partners (Farmer and Stringer 2023).
Methods
Context and data
This case study focuses on Havu’s communication and agency. Havu had started studying in the first-grade classroom two months before the data collection. Havu communicated by voicing and with body language and did not use any alternative and augmentative communication (AAC) methods. Havu was able to walk independently, albeit a little wobbly. They had a work chair where they usually sat during lessons. The work chair had a seat belt, wheels, and brakes, and Havu used a leg orthosis. Havu did not sit next to the table, but the chair was moved around the class according to the situation. The classroom was organized so that pupils sat facing the whiteboard and the teacher’s desk at the front. Havu was entitled to support from school assistants every hour during school days and during the morning and afternoon activities on the school premises. The school assistants changed according to the timetable. During the week, Havu worked with all the class school assistants, who moved between pupils’ desks and changed their places according to the situation.
The data consist of classroom video recordings showing Havu’s communication (34 minutes) and an interview with educators (45 minutes). The total number of communication situations between Havu and the educators analyzed was 13 (totally 34 minutes). The data were collected in one primary school’s special class in a school in Northern Finland throughout the academic year 2022–2023. The educators are wearing masks in parts of the videos due to a COVID-19-related masking recommendation in the early stages of the data collection.
The data are part of the larger data that the first and second authors collected when spending one day per month in two different classes during the school year. During the year, the researchers observed Havu’s classroom activities. For the first part of the data, they recorded video clips (a total of 31) of classroom situations from the viewpoint of interaction and communication. In the class, four children with disabilities studied and worked with a special education teacher and three school assistants called common name educators. After the entire data collection, one child, Havu, was selected for this study because, from the researchers’ point of view, their communication during the observations seemed to challenge the adults in the class the most, raising the question of how the educators could support Havu’s agency.
Research permission was sought from the city, the educators, the children, and the children’s guardians. The research process was explained in the class, and the guardians were asked to discuss participating in research with their children at home. A pictorial explanation of the research action was given at home, which could be used to help discuss with children. We rely on Havu’s parents’ assessment of their child’s consent to research. We cannot be sure how much Havu understood about the meaning of research participation. Instead of one-off consent, we emphasized thinking of consent as a situation to be asked and earned every moment (Pálmadóttir, Juutinen and Viljamaa 2018). This meant that when recording video data, we were sensitive to children’s (Havu’s) and educators’ expressions and gestures. When we observed reluctance to be photographed, we stopped collecting data in the situation. Data protection ethical guidelines were followed (Finnish National Board on Research Integrity TENK 2019).
The second part of the data consists of a recorded interview with the class staff. A stimulated recall method (Paskins et al. 2017) was used as a prompt for the interview discussions. Stimulated recall is a qualitative research method in which the interview is conducted after the activity, utilizing a stimulus related to the situation. This method can positively affect reflection on one’s own actions (Sherin and Han 2004). In this study, the stimulus was a video-recorded session of Havu and their classmates’ situation of a morning circle. The method aims for the interviewee to be able to recall the original situation as accurately as possible with the help of stimuli and verbalize their thinking related to the activity (Vesterinen, Toom and Patrikainen 2010). The video is important in the process of reflection, and the researcher must consciously keep in mind the research topic and purpose and ask pre-planned and spontaneous questions related to the topic. Thus, the interview was a conversational situation with the researcher acting as an active listener and questioner while being open to the interviewees’ understanding and perceptions (Vesterinen, Toom and Patrikainen 2010). The video of Havu participating in the morning circle acted as a catalyst for common discussion, with the classroom staff sharing their experiences and thoughts on communicating with Havu.
Analysis
The video data were analyzed in a data-driven way, without a pre-planned or pre-defined classification, conceptual framework, or research questions. Following the idea of the hermeneutic circle principles (Gadamer 2004), the analysis process was inductive, clarifying the findings in the process of moving back and forth between watching videos, discussing, and reading theory. In the first phase, all three researchers learned the videos by watching them together. Pseudonyms were created for the people in the videos. During a joint discussion, the researchers decided to focus on the communication of one child, Havu, who did not communicate with speech at all and with whom, from the researchers’ point of view, communication seemed to be the most challenging for staff.
In the second phase, Havu’s communication situations were watched several times, and the events in the videos were thematized. The identified subthemes were interaction initiatives, pupil–teacher relationships, teachers’ actions, supporting communication, Havu’s empowerment, ignoring, controlling, different contexts of communication, daily structures, material environment, using the body in communication, and aids. The researchers then discussed these issues in the data. The research questions were set as the analysis became more detailed. As the study’s focus shifted to Havu’s communication and agency, the first research question was set: How does the school environment affect the communication and agency of a child with multiple disabilities who communicates without speech?
In the third phase, the data analysis was continued by summarizing the subthemes. Three main themes of relations, body language in communication, and teaching practices as a communication reducer were compressed. In this phase, the data were reconsidered from the perspective of these themes.
The second research question—how do the classroom educators perceive, interpret, and feel their understanding of this child’s communication and support their agency?—guided the analysis of the staff interview, which utilized the stimulated recall method. The data were transcribed verbatim (22 pages of text) and analyzed through inductive content analysis methods (Schreier 2012). The data were read, and handwritten notes were made using MS Word’s comment tool. The document was coded, and the codes (child’s initiative, expressions, actions, reactions, body language, skills, and adults’ understanding) were merged into five subthemes through thematic analysis (Braun and Clarke 2006). The subthemes, which were inductively derived from the data after combining codes and reviewing subthemes, were discussed by all the authors. The subthemes were adults’ difficulties of understanding and the double empathy problem, individuality in communication, body language and use of concrete tools are emphasized in child’s expressions, motivation as the core of communication, and pedagogical approaches to communication.
After analyzing the dataset separately, the researchers discussed together the identified subthemes. As the subthemes in both datasets were similar, they were combined into five main themes (Figure 1).
Figure 1
Subthemes and main themes.
In the results, the quotations are translated from Finnish to English. Please note that T = Teacher, SA1, SA2, and SA3 = School Assistants 1, 2, and 3, and R1 and R2 = Researchers 1 and 2 (i.e., the article’s two first authors).
Results
The double empathy problem
Havu’s and the educators’ double empathy problem was reflected in both data, with difficulties in understanding at many levels. In the videos, Havu seemed not always to understand what educators were saying and doing. In one of the 13 videos, the educators were wearing masks due to COVID-19, which may have further complicated communication between Havu and the educators. A feeling of misunderstanding or not understanding the child’s expression was also evident among educators, as the teacher described: ‘I remember in early autumn an awful lot of things that things flew, and cards flew, and everything flew. We didn’t understand for sure, and they didn’t understand’ (T).
The adults interpreted Havu’s attempts to interact or communicate primarily through what annoyed Havu or where they had experienced negative emotions, as negative emotions were, according to the staff, much easier to interpret and perceive. The staff reflected that it was easier to understand the child’s negative emotions. What helped the adults understand or diminish the double empathy problem was pupil knowledge.
The class starts with a collective morning meeting, and the familiar morning song begins to play. The song is listened to via audio. Neither children nor adults sing, but they ‘play’ the song with their hands, making signs that fit into the song. Havu recognizes the music and starts bouncing and making a lot of noise as he sits in the work chair. Noises and bouncing continue for a long time. The second researcher asks the school assistants why Havu was doing that. The school assistant answers that Havu is enthusiastic and likes the song. (Havu and remote controller)
Without pupil knowledge, this situation might make an outsider feel that something is wrong with Havu, and the behavior could have been interpreted negatively. Pupil knowledge is seen as a primary factor in overcoming problems of understanding or double empathy in interactions.
T: Because it gets easier with that pupil knowledge. Like last autumn, it was really difficult to say in the beginning. We didn’t know at all, didn’t know someone’s tone of voice to see if this was joy or what this vocalization is. But now it’s already kind of easier, but we don’t know if, a pupil who can’t speak, and then we don’t know what’s annoying them if we don’t recognize this annoying voice. Then we don’t necessarily know it, and we can only guess it and then make changes.
Pupil knowledge is thus essential when trying to support the agency of children with disabilities who do not communicate by speech.
Relations with people, spaces and objects
Havu’s relations with educators and material dimensions featured strongly in the data, influencing both Havu’s communication and agency. Havu did not carry out communication initiatives with other children in the videos, even though Havu actively watched others’ actions and seemed interested in others. The double empathy problem also occurred between Havu and other children. However, other pupils tried to make some contact with Havu. One of the pupils, the organizer of the morning lesson, also tried to involve Havu by showing Havu a picture card on the lesson’s topic.
The classroom is in the morning session. Havu is sitting in their work chair at the back of the classroom, watching intently as the teacher and organizer at the front of the class go through the day’s agenda. The organizer comes up to Havu and shows them a picture card describing the lesson content. Havu does not react to the pupil or the picture at first but sits still. The organizer begins to wonder a little about the situation and looks to the educators for confirmation. The teacher asks the organizer to show the picture to Havu a little closer. Havu starts to make a noise. After a moment of making a noise, they pass their hand over the picture, and the organizer puts the picture on the board. (Organizer)
In whole-class lessons, Havu’s agency possibilities were limited, with Havu’s participation more ostensible than influential. The work chair defined Havu’s communication and agency possibilities. Havu’s possibilities to move, show, and touch were limited. Havu was moved from one place to another without anyone communicating with them, as seen in the next example.
Havu is sitting in their work chair in class. It is their turn to assist the teacher by presenting the daily timetable. The school assistant pushes Havu’s chair to the front of the classroom next to the blackboard, and the school assistant puts on the brakes of the chair. Without saying anything to Havu, they move to the other side of Havu. (Day schedule, A)
The educators moved Havu from one place to another, and in these situations, there was little communication with Havu, with attention focused on the work chair. Supporting Havu’s spontaneous communication was seemingly not considered part of the school assistants’ collective task during whole-class activities.
Considering individuality, individual traits, and individual habits was, according to the staff, essential for increasing understanding, as one assistant described: ‘So it’s just more individually trying to help that pupil where that pupil needs that help’ (SA3). The educators described how they needed to pay much attention to individuality and the situation.
SA3: It kind of depends on which pupil, who needs what kind of help and support, so I am able to register what’s happening, and I need to listen and I need to focus. That is, that you should sit in between the pupils, so there won’t be something jostling around with each other. That the attention should be paid to the teacher. Or is it that I need to interpret to the pupils more what’s happening or help with the pics or what the situation requires then?
Havu’s and the educators’ way of communicating differed between a joint classroom situation and a one-to-one teaching situation. Havu’s communication and agency were seemingly made more possible in one-to-one teaching sessions, as in the next example.
Havu and the school assistant are in a small space together. They sit side by side at the table. The school assistant reads a picture book and shows Havu the pictures at the same time. When reading, the school assistant looks at Havu and Havu’s reaction. Havu answers by voicing. Havu pushes the book away and expresses that they don’t want to read. In the next moment, Havu is interested in reading. They want to read together, and, to express this, they take the school assistant by the hand. Havu focuses on a shared reading moment. At all stages of the reading session, the school assistant verbalizes Havu’s actions and interprets what Havu wants through their actions. After the reading session, Havu still looks at the book by themself, turns it around, and strokes the book. (Reading a book)
In this example, Havu’s and the school assistants’ relations looked strong, and using the body in communication was strongly present in Havu’s communication and agency.
Using body language
Body language’s importance in promoting or inhibiting communication and thus agency was strongly reflected in the data. Havu used extensive body language in communication, including shaking their body and stretching their legs when sitting on a work chair and trying to catch things in their hands. The educators did not seem to clearly identify what Havu’s gestures and expressions meant.
SA 3: So you try to go into that situation a little bit more to see what’s going on in it and what’s going on around that and what those sounds can be and whether they’re the ones that they are excited about something or just that they want out of the situation or otherwise. So you notice it a little bit from the gesture language, that if someone somehow feels like they want to get out of the situation, so they take your hand and like that they put on a [work chair] belt.
T: Because they had a lot of that increased self-will. That they just know how to grab our hands and pull over there and now let go of this.
The educators also used touch in communication, especially when trying to curb Havu and their loud and forceful expression.
Havu is sitting in the work chair near the whiteboard, and it is Havu’s turn to assist the teacher in showing the daily schedule. Havu is making a lot of noise, and the teacher takes them by the hand. At the same time, the teacher talks to the other pupils in class. The teacher starts showing the individual cards with the lesson program. They first show the card to Havu, who slaps the picture with their hand, and the teacher turns the card over for the other pupils to see and say the topic. This repeats several times. During the session, the teacher must discuss with other pupils. The teacher takes Havu by the hand many times and starts stroking them, still looking at the class. Havu calms down. (Daily schedule, B)
Tickling and stroking were also used to reassure Havu to move in situations where it was not desirable.
The places of educators, especially school assistants, in the classroom also impacted communication. The school assistants’ places varied, as they used mobile working chairs. However, in the video data, they were often seated so that Havu had no chance to make eye contact with an assistant. Sometimes Havu reacted to this by trying to turn their body and gaze in the assistant’s direction. However, Havu’s work chair prevented them from turning.
The school assistant sits behind Havu [mask on face]. Havu tries many times to turn, and they look for a school assistant, but the school assistant doesn’t react. (Havu and remote controller)
Positioning school assistants behind children, including behind Havu, and the adults’ choice of being quiet and only signing were practices providing no possibility of communication during singing moments, raising the question of whether Havu would have wanted to share the joy of the morning song with the school assistants. The masks worn by the educators for COVID-19 also made communication even more difficult, preventing their facial expressions from being seen by Havu. The importance of gesture language, physical activity, body language, and object communication was emphasized, especially in self-expression. In the adults’ situation, gesture language and being sensitive are essential ways of self-expression with children who have no speech or very little linguistic communication. Physical contact can be a form of body language, and the example illustrates how an adult interprets based on the child’s gesture language.
Pedagogical perspective on communication
The school’s and classroom’s daily structures largely determined the communication and, through it, Havu’s agency. In supporting communication, pedagogical solutions were emphasized, which were implemented using traditional means (e.g., anticipation and structuring). Structuring was considered important for the functioning of everyday situations. Structuring was planned and organized by adults and then learned by children. Situations and how to act in them were also taught systematically and then learned, and they were essential for the class’s functioning. For example, the morning circle, which was similar every day, was perceived as functional and was maintained, even if it did not support the individual child’s communication initiatives and thus agency.
T: And then waiting for that morning circle, they are really in such a steady state, and they know that the morning song is about to start, and they are sitting down. There was that voice for me at the end, so it wasn’t that satisfied voice, but it was like let’s continue already, that is, let’s move on.
If there were changes to everyday activities or routines, they were anticipated and planned. Such changes could confuse the child.
SA 3: Well, we’ve had those trips [SA 1: going to the swimming pool, for example], trips that we leave straight in the morning, but we’ve had pictures for that purpose, but I don’t know if we’ve had such a thing that it would have turned into total chaos.
T: Well, it seems to me that when there is something like staff meetings, and then all our assistants are in a meeting, and then a guest or two or substitutes will come to us. That’s when you see that now it’s not working because we can’t go with the basic routine.
In classroom situations, the focus was mainly on traditional teacher-led instruction. The school assistants’ role was only to assist Havu, which reduced the number of responses received to Havu’s communication initiatives. This was reflected in the order of the classroom and the school assistants’ classroom positioning.
It’s time for a morning song. The teacher sits at the front of the classroom, and the pupils take their places. Havu sits in a desk chair at the back of the class. Havu’s school assistant sits behind them. School assistants have masks on. The adults in the class and some of the students sing and gesture along with the words of the song. All eyes are on the teacher. (Singing by sign)
Communication teaching also plays an important role in educating pupils with intellectual disabilities. At the beginning of the school year, it had been planned to use object communication with Havu, but its systematic use had been abandoned because Havu seemed to begin to recognize everyday situations and places in school, as the teacher explained:
T: And at first, when Havu came, there was talk about object communication, that every time you go out, you must show a glove and when you go to eat show a spoon, but we didn’t use them. Then we talked about it with the guardian and said yes, it doesn’t matter if there’s no problem and he likes to go and he’s leaving, and yes, he knows where we’re going. And Havu understands probably about our routines. And they found their way to the canteen once when we were going to eat, so they knew all the turns.
However, Havu used object communication on some occasions to express themself.
SA 3: Yes, and then there you go, the keys are around Havu’s neck, and you’re going to take [T: exactly] them to the sensory room. Havu runs up to the door, takes the keys, and shows you that here you go.
Motivation is at the core of interaction
The staff reflected that there were many ways of expressing themselves when the child was motivated toward an action or situation. The child’s own will and desire to listen and interact appeared differently to adults when the child had the desire for themself and was motivated.
T: And then if they have that strong desire to get somewhere, they think about me, the rest doesn’t matter. It’s so strong that I want that. Even if the cabin [in the school hall] they want to sit in from time to time, then it’s just a bet.
…
R2: Yes. That is interesting. I wonder if they like chaining things somehow or knowing [A 3: connects], or even if that’s not a pleasant thing.
SA 3: In some ways, I think that’s how Havu connects because they can just do and go and show me like that, and just this kind of computer and these devices and this kind of stuff is real. It seems pleasing to them.
Havu was particularly interested in digital devices and looked for situations in which they could get their hands on them.
Pupils and educators are in the sensory room. Havu is lying in a sack chair. On the big screen, different patterns are moving, and music is playing. Another researcher is filming the situation on their phone. Havu gets up from the chair and starts to move. The school assistants try to stop Havu from moving and put them back in the sack chair. However, Havu dodges and comes to the researcher, trying to take the phone from his hand. Havu is interested in the phone. (Sensory room 7)
These situations in which Havu was motivated by technical devices could be particularly fruitful for practicing interaction and communication and supporting Havu’s agency.
Discussion
This study explored how the school environment affects communication and, through it, the agency of a child with a severe disability who communicates without speech. We wanted to discover how classroom educators perceive, interpret, and experience their understanding of this child’s communication and through it support their agency. Havu’s opportunities to communicate, be understood, and thus exercise agency varied in different school settings. In whole-class situations, opportunities for reciprocal communication were scarce. Havu’s way of expression (loudly and through body language) might disturb other pupils and adults and was not encouraged. Rather, Havu was calmed down (e.g., through touch). The educators understood that this was Havu’s way of communicating, but the class situations usually prevented them from continuing toward interaction.
Although Havu’s method of communication was identified, there were challenges in understanding and a double empathy problem (Milton 2012). We should regularly reflect critically on our interpretations of the child’s communication and their accuracy if the child is unable to express their will verbally. Pupil knowledge helps in understanding the child’s communication. However, we should consider whether the interpretations made are detrimental to the child’s communication if the same interpretations are used all the time, as the child’s thoughts and preferences may vary. While developing emotional relationships between pupils and educators takes time (Penninga et al. 2022; Hanley et al. 2023), it can facilitate the understanding of the child’s communication.
The school’s daily routines (e.g., morning circle) did not enable Havu’s free communication in class. This was in line with previous studies (Olli, Vehkakoski and Salanterä 2012; Smith 2016) in which institutional structures and cultures, as well as staff, either strengthen or hinder children’s agency. In whole-class teacher-led activities, the school assistants’ role was limited to assisting the pupil to move, even if it was they who should have had the opportunity to communicate reciprocally with Havu. This reflects school assistants’ classroom role, which is usually limited to helping teachers and assuming non-pedagogical responsibilities (UNESCO 2020), especially in teacher-led sessions (see Kilpiä et al. 2022). This finding differed from Rämä, Kontu, and Pirttimaa’s (2020) study of morning meetings in a special class for autistic pupils, in which most communication took place between pupils and their personal school assistant, although the teacher led the situation from the front of the class.
In one-to-one situations with school assistants in separate settings, there was seemingly more room for Havu’s mode of expression, action, and realization of agency. In such situations, faint traces of dialogue were observed, which both participants can create to influence the situation and the course of the interaction (Kaitsalmi 2024). In these situations, the school assistants seemed interested in Havu’s expressions, creating opportunities for Havu to express their own will. Things and situations that motivated Havu contributed to Havu’s communication initiatives with educators.
Interaction with the classmates remained hidden. Traditional ways of supporting classmate interaction through joint chats and exchanging news did not support Havu’s interaction with their classmates. This might reflect the classroom structure. In class situations, Havu sat in their work chair and could not move freely around the classroom. However, to support communication and agency, educators must give children room to create their relationships (Olli, Vehkakoski and Salanterä 2012). For supporting children with disabilities’ communication and agency, educators need support and situational training on how to best support the child’s development. Training can affect positive changes in the communication and interaction of staff working with people with intellectual disabilities (Ware et al. 2024). In addition to supporting children’s communication and agency, it is important to pay attention to the classroom culture, which creates possibilities for communication and agency. Establishing classroom environments and structures that support all children’s agentive behavior is important (Alper and McGregor 2015).
This study has limitations. We tried to be sensitive when gathering data through video recording, considering consent as situational (Pálmadóttir, Juutinen and Viljamaa 2018), but we cannot be completely sure whether we correctly interpreted the child’s reactions in these situations. There was a relatively short period of video footage, and the video material was mainly collected in classroom situations, limiting the picture of Havu’s communication situations and agency conveyed by the material. The image of Havu’s agency came mainly through the educators. Moreover, the researchers’ preliminary understanding might have affected the data collection and interpretations. In the future, carefully targeted research is needed on the communication and agency of children with severe disabilities who do not communicate verbally. Additionally, the impact of school culture on children with disabilities’ participation should be studied. Further studies are also needed on school assistants’ roles and experiences in communication with pupils with severe disabilities.
Conclusion
In school settings, balancing one pupil’s communicational situations with those of other pupils in class is not always easy for educators, and the school’s daily structure may hinder communication possibilities even if it has the opposite purpose. Educators of pupils with disabilities should remember the importance of supporting children’s agency in school settings. Children with disabilities’ agency and communication must be viewed as relational, body-language, and non-verbal phenomena (Gjermestad, Skarsaune and Bartlett 2023) that are individual. Understanding the double empathy problem (Milton, 2012) is also important for adults’ understanding of the child. Every child has the right to express their thoughts and needs, to be heard, and to influence matters (Fylkesnes and Ytterhus 2021; United Nations 1989). Achieving this goal will be helped by educators’ genuine willingness to learn to understand the communication of the learner.
Acknowledgements
We would like to thank Havu, the students in the class, and the educators.
Competing Interests
The authors have no competing interests to declare.
Author Contributions
The first and second authors collected the data and analyzed the video data. The third author analyzed the interview data. The first author took the main responsibility for writing the article, while the other authors commented on the text. All authors held joint discussions on the results and throughout the article’s progress.