Twice A Minority: Education and Life Experiences of War Victim Refugee Youth with Developmental Disabilities and those of Their Parents in Türkiye

According to 2022 data, approximately 4 million Syrians live in Türkiye, and it is known that %24.7 of them have various disabilities. Recent research has shown that the developmental disability is one of the most common types of disability among Syrian refugees in Türkiye. We aimed to investigate the lives of refugees with developmental disabilities, who are twice a minority. Among the Syrian refugees in Türkiye, 24.7% are individuals with special needs. It was reported that developmental disabilities and post-traumatic stress disorder are the most prevalent diagnoses across the refugees. The study aims to investigate the current status and educational needs of Syrian refugees with developmental disabilities and their parents, who live in refugee camps in Türkiye with a specific emphasis on their education life. Semi-structured interviews were conducted with young refugees with developmental disabilities and their parents in the study conducted with a phenomenological approach. The content analysis conducted on the study data revealed that these individuals migrated to Türkiye due to the Syrian war, and they did not want to return to their home country. Since they lived in camps in Türkiye, they have been isolated from social life. Participants stated that they mostly required special education and health facilities and socialization. The identified problems were analyzed, and certain recommendations are presented based on the study findings


Introduction
Humans are social beings who live in groups, which leads to the development of social norms.Minority groups are those who are quantitatively lesser than the majority and live in the fringes of these norms due to their various characteristics.Minorities, due to different traits and lower numbers, encounter various difficulties of existence within social norms.This could lead to certain disadvantages in access to resources, certain conditions, and standards, which in turn affect their quality of life (Kymlicka, 1995).
The current study was conducted on the twice disadvantaged group of refugees with developmental disabilities.It can be said that the most disadvantaged group in terms of adaptive behaviours and life skills among individuals with special needs is "individuals with developmental disabilities" due to their cognitive and social characteristics.Under the umbrella term developmental disability, there is a set of disabilities characterized by physical and mental difficulties.However, in this study, the term "developmental disability" refers to intellectual disability and autism spectrum disorder who have difficulties especially in mental, social and communicative areas.
Autism Spectrum Disorder is defined as a neurodevelopmental disorder that manifests as deficiencies in social communication and interaction, repetitive behavioural patterns, and limited interests and actions (APA, 2013).Intellectual disability, on the other hand, is characterized by significant limitations observed in mental functions and adaptive behaviours; it is a type of deficiency that manifests itself in conceptual, social and practical adaptive skills (AAIDD, 2013).As can be seen from the definitions, individuals with intellectual disability and autism spectrum disorder who follow their peers behind in terms of development experience different difficulties in all areas of life.Therefore, it can be stated that individuals with developmental disabilities constitute a significant minority.It aimed to investigate the lives of refugees with developmental disabilities (intellectual disabilities and/or autism spectrum disorder), who belong to two minority groups.Refugees are individuals who are displaced due to religion, nationality, certain group memberships, war, ethnic conflicts, and environmental factors and seek asylum in another country (Shacknove, 1985).
According to The UN Refugee Agency (UNHCR), there were 82.4 million displaced people, 26.4 million refugees and 4.1 million asylum seekers in the world by the end of 2020.According to 2022 data, about 4 million Syrian refugees live in Türkiye.As of December 30, 2021, about 52000 Syrians live in temporary camps in Türkiye (UNHCR, 2022).
It is known that 24.7% of Syrian refugees in Türkiye are individuals with special needs (Polack et al., 2021).Recent studies reported that the two most common disabilities across Syrian refugees in Türkiye are intellectual disabilities and post-traumatic stress disorder (Abdulkerim et al., 2021;Karadağ & Çalışgan, 2021;Tekeli-Yeşil et al., 2018).In a study conducted with Syrian refugees in Türkiye, it was reported that 59% of the participants applied to institutions due to psychiatric symptoms and 41% applied for a disability report, 19% of the participants were diagnosed with intellectual disabilities, and 17% with posttraumatic stress disorder (Karadağ & Çalışgan, 2021).It was determined that the psychological disorder (Abdulkerim et al., 2021;Acartürk et al., 2021;Tekeli-Yeşil et al., 2018) and disability diagnoses were quite common among Syrian refugees (Abdulkerim et al., 2021;Arfa et al., 2020;Polack et al., 2021).Türkiye hosts the highest number of refugees in the world due to its geographical location (Williamson & Çetin, 2019), and the most important problem for Syrian refugees is poverty in Türkiye (Rohwerder, 2018), followed by mental disorders such as intellectual disabilities and autism (Acartürk et al., 2021;Polack et al., 2021;Sapmaz et al., 2017).
Previous studies reported that almost half of the interviewed refugees suffered from psychiatric disorders (Karadağ & Çalışgan, 2021;Polack et al., 2021;Sapmaz et al., 2017;Tekeli-Yeşil et al., 2018).Intellectual disability is common among psychological problems.It was concluded that experiences with the death and injuries of others during war and migration, and unemployment alleviate psychopathologies.These children try to cope with vulnerability and fear during the war and migration (Sapmaz et al., 2017).A study on the experiences of refugee parents emphasized the problem of access to services and mobilization at both individual and systemic levels (Arfa et al., 2020).
Studies demonstrated that the development of an education policy for refugees is political and a complex and difficult process, and Turkish curricula are based on political ideology rather than the needs of children (McCarthy, 2018;Öner et al., 2020).On the other hand, schools provide facilities for transition such as novel encounters, learning opportunities, social participation, and literacy.It was observed that systematic interventions are not included in the development of these transitions (Culbertson & Constant, 2015;Çelik & İçduygu, 2018).The refugee children are placed in regular classes in Türkiye, their disabilities are not considered in detail, and their education levels are neglected (Williamson & Çetin, 2019;Szente et al., 2006;Polack et al., 2021).On the other hand, there is also evidence that Turkish schools offer a warm and safe educational environment for refugee children (Aydın & Kaya, 2017).Similarly in Europe, Syrian refugees with intellectual disabilities and/or autism have been ignored during the last refugee crisis, they had trouble in accessing the resources, were stigmatized, the disabilities were neglected during the asylum process (Luce, 2018).
Study findings demonstrated that the most significant requirements of the refugees in Türkiye are childcare and community services.The least requested requirement is parental and social support.Family income, employment and special education requirements are among the unmet needs (Öner et al., 2020).Thus, mental problems are observed in a significant section of the Syrian refugees in Türkiye, who need psychiatric, psychological treatment and special education (Acartürk et al., 2021;Aydın & Kaya, 2017;Bal et al., 2021;Dew et al., 2020;Karadağ & Çalışgan, 2021;Öner et al., 2020).It was emphasized that basic needs should be determined and met without discriminating the refugees or individuals with disabilities, and the current status of these groups should be analyzed based on observations, interviews and examinations (Pearce, 2015;Skinner, 2014).The present study aimed to investigate the current status and requirements of Syrian refugees with developmental disabilities and their parents, who live in refugee camps in Türkiye, with a focus on their lives and education.

Research Design
Qualitative methodology, adopted in the study, is an approach where the most important instrument is the researcher, the subject is investigated in its natural environment, multiple techniques could be adopted, and complex reasoning could be discussed with a holistic approach based on participant comments (Creswell, 2007).The current study is phenomenological research that aimed to investigate the data in depth based on the interpretative paradigm.The study phenomenon was the education life of war victim refugees with intellectual disabilities and/or autism and their parents.Semi-structured interviews were conducted with the participants to collect in-depth study data.This technique can be used when the focus of their research is the subjective experience of the subject.This data collection technique was preferred because the subjective experiences of the participants regarding their educational life in a post-war country were obtained.

Participants
Qualitative research, unlike quantitative research, could focus on a sample that was assigned with purposive sampling for a deeper understanding of a phenomenon based on a relatively small group (Patton, 2002).The study data were collected from a sample assigned with criterion sampling, a purposeful sampling method.The study sample included three individuals with intellectual disabilities and one with autism spectrum disorder, and 10 parents, who sought refuge in Türkiye due to the war in Syria.The sample assignment criteria included the following: (1) Individuals who left their country due to the war in Syria (2) with intellectual disabilities or autism, or a parent with a child with developmental disabilities.Parental participants were coded as P01, P02,…..P10, and young individuals with developmental disabilities were coded as Y1, Y2, Y3, and Y4.As seen in the demographic data presented in Table 1, the parent age varied between 35 and 55.All interviewees were mothers.One parent never attended school, two parents were high school, and the rest were primary school graduates.None of the parents had a job or occupation.Interview duration varied between 24 and 16 minutes.As seen in Table 2, the age of the young individuals who participated in the study varied between 12 and 19.The medical diagnoses of young individuals included intellectual disabilities and autism spectrum disorder (developmental disabilities).They did not attend special education in the refugee camps where they lived.All participants lived in container homes.The number of siblings varied between 4 and 2. Interviews lasted between 8 and 32 minutes.

Procedure
Semi-structured interview forms were developed by the authors.The questions were determined and reviewed based on the views of three experts with PhD degrees in the field of special education and two psychologists who worked with refugees.A pilot scheme was conducted with a parent and an individual with special needs to test the draft interview questions.
Then, the authors met with the interpreter who would assist the interviews and asked the interpreter to schedule the interviews.Interviews with young individuals were conducted and recorded on October 01, 2021.The interviews with the parents were conducted between September 01, 2021, and October 01, 2021, and were also recorded.The parental interview form included 11 open-ended questions about their arrival in Türkiye, their lives in Türkiye, their experiences with their child with developmental disabilities, the rights of the disabled, the difficulties they experienced, the assistance they received, their participation in social life, and their desires for a better life.Seven open-ended questions were asked to young individuals on the same topics.

Credibility & Conformability
In qualitative studies, validity and reliability are determined based on credibility, transferability, consistency, and confirmability (Creswell & Miller, 2000;Erlandson et al., 1993;Guba & Lincoln, 1989).Credibility and conformability were tested in the current study.Credibility was determined based on the expert views during the development of the data collection instrument, the listing and analysis of the data.Coding reliability was determined based on confirmability.
Coding reliability was determined by re-coding eight randomly selected interviews by an independent expert and calculated with the Miles and Huberman (1994) formula (Reliability = Agreement / Agreement + Disagreement).Coding reliability coefficient was calculated as 89%.The codes on which the authors and the evaluator disagreed were discussed and agreement was achieved in seven codes.

Ethical Concerns
In the study, ethical approval was obtained from the Social Sciences Scientific Research and Publication Ethics Committee of the university (Date:10.01.2022No:2100078729).Furthermore, the participants signed a consent form where they were informed that participation was completely voluntary and that they could withdraw from the study at any time without a reason.

Data Analysis
Data analysis entails preparation, organization, coding of the data, development of the themes, and finally presentation of the findings based on the data with tables or in the form of a discussion (Creswell, 2007).In the study, the data were analyzed with content analysis.Content analysis is a technique in which qualitative data are analyzed with an inductive approach.Content analysis is employed to arrive at reproducible and valid inferences based on texts or other meaningful material (Krippendorff, 2004).Content analysis; It consists of the steps of preparing the raw data (casting the audio recordings), organizing the data and preparing the analysis, reading all the data thoroughly, coding the data, creating the themes, relating the themes, and interpreting the themes (Cresswell, 2014).The authors determined the codes, categories, and themes.Each interview was transcribed, the transcripts were read three times, and codes and categories were developed based on the transcripts.Then, categories were grouped under the themes.

Researchers (Authors)
The first author worked as a special education teacher for 12 years and received a PhD in special education.The first author taught dozens of learners and was in constant contact with the families of these students.In his academic career, he also conducted numerous interviews with parents.Thus, the author did not experience any difficulties during the interviews due to his professional experience and approached the participants with understanding.Also, the teaching background of the first author contributed to the clarity of the study.
The second author is also an academician with a PhD in special education.She is an expert in the education of young individuals and adults with developmental disabilities and studies the abuse and sociology of these individuals.She is experienced in conducting interviews on the educational life of refugees with special needs.The second author's studies on minority psychology contributed to the current study on the phenomenon of war victims and refugees.

Findings
Semi-structured interviews were analyzed separately for young individuals and their parents.Content analysis revealed 3 themes, 10 categories based on the data collected with the interviews with young individuals with developmental disabilities, and 3 themes and 19 categories were determined in the parental interviews.

Interviews with young individuals with developmental disabilities
The themes and their frequencies determined with the content analysis conducted on the data collected with the interviews conducted with young individuals with developmental disabilities are presented in Figure 1.As seen in Figure 1, three themes were determined: social life, support and needs, and migration.The frequencies of these themes are presented in the figure.Also, categories and direct quotes of the participants are presented below.The migration theme category frequencies are presented in Figure 2.About the reasons for migration, Y2 stated that they fled from the war as follows: "Syria was good, and then there was war, so I came."Y3, on the other hand, compared Syria as follows: "The schools in Syria were better."Y3 stated that there was no way of going back: "I will stay here.The war will be longer, it will continue, I could not go."As reflected in Figure 3, Y3 stated that school is good, I will be happy if I get a report card, in the expectations category in the support and needs theme.Y4, on the other hand, expressed a longing for food: "I want a cake, a strawberry cake."Y3 reflected their daily life as follows: "I help my mother."Y4 explained their days as follows: "I go to the coffee house."When asked about the available support, Y4 stated that no one provided any support.Y2 stated that he could not find a job despite he knows how to work.As seen in Figure 4, the most significant finding in the theme of social life was isolation.On this issue, Y2 stated that she never left the camp: "I never left because it was forbidden."Y1 expressed a desire to socialize: "I want to play in the park, then I will be happy."Y3 stated that it was difficult to find friends: "I do not have any.They do not talk to me."

Interviews with the parents
As in Figure 5 and the following figures, 3 themes and 19 categories were determined in the interviews conducted with the parents.As seen in Figure 2, 3 themes were obtained: migration, support and needs, and life.The frequencies of these themes are presented in the figure.Also, the related categories and participant quotes are presented below.

Migration theme (interviews with parents).
As seen in Figure 6, the category of war was mentioned by most parents in the theme of migration in the interviews.P04 stated the following: "The war was where we lived.They destroyed our homes, bombed them.I had 3 disabled children; we were afraid.They told us that we will be shot there and must leave."P08 stated the difficulties they experienced as follows: "Sir, we escaped from the war.We carried our child on our backs.They did not allow us to take our car, we came on foot".P10 explained how they cared for their autistic child before the war as follows: "(S)he was in special education, they were very sensitive, they took good care of children, they always allowed them to do what they want.They were careful."About going back, P02 stated that she did not want to return: "No, I would like to stay here, I will not go anywhere else, I am used to [living] here, I will stay here."As seen in Figure 7, the special education category was prominent in the theme of support and needs.In this category, P01 stated the following: "I wanted special education for my children, but they told me they could not take care of my children."P10 stated that the development of her daughter stopped: "She is quite behind now … it is not possible here.Some things are the way they are, they never happen.My daughter is behind here, she is very behind."P06 stated that they did not receive any financial support for the special needs of their child: "No sir.They do not support us; we are not citizens."P05 stated that international aid organizations offered to move them to developed countries because of their children with special needs: They came for him [disabled child].They wanted to take me to America, they said, you can go but cannot return.I asked them.For example, when my child gets sick, for education, I asked how many years will it take me to come back if I go?They said that you will go with your family, you will not come back, so I rejected the offer.
P03 stated that they did not receive professional emotional/psychological support: "No, we do not have a psychologist, no one asks us."P05 stated that healthcare was free: "I take him to the doctor, I go to the city hospital, it is free."P08 stated that there were accessible facilities, but not for disabled individuals: We could not get a home for the disabled because these were full, and some lived in those houses even they did not have disabled children, and the disabled now live in upper floors, it is extremely difficult to go down from the upper floor.
P02 stated that she purchased the self-care needs of her special needs child: "I pay for these, they were free at first, and then they were not, I always buy them with my money."P01, on the other hand, stated that they did not pay for the medicine: "They give the prescriptions and I get their pills free of charge."P01 stated that she could not reach the officials:  As seen in Figure 8, most parents emphasized social participation comes in the theme of life, since the individuals with special needs and their families lived in refugee camps.P03 stated that it was difficult for them and their children to leave the camp: "They do not let us out, they say it is forbidden.We can move within the camp, but we cannot socialize since we could not go out."P08 mentioned that she is mostly occupied with childcare during the day: "I make him (her) take a bath every day, feed him (her), change his (her) diaper, I clean the house, that is all."P10 expressed her expectations as follows: The financial conditions, no one helps.I would like to live outside, in a place of my own, it is very difficult for me to live in the camp.I want to take my child to the school, etc.I would like to pay more attention, a better life.
P06 compared their lives in Syria and Türkiye and stated that it was better in Syria: "It was fine when we were there, better compared to here, these problems did not exist in Syria.Maybe we would be better off if we stayed, sometimes that is what I say when I am frustrated."P07 argued that the conditions would be better if they were Turkish citizens: "It is the same over there if you are not a citizen.It is the same there and here: They say, maybe they will be cared more when you become a citizen."P10 emphasized the education problem on the topic of schooling, which is an important dimension of the lives of parents with disabled children: "We are in the camp.The child attends the school at the camp.They do not accept us in other schools.Because we are not citizens, so no special education school for us."P03 stated the following on the problem behavior that children with developmental disabilities could exhibit frequently: "The child hits the siblings a lot at home, and shouts."

Discussion
In the present study, the experiences of young individuals with developmental disabilities and their parents were investigated with semi-structured interviews.Three main themes; migration, support and needs, and social life were determined based on the interviews conducted with young individuals and their parents.In the interviews conducted with the young individuals, the following categories were determined in the theme of migration: the reason for migration, the comparison of Türkiye and Syria, and unwillingness to return home.Young refugees with developmental disabilities stated that they came to flee the war, the schools in Syria were better; however, they did not want to return due to the war.Similarly, in other studies, the reason for migration was determined as war (Karadağ & Çalışgan, 2021;Rohwerder, 2018;Polack et al., 2021;Sapmaz et al., 2017;Williamson & Çetin, 2019), and refugees did not want to return to their countries because they were afraid of the war.(Polack et al., 2021;Sapmaz et al., 2017;Tekeli-Yeşil et al., 2018).The present study findings were consistent with the literature.On the other hand, it could be suggested that the young refugees with developmental disabilities preferred the schools in their own countries since these individuals do not have access to education adequate for their requirements in Türkiye (Williamson & Çetin, 2019;Szente et al., 2006;Polack et al., 2021).Certain studies also reported that Turkish schools offer a warm and safe educational environment for refugee children (Aydın & Kaya, 2017).This finding was different from the literature.
In the interviews with the young individuals, the "expectations" category was prominently expressed in the theme of support and needs.Young refugees with developmental disabilities stated that they wanted to attend school, they expect to get a report card, they experienced problems in accessing food, and they missed good food such as cakes.Furthermore, they sated that they usually spent the day helping their mothers, they could do chores, but they were not recognized by anyone.Similarly, in studies where the needs of refugees with special needs were emphasized, the need for special education, lack of access to childcare and employment resources were reported (Acartürk et al., 2021;Dew et al., 2020;Öner et al., 2020).Thus, although the present study findings were consistent with the literature, they highlighted the requirements in special education, care, and employment.
One of the most significant findings of the study was isolation.Young refugees with developmental disabilities mentioned the problem of isolation in social life.They complained that they wanted to play in the park and socialize; however, they were not allowed to leave the camps.Similarly, mothers stated that they had almost no social life, they could not leave the camps, and they cannot go out like they did in Syria.Almost every study on Syrians and refugees with special needs in Türkiye emphasized the problem of social exclusion (Culbertson & Constant, 2015;Çelik & İçduygu, 2018;Polack et al., 2021;Sapmaz et al., 2017;Williamson & Çetin, 2019).The burden of this social exclusion could be described as being twice a minority due to the stigma of disability and being a refugee.
The most prevalent finding determined with the parental interviews was the category of war in the theme of migration.Almost all parents mentioned the devastating effects of the war, stating that they fled from the war, they had to leave their homeland, and experienced significant hardships.They stated that their child with developmental disabilities was very well taken care of back in Syria, and nothing was the same as before; however, they did not want to go back.Furthermore, they stated that they still bore the wounds of war and migration and required psychological support and complained that they could not receive professional psychological assistance.Predictably, in similar studies, parents also mentioned that they struggled with the effects of war (Arfa et al., 2020;Bal et al., 2021), and significant mental problems such as post-war post-traumatic stress disorder and other psychiatric disorders were observed among the refugees (Abdulkerim et al., 2021;Arfa et al., 2020;Karadağ & Çalışgan, 2021;Polack et al., 2021;Sapmaz et al., 2017;Tekeli-Yeşil et al., 2018).Based on the above-mentioned findings, it could be suggested that the most significant devastating effect of the war was the development of other psychiatric disorders, especially post-traumatic stress disorder.The combination of that disorder with an intellectual disability or autism would lead to inextricable conditions for the individual and the parents.
In the interviews, the most important issue that the parents raised was special education services, like the young individuals.Mothers stated that their children attended the camp school and could not attend the schools outside the camps.All participants emphasized that their children were behind their peers, they wanted their children to attend the school, but special education support was not available.Certain mothers stated that they had free access to healthcare, others stated that they had to pay for healthcare.Previous studies reported that the most requirement of the refugees were childcare, healthcare, employment, and special education (Acartürk et al., 2021;Karadağ & Çalışgan, 2021;Öner et al., 2020).Also, a study reported that refugee parents were satisfied with the available education in general, but they demanded Turkish language education for their children (Bal et al., 2021).Although the present study findings were inconsistent with the above-mentioned report, the demand for parental and special education was similar.Thus, it could be suggested that basic needs should be determined and met without discrimination based on the specific parameters for the disabled and refugees (Pearce, 2015;Skinner, 2014).
The present study findings are limited to the experiences and views of four young refugees with developmental disabilities and 10 refugee mothers who participated in the study.Study results generally focused on special education needs, assistance in healthcare and employment, and problems associated with social inclusion.Thus, it could be recommended to develop social policies with the collaboration of the Republic of Türkiye and UNHCR based on the study findings.Further comprehensive studies could be conducted on each field of assistance requirement (special education, healthcare, employment) that was determined in the current research.Future empirical and applied studies are required to solve the existing problems based on experiences and views of the refugees.

Conclusion
Wars affect all individuals negatively with all their dimensions.Wars have a major impact on the quality of life for individuals with intellectual disability or autism, who belong to one of the most vulnerable groups in a society.The study findings demonstrated that Syrian refugees with developmental disabilities and their parents continued to live in social isolation.This makes integration, which is significant for individuals with developmental disabilities, an impossibility.Individuals with developmental disabilities in Türkiye could benefit from special education services, while the participants of the current study did noy have access to these services since they were not Turkish citizens.
One of the significant findings of the study was the fact that international organizations offered individuals with developmental disabilities and their parents the opportunity to live in developed countries.Certain accessible facilities were available in refugee camps, but certain families with disabled members were not housed in these buildings due to coordination problems.Türkiye offers free healthcare and medicine to all refugees.However, no financial or psychological assistance was available for the disabled current study participants and their parents.The comparison of their home country and Türkiye by the parents based on services for the individuals with disabilities revealed that there were no significant differences and their future expectations concentrated on the well-being of their children with disabilities and their essential needs.Individuals with developmental disabilities were very afraid of war and wanted to stay in Türkiye.These individuals stated that they were socially isolated.Thus, although the Republic of Türkiye provides basic needs of these individuals, individuals with developmental disabilities should be supported better in economic and social terms.

Figure 1 .
Figure 1.Themes determined with the interviews with young individuals with developmental disabilities.

Figure 2 .
Figure 2. Migration theme (interviews with young individuals with developmental disabilities).

Figure 3 .
Figure 3. Support and needs theme (interviews with young individuals with developmental disabilities).

Figure 4 .
Figure 4. Social life theme (interviews with young individuals with developmental disabilities).

Figure 5 .
Figure 5. Themes determined in the interviews with the parents.

Figure 7 .
Figure 7. Support and needs theme (interviews with parents)

Table 1 .
Descriptive Data for the Participant Parents Note.ASD: Autism Spectrum Disorder; ID: Intellectual Disability.

Table 2 .
Descriptive Data for the Participants with Developmental disabilities Note.ASD: Autism Spectrum Disorder; ID: Intellectual Disability.
They would not allow me to get there.I don't know, what time comes and what time goes, they do not show my teacher, I don't know when he comes or goes, they would not let me see him."