MLS EDUCATIONAL RESEARCH www.mlsjournals.com/Educational-Research-Journal ISSN: 2603-5820

Educational Research Journal 2017, Vol 1 n. 1;

Abstract

In our society today, it is very common and essential to school children in educational centers from an early age, due to the dogma that is so rooted and culturally acquired through the course and experiences of several generations and the unquestionable benefits that contribute to the students’ physical, emotional, social and intellectual development. In this way, the educational centers are set up as social scenarios or micro spaces of the contemporary societies, in which you can see reflected a small sample of the population profile, characterized by its plurality in human and/or cultural diversity.

The presence of students with disabilities in educational centers poses a model of inclusive education, which requires to run a series of adaptations in the educational system. Often, the educational centers and the teaching staff have limited knowledge about the needs of the students with ASD, by which impacts negatively on their development and learning. It is common that the members of the educational community do not know exactly what does ASD mean or, in some cases, they extrapolate the experiences and knowledge they have acquired with another child with ASD to the multiplicity of cases, which produces an undue generalization that causes that there is no personalized intervention for each child with ASD, and this has a negative impact on their learning and development, since it is not responding to the needs required by each student.

The ASD, according to the diagnostic criteria of the DSM-V (2013), is characterized by persistent deficits in social communication and social interaction, taking from the period of early development restricted and repetitive patterns of behavior, activities, and interests, causing certain alterations clinically significant at the social and occupational level, or in other important areas of functioning.

Several epidemiological studies have shown that the ASD is becoming increasingly prevalent in our society, achieving a prevalence, at present, of a case of autism out of every 150 minors, may even be higher due to the changes in the diagnostic criteria, which are now less restrictive because they are seen within a spectrum. Autism Society of America (2011) estimates that nearly 1,500,000 people in the United States suffer from autism. If we extrapolate this figure to Spain, since there is no official statistics of the affected Spanish population, it would be a population of more than 250,000 with ASD. According to the Ministry of Equality and Social Policies of the Junta of Andalusia through the Second Plan of Action for Childhood and Adolescence of Andalusia (2016) in the Autonomous Community of Andalusia, where the province of Jaén, among others, in the year 2014 were attended in the early care services to a 3.3% of the total number of children under 6 years old living in Andalusia, of which the 75.4% of these children were diagnosed with some type of developmental disorder, being the ASD the third most frequent disorder, representing a 7.3% of the diagnosed children.

In order to respond adequately to the diversity of the student body that has any educational center and to ensure that all students reach the maximum personal, intellectual, social and emotional development, the Spanish Educational System is regulated through the LOMCE (2013), which envisages in its equity principle that should guarantee equal opportunities for the full development of the personality through education; educational inclusion, equality of rights and opportunities; that help to overcome any discrimination; and the universal accessibility to education, serving as the compensating element of personal, cultural, economic and social inequalities, with special attention to those that derive from any type of disability.

The effectiveness of this equity principle takes place through a variety of measures that place particular emphasis on attention to students with specific educational support; among which there are the students with special educational needs (SEN), which have high intellectual capacities, the pupils with late integration in the Spanish educational system and those who have specific learning difficulties.

Students with SEN refer to those children who require, in a period of their schooling or along their entire education, certain specific educational supports and services arising from their disability or severe behavioral disorders. The education of the students is governed by the principles of normalization and inclusion, ensuring non-discrimination and equality in the access to and permanence in the educational system. It is the responsibility of the Educational Administrations of each Autonomous Community to promote the enrollment at all the mandatory educational stages.

In short, the current Spanish Educational System in the field of attention to students with disabilities is characterized by following a model of integration based on responding to the special educational needs. Casanova (2011) affirms that there is a lack of inclusive education model, despite the fact that there is an international, national and regional normative sufficiently viable to establish an inclusive education model, in practice it has not yet been systematized its real implementation on the part of the competent administrations. This is also evidenced by the diagnosis on the extent and quality of the inclusion in the Spanish educational system, developed by Save the Children (2012), in which it is showed that there is still a long way to achieve the effectiveness of inclusive education. Among the main weaknesses of the educational centers for students with disabilities, there are the different educational modalities that are offered, which may be a segregation of students with disabilities in classrooms or special education centers.

This article will try to analyze how the Spanish Educational System has influenced to students with disabilities, in particular emphasizing the attention given to the students with ASD. The parents of students with ASD will let us know how the educational centers act in order to respond to the needs generated in the educational centers. This has led to contrast the reality experienced by the families of children with ASD in the education field with the regulatory framework of education and academic planning and especially with that legislation that refers to the diversity of students, in terms of schooling, enrollment, procedure and criteria for admission to public, private and/or concerted educational centers, in order to be able to follow the teachings of preschool, elementary school, high school and/or special education. In addition, it has been checked that it complies with all the documentation on the instructions of the administrations that make reference to the management of the educational attention to students with SEN: Health care professionals, equipment of educational guidance, expert opinions, educational psychology, educational modalities of schooling, ratio of students-class, etc.

In this way, the results of the research reflect a sample of the educational situation of students with ASD in the province of Jaén, having analyzed the social and educational care they receive from institutions with regard to the needs of the students with ASD, the response and the model of integration of the educational system, the accessibility that promote the educational centers, as well as the methodologies and tools used to promote social inclusion of students with ASD.

The present study has used a qualitative methodology based on the realization of a case study in which it has been used as a research method the technique of in-depth research of interviews.

The case study is a very practical and specific method to analyze situations, events or problems that arise in the people’s everyday life. On this occasion, the research has focused on studying the vulnerabilities and situations that students with ASD experience during their educational stage. This methodology is ideal because as Yin (1994) says, the case study is an empirical research that examines a contemporary phenomenon within its real-life context, especially when the boundaries between the phenomenon and its context are not clearly evident. In addition, the case study is considered a research tool, for a process, systematic and deep research of a particular case. Merriam (1988) defines it as particularistic, descriptive, heuristic and inductive, so it is very useful to study practical problems or specific situations. Its particularist character is reflected by focusing on the study of a specific situation, event or phenomenon.

According to Stake (1994), there are three types of case studies: the intrinsic, the instrumental and the collective one. The collective case study, defined as one that is used when the interest is focused on the research of a phenomenon, population or general condition. In this case, for this research, a study was carried out in collective case studies, since the purpose was to analyze several cases of population together and not to focus only on a specific case. The analysis of the experiences and life stories of various subjects of families with children with ASD brought a wider perspective of the reality of the phenomenon, but it was always assumed that it was not a collective, but an intensive study of several cases of children with ASD who probably had common characteristics, and who shared similar experiences of life, as they coincide in the same space-time and socio-cultural context.

In the same way, it can be said that the selected method fits under the name of Multiple Case Study because several unique cases are used at the same time in order to study the reality that is to be explored, described, explained, evaluated or modified (Rodriguez et al., 1996). Yin (1994) defines the multiple case study as the one where multiple cases are used at once in order to study and describe a reality. This method is more justified, since the evidences presented through a multiple case design are more convincing and it is more robust (Yin, 1994) by the fact that the results obtained are repeated and similar.

Furthermore, in this research, to substantiate the case study methodology was used the in-depth interview tool as a method for obtaining and collecting the information and evidence, since by means of this type of interview participants were able to freely express and relate their experiences and life histories on the subject under analysis.

The in-depth interview is basically, as Taylor and Bogdan (1987) say, as the recurring face-to-face meetings between the researcher and the informants, encounters directed toward understanding the perspectives or situations, such as they express in their own words. In any case, this tool, as Patton (1990) points out, enables to know the perspective and frame of reference from which people organize their environment and orient their behavior according to certain social and cultural patterns.

As explained by Alonso (1998), social science give a complementary character to the open interview, given that it enables an approach to the social, impossible to do it in other ways, since this oral source enables to listen and gather testimonies, from the living and natural voice, directly from the protagonists and social actors. The in-depth interviews have an open character, i.e. They contain a series of open questions to which the respondent can answer with more flexibility. They usually address one or two topics in greater depth and the rest of the questions arise spontaneously as a result of the answers that the interviewer is getting from the interviewee, with the sole purpose of further deepening into some fact or issue relevant to the events experienced by the interviewed person and that is interesting and enriching to collect for the investigation. Also, one of the functions of the open nature is to allow the interviewer to broadcast or reformulate questions in order to clarify the details of a reported fact or to expand and lead to other issues.

In this research, the tool of in-depth interviews were applied to the family members of children with ASD, which mainly were the fathers or mothers of children with ASD. The heterogeneity of the families and their profiles, as well as the various events that every one of them has experienced in their context, has led to the implementation of the tool has a flexible approach and, as the case may be, consider to contemplate a mixed interview model. So, by analyzing the in-depth interview, it was also considered to use the semi-structured interview, which is the one that provides that the questions are previously defined under an interview script that enables that the sequence and formulation can be altered depending on the interviewed person and the reported speech.

In the final analysis, the implementation of the technical interview was based on creating issues in relation to the subject matter of approach: the situations of vulnerability of students with ASD in the socio-educational field. From this general theme, it was designed an interview script that gathered all the possible variants and edges of the phenomenon to delve into the life history of the interviewed families in order to reflect, represent and establish an approach to the existing reality in the province of Jaen.

In this way, with the implementation of the in-depth interviews that were applied to each of the participants, authentic biographical interviews were achieved, as each family interviewed told the life history of the child with ASD and of the family unit. Pujadas (1992) defines life history as an autobiographical story, obtained by the researcher through successive interviews where the aim is to show the subjective testimony of a person, in which they are gathered both the events and the assessments that this person makes about his/her own existence. In short, with these stories that were obtained from in-depth and autobiographical interviews, it was raised to establish a discourse was generated from the collective of families with children with ASD enrolled in educational centers.

Finally, with the aim to synthesize the large volume and so important information that was obtained as a result of the implementation of the in-depth interviews was raised to establish a method that consistently recorded the answers of the interviewed fathers and mothers of children with ASD. Therefore, it was considered to use any encoding technique and/or categorization of the information in order to cover all the edges of the phenomenon and reflect these situations, which have been experienced by the students with ASD, exhaustively and reducing the cases under certain circumstances.

The synthesis of the information was taken into account from the beginning and it was considered necessary to establish a procedure. As Rodriguez et al. say (1996), in order to address the treatment of the information researchers have a first type of tasks which consists in the reduction of the data, i.e., on the simplification, the summary and in the selection of the information to make it feasible and manageable. Not only the information must be treated after having used the research techniques and when the information has been entered, but also it must precede other previous tasks, as it could be the design of the interview or the formulation of questions, since as Miles and Huberman (1994) think, an early data reduction can occur when the data collection is focused and defined, constituent aspects of a form of pre-analysis implying to rule out certain variables and relationships and caring for others.

In the research, it was decided to use the technique of categorization by the realization of a schema of categories that enabled to summarize and translate the results obtained after the completion of the in-depth interviews. It basically consisted in the creation of a system of categories and subcategories in which the information already coded was included and reflected.

The construction of the category system has been defined as open, since, as suggested by several authors, it is that model in which the schema of categories is built as a result of the information obtained at the end of the interviews. That is to say, the categories do not exist at the beginning of the research, but after the implementation of the research techniques they are introduced gradually and are built from the results that are obtained and based on the similarities in the answers. As data are collected and recorded, matches can be observed and they are sorted and grouped under one common denominator. Also, the general categories and the specific subcategories emerge, they will shape the final scheme of categories. In this study, the schema of categories has continued the following format to contemplate the different sections or categories that organize and highlight the most relevant information obtained in the interviews: Conceptual Family, Conceptual Core, Category, Definition and Description (Examples of summarized citations).

It was considered that the method that gave the ability to analyze and reflect the results obtained in the in-depth interviews was the system of categories, since it provides the ability to highlight and organize the most important and common aspects of the investigated reality. With this data source it was generated such knowledge of the reality, which provided the opportunity to review and discuss results, contrasting them with the theory collected in the first phase of the documentary analysis.

Sample

The fieldwork of this research has been mainly based on the production of primary data, from the use of the technique of semi-structured in-depth interview, which is aimed at family members of students with ASD enrolled in educational centers.

The sample of participants of this research has been established by means of intentional sampling. It is a procedure that enables to select the typical cases of the population by limiting the sample to these ones, and it is used in situations where the population is very variable and, consequently, the sample is very small.

Considering that this is a Multiple Case Study, it was essential to take into account that the selection of the study cases must be carried out on the basis of the potential information that the rarity, importance or disclosure of each particular case can contribute to the study in its entirety (Rodriguez et al., 1996). In response to the selection of each case, consideration can also be given to the variety of selecting among the whole range of possibilities in which the phenomenon is manifested, in such a way that it is possible to achieve some recurrent results, whether they are similar results, which would refer to what Yin (1994) calls as literal replication, or they are opposite results due to predictable reasons, what would be a theoretical replication.

For the selection of the sample, the ASD associations of the province of Jaén were contacted, which provided information on the profile of their members. With the idea of making a multiple case study and in order to reflect the life history of the children with ASD from the beginning of their birth, it was deemed relevant to contemplate the speech of the main witnesses of the social situations of this group, that is to say, the families of these children, mainly their mothers and fathers.

We chose 40 of the most significant cases, but finally they were 30 fathers and mothers who were interested in the study and who pledged to participate in the research, in particular, they were 19 mothers and 11 fathers. Within the sample of the selected subjects, there was great variability of profiles of families in regard to their origin and social environment, their socio-economic and cultural development and the access to expertise and resources of the family unit.

The participants, therefore, have been mothers and/or fathers of children with ASD enrolled in educational centers. They were between five and seventeen years old, being 93.3% boys and the rest girls, something common, since the ASD is more common in males than in females.

The diversity and heterogeneity of the selected cases has enriched the research, since each interview provided a different nuance of reality and, at the same time, as a whole, it could be appreciated that families have shared common aspects which confirm the vulnerability of children with ASD in the educational centers.

Once applied the methodology and used the techniques and selected tools, there was a high density of results that were recorded in such a way that facilitated the understanding, analysis and discussion of the results. On this occasion, as a method for recording the results of the case study, it was decided to use the technique of schema of categories, which has allowed to classify the main findings obtained in the in-depth interviews with the relatives of children with ASD.

In Table 1, below, it can be displayed a summary of the main thematic axes and conceptual nuclei of the categories that have been generated after the analysis of the speeches of the subjects involved in the research.

Table 1

Results of the In-depth Interviews: The attention of the Educational Centers for students with ASD

Note: Source own

This is followed by a brief analysis of the most significant results, which have been complemented with the textual and empirical evidence found in the in-depth interviews applied to the family members of children with ASD.

The element of accessibility in all its aspects has been considered as the transverse axis to ensure a greater degree of inclusion of students with ASD in the educational centers. From the beginning, in which it starts the process of schooling, families of these children found some difficulties in the enrollment. The Educational Guidance Teams are those professionals who are responsible for assessing and establishing an opinion with a schooling proposal for each child with a disability wishing to enroll. In theory, the family must participate in the schooling process, as well as in the decision of the type and mode of educational center in which their children will be educated, however, in practice, the interviewed families exposed that usually this is not real, since their participation is limited to confirm whether they agree or disagree with the proposed schooling.

The family members expressed the degree of participation they had in the schooling process of their children, which is very limited:

“They don't ask you the schooling mode you want for your child, they propose you where he/she needs to go and, finally, your child goes there because they convinced you that it is the best option”. (Interview num. 1)

Often this decision is not the most ideal, as it is influenced by the existing lack of educational resources, so to some extent, the family must give in and accept the recommended proposal:

“… We were invited to change of center, especially due to the lack of resources, lack of instructors, etc. It is assumed that we have the right to choose the education of our children and, well, that is violated.”.(Interview num. 22)

With respect to the intervention carried out by the teachers, families feel that there is a great lack of staff and that they are characterized by the lack of training and motivation of learning about the needs of children with ASD:

“Teachers have little training and, also, some of them little motivation. For example, we were at a meeting where the counselor was told to hang pictures and pictograms in the classroom, in the center, in the bathrooms... However, the year is almost finished and there is still none”.(Interview num. 2)

“The training of teachers is poor. There is no lack of material resources, but a lack of personal and training resources. When there are problems, they say they cannot take care of that child and they try to get him/her out of the center. If they had more staff, this would not happen. They are not trained to address various types of children”. . (Interview num. 12)

“Professionals need a better understanding of the people’s diversity. There is a clear lack of professionalism. We informed that our child had a special need, however, as our child can speak they thought nothing special was necessary, then, they made a diagnosis on their own”. (Interview num. 17)

In addition, they reason that schools are not providing the necessary extracurricular support that students with ASD require, since each family is seen in the need or obligation to seek these supports in private or concerted centers or through extracurricular school hours, since there is no specialized attention or it is insufficient in educational centers (psychology, communication and language, speech therapy, etc.).

“My son would need more hours of communication and language, since that is basically his largest deficit. In the afternoon, he attends the association, where he is given one hour of psychology, two hours of speech therapy, one hour of psychomotor skills and another one of transition into adulthood, a total of 5 hours a week”. (Interview num. 12)

In addition, it has been found through family members of children with ASD that schools do not tend to encourage the participation of theses students in the extracurricular activities or in the transverse activities that are carried out in the school to commemorate certain festivities:

“There is discrimination to access certain services of the center. My son was rejected due to his behavior, and they justified themselves by saying that there were no professionals to take care of him. For example, in the dining room there were problems because there is no dining area for children of the specific classroom”. (Interview num. 4)

“In the public center, they didn't give me the option for my child to participate in extracurricular activities, they alluded to the fact that his behavior was inadequate”. .(Interview num. 5)

Families agree that despite the interest shown by the educational centers in responding to the needs of students with ASD, they are very limited by the lack of personal and material resources:

“Some needs are covered, but others are not. I now have a discussion because my child needs speech therapy, but now this professional has to attend many more children and has neglected my son.”. (Interview num. 8)

“My son has a high level of retardation, which requires a treatment that they do not give him because it does not exist in the center. We are thinking of changing him to a special center, so that the attention would be more appropriate. Professionals in this center are not specialized”.. (Interview nº 9)

In relation to the implementation of the accessibility perspectives, the study sample finds that it is not at all consolidated and that only in some centers and by the will of certain professionals this methodology is introduced.

The educational centers tend to be aware that the students with ASD require adaptations to the physical environment, such as the structuring of spaces in the classroom, however, the structuring of the common spaces of the center are often not adapted to the needs of these students:

“…The tutor summoned all parents of children who were going to be in that classroom for a meeting and explained us all the rules they had elaborated: they indicated in which classroom our children were able to enter, where they were not able to enter, where they were going to work, etc. That was at the beginning of the year, now every time we go to tutoring, they show us the innovations that are being introduced, the work areas they have created in the classroom...”. (Entrevista num. 5)

Also, the educational centers try to adapt their environments to make them more understandable for students with ASD, through different cognitive methods. This methodology is not unified in all the educational centers, as some centers develop it and others do not introduce elements of cognitive accessibility:

“My child’s classroom is well organized, when I saw it, there were signals, pictograms and the space was distributed by work areas”. . (Interview num. 5)

"… The teacher was told to hang pictures and pictograms in the classroom, in the center, in the bathrooms... However, the year is almost finished and there is still none”. (Interview num. 2)

At the level of pedagogical accessibility, educational centers are very aware and use tools to adapt the curriculum in a personalized way to each student, introducing, if necessary, curricular adaptations or other means:

“In his classroom specific programs have been purchased to work with him, even the therapeutic pedagogy instructors had to do training courses. They also bought a computer monitor with a touchscreen”. . (Interview num. 22)

“My son has a very limited language and in his classroom he also uses the PECS system or the petition panel, since he knows how to finger or hold hands to express himself” (Interview num. 19)

With regard to the relations of the students with ASD with the rest of pupils and to the educational inclusion, family members believe that their children are well adapted to the center and that the interactions of their children with other pupils are cordial, also, they think they are usually accepted without problems, although they understand that it is not a full inclusion because there are certain limitations, even in some cases their children have suffered bullying:

“My son is partially integrated. He is not interested in playing with other children, he is only interested in soccer fields. Last year, other children wanted to interact with him. He is very loving, but I would like to know if his colleagues reject him”. . (Interview num. 8)

“Socially he is not fully integrated, but this is due to his own difficulties. Although there are also peer groups, so that they can help each other.”. (Interview num. 12)

"…I have been very concerned, I believe that his colleagues do not behave well, I don't know if they hit him, but by his gestures and what my son tries to tell me, it seems so. I asked his tutor, but she said I should not be worried about that, until one day, when she was the one who called me saying that an incident had occurred: his colleagues laid on him while playing and, as a result, now my son is wearing an arm plaster cast". (Interview num. 28)

Furthermore, they are aware that educational centers do not encourage the inclusive education, since there are certain aspects in which students with disabilities are segregated or isolated. For example, in the different schedules set for the exits to recess, where the students of the ordinary classroom do not share the same space-time with the students of the special or specific classrooms:

“There are aspects in which they tore them away from the other children, since they go to recess before. The specific classroom of ASD goes separately…”.. (Entrevista nº 5)

“In the previous course, he was left a bit isolated and spinning, they did nothing to encourage him”. . (Interview num. 29)

Similarly, the relatives claim that in order to promote a greater integration it would be necessary the professional figure of a social integrator.

“In the recesses, there is not a professional support that promotes that in those moments they can interact more with peers”. (Interview num. 26)

Finally, all families brought their point of view with regard to the main potentialities of the educational centers of the province regarding the attention of children with ASD. They mainly emphasized that these centers are well equipped in technological resources, which is really beneficial for students with ASD:

“The educational centers have many resources and technological materials, computers, electronic whiteboards, etc.”. (Interview num. 30)

In this research, it has been found that students with ASD and their families have a situation of vulnerability due to their social context. The various vulnerabilities found in this group are the result of the different social factors of similar nature that converge in the social environment of the family unit where the child with ASD lives, which are described below:

Following the approach of this research study, it has been perceived that there are obvious deficiencies and that care for children with ASD is susceptible to significant improvements, making it possible to establish, therefore, concrete conclusions with the premise of addressing a series of challenges to carry out that would improve the situation.

First of all, it can be concluded that part of the weaknesses and shortcomings of the educational system, which cause difficulties and/or problems for the inclusion of children with ASDS in the educational centers, has its basis and origin in the early detection processes that affects, in the long term, the educational intervention. Now the agencies act independently and with little coordination. It must be a real and effective interdisciplinary care in which the different care areas interact (social, health and education) and that ensures the coordination between agencies since the early care.

An early diagnosis is crucial, since having information and guidance of the services, intervention methods and resources focused on the ASD for the family with a child with ASD will impact positively on the quality of care, and will facilitate the entire process for families who are going through a confusing and disconcerted situation before the coping with a disability.

In this way, those families who already have a diagnosis before enrolling their child in the educational center have certain advantage, since they have the potential to warn of their child's disability, providing reports and diagnostics, and this enables the Administration to review the case, schedule the intervention and provide the necessary technical aid as quickly as possible. Although regardless of whether children provide their diagnosis or not, in all cases, the Educational Guidance Teams must make a psychology assessment and give an opinion of schooling. However, with the mere fact of having this diagnosis it anticipates and/or facilitates them the understanding of the child’s needs.

If, initially, children fail to provide their diagnosis because they do not have it, this implies that the professionals should be sufficiently trained to suspect and detect their possible disorders or disabilities, since it is in the institution where this children spend more time and, therefore, where they have greater contact with the professionals. As it has been verified in this study, unfortunately, the complexity of the condition and the lack of consensus on the diagnosis of ASD causes that a multitude of children suffering from ASD, for various reasons, has not been detected until they have begun the educational stage.

Moreover, with regard to educational intervention, it is clear that the existing legislation is not the most suitable for the care of the students with ASD, since its main deficiency are its educational modes, as they may be segregational for not promoting inclusion in natural environments of coexistence with diversity. The lack of resources is latent, since the whole sample of students should complement, on their own and external to the center where they are schooled, the education that they receive in the educational centers with extracurricular therapies in the afternoon. It has been observed, as a common denominator, in relation to the care received by students with ASD, on the part of the institutional environment, that the care is influenced by a certain circumstantial determinism, that does not depend on the own child, but on the fate or chance that families, in which the relationship with the environment matches the personal and material resources that children with ASD require. It is evident the importance of the figure of the teaching staff as the key agent in the learning process, so they must be motivated and try to promote the child’s success. Having professionals who are specialized and motivated in the ASD, who know how to provide the most suitable intervention in each case, is the guarantee of a good development and well-being in children with ASD.

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