A family with a child affected by autism

Family with a child with autism Prof. Rudolf Jedlička says: "It is not difficult to love a healthy and beautiful child, but only great love can stoop to a disabled child."

When a child with a disability is born, the family finds itself in a situation that it did not expect, that it does not know, that it did not cause. It really depends on how the family and its surroundings cope with the given situation. For a disabled child, for his further development, the reaction and approach of the family and the immediate surroundings is very important. Autism is a pervasive developmental disorder with multifactorial causes. It interferes with the overall development of the child and affects the possibilities of his upbringing, education and socialization. Despite the common characteristic features, the spectrum of autistic disorder is very heterogeneous, and therefore the needs of families with this disability are also very variable. All families in which a disabled child is born have a need for the positive development of their child, a need for help in coping with stress, a need for social support and a need for an ethical approach from doctors, experts and the entire social environment.

Many years have passed since autism was first described. Many educational and therapeutic procedures have been proposed and tested. Despite the efforts of individual experts, the idea of a unified strategy for children with autism center disorder (hereinafter ASD) or other pervasive developmental disorders could not be found. Professional studies have repeatedly confirmed that the best results for children with autism have structured special programs and methods. These specific methods, forms and procedures are the only ones that ensure the necessary amount of information and clarity, which is very important for a successful educational process as well as the overall development of a child with autism.

A determining element in the education of children with autism is the fact that it is a population with a specific disability. The main symptoms are a disorder of psychological development, characterized mainly by the so-called disability triad. These are:

• qualitative disruption of social interactions,
• qualitative disruption of communication,
• very limited range of imagination, interests and activities.

Basic manifestations of autism

Children with autism are resistant to any change, the quality of communication is impaired, some do not develop speech. The basic features of this disorder include egocentrism, which is accompanied by little effort to contact peers, there are problems in understanding social relationships and situations, they cannot relate to the feelings and thoughts of other people, they are lonely in a group and their communication takes place in a special way. Characteristic manifestations include social naivety, consistent truthfulness, shocking remarks towards unknown persons. They are often physically clumsy, have impaired gross motor skills. Even if children with Asperger's syndrome or highly functional autistics are intelligent enough, in an abstract sense, in a practical sense as stated by Mühlpachr (2001), they are referred to as socially handicapped and in need of social care.

We can perceive the world of an autistic child as monotonous, abandoned, empty. The child does not know, does not react, e.g. at his mother's instigation, at his name, he doesn't cuddle, he doesn't smile. He doesn't like certain sounds, he reacts to them by having screaming fits, on the contrary, he loves other sounds and they are soothing to him. Children often have a strange look, it is difficult to make eye contact, if they take notice of their surroundings, it is only with short, sideways glances. Gestures, facial expressions, facial expressions are poor. They have a lot of stereotyped movements that have no meaning. Children follow their own motives, it is difficult to lead them to learn from adults. They have excellent abilities in abstract and logical thinking, but their range of interests is isolated. Autistic extreme loneliness (not physical, but rather mental), clinging to immutability, immersion in extremely narrow areas is distinctive.

Among the significant changes in the understanding of autism is the acceptance of the fact that childhood autism is very often associated with mental and other disabilities. In general, this is a frequent combination of autism and mental retardation. Autists do not form a homogenous group and we can find here children with average to above-average intelligence (asperger's syndrome, high-functioning autistics), but also children with autism in the area of ​​moderate, severe to profound mental retardation. The manifestations of autism are different and the degree of mental disability is also different.

According to Peeters (1998), most children with autism are in the zone of moderate and severe mental retardation. 60% of children with autism have an IQ below 50, 20% of children with autism range from mild mental retardation, and 20% of children with autism have an average or above average IQ. Distinguishing between severe autism and mental retardation can be difficult because mental retardation can show symptoms reminiscent of autism. However, unlike children with autism, mentally retarded children are more sociable, they have their own imagination, they like to communicate verbally and non-verbally, with gestures and facial expressions. Sometimes early diagnosis is more difficult, especially when it comes to associated vision and hearing disorders. Delayed development is characteristic of mentally disabled children, but the development of children with autism is qualitatively different. It is characterized by an uneven development profile. Children with autism are comparable to healthy children on some developmental levels, for example in the level of motor skills, but in other areas such as communication, social relations, and imagination, they are significantly behind. Even if children with autism have some above-average skills, they cannot use them in practical life.

Determining the degree of mental retardation and the level of speech development has a very important role in terms of prognosis and the creation of individual therapy for children with autism. A more favorable development can be expected in children with an IQ higher than 50 and the appearance of verbal expressions by the age of 5. Autism research has undergone a turnaround from understanding autism as a psychosis, and the diagnosis has been classified as a developmental disorder, not a mental illness.

When influencing autistic manifestations, we often come across the term "therapy", but it is not therapy in the medical sense. Since there is still no clear cause of autism, its treatment in the sense of medical treatment is not possible. Autism is a lifelong disability, it is a permanent condition that can be significantly influenced by special methods and approaches. These are specific methods of upbringing and education referred to as educational. The earlier these methods start to be applied, the better for the child. Currently, the only effective therapy for autism is the correct special-pedagogical approach (choice of suitable forms, methods and means). The approach must be structured, with consistent visualization support, strictly individual "tailored" for each autistic child separately. Within the framework of individual educational plans (hereafter IEP), it is possible to use different methods, forms and procedures so that the child reaches the level of maximum independence, which will enable him to use all acquired knowledge, skills and habits to live the most fulfilling life possible.

In an effort to help children with autism, their parents and special educators, we conducted the first part of the research in 2008/2009 at 17 special elementary schools in the Žilina Region. The basic group consisted of 85 pupils with autism and intellectual disability. We started from the knowledge that children with autism can hardly analyze the situation, they cannot sort the necessary information, manage their activities in their free time, they only understand what they see. For them, the normal teaching process and the world around them represents a great chaos, into which order, regularity and a certain degree of predictability must be introduced. It is necessary to give them clear visual boundaries for individual activities in order to better understand the environment and the relationships around it.

Another aim of the research was to find out the level of education, overall care of a child with autism in an effort to get closer to the greatest possible independence and gradual socialization. Through research, we wanted to observe, describe, analyze and compare various factors that influence the results of the education of children with autism, a selection of the most frequently used methods and forms, with which special educators help use all the acquired knowledge, skills and habits of children with autism in order to live a life of the highest possible quality.

These facts were verified directly in the educational process at selected special elementary schools and also by the questionnaire method and the interview method, which were addressed to the directors of special elementary schools and facilities and special educators who educate students with autism. Through research, we wanted to bring an insight into the individual specifics of disabilities, such as pervasive developmental diseases, and a real insight into the application of individual specific and common educational methods, forms, principles and procedures in the educational process and socialization process, as well as methodical help for parents.

The return rate of questionnaires in our research was 100%. Through research, we found out what specific procedures, programs, and methods are used by special educators in the educational process and which of the specific methods are most suitable for educating students with autism and mental disabilities. We observed and compared which of the forms of organization and management of education in special elementary schools are most suitable for pupils with autism and what special pedagogical service we can offer to the parents of these children, so that care, given the fact that autism is a pervasive developmental disorder affecting and affecting the entire life of an individual, is biodromous - lifelong.

Research Conclusions

A)

In special elementary schools, in the educational process, special pedagogues mainly use the most widespread TEACCH program, which is currently the most suitable method for educating students with autism and intellectual disabilities, because it respects the specifics of the autistic disorder and is based on the needs and abilities of the students. According to this program, 48% of students with autism progress, and 52% of TEACCH students only partially need the program. At all schools approached, special educators stated that they use the TEACCH program, that it is suitable for children and students with autism at all ages and at all levels of intelligence. Pedagogical practice has confirmed that students at a lower developmental level benefit more from structuring than children at a higher level. Pupils with autism often have impaired communication skills, so we researched the use of the method of augmentative and alternative communication (AAK). Through research, we found that this method is suitable for different groups of children and students who have communication problems. Special educators confirmed to us that they use this method in 71%, mainly when compensating for disorders in the field of expressive communication. Using this method improves the efficiency of communication and can temporarily or permanently replace speech in children with autism. This method in all cases is suitable for dealing with problem behavior, especially since this problem behavior stems from the frustration that can be caused by the inability to communicate. We note that non-verbal communication also helps students with autism to better adapt socially in school and extracurricular environments.

Another method we checked is applied behavioral analysis (ABA), which is used by 20% of special educators in the educational process. This method is mainly used for those students with autism, where it is necessary to eliminate unwanted behavior. Our practice has confirmed that the ABA method is also used as a technique for learning new skills.

The PECS method - a pictorial communication system, which is used to eliminate and prevent problematic behavior from insufficient communication, is used by only 18% of special educators and is still not widely used in special elementary schools.

B)

In special elementary schools for students with mental disabilities, 40% of students with autism are educated in separate classes, where special teachers use structured teaching with an individual approach to each student according to his needs. Teaching is divided into shorter periods of time, it is mainly block teaching. Through research, we also monitored the material and technical equipment of individual special elementary schools. The diagnosis of autism brings with it certain specifics in the readiness of the school itself and especially the classes in which students with autism are educated (structured environment), and thus higher financial demands for the school in terms of material, technical and personnel.

28% of pupils who are educated in special primary schools are included in individual years of variant A, variant B and variant C with developed IEP. We have to state that this form of education is not satisfactory for pupils with autism, because special educators cannot provide an individual approach to the extent that the diagnosis of autism requires, as other pupils with mental and multiple disabilities are present in the educational process. This fact is most common in schools where there are smaller numbers of students with autism and, according to the current legislation, it is not possible to set up a separate class for these students.

The best form of implementation of the upbringing and education of pupils with autism is the establishment of a separate elementary school for pupils with autism, both in terms of material and technology, as well as personnel. This type of school can provide a comprehensive special pedagogical service and suitable educational conditions for students with autism. A school can be established with the number of ten pupils in accordance with the applicable legislation. There is currently one private primary school for pupils with autism in the Žilina region, and all the contacted parents and teaching staff, who originally attended a special primary school and the children were educated together with pupils with other disabilities, unequivocally confirmed to us the benefits of establishing this type of school for pupils with autism. Positive changes are mainly in the elimination of problematic behavior, and this is related to progress in the acquisition of academic and socialization skills of these children.

C)

All examined pupils had an individual educational program developed, which individually took into account the uneven developmental profile and developed the areas that are most defective in pupils with autism (communication, social behavior and imagination). As part of the IEP at all levels, special teachers had transformed the content of the curriculum into worksheets, created special didactic aids, which together with an individual approach, the selection of suitable methods and a way to respond flexibly to the needs of the pupil, enabled the education of pupils with autism. Class teachers confirmed that it is good for parents to participate in the creation of the IEP, because the parent knows their child best and mutual cooperation, daily contact between the teacher and the parent is very important in the educational process for students with autism.

D)

A structured classroom environment is of great importance for students with autism from several aspects. It helps them with better concentration and attention, improves efficiency when working independently, eliminates behavioral problems, which improves the student's academic and socialization skills. The importance and justification of a structured environment was confirmed by 36% of special educators in our research. 60% of special educators stated that a structured environment has an impact on the educational process, but not for all students, and 4% of special educators confirmed that a structured environment eliminates the behavior of students with autism only occasionally. School practice has clearly confirmed that students with autism are very successful in such an environment. A structured environment is of great importance for children not only at school, but also at home.

E)

In this context, it is necessary to mention that five of the seventeen special primary schools in the Žilina region have a center for special pedagogical counseling as organizational units, where special teachers who focus on different types of disabilities work. Each center has a psychologist, rehabilitation worker, therapeutic pedagogue, and social worker who provide professional special-pedagogical diagnostics and related complex services for children with autism and their parents.

Centers for special educational counseling are able to determine the diagnosis of autism at an early age and at the same time offer a suitable educational program for children with autism in special kindergartens and other schools and facilities. Through research, we monitored whether children with autism or other pervasive developmental disorder are included in pre-primary education, or preparatory year. We know from the interview of the parents that either they do not want to send their children to these facilities at an early age, or they do not have such facilities in their region, and ordinary kindergartens are not ready for the integration of children with autism.

Recommendations for practice:

• We recommend paying more attention to pre-primary education and the subsequent inclusion of children with autism in the preparatory year. Try to train children with autism already in the preparatory years so that they can socialize, acquire the necessary habits, and get used to the work system. To explain to parents through special educational education that with this diagnosis it is not appropriate to postpone compulsory schooling, because only timely intervention, the correct use of specific methods and procedures has a favorable and positive effect on the further development and readiness of a child with pervasive developmental disorders for the next educational process.
• From the above, there is a real need for more primary schools for pupils with autism in the Žilina region, which would have regional coverage. There is a need for the availability of an educational process that would be focused on the diagnosis of pervasive developmental disorders and overall diagnostic and rehabilitation services through centers of special pedagogical counseling for families, children, and pedagogical staff. This network of schools and facilities would also solve the problem of what to do with students with autism who do not have mental disabilities, or students with autism who are borderline mentally retarded and cannot be admitted to a special elementary school.
• It is important that principals of special primary schools, primary schools and special pedagogical counseling centers know how to guide parents of children with autism. To explain to them the possibilities of education, the creation of a truly individual educational process, as far as the conditions of a special elementary school allow.
• It is necessary to solve the problem of what will happen to pupils with autism and intellectual disabilities after the end of compulsory schooling (the department of the Ministry of Labour, Social Affairs and Family should step in and help with its legislation, as well as the self-governing region, municipalities, SPOSA and other non-profit organizations). Build sheltered workshops, sheltered housing, expand the network of regional centers for autists.
• In the network of schools and school facilities, include a practical school for pupils with autism with mental disabilities, where the pupils would continue to strengthen their knowledge and skills with the help of already acquired methods.
• Consistently observe the ratio of one special pedagogue = one severely mentally disabled student with autism. The presence of a teacher's assistant is required in every class where there are more than two students with autism.
• It is important that special pedagogues, teacher assistants, who participate in the educational process of pupils with autism, participate in the further education of pedagogical staff with a focus on autism and study relevant professional literature. To supplement additional knowledge through education organized either by the state pedagogical institute, the pedagogical faculty or the methodical-pedagogical center. Constantly learn new methods and approaches and apply them according to the individual needs of the pupils entrusted to him.
• It is necessary to organize working, methodical meetings, seminars at the level of the founder, school directors and teaching staff who are involved in the educational process of pupils with autism and intellectual disabilities. Exchange of experience not only between schools in the Žilina region, but also within Slovakia, possibly foreign stays and internships.
• In addition to the TEACCH program, using various other methods, combining them, teachers should be more flexible and imaginative so that students with autism can socialize as much as possible.
• The school principal or special educator should communicate and cooperate with parents so that the educational process continues naturally from the school environment to the home environment. It is necessary to cooperate with parents on the development of the IEP.

A parent needs information from a specialist who has the opportunity to follow more disability cases in his practice, has access to the latest information on the development of techniques, methods and new procedures. Through them, the parent understands his child better and helps him support the child's development. Support is especially necessary in the event that, in addition to normal life situations, the parent experiences anxiety from having a disabled child. It is necessary to support parents, remove disappointment and frustration and motivate them to cooperate.

Conclusion

Autism is a very severe disability, which entails an individual, constantly modified approach to each child according to their individual needs, mental level, behavior and especially health status. It is possible to influence him very significantly mainly with special procedures, methods and approaches, which must be applied strictly individually for each child with autism. If we really want to help children and parents, we must provide them with a specific educational environment, teach them to minimize disturbing influences, look for a suitable communication channel and open the way to gradual socialization.

The common denominator in special pedagogy and social work in the context of caring for children diagnosed with autism is to use their potential, compensate for the negative consequences of their disadvantage and strive for their integration into a society that respects the rights, dignity and equal opportunities of all people. In both cases, it is a professional, specialized mainly individually oriented intervention with the aim of eliminating or mitigating the consequences of the disability, i.e. comprehensive rehabilitation of the disabled. Ultimately, the common goal of both departments is to help improve the quality of life, the social integration of such disabled children, draw the public's attention to their problems and try to find appropriate solutions to these problems.

Author: PhDr. Janka Marková List of bibliographic references

[1] MARKOVÁ, J. 2009. Methods and forms of work in the educational process for pupils with autism. Rigorous work. Bratislava : VŠZaSP St. Elizabeth, 2009. ISBN 978-80-970501-3-9. [2] MÜHLPACHR, P. 2001. Autism known unknown. In: Special Education, 2001, vol. 11, no. 3, p. 143-148. ISSN 1211-2720. [3] PEETERS, T. 1998. Autism - from theory to educational intervention. Prague: Scienia, 1998. 170 p. ISBN 80-7183-114-X.

The lecture was given at the international scientific conference Applied ethics in social work and other helping professions, which took place on October 20-21, 2010, in Piešťany and was published in the proceedings of this conference: MÁTEL, A. – SCHAVEL, M. – MÜHLPACHR, P. – ROMAN, T. 2010. Applied ethics in social work and other helping professions. Proceedings of the international scientific conference. Bratislava : VŠZaSP St. Elizabeth. 413 p. ISBN 978-80-89271-89-4.