Importance of Working together with families of Autistic Individuals in Health Care Services

 

                Introduction

Autism is a severely incapacitating growth disorder described by discrepancies in social interaction and communication, repetitive and restrictive behaviors, and other indications that can damage their day to day functioning. According to recently published reports, autism is rapidly increasing and affecting one in every eighty eight children, with around 78% increase from only a few years back (Baio 2015).  

Due to its severe social impact autism has become garnered worldwide focus .For the purpose of bringing an increasing awareness of autism, the Autism Society (2014) has officially declared the month of April for National Autism Awareness along with having an aim of encouraging continuous support, resiliency and knowledge in families with autism. The role of social care is very much important in disseminating the awareness regarding autism. Because of the severe implications of the disorder, many families have realized that having a autistic child can be challenging to recognize the need of diagnosis and to learn the ways of managing with the required changes in the home setting.  Therefore, acknowledging factors of resilience in families with autism, recognizing the ways of building stronger family outcomes, and delivering resources are essential in the social care to make families adaptable successfully.  While considering the significance of the issue and the implications associated with the autism, the objective of the research is to explore the importance of working together with families of autistic individuals in health care services. 

 

                                                               Methodology Research Method 

Qualitative research opens a space in the analysis of health problems from a social and cultural perspective, adopting various procedures, such as content analysis or discourse analysis, that allow an approach to the forms of communication and searches in The ideology hidden behind language. The sociological and anthropological tradition thus provide unique methodologies that allow us to know the context where the phenomena arise and to elaborate theoretical proposals to explain them, as is the case of ethnomethodology, analytic induction or grounded theory.

Data Analysis Method

Qualitative analysis is a dynamic and creative process that feeds, essentially, the direct experience of the researchers in the studied scenarios, reason why this stage cannot be delegated. The data are often very heterogeneous and come from interviews (individual and group), direct observations, public or private documents, methodological notes, etc., whose consistency in integration is indispensable to recompose an overview. Although all the data are important, a certain critical look is needed to distinguish those that will constitute the main source of theorization of those that only provide complementary information or illustrate the former. 

Some authors attach to theoretical criticism a practical proposal for the analysis of qualitative material, which in the end is almost the only one that is taken into account, among other things being compatible with computer programs, whose use is becoming increasingly indispensable. Nor is there much agreement among methodologists here, so the diversity of proposed schemes also forces consensus to be sought. Huberman and Miles propose three interrelated threads to perform the analysis. 

(A) The reduction of data , aimed at its selection and condensation, is carried out well in advance (in developing the conceptual framework, defining the questions, selecting the participants and the instruments of data collection), or once collected by means of abstracts , Encodings, list of topics, classifications, etc. 

B) The presentation of data , oriented to facilitate the reflective look of the researcher through concentrated presentations, such as structured summaries, synopses, sketches, diagrams, etc. 

C) The elaboration and verification of conclusions , in which a series of tactics are used to extract meanings from the data, such as comparison / contrast, pattern and subject signaling, triangulation, negative case finding, etc.  

Taylor-Bogdan proposes an approach based on three moments containing up to about twenty actions that seek "the development of an in-depth understanding of the scenarios or people being studied. Its clarity in the exposition and detailed description of each operation is especially useful to begin in the modes of qualitative analysis, although its apparent sequentially does not have to lose the perspective of the circular movement that characterizes this type of analysis.

 

                                                                                      Results

An important factor that makes it difficult to treat autistic patients and that influences the family crisis is the lack of a specialized center, and of adequately trained professionals, because although the majority of those who treat autistics in our study have been Once in contact with autistic patients either in our country or abroad and know something of their treatment, they are not experts. Therefore what is done is done and not what is owed, restricting both the affected person and his family, the possibility of having a good quality of life.

There is a deterioration in the relationship with the family of origin and there are many changes of behavior in the siblings, with problems in the self-esteem, ambivalent feelings towards the autistic brother and towards the parents, with stages that will never live since they must grow and self-care Practically alone, they face very great responsibilities for their age and with the inheritance that they will not be able to reject that is the care of the autistic when their parents die (Baird et al. 2006). 

All these problems are more marked in our environment by the lack of information and even by not knowing what to do with the autistic and with his family; This has forced parents and siblings to live ignored by society, hiding their need to ask for help in the depths of their being, resigned to their fate, not fighting for the rights of the autistic and of them, since in the Have tried many stumbles and difficulties. In Bolivia, there is no special center for autistics, nor an association of parents, since it is not a pathology studied, nor does it know its incidence or prevalence, is not taken into account or seen as an urgent necessity on which to take preventive, Detection and rehabilitation by the health authorities or governmental authorities; Even less a plan to be able to integrate the society to this human being with a pathology so invalidating. The majority of the cases studied are in school age and adolescence. Their attempt to integrate into the social environment, 100% is perceived to be unsuccessful, these children being accepted only in centers for the disabled. Only one girl has been able to enter a school of "normal" children to work especially her social integration, this being a difficult fact and a tremendous struggle for the parents and children of the course to accept (Aveyard 2014). 

It is not interesting the family structure that these families have since the support they have of their relatives of origin is scarce or almost null because of the ignorance of the problem. The only family with nuclear family structure without apparent dysfunction, has achieved its homeostasis thanks to the great support network they have of their friends rather than their relatives of origin; But the autistic one that they have is severe and with marked setbacks in their treatment by the null support that they receive from the specialists (Thomas et al. 2007). 

Most of these families have family dysfunction in their different degrees, where our hypothesis is confirmed, and also their marginalization in their social environment is also marked by the destructive behavior of the autistic and the rejection of society. In addition, they have an insufficient social support network. They are maintained thanks to the great affective support that the different members of the family have between them; despite having its dysfunction, the autistic one unites them in a special way, which is the love that they have each other. There is no support in the work environment in the sense of giving frequent rests to these parents by the physical and psychological wear that they have, that leads them to a greater stress than they have; Many mothers have abandoned their profession or work to take care of the autistic. But the neglect of other children without any pathology is serious, since the autistic has the characteristic of being very absorbent and more so if it is very dependent or has auto behaviors the physical and psychic exhaustion they have. For all this, they need the support of a multidisciplinary team (Cohen and Volkmar 1997). The most affected members of the family are: the mother, because she recharges the greater responsibility, and her level of stress and emotional balance is more labile if she does not have the support of the father, as is the case of the 2 mothers of our study that were abandoned by their partner; Their difficulties are much greater than those of families who have a being that is also fundamental in the family: the father (Aylott 2010).

The other members who are still much more affected are the autistic siblings. Even more so if they are younger siblings, with ambivalent feelings towards the autistic that they find very strange and unable to understand, as well as their parents for the over protection they have towards their brother and the marked abandonment they have towards them, leaving these Solve their problems alone, if they do not they are severely reprimanded, they are not forgiven mistakes; Their responsibilities and the hope that parents have toward them is exaggerated for what they can really achieve (Aylott 2010). Their self-esteem is very low, their independence is early, their degree of maturation is greater than that of children their age, suffer marginality in their home and in their social environment, i.e. in the school, neighborhood, etc. .; Some feel ashamed of their brother and prefer also to restrict their friendships and social environment, to avoid criticism or ridicule. On the other hand, the aggressive and destructive attitudes of his autistic brother, make his relationship with this is very superficial, this is also encouraged by parents, so their relationship is distant. They also need a lot of support and guidance from a trained staff (Ghaziuddin et al. 2002). The stressful events of these families have led the majority to a severe crisis, especially in times of transition in the family life cycle; this is much greater if the autistic has not been accepted as it is (Tuchman 2013). 

Thus, it can be safely concluded that the role of social care and intervention play an important role for families managing children with autism. Autism in the whole world is a mystery, even with the technology achieved; this mystery is greater in our environment. We cannot say that autism is a rare disease in our country because it has never been investigated. Many people have been diagnosed autistic without being and many people diagnosed with other pathologies, are autistic; and another, whose diagnosis is in doubt or not suspected. Unfortunately this is ignored and ignorance has already affected many families and even destroyed them, moreover, condemns a defenseless human being who asks for help shouting to be accepted as it is in a medium that only offers aggression. 

 

References

 

Baio, J. 2015.  Autism and Developmental Disabilities Monitoring Network. Centers for Disease Control and Prevention (US), & National Center on Birth Defects.           

Preece, D. and Jordan, R., 2010. Obtaining the views of children and young people with autism spectrum disorders about their experience of daily life and social care support. British Journal of Learning Disabilities, 38(1), pp.10-20.

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D. and Charman, T., 2006. Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). The lancet, 368(9531), pp.210-215.

Aveyard, H., 2014. Doing a literature review in health and social care: A practical guide. McGraw-Hill Education (UK).

Thomas, K.C., Ellis, A.R., McLaurin, C., Daniels, J. and Morrissey, J.P., 2007. Access to care for autism-related services. Journal of autism and developmental disorders, 37(10), pp.1902-1912.

Cohen, D.J. and Volkmar, F.R., 1997. Handbook of autism and pervasive developmental disorders. John Wiley & Sons Inc.

Ghaziuddin, M., Ghaziuddin, N. and Greden, J., 2002. Depression in persons with autism: Implications for research and clinical care. Journal of autism and developmental disorders, 32(4), pp.299-306.

Tuchman, R., 2013. Autism and social cognition in epilepsy: implications for comprehensive epilepsy care. Current opinion in neurology, 26(2), pp.214-218.

Aylott, J., 2010. Improving access to health and social care for people with autism. Nursing Standard, 24(27), pp.47-56.

                                                                                                                                                 21^st October 2020