Accepting Diversity Before Fighting for Inclusion: First Moments of the Family After the Disability Diagnosis

Accepting Diversity Before Fighting for Inclusion: First Moments of the Family After the Disability Diagnosis

Alexandros Argyriadis, Maria Efstratopoulou, Agathi Argyriadi
Copyright: © 2022 |Pages: 15
DOI: 10.4018/978-1-6684-4680-5.ch016
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Announcing the diagnosis of a disability constitutes a psycho-traumatic experience for parents. At the stage of diagnosis, the family experiences emotions that range from surprise and doubt to awareness of the situation. This chapter presents the case study of a family that receives the announcement of the diagnosis of their child with autism, which is automatically placed in the spectrum of diversity. At this point, it is worth noting that the social approach of disability places the individual in the context of the diversity so, adopting the above rationale, this chapter presents the diagnosis process in detail, the events as narrated by the parents but also the feelings that the parents had at that time. The results of this study demonstrated issues related to family stress levels, quality of life, the couple relationships, and a number of needs that arose.
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Family schema is a dynamic living cell. Parents as caretakers play a vital role in mentoring and guiding their children’s learning journey from early childhood into adulthood. Parental stress is an anxiety closely aligned with the significant role of being a parent. However, when it comes to parents of children with autism spectrum disorder (ASD), this role often starts as soon as their child is diagnosed (Foster et al., 2012). More specifically, parents of children with ASD very often face a plethora of difficulties regarding the educational opportunities focused on developing their skills and achieving a high quality of life (Efstratopoulou, Sofologi, Giannoglou & Bonti, 2021). In this vein, parents are faced with a range of emotional pressures as they attempt to learn about ASD and what this means for their child (Downes et al., 2021). Compared with parents of children with intellectual or other developmental disabilities, studies reveal that parents of children with ASD experience more psychological distress including depression, anxiety, and components of stress, such as decreased family cohesion and increased somatic symptomatology.

Key Terms in this Chapter

Marital Relationships: A civil union, domestic partnership, marriage, or any other similar relationship that is legally recognized in any jurisdiction.

Caregiver: Is a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury or disability. The term “family caregiver” describes individuals who care for members of their family of origin, but also refers to those who care for their family of choice. This could be members of their congregation, neighbors or close friends. Family caregivers play a significant role in health care, as they are often the main source of valuable information about the patient.

Disability: Is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.

Psychological Stress: A particular relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being.

Cultural Construction: Is the dynamic and objective way that individuals, families or/and communities shape and maintain their perception of an issue through space and time contexts. Most of the times the subject that is constructed belongs to a diverse community or situation related to racial, class, gender, disability, etc. (Argyriadis, 2022 AU54: The in-text citation "Argyriadis, 2022" is not in the reference list. Please correct the citation, add the reference to the list, or delete the citation. ).

Autism Spectrum Disorder (ASD): Is a neurodevelopmental disorder characterized difficulties in social communication, including verbal and nonverbal communication, deficits in social interactions and restricted, repetitive patterns of behavior, interests or activities and sensory problems.

Family Planning: The ability of individuals and couples to anticipate and attain their desired number of children and the spacing and timing of their births.

Diagnosis: The identification of the nature of an illness or other problem by examination of the symptoms.

Family System Theory: This Theory assumes that a family is understood best by examining the family as one whole system. This one system is a complex, deeply-connected changing collection of parts, subsystems and family members, where each member has a known purpose or function.,

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