Families of Children with Spectrum Disorder

Introduction

Autism is one of the neurodevelopmental disorders with a wide range of severity and symptoms. It is a complex disorder caused by multiple mutations of genes, epigenetic factors, and environmental conditions, such as pollution, food, and diseases (Christensen et al., 2018). Owing to multiple and interactive causes, it is difficult to single out the primary cause and treatment of autism.

The prognosis of autism shows that it manifests itself during childhood and progressively influences the development of a person through into adulthood. Since the onset of autism in childhood, parents and families have the responsibility of helping their autistic children to develop optimally and attain their developmental milestones. In their childhood, autistic children begin to exhibit challenges in communication, difficulties in social interaction, limited interest, and repetitive behaviors (Christensen et al., 2018).

Consequently, families encounter many challenges in bringing up autistic children. Therefore, the research paper defines autism, highlights parenting challenges, assesses developmental requirements, and identifies available support services for families to create a favorable environment for autistic children to grow and develop.

Autism

Autism is a composite neurodevelopmental disorder that manifests in childhood and dominates through into adulthood. The analysis of the mechanism shows that both physiological and neuropsychological dysfunctions in the brain account for the occurrence of autism (Gialloreti & Curatolo, 2018). An impairment in the physiological processes in the brain due to physical and biochemical injuries contributes to the emergence of autism. Additionally, the disturbance of neurological functions affects psychological processes and influences behaviors, resulting in the development of autism.

The interaction between the central nervous system and the gastrointestinal system through the gut-brain axis also mediates the occurrence of autism (Gialloreti & Curatolo, 2018). Hence, abnormalities in the gut-brain axis determine the nature and severity of autism. Moreover, autism occurs due to synaptic dysfunction, particularly in pathways involved in impulse transmission and cell adhesion. The assessment of agents that cause congenital disabilities points out that autism stems from a complex interaction of physiological and neuropsychological dysfunctions, which commence during conception.

The examination of the mechanism reveals the existence of different causative factors and processes of autism. A combination of genes, epigenetic actors, food, disease, and environment contribute to the occurrence of autism (Gialloreti & Curatolo, 2018). Genetic inheritance and expression contribute to the occurrence of autism among individuals. According to Gialloreti and Curatolo (2018), epigenetic control affects the expression of proteins that play a marked role in the transmission of impulses and synaptic functions. Poor diet and deficiencies of nutrients increase the risk of autism since they influence maternal health and neurodevelopment.

Diseases such as infections and autoimmune disorders damage brain structures and cause neural dysfunction, leading to the development of autism. Exposure to chemicals in the maternal and external environment augments susceptibility to autism. Gialloreti and Curatolo (2018) identify toxicants, medications, and uterine conditions as some of the environmental factors that cause autism. Overall, autism stems from a complex of factors that interact and collectively contribute to dysfunctions in the central and peripheral nervous systems.

Symptoms rather than causes or the mechanism of autism define and differentiate it from other psychological disorders. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM5), challenges in social communication, limited social interaction, and repetitive behavioral activities are three significant symptoms of autism (Gialloreti & Curatolo, 2018). The assessment of communication ability shows that over half of autistic children experience deficits in their speeches and inefficiencies in connecting with other people.

Unusual gestures, delayed onset of muttering, disordered vocal patterns, and weak responsiveness are evident in the first years, whereas in the second to third year, autistic children tend to have unsynchronized words and gestures with imperfect babbling and sounds (Chu, Normal, McConnell, Tan, & Singh, 2018).

Limited social interaction is an apparent symptom of autism in children. Deprived social development becomes apparent early in childhood. From their infancy, autistic children have limited perception of social stimuli because they rarely smile, look at individuals, and respond to their names. In exhibiting repetitive behaviors, autistic children tend to replicate gestures, systematically arrange objects, resist disturbance of patterns, and portray ritualistic activities. Reliant to the severity of the disorder, autistic children may exhibit few or many symptoms that DSM-5 can categorize into communication, social interaction, and repetitive behaviors.

Challenges of Raising an Autistic Child

Parents and families have an overwhelming responsibility of raising an autistic child because they demand lifelong services and support to enable them to perform activities of daily living effectively. An immediate challenge of raising an autistic child entails a negative impact on the lives of parents and family members. The inability to communicate with autistic children prevents parents and family members from managing typical behavioral issues (Chu et al., 2018). In essence, parents devote much of their time and attention trying to understand and manage the troubling behaviors of autistic children.

Parents, particularly mothers, forgo social activities and careers so that they can dedicate themselves to the extreme demands of autistic children. Diminished participation in social activities, community programs, and economic activities deprives parents of happiness and decreases the quality of life. Furthermore, marital problems increase as partners feel guilty of autism and quarrel over increased responsibility.

Consequently, parents and family members endure stress and anxiety associated with high medical costs, demanding lifelong care, and restricted social interactions (Chu et al., 2018). In society, parents and family members feel isolated and experience low quality of life because they spend their time and resources on the provision of specialized care to autistic children instead of participating in social activities and building communities.

In raising their autistic children, parents and family members have a challenge of understanding autism because they have limited knowledge about causes, effects, and management. Although parents could describe symptoms that their autistic children present, they do not comprehend the scope of autism. According to Chu et al. (2018), the diagnosis of autism perplexes parents and family members because they do not know how to handle and manage unique expressions and behaviors. Prior to the diagnosis of autism, parents are unable to handle their children because they exhibit strange behaviors, which require the special skills of caregivers.

Chu et al. (2018) explain that limited knowledge delays diagnosis and hinders effective management of autism. Typically, early diagnosis of autism is critical in the provision of therapy and improvement of developmental milestones in children. Upon diagnosis, healthcare providers have to educate parents about autism and management practices that they ought to apply to raise their children. Additionally, the complexity of autism requires parents to apply different management practices, which meet the varied needs of autistic children. Therefore, the existence of limited knowledge means that autistic children do not get appropriate care because parents rely entirely on medical advice, which they can only access after diagnosis.

Parents and families also encounter challenges in seeking appropriate medical services for the treatment and management of autism. Chu et al. (2018) report that late diagnosis of autism, expensive treatment, long waiting times in hospitals, and inadequate support services are challenges that hinder the accessibility of healthcare services. Owing to the inaccessibility of healthcare services, parents do not diagnose their children in time to receive pertinent therapy, which is integral in the effective management of autism.

Since parents and family members understand symptoms that autistic children present, they have to explain them to medical providers for an accurate assessment. The diagnosis of severity and spectrum of autism is dependent on the nature of symptoms presented to doctors. As autism is a lifelong disorder, parents and family have to seek healthcare services regularly, which are quite expensive in the long term. High costs of treatment and management of autism impoverish families, especially the poor ones without adequate insurance cover. Furthermore, it takes a long time for parents to access medical services owing to long queues and waiting durations in healthcare centers (Chu et al., 2018).

Support services for speech therapy are not adequate to meet the varied demands of autistic children. Hence, parents and family members have to optimize available support services by playing a substantial role in the provision of speech therapy to their autistic children.

Independence in Adulthood

Autistic children can gain independence in adulthood if they get appropriate therapy and training after early diagnosis. Given that communication skills have a central role in social interaction, improvement of expressions, the establishment of skills, and provision of tools to autistic children strengthen their independence in adulthood. The use of a visual schedule during infancy reduces repetitive behaviors exhibited by autistic individuals (Catalano, Holloway, & Mpofu, 2018).

The identification of activities of interest and the use of a visual schedule permits autistic children to improve their independence in adulthood because they graduate from one activity to another. As an autistic child grows and develops, parents have the responsibility of ensuring that they teach them about self-care skills. The introduction of self-care activities at early ages augments independence during adulthood because autistic adults would be able to perform activities of daily living, such as bathing, eating, dressing, and combing hair (Catalano et al., 2018). Teaching autistic children how to communicate with devices would allow them to express their desires, interests, and needs in adulthood, hence, becoming independent in performing various activities.

The provision of relevant training during childhood encourages autistic individuals to participate in family activities. It is possible for autistic children to gain independence in carrying out chores during their adulthood. Parents and family members ought to engage autistic children in domestic activities, such as cooking, washing, and cleaning (Catalano et al., 2018). For autistic children who cannot execute complex chores, caregivers need to divide them into doable and straightforward tasks, which are easy to emulate and handle. Moreover, autistic children can gain life skills, for example, utilization of money and safety. In the utilization of money, autistic adults can select and purchase products of interest to satisfy their immediate needs.

Autistic children also can develop and pursue their careers based on their skills, interests, and strengths. Catalano et al. (2018) assert that the role of parents and teachers is to identify skills and strengths of autistic children in the aspects of communication, self-care, and performance of activities, as well as their interests and desires. The appropriate training of autistic children would enable them to realize vocational skills.

The school curriculum provides customized vocational training to autistic children, aids them to participate in various economic activities, and consequently improves their independence in adulthood. According to Walsh, Lydon, and Healy (2014), vocational training improves the quality of life because it facilitates autistic individuals to pursue their careers and earn income. Therefore, vocational training of autistic children from the adolescent period allows them to contribute to economic activities and boosts their independence in life.

Available Services

Both families and autistic individuals require social support and resources for effective management of resources. To cope with the challenges of exhaustion, depression, misunderstanding of autism, and inaccessible healthcare services, families need guidance and support. In the United States, families receive guidance on the diagnosis and management of autism from healthcare centers under the National Institute of Mental Health (Walsh et al., 2014).

By visiting these centers, parents and caregivers acquire updated information regarding causes, occurrence, and therapies of autism. Owing to the demanding nature of raising autistic children, parents often endure exhaustion and depression. Consequently, parents and caregivers need psychotherapy services of stress management, knowledge of autism, and problem-solving skills from healthcare centers so that they can maintain their mental health (Catalano et al., 2018). Networks of social support, such as Autism Awareness Center, Autism Society of America, and Autism Friendly, are also accessible to facilitate parents to share their experiences, encourage one another in bringing up their children, and alleviate social isolation.

Autistic individuals require lifelong services from caregivers, the health care system, the education system, and the labor market because they are critical in the improvement of the quality of life. Residential care is available for autistic adults with significant disabilities who are unable to perform activities of daily living. Caregivers, mostly family members, provide essential care to autistic adults. Mental services are available in medical centers since the health care system operates elaborate programs for autistic individuals. From the education system, autistic individuals can access special education, which empowers them to gain life and vocational skills for enhanced independence and improved quality of life.

In the labor market, occupational therapy is available to improve the participation and performance of economic activities. According to Walsh et al. (2014), employment boosts cognitive functions, encourages social interaction, and augments the quality of life among autistic adults. Hence, the government provides employment opportunities and occupational therapies to autistic adults as a way of improving their welfare in society.

Conclusion

Autism is an intricate psychological disorder that stems from numerous causes affecting the central nervous system. Parents and families experience many challenges in raising autistic children because they require special services and dedicated attention, which are complicated, exhaustive, and stressful for parents to provide. Moreover, insufficient knowledge and inaccessible services are other challenges that hamper the raising of autistic children.

However, early diagnosis and provision of dedicated services empower autistic children to gain communication skills, perform activities of daily living, and boost the quality of life in their adulthood. Effective management of autism requires parents to access information, mental services, and social support, while autistic individuals need caregivers, therapy, special education, vocational training, and employment opportunities.

References

Catalano, D., Holloway, L., & Mpofu, E. (2018). Mental health interventions for parent carers of children with autistic spectrum disorder: Practice guidelines from a critical interpretive synthesis (CIS) systematic review. International Journal of Environmental Research and Public Health, 15(2), 1-23. Web.

Christensen, D. L., Braun, K., Baio, J., Bilder, D., Charles, J., Constantino, J. N., … Yeargin-Allsopp, M. (2018). Prevalence and characteristics of autism spectrum disorder among children aged 8 years: Autism and developmental disabilities monitoring network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Report: Surveillance Summaries, 65(13), 1-23. Web.

Chu, S. Y., Normal, S. N., McConnell, G. E., Tan, J. S., & Singh, S. K. (2018). Challenges faced by parents of children with autism spectrum disorder in Malaysia, Speech, Language and Hearing, 1-10. Web.

Gialloreti, L. E., & Curatolo, P. (2018). Autism spectrum disorder: Why do we know so little? Frontiers in Neurology, 9(1), 1-4. Web.

Walsh, L., Lydon, S., & Healy, O. (2014). Employment and vocational skills among individuals with autism spectrum disorder: Predictors, impact, and interventions. Review Journal of Autism and Developmental Disorders, 1(4), 266-275. Web.