Families Dealing with Children with Autism
Autism is a neurodevelopment disorder that is caused by various known and unknown biological factors that cause brain malfunction, affecting its developing ability to handle information (Brown et al., 2012). Autism is characterized by difficulties in communication, social impairment, and repetitive behaviors. ASD (Autistic Spectrum Disorders) include pervasive development disorder – not otherwise stated, autistic disorder, and Asperger`s syndrome. These are a collection of neurodevelopment disorders defined by specific symptoms such as repetitive behaviors as well as social and communication impairment (Brown et al., 2009). Canadian families face many challenges when dealing with autism in respect to the economic burden brought by the condition. This paper will analyze nursing approaches to families dealing with ASD. The paper will focus on the unmet needs of the families which have children with autism. It will also examine the shortcomings in the Canadian policy related to the service provision to autism families. The paper will provide an overview of autism in Canada, literature review, recommendations, and a conclusion.
Overview and Background
Numerous studies have highlighted the apparent unmet essential needs of families with a child suffering from autism. The parents and guardians of these children frequently report the need for awareness about the services available and education on how to deal with the child`s challenging behaviors (MacNeil, Lopes & Minnes, 2009). According to Brown et al. (2012), the need for information is the most common unmet need reported by half of the parents who had a child with autism. The parents needed information on behavioral management, the availability of services and teaching strategies. The parents also see themselves as the immediate managers of their child`s case, and they reported a laxity in service coordination and access. They highlighted specific cases like lack of specialized medical services and delay in receiving care for their children. Communication and coordination between the professionals in the service system and the families was found to be insufficient (Brown et al., 2012). More than 59% of parents of children with autism informed that the service providing organizations do not communicate with them satisfactorily. There is also a lack of support in terms of respite care and help with the family reunion. Many families with autistic children reported a need for a babysitter, a need for learning how to support each other as well as a need for help in finding relief care providers.
Most of the past researches and programs have concentrated on the requirement for very young children with autism or have covered a broad age range, overlooking the needs of families with children of school going age. Furthermore, the specific needs and challenges of adolescents with autism are much more different from those of young children with the same condition (Krahn & Fenton, 2012). By looking at the needs of children of a wide age range together, some specific needs of families with children of different age groups may not be met.
Autism is a permanent disability and it has no known cure; however, individuals with autism can learn and develop skills that raise their independence and improve their quality of life (Fletcher, Markoulakis, & Bryden, 2012). Many children with autism can sometimes undergo a significant development following early, well calculated, and individually drawn educational plans in specially modified settings. The main aim is to help the children develop functional communication. The educational methodologies must emphasize the knowledge about the specific ways that children with autism learn. During the years before school going age, behavioral analysis is the recommended method in the treatment of autism symptoms (Marshall, 2014). In Canada, the funding systems are drawn up in such a way that preschool-aged children with autism receive some form of applied behavioral analysis. Due to lack of sufficient funds, applied behavioral analysis is not extended to school going children with autism, and there is no fixed method of treatment (Brown et al., 2012). Funding and service delivery varies from province to province or depends on territory residence.
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Identifying and diagnosing autism at an early age is the first step to its management, followed by provision of precise information and education of parents and other family members. These are combined with supportive measures that are well planned to suit individual needs and are the continuous basis that helps the child to develop. Specially adapted nursery school, followed by schooling and adapted home environment, are important for the development of autistic children.
School nurses played a significant part in helping the young people with autism develop to attain their full potential (MacNeil, Lopes & Minnes, 2009). Nurses support children in physical exercises, healthy eating, and emotional health and wellbeing. They need to deliver a service to meet the specific needs of everyone considering their functioning levels. Working in collaboration helps the young individuals achieve their full potential, hence making a difference in their life. Staff training is critical to enhance proactive methodology and continuity of the resource utilization in autism alleviation.
The pattern surrounding the care and service delivery to persons with ID (Intellectual disabilities) is changing from a deficit-faced methodology to a support-based methodology. In addition, this is achieved by ensuring there is utilization of resources through assessing and allocating more resources to autism programs and systems (Marshall, 2014).
The first step to supporting individuals with autism is understanding the disorder and knowing how it affects different individuals. The focus should be made on specific age groups to bridge the research gap and give relevant information to policy makers and service providers in Canada. The factors looked for in diagnosing autism are the external display of the internal mechanism of autism. The support of management should include an understanding of the internal mechanism and not only the reaction to the external symptoms (MacNeil, Lopes & Minnes, 2009). Apart from the funds available for service provision, more funding has to be directed into research. More research on autism is needed to enable the restricting of the present efforts to properly manage and meet the broad needs of persons affected with autism. Service providers should also train their staff regularly to allow for continuity of quality service provision.
The new recommendation is the service utilization, which is achieved through the service providers. It ensures the available resources are utilized by assessing and allocating the programs and systems of limited resources according to priorities (Krahn & Fenton, 2012). They should also ensure there is a valid means of tailoring, planning, and measuring the effectiveness and efficiency of services according to the available evidence. The history of the past service utilization in autism treatment showed that there has been a restriction of information on the use of service pattern for children suffering ASD together with their families (Marshall, 2014). Although service utilization reduced the demand for the health care services by the affected children, this does not promote an early recognition of the patients’ needs. Several studies have examined the frequency and breadth of service used by children suffering from ASD (Fletcher, Markoulakis & Bryden, 2012). One of the American studies has shown that the percentage of children with ASD between 3 to 17 years who had seen a mental health professional was 54.8%, and only 44.9% of them had seen a medical specialist. In addition, those who had used special education service constituted 87.1% while those who saw a therapist amounted to 60.5 % ( Marshall, 2014).
Service utilization will be implemented through educating the affected individuals together with their families on the importance of visiting a health facility to get health services in order to reduce problems encountered due to ASD.
The Impact of Autism on the Family and Nurses
ASD affects one child in every 150 children, and it is believed that the prevalence is increasing. However, there is still a debate as to whether this drift owes to the increased awareness of the condition, improved diagnostic tools, or a real increase in the autism cases. Autism poses a major problem to both the family unit and the service system. Bringing up a child with autism is very challenging for the parents; it is related to marital unhappiness, maternal psychological trauma, and poor family structure.
Families suffering from the condition usually incur physical and emotional expenses as they have to deal with children who may have as challenging and complex behavior as autism. This in fact can lead to a significant degree of seclusion and even lack of sleep (Fletcher, Markoulakis & Bryden, 2012). According to the study by Brown et al. (2010), sixty-three percent of patients with autism live in the family, hence an increase in the family expenses due to extra care. The economic cost of autism treatment in younger persons is enormous as the cost of medications to control the condition is notably high.
The psychological impact of the disease on the family cannot be ignored. At a young age, a healthy person’s emotional and overall psychological status is expected to change in the future. However, autism hinders the expected development, which is further translated to stress in the family ( Brown et al., 2012). A young person with the disorder is likely to experience depression and other psychological problems, and this adds to the general cost of treatment. Autism complicates the life of children and their families to the extent that these people are sometimes neglected or admitted to nursing homes. It is important to note that a young person with autism is more at risk of getting other diseases, such as heart diseases and mental disorders. To identify the disease is problematic; the exercises are complicated, and adapting to a fixed routine is difficult for such people. Problems also arise in places where these patients live alone or with people who do not understand the requirements of care that should be provided to such patients. In these cases, the patients can easily face emotional and psychological tortures, hence death, which affects the entire family of the patient (Marshall, 2014).
On the part of nurses, who are the chief caretakers, there has always been difficulty in diagnosis in that there is no simple brain scan or blood test that can detect autism. Diagnosing autism is based on a complex interpretation of the child and the observed behaviors, which follow international agreed criteria (Gamez-Del-Estal et al., 2014). The professionals find it challenging to deal with a suspected condition, because they rely on personal interpretation, which is not a consistent, sharp tool. Dealing with children suffering from ASD is challenging for the teachers, nurses and family in that it is hard to separate the condition with other learning and mental difficulties. Nurses and parents often take long before suspecting that the child is suffering from autism, hence the need to diagnose.
The role nurses play in the treatment of autism has been manifested in the provision of health care. Care provision in a community setting by the nursing team involves a wide range of complex services (Brown et al., 2009). Nurses provide the focus on leadership and support to maximize the role of parents and teachers in alleviating the condition. High-quality nursing services in respect to autism have potential to reduce the use of the hospital sector and social care. Nurses are the sole providers of primary prevention strategies that highlight the general health promotion, health protection, and risk factor production to children.
Autism affects the development of a child and is characterized by numerous disruptive behaviors. It poses a burden to the nation and to the family unit, although it is the family unit that bears the heavier burden. Many families with a child suffering from autism report several unmet needs. Since autism is a lifelong disability with no known treatment, long-term strategies have to be planned to manage the condition. The method of care and service delivery to persons suffering from ASD is changing from a deficit-faced methodology to a support-based methodology. It achieved by ensuring there is utilization of resources through assessing and allocating more resources to autism programs and systems. In the management of autism, the focus should be made on specific age groups rather than grouping the individuals in a wide range age group. Lastly, nurses play a very important role in the management of ASD, and as such, more resources should be allocated to regular nurse training to ensure the continuity and improved quality of the services provided.