Parents Play an Important Role in Managing Autistic Children - Research Paper Example

Parents Play an Important Role in Managing Autistic Children Having an autistic child could be a great challenge to most parents, especially if the parent lacks adequate skills in handling the child. The behaviors exhibited by such children could cause the parents to worry and probably fail to provide the appropriate care. But most researchers support the role that parents play in dealing with autistic children as teachers, proponents of appropriate intervention, in the administration of their needs and in research on autism. Even so, there are scholars who have argued on the ethical implication of using children in research and others who argue on therapists as better suited in handling autistic children other than their parents. From the research in this paper, it would be shown that indeed, parents play a critical role in ensuring that autistic children become manageable. Introduction Autism refers to a core disorder among the pervasive developmental disorders which evidences before age 3. The National Institute of Mental Health, NIMH describes autism as a syndrome rather than disease and also as a developmental disorder, hence its influence on growth and development aspects. This has been attributed to genetic factors, environmental causes and brain injury. It has been acknowledged as a dimension and conceived as a spectrum that causes children to have varied degrees of complications in communication, lack of imagination, exhibition of repetitive behaviors and difficulty in social interaction. The constantly revised prevalence of autism ranges between five to sixty cases for every 10,000 children aged 18 and below without the consideration of less severe forms of the disorder such as pervasive developmental disorders and Asperger’s disorder (Altiere and Kluge 83). McConachie and Diggle (120) cite the male to female ratio of prevalence at 4.8:1. Any chronic illness presents serious challenges to the individual and the individual’s family at large. But autism has been considered among the most challenging to manage of these disorders with various scholars citing varied challenging traits exhibited by autistic children making it difficult to offer appropriate care like that given to normal children. According to Altiere and Kluge (83), autism would be characterized by communication impairment, self-destructive and aggressive behaviors and low social functioning. In addition to language problems among such children, there would also be troublesome symptoms which include inappropriate public behavior, tantrums and self destructive behaviors. Autistic children present stressors and unique challenges to the parents due to the ambiguity in diagnosis, lack of adherence to the norms of the society and the long duration and severity of the disorder (Altiere and Kluge 83). In as much as autism symptoms would be exhibited in early childhood, it takes long before appropriate diagnosis would be done. The process of diagnosis would normally be complicated especially when a biological marker misses, encountering such problems among medical practitioners becomes infrequent and due to the normal variations that exist in child development. Even with the diagnosis of autism, the problem of unavailability of treatment persists. Most children would be diagnosed as retarded hence the administration of the wrong approach to treatment (Kogan et al. 1398). The public knows little on autism hence the hostility and insensitivity from the public on parents of autistic children who behave inappropriately in public. The prognosis of autism has also been noted to be limited. Therefore, the important role that parents being part of the family unit would play in ensuring that autistic conditions in their children become manageable to a larger extent should be appreciated. Even though majority of studies have focused on mother-autistic child relationship, fathers too have a parental role to play in managing autistic children. The involvement of both parents in the care of the autistic child would be significant in yielding positive outcomes. The first role that researchers have argued parents with autistic children should play is acting as teachers. This rides on the fact that parents would normally be the maiden teachers for children. Prior to enrolling a child in school, the parent should have extensively researched on the appropriate classroom setting for the child that would best suit the abilities and disabilities of the child (Altiere and Kluge 89). This should be accompanied by appropriate coaching for the child to fit in the setting. On the other hand, some researchers have argued against the need for incorporating teachers of autistic children in raising-up a child as soon as autistic conditions exhibit themselves. Parents have been observed to hop from a school to another with their autistic child, not because the teachers of the respective schools lack the skills to manage their children but because they do not understand what it takes to mange such children. According to Macks and Reeve (1064), such teachers would have better experience than parents due to handling several cases and would therefore offer more effective support than the parents. Secondly, researchers have argued on the importance of parents in research on autism. Appropriate research should be constantly carried out to inform the society on measures to undertake so to enhance the management of autistic children. One of the sources of relevant data has been primarily from parents of autistic children. In fact, parents would first diagnose their children with autism before even professionals would familiarize with the disorder. While professionals would associate the disorder with “refrigerator parents,” Grindle, et al. observe that atypical social tendencies together with the intellectualism of autistic children’s parents point towards mild autistic tendencies, currently referred to as broader autism phenotype among researchers in this field (44). Other scholars argue on the importance of parents in informing researchers and professionals on autism as a developmental disorder with the various evidences provided by parents helping the US Office of Special Education amend its definition of autism from an emotional disorder of high severity to adoption of the developmental aspect as indicated by NIMH. It was out of such lobbying from parents that the US Combating Autism Act was enacted in addition to their role of managing respective grants. Most researchers would not share genetic samples in spite of the need for large samples to study the complexity and heterogeneous nature of the genetic disorder. Kogan et al. (1397) observed parents reaching out to other parents and together contributing to the relevant gene banks with the condition of publication and sharing of the gathered data. At the moment, qualified researchers access the gene bank for their various research purposes. But this has not gone without criticism from people citing the emotional and ethical implications of such actions (Macks and Reeve 1066). Parents also serve as proponents of appropriate intervention techniques for children with autism. On this third role of autistic children’s parents, Grindle et al. (53) note that the Loovas technique gained popularity because of the lobbying by parents. Parental participation plays a central role in managing behaviors of children with autism. While some parents would pursue medical treatment, others would choose to adopt alternative treatments including provision for nutritional supplements, elimination diets and detox therapies. Parents have also widened the body of knowledge in autism by arguing out on the distinct subsets of autistic children, for example those with historic gastrointestinal and regression problems. Furthermore, parents have also informed on the correlation between vaccines and preservative thimerosal and the rise in rates of autism due to delays among physicians in vaccinating until the removal of thimerosal. However, there has been no empirical evidence to prove the existence of this relationship according to NIMH. Finally, parents would also be charged with administrative duties to their children with autism. According to Grindle et al. (53), these administrative duties include creation of teaching materials and liaising with service providers to ensure that these children access relevant teaching materials and lending libraries to provide the needed teaching materials. In addition to offering such materials, they would also be charged with educating these autistic children on the meanings associated with photographs, speech, physical gestures and literature on top of instilling a wider range of meaning in communication methods. But Kogan et al. (1400) observe that this role should be left to social workers due to the intensive training undertaken, giving them greater capacity and capability to handle such issues. Even with the various benefits that families and the society at large stand to gain from the involvement of parents in managing autistic children, some scholars still perceive other approaches as more effective. While arguing on the difficulties associated with training parents through appropriate programs such as the early intensive behavioral intervention, EIBI, some researchers advocate for the use of qualified therapists in handling autistic children. From their study, Grindle et al. obtained complaints from parents on the difficulty involved in managing autistic children, only comparable to “running your own business and there is a lot of work, the accounts, sending off invoices to the LEA and all that sort of stuff which is very time consuming” (48). But the respective therapists would undergo the required training and would be prepared to handle any situations related to autism in the children. More so, these therapists could offer much from their experience and encounters with various similar cases. Macks and Reeve noted that “parents spend so much time attending to needs of the child with autism that they really do not have an accurate view of the sibling’s social and emotional functioning” (1065). Under a similar argument, McConachie and Diggle (122) observe that for a child to exhibit positive outcomes, the parent has to be well trained on management approaches which would always be costly considering that for each autistic child at least one parent would be trained. This has been contrasted to training a pool of therapists who would attend to a varied number of autistic children. Implication of parents’ role on autistic children Based on the importance that this paper attaches to parents in managing autism among the affected children, it would be important to equip such parents with the necessary skills to execute their responsibilities. To successfully accomplish this objective, McConachie and Diggle (121) recommend that parents be involved in the implementation of intervention strategies to help these children. Training parents to serve as co-therapists would ensure consistent handling and appropriate intervention in enhancing the social relationships of the child at an early stage. Grindle et al. (42) introduce the concept of EIBI where parents employ the applied behavior analysis, ABA principles to cause improvements among their autistic children, including the development of skills needed in controlling challenging behavior. Such trainings yield a myriad of benefits among the parents including renewed confidence, increased skills and reduced stress in not only the parents but also the children. Conclusion In a much as there have been arguments against the importance of involving parents in caring for autistic children citing their inexperience as compared to therapists and the complexity involved, more research studies continue to support the important role played by parents in managing autistic children. These parents play the role of teachers, support research studies, informing appropriate intervention techniques and being administrators of the needs of autistic children. These various roles yield benefits including confidence, more skills and reduced stress among parents and children. Thus, parents are a critical component in offering proper management to autistic children. Works Cited Altiere, Matthew J. and Silvia von Kluge. Family Functioning and Coping Behaviors in Parents of Children with Autism. Journal of Child and Family Studies 18 (2009): 83 – 92. Grindle, C. F., et al. Parents’ Experiences of Home-Based Applied Behavior Analysis Programs for Young Children with Autism. Journal of Autism Developmental Disorders 39 (2009): 42 – 56. Kogan, M. D., et al. Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007. Official Journal of the American Academy of Pediatrics 124.5 (2009): 1395 – 1403. Macks, R. J., and Ronald E. Reeve. The Adjustment of Non-Disabled Siblings of Children with Autism. Journal of Autism and Developmental Disorders 37.6 (2007): 1060 – 1067. McConachie, Helen and Tim Diggle. Parent Implemented Early Intervention for Young Children with Autism Spectrum Disorder: A Systematic Review. Journal of Evaluation in Clinical Practice 13.1 (2007): 120 – 129. National Institute of Mental Health. An Introduction to Autism. 6 July 2012. Web. 4 December 2012 Read More