Societies Lack of Knowledge And Understanding
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Another barrier identified by par- ents was their rural community’s lack of knowledge and understanding. This resulted in families of cfiildren with autism facing a stigma of being differ- ent. To battle this stigma, parents taught their communities about autism while continuously advocating on their child’s behalf. According to the parficipants, the sfigma that families experienced was more often due to the lack of understanding of aurism rather than to people being judgmental.
Lack of knowledge, and that’s the biggest thing, like when I’ve gone up to those people or when we’ve held telehealth sessions, or when I was on the radio, and just the most com- mon thing was that people just didn’t know what it was. (P4)
Community members became aftaid of what they did not know, and people “were scared of the autism” (P14). Parücipating parents became vulnerable to premature judgments that were described by one partici- pant as “people will make judgments. Most of their judgments were of igno- rance. They don’t even know what it is” (P15). Most parents perceived that others viewed them to be “bad par- ents” and their children with aurism to be “bad children.” One parent expressed: “the things that would really frustrate me are just people that automatically assume that he’s just a bad child if he’s misbehaving in pub- lic” (P4). Another mother stated: “If I take him into the store now, and he’s 7, and he’s this big, and he starts act- ing up, then I’m the bad parent, right?” (P16). Afthough parents acknowledged it was society’s lack of understanding that led to these judg- ments, parents nonetheless felt angry and disheartened. One participant reinforced: “You get home, and you’re just destroyed because it replays in your mind, and it is like why are peo- ple so ignorant? I know they don’t understand, but how do I make them understand?” (P22).
Making the invisible, visible was one way parents were able to help their child become an accepted member of their rural community and enabled the best possible life for their child. Families found that the best strategy was to be open, honest, and to share the diagnosis of aufism with their community. The more parents talked about autism, and the more they explained and taught the community, the more support they received. Through this openness, one parent described their community as: “It’s more of a welcoming community now like we’re finding that we’re not being judged as much” (P4). By making auüsm visible, communiries became more knowledgeable and understand- ing, and instead of sending feelings of isolarion and srigmatism, communi- ries became a family of support.
Doing It on Our Own From diagnosis to treatment to
advocaring, “doing it on our own” emerged as the third major barrier in the essence of making the invisible, visi- ble. From inirial diagnosis, parents felt they were on their own. One parüci- pant stated: “I feel like there should be someone following him, and I don’t know if they typically do; it’s kind of
like they diagnose them, and then you’re done” (P23). Parents used their surrounding environment to seek out as much informarion as they could. Parents used the media, Internet, TV, books, close fiiends, and relatives. Following diagnosis, parents searched to find what was offered for their child, what services were obtainable, and how they were able to access them.
All parents received a diagnosis of autism for their child and were never seen again by the specialist or even a pediatrician or rural physician for any follow up in regards to the diagnosis of autism.
That to me is frustrating because I’ve often used the analogy if you were diagnosed with cancer even though it would be the nurses that might give you the treatment and the radiation specialist who give you the radiation, you’d still be followed up by your doctor, and that just doesn’t seem to exist (P15)
Parents stressed that a follow-up appointment soon after the diagnosis period with the specialist or their child’s physician would have provid- ed the opportunity for them to fur- ther discuss and learn more about aurism. Multiple parents menrioned that “they should really have, after the diagnosis, some type of book or something” (P5). Parents were thrown into the world of autism with limited knowledge regarding the characteris- rics and demands of this diagnosis.
Parents had to be the one to ad- vocate for their child; they had to bat- tle the health care system along with the educational system. To parents, “the system” referred to the array of appropriate services, including heath care professionals and the education- al settings that were designed to enable success in children with autism but were often inaccessible. Getting the required support and services only came through persist- ence and determination.
I applied and was denied, I was applied and denied, applied and denied…And I finally called there, and I spoke to a very nice gentle- man, and I said, “What do I have to do [to receive an educational assis- tant for their child diagnosed with autism]?” (P9)
Parents were on their own with educating themselves, seeking out
PEDIATRIC NURSING/September-October 2013/Vol. 39/No. 5 235
The Lived Experience of Parenting a Child with Autism in a Rural Area: Making the Invisible, Visible
services, and finding respite workers. As one parent described the difficulty of obtaining a respite worker: “He told me right off the bat that he did not have anybody that could come out here and that if I wanted some- one, I’d probably have to do my best to find them” (PI).
Participating families believed that in terms of autism, rural commu- nities had less of everything and lacked services and resources. Rural communities lacked diversity of serv- ices and professionals who were able to work with children with autism. Although living rurally meant they did not have access to certain services and resources, parents learned to use all they had to their advantage. Overall, participating parents believed when living in a rural community and parenting a child with autism, they were often on their own in terms of resources, services, and fulfilling their everyday needs of parenting a child with autism.
Discussion
The Essence of the Experience Making the invisible, visible emerg-
ed as the ultimate essence of parents’ lived experience of parenting a child with autism while living in a rural area. Ray (2001) first intiroduced the phenomenon of making the invisible visible in the context of childhood chronic illness. Specifically, Ray (2001) described the invisible work required by parents in parenting a child with a chronic illness or disabil- ity and the skilled responsibilities par- ents assume that need to be made vis- ible. However, instead of having a focus on the disability itself, Ray (2001) described parents’ experiences of making the invisible responsibili- ties and challenges that incur when caring for a child with disabilities vis- ible. Comparable to the study by Ray (2001), parents parenting a child with autism spoke to the time and commit- ment spent preparing their child to function in the social world and in their community. Parents described the consuming daily activities, such as grooming, dressing, and communi- cation, that all took longer with a child with autism. Although they did not have to learn specific medical aspects as did the parents in Ray’s (2001) study, they had to be vigilant, consistent, and prepared for the unknowns of autism.
In the context of autism, the invisibility of autism is documented throughout the literature (Cashin, 2004; Glass, 2001; Gray, 1993, 2002; Midence & O’Neill, 1999; Woodgate et al., 2008). Parenting a child with autism can be a challenging and frus- trating experience due to the invisible nature of the disability. Gray (1993, 2002) found that the invisibility of autism was associated with increased stress in families, causing a sense of isolation. Exacerbating this stress in Gray’s (1993, 2002) stiidies was the extreme disruptive behavior and social inappropriateness of the child with autism. Many parents in this rural study had similar feelings and experiences as those described by Gray (1993, 2002).
Comparable to the research of urban parents by Woodgate et al. (2008) and Gray (2002), rural parents described similar feelings of isolation when autism was invisible in their community. Fortunately, for parents in this rural article, this isolation felt from others dissipated once autism became visible in their community. Unlike the article by Woodgate et al. (2008), parents of rural communities failed to use the term “isolation” to define life with autism, rather to only use the word to describe the lack of available professional support and services. The support rural communi- ties provided enabled parents a sense of inclusion, and therefore, disbanded the sense of isolation that was described by the urban parents of research by Woodgate et al. (2008), Gray (2002), and Mackey and Goddard (2006). A discussion of each theme of the essence will be exam- ined by incorporating a comparison of previous research findings to those of this article.
He’s Not the Rain Man Limited knowledge and under-
standing of autism by participants led to initial reactions of fear, denial, and shock. Sen and Yurtsever (2007) explored the initial reactions of rural parents when they first learned their child was disabled. Similar to rural parents of children with autism in this article, shock, denial, suffering, and depression were described as pri- mary reactions of parents in the arti- cle by Sen and Yurtsever (2007). Further, Midence and O’Neill (1999) described reactions of confusion and feelings of guilt and despair by the rural parents of children with autism.
However, both above mentioned arti- cles described the importance of par- ents reaching acceptance. In this arti- cle of rural families, autism became visible to parents by the research and education they sought. In under- standing autism, parents became empowered to make the right choices for their child, allowing them to pro- vide the best life possible. Under- standing autism enabled parents to understand their child.