Developmental Disorders and Parents

¶ … Parents, Children and the Search for Identity Initial Responses Before engaging with the reading material and conducting some preliminary research, my knowledge of the autistic spectrum was definitely limited. I have never known anyone directly that dealt with autism and my only exposure the disorder came from classwork and through the media. My feelings about the disorder were something along the lines of that it was a serious condition and had to be difficult for the parents, or that savant type manifestation was incredibly interesting.

I assumed that parents in general had access to resources that could help them mitigate the worst symptoms of living with the disorder. I assumed that evidence-based practices were likely well-developed and there were pretty clear pathways to help these individuals. However, not having any exposure to personal stories about what it is actually like to directly live with this condition, I did not fully realize the complexities that are associated autism on many different levels.

Reading Overview In the book "Far From the Trees" by Andrew Solomon, the author opens the chapter on Autism (chapter 5) with some personal accounts of different families and how having children with Autism has affect their lives (Solomon, 2013). Many of the stories that are outlined are heart wrenching, although there are some that are also of the heartwarming variety. The author does an exception job of providing a brief snapshot of what the emotional challenges that parents who have Autistic children face.

While most people may be vaguely familiar with what autism entails, I doubt that most people, including myself, can honestly appreciate how hard it must be at times. For example, the lack of sleep, risks of physical aggression, the lack of any reciprocal affection, and a host of other related symptoms would be incredibly difficult to cope with on any continuous basis.

Another aspect of the story is definitely the debate that is surrounding the best of course of action to continue to research what factors might be responsible for the manifestation of autism in children. The debate is obviously one that is deeply emotional to a lot of people and also one that is highly polarized as people have ascribed themselves to rigid assumptions about the causes.

Although it is entirely reasonable that people have such an emotional response to such issues, it does put a considerable amount of pressure on the scientific process as well. Science must concern itself with the best evidence that is available and to try to work with the data as objectively as possible. It appears to be the case that many peoples' emotional have certainly clouded their capacity to be objective.

Reading Solomon's chapter on autism definitely provides a more holistic picture of the types of considerations that should be made, which are most likely often missed. Raising a child with an autism spectrum disorder (ASD), that lies anywhere on the spectrum, can be a tough challenge for not only the individual diagnosed, but also the family that supports them. These children can make caregiving difficult, sometimes dangerous, which creates a high-level of stress and is also correlated with higher rates of divorce and family problems.

According to one study, approximately 85 % of individuals with ASD have cognitive and/or other limitations that limit their ability to live independently, and it is often the case that they will need some measure of care or assistance from their parents and families for much of their natural lives (Karst & Van Hecke, 2012). The mental health and the well-being of the parents seem to be one of the critical considerations that is often missed however.

It is common for parents in this situation to experience decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders (Karst & Van Hecke, 2012).

Caring for a child with autism spectrum disorders (ASD) has been studied over the last several decades and parents of children with ASD typically report higher levels of parenting stress and higher affective symptoms when compared to parents of typically developing children and parents of children with other disabilities (Davis & Carter, 2008). In fact, the end of Solomon's chapter illustrates many stories in which parents have taken the lives of their children with ASD, which represents the full extent of the desperation that can often arise in such situations.

What truly defines nursing and sets it apart from any other healthcare profession especially medicine is the fact that it mainly focuses on the response of the individual and the family to actual or potential health problems (Watson, 2008). While doctors and specialist are often focused on the symptoms and the biomechanical issues, nurses are on the front lines of healthcare delivery and can have a more direct impact on many aspects of the individual's wellbeing.

Nurses are responsible for assessing and monitoring patients, determining what patients need to attain and preserve their health and taking a holistic approach (Kim & Kollak, 2006). In regards to treating a family with ASD, it is vital that nurses look at the situation from a broad perspective and consider all of the relevant challenges that the family is facing.

Using such a perspective could help parents, as well as a ASD diagnosed child, to identify and pursue any secondary treatments that might be effective, but not typically the reasons why families seek care. Implications One of the most evident implications that was gained by reviewing the content in this chapter, is the role that evidence can have on helping to mitigate the bipolar nature of the range of views that are demanding certain courses of research from the scientist that are working on the ASD situation.

One way that nurses can address individuals in this environment is to focus on the evidence and try to circumvent the ideological and emotional arguments that are being proposed by certain families and researchers that are dealing with ASD. Evidence can be a vital aspect to nursing and by focusing on the latest advancements in evidence-based practices (EBP) can help guide any treatment strategies that are identified.

Furthermore, another aspect to focusing on this perspective, is that it can also help to further to research and continue to develop evidence-based practices required for policy makers to devote resources to thing such as ongoing training, robust data collection, organizational changes, and providing adequate funding and not states were willing to make these types of investments a priority (Seave, 2011).

The Individuals with Disabilities Education Act (IDEA) made headway to ensure that students with disabilities were educated, however it did not require minimum standards or any type of regulation that could assess the effectiveness of services provided (Spaulding, 2009). While education has largely benefited from the use of an evidence-based practices approach and methodology, the polarizing nature of the opinions that surround ASD undoubtedly makes it difficult to legislators to both draft and find support for public.