The role of caregivers is both demanding and very rewarding. This role causes flexibility, patience and substantial commitment in every aspect of life including emotional, financial and even occasionally, physical. In this paper I will be focusing on parents and caregivers of individuals with autism. As an individual who once was ignorant of these struggles until having to witness them firsthand, I realized that this was an issue many faces alone and in silence. Witnessing my cousin suffer with severe anxiety attacks from feelings of inadequacy, parental stress and feelings of hopelessness, I became acutely aware of her struggle. It dawned on me that there were others facing similar strife if not worse with even less support and resources. This experience along with observation of specific caregivers of individuals with autism community, raised the following question: In what ways can we provide adequate support to reduce the amount of stress and societal exclusion of caregivers? This review will delve into existing research regarding this question, focusing on the issue of lack of resources plaguing the caregivers of individuals with autism community.

Autism spectrum disorder is a now very common disorder that has had many advancements and new information as time progresses. This complex neurodevelopmental disorder presents itself in those diagnosed in a multitude of ways as some people have more severe side effects while others have a slightly easier time adjusting with their disorder than others. Caregivers of these individuals play a pivotal role in their progression and success, taking responsibility for their loved ones with autism spectrum disorder (ASD) such as providing them with a structured routine and environment catered to their needs as well as educational and emotional support for their child when they are deprived it in school systems. In doing so, the individuals who assume the role as caregivers encounter multiple challenges that cause them to be ostracized from society. Despite their pivotal impact there is not much information or resources for this community. Lack of understanding and misconceptions about autism, impotent support to circumvent high stress levels alongside failure of systems to adequately support individuals with autism, leaves a large burden on caregivers to bridge the gap.

In the review paper, Coping in Parents and Caregivers of Children with Autism Spectrum Disorders (ASD): a Review, written by Wei Wei Lai and Tian Po S Oei published in June of 2014, research is done on the information regarding coping and support strategies for caregivers of individuals with autism, or rather lack thereof. In highlighting the lack of empirical evidence for supporting caregivers, there is a call to action to mental health professionals and researchers to investigate and obtain more information to provide the caregivers with as their role is crucial yet stressful. The paper first introduces the topic and describes why caregivers of individuals with autism are important in the success of their children. Then it moves forward to emphasizing and highlighting specific caveats faced by caregivers beyond the immediate care of their loved ones with autism such as lack of social support before delving into the inadequacy in research regarding coping with these issues. This text is insightful for my thesis as it provides facts regarding what problems caregivers of individuals with ASD face while also providing some insight on which techniques may be helpful, such as topic based information and community learning, from the little empirical evidence there is and mentioning the need for more resources.

In an excerpt from International Journal of Disability titled, Educators’ Challenges of Including Children with Autism Spectrum Disorder in Mainstream Classrooms, published by Sally Lindsay in 2013, a formal discussion of one of the many issues faced by caregivers of individuals with Autism is given. The paper highlights challenges faced by teachers, which to some may be considered caregivers, for individuals with autism. The excerpt speaks on how despite the inclusion which may indicate progressiveness, through a qualitative study, there are still large challenges reported by teachers including lack of training and resources in addition to inability to create an inclusive environment. In conclusion of the study, all of teachers agree that “more resources, training and support are needed to enhance the education and inclusion of children with ASD.”. This text is essential to the above thesis as it shows how the community is marginalized and even the trained professionals don’t have adequate resources. This leads to parents having to step up and pick up the slack left by a failure of the school system and ultimately parental stress. Information is presented about what teachers believe is needed to best aid them and I will implement that into my website as well. In addition to highlighting a clear issue, there are also recommendations held in this paper which can be utilized in the advocacy plan, moreover, reducing stress and exclusion.

Understanding Different Aspects of Caregiving for Individuals with Autism Spectrum Disorders (ASDs) a Narrative Review of the Literature written and published by Hadi Samadi and Sayyed Ali Samadi, discusses caregiver-based research on the Autism Spectrum disorder topic. The paper focuses on the specific ways Autism spectrum disorders impact caregivers from stress to overall quality of life for main caregivers and family members. This differs from previous text as this text mentions positive aspects of being a caregiver to an individual with ASD such as parental resilience and appreciation of life and family, conversely to most reviews that only state the negatives. In addition to this, the paper highlights, similarly to the previous text, the lack of research in this field. For example, when researching the impact of ASD on caregivers, ASD is considered like a general diagnosis despite it being a spectrum where some symptoms are a lot worse than others and hence why some parents/caregivers may struggle more. This source will be useful because of its discussion of understanding different aspects of caregivers and differentiating it by what is demanded from them based on the placement of the individual they are providing care for on the spectrum. Highlighting this issue, it shows why different methods and workshops need to be provided since the issues faced by caregivers are diverse and often unique to their specific situations which I can implicate into my advocacy plan. Furthermore, the addition of the positive impacts can be used to reinforce and motivate caregivers when put on the page instead of only focusing on the negative impacts of ASD on families and caregivers. Finally, there is also information that scientifically proves and explains the raised stress levels and higher rates of depression amongst these caregivers, while also showing the correlation between less stress caregivers and better wellbeing of individuals with autism which will back up the importance of caregiver support.

Self-reported needs of caregivers of people with Autism Spectrum Disorder by Claire Colombet, Celine Alcaraz and others conduct a formal study and reflects on the specific needs of caregivers. This paper details a questionnaire that was sent out to over 1,000 caregivers of individuals with autism in 2020 in Europe. This descriptive study introduced the perspectives of individuals of caregivers in detailed accounts, formalizing information that may be seen in online communities similar to the one observed for the community observation. This paper will be useful and helped me arrive at my thesis as it upheld the information inferred in my community observation by highlighting the similar issues faced by this widespread community in a different country. This detailed from the community’s perspective both what is asked of them in their role as a caregiver but also what they believe they need help with. A limitation with this source is the culture differences, though it shows that this problem is widespread, it doesn’t take into account the cultural differences of the United States and other countries in Europe, for example issues regarding health care would differ and would not be reflected in this study. However, the information in the results portion relates directly to my thesis as a large percentage of people in the study agreed with having lack of resources, needing specialized support in addition to scientific backing regarding increased stress of autism caregivers more than any other caregiver group with neurodevelopmental disorders. In addition to this it highlighted caregivers desire for need-based and more specified information rather than the general information on the internet which will be used in my discussion of specific topic workshops and information and allow me to better tailor my website to this shared need.

In the chapter, Autism in the Twentieth Century: An evolution of a controversial condition., by Michelle O’Reilly, Autism Spectrum disorder is defined and discussed in both the historical and current context. The chapter describes developments made regarding the disorder from its origin to modern understanding, discussing also the social opinions and stigma surrounding the disorder as it evolves. Subjectively discussing the scientific changes throughout history first, the paper later goes on to discuss the fragmented perspectives and misinformation as a result of constantly changing developments and cultural movements such as the neurodiversity movement. This chapter was integral to my project as it allowed me to get insight into Autism itself. By gaining knowledge about the disorder itself, I can better inform caregivers of important information that may be confusing. Additionally, by understanding social perspectives and stigma regarding autism highlighted in the chapter, I can better build my website by knowing what language is best to use, fact check any research I do elsewhere to include on my site with information provided in the chapter and gives me ideas for which perspectives may encounter my website and how to best add something that can help everyone. Finally, this paper also highlighted what causes stigma and misinformation in today’s society stating how such large volumes of information is difficult for caregivers to understand which also shaped my creative project as try to keep things as simple as possible and allow readers to find more in-depth information elsewhere.

The five articles have aided me in answering my research questions, formulating my thesis and providing factual support to observations formed in the community observation. These articles provide an insightful understanding of the autism spectrum disorder, issues caregivers face, their importance and role to their loved one with autism and finally what type of assistance is needed to provide adequate support and reduce stress. Specific topics and areas of focus such as lack resources surrounding behavior or treatment for their loved one is given alongside information on the stress caused and the best ways highlighted so far in the little research to reduce stress for caregivers. The weaknesses of these articles as they would state themselves is lack of empirical evidence from research, many are just discussing the little research that is already available. Additionally, many of the texts may be biased as they include a lot of their opinions. Nevertheless, the strengths are that alongside credible facts, the perspective presented is that of caregivers themselves or those who have thoroughly examined information regarding caregivers and are in support of them. Therefore, the information provided resembles the needs of caregivers the most with their best interests in mind. The research from the above articles aligned with the main issues found in the community observation, lack of information and exclusion were the two main pressing issues for this community. Moving forward, more research needs to be done on caregivers themselves, focusing on their wellbeing and aiding them, which will enable them to better care for the children under their guardianship. Additionally, awareness about autism and its affects is vital in the reduction of stigma and misinformation that also leads to caregiver stress. To conclude, I would inquire in the future about how institutions such as schools support caregivers more in their role and in what ways issues of misinformation and stigma surrounding autism can be addressed.