In this community observation, the struggles faced by caregivers of individuals with autism will be observed through the lens of a specific group on Reddit titled Autism Parenting. Though this community’s title says parenting, all types of caregivers are accepted. Uniquely to other subreddits that focus primarily on information regarding the child or individual with autism and issues they may face, this subreddit not only highlights issues faced by the individuals with autism but the strife faced by the caregivers as well. The community serves as more than a forum for quick advice and questions to be answered, but also as a therapeutic and welcoming place where caregivers who feel isolated have the opportunity to express and educate themselves, vent, share information, and have open discussions without fear of the stigma and judgment faced in society. This subreddit speaks on the personal experiences of caregivers of individuals with autism unapologetically, even when it is perceived negatively to focus on challenges regarding their role, especially personal ones. This makes this community a valuable resource for obtaining authentic insights into their experiences. Despite the efforts in mental health awareness, caregivers of individuals with autism are still marginalized by society due to inadequate support systems, insufficient information, financial strain, and social exclusion as a result of stigmatization.

Over the years, as new developments occur and an increasing diagnosis appears, the evolution of autism has made the condition both controversial and often difficult to understand. In the clinical setting, autism has in recent years been considered a spectrum disorder and is a neurodevelopmental condition closely associated with impairments in social communication and interaction, behavioral problems, cognitive inflexibility, and a range of other specifiers that indicate both the severity and type of autism on the spectrum. For the purpose of this observation, caregivers of children on the low to middle section of the spectrum were closely observed. A main controversial topic mentioned in the discussion of autism is both the spike in diagnosis and the over-medicalization of individuals with autism (O’reilly, 2020). Not only are individuals with autism sidelined and left in the dark by society, but so are the caregivers of these individuals, who bear the brunt of providing adequate care and being informed about what is best for the individual they are supporting. A caregiver for an individual with autism can be family members such as parents, siblings, and guardians, but they can also be teachers, therapists, or anyone who provides a large amount of support for the individual. As cases of autism spike and correct information is harder to find, caregivers are plagued with an additional set of issues when trying to provide adequate care for their loved ones due to stigmatization and marginalization. The community faces a multitude of issues trying to ensure their loved ones receive proper support to thrive in society. The unwavering support and resilience of the community of caregivers does not go without significant challenges, including social isolation, limited support and information, both financial and time constraints, and finally, a large amount of stress is placed on them that takes a toll on both the mental and physical. In attempts to provide stability, resources, and effective care, “parents and caregivers of children with ASD have reported significant stress and challenges in caregiving. However, stress coping research among parents and caregivers of children remains limited” (Lai & Oei, 2014). The caregivers of individuals with disabilities, specifically autism, as stated above, are ignored, putting them at greater risk for distress in several areas of their lives that not only impact themselves but the individual they provide care for as well.

Observing the shared issues experienced by caregivers of individuals with autism allows for the first step toward adequate treatment. Through the lens of the community of members in the subreddit, Autism Parenting, a clear pattern of specific problems was shared amongst many members in different ways in the weeklong observation, which took place relatively early in the school year. One of the first noticeable parts of the community is the breaking down of posts into topics. The community was very active, as the longest gap between posts was 2 hours, and many members responded quickly to individual queries and concerns. The topics “venting/needs support”, “advice needed,” and “education/school” being the three most tagged topics say a lot about the community regarding what most individuals struggle with. Additionally, there are moderators who worked together to create a pinned post with general rules, common questions, and definitions of shared language amongst the community. The shared language was mainly key words associated with autism and diagnosis, but in the community agreement, it was directly stated that individuals can use whatever language they like and to refrain from judging but rather correcting in a respectful manner. One very apparent issue faced in the community was confusion regarding diagnosis, treatment, specialized care, and educational resources to help their struggling child. Many expressed frustrations with the schools not being helpful or accommodating; others were confused by certain terms that were never explained to them and were thrown around regularly during diagnosis; and many were desperate, looking for any type of information that was not readily available to help their children. Within the public school system alone, “teachers reported several challenges, including understanding and managing behavior; socio-structural barriers (i.e., school policy; lack of training and resources); and creating an inclusive environment” (Lindsay, 2013). Due to this, many come to the group to ask the individuals who may have access to information and have children who attend schools that support sharing any valuable information. In addition to academic struggles, many expressed concerns with diagnosis and healthcare, ranging from confusion with diagnosis to doctors only prompting expensive treatments such as medicine or specific therapies.

Many of the individuals in the community face issues with intersectionality, as many come from low- or middle-class backgrounds. Members don’t have the funds to access certain information, special schools, or the ability to try treatments that may not work. Branching off of the previous observation regarding school and lack of resources, many complained about saving up for specialized schools for individuals with autism; one even discussed moving to another state for adequate schooling, which is not possible for many individuals in the forums. One post of many began to vent as they described their experience with role conflict—the inability to complete responsibilities for both roles as the actions tend to contradict each other. The individual vents about not knowing if she should quit her job to be more involved in her child’s life but needing to work to support her child’s expenses. Present research finds that one of the many causes of distress in caregivers of individuals with autism came from the conflict of being “motivated to continue employment because of the extra expenses caregiving imposed on them, but there are serious burdens on the way of their employment, such as a lack of proper childcare services and inflexible employment situations” (Samadi & Samadi, 2020). Despite their hard work, what is asked of a parent of an individual with autism is unrealistic and challenging for the average American and working-class individual to provide. The expensive treatment requires money, but it contradicts the advice of hands-on parenting, causing confusion and feelings of inadequacy. This suggests that caregivers of individuals with autism, especially those from low-income families, are marginalized by society as the solutions to their challenges seem unattainable and generally overlooked.

In the final key observation, referring to the community agreements, it is asked that members talk about how they feel and express themselves to the best of their ability, and most importantly, in a respectful manner. Many of the communities, including this one, had key language with definitions, but uniquely to this specific community, descriptions of special events and themed days were provided. One of the themed days that was pinned when observing on Wednesday was Weekly Win Wednesday, which is a thread pinned weekly where individuals discussed anything that went right that week, small or large, which allowed them to celebrate themselves and each other. Specifically, one individual praised this day as it provides positivity and support for individuals who are often excluded and don’t receive this support from loved ones due to stigma and ignorance. Surprisingly, this was a topic many vented about: issues faced with exclusion from family and friends, inability to attend events, feeling ostracized, and many other issues as a result of stigma. Many discussed feelings of loneliness from not being invited to places due to people not understanding their child’s disorder. This exclusion increases stress and risk factors as it stops many caregivers from having a reliable support system, which is later found vital to the overall well-being of the caregiver. In addition to feelings of exclusion, many vented regarding stress and being overwhelmed with their duties as caregivers, which piled on to other stressors. Researchers previously “observed a general trend towards higher levels of stress, depression, anxiety, anger, and negative affect when emotion-focused coping (e.g., disengagement, denial, and wishful thinking) was frequently employed”, not only for parents but for other types of caregivers such as siblings who also have their own stressors on top of the stress correlated with being a caregiver. It was found that social support and active coping combat this pattern of poor mood and stress while boosting mood and mental state (Lai & Oei, 2014). The lack of awareness and true understanding regarding autism, in addition to the unique needs of individuals with autism, often leads to societal isolation and intense feelings of loneliness and depression.

All in all, the Autism Parenting Reddit group does a tremendous job of building a well-rounded community that balances utilizing each other for important information regarding autism while also being an emotional support haven for caregivers. The most surprising yet disturbing thing to see within the group was the number of unethical cash grabs these caregivers had to rely on each other to avoid. Of course, there will be people who try to profit from others misfortune, but from the posts seen, it happens more often than one would think. From private mental health practices offering treatment that is expensive but unlikely to work to even members within the group trying to sell information and promote businesses sneakily, which luckily is caught by moderators. Another surprising part was how much of the post related to personal issues. Many discuss the financial burden and time constraints, but many never acknowledge the mental and emotional toll it takes on caregivers to provide efficient care. Caregivers of individuals with autism navigate a silent and lonely battle due to exclusion and ignorance from society, in addition to apprehension of seeming like they are complaining about fulfilling their vital role as caregivers for their loved ones. There is an apparent need for more resources and information, not just for individuals with disorders but for their caregivers as well, to promote better awareness. The members of the observed community have taken the first step of many to revolutionizing and empathizing with the experiences of caregivers, and it is vital that their struggles are acknowledged by society as well.