Community Observation – Autism Forum 

Every community is different in their own ways and through observing how members of a community interact with one another, one can gain a unique understanding of that community. Over the past few weeks, I have been observing an online forum for individuals with Autism. Both the individuals and the language used are unique and differ greatly from many online forums. Most people online use casual, informal language, but because these users have Autism and therefore have social deficits, they use very formal language and are very careful about their word choices. The users on the site have almost all been diagnosed with Autism Spectrum Disorder and have issues communicating, distinguishing social cues and tone, and generally hold a very different worldview. People with Autism also have restricted interests and involve in repetitive behaviors; as said on MedlinePlus, “they may often seem to be in their own world” (Autism Spectrum Disorder, 2020). I chose to focus on this community knowing the interactions and relationships would be different from most other communities. As a Registered Behavior Technician, I have worked with children diagnosed with Autism and have been trained on how to work with and understand these individuals. However, through my work and education on the subject, I have only seen things from an outsider’s perspective. With this study, I was able to venture into their internal experiences and thoughts about certain social situations and their relationships. 

The individuals on this site have major psychological similarities and therefore have a lot in common when it comes to handling and experiencing day to day situations. This is a big part of what makes them a community. People with autism think differently than people without, and because of this they see the world in a different way. Members of this site are inquisitive about each other’s lives, post pictures of their animals and/or themselves, post blog posts, share opinions, and chat about situations they face or struggles they can relate to as individuals with autism. This community is often misunderstood and having social deficits leads to a decreased ability to advocate for themselves. Many have shared experiences of being misunderstood in their friendships or relationships when stating their opinion or what they want, as well as not being able to deviate from their normal routines (another challenge given with Autism) and have asked for help in this arena by posting the situation and the issue that followed. Individuals with Autism often come to see themselves as less than allistics (meaning people who are not on the spectrum). The way they interact with the world is very different, and the belief that they are different, when seen in a negative way, has hindered their ability to advocate for themselves, form friendships and romantic relationships, and has impacted the general happiness of many with Autism. Because of this forum, this community has found a place to discuss these issues with one another and provide support to each other, while also getting to express themselves free of judgement and with others who can relate.  

The people on this site are very welcoming and understanding toward each other. They often just want to relate to someone else and not feel alone in their experience or thoughts (many post titles are ended with, “can anyone relate?”). There are also posts asking what others like to do or eat, as they are trying to get to know each other. They address each other in a respectful way, often clarifying that they mean not to be sarcastic, rude, or judgmental, but that they’re just expressing their opinions. In an introductory thread made by a new user in his early twenties, many users posted things like “welcome”, “glad to have you here”, and things along the lines of this. One response jumped out at me and gives a good insight into who these people are and what they use the forum for. Susan, a 63-year-old from Florida, responded with, “Welcome Arete. Hope you enjoy our little community here and find you can talk about just about anything. It’s the only place I can do that and feel comfortable” (A., 2020). I found her honesty and her welcoming to someone of a completely different age group interesting. It seems that on this forum there is not a large divide between people of different ages, races, or backgrounds. They are all here solely to support and connect with one another, and have found a refuge here. 

There are roughly 15,718 members, mainly people with Autism, but there are some on the site who have family or friends with the disorder. This information can be found on the site as well as who is active, and the personal information they choose to share. There is a section on the site which lists notable members, either by most posts, media (pictures or videos shared), or points/trophies (a system to reward members for participation). There appear to be 5 staff members, including 2 administrators and 3 moderators. Though there are staff on this site, the real leaders are the individuals who post regularly and thoughtfully about situations and questions they think about and experience. These people are facilitating discussion and creating a safe space for expression. A 26-year-old female user with Autism known as Butterfly88 is one of these well-known members. She’s been on the forum for five years now and has sent over 21,000 messages. Most of her discussion posts are asking about others who experience the same feelings and views on certain situations or asking questions about how others have learned to deal with things like social isolation during Covid, or interacting with strangers or people she has a romantic attraction to. She’s also created a thread starting a word association game of sorts that has turned into something many members do for fun and to get to know each other. She shares pictures of her dog Lilly and has around 70 friends on this site, many of whom she keeps in contact with on a regular basis through discussion posts and birthday messages. Butterfly88 has created her own family here, and is comfortable enough to share how she feels about situations as well as ask for input on things that she wants to make improvements upon within herself. She is a perfect example of how this communities’ leaders come from the inside and take it upon themselves to create a sense of family and safety here.  

The site staff is not very active in discussion and is mainly there to enforce the code of conduct. It states members aren’t allowed to be offensive or use harsh language to attack or harass another member, discrimination or the use of hate speech is not allowed, being respectful and courteous to others is expected, it is strongly suggested that posts are not made too short (ex: I agree, nice) because it doesn’t add to the discussion, it is not allowed to share anyone else’s personal information without consent, and the code informs about the admin’s right to warn, ban, and delete the account of anyone using the site improperly. There are a few other rules, but these are the main ones. I have observed nothing but honest and respectful communication between members and it is clear that people come from all different age groups and ethnicities to discuss questions and talk about issues on this forum with this sole intent, and not to slander or berate others; it is truly a community of supportive and friendly people. It is not like most forums because of the social capabilities and deficits individuals with autism experience; it is often harder for them to communicate and relate with others. This makes the posts different from those on typical forums because of the phrasing and worldview these individuals have. Their language is often very formal, and they talk about how others notice and point this out. On a post about social skills, a member suggested forming a zoom club to practice conversing with each other to become more comfortable with their social skills. Although they have these social deficits and do not communicate in the same way a neurotypical person would, they show respect and open-mindedness towards each other and a desire to help each other out. There are many ways people with Autism are supported and protected by each other, but there are also several things in place by governing bodies and school districts that work to support these individuals as well.  

The Americans with Disabilities Act (ADA) of 1990 was enacted to ensure that individuals with any sort of disability were not discriminated against regarding social services and that their civil rights were advocated for. This was created because many with disabilities, whether intellectual or physical, are not able to advocate for themselves: “The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public” (What is the Americans with Disabilities Act?, 2020). Another way that people with Autism are advocated for and protected is through public school services. When an individual with Autism is enrolled in school, they are assigned a teacher who has been trained to work with people who have intellectual disabilities and many special services are given in the form of transportation, meal and playground times, and specialized education programs. A lot of schools also have a buddy program, which allows general ed kids who volunteer to come in and provide a source of normal communication and connection to their autistic peers. There are also many services that work independently of school districts and with individuals of all ages to provide behavioral services. These operations train their employees in applied behavior analysis, which is a tool used to correct unproductive and/or harmful behaviors and helps these individuals learn how to interact and communicate with the world in a more productive way. Even with these services in place, individuals with Autism have a much harder time relating to their peers and understanding how to interact with others, so there is still quite a bit to be done to ensure that this community is accepted and understood. In my opinion, we could be doing more to integrate this community into others and hold more events reaching out to these people and informing the general population about Autism and intellectual disorders in general. I have gathered from this observation that this community is an excellent starting place, a place of welcoming and understanding, and helps these individuals connect and feel understood by each other, but also that we need to do more to understand and connect with them, maybe by welcoming them into our own communities.

 

Works Cited

A. (2020, October 10). Just emerged from the primordial ooze. Retrieved October 10, 2020, from https://www.autismforums.com/threads/just-emerged-from-the-primordial-ooze.34451/

Autism Spectrum Disorder. (2020, September 29).  Retrieved October 10, 2020, from https://medlineplus.gov/autismspectrumdisorder.html 

What is the Americans with Disabilities Act (ADA)? (2020, October 13). Retrieved October 10, 2020, from https://adata.org/learn-about-ada