Living with autism: finding community and support on social media
Ilustration by Haoran Li. Our nonprofit generates funding in multiple ways, including through affiliate linking. When you purchase something through an affiliate link on this site, the price will be the same for you as always, but we may receive a small percentage of the cost.
by Ian Donley
Social media is helping to expand resources for those on the autism spectrum
I’m on the autism spectrum, and, without social media, I wouldn’t have come to embrace my identity. With the rise of sociopolitical discourse on social media, marginalized communities have an opportunity to connect with one another and share lived experiences. Autism is no different. Over the last couple of decades, autism has been brought to the forefront by the medical industry. A lot of the conversation has been rooted in ableism, and many doctors are insistent on “finding a cure” for autism.
While this may stem from good intentions, the rhetoric used by the medical industry has alluded to erasing us from the public domain. I began researching how autistic people can use social media as a tool for helping themselves, and this is what people have to say to the medical industry.
Haoran Li
We can learn about ourselves
For about a year now, I’ve begun breaking down the conditioning placed on me growing up as an autistic person. For me, finding a space where I can relate to people with my experiences has been a blessing. Morgan Foley (@autismidentity on Instagram) received her autism diagnosis a year and a half ago, and can relate to this. “I decided to create an Instagram page to talk about my autism so that if anyone was curious, they could go look and find out more and educate themselves rather than gossip.”
We hate feeling like we’re second-class citizens in our communities. Having online communities gives us a space to feel validated as complete humans.
It also gives us room to break down what we’ve been taught by the medical industry. Foley, like many of us on the spectrum, had to break down internalized ableism in herself, which has made her more open in her activism. “I constantly have thoughts like ‘Oh, I don’t need this accommodation. I’m not autistic enough to need that.’ But needing accommodations is not a bad thing at all.” Society views needing helping as a sign of defeat, when, in reality, it’s a saving grace.
Haoran Li
Social media gives us a chance to feel self-empowered
Growing up, my autism diagnosis wasn’t talked about in my household, nor the environment I grew up in. I was conditioned to view being autistic as unimportant, like my favorite color being red, or my zodiac sign being Saggitarius. I didn’t have any autistic or other neurodivergent friends as a kid. Despite knowing I was autistic since I was 13, I didn’t dive into what that really meant for me. I didn’t feel like it was a big deal. It wasn’t until after college when I realized that being autistic was a huge part of my overall being.
For Foley, it was essential. “I think it is so important to have friends or be surrounded by people whose brains work like yours.” When she first was diagnosed, she was able to reach out to a classmate of hers she knew was on the spectrum, and he was able to open her eyes to what her diagnosis meant for her. “He gave me so many good tips and answered all my questions. It was like he was introducing me to the world of autism.”
Giving us an opportunity to find people who relate to us is an act of empowerment. According to Psych Central, a study was conducted where it showed higher quality friendships between autistic people stemmed through social media. There’s strength in numbers. Online communities give us that.
Haoran Li
We can fight for our needs via social media
Many autistic people have taken to social media to advocate for their needs. One of the most popular trends for autistic people is #actuallyautistic, a hashtag meant to encourage discourse about autism through the perspectives of autistic people rather than solely depend on the parents of autistic children, which has historically dominated the conversation. Dr. Jennifer Elizabeth Brunton and Jenna Gensic are two neurodivergent authors of the book The #ActuallyAutistic Guide to Advocacy.
Haoran Li
“Here’s a universal issue: generalizing. Parents, teachers, helpers, therapists: make sure you are really addressing the person in front of you! We are all different,” Dr. Brunton said to Learn From Autistic People. I was raised being told I was just depressed or too emotional and I needed to grow up. This rhetoric only makes autistic people less likely to speak out. Following the hashtags gives us room to speak up when we are surrounded by people who won’t let us.
Although there’s much work to be done, I am hopeful that there will be a day where we, as autistic people, are able to build our community in a more tolerant world. The work must start at the top, and make its way down.