CN: extensive description of the experience of autism including ableist treatment, triggers, and sensory overload. Mention of ableist term.
Autism advocacy as a branch of activism is something I've learned a huge amount about just in the last few years, and one of the repeating problems the community faces has been how any "advice" on interacting with autistic people that's published in large scale media sources, is exclusively written by neurotypical or allistic (the opposite of autistic) people. Having grown my circle of openly autistic friends in these last few years, it was very quickly clear how wrong these guidelines are about how autistic people work or how to treat them with the normal respect you'd treat another human. Autistic people themselves should be considered their own experts. I'm glad that I get to contribute to establishing this new norm with Anna's guest post today.
I was diagnosed with autism at age five. Growing up autistic wasn’t always easy, as many people didn’t understand me. People either didn’t understand what autism was or they didn’t take me seriously. Sometimes I felt like people thought autism was something that would go away over time. Other times people made me feel really dumb. Sometimes these situations would lead to conflicts with people who I thought were my friends. When a friend calls you boring for not wanting to hang out or pressures you into doing things you don’t want in an attempt to pull you out of your comfort zone, you’ll quickly start to feel like you’re being selfish for not wanting to do what they want to do.
The vast majority of these problems boiled down to the fact that my brain works in a different way than those of my non-autistic friends. They simply didn't understand that I needed something different from what they were used to. Even when I would explain to them what I needed, they still couldn’t always get the gist of why I needed it, because they had no idea what it was like for me. The feeling of not being understood and, in extreme cases, people not believing you when you tell them what you need, was very lonely. It made me wonder if maybe it was me that was the problem, maybe I was overreacting. I now know I wasn’t, but it does feel that way at times.
If you have someone in your social circle that is autistic, there might be a chance that they’re not always as eager to hang out. Or maybe they do want to hang out but it seems like they always want to leave early. Regardless, having an autistic friend can raise some questions. You may wonder if you need to do something to accommodate their needs, or if you should refrain from doing or saying certain things. These are normal questions to have but not always the easiest to get answered. In this post, I’ll discuss what challenges your autistic friend is likely facing and what you can do to make hanging out fun and accessible for both of you.
Why Being Social Wears Us Out: Too Much Input
For many autistics, being social is a tiring thing. It can be difficult for us to hang out for many hours or attend a multi-day event. It doesn’t mean we don’t enjoy it, though. On the contrary, many of us love to be included in things, we just don’t always have the energy to be social.
One of the reasons why socializing is tiring is that we’re prone to getting a sensory overload. Neurotypicals (non-autistics) have some sort of mechanism in their brain that filters out all the unnecessary sensory input. Autistic people either don’t have this filter or it malfunctions which means that our brain processes everything it sees, hears, smells, tastes, and feels. You can compare it to a computer trying to save more files than its storage can hold. At some point the memory becomes full and the computer will get really slow. This is a sensory overload.
Sensory overloads can get really rough and sometimes even painful. Everything feels like it’s too much. Some people will start rocking back and forth or show another form of stimming (learn what stimming is in this video). Others will become mute or unresponsive. Some people zone out completely or will try and hide somewhere. It’s different for everyone but it’s never fun.
When an autistic person is at a crowded social event, or even just in a room with a few people, the sensory input will quickly build up, faster than it would for someone who is not autistic. Processing so much information is tiring, even when there’s no overload. This processing problem is why attending a social event is draining for us.
How You Can Help Us During Overload
The first rule of the thumb for neurotypicals for any situation with your autistic friend is to ask us what we need. Don’t make assumptions based on what other autistics have told you they need or what you’ve heard about autism in the media. Every person with autism is different and has different qualities and different struggles. Always ask if you’re unsure.
The second thing you can do for us is to listen to us when we tell you what we need and then support us in getting that need met to the best of your ability. If your friend asks if they can sit in the guest room for a while by themselves to take a break from all the sensory input, don’t question it. If they ask you if it’s okay that they put on their headphones for a while to listen to music without speaking, let them do so. They’re (most likely) not doing these things because they don’t want to hang out with you. They’re trying to give their brain a little break from processing input so that they can continue to hang out a little longer.
If they do tell you they’d like to go home, don’t try and convince them to stay. You’re allowed to be disappointed when they leave earlier than expected but if you care about them, you’ll practice understanding that it’s for their own good that they leave.
Third, most of us would appreciate it if you keep an eye on us. If you notice your autistic friend zoning out or becoming less talkative, ask if they are okay and ask what you can do. Many autistics will be happy to explain to you what they need and will probably feel relieved that you’re genuinely interested in understanding them better. Do keep in mind that in some cases what we need is to be alone. We also might not have the energy to talk at all. In the case of the former, respect our wishes and just check in with us now and then. In the case of the latter, don’t force us to talk to you. A nod or a shake of the head can also give you information on what we need.
The Exhaustive Practice of Masking
Being social also wears us out because many of us struggle with our social skills. When we’re in a room full of people, we’re constantly aware of our own behavior and constantly adjusting it to mirror the behavior of others, just so we can fit in. This is called masking. You can imagine that this can be quite tiring.
To save energy and avoid the stress of constant assessment and decision making, a lot of us work with so-called “scripts”. For example, when I have a friend over in my house I know I greet them with a hug, tell them they can sit, and ask them if they want something to drink. This is not automatic behavior. This is something I learned from observing and have to think about every time. That doesn’t mean I don’t enjoy the hug or find it a hassle to get my friend a drink. It just means that it’s something I have to remember every time. This practice also takes up energy.
How You Can Make Socializing Easier for Us
The most important adjustment you can make is simple: allow us to be ourselves around you. Give us the space and freedom to execute our routines, show all of our quirks, and in time, we might get comfortable enough to take our masks off. Accept us for who we are and don’t scold us for responding to things differently than what you’re used to, such as not making eye contact, laughing at the wrong time, misinterpreting situations, and taking sarcasm literally.
Having Fun Together
Now that you understand us a little better, you’re probably wondering how you can make a social gathering fun for the both of us. First of all, I want you to know that many of us enjoy hanging out with others despite our difficulties. We just need to take more precautions to ensure we’re able to have fun.
By getting to know your friend’s wants and needs you’ll also get to know what they like and don’t like. If you know they don’t like crowded places, don’t take them shopping in a capital city. But if you know they’re in love with nature, suggest having a picnic at the park or suggest a trip to a botanical garden.
There's a common belief that because of sensory overloads, autistic people would rather not go places they're not familiar with when in reality, you can go all sorts of places with your autistic friend. Often they’ll be happy to go on a day trip. It’s just a matter of good communication between both parties to ensure the both of you have fun. Also, remember that not everything has to be your idea. If the two of you want to hang out, ask your friend what they’d like to do. Autistics can think for themselves and don’t want to feel babied or treated differently. We just want to be accepted and understood. So actually it’s exactly like friendships with non-autistic people. Communication and mutual understanding is key.
Things Worth Remembering
The main thing that you should remember in engaging with your autistic friends is that most autistics are just trying to get their basic needs met. They do not decline your invitations to social gatherings because they don’t like you. They won’t request to stop speaking for a while because they find you annoying. They’re displaying this seemingly anti-social behavior because they’re either not in the right state of mind to be social or because they’re trying to make the most out of a hangout. And while some requests they have may seem odd to you or maybe even inappropriate, trust that we know what we need.
If you’re truly concerned about whether your autistic friend is doing something for their own good or because they hold something against you, just talk to them about it. If you find something they say or do truly rude or inappropriate, discuss it with them. Making assumptions about why they say what they say or do what they do only makes matters worse for both parties.
Fortunately, I left my inconsiderate “friends” behind and I now have a wonderful group of compassionate friends who accept me for who I am and give me time and space when I need it. This acceptance is very important to me because this makes me feel safe and comfortable around my friends. I don’t have to worry that they’re judging me for leaving a party after an hour, or putting on headphones when we’re on a day trip. They understand that I am different and they don’t mind one bit.
Autistic people make wonderful and very loyal friends. We’re open, honest, down to earth, and caring. And if you allow us to be ourselves, we’ll do the same for you.
About the guest blogger: Anna Everts is an autistic and non-binary writer from the Netherlands. They write blogs about autism and mental health, but they also write poetry and comics. When they aren’t writing they like to paint, go for a walk or play with their hamsters, Jupiter and Sock. You can find more of their work on peculiarplanets.com