The following is from an anonymous friend who wrote this in response to some struggles i’ve been having for awhile now. I am posting this here, for educational purposes only, to help readers gain knowledge and understanding of what being a real friend, support person, etc., to an autistic person is….how to really be here for us, how to show UP for us, how to really have our backs.
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I hope this will help any of you reading this who also struggles with friendships, and maintaining friendships because a non-autistic friend does not understand. I still to this day struggle in my relationships with all people, both autistic and non-autistic, because of so many sensory issues and a lifetime of trauma i sadly, have yet to heal from.
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It doesn’t make us bad people. It’s because so many people today still don’t get it that autism and autistic people are not a behavior issue to be scolded and fixed and cured. Autism is a real and valid disability.
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I urge you to read this in a quiet room, with your entire attention, and then pass this on widely, because on behalf of myself, an Autistic adult, all of my fellow autistic friends, and all autistics in this world, it is time for the non-autistic world to stop seeing us as the tragedies and burdens and monsters that we are not.
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Hey *******,
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I am an anonymous friend of Melissa’s and wanted to reach out to talk to you. She says that you are wanting to learn more about autism and how to support an autistic person like Melissa.
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Like Melissa, I am also autistic and I think I can help you to understand a little bit more if you are willing to listen.
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First, I’d like to say that as her friend, it’s really important to listen to Melissa even if you don’t understand why she might have certain reactions or responses. The reason for the way an autistic person is acting is not something that can be easily explained to people who do not experience the world like we do. So, when an autistic person is reacting or behaving differently than you would, remember that’s because you are not experiencing the same things in the same way as we are. I will talk a little more about this but just wanted to say first that there might be times when you will never understand why Melissa wants things a certain way or does things a certain way, but that doesn’t really matter because she still gets the final say in her life and in her home. Melissa did say that you wanted to learn more and thinks that you are a person who really wants to help support her in a respectful way, and she wanted to try to help you understand her better. To me, that says that she thinks highly of you to devote the energy and time into helping you to understand, so I want to help her make that happen!
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Autistic people experience the world differently in many ways. The primary ways that we are different from non autistic people are in the areas of communication, sensory processing and movement.
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Communication:
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In general, autistic people like Melissa and I might struggle a lot with what is called expressive language. Even autistics who talk a lot tend to have a hard time with identifying and expressing emotions. This is called alexithymia. It means that some emotions are hard for us to name when we are having them and there is a disconnect between the things we are feeling and how it affects our bodies and sometimes how that looks to other people. It makes it very hard to tell other people what we are feeling when we can’t figure it out ourselves. But this is not a person being difficult or manipulative just to upset you, this is how our brains are wired. Some ways that you might see this when interacting with Melissa is when she might seem to get mad out of nowhere. Well, it’s not out of nowhere. I am often accused of doing this when in reality there are a million little things that have been upsetting or distressing me and I don’t realize and name it in real time and can’t express it to people around me. Autistic people also tend to be very blunt and communicate in facts. Some people see this as rude, but to an autistic person, not saying what you mean is pretty rude too. For example, I don’t think Melissa would ever bullshit anyone and pretend something did not bother her when it did. This is something that non-autistic people do and it’s baffling. So, as you can see, the way you communicate as a non-autistic person can be just as confusing to us as our ways of communicating are to you.
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Alexithymia combined with the sensory regulation issues that all autistic people experience can be quite upsetting and overwhelming. It’s important to note that what you are seeing and experiencing when an autistic person is struggling in this way is not even a fraction of what they are feeling internally.
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As Melissa’s friend of many years I know that she sometimes uses images she creates on her computer, writing or even pictures she shares on Facebook to express how she is feeling sometimes. This is something that a lot of autistic people find easier than talking. So, Melissa communicates just fine in autistic ways, but what she needs from the non-autistic people around her is to know that there will sometimes be conflicts in communication since we have such different styles and ways of expressing things than non-autistic people. The key is to respect each other’s way of communicating and interacting with each other.
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Sensory Processing
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Autistic people all process sensory input in vastly different ways than non-autistic people do. Some people are sensory defensive and some are sensory seeking. Some are both at the same time! I know that Melissa has a terrible time with the loud noises from the cars in her neighborhood. What might seem like an annoying sound to you is PAIN to her ears, and probably would be to mine too. Melissa can probably explain better what her particular sensory issues are, because not all autistic people are the same in that way. A lot of times, there is nothing that can be done about the sensory things that hurt us. Because a lot of that is up to other people….like the car shop people, who are clearly not interested in that kind of thing. So, that is something that Melissa has to deal with on an almost daily basis and causes her intense and overwhelming pain. Sometimes, we can make workarounds and accommodations like earplugs or headphones….but sometimes those create a whole other sensory hell for us too. I know that I can’t wear earplugs but I also can’t handle lots of noise. So, it can be a very hostile world to navigate at times.
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So, it’s important to understand that our experiences are probably 100% different from anything you have ever known, but that doesn’t make them less true or valid. Sometimes, when I am overwhelmed from too much sensory input I am told that I am “rude”. I don’t mean to be, and I do not want to hurt anyone’s feelings but in that moment, I am trying to lessen the pain I am feeling. So, when Melissa is overwhelmed from sensory issues this might cause a meltdown….and if you knew how much sensory pain she experienced daily that she DID NOT react to, you’d know why meltdowns happen. It’s usually the last straw when we melt down. We are not trying to be rude or cause a scene, but we are in pain and we are trying the best that we can in a world that is really pretty shitty to autistic brains.
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Imagine that I accidentally dropped a giant log on your foot and at the same time you were unable for whatever reason to tell me and I didn’t notice. Then I ignored the gestures and other ways you tried to communicate that to me. Not intentionally, but I just didn’t understand. You are dealing with this log, unable to move past it and it’s causing you so much pain that you eventually start to scream at me to get the damn log off your foot. I wasn’t TRYING to cause you pain, it was all an accident. And I wasn’t TRYING to ignore your pleas, I just didn’t realize or know any better. And when you finally screamed or had enough, I just get offended that you reacted to the pain. This is how it feels to be scolded for having a meltdown…..A meltdown is a bit like that…..it’s a reaction….it’s not an intentional act to upset another person.
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And I get that it can be scary for a non-autistic person. It’s scary for us when it happens to us too!
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When an autistic person melts down, the best thing you can do is to not put any more demands on the person. Don’t ask a bunch of questions or yell at us, scold us or tell us what to do. The best thing you can do is just be there, without judgment and to not hold it against us in the future. Meltdowns sometimes help us process things when we are at our limit….but they are not fun, they are embarrassing and we don’t enjoy them.—
Perhaps a good idea is to sit down with Melissa when she’s not upset or having a meltdown (or if she wants help, I can help her over the internet too!) and come up with a plan for what to do when this happens. I have a plan, my autistic loved one has a plan and they are helpful a lot of the time! The autistic person needs to be in charge of what happens and what the plan entails though.
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Movement
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Movement involves things like stimming and how we use our bodies to navigate the world. Most people stim. Autistic people do it in ways that might look a little more obvious to the outside world. It also involves the need for a LOT more downtime than most people realize.
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In addition to all that, I know that Melissa has experienced trauma and as someone who understands and gets complex post traumatic stress syndrome (CPTSD), I know how disabling trauma can be. Unfortunately, most autistic people are familiar with trauma. It’s not a part of being autistic as much as it’s a part of how people treat you for being different.—
One thing you have to understand about trauma is that it causes incredible anxiety. This can be seen in things like a need for routine and schedules, wanting things to be a certain way, not liking to have to deal with changes or spontaneous shifts in our routine, the need to control our environments and things around us. The trauma of repeated sensory overwhelm makes most autistic people need to have things very rigid and controlled because we don’t want to have to experience sensory overwhelm and meltdowns all the time.
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Melissa has experienced a lot of emotional trauma as well, and this also results in a lot of anxiety and the need for reassurance. This is something people can work on together….for example, I will ask the same question over and over again to make sure and it makes my non autistic loved one/friend irritated. So, we have a plan that I can ask four times and that’s it and if the answer changes after the four times for any reason, this person will tell me immediately. Then I know that the answer is the same without having to keep asking because they have not told me differently yet. I know that might sound strange to others….but it has helped to have that plan in place so much. But CPTSD will manifest in many ways and it changes a lot, so that is something that Melissa deals with as well. It’s a thing we need to work on, but it also is a thing that requires understanding from the people around us and it means that building trust in relationships is even more important for people like us.
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I know this is a lot, and I have a hard time getting to the point, sorry. But Melissa is very dear to me and I love her a lot. I want her to find the kind of support that she deserves and to be happy and to feel safe and secure in her home and community. That is what we all deserve. Please feel free to ask me any questions even if it takes me a minute to get back to you because I don’t have messenger on my phone. You can also text me at any time. and I will try to help as best as I can from far away.
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Thank you to my dear friend for writing this up for me.
