Accepting who I am

These past few months I have been virtually wandering around the web in search of inspiration and understanding. There have been a few places that I visited online such as the Thinking Person’s Guide to Autism and The Articulate Autistic. I haven’t had the opportunity to dive as deeply as I’d like but that’s because I’ve been exhausted lately and this particular post has been a WIP for like…weeks.

It’s been really hard trying to forgive myself and be accepting of who I am and the circumstances that I have been thrown into. It’s not easy and part of this acceptance is also removing those who would rather do me more harm than good, such as certain family members.

I’ve also been avoiding posting this just because the emotional toll was more than I had anticipated. Sitting down and actually being able to explain my thoughts have been both good and bad. Making a list just makes it even more real. Anyhow, this is an ever changing list as I come across more, get diagnosed, or can relate to it in some way. I borrowed a lot from the above blogs and you should check them out as well:

Thinking Person’s Guide to Autism and The Articulate Autistic

An ever evolving list of things I go through:

• Abnormal Movements – I have tics and pointing it out won’t make it stop, it usually makes it worse. There’s a reason why it’s happening and I’m doing the best I can, especially if I have to stay in an area that doesn’t consider my sensory issues.
• My body language and tone can appear odd – facial expressions, movements, and gestures may not match what I am saying. Paying attention to my words is your best bet, do not pay attention to my tone/body language.
• Don’t touch me without warning or permission. Yes, this includes giving me pills, giving me hugs, and helping me with basically anything. I often jump in response and it makes me uncomfortable and embarrassed. This in turn often leads to the person who touched me, without permission, to get mad at my response. I don’t find it funny, even tapping me on the shoulder does this – I don’t enjoy these type of “jokes”.
• Sensory discomforts which may seem minor to you, are rather overwhelming to me: Clothes tags, tight clothes, dry skin, even individual acne blemishes, humming machines, loud sounds, sunlight, temperature, strong scents, low-key flickering lights, fans, etc.
• Ignoring my sensory sensitivities or my perception of pain will cause me to avoid hanging out with you more and more.
• I hear things like air conditioners or fluorescent lights buzzing even though a non-autistic person can’t hear it. The repeated noise causes sensory overload and is a part of why some people have meltdowns “for no reason”. This is me – remember that. Just because you can tune it out, doesn’t mean I have the ability to do it.
• You eat strong-smelling foods or light scented candles, or you have fragrant flowers or plants—and even though you may not notice, mind, or you may even enjoy those smells. For me though, they are too much and can lead to headaches.
• I have fine and gross motor processing difficulties, don’t press me to hurry because it’s physically difficult for me—like putting on certain clothes, tying shoes, or brushing my teeth. This will just frustrate us both and possibly cause a fight plan ahead accordingly.
• Expecting me to be able to operate under high intensity conditions all the time just because I can put in the energy to do it sometimes, it doesn’t mean I’m aware of it, once all of my “spoons” are gone, they take a while to build back up. If I can’t build them back up, then meltdowns happen or worse can lead to burnout.
• Audio-processing is an issue for me. I process things slower and need time to respond or react. I don’t always respond to my name and hearing is difficult as well. This is why I have Closed Captions on whenever I try to watch TV or movies ask you to repeat yourself.
• Demanding that I quickly make choices between things or activities. Autistic people often need more processing time than non-autistic people and as a result we “freeze.”
• Making me spend too much time interacting with other people (especially non-autistic people) – interactions take more effort for me than they do for non-autistics, not less. (Note: many autistics are extroverts and thrive on socializing, but they still need down time when they need it!)
• Using language or symbols that aren’t specific, or have more than one meaning, so I, the autistic person becomes stressed rather than reassured as we either aren’t sure what you mean, or we thought you meant something else. This leads to a ton of miscommunication and hurt feelings. I am a very literal person.
• You didn’t do what you said you would do and you didn’t tell me you’d changed directions, or explain why.
• Asking an open-ended question like “what do you want to do today?” instead of asking concrete yes or no questions, or giving me clear choices between specified options.
• Getting mad, or telling me I am being rude, if I ask for clarification of imprecise requests or instructions ie: “I just need a few minutes,” or “clean up your room” without giving exact criteria or guidelines.
• Telling me I am being rude when I am either sharing factual information or being sincerely honest—or you think I am communicating with my tone of voice when I am communicating solely with my words. Listen to my words and my intent.
• You don’t believe that I am not able to understand my own tone of voice, and/or other people’s tone of voice.
• You don’t believe that I am not “hinting” with my body language and facial expressions and that they mean what they say, without subtext. You believe that if I just “tried harder” I could use body language and facial expressions like non-autistic people do, and do it successfully. I can’t.
• You insist that I make eye contact with you or other people, even though eye contact can be painful or overwhelming for autistic people, and indeed in many cultures is considered an act of aggression.
• You interrupt me when I am focused, switching tasks, transitions, and breaking focus is really hard for me.
• I can get stuck in a “bad loop,” don’t expect me to just “snap out of it” without considering specific ways to help. Autistic people get caught in “loops of concern.“
• You don’t give me a specific time for doing assignments, but you become upset when I don’t do it by X time at night, or after you get home from work.
• You tell me to use my words or to explain what I am thinking in words—many autistic people think in images, not words, and cannot possibly do what you are asking (Temple Grandin even wrote a book called Thinking In Pictures, and yet). I have processing issues, apraxia, situational mutism, alexithymia and I get overwhelmed.
• You ask me to name my feelings and get frustrated when I cannot, without considering that I have alexithymia (difficulty perceiving or describing our own emotions) like so many autistic people do.
• You treat my functional scripting, echolalia, typing as though they are not real communication, and belittle me for communicating in a way that makes the most sense to me.
• You expect me to have the same perceptions as you do and often tell me that my perceptions are “wrong,” even when autistic people often have synesthesia, meaning that we really can be smelling colors, or tasting numbers, or seeing music.
• I have no unstructured down time to relax and reset on my own terms (including atypical sleep needs/naps), and so I am in a state of constant stress, with no release.
• I can be overwhelmed by my own emotions and can’t express that distress any other way than through a meltdown or shutdown.
• Don’t treat my meltdowns, and any triggers, as though they are tantrums and voluntary, when they are in reality, involuntary and in many cases could be avoided.
• Someone might mistreat me, and I might not be able to tell anyone, because this person has power over me, or I might think they are my friend and I don’t want to lose them, or it’s because I have been conditioned to automatically comply with what other people tell me through ABA therapy or similar approaches.
• You make me try “just a bite,” of food, or tell me to stop being so “picky” — I have extreme sensory aversions to some foods and sometimes my brain just refuses. Don’t hide other food in my safe food without my knowledge, this makes the food taste different and worse, causes anxiety.
• You do not allow me to stim at all because you think it looks weird, or worry what other people may think—even if you know it makes me happy.
• You said something negative about me right in front of me, as though I wasn’t there.
• You volunteer me to do things without consulting me and get mad when I don’t do it. I only have so many ”spoons” and I value my time, like people should.
• You don’t accept me for who I am, and it will cause me to become depressed, anxious, and/or stressed.
• You know that I am autistic, yet you keep expecting me to “just do things“ like adapt to surprises without distress or interact socially like a non-autistic person, and you get upset with me when I am not able to. I thrive on routine and it can be hard to establish one when things aren’t discussed. This can eventually lead to burnout or a meltdown.
• You believe that you don’t have to change how you think or what you say or how you act—but the autistic person does. What ever happened to compromise? It’s a two way street.

Autistic people are consistently forced to be around people who do these things and/or allow it to happen. More people need to be aware that we are all built differently even though we all similarities.