Autistic and NeuroDivergent People’s Struggles Are Invisible Pt 1: Masking & Sensory Issues

This video was shot and released to Patreon Subscribers, Facebook Supporters, and YouTube channel members on June 30, 2021, as a thanks for the support you give my blog. The video’s public release is set for August 4, 2021.

This is an Autism and NeuroDiversity blog based on personal experience. Please remember – this is only ONE Autistic perspective. We are all unique.

Transcript:

Hey Humans, Lyric here, and this week, I’m going to talk about something that people often forget, online, when they see Autistic People sharing their experiences…

 That many of the struggles Autistic People have are, in fact, invisible because they have to do with how we process information and interact with the world.

These things are happening behind the scenes, so if you’re curious, and would like to learn more, please stay tuned.

Something different for my video this time, I have got bullet points, instead of a solid script, so we’ll see how this goes.

I’m hoping to preserve some of my natural NeuroDivergent tendencies, and communication style by not fully scripting out this video, but I am very aware that if I were to off the cuff with this and do something completely unprepared, the order would not be comprehensible.

 Let’s see how this goes and let me know if you like this, a slightly more relaxed format video, as we dive in.

 First, we’re going to talk about Autistic Masking, and this is largely one of the reasons, a lot of things around being Autistic are invisible. In addition to the fact that we’re talking about processing differences, and how we experience the world, which is also invisible.

Autistic masking is when an Autistic Person, or a NeuroDivergent Person may mask, or hide, their Autistic or NeuroDivergent traits.

 They may do this with, or without, realizing they’re even doing it.

Before I knew I was Autistic, I was masking and I didn’t even know that’s what I was doing.

 Autistic people, often, we mask because we feel unsafe and we are trying to blend in and be invisible and not be noticed because a lot of us… 

I will speak from my personal experience.  I was bullied and picked on a lot for things I did.

People would call me horrible names: spazz, the R word, twitchy witchy, all kinds of really just ugly things.

People would tell me I was overreacting to things a lot. People would tell me I was being too fill in the blank. 

 So I learned to hide, and restrain myself, very greatly, because I became very aware that the way I would act, naturally, was mocked by people around me or scolded.

When I was young and, tried to speak up for my needs, for example in elementary school, when I started to get headaches, when I went to a new school.

Every day, in the classroom, I would get a headache and I would get sent to the nurse, but the nurse told me to stop coming to the nurse, because the nurse assumed that I was trying to get out of class, and told me I had to learn to stay in class like everyone else.

 So I just assumed everyone else was as uncomfortable as I was and the expectation was, regardless as if you had headache, migraines or extreme pain, or not, you were required to stay in class anyway, and suck it up and deal with it.

The consequences of that being, that for 29 years, I had regular migraines, triggered by fluorescent lighting, because the nurse, maybe unintentionally, I don’t know, or intentionally- I can’t say. This was a lot of years ago… gas lit me and sent me back, dismissing my experience and I never got help for the migraines.

 When I found out I was Autistic at 29, I learned about sensory processing disorder, learned about my sensory triggers, and very rarely do I now have migraines, but that’s 29 years of my life with chronic migraines, that might not have had to happen but it was an invisible struggle.

I was going to school and work, and doing life going about life with a migraine, trying to act like everything is okay, until it eventually gets to a point where the migraine takes you out, and you can’t do anything and you have to just go to bed.

Yeah, that was my life.

 That brings us to another invisible struggle, that a lot of Autistic People struggle with, and I struggled with, and still will probably always struggle with, because of the way the modern world is set up and that sensory issues.

Sensory issues… hats are one of my favorites and three tools, also not a bad fashion accessory, if I might say so myself… they are, for those of you who are new, differences in the way many NeuroDivergent People experience the world.

The lights for me are very bright, more bright than they are for other people, and for me, trigger neurological problems, such as migraines, and can even trigger seizures, and other things.

 That is the very intense lighting sensitivity. It is probably my worst sensitivity, and even really harsh glares in sunlight can trigger this.

A lot of times, for me, it’s fluorescent light. I spent a lot of my life, as a young person, elementary, middle, high school, very sick from overexposure to sensory triggers, because I didn’t understand that’s what was making me sick, and we didn’t know I was Autistic, and the doctor wasn’t looking my neurology from that perspective.

We were only looking at the outward behaviors and symptoms, and we couldn’t get to the cause, because we didn’t know I was NeuroDivergent, or that I had sensory issues.

Figuring this out, made a very large positive impact on my life.  Because I didn’t know I had sensory issues, for a very long time, I learned to hide my pain and discomfort around sensory situations.

For example, covering your ears when there is a loud noise, people will often make fun of you for that, so you learn to just tense your body up, and smile, and act like everything’s great, even when you’re in pain… or I just learned to  take a jacket everywhere I go, if I have to go inside.

Even in the middle of summer, when it’s triple digit heat outside here in Texas, I take a jacket or sweater, because I can’t stand normal room temperatures that most people  can deal with, or find pleasant.

I also struggle to hear words correctly and sort out sounds.

Part of that sensory processing can be a difference in processing pain.

NeuroDivergent people can be more sensitive,, or less sensitive to pain then is considered what is average in the general population.

I say that I am grateful I have a higher pain tolerance than a lot of people I know. Although, this is not always good because sometimes I will injure myself.

Like I’ve broken bones, and just not gone to the doctor, because I don’t feel the pain the way other people would, and somebody would have been at a doctor a long time ago, and I’m like, “eah”.

I had a tooth that got very infected, and it was dangerous, because I didn’t go to the doctor until  it was really at a bad point, because I was just like, “ah, pain, this is my normal”.

Some of us, myself included, will also experience chronic pain. I have hypermobility.

 Autistic People, also are likely to have something called EDS, Ehlers Danlos syndrome, not all of us, but some of us. I was supposed to get tested for this and I haven’t gone, but I do have a hypermobility diagnosis, and I have known I was hyper mobile since I was 11, when I did physical therapy for my poor knee, that is still my bad knee, but it’s much better than it could have been without all the exercise and strength building around it.

 If Autistic People have EDS, hyper-mobility, or other co-occuring conditions, that can cause chronic pain: my knees, my back, my shoulder and my hands.

Where did you think I was going with that one?

It did cross my mind, I will admit it.

But some of us also have chronic pain.

If you live with chronic pain, you can become pretty good at hiding pain or discomfort, because that just becomes your normal, and you take for granted what it’s like to not be in pain. 

I have been in chronic pain since I was 11. Bad knee at 11,  bad back around 17, my hand, because I injured it and never went to the doctor around 18 or 19.

What did I say? And my hand, my thing, when I said my back, my shoulder, my hand.

I was like, “why did I say those things specifically?”  Then it just turned into a rhyme.   Specifically, those were specific things in my head, I was like, “oh, these things”, but I’ve also injured my neck.

Neck pops. Oh, did you hear that on the microphone?

I wonder if that picked up.

Crunch, crunch, snap, crackle, pop, wake up, call to your joints.

Dangers of me not scripting the video: it has gotten rambly, and  my 10 minute video is now halfway through, and we’re past 10 minutes.

That means this is now going to be a two-part video series. Thank you for watching part one.

If you would like to see part two, please subscribe and turn on notifications, so you don’t miss when this video comes out next week.

Unless, you want to subscribe on Patreon, where videos generally come out about a month early.

That is just how I thank those Patreon members for helping me to create high quality content, on a regular basis, the way I’ve been doing recently, and now with closed captioning and transcriptions at NeuroDivergent Rebel dot com, thanks to viewers like you.

I really couldn’t do it without you.

 Huge thank you to everyone who comments shares, gives video suggestions, ideas, and feedback, and just for being a part of this community, and interacting with each other.

I’m really grateful for each and every one of you. Thank you so much for being here.

I will see you next week, with part two of this video, that  I’m actually going to shoot right now. Then I’m going to see ifI can edit both of these today.

The transcription is what takes the most time, even with the software. I can shoot this video in less than a half hour.

It’s going to take me several hours, even with the transcription software to transcribe it and close gaps in it, because of my own audio processing disability. 

Imagine how bad, and impossible it would be, without the software.  That’s why I have to keep these videos short, so I’m going to go, so I have less to transcribe.

I am so grateful. I will see you later. Bye humans!

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Help me get the word out!!! – If you like what I do, and would like more, please consider subscribing on Patreon. This blog is made possible by support from readers like YOU!  (Sharing my content is also, equally helpful!)

With gratitude,

Lyric

2 thoughts on “Autistic and NeuroDivergent People’s Struggles Are Invisible Pt 1: Masking & Sensory Issues

  1. Just found your blog. This was all really relatable, especially the sensory processing issues with temperatures and light sensitivity. I also went undiagnosed as a child. Only now in my 30s has it been suggested to me that I’m autistic. Explains so much. Thank you for making this kind of content.

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