My Story- The Other Side of Autism

In my last post, I described the social situations that led up to my autism diagnosis. This post will focus more on sensory differences, repetitive movements, and restricted interests.

“That’s not normal.” “Normal people don’t do that.” “Don’t be seen.” “Stop.” “Someone is looking.” “Disappear.” “Be like them.”

These thoughts and more, have flooded my mind over and over again for as long as I can remember. I have forced myself to fit in, stopped myself from doing things that seem strange to others, and carefully analyzed the world for signs of acceptance.

I feel like I don’t know myself. I don’t know what I like to do or what makes me happy. It hasn’t mattered up until this point. It wasn’t about me; it was about everyone else. Flapping is not acceptable; having a meltdown is not acceptable; refusing to try new things is not acceptable; reacting to loud noises is not acceptable; escaping uncomfortable situations is not acceptable; enjoying or seeking out certain sensory experiences is not acceptable. Acceptable- that has been the thorn of my existence, triggering the ultimate thought, “I am not acceptable.”

How did it come to this? How did I get to the point where I was afraid to do anything for fear of doing something wrong? How did I become so scared of being different that I felt like it would be better for everyone if I wasn’t alive at all? How did autism collide with depression and suicidal thoughts, resulting in fear, hiding, cowering behind a cover of normalcy?

Things have gotten better. Fear isn’t as strong as it once was. Suicidal thoughts aren’t as prevalent. But, I have yet to accept my differences.

There are so many groups, websites, and people promoting autism acceptance. They say to be yourself, to flap, to sensory stimulate, to do what comes naturally. I don’t believe it. As much as I try to believe that autism acceptance is possible, my rational brain rejects the idea. How could people possibly accept what they have told me for so long to hide? I am not strong enough to endure the criticism of allowing myself to appear autistic.

I have not done what I could have or possibly should have done to promote this blog. I convince myself that it is because I simply don’t have the time, but the truth is that a large, well-known blog attracts controversy. People will do anything they can to destroy any hope that threatens their perception of perfection. I have experienced this in my life and it has brought me into hiding. I hide my sensory, behavioral, kinetic differences in order to preserve them from being attacked, to preserve me from letting them die.

So I do not flap in public, but I flap openly in my room. I am also starting to do so more at work and church and school when I happen to find myself alone and the chances of being seen are relatively low. I do not rock in public, but I find a quiet, solitary place to release and calm down. I do not chew on pens or furiously scratch ink onto notebooks; instead I calmly draw little pictures, take pens apart and reassemble them, and silently trace little designs with my fingers. I do not twist my hands or do complex body movements to relieve tension; instead I crack my fingers, stretch, shift in my chair, and attempt to distract myself.

Is there such a thing as being free or is freedom learning to live within the structural, social, cultural, religious, and legal constructs of the world? I don’t know if this is freedom, coping, or hiding. I don’t know if this is ideal, disheartening, or simply necessary. I don’t know if it makes me happy or sad, frustrated or satisfied, anxious or relieved. I do know that it’s not likely to change soon.

I am not likely to suddenly start flapping in public or allowing my textural interests to show or talking about my specific topical interests for more than a few seconds or allowing my body to do complex twisting movements. I am not likely to allow myself to show that I am autistic. But, the thoughts of hiding my differences and forcing normalcy are becoming kinder. I am becoming kinder with myself, more understanding of my weaknesses, and more accepting of my sensory needs outside of the public view.

SensoryBlogHopNew

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

Want to join in on next month’s Sensory Blog Hop? Click here!

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Sensory Savers

I carry a set of earplugs with me. I keep a pair in my car and in all my emergency kits.

I hate earplugs, but… they help me blend in while getting me through the most difficult circumstances. I have used earplugs in class when a video was too loud or if just the class in general was too loud. I have used them to fall asleep when the world just seemed louder than normal. I use them less now than I used to, but they are my coping skill when I can’t handle things.

I feel like my life is a series of trying to blend in by finding ways to do normal things abnormally. Not that anything I do is really abnormal, it’s just thinking outside of the box.

Recently I discussed with my therapist ways to address my sensory needs to make life more manageable. I guess I tend to neglect my needs in favor of appearing normal. So I haven’t taken time to find sensory stimuli to reduce stress in my life.

Hearing is one thing that has been pretty easy to find ways to deal with it. I can easily slip a pair of earplugs in and significantly reduce the pain I feel from excruciatingly loud sounds. I still feel nearly constant pain from all the sounds and sensory input surrounding me every day, but I’m going to start looking into more ways to fulfill my sensory needs.

Up until now I have learned to find peace within myself when everything becomes distressing. But it’s nice to know that it doesn’t have to be that hard anymore. It’s okay to deal with things differently and use things like earplugs and textures and smooth surfaces to help me feel better.

SensoryBlogHopNew

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

Want to join in on next month’s Sensory Blog Hop? Click here!

How I Communicate

I write a lot of letters. Nowadays, I try to write at least one letter per week. I used to feel foolish for my letter writing, and so there are many letters that I never gave to the person I wrote them for. Now, I feel foolish for never giving those letters.

I can’t express to someone how I appreciate them through speaking. I’ve tried it before and it was okay, but it just couldn’t convey the same meaning. Writing letters is my way of saying I love you. Writing letters is my way of saying thank you. It’s how I can explain myself and how I communicate best.

I can’t believe I ever thought that was wrong. I can’t believe I degraded myself for how I communicated and expressed myself. I can’t believe I forced myself into silence because I was afraid of being different.

I wish I could go back and hug my former self and tell me that it’s okay to write letters. I wish I could put my arm around the shoulder of that quiet girl who was so afraid of being hurt and tell her that letters make a difference. I wish I could let her know that letters would be one of the few ways she could make and keep friends.

I don’t know how you communicate or what works for you, but whatever it is, don’t stop. Don’t stay quiet because of fear. Don’t force yourself to not do something that’s natural because you’re afraid of being different. It might just make you a lot lonelier for a lot longer than you need to be.

High Functioning

What does that really mean?

Honestly, for me, it means that I’m really good at not doing what I want to do.

It means that when I want to be happy, I hold it in. And when I want to break down, I hold it in. And when I want to rock back and forth or flap or touch walls as I walk by or yell at people or jump up and down, I don’t.

So… don’t tell me I don’t have autism because I hold it in. Don’t tell me I don’t have problems because you don’t see me going crazy in the corner. I’m still going crazy; I’m just doing it where you can’t see it.

Yes, I’m high functioning… but that may not mean what you think it means…

SensoryBlogHopNew

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo! Want to join in on next month’s Sensory Blog Hop? Click here!


 

I need more time

One thing that is very hard for me to deal with is when people discount my feelings. I often get upset or annoyed at things that really don’t matter. I know that they don’t matter and I try not to get annoyed by them, but I do. Generally when this happens I am alone or can go somewhere where I can be alone. However, sometimes people notice when I get upset about something. This is where problems can arise for me.

I know that the things I get upset about are inconsequential and in general there is no reason to get upset about these things. They are things that are easily solved and have no bearing on the rest of my life. The problem is that I can’t control what I get upset at. It just happens. However, I do have some control over what I choose to do after I get upset. And what I do usually has a lot to do with what else happens surrounding the event.

When I am alone I can generally calm myself down. I can reason within myself about the validity of my reaction and think of an appropriate way to handle the situation. When I’m not alone the reaction of others to me getting annoyed or upset can sometimes interfere with me being able to immediately think things through and proceed to calm myself down.

When people discount my feelings by asking why I am getting upset at something so trivial or by telling me to calm down because whatever I’m upset at isn’t important, my feelings take over me. Instead of stepping back and analyzing the situation and allowing my reason to trump my emotional reaction, my emotions take control and carry me to a less ideal end. Instead of calming down and letting the situation go, I get more and more upset until I either outburst or find an escape.

I think my autism is probably most apparent in these times. I usually have the time to think about my reactions to things and can respond appropriately, but in these times I know I don’t respond appropriately. People say “use your words,” but how can you come up with words when the only thing inside you is pure emotion? How can you turn energy into sentences? Especially when you aren’t given the time you need to do that?

So, yes, I can use my words. But no, I probably can’t do it when you want me to. I need a little more time.