Escape

I know I shouldn’t want to disappear when family visits, but I feel like I can’t handle it all right now. I feel like I’m on the verge of an autistic meltdown…

Everyone always thinks I do so well with all this… They just see me handling things. As much as I try to be strong, I sometimes wish people could see how hard it is.

I sometimes wish people could see that behind every walking quickly through a crowd is a need to get away from the noise, behind every “I’m tired” is a feeling of overwhelming anxiety that I’m trying to hold inside, behind every disappearance is a series of actions to try to get to an okay place again. I wish they knew how hard it is to try to act normal when everything in me is searching desperately for an escape. I wish they knew that as high functioning as I am, I can still be autistic.

Depression Doesn’t Mean I’m Not Happy

I want you to know that depression doesn’t keep me from being happy. I know that sounds like a contradiction, but when we remember that depression is simply a mental illness, or in other words, sickness that occurs in the mind, it makes sense.

I have an undiagnosed medical condition that has prevented me from being able to eat normally. Although it can be serious at times and it means my eating habits widely differ from those of most people, I am overall fairly healthy. The same is true with my mental illness. Although I may have long periods of darkness when I see little light or hope in life, I am overall happy.

In fact, I am one of the happiest people I know. Even though I think about suicide sometimes, even though I still struggle with desires for self injury, even though I sometimes cry for hours at a time for no real reason, I am incredibly, undeniably happy.

Here’s the thing, life is incredibly difficult. There are hard things, painful things, things that make you want to cry or scream or even stop living. But there are also beautiful things, amazing things, things that make you want to jump up and down and shout for joy and sing your heart out.

I feel those things, all of those things, the good and the bad. Because I have autism, I feel the world around me more than most. Because of depression, I feel emotions within me more than most. Because of my life experiences, I am more acquainted than most with pain and beauty, suffering and peace, destruction and ugliness.

So I struggle with the noise inside of me. I struggle to reconcile the explosions of joy that I feel with the craters of hopelessness that I experience. I struggle to make sense of this beautiful, crazy, heartbreaking world we live in.

But I want you to know that though the depression returns, though my suicidal thoughts may not disappear, though I wade through depths of darkness and hopelessness, I am happy. My depression does not leave me desolate. I still have joy. I still jump up and down flapping my arms because my body cannot contain the excitement of my happiness.

Yes, I may be depressed, but depression does not always equal sorrow. I am still happy.

Cleanliness and Sensory Meltdowns

I need cleanliness, at least in some form. Dirt, dust, small particles, grime, anything that feels grainy or slimy makes me feel uncomfortable. When I cook, I wash my hands every chance I get because I can’t stand the feeling of my hands being wet or dirty. The feel or sound of stepping on crumbs is literally painful. Even the smell of dust can cause sensory discomfort. I can’t relax when I see potential sensory problems. I know until I feel comfortable in my environment, I will be irritable and on edge.

Going back home was really hard for me. It probably seems like I’m always cleaning when I go visit my family. I sweep the house and wipe off the counters and do the dishes. The thing is, everyone expects me to participate and have fun, but all I feel is discomfort. I feel trapped by the dirtiness around me. Everything isn’t excessively dirty, but there are lots of little things that aren’t taken care of. I see dust everywhere and the floor needs to be swept and vacuumed before I can relax.

My family doesn’t understand it. They just see a jerk who gets upset with everyone for no reason. The truth is, I’m dying inside. I want to run away and breakdown in tears because I can’t handle the sensory pressures. It’s too much for me. I get anxious and feel like I’m suffocating. And I hate it. I hate myself. I hate that I yell at everyone and get overwhelmed. It also doesn’t help that I’m usually around more people and little kids so the sensory pressures are even more prevalent.

Perhaps the most interesting thing about all of this is I don’t actually have to touch anything for it to be uncomfortable. Just the thought of touching it makes me anxious. That’s not to say I keep everything in my life immaculate, but things are clean. I don’t leave anything where I could step on it or touch it and get dirty. I keep things organized and avoid allowing things to pile up.

I worry about things not being clean. I worry about being too busy to clean. I worry that I will become a monster, a jerk, unbearable because I can’t handle the pressure. One of my biggest fears is exploding at someone I love because I’m stressed about my environment. And it happens more often than I want to admit.
I wish I could explain that it’s not the person. I don’t get angry with people. I get frustrated by situations and take out that frustration on people.

I wish I could tell them I love them and I’m sorry for how I’m acting because I know it’s ridiculous. I can sometimes explain this later if I can find the words, but during the situation I am an uncontrollable mess. I hate how I’m acting and who I am but I don’t always see a way to escape. And if there’s no escape, the only way to cope is to blow up or break down.

And I hate it and I hate myself, which only makes it worse because I know I’m ridiculous but it’s hard not to be. It’s hard to keep the pain inside instead, to feel my insides churn, my skin feels like it’s holding in a million tiny armies trying to march out of me and the pressure builds in my head until I get a headache and collapse from the strain of it all.

This is what a sensory meltdown feels like. You try so hard to handle everything that causes you pain until you can’t take the pain anymore. You try to act normal and like things don’t bother you, but they build just under the surface until the pain and discomfort is too much. You try to escape if you can, to find a place to let go where you won’t hurt anyone, but you can’t always escape. Sometimes people won’t let you or you can’t get out of the store fast enough or there’s no where to go.

And then you become someone you hate and that everyone else probably hates too, and you break because it will never be enough. You can never hold it all in. But you try again the next time and the next time, and you just pray that you can keep the monster inside yourself away from everyone else.

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!

Holiday Meltdowns

I love the holidays and spending time with my family, but sometimes holidays bring out the worst in me. Holidays are the perfect storm for a sensory overload. There’s an extraordinary amount of people around, which means more noise, messiness, and general sensory experiences.

Everyday noise is usually manageable because I have learned to cope with it. Sometimes it becomes stressful and I need to be alone for a while, but usually I can handle life pretty well despite all the noise. During the holidays though, I feel stressed all the time. There’s noise and people and lights and something going on all the time. I feel like I’m in a tornado of constant motion and the noise swirls around me suffocating me, agitating like a blender grinding ice.

This constant commotion of emotions and sensory overload has led to some meltdowns this holiday season. Unfortunately, my family has been the recipient of my inability to handle everything. Luckily, I have been better this year than in the past. Still, I have been frustrated by my meltdowns or explosions of emotions.

I just hope that people are understanding. I hope that if you have a family member or friend with autism or sensory issues, that you understand that the holidays are harder for us. We try to participate and be kind and hold ourselves together, but if we break or snap, please understand that it’s not you. I promise we’re trying. I promise I’m trying. It’s just a lot to handle with so much going on.

Weighted Blankets

It’s amazing what a few extra blankets can do. In the summer, I usually sleep with at least 3 blankets. Two comforters and one soft blanket. When I am not feeling well or it’s a little colder, I can sleep with up to 10 blankets.

It wasn’t until recently that I realized it is not the heat, but the weight that makes the difference. I do get cold more easily than most, but the reason I need extra blankets to help me fall asleep is the weight.

Sleeping with enough blankets that they press upon you is like being hugged all night long. Some people think that people with autism don’t like hugs, but the truth is most of us probably do like hugs. We just need to expect them and be prepared for them. If we are not ready for the hug, it can feel more like abuse than a gesture of love. It has gotten better for me over the years, but before if someone hugged me unexpectedly, it felt like it would leave bruises from the force of it. However, if I expected it, it was the most amazing feeling in the world. It is like a relief from the sensory overload I experience all the time.

I don’t get nearly enough hugs, but I am very grateful for the ones I do get. I am also grateful for blankets that feel like hugs and help reduce the sensory stress so I can sleep at night.

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!

My Story- Autism

It is difficult to tell my story with autism because I’m not exactly sure what autism means for me or how much of my life it has affected. I felt like a pretty normal kid until third grade. I had a good group of friends that I would spend time with at recess or during lunch. I was in speech therapy because I had a hard time saying the letter “R”. I didn’t feel like therapy made me any different than anyone else though. I went with a few other students and we played games. It just felt like a break from class for a while.

In second grade, I started hanging out with a certain boy in my class. Typical, elementary school crushes, we would sit on the swings at recess and talk. I hardly spent any time with my group of friends because I would be with my seven-year-old crush. The next year, he moved away and I assumed that I could go back to my group of friends and nothing would have changed. Of course, I was wrong. A lot changes in a year. My friends had new friends, a new leader of the group, and new things they liked to do to pass the time.

I no longer felt like I fit in, and set off on my own to find other friends. The thing is, I had no idea how to make friends, how to talk to people, how to recognize facial expressions or know if someone liked me and wanted me around. My first group of friends evolved around the sister of my brother’s best friend. She had been to my house before and so it was natural to gravitate towards her at school. When I left her and that group of friends, I had no leads. I had no one to gravitate to, and not being able to say the letter “R” made it difficult to avoid teasing or misunderstanding.

It’s a pretty simple story and seems to have little to do with autism, which is exactly why it took until seventh grade to receive a diagnosis. People said I was shy; they blamed it on my speech impediment; they said I was lazy or that school was just hard. I don’t even think my family understood. How could I explain something so simple and yet so difficult? In my seven year old vocabulary and social skills, how could I explain that I was still the same person, that nothing had changed about me; it was the situation that changed and I didn’t know how to handle it.

Once I was diagnosed, nothing really changed. I had some accommodations for school work and we focused more on social skills in my speech therapy sessions. It was still incredibly difficult, but I just kept going. That was all I could really do, all I can really do.

Now that I  know more about autism, I am beginning to explore what it means. I’m beginning to explore the differences in social reading, emotional reciprocity, and giving of social cues. I’m not good at it, but I am pretty good at faking it. I guess and then search for clues that I was right or wrong and make a course correction. I think we are all like that. We all don’t fully understand each other, no matter how well we can read social cues. For me, it’s just been more of an emotional and psychological journey.

What I am learning more about and learning to embrace more is the “restricted, repetitive patterns of behavior”- the sensory side of autism, the special interests, stereotyped movements. In my intellectual, black-and-white mindset, it’s not easy to accept these sides of autism. My mind tells me they are wrong, abnormal, different, unacceptable, unforgivable, unlovable. I’m just starting to get past those thoughts, but it’s difficult. It’s difficult to rewrite years of observation, experimentation, and self-experienced research. But that journey is a story for a different day.

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!

Exercising

I absolutely love exercising. I’m not very good at it because I just don’t really feel a need to go out of my way to exercise. But I enjoy the feeling of my heart beating, my lungs expanding, and the blood rushing through my veins. It’s like the opposite of a tight hug- like being hugged from the inside out.

When I am not in a good mood, I exercise to get that feeling. It makes me forget about what is bothering me and just focus on trying to breathe. I exercise because it makes me feel alive.

Sometimes I feel so extracted from the world. Like my thoughts and mood have pulled me from being able to be around people. But when I exercise, I feel so alive. I just feel. I feel in a way that I don’t usually feel. Instead of all the sensory pressures on the outside, I can feel them on the inside. And for some reason, that makes it easier to go back to feeling pressure on the outside again.
Sensory Blog hop

 

Hearing Voices

I have been incredibly busy the last few weeks and I’ve had a ton of thoughts going through my head of posts to write, but this has been on my mind a lot lately so I figured I’d go ahead and talk about it.

Hopefully the title doesn’t throw people off. I’m talking about voices from when people are actually talking to you, not voices in your head or hearing things when no one is around.

Hearing the sound of someone’s voice is very hard for me to do sometimes.

I don’t know how most people hear the world, but when I hear the world I usually hear background noise first. I hear the sound of the wind rushing past my car as I drive more than I hear the sound of the radio. I hear the sound of the dishwasher or the dryer or the air conditioning or heavy breathing more than I hear the words someone is saying to me.

Unless sounds are at a different frequency, I have trouble differentiating between words and sounds. So if I’m listening to someone talk and their voice is at about the same tone as the sound of the dishwasher, I’m probably going to understand only about half of what they say. Meaning, I’m basically gathering the rest of the conversation from the context of what I do hear.

So if you’ve ever wondered why someone turns the sound up on the TV during the talking parts of a movie but then back down again during the action scenes, that’s probably why. The background music or other noises make it hard to decipher what people are saying so we try turning up the volume in an attempt to understand what’s going on. But when the other noises come back, we hear them at full volume and need to turn the sound back down. (Well, at least I do. I really don’t like loudness at all.)

So if I ever ask you to repeat something or look at you like I have no idea what you just said, it’s not because I’m not listening. I just can’t hear you with the sounds of the rest of the world. And I’m hoping that if you say it again, I’ll gather just enough from the context to understand the rest.