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.

Grateful for Hope

Last night I had my last therapy session. I have had therapy off and on since I was a kid, but I have never ended therapy because I didn’t need it anymore, until now. For the first time in my life, I feel like I’m going to be okay. For the first time in my life, I am not scared that I will get to a place of absolute darkness again. I have hope and resources and support.

I never imagined I would get to this point. I know that depression is temporary, but I saw my life as a continual cycle of light and darkness. That’s what my life has been like up until this point. I am a happy person, but I would go through weeks, months, and years of depression. There was little hope in those dark times. There was no escape from the thoughts of suicide, worthlessness, and hopelessness. I pictured the rest of my life following that pattern of darkness, depression, and hopelessness, mingled with periods of light, hope, and respite from the storm.

I am so grateful to finally have hope. I don’t expect depression to disappear from my life, but I am not scared of it like I was before. I am not scared of myself anymore. I am not scared that one day the darkness will win.

My biggest fear up until this point was that I wouldn’t be able to hold back the darkness. My biggest fear was that I would cut my life short in a moment of despair. And I feared it because it was so normal. It was so normal to think of death, of suicide, of ways it would happen or how it would happen.

For most people, suicide is something they think about in their darkest moments, when they have lost all hope or see no way out. For me, suicide is something I think about nearly every day, even when I’m not going through depression. So before, when I had no way to cope with those thoughts, they were pretty scary because I figured it was only a matter of time before I acted on it.

I am so grateful that is no longer my reality. I am so grateful to have hope. I am so grateful for the help and therapy and support that has gotten me to this point. I could not have done it alone, and I am so grateful that I didn’t have to.

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!

Therapy

Now that depression isn’t a debilitating part of my life for the moment, I have been able to focus on social skills in therapy instead.

It’s really hard to have client-driven therapy when you’re focusing on social skills. It’s like going to a talent show and being told there’s too many singers so you have to dance instead. Even though you explain that you don’t know how to dance, they just say to try your best and hope it’s what the audience wants. I feel like that’s what I’m doing most of the time in therapy. I have no idea how to communicate, but I’m trying to figure out how to dance and what the audience wants.

It’s sort of exhausting, but good at the same time. I don’t know what I’m doing and I’m drowning half the time, but I’m learning how to swim in the process. I feel like I have been treading water in the social realm for so long that learning to swim is crazy hard. But… At least I have someone who is willing to teach me and maybe eventually I can survive in the deep end.

(Sorry for all the analogies. It’s the only way I know to express how this stuff feels. Hopefully they all make sense!)

Please Be Selfish

I begged my friend today to be selfish. Maybe it was selfishness in myself, but I just couldn’t handle it anymore.

No amount of abuse should ever be tolerated. No matter how much you want to give people the benefit of the doubt or give them a second chance, it should never come at the expense of your own physical, mental, or emotional health. We see heroes as people who sacrifice themselves for the good of someone else. And it’s true, they do. But sacrifice doesn’t make sense if the expense is greater than the gain.

Risking your life to save someone else’s is a fair trade. Staying up late to talk to someone going through a hard time is a fair trade. Standing up for what you believe in despite opposition is a fair trade.

Allowing someone to yell at you and make you want to die to avoid hurting their feelings is not a fair trade. Allowing abuse to make someone feel loved is not a fair trade. Keeping someone in your life who decreases your safety or health in order to not damage their self-esteem is not a fair trade.

If any of this is something you can relate to, if you’re avoiding hurting someone else’s career or esteem or feelings, please please be selfish. Please let them go. Let them out of your life and get the help you really need. Life is too short. Life is too short to allow yourself to be hurt.

I’m begging you to be selfish, just this once so that you can be safe.

Drink Quickly

“Cup your hands and drink quickly.”

That’s the advice my therapist gave me last week. Sometimes happiness is fleeting. It seems to slip through our fingers like water. But if we want to drink it, we have to do our best to hold onto it.

Depression is an ongoing thing for me. I go through periods of depression that last from a few hours to a few weeks or even months. Sometimes those weeks and months string together over years so that small respites of days or hours are gulped down like chugging water after making it through the desert.

Unfortunately, chugging happiness doesn’t exactly fill your needs every time. But it helps. It helps you get to the next respite, which helps you to the next one and so forth. My life has been a series of chugging happiness to make it through the next desert.

I feel very fortunate to be going through the current desert of difficult circumstances after having spent a good year or so in an oasis of plentiful water. I remember telling my sister how happy I was and that I just wish everyone could feel that way. I couldn’t get through saying that without crying because it was such an amazing feeling of pure happiness and joy.

Right now is a respite from the last few weeks/ months of depression. I don’t know how long it will last, but I plan to cup my hands and drink quickly while I can.

Loving My Brokenness

Prayers are answered in strange ways sometimes. Sometimes it is through our weaknesses and brokenness that our most sincere and important prayers are answered.

I am constantly amazed by how well things all work out. I have struggled with depression for as long as I can remember, and I’ve always had autism. But I never suspected that depression would help me with autism.

I started going to therapy a couple months ago because I was thinking about suicide often enough that I thought I might attempt it again. I had gotten to the point where I just had to do something because I just couldn’t keep living the way I was. I needed something to change. So even though I didn’t feel therapy had ever helped me in the past, it was the only thing I could think of. 

I am so grateful that I got to that point of depression and suicidal ideation because it made me turn to therapy, and this therapy is one of the most amazing things that has ever happened to me. It has helped me so much with my struggles with autism. It has helped me with the deeper thoughts that lead to wanting self injury or death. It has helped me with self image and being a better friend and better person in general.

It’s not fun to be broken, but there is definite beauty in the brokenness. I am learning to love my brokenness because it leads me to help I wouldn’t have sought, friends I wouldn’t have made, and understanding I wouldn’t have had. I love being broken because I feel the difference it has made in my life. I am a better person because of the broken pieces of my life that have become something beautiful.