Nightmares

Do you ever have a dream where you are your own worst nightmare?

I had a dream where I got stuck in an elevator. For some reason, I had a stroller in the dream. I had just gotten off a plane and taken the shuttle to the main area. I had to take an elevator because of the stroller. The elevator was packed with people and strollers and children. For some reason, I was going to the 4th floor, while everyone else was going to higher floors. When the elevator stopped on the fourth floor, I became anxious about how to get everything out with me. I knew I had to get my bag and the stroller, so I thought I would throw my bag out of the elevator and then turn around to get the stroller.

Unfortunately, the elevator sensor registered the bag I threw out and proceeded to close. I panicked that the elevator was moving and pressed the stop button. I then bypassed the safety system and opened the elevator door to find I was no longer at the door where I needed to exit. The other passengers were angry with me. They called me stupid for thinking I could stop the elevator and get out. They wanted me to close the door and get the elevator moving again. Unfortunately, it wasn’t that easy to put everything back and fix the elevator by myself. We were stuck while I tried to fix my mistake and call maintenance for help. When the elevator did get moving again, I was questioned by security and my bag and stroller were searched for bombs. After deciding I was not a terrorist, security let me go to find the contents of my bag dumped out from their search.

Anyway, the point of this story is that I do not feel ready for the next stage of my life. I know most people do not see me as autistic. My family and friends feel I am ready for the next step in life, to start dating and get married and have children. I am not so sure that I am ready. I worry that I will not be able to handle the added stress and pressure.

I do want children and a partner someday, but I also question if I will ever be ready for that. Can I handle doing multiple things at a time like moms have to do? I have heard others say that people with autism cannot handle a lot going on. I can handle a lot going on, but only if it is structured. When things lose their structure, it is difficult to handle all the changes. Will I be able to handle the difficulties of motherhood and the constant changes and interruptions that come with it? Or will I find myself in a constant state of being overwhelmed and unable to care for myself, much less a child?

Something Good- Day 169

Today was a rough day. I was pulled over by a police officer for not stopping at a stop sign. I had stopped, but there is a curve in the road and walls on each side, which prevented the officer from seeing me stop. I do not know what to do when I get stopped by a police officer. I panic and get defensive because I did nothing wrong. This is my third time being stopped by an officer, and my panic reflex has gotten worse each time. It especially makes me anxious because I feel like I have no control over it. I obey all traffic laws as well as I can, but that does not mean I am safe from an officer trying to make a point.

Anyway, the officer gave me a warning, which I still resented because I knew I had stopped. As I drove away though, I was overcome with feelings of anger and resentment and hurt. I wanted to call my best friend or my sister or other family member, to help calm me down and get to a state where I could go to work okay. Instead, I drove to work and blasted my music. My body tensed to the point where my hands couldn’t move the way they should. I thought about pulling over and calling my boss, but I relaxed just enough to drive safely to work.

My body was aching from tensing up so much, and I was in a bad mood. My coworkers could tell right away that I was upset. After working for a while, I finally calmed down enough to do my job. I did snap at one of my coworkers at the end of the night though, and my boss asked me what was going on. I told her about getting pulled over and my bad experiences with police officers and wanting to call out sick. It brought back up some of the feelings, but I mostly held it together.

Anyway, in the midst of all this, I finally was approved for my house refinance. I have been waiting for this for weeks and working on refinancing for months. I am grateful for the terms I was given though and the way this all worked out.

Another thing that made me smile today was talking with a lady who took her dog outside to do his business. She had a crutch, so I stopped to ask if she needed help with walking her dog. She thanked me for my kindness and said I was sweet to offer. She introduced herself, and we talked for a minute before I drove off. It felt good to connect with someone for a minute or two.

Something Good- Day 79

I went back to work today. It was actually a really good day. It felt mostly normal, which was amazing. Everything was back to the normal routine, with the adjustments made on Tuesday. I was grateful everything turned out well.

Something Good- Day 77

Sometimes I forget I have autism, especially at work. I work at a bank, and things are usually the same every day. I help customers with their transactions. We have a weekly schedule. The opening and closing routines are always the same. Even though I think I do well with changes, the structure helps me remain calm when changes do come.

Things were different when I went into work yesterday. The opening routines were the same, but everything changed after that. The lobby was closed. We could only help people in the drive-through. I could handle that, but then more changes came. Our cash machine was not working, and they asked us to wear gloves the whole shift. I started to feel anxious. The longer I wore the gloves, the more anxious I became. And customers kept coming, so I did not have time to process all the changes and adjust to them.

After an hour, I took an early lunch to get away from everything. I broke down in the break room and could not stop crying. My boss came to check on me after a few minutes. She said they would work something out with the gloves and that I could go home for the day if I wanted. I decided to go home because I was emotionally exhausted. I took a nap almost as soon as I got home.

After the nap, I called the branch manager to discuss my needs. She told me that I could take an additional day off if I needed. I felt fine at the time but said I would let her know. As the afternoon progressed, I felt tightness in my chest and a sick feeling in the pit of my stomach. I told my manager I would take another day off and return on Thursday.

It is not fun to have a meltdown at work and not be able to explain why to your boss and coworkers. But I am grateful for their support through it.  I only realized after this experience that I did not like the new girl because she did not fit in my routines. She did not do things the way I wanted, and it frustrated me. I know I owe her an apology, and I need to express my appreciation to all of my coworkers.

Anyway, my something good for yesterday was being able to talk to my sister to help me calm down. Then coming home and finding some peace in the chaos. I am hoping the extra time to process everything will help me return to work tomorrow better equipped to handle this whole situation. People need banks to stay open during this time as much as possible, so I am glad we are staying open for now.

Something Good- Day 13 & 14

I got off early yesterday, so we were able to go to a friend’s house to have dinner and play games. Afterwards, we met up with another friend to watch a movie, which was also really fun.

My favorite show started up again last night, so I was able to watch the new episode of “The Good Doctor” tonight. It hit close to home because I relate so much to the main character, but I just love that I can explain my feelings through someone people can watch on screen.

Expectations, Needs, and Problem Behavior

I have been thinking a lot lately about my childhood. One thing I realized is that I didn’t know how to explain my needs so that someone could help with them. It wasn’t until I was on my own at a university that I could finally focus on and address my own needs.

I bought myself clothes that felt soft and made me more comfortable, so that I could handle sitting still more easily. I bought ear plugs that I used in classes when the lecture was too loud. I never had super bright classrooms in college, but I could have easily bought transition lenses and no one would have said anything about me wearing “sunglasses” in class. Now, I often use the night view on my rearview mirror because headlights are too bright for me. I also have tinted windows on my car that help with brightness during the day. I carried snacks with me to eat during class or before or after to help calm me down. I still have a car full of snacks for this.

The thing I realized is that adults expect so much of children and teenagers. If you don’t meet the expectations, you are said to be acting out, when in reality you are simply being yourself. I remember one time in high school when I got in trouble for taking notes about what the teacher was saying because I did not know how to defend myself when she accused me of not paying attention. There are many stories I can tell like that. I did not know how to communicate my thoughts or needs or desires, so I ended up getting in trouble because adults did not understand. But how can you possibly have your needs met when everything is stacked against you?

So I endured elementary school and middle school and high school, until I could finally address some of my needs in college. And this is what we require all our children to do! We require them to fit the norm, with the pretense that it is preparing them for the real world. In reality, the real world is about enjoying life and finding ways to cope with the less enjoyable parts of life. We may not understand what a child needs, but I think it is important to ask ourselves if a “problem behavior” is really a need that is not being met. Don’t just avoid the problems or force children to ignore them, give them ways to cope. Try to find solutions instead of just seeing the child as the problem.

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Showing What Autism Feels Like

I have been watching “The Good Doctor” recently. It is my favorite show I have ever seen because I relate to so much of what the doctor goes through. I have read online that this show has caused a lot of controversy in the autism community. Some people even refuse to watch the show because they feel that someone with autism should play the main character or be more involved in the filmmaking. Another reason people are opposed to the show is that it only shows a narrow view of autism. It shows the experience of “the autistic savant”, which is not how most people with autism experience the disorder.

I understand these concerns, and I understand the desire to have more people’s experiences shown on television and in movies, but I understand it even more after watching this show. The Good Doctor is everything I ever wanted to show people about my autism but never had the ability to communicate. I encourage everyone close to me to watch the show because it so accurately portrays my thoughts and feelings. I look forward to every episode because it shows all of the things that I cannot show and tells them in a way I could never do. I wish that everyone could have this experience. I wish that everyone could refer their friends or family to a particular character, or even episode of a show, and say that is my experience- that is what it feels like to be me.

I have spent my life trying to hide everything about me that could be considered autistic. I have succeeded in this to the point that even therapists did not believe that I had autism. I remember one particular school counselor in high school that told me I had a hard time making friends because of my level of intelligence. She said that I probably did not relate to the other students that had lower IQ levels than me, which was interesting because she did not even believe me when I told her my IQ level and said it was probably 40 points lower than I stated. Anyway, the point is that I am very good at hiding my autism, and my intelligence helps me to do that.

Sometimes, though, I would like people close to me to understand what I go through. Even though I do not like to “be autistic”, I would like my friends and family to see how hard certain things are for me. However, I have trained myself to not show autistic traits, and I cannot force myself to show my feelings, even to the people I trust the most. The only time that you can tell I have autism is when I have a mental breakdown, which makes it too late to explain my feelings and rarely happens around other people.

I understand that not everyone with autism is a savant or a genius or relates to Dr. Shawn Murphy in “The Good Doctor”, but it is important to have shows like this. It is important to show someone’s experience. Even if it may not be the experiences of the majority of people with a disorder, it is a step towards explaining the unexplainable. It is a way for someone to understand the experiences of another. I hope that they make a lot more shows like this. I hope that they make more shows that try to exemplify the experience of a particular group of people. This show has meant so much to me over the past few months. It has been a source of comfort and commiseration. I hope everyone is able to experience that someday.

Best Friends

I was feeling lonely a few days ago because none of the things I was trying to do to spend time with people were working. I had invited people to a conference, movie night, game night, I even organized a committee meeting at church, but no one came to any of it. And I found myself in a lonely and vulnerable spot because I desperately need people, but I am terrible at figuring out how to spend time with them.

In my lowest moment of complete desperation, I got a message from someone thanking me for something I did for them. I broke down because I felt like I was doing everything I could, but I was still alone. And then, after a while, I felt the gentle reassurance that I was doing okay. I mean, I don’t have all the friends I want, and I wish I could spend more time with the friends I do have, but I have the friends I need.

When I was a kid, I prayed every day for a best friend, any friend. I prayed that someone would see me and like me and want to spend time with me. And I got some friends over the years. I only saw them at school or church or things like that, but it was something. And finally, at the age of 20, I got a friend that I could count on, that I felt like loved me, that I felt like wanted to be around me, and that I felt I wouldn’t ruin our friendship with my problems.

It was pretty amazing to feel loved, wanted, needed, important. For the first time since I was a little child, I felt whole. And then I became friends with the most wonderful person. And it was like every bad thing that ever happened to me was okay. I looked back at my life and saw hope in places I had previously seen pain. And it was life changing to feel safe with someone, to trust them with myself, to want to tell them everything. My best friend has been everything to me. She has had a healing impact on my life that I could not be more grateful for.

So, that night when I was feeling utterly alone, I remembered the little girl that just wanted one friend, and I thought, I have the most amazing friends I could ever ask for. I still get lonely. My best friends are farther away from me than I would like, but they still love me. I am still wanted, needed, loved, and safe with someone.

I heard about a school that was trying to ban best friends. They said that it was unfair to those who didn’t have a best friend. I grew up all through school with no best friends, with hardly any friends at all. I ate lunch alone and played alone, and when someone did talk to me, it was usually to get help with something. But I would go through that all again for a best friend. I don’t think you can truly ban best friends, but I would never want that for anyone anyway. As someone who knows what it is like to be jealous of other people’s friendships, I plead with you to never try to prevent a friendship. Teach inclusion, teach children that they do not have to only have one friend, teach children to make best friends with everyone, but don’t prevent that special bond with someone.

Having a best friend has changed my life. With each best friend I had, I became a little less broken, less lonely, less scared, more confident, more secure, more at peace. I think I will probably always have lonely moments. As an extrovert with autism, I simply do not have the capacity to create the friendships I want and participate in the amount of social activities I need to feel completely fulfilled, but I have the relationships I need. I have the friends I need to get through the lonely moments, and that is enough.

Autistic Person vs. Person with Autism Follow-up

I wrote this post about 3 years ago, but never posted it because I was still unsure of how I felt about everything. However, after my last post, I feel this post will bring more understanding to my point of view.

I have never understood the whole debate between whether we should refer to someone that has been diagnosed with autism as an autistic person or a person with autism. Who decided that saying someone is autistic is an insult? Who decided that we lose value based on how we are labeled? Who decided that the order in which we say something connotes the importance of each part of the phrase? And ultimately, who decided that the order of words determines whether we are people first or disabilities first? Who decided that who we are has to be ordered?

To me the debate is completely unnecessary and detracts from life as a whole. If we can’t even say a sentence without someone arguing about the way we phrase something, how can we possibly hope to have a wholesome and healing conversation about autism and what it really means?

Autism is a noun; autistic is the adjective of that noun. Why does this have to mean anything other than that? Why do people even talk about person first language? We are all people. Who says that saying we have a disability detracts from our value as people? Who says that saying we are autistic people means that we are less than saying we are people with autism?

And in reality maybe we should be asking, what makes autism less than the rest of the world? Why is autism considered less, not as valuable, demeaning? Autism is a disorder. But this does not make someone with autism of less worth than someone without autism. Is a blind person less than someone with sight? You who see the world differently, does that mean my world is of less quality than yours? Perhaps I could show you things in your world that you never even knew existed. Perhaps my world is of no less quality than yours. Maybe it is just different.

And that is what we need to realize. Autism is not less. Autism is not person first or disability first. Autism is not an insult or a lower standard of living. Autism is a difference. Autism is the reality of a world that the rest of the world may never know.

And it is okay to be different.

Autistic Person vs. Person with Autism

There is a great debate in the autism community about how to refer to someone that has been diagnosed with autism. In general, it is usually parents or individuals who do not have autism that advocate for the terms “person with autism.” It is usually adults or teens living with autism that prefer the term “autistic.” I have a different perspective than most on this subject. For me, the terms are both equally applicable, but not equal in meaning. Saying that a person has autism is not the same as saying that person is autistic.

Autism for me is a thing. It is an abstraction. It is a label that is meaningless and insignificant until you apply a meaning to it. I consider myself to be a person with autism, not an autistic person. I have been diagnosed with autism, but I have not and generally do not allow myself to be autistic. You see, to be autistic is to be part of a community that lives differently. Being autistic is embracing the differences that come with autism and learning to live those differences rather than hide them.

To show you what I mean by this, I will give two examples. The first is a child who is born deaf. If that child is born into a family that is aware of and embraces the deaf community, the child will learn sign language. They will learn to communicate using their differences and to embrace the world created by their differences. On the other hand, a child born to parents that are completely unaware of what the deaf community has to offer may opt for cochlear implants, may teach their child to read lips, may communicate with their child through writing rather than words, or do other things to help the child live life despite their differences. One approach teaches the child what is possible because of their differences. The other approach teaches the child what is not possible because of their differences.

Another example that may be applicable to more people is terms used for athletics. Someone who plays sports is called an athlete. Someone who places an importance on sports so that it becomes part of their life is athletic. I enjoy sports. I play them when I can and have played on teams before. However, I would not say I’m athletic. I may have an athletic build, but I am not athletic in how I live my life. Likewise, I have autism, but I am not autistic in how I live my life.

I admire people who can be autistic. I also admire people who have autism, but are not autistic. One way of living is not necessarily better than another. It is simply different. However, in saying that, I need to make a point that I believe we should be more accepting of autistic people. The general public tends to admire people with autism, the people that pass for “normal” and do not show autistic traits. We say that they learned to control it, that they overcame this obstacle, that they faced opposition and did not let it stop them. While this is all true, it does not make the autistic person less valuable. They have learned to embrace what others fail to even acknowledge. They have learned to be themselves even if it doesn’t look like the people around them.

Honestly, I do not want to be autistic. I don’t think I could face that pressure. I have always wanted to be “like everybody else.” I pride myself on my ability to blend in. I cling to my sense of belonging. Maybe someday I can be autistic, but for now, I am simply a person with autism, and that is okay.