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?

I Am Loved

I am loved.

I have to remind myself of that often. I feel a little ridiculous in recounting all the things I do to remind myself that I am loved and wanted and important and of worth.

I have sticky notes in my car from friends saying encouraging things. I have pictures on my wall and my dresser and my nightstand. I have notes and letters on my nightstand and sticky notes on bed posts. I keep emails and texts and screenshots of especially meaningful texts and emails and Facebook statuses. I have a box under my bed, filled with every card or note or tiny piece of paper almost anyone has ever given me.

I used to take a particular street to get to my house because it passed a friend’s house and seeing it every day helped me remember that I have a friend. I kept a picture of my best friend from middle school on my dresser for 8 years even though we didn’t really stay friends after middle school because it reminded me that at some point, at some time, someone cared about me enough to give me a picture of them.

Things are different now. I am more loved than ever and feel it more than I ever have before. And yet… I still need to remind myself of it every day. And sometimes, I need others to remind me of it because my reminders are just not enough.

Is it ridiculous that after feeling like I didn’t really have friends for over a third of my life, that I still can’t believe it on most days? Is it ridiculous that I constantly need to be reminded that I am loved and wanted and people enjoy my company?

I still wonder why anyone would want to be around me. I still wonder why people even try to talk to me. I still feel like a stranger that will never fit in or belong in this world.

Does everyone’s past bother them this much? I feel like I have overcome a lot of my past. I have worked through a lot of stuff. I have healed and recovered and gotten better. Yet, there are times when I wonder if I’ve made any progress at all. Is it possible to stop doubting my worth? Is it possible to believe that I have friends that want to be my friend and that I’ll always have friends? Is it possible to believe in a reality that doesn’t seem real?

Do you ever wonder if you are loved? If you have worth? If you have friends? What do you do to remind yourself?

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.

My Open Box

I feel like I live in a pretty protected community. That’s not a bad thing. Everyone is really nice and they are willing to help out when needed or asked. Sometimes though, I just feel somewhat out of place. I feel like everyone has their lives wrapped up in nice little boxes, not fancy or anything- I don’t feel like people around me are self centered or pompous. I just feel like most people around me are the stacked up boxes ready to be shipped out of the UPS store. They are “finished” and sealed up and ready to be delivered.

I feel like an open box. I don’t feel like a broken box or a messy box, just an open box. I feel unfinished. In a world where everyone seems to present the completed parts of themselves, I feel like I am somehow behind or missing something. Parts of me are being taken out and rearranged and put back in. Some things are taken out and replaced with better things. It’s just a constant process. I am in a constant process of change and growth. And I don’t see my box being closed up and ready to be sealed anytime soon.

Looking around though, I feel like maybe I am missing something? Maybe I am behind and still need to catch up to everyone else? Is everyone else really done, just with the possibility of being decorated a bit before they’re presented in their best state of being?

I have always been a little behind developmentally. I feel like I went through my teenage years in college, my single years didn’t really start until many years after I turned 18, and I am still working on the whole dating life and getting ready for marriage even though I feel like I should be ready to do those things by now. Is that all this is though? Is it just that I need to catch up to everyone else? Or is it that I haven’t figured out what I need in my box yet?

I guess my question really is when or if my box will ever be closed. Will I ever be done like so many others around me seem to be? Or am I just an open box sort of person, constantly trying to switch out my contents for the next stage in my life?

I know a few other people that are like open boxes. I see them growing and changing and rearranging themselves. I connect with these people. I understand them because that’s how I am. I just sometimes want to be a closed box. I want to be finished, presented in a nice little package for my next stage of life.

I get that we’re never quite “done”. We keep learning and growing and becoming better. I just feel like most of the people around me grow and then get to a comfortable spot and stay there for a while until something new comes along, then grow again and get to a new state of consistency and do it over and over again. And I just wonder if I am missing that consistency or if it is just that I will constantly be different from everyone else. Am I missing out? Or is this just another way of living?

Autism Employment Forum

I have been thinking recently about the job experiences I have had as a person with autism in the workplace. There were a lot of things I didn’t understand that would have been helpful to know back then.

So I started researching support for working adults with autism. There isn’t really anything online. There are links to sites that will set you up with a job coach or employment specialist, and there are a lot of links about hiring someone with autism. But what if you have a stable job as a person on the autism spectrum? Or what if you are fully capable of finding your own job, but this is your first job and you have no idea what your rights are or what to do in certain situations? Where do you learn the things that no one really tells you about working and having/ keeping a job?

I am contemplating making a forum for working adults with autism, or for someone between jobs, or just entering the job field. I’ll answer questions I’ve had and initiate discussions about general employment practices or questions.

It will be a place where we can address topics such as: how do I know if I need accommodations? If I do need accommodations, how do I access them? Where can I go to get help? What are my rights? What do I do when I need a break but management isn’t readily available? Should I tell people I have autism? How do I quit my job? How do I ask for a raise? How do I ask for time off? How do I learn the rules and policies so I don’t get in trouble for breaking them? What can I do if I get in trouble with my supervisor or manager?

But before I go through the trouble of making this forum or discussion group, I need to know if there is interest in such a group, and if there is interest, I need help spreading the word.

That’s where you come in. If you would be interested, like or comment on this post. If you know someone that may be interested, share this post. If you have any input or suggestions, let me know.

If there is sufficient interest, I’ll get started on making a group like this. Thank you for your help!

Fears and Questions

I read too much into things. I assume that someone not talking to me means they hate me or I annoy them or they just simply don’t care about me.

A few months ago in therapy, we briefly discussed why I don’t reach out to people. My therapist proposed a low cost to reaching out, but I told him about the high cost I feel from it. I am terribly afraid of people. I am afraid of being abused. I am afraid of being yelled at. I pretend like everything is okay and that things don’t affect me, but the truth is that I am afraid of breaking down, all the time.

I would almost rather disappear. I would almost rather be the only person in the world than try to navigate the dangerous waters of socializing. But if I’m going to be around people, I need them like I need to breathe. I need them to like me, to think well of me, but mostly to not get annoyed with me.

I don’t care if people hate me. I don’t care if they yell at me or put me down- as long as it’s not someone I care about. If someone I care about even thinks I’m annoying, that destroys me.

Maybe it’s because I find lots of people with Aspergers to be annoying. I know that is terrible to say, but it’s true. They talk too much and don’t listen enough. They are always trying to bring all conversation back to them. They get upset when you don’t do things a certain way. Not everyone with Aspergers is like this, just the ones I think are annoying.

I guess I’m just afraid of becoming that. I know it is not their fault. They don’t understand that what they are doing is pushing people away rather than drawing them in. That’s why I’m so afraid of annoying people. I am afraid that I won’t realize that what I’m doing is pushing people away rather than drawing them in. I don’t know how to tell if someone is annoyed. I don’t know how to tell when I’ve said or done too much.

That is why it is so hard to do good. I want to make people happier, but I don’t know if it will cross a line. Do people get tired of good things being done for them? Do they get tired of thank you notes or just expressions of gratitude? Do they get tired of hearing how amazing they are or how much they are appreciated?

These are the questions I want answered. These are the questions I need answered if things are ever going to change. I need to know if what I am doing is okay, because otherwise, it will always feel wrong, and I’ll always struggle with the fear of not knowing if what I do is really good or not.

What’s Your Favorite Room to Clean?

I work at a place that does work training, teaches English to non-native speakers, and has a variety of tutoring subjects. Anyway, I was walking by one of the offices and I heard a tutor asking what was the person’s favorite room to clean in their house. I have no idea if they were asking the question for work training or English or some other tutoring, but it intrigued me.

It’s not a question you hear every day and not something people normally think about. So I thought about what my answer would be to that question. I guess my favorite room to clean would be the bathroom. Probably mostly because it’s just straightforward. In my room or the kitchen I just don’t know where to start. There’s lots of things to clean, but do I clean the fridge or the stove or the counter first? In the bathroom though, the only big thing is the bathtub so everything else is just downhill from there.

Anyway, I figured it was a pretty interesting question so I decided to post it on here. So, what’s your favorite room to clean in your house?

Sisterhood of the World Blogger

This blog has been pretty depressing lately. I apologize for that and I hope it becomes happier and more hopeful in the coming weeks. To switch to a happier mood, I’ve decided to finally accept an award that’s been sitting in my draft posts for a few months.

I was nominated by Merryn at Humble Heart Scribbles here. Thank you for the nomination and sorry it took me so long to accept it.

1. What would you say are the three things which your closest friends have in common?

My closest friends are all incredibly amazing, but I guess that most people would say that of their friends. What makes them amazing to me is that they empathize with others, they always try to help, and they make me happy.

2. Describe a time in your life when you were sinking and a friend helped you up emotionally/ practically?

This is pretty much my entire life. But the one that came to mind first was a few years ago when I was struggling with suicidal thoughts and health issues. I had amazing roommates that were there for me when I really needed it and really didn’t deserve it.

3. What are your preferred love languages out of these 5 – (physical touch, words of affirmation, gifts, acts of service, quality time)

Quality Time- I need quality time. It’s like my life force.

4. Tell us a pearl of wisdom which will help get us through a challenging time.

I have never had a trial that I wasn’t grateful for. Life is hard and times get tough, but they make you grow and that’s what makes life worth it.

5. What would you tell someone who struggles to find purpose in life?

Life isn’t about getting through it. It’s about getting into it. If you live life trying to get through the hard stuff, you miss living in the beautiful stuff. The purpose of life for me is becoming the best me that I can be and even though trials are hard, they make me better. So if you can become more beautiful in the hard stuff, I think you’ve found your purpose.

6. What is your favourite “pick me up” tune?

I guess it’s “I Get Knocked Down” by Chumbawamba. I haven’t really listened to anything other than Christian music in about 3 years so it’s hard to think of just a regular “pick me up” song.

7. If you only had one sentence left to say, what would you say?

I love you. (Seems kind of an obvious one, but if there’s one thing I want people to remember about me, it’s that I love them.)

8. What would you do if you could go on holidays for a whole year?

Travel the world to visit every person I’ve met online

9. What is the first thing people tend to notice about your character?

Probably that I’m quiet (which really isn’t very accurate once you get to know me)

10. What is your favourite thing you did this week?

Visited with my sister and her family

(I’m supposed to nominate people right here, but I haven’t really read many blogs in a really long time. And the blogs I do read are way out of my league to nominate. So… here’s my questions to anyone who reads this. And if you want to go ahead and accept the nomination on your blog, be my guest.)

1. What is one thing you would like to do better?

2. If you could get away with committing a crime, would you and what crime would you commit?

3. What is your favorite book and why?

4. Who is one person you wish you thanked more?

5. What would be your ideal vacation?

6. Who is your favorite person in the world and why?

7. What is one thing your parents did that you do now?

8. How long have you been blogging/ reading blogs?

9. What is your favorite instrument?

10. What is something you would say to your younger self if you had the chance?

Here are the rules for the award:

Thank the blogger who nominated you, linking back to their site.
Put the award logo on your blog.
Answer the ten questions they have given you.
Nominate ten people.
Make up ten new questions for them to answer.

He flapped

So far I am the only one in my family and extended family that has been diagnosed with autism. We sometimes speculate if a couple other family members have autism, but nothing has ever come of that. So basically… I’m all alone when it comes to trying to figure out what autism means and how to deal with it. I know my parents tried to learn about autism when I was younger so they could help me out more, but learning about it when you have autism is completely different than learning about it when you don’t.

When you learn about autism and don’t have it, you’re seeking understanding and perspective. When you’re learning about autism and do have it, you’re seeking to understand yourself, but you’re also seeking for validation. The quest to learn about autism isn’t just for understanding- it’s to figure out if you really are as alone as you feel.

I decided to learn about autism because I wanted to be proven wrong. I wanted to learn if I really was broken or if I am just different. And the more I have learned about autism, the more I have realized that I’m not as broken as I used to think I was. I’ve learned that autism isn’t something I should be ashamed of. I’ve learned that autism makes me different- not less.

One of my biggest questions since starting this journey of learning about autism is how much of me is different because of autism. What are things that people with autism do that people without autism never do? Or is it simply that we do the same behavior only we vary on whether we do it longer or more often?

Anyway, the reason for this post is that I finally had some sort of answer to one of these questions. I have often wondered, do people without autism ever flap or ever want to flap? I still don’t know the answer to this question, but… the other day my nephew flapped.

It was only for a split second. But… he flapped…

And my heart stopped for that split second… not because I was worried that he could have autism, but because I was finally not so alone.

I don’t know what it means that he flapped. I don’t know if that means that it’s normal for little kids to flap or if that means he has a little bit of autism. But for now it just means that I’m not so broken.

How do you say the hard stuff?

I have made a lot of mistakes in my life. A whole lot of mistakes. And there’s so much I need and want to do to fix things. But trying to figure out how to fix things is so hard sometimes. I know what I have to do… I just don’t know how to do it. There’s so much I want to say and so much I need to get out, but I don’t want to make things worse. I don’t want to make a mistake… again… So, my biggest question is how do you say the hard stuff?

How do you say I’m sorry for being someone I’m not?

How do you say I miss you and want to be friends again?

How do you say I’ve changed?

How do you say I’m sorry for hurting you or scaring you or worrying you or not appreciating you or not being a good friend to you?

How do you say you knew me at my hardest and worst time of my life?

How do you say can we start over?

 

I keep thinking that maybe I just need to do it, just be honest and straightforward and get everything out. But then the thoughts creep in, “is this my autism talking?” “do people want to hear from me after all this time?” “do people even care or think about it anymore, and if they don’t, should I remind them?” “would it matter if I told someone what I feel I need to tell them? -would it just be an annoyance?” “what if I message someone and it backfires? -that’ll defeat the whole purpose of the message in the first place” “am I worth it? am I worth resolving my past with others? am I worth trying to fix friendships? does anyone that I need to talk to even care about me still?”

And the biggest question is still, “how do I do this?”