I don’t Need to be Fixed – I’m Just Autistic

Tags

acceptance, Asperger syndrome, autism, understanding autism

Asperger’s is now called High Functioning Autism

I know it’s Autism Awareness Month, but I don’t think awareness is enough.

Ignorance is the worst thing that ever happened to autism. I am not using the term “ignorance” in a derogatory way, but in its truest definition – lack of knowledge or education – about autism.

I find that even with this “Autism Awareness Month” the vast majority of the population is still ignorant of autism.

And really, that is understandable. It is hard to understand something that you haven’t lived – at least in terms of autism. How do you relate to someone who has such severe sensory processing disorder that a bright glare, a noise, or an odor can send them into a tailspin? You can’t, not really – unless you’ve experienced it yourself. Sure, you can empathize, but you can’t really understand just what it does when those lights are too bright or the noise is too loud or the odor is too strong.

Autism is a way of being – a different way of being. It’s a different brain, different neurological wiring.

Since when was being different a bad thing?

The way I see it, we are just another color in the box.

Why should I be made to feel like I have to change the very essence of who I am just so I will fit into society? Why is it OK For people to tell me that  should I change who I am to make them more comfortable? Why should I be made to feel like I don’t belong anywhere unless I am fixed or healed first?

And I couldn’t change anyway, no matter how hard I tried. And I have. I tried. I spent years hating myself because I was an outcast. I was different. I didn’t belong. But my brain will always be my brain – my autistic brain.

That’s right, I am autistic.

I am also tall, have blue eyes, and like to read. If those things are OK, then why is it not OK for me to have a brain that is wired differently from most people?

I am sorry if my autism makes you uncomfortable – sorry for you.

Instead of looking at the things that are different about me, the things you think are wrong, negative, or that make you uncomfortable (or even offend you), why not try looking at the good things about me?

Why not look for those positives and celebrate autism?

Yeah, we may not understand each other sometimes and I may say or do things that you think are odd, but why not try stepping outside of your comfort zone and looking at it from another perspective?

See, the people who accept me the best, accept my “autistic self” with all its social awkwardness and SPD and even meltdowns, are the ones who stopped framing me by their own point of reference. They put aside their preconceived notions about what a person is supposed to be, how they are supposed to act, and they said, “OK, she’s different, so what?”

They tossed out their rigid ideas of what it means to be normal. They took themselves, their own ideas, beliefs, and opinions, out of the equation. They stopped thinking in terms of that self centered perspective that, well, most people do. I think they call that human nature.

But even human nature can be altered or set aside for important things.

They accepted my reality and they accepted my version of normal. Yeah, there’s been a learning curve (and a lot of frustration on both sides), but I leave the floor wide open for questions – and I answer a lot of them.

I see it like this. We’re all in this autism acceptance thing together. Yes, there is some effort required on your part to seek out understanding, or the information you need to initiate understanding. But how can I expect you to take those steps if I’m not willing to meed you halfway? How can I expect you to do all the work if I am not willing to answer your questions and provide explanations – to help you understand? I can’t. That wouldn’t be fair.

So I do answer questions. I try to help people understand. I try to help them get to a place of acceptance. We don’t have to be best friends. In fact, I am much more comfortable spending the greater portion of my time alone. However, we do have to exist in this world together and I really thing that if you gave it a chance you would see that autism offers some beautiful, wonderful gifts.

I have said it before and I’ll say it again. God puts blessings in some of the most unexpected places – and one of those places is autism.

So please, I don’t need to be fixed or cured because I am not broken or sick – and I don’t want that anyway. I am not defective just because I am not like you. I am different because God wanted to give us a big, bright, beautiful world that is full of a lot of different flavors. Autism is just one of the more exotic ones. 🙂

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Time Perception Disorder

Tags

Asperger syndrome, autism, Autism Awareness, concept of time, time, time perception

 

Time Perception Disorder.

I have it.

I am autistic and it is part of the package (many autistics experience this, so my neurologist says).

I have no concept of time. One minute feels the same as one hour. Intellectually, I know that time has passed, but I don’t know how much.

I don’t know what time feels like.

Time moves separate from me, there is no connection. I can look at the clock and see that an hour has gone by or five minutes or whatever, but it all feels the same. This makes it really hard when I have to go somewhere or when I have a deadline. I do keep a timer at my workstation at home so I can set it when I am in a time crunch or when time is important.

Otherwise, time just does not hold much significance to me. I work until I am finished. I take a break until I feel rested. I don’t set an alarm to wake in the morning although I sometimes ask my husband to wake me when he gets up. Usually I just wake on my own without any help. I am definitely not a clock watcher.

Some people spend their entire lives trying to get out from under the clock. I have never been there. I never needed that escape.

My own research indicates that this “time perception disorder,” if you will (I don’t know what else to call it), tends to accompany certain conditions such as neurological disorders, autism, epilepsy, traumatic brain injury, Parkinson’s, and mental health issues like depression and bi polar disorder. Also, it seems that some people experience this intermittently while others have it all the time.

I fall into the latter group and I’ve had it my entire life. I have no perception of time.

It seems to go hand in hand with temporal issues and cognitive function that has gone a little haywire. I do have some cognitive issues; verbal processing is a biggie for me.

Also, all my memories are the same in feeling and experience – like an old photograph. Apparently, this is unusual as well. People say they have “vivid memories, like it was yesterday.” I don’t. All my memories look and feel the same – agewise. A memory from something that just now happened feels the same as a memory from something in my childhood.

Death and hurtful events don’t upset me like they do most people. When I experience them they almost instantly become familiar – like I have experienced them long ago. I am almost accustomed to them so they don’t throw me off like they do many people. That is because time is not relevant to me – it simply is not there.

There isn’t much out there, much information on this. In fact, some people think it isn’t even real. This causes problems because people who don’t have the condition just expect me to be able to process time like a “normal” person – they don’t understand the struggle I have with it. When I don’t perform as the expect me to, in regard to my time perception, they get very upset. Most are not aware that this is a very real condition. Some would say time perception disorder is debilitating, but the debilitating part is in the fact that people who don’t experience it don’t understand, don’t try to understand, and don’t believe it is real.

So is it real? You bet it is! I am living proof. However, if you know someone who experiences this – and they do not have a neurological or psychiatric condition – you may want to have them get checked out since it does not seem to travel alone.

I am not a doctor, but I do have the condition. Yes, it’s a real thing – very, very real.

Aspies and Relationships

Tags

Asperger syndrome, Aspie marriage, Christian Aspie, Christian Living, family, living for God, marriage, Relationship education, relationship with Jesus

One thing that I see come up quite a bit with Aspies is relationships – usually of the romantic kind.

I know that I wanted a relationship but it was an awful experience! It seemed that any man I would date or get into a relationship with would get completely frustrated with me.

Most of the time it ended in abuse, either verbally, emotionally, physically or all three.

It wasn’t until I put it all into God’s hands that I actually found a husband. CW is good to me, loving and he has taken the time to educate himself on Asperger’s. He doesn’t always understand, but he tries.

Does he get frustrated? Of course. He would get frustrated anyway. That happens when two people live together. But we work it out.

It also  helps that we keep God at the center of our marriage. He is the most important part of our marriage. We pray together each morning, worship together and help each other grow in Him.

So if you are a frustrated single Aspie, here is my advice to you.

Give it to God. Work on your relationship with Him right now while you are single. Ask Him to send you the person that HE has picked out for you.

Learn to be flexible. No one is perfect. Agree to accept each other just as you are. Help your partner understand your Asperger’s, don’t just expect them to accept it and be perfect.

Don’t believe the movies and books when it comes to marriage. Make your own marriage;  your own relationship. Don’t try to model it after a book you have read or a  movie you have seen because those scenarios are unrealistic.

Be prepared to work. Marriage is work and you have to be prepared to work at it. A marriage is like a tree. If you water it, fertilize it and take care of it, it will produce fruit and thrive. However, if you neglect it, it will wither away and die.

Finally, keep God at the center of your relationship. Just as you work at your marriage, so should you work at your relationship with God. It takes time and effort but both relationships are important.

Pray together, play together, talk and take time to know each other. But most of all, let your marriage relationship glorify God.

No Limits!

Tags

Asperger syndrome, Aspie, autism, Autism spectrum, Christ, God, Neurotypical, serving God

I tend to put limits on myself. I think a lot of people do it, but that doesn’t make it right. When we put limits on ourselves, we put limits on God.

That isn’t right.

When God first called me to minister to people who are touched by autism (families, parents, friends, spouses and, of course, those who are autistic or have Asperger’s), I put limits on myself.

I approached the whole thing with an attitude of “OK, I will do it, but don’t expect much. I don’t have money to promote this. I am not the greatest writer. I am a relatively new Christian (newly spirit-filled), so I don’t know what I can offer here. How am I going to reach these people? This isn’t going to work, I am too socially awkward to be effective. People are not going to want to hear from me.” The list went on and on.

I was willing but skeptical. I put limits on myself and, at the same time, I put limits on God.

Moses did the same thing.  Our pastor talked about that today at church. He was talking about how each of us is a part of God’s plan. He will do His works through us as long as we submit to Him and allow ourselves to be His vessel. God called Moses to do His work and Moses put limits on himself, thus putting limits on God.

But God has no limits!

When God is working through me, I have no limits!

As I wrote, put things out there. I poured my heart into this writing, submitting to God’s will and following His guidance. At first, I didn’t hear much from anyone. The stats on visits were meager, but the second month it had doubled. It continued to grow, but I fell again and began to doubt.

I would pray, “God, is anyone out there getting anything from this? Does anyone care? Is this making an impact at all?”

Then I started getting email. I treasure each and every note I receive. I have heard from other Aspies, parents, teachers, churches, friends, it has been amazing! I welcome your emails and comments! Please never stop writing!

But that isn’t even the best part. Yes, God broke through my own limitations that Asperger’s placed on me, by giving me the words to reach others and touch them in ways that resonate with them. He gave me the words to help people understand and help bridge the gap between the world of autism and the church. Ministering to someone who is autistic is usually dramatically different from ministering to someone who is an NT (neuro-typical, or “normal” person).

Yes, when I realized that I wasn’t living for myself, but for God and allowed Him to live in me, operate through me, the limitations placed on me by my Asperger’s evaporated. When I gave myself to Him to be His vessel, my whole world changed.

Matthew 19:26 “…but with God all things are possible.” Yes, when you allow God to take over, anything is possible! All you have to do is give yourself up to Him, submit to Him, listen, know His voice and be obedient. You will probably second guess some of the things He wants you to do, but that is natural (that is what my husband told me when I was skeptical). But just do it! I promise, it is so worth it!

My husband says that I have the gift of wisdom, but I don’t see that. Some things are still shrouded by the Aspie brain, but that isn’t always a bad thing. I might get arrogant if I recognized the “wise” things I said or wrote. I don’t want to be arrogant. Right now, I don’t know what they are and my husband and I don’t discuss that. We prefer to keep me this way, unassuming, innocent, if you will, of some of the ways that God works through me.

What I do notice, though, is that I am more at ease in social situations and that is one of the major, astounding miracles that God has done in my life. Eye contact is still very difficult, but I am better. I don’t rock as much when I talk to people and I don’t feel as anxious.

Social issues have plagued me my entire life, causing me to become be very introverted and isolated. But God is working through me and changing me (I won’t say healing me because it isn’t a healing). He is changing me so that I will be able to begin the next part of His plan for me. He has shown me that He wants me to speak to people, to groups.

Beyond that, I will socialize with these people after. I will talk to them one on one, have conversations, shake their hands and even hug them – all of them strangers (but brothers and sisters in Christ). At first this scared me half to death! Then I got really nervous.

Now, though, I am ready for God to open that door. And He will – in His time.

So what is God calling you to do? Is He telling you things that you are skeptical of? Why? What limitations are you putting on yourself? What limitations are you putting on God?

The Christian Aspie: Notes from the Blog

Tags

Asperger syndrome, christian, Christian books, Christianity, Religion and Spirituality

This is my latest book. Actually, it is a compilation of the blog posts here, but I have included my own notes at the end of each post. In these notes, I share what was going on at the time, expound on the post itself or share personal anecdotes that are relevant to the posts.

 

You can download it here

 

The Christian Aspie: Notes from the Blog

by Stephanie Mayberry

http://www.smashwords.com/books/view/86845

 

If you enter the coupon code EP57M at checkout, you will receive 75% off of the list price. This coupon is good until October 6, 2011.

 

This is a special rate for my blog buddies.

Enjoy!

The Perfect Trap

Tags

Asperger syndrome, Aspie, Christ, christian, Christianity, God, perfection, perfectionist

I like perfection. I understand that many Aspies are this way.

I like to do things perfectly, I HATE to make mistakes or have someone criticize my work (because that means it was not perfect). Even with people, one slip can ruin or the relationship. Once the “perfection” is broken, I have a very difficult time trusting that the person won’t do whatever they did again. I also have a difficult time seeing the relationship as whole again. To me, it is marred. This can go on for years.

In my mind, I know that there is no such thing as perfection in the human world. Only God is perfect. I know that people are human and they make mistakes. I know that one mistake does not mean that a relationship is marred.

But it does not make any difference. My brain gets into that loop and I hold to my ideas, my feelings that it is all ruined.

I don’t know how to change that. It has caused some problems in my life. God blessed me with a wonderful husband, though. He is patient and, while there is no way he can truly understand, he tries to understand. At the very least, he accepts.

He gets frustrated with me. I see it, though he tries to keep it contained.

I need perfection; I need to be perfect.

My rational mind, though, knows that that is an aspiration I will never achieve until I am gone from this world, this body.

But still…

I have abandoned projects because I went outside the lines while I was coloring or cut something just a little crooked (yes, this started very, very early – as long as I can remember). I remember being a very young child and having meltdowns because I “messed up” a picture I was drawing or a craft I was making. It would torment me for days afterward.

In school, I couldn’t handle making bad grades so I stopped caring, stopped trying. I only did just what I absolutely had to do because they made me. I still made good grades, but by “checking out” I removed myself from the “game” so I didn’t run the risk of failing. I didn’t have to face yet another aspect of myself that was not perfect.

I think that we tend to do that in our walk with Christ, Aspie or not.

I think that we look at the person on the pew next to us and think that we have to meet their standard, be as good as they are because they represent some level of perfection in Christianity.

Aspies probably have it pretty bad, but I have heard NTs say that they feel as if they struggle with being a “good Christian.”

Sometimes, I think that NTs and Aspies are more alike than we may realize.

Christians may feel “defective” because they don’t feel joy by just being one of God’s children, or because they have thoughts that they shouldn’t or they don’t feel God when they pray.

What they don’t realize is that a relationship with God takes work – just like your marriage, your relationship with your kids, your friendships, every relationship you have requires work, why would your relationship with God be any different?

You find joy by spending time with God on a regular basis. You pray, praise, worship, feed your spirit Godly, good and pure things. A by-product of that is you will have power over the bad thoughts and tendencies. They won’t necessarily go away, but you can control them.

And if you want to feel God, just ask. I will write on this later. If you are interested, I would love to hear from you. It would be from an Aspie point of view, you know.

Joy comes from these things. When you seek God earnestly, He will bless you.

He will help you escape the perfect trap.

I promise.

Special Interest

Tags

Asperger, Asperger syndrome, asperger's, autism, Autism spectrum, Christian Aspie, Christian Living, Christianity for Seekers, living for God, prayer, relationship with Jesus, Special Interest

I did not know that I had a “special interest.” I knew that many people with Asperger’s have “special interests” and they get upset when they can’t pursue it. It is very important to them and they get so involved in it that they forget everything else. They will talk and talk about it, explaining the particular interest in great detail and they often have an advanced knowledge of the interest.

I had heard about it, but did not think I had one. In fact, I was being evaluated by a doctor a year or so ago and he asked me, “Do you have a special interest?”

“No, I don’t think so,” I replied.

When I got home and told my husband, he laughed. I asked if I did, in fact, have a special interest. He said, “Are you kidding me? Take a look at all the books and magazines you have around here. What is the topic?”

Neuroscience, the brain. Oh.

But I have discovered that I have a special interest that I feel even stronger about than neuroscience – analytics.

I am an analyst on my job and I am fascinated in analyzing things. I can take very large amounts of data and organize it, analyze it, in my head. I put it on paper so others can understand (I got really tired of trying to explain things and people not understanding).

On my job, when I was working with people who utilized my strengths (and were nice to me) I would analyze data and do projections, provide analysis for creating plans and help organize projects and determine achievable benchmarks. While I still analyze data to a degree, it isn’t as it once was. I was actually challenged when they had me on the other projects. I still did my regular job, but I did these other projects as well.

I actually felt valued there – no more, though. Those people don’t value me at all. If I dropped off the face of the earth, no one would notice there. Managers, supervisors, leaders, take the time to identify the strengths in your employees and use them. Make your employees feel valued and appreciated. You will get much more out of them. Right now, I am not working to full capacity.

It is hard to work effectively when people are telling you that you are bad and they bully you. You are so afraid of making a mistake or making this person, who already doesn’t like you, even more angry at you, you can’t concentrate effectively on the task at hand.

But I want to talk about my special interest, or, more directly, how it affects me. Maybe you can understand better Aspies and special interests.

When I am working on an analysis, I hate to be interrupted. The books and articles say that we get “upset” when we are not able to pursue our special interest or when we are interrupted.

Well, that is saying it very mildly.

If I am working on my special interest and I have to stop, my mind won’t shift to the new task. It gets locked up like I described in “Stimming and the Loop.” I can’t stop thinking about it and I feel very anxious. My throat gets tight and it is hard to breathe. I also get very irritable. This is because I don’t like being interrupted and I want to continue doing my activity because it comforts me, makes me feel secure and stable.

Most of the time in the world I feel so out of place, but when I am pursuing my special interest I just fit. I fit in the world at that point in time. It is comfortable and secure and familiar. It is hard to make people understand this, though.

The irritability I feel comes from those feeling I have, as I described , when I am separated from my special interest. It is a feeling of disorientation and alienation. I feel out of place again and unsure of what is next. With my special interest, I always know what is next.

Sometimes, all I can do to get relief and stop feeling so anxious is to say, “Jesus, Jesus, Jesus,” over and over. I can’t form a more coherent thought than that. But calling out to Him helps because He calms that storm that starts churning inside. And I am always accepted by Him. I always fit and am never an outcast with Jesus.

There is comfort there. Jesus gives me peace. He can give you peace too, all you have to do is ask Him for it.

Stimming and the “Loop”

Tags

Asperger syndrome, Aspie marriage, Autism spectrum, Behavior, Christianity for Seekers, Coping (psychology), sensory issues, Sensory overload, sensory processing disorder, Stimming

 

I printed this and hung it in my office. At work, a lot of my days are “stimmy” days.

Stimming is a term used for self stimulation, something we Aspies know well. Stimming can include behaviors such as rocking, talking, making noises, hand flapping, slapping (own legs, face, etc.) and any other number of other things. It is a way to manage overstimulation.

Today I am chewing gum, lots of it. Chewing gum helps to keep me from more disruptive stimming. I have a lot of thoughts in my head that are troubling me. Some things are going on in my life that are upsetting. My husband is great, but sometimes I wish I had a friend to talk to, a female friend.

But I don’t so I just do what I can. I rely a lot on my husband, but sometimes I am afraid it is too much. He never says anything and he is always loving, understanding and tries to help me. But I still worry.

One of the things that causes a lot of problems for a lot of Aspies is the “stuck thought.” My husband and I call it “the loop.”

Sometimes a thought will get into my head, my brain and it will get stuck. All I can do is keep asking questions and talking about it. Usually it is an upsetting thought or a worry like someone rearranged the furniture or someone I love is ill.

When this happens, my brain feels like it is clenched, like there are gears in there that are grinding like a machine that is locking up. I feel locked up.

My head starts to hurt and it is hard to breathe. I feel trapped by the thought, stuck. My head and throat feel tight and all I can think about is that one thought. I feel helpless, frustrated and scared, out of control. I want to run away, get away, go far away.

But I can’t run from my brain. Wherever I go, it goes with me and so does the thought.

The only way to change it is with my anxiety medicine (which I HATE) or for someone to redirect me. Sometimes prayer works, but often I can’t focus right to pray about it, I wind up repeating what is in my loop. Sometimes, though, I can pray and ask God to break my loop and He does. Other times I just say “Praise God” or “Thank You Jesus” over and over until the loop breaks. But it is better when someone redirects me. I guess we all need help sometimes, otherwise God wouldn’t have made us so dependent upon each other.

I think needing help and receiving help from someone strengthens the bond between those two people. I think this is especially important for Aspies because a lot of times we have trouble really bonding with others. My husband and I have actually bonded and are much closer because of my Asperger’s and all of its quirks. Funny how God works like that.

My husband is very good at redirecting me. Redirecting is like changing the channel in my brain. But when I am in the loop, the channel is stuck. He redirects me by saying something to make me think thoughts that are totally different from my loop thoughts.

Say I am looping about my office being repainted. He will say something to make me think about something else, usually something I am very connected to like computers, software, neuroscience or philosophy. He will ask me a question or show me something or ask me to show him how to do something on the computer.

And, click, the channel changes.

He helps a lot because he does not get frustrated. Sometimes he will tell me, “You are in the loop. We gotta get you out of it.” Then he says something to change the channel.

Sometimes if it gets really bad, though, I have to take my meds – but I only take half. I don’t like that fuzzy, drowsy feeling. There is another medicine I took some time ago, but it gave me “brain zaps” (feelings that my brain was getting an electric shock). So I quit that medication. I don’t like taking anything that is going to alter my perception or ability to function.

Stimming helps and redirection helps.

Do you ever get in the loop? What does it feel like to you? How do you manage it?

I Always Fit Perfectly in God’s Family!

Tags

Asperger syndrome, Autism spectrum, Christian Aspie, Christian Living, Christianity for Seekers, church, church family, family, living for God, Neurodevelopmental, prayer, relationship with Jesus, Religion and Spirituality

Somedays I feel like I am in a world that doesn’t quite fit, like shoes that aren’t quite my size. I can still get my foot in them, but they pinch and hurt and are uncomfortable.

That is how it feels a lot of the time here.

Somedays I feel like they (the NTs) are the aliens, but then I look around and see this world that feels like a hologram and I realize that I am the alien.

I walk past people and they look right through me as if they don’t see me. I move through crowds and it is as if I am not even there – or they aren’t because I move through so easily. I feel like I am in a world that is one big hologram and nothing is really real, the people, things, nothing.

I can hear them and see them, but there is no connection to them.

I am not talking about that “dream feeling,” I get that sometimes too. I think everyone does. It is a dissociation and is often related to stress. This is different and I have felt it my entire life.

When I do talk to people and they look at me I don’t know what their expressions mean. Do they wish I would shut up and leave them alone? Do they want me to quit talking? Do they think I am boring? Do they think I am interesting? Do they think I am strange? Do they think I am a waste of oxygen who does not deserve to live in their world? (I have been told this before – I just don’t know if it still applies)

One event can change the whole course of my day, my life. I don’t think people understand that aspect of Asperger’s. Then again, I don’t think people understand much about Asperger’s at all. There’s some good information out there. I found a link to a list of characteristics of Asperger’s. Some of the things relate to children, but a lot of it applies to both children and adults. If you ever wondered, this is a good list. Autism Characteristics

My husband is very good to me. He tells me that I am the best thing that ever happened to him. He says I am better suited to him than anyone he has ever known – and he says that he believes it is at least in part due to the Asperger’s.

He says that communication is never an issue between us because I always say exactly what is going on and what I am thinking and feeling. He never has to wonder like so many men do with their wives. He has gotten used to the candor, the complete honesty.

He has also gotten used to the meltdowns and frustration I experience. He helps me deal with it and says it is worth it and he doesn’t mind dealing with it. He likes to help me.

He likes that I put God first and have asked Him to kill the part of me that is of this world so that He can live in me and I can be like Him. He appreciates my commitment to God first, not church first or anything else.

My priorities: God, CW, Family, everything and everyone else.

So, I keep reading my Bible and learning what God wants from my life. I keep praying and keep communicating with God and listening to what He says to me.

Because no matter how different I am, I always fit perfectly in God’s family.

Understanding Overstimulated – Heading for a Meltdown (a big one)

Tags

Asperger, Asperger syndrome, autism spectrum friends, Behavior, Christian Aspie, family, friends, sensory issues, Sensory overload, social issues, Social skills

I guess there are some things you should know about me.

I am a human.

I am a human with a neurological disability (yes, some days it is a disability) that lends itself to sensory overload which can be overwhelming.

Couple that with limited coping skills (also stemming from elements of the AS) and you have a recipe for disaster.

I try to follow God and do what He wants. Sometimes, though, I can’t see anything because the world is blocking my view with too many sounds, smells, lights, people, sensations.

The past few weeks have been the worst.

First, you need to understand, once I go into sensory overload in one area all the other areas become amplified. If you have Asperger’s you probably understand this. I guess if that is the case, know you are not alone.

If you don’t have Asperger’s, I would like to try to explain to you what sensory overload feels like.

I will give you my situation.

More than two weeks ago, they had repainted all of our offices here – including mine. That meant I had to disrupt my routine to pack up everything in my office so they could move it out to put in new carpet and paint. These were the issues:

1. The carpet has changed – it is different
2. The carpet has lines (which I like) but one panel of carpet has lines going one way and the panel next to it has lines going the other way. It is terribly chaotic and makes my head hurt because my brain can’t find the pattern in it, make sense of it. I have to look at it every day, all day.
3. The walls are different, a different color. They are pretty, I guess, but they are different. I have not adjusted yet.
4. The windows were tinted. That in and of itself was yet another change to my space. But there is more to the story on that.
5. When they moved everything out to paint and do the carpet, they moved my desk. When I came in the day after, my desk was approximately four inches further back than it was before and it was pushed flush against the wall. I could not get to my plugs to set my computer and phone up.
6. A new team lead started at work. She seems nice enough, but she questions everything I do. It makes me feel like she thinks I am retarded or stupid. (Is retarded not politically correct? I don’t know, don’t understand that stuff)
7. One night after I went home from work, the work people came back into my office unannounced and moved some of my things around, including messing up my files so I am having trouble finding what I need. I was gone and they just came into my private space and moved my things. It was very upsetting.
8. My daughter said she was moving back in with us and we picked her up. I was adjusting to her living with us full time.
9. I went to the doctor for some medical tests. The tests were very stressful and made my head hurt.
10. My daughter decided that she was not going to stay with us and she left – only leaving a note. We had tried to make things as easy on her as possible. We had made plans to help her get a job, save money, get her license, start driving, get a car and get out on her own so she could be independent. But she didn’t want what we had to offer – she didn’t want me.
11. A woman who I thought was a friend at work suddenly stopped talking to me on Monday. I had no idea why. She wouldn’t talk so I sent her a text asking if she was OK. She didn’t answer so Tuesday I left a note if she was upset about something? She wrote back that I had hurt her feelings. I have absolutely no idea what I did to hurt her feelings and she won’t tell me. She still won’t talk to me. I have thought and thought about what I could have done but I can’t think of anything. I just don’t know. I guess it was just another stupid Asperger’s mistake – that is the best I can come up with.
12. I went to church Wednesday hoping to feel something, to be uplifted to feel God move, but I felt nothing – nothing at all except that my legs bothered me (I’ll explain that later) and I could not sit still. I don’t know if at that point I was too overwhelmed, if there were too many people moving about, if it was the dynamic of the place, the things going on, the lights, the sounds, the smells or just everything. I was already way overwhelmed and trying to act “normal” makes me feel even more overwhelmed. But I think I managed to make people think I was OK. There was a puppy there and it licked my fingers when I petted it. That was the most relaxing part of the evening.

I am trying my best to live in a world that is so frustrating and overstimulating and loud and scary and it seems that there is no quiet, dark, safe place to decompress and come back down. I feel like I am judged everywhere and everyone is trying to tell me I should just snap out of it.

Believe me, if I could, I would. I just need the world to go away for a little while. I need to be somewhere SAFE and dark and quiet and accepting. Right now I don’t feel accepted anywhere. I know it is because no one understands me – how can they?

But right now, I am just so overstimulated it is affecting everything in my world. I am depressed, distressed, discouraged, unfocused, afraid and alone. I don’t need any more stress, any more stimulation. I don’t need people telling me to snap out of it or pray or anything. I do pray and God understands where I am. He also understands what I am going through.

No humans in my life understand that.

Overstimulation or sensory overload is a terrible place to be. It piles up more and more and more until you feel crushed, suffocated, drowning.

Right now my clothes feel like sand paper (the only thing I am comfortable wearing is my favorite top and skirt – the softest and most sensory friendly but even that is beginning to feel too scratchy on my skin).

Right now, lights are too bright. I wish I had sunglasses so I could look at my computer screen without feeling as if the light is bullets or spikes penetrating my brain. My office lights are off.

Right now, noises are too loud. I hear every converstion outside my office (even in other offices), every voice, every cough or sniff, the cars passing on the street outside (even though I am four stories up), the AC in the office next to me running (I had to turn mine off for now – too loud). Even my fingers tapping these words makes me feel as if my ears are going to bleed – the noise is offensive and overwhelming.

When there are several noises at once my brain tries to pay attention to each noise individually. This is really bad in places such as church when the pastor is preaching while the musician is playing music because my brain wants to focus solely on the words AND focus solely on the music. When everyone starts praying aloud it gets worse because then my brain tries to focus on each person’s individual words as well as the pastor and the music. It is too much.

NO!! The maintenance man just turned on the vacuum cleaner. Even on my best days I can not tolerate the noise.

Right now, I can smell the different perfumes and colognes of the people in nearby offices, the new paint (still), the new carpet (still), the cardboard boxes and paper and files that are in my office, my unscented hand lotion, someone’s food that is heating in the microwave across the building, the heat from my computer monitor…

I know I am in a meltdown or maybe already into a shutdown. I have learned to control the effects somewhat when I am around people, but when I am in my office or alone at home, I am free to rock and stomp my feet (my legs feel like the blood is pooling in places inside my legs and that bugs are crawling under my skin: sometimes it feels like uncomfortable tickling like ants but other times it is like huge slugs slithering under my skin and it is very painful, sometimes agonizing – stomping helps). I can put my hands over my hears and squeeze my eyes shut. I can toss my head back and forth and throw my body back and forth.

Bigger movements are the only things that really bring relief for this level of stimulation, but I have to be alone to do it because humans just don’t understand.

My husband has seen some, but he hasn’t seen anywhere near all of it. He has never seen me self stim when I am at this level of sensory overload. I have to control it around people because I don’t want them to be alarmed or upset. It is so hard to control sometimes but I do and it builds and builds and I get like this: depressed, distressed, discouraged, unfocused, afraid and alone.

I wish I could get on my little trampoline and bounce.

I am going to get something to eat.