Autism Acceptance Day 2017

Helping people with disabilities has always been a passion of mine. I’ve worked with children with various disabilities, but the ones with autism always stole a piece of my heart. I felt as if I saw a little bit of me inside them. Little did I know the reason I felt so connected.

 

I have autism.

 

I’ve been hospitalized 11 times in the last six years for mental health reasons. Depression and anxiety was always my diagnosis until my hospitalization in my freshman year- and only year- in college.

 

The psychiatrist said that he noticed some signs of Asperger’s Syndrome and suggested I got tested. Over winter break, I went to a testing psychologist who had my parents and I fill out questionnaire. I also had IQ tests done.

 

When I went to get the results, the psychologist said that I definitely was on the autism spectrum.

 

My parents said that the had wondered if I was on the spectrum for a while. They noted poor eye contact, difficulty with social cues and taking things too literally. After the questionnaire, it was revealed that I had many other symptoms.

 

I never suspected that I had autism. All of the people I had worked with or had seen on television were a lot different than me. I’m not nonverbal. I don’t wander away from my family. I am able to communicate.

 

However, I do have autism. There is no one way everybody expresses their symptoms. I have trouble with sarcasm, but another autistic person might be able to laugh along. I wring my hands and rock side to side when I am stressed, but someone else might flap their hands. Everybody in the world is different, and that is the same with autism.
As it is Autism Acceptance Day (April 2, 2017), it is important to know that there is no one face for autism. Everybody on the spectrum deserves to be accepted, no matter their ability. We might be easily spotted, or we might look like just another person in the world. In fact, that is what we are. Just another person in the world. No matter our ability, we are human, just like you.

I Thought It Was OCD

If I asked 100 people what they thought of when they heard the word Asperger’s, at least 50 would use the word obsessions in their descriptions. They’d say our obsessions are weird or in a nicer word, unique.

 

I know I have obsessions like they are thinking of. Legos, Deadpool, Comic books, they have all been on the train of my obsessions, running through my head and driving out. I get stuck on these topics and can’t think of anything else.

 

Well, that’s not exactly true. I can think of other things. They aren’t always very pleasant things.

 

My obsessions can be downright scary. I worry that I am going to do bad things to people. For example, I’ve pictured myself pushing my sister down the stairs. I would never do it, but it plagues my head a lot. I also worry that the house is going to catch on fire, or someone is going to break in. I worry that I am going to get an illness. Worry, worry, worry is 99% of my brain.

 

These obsessions don’t come alone. Oh, no, they come with compulsions. I won’t step on cracks. If I hit one arm, I have to hit the other one, or it feels fuzzy. Every time I touch the trashcan, I have to wash my hands or I won’t be able to focus on anything else. I sometimes do it several times, going back and forth between the trashcan and the sink. There is much much more.

 

When I was in my first hospital, I told my therapist about these struggles. She then asked me to tell her how many tiles there were on the ceiling. I do count sometimes, but this was not one of the moments. I told her that  didn’t know, and from then on, she dismissed my problems. She wouldn’t believe me, which hurt me. I knew I struggled with it, and she wouldn’t listen.

 

Years have gone by, and I never received any treatment until I got to my current psychiatrist. He tried an antidepressant  that was supposed to help with obsessive compulsive disorder. All it did was send me into a severe manic episode.

 

After a while, I got diagnosed with Asperger’s. I’ve been told that Asperger’s has symptoms that fit in with other disorders. It makes my attention span very small, sort of like attention deficit disorder. It also can include obsessive compulsive tendencies. It seems that  I’ve gotten all the parts of Asperger’s.
I’m glad I know now, because now people know I am not exaggerating. People are trying to help me now, and I am learning how to help myself. I might not have OCD, but it is part of my disorder. It is hard to deal with, but I’m working on it and trying to find ways to help battle my struggles. It’s annoying to have a disorder that contains so many other symptoms, and to tell you the truth, I in no way enjoy it. I hope that I can keep receiving help, and I will learn how to help myself.

Why It’s Hard To Treat Bipolar and Asperger’s

It was recommended to me that I write a post about how Asperger’s syndrome and Bipolar Disorder van be comorbid. As a person who lives with both, I couldn’t pass up this idea.

To tell the truth, I didn’t really know how the two connected. I’ve done some research, but not enough to remember what I read. After this person asked me about the two’s connections, I just had to look it up.

According to Merriam-Webster’s site, here are definitions for both Asperger’s and bipolar

Asperger’s Syndrome- a developmental disorder resembling autism that is characterized by impaired social interaction, by restricted and repetitive behaviors and activities, and by normal language and cognitive development —called also Asperger’s disorder

Bipolar Disorder-  any of several psychological disorders of mood characterized usually by alternating episodes of depression and mania —called also manic depression, manic-depressive illness

These might not sound like they have much in common, but there is much more to it than a simple definition.

My psychiatrist told me the appointment after I got diagnosed with Asperger’s that bipolar disorder and Asperger’s is one of the most difficult combination of disorders to treat. He didn’t explain much after that, but after some research I found out why. Asperger’s and bipolar have many overlapping features. People with Asperger’s can have suicidal ideation, anxiety, and poor social functioning amongst other symptoms. This can lead to diagnoses of schizophrenia, anxiety, or bipolar. I live with Asperger’s, but bipolar is in the mix as well. My doctor often says my problems are caused by my bipolar. He has never said that I am having problems with my Asperger’s. I believe he is untrained in the autism field, but he is often right about what mood state I am in. I’m not sure myself if it is my bipolar disorder or Asperger’s causing the problem.

 

Bipolar can start out in childhood along with Asperger’s, and it often comes out with other disorders, sometimes misdiagnosed. I have been diagnosed with anxiety, depression, OCD, borderline personality disorder, childhood schizophrenia, and schizoaffective disorder. These were all taken away at some point and were replaced with Bipolar 1 (mania and depression, as opposed to hypomania and depression which is bipolar 2) and Asperger’s. Schizoaffective disorder, which is basically schizophrenia and bipolar together, was the reason I was asked to get tested for Asperger’s due to the same features, such as poor social skills and other symptoms they share.  After I got diagnosed with Asperger’s, I was told to watch out for Schizophrenia as I age, but bipolar has stayed. The many diagnoses came from the two being so hard to diagnose, especially together.

Another symptom that is often misinterpreted between bipolar and Asperger’s is thoughts of grandiosity and unusual thoughts. In bipolar, grandiosity is the thought that one is superior and can do anything, such as write the Great American Novel in two weeks. People with Asperger’s might believe they can be liked by everyone or make everyone stop being mean to them. These are not grandiose, but can be seen as extreme thoughts.

Sensory issues can also come with the two. Asperger’s is known for this symptom, but during a manic episode, the senses can be heightened. Light and loud sounds can be difficult. Even a light touch can set someone, either bipolar, Asperger’s, or both off. I experience this mainly because of Asperger’s, but it is very clear that it is worse during mania and meltdowns occur much more often.

This was not found in my research, but I believe that both mania and depression have things in common with Asperger’s.  For mania, a person might obsess over their ideas more. Our minds race more both in mania and Asperger’s. Asperger’s tends to contain obsessions that take up life. A person in mania will also obsess, but it can go to a dangerous level and lead to dangerous activities. Both hyperfocus on one or a couple of things. In comparison, depression and Asperger’s have lack of social skills and lack of concentration, I have an extremely hard time concentrating all the time, but when depression hits, I know I will in no way be able to concentrate.

As I did research, I realized why it is hard for doctors to diagnose and treat both Asperger’s and bipolar. I have a hard time figuring out the differences myself, and I’m living the symptoms. Hopefully doctors start having an easier time so patients can get the proper treatment. I’m still hoping for the proper treatment. Bipolar and Asperger’s are tough to treat, but they are also hard to beat. Dealing with it is tough, but with proper medical care, hopefully relief will be found soon.

https://cpementalhealth.biomedcentral.com/articles/10.1186/1745-0179-4-2

 

http://www.webmd.com/depression/guide/major-depression
https://www.semel.ucla.edu/champ/blog/dmiklowitzuclaedu/mania-vs-aspergers

A “Typical” Day In My Life With Asperger’s

Asperger’s is anything but typical, but it also doesn’t define a person. Our lives are different, so therefore, our days are different. Here is a ride through a Sunday in my life as someone with Asperger’s:

8:45 AM– I wake up, ready for a good day. Then I remember I have to go out somewhere. Church usually, and then lunch with my family. A normal schedule, and I am used to it, so all is good.

10:00ish AM– The choir comes out, sometimes a few minutes late. Those few minutes deeply matter to me, and I am anxious until they finally come in

10:15ish AM– I start to get distracted. My mind goes off into it’s own world until I pop back into reality. Then I sing and read along with the service

11:00ish AM– Church is over. I dread the gaggle of people who are going to talk to me and touch me. I don’t know when I am supposed to hug them or shake their hand. I just know that I don’t want to be touched. I try to keep up the conversation with people, but let’s face it. All I can say is “Yes” and “Thankful”, no matter how well I know the person.

11:30 AM– We are out to eat with my grandparents, either at Cracker Barrel or a sandwich place. I am anxious because of the loud noise and many different smells combining in my nose. I handle it most of the times, but sometimes I zone out.

12:15 PM– We are finished eating. I have food all of the table, my clothes, and my face. I’m messier than my 11 year old sister. I’m probably messier than a six year old child. My mom promises to stain treat my clothes when we get home.

12:30 PM– We are in the car, either heading home or to a store. I like both, but some stores are very stimulating. I prepare myself and often do very well in the store.

2:00 PM– I am at home, either working on a project (such as writing or Legos) and am very immersed in my task. Well, most of the time. Sometimes I keep getting distracted, but if I’m really interested in it, I can pass by 4 hours without realizing it.

5:30 PM– My mother calls us for dinner. Another mean, another mess.

7:30 PM– Back on with my projects, probably for another few hours

10:00 PM– I wait until the clock says 10 and start to get ready for bed. This hasn’t happened recently due to insomnia. I take my blood pressure, even though I know I’m going to take my medicine even if my pressure is too low. Then I take my medicine. I kiss my mom and dad. I make sure “I love you” is the last thing they hear each night, and if it isn’t, I worry that I will die and that won’t be the last thing they hear from me.

Goodnight.

Wait a minute…this schedule is all very true, but my day is very typical to people without Asperger’s  as well. Here is another version of a Sunday in my life as a person with Asperger’s

8:45 AM– I wake up, ready for a new day. I know there are several things happening today, and prepare myself for them.

10:00ish AM– I wait in church, a little anxious, but anticipating what should be a good church service. My pastor is great.

10:15ish AM– I start to zone out, but I bring myself back. Everybody zones out once in awhile. Sure, I might do it more, but it doesn’t make me strange.

11:00ish AM– Church is over. I am anxious about talking to people, but I am excited to shake my pastor’s hand and have him praise me on my blog, or something else I’ve done recently.

11:30 AM– We go out to eat. It is loud, bright, and odorous, but I take in my food and enjoy every bite. I focus on the details and fully appreciate my meal.

12:15 AM– I am messy, so I clean off the table and my face. I try to leave the table as neat as I can. My clothes are messy, but they will be cleaned when we get home.

12:30 PM– We either head home or to a store. If we go to a store, I use my sensitivities to my advantage and try to look at each item intently and pick out the best ones I can.

2:00 PM– I get involved in a project or activity that I enjoy. I do it because it is fun, and it makes me happy. Simple as that.

5:30 PM– Mom calls us to dinner. I make another mess, but clean it up.  Dinner is delicious (as always). I clean up my plate but often leave the cup behind.

7:30 PM-Back to the projects!

10:00 PM– I go through my schedule, on a regular night. I kiss my parents and tell them I love them. I go to sleep happy and ready for another new day.

Goodnight
See! An Asperger’s day can be hard, but worded differently, but still in a completely true way, it can be similar to an “average” person’s. We are different. That is a fact. However, we are also very similar to an “average” person. In fact, there is no average person with Asperger’s, but there is also no average person. Our days are different, but aren’t we all?

Yes, Asperger’s Is Hard

Asperger’s is deeply misunderstood. While it is on the autism spectrum, it is not like classic autism. People with it don’t show severe symptoms and it is not always visible to untrained persons. However, it is a real disorder.

I am one of many people who lives with Asperger’s Syndrome. A lot of cases are not diagnosed until later in life because it is not as obvious to professionals or families. Sometimes it’s not even visible to the person themselves. I knew I had some quirks, but wasn’t sure if I had Asperger’s.

Asperger’s and being quirky are not the same thing. Many people think that really smart people, or people who don’t talk to others, are the people who have Asperger’s. I’m here to tell you that it is way more than that.

Asperger’s is looking at someone’s forehead or just looking down to avoid eye contact.

Asperger’s is melting down in an ice cream shop due to loud sounds, strong smells, and too many people.

Asperger’s is wearing headphones into a store and turning the music up louder when you hear thunder roll.

Asperger’s is being told “It’s a joke!” over and over and still not catching on.

Asperger’s is freaking out because you were told to get some place at four o’clock but arriving at 4:01.

Asperger’s is falling so deep into an obsession that you can’t think of anything else and most everything you say is about said obsession.

Asperger’s is thinking someone is mad at you, but they are really just resting their face.

You might think “Wow! It must be awful to deal with that.” My answer to that is, yes, it can be awful, but not all the time. Sometimes Asperger’s leads me to be more insightful of  small details. It gets me to be more than punctual EVERYWHERE I go, unless I have someone poking behind. It’s having a passion and being active in your life. It can even mean that you are above average in intelligence.

Yes, Asperger’s is hard, but everyone has a struggle. We are all different, and while Asperger’s makes some things harder, it also can make life better.

.

Asperger’s and Attention

I’ve always had a hard time paying attention. This is strange, because I was an A student during my high school years, and was an average student in the semester I was in college. Just because I was a good student doesn’t mean I didn’t have attention issues.

I was looking up something on the internet. Specifically, I was researching what a trumpet player was called because of a family discussion. When I got to the search engine, I typed in “what is a” and then saw several jokes and drifted off into a joke website. I laughed to myself for a while. My mother then asked a little later if I had looked the trumpet question up. I sheepishly answered no. She then asked me if I had gotten distracted, which I answered yes.

By the way, a trumpet player is called a trumpeter.

While I got good grades, I was extremely easily distracted. One of my teacher had band posters on his wall, and I would start thinking about the songs by the band. Then I’d start thinking about other bands and start singing songs in my head. If I heard a person walking down the hallway, I’d start wondering where they were going.

I also zone out a lot. This happened in most of my classes, but I was often able to fill out the blanks when this happened by looking in my text book. Textbooks were my best friend. My mom also helped me in math a lot, as she teaches it. When I was in math classes, the teacher did not have time to break things down for me. I would go home and have my mom explain the math and break it down into steps that made more sense to me. I ended up with A’s in math classes because of her.

I also took longer on tests when I took them. Whispering, pencils dropping, and just simple daydreaming took my mind away from the questions. Luckily, with an IEP in high school and disability services, I was able to go elsewhere to test. In high school, I went to a special education room to test, and in college I either went to a quiet classroom or disability services. It helped me finish much faster because the attention issues eased up a little.

It’s not only in school. I just asked my mom what distracted me. She answered in less than a second “Everything”. I guess that pretty much sums up my experience.

I was wondering why I had this struggle. I had some tests done awhile back, and was told that I didn’t have ADD or ADHD. However, I was also diagnosed with Asperger’s at the same time as the tests. I decided to look up if Asperger’s caused poor concentration. The answer is YES. Many people with Asperger’s have severe concentration issues. This helped explain it to me. I have had the concentration issues my whole life, but I didn’t realize it had Asperger’s until several months ago.

Now that I am out of school, distractions still keep me from being fully present. I will be in my own world while someone asks me a question. A person might come up to me and say hello and my parents will have to get my attention so I greet them back.  I also will be talking, but then see something and comment on it. I then forget what I was talking about,

It sucks to be inside of my head most of the time. I was on medicine to help with these issues, but due to worsening mania, my psychiatrist took me off of it. I miss it and being able to see and hear the world clearly. It helped me block out random thoughts. Hopefully I can work on having that happen without medication.

Asperger’s has it’s bad side. People tell me I am smart, but not being able to be fully present stops that from showing sometimes.

It is hard but- *starts singing along with the radio*- wait what was I saying?
Oh yeah, It is hard, but I’m working on it, and yes, the singing thing happens more often than you think.

Obsession With The Pool Guy

Obsessions are a symptom of Asperger’s that I have not heard others talk about too much. However, it is a big deal for me.

When I say obsessions, I don’t mean obsessive compulsive obsessions. I also don’t mean liking, or even loving it. It doesn’t mean that I casually think about it or occasionally bring it up in conversation. It is more than that.

I had been wanting to watch Deadpool for a long time before I finally bought it. I have already written about how it helps with mental health. It really does, and makes me happy each time I watch or read about him.

I don’t just read or watch it now. It has taken over my life. It is the main part of my brain now. Every conversation with me contains at least three references to him. I have had to learn to stop myself before I say one. Sometimes, it doesn’t work. My mouth opens and either a quote or a long story about how something in the comic or movie relates to the current situation. I have probably annoyed my family, but they take it well, either saying okay or laughing.

It also affects my wallet. I have spent over $50 on Deadpool comic collections. I’ve also bought $30 worth of movies, one Ant-Man (which I highly recommend) and the other an X-Men movie I haven’t watched yet, and $20 on a 3DS game, just because they are Marvel and I want to learn more about the company. $100 might not seem like careless spending, but I NEVER buy anything fun for myself over $20.  I am falling more in love with Marvel and especially Deadpool more and more these days.

The movie “Deadpool” has been played seven times in the last two weeks. It is the main thing I have watched when I have time, except for Ant-Man, and a few episodes of whatever my mother is watching on television. I really don’t have enough time to watch a lot, and Deadpool is always at the top of the list. I am able to know what is going to be said next at many parts of the movie, and find the quotes slipping into my daily vocabulary.

I have had many other obsessions over the years. Recently, the song “Youth” by Troye Sivan has been up there. Some days it was the only song I listened to. Before that I had a SERIOUS obsession with One Direction. They were all I listened to and talked about. I knew everything about them and would tell you whatever I thought was interesting, even if you weren’t interested.

Imagine finding something. It could be anything, such as a movie, book, band, subject, or many other options. You find out about it. Then you start learning about them. Eventually it turns to your brain being filled with what you love and it becomes one of the only things you can think about. You can physically feel tingles when you talk about it. You think people care about it even when they don’t. Words about it come out even when you are somewhere inappropriate. For example, I went to fill out paperwork for my job. Something the human resources lady said made me think of one of Deadpool’s repeated lines “maximum effort”. I whispered it to myself. Nobody heard me, but i know I should have kept it to myself. Hopefully I don’t say anything to get weird looks (of course, I think every look is a weird look pointed my way).

When obsessions take over my life, it is hard to keep my brain focused unless it is on the movie, book, or anything else Deadpool/Marvel related. I need to try to stay grounded instead of allowing my head to float up to Marvel-land and stay in the moment and not reenact every scene in the movie in my head.

“Till next time, this is your friendly neighborhood pool guy, singin’ ‘I’m never gonna dance again, the way I danced with you’”

NVLD v. Asperger’s v. Autism Level 2

I am diagnosed with what used to be called Asperger’s Syndrome. With the release of the DSM-5, all autistic disorders are under the umbrella term Autistic Spectrum Disorder. This means that Asperger’s, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS),  and Disintegrative Disorder are no longer used to diagnose people. There is now a severity level system, with levels 1-3

 

Check out this site, for a better explanation on the level system than I could ever give

http://www.myaspergerschild.com/2013/09/the-dsm-5-severity-levels-of-autism.html

 

I am considered to have Autism Level 2, which is considered to require substantial support. I have low levels of social skills and repetitive behaviors obvious to outsiders. I’d say it’s a little more severe than Asperger’s, which most say is level 1. I was also told that once my mental illnesses are under control, I could move down to a level 1.

 

The description for level 2 fits me well as my parents and myself believe. I guess the person who tested me was correct.

 

There is one thing that sticks with me from the meeting my parents and I had with the testing psychologist. She said that at first, she thought I might have a nonverbal learning disability, or NVLD. She said she decided that I didn’t have that, because I was good at math. I had every other symptom of the disorder, but my math skills were better than is found in NVLD. That disorder is like a milder Asperger’s. A person with the disorder often has a hard time with body language, is clumsy, and difficulty with motor skills. To see all of the symptoms, visit

http://ldaamerica.org/types-of-learning-disabilities/non-verbal-learning-disabilities/

 

I took the GADS, or Gilliam Asperger’s Disorder Scale, which asks about social skills, sensory behaviors, body and object use, among under sections to give a number of severity, between 0-3, with 3 being the most severe. I peeked at my parent’s answers, and was surprised. I expected their answers to give a lower score than I would on the form. When I looked at their answers, they showed a much higher final score. My score got me an Autism Level 1, while my parents answers got around an Autism Level 2 or 2 ½  for me. I turned them into the psychologist testing me, along with tests for ADHD and anxiety/depression. She gave me an IQ test. One of the tests was called the Kohs block test, where I had to make the design with blocks that had different designs on them. I was terrible at it. I skipped many of them, because I couldn’t figure them out, and I eventually told the person administering the test that I couldn’t do it any more. She timed me on each one and wrote it in her book about me. Then she gave me tests where I had to tell her what different figurative language phrases meant. I was even worse at this. She often asked me to go further in my explanation, which I could not do. Math problems were the easiest part for me. All I had to do was answer single digit addition, subtraction, and multiplication problems until the timer ran out. There were other tests that I do not remember as well.

 

The final session occurred the day after we got back from Disney World. This time, my parents came in with me. The psychologist started to tell us the results. She told me that I did not ADHD, but I definitely had and ASD, in which both disorders can cause inattention. I have an extremely hard time focusing on anything for too long. I had low verbal comprehension, perceptual skills, and processing speed. I did have high working memory skills. All of these results lead to Asperger’s or autism level 2 in my case. She also told me that I had bipolar 1 disorder instead of borderline personality disorder, but that story is for another time.

 

Basically, the level of severity of the three disorders are NVLD, then Asperger’s (although it is technically not a disorder now),and then Autism Level 2. The DSM changes things all of the time, and people are very upset that Asperger’s, Disintegrative Disorder and PDD-NOS are no longer their own disorders on the autism spectrum, and are now all labeled as Autism Spectrum Disorder or ASD, with  the levels. This means that previously diagnosed kids had to retest because of the different criteria.

 

Testing for ASD is not fun, but it does teach you more about yourself. Whether you have NVLD or a level of autism, it helps you find resources to help you. My parent’s had wondered if I had Asperger’s for a while. The therapist and psychiatrist at one of my recent hospitalization suggested I get tested. My psychiatrist on the outside agreed and helped us find a good testing psychologist. The knowledge of your disorder can help, even if you didn’t realize that you had the symptoms at all. If your child has any symptoms, and is having a rough time, whether it be a NVLD or are any level of autism. , it could be helpful to look into an IEP for school, and if needed occupational and speech therapy.

 

Finding resources for any of the disorders is harder as an adult, as I know. There are less social skills groups or therapists for adults. I have no options near me that don’t charge $400 for a small number of once a week social skills group and takes my family’s insurance.There are also no adult occupational therapists that could work with me. With more people getting diagnosed with any of the disorders as an adult, you would think there would be more options. We didn’t get help when we were younger because we were not diagnosed.

 

All of the disorders have similar symptoms, and can be hard to tell apart. Make sure that the person diagnosing you has a good reputation due to their former diagnoses of people.
Any developmental or learning disorder can be hard,  but they do not mean life is over. It might mean that you need extra help that no one thought of earlier, but getting that help can change your life in a positive way. I am now finding techniques to help myself, and I am getting other suggestions all the time. A diagnosis is not a dead end. It is the start of a wrong turn turning into an opportunity to find a better way to get to where you are going.

Asperger’s Is Real

I’ve talked about the negatives and positives of Asperger’s. I try to show people the good side of my neurodivergence and how I am handling it well. If I write about a negative, I counter it with a positive.

The truth is, Asperger’s is a jerk. Sure, it helps with some things, but it makes my life extremely hard at times. I don’t want to lie to you all and say I am okay with it. I am not.

I have dealt with it my whole life. Every day, every second of my life is consumed with it. Even when I have a good day, it is lurking.

People don’t seem to understand that while Asperger’s is not always visible. It is there, and hurts us with it.

I had another breakdown the other night, the worst one yet. It started out as crying heavily. When told to go get a calm down pill, I walked to the kitchen and opened the medicine cabinet. My body basically gave out. I started to knock down all of the pill bottles and I sunk onto the counter, screaming and sobbing harder than I ever had before. My parents came into the kitchen to help me. They found my pill, and I took it. As we started to walk out of the kitchen, I started violently hitting myself in the head with both hands. My father grabbed my hands and we walked out of the kitchen. After I calmed down, we had a discussion.

We talked about how it could be my bipolar, but it seemed like something else. It seemed like my brain is trying to sabotage me. It happens every time a change happens in my life, even if it is a really good one.

This was a true Asperger’s meltdown. It’s raw, dirty, and terrifying. It is the part of the disorder that nobody thinks about. To other people, Asperger’s is quirky. Asperger’s is cute and fun. It is just a term for quiet and unique kids and it is not real.

Let me make one thing straight:  Asperger’s. Is. Real.

The experience above is just one example of a meltdown. Just recently, I had one before going to a softball game, because I did not want to be around all of those people. I’ve had meltdowns many times in my life, due to various reasons. My Asperger’s was quite real at those moments.

Change is a big deal for me. Once I begin a schedule, I like to maintain it. My wake up schedule is always the same. Dad opens my door to tell me to wake and that he loves me. I wake up at 6:25 and get really upset if it is past that time. I shower while listening to the same playlist I always do. I sing along. I get out and put my underwear on. I brush my teeth. I put my pants on, slide my belt through the loops, then my shirt goes on. If I put on my shirt first, I take it off. If I don’t, I am uncomfortable for the rest of the day. Lastly, I go to my grandparents house, where the days are not always the same, which is stressful in a way, but I handle that part okay.

How is it going to feel to have a job? I hope for a set schedule when I know I am coming in, but I know that probably won’t happen. It worries me.

There is so much more than the meltdowns and a fear of change . My senses get overwhelmed a lot. For a minute, I was thinking about not going to the concert  I’m about to attend because of all of the flashing lights. Most concerts have lights, but after seeing Sleeping With Sirens in concert, where they tried to make me explode with the strobe lights constantly going off. I had to turn away from the stage because it bothered me so much. I’ve had to cover my ears at concerts because of screaming audiences. That doesn’t stop me from going, because I love live music, but it is very hard.

Loud, high pitched sounds bother me as well. At a restaurant, there were kids screaming so loud I had to slouch down on the table because it bothered me so much. I don’t know how I have worked with kids and handled it. I often came out of the place I was with the kids, and told my mom that I was not cut out for the job.I loved the children with a passion, but it was difficult

My constant talking about my obsessions annoys people. I can’t tell when they are getting bored, so I keep on talking. I would talk all day if I could. My parents have learned to politely cut me off. What if other people aren’t so polite?

I passed on a higher paying job with more hours because I would have to deal with people a lot more. It was a front desk position. I couldn’t have handled the stress of talking to people constantly. I tried that with my hospital volunteering and hated it. I also had to push wheelchairs of discharging patients. People try to make small talk, which I cannot do. I always ended up talking about myself instead of asking questions. I feel self-centered at times, but guess what?!?! Asperger’s has entered my brain and has taken over.

My lack of sarcasm has led to me being laughed at a lot and being taken advantage of. I’ve had people do things to make me freak out, just because it was hilarious to them. I don’t get jokes a lot of the time. I feel like an idiot when I can’t figure out what the funny part was.  Everybody else gets it. Why can’t I?

I don’t mean to say Asperger’s is a curse, but I am not going to give it a positive side today. It affects every aspect of my life and I hate it. I am so glad for the people who deal with it so well. One hour of being around a lot of people leaves me socially-depleted for days. I’m working on it, and hope that I will survive this life that has been given to me, for better or for worse.

Blue Moon-Beck

I Have Asperger’s: Do’s and Don’ts of Reponding

People on the spectrum are often victims of stigma.  Those with Asperger’s are even less known about. Our disorder is more invisible. Conversation might be hard, but with help the problem could go away.

 

When we tell others that we have Asperger’s, the person might not know what to say or do. Below are 10 things to do when you are confided in, and 10 things NOT to do.

 

DO

1. Thank them for telling you
2. If you don’t understand what Asperger’s is, ASK! Most of us want you to know more
3. Ask us if there is anything you can do to help
4. Be a good listener. It is hard enough to talk about it. The least you can do is listen
5. Let them know if they are too loud. It  gives us a chance to evaluate ourselves
6. Check in on the person if you don’t think they are listening. For example “ Are you with me?”
7. Help them when they need it, but only if you know how. Some might not want you to touch them, while a big hug can help others
8. Know what their triggers are. Schedule changes, sensory issues, a big crowd of people, and so on…
9. Let us know when we are being inappropriate for the place we are at,, and try to calmly to stop us.
10. Try to understand, at least a little bit. You will never understand as fully as we do. That is because you do not have it. It is okay to be confused, but try to least educate yourself.

Now for the Don’t side

 

DON’T

1. Make us feel like less of a person, because we are different. We are ALL different.
2. Treat us like we are children. People sometimes think we need help when we don’t
3. Try to relate to us on an Asperger’s level, unless you actually have Asperger’s. Just relate to us as what we both are, a person
4. Make  a person go to a party or another social event unless are willing.
5. Assume you know what  Asperger’s is, when you actually have no idea. If you don’t want to ask to person, read up on it!
6. Force them to make eye contact. It will come on it’s own with help.
7. Listen to stereotypes and think that all of us do them. Totally wrong. We all have different symptoms from time to time to time and nobody with Asperger’s is the same as another.
8. Act like you are our friends when you really just want to make them feel bad. Many of us easily trust too quickly. Don’t be over the top nice unless you actually intend for us to be friends
9. Expect us to be really good at math or science. Just because we have Asperger’s doesn’t mean we are super smart.  Some of us are excellent at history, music, English, and many more. We are smart in our own way, but  we are not all geniuses
10. Ever, ever, EVER make us feel like a burden. Yes, we might have our difficulties and differences , but we are not someone you can just say goodbye to because we aren’t normal. There is no such thing as normal. We have Asperger’s. You can’t just leave because you don’t want to deal with it.

 

One more Don’t:

 

Don’t go away after reading this, and not use the tips. As a person with Asperger’s I know how tough it can be when people don’t understand.

 

And a Do to balance out the Don’t,

 

Do try to end the stigma surrounding  autism and Asperger’s. Let people know that you or care about a person with either autism or Asperger’s. Share your stories, pictures, and videos that help shut down stigma.

 

We are all different, yet we are the same.

After last night I HAD to fine a DMB song.

Dave Matthews Band- Why I Am