Functioning Labels

Posted: August 18, 2019 in Uncategorized

I’m autistic, and I prefer that terminology or on the autism spectrum. Not high functioning or even Asperger’s, though the latter is certainly preferred. Why? Because “high functioning” undermines my daily struggles and it diminishes the impact being autistic has on my life. In a way, it’s invalidating. I probably don’t fit into most people’s concept of an autistic person because most people are only familiar with a specific type of autism, but we are just as unique and different as everyone else is. I work two jobs, live alone, and drive. And yes, I’m autistic.

I was the baby/toddler in preschool who became distraught when the fluorescent lights flickered, the 3 year old who hummed the Nutcracker opening march perfectly note for note in the back of my mom’s station wagon, and the child who frequently misread social situations and therefore was rejected and isolated. While I may not flap or rock (I’m pretty sure I did when I was really little and was reprimanded for it), I do stim in a more “socially acceptable” and discreet way. In fact, I find myself doing so more now as an adult than I did as a child. Actually, I did rock as a child. All the time. On a rocking dog. That’s right, a rocking dog instead of a horse. And as I rocked, I repeatedly sang Twinkle Twinkle Little star over and over again. It drove my sister crazy. And to make it worse, I had a book with sound that played it, which I used so much it wore out and someone replaced it, must to my sister’s dismay. Escalators used to terrify me and crowds often make me feel very uncomfortable and I need to separate myself for a bit. It really upsets me when a stranger or someone I don’t know well gets too close to me. When I was little, I dealt with this by pushing/slapping people. Obviously as I matured, I developed better ways of handling unsavory situations.

Just because people no longer observe obvious behavioral issues, that doesn’t mean that I’m not feeling horribly uncomfortable on the inside. This past weekend, I had a meltdown over something that upon further investigation was not the conundrum I initially thought it was. But in that moment, when something upsets me, my emotional response is so intense it becomes overwhelming and using logic and thinking rationally (as I usually do) completely goes out the window. The situation traumatizes me and I feel so angry and upset. I cry, I need time to myself and be allowed to feel the way I am feeling and get my emotions out. Sometimes I feel a bit numb afterwards, but eventually that too passes and I can go about my day.

An example of something that most people would consider to be a minor, common event that just happens sometimes is when I was out running some errands and someone hit my car and didn’t leave a note. I was very upset for a few days. Even though the person who hit my car was probably someone who does not know me, it still somehow felt like a threat. It was traumatic, and I had no control over anything at all in the situation. I did, however, add collision coverage to my insurance so it won’t be as bad if and when it happens again. Part of why I was so upset is because the person didn’t do the right thing. I know, often people don’t. I’m autistic. I don’t understand WHY people don’t do the right thing, because that is the only thing that comes naturally to me. With me, there is no other option. This wasn’t just a ding either, but it also could have been much worse. The back panel was dented and paint scratched. They know they hit my car, and they just did not care. I can’t understand that at all because my brain works so differently. Autistic people often get accused of being selfish, but we are not. Quite the opposite actually.

Yes, I am able to work and live independently. I have done so for the past decade. That doesn’t mean I don’t struggle though. I have just gotten good at hiding it and pretending to be ok when I’m really not. Sometimes at work I feel like disappearing into the bathroom to cry for a bit because life just gets overwhelming at times. I’m too stressed, overworked, underpaid, don’t get enough sleep, having a bad sensory day, etc. The LED headlights that are often used these days are painfully bright, lots of sounds are very unpleasant and actually do cause physical discomfort, hot weather makes me itchy, when something is askew with my clothing it will drive me absolutely crazy until I can fix it, etc. Making and keeping friends is nearly impossible because I don’t respond and act the way I am expected to and my social ability is inconsistent. Some days I can “fit in” better than others, but eventually my awkward quirkiness will make an appearance. I won’t understand the point of a joke, for example, the other day at work I was wearing a Clemson shirt. A co-worker walked by and went “roll tide!” I actually don’t follow sports, so I was confused. Clemson’s biggest rival is the Gamecocks, not Alabama. He was referring to competing for the title or something, so I had to explain I’m not a sports person. Actually, I went to Clemson for a year then transferred to a less overwhelming smaller school. My shirt didn’t reference anything sports or team related, it just said Clemson. I mean, it’s a school too that just so happens to have a popular football team.

I find comfort in routine and repetition. I can listen to the same song over and over several times in a row and not tire of it. I have a favorite flavor of certain things that I always buy and don’t get sick of. Sometimes I get so amused by something that I laugh considerably longer than the typical person would, but I just can’t help myself. It baffles me how some people are able to do so much. Just thinking about that kind of life makes me tired. I’m exhausted enough from working and being an adult and can’t imagine adding anything else into the mix. Currently I have no social life because I don’t have the time or energy for it. I work way too much to get a student loan paid off quicker and I just don’t have anything left when the weekend comes, and then I have to take care of stuff that didn’t get done during the week anyway.

I am autistic. Not “high functioning,” just autistic. I’m constantly dealing with daily struggles that others don’t realize. I pretend, I fake it. Or at least when I have the energy to do so. That in itself can be very exhausting and draining, having to be “on” for so much of the day while at work. And no, we are not all “a little autistic” – again, this minimizes and invalidates the everyday experiences of someone who actually is autistic. Autism is a neurological disorder, meaning that the brain interprets, processes, and reacts differently – it is NOT in any way an intellectual disability as some seem to think for some reason. This is probably my most personal blog post yet, and I hope to be able to clear up some common misconceptions and paint a more accurate picture of what having autism is actually like, at least for me. All of our experiences are unique for various reasons – we are all individuals with our own personalities, we were raised differently, many of us have other diagnoses in addition (I also have ADD by the way, so that explains the random thought process at times), some struggle more in certain areas than others, and we each have our own comping mechanisms. When you meet a person with autism, you have met one person with autism.

Modernity Has Failed Us

Posted: June 4, 2019 in Uncategorized

I don’t understand how society determined that “success” is defined by working 40-60 (or more) hours a week at a job which a large amount of the population hates, just to come home and become a TV binge watching face stuffing alcohol drinking zombie because they are too drained from work to do anything else and need to relax and unwind before going to bed just to do it all over again the next day, anxiously awaiting the weekend (for those who are fortunate enough to actually get 2 days off that is). The work day used to be 9-5, but for some reason that has evolved into more like 8-6 for many with an hour for lunch if you are lucky. Let’s be honest though, most people get a half hour or even worse, eat at their desk while continuing to work.

The excessively long hours, lack of adequate breaks, and increasingly difficult to meet demands are clearly not healthy nor beneficial to anyone, let alone someone who is on the autism spectrum. The occurrence of severe mental health issues and addictions these days among the nuerotypical population alone is ridiculous, so can you for a brief moment imagine what it must be like for someone with sensory issues and social difficulties to deal with this sort of lifestyle? Yeah, it’s quite unpleasant and even traumatizing at times. It takes a lot of energy and effort to monitor how you are feeling to avoid meltdowns and shut downs while others around you continuously take things for granted that come naturally and easily to them. But us, we are struggling with and fighting battles internally that they will never know or understand.

To be blunt, society has made it too damn hard for those of us who are on the spectrum to keep up, let alone survive comfortably in a world that is clearly not at all designed for us. The demands and expectations of modern society are completely draining us and stressing us out so much. And some people may not know this, but we are trying. SO HARD. But do people realize that? Maybe sometimes, but mostly we just feel like others think we are less intelligent, slow, inferior, lazy, not friendly, rude, selfish, basically any other negative attribute you can think of out of a lack of understanding, acceptance, and compassion.

The majority of my adult life has been spent in survival mode, and that’s not healthy. Thankfully though, I have gotten better at being more pro-active instead of reactive and am able to notice when something isn’t quite working for me. That way, I can start making changes and manage the issue before it becomes a major problem. Self-care, adequate rest, and plenty of time to do the things we enjoy (as us autistic folks tend to have several pretty intense interests) are extremely important to our overall health and well-being.

Unfortunately though, in today’s society, if you aren’t doing something productive and overachieving all the time, you are seen as lazy. If you look around at society though, I think it’s pretty clear that a mindset like that is not benefiting us at all. Everyone is distracted, driving is becoming increasingly dangerous, we are basically working ourselves to death and allowing too much stress and anxiety into our lives and because of that we are self-destructing. This is no way to live. Modernity has failed us.

 

*The title for this blog is from a line in one of my favorite songs – Love It If We Made It by The 1975

Acceptance Vs. Awareness

Posted: April 4, 2019 in Uncategorized

Since it is April, I wanted to discuss the difference between autism acceptance and awareness (red vs. blue), why it matters, and the impact of both viewpoints on those diagnosed with an autism spectrum disorder. Awareness tends to focus on autism as being negative; it presents the diagnosis more so as a disease that should be cured. Acceptance focuses more on autism as a neurological difference that is no greater or less than any other; it focuses more so on equality between the autistic community and neurotypical society. Clearly the latter is what is preferred by most, or at least those who are aware of these important differences.

A brief PSA before I go any further: most autistic people don’t want to be “cured.” Being autistic is all they have ever known, it’s all I have ever known. To change that would mean completely changing who we are, how we experience the world, how we think. We would not be us anymore at all. That is a terrifying thought to most of us, especially since change tends to be difficult to acclimate. I won’t deny that struggle and frustration are frequent in the life of an autistic person, but despite all the difficulty, what most want is to be accepted and treated with the respect, courtesy, empathy, and dignity that would be given to anyone else who is not on the spectrum.

As for the colors typically associated with the month of April, blue is the color used by Autism Speaks, which is an organization that promotes a cure for autism and is quite controversial among the autistic community for many reasons which I will not get into for this post. The alternative color, red, signifies a more positive approach to accept the differences instead of trying to change them.

Autism is not a disease, it’s an anatomical (yes, they have found actual structural differences in the anatomy of autistic brains compared to non-autistic brains) and neurological differences that affect how outside stimuli is processed and therefore interpreted. Instead of trying to find a cure for something that is merely a genetic variation that has developed naturally through evolution (that’s right, vaccines and GMOs or whatever other crazy ideas some people have as to what causes autism are false and completely illogical), we should be finding cures for actual diseases like Cancer, Diabetes, Lupus, and AIDS. Autism is not the enemy, the people who think it is are.

Selfishness

Posted: February 23, 2019 in Uncategorized

A common misconception about autism that I frequently notice is that people on the spectrum are more selfish than the non-autistic population. I disagree and think this is a misunderstanding and misinterpretation of the methods autistic people tend to use to connect and relate to others. These methods as well as the communication style produced by the autistic brain is seen by the general population as being unorthodox, and therefore, is immediately deemed as incorrect.

In the past, I have been accused of always turning the conversation back on myself by a “friend” in high school. I use quote marks because this person turned out to be very manipulative and backstabbing. These traits were further proven to be true when this “friend” told a mutual friend that I was pregnant the summer after freshman year of college. I have never been pregnant, and I had not talked to that “friend” in several months and we didn’t associate with any of the same people. Obviously her opinion of me is completely void of validity, so the mention of this was intended to make a point that other people’s interpretations are only opinions that don’t necessarily mean anything because often a person’s accusations say more about that person’s character than the one being criticized. This is important to keep in mind.

Since conversation is generally supposed to be a give and take endeavor used to form connections, it seems logical to respond to an anecdote with a personal story or situation of your own that relates to the one that was just presented. But somehow, when you are autistic, this comes off as “always turning the conversation back to yourself” in the eyes of a neurotypical (non-autistic) person. In many ways, it seems that there is no winning for those of us who are on the spectrum. We try, but our attempts are constantly scrutinized under a microscope and we get reprimanded for every little thing we apparently did “wrong.” It is beyond frustrating and extremely discouraging. I can understand in cases where one person is always trying to compete with the other person, as in their situation was much more extreme, but that is not how I am and I find that kind of behavior irritating myself.

Another thing that I have noticed is that most neurotypical people feel the need to talk about themselves – their recent stressors, issues, concerns, etc. first when a conversation is initiated, and if I ever want to speak first because something has really been bothering me or I have something big to share, I am accused of being selfish even when the other person is usually the one who talks first. And then when I do get a chance to speak, it is usually interrupted and cut off then turned back to the other person so that I get much less time to speak compared to the other person. Yet somehow I am the selfish one every single time. Also, I often randomly ask friends how they are doing, either in the beginning of a conversation or just sending a random text when I haven’t heard from them in a while. The people who accuse me of being selfish hardly ever do this, and if they do, it’s always after they have talked for a long time about themselves first. This makes it seems like merely a formality and not genuine interest. So again, I would really like someone to tell me how this qualifies as being selfish.

I have been accused of being selfish several times by different people, some of whom have been in abusive or otherwise unhealthy relationships. Not to say that their selfish behavior in anyway condones abuse or mistreatment, because it certainly does not, but perhaps these people should stop constantly placing blame elsewhere and be more open to the possibility that their behavior and tendencies exacerbates certain situations and that perhaps they sometimes in a way bring issues on themselves. These people who accuse me of being selfish have many times shown obvious signs of being self-centered and made it clear that their own thoughts, needs, feelings, and emotions are their number one priority.

My main issues with interpersonal relationships have been due to intolerance, ignorance, and extreme selfishness. Many people seem to be incapable of seeing things from a different perspective and are so inflexible in their thinking that they can’t seem to understand that some people think and process things in a very different way than they do. As most people on the spectrum tend to be, I am a very logical person and try to look at situations as objectively as possible. When I am wrong, I know it and am able to both admit to it and apologize. Many times when accusations are made against me though, they are falsely made and are more so projection from the other person. I am tired of being persecuted for other people’s mistakes and issues.

I acknowledge that because I am autistic, I do not always communicate in the same ways that other people do. Despite these differences, I don’t see the logic in the claims that have been made that suggest that I am selfish or that the autistic community as a whole is more selfish than the neurotypical population. If anything, I think the majority of the neurotypical people that I have encountered are the ones who are selfish, not me. Perhaps this is just one of the many ways certain types of people target and attack those they perceive as different. Actually, it seems a lot like gas lighting, doesn’t it?

Online

Posted: January 20, 2019 in Uncategorized

If it wasn’t for the internet, I wouldn’t have any friends. Note that this statement is not made with the intention of seeking pity, it is merely intended to point out a reality that many people on the autism spectrum relate to. Friendship is not that easy for everyone, nor does it necessarily happen naturally due to proximity and repeated exposure. Trust me though, I often wish it did. Oh how nice it would be to make connections in the more natural ways most other people do. But when you have autism, it doesn’t exactly work that way.

 

Thankfully, the stigma surrounding meeting people over the internet has declined as it has gained more and more popularity, and for dating at least, it has basically become the norm. There still seems to be an issue with people making negative assumptions about those who either have very few friends or those who have to resort mainly to the internet to find people they actually connect with. The problem though is not with us, the problem is how the majority of society perceives us.

 

The internet gives those who are different from the majority a useful tool to narrow down and locate people who are open minded, more similar to them, people who can actually accept them as they are. This is much more rare and unlikely to happen naturally in real life if you are on the spectrum, especially depending on where you happen to live. I’m sure some areas are better than others, but it’s still much more difficult and I feel like this is something that most of society does not fully understand yet.

 

Many of us want to have a more “normal” life but it just is not in the cards for us. It’s difficult enough coming to terms with this ourselves, and the unnecessary harsh judgement from people who don’t understand what it’s like is most certainly unwelcomed and not helpful. Our social problems are not due to a lack of trying, I can speak for myself at least and honestly say that I try VERY hard, but my efforts don’t seem to matter or make much of a difference at all. As you can imagine, this can become very frustrating and discouraging.

 

So before you start passing judgement on someone for having few friends or someone who met all of their friends online (it is extremely sad that this is still an issue even in adulthood by the way, seems like it is well beyond time to move on from the hang up on social status), consider the fact that perhaps the problem has nothing to do with them and that they are doing the best that they can. Those of us on the spectrum who do have friends are extremely grateful for the ones we do have, and tend to value quality over quantity anyway. Bottom line – if you don’t understand our struggles, don’t judge us.

Introduction

Posted: December 19, 2018 in Uncategorized

I’m a self-diagnosed adult on the autism spectrum writing this blog in the hopes that it may help others who have gone through life feeling misunderstood, isolated, and out of place as I have. My intent is to cover a wide range of topics, not all of which will be autism related but will come from a different perspective than the commonly published nuerotypical (non-autistic or “normal” – though I hate putting it that way as there really is no true normal) perspective.

The idea to write a memoir of sorts on the various influences in my life and how some of my experiences have shaped who I am thus far has been floating around in my mind for several years, and I have worked on it some on and off. That is part of why I deiced to start a blog, I thought it would be an easier way to organize my thoughts and get some feedback that could be helpful in putting together something that would hopefully be beneficial to lots of people. I would like to be able to provide something that I didn’t have – the knowledge that there are others out there who are similar and understand the unique challenges of life on the spectrum.

 

  • Note – I originally began this blog several years ago, and as I have changed and grown a lot as a person since then, I have removed and re-written my original posts so that they reflect who I am now.