Life, post diagnosis

I can count my disorders on one hand, but the weight their names carry would be even too much for a super hero to bear. Anxiety disorder, Autism, and ADD/ADHD (since they're combined in the medical journals). It seems being Mentally Ill has gotten a lot of attention because of amazing people like Carrie Fisher. This isn't something that needs to be shoved to the back of the closet, and ignored, this is something that needs to be able to be discussed freely with those you know, love, and trust. 

I have what many label as high functioning anxiety, I just call it "those times I can't fucking sleep, because my brain likes to make me relive the most embarrassing moments of my life". Anxiety is hard to put into words, but it is far from the same as being stressed out, in fact, its that black pit that forms in your stomach when everything is out of your control and all you can do is sit on the sidelines, defeated. There's stress, and then there's anxiety. Stress is usually easily alleviated, anxiety isn't. I see myself as a constant bother, annoyance, that thing from the black lagoon. Rationally, I know I'm not, but deep down, that's what the anxiety continually tells me. It tells me that I'm not good enough, that I can do better, that everyone secretly hates me.... Normally, I can fight against it, now that I know who and what my foe is, before the diagnosis? It was really scary. I could never tell what was happening and why I'd feel like trash. 

Isolationist periods. What does this mean? I legitimately do not have the energy to socialize at all times. You're probably reading this and going but it's just a 3 word text telling me you're fine! Meanwhile, it's an Olympic sport, for me. After the text is sent, I am left to sit, worry, dwell, examine, examine some more, an examine even further, those three little words, ensuring that my tone was fine, my wording was calm, and wonder if you've caught that I wasn't trying to seem harsh, heartless, or brash. Then comes the worry of conversation. Oh, and all of this happens within less than a 5 minute time period. Sounds frightfully exhausting, doesn't it? 

Normally, my depression meds are able to help with this, they're able to keep that little voice quiet, but right now I can feel it crawling past the barrier, and reminding me that people might think I'm talking indirectly about them. I'm not so petty as to make an entire post dedicated to passively aggressively telling my loved ones to fuck off. But, it's anxiety, and it likes to remind me of that time in the 3rd grade when a cute boy called me 4 eyes. Anxiety is senseless, ruthless, and toxic, but it's one of the things I now have a name for, and have been living with for a very long time. Ever since I can remember, I've dissected previous conversations and worried whether or not the person I was conversing with liked me, or just tolerated me. I've put literally every aspect of myself under the microscope and attempted to prevent the 'annoying' little quirks others have hated about me, but much like breathing water, that's impossible. 

Think I'm exaggerating? I remember when I was 5 or 6, my neighborhood crush told me I had a deep voice for a girl, and laughed about that. He possibly thought it was just a "huh" moment, the type that's easy to shrug off, but me? I thought it was a jab at me, and have since felt self conscious about that. I remember every comment made about my appearance, every spiteful comment said out of anger, and held onto it, but not of my own free will. Ever given me an inquisitive look when you think I can't see you? I saw it, and logged it away for future reference so I can possibly avoid the situation that solicited that reaction. 

Everything becomes infinitely harder. Everything I do needs to be examined, dissected, and approved. I'm not exaggerating. If you ever think I drink too much during social situations, and make a snide remark about it, it's because alcohol tends to dull the anxiety and frees me even if only temporarily. 

It. Is. Hard. Much like I imagine how hard leaping the grand canyon in a single bound on the first try, to be. 

None of this is dramatic, a lie, or fictional. This is my life. 

By now, you're understanding every action in conducting my daily life is closely examined, and weighed. There is nothing simple about my life, nothing easy, nothing mindless, or relaxing.... Some days are easier than others, which you'll hear a lot of mentally ill people say. Like, on my good days, I feel invincible, and on my bad, I feel like a leper, outcast, nothing. The low periods are usually followed by an isolationist period, where I need time to recover. 

What's life been like since we now have the name for this invisible intruder? Better. Life is hard on everyone, although it feels infinitely more difficult for people like me. Since we know what this is, we know how to combat it, and we're able to keep me safe and sane on my lowest days. Before, we didn't know what this was, and what it'd entail, so when I became hopeless, and suicidal, my husband would do what all he was trained to, although it rarely helped. What did help, was knowing that he loves me, and would always be there for me. 

Growing up as an undiagnosed autistic was difficult for both me, and my parents. I experienced the same things differently, and they were often at a loss on how to help me, so I was left to cope alone, that is, until I met David. Although he didn't share the same experiences as me, he lent what support and advice he could, which cemented what my parents had told me growing up. He taught me what it felt like to be supported, when I couldn't stand on my own anymore. 

Don't get me wrong, thousands of tears have been shed to get us to this point. We spent countless hours screaming at each other, saying things we didn't mean (out of anger), and then making up, until we reached that point where something had to change. We learned better communication skills once I swallowed my pride and confessed how things made me felt. Normally, a wife complains that her husband is the one with shit communication skills, with us, it was reversed. The autistic stereotype is that we are numb to the world, for me, that's not true. I am hyper-sensitive. I remember being described as a raw nerve ending by many of my high school teachers, and they said I was 'innocent' and 'needed to be protected' now I understand why. No, it isn't innocence, it isn't fragility, it isn't anything short of my own personal fucking brand of autism. 

What on earth am I trying to say in this rambling entry? Life has gotten infinitely easier. Thankfully, this is the digital age, and every piece of information I could ever need, is at my fingertips. Any time we are in doubt about what I'm experiencing, we rush to google and see if we can't track down other autistic women's blogs. Why? Because women experience autism differently than boys, and have yet to be studied while in the same environment as the boys who set the original standards for this disorder. 

a not so Fun Fact: Women are still being diagnosed late in life and often go undiagnosed altogether, since our symptoms manifest much differently than boys'. Cynthia Kim (the author of 'Nerdy, Shy, and Socially Inappropriate) was diagnosed well into her fifties (if I remember correctly). Her own child(ren) were grown, and weren't entirely shocked when she received the diagnosis. 

Contrary to popular belief, my diagnosis will not destroy my marriage, in fact, it's done the opposite. I am not a burden to my family and friends, and I am hoping this blog will help people to see this. No, being a person isn't easy, but it's less frustrating now that we've gotten the answers we so desperately needed for many years.

I will not stop talking about my mental illnesses. I am trying to normalize this subject, and also hope this blog can become a useful future reference to anyone who might need some help in understanding this. 

Hurtful, and negative speech

I am mentally challenged, not "retarded". This term is a slur, and should never be used to describe anyone. It is not some jovial endearment you use with a loved one, this is something that mentally challenged people have been labelled against their will. Want to know just how inappropriate it is? When someone was labelled this, they were often put into asylums. You saw it right, folks! If you were given this label, you were seen as undesirable, unwanted, and would then be locked away for the rest of your life. 

Are you even aware of the message you're sending to the possibly mentally challenged people in your lives? You're telling them that no matter how progressive you claim you are, that you retain this negative stereotype of them. Do you call your gay friend(s), a faggot too? No? Then don't call someone's foolish actions, "retarded". 

This is by no means dramatic, an overreaction, or me being "too sensitive". This is me being honest. This is me telling you, that you need to stop this. Don't be a part of the problem, that our culture has perpetuated. 

But Carlie, what is the problem? Autism Speaks, and anti-vaxxer campaigners like to say that Autism is bad, that it's a death sentence, that it makes the individual a burden, that they're unworthy of love, and acceptance. None of this is true. I am an autistic individual. I am unique, I am amazing, I am supported and loved unconditionally. This is why it hurts when a relative, or friend uses this slur, because, if they see that being an adequate way of describing 'goofy', is that how they see me, the mentally challenged person? 

Have I gotten my point across?
Have I said it enough times?

If you won't call me a faggot for being gay, don't call me (or anyone else) "retarded" for doing something "stupid". 

Oh c'mon, seriously, it's not that bad. Yes. It. Is. Let's take a look at how dictionary.com defines this word, shall we?

Retard

1.) a slowing down, diminution, or hindrance, as in a machine.

2.) Slang: Disparaging and Offensive.

• a contemptuous term used to refer to a person who is cognitively impaired.
• a person who is stupid, obtuse, or ineffective in some way:
  a hopeless social retard.

Does this seem encouraging to you? To me, it is far from. 

What are you expecting? We can't change the world, Carlie. 

"Without action, you aren't going anywhere." 

If you want to see change in the world, be it, but please, stop contributing to the problem.

My life, post diagnosis.

I am 25, and 8 months ago, I was diagnosed with Autism. 

Thanks to anti-vaxxers, and certain organizations, there is extreme negativity surrounding this diagnosis. When I tell people I'm autistic, I get the expression of pure incredulity, because I don't look autistic. This is a good place to start, as any. 

What is Autism? It is a developmental disorder. It is not a disease, and therefore cannot be contracted. It is almost guaranteed as being genetically passed from parent to child. It is absolutely nothing to be ashamed of, and you cannot grow out of it. It's asinine to think you grow out of a developmental disorder, like dyslexia, so why assume you can grow out of add/adhd? Yeah. I don't know, either. 

Are you low functioning, or high? I'm going to stop you right there. Functioning labels are hurtful. Unless the autistic person you're attempting to describe has assigned these labels to themselves, do not give them one. Nonverbal does not mean the person has no voice. Calling someone a low functioning autistic, is essentially calling them helpless. It's an insult. 

I've heard autism is caused by vaccines, though. NO. NO. NO. Vaccines are to help your children survive. You were vaccinated so age-old diseases wouldn't again threaten to exterminate the human race. Thanks to anti-vaxxers though, children are now living their lives in goddamn bubbles rather than playing in the grass, because they're sick majority of their lives, with things that haven't been an epidemic since the early 1900s. Vaccines help build your immune system so you can fight things like the flu, and common cold. But, hey, if you want your child to possibly die before they're 15, go ahead and tell the doctors to shove it up their ass. 

What's it like to be autistic? That's a really difficult question to answer.. So instead of me typing down my description, I'm going to put this here. It's a simulator of what it's like to be in my brain. It's stressful to watch, and brings me to tears every time, but this is my life. 

My diagnosis is not a death sentence, is not a curse, and lastly, is not a surprise. It will not end my marriage, it will not burden my friends or family, and is not 'inconvenient'. In fact, my diagnosis has helped my relationship with my husband. Pre-diagnosis, my communication skills were very poor. I didn't know how to verbalize my discomfort surrounding social situations, or even going to the grocery store when it's empty. All I could say, was that I was scared. I couldn't admit that the outside world was too loud. I had no reprieve. I could hear and smell things other people couldn't, and was often told that I'm a liar. I could pass as a "normal" person my entire life, up until about a year ago, when I woke up, and my entire world crumbled around me. 

Everything I knew was a lie. I was trying to fit myself into a box I was not made for. I was becoming a false person, and I was extremely unhappy. So, as I began to research autism, I learned about things like self stimulation (or stimming), meltdowns, and burnouts. 

On that day, almost exactly one year ago, I felt like the weight of the world was crashing down on me. I'd had a very stressful week before that day, and had melted down, without really even knowing what it was. I cried for several hours, that day. Once my brain calmed enough for me to properly comprehend words, I plugged my symptoms into google. Normally, I take anything google gives me, with a grain of salt, but curiosity got the best of me. According to doctor google, I'd experienced a devastating autistic meltdown, and I was determined to find out if google was right, or if I was just being a hypochondriac. I never expected for my entire life to be thrown into question, when I woke up that day. Sounds a little dramatic, right? But how else should I have reacted? So, as I researched this disorder, I found things that actually applied to me, which was shocking at first. Apparently, dyslexia, add, adhd, autism and other developmental disorders all exist within the same spectrum. You see, when I was in the fourth grade, I was formally diagnosed with ADD, so having this bit of confirmation was absolutely glorious. My research didn't stop there. 

Throughout that day, I learned that girls are the hardest to diagnose with autism, since we don't display the same symptoms as boys, which ultimate results in girls going undiagnosed. Thankfully, in this technologically driven age, we have an abundance of information at our disposal, so those girls who, happened to slip through the cracks, like me, are able to collect the appropriate amount of information to be properly diagnosed by a professional. 

While I collected information, and began logging it down, I put myself under the microscope,  and asked my husband to do the same of me. When I asked, he divulged information on behavior I didn't know I would display during stressful situations. I was so proud, but also slightly horrified. My husband, who I often accused of being unobservant, was in fact the opposite. I am not perfect, but on that day, I realized I'd been downright nasty to my husband on several occasions, without realizing it. He'd try to defend himself, call me out on my behavior or communicate, and I'd just shut him down. I'd get so incredibly angry at times, that I couldn't hold it, and I'd start screaming. We didn't understand it in the early days of our marriage, but somehow, we got through these rough periods. I'd begun to feel like I was caught in a cycle of abuse, but I was the monster, not someone else. I was so afraid of myself, and I knew at this point, things could absolutely not go on as they had.

I love my husband, and my deepest fear is that someday, he'll leave because he can't take any more of my bullshit. So, I vowed that I would change. I began telling him things I was ashamed of myself for. I swallowed my own bullshit ego, and told him how I felt during social outings. You don't know difficult until you try to give something words, that you've only seen as images in your head. Words are difficult, and unnatural for me, which probably seems kind of shocking to you, doesn't it? My brain doesn't function like yours might. 

It's been a year of change, of growth, of discovery, and of adaptation. In this past year, we've learned to be entirely transparent with one another. We don't need to be ashamed of ourselves with one another, because despite all of our shortcomings, and failings, we love each other. 

Life before my diagnosis was rocky. We never knew if I was going to be my happy, bubbly, self, or if I was going to be an emotionally unbalanced mess. Life after my diagnosis is almost the total opposite of what we had known it to be. 

You're probably asking yourself why I've dedicated time to writing all of this down. It's unflattering, brutally honest, slightly depressing, and socially inappropriate. I've tried my entire life, to appease others, to shrink into the background and not call any attention to myself. By doing this, I minimized who I am in order to gain the acceptance of toxic people. These people would want nothing more than to sculpt me into who they feel I should be. 

I am Carlie. 

I am an autistic adult. 

I am happy. 

Hear me roar.