Living as an untreated adult with SPD
Here is my most effort driven attempt to explain how I feel. This is a letter I typed to distribute to my friends and family, and people I have missed throughout the years. if no one ever reads this, that's fine. I'm just happy to finally begin understanding how to be happy.
What it is like to live in the adult Asperger/SPD Spectrum without treatment
Okay everyone, you all have no idea how much I care about you, but cannot show it. I want to explain something that bothers me in regards to how I treat those I care about. I don't do calls, I don't send periodic texts to those I was once close to, I'm not good at reaching out. Over the years I have lost family in so many different forms; I know you all still love me and care for me, but I haven't interacted with a lot of you in years. And I am too young for that, and you don't deserve it. Just know this, I do not do these things to be hurtful. I am always thinking of everyone, and that is my problem. It scares me, makes me freeze up, I have extreme phone anxiety, I feel I will be judged or shamed for not speaking to people in years... So I continue to let the phone sit.
I come off as callous, cold, distant, narcissistic, or too wrapped up in myself, but the truth is I have always been this way, it has just become more harmful as I've grown into adulthood. Warning signs for many things were not taken care of since my childhood until the present. I can't live like this anymore, I truly want to get better, I want to show the love and warmth I feel for life and loved ones. I want to feel their warmth reciprocated, but the way I am now I cannot feel these things, or it is very temporary. I am ever excited and interested in everything and people’s lives, but it quickly fades, leaving me with a feeling of being let down, not understood, not being on the same page, overly concerned with certain minor (but important to me!) details, frustrated, ignored, annoying, irrelevant, overly informative, blunt, apathetic…. I don’t like people telling me this is who I am, because this is not who I mean to be when I do or say things. So I become avoidant of these stressors.
Imagine if this is how you felt every moment of every day, so much that you can’t sleep at night: every night, for years getting little to no sleep, then bingeing on sleep at times. Feeling you are constantly in fight or flight mode. Being full of energy then crashing, or going and going until you physically can no longer go. Feel overwhelming lethargy. Craving large amounts of food despite not being hungry. Avoidant of drinking liquids or thirst. Compulsions to touch, taste, smell, hear everything, whether you want to or not. Being unable to block sounds that otherwise do not bother others, causing intense and immediate frustration. Mood swings. Fear of falling, inability to hold yourself up near edges or stairs, panicking from the feeling your legs will uncontrollably give out from beneath you. Getting vertigo and motion sickness from stairmasters and treadmills, nausea in cars. Lacking balance. Not learning to ride a bike for the first 12 years of your life because it made you recoil and want to cry, your heart pounding.
Always hearing your pulse, feeling it, and it slightly disturbs you, along with the sound of your breathing. The way your head lays on the pillow and you can hear your hair rubbing against the material like bristles of a straw broom, every time you breathe, keeping you awake. The ticking of the clock, the rotation of the ceiling fan, the little clink the chain makes as it swings. Your own body temperature is uncomfortable. Always having to tap your foot, wring your hands, clench your jaw, grind your teeth, pop your knuckles and every other joint in your body. Foraging the surface of your skin for imperfections, being extremely agitated until the imperfection is gone. Destroying your nails. Feel your muscles pulling when you lay or sit, feeling it’s impossible to get comfortable, restless legs. Humming and singing and whistling until your muscles are tired! Thinking you never want to stop because it is audibly rewarding and pleasing, yet wishing you could get the music, melody or words, lyrics out of your head as they cloud your thought. Lights, noises, temperature fluctuations, visual impediments, asymmetry, pitch, colors, shapes, speed, imbalance, incompetence, emotional withdrawal, all of these things grinding you down daily until you are a stub of the person you intended to be.
Instead, you are warped into this portrayal of a person that is careless and callous because you don’t want to feel or think anymore. This then frustrates you more as you continue to think, over explain to others your point of view so that they can see, them misinterpreting your intent or morals, leaving you dejected, ashamed, embarrassed. It’s not so much that you desire certain things; your body is telling, almost forcing you to do, touch, see taste, hear, feel internally these things daily whether you want to or not. You have no choice (at least you think that way illogically). Not even if you rather be focusing hard on work, studying, learning, laughing, relaxing, doing a favorite hobby, working out, feeding your body what it is meant to be fed, organizing, socializing, deeply connecting, sympathizing, sleeping.
Instead you are classified as a narcissist who cuts to the meat on every topic, leaving others in your harsh wake. But see, to me, I live a certain way because my body is telling me to freak out if I don’t. We all live in our own reality, but no one lives in mine (same goes for you). I could be completely wrong and everyone right, but that is no consolation prize. All we as people can do is see the world in all possible lights, perspectives, but ultimately, it is our life and happiness on the line. The way I cope is by coming to terms, thinking as logically as I am able, being calculated yet off the wall spontaneous, up and down, cutting to the chase, not observing or respecting excuses, calling offenders out, confronting negativity, challenging ignorance, teaching, discussing, arguing, humming, singing, whistling, fidgeting, chewing, biting, pain, being tense, obsessively researching anything and everything, learning, watching, controlling things in my realm, blocking people out (or letting them in), being alone or being in crowds of strangers, loud layered music that others can find ear wrenching and much more.
I realize now that I have been coping my entire life. Now being an adult, I know it is not a healthy way to live and I want to live for myself again. For years, I have been living for others, wanting to be perfect. I wanted to be a good daughter, sister, student, artist, reader, writer, scientist, friend, wife, employee. Yet no matter how well I was doing, I never felt good enough. I thought I wasn’t getting enough support, but really I was incapable of these lasting feelings. It didn’t matter that I had a 3.7 GPA , had taken 9 honors classes, passed 3 AP tests in a row, despite my family’s education history; me moving, travelling, getting back to work, school and job; getting a car, having health insurance, getting promoted. I have everything I need and want, but I can’t enjoy it. It is not that I am too good, or that nothing is good enough for me. Everything is more than exceptional to me! I love everything and am incapable of getting bored because our universe and mental/emotional capacity in nature is amazing!
Picture it like this:
You work hard and do your job very well, but you feel like a failure. You got yourself in a great position for your age, make good money. You have a house with great roommates, yet you want to run away, needing attention then hating attention. You’re happiest alone in your car driving, or in the shower, in your own little world. Being in a sea of strangers is comforting to you. Only with high noise density of certain droning pitches do you feel at ease. Pain distracts you from your overworked thoughts, relieving. Texture intrigues you and you visually map every tiny detail. You remember everything you’ve ever smelled and can recall it easily. You can’t stop eating because you never feel full. You don’t drink because you’re never thirsty, sometimes until you feel you are going to pass out. You hold pencils in a way that you break them because you don’t notice you’re increasing grip. Your jaw aches from how fervently you chew your gum, forcing yourself to spit it out because you can’t help but chew harder. You have migraines until you listen to thrashing music, or religiously take Excedrine. You want to touch things constantly that you shouldn’t touch, leaving you with a sense of longing and a lack of fulfillment, leading to sadness. You can see things in clear logic, yet still in no way desire doing those things, becoming angry that you even tried because you knew you wouldn’t accomplish it in the best way. You know the only way to improve is to do, yet it is mentally exhausting and emotionally draining. You try to show people information that will lead them to the joy and wonder of appreciating every single minute detail, only for them to see the big picture, only nodding their heads, or their eyes wander to something that is to them more interesting than what you’re saying, crushing your hopes. All you can crave is, “Yes! I agree! I feel the same.”
My life is made of building blocks, like the limestone blocks that make up the pyramids, only the pyramid is inverted. I see, feel, hear, taste, smell things in this way; the transcending interconnected progression of the chemical, cellular, tissue, organ, system; outside environment, abiotic and biotic factors, organic to inorganic; gas to solid, water to ice, object to fire to smoke to ash. Everything we experience daily can be broken down into its elemental form or basest form. All of this aside, I almost wish I couldn’t experience the world this way, that it is a dragging curse, denaturing my life. But how could I ever say I don’t want this? Being a part of the world the way it exists now, I could be completely alone or be around an infinite forest of strangers and probably be content. But we don’t live this way, we make connections, create emotional responsibilities and support systems, causing interdependence. And interdependence is the very thing that jostles my reality and keeps me constantly in fight or flight. All I want is to numb the pain and live in the bliss of this life I have a fleeting time to live; however, I want to care and be cared for, without it leaving me in agony.
All I can do is seek treatment and try to work my goals into a routine. I will try. I will be starting over. I will still be me in all ways, but I want to be a compatible person to the rest of my family, friends, coworkers, acquaintances and strangers. I will try to channel my Human Element.
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