Hidden Guilt: Growing Up in the Shadows of a Sibling with Severe Autism

1 in 150 people are diagnosed with autism, whatever that means. The spectrum is so vast and malleable – its causes so unknown – that every case truly is “individual.”

My older brother was one in 150. He is nonverbal, has seizures (which are under control with various medications I will never be able to pronounce), relatively violence tendencies, and will never have the opportunity to live on his own. He is my world, and my life has revolved around him.

A little over a year ago, I suffered a mental breakdown following years of depression and a series of traumatic events. Once enough time had passed I drove my clunker 2005 PT Cruiser up to a tattoo parlor in Nyack and spent three hours under the needle of an astounding artists. A few months later, I made this photo my profile picture on all my social media platforms and used it as a space to share my story. (aside: the love and support I received from friends was profound and I am eternally grateful)

Flash forward to four days ago (bare with me):

A café in Kreuzberg, Berlin, Germany. I am chatting with a classmate of mine, exchanging stories riddled with guilt, hurt, tears, laughs, regrets and fears over coffee and whatever breakfast food we were able to pronounce. She had reached out to me over that weekend because she came across one of my social media posts surrounding my tattoo. She, too, grew up with an older sibling with autism. In her message, she said my story felt more similar to hers then she had ever read before. I nearly cried then and there, jumping at the opportunity to connect.

Growing up with a sibling with autism I constantly felt an endless wave of contradictory emotions. Profound love and fueled hatred; joy and a nagging sadness; free and boundless, and yet trapped, bolted to the ground

Most of all: guilt. Guilt for being blessed with the chance at a full life; guilt for failing to take advantage of every opportunity that comes my way; guilt over feeling embarrassed in public when my brother through a fit; guilt over defending myself when his violent outburst were directed towards me; guilt over praying that he would some day never come home; guilt over those brief moments of hatred and anger; guilt over accidentally causing any additional trouble for my parents; guilt for yearning a different life . . . I could go on.

For years I attempted to seek out individuals like me – 1 in 150, they cannot all be their parents’ only children, could they? I took to the Internet, researched, wrote and continuously came up empty handed. Alone. I would grasp at straws where I could, yet any harsh truth about our lives would be glossed over – it is, after all, no one’s fault – and I would once again be overwhelmed with guilt.

Talking with my classmate, now friend, about our childhoods and our lives today was like removing a huge boulder off of all of our shoulders. For various reasons, the harsh truths about having an autistic child in the house is never discussed, out of fear of what? Misplaced blame? False accusations? Even more guilt? Reality is either too hard to face or taboo to discuss, so we suffer in silence.

Below is my story. To anyone who comes across this and yearns for someone to understand them: I am here for you. Our stories may not be identical, our pain may not be the same, but I am here to listen to you. Our love for our siblings is real, yet our pain and guilt are too. We may not have anyone to turn to, but we can have each other if we can just chip away at the barriers between us. One day, my dream is to make a community for siblings of those with autism: no expectations, no judgment, no guilt, Until then, I strive to be open and honest about my story, and here to listen to anyone out there drowning in guilt and loneliness. Your feelings are valid, your life defined by more than your siblings’ or cousins’ or nieces’ or nephews’ DNA.

I’ll prove it to you.

om lotus tattoo

As many of you are well aware, I’m often a closed book when it comes to my personal life and prefer minimal participation on social media (I bet half of you forgot we were friends, another chunk will probably stop reading here). I’ve always been skeptical of personal and novel social media posts, perceiving them as attempts to fill some kind of void we’ve created by being unable to face ourselves in the mirror by instead picking up our phones anxious about the likes we’ve received or having Netflix on in the background while fucking and calling it love. While I doubt my skepticism was completely misplaced, I’m going to take advantage of this platform, place a few dollars into my hypocrite jar, and share in a pathetic attempt to virtually connect with some of you (hello? anyone still there?). While I cannot deny that the slightest attention would be appreciated, my goal is to do the dirty work like a coward behind my computer screen: too socially anxious and emotionally distraught to break the ice in person, while simultaneously yearning to begin sharing parts of me with others.

Some of you (actually, probably quite a slim number of you) know, I am the younger sister of a non verbal, low-functioning autistic brother. Many of you have likely seen the benefits being in my position have produced: maturity, responsibility, empathy, perseverance, and an appreciation for my ableism (with an equal judgmental intolerance for narcissistic, immature assholes). What none of you likely know is the price I paid for these qualities: twenty years of living in the shadows, and in constant fear. I’ve lost count of the amount of times I was pulled from room-to-room by my hair; scratched and hit for putting something where it didn’t belong and getting in trouble for fighting back; sat crying in public during his tantrums; abandoned in places from hospital elevators to amusement parks (Disney sucks); the amount of times I would kidnap my cat into my closet with me after being hit by broken glass; nor can I count the amount of nights I’ve lost sleep either from uncontrollable screaming, door-slamming, cursing parents, and a general fear that he would remember that my door did not have a lock on it.

Even so, the my parent’s mantra was endless: he is the way he is, you need to accept that and understand and appreciate how lucky you are that he is not worse and that you have a roof over your head and food to eat. They had a point, and I accepted it. I kept my head down, I kept quiet. It would be my fault if someone drew the wrong conclusions because they didn’t understand my brother’s condition; it would be my fault if anything bad would ever happen to him. I did my best to do well in school, to achieve in sports and extracurricular to get whatever split second of positive attention I could from my exhausted, overwhelmed, over-worked, socially isolated, short-fused parents (usually to no avail). Then the impossible happened: I graduated high school.

So, now what? College was the first time anyone asked me what I wanted and I answered how I learned to: to please those around me. I quickly learned that I lacked the ability to connect and bond with other people and was swallowed by the pure, eternal loneliness my upbringing gave me. No one else stopped having birthday parties because their brothers attacked their friends; no one else was unable to have family dinner or celebrate the holidays without incident; no one else was raised to feel guilty anytime they became upset or angry or frustrated or hurt; no one else knew was it was like to be raised in an endless state of fear (yes, I’m aware I’m painting with a very broad brush when I say “no one”, but humor me). Impressively quickly, I became overwhelmingly depressed while equally submerged in a state of denial. It couldn’t possibly be me – hadn’t I learned to compartmentalize everything years ago? It had to be the school, it had to be the people, it had to be the air. Only after beginning at my third college in three years did I realize that my inability to feel joy, to trust other people, to write poems that weren’t desperately Poe- or Plath-like weren’t new phenomenon. They were there the whole time.

In hindsight, while my parents might not have always handled the situations I mentioned above in the best ways possible (whether they did this intentionally I cannot speak for them, and prefer to remain in at least some state of willful ignorance), they never denied reality. It was hard on everyone and we just had to try and make the best out of a bad situation. Like most multi-dimensional issues, this comes with a caveat. At a fairly young age, my brother violated me in a way I didn’t fully understand until he did so again in high school. Even then, it was just something else I brushed off because he couldn’t possibly have any grasp on what he was doing . . . until I couldn’t bury it anymore. I quickly discovered that emotional connections weren’t the only connections I failed to make. Perplexed and scared in ways I hadn’t been before, I confided in the only family around me – only to be met with rounds accusations of falsification and storytelling; of taking things the wrong way; of being the one to blame because I was the only party in my “right” mind; of not being tough enough to deal with my problems. Surely, it was all in my head, right?

Giving up hope, I added a new dimension to what I had learned years ago: this was the they things are; nothing could be changed; this is the way things needed to be: this was my life. After another incident this past January – following by a fresh rounds of accusations of lying and attention-seeking, of blame – I drew the conclusion that this life, the one I had accepted for myself, was no longer worth living.

A lot has happened in the past six months and while I do not wish to dwell on it (MDD/PTSD by the way) any longer, I still have maintained the ability to appreciate the good things in life I have been given. I would like to express my sincerest gratitude to the people that have given me more during this time than I could ever repay; for as the Dalai Lama once said, “The only way we can get by in this world is through the help we receive from others. No one can do it alone, not matter how great the machines are.”**

Thank you to the psychiatrists and social workers who listened to me without judgment, who fought by my side, who reminded me that I wasn’t alone, and who kept those prescription pads handy (fifth medication’s the charm?).

Thank you to my therapist, Jennifer, for giving me a safe place to connect with myself, my emotions, my experiences and assuring me that my feelings are not misplaced or unjustified. You let me speak my mind, allowing me to become vulnerable without fear of being taken advantage of. I still have a long way to go, but with you I’ve begun to construct an identity, a future, that I never thought was attainable.

Thank you to my friends and their families for believing me; for believing in me; for being there for me; for welcoming me into their lives, and for teaching me what it means to not only have a family, but to be a part of one (not to mention letting me squat in their basement).

To my parents: I am not angry, I am not resentful. I know that there are reasons for your actions and decisions, and I’ve made peace with that. I’m not asking for you to apologize. I do not blame you – for I don’t know if I could have handled anything better myself. My only hope is that you make the decision to be a part of my healing, my future. Thank you for your patience and willingness to learn with me and help me move forward. I’ll always love you.

Where will I go from here? I have no fucking clue. What I can tell you is that I plan on graduating college sometime this millennium; I plan on becoming a high school social studies teacher; I plan on scoring tickets to “Hamilton” (ideally before the zombie apocalypse, but that’s looking increasingly unlikely); I plan on looking in the mirror and not despising what I see; I plan on writing mediocre poetry; I plan on finishing “Infinite Jest”; I plan on learning how to ride a bike; I plan on learning how to use a semicolon correctly (OK, maybe not); I plan on celebrating my 21st with a day off, a good book, and great friends; I plan on traveling to Edinburgh or Hamburg or Amsterdam or Seattle; I plan on learning to trust others with myself and to surround myself with people that love and respect me; I plan on learning how to love and respect myself. The list goes on . . .

Now, I know many of these goals will take a consuming amount of time and energy and some will be more difficult than others (especially “Hamilton” tickets . . . mainly “Hamilton” tickets), and this is why I got this tattoo to remind me to keep going. The lotus flower proves that something strong, resilient, and beautiful can grow from the murkiest depths; Om represents creation and silence; purple and blue are my favorite colors. Like it or not, it’s here to stay – just like me.

xoxo,
Alyssa (June 2016)

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