On Autism and Depression

Today is a very special day for me. For those of you that don’t know, today, April 2nd, is World Autism Awareness Day. World Autism Awareness Day is an internationally recognized holiday dedicated to raising awareness and support for people with Autism Spectrum Disorder. On this day people are encouraged to “Light it up blue” by wearing blue. Many iconic landmarks from the Empire State Building in New York, to Christ The Redeemer in Brazil, to the Leaning Tower of Pisa in Italy, to the Sydney Opera House in Australia, even the International Space Station have all been illuminated with blue light on this day.

In honor of this day, I write a lengthy post every year about having an autistic brother and how he has shaped my life; to do my part in spreading awareness, shedding a little light on what it is like to be around someone with autism. I usually share the positive side of having an autistic sibling, almost as if it is a self-help hack. I have made it seem like if you have the opportunity of having an autistic person in your life you will be blessed with immense gratitude, empathy, compassion, and all of the other positive mindsets that guarantee a happy and successful life.

While it is possible to harness these attitudes, they do not come easy. There is a precursor to all of this positivity, and that is the long winding road of negativity. The feelings of sadness, guilt, anger, despair, isolation, and more that I will get to throughout this post. While every word I have ever written about this is true and I am extremely proud of all of it because it has been aimed at destigmatizing the outsider’s perspective on the abnormality of people with autism and I believe I did just that; I also believe I have done a disservice to all of the parents, siblings, extended family members, and myself. Everyone that didn’t make a choice to have a person with a neurological disorder — not just autism — in their lives. By not addressing the harsh reality that often comes with having a person with a neurological disorder in the family I have completely excluded one side of the story and a whole lot of people. I have done a disservice to the autism community as a whole because showing support for the autism community is about supporting everyone affected by autism, from the person with the disorder themselves to the whole surrounding family that struggles as well.

For those of you that are familiar with my writings on this topic, I’m sure you can already tell this isn’t the stereotypical happy-go-lucky post I have written in the past. This might be an a-round-about way to do this, but this post is aimed at the individual family members that have encountered similar struggles. I want to offer my story to show that they are not alone, that we all struggle and that it is okay to feel all of these negative emotions.

Disclaimer: this is by far the hardest thing I have ever written. It was not easy for me to be this open and to put all this out there for reasons as you will see throughout this post. Some of this I have never shared before with anyone. If you are exceptionally close to me or tend to be overly sensitive this might be a good place to stop reading…

My brother Jake is 3 years younger than me. If you met him without actually knowing him, you would think he is completely normal at first glance. He has no exterior physical signs to match his inner reality. He doesn’t have a label or any signals that let you know he is different. But as soon as you try to engage him or he engages you, you will quickly realize that something is off. And something is, Jake has autism.

Autism, like most neurological disorders, comes in all shapes and sizes. There is no way to categorically generalize a typical person with autism; but the way I usually describe Jake to others is, “imagine a 3-year-old trapped in a 21-year-old’s body.” Jake can speak, in fact, he hardly stops speaking, but his conversations have very little substance. He can share some of his basic desires, he can say he is hungry or that he has to go to the bathroom. He is also smart enough to know to say these things when he wants to get out of doing something he doesn’t want to do even if he really isn’t hungry or doesn’t have to go to the bathroom. But he can’t tell you that he has a stomachache or a toothache or that he is sad or overwhelmed.

When he is in pain — physically or mentally — he has no way of expressing what is truly going on. He will scream and throw tantrums, but there is no way to pinpoint the real, underlying problem which is obviously an issue. The inability to express one’s self is a fairly common trait amongst people with autism and is the basis for a lot of difficulties within families, especially mine. It is unfathomably challenging watching someone you love unconditionally suffer, having no way of finding out what they are going through, and not knowing what to do to alleviate their pain.

I don’t remember when or how I found out Jake was autistic, I don’t remember how I reacted or if I even understood the gravity of what that meant (I certainly didn’t), I don’t remember a lot of things in regards to my childhood.

There are certain things I remember like our family trips to the Bahamas, having near court-side season tickets to the New Jersey Nets games and going with my dad, and having hand-drawn Pokémon characters of my brown paper lunch bags to take to camp every day thanks to my mom.

I remember some really great things from my childhood, I have a lot of positive memories shared with each of my parents. Unfortunately, I have little to no positive memories with Jake, but I do remember other kids making fun of him while he was making a scene at rec basketball games. I remember not wanting to bring friends over because I was afraid of what they would think of Jake and if they wouldn’t want to be my friend anymore because of him. I remember eating all of my meals alone in my room so I could pretend like I wasn’t living with a crazy person. I remember my room getting ripped apart by Jake if I forgot to lock my door. I remember every day was a series of invasions on my privacy, pleasure, and peace of mind. I remember my parents walking into my room and telling me they were getting divorced (although they will never admit it, I know Jake was a key factor in that happening. They might have got divorced anyway, but the dichotomy in how they approached and handled his autism definitely amplified any issues they already had. Nobody likes to admit it, but having an autistic family member shatters the whole family). I remember not wanting to put any of my burdens on my parents because I felt like they were already going through so much with him and the divorce. I remember promising myself to be nothing like Jake. These became my core memories, overwriting all of the other happy memories and eroding my personality.

Because Jake is the “special” one, I did whatever I could to not be special in any way. I strove to be the most normal, ordinary, mundane, boring person in the world. I wanted to simply exist without my presence having any notable impact on other people’s lives around me. I dumbed myself down until I had nothing unique about me aside from the fact that I had an autistic brother and even that wasn’t unique (I think at the time we found out he was autistic — around the year 2000 — it was around 1 in 150 children were born with autism. Now it’s approximately 1 in 59).

Some siblings have a compulsion to accomplish in order to make up for the lack of contribution their sibling can make, but not me. Instead of trying to overcompensate I underperformed at everything. I never wanted to overachieve because then I would get noticed and when I got positive attention, I felt guilty and unworthy of it knowing that Jake needed it more.

I remember trying to do all of these things to differentiate myself from Jake, and all it did was make me feel alone and isolated and scared and depressed and angry all of the time. I was feeling all of these negative feelings but didn’t understand why because I was normal, so what right did I have to complain or feel sorry about anything?

I had a fully functioning brain, and Jake didn’t. However, instead of taking advantage of my privilege, I stifled it in attempts to not feel anything because none of my concerns ever seemed as important as Jake’s. Jake’s needs are immediate, nothing I ever had going on seemed as pressing. No matter how much I was suffering on the inside, no matter if I never amounted to anything, I knew that I was still better off and I was forever going to be.

I couldn’t make sense as to why I was feeling all of this negativity inside of me, and that made everything even worse. I was searching for answers that I couldn’t find, and the lack of clarity perpetuated this spiral of negativity and further enhanced the belief that my negative emotions are unacceptable. I should have felt lucky that I was normal — at least that was the message I kept getting (Note: Jeanne Safer, Ph.D. writes in her book The Normal One Life with a Difficult or Damaged Sibling, “It is a covert form of discrimination against normal children; the sibling of the child with special needs is not supposed to have any needs.” (p 105)) — but I didn’t, I felt depressed. The negative energy flourished due to the amount of resistance I had to my reality. I thought it was the privilege I had of being “normal” that was the cause of my misery, evidentially it was just my opposition to it.

On top of that, I didn’t allow myself to have an outlet for my emotions because I didn’t want to have outbursts like Jake. I didn’t want my emotions to rule me, I wanted to rule my emotions. I didn’t want anyone to know what I was feeling because I didn’t want to be vulnerable and I certainly didn’t open up to anyone else because I didn’t want anyone else carrying the weight of my burdens like they did Jake’s, especially after my parents got divorced.

After the divorced, I felt like my parents already had too much on their plate’s and were to wrapped up in dealing with their own issues to deal with mine. My mom was too busy with my brother and too broken from the divorce to really be there for me mentally, and my dad was too busy running a business and doing whatever else he was doing to really be there for me physically or mentally either. Not taking anything away from either of them, they were — and are still — great parents. I believe they always have done their best to care for me, but I was too closed off and stubborn to actually notice this. I couldn’t see and didn’t feel how much love they actually had for me. I just thought they had their own voids to fill and anything I piled on could’ve been the straw that broke the camel’s back and sent either of them spiraling down the void.

Instead of opening up about this and saying that I felt unloved, I bared it. I isolated myself, locking myself in my room to be all alone and fulfilling my desire to have no impact on anyone’s life, not even my parents. I was starved for their attention and love. I felt abandoned, but I was happy thinking that my troubles were my own and that I wasn’t causing others the same pain Jake was when he had his outbursts.

So, I kept my emotions bottled up. Occasionally, too much pressure built up and my emotions would leak out. Even though the restrictions on my emotions were initially self-imposed, it was moments where I felt out of control emotionally that made me hate Jake’s outbursts even more. I never wanted to throw a tantrum, but I resented his freedom to liberally have them.

I wish I knew at the time how much distress I was causing my parents by holding everything in. I thought I was doing a good job of keeping my feelings to myself, but my sorrow was written all over my face. I remember my parents begging me to talk to them, but I consistently refused. Partially because I didn’t want to, partially because I didn’t know how. After being asked to open up enough times, I eventually had enough and I broke down. I was trying to seal myself off while they were trying to pry me open. It was two opposing forces and I couldn’t take it anymore. I realized I did everything I could to differentiate myself from Jake only to wind up being extremely similar, just on different wavelengths. It was the first time that I can remember that I felt like a failure because I was everything I tried not to be, mainly a burden on my parents — at least that’s what I believed about myself. They knew I was in pain emotionally, but I never opened up about what that pain was and gave them no opportunity to heal it. I was mimicking Jake’s without even realizing it.

I wish I could say that this is the moment it all changed, that I had an epiphany and came to the realization that I needed to be more open and honest about what was on my mind and in my heart for my sake and others; but it only made me close down more. I clenched my teeth and transformed my heart into stone. I felt like I was still allowing too many emotions to seep through the cracks, so my answer was to try to stop them even more while all along it was the contrary and I wasn’t letting enough pour out. I sacrificed all my thoughts and feelings in an attempt to be even more separated from Jake. To be independent of any emotional support.

A person needs to be able to acknowledge what they are thinking and feeling so they can verbalize and deal with it in a healthy way with the help of others, but I didn’t believe I could do that. The problem is that when you get used to shutting down your feelings that becomes your default response. It becomes a habit, and if you do it for long enough, your feelings begin to atrophy until you hit the point of utter apathy leaving you completely detached from your emotions.

Which is exactly what happened to me. Through the actions that I kept repeating, I programmed myself to become more distant, standoffish, and cynical. I labeled myself as a realist because, from my perspective, the negativity was my reality. In actuality, I was pessimistic about every opportunity that came my way. I would walk around bitter and angry and unwilling to show any signs of positivity to the world. I let my mindset and unfiltered emotions cloud my attitude dampening the mood of everyone around me. As we so often do, I shaped the outer world to match my inner reality. I believe that the mind is a magnet and the world is a mirror, and since everything inside of me was negative, that’s all I was able to attract and all I was able to see. In hindsight, I had so much to live for but was blind to it all.

Soon enough, things got really bad. Nobody knew this, I didn’t want anyone to, but I was having suicidal thoughts. I thought about the different ways I could have killed myself and covered it up to make it seem like an accident. It was serious, but I knew I could never do it; I was too afraid of causing myself physical harm. I had so much pain inside of me that I didn’t think I could handle having any pain inflicted to my body (even though I broke countless bones and was training in mixed martial arts). Since I couldn’t do it, I needed to find another way out. I needed to find a way to free myself from the darkness before it consumed me.

My answer was to leave home. I decided to go to school in sunny south Florida. Far enough away from my family to put them out of mind but close enough that I can rely on them if need be. My dad had an office, and my mom had family down there so I hoped that maybe they would visit and I would get to spend some alone time with them. That we can have a fresh start and I could gain a fresh perspective on what a family — albeit a broken one — was supposed to be like.

Thankfully, here is when things began to turn around. My parents would occasionally visit individually, and I would go home for brief stints over the summer and winter breaks. I would be with them and Jake for moments of moderation, and I had a car so I was able to come and go as I pleased. I finally began to feel alone but in a healthy way. In a way that I was able to find myself without feeling guilty that I was making strides in my well-being while watching Jake be Jake.

This kicked off a long and slow journey of self-exploration. After 4 years of being away in college, I knew I had more work to do and found a 2-year program in Israel where I could work on myself even more. It was the best thing I have ever done for myself.

Without leaving home, I don’t know where I would be and if I went home after the 4 years… I probably would have reverted back my old ways. That’s not to say that I don’t still have bad days — or even weeks — I do. But now the negativity doesn’t consume me since I have gained tools and the competence to use them. I also found a support network I can count on when times get tough.

I spent countless hours in therapy sessions sharing what was going on inside of me, 6 years away from home figuring out that I am more than just a sibling of a person with autism and socializing with the outside world, I spent time with life coaches, I did reiki sessions, I had spiritual readings (astrology and tarot cards), I read over 50 books on self-help, psychology, and autism to see things from a different perspective, I filled out several psychological assessments to understand my inner workings, I wrote a post on autism for the past several years forcing myself to see the positive sides of having an autistic brother, I developed a morning routine and S.P.I.C.E (spiritual, physical, intellectual, creative, and emotional) practices to try to set myself up for a positive day every day, I meditate to calm my mind, journal about the things I am grateful for and my highlights of each day to see the good that surround me. I spent so much time digging myself out of the hole of negativity that I created. I put in the work to turn my life around and still do.

Depression, in it of itself, is an uphill battle, depression triggered by a family member is a lonely one. Having an autistic brother hasn’t been easy for me; but if it wasn’t for Jake, I would’ve been like everyone else. I would have gone through the monotonous motions of regular western life and never set out on the journey to get to know myself. I tried to be normal for so long, it just made me miserable. It was only once I started being myself (doing things because I wanted to do them, not because I felt like I had to be someone for someone else) and accepting my reality and my feelings that I started to find peace.

Once I realized I was the cause of everything I was feeling — that the events themselves weren’t the source of my emotions, they just stirred the pot of what was already inside of me — did I begin breaking the mold of my old self. I started to understand that I was going to encounter certain situations in my life that I had no control over, but I did have the free will in how I was going to respond if I had enough consciousness. “Bad” things still happen to me, but now I have the awareness and tools to not add emotional fuel to the fire. I can face adversity and overcome it. Understanding that I was not a victim to my circumstances didn’t cripple me, it empowered me to feel again. It gave me the strength to sit with all of my feelings and not fight them, not try to find a reason why I was feeling a particular way, it gave me the permission to just be.

My emotions were never the problem, what I was doing to them was. By attempting to not feel bad, I inhibited myself from feeling good. Through first-hand experience, I have learned that the emotional spectrum has an equal deviation on both sides, attempting to curtail one of them throttles the other as well. The ability to feel the good and bad sides will always match one another in capacity. By attempting to limit the downside, I became unable to feel the upside, I reverted to the middle—to indifference — and became disconnected. When I finally took responsibility for my emotions and allowed myself to be okay with being sad was I able to have compassion and gratitude again. It was only then that the flood gates opened and the positive attributes that I have written about in the past flowed through. Plus, I no longer resented Jake, or my parents, or myself.

All of these negative experiences that I have been through are what really shaped me to be the person, have the vision, positive mindset, and attributes that I have written about in the past. All of my growth has come from seeking help from others after periods of pain. If I have never had Jake as a brother, I would have had no reason to go deeper, I would have never cultivated the positive attributes, I would have never learned what I am grateful I have learned. I still have a lot of room to grow, but I am on my way. I still have reverberations of my trauma’s that are linked to previous thought patterns, but I am working on them. Every day in every way I am getting closer to shedding the beliefs that have held me back.

It took me a while to get here, but I was eventually able to see the rays of sunshine through the clouds. This allowed me to be open-minded and learn the value in being different, in being unique, and in being a little bit crazy. Things I could’ve learned from Jake a long, long time ago. I spent so much time and energy in trying to be normal to differentiate myself from Jake by suppressing everything that made me unique when all along I should have been striving to be more like him. As Steve Jobs said, “The people who are crazy enough to think they can change the world are the ones who do.”

I am sharing this post with the world because I now know that the purpose of emotions is to share them and I want everyone else to see that too. We are not supposed to teach ourselves how to shut them down. It might be crazy, but I believe if we all understand this as well we can strengthen and grow each individual and the collective consciousness paving the way for more free-will and positive energy to come into everyone’s life. There is value in all emotions, and there are healthy ways to deal with the bad ones; shunning them is not one of them. Check in with the moment, feel your feelings, and step towards healthy self-expression little by little until you are able to acknowledge and share your own experience with the world. I hope that through reading this you have realized that you don’t have to go through life alone, that the past is not permanent and neither is your current life situation, that everything is better when you open yourself up and allow others to partake in your life. There are people that want to help and be there for you in times of distress, I promise.

PS. This post was inspired by the book The Normal One: Life with a Difficult or Damaged Sibling by Jeanne Safer, Ph.D., the stand-up special 3 mics by Neal Brennan, and the Disney movie Inside Out. I highly encourage everyone that has a troubled sibling and/or depression, to check out these resources. If you would like any other resources, send an email to thejustproject@gmail.com with the subject “RESOURCES.” Give me a little summary of what you are going through and I will do my best to provide resources that I think might help.

PPS. I did not write this for any modicum of attention — as I already said, I’m not terribly fond of it — I wrote this for the countless people that have been affected by a damaged sibling and/or are struggling with depression, so please do not pity me. Everything above I have come to terms with, and I am okay now. I have made and found peace with all of this. I am not complaining about my life situation; I am simply acknowledging some of the universal difficulties that come with having a troubled sibling. That being said I wrote this for anyone that isn’t doing so well and is currently or has struggled with their life situation and hasn’t found the tools to feel comfortable discussing their issues. If you think this post will help someone please share it with them to let them know that their negative feelings are not abnormal, should not be shunned, that they are not alone, and that talking it out in a healthy way can help tremendously. If anyone is feeling negative or unsure where to turn I would be more than happy to lend an ear and share any advice on how I came to terms with all of this, if you would want that. Please do not hesitate to reach out.

PPPS. I am currently working on a booklet of my own with prompts that you answer to get a better understanding of your inner workings. If you would like to be notified when this is released send an email to thejustproject@gmail.com with the subject “WHO AM I” and I will send you the finished copy as soon as it is.

PPPPS. I love you Jake and I always will, thank you for being you.