While I have always tried to be truthful and revelatory when writing posts for this blog, in this post I am probably speaking with the most candor, bluntness, and with the rawest language I have used in a long time. I don’t see the need for a trigger warning, except that I am speaking about negative events and feelings I have been keeping private for a long time. Also, I will be using more profanity that my readers are used to seeing here on WWA. If that doesn’t scare you, read on. I should warn you that some of this may not read very cohesively and might seem like a very long rant, but I have had a need for a long time to say some of these things.
Isolation and Loneliness
When I was a little girl, I was a veritable chatterbox. Some of my earliest memories from around age five or six involve inundating other children, people my family knew, and my own parents with an explosion of words – what I was thinking or feeling, what I had been reading, things I’d seen earlier in the day that I thought were really marvelous, spectacular, or even beautiful, and so forth. I’m even guessing that some of these were lengthy descriptions of something related to my Aspie “special interests”. I remember Dad having to tell me to stop chatting and eat my food at dinner, as I would stop eating at some points and just start talking.
You probably wouldn’t think that the above description fits me if you were to meet me today. Yes, it is true that I can be very opinionated and expressive. In the past, I’ve not hesitated to “put myself out there” in terms of my poetry, my experiences with being an Aspie, or other things that interest me (anyone that’s chatted with me online about The Doors can attest to this). However, within the last few years I have been finding myself feeling more isolated and lonely than I have since I was a teenager in the small town in which I grew up, trying to negotiate the social landscape.
Believing that it was not wise to allow too much personal information about myself on the Internet, I chose not to speak of my experiences and feelings in this regard until now. In and of itself, this would not be a big deal. However, events were going on in mine and my fiancé’s lives that only worked to add distrust and paranoia to our already growing sense isolation. Our family was certainly of no help and in many cases, caused the very problems we were experiencing. Other events upon which I do not care to elaborate began to make us feel even less secure and more fearful. Although it may not seem obvious to those who know me from the autism and poetry communities, I was beginning to feel the need to close myself off and withdraw. And that, my friends, was where I began to lose the idea that I understood or had a true grasp on reality.
What does this have to do with autism or Asperger’s? Plenty. I’m sure there are many autistics or Aspies reading this right now who can identify with the feelings of isolation and loneliness of which I speak. While I fight for the emphasis of the positive things that autism can bring to our lives – our unique talents and gifts that enrich ourselves, our families, and our societies – I also believe in authenticity and honesty in revealing my personal and unique autistic experience. We need to be honest about the loneliness and isolation we may feel plus the difficulties we experience while navigating a neurotypical world. I figure it’s been long overdue for me to talk about this in my own life.
There are several Star Trek characters with which I identify and in which I find little bits of myself: Odo of Deep Space 9 and Spock of the Original Series, as both of them are outsiders from the dominant culture in which they exist. Much to the possible consternation of some of my readers, I also mention Cmdr. Data, and here’s the reason why: I have been trying to understand human behavior since I was five or six years old. Human behavior, human motivations, human reasons – they all fascinate me and are for me the key to not only understanding others and myself. Perhaps that is why I enjoy exploring systematic approaches of explaining and defining different kinds of human personalities – the Enneagram and the Myers-Briggs typology system are among my favorites. But there are still some things I don’t understand and probably never will. Some human — dare I say it, some NT behavior — downright mystifies me to this day, and some of it I find just plain illogical and stupid. Researching current theories behind some human social behaviors has been enlightening some of the time, but it doesn’t erase the pain from being gossiped about, excluded or rejected.
My Asperger diagnosis three years ago was a blessing. I love discovering about and understanding myself – that has been my quest my entire life. I have always known that I was different, and I insist that knowing what made me different was a good thing and a step in the right direction. In fact, when others (mostly in the poetry community and on my job) still treated me the same as they did before my diagnosis, it began to reaffirm my faith in people. Had this state of affairs simply continued, I would probably not be writing this post right now – but unfortunately, family issues began to assert themselves with a real, raw ugliness that I can only describe as being like living with a vat of flaming camel shit which puts forth its stench daily in one’s living room. Our mental and emotional stability began to disappear and I found myself at times more sensitive to everything – florescent lighting, scratchy clothes, hot weather to name a few. In addition, we began to lose a great deal of sleep and as most autistics and Aspies reading this will know, lack of sleep only adds to the physical pain and discomfort one feels due to neurological overstimulation – not to mention the lack of sleep made it harder for me to think clearly and reasonably. I began to hate my Asperger’s: the concessions I felt I had to make for my neurological sensitivity, my meltdowns (which have become more frequent in the last two years), and one very large coping mechanism I had hidden from the world until I was diagnosed – the social “scripts” and the persona I had created in my quest as a teenager and young adult to, as Liane Holliday Willey put it, “pretending to be normal”.
The physical and emotional sensitivity I was experiencing, my internal emotional upheaval, and the slowly growing anger and rage I was feeling within myself were beginning to really scare me. I began resorting back to old tactics and returning to some of the early maladaptive schemas I’d adopted when I was younger, namely those in the over-vigilance and inhibition domain – for me this manifested as, “keep yourself under tight control or you will lose your shit and fuck things up for yourself and everyone else around you”. It also didn’t help that one of my family members was being irresponsible and causing emotional and financial problems for everyone in the house. I was so goddamned determined not to be like this woman that I began to shut my normal self down – a bad idea for anyone and an absolutely destructive idea for an autistic or Aspie. I also began to be more painfully aware of my difference – and my self-confidence began to fade. All of this made me go right back to doing the very negative tendency of “pretending to be normal” that I have been aware of and have been fighting ever since I knew I was an Aspie. And it began sending me down the road of isolation, loneliness, and paranoia.
“Clearly I Remember Picking on the Boy…”
Early next year, my fiancé and I will be making a video for “High School Jungle”, a poem about my own experiences of being bullied in school. While making plans to film this video, memories of what happened to me in school have been coming back in loud, full spectrum color (no pun intended) – memories that I have tried to put away but cannot. I have tried to “forgive and forget” and move on, but I realized this weekend that I am not ready to do this yet, despite the fact that it has been 19 years since I graduated high school. The major reason that I am not ready is that in my drive to “forgive and forget” I shoved all of the pain from those experiences onto the back burner within myself because I thought that it was ridiculous in my twenties and even my thirties to still be in pain over what happened to me at ages twelve, fourteen, sixteen, or even seventeen – I kept trying to deny that I even felt this pain or was even affected by those experiences. I realize now that I did a major disservice to myself and others by not speaking more openly about not only those experiences, but my own pain.
Some of these experiences from elementary school, junior high, and high school caused me to become a very angry young woman: picking fights, starting arguments for pure enjoyment, being obstinate and dogmatic, being uncooperative, and sometimes being just plain bitchy. If you had met me throughout my twenties and even my early thirties, you would have seen this as the worst side of me. I didn’t realize it until yesterday, but all of this was my way to lash back in retaliation for what had happened to me and sometimes I took out my rage on innocent people. For those of you reading this that I have hurt unjustly, please know that I am very sorry for causing you pain and ask for your forgiveness.
I mention all of this, too, because some of us Aspies and autistics are carrying pain from these experiences from our school days even now. How many of you tried to make friends in school and found that the person with whom you thought you might find friendship rejected you later – without any explanation of why (Lynn Soraya speaks of this very kind of experience in her life in this post on her Psychology Today blog)? How many of you never were able to make many – if any – good friends in the first place? How many of you tried to join into group activities with your classmates and were rejected or refused? How many of you were considered the “odd” or the “weird” one by your own families? Is it any wonder that as adults some of us have a hard time trusting people, find good and true friends, or even getting along socially to our own satisfaction as an adult, considering the kinds of experiences we had as children and teenagers?
So…Why Even Bother?
So with all of these negative kinds of experiences plus what one may encounter as an adult, it’s easy to find oneself asking the question, “Why even bother trying to connect with people?” I have found myself asking this question many times in my life, both as a teenager/young adult and even now as I near middle age. While there are a variety of autistic responses to the need for social interaction, communication, and human interpersonal connection, I am speaking purely from my own point of view of an Aspie who loves people and loves being around them – as I illustrated in my opening paragraph of my behavior as a child. So if I rephrase the above question in a more positive light, it transmutes into a clearly picture of the risk and reward of connecting with others: “Why is it worth risking personal pain to achieve human interpersonal connection?” Those of us who desire human interpersonal connection and who choose to ask ourselves this question must find our own individual answers to it. It has taken a great deal of internal prodding from my own heart plus encouragement from my fiancé to begin to even break out of thoughts of giving up and resisting tendencies towards self-destruction.
My fiancé has a saying: “Face your problems, take God with you, and you will win”. Curling myself up into an emotional and spiritual ball, or allowing myself to spiral downward towards further isolation and loneliness leading to self-destruction, will not solve my problems. While writing this, I thought of a quote from an interview with Pearl Jam’s frontman Eddie Vedder when he was asked about their song, “Jeremy”:
“…you kill yourself and you make a big old sacrifice and try to get your revenge. That all you’re gonna end up with is a paragraph in a newspaper. Sixty-three degrees and cloudy in a suburban neighborhood. That’s the beginning of the video and that’s the same thing is that in the end, it does nothing … nothing changes. The world goes on and you’re gone. The best revenge is to live on and prove yourself. Be stronger than those people. And then you can come back.”
I realized yesterday that I have a lot more to give to not only this world, but to those who love me and even to myself as well. I have been blessed by God and even despite the difficulties I have encountered would not trade these blessings or gifts for anything else in the world. I believe that I am stronger than those who bullied me; stronger than those members of my family who abused and hurt me; and stronger than coworkers, acquaintances, and former friends who tried to destroy me by gossip, lies, and “third party syndrome”. I said I was going to be honest and raw when I started writing this, so I’ll admit that there is a part of me that would love to say “fuck off” to those who have tried to hurt me or destroy me, but in the end, there is no point to struggling with them. My very existence is a victory. And I believe this is the same for anyone who is still here, despite the struggles and the pain, and who has not given up.
It’s a rather fitting irony that right now the words of one of my favorite poets and songwriters – Jim Morrison – are coming to mind: WAKE UP! And perhaps that is what I needed to do. I thought that hiding my pain would be a worthwhile action in order to help others see more positivity, but my lack of openness has only served to make me feel more isolated – as if I were the only one feeling this way. But I am not, judging from the conversations I have had with other Aspies and the personal experiences I have read of other Aspies and autistic folk. Being an Aspie is not all wonderful and sparkly – there are some darker aspects to my and other’s existences as autistic/Aspie people. Since I write and share my experiences as an Aspie woman of color because I need to understand, and be understood, I believe I need to be authentic in what I share – including the loneliness, the isolation, the paranoia, the anger and hurt that I feel because of bullying from my past, the fear of trusting people, the whole nine yards.
So this post has been a long time in coming – warts, profanity, and all. I am a human being, and it is MY choice, MY FUCKING CHOICE, as to whether I reach out, and to whom, and what I share – whether those things are the good, the bad, or the ugly. It does not matter how I am wired, how fucking strange I might seem, what color my skin is, whether or not I conform to a set of illogical, silly, and seemingly arbitrary sociocultural norms (you Black Aspies can probably relate to this statement most of all). I am not going to put myself into some fucking box to please people and/or make them feel more comfortable. What I will do is treat others as I would like to be treated and show others the same respect I would like to be given. I will be honest about my experiences not only as a human being, but as an Aspie as well –and sometimes, I am an angry Aspie with dark visions and messy emotions. And I do not need the validation of others to be that. But I reach out my hands to you readers and invite you in for discussion, sharing, and possibly human interpersonal connection…if you want it, within my capabilities and what time that my life and my personal boundaries allow me, I am here.
Thanks for reading.