The Aspie Who Came in From the Cold

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In the summer of 2011, I was looking for a job. I received an email from a friend whom I used to work with. Elizabeth was now working at a different office, and she invited me to meet her co-workers and apply for an open clerical job.

The next day, I showed up wearing a beautiful navy blue suit, and armed with copies of my resume. My friend hugged me and introduced me to a coworker. The co-worker asked me how I knew Elizabeth, so I told her we used to work together and how great Elizabeth was. The co-worker said, “Oh she’s not that great.” I countered, “Yes, she is.” The co-worker responded, “In fact, Elizabeth is kind of a slacker.” I told the co-worker she must be misreading Elizabeth. After we went back and forth a few times, I realized the co-worker was kidding and now seemed impatient. I quickly added, “Yeah, Elizabeth really isn’t that great.” I felt everyone was relieved. Then the co-worker said something about what she was working on, but I kept talking about Elizabeth, until I realized the co-worker had turned away. I’d missed the signal that she was done talking.

Later, I met Elizabeth’s boss. We also talked about how great Elizabeth was. Again, I kept talking and realized too late that she had already signaled we were done with our conversation. She seemed annoyed.

Afterward, Elizabeth and I sat down to eat our sandwiches. Again, I was slow in interpreting her signals, constantly trying to catch up. By the end of the lunch, I felt exhausted. A dense fog had settled in my brain.

I drove home and thought about how I’ve never been able to keep a job for long, despite being bright, skilled, conscientious, resourceful and eager to help. At work, I felt as if people inexplicably became irritated with me. It felt as if they were watching me and looking for more evidence to support their dissatisfaction with me. Then it seemed as if others would notice and adjust their perception of me. Sometimes I felt people would go out of their way to openly ridicule and harass me. Even clueless me couldn’t help but sense the growing number of hostile co-workers, but I could never figure out what happened, much less what to do. I could almost hear my gentle, grouchy dad yelling, “Don’t you have any common sense?”

My childhood was no better; I was ridiculed at school. In sixth grade, a girl asked me, dismayed, “Why are you so goofy?” I read countless psychology and self-help books, searching for the right formula on how to interact with people. Sometimes, I would share my difficulties with family or the occasional friend, but they said I brought it on myself or I had a “persecution complex.” So I learned to keep my mouth shut. Yet I kept reading books, trying to figure out what I was doing wrong. Deep down, I was terrified I’d never be able to fix it or figure it out. I thought I was doomed to be an outcast, never understood and never loved. As more and more years passed, I eventually let go of the wistful hope that people would be nicer once they got to know the real me.

After I got home from visiting Elizabeth, I made coffee to help with the brain fog and tried to make an inventory of past job failures. This time, however, a new piece of information was emerging: I was missing social cues, and people were continually getting angry or irritated when I missed them.

With this new information in mind, I thought of all my previous experiences; suddenly, they made sense. I started to see a bigger picture and felt relief from finally understanding how, over the past 50-plus years, people misunderstood and disliked me. But I also felt an overwhelming grief as I tallied all the losses. Why had I never done the mental math to see this?

I already knew the answer. I stopped doing the math of adding all my failures over 30 years ago. At the time, I was in my 20s.

Because of my poor people skills, I could only get temp jobs at what seemed like the worst dysfunctional corporate environments. I got the jobs nobody else wanted. One day, my supervisor — speaking in what sounded to me as incomprehensible code — seemed to condemn me for something I couldn’t figure out, and two of my co-workers ridiculed me in the elevator. I had no clue what was going on, or even what to ask.

That night, like every night, I lay awake, tensely sifting through the day’s poisonous failures — my daily futile search to understand what happened. Cringing, feeling the years of shame and failure eating away at my life force, my life spiraling downward. The way people treated me seemed to be getting worse and I had no idea why; I felt very alone and scared. I wondered how I was going to keep heart and the will to keep going.

I’d start a new job thinking, “This time, someone will finally notice how much I give.” But eventually they’d forget all those times I’d eagerly volunteer my help without hesitation, gladly share my skills and knowledge, and work hard to get things done. It was as if they never noticed how I treated everyone with kindness, pitched in with my best ideas, volunteered for the most unpleasant menial tasks, even acknowledge my clumsy attempts to be friendly. I was afraid eventually my self-esteem and hopes for a new beginning would be destroyed by the constant and unrelenting misunderstanding and scorn from others. My psyche would be scrambled and confused, and depression and shame would affect my ability to do a good job. By then, they’d be justified in firing me.

So that night as a young 20-something, I thought of an ingenious solution: If I ignored all the abusive words, acts and attitudes from other people, I could keep moving. Even better, I could pretend that my shame and failures did not exist. I must never look back. If shame or failure dared to creep into my mind, I’d quickly shove them out, close my mind, and refuse to listen. They were banished, just like that.

From then on, it was a Sisyphean task to shut up those evil twins: Shame and Failure. Although they kept grabbing at me, night and day, I never allowed myself the slightest peek, knowing that my spirit wouldn’t survive. If there were ever an Olympic contest for shutting things out, I would have won.

To help drown out jeers and accusations from the “twins,” I began to live for tomorrow, looking only at future possibilities where I could squeeze out bits of borrowed hope and happiness. If someone was rude to me, I’d focus on kinder people or things to come. If I lost a job, I’d get another one.

From that night on, and for the next 30-plus years, I was always running — constantly one step ahead, frantically trying to stay out of reach from the poisonous clutch of Fear and Shame.

So there I was, sitting and drinking coffee, looking over the past wreck of my life and my failed experiment in tunnel vision wondering, “What the hell am I going to do?”

I couldn’t simply tell everyone up front, “Hello. Pleased to meet you. By the way, I miss cues so, if I piss you off, I apologize in advance.”

That wasn’t going to cut the mustard.

I didn’t yet know about autism. In the mid-90s, in my experience, most people in my generation were only somewhat aware of autism. I was over 30 years old, and I was thrilled that I’d finally figured out most of what I was missing; it was only a matter of time before I’d have the formula for how to interact with people. My search was almost over. It buoyed the hope that someday my life might get better. I was tired of running away. But how could I fix my life? I felt like the solution — and a wonderful new life — were just beyond reach. If I could only figure out what to do with the new puzzle piece of missing social cues. What else was I missing?

To find the solution, I needed to figure out exactly what the hell was going on. I looked more closely at the problem.

I remembered back to when I was 19 years old, working as a clerk. Even back then, I was under siege every day, a typical day for me was filled with confusing moments. In a rare, beautiful moment — before I messed it up — a kind, older woman told me about how her job was being posted for application, although she wanted to keep it. I immediately told her I’d apply for it, because I knew I was expected to be competitive. She gave me a strange look. I was already accustomed to strange looks by then, so I just mentally tossed it into the ever-growing pile of “inexplicable stuff I’ll never figure out.” A week or two later, however, I realized that I had betrayed her gesture of friendliness. She shared something with me about her life, and I threw it back in her face. I wanted to apologize, but by then, I could see in her face that familiar look of estrangement and wariness I had come to expect from everyone. Besides, what could I say?

I reviewed the incident even more closely, I said something thoughtless although I knew better. Also, I noticed her strange look, which gave me a signal. However, I didn’t interpret her signal until much later, when it was far too late to prevent it. Bingo! There was a delay in my central processing unit.

I realized there would never be a solution to this problem. My wonderful new life came to a grinding halt. I realized I would continue to miss literally millions of moments to connect with others. Relating to other people was always going to be difficult and perilous. My SAT scores were among the top 5 percent in the U.S; my people skills, the lowest 5 percent.

I looked at all the devastation and waste spanning all the years of my life. At least the shame was gone, it could no longer grind me down and tell me, “it’s your fault,” for all the times I said and did the wrong things and made bad decisions. The shame had lost its power, and for the first time in my life, my spirit felt lighter, freed from the Sisyphean task of smothering the cries from so many bad experiences. I simply wasn’t going to swallow all that blame and shame any more. Plus, I knew what to look out for, so I could take steps to reduce the damages.

The job at my friend’s office never materialized, but that was OK because I had a new job — to repair my life. For the first time in years, I felt hope for my future. In order to get help, I besieged my HMO with countless requests. Finally, in 2013, I was diagnosed with Asperger’s, ADD and post-traumatic stress disorder (PTSD).

These days, I’m training myself to recognize more social cues. I still struggle daily to speak up so my silence or ill-chosen words are not interpreted as uncaring or even harmful. I also struggle to filter out what I shouldn’t say.

However, I no longer wake up in the morning dreading another onslaught of sneers, snubs, slights, dislikes and insults. I’m slowly beginning to trust people won’t inevitably turn on me. Now I console myself and say, “Hey, maybe you missed it this time, but you’re getting better at responding to cues.”

Unfortunately, my diagnosis came too late for my 27-year marriage. I had thought that, aside from the occasional tiff, we got along beautifully. My husband’s departure was a complete surprise. How did I miss all the clues? Was it because I had become a master at tuning out the lifelong parade of negative feedback and setbacks? One thing I understand now is that I never shared with him the details of my daily living hell, because I never wanted him to see me through the eyes of others.

I hope when others encounter people like me, they look beyond our silence and our clumsy words.

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What a Conversation About 'Hamilton' Reminded Me About My Son With Asperger's

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“Mom, do you think Alexander Hamilton had Asperger’s?” my 12-year-old son asked while we drove and listened to the soundtrack of the musical, “Hamilton.” At first his question surprised me, I’d never thought about it. There were no diagnoses back then for autism.

I responded, “Well, Jack, what do we know about him?” We talked about the things we knew about Hamilton and his life: how driven he was, how stubborn he was, how keenly focused he was.

The “Hamilton” soundtrack has been playing continuously in our home, car, and iPods for the past 10 months. My son, Jack, who has Asperger’s, has embraced the musical and Alexander on a deep level. That’s what a good musical does — it touches something inside of us. What was remarkable to me about this particular conversation was hearing how my kids described the positive characteristics of Hamilton, because it aligned with how they think of themselves.

Jack, who was diagnosed at the age of 7, has known about his diagnosis for several years. He accepts his autism. For him, it’s like having blue eyes — a feature of who he is.  But this was not how we started off; at the beginning, I felt it was a lot harder for Jack to acknowledge his disability. Due to circumstances that led up to Jack’s diagnosis, he thought he was a bad kid. When we told him he had Asperger’s, he took it as, “something was wrong with him.”

He was not alone in seeing his differences. Prior to his diagnosis, I was jotting down, examining and reporting to the many professionals how Jack was different. His differences were highlighted at school and at home. Unknowingly, we were making him feel the pressure of trying to be someone he was not. Once we had a diagnosis of Asperger’s syndrome, professionals could now help him understand his internal wiring and address the underlying causes for his behavior. Once I saw the full picture of Jack, I educated myself and found compassion and understanding. My anxiety lessened, and I could see his strengths. In so many ways his differences were not deficits, they were assets.

Fast-forward to the present moment, after years of learning about his diagnoses, (autism, attention-deficit hyperactivity disorder, sensory processing disorder and dyslexia), he has integrated these features about himself, pulling out good things. What he sees in Hamilton — he may see in himself. He’s driven, perseveres through challenges and says what’s on his mind. He’s passionate and has a profound belief in right and wrong. We were not really diagnosing Alexander Hamilton, but talking about him was a way for my son to see worth in himself.

I can see how Jack has reached a level of self-awareness and self-acceptance that seemed like a dream three years ago. It’s a powerful example of how we can change our perspectives on how we view differences by shining a light on the positive aspects. I believe this has given Jack confidence and permission to be who he really is — an amazing young man with endless possibilities.

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Photo credit Hamilton: An American Musical Facebook page

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Getting an Asperger's Diagnosis as a 19-Year-Old

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For 19 years, I felt like a pufferfish in a pond of goldfish. Always defensive of myself, always trying to stay out of trouble, and for the most part not playing with people on the playground.

I was teased for my huge obsession with the Jonas Brothers, and my consistent talking about them pushed people away from me. No one seemed to want to hang out with the girl who only wanted to talk about this one subject. I never quite understood why people didn’t ask me to hang out as often as they asked their other friends to hang out. A lot of times they didn’t put any effort to hang out with me at all. I was always the person asking and constantly being turned down because they already had plans or they had to do something with their family. Somehow I was never able to ask at the right time.

Although I got along fine with adults, and could get along well with students when I wasn’t obsessing about the Jonas Brothers or something else, I often found myself turning to adults more than kids my own age to engage in conversation. I struggled to see when it was becoming too much.

After having struggled through my first semester of college both socially and academically, I was diagnosed with Asperger’s. I finally had an explanation for my intense interests and my social struggles. I chose to embrace my Asperger’s and learn more about it. I wanted to be fully aware of my struggles and my strengths, and I wanted to make people more aware of what it means to be an Aspie.

I don’t want people to feel sorry for Aspies and other people on the autism spectrum, I want people to accept and learn from people on the spectrum.

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What Growing Up With Asperger's Was Like for Me

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I have always felt I was “different.” Different in the way I think, the way I feel, and the way I act. My life has been a roller coaster, having the anticipation as I climb the hill and the rush of adrenaline as I race down. There have been times when I have been so stressed the world seemed to have ended, and other times when I have been so calm the world seemed to have escaped from me. This has been my life, but there is more to it than just that.

Throughout my life, there has been affection and there has been rejection. Bliss and despair have contrasted themselves so divinely. These memories have both haunted me and delighted me in every sense. And in my short 16 years, I have witnessed many things, some of which no one should ever go through.

My life was just beginning; I was in preschool, and I considered everyone to be my friend. I was naïve, but so were my classmates. No one was quick to judge, and everyone seemed to care. But as my preschool life ended and I was sent off to grade school, my spirit started to change. After that point, I didn’t really have any close friends. I was a loner, independent in my school work and in my social life, whether I wanted to be or not. People may have avoided me because I was different, or maybe because I couldn’t look them in the eye, and it seemed like whenever I started getting into a relationship with someone, my family would move. When I became a second grader, my family moved into the house that we have lived in since. That was the point where I learned how cruel people can be.

Then eventually, middle school came. In middle school there were communities, each a separate group, a separate clan. If, by chance, someone was not a part of a particular clan, that person would be unknown by them, but hated just the same. Because of this, every day was an eternity for me. Everyone was changing around me, and I was finally exposed to the bona fide cruelty that can be harbored in people’s hearts. Judgment came and I was alone, singled out because I was alien to others; some even called me by that name. But middle school came and went; the clans were broken up, and life went on.

Now that I have completed two semesters in college, which occurred while I was in high school, my life is being transformed. All around me, things have been changing, and there are new things to experience. There is still disgust for those who stray from the norm. But despite that fact, my familiarity with being face-to-face with this kind of shunning has made me no longer afraid of what people think about me. I always speak my mind — about injustices, about my beliefs, and about my intimacy with life, not worrying about being judged or about being hated; I just want to be me.

Some people may believe I cannot be successful in life because of “what I am,” without thinking about “who I am.” Growing up with Asperger’s syndrome has been rough. When I was diagnosed in the fall of 2007, all of the pieces finally came together. I desire to convey that those of us with autism spectrum disorders are not a “one size fits all” kind of thing; we are all different and unique. Many people may try to understand what I go through, or what others who are under the veil experience, but, in the words of Emerson, “To be great is to be misunderstood,” and that rings true in every part of my soul.

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A version of this post originally appeared on The Monty Freak.

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When a Nightmare Reawakened a Fear I Had Before My Asperger’s Diagnosis

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I had a terrible nightmare a few months ago. It was strange, because I never really have nightmares. I actually have very vivid, lucid dreams nightly. I have a certain amount of control over my dreams that actually makes them quite fun. But this one… was different. It really shook me up. Literally, I could feel myself physically moving in my bed during the dream, which is a strange sensation. Normally I’m able to change dreams when they get bad, but that wasn’t the case this time around. I tried… but no matter what I did, it only got worse.

That part, at least, felt familiar. In grade school I struggled to be accepted socially, but no matter what I did, it seemed to only make things worse. I tried so hard to make friends, but had very little luck, and was always worried I’d lose the few I had. Which brings me back to my nightmare. In it, I was back in grade school. I was back to trying to make friends. And I was back to failing miserably. In the dream I turned to my parents, my constant source of support, for help. In the dream, I asked my mom, “Am I annoying? Do you hate me like the other kids do? Am I too annoying for you?” Of course, since I’m describing this as a nightmare, you can probably guess her response. In the dream, both my parents said they were done with me. They were sick of me. They wanted nothing more to do with me. And it killed me.

I mean, I knew it was a dream. As real as my dreams feel, I always know they’re dreams (also, this one took place in what looked like a stained glass circus tent, so that’s a good clue). But it still hurt. I spent the rest of the dream wailing, trying desperately to fix what I felt I’d broken. The other children went on to tease me because my parents didn’t love me anymore. My parents were desperately trying to avoid me. I could actually feel myself flailing in my bed at this point. I was thrashing violently as the mental and emotional struggle became physical. I thought I could still fix this dream. I became determined and stubborn. I wasn’t going to wake up, I had to fix this. I ran around from kid to kid, in hopes of finding support, but in the end they all turned away or added to my pain.

I woke up early in the morning feeling quite shaken. When most people awake from a nightmare, it often takes them a moment to realize it was only a dream, and then they quickly regain their composure and move on. But that didn’t happen. This nightmare had reawakened something in me. It brought back an old fear I had that I hadn’t thought about for years. As I mentioned, I struggled quite a bit in grade school. I often ended up getting disciplined in school because of it. I wasn’t diagnosed with Asperger’s yet, and I’m sure I came off to many of the teachers and other employees at the school as simply a brat, a “bad kid,” as some of them actually called me. And when enough people think of you as a bad kid, you begin to wonder if you are a bad kid.

I never spoke to my parents about it, and I’ve since long forgotten about it, but at the time I was so scared my mom and dad would give up on me. We tried so hard to get help, and I wanted so badly to get “fixed.” And I tried. Oh, God, did I try. But I didn’t know what was “broken,” so I didn’t know how to “fix” it. All the time this was happening I thought I was so, so incredibly lucky to have the amazing parents I did. And, sometimes, when I was really upset or struggling… I worried they’d realize what I already thought — they deserved better. There were times I was terrified they would just give up on me and that I would be left with no one. I often felt like teachers or therapists gave up on me… so why wouldn’t my parents?

Of course, when I tell my mom about this, she saw it very differently. When I was struggling, she says she felt like I deserved better and that they were failing me. It’s funny how we both looked at the same situation and saw it so differently. We both blamed ourselves. The situations was no one’s fault, though. It was just a series of misunderstandings and misdiagnoses that led to a lot of confusion and frustration. But we came through it, and it made us stronger. In the end, I know my parents got the right child for them, and I got the perfect parents for me. Even if it didn’t always feel that way.

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When I Say 'Too Much' as Someone With Asperger's Syndrome and Social Anxiety

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I think everyone experiences this. I know I sure have. Being someone who is deeply invested in my thoughts and feelings about things, I have a tendency to get a little carried away. As I’ve seen to be a common experience among many people with Asperger’s syndrome, I tend to have no idea when I’ve said too much.

This usually means I’ve talked on and on about something and people stopped listening, or more often, I’ve said something to get myself into trouble.

While this experience of… well, shooting my mouth off has been stressful, frustrating and even embarrassing, at times I find myself proud. Of course, that may sound odd. But as someone who stuttered and was nearly mute in public for almost 10 years, these situations are an accomplishment to me. I don’t remember when I first started to become socially anxious rather than just shy, but it took me years to overcome it. To this day, I whisper and stutter when I order food, my voice goes up an octave when I’m on the phone, I stutter during presentations and mumble when I’m talking to a group. But to have a voice, even a small one, is a huge step.

So yes, that lack of a “You said your piece” switch can be exhausting. But I believe it is also that lack of said switch that has helped me grow. Had I not been born with Asperger’s, maybe I wouldn’t feel as strongly about things as I do. Maybe I wouldn’t be the young woman I am. And maybe if I didn’t get so overwhelmed with people forcing their emotions on my shoulders, I wouldn’t be able to speak even now.

I think, to an extent, Asperger’s and social anxiety can go hand in hand. They can clash, most definitely, in some ways. But I think that’s what make can people who experience both so utterly fascinating. I think when these people find a strength in their voice, we need to encourage them. Not dismiss or scold the behavior. That won’t help or change a thing. It has never done me any favors to be told, “Rachel! You can’t do that! It’s not socially acceptable!” or to be told, “Rachel, no one’s listening, no one cares.”

What I’m trying to say is this: If someone you know is like this, quietly encourage them to say “too much.” I think it can be good for everyone. Those new voices could quite possibly change a lot of things. We’ve got to wait and see.

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