Loving What You Hate and Hating What You Love
For an autistic person, pain and pleasure can intertwine.
Posted September 7, 2015
Telling your own story — it seems so simple. Just a recounting of facts and perceptions. Yet, what blogging has taught me is that it’s more complicated than that. Blogging has benefited me in many surprising ways.
Writing about my thoughts and experiences publicly has led to conversations, both public and private, that have led to profound realizations for me. Realizations that help me to understand my own life and my own psyche. In many ways, it has helped me to see my own life more clearly.
An example of this came about after my March post on the pain of grocery shopping. To date, it’s one of my more popular posts, but the most interesting effects that it had was not public, but private. Interestingly enough, after 20 years with me, my own husband didn’t know the extent of what it felt like for me to grocery shop. It led to an interesting conversation.
When I write about my experiences, I am often curious about what a nonautistic person’s perspective on the experience might be. For that perspective, the first person I turn to is my husband. So, after I wrote the post, I asked him to read it. His immediate response was a trademark quip, “I’d just go to Peapod.”
I was amused but intrigued at the same time. I asked him to elaborate. “I had no idea.” He said. “If I had to experience that, I don’t think I could deal with it. I said it jokingly, but I think I really would go to Peapod.” We went on to discuss aspects of my experience that I hadn’t even thought to relate to him verbally. My blogging career has been full of moments like that. They are gifts in and of themselves, but it doesn’t stop there.
Somewhere in the middle of our conversation a thought hit me — “Why don’t I just go to Peapod?” The answer came quickly, but it was confusing. Despite the fact that I’d just written an essay on how painful a shopping experience can be, when I thought of abandoning the practice, I realized that I’d miss it. That seems a strange contradiction.
The more I thought about it, the more I realized how emblematic that is for my life. It seems a common thread that I tend to love the things I hate and hate the things I love. Most activities I enjoy have some component of pain and vice versa. And it also seems that a lot of that has to do with autism, namely problems socializing and sensory sensitivity.
When it comes to the social world, my feelings have frequently been conflicted. There’ve been many times I have wondered if I am not an extrovert in an introvert’s body. Going back to my earliest memories, they are dominated with an interest in other human beings. But slowly, over time, those feelings became dampened, replaced by a wariness born of an awareness of how my attempts at connection were received. A fear of pain and of rejection.
As a result, my feelings have solidified into the knowledge that the desire to socialize is not the same as successfully socializing. The gap between my feelings and my skills is a painful one, one that despite all I’ve learned and experienced, never seems to fully go away. It’s a gap that in many ways, controls my life.
Early in our relationship, a common source of strife between my husband and I was the fact that I tended to avoid going outside. The suburban weekend experience of taking care of the yard was something that he enjoyed. It was a chance to work off of his frustrations of the week and to connect with the neighbors. It was frustrating to him that I couldn’t or wouldn’t join in.
My behavior could have been taken in many ways (and often was), but here’s the truth. As much as I found excuses not to go outside, I also deeply missed it. My most cherished memories of growing up were all involved with the outdoors — biking, hiking, connecting with nature. But the world of long hours in some dark artificially lighted workspace didn’t leave much time for those types of activities. The weekend was my chance to indulge my love for the outdoors. So why did I avoid it?
In the neighborhoods where we lived, yard work was not a solitary endeavor. Growing up, what yards we had were often shielded from the neighbors, or social convention simply dictated that you pretended to not see one another when in them. In these neighborhoods, however, it wasn’t enough to simply go outside and plant some flowers. The ritual known as “working in the yard” came with confusing rules, and painful missteps that I came to dread with every fiber of my being.
Without an understanding of autism to explain all of this, my husband interpreted this as, “You hate to go outside.” A sentiment that, when he dared to voice it, always prompted conflict. Because, deep down, I hated the restriction that my social limitations placed upon me. It wasn’t that I hated being outdoors, I hated being outdoors in that context.
What was, for him, an easy and enjoyable afternoon experience felt very different to me. He would go outside, begin mowing, run into someone, stop and have a chat, then go on mowing. He always knew what to say. How to say it. I never did. Going how to plant flowers felt like running the gauntlet. I could never tell which of my neighbors would see me and try to talk with me or what they would try to talk to me about.
Since much of my social speech is dependant upon scripting, this lack of structure meant I was far too often left a loss. It often felt as if people were waiting in the bushes, waiting to surprise me with complicated calculus problems that I was expected to solve on the spot. With dire social consequences should I fail. It was exhausting.
Shopping was similar. I have many fond memories of shopping over the years. Because, like yard work, shopping can be a social ritual. One often used in families and groups of female friends as opportunities to connect. In the right context — I enjoy it. In fact, on days when I’m particularly lonely, I sometimes take comfort in it — if other triggers don’t interfere. The superficial contact between store clerks and casual shoppers is one that I have scripts for, and has few consequences if you fail.
On the other hand, some of my more painful memories are of shopping. I remember, for example, one of the first holiday seasons after my father remarried. It was the tradition among the females of the family to do an all day shopping marathon that began in the wee hours of the morning, the day after Thanksgiving and only ended when the stores closed. Eager to “fit in” with my new family, I joined in. It was traumatic enough that I don’t remember much, except pain.
Pain that coursed through my body as if my nerves were on fire. Pain the wouldn’t abate. Pain that I couldn’t escape — because nobody understood what it was, why I was feeling it, or that it should be taken seriously. I remember feeling desperate and trapped, with no way to get away from the pain or to leave. It was harrowing — something I never did again.
It wasn’t that I didn’t value the social connection that would have come from participating in one of my new family’s cherished social traditions, I wanted it badly. But the pain of the sensory onslaught blindsided me to an excruciating degree. Just thinking about it makes me sick to my stomach. I still can’t be sure to what degree they took it personally or if they still do.
When I look at what I love and what I hate, I find these dynamics are pretty typical. There is often an uncomfortable mix between the two...and that can be painful and confining. In my darker moments, there are times when this dynamic gets the better of me. When I fear that unalloyed joy or happiness is something that I will never feel. That I cannot escape pain.
In those moments, I imagine myself traveling in a dark landscape with nothing but mud for miles. It sticks to my legs, sucks them in. I have to fight to pull them free, until my muscles shake from the effort. As much the fatigue threatens, I cannot stop. If I stop, I will sink, and die. But there is no solid ground to be seen, no opportunity to rest. How long before my legs give out and the mud begins to win?
But then, there are the moments that surprise me. When someone, somewhere, gets it. Who gives me a rock to sit on. Makes it possible to rest.
And in that moment, I have all the hope in the world.
Look for my book, Living Independently on the Autism Spectrum, at most major retailers.