For me, learning about autism has been a process – one informed by community. Being a blogger, and interacting with others in the wider community has taught me things I would never have learned otherwise – some of it uncomfortable. Especially when it brings me face to face with my own shortcomings.
The network I’ve built since I first started blogging in 2005 is a diverse and passionate one – with a lot of differing opinions and approaches. There are times when I feel challenged as to where in that community I fit in, yet I can say that despite how challenging they can be, the difficulties and conflicts have helped me. They’ve forced me to look at other peoples’ perspectives, challenge my own biases, to constantly drive myself to do better, and to put a great deal of thought as to what “better” really means to me, and to the wider world.
One area that my fellow bloggers have challenged me in is in the area of trauma. Trauma is something I haven’t seen much mentioned in the mainstream media with regard to autism. If it is, it’s usually mentioned in a second-hand way – about the stress others feel as a result of our being in their lives. This has always felt one-sided to me, because many of the factors cited in such coverage are a product of trauma in US. Why is it that people can feel compassion for our family members who experience trauma, yet ignore we are also suffering as well?
This is a question that many in my blogging circle have set themselves to working to address – because we do experience trauma, and the world isn’t going to get any better for us or our families until we can address that trauma. Sometimes, though, people disagree with what needs to be done to mitigate such trauma. But also I think there are other forces at work – and one is stigma. It’s a factor that only comes to mind, because it’s something I’ve faced firsthand.
It’s a common thing among autism advocates to write about trauma, and ways that we can be sensitive to those who are struggling to deal with the aftermath of traumatic events. Frequently, I’ve found myself challenged by these posts, and I’ve had a hard time figuring out why and really what those feelings were. Was it bias? Judgment? Disagreement with their approach? I couldn’t really tell.
It’s not as if I’m not familiar with trauma – I’ve dealt with all different kinds of it, both directly and second hand. By the time I was 19, I’d been hit by a car twice. I’d faced the possibility of being taken away from my family. I’d moved halfway across the country, away from anyone and everyone I’d ever known. I’d faced violent bullying. There were health crises, motorcycle accidents – loved ones experiencing things like cancer, heart attacks, and congestive heart failure. I’d watched loved ones wrestle with substance abuse. I remember spending my teens feeling old; worn out. If this was what life was like when I was young – I couldn’t imagine what adulthood would be like.
So, being that I was not a stranger to trauma, what was this resistance about, and why was it there? After spending some time thinking about this, I found myself facing a memory that just wouldn’t go away. It occurred when I was about ten years old, just after my father and I had moved back to his hometown and the bullying had begun. Driving home from day care one evening, my father had asked me about my day, and I broke down crying, explaining to him all that had happened to me that day. I was hurt, confused, and deeply struggling to make sense of everything. I was still crying when we walked into the back door of my grandmother’s house and took off our coat and shoes.
My father stood with me, rubbing my back and comforting me when my grandmother stormed up to us from the direction of the kitchen. “You stop crying!” She burst out at me, wagging her finger. “You stop crying or you can go to your room!” My father and I were both taken off guard, and froze for a moment. I was confused…my grandmother was normally such a soft-hearted and caring person. Surely she must have misunderstood something about the situation, or else why would she be so angry with me? I stumblingly tried to explain why I was upset and what had happened.
“I don’t care!” She exclaimed, “They made fun of me too. My mother made me wear long underwear underneath my dresses and I was teased and beaten up every day. I was never allowed to cry, and you shouldn’t either. If you can’t pull yourself together, you can go to your room!” Stunned, I ran off to my little hide-a-bed in her laundry room, slumped down, and cried like I’d never cried before, feeling more alone than I’d ever felt before. What was this world that I was living in, where physically and verbally assaulting another human being was perfectly OK, but expressing pain at such treatment was punished? How was I supposed to NOT be upset?
Fortunately, I wasn’t alone. As I cowered in my bedroom crying, there were raised voices in the kitchen. My father wasn’t letting my grandmother’s treatment of me fly. He’d learned how hard it was for me to express myself and how important it was for me to do so. He’d been bullied too, and he knew what it felt like. He recognized that it was abuse, and wasn’t going to let anyone squelch my right to express my feelings over being abused. Not even his mother.
For the most part, he was successful. To my recollection, we never had to have that conversation again…but despite his efforts, to some degree the damage had already been done. I’d already learned to associate trauma with expressing trauma. And, when I look back, I can see how that mindset affected how I handled later traumas. I learned to deal with the facts of a traumatic event – but often felt a pressure to avoid the emotional impact of said events. I felt the pressure to be “OK” and judged myself as having failed if I did not.
A few years later, when I was hit by a car for the first time, I didn’t cry. My first response to be embarrassed inconveniencing so many people. My initial instinct was to get up, run away and hide somewhere. Fortunately or unfortunately, my injuries made that impossible and I was taken to the hospital. Later my parents brought a phone into my room so that I could call my mother. I dialed the phone, and my stepfather answered.
I suddenly knew something was terribly, terribly wrong. My stepfather despised the telephone. My mother screened every call. There were only two people whose calls he would take: my stepsister and his mother, when she was alive. “Oh, Lynne.” He said, “I was just about to call you!” This only confirmed my fears. My stepfather was even less likely to voluntarily make an outgoing call than to answer an incoming call. I tamped down inner panic and tried to keep my voice steady, as I said, “Really? What’s going on?”
“You remember when you were here over Christmas and your mom was sick? Well, she didn’t get better. Today I told her something was wrong…and she should go to the doctor. The flu isn’t supposed to last three weeks. Long story short – she’s in the hospital.” I felt a hysterical urge to giggle, but didn’t. “What’s going on with you?” He asked. I told him I was in the hospital, too. I don’t remember what he said next, nor do I remember what I told my father and stepmother, although I assume I told them what had been said. I don’t remember much at all of the days after that – except a vague feeling of going through the motions. There wasn’t anything I could for my mom when I couldn’t even go to the bathroom on my own – and she couldn’t do anything for me, shut away in a hospital hooked up to IVs.
I don’t remember crying about any of it. I don’t remember talking about any of it, except about the bare facts of what had happened in the accident. I remember trying to make sense of it and figure out my feelings – but these weren’t things that people asked about. When I went to the doctor, no-one asked me about my emotional state – recovery was measured in how well my bones were knitting and how fast my lacerations were closed. No one asked me if I still had visions of watching my own blood pool on my backpack and slowly ooze through the gutters along with January’s grey snow, as I lay face down in the street. Or if I woke up at night seeing the concrete curb hurtling toward my face. Or if I heard the driver’s scream, and felt his pain and fear as if it were my own. It just wasn’t asked, and I’d learned not to expect it to be.
My focus was where I thought everyone wanted it to be – on how fast I could heal, and how quickly I could walk. As soon as I was medically able, I was out there taking "walks" around my neighborhood with my little dog trotting along beside me in little undulating arcs to avoid being hit by my crutches. My neighbors thought it was funny, and everybody seemed to take that as a sign that everything would be alright. I was healing, at least in body…but what about my emotions?
That was another story.
TO BE CONTINUED....
Managing Strong Emotional Reactions to Traumatic Events: Tips for Parents and Teachers
Our society has been plagued by a number of traumatic events in recent years—schoolyard shootings, the Oklahoma City bombing, floods and tornadoes, and the terrorist attacks of September 2001. When a large-scale tragedy occurs, it can cause strong and deeply felt reactions in adults and children. How adults express their emotions will influence the reactions of children and youth. Parents and teachers can help youngsters manage their feelings by both modeling healthy coping strategies themselves and closely monitoring their own emotional state and that of the children in their care.