This guest blog post is by Ann Kagarise. Ann is a writer, photographer and assistant director at a school for children with autism.
Safety was a topic of discussion during social skills class, at our school. Our students, on the spectrum, were asked where their safe places are, who their safe people are and how they feel when those safeties are removed. Hands went up around the classroom. Everyone wanted to have a voice on this topic. Collectively, one word was said when safeties are removed: FEAR. Other words used were "confused" and "lost." The more we talked, the more proud I was of these kids. What I heard was resilience, creativity, application, and perseverance to make it in this scary world around them.
Every day is a struggle for those of us on the spectrum.
Someone once asked me about the struggles of my day and I said well it begins with the first breath. I meant it to be funny, but in reality, the moment processing the world begins, struggle begins.
Anxiety is a word that comes with autism. People on the spectrum spend their days self-regulating and looking for "helps" to make sense of the world. I told the kids, my safest place is in my own bed, in my own bedroom, with the door locked AND with the knowledge that all my safe people are in place and that my comforts that calm are there as well. Hands went up. "Me too. me too," was heard around the room.
Tears were shed as some shared their fears of being alone in their own houses. "I can't be alone. I get too scared." The second a safety is removed, anxiety grows.
Why? I can only speak for myself. I know how to navigate in my safe bubble. I know what to do. I understand it. I know my routine. I understand the structure of my day and what is expected. Put me into an environment that has not become a part of my routine, put me around people who have not become familiar and safe, my abilities decrease. My processing instantly starts shutting down. I don't know what to do. I have not made a routine of what I'm to do next. I start watching people around me to see what I am supposed to do. The room appears in fast motion and I'm operating in slow. My brain goes into shock. Shutdown begins. All application of what I know to do in the familiar is not able to be accessed and executed in the unfamiliar.
If I am with a safe person, I watch them and follow. I watch until new becomes familiar. Anxiety lessens as routine sets in, but it takes time and it takes a HUGE amount of work to get there.
So many people talk about what people with autism cannot do and they often leave out very important tools that have been given to each of us with the disorder. For everything we lack, we have been given the ability and tools to figure out the world. Safe is not a word that we feel, often, outside our familiar. But, what we do have is the natural innate ability to self-regulate and look for safeties to help us through our day.
The obsession for passions and to be in the familiar with the familiar is the safest place for us. It is also the place we can let our anxieties go. Having these moments in our "Autism Bubble," I call it, helps us navigate the rest of the world, better. Our bubble is actually a natural balancing tool that we use to avoid shutdowns and meltdowns. I have to admit, leaving it is hard. Finding a routine, to transition out of that Bubble, is essential, but necessary as well. Moving forward into successful situations outside of the safe zones are absolutely 100% possible for those on the spectrum. Each of us have been given the exact tools we need to make up for where we struggle. We just have to learn how to utilize them as we navigate into success.