How I manage living with autism
It was of great significance in my life when I realised my autism (level 1). I began to join the dots, and connected this family of traits with understanding and coping mechanisms for living with autism.
I think this is because it gave me a format with which to understand what I had for a long time identified as an anomaly in my life. I had previously found other ways to explain, or at the very least, describe my condition.
Trying to understand the predicament
Some were typical explanations – I’m very shy, or I’m introverted. And some were perhaps a little heavier – I have low self esteem, I am inclined to be a depressive, and I struggle with anxiety. But these descriptions of myself couldn’t really stand against interrogation, as I’m actually a very fiesty person, and I feel great joy at the top of a mountain (on my own) or snowboarding in the Scottish hills (on my own). I also feel very centred when I’m writing music or playing the piano.
Describing the predicament
I described my situation with various scenarios. “Oh,” I’d say, “People always like me after a few years – when they get to know I’m actually a nice person. But it does take about 2 years for people to see that.” It was always a mystery what I was missing during those first 2 years.
Or I’d think to myself, “I don’t know why I can’t convince myself to come away from the piano on Saturday nights like everyone else.” I knew I wasn’t making friends, but I also knew I couldn’t face the town.
Strengths and weaknesses
But truly, I’m not that bothered about it now. I am glad to embrace my style of being. It really helps to have found a format that I can relate to. Suddenly, it’s not just me, it’s a surprising, previously unseen percentage of the population. Understanding my ASD gave me a key to finding a whole new realm of self acceptance. It comes with strengths and weaknesses. I’ve been in this realm for a while now, and I’m familiar with my surroundings. I can build on my strengths, and work on my weaknesses. I notice red flags more readily. I understand my needs more, and those of my family. Where possible I try to meet those needs – so we can rock living with autism!
Overwhelm
I become very overwhelmed very quickly, and I either shut down, or don’t shut up. I can do a conversation with a person I know. Or I can do a short conversation with a person I don’t know. Two unknown people in a row, and I’m frazzled, and two at the same time just doesn’t happen.
This could look like, turning away and leaving, or as a student, I’d find a corner of the room, often under curtains if possible, and go to sleep. But with kids, you can’t just leave. So then it’s panic stations, and I’m just jabbering away, saying anything and everything, no one else getting a word in edgeways, often just trying to seem normal, and sometimes talking loudly about my latest epiphany, which isn’t usually small talk conversation. At one point, more recently, as I’ve become more away of this state of my being, I turned to my husband and said, “I don’t know what I’m saying – I’m just talking”.
Knowing our limits – preparation
Now I know my limits. I don’t require myself to do small talk with multiple people for any length of time. Well, that’s idealistic. I have a group situation coming up in a few days, with numerous unknown people. I’m ‘in training’ for that this week – limiting any potential social exhaustion dramatically, and engaging in minimal socialising. This is how I manage living with autism – planning, limiting and investing.
Where’s the respect?
Who can respect a person who doesn’t meet societal norms? ASD is often described by the differences and difficulties of a person with ASD to function in a neurotypical world – it’s described from the neurotypical perspective.
Understanding ASD will differ, depending on if it is described by a neurotypical person, or from the perspective of the person with ASD. I think this was a large part of my struggle to understand why I was so unacceptable to people. What they saw of me was what a neurotypical person will tend to see in a person with ASD. I observed their general indifference towards me – they must have noticed my nervous habits, wringing hands, lack of eye contact, lack of attention. After all they had started their social dance from the moment they walked into the room, collecting ‘in jokes’, noticing and commenting on one another, and establishing social hierarchies. I would have nothing to say, with my speech usually said as a reaction, or trying out phrases and quips that worked in the books I was reading, and were completely out of place in real life. I spent my energy self soothing, establishing routines, and focusing on habits of eating, or at times, not eating. I hoped to join in with others – when they were doing something of (what I thought) interest. But at that point, they had all already established their dance, and their circle. That was when the loneliness and anxiety came in. At the time, I didn’t know that I’d lost the game already 2 minutes into the school year.
But the truth was, I had a structure of inattention and self regulatory survival mechanisms already in place, to cope with the overstimulation and overwhelm of life. This dream-like state was necessary for my making it through the day – after 5 minutes anyway, I can’t hear what is being said anymore, even if I was in the thick of it. I know now what people don’t see. I know now what there is, for them not to respect. I know it now, so I choose not to let it bother me. I know who I am. And with time I have come to know that people who are for me, will eventually come to see me as I am. Self appreciation is a huge part of managing living with autism.
Helping children
Understanding ASD gives me the patience to wait when there is a lull of acceptance amongst peers – to wait for times of inclusion and like-minded people. In these times our children can lean into us, and they can be supported an encouraged to wait for, and seek out ‘their’ people, whether neurotypical or neurodivergent. As long as we allow them say no to negative experiences, they can learn to patiently forge relationships that build up, and brush of the experiences that bring them down.
Foster confidence
However, we can do more than just wait for inclusion. This could be a long wait! Fostering confidence is so much easier when we have the right people around us. Also, when our expectations of ourselves understand that we don’t require from ourselves so much that we’re always in meltdown or shut down. Agreeing to only so much, so that we can not function in a state of overwhelm is a great first step to shedding anxiety, and eventually even to exude confidence!
https://thereisnoshouldbe.com/wild-camping-with-kids/
Foster respect
But more than this, I have found that putting myself in a position where I can organise, or serve, or support very helpfully often builds relationships, and even avoids excessive small talk. Here is the scenario: I go to do a job, I discuss the ups and downs, and ins and outs with my peers. Often these conversations are even on an individual basis, as people often have an agenda with a desired outcome as we discuss future plans. Ideal!
As people with ASD, our experiences are not only the short comings that others notice. We also experience the world as we know it, and can shed new light, almost as an outsider would. We have talents and passions. We can have compassion towards people or situations in different ways, and expressed in different, often set apart ways. We all have our areas of interest and passion where we are capable. These are often the areas to invest in – as a way of building relationships and managing living with autism.
Working on weaknesses
Now we recognise our traits. It all makes so much more sense. We can understand why we’re burnt out for a week following one meeting with a friend. We can build up our routines so that they support our lives. Great. But I can’t ignore the nagging fact that, as someone with ASD, there are definitely areas of weaknesses I can work on. I am aware of some left hemisphere deficits that I can definitely improve on. With the brain as an ever changing, ever developing organ, there is always room for growth and improvement. Apart from learning people skills, and social skills, identifying short comings in left hemisphere behaviour is definitely a way of building from short comings as a person with ASD. For example, practising moving from one activity to another, and managing effort expended before experiencing burn out. This is a left hemisphere heavy trait, where there is room for practise and growth. These are some ways that I manage the condition of living with autism.
https://teachthemdiligently.net/blog/dear-mom-who-is-homeschooling-a-child-with-autism/
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