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Autism: Sometimes I Can’t

I had the best of plans for the day. I even knew in enough advance that I wanted to go that I could (should) have booked the bus, only…

On the Monday, the day I was supposed to phone, we were waiting for a visitor. We. My husband was home. I was glad he was home because I had a visitor coming, and I struggle a lot with such things. He helps. Only when he is home I can almost never do… things. Like housework, or phoning people.

Phones are hard for me. Really hard.

When I have to make a phone call, I need complete silence. I rehearse over and over what I am going to say in my head, and I write it down just to be sure, and I panic before I pick up the phone and dial. I can’t do that when someone else is around, and my husband was home from work that day (having switched days off with a coworker that week.)

So my husband was home, and that was difficult – for making the phone call at least.

And we were waiting for a visitor.

It doesn’t exactly matter who the visitor is, or how long they are going to stay, or what they are coming for – expecting someone to come to my home causes severe anxiety for me. Another thing that is really hard.

Sometimes it is worth it – like when my friend comes over every other week. I like visiting with her, and I know exactly when she is coming, and exactly how long she is staying. Though I still panic before, and crash after, I am always happy that she came.

Other times the visit is necessary, like when I have people coming over to fix my windows, or install new light fixtures, or… then, though they may only be at my home for half an hour, and though I might know approximately when they are coming, I still panic before and during – and though it is a short part of my day, I am exhausted for days after.

Then there are times like these. The visitor was the previous owner of all three of my dogs. When they gave us Misty-Grace, they asked my husband to keep his eyes out at work (the thrift store) for dog blankets, cushions, and such. They run a kennel, and have multiple dogs of their own. So we had collected a large stack of such things for them – and they bought a sleigh for us (one of the wooden baby sleighs for walking on the snow – since my dogs frequently prefer to be carried to walking.)

He was coming to exchange the items and see my girls. It was fine. I was happy he was coming, but anxious and panicky as always. We didn’t know when he was coming. He was driving from out of town, about an hour away. We didn’t know how long he was staying.

So we waited. And as I waited, knowing I was supposed to be making this phone call to book the bus for a trip I already knew I wanted to take, my panic grew.

In that level of anxiety, I can’t function. I couldn’t make the phone call. I couldn’t do anything at all. I was dizzy, and numb, and panicky.

By the time he arrived, it was 4 in the afternoon – and the bus place closes at 4:30. I knew through the day that I should be making the phone call, and I kept looking at the phone and trying to work up the courage, but I just couldn’t do it.

I had to do it. I wanted to do it. I remembered it needed to be done. I knew what I needed to ask for. And still…

Sometimes I just can’t.

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Autism: On Taking the Initiative

“Just get in there and try,” he told us. “It doesn’t matter if you make a mistake (though you are sure to hear about it) so long as you are actively participating.”

But I didn’t know what to do. I didn’t know how to do it. I had never seen it done before – and even if I had, I needed to ensure I understood it completely before I tried to do it in front of a group of people… or even just one if he was prone to yelling or criticizing.

So I held back. Again and again I held back and let everyone else try first. I learn first by observing. It isn’t until, through that observation, I understand it that I will try to do it on my own.

Such was always the case.

The most common comment on my report cards growing up was, “Does not participate.”

fireplace me

Of course I didn’t participate. First of all, I get paralyzed when other people are watching me – so a classroom of kids was not the place for me to try anything. Maybe if they showed me how, then left me to work on it alone, but that isn’t often how things are done.

So I was seen as incapable; maybe I was. I sure came to believe over time that their assessments were correct.

Or maybe I just couldn’t learn the way they were teaching – or maybe I just couldn’t demonstrate that I understood what they were teaching because, well… I get paralyzed when people are watching. That hasn’t improved in time.

So I can’t learn well in groups, and I can’t just ‘jump in and take the initiative.’

There is the word: initiative.

I have been thinking about this quite a bit over the past few years – especially since I was in my Residential Construction course at the local college; for ‘taking the initiative’ was strongly… not even encouraged, but expected.

This is something I am not at all good at. I need to know exactly what my job is, what is expected of me, how I am supposed to do it, where things belong, how things are supposed to be, what the rules are… I have to know.

If initiative is what is expected, I am overcome with anxiety, and can’t move – or think – or act – or…

I have also come to the realization that although I know ‘initiative’ is valued throughout society, it is not something I value in other people. I mean…

While I am thankful if people try to do things that are helpful to me, just… mostly when people do things ‘for me’ it really seems to be based on who they are, not who I am. So it comes out… wrong. All wrong for me. And I get… thrown off… and they get upset because they were trying to help, but it didn’t help. So I think, “why didn’t you just ask?”

Just ask.

I think that a lot of the reason I struggle in ‘taking the initiative’ is because I am sure that what I chose to do, or get, or… whatever, would not be what they had in mind – just as when others jump in without asking me how I would like it, it isn’t what I had in mind; and therefore I then have to find some tactful way to tell them (without offending them) that what I needed was different than what they did; and I struggle to communicate good things, and feel completely incompetent in communicating harder things like this.

 

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Autism: Struggles With Peopling

On Christmas day this year, my husband and I were invited to sing Christmas carols for a church service in the retirement home where his sister-in-law works. This is something that my husband does a couple of Sundays every month (though in different retirement homes) but not really something that I do. I like to sing, but I am not really good at it (I struggle with auditory processing, which seems to be getting worse as I age, and though my hearing is good I don’t ‘hear’ well in groups – which means I can’t hear myself to ensure I have the correct tune.)

Easter 2016

Thankfully my cold, which had already lasted for two weeks, seemed to be over. My throat was raw from coughing so much for so long, but I felt okay. This was good as the sign on the door said anyone having cold or flu symptoms was not allowed in – it made sense.

So I walked in with my husband, feeling very conspicuous, as I always do when walking in front of people. I was carrying my husband’s guitar for him, as he had books and other things to bring in as well. My sister-in-law wished me a Merry Christmas, gave me a hug, and asked how my new dog was doing. Then I followed my husband into the room.

I held his guitar for a while until he directed me to where I could put it down, and then I just stood there, not knowing what to do, as he got organized. After several minutes of standing awkwardly, I said to him, “I don’t know what I am doing,” so he told me I could sit in one of the chairs in front of us. “We’ll be front row people,” he said. So I sat.

My husband’s brother, and two of his adult nieces came in after that. They all wished me a Merry Christmas, and asked about my dogs. (At least they know where my interests lie! I probably wouldn’t have been able to talk about anything else.)

The room was full of seniors. Like babies, seniors don’t cause me the same level of anxiety. After a point in people’s lives, many people seem to lose that… maybe demanding, judgmental, competitive nature (or whatever it is that causes me to fear even people I have never met) and become almost harmless once more. I am still very anxious if I have to interact with them, it is just that being near to them isn’t as hard.

My husband talked a little, and then played his guitar and sang. His brother and nieces stood up at the front and sang as well (his sister-in-law was working, and had to be with the residents.) I stayed in my seat to sing, for that is where I was told to go. I am not sure if he meant that I should stay there the whole time, or if I was supposed to get up to sing with the rest of them – but there I was directed, and there I stayed.

After several songs, my husband’s brother spoke of the birth of Jesus, and how there would be no Easter without Christmas. When he was finished, we sang again. Up to that point, I was doing okay.

And then we were supposed to visit.

My husband and his family went off and ‘mingled.’ They are good at that sort of thing, but it meant I was left alone where I was sitting, trying to force myself to get up as well. A man sitting two seats over from me with his wife came over to me and started talking. He had lots to say, and used questions to get me talking, and still I felt very awkward.

He knew my husband from the thrift store where my husband works, and asked me if I was involved in the community. “A little,” I said, thinking of church and life group. Not much really.

“You must have children at home,” he said.

“Well, I have a son. He is twenty,” I replied.

Twenty!!!” he said in shock. “How is it you have a twenty year old? What is your secret to staying so young?”

My husband is twenty-four years older than me, and his brother and sister-in-law are only a few years younger than him. I understood the question, but didn’t know how to answer without sharing my entire life story.

“I don’t know,” I said awkwardly.

He kept trying to keep the conversation going, but I am horrible with that. Thankfully that is when my husband came back, and started to talk to the man. But, as tends to happen to me, at that moment I started coughing uncontrollably. I just could not stop. That was something that used to happen to me every time I was called to talk in grade school, and even something that happened a lot when I was working front desk at the motel… I feel really anxious and awkward about talking, and start coughing uncontrollably.

As I was coughing, I worried that they would think I had gone in there sick. It might have been aggravated by the raw throat I had as a leftover from my cold, but mostly I think it was just the fact that I had been required to visit. Too much talking mixed with too much anxiety. It doesn’t do well for me.

Since I couldn’t stop coughing, my husband decided it was time for us to leave – and I did; coughing all the way.

 

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