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Category Archives: Autism: Out in Public

Autism: This I Don’t Understand

People look at me funny, but it works for us.

Not everything I do fits in with the ‘norm.’ In fact, a lot of things I do look strange to other people.

Why is it that society says they value individualism, while (at best) giving people strange looks for doing things different?

That is at best. Some people get angry, look at you (me) in disapproval, even react in negative ways over things that have no effect on them personally at all (and don’t cause harm to anyone else.) Why is that?

What does it matter to them if I wear a toque in an arena when most people aren’t that cold?

What does it matter to them if I am working on my garden in April when it is too cold to plant?

What does it matter to them if I put shirts on my dogs?

What does it matter to them if I ‘walk’ my girls in a stroller?

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I wore the toque because I was feeling chilled.

I worked on my garden early because there was much to do before I could plant.

My dogs wear shirts to confuse the eagles that live a few houses down the street and want to eat my dogs.

My girls don’t like walking on the street – they are afraid of other people, and other dogs, and don’t like the feel of the pavement on their feet.

When I walked them without a stroller, we rarely got out of our yard before they refused to walk any more, and needed to be carried. They still got bored being at home all the time. And then as is true now, they got their exercise running around our yard.

So I walk them in a stroller, and we often get 1-2km every walk, twice a day. It is good for us. We get out of the house for a while, without a lot of the pressures of going somewhere.

It works for us.

These things work for us.

And some people think it is cute. But other people get angry.

This I don’t understand.

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Autism: Through My Brother’s Mouth

My younger brother is noticeably disabled – meaning that when people see or talk to him, they can tell. Obviously I am not him, and can’t attest to his experience, but it seems to me that people are much more gracious to disabled people who seem disabled.

Not to say I wish I did, only… perhaps I wouldn’t have been so hard on myself throughout my life for not being able to fit in??? I didn’t know I was disabled, and believed people’s labels and assessments of me (which weren’t kind.)

NT’s seem to not like labels – as if they put people in ‘boxes’ and make it harder to live – but I really appreciate my diagnosis. It isn’t like I didn’t know there was something ‘wrong’ with me before, just… I always thought it was my fault. (So did other people.)

Anyway, my younger brother is noticeably disabled.

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He has been on medication for a severe seizure disorder since he was very young (before Kindergarten.) The medication, along with the fact that he doesn’t like to brush his teeth, means that he has a receding gum line, and not so clean teeth. I, on the other hand, tend to obsess about brushing my teeth – and have a real struggle talking to people if I don’t feel my teeth are very clean.

My brother has a tendency to squint, and when he does, he curls his upper lip in towards his gums. It looks strange. I see that now – but I had the same issue and had to work really hard as a young teen to stop doing that (after having it pointed out to me by a few people – who weren’t being kind when they said it.)

When my brother talks, there is a noticeable catch in his words. He stumbles over them, much like tripping when walking. I don’t think I have a catch in my words most of the time – and no one has ever pointed that out to me, but…

My brother has a limited number of ‘special interests,’ which have been the same for years: bus schedules, wrestling, canasta. Since he is extroverted, he talks about these things a lot! To whoever will listen (and since he doesn’t seem aware at all if someone is irritated by his choice of subject, so long as they stay in listening distance, he will talk.)

Since my brother has a traumatic brain injury from a car accident when he was very young, he never was diagnosed Autistic – though even before that accident he was unable to speak (at 4 years old) and my mom says he was quite a challenge to care for.

I am not my brother.

I obsess about brushing my teeth. I learned not to curl my lip in towards my gums. I have not been told I have a noticeable catch when I speak (and in fact, when I have shared this with others, they have confirmed they have not noticed a catch when I speak.)

I do have special interests, and, being quite introverted it is easiest for me to talk about these interests in order to avoid not being so quiet, but… I do notice when others get annoyed with the subject (in fact, since I don’t appear disabled, they are much more likely to tell me they are annoyed) And when they seem to be ignoring or annoyed with what I am saying…

I feel like I am speaking through my brother’s mouth – complete with receding gums, curled lip, and frequent noticeable catch.

 

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Autism: Train Crossing

Well the day came, and since I didn’t have the bus booked I had to take the van. Well, I guess for that part I would have had to take the van anyway, since we only book the bus to take us home. After all, if my husband is going into town anyway, why would be spent $3.50 in bus tickets to take us to the same place at around the same time?

My husband had offered to take us home after, so I wouldn’t have to return (in the dark) at night to pick him up from work when he was done. I don’t like driving in the dark. I don’t like driving.

This was the day I had set aside to do all of my Christmas shopping… well, most. My son was coming with me, so I would have to pick up things for him on another day. Everything else had to get done. When would I get another chance to do it?

I have really been struggling with Christmas this year. All the commercialism makes me feel sick. I look in the fliers and they seem to be telling us that we should be spending hundreds of dollars on each gift (if we really loved our family!) Hundreds! What ever happened to the $20 maximum for the closest people in our lives? Or better, the orange, Christmas candy, and mittens that used to fill stockings a hundred or so years ago.

When did Christmas become about going into debt?

The more I look in these fliers, the more I hate the idea of buying anything. Such pressure. Such greed. This is not what Christmas is supposed to be.

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But like most other people I do have people to buy for, and I don’t want them thinking I don’t care about them. So I went out looking.

As I left the thrift store where my husband works, a train started going by on the tracks we had to cross to get to town. I was first at the stop sign on my side – needing to turn right to cross the tracks. Across from me was the Handy Dart – the bus I had planned to book to get us home. It was being driven by a person my son and I both know. She was first to the stop sign across from me, and had arrived there before I had.

On the road perpendicular to us – the one that crossed the train tracks – there was no stop sign, and there were several people stopped at the train crossing there.

I was sitting there, in the driver’s seat of my van, panicking for two reasons:

  1. Knowing who I was, the driver of the Handy Dart would recognize me sitting in the driver’s seat of my van, and question how I qualified to take the Handy Dart (to be fair, in my application for this bus I did say that I could drive, but that it causes me a lot of anxiety, and I still was approved.)
  2. I struggle with the rules for a two way stop where there is no stop sign in the other direction. She was there first, so I wanted to let her go first – but she was turning left where I was turning right, and in such situations in the past the people turning right went first regardless of who got there first…

Perhaps I shouldn’t care what other people think of me, but I do. I care a LOT! So it bothers me when I think that other people might think that I don’t belong somewhere, or shouldn’t qualify for something, or…

My son said that if anyone had been in the van with us, they would never question that I should qualify for the Handy Dart (he has also said that in the past while we were standing outside the thrift store waiting for the bus, and I was so anxious I couldn’t think – to be fair, the bus never showed on that trip, so the panic was justified – I ended up having a full meltdown then.)

Anyway, I hesitated for a second, and when she didn’t go, I did. But the panic never let up.

I wanted, and had planned to get all of my Christmas shopping done that morning, but after the experience I had waiting for the train at that stop sign, all I wanted to do was be home with my girls. We did go to every mall in town (we live in a small town, so when I say mall, there are only a few stores in each) but I didn’t get any shopping done.

I couldn’t.

And the rest of the day I was anxious, teary, and emotional. Sometimes I think I shouldn’t be driving at all. It is all just too much for me.

 

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Autism: Too Much Effort

I meant to go swimming almost weekly this year. I wanted to do the same last year. My therapist (who is no longer working with me – something about being short term only…) said she could get a free weekly pass to the community centre both last year (but I had no transportation) and this year (but she hasn’t talked to me since she offered.)

I wanted the free pass, but I didn’t get it. I could go for the Toonie swim, and did for three weeks straight in September/October, but I would be more likely to go with the pass.

Swimming is a good activity for me.

Though I am allergic to the chlorine and get rashes, and though I prefer to swim alone (I wouldn’t say the pool was crowded when I went, but there were people I had to swim around, and children who jumped in and splashed into my ears causing earaches) being in the water is calming enough that I am able to get through those things.

When I go swimming I:

  • get out of the house
  • do exercise
  • quickly become calm
  • feel good after
  • am happy
  • often sleep well after

All things my therapist told me I should be doing when she was talking with me.

But there are a lot of barriers to this activity for me.

First of all, I have to contact the Handy Dart bus service three days in advance to book my ride. I don’t know three days in advance if I am going to be functioning well enough to leave the home, so that makes this type of transportation pretty unpractical for me. I understand why they need that notice, but… it would be better if I lived on the bus route so I could take the ‘normal’ bus, or if I lived close enough to walk (as I did when I first moved to this town 17 years ago.)

It also means that I have to leave home. Even when I have access to a vehicle that I could use whenever I want, I struggle so much to leave the house most days that it really isn’t worth the insurance or maintenance costs. It worked when my Mom was here, but not when I am alone (my son likes to leave the house much less than I do.)

Then I have to get changed into my swim suit and get in the water – the thought of which makes me cringe until I actually get in the water.

Afterwards it is awkward to change because I am wet, and I have to take a longish shower to get the chlorine off so I am not itchy for the next few days. Even so I can still smell chlorine (I guess it gets in my nose) for a day or two after.

And then I have to get home again – also which needs to be booked.

Then, too, I didn’t mention that although swimming calms me, the thought of all these steps brings me to panic up until the moment I get in the water.

So I would love to go swimming, but it seems there is just too much standing in the way of me actually following through with the activity – much like many other things in my life. It just takes too much to get there.

cold water

 

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Autism: Give Me An Out

I woke up with such a bad headache (this has been happening a lot lately) that I didn’t think I should go to church, but it dulled as the morning went on – and really, I would rather go than not, even when I don’t feel like it.

When we get to church, we often say “hello” to a few people, get our sermon notes, and go to our seats. While my husband might stop to visit, that part of the church at that time very quickly puts me in sensory overload.

  • The fan running above me.
  • The doors opening and closing.
  • People all around me.
  • Open spaces.
  • Lots of voices.
  • Children running around.
  • Sights, smells, sounds… it is all just too much.

And when I have to stand in there – which is true of any such space (I hate being in warehouse stores for these reasons even more) – I quickly start going into meltdown mode.

Mostly my husband recognizes this and gives me an ‘out.’ He might stay, but I am able to comfortably excuse myself and go.

Perhaps on this occasion it slipped his mind how hard this was for me. Maybe he thought he would only talk for a moment, and it would be okay. Possibly it was because on this Sunday there were fewer people in the foyer when we got there.

Easter 2015

Whatever his reason, I found myself ‘trapped’ there in that foyer with no polite way I could find to excuse myself. We stopped to say “hello” to one couple, and he ended up staying to tell a long story about how his jaw was broken. To include me, I suppose, they kept looking at me while he told the story, and I couldn’t get away.

It wasn’t about his story, or about the couple we were talking to (or he was, anyway.) In that type of situation I am being bombarded by all sorts of sensory stimuli, and I can’t block it out. It was all I could do to try and hide how irritated I was getting.

Finally the story was over, and we started to walk away. I thought I might be okay, though I was still struggling. We only took a few steps, however, before he stopped to talk to someone we didn’t know.

She had just moved to town a few months ago, and was new to the church. My husband was trying to make her feel welcome. I know we are supposed to do that, and I saw the value in it as he was speaking, but… I was already doing pretty bad, and wasn’t able to handle any more.

I know that I didn’t do as good a job of hiding my irritation – and again, it wasn’t about what my husband was saying, or about the person he was talking to. I was feeling trapped and overwhelmed, and could find no polite way to escape.

So the irritation, I am sure, showed loud and clear. I was crossing my arms and hugging myself as I do when I feel that way. I was looking away, trying to block things out, shifting from one foot to another… I am sure it didn’t help her to feel welcome, but it certainly wasn’t my intention to come across that way.

Really, it was all I could do not to go into full meltdown, crying and running away, right then and there. Of course, she wouldn’t have known that. She wouldn’t have ‘known me from Adam,’ as they say (or should it be Eve???) and certainly wasn’t aware that I am Autistic. It isn’t like I have a neon sign on my forehead announcing that.

So instead of seeing that I was in sensory overload, and needed to get out of there, I am pretty sure that in her eyes, I just seemed rude.

Finally that conversation was over, and we went in to our seats – but I was crashing hard! My husband tried to talk to me about other things. He tried to hand me my sermon notes to read over. He tried. But I couldn’t. I was done. Like I said, it was all I could do not to cry and run away, and I was having such a hard time… I guess ‘regulating’ myself might be the right term.

Then the worship music came began, and the calm washed over me, and I was okay.

But I wish they understood how hard such things are for me and would always give me that ‘out’ I so need in these situations.

 

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Autism: Uncontrollable Laughter

We were sitting at a friend’s house for Life Group (Bible study) and were going around talking about how our week had been. Typically I really struggle with this – partly because I don’t speak well in groups to begin with, but also because I have been taught not to think of what I am going to say while listening to someone else talk.

That is a really hard rule for me. It isn’t because I am a bad listener. If I knew I wouldn’t have to say anything for a while after, or if silence were acceptable between speakers to give me time to think, I would be able to listen quite well, but… as long as I know my turn is coming and I will be expected to speak, too, I go into panic and my mind shuts down.

When it comes time for me to talk, my mind is blank, and I pretty much can’t remember anything that happened in the week, or think of anything to say.

“How was your week?” someone asks me.

“I don’t remember,” I respond – and they all laugh. But in that moment, that is the truth. It isn’t that I am generally unable to remember what happened in a week, but in that situation, I really can’t think at all.

That night, however, was a good night for me. I was functioning pretty well, and answered several questions. I talked a LOT about my dogs. We had just been given “Grace” six days before, so I had lots to say.

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We were talking about the importance of community, and how that is hard for some of us. My husband had mentioned that when he is home, he is tired, and just wants to read or go on the computer. I said that if I wasn’t pushed to go out and visit (Life Group, Church, etc.) that I would spend just about all of my time with my dogs – because I like dogs more than people.

They all laughed at me. I went on to say that I know I am not supposed to say things like that, but it is true. Dogs are easier than people. Thankfully they know me. They have known me for a long time. While still laughing, they told me that they have known this about me for a long time, and it is okay (they love me anyway.) It is nice to be accepted.

The thing that really defined the evening for me though was when my husband was talking about one of his brothers who had been in the hospital for a while. He couldn’t think of the word, and came up with that his brother had been ‘ejected’ from the hospital.

Well… that was it for me for the rest of the night!

I am a very visual person, and suddenly I have this visual in my mind of people being flung off the top of the hospital. Cannons, sling-shots, catapults… it didn’t matter how it was done, all these poor people were now flying through the air as I tried vainly to get parachutes on them all before they started coming down.

It has been a long time since I laughed so hard in public – not just because my sense of humour is different from other people’s, but also because I feel very self conscious about laughing like that in public. I worry about how ridiculous I look – and I did in that moment, too, but I just couldn’t stop.

Everyone else went on to talk about other (serious) things, and there I was with tears running down my face because I was laughing so hard. All those poor, poor people flying through the air. Thankfully I never saw any of them come back down.

“And that is how we keep healthcare in Canada free,” I said.

 

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Autism: Unexpected

I wish I had brought my camera, just… it was so unexpected! The whole thing, really. I am not even sure having my camera would have worked, however, as I didn’t even think of it until long after. Plus… they wouldn’t have liked it.

First off, my son doesn’t like the cold. Unlike me, he likes dark and rainy days, where he doesn’t have to go outside. If he didn’t have to shovel, I think he might even like the winter. But his circulation is bad, and he gets cold fast. So he doesn’t like the snow.

When the weather called for snow last week, therefore, he announced that we wouldn’t be going for our walks again until spring. That made me sad as it seems we just started again after the heat of the summer (which is even harder on him than the cold.)

It was then surprising when he asked me if I wanted to go for a walk this morning (of course I did!) We got all bundled up, and out we went. The thermometer said it was -7 Celsius when we left the house.

The nature trail is about a 5 minute walk down the street from me, if that. We cross the train tracks and go through a gate, and the trail leads along the lake-shore into town. It is such a nice walk that we hardly ever choose to go in another direction.

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As we were walking and talking on the path through the snow, I was reminded of similar walks with my older brother when we were young.

“Was it next to the train tracks?” my son asked.

“No.”

“Was it by the water?” he questioned.

“No.”

“But it is the trees, and the snow, and the leaves,” I said. “Like the forest beside my grandparent’s house that we later bought. It feels the same,” I explained.

As we walked I suddenly saw a deer on the lake side of the trail, hopping.

“Did you see it hopping,” I asked my son, hopping up and down.

“Shhh!” he said, “You’ll scare it.”

“Right.” I usually remember that, but I was so excited. We have seen deer around often, but never on the trail. We quietly kept walking, and very quickly saw another deer up on the tracks on the other side.

It stopped and looked at us, and we stopped and looked at the deer. I silently prayed that it would know we weren’t going to hurt it as we continued on our way. It watched us pass, and whenever I looked back, it was still there. The other deer had run ahead, and was up on the tracks in front of us. I prayed that a train wouldn’t come before they had a chance to carry on (and the next two trains to come were running very slow, so all was well.)

Further up my Pastor met us, running in the other direction. He said ‘hello’ to me, or… I think he asked how I was doing or something. I responded, and realized he likely didn’t recognize my son – the last time my son was in church he looked very different. Afraid my Pastor would think I was with some strange man I quickly said, “It’s (my son.)” So that was okay.

As usual, we walked to the bridge (about 1/4 way along the trail) and then went back, passing my Pastor again along the way. That was a great walk!

My son was cold and tired as we headed back home. He once again told me he wouldn’t be walking again through the winter.

“But if we hadn’t gone, we wouldn’t have seen the deer,” I told him.

“But now we have seen the deer, so we don’t have to go back,” he replied.

Oh well, it was a good walk anyway.

 

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