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Autism: Candy Crush

I spent the entire morning, or just about, playing Candy Crush Saga on Facebook. They gave me unlimited lives for two hours, and at that moment it became absolutely essential that I distance myself from the person just behind me (who caught up while I was away at the lake both times.)

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I kept going and caught up with the only person on the board ahead of me. She passed me several months, or more likely, over a year ago.

When I passed her, I wanted to distance myself from her as well.

It becomes a compulsion. I just have to do it, and much as my mind is screaming to stop, I keep going. I am not competitive. Not at all. The thing is, though, that I don’t like seeing other people on the board with me. I don’t know how I managed in the beginning when the board was filled with people around me, but at some point I found my icon alone on the board, and felt like I could breathe again.

It irritates me to see other people there. I don’t know if it is the clutter of the board, or… More likely when people – or even icons – are around me, I feel watched. I can’t function well when I feel watched, and it always leaves me feeling anxious and irritated. It is like having someone in the kitchen when I am in there; I just can’t.

Only I am not competitive. It didn’t bother me after she had passed me far enough that her icon wasn’t on the board with me. It was only when it was there that I had to get past.

So I spent the morning playing Candy Crush on Facebook. It is such a waste of time, and most of the time, I don’t even enjoy playing. I keep telling myself that I will stop playing – someday. But there again is one of my fixations that I can’t seem to overcome.

I am on something like board 1900 (higher, really, but I don’t want to open it right now to check, or I likely won’t complete this post.) So I think, knowing me, is the only way I will give up the game is if either I complete it or it stops working on my computer.

 
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Posted by on October 13, 2017 in Experiences of an Autistic

 

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Autism: Detailed Uninteresting Conversations

One afternoon as I was working outside in my garden (both an enjoyable experience, and an uncomfortable one, since my garden is in the front of my house, near the street) some neighbours were walking by. They had their dog with them – a small Chihuahua – and my girls were racing her along the fence line; they love to do that!

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Though I have discouraged it before (my girls become defensive, and might nip) they brought their dog up to the fence, to see if they might be okay to visit this time. They were not! I really wish people would stop coming right up to the fence. Sure my girls are cute, and it is fun to watch them running the length of the yard (likely to ensure no one comes in,) but they are not good visitors – and it seems they likely will not get over this, though I really try to discourage the behaviour.

Well, they did move their dog away (I wish my girls would visit with her – Gryff, my Pomeranian, loved to visit with her) and the husband asked me if we were having trouble with our vehicles.

At the time, we had two vehicles in our driveway – our 18 year old van, and an uninsured vehicle belonging to my SIL. Both had their hoods up, as my husband was charging the batteries.

“Is (your husband) having trouble with his vehicles,” the man asked. I tried to explain – “the car has been sitting idle all winter, and the van… well, the lights flash as if they are possessed.”

But my explanation wasn’t enough for him, and he kept trying to pull details out of me:

  • do they flash all the time?
  • Which lights flash?
  • If the headlights are turned off, do they still flash?
  • If the lights in the cab are switched off, do they still flash?

On and on he went, and as he spoke – though I realize in his own way he was trying to help – I became increasingly agitated.

A lot of that had to do with him trying to pull from me, and to share so many details verbally. I have a lot of trouble following conversations to begin with. Though I try to listen, my brain can’t seem to hold on to so much detail, and it becomes exhausting when I am forced to try. I am very much a visual person, and much more capable of following what is being ‘said’ if the words are written down. (Pictures are even better.)

Above that, this was not something I was interested in. The lights flashing? That has been an issue for at least 6 years. We have taken it to the mechanic, and I even asked my auto teacher when I was in the trades program at college. No one has given us an answer – and really, since it is my husband who looks after the vehicles, I have no desire to start worrying about that. (I have enough anxiety.)

Part of it was that he was trying to show his knowledge. People seem to do that. But again, I don’t care! It is a vehicle, and I have absolutely no interest in vehicles (unless they are undetectable, self-driving, flying cars that run off solar power, air, or water.) I won’t remember a thing he said (mainly because it was spoken, and not something I saw) and it felt like he was trying to make me feel stupid as he asked so many detailed questions about – again – something I don’t care about enough to pay much attention.

It flashes. That is enough.

So once more, an enjoyable afternoon spent in my garden turned difficult because… people! I wish we had bought a house with the large, sunny yard in the back.

 

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Autism: Winter Blues

January and February seem to be the hardest months of the year for me. This has been true for as long as I can remember. I don’t know if this has to do with the darkness of the months (though in that case, December should be bad as well) or the cold that keeps me inside, or the dryness of the air that irritates my skin, or… likely, as in most things, it is a whole combination of factors. Whatever the reason, these months are ones where all I can do is try to endure.

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The winter I was seventeen, the irritation and fear got so bad that I ended up leaving home and staying in a women’s shelter. I was (for good reason) afraid of my younger brother, whose medication made him extremely aggressive at that time – but I live with my mom, and had my own space, and things only got worse once I left home. It is something I have regretted for years since, and something I would change if I had the chance to do it again – yet I remember the intensity I was feeling at the time, and there seemed to be no other option. Winter does that to me.

The winter I was fifteen, it was the same time of year when I told my boyfriend what my father had been doing to me. It was a secret I had held onto for years – and while people say it is better to speak of such things, I don’t believe it has helped me to share it. I think it likely made things a lot harder for myself and those closest to me. Do I regret sharing it? I don’t know. What I do know is that:

  • it broke my relationship with my older brother (who was my best friend up until that point,)
  • the people who knew trusted me less after it was said,
  • my extended family on my father’s side, who I was very close to before this, felt distant after (my father was so well liked, they thought I must have been mistaken (I wasn’t,)
  • my mother (who divorced my father after that) has lived in poverty since…
  • I had a really hard time explaining to people who didn’t know where my father was during the time he was in jail
  • when we went to court, I couldn’t speak, so nothing happened except for me being stressed out
  • nothing improved for me in sharing this; instead everything got harder
  • my father died less than 9 years later – if I could have just held on, it wouldn’t have cost my family so much

The past two winters I have been so sick during these months that I could hardly move – in 2015, I put my back out shovelling just after New Year’s when we had 1.5 feet of snow fall in one day. It was the first time I ever called into work sick, and I was off for a week. Even when I went back, it was months before I could get back to doing housekeeping, and even then I was really slow. Though all the x-rays showed was a little bit of arthritis, I still struggle with back pain that doesn’t seem to improve with use, exercise, or even rest.

Then in 2016, I was weaning off of my anti-depressant medications, which caused such severe dizziness and nausea that I couldn’t get off the couch (for even sitting up left me really sick) for all of January and February.

This year, things haven’t gotten so bad – yet. But the exhaustion and irritation are very much a part of my every day experiences, and motivation is very much not! All I can do is try to hold on and get through it (I suppose if we had money, this would be the time of the year we should travel to someplace warm and sunny) and hope that nothing big is lost during this time.

 

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Autism: Not Sharing

I have been praying over this as much as I have been trying hard not to say anything. There are just some moments in my life, I have found, where it is best to hold it in: when I am so irritated that I am prone to meltdowns and tears over something even I would admit wasn’t that big of a deal is one of them. There are also those times when the whole world makes me sad.

It isn’t that these things don’t bother me at other times, but there are just some moments when to open up would mean to explode… or at least to put an unreasonable amount of attention on something that only required a quiet word.

At the same time, as I hold these things in I am reminded about how often when I do share – and I admit, speaking is hard for me, and I probably don’t phrase things in the best possible way – people (my husband mostly, but others seem to be much more destructive with their response) dismiss me as if I am overreacting. Sometimes I am. Most of the time, if I share it, it is a really big deal to me. After all, sharing itself isn’t natural to me, and spoken words are always awkward.

I certainly don’t believe that I am always right. In fact, I am exceptionally hard on myself – much harder on myself than on other people. I know I get it wrong a lot of the time… but that doesn’t mean I am always wrong. So that builds up irritation, too – for the people I struggle with the most seem to be so sure that they are always right, and I am always overreacting – and that isn’t fair!

Anyway, irritation. Tears. Meltdowns. Anger. I have been battling this so strongly for the past few weeks – I guess I am being worn down with the sickness and exhaustion, but I don’t think that is all of it. So I battle it on my own, and I fight it out in my head (while washing the dishes with tears streaming down my face… and I don’t mind doing the dishes; really!) and I pray that God will help me through it.

But I haven’t shared it… okay, I did share how upset I was when my husband made sausages in the morning, or when he ignored me on holidays – but though some of those things seem like I am overreacting, I assure you, the pain is very strong and very real for me. Not universally accepted as a big deal, but huge (like slapping me in the face huge) to me. These other things that are setting me off, though, I haven’t shared at all.

A quiet word, a small request… perhaps they could be changed if I could communicate the need – but right now, when the little things seem so big, is the worst possible time to try.

So I hold it in, and I fall apart, and I try hard not to show it on the outside. I am not great at concealing. It feels dishonest, like a lie, yet I know if I don’t my entire life could unravel… I mean, when a dirty footprint makes me want to run away and not come home, there is no way I could rationally share my need for it not to be there.

And then, after weeks of this, I went to prayer yesterday – “Please, Lord, help me battle this irritation, and make me a good wife to my husband.” Same as always… the words may change, but the request is the same, and each night the silence before I can get these words out seems to get longer. That is probably a good thing. Following prayer, I wrote in my journal – as I do every night.

But then the words came out: “I feel judged and pressured, like I felt before my kids were moved,” I wrote – and the anger and the irritation overwhelmed me so I could hardly breathe.

“Ah,” I thought. “That is what this is…” I am afraid. I am afraid that when my husband retires next year (which I want for him as much as his family does) I will find that I have to make up the difference – if my disability payment, and the rent my son pays to me means that my husband doesn’t qualify for the low income supplement, then I feel they expect/pressure me to make up the difference for all three. And I can’t. At the best of times I could never make up that, and now… there is a good reason that I qualified for long term disability when nearly half of people who apply get turned down straight away.

I am afraid of the future. Afraid of being the reason my husband can’t retire. Afraid of being pushed into something that will bring me to failure once more (even the thought overwhelms me so much I can’t function.) Afraid of what will happen if I lose my husband (he is quite a bit older than I am,) and am left to do this alone. Terrified.

And I am glad I didn’t talk to him of these little things that are bringing out such strong irritation – for he is not the issue at all. Fear is.

Easter 2016

 

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Autism: A Week of Wheat

For about two months I was completely off of gluten, though I continued to eat oats as they didn’t seem to have the same effect on me. The plan was to try wheat again before my summer camping trips so that I would know for sure if this was an issue for me.

But then my dog died, and I knew that time wouldn’t make for an accurate test, for the pain was deep, and my functioning was low. Then we got a new dog, and that time, too, wouldn’t reveal the true effects of wheat on my system. I was very anxious, still in a lot of pain, and still not functioning well.

Knowing it was likely a strong issue for me, I tried for weeks to plan gluten free foods I could eat while on my camping trip – but as I said, my functioning was low. I am not even sure I could have done it when I was well. Food has always been a struggle for me to begin with. There are always multiple things standing in my way:

  1. I cannot prepare meals, and struggle to eat at the best of times, when with other people.
  2. Where we go, there is no running water (we bring water) no electricity for cooking (only solar panels for charging devices), just a couple of propane fridges to store everyone’s food (a few years ago, we didn’t even have that. I am thankful), and a barbecue where meals are prepared (often communal, and since I usually can’t eat what others are eating, I have to make my own, which I can’t do with people around, or on propane stoves.)
  3. I am not only gluten free, but am also very allergic to eggs (a staple camping food, which always scares me), intolerant to dairy, allergic to Kraft dinner (another staple, and even the smell leaves me very nauseous) and don’t eat meat, pasta, or mushrooms. Plus, processed foods very often leave me sick immediately after eating them.
  4. When I am hungry, I am strongly prone to meltdown, and can no longer think. The hungrier I am, the less I can tolerate food, and the lower my functioning is. So to leave me to get through that on my own is a bad, bad, idea – yet that seems to be the natural solution for people. “She’ll eat when she is hungry,” they say. No! I need productive help to get through it, and if I am already hungry, I can say that will be hard. Best not to go there in the first place. And no, I cannot help it or avoid it despite my very best attempts at planning.
  5. I make much of my gluten free/vegan foods from scratch at home, when I am alone. But they don’t store well, defrosting (or even expecting to find freezer space) would be very challenging, and it is likely (being communal meals) that I wouldn’t have the space to cook even if I could cook with other people around (which I can’t.)

Eventually I came to the conclusion that I would have to eat both meat and wheat during my nine days away. Even then I have had issues. Here are the results:

  • day 1 – really bad heartburn, with some extra trouble getting to sleep
  • day 2 – increased fears and controlling tendencies towards what other people were doing with food
  • day 3 – complete meltdown, unable to think/function/eat when others chose beans and wieners for lunch; cried for over an hour, massive headaches all day, bad heartburn, trouble sleeping
  • day 4 – continued controlling tendencies, inability to think clearly, anxiety around food, struggles with emotional stability, fuzzy thinking, full meltdown in bed when everything (hair, clothes, skin, blankets…) severely irritated me – my husband left to sleep in a camper, and I had to drug myself to sleep.

All of these things continued and grew worse as I ate more and more gluten (since it was present at nearly every meal, and often the other foods were even worse for me.)

This is not likely something ‘they’ could test for. I don’t believe I have Celiac disease, and if I didn’t have the language to express this, other people would likely not make the connections. Yet it is a very, very real issue for me.

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Autism: Effects of Gluten

I had hoped it wasn’t so, but I should have seen it long ago. I saw the connection in my children – with very much the same effects as I now accept are true for me. That was about 9 years ago.

Two years prior to that even, I considered that I possibly had a sensitivity to either wheat or dairy, as I felt sick all the time. I eliminated the dairy, found especially with future attempts to eat/drink it that I was indeed intolerant, and left it at that.

Even when I took my children off of wheat and dairy, seeing a strong correlation between those foods and struggles with their sleep and behaviour, I never considered going off of wheat myself. I was already allergic to eggs and Kraft dinner, and intolerant to dairy, plus very picky according to other people’s standards. I didn’t even entertain the thought at that point that wheat could be an issue for me as well.

Until a couple of years ago, that is. I then noticed that the more wheat I ate, the more prone to digestive issues, bloating, and heartburn I was. At the same time, I was reading a lot of information about the gluten free/casein free diet for people with Autism (which I strongly suspected by then, and was later diagnosed with.)

So I knew that I would need to test this at some point, but I also struggled with that against the thought that I have such trouble with food to begin with. Did I really want to make things harder? It is difficult to find a balance between removing things from my life that cause me struggles, and having further struggles caused by that very removal.

I really didn’t want to do this (more, I didn’t want it to be true), but as the noted side effects became stronger, I knew that I had to try. So I went gluten free for a short time – eating mostly corn, oats (which didn’t seem to bother me, or my children) and rice. Suddenly, for the first time in many, many years, I was able to get to sleep without drugs. When I allowed myself even a little wheat, the effects were undeniable:

  • insomnia
  • irritated skin and scalp
  • heartburn
  • bloating
  • heightened anxiety
  • quicker to meltdown
  • struggle regulating emotions
  • stronger sensory issues (and I am already extreme)
  • increased irritation

The thing is, these are the exact effects I saw in my kids (minus the heartburn and bloating, which they wouldn’t have been able to share with me even if they had experienced these) and which, like my dairy intolerance, the doctors were not able to test for or confirm – but were no less true for all of that.

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I am now certain that these foods are not ones I can safely include in my diet. But then we were going camping, and I tried to plan around this, but failed. Trying not to be difficult, I agreed to eat wheat during those 9 days away and Wow!… but that will have to be a post for another day.

 

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