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Autism: Communication Blocks

One day, a “Quora” member asked:  Why don’t nonverbal autistics speak? I’m trying to understand why my autistic son says very few words, mostly parroted), and am curious how it works. Is he just incapable, or does he not like it, or is he worried he will get teased for being slow?

Hoping that my experience might help this parent to understand, I answered:

All I can say is from my own experience. I was verbal as a child, but had selective mutism (as if I had a choice.) A lot of the time I couldn’t talk. Those around me thought I was “just shy,” or later would get upset at me for being rude (in my teen years.) Neither were true.

The truth was I had the thoughts – whether in words or more often pictures – but frequently couldn’t make the connection between those thoughts and the spoken words.

It was as if there was one road that would take me from my thoughts to the spoken word, and very frequently that road was inaccessible. Despite the fact that I could speak at some times (yelling at my brothers for instance) there were other times (much more frequent) when I absolutely could not speak.

In fact, the more I wanted to speak, the less likely it seemed the words would come.

So if I were in school, I usually couldn’t speak. Even saying “hello” to people I really liked (my grandparents, for instance) was impossible most of the time.

As an adult, I really worked at rewiring those pathways so that now (at 41) I mostly can talk when I want to. I still struggle when I am really anxious, depressed, or uncomfortable, though (even in a place, and with people, that I can talk to on good days.)

When I was diagnosed, I was told I have an expressive language disability – but I write often and frequently. If people had allowed it when I was a child, and especially a teen, I would have written to them – maybe then they would have understood.

fireplace me

 

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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: A Better Mistake

It had been several years since I had been to the eye doctor. Even then, the last time I went I got contacts, and wasn’t given my new prescription for glasses. I was due for a new prescription, yet I am on a disability pension (federal, not provincial, which doesn’t have any benefits, and pays much less at that) and have no coverage, so couldn’t bring myself to go.

The last time I went, it was $150 just to see the eye doctor, and that didn’t include the cost of glasses. I can’t afford that.

So I have been putting it off, and putting it off, and meanwhile I have been getting more and more disoriented as I go out. My prescription wasn’t working for me anymore, and I had to do something.

That is when my friend told me about the vision clinic in the mall – there I could either buy glasses from them, and get the prescription free, or buy the prescription from them for $45, and get my glasses somewhere else.

I fully intended, when I went in to that appointment, on either buying the glasses there (ready in a hour – very convenient) or buying the prescription, and getting my glasses at the online store I have been using for years. Fully intended as in those were the only two options I had in my head going in – and I don’t change my thoughts quickly, especially when I am in a situation (such as going to an appointment and talking to some strange person) that causes me anxiety.

It happened just before Christmas, and my husband drove me down to the appointment. At least I didn’t have to deal with that!

She took me in right away, and said she had forgotten the appointment, and had put on some Eucalyptus essential oils or something – and asked if it bothered me. Not at all. I have sensory issues, but I actually like most scented products like that. If she smelled like smoke… or even unscented products (those are some of the worst for me) it would have been a problem, but not the eucalyptus.

Then she started with the vision test.

I might have been in there 5 minutes total, but…

The way vision tests are done is very hard for me. I can’t remember in between the lenses which one is better, and anyway, they pretty much all looked blurry.

I tried. I tried really hard. I even told her I was struggling, and that they all seemed blurry.

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We got to the end of the test, and she showed me the old and new prescriptions. They were both blurry, and I told her that – so she got frustrated and said it was the best she could do, and I should go to a proper eye doctor if I wanted something better. I couldn’t explain my struggle.

She had the prescription on the screen – both the old and the new. I was looking at it as I wondered how to solve the issue – could she try again? I couldn’t afford to go to a proper eye doctor. I stared at the screen as I tried to process this complication – but she sent me out without any options.

When I got home, I decided to order glasses with the new prescription anyway. I felt bad for not paying for that prescription, but she had said that I only had to pay for it if she printed it out for me – she didn’t even give me that option.

My old prescription was still in the system online, and my astigmatism hadn’t changes (she said that while I was in the appointment.) So I put in the new numbers, and ordered the glasses.

Meanwhile all the numbers I had seen were running through my head, and I realized I made a mistake – I put in both numbers for my left eye (old and new) and not the correct one for my right eye. I emailed them right away, and tried to have it corrected – but it was Christmas, and no one got that email.

Just before New Years I got the email saying my new glasses had been shipped – ‘great,’ I wrote back, ‘only I emailed saying I had the wrong prescription and asked to have that changed.’ They got that email, and said it wasn’t a problem, they would make my glasses in the proper prescription and I could send the ‘wrong’ ones back.

And then they came in…

I was just going to send them back unopened, but I wanted to see how bad they felt to wear – this prescription was -0.50 stronger than I was supposed to have for my right eye. I put them on and…

It was the best I have been able to see in years!!!

They were perfect. Comfortable. Didn’t make me dizzy at all. In fact, it was the first time since I started wearing glasses that I didn’t want to take them off. So wonderful!

I wrote again to say I wanted to keep this mistake. It was too late to cancel the proper ones, but they did give me a large discount. Since it was my mistake (and a very happy one at that) my husband and I agreed that I should pay for them.

The ‘proper’ prescription is good for using at my computer, which is pretty close to me. For everything else, I use the mistake glasses.

A better mistake I have never made.

 

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Autism: Excruciatingly Frustrating

There is this electric piano that I have in my living room It belongs to my niece, who has been… travelling the world for a couple of years. She asked us to store some things for her, and this was one of those things.

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When she brought it, she thought that I would like to use it. At the time (having had little warning these items were being brought to my home for storage) I didn’t know where to put it. I have a keyboard of my own, and so told her we would just store it for now.

Only we haven’t any good storage in this house, and it just ended up on the floor in our basement hallway. Fearing it would be damaged by flooding (the washer has been overflowing at times, and the one side of our home has been leaking, since when the new roof was put on several years ago, they removed all the gutters and downspouts so the water now comes into our home on one side) I moved things around and found space for it in our living room.

I would have used it then, only I didn’t know where she had put the cords and attachments, and didn’t want to go through her things looking for them. I asked my husband to – this was maybe a year ago – but he never did.

I also asked him to NOT use the piano for storing his things as he came in the door – but of course he does. Of course he does. He doesn’t understand me. He doesn’t understand my need for him NOT to do those things.

Anyway…

Another niece who lives in town asked, since we aren’t using it (I would, only my husband never did find out where the cords and attachments were, so I couldn’t) if she could take the piano to use. I don’t mind her taking it. It would give a place where I could bring my keyboard out and actually be able to use it (so long as my husband doesn’t store things on it, which causes me a lot of distress) but I still don’t know where the attachments are. She would need them to use it, too.

I tried.

I tried so hard to explain to him that in order to use it, she would need to ask our other niece (her cousin) where the attachments were, but…

He never seems to understand me.

He never does.

The longer we have been together, the less he seems to hear. It makes me want to cry. It does make me cry.

“(Her husband) is a really smart guy,” my husband told me. “He can figure it out.”

Okay, so I am stupid for not being able to do this?

It isn’t about being smart, or about being able to understand construction, or electrical systems, or… “She needs to ask where the parts are,” I said… but he didn’t get it. “C can figure it out,” he said again.

Excruciatingly frustrating!!!

It isn’t about being smart. I am smart enough to know that what they need is to ask where the parts are – not to figure out a way to not need those parts.

Sometimes he makes me feel like he thinks I am so stupid – when he is the one not understanding what it is I am saying. This is how people have responded to me all of my life – and I try so hard to explain. And it seems to me I couldn’t be more clear. And they think I am being clear – but then they twist my words, or interpret them to mean something they never did – and they are so sure they are right they don’t give me a chance. They just keep trying to correct my correction to fit in with what they believe I am saying…

But I am not! What I am saying is what I am saying. There is no need for interpretation. There is no need to ‘look between the lines.’ It is all right there, clear as day. I don’t know why they can’t understand.

I don’t know why they respond to me as if they think I am stupid. I am not stupid. I know what I am saying – they are the ones who misinterpret.

They have always made me feel like they think I am stupid, and it hurts more than I can express – but he is my husband! He shouldn’t be making me feel that way.

And when they make me feel that way? I become so upset I shut down – which only goes to confirm for them what they believed about me in the first place.

So, so frustrating. So painful. So wrong.

Will they ever learn?

 

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Autism: Hot Water

What was it I was trying to say?

An entire blog post to share that my husband had our hot water tank replaced, and I didn’t talk about that at all. So like me, I have to share all the small details to ensure that my story is 100% accurate with no room for misunderstanding (of course, it seems even with all that – or maybe because of all of that – I am frequently misunderstood anyway.)

So a post about my new hot water tank instead became a post about going swimming, and why (though I love it) I don’t do it very often.

We have lived in this house for 14 years (and nearly a month.) My husband bought it for us, with my input, when we were getting married. When we were looking for a house, houses were selling fast! This was the fall of 2003 just before prices jumped so much that we couldn’t have afforded to buy a house at all. We put our offer in for three other homes before we bought this one.

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One of the issues in choosing a house was that I was running a daycare at the time. There were many regulations to running a licensed in home daycare, and most of the houses we looked at might not have met the rules. I suppose it didn’t help that I knew that if I had to worry about everything my husband was doing in the daycare/house we wouldn’t have had a good marriage, so I was insisting we have separate space for living and childcare – and I never even considered that we could use the main floor for my business, and the lower level for our home… and the daycare had to have two exits, so… it took a lot of houses to find one that suited.

Okay, so this blog isn’t about my daycare either…

When we bought the house, it had a really nice, all one piece, bathtub. It looked very inviting, but I quickly found out our hot water tank wasn’t large enough or strong enough to get enough hot water for a bath (for adults anyway.) It was fine for little children, even when we had three having baths one after the other and another having a shower after that.

For myself, though, I could only get a couple of inches of water warm enough in the bottom of the tub before it was cold coming out of the tap. So for fourteen years I stuck to showers in this house. Great for getting clean and conserving water, but not great for soaking – and I have had a lot of issues with back pain, foot pain, and general aches… I could have used a bath.

But the tank had been replaced only a few years before we bought the house, and it seemed selfish to me to ask for a new hot water tank just so I could have a bath. No one else cared, and we thought we had enough hot water for everything else.

Turns out we didn’t have enough for our dishwasher either. We always got our dishwashers from the thrift store, so when the dishes weren’t getting clean enough, I just thought it was because they were second hand. Then another of a long line of machines we tried broke. There was no way I was going to pay hundreds of dollars for a new one that might only last a few years, so I started washing by hand. That is when I realized we didn’t have enough hot water for that, either.

Plus, the tank we had was nearly 20 years old, and we found out we would have to replace it anyway due to insurance reasons. So my husband agreed.

Now I am able to have a very hot bath – so hot I have to turn on the cold water about halfway through just so I don’t burn myself getting in.

And it is so nice.

I might not get the exercise that I would get from swimming, but it provides for all other benefits without all of the effort.

  • No leaving home.
  • No crowds.
  • No wet clothes to deal with after.
  • No chlorine (well not nearly so much anyway.)
  • No extra shower after.
  • No pre-booking transportation
  • Very little pre-planning.
  • Lots of calm!

Besides, I can get my exercise in other ways without having to go so far from home.

 

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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.

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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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