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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: Vulnerable

There I sat, on the couch, in another person’s house, with a blanket over my legs. Though it was only a few days before, I had blocked out the message – yet when my husband handed me my study sheet, it all came back to me.

It was going to be a difficult night.

The message? Dinah, daughter of Jacob, had been raped and was being held captive. Her brothers tricked the tribe involved into having all of their men circumcised. “While they were still in pain,” they killed them all, and brought Dinah back home.

Hard biblical stories which aren’t found in the children’s bibles. Difficult messages full of pain.

I remember listening on Sunday thinking, “I can relate to this story, yet… I am not struggling with it now.” And I believed that while I was in church. Then I went home, and my mind was flooded with flashbacks, and pain, and all the ways this history still effects me today.

Years later, it still effects so much of how I live and view the world. Right down to pretty much every thought, every emotion, longing, fear, desire… everything about the men around me.

It makes me vulnerable. It reduces me to the state of the child I was silently begging for someone, anyone to rescue me. A child who learned early on that popular opinion on who is and isn’t a good person was fatally flawed, so she could never believe what other people agreed as truth. A child, struggling to trust anyone to protect her – even God. A child who believed there must be something fundamentally wrong with her to cause her father to use her in that way.

me at 7

Beneath the Autism that made it hard to speak, confusing to be around people, isolating in my ability to fit in, painful in the overwhelming sensory struggles… Beneath the failures throughout my adult life which shattered whatever confidence I once had that things “have to get better.” Beneath the exhaustion which often overwhelms me so I can barely move. Beneath the hurt of a lifetime of people telling me I was doing things wrong. Beneath it all, there is this – and this affects everything.

I walked out of the church, and noticed several women in tears. It didn’t shock me. I was one of them, yet… for the moment I still felt okay. Until I got home and realized I wasn’t. Not at all.

And there I sat with the paper in my hands, and though I was cold, I was filled head to foot with heat that was shame… I guess it was shame. I couldn’t move. My ability to communicate locked up in my head as it constantly did when I was a child. I couldn’t have spoken if I wanted to; I am not sure I did want to.

What would have been the point?

So I heard what was being said, but all I could do was sit there locked inside my body, hating myself. I couldn’t look at any of them. I couldn’t look away from the study sheet – and though there were only a handful of questions, I spent much of that hour reading them over and over again.

I thought I had mostly gotten past it. What I realized anew this week was that it is still very much a part of me, and likely will be until the day I die.

 

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Autism: My Dad

My dad was good at a lot of things. As I was lying in my bed yesterday afternoon, exhausted, and depressed, and overwhelmed by life, I was thinking of that. He was good at a lot of things. I am not really good at anything, and that fed my depression.

My dad was a good son. He was a good brother. He was a good friend. People liked him, and I think he genuinely liked people. He was the first one people often called for help. They would frequently drop in unexpectedly, and he would welcome them in. I remember at least two instances in my childhood where people were really struggling, and my dad invited them to come live with us; and they did.

Frequently my dad took people out for coffee, or just for drives, and he talked to them. My dad was very social, and was very easy to talk to. He was generous, and giving, and caring. He liked helping people. He liked being useful.

My dad liked spending time with people. We spent a lot of my childhood visiting with his friends and family, and camping as a large group with his extended family. He would go fishing with his brother and brother’s kids, and sometimes take us; when he didn’t, he always brought small gifts home with him to show he was thinking of us. He would take us and go to amusement parks with his sisters, our cousins, and his parents. He would take us to the drive in theatre (a lot!) or just rent movies and invite people over to watch at home.

My dad liked spending a lot of time with us. He would take us for walks along the creek, and on picnics, and for drives just to talk. When my dad was home and awake, he was almost always visiting. He even came with my older brother and I to nearly every cadet meet we had. He would bring donuts he got free from Tim Horton’s because, of course, he was friends with all the workers there. Even my fellow cadets (I’d like to say friends, but since I didn’t talk, I guess I wasn’t much of that to them) liked him.

My dad liked to sing. He had a great voice, and when we were on our drives, he would put in a tape and sing along. He would encourage us to sing too, even though my younger brother and I did not have good singing voices; he never criticized us for it. I still love the songs that he used to sing.

My dad was a hard worker. Though he worked in a steel factory, in a physically demanding job (and though he was injured before I could remember, and had a bad leg as a result), and though it was shift work which changed week to week, he never complained about having to go to work. He worked full time, and was the sole income provider for our family for a long time. Even so, when he wasn’t working or sleeping, he was visiting with, and helping people.

My dad was good at woodwork. He finished our basement in the house we moved to when I was four, and put a lot of detail into it. He built us a nice toy box/bench, a corner cabinet, a desk… He kept our homes in good condition. He even whittled animals and things from wood, and they were really nice. He was just good at it.

My dad was good at a lot of things, but the brokenness in him… I guess that is why people didn’t believe me when I did speak – for my father was good at a lot of things, but the deepest seeds of evil he pretty much reserved for me.

My dad was good at a lot of things. I am not really good at anything. Maybe that is why I am depressed. Maybe.

Vacation July 2016 014

 

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