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Category Archives: Autism: Child and Teen Years

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: What Could I Be?

It was early in the visit, I think, and it took me a long time to try to figure out which words I should use. The words are always important, for I have found that if I choose wrong, or say it in the wrong way, or… people seem to think I am attacking them.

Not that my mom responds in that way, but enough people do that it has become a major concern every time I want to ask or say anything of any importance to me.

Was I good at anything as a child?

What was I good at when I was young?

Was there ever anything I was especially good at?

Who was I as a child?

Was there anything you thought I could be when I was a child?

Was I always this broken?

If I had the experience, do you think there is anything I could do?

Did you think I had potential to be anything when I was young? Or something? Or more than this?

Did you see anything I might have missed?

I don’t even know how it came out when I did ask her, for all the time I spent thinking about it. I do know that I was really anxious, and my heart was pounding, and my mind was trying to build walls and block things out, and my hands were shaking.

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I do know it wasn’t easy for me to ask. What if she thought I thought that she didn’t do enough to encourage me when I was young? That certainly wasn’t what I was trying to express. I just… wanted to know if there was maybe something I had missed.

Something I could be. Something I could do. Anything I might be able to succeed at – for this string of failures that has been my life since at least my teens (though the feeling was there long before that) has devastated my confidence until I am blinded in fear from trying again.

I was glad to have my mom there. For years sometimes, between visits, she is not there – and some things are hard to ask on the phone, or even in emails. This was one of them.

Was there anything I was especially interested in?

“Writing,” she said. “You were always writing.”

“You never wanted to play sports, or work in teams, or do things with other people. You just always had paper and pens, and I don’t even know what you were writing most of the time. You just loved to write.”

Well… there you have it. What I am, I’ve always been. There is nothing I love to do more than write.

 

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Autism: Shouldn’t Have Gone

After several months of exhaustion, I finally had some energy. Every day I got more done, and felt better about the way my life was going. And then…

It rained.

It rained for days, and I felt myself growing more and more hopeless and tired. Try as I might, I could not bring myself past the depression, or regain the hope I had so recently held. For rain? I wondered. And likely that was a lot of it. Certainly it was all I could think of. Until…

I went to life group (Bible Study) and was reminded of what we had talked about in church last week. I guess I had blocked it out. I used to be pretty good at that – or so I thought. I spent years dealing with that very issue. I should have been past it already! At least I thought I was mostly past it.

Sure, there were moments when the memories overwhelmed me, but it isn’t like I think about it all the time. It isn’t like it affects me all the time. I mean, lots of woman have gone through it, right? But most women still live okay. Isn’t the statistic like 1 in 5, or 1 in 3 even? If so many people have experienced it, why should it cause me so much pain?

I dealt with it for years. Most people close to me know about it, it isn’t like I am carrying this big secret alone or anything. Plus I have my faith. So many people don’t even have that.

Forgiveness has been given. The man died long ago. I don’t experience that anymore.

Unlike for most of my teens and early twenties, I am able to close my eyes without having to battle against flashbacks most of the time. They only come when I am talking about it, or thinking about it, or… someone asks about it.

Maybe that is why the week has been so hard. They weren’t talking specifically to me, but I still knew this was my history, too. It made me think about it. It made me remember.

But the week wasn’t so bad. Sure, Sunday at church was hard – but the afternoon was nice, and I spent it outside. I forgot, as I replaced my negative thoughts with plans for my garden. Monday, Tuesday, and Wednesday were alright, too. I had energy, and got a lot done in my house. Thursday it rained, and though I forgot the message, as the time for life group grew nearer, I realized I really didn’t want to go.

Vacation July 2016 004

Only, aside from how chilled I felt due to the rainy day, and how much I would have rather spend the evening with my dogs, under my blanket, watching Netflix – there was no good reason I could find not to go. So I went. And then I remembered, and realized it would have been better for me had I stayed at home.

So Friday was really hard. I was so depressed that nothing at all seemed to have any hope. “What is the point,” I thought. “Nothing I do will make any difference anyway.” It rained and rained. It rained so much that a couple of houses not far out of town were flooded, and destroyed by mudslides. (The people were okay, but maybe the pets weren’t.)

Well, the days were rainy, and the days were hard – and I thought it was all about the weather. But perhaps there was more to it than that.

 

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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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