Boy with head on pillow and a blanket

When Time Stands Still for My Son on the Autism Spectrum and Me

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It’s bedtime — a glow-stick-cuddling kind of sleepy time tonight. Like many parents, I look forward to this time of evening. A busy day comes to an end, and bedtime finally comes around. It’s a fond part of our day. It’s calm, it’s routine and we’re in no hurry.

Bedtime stories and cuddles galore, drinks, toilet trips… just one cuddle more.

They as reasons alone do not define why I love bedtime so much. It’s the time of day you are your most chatty, Sonny. Some days I’ll admit, I would appreciate you being a little less chatty and a little more sleepy. Especially those nights after the one before where you go to bed at 7 p.m. but you’re wide awake at 10 p.m. and refusing to go back to sleep unless you have me by your side.

There are some times I’m so exhausted I fall asleep lying beside you. I wake, often hours later, and take the sleepy stumble back to my own bed. The pillow is cold, and it feels good to rest my head somewhere comfortable. I breathe a sigh of relief as I close my eyes.

It’s late in the evening, the world appears to slow on its axis, and it’s simply you and me. Riley sleeps silently above. He’s always been quick to fall asleep. Riley wiggles and makes silly noises, he’ll tap his fingers on the head of his bed, much to your annoyance. Just moments after his head hitting the pillow, he is out for the count.

This evening, cuddling your glow stick, you told me all you did today. You told me you helped make gingerbread biscuits with Mrs. H today. They were stars and they tasted like sweets. You said they were delicious.

I asked you if you’d saved me a bite, to which you said nothing. Your eyes have always told me everything I need to know. I ask where the biscuits are now. “In my tummy. They tasted like sweets.”

It was over three and a half years before I heard you speak to me. When you have something to say, I listen intently. I watch your eyes as they sparkle. I hang on to the words as they escape your lips. Your sweet little voice, it echoes deep in my heart.

These moments together are precious.

This time right now is ours.

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The Joys in My Life With My Son on the Autism Spectrum

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There are challenges that can come with autism. Nobody gains when we deny difficult things are in fact difficult. But the thing is, the difficult and at times exasperating things are sometimes all mixed up with the joyful things and the funny things.

Then I could say there are the heartbreaking things. And in the same breath, I could add, yes, but there are also the hopeful things, too!

Many of the things I love most about my son’s personality can be related to Asperger’s. He simply is who he is. I have always loved his strong streak of individualism, his absolute uniqueness. So much of the joy in my own life is due to the joy he finds in his own. He is so bright, so full of life, so passionate and intense. It can be tiring, but it can also be wonderful. Being involved in his life is like being invited along on some vivid adventure I would never have thought to embark on by myself.

I love his pure excitement over small things. I love that he loves his special interests so intensely. I love to watch his hands flapping with joy as he stares at pictures of pots and pans or more recently, various sea creatures. I love his colorful rubber boots that he is never without. I love his detailed, focused drawings of the same thing day in and day out for months at a time. I love how smart he is, knowledgeable about what interests him. I love the way he interprets things literally, although I do understand this might not always make things easy for him. I love his logical, black-and-white mind. I love his creative imagination. He is a bundle of contradictions.

But I know how hard and heartbreaking and mind boggling-things can get, too. I can struggle with exasperation and impatience on a daily basis. Even so, I see the humor in being asked to read the same bedtime story every night for years when that “story” just happens to be a book of unadorned facts about sea creatures. If I try to leave a fact out in order to get through the book more quickly, he knows. The plus side is that I now know a lot about the various sea zones and the strange creatures that live in each.

I also enjoy his literal thinking. I laughed when I told him he was not to use his hand to slap someone and he stopped, looked at his hands and then in a reasonable, conversational tone, asked “OK. I won’t. But what can I use to slap someone then?”

The things we never imagine needing to explain!

I do know there’s the hard. The things that are no laughing matter no matter what angle I look at them from. There’s the heartbreaking and terrifying. The aggression and self-harm, the meltdowns, and more. Sometimes there is an abundance of the difficult.

But sometimes, I simply cherish the moment. I need to look for the tender or the joy in the midst of the hard. It’s often there, all mixed up with everything else.

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Why Stimming Is Not a Bad Thing

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Stimming is OK — it is not a bad thing. Stimming can help an Autistic person self-regulate, reduce anxiety, and express themselves.

Self-injurious stimming, though, should be stopped because it can hurt the individual. This can include cutting, biting, smacking one’s head, etc. This should be approached in a calm manner, and trying to understand why the individual is doing self-injurious stimming is a good thing to do. The individual may have anxiety, or the individual may be frustrated because he or she cannot communicate.

If someone does not want to or can’t do body stims in certain places, such as in a classroom during a lesson, a good alternative can be getting quiet stim toys to stim with. I have found some stim toys I can use during class if I need to. Some of my favorites are my Eni puzzle and my multi-color Klixx. A great place to find stim toys is Stimtastic, which is an online store where you can order stim toys. It has a great selection of stim toys and some pretty awesome chewable jewelry.

So, why is stimming OK?

  • It is a natural behavior.
  • It can help us express our feelings, such as anxiety or excitement.
  • It can help us reduce anxiety and help us regulate ourselves.
  • It feels just plain good!

When we are told to stop this, it’s like we are told not to express our feelings, not to use coping skills for anxiety. We are suppressed from doing something that can make us feel good.

Hand flapping doesn’t hurt anyone, rocking doesn’t hurt anyone, so why say stimming is “bad”? It is only bad if the stimming is self-injurious. So please, if an Autistic person is stimming in a public place, don’t try to stop them unless it is disruptive or if it is self-injurious. If the Autistic person needs to stim in a classroom, try to find stim toys to help the individual.

Stimming is OK. Stimming should be accepted. Stimming is OK — let’s promote autism acceptance by accepting stimming.

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I'm at War With Myself: Parts of My Autism People Can't See

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Sometimes I feel as if I am constantly in a battle with myself, fighting against irrational thoughts in my mind and unpleasant sensations in my body.

Constant nagging in my mind — “You might have left the door unlocked” when I know very well the door should be locked. “You forgot to water the dog” despite leaving them with a full bowl.

Social anxiety tells me I’m not good enough, and I have to remind myself that I only feel that way when hanging around the wrong people or large groups.

It’s like my adrenal gland is extra jumpy. I feel the surge of chemicals flowing through my body, making my heart and mind race. It used to cause panic attacks, but now it happens so often that I’ve learned to recognize the feeling and breathe through it. The sensation is unpleasant and can also lead to sensory overload or meltdown if I don’t relax — so I always relax.

My brain tells me the lights are too bright, so I squint all day until I have a headache and my head is throbbing. I can’t tune out the buzzing light bulbs and humming electronic noises coming from the walls — so I often wear headphones with soothing music.

I get dizzy when I stretch my arms high over my head — probably not related to autism but really annoying because I am short. Just throwing it out there because my readers always surprise me with what we have in common.

The air outside is almost always either too hot or too cold because I cannot regulate body temperature well. I am only comfortable between about 75 to 90 degrees; anything over or under that is really pushing it.

People’s voices stick better in my head than their faces. I often have a very hard time recognizing people, especially out of context. It’s called face-blindness and it can be a pain, especially in a corporate environment.

When I do socialize, I prefer to stick to people I know, because I can’t read the faces of strangers unless someone is laughing, crying or making some other extremely obvious face. I study people I know so I can learn their faces better, but still this, takes a lot of work on my part.

Sometimes I come off as rude. My body language and tone don’t always come out the way I want them to. Misunderstandings are a way of life for me. I’m used to this now and often don’t even bother trying to correct people because they don’t understand tone not matching feelings, etc.

I take things literally — but normally can figure things out if there are context clues.

Following spoken directions is difficult — but if you give me time to write down what you are saying so I can read it later (over and over), I can get things done. It’s not that I don’t understand; it’s that I understand in a different way.

I believe my short-term memory is about half as good as most people. It has been theorized that people can hold about seven numbers in their working/short-term memory — a phone number.  I’ve never been able to hold more than three numbers in my head at one time. If you say something to me when I am trying to hold those three numbers in my head, the numbers will probably vanish.

Side note: my long-term memory is forever.

All of these invisible things. I am constantly battling myself, trying to fit into a world where people can’t imagine what I’m going through. When I try to tell them, they look at me like I am dishonest — and honesty is important to me.

It hurts when you ask for help and nobody is willing to stick out their hand, so I keep these things to myself.

Follow this journey on Anonymously Autistic.

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Why I May Use That ‘Annoying’ One-Letter Response to a Text

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I’ve seen posts and memes on social media about how important it is to put some thought into messages or texts. Some joke over how “annoying” it may be to receive a simple one-letter response, such as “K.” But as someone on the autism spectrum, that one letter may be all I can come up with.

Before I was diagnosed in 10th grade in 2005, I didn’t really understand the significance of the phrase “think before you speak.” Communication skills weren’t exactly my forte. I would speak out of turn and even jump into private conversations without realizing how rude it was. The ability to tell how others were feeling was like an alien concept. I had no idea what tone of voice was. I just knew it could get me into trouble.

Now that I’m older, I’ve come to appreciate these skills. With hard work and maturity, I’m much more aware that my words have an impact on others. However, it’s still a major challenge to figure out how to use them.

So when I receive a message or text, the timer begins. I feel as though I have this small window to understand what the person has said and think of a meaningful reply. Often, it takes me so long to do this that I may seem to be ignoring them. Realizing this — and that I need to say something in response — I end up sending that infamous one-letter: K.

I’m starting to understand communication skills better. I’ve certainly come a long way from jumping into conversations, to carefully thinking through a response. Yet, it still seems to be a challenge for me. While some may groan in frustration at my one-letter response to their text, I hope they understand the time and effort put into it.

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The Challenge of Social Anxiety for a Person on the Autism Spectrum

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When I was being evaluated for autism spectrum disorder (ASD) at the age of 20, my doctor asked questions to make sure my diagnosis was ASD and not social anxiety disorder. But both social anxiety and ASD seemed to resonate so strongly with what I had experienced in my life.

Now I am seven months out from receiving my diagnosis. I am more self-aware than I ever thought I would be. I think I understand why I identify with both ASD and social anxiety. There are two ideas I have that differentiate ASD and social anxiety: for me, ASD can be too little social awareness, while social anxiety can be too much social awareness.

As a child, I never understood the social rules some others seem to take for granted, like why I was expected to hang out with the kids at parties and not the parents. This fits my ASD diagnosis, but as a child, I didn’t feel the anxiety that comes now. I was oblivious that I was breaking “rules.”

Now I am older and understand more of these rules and can fit in to my surroundings very well. I learned through being left out of groups. I learned through seeing people who were once great friends of mine maturing in these “weird” ways I could not seem to grasp and leaving me behind.

As an adult, I place that feeling I had with those kids growing up in the middle of all my social attempts. I am constantly worried I might lose one of the real friendships I am finally learning to manage successfully. This leads to anxiety, almost to a major effect at times.

The good news is this: I am learning how to manage both. Every day is like an adventure — I learn a new social rule and push through some social-related anxiety. It has definitely been a challenge, but I am learning how to accept myself… slowly, but surely.

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