silhouette of mother and son walking together on beach at sunset

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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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.

Follow this journey on Ausomely Autistic.

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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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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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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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Sometimes people are caught off by my blog’s title, “Anonymously Autistic.” People ask me if I am Anonymously Autistic because I am ashamed of my autism. Please allow me to explain — I started my blog anonymously because I love my privacy, not out of a shame for my autism. In fact, I quickly realized I needed to share so others could see autism from my perspective. Some days suck, but overall I love my life and would never want to be “normal” or not autistic.

I generally keep to myself with personal things. Speaking about matters of the heart has never been easy for me, so I don’t. My blog became a place where I do something completely out of character: share my feelings.

For me, it is easier if the people around me don’t know my feelings or else they may ask me about them, and I would be forced into unwanted conversations. I enjoy talking about my passions and other matters, but my feelings and emotions have always been sacred to me in a way.

The more I write, the more confident I get in speaking about autism. Most of my problems come from whenever I choose to share face-to-face. I hide my emotions and keep things to myself. People don’t get to know me and don’t see my autism.

I’m always calm and composed (because I always run away and hide before I fall apart). It looks like I’ve got it in control. Nobody ever sees me struggle.

People say these things in the nicest ways; they have no idea how much their words hurt or how wrong they are.

You’re not really Autistic right? It’s a misdiagnosis?”

“Asperger’s? You are too nice, you definitely don’t have that! I can’t believe it.”

“Are you sure? Have you gotten a second opinion?”

“You are not Autistic.”

“There is nothing wrong with you. I think you are great!”

“We’re all a little different.”

Or when I ask for accommodations for sensory troubles:

“Everyone likes natural light. It’s not fair to give you special treatment.”

“You complain too much. Just relax.”

“I know you said you wanted to meet in a quiet space, but I think you will love this bar.”

“It’s not that bad. Look, everyone else is having fun.”

“You are overreacting.”

“I think you can do it, if you try harder.”

“Don’t make excuses.”

Worse is when they say nothing at all. When you say something, they give you a look. Doubt. I recognize it now that I’ve seen it over and over again.

The face people make when they think you are telling them a decelerate lie. It is a look that stops me cold in my tracks and is the reason I’ve stopped mentioning my autism in face-to-face conversations lately.

I have a theory that if people saw a unicorn in a field of horses, they would mistake it for a white horse because they do not believe unicorns exist.

I am feeling a bit like that unicorn. People can’t see me because they don’t know Aspies like me are out there.

A unicorn, something that challenges their beliefs. I am right in their faces and they can’t even see me.

Follow this journey on Anonymously Autistic.

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