Close-up of shoes walking on a paved sidewalk

It’s been one year since my autism diagnosis. I almost never dwell on the past. It seems pointless, and I have too many blank spots. This time I want to, before I forget what my life was like before and lose the sense of newness I’ve found over the past year.

So many things are different. Pursuing a diagnosis absolutely was one of the best things I’ve ever done. It made sense of my life, freed me from my worst demons.

I worry less about what others think of me these days. Beating myself up over things I can’t change is pointless. Passing as “normal” has come to feel like an unnecessary concession and personal defeat, as though I’m allowing others to set the rules for an exhausting, un-winnable race. Autism is my explanation. It’s not my excuse or apology. It mediates everything I experience.

I’m more happily “unwrapped” now. I pace, bounce up on the balls of my feet, rock, cover my ears, stare at people to keep track of what they’re saying… whatever I need, whatever helps. It’s such a relief.

I finally have accepted that being pressured and bullied aren’t things I deserve because I’m a failure or unlovable. They are things I permit. It’s a choice to stand up for myself, draw lines in the sand, express my desires and needs. It may get loud and be draining, but it’s absolutely necessary. Besides, people being angry, impatient or embarrassed won’t “fix” me; it’s only going to cause me to shut down and leave me unreachable.

Words still are the slippery fish they’ve always been. Sometimes they school downstream by the hundreds. Other times, they hide just out of reach where I can’t catch a single one. It’s gotten to be fairly amusing, and not just for me.

I’m pretty upfront about my autism these days. At first, I told people almost as an excuse, a get-out-of-jail-free card for my quirky behavior. Now, I tell them in order to help educate them about autism and to improve our interaction and, hopefully, relationship. Surprisingly, being upfront about autism is pretty easy for me. Not so much for other people.

I have a lot to be thankful for. Autism has, after 35 years of at times tumultuous marriage, brought my wife and me closer together. We still push each other’s buttons, but with more awareness of the reasons and necessary limits. My adult children still love their dad. I have new friends in the autism community that absolutely “get me,” no explanations or apologies required. I have an expanded sense of purpose thanks, in part, to an adult support group I started.

Like many autistics, I have skills and abilities I wouldn’t have as a neurotypical person. These skills are a lot more “available” to me these days, now that I’ve left behind the depression and anxiety that used to weigh me down. So, I now volunteer with a purpose, focusing on my abilities and how I can make a contribution. It’s amazing what a difference the simple act of feeling good about myself has made in almost everything I do.

Today, I turned 64. Perhaps it’s just my age, but the present… this moment… is more important than before. The past, other than the miracle of watching my children grow up, is of little concern. The future… well, it’s largely what I choose to make of it, not something to worry about.

It’s good to be older. Trivial things make way for more important ones. Clarity and contentment slowly creep in. I now have random hours and whole days when I’m happy and content, something I never experienced before my diagnosis.

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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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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.

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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.

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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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