little boy with autism stimming

To My Son, Your Stimming Is Beautiful

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I hear your voice from the other room:

“Hello, Harri. I am running about in the kitchen! I was running about and then you came!”

It is the longest utterance you have addressed to your sister. In fact, I can’t ever remember you speaking directly to her in this way before. My heart swells.

I creep in to watch you, in case you have more to say, but you turn away shyly; my presence has dispelled the moment.

“Sweetheart, that was lovely. It is wonderful to hear you speaking to Harri so nicely and being kind to her. Well done. What a good boy.”

Your face contorts with emotion, mouth open, eyes wild. You raise your hands up towards your eyes, twisting finger between fingers, shaking your whole torso. This pose is held for a moment before you move, turning away, your legs carrying you off with a joyful little trot, and you twist and flap your hands again.

I know these movements. I know them like I know your face. They tell me how pleased you are with my praise. They tell me your little body, your little heart, your little soul is filled with feelings and sensations too overwhelming for you – you cannot process them; they must find an outlet some other way.

If you type stimming into Google, it says this:

“Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.”

I was inspired to write this post through reading two articles. The first was one entitled “If I Could Take It Away” by Gym Bunny Mummy. The second was called “11 People With Autism Explain What Stimming Feels Like.” It included this quote from Katy Kennah:

“Stimming is like breathing… just as natural, just as important.”

Stimming, my love, is like breathing for you; it is necessary. Necessary for you, invaluable for me.

When the world is too bright, too busy, too overwhelming, it tells me what I need to do to help you. You bite your lips and fingers, tug and cover your ears, grind your teeth – sometimes you make noises or repeat words, words that seem to have no relation to what is happening around you. And I know you need a quiet place to be alone, the pressure of your weighted blanket cocooning you in your own little world, way from the painful noise and confusing chaos.

When you are happy and overwhelmed with pleasure and amusement, it tells me you love me, that I am doing something right. You raise your legs as you trot along, hands flapping, fingers twisting, mouth forming strange shapes in between your laughs and shouts. I know you are happy.

I have heard the questions – “Does he do that all the time? He looks quite uncomfortable. Is he in pain?”

Yes. You do it all the time. Sometimes the world is painful to you. Sometimes it is a symptom of your unadulterated glee.

When I first realized how much you do these actions, how much they consume you, I admit I was full of fear. They make you stand out. They make others stare. Your youth, at this moment in time, protects you. An inability to control emotions is so common in children of your age. Yet still, already there have been stares. Already, I have tried to make you stop, when I thought someone might see you and judge you unfairly. My gorgeous boy, now I see, stimming is like breathing to you – how could I possibly seek to stop you? Your breathing is my breathing, your comfort my own, your pain unequivocally mine.

But more than that, these actions are part of you; I don’t remember a time when you didn’t do them.

Sweetheart, although I know your stimming may make you seem strange, may make others point or laugh or wonder what is “wrong” with you – I don’t want to take it away. To take it away is to take away part of you. I don’t want to change you; I want to change the world so when you stim the world sees what I see: your passions, your love, your fears, your soul shining through – and you, all the parts of you, are beautiful.

Follow this journey on Someone’s Mum.

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How I Try to ‘Fit In’ as a Person on the Autism Spectrum

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I stood there, looking around me, observing, wishing I was part of it. I so longed to be in the middle of the group, but no, I felt like I was forever destined to be on the outside looking in. I waited, hoping someone would come and speak to me and include me in their chat. But if they did, what would I say? I’d only be tongue-tied as usual and say nothing. People seem to find it easy mixing with others, but it’s a huge challenge for me.

I asked myself, “How do I make small talk?” But I couldn’t come up with the answer. If only. What should I say if I approached anyone? Except I wouldn’t. I’m not like that. I can’t do it. 

I was fed up and looked away. It was too upsetting to see everyone laughing and chatting while I watched from the periphery. At the same time, I realized I dreaded anyone coming over and speaking to me. I wouldn’t know what to say, and they would soon get tired of my awkwardness anyway. People always do.

I just longed to be different, but how could I learn the social skills everyone else took for granted. 

I wandered off, wanting to go home and get away from the world I didn’t feel part of. I wanted to hide from this alien planet. Or was it me that was the alien? Maybe I’m just a bit different — unique is a better way of putting it.

As soon as I shut the front door behind me, I started to relax. The tension just washed away. I was in my safe, familiar environment again, away from the people I just couldn’t understand, forever destined to be on the outside looking in. 

But I have discovered that Facebook is a safe way of having access to this alien world. I post whatever I like and join groups on Facebook about topics I’m interested in. I don’t have to communicate directly with people. But at the same time, there is an outlet for me. No one realizes I am different. I am accepted as I am, and it eases the loneliness. I can comment on other people’s posts, and they comment on mine. Virtual conversation is possible on my terms. My awkwardness isn’t noticed. It is a safe environment, and no one really knows who I am. In this setting, I am no longer on the outside looking in, but part of a larger, worldwide community.

I have also recently learned that a good way of trying to “fit in” is to ask people how they are. I never used to do that. It never occurred to me that I should. I’m not saying it’s easy because it isn’t. It feels uncomfortable and awkward but I try. I don’t succeed all the time, but it’s a useful tip to fit in a world that just doesn’t make sense to me.

Lead photo source: Thinkstock Images

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I Am Autistic. Am I Mighty?

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I don’t feel mighty when I wake up in the morning, still exhausted from yesterday. Even though yesterday was a regular day. Even though I’m eating well. Even though I got nine hours of sleep.

I don’t feel mighty when I walk through the crowds in the farmer’s market and the noise assaults me like a waterfall: pounding out all the energy I have to manage myself and drowning me in the pool of my own world.

I don’t feel mighty when I can’t handle the curry at a chili cook-off. Yesterday was fine. Why must I be so sensitive today?

I don’t feel mighty when I fail to communicate how much I need to go someplace to calm down. Or when I don’t go take care of myself, even if that means ditching the person I’m with. I hate feeling that it’s wrong to leave to take care of myself.

I don’t feel mighty when I come home, lock the door to my room, and cry. I don’t feel mighty having a meltdown. How could anyone feel mighty in that dysfunctional state, where what’s inside doesn’t come out right and what’s inside is a filterless mess of thoughts?

I don’t feel mighty when I’m told that I should be careful of how I act in a library, considering it’s a potential place of employment for me. It’s good advice, but the reminder cuts to the core of my underlying terror. I’m afraid others are compounding the stringent judgment I’ve laid on myself, simply for not being able to handle myself on a normal day. Somewhere in my mind I’m still blaming myself for the fragile state I was born in, and blaming myself for not knowing how to care that fragility when I ought to be astounded that I have an inkling as to how I can care for myself.

But maybe the mighty don’t need to feel mighty to be mighty.

I am mighty because I get up in the morning, even when I’m tired. I adjust my day according to the energy I have. And at the end of the day, I take care of myself by going to bed on time.

I am mighty because I know what things will make me feel soothed as much as other things disturb. I am mighty because I use those things to calm down and keep me in a safe place.

I am mighty because I leave. When it’s too much for me, sometimes I do leave, shoving away all of the false thoughts of failure. It’s not wrong to leave to take care of myself.

I am the mighty because I choose to take the time alone to cry and do whatever else I need to do to reset. I suppose if I have to break down, there aren’t many safer ways of doing it. I am mighty because my life isn’t as dysfunctional as it feels like it is when I’m in a meltdown. I’m using the skills I have learned to manage myself to be able to live on my own, excel in school, and somehow still manage to make and maintain meaningful friendships.

I am mighty, because I can celebrate the small things that are actually huge steps for me, like being able to participate in a group setting. I am mighty because, in spite of my fear, I’m learning to say, “This is overwhelming, I need to leave.” I’m learning to gently care for my fragile self: to forgive what I lack, to have patience with what I’m learning, and love myself in whole, even the dislikable parts. 

Yes, the mighty do not have to feel mighty to be mighty, because mighty has become a name to be used for the people who survive panic attacks, wade through the drought of depression, and live with chronic illnesses. And yes, even me, an autistic, who breaks down every once in awhile after doing a phenomenal job of taking care of herself.

I am a part of the mighty.

Image via Thinkstock Images

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Mom Creates Autism Law Enforcement Response Training for Police Officers

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As a former police officer and mother to a child on the autism spectrum, Stephanie Cooper knows how important it is for police officers to be able to recognize autism. To help ensure safer interactions between the police and people with autism, Cooper started Autism Law Enforcement Response Training (ALERT), a training program for police officers that provides officers with sensory kits designed to help autistic people.

“People with autism have communication issues, and law enforcement officers need to be aware that their typical approach when responding to a call or an emergency situation with someone with autism spectrum disorder may not work,” Cooper told The Mighty. “By the police being aware of people with autism it helps ensure the safety of not only the person diagnosed with ASD, but the police on the scene as well.”

Cooper created ALERT after watching a police officer interact with her son, who’s on the spectrum. “When the officer arrived [my son] was having a sensory overload,” Cooper recalled. “The officer luckily understood about autism and helped me keep David calm while we filed the report. But it got me thinking what would have happened if the officer did not know about autism.”

Cooper asked the officer if his department had any autism training programs, but it did not. Wanting to ensure more positive interactions between law enforcement and people with autism, Cooper began researching autism training programs for police. “I realized even though there are some training programs out there for the police that there are still not enough training programs available to assist every law enforcement agency,” she said. “So I offered to train my local police agency, and it all started from there.”

As part of ALERT’s “Autism 101” training, Cooper trains officers how to recognize a person who has autism, what behaviors they may exhibit, what types of calls may be received and tips for how to interact with a person on the spectrum.

“Officers [should] know that an autistic person may flee when approached by an officer, and fail to respond to an order to stop,” Cooper said. “Officers should not interpret any of these actions regarding an individual with autism as a reason for increased force. Officers [need] to take their time when dealing with an individual with autism, to allow for delayed responses, to speak slowly and clearly to an individual with ASD and to be aware that autistic individuals react to their environment.”

Once they’ve completed “Autism 101,” officers receive a kit filled with items designed to help people with autism, such as visual communication cards and a variety of calming sensory items.

So far ALERT has provided training and more than 100 kits to law enforcement agencies in Cooper’s home state of Florida. In December, Cooper will be training the Hammond police department and the Tangipahoa Parish sheriff’s office in Louisiana, and handing out 200 autism sensory kits.

Beyond Florida and Louisiana, Cooper is working on expanding ALERT into a nationwide initiative, with the goal of training and giving kits to law enforcement agencies in every state.

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How a Website Helps Explain My Experience as a Person on the Autism Spectrum

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I remember many years ago, not long after I was officially diagnosed as being on the autism spectrum, I had been searching for ways to explain my struggles. I was trying to be a self-advocate, but I just didn’t know how to put my thoughts into words quite yet. I turned to the internet for help. Somehow, I came across a link for a website associated with PBS called Misunderstood Minds. Considering I felt misunderstood, I clicked on it.

The site was based on a PBS special about learning differences and disabilities. It included interactive activities where you had to listen to and follow instructions. After completing the activities, you find out if you did them correctly or not.

The link I had clicked on brought me straight to the “Attention” page, where I saw the words “Experience Firsthand” at the top followed by some activities to try. By this time, I knew that I learned well through experience, so I decided to try one.

The auditory activity hit so close to home. I was supposed to listen to the directions from the teacher and put cards on the screen in certain places. When I was done, the cards would flip over to show one big picture. By the time I was done, I had missed the instructions for over half of the cards, and my big picture was an unfinished, jumbled mess.

But as a result, I realized I had found my way to explain some of what I experience. It was a way to share the difficulty I had in trying to process what people are saying, especially while distracted. It was also a way to show that, no matter how hard I tried, I couldn’t seem to get things right. I needed help, and this activity allowed me to express that in a way that I hadn’t been able to do before.

The reason the activity helped me to explain what I experience to others is because I knew that, no matter how hard people tried, they would still struggle with it, too. At one point, the teacher in the activity even mentions that everyone needs to “listen up” or they would get it wrong. Well, this experience showed to others that even when I tried my best, I would still mess it up. And after struggling so much every day, multiple times a day, sometimes I would feel so helpless and defeated that I would give up instead of asking for help. This activity helped explain why.

Over the years, I’ve found more words to communicate my needs and have become a major self-advocate. However, this activity still provides insight into my world. I fall back on it, from time to time, using it as a tool when I struggle to explain why I need help.

Lead photo source: Thinkstock Images

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Real People, Real Stories: Autism Spectrum Disorder E-Book

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Whether you (or someone you love) have just received an autism diagnosis, have been a part of the autism community for a while, or simply want to learn more about autism, this book of stories is for you. This book is comprised of stories from the perspective of people on the autism spectrum as well as parents and other loved ones in the community. You’ll read powerful responses to questions like, “What does autism feel like?” and “Why is eye contact hard for you?” You’ll learn about the importance of autistic “obsessions” and the impact eating issues can have. You’ll also follow the journey of a wife and her husband after realizing he, like their daughter, is on the autism spectrum. You’ll find these stories and more in this e-book. Click below to download our free e-book. 

The book contains the following stories:

When People Say ‘You Look Tired’ by Lamar Hardwick

Someone Asked My Son With Autism Why Eye Contact Is Hard. This Was His Answer. by Lisa Reyes

When People Wonder If My Daughter Really Has Autism by Jessica Wright

What It’s Like to Deal With Eating Issues as Someone on the Autism Spectrum by Erin Clemens

What a Meltdown Feels Like for Someone With Autism by Emma Dalmayne

When We Realized My Husband Has Autism by Jessica Offer

Autistic ‘Obsessions’ and Why We Really, Really Need Them by Chris Bonnello

My Answer to the Question ‘What Does Autism Feel Like?’ by Lori Sealy

When a Boy With Autism Asked Me What It Was Like When I ‘Had Autism’ by Amy Gravino

If the World Was Built for Me by Rhi

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Real People. Real Stories.

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