3 Things I Wish the World Understood About My Autism

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I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully.

I can explain, bemoan and wish away a lot of things about me and my autism: my troubles finding the right words to say what I really mean, my social processing lag and limits, my rubbery facial expressions, my anxiety, my sensory system’s dysfunctions, my brain’s tendency to get stuck in physical self-destruct mode and land me in the ER. I can complain about the suckiness of being socialized and educated as an autistic and as an outsider, about lack of supports and understanding and always needing to educate.

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. (Mine are sudoku and “Glee.” I am not ashamed.)

Now, maybe you do not understand. Because “obsession” and even “perseveration” have specific dictionary and colloquial meanings which everyone uses and understands and which do not even come CLOSE to describing my relationship with whatever I’m obsessing on now.

It’s not just that I am sitting in my room and my heart is racing and all I can think about is “Glee” and all I want to do is read about it and talk about it and never go to sleep because that would take time away from this and that has been my life for the past few days. It’s not just that I am doing sudokus in my head or that I find ways to talk about either numbers or “Glee” in any conversation, including ones about needing to give a student a sensory break so he’ll stop screaming and throwing things.

(It’s not just the association and pressure of shame, because whenever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)

It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal.”

It’s that the experience is so rich. It’s textured, vibrant and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about “Glee” or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part, autism is not worth having.

Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered “acceptable happiness” that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echolaliated phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy.

If I could change three things about how the world sees autism, they would be these:

1. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel.

2. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate,” stop shaming and gas-lighting us into believing that we are never, and can never be, happy.

3. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience.

I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

And why would you want to contain something like that?

This post originally appeared on Just Stimming.

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I Felt Depleted After Her Diagnosis. One Little Moment Supercharged Me.

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I’m an associate researcher specializing in autism spectrum disorders. I’m also the father of a little girl who was diagnosed with childhood autism back in 2009. Shortly after her diagnosis, I decided to dedicate my career to understanding her illness. Since then, I’ve learned that some things are just impossible to fully understand.

When my daughter was born, I remember thinking — like most new parents — that she was the most beautiful and perfect baby that I had ever seen. But within a few months of taking her home from the hospital, her mother started to express concerns. Our daughter was happy as a clam, but something felt off.

black and white photo of young child smiling at camera

At 10 months, she was late sitting-up and she preferred to taste her toys rather than play with them in an age-appropriate way. Doctors said that we needed to relax — she was a little behind in her development but still within the normal range.

They say that parents know their kids best. By the time our little girl turned 2, our gut feeling intensified and we knew that something was wrong. So I did what most people would do in that situation — I turned to the Internet for answers. I wasn’t exactly a child expert, to say the least. She was my first and I had barely even held another baby! So I was oblivious to the telltale signs that were all over the Internet: dislikes cuddling, refuses to be held close, uninterested in others… That was not my darling girl.

The day after her third birthday, we took our daughter to the hospital. There was something about the milestone of her birthday that intensified our suspicions. She refused to do the Baley Scales of Infant Development assessment and was diagnosed with an autistic disorder (at that time called childhood autism) later that week.

I remember standing in the clinic, trying to breath, thinking “OK. Here we go.” We knew all along that something was off — and in a strange way (I find this difficult to acknowledge) the diagnosis came somewhat as a relief. At least now we could start moving forward.

It wasn’t easy.

Even though I initially accepted the situation, I felt that my life was falling apart. What did it mean? How would we cope? What next?

A few days after the diagnosis, I was standing in the kitchen preparing a snack for my daughter. It was a day like every other day before the diagnosis, only I felt depleted, like an empty shell. Then it happened: I looked down at her sitting on the floor and she smiled at me. That was it. My eyes began to well up. My heart melted with joy like it always had when I would see my baby smile.  I realized that she hadn’t changed. I had.

At that moment, I decided to fight for our daughter — to make sure that she received the best possible interventions available. We’re still championing her…  And life is good!

parent holding young daughter

About a year after her diagnosis, I felt supercharged. Wanting to help not only my daughter but other children with autism, I started and finished a Masters Degree in Autism Spectrum Disorders. Within a few years, I began to work as an Assistant Professor at UiT – The Arctic University of Tromsø and later still, as a Visiting Associate Research Scientist at Yale University.

Over the years, I tried desperately to figure out why my little girl has autism. We ran genetic tests and brain scans with no result. This was, in fact, a good thing because then you know there are no restrictions on learning processes except for the diagnosis itself. I may not be able to understand the why — but that’s OK. In some ways, I think it’s made me a better researcher. My focus now is on improving the lives of children with autism spectrum disorders. Specifically, I look at how technology can help build relationships between children with autism and the people around them.

About a year and a half ago, I started talking with Kim Arthur, a founding team member at PlayFish, a mobile gaming company bought by EA Sports. He then introduced me to Katrine Gulstad Pedersen, a special needs educator who was already manipulating apps to use with her students, and Stian Hansen, a software engineer who can build anything. When Kim, Katrine, Stian and I decided to found Superplus, it felt like a natural extension of my research.

Our collaboration means that the science can actually be put into practice — Superplus can be used by parents and special needs providers to help children with special needs cope with everyday life. That’s why I love my job. It makes a difference in the lives of regular families — just like mine.

father and daughter sitting on couch and looking at ipad

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When a Stranger at the Airport Reminded Me I'm Not on My Journey Alone

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Autism, sometimes you make things a little more difficult. Sometimes you make things downright hard.

An airplane trip isn’t simple, for example. It requires planning, as do vacations, etc.

I’m a true believer that autism is just a part of who I am. It’s what helps make me, well, me! But I must admit, during the hard moments, it’s hard. It’s hard to not be frustrated with you, autism, and the challenges that come with you.

Like when I don’t feel well and can’t explain what hurts or how it hurts. When I sit at the doctors’ office, looking helplessly, and saying, “It hurts, it hurts.” I don’t expect you to magically know the answer, but sometimes I wish you could read my mind. When I walk through airport security and am scared by the security machine and a pat-down can cause me to flinch and scream loudly. When I reach my limit and scream. When the whole airport turns in our direction… I wish it was easier sometimes.

But you know what? I’m reminded of how far I’ve come. I’m making progress each and every single day.  Not every day can be easy, but the good moments out-number the bad. I have a family and friends who love me, and believe in me, and therapists who believe in me and are there to tell me they are proud of me.

A moment not too long ago, after a long traveling day, aircraft trouble and missing our connecting flight home, even my best attempt at holding it together only lasted so long. I screamed and started to cry. Within a few moments, I was calm again. A mom, her son and her husband had been traveling with us all day, and were standing near us in line to rebook our flight when I screamed. LOUDLY.

My mom asked their son if I scared him, to which I said I was sorry and didn’t mean to scare him. His mom looked at my mom and me and said it was okay, not to worry, her friend’s daughter had autism. Then — and this moment will stay with me forever — she told me she thought I was doing a great job, and I could tell she meant it.

So often we are judged, and people stare or comment, but this other mom didn’t do that. I had just screamed so loudly that a large section of the airport could hear me, and she told me I was doing a good job. Sometimes a good job is simply trying your hardest and giving it all you’ve got. I’m always reminded that I’m not on this journey alone. Thank you, autism, for continuing to teach me so much about life.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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I Told My Partner I’m a Package Deal. He Responded With 3 Perfect Words.

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To the man who loves me (and my brother with autism):

I fell in love with you when I was 14. No, our lives haven’t been the typical fairytale romance story of many high school sweethearts. We’ve fallen out of touch, many times, and reconnected many times, only to fall out of touch again. But when I found you again at 19, this time, I knew you were here to stay.

At 19, we weren’t thinking about what our future would hold. We stayed up late, went to concerts, went out for ice cream in the summer and cheered for the Dawgs at Georgia football games. I was in love with you, you were in love with me, and I loved being young and in love. In the back of my mind, I always knew my brother with autism would become my responsibility someday, but it was a far-off concern, one that wasn’t tangible, one that wouldn’t happen for many years, and it certainly was not a concern that 19-year-old me needed to talk about with 19-year-old you.

author with boyfriend

Then 23 happened, and because of life’s ever-changing and unexpected circumstances, the responsibility started to became real. My parents started talking to me about finances, about Josh living with me in adulthood, about possibly buying property and hiring staff. I had to sit in on the “tough conversations.” I learned more about what was going to happen when my parents died than any 23-year-old should ever have to know. I was constantly thinking about my future, and where and how Joshua could (and would have to) fit in. My parents began the emotional conversations with me about how to make this “burden” just a little bit easier. I was terrified.

I told you all these things: my fears, my guilt, my hopes and my dreams. I told you that I loved my brother, but sometimes I felt trapped into a lifetime of caring for him. Some days, I felt incredible guilt for not wanting the responsibility. But most days, I felt incredible joy knowing that my brother and I shared such an incredible bond through intense, unconditional love; a bond that I knew was unbreakable. Many times, as I thought about all of these things, I cried in your arms.

“What if I can’t do it?” I asked you, “What if I can’t do all of these things I need to do? What if I fail him?”

You gently cupped my face in your hands. “It will all be okay,” you said, “I promise.”

You sat with me through that first planning meeting, and you listened to the future goals for what mine, and Joshua’s, life would look like. You learned about this part of my life, the “autism sibling” part of my life, quickly and unexpectedly, in a way that I felt was less than ideal. Sure, you had seen it before, but not like this. Not this logistical side of it, not this legal side of it, not this very, very, vulnerable side of it. I cried in your arms some more.

“Does this scare you?” I asked. “Does it make you not want to be with me anymore? What do you think about all of this?”

“I think it’s something that I need to learn,” you said, “I don’t know much about it. But you and I will, we will learn it together.” I cried in your arms again, this time, tears of relief.

A few weeks later it came up again. We talked about what life would look like, and again I told you.

“You know,” I said, “I’m a package deal. I come with Josh, and that’s never going to change,” I said. “You get me, you get Josh.”

Package deal,” you said. “Period.”

author with brother

You’ve taken this on with me, this life of unique challenges, heartaches, joys, and triumphs. You could have said no; some people would have. Instead, you spend time with Josh, you talk with him, you ask him to come with us to the grocery store and sometimes to the movies.

You come with me to take him bowling with his friends. You tease him about his love of diet Snapple and easy-cheese. You buy him movies for Christmas, without me saying a word, because you’ve noticed him watching them over, and over, and over again. Sometimes, you even surprise him with diet Snapple, just because you know how much he loves it.

It doesn’t scare you that when I think about houses. I always talk to you about which part Josh will live in. It doesn’t make you mad that he will live with us someday. It doesn’t make you mad that such a huge part of me is, and always will be, dedicated to him, forever. It doesn’t make you mad because you love all the parts of me, including the incredibly vulnerable parts, the parts that others might have walked away from.

You could have said no. You could have walked away. But you didn’t. You stepped into my “autism sibling” world, and you never looked back.

So, to the man who loves me (and Joshua), thank you.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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12 Things Not to Say to Parents of Kids With Autism

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When you say, “My son/daughter has autism” people don’t know how to respond. Most folks know not to say, “Woo hoo!” and high-five me, so instead they fumble for their speech, they turn their gaze away, they make horrible social blunders, and then quickly try to escape an uncomfortable situation.

We get it. We know you are at a loss for words. We know you don’t know what the right response is. We know you feel awkward, unsure and really, really wish you had never stared rudely and commented on our child’s behavior, but once the cat is out of the bag, you can’t pretend you didn’t let it out. And neither can we.

So during this month of Autism Awareness, I thought I could help those awkward, at-a-loss-for-words people out as much as I could. Seeing as how every situation is different and every child with autism is different, I might not be able to tell you exactly what to say, but, I can give you some helpful hints on what not to say.

Boy sitting in a floral-print chair wearing a blue t-shirt

1. “But he looks so… normal?!”

Um, OK… thanks? I’m not exactly sure what “normal” looks like, but, I think my kid is gorgeous.

2. “Are you sure he’s autistic?”

Yes, I’m sure. I realize if he isn’t spinning, flapping, asking to watch Judge Wapner or yelling, “Bazinga,” he may not seem autistic to you, but, the 200 specialists we have seen, trying to reassure ourselves of that very question, confirmed that he is indeed autistic.

3. What do you think caused it?

We don’t know. We wonder, we question and we agonize over everything we did, everything we ate, and every place we went while pregnant. We spend countless hours blaming ourselves, the environment, genetics, etc., then we finally realized, what caused our child’s autism isn’t nearly as important as what we are doing to support him. We want you to realize that, too.

4. “Ohhhhh… what can he do?” 

I said that he has autism, not that he’s a circus monkey. We realize that there are misconceptions that all people with autism have some sort of exceptional ability, and although some do, some do not. So when you ask a mother this, not only does it reinforce that her child is “different” in the neurotypical world, it makes her feel like her child is “different” in the autistic world, too, so just don’t.

5. “Maybe if you just provided him with some discipline.”

Duck. If you say this, then either wear a face mask or duck very, very quickly.

Autism is not caused by poor parenting or a lack of discipline and what you are witnessing is not a temper tantrum. What may look like an “I’m not getting my way” tantrum is a sensory meltdown by a child who cannot tell his mother what is hurting him, how he feels or how to help him. This inability to help our child already feels like a punch in the gut; don’t add to our pain with your ignorance and judgments.

Boy in t-shirt and shorts standing near beach shore

6. “I try to talk to him, but, he always ignores me. Maybe you should get his hearing checked.”

We have. He is not deaf. He hears you. He sees you. He knows you are there. Just like he knows when you don’t see him, when you don’t hear him and when you give up on him. Just because he does not speak to you, does not mean he isn’t trying to communicate with you.

7. “Maybe he just likes to be alone.”

He may “prefer” to be alone, but, that doesn’t mean he “likes” to be alone. Being alone is easier than trying to understand facial expressions, body language and conversations that are difficult to understand. Watching them be alone hurts, having people assume they “like” being alone, and letting them be alone, hurts even more.

8. “He’s not that bad.”

I didn’t say he was bad. I didn’t say he was broken. I didn’t say how he sees the world is wrong. I said he has autism. “Different” is not “bad.”

9. “He’ll eat when he’s hungry.” 

No. He. Won’t. (Duck again.) And let me ask you, would you test your child with this theory? Would you wait him or her out for days and days to see how hungry he gets before he will eat what is put in front of him and not the food his sensory system tells him he needs?

10. “You are so… [insert amazing, brave, strong, loving, etc. here].”

No, I’m not, but, he is.

11. “I’m sorry.”

Don’t be, I’m not (most days).

12. “Will he always be like that?” 

Will he always have autism? Yes. Will autism always impact his life in some way? Yes. Will he always see the world a little bit differently? Yes. Will he continue to grow, live, love and find joy while teaching me to see his world? Yes. And that’s why we don’t want you to be sorry.

Saying The A Word is hard. Responding to The A Word is hard. Educating yourself about The A Word is not. Thanks for taking the time to do so.

A longer version of this post appeared on The AWEnesty of Autism.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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I Know Why 2 Different Groups of Kids Bullied My Son Yesterday

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Yesterday was perfect. I took him to the zoo. We didn’t have one meltdown. He is learning to feed himself. He only bolted while playing on the playground, so all things considered, totally manageable.

He tried to make friends. He interacted with his surroundings. He played appropriately at the sandbox in the dinosaur exhibit. It couldn’t have been more perfect. More beautiful.

We’ve had so few of these issues over the past few years that sometimes I forget, or rather I don’t think about in clear, vibrant ways, that he is disabled.

Yeah, that word so many people don’t like: “disabled.” “Lacking in an ability.” And let me be very clear, My Boy is the shiz. But there are things he can’t do. And I know it. But I also forget quite often what it’s like to stand him next to a group of children and “compare.” And yeah, I think it’s an important thing to do. I need a plan for him. I need to know how far we have come. How far we have left to go. I need to know goals and what works and what doesn’t. I need to see so I know.

I saw him running and flapping and doing his “scarecrow dance” onto the playground shouting, “My friends are all here” and I watched to see if his simple joy was enough to make friends.

boy on slide at playground

I saw him playing along with the 3-years-olds, mostly able to follow their lead. And I watched them gang up to hit and kick him.

Was it his size? That he was so much bigger? Was it that they couldn’t understand his speech or his behaviors?

I saw. But I didn’t know what it was that I saw. And then I saw him leave the toddlers, whose games and dances he understood. I saw him approach the bigger kids his own age.

And I saw them decide to take him out, too. As if his very existence was billboarding him as an outsider. As bully-fodder. As if they could smell him.

Or see a flashing light over his head declaring, “I am different. And vulnerable. Come hurt me.”

And their taunting punches and kicks that landed softly, as if egging him on, were met with his blank, confused, thoughtful stare. He was present in that confusing, awful moment. And then when the ring leader decided to go after him for real, with me running full blast toward them, I saw My Boy punch that Kid-Bully in the jaw.

And when Kid-Bully stood stunned, I saw My Boy side kick him ninja-style in the hip. And down Kid-Bully went. And My Boy stared at him. A blank, thoughtful stare. Hurt. And confused.

And later in the car I answered My Boy’s questions as best I could. No. You are not allowed to hit… Well, Hit first… Yes, if someone hurts you, it is okay to fight back… Yes, you should come get Momma if you can… No, you are not a villain… I know it’s confusing… I’m proud of you for defending yourself.

And I’m heartbroken you had to. Why? Why is a boy who hasn’t mastered potty training and doesn’t know his ABCs having to learn how and when to defend himself? Why!

Why is My Boy, who just wanted to make friends, unable to do so in a setting that should be so natural? Why do I have to hover just to protect him?

I know why. And it has nothing to do with “Autism Awareness.” And it has nothing to do with “Autism Acceptance.” It has nothing to do with special needs or childhood independence. It has to do with them.

The ones standing in line for lunch at the zoo who think it’s okay to roll their eyes at the awkward teen girl who invaded their perceived “space” as she reached past them to grab a pudding.

It has to do with them. The parents standing in line for the zoo train wearing their babies. When their 3-year-old points at my 5.5-year-old and says, “He’s in a baby seat!” And I reply “No, it’s just a stroller.”

And they usher their kid around the corner without correction or apology or even a glance to let me know they didn’t know what to say. Because I know what you probably told him. Not considering the needs of others who will need strollers throughout childhood or adulthood, you told him that he didn’t need to ride in a “baby seat” today. Because trying to foster independence you, unwittingly, I presume, taught him that children with other needs are babies.

It has to do with them. The parents who let their kids mock and bully a child who acts differently and speaks differently. Because “they’ll work it out on their own” is such a solid parenting plan. And you couldn’t care less who gets hurt.

Until your child gets punched and side-kicked by the boy with autism. And then suddenly, in the flurry of emotions I can’t even name and the flailing scenes moving so fast my mind can’t keep up with my eyes, it isn’t about you; it’s about us.

And it’s about the fact that I am us and you are them.

It’s about me realizing that raising your level of awareness isn’t enough. Because there will never be enough autism awareness to make you move over in line so the awkward teenager all alone can grab her pudding without being visibly mocked by adults. There will never be enough autism awareness to teach you that a simple “Would you like to sit with us?” could have taught others to accept and not reject the teen who was different from yours.

There will never be enough autism awareness to teach you that telling your child “a kid in a stroller isn’t a baby, he’s just a kid” would have made all the difference to the mother pushing the stroller. Or to the kid in the stroller who understands more than you think, because his stroller doesn’t inhibit his hearing.

“Autism Awareness” can’t be “Autism Acceptance” until you are willing to be a kind human. Until you are willing to practice “Human Awareness” and someday, if you possibly can, “Human Acceptance.” Even if it’s just to help another mom have less of a hard day. Even if it’s just so you don’t underestimate the strength and the fortitude of that kid with delays as he takes out your son on the playground. Even if it’s just to stop making everything them versus us and you versus me.

Can we start there? Please? So sometime, somewhere, someday the perfect and beautiful day at the zoo will be less of a hard day. For all of us.

A longer version of this post originally appeared on Letters From a Spectrum Mom.

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