To the Person on the Autism Spectrum Trying to Speak on My Behalf

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As someone who is part of the autism community, you have probably already heard the common phrase, “If you’ve met one person with autism, you’ve met one person with autism.” It means that no two people on the spectrum (or off the spectrum!) are exactly the same. It means that another person will not always feel the same way you do about certain situations. It means that each person has a different opinion.

And yet, I am constantly hearing — whether it is in a group or a forum or in person — the word “we” to describe personal experiences with autism. I have come across so many statements:

“We as autistics do not like to be called ‘people with autism.’”

“We feel as though our autism is a part of who we are.”

“We don’t want any therapy for our autistic traits.”

“We hate that autism organization.”

While these statements may hold true for some, they do not hold true for all. And to use the word “we” implies that they do. The use of the word “we” may confuse those who are not familiar with autism, or the differences each person has.

I am tired of coming up right after you and having to correct the statement that all people on the autism spectrum feel that way. I have grown tired of trying to explain to others that I might not feel the same way. I am tired of explaining to people that I really don’t care whether I “have autism” or “am autistic.” Maybe you don’t want any therapies for the social deficits, but I really would like to be able to understand a full conversation with someone without misinterpreting what they say. And perhaps you hate that autism organization. But I don’t. I may dislike certain aspects, but I don’t hate people who are trying to help me. And while I feel that my autism is a part of who I am, that does not mean everyone else does.

I constantly use the disclaimer: I can’t speak for everyone. I can only speak for myself.

I ask you, from one person on the autism spectrum to another, to please stop speaking on my behalf. By all means, please feel free to advocate for yourself. But instead of using the word “we,” just use the word “I.”

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To the People Trying to Change Me After My Autism Diagnosis

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You’ve known me for a very long time. However, you have only learned recently that I am autistic. I understand this diagnosis isn’t easy for any of you to accept or understand yourselves. But do you ever wonder how easy it is for me to accept and understand myself in a world where everyone is expecting me to be someone I’m not?

Over the past 10 years, I’ve been accepted, quirks and all. You’ve seen my socially awkward side, not really talking much or trying to avoid going to a group outing altogether. You’ve seen my ability to sit down and solve problems quickly, my ability to work and just keep going like a machine, and even do a lot of extra work (often on behalf of you) without thinking twice about it. You’ve seen my lows, you’ve seen me cry or overreact to something that appears to be trivial to you. You’ve seen my extreme highs where I’m playful and make people laugh. You’ve accepted every single one of these things over the past few years as who I am and I was allowed to be that way.

What you didn’t see, however, was how tired I used to get after just a few hours of having to socialize with you. How much effort goes in to bringing myself to stand up, walk across the room and start a conversation with someone I don’t particularly have anything in common with — a conversation that has no purpose other than to say hi — and then not be able to think of anything else to say so I just feel awkward until one of us walks away. You didn’t see how upset I got after things got awkward. You don’t feel the stomach-turning pain when I have to prolong eye contact with someone so I don’t make them feel uncomfortable or as though I’m being rude. You don’t see how I notice every single detail in everything I see, and how much my brain has to process just moving into one area.

For example, when you look out to the car park, you see parked cars and the smoking shelter, right? Here’s what I see: black tarmac, white lines, red Audi, black BMW, gold Subaru, white Fiesta (and so on), every single letter on every license plate on each car (I have rhymes in my head to memorize all of them), I see a grey curved structure with misty Perspex “windows” which has two red litter bins/ash trays on either side of it, people standing around smoking/vaping, a big green hill with benches and lots of rabbits and small infant trees with different-colored leaves all over them, and a faded gravel path leading to a big circular area at the side of the building with the company’s logo fading away on it. I like this area — it’s my favorite area because I can vape there and be alone processing everything that’s going on around me. It’s my safe place.

Should I continue? I’m not actually done — that’s just what I take in on a five-minute vape break.

I see and hear so much more than you can imagine. You must think having super-vision and super-hearing is awesome right? Think again. Do you think it’s easy taking all this in for 24 hours a day, seven days a week? It’s not something that comes and goes. My brain is processing to this level of detail all the time.

I actually started to feel very ill as a result of my head working this way, as I didn’t understand myself. So, I saw a specialist, underwent some tests, and just less than six months ago, I was diagnosed with autism.

Since my diagnosis, I haven’t changed or become someone different. I just have a reason for the way I feel and react a lot of the time, and I find comfort in knowing I’m different.

I do find it saddening, however, how everyone else appears to be trying to change me “back.”

“Right, we need to get you up and talking to people, let’s get you over this social thing.”

Here’s news for you: I won’t get over it. I have no issues socializing when I need or have to. If there is absolutely no purpose to having a conversation with someone, I won’t have it. I’m at work to work, and if I need to talk to someone about work, or if I’m genuinely interested in starting a conversation, I will do so. But I can’t make unnecessary conversation to try and cure something which can’t be cured.

“You’re taking it too personally, you’re overreacting.”

Take a walk in my shoes and come back and say the same thing to me. Go on, try it.

“Why are you so clingy to that person and not balancing your attention across everyone else?”

Maybe because I have a common interest with that person, or because they’ve asked me to help or support them for a while. Maybe I’ve known them for a long time and have history with them. I’m sorry I don’t have enough love to share across the whole world. But yes, I get attached to certain people and I can safely say there are three people outside of my immediate family who I am attached to, consider my friends and trust with my life.

“You’re not approachable. You zone out all the time.”

That’s funny, because you still approach me and I respond accordingly, help you, and give you whatever you need. I zone out when I’m concentrating — when I concentrate on something it has my full attention. Which is kinda the reason my attention to detail is so high and why any favors I do for you are completed to a high standard and in good time.

“You’re too direct.”

I’m sorry I can be monotone at times or sharp. I’m the same at home. I’ve been working for 20-odd years to try and improve that. I’m pretty sure I’m not the only one out there like this, though.

There are a lot more examples I could give, but the one question I have is why has it taken a diagnosis for you to realize you don’t like who I am or how I am, and why do you feel as though you are “helping” me by trying to change me to become how “everyone else” behaves? You’ve loved me and accepted me up to now, you didn’t want to change me before, you didn’t even notice me sitting in my corner working away quite happily and getting involved when it was required and nothing more. But now that you know I have a social disorder, all of a sudden everyone feels insulted that I tell them I don’t need their “help” to change?

When did it become so wrong to be unique? I really wish you could accept me today the same way you accepted me 12 months ago.

I can’t be cured.

I am who I am.

I don’t need help.

I actually haven’t changed.

I’m different, and not less.

Carrie

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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The 7-Year-Old Sous Chef Who Changed How I See the World

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As a private chef, my toughest critics and biggest helpers have always been the babes of the billionaires I feed. I’ve been lucky to interact with some unique and special children; this is the story of one in particular who changed the way I see the world.

My newest coworker is 7 years old, autistic, epileptic and was born with tubular sclerosis. Usually he shows up to work around 3:30 after school, begging for a cup of Cheetos and a giant orange juice. 

Today, he’s upstairs sleeping. His parents are coming in from a late flight tonight, so my culinary focus has been the best damn bowl of SpongeBob Mac and Cheese he’s ever eaten. On most days he joins me in the kitchen, flapping with excitement, over-mixing batter, cleaning up the counters, and other jobs I give him.  

“Tuna smells like Christmas trees,” and “the sound that kale makes is annoying,” according to the Kitchen Assistant. He’s peeled carrots and clementines; he prefers all things orange. He made his first glass of “Super Juice” and then proudly announced his handiwork throughout the house. He watched inquisitively as pulp spattered in one direction and fresh liquid dripped into the jar.

Watching how views the world inspires me to spin my thoughts in more colorful directions. I am teaching him to cook, and he is teaching me to sense.

He describes the world in texture and color. His mother’s room is “soft,” he’s displeased (like a proper Kitchen Manager) when I wear my hair down, he strongly dislikes the sound of sizzling seared meat. He knows I have a boy his age, and he inquires daily into my son’s wellbeing.

“Is your boy’s room soft?” (No, my boy’s room looks like a Lego bomb went off.)

“Does your boy like Master Shredder?” (No, he likes Raphael because he reminds him of his Uncle Wyatt.)

“Will your boy be my best friend?” (I hope one day the two of you can meet.)  

Some days he slogs home in tears. It was a “Thumbs Down” day at school, and his excitement got the best of him. The last thing he wants to do is disappoint. He wants the whole world to flap with him, to marvel at the details of the day, and when his joy overtakes him, he’s admonished. “Thumbs Up” days are great; it’s announced throughout the house, and he wraps his arms around me a time with a prideful smile. Thumbs Up or Thumbs Down, my sous chef still shows at the kitchen island, ready for service.  

He paints the world in color, feeling, flapping joy, texture and crunch. He seeks my company and bridges the gaps between pity and overcoming the odds. I’ve had many coworkers in this unique career. I’ve mashed acorn squash for toddling 2-year-olds, danced in the kitchen to Hank Williams with three long-haired preschoolers; I’ve catered spa days for overprivileged and misguided teens who still gripped hold of my heart despite their ability to tear up a clean kitchen and pick apart my every creation all while staring at a cell phone; but this little guy takes the cake. He’s stirred feelings of hope and wonder in a world that wilts amongst the status quo.

His spark is contagious. Every day he shows up to work, looking for love and acceptance; and lucky for me, we’re both finding it in the kitchen.

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Little Girl Makes Sweet Request of Santa for Her Sister With Autism

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One little girl had a sweet request for Santa this year, on behalf of her sister who has autism.

Lyndsy Harmony, from Delaware, Ohio, posted a photo on the Autism Speaks Facebook page of a letter her 8-year-old niece Kasey wrote to Santa. In it, Kasey asks Santa for an “Elf on the Shelf” with autism for her 9-year-old sister Chloe.

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Courtesy of Lyndsy Harmony

The letter reads:

Dear Santa,

I have a sister named Chloe who has autism. She likes to play with our elf. Could you send an elf with autism just for Chloe?

From Kasey

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Chloe and her elf, courtesy of Leah Beswick

“When I first saw the letter Kasey wrote, my heart was full,” Leah Beswick, Kasey and Chloe’s mother, told The Mighty via Facebook message. “It made me so proud that Kasey knew her sister didn’t understand the ‘rules’ of the Elf on the Shelf, and took it upon herself to make sure Chloe had an Elf that would fit her special needs.”

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Chloe and Kasey, courtesy of Leah Beswick

“By sharing the letter I wanted people to see that even the smallest act of kindness can affect someone in the biggest way,” Beswick told The Mighty. “Chloe’s siblings are her biggest support. They don’t look at her as different or less than anything. To them, she is just Chloe. They challenge her, understand her and love her unconditionally.”

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Chloe and her siblings: Kasey, Kaelyn and Patrick. Courtesy of Leah Beswick.
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‘Mama, Does My Autism Make Me Bad?’

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As a special needs mother, sometimes I become stressed or find myself at a loss for words. Sometimes my best outlet for stress management is through writing short stories (many non-fiction). This is my reality. Sometimes it’s difficult to share our stories; sometimes it’s hard to find the words.  

was at a loss for words yet again recently, when my child approached me with a particularly difficult question. I was awestruck at how much he’d taken in from his surroundings and others — perhaps it came with his therapy or maybe I just didn’t understand how intuitive he really is. 

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What I do know was that it was a question I wasn’t ready for at the time. This time, I approached it quite differently. We formed a creative short story, one we wrote together. The goal was to help him feel that we could approach our journey together optimistically and not to make him doubt himself when it came to others’ reactions to his meltdowns.  

We wrote the following together:

“Mama, Does My Autism Make Me Bad?”

Every morning as Sage got ready for school, he asked his mama an important question to help him get through his day.

“Mama, does my autism make me bad?”

His mama, without skipping a beat, would reply, “Meltdown today, meltdown tomorrow, this is what we know. Sensory overloads, they come and they go. I will love you no matter what happens. I want you to know. This is our high and this is our low.”  

Sage would smile as he went about his day. He would come home, and this is what he would say: ”Mama, I got time out. I got mad. I didn’t get recess or gym. I kicked…I screamed…I cried. I wanted to be good, but my teacher said I wasn’t. I tried, Mama, I really tried. Mama, does my autism make me bad?”

His mama just looked at Sage, took a deep breathe, then said, “Meltdown today, meltdown tomorrow, this is what we know. Sensory overloads, they come and they go. I will love you no matter what happens. I want you to know. This is our high and this is our low.”  

It was bath time. Sage loved his bath time, but he didn’t like to wash his hair. He didn’t like the water over his head. He kicked and he screamed like he was in pain. It was sensory overload, and there was nothing to gain.  

Finally, it was over and the aftermath of the meltdown somehow lingered in the air.

Sage had tears in his eyes as he looked at his mama combing his hair. “I get in trouble. People stare. I don’t know why…but I do care. I wish I was different. I wish I wasn’t bad. I wish school made me happy, but instead it makes me kind of sad. Mama, does my autism make me bad?”

Sage’s mama just looked at her son. “This is our journey,” she said. “We are not alone. Some children, like you, have autism too. You can’t see autism when you look at someone, so you can’t see who. It’s OK to be who you are…it’s OK to be different. Meltdown today, meltdown tomorrow, this is what we know. Sensory overloads, they come and they go. I will love you no matter what happens.  I want you to know. This is our high and this is our low.”  

Sage sat on his bed shortly before bedtime looking through this window. “Some people say I’m naughty, some say I’m spoiled, others say I’m bad. I don’t mean to get in trouble, I want to be good. I want to go to recess. I want to wash my hair. I wish I didn’t hear what they said about me. I wish I didn’t care, but I do, Mama. I do. Mama, does my autism make me bad?”

Sage’s mama sat next to his bed without taking her eyes off him, “Autism is not something that just goes away. It’s something makes you see and react to the world differently. It’s something we cannot control. Don’t worry about others; some just don’t understand. Just know, I will always be there to help guide you and hold your hand. Meltdown today, meltdown tomorrow, this is what we know. Sensory overloads, they come and they go. I will love you no matter what happens. I want you to know. This is our high and this is our low.”  

Sage’s mama tucked him in bed and shut out the light. She stood at the door gazed at him through a small crack of light. Through the darkness, she saw the glimmer of a smile.

“Now close your eyes, rest your head. Autism does not make you bad; it makes you special instead.”

It is now his favorite bedtime story.

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The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to co[email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To the Autism Community, From One of Your Newest Members

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I’d like to introduce myself. My name is Lamar Hardwick. I am 37 years old. I am a husband, a father of three beautiful boys and a pastor of a church in Lagrange, Georgia.

Exactly one year ago I officially joined your community. Growing up I experienced many social challenges. I grew up in a military family so we moved around frequently while my father was fulfilling his duty to serve our country. Unfortunately for me, this often meant that some of my more obvious struggles went unnoticed. I grew up in an era and an environment when Asperger’s syndrome and autism wasn’t as recognizable, especially when you moved around quite a bit like my family did.

I am not complaining. I had great parents, teachers and siblings. I lived a fairly decent life, and I was able to form a few meaningful relationships, but I have always been autistic. I was born this way, and it wasn’t until a year ago that I learned the source of my life long struggle. A year ago I joined your community and as a result I believed I was joining your cause.

The past year has been both liberating and traumatic for me from one second to the next. It has been liberating because I finally received answers. In the last year I have poured my heart and soul into learning more about autism and learning more about myself. Social anxiety is something I have always struggled with and I am frightened at the idea of having to meet new people, so you can only imagine the angst of having to meet myself for the first time in 37 years. It is absolutely scary, but I love the process of finding myself and finding my voice in the autism community.

On the other side of the equation, my entry into the autism community has presented moments of trauma that are extremely difficult to recover from. The autism community is as vast as the autism spectrum itself. Navigating this community of common interests has proved to be something analogous to a minefield, where one must carefully consider each step they take for fear of being destroyed by members of the very community they seek approval and acceptance from.

I believe ours is a community riddled with conflict. We fight about terms, language and the diagnosis itself. Is Asperger’s syndrome autism? Can parents call themselves “autism parents?” Is it OK for adults to advocate for themselves? Which websites, blogs and journalism outlets support the autism community? Should we cure autism? Is autism a “gift?” What about functioning labels? Who determines who authenticates the validity of one’s personal experience with autism?

I will openly admit that I do not have the answer to these questions. I will admit that I do not understand all of the nuances of navigating these difficult and very serious discussions about autism. What I can tell you is that I am a part of your community. I want so desperately to be a part of your cause, but I believe ours is a community that has the potential to unintentionally eat our own young (and old, for that matter). In many ways our greatest challenge might be the inability to simply get along within our own community.

As a person who communicates for a living, I understand two things extremely well. I have invested countless hours of time in developing both the experience and education to understand and apply the power of the two most important elements of successfully navigating our shared human experience. Language and storytelling are how we develop the courage and conviction to build community and collectively overcome our common challenges.

What that means is that while we carry a myriad of experiences of life on the autism spectrum, our community must continue to challenge itself to make space for the communication of those narratives — without the need to compete with or critique the stories of the members of our beloved community.

I am new here, and while I am still learning how to find my place in our community, I must be completely honest when I say there are days when I want to quit. There are days when I believe the discussion within the autism community becomes so toxic that it temporarily makes me regret my decision to be diagnosed and to join the cause. And yet I find the courage and resolve to stay committed to the community and committed to the cause, because after all, we are family. Ours is a struggle that can and should bring us together, and I am praying with childlike naivety that our day will come — when we unite instead of divide so that together we can challenge the world to change for the better.

Dear autism community: I’m new here and I want to be here, but I’m learning that in order for me to survive I have to commit myself to cherishing your narrative as much as I cherish my own. I have to learn that my narrative is not necessarily normative, and I am inviting you to do the same. I will commit myself to advocating for adults with autism because our voice is needed and important. My advocacy is not an attempt to compare experiences; rather, it is an attempt to create environments that make space for our future autistic adults to have a voice. I will also commit to being sensitive about the language I use to describe my story. I am inviting you to do the same for the sake of our community.

To the parents of autistic children: I don’t claim to speak for you or your child. I recognize that I can advocate because I have the capacity to do so. It does not make me more special or gifted than your child who might not be able to speak for themselves. Neither does it give me the right to assume that your heart’s desire for your child to be relieved of their struggle by finding a cure is wrong or insulting to all autistic people. Your narrative is yours, and it is special and unique to your experience and I respect it, appreciate it and need to hear it to enhance my life. I am asking you to do the same.

To autistic adults: Keep sharing your narrative, but respect the narratives of others. Your story is important, so tell it to whoever will listen. But in the process, learn to listen and appreciate the stories of others. I believe ours is an assignment to leave a legacy of tolerance, acceptance and change, and I believe we can accomplish our goals without disenfranchising the generation we have a responsibility to empower for the future of our cause.

Dear autism community: I believe you are complicated, occasionally confrontational and mostly controversial, and although I’m new here and I sometimes I want to quit, please know that I am committed. Through the good, the bad and the ugly, I believe we can be a real community, we can be committed to each other and we can change the world. Let’s do it together. Let’s make a difference.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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