‘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 [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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My Letter to an Autistic Adult

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*I decided to write this letter after reading a comment written by a self-identified autistic adult advocate. According to the comment that she left on the forum, her mission is to educate, but lately she feels like giving up because so many people attack her words rather than taking her message to heart. I want to her to know that, as a parent of an autistic child, I hear her and I appreciate her words and insight. Now, more than ever, the autistic perspective is needed.

Dear Autistic Adult*,

We have never met before in person, but I want to thank you.

First, allow me to introduce myself.

I am a mom of an amazing seven-year-old named Ben. I’ve changed his name to protect his right to privacy.

Ben is autistic. I am not.

When Ben was first received his autism diagnosis, I became shamefully aware of how little I really understood about autism. I was a novice in the world of disability, but I quickly dove into researching anything I could find on the subject. I quickly realized that there is a lot of conflicting information out there. For a short while, I let the so-called experts scare me with their doom and gloom prognosis. During that time, I allowed myself to give in to worry and doubts about my child’s future.

Somewhere early into my journey, I discovered you. I came across your blog. I read your comment in an autism forum. I met you through a Facebook page devoted to autism acceptance.

Even though it was hard to hear, I listened to your words.

I realized that, even if you and my son come from different points on the autism spectrum, you understand his neurology in a way that I never can or will. You have lived his journey and are speaking from a place of experience. You are the true expert — more than any doctor with a PhD ever can be.

I listened and realized how much I still needed to learn.

I realized my perspective was off.

I realized I was busy feeling sorry for myself, but it wasn’t about me at all.

This was about him.

I listened and began seeing my son’s autism in a brand new light.

You taught me that autism is not a disease and therefore does not need a cure.

You taught me to steer clear of those promising cures and to be wary of organizations without any autistic representation on their governing boards. You taught me to love the child I have rather than mourning the loss of the child I had expected him to be. Read Jim Sinclair’s eloquent post called “Don’t Mourn for Us” here.

You taught me that his autism permeates every aspect of who he is. It is as much a part of him as his gender or his eye color. You cannot separate autism from the person — nor would you want to, because even though autism brings its challenges, it also brings amazing strengths. And all of us have challenges, whether we are autistic or not.

You taught me about ableism and inspiration porn and the dangers of therapies that seek to make a child indistinguishable from his peers. I learned about the insidious nature of quiet hands.

You taught me that no one “grows out” of their autism and the price the body pays when it tries to “pass” as normal for too long.

You taught… and I learned.

I learned about identity-first language versus person-first language and why most prefer the term “autistic” to “person with autism.” I changed the way I used those words and explained my reasons to my colleagues when they asked why.

I’ve learned to ask for consent when writing about my son’s experiences. I’ve realized they are his stories to tell more so than my own. My son is not an object to serve as a teachable moment, an inspiration or something to pity. He is a child who will someday grow into an adult. I have to respect his privacy first and foremost.

I believe that, for too long, parents like me have controlled the narrative about autism, and the autistic perspective was missing entirely. I hope this continues to change.

I know it hasn’t been easy for you to share your perspective. I know that parents have said harsh and hurtful things to you. I’ve seen so many online forums become battlegrounds rather than safe spaces. I know it must be tiring to seek to educate — to explain the same message over and over — as you meet new parents who don’t “get it,” as I once didn’t. Sadly, I do not see an end to the great divide in our community any time soon.

But I’m here to tell you that it is worth it.

Because, by educating me, you are making me a better parent for my child.

You are making me a better teacher for the children I educate.

You are making me a better writer, advocate, and human.

There is so much work to do.

Please don’t give up just because the divide seems insurmountable.

Please know there are other parents like me who are quietly listening and learning.

You have the power to change perspective.

Because, though I may not share your neurology, I share your mission.

I share your desire for respect and equal access to education, employment and opportunity.

No exceptions.

Respectfully Yours,

Ben’s Mom

Follow this journey on Changed For Good.

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To the Students Who Stood Up to Our Classmate About Using the R-Word

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Boy With Autism and Mall Santa Find Clever Way to Avoid Camera Flashes

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Zaivier Hensley doesn’t like to stare directly at cameras because of the flashing lights.

So when the 5-year-old, who has autism, met Santa at the Fox Run Mall in Newington, New Hampshire, on Dec. 6, the pair came up with a clever way to take a photo:

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This Santa was part of Fox Run’s “Caring Santa” program, where a sensory-friendly environment is offered to any child who prefers one.

“For once we were not the people being stared at or whispered about. We weren’t being accused of ‘disrupting’ anyone else’s experience or told we should just go home and forget about it by the ever-present people with unwanted and less-than-helpful advice,” Zaivier’s mom, Catherine O’Meara, told The Mighty in an email. “We got to be ourselves in a place where no one batted an eyelash when we had to walk exactly seven laps around the village before we could go see Santa. It was OK that Zaivier was vocally stimming, jumping and spinning to calm himself while we waited for his turn. And it was OK that he needed extra time to warm up before he gained the courage to even come within arms length of this man.”

“It’s a little slice of the one holiday experience we ever had where the two of us were just enjoying a nice tradition,” O’Meara added. “We didn’t have to qualify why we went, or why it was important. We just had to enjoy ourselves.”

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12 Ways Denial Is (Was) a Special Needs Parent’s BFF

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I met Denial 10 years ago. When she first came into my life, I had no idea the impact she would have on me. Denial was the friend I clung to the most. The friend I counted on to get me through some tough days. The friend who was always there when I needed her… and even some days when I didn’t. Denial was the friend who plopped down at my kitchen table, slept off her wine buzz in my spare bedroom and took up residence inside my head. And she never even brought wine. Pfft.

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Denial also helped me block out things in my past that were tough to look back on. Things I choose not to remember because, well, Denial suggested I shouldn’t focus on “those” moments. And I listened to her. Denial is a tough cookie.

For many of us who had “The A Word” sort of whispered across an expert’s desk, Denial is a friend we spent at least a little time with, sometimes before we heard the word and sometimes even after. Denial is the friend who stays too long, talks too much, spouts her opinions way too often and is a horrible influence on you. In short, Denial is the friend your mother always warned you about. And just like when you ignored your mom’s advice on that “no good blankety-blank-blank boyfriend,” chances are, you ignored her about Denial too. And just like with your “no good” boyfriend, you eventually had to figure it out on your own, in your own time and in your own way… only this time without matching tattoos.

Denial is the friend who usually shows up right after Fear leaves. So, just when Fear closes the door and you finally think you’re alone, you’re reminded that you’re not. Fear and Denial are the friends you no longer really hang out with, but, you know they showed up in your life for a reason…. and a season… or two… or 10. And rather than beating yourself up for your poor friend choices (just like you do for that old boyfriend and that tattoo), you have to remember you chose them, just as much as they chose you. And that’s OK because you’ve since moved on, and thanks to them, your eyes and your heart are now open.

I’ve decided I can continue to beat myself up for running with the wrong crowd for so long, or I can laugh at the impact that crowd had on me and how much I’ve grown since then. Like with most things, I choose to laugh because laughter really is the best medicine, along with a good bottle of red wine that a real friend brings over when she stops to visit.

Here are 12 ways I know Denial showed up and stayed too long:

1. Back when my son Ryan’s sensory system was on such heightened alert, Denial told me when I was blow drying my hair, it wasn’t the sound of the hair dryer that caused Ryan to run around like a wild banshee screaming, it was because he was upset I was ignoring him and focusing on my latest hair style. Made perfect sense.

2. Denial also assured me Ryan’s lack of eye contact, especially when he looked out the corner of his eyes, was not because making eye contact was difficult for people with autism, it was because he was too busy looking at things much more interesting than his boring, old, nagging mom who constantly said, “Look at Mommy, Ryan.”

3. When Denial stopped by and I would tell her how sad I was that Ryan didn’t have friends, she assured me it wasn’t because Ryan struggled to make friends, it was because he hadn’t found any friends worth his effort. That was so much less painful to believe.

4. Denial also led me to believe when Ryan would spin and spin and spin under the ceiling light in our kitchen, it wasn’t because he was trying to self regulate, it was because he was spinning to see where the screws were on the light fixture so I could change the lightbulb (even if the lightbulb did not need changed).

5. The screaming, crying, meltdown at every single haircut was because Ryan wanted to keep his hair long and every time I walked him into the hair salon, I was betraying his wishes, Denial assured me. She poo-pooed my concern that the tears and the screams for help could be a sensory issue and perhaps a red flag for (whisper) The A Word. He does prefer his hair long, so Denial may have been onto something.

6. When Ryan would cry, “No Miss Joanie’s class, no, no, no!” every time we pulled into his Music for Children Class, it wasn’t because the banging and clanging of drums, tiny cymbals and maracas by a group of 2-year-olds was too overwhelming for him; Denial assured me that with Ryan’s musical gift, his protest was because he felt they should be singing “Ava Maria,” not “Twinkle, Twinkle Little Star.” (Seriously, “Twinkle, twinkle little star, how I wonder what you are” ? It’s a star, the lyrics just told us it as a star.)

7. Denial always made me feel better when I would watch Ryan pull away from other people’s hugs or touches because she assured me it wasn’t his dislike of touch that caused him to behave that way; it was because no one gave hugs like me. I’m a good, big hugger. Seriously, I am.

8. Every time we tried something new or different and Ryan would wig out, Denial told me it was not autism or the need for things to remain the “same.” It was because the old way worked, so why mess with what works?! If it ain’t broke, don’t fix it. 

9. Denial also said new clothes, new shoes, new coats, etc. weren’t due to Ryan’s extremely sensitive sensory system; it was just because Ryan knew how much I loved new clothes, new shoes, new coats, etc., and he wanted me to spend the money on myself. Such a sweet, sweet boy. (Dang, that Denial was goooooo-ooood).

10. The reason Ryan ate the same food, day in and day out, wasn’t because he had autism; it was so I would always know what to make him and I wouldn’t ever get it wrong. Because when you did get it wrong, well, suffice it to say, even Denial would leave the kitchen before the blow up began.

11. “Stop sweating it!” Denial would shout at me when I would obsess over Ryan’s scripting of videos, movies and games. “Maybe Ryan thinks ‘Thomas the Tank Engine’s Day’ is more exciting than his own so that’s why he talks like Sir Topham Hatt and not Ryan.” Thomas did have a fascinating life on the Island of Sodor, and well, we do not live on an island.

12. “He’s fine.” 

She did have that last one right, but, for all the wrong reasons. Denial told me Ryan was “fine” because that’s what I wanted to hear, but, believing in “fine” didn’t get Ryan the services he needed. Ryan was fine… in fact, he was perfect, but he still needed support — support that as his mother I couldn’t give him, and that was the toughest thing that Denial never said. Yeah, it was time for Denial to get out of my kitchen, out of my spare room, out of my head.

I admit, it was hard telling Denial to leave, and sometimes, I would let her pop in even though I knew I shouldn’t (just like that boyfriend). Heck, sometimes she still does, but, I had to let Denial go to make way for the friend I really needed more than anyone… Acceptance.

One day, Acceptance did show up, and she helped me see all Denial kept me from seeing. Acceptance didn’t stay as long as Denial because I didn’t need her to. Once Acceptance came and said her piece, my eyes and my heart opened, and I knew I could manage on my own… once I found Ryan the supports he needed to manage on his own.

Denial was a huge part of my journey. Just like real friends come in and out of your life, regardless of how long they stay, they leave a mark that you might not be who you are today without. So, even though Denial led me astray for longer than I would have liked, I don’t think I would be on the path I am today without her, and therefore, Ryan may not be where he is today either.

I’m sure Denial quickly left here and sat down at someone else’s table and set up residence in their head. For those of you running in the same circle with Denial, I want you to know she is there for a reason, but don’t let her stay long. Your child’s future depends on you making it on this journey without Denial whispering in your ear. So, when she stops to visit, make her bring the wine and send her on her way quickly.

You got this without her. I promise you do. 

Follow this journey on The AWEnesty of Autism.

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