awareness ribbon for autism

I haven’t written a post for Autism Awareness Month before. Part of it is because when I was getting my website going, I thought I would only ever write on one subject… basketball. The other part is that, honestly, I still haven’t figured out my stance on the entire thing. How can I write on a topic when I’m not sure how I feel about it?

There are so many different ways I could address Autism Awareness Month. I could talk about how I don’t agree with some groups’ stances. I could talk about what color I think you should wear. I could talk about whether to call me “a person with autism” or “an autistic person.” I could talk about functioning labels or how far the spectrum is supposed to go. But here’s the thing: I’m not sure about most of this.

So instead, I’ll tell you how autism affects me. That’s all I can do. I can’t tell you how autism affects someone else. We are all affected by autism in different ways, whether we are on the spectrum ourselves or not. I don’t know how autism makes you feel. But I can tell you how it makes me feel… or I can try. We’ll see.

My first “official” experience with autism came when I decided to begin spending time in a self-contained classroom at a local elementary school as a junior in high school. I was very comfortable in that classroom, loved the kids and the teachers (still do!), and looked forward to every day that I got to spend with them (still do!). I still love visiting that classroom and spending time with students past and present.

As it would turn out, I had been experiencing autism my entire life. When I was diagnosed with autism, I initially felt very conflicted. Soon thereafter, I felt thankful. Today, I feel happy… mostly.

There are lots of things that make an individual unique. One thing that makes me unique is my job and how I got here. Another thing that makes me unique is that my grandfather was the mayor of my hometown growing up. Autism is just another one of those things that makes me unique.

Autism makes my life loud. That’s the best adjective I have found. Everything is amplified. I don’t mean this only in terms of my sense of hearing, although that is one part of it. I feel loudly. A light touch feels not so light. A bright light feels brighter. A soft buzzing from a light feels thunderous. Instead of happy, I feel overwhelmed. Instead of sad, I feel overwhelmed. The general perception is that autistic people don’t feel empathy. I, along with most individuals on the spectrum, find the reverse is true. You can read more about the Intense World Theory here.

Autism makes my life stressful. When everything is louder, situations tend to be a little more stressful. I’m super easy to sneak up on. I live my life constantly on edge. And sometimes, I fall off the edge and a meltdown occurs. And that’s OK. Well, maybe it isn’t OK. But it has to be. I don’t have a choice. It has to be OK and I have to keep going. I work hard to notice when I see myself trending toward a meltdown, so I can change course. It has taken a lot of work for me to get to this point of self-awareness, but it still doesn’t work all the time.

Autism makes my life organized. Actually, that’s probably the OCD, which is a common comorbidity associated with autism. I do the same thing the same way every time. I count lots of things, notice things that most think are unimportant, and stress over tiny imperfections. I get thoughts stuck in my head, over and over and over again. Phrases, images, memories, patterns. These can all become overwhelming. I use them to my advantage as much as I can. I think this is part of why I am good at my job. And I am very good at my job. I notice the little things, the nuances that others tend to overlook. I find the pattern and I find it quickly.

It’s funny, though, that as much as I notice the little things, I tend to miss the big picture. I’m much more likely to notice that your tag is sticking out of your shirt (which would never happen to me because I hate tags) than notice that you are sad.

There is no doubt that autism makes my life difficult, but it also makes my life beautiful. When everything is more intense, then the everyday, the mundane, the typical, the normal… those things become outstanding. I can’t speak for you or anyone else, on the spectrum or not. Our experiences are all unique. Regardless, I do believe that it is important to find the beautiful. Recognize that there is bad, there is ugly, there is disrespect, there is ignorance and there are meltdowns. Those things are inevitable. But there is also good.

Find your support system and acknowledge them. Find the good and celebrate it. Find the beautiful and treasure it.

Follow this journey on Erinmmckinney.

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 to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

RELATED VIDEOS


There are two things I said I’d never do when I graduated: teach junior high and teach special education.

When I graduated my teaching program, Texas was in crisis. Education funding had been cut, districts were laying off teachers and hiring freezes were put in place. To get my foot in the door, I decided to sub.

One day, I got a phone call. Would I mind subbing a classroom of children with autism?

I thought, “Well, you can do anything for a day!” and I agreed. I subbed there for a week, and I fell in love. 

That experience led me to get my special education certification. My first teaching position was another classroom of children with autism. And it was life-changing. These students had already been through three teachers, I was told. These students are elopers, I was told. These students have high behaviors, I was told. These students are yours, I was told.

In the midst of setting up my classroom and learning everything I could about eloping and behavior and structured classrooms, I failed to notice my marriage was falling apart. Two months into my new position, my husband asked me for a divorce.

I was devastated and crying behind my desk. What was I doing here? I can’t teach these kids. I can’t take care of myself. I’ve made a mistake. This is not for me.

My classroom door burst open and running in came one of my most favorite loves. He’d escaped from his assistant (again). I dried my eyes and turned around to greet him. Before I could grab his hand and lead him back to where he was meant to go, he stopped.

SchoolPic1

He cocked his head to the right, he cocked his head to the left. He reached up and held my head in both of his hands. He smiled. An ear-to-ear smile. He slightly touched his head to mine. He held his head there until I looked at him. He bumped his forehead against mine again and smiled. I smiled back. He bumped forehead with me once more and went off with his assistant.

It was a life-changing moment. 

A wordless, life-changing moment. One I will never forget. In that look, he made my heart hurt less, he made me realize people needed me, he made me realize I was doing what I was supposed to be doing all along, he made me realize I was going to be fine.

I’ve since moved to another district and now teach in a middle school classroom of kids with autism.

And every single day I think of that wordless moment that made me realize I was worthy.

When desks are flying at me, I am worthy.

When routines and schedules get changed and I’m in the middle of using visuals to talk a student through a meltdown, I am worthy.

When I’m getting bit, hit, and kicked, I am worthy.

And you know what? So are they. 

Whatever my students learn from me, I hope the lesson that stays is one it took a third grader with autism to teach me — you are worthy.

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 to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.


I met Dr. Alan J. Schwartz for the first time when he was the anesthesiologist for my daughter about two years ago. All of the doctors that care for Addie at Children’s Hospital of Philadelphia (CHOP) are awesome, but I’d like to think it was fate the day Dr. Schwartz walked into pre-op.

He looks like Steven Spielberg and reminds me of someone Spielberg would make a movie about. He is so personable and caring. There’s no rushing and everyone is important. My daughter was important to him.

He knew Addie was “complicated” and had a long medical history. She has to be intubated for all procedures, big or small (even MRIs, due to her lung disease). When Dr. Schwartz walked in, it was as if God sent me Mary Poppins dressed in scrubs.

He explained to me that he believes in the patient and the family, and that the patient/family centered approach works best. He told me he would take the very best care of her. I did not doubt him at all.

He said I was to “suit up” and I would carry her to the operating room myself and actually hold her. They would put a mask on her face while I held her and I would speak to her to comfort her until she fell asleep. Once asleep, I would leave and they would “do their thing.” This would alleviate the scariness to an autistic child and prevent the crying and screaming which would lead to issues with her breathing because of her rare lung disease. This would also prevent a possible seizure brought on from all of these things (she has a seizure history because of a rare brain malformation).

Flash Forward to now. It’s 2015 and Addie is now 4. She has a service dog named Data who we adore. We have a doctor named Dr. Dunham, and his secretary, Eileen Kelm, on speed dial. They’re superheroes, but when Addie needed another procedure I took a chance and emailed Dr. Schwartz.

I am not joking, the guy emailed me within 5 minutes. He said he wasn’t working as many hours but he would of course take care of Addie in anesthesia and coordinate with our other doctors. I was suddenly watching a CHOP tour de force at work. Addie sees a host of specialists at CHOP, and they’re all awesome, but this is just extraordinary.

As it turned out, Dr. Schwartz had published a paper about the importance of special needs children having their service animals with them leading up to procedures. We would try this with Addie.

When the time came, the gurney smoothly sailed down the hall towards the operating room. On it perched Addie with Data. She was smiling and hugging her 67-pound best friend. I swear he was smiling back at her.

unnamed-4
Addie and Data snuggling and smiling.

I walked alongside of the gurney in scrubs, trying to look as casually happy as they did. As we passed people in the hall, everyone stared and smiled and waved like she was on a float and she waved back. She loved it.

unnamed-1
Addie and Data sailing into the OR together right before surgery.

She was completely relaxed and without a care in the world — it was exactly what we wanted for her pre-surgery. I think I was the only one nervous. The doors of the OR opened. Dr. Schwartz let Data and I stay until she went under anesthesia.

unnamed
You’d never know she was about to have surgery as she was just so happy to have her dog with her. Dr. Schwartz is behind them.
unnamed-3
Addie and Data recovering post surgery.

They used a mask and did nothing invasive with her at all until she was asleep as to avoid upsetting her. She literally held onto Data as she slept, talking to him the whole time. I knew she was safe. They had Data and I leave so they could intubate her and begin the surgery. She never felt a thing.

The last thing she remembered was her best friend Data and her Mommy.

unnamed-2
Dr. Dunham and Dr. Schwartz “consult” with Data about the surgery.

After the procedure Addie was recovering with Data by her side and Dr. Schwartz walked in. I hugged him. He reminded me that there truly are good people out there. He helped a girl who once would scream, throw up and be terrified of procedures. Instead she had sailed away to surgery, waving and smiling.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 


It’s Saturday, and despite the noise and the crowds, I am going to have to tackle Walmart. We desperately need food, and now that I work all week, I have become a weekend shopper just like everyone else. I try to sneak out of the house and I am just rounding my SUV when the garage door quickly opens. My 5-year-old runs out with her purse slung across her body and says, “I come wit you, Mom!” It’s not a question — it’s more of a statement. I know I am not going to get out of taking her with me.

My daughter, Gabby, has autism, sensory processing disorder, anxiety and panic disorder. A trip to Walmart is extremely hard for her to handle, hence my trying to sneak out. I strap her in, and we are on our way. She is watching “Tangled” on the car television. I lower the volume and say, “It’s going to be really loud and busy today at the store. You are going to have to hang in there with me today, OK, baby?” She does not respond, but I look back in the rearview mirror and see her nodding her sweet head.

We pull in and find a handicapped spot available — a rarity on a Saturday. I excitedly pull my girl out of the car and make sure I have a good grasp on her arm even before her little feet hit the pavement. We make our way through the crowded parking lot and finally get into the store. I was just wiping down the basket when my daughter starts to do a little dance with her feet, grabs her shorts and says a bit to loudly, “I gotta go potty, Mom! Right now!” I abandon our cart and hurry her to the ladies’ restroom.

I come to a stop when I see a lady standing in the doorway trying to see when the restroom is clear. She backs away from the door with a sigh. I look over her head to see an extremely tall, large teenager. He has headphones on and is doing a little dance on his big feet himself. I said to her, “If you guys need to go, please do. We need to use the restroom, too, and I have no problem with you guys using the handicapped bathroom.” She gives me a relieved smile and says, “I always try to clear the bathroom out before bringing him in, but today we just can’t catch a break.” I squeezed her arm and respond, “We’re in the same boat. It’s just easier because she is a girl, and it won’t look strange when I am dragging her to the bathroom when she is 17.” She looks down at my daughter and says, “Autism?” I tell her, “Yes, among other things. You guys come on in. We are on the same team.”

She grabs her son’s hand and drags him to the handicap stall. I can hear her explaining the process to her son, probably something she has done a million times. We are finishing up and washing our hands when a woman bursts into the bathroom. She immediately stops when she sees the large guy washing his hands and looks at our group and gives us the stank-eye. She starts to walk forward but then stops and spins back around. She looks at us and says, “That’s ridiculous. He is old enough to use the men’s restroom.” The other mother looks immediately defeated. I turn to the stranger and, facing her straight on, I say, “Our babies are going to use the restroom with us for the rest of our lives. Do you really think if there was another option that we would be using this restroom? If by any chance there was a family restroom, I can guarantee she would have used it. Instead of just walking through, you had to give us your two cents and make her feel bad.” The lady immediately noticed the young man wearing a Sponge Bob T-shirt and headphones, and she seemed to fully comprehend the reason he is in the ladies bathroom.

I have to give it to her, though. Instead of just going about her business, she turns to the boy’s mother and, offering an apology, says, “I didn’t know.”

Just like that, we are done and walking back toward the baskets. We are each grabbing our carts and our children when she smiles brightly at me and we hug. She pulls back and says, “Thanks for that. I have stopped defending us lately, and it was nice to have someone else be on our team for once.” We chatted for a few minutes and then took our children in opposite directions.

parents walking hand-in-hand with daughter Being a parent to a child with special needs was never part of my life plan. I had big dreams for my little girl, and although those dreams are different now, they are not less. It can be difficult to have a child with special needs. You are fighting day-in and day-out to cater to the needs of a child who is not mentally or physically well. And sometimes, when you are just trying to get a few normal things done, a trip to the bathroom makes you a target. You then have to be an advocate for your child when all you really wanted to do was just buy some groceries and get back home.

Autism is an invisible disability. You cannot look at my child and immediately know she has special needs, which is sometimes a blessing and a curse. If my child was in a wheelchair or had the angelic face of a child with Down syndrome, strangers would immediately be clued into the fact that she requires special care and consideration. So instead of a quick trip to the store that afternoon, we ended up meeting another family on our team. When I say “team,” I mean someone who is fighting battles and advocating as hard as I am. A family striving to live life as well as possible when the deck is stacked against them. That’s our team. Though it’s a team I never sought to join, I have embraced it. I’ve met some of the most inspiring and inspirational people of my life. I have met people who humble me on a daily basis and people who are always willing to jump in and lend a hand or pick me up when I fall.

It’s not where I thought I wanted to be, but it’s amazing to be part of this team.

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 to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Over the last three years, I’ve written several posts about fear. They have all been self-centered, as in I fear this and I fear that or I worry about this and I worry about that. My mind does not easily shut off — and my heart, it never rests.

Do you know what the opposite of fear is?

The opposite of fear is reverencerespect or awe for somebody or something.

In terms of autism, I am learning to show reverence — not toward the developmental delay itself, but toward my son. I revere Luca. I hold him in high regard. I have learned to understand and even appreciate the way his mind is wired.

And I am here to tell you: my son is not broken.

No child is broken.

No matter the diagnosis, our children are not broken.

Two good friends of mine have young children who have received different diagnoses, and I have a handful of IG friends who are in the process of receiving a diagnoses for their young children. We meet each other through the celebration of milestones and the little-big joys; but most often, we meet each other with heavy hearts and tears. These tears come from a place of fear, of feeling inadequate and under-qualified to humbly serve these children we’ve been given.

These tears also come from you.

You being the typical person, unable to identify with or understand a diagnosis until it has been handed to you or your child. Please understand the respect with which I am saying this. Until August 3, 2011, I, too, was a typical person, unable to identify with or understand the diagnosis of autism. Nearly three years later, I am not better than you — in no way, shape or form.

I am more aware, more knowledgeable, more accepting.

I simply have new experiences that have challenged and blessed me, and given me a different perspective than what I once had.

And I want you to know that our children, no matter the diagnosis, are blessings. They are gifts. And either way, we don’t deserve them, you and I.

Please don’t look at me with fear and pity in your eyes. 

Please don’t tell me my son has a handicap or a mental illness. He is not ill; he is well.

Please don’t disregard my son, or any other child’s, ability to do anything.

Please, show our children reverence — they are indeed fighting a battle that neither you nor I will ever know.

For so long, I’ve fought for awareness. Autism awareness. But what about acceptance? Why is not OK for so many people to just accept? To sit and soak in all the goodness that seeps into our lives on a daily basis?

Soak it up, friends.

As for fear? I choose to rejoice instead of fear. There is, as for many things, a time and place — a moment of acceptance when it is healthy to realize and deal with fears. But love. And joy. Peace. And hope. These are worth living for. These are worth fighting for. These are the fibers that need to be woven into our children, through us.

This post originally appeared on AllisonTrowbridge.com.

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 to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


After my son was diagnosed with autism, I constantly worried about how the world would treat him. Those worries escalated when he was at school interacting with classmates and under the care of others, but with the help of his teachers we found a way to help foster a positive, supportive community for him. It was accomplished by talking to his classmates about autism, and the results have been more effective and encouraging than I ever hoped.

Alex is outgoing, energetic, and has a knack for improv comedyHis big brother is his best friend and his favorite things are Minecraft, sea lions and Lego. He is also autistic, with some social, sensory, attention and impulse control issues. As “Twice-Exceptional,” it seems at times that he is caught in between the typical and special-needs world, so sometimes he struggles to find a sense of belonging and acceptance. As he grew older, those struggles became greater, and we hoped to find a way to help.

Some of you may be wondering why I would want my son’s classmates to know about his autism label. Wouldn’t that complicate things because he would seem more different? I believe honest dialogue about special needs is crucial to acceptance, and that children can be surprisingly open-minded about diversity and uniqueness. If you tell them, “Different is cool,” they will believe you. The trick is to explain those differences in a matter-of-fact and positive way, before they can be affected by the prejudices of the world.

I once read these words:

If you’re the parent of a child with AS and worried about what will happen if other students find out, here’s a thought: they already know. They know they have a classmate who has different and difficult behaviors. But they don’t realize the reasons. And the reasons they imagine are much worse than the facts.”

I felt that they were more likely to be kind if they understood more about him. As the article stated, “… children are never too young to learn that… we need to treat each other with patience, kindness and understanding.”

I was also inspired by a talk given by the Executive Director of our local Autism Society chapter, who shared that it was important to share with classmates about strengths, weaknesses, and how the other children could help.

Taking that into account, Alex and I first shared with his classmates about autism when he was in the first grade. We did it again when he was in second grade, both times in conjunction with his Star Student presentation.

Any time I discuss autism, it is with Alex’s permission, and he is proud to talk about his “special brain.” We wanted to show that autism is just one of the many things that makes Alex interesting (if you want to read the script I used, you can find it here: “The Star: Telling Classmates About Autism”). We made sure to point out that even though Alex was a little bit different, he also was just the same as the other students. Both times I contacted the teacher first to gain permission, and gave her a copy of what would be said so that she could be prepared to answer any questions the students may have later.

There were still the occasional bumpy moments after the autism discussion, but we could feel secure in the knowledge that Alex had allies (and an appreciative audience for his many jokes). I even heard from some supportive, positive parents. It was incredibly encouraging. Certain students went out of their way to help Alex stay organized, calm him when frustrated and even defend him. One dear girl became quite angry when she heard Alex referred to as “crazy in his head.” She protested, “I don’t care what you say, he is my FRIEND! He just has some trouble sometimes with his big feelings.”

young children in classroom

This past school year, the opportunity to share about autism had not yet presented itself. When I finally mentioned it to Alex’s third grade teacher I was pleasantly surprised find out that she had already broached the subject with her students. She said:

“I wanted to be sure that they all understood his different needs. I use my morning meeting time to talk about empathy, our differences, and tolerance. When I told the children that he has autism, I asked them if they knew what that was. Some of the kids that had him in their class last year remembered your lesson about him thinking differently.

“I talked to them about how he is unique (just like all of them) and he uses his brain differently. I told them that he sometimes needs brain breaks to recharge and that he sometimes needs to get out of his seat, walk around, jump, or mumble to himself. I told them that these things all are okay, and that it is just his way of gathering information so that he can do his best.

“This class is so receptive and kind and they really seemed to understand. One of the kids said, ‘Yeah, and he is REALLY smart!’ We all adore him.”

I was deeply moved that she cared enough to broach such a potentially complicated topic, and that she did so to help create a positive, inclusive atmosphere in her classroom. What’s even more inspiring is that her students soon had the opportunity to put her teachings about acceptance into action, and decided to stand up and advocate for Alex.

A substitute teacher was brought into Alex’s classroom at the last minute who had not yet been informed of his IEP accommodations. The collaborative Exceptional Education teacher later shared with me that when she arrived in the class, she noticed the substitute redirecting Alex to stop moving around. Just as the ExEd teacher was about to explain to the substitute that Alex required certain accommodations, the STUDENTS spoke up instead.

She later told me, “It was as if the other children were feeling that they had to advocate for him… They were being very protective of Alex.” The students politely informed the substitute that he was doing what he usually does and works better when he can take breaks and get out of his chair, saying, “Our teacher lets him move around the class.” Then several students pitched in and helped Alex get refocused and caught up on the lesson. According to the ExEd teacher, after that, the rest of the day went much more smoothly and the substitute seemed to have a better understanding of Alex.

Thanks to a caring group of students, a day that could have been potentially frustrating for Alex turned into a great day instead. Alex’s Ex Ed teacher said, “All I could think of was what an amazing group of kids he has in his class! They understand and support him as well as admire his strengths.” I agree wholeheartedly.

Some of those caring students are in the picture in this article (with their parents’ permission), and I feel blessed that they and other incredible children have consistently supported and befriended Alex over the past several years. That is what happens when children are taught to be kind and embrace uniqueness, and they have parents who back up those positive teachings at home. It also helps to have caring teachers who are willing to tackle the tough subjects and practice inclusiveness in their classroom.

I am immensely grateful to all the teachers, students and parents who have given my entire family a sense of community and support! Every day when I send my child to school I can relax, secure in the knowledge that he is in good hands.

This is a follow-up to a previous story at The Mighty, “How I Explained My Son’s Autism Diagnosis to Him.” 

Portions of this story first appeared on the website, “Seriously Not Boring.” You can also find Jennifer Bittner at her Seriously Not Boring Facebook page

Want to end the stigma around disabilityLike us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.