Sometimes the question that doesn’t get asked comes up when we’re in a public place and we need an accommodation, or when we’re explaining something we are or are not doing.

Sometimes the question that doesn’t get asked comes up when we’re at social events and people meet my son for the first time. They will ask me about where he goes to school, what grade he’s in and the kinds of things he likes to do.

Eventually we get to a point in the conversation where I mention he’s on the autism spectrum.

They will pause the conversation for a moment. They will look at him and see a child who doesn’t look different from any other child, who may not be behaving out of the ordinary. Then they look at me, and sometimes I see the question in their eyes:

“Isn’t autism just a fad diagnosis — the diagnosis du jour so that schools and parents don’t have to do their jobs?”

To be honest, I wasn’t entirely convinced when his school first suggested he might be on the autism spectrum. But we knew he was struggling in class, and his father and I were struggling at home.

I knew we had tried different parenting and discipline techniques, talking with friends and teachers, reading books, doing Internet research and making little progress in teaching our son social interaction skills, manners, conversation skills and basic discipline.

If the school wanted to “label” him to give him extra attention and tailored help with things he struggled with, that was fine with us. Then we got the private diagnosis from a neuropsychologist. Then I started doing research.

Once we learned about autism spectrum disorder and how it was manifesting in our son, the accuracy of the diagnosis became clear. It was no longer a question of an unwarranted label on our son, but an informed awareness of an actual existing disorder and his unique developmental needs.

No one has ever asked me the unasked question, and if someone did actually ask me about autism as a fad or trendy diagnosis, my answer would be this:

No, autism is not a fad diagnosis. It is a complex and nuanced disorder, which means each person on the autism spectrum manifests it differently. You can’t always tell who has autism when you meet them and “when you’ve met one person with autism, you’ve met one person with autism.”

Autism feels “trendy” because experts and professionals have learned so much over the last decade that it’s now being talked about a lot more than it ever was. But being talked about a lot doesn’t make the diagnosis incorrect.

An autism diagnosis doesn’t mean schools and parents aren’t doing their jobs — it means they can do their jobs in the right way, the way that actually works and brings success for the child.

Yes, my son has autism.

Follow this journey on Autism Mom.

The Mighty is asking the following: Share one question people are afraid to ask about your experience with disability and disease. What’s the answer? 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.

Lead photo source: Thinkstock Images

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I’ve written thousands of words about my son, Kreed, over the years. Our perspective on raising him, his journey with communication and the heartache through his vast medical conditions. I’ve had so many conversations over the years with Kreed as well, though most centered around his wants and needs and teaching him to comment on his environment.

There are a couple of moments that pretty much brought me to tears. We initially asked Kreed if he knew what his diagnoses were, and he replied yes and with the word “autism.” We had never asked him this question in 16 years. I would have assumed he knew because it played such a part in his life. So many people talked about it, and I know he’s seen the word on papers. He was in the hospital during this time, so our conversation was limited but powerful.

Some months later, I engaged in a second conversation with Kreed regarding himself — an introduction of sorts straight from him. It’s not for me to say how he feels about autism and what’s hard or not. So rather than write about Kreed’s autism and how he feels, this video of Kreed using his device (Dynavox Compass) to communicate is far more powerful.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

Follow this journey on Kreed’s World and on the Kreed’s World Facebook page.


Last week we were all trucking through the chaotic abyss that was Target before Halloween, and I heard a child crying. And by crying I mean losing their freaking mind. My husband and I exchanged a knowing look over our soon-to-be 2-year-old’s head: been there.

We continued shopping, and I turned down an aisle where a 20-something gal was fishing through rows of K-Cups. She sighed loudly each time the invisible child screamed. She rolled her eyes. A young man who worked at the store stepped onto the aisle and started stocking. She, again, sighed loudly – this time for his benefit.

He smiled at her.

“Yeah, he’s annoying everyone in the store,” he said.

As she rolled her eyes, again, I translated in my head: “I would never allow my kids to…” and I smiled to myself. Been there, too.

But then she said something that lit me on fire.

“Yeah, well I saw him. He’s way too old to be acting like that.”

***

When I started writing (fairly) seriously, I basically stumbled, arms flailing, into a group of bloggers. Actually, a friend invited me to a group with a bunch of autism moms in it. As I read through their blogs, I began to see the commonalities and the things that bonded them. I was allowed to watch and learn as they lived it. It turned out, the woman who started the group met many of the other ladies in an autism writer’s group. They eventually started their own group and routinely allow me to bore them with “Hunger Games” and “Doctor Who” references.

They are moms, they are activists, they are researchers, and God Bless – they are hilarious. I’ve never met a more supportive group of women.

My family doesn’t have experience with autism. When I was teaching, I only had two kiddos on the spectrum. I knew of autism, but I didn’t understand it. Yes, I knew the facts and figures. Yes, I had bits of working knowledge and had heard a few anecdotes, but even as a teacher, I didn’t see it every day.

After joining the group, I would scroll through my news feed and see the faces of their children with autism. They are sweet and hilarious. They are impossible and beautiful. They are focused, and stubborn, and they are children, just like all children, who need to be loved and accepted. The more I read about these faces, the more I fell in love with them. I began to see them through their mother’s eyes: their quirks, their bravery and their determination.

***

In Target, I bit my tongue. Hard. Because one day this adorable girl will understand. Maybe not firsthand, but she’ll see it in a friend’s eyes. She’ll see it on a student’s face. Hopefully, someone will teach her about food allergies and clothing sensitivities. About repetitions and stims. Hopefully, someone will explain to her what a “meltdown” really is and how it feels to be discriminated against. I didn’t scold her. I didn’t reprimand her, because the truth is, someone had to teach me, too.

As we left, I saw the boy. He’d pulled it together and stood next to his mother in line – eyes down and holding a small Hot Wheels car. I couldn’t “tell” from looking at him. Just like the 20-something woman couldn’t. But I could tell from looking at her. His mom had it written all over her.

Her shoulders were still back. She didn’t hunch or hide. She didn’t avoid anyone’s eyes. The checker never looked at them as he scanned each item from her overflowing cart, but what he and the other shoppers didn’t know was that she’d won.

She’s not a “bad mother” with a “bad kid.” She’s a warrior who has placed herself squarely in front of every harm that seeks her child. She takes the stares and sneers so he won’t have to. She knows every detail about him, and today she won. They are still in Target. He is quiet, and he is safe. She knew how to help her son, and she’d probably taught him enough that he was able to help, too.

As we passed with our two items, I said Happy Halloween. She smiled. I’d like to think she knew that Happy Halloween really meant, “I see you, and I see him, and you both matter.”

So the next time you’re shopping and hear an invisible child, take a moment before you judge. Because somewhere in that store is a momma doing her very best, and you don’t know the whole story. Maybe it’s a 2-year-old who missed her nap. Maybe it’s a 4-year-old asserting his independence. Or maybe it’s a boy in conflict with the world, whose momma allows him to be invisible when he needs it, and does her best to clear a path for him when he’s ready to be seen.

Follow this journey on Lizadora.com.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


When 7-year-old Cadence, who has autism, was at school one day, she sat under her teacher’s desk and wrote a note to her mother Angela. Cadence wondered if autism made her “bad” after hearing remarks from adults and television programs that portrayed children with autism in a negative light. She wanted to set the record straight.

In the note, which Angela posted on the family’s public Facebook page, Cadence first asked if “being autism” made her “bad,” which prompted Angela to ask what gave her the idea. Cadence wrote about the misconception that being a parent of a child with autism is “hard” and if someone has autism they might “hurt people,” adding that kids who have autism “have to be put in [jail] to keep others safe or tied up.”

“I don’t like hurting people,” Cadence continued. “I don’t like being [scared]. I would be [scared] in a [jail] room. I was born [with] autism but that doesn’t mean I was born bad.”

Then, at the end of the note, Cadence asks her mother, “Are you crying?”

What ‘messages’ are children hearing – from ourselves, from other parents, at school, from media and in the general…

Posted by I am Cadence on Wednesday, November 11, 2015

Angela responded, “Yes. I have happy tears that you know what is true; and I have sad tears because there are lots of people who don’t know what is true.”

Angela captioned the photo of the letter, “This ‘conversation’, between Cadence and myself, started under her teachers desk – a ‘safe place’ where Cadence had put herself in her confusion that she was somehow ‘bad’ – a belief that had culminated from over-hearing other parents and hearing news stories.”

Angela told BuzzFeed News that she hoped the letter would serve as a reminder that the way adults talk about children affects them more than we might think.

“The burden of responsibility for enabling all children to feel safe, accepted and loved, rests with us, the ‘grown-ups’ – and sometimes we need reminding that we don’t always do a good job of it,” Angela told BuzzFeed. “There have, on a handful of occasions, been scenarios where grown ups who are either not familiar with her challenges, or not tolerant of how she experiences the world, have behaved and responded poorly to her. The negative impact on Cadence of these incidents have been very clear.”


A restaurant owner in Anchorage, Alaska, is standing up for an employee by “firing” a customer who berated him.

google image of little italy
Photo via Google Maps

On Tuesday, P.J. Gialopsos, who’s owned Little Italy Restaurante for 30 years, announced in a passionate Facebook post that the restaurant will no longer deliver to a customer who called her driver an idiot, among other explicit names, and accused him of being on drugs after mixing up an order. The driver, who has autism and a speech impediment, is a university student who’s worked for the restaurant for two years. After the mixup, he immediately retrieved the right order from his car and returned to the restaurant.

“He… has an amazingly inquisitive personality, a wicked sense of humor and one helluva work ethic!” Gialopsos wrote in a Facebook post that’s since had more than 1,000 shares. “It isn’t the first time I’ve had a comment about this employee, but normally, as soon as I explain, they are always VERY understanding that the mannerisms had a reason.”

“The fact that he has autism doesn’t cross anyone’s mind at the restaurant,” Gialopsos told The Mighty. “We just work, he just works, that’s it. Maybe it’s the mom in me, but I had to write that response.”

This has been pondered for days now: should I write this post and HOW should I write this post? Over the weekend we…

Posted by Little Italy Restaurante on Tuesday, November 10, 2015

 

“You would think, in the year 2015 the majority of the population would have learned or at least heard about autism,” Gialopsos says in her post. “I understand that there is a large portion of our population that is content to remain uninformed and uneducated, but that doesn’t give them [the] right to take that ignorance and turn it into a foul mouthed rant on two of my employees!… Therefore, we have fired this customer.”

The customer’s name, address and phone number is now tagged “DO NOT DELIVER.”

The post concludes:

And won’t that customer be surprised later in life to learn that his ‘idiot strung out’ delivery driver long ago turned out to be the physicist, microbiologist or chemical engineer who could quite possibly make a discovery that will save his sorry *** someday.

Read Gialopsos’ full post here.


It takes my son almost exactly 12 minutes to get through a cherry ICEE at Target. That means that I have 12 minutes in which to shop and get through the line. It’s like an un-athletic version of “American Ninja Warrior.” Due to poor planning on my part, I ran out of all three of the foods that my kid eats. It was go time.

Things were looking good. I was nine minutes in as I got in line, and there was still plenty of red slush in the bottom of his cup. I had this thing dialed. I was going to make it. Then it happened…

Someone tripped the security alarm. BEEP! BEEP! BEEP! My boy covered his ears and started screeching. Now, his is no ordinary screech. Princess Buttercup should consider herself lucky that the screeching eels in, “Princess Bride,” didn’t sound like this. It made the old lady next to us turned down her hearing aid and glare. The alarms were finally turned off, but my son continued. He was not upset anymore, but he was on a roll and nothing that I was going to do could stop it. He tossed his ICEE from the cart to the floor, and I searched my purse for wet wipes to clean up the spill.

I felt all the judgmental eyes on me. I heard every rude comment. I cursed the fact that my child’s favorite off-brand cereal was unavailable at any drive-through. I felt the tears stinging my eyes, but I was not going to cry in the grocery store. I was going to be one of those tough moms who make it all the way to the car, and then cry in the parking lot.

I wasn’t going to make it. I was searching for a place to abandon my cart when the man in front of me in line turned around.

If he cursed at me, I was going to break.

“I’m a father of four. Go in front of me. Don’t worry about them,” he said, as he gestured to the onlookers. I thanked him, swiped my credit card, and was out of there in record time.

That father was right. “Don’t worry about them.” It’s part of who we are as parents to want our children to be understood. I wanted nothing more than to sit every one of those people down and educate them about autism, but that was not my job that day. My job was to make sure my child’s needs were met. I was doing that to the best of my ability. (It got easier after I discovered noise-canceling headphone, believe me.)

The world is going to be full of judgmental people. If you don’t believe me, just read the comments on any given post. Anywhere. I realize ignoring the judgment is easier said than done. Am I saying we shouldn’t bother to educate people about autism? Of course not, otherwise I would not burn my retinas everyday on my computer, but sometimes we just need to get through the line.

On that day, my child’s diagnosis was still new. I had not yet grown my thick warrior mom skin. This moment of kindness was everything. When we made it to the car, I did not cry. I made a choice. I chose not to remember the faces of the people who glared. I chose remember the man who helped.

Follow this journey on RaisingJedi and the RaisingJedi Facebook page.

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