If I am being honest, I have always known in my heart that he was wonderfully different. Quirky, I used to say. But it wasn’t until this last February, shortly before his 8th birthday, that we pursued an answer.

Why, you ask? What changed? We were at a birthday party for my son’s best friend, and his cake had Hot Wheels on it. My son is intensely focused on cars, or really anything with a motor. The birthday boy went around the table, letting each child pick a car to keep. My son wanted a very specific car, but by the time it was his turn to choose, it was gone.

I had been watching from across the room, my body tense, as I was already anticipating what was to come. I watched his chest heaving, his tiny fists clenching and un-clenching, tiny beads of sweat forming on his upper lip, trying so hard to control how upset he was. But he couldn’t control it. He needed that car. He had to have that car.

What a brat, right? What a spoiled, entitled child! It wasn’t even his party! How dare he! What kind of crappy parenting goes on in a house that raises a kid like that? Except that he isn’t a “brat,” and we’re doing our best, thank you very much.

So I watched this scene unfold, and I couldn’t ignore the stares from everyone else in the room watching my son. I realized with a sinking feeling in my gut that his friends noticed, too.

In truth, so much of this process has felt like a gut punch — the evaluation, the diagnosis, the terminology, the criteria and guidelines and mandates and recommendations. All of it was a confirmation of the quiet whispers that have lived within me.

My sweet, sensitive, talkative boy has autism.

There, I said it.

And so began my journey to seek out some truth. Because one day, I knew he would come to me and want to know why he feels different, why he processes differently or behaves differently, or talks differently. And I am going to give him the dignity of having an answer. Of having a name and a plethora of knowledge and research and resources and names of people just like him and a whole group of us who love him and are here to encourage him and assure him that he is exactly who he was born to be. That he is bigger than autism. That the whole of him is not defined by the DSM.

The hard truth is the days since have been difficult. There is a little bit of guilt for me in saying that I have been grieving the loss of what I thought his life would look like. Life is hard for everyone, of course, but life may be extra hard for him. And it makes me sad because, well, because I am a mother. I am his mom, and I would live 100 lifetimes of heartache, if only he didn’t have to live one. Because we naturally as parents want the world to be fair and just and kind to our children. For them to guard their hearts out of caution, but never out of necessity.

This year has brought us bullying and teasing and confusion about why someone wouldn’t want to be his friend. It has brought struggle. It has brought heartache. It has brought the soul-crushing moment of hearing your child tell you they wish they didn’t know anything about autism, because then they could just be like everyone else.

But it has brought peace, too. It has brought awareness and so much knowledge. There is power in that knowledge, in the slow stripping away of fear and uncertainty. A diagnosis isn’t about learning how to “fix” my child, or how to make him adjust to our narrow confines and ideas about what the world should look like. But rather, it’s about how I can adjust my world to fit his. To learn from him, to grow with him, to nurture him. What I want is for the world to fit into his parameters. Is that realistic? Perhaps not. But here, in my small corner of the universe, I can keep accommodating his unique needs and celebrating his differences. And the truth is, I only have room in my life for the people who are on board with doing that, too.

My sweet boy recently shared some really beautiful insight into his heart. After tucking him into bed the other night, I was leaving the room and I heard his voice: “Mom, having autism is like having a freckle. It’s only one small part of me, but I wouldn’t be the same without it.”

Yes, son. Just like the sky is lit up with thousands of stars, you light up for thousands of reasons, one of which happens to be autism.

mom and son making funny faces
Sara and her son.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) 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 Submit a Story page for more about our submission guidelines.


TippyTalk logo of rainbow hands in a star shape Rob Laffan wanted nothing more than to help his daughter Sadie communicate her needs. Sadie, who’s on the autism spectrum, is nonverbal and would grow understandably frustrated when she couldn’t tell her parents what she wanted, needed or felt. When she learned to use a picture exchange communication system (PECS) board — a tool that resembles a picture book and allows many nonverbal people to point to what they need — communication became easier. But PECS boards can still present challenges — for one, the person using it has to physically be able to bring the pictures, even if they’re on a tablet, to another person. Also, if in book form, the pictures are easily lost or damaged, especially when a child is using them.

Laffan, a student at the Limerick Institute of Technology (LIT) in Ireland, came up with a solution: “TippyTalk” — a touchscreen communication system that takes a PECS board to a computer, tablet or phone and then transfers the pictures to text messages.

“TippyTalk enabled Sadie to communicate with me even if I wasn’t in the house, even if I was in a different country,” Laffan told Engineers Journal. “When I am in college or when I am away I get texts from her telling me how she is feeling.”

screenshot of TippyTalk, with texts that read "Hi Daddy, my leg hurts." "Hi Daddy, my arm hurts." "Hi Daddy, my belly hurts."

The first screen that pops up when Sadie, now 5, goes to use TippyTalk shows two pictures: one of her dad and one of her mom Emily. After she selects who she’d like to communicate with, she’s offered more than 260 images that range in wants, needs and feelings. When Sadie then touches, for example, a picture of an apple, this text is sent to whichever parent she’s selected: “Hi, I’m hungry, may I have an apple?”

“It was intuitive enough that she knew exactly where she was going. When she saw her pictures, she saw what she wanted,” Laffan told UTV Ireland. “She was able to touch the button and the text was sent out to my phone.”

screenshot of TippyTalk with texts that read "Hi Daddy I would like an orange please." "Hi Daddy I feel like a hug."

Laffan is continually adding images to Tippy Talk.

“As [Sadie] gets older I can enlarge on the images to meet her needs,” he told the Irish Mirror.

On a personal level, the technology has already enhanced Laffan’s relationship with Sadie.

“Being able to understand my girl’s exact desire, needs and feeling has brought me closer to really understanding and loving her little personality,” he told The Mighty in an email. “Now it’s just a case of giving the same joy to other parents like me.”

Screenshot of TippyTalk with text that reads "Hi Daddy, I want my jigsaw please."

screenshot of TippyTalk with texts that read "Hi Daddy, I feel excited." "Hi Daddy, I want stickers please."

Though TippyTalk was designed with Sadie in mind, Laffan says the technology can benefit any person who may find verbally communicating challenging.

TippyTalk won Laffan “College Entrepreneur of the Year 2015,” the top prize at the Enterprise Ireland Student Entrepreneur Awards 2015, earning Laffa €10,000 (about $11,000). With an additional investor secured, Laffan says TippyTalk should be available to the public this summer.

“I’m only a dad with a idea,” Laffan told The Mighty. “An idea that worked.”

I was a teenager working my very first job. I was a child care attendant at a little mom and pop fitness center, and I had never heard of autism. To be fair, this was over 20 years ago (yes, I admit it), and I lived in a pretty small town. I really liked my job. I loved the kids, and the time limit was only an hour and a half. I could handle any kid for an hour and a half. Then came Sam.

When Sam’s mother walked through the door I knew I was in for a very long 90 minutes. Along with Sam came both an older brother and an infant. Sam’s brother, David, would always make me laugh. He was charming and always tucked his sweatpants into his socks. The infant, Max, did as infants do. Sam was a handsome boy with beautiful blond locks who would never look me in the eye.

The child care area consisted of two small rooms. Sometimes that second room would have to belong to Sam. We split the kids up — the other attendant would take the smallest kids and I would take the big ones. Sam wasn’t violent, he just didn’t seem to know his own strength, which, for a 4-year-old, was impressive. He would pace back and forth, and if a child was in his path, he would simply mow the child over. I knew he wasn’t mean. I wanted so badly for the other kids to understand that, but every time it was the same. Sometimes we had to call down to his mother to pick up early if he was having a bad day. She never seemed mad, just… defeated. Sometimes Sam would look out the window and have a little smile. I would stand next to him and look, too, wondering what he saw. I wanted so badly to connect with him; I could only imagine how his mother felt.

About 15 years later, my son was diagnosed with autism. I wondered if Sam might have had autism or some other disability, too.

After working at the fitness center for years, I got my associate teacher certification to teach preschool. I taught for years before I had my son. Sometimes I would come across other children who would not look me in the eye. Maybe they would pace or hum. But I had still never heard one word about autism or other disabilities in all those hours in class. The only course I got was the crash course that came along with getting a medical report.

Years later, I took a class at the local college. It was called “Exceptional Needs,” and it covered many different disabilities. It was considered an elective and was only offered every other semester. I needed that class. I needed it long before my son’s diagnosis. I needed it long before teaching.

Learning about children with disabilities should not be an elective. As an early childhood educator, you may be the first teacher a child with a disability will have. They deserve a teacher who can identify a need. Teachers need tools to help the other children understand a classmate’s behavior, because those students will go on. Some children with disabilities will become integrated, and their peers will grow up. They might have children. Those children might have autism or other disabilities. Their crash course should not come with a medical report.

Sam would be a grown man now. I don’t know anything about him. However, I do think about him, particularly when I hear my name over the loudspeaker at the gym.

Follow this journey on RaisingJedi and the RaisingJedi Facebook page.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Most kids go to school to learn things such as reading, writing and math. Additionally, they may pick up important executive functioning skills, social skills or enjoy some extra-curricular activities. School can teach children a lot of useful tools and prepare them for life.

But what happens when school becomes less about learning and more about survival? As someone on the autism spectrum who wasn’t diagnosed until tenth grade, that’s what happened to me. While all of my classmates were trying to figure out how to solve homework problems for math, I was trying to figure out how I would live through yet another traumatic day of panic attacks.

My mornings would begin with the sound of my alarm. It was a sound I had learned to dread, because it meant I had to face another day. After hitting the snooze multiple times in an attempt to avoid the terrifying feeling of anticipation, my parents would finally wake me up themselves. I was already running late.

I usually had to walk to and from school, which was about a mile each way. But by this time, I was so stressed out that my mom offered to drive me. Once I arrived, I began to sob. I didn’t want to go in. It was torture to me. But I had no choice. I dried my tears and got out of the car. I could hear the flag banging on the flagpole. That sound still haunts me to this day.

There were so many people in the building. The mixed smells of body odor, sulfur from construction on the building and commercial cleaning supplies were overpowering. I could hear talking, laughing, shouting, lockers slamming and the bell ringing, but I couldn’t hear myself think. My first class hadn’t even started, and I was already in panic mode.

My heart pounded. My breathing quickened. I felt like I was going to have a heart attack. The teachers kept telling me I was fine, but I went straight to the counseling center, which I was very familiar with by that point. They knew me well there. I remember the crisis counselor coming over to me and merely asking if I wanted to go home. I nodded, and they called my house for my mom to come back and pick me up. They knew I couldn’t learn anything in this panicked state, and I had been in this state every day for nearly two years.

It took quite a few months more from that point for the school district to finally allow me to transfer to a school better suited for my needs. A place where I didn’t have to worry about surviving sounds and smells, let alone misunderstandings. A place where I could begin to recover from the daily trauma and finally learn. I eventually graduated from this school in 2007 with a class of fewer than 20 other students.

Education is important, but no one can learn in the panicked state that I was in. It was all I could do just to survive. Our kids deserve better than this, and in some aspects perhaps we have changed for the better. But we still have a long way to go in terms of understanding and providing for students with differences. Let’s make sure that no more students fall through the cracks. Let’s make school a place where students can focus on learning — not just surviving.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

In a review on The Guardian, Maya Hattenstone, who has autism, and her dad Simon Hattenstone discussed the first two episodes of “The A Word,” an upcoming BBC TV series about a family whose 5-year-old son Joe just received an autism diagnosis. You can read their full review here, but we’ve highlighted a few main points for you.

As a parent, Simon Hattenstone found parts of the show relatable — when Joe feels isolated at his own birthday party, how he has difficulty making friends and how other onlookers make assumptions and snap judgments about him and his parents. Hattenstone’s two biggest issues so far with the show are 1) it, like many other media portrayals of autism, has an autistic character who behaves prodigy-like (Joe’s mind works like a musical database). “His dad even calls him Mozart,” Hattenstone writes. “And this is the classic autism trope.” Second, although Joe’s mother describes him as funny and a chatterbox, Hattenstone says the character rarely is either. As a dad who loves his daughter’s humor and “quirks,” Hattenstone hopes Joe’s character begins to show more personality.

In Maya Hattenstone’s review, she describes the moments that most resonated with her — Joe standing alone on the playground, finding it difficult to change routine and melting down at his birthday party. Like her dad, Hattenstone found Joe’s musical affinity a bit of a stretch, even though she loves music and lyrics. “Calling him a musical genius seemed like a stereotype,” she wrote. She also found the speed of reaching his diagnosis unrealistic. “I came away from ‘The A Word’ with mixed feelings,” Hattenstone wrote. “While it was thought-provoking, Joe’s character felt like a standardized, generic portrayal. For me, it only cracked the outside layer of autism.”

family members of "The A Word" sit on their porch
Photo courtesy of AMC/SundanceTV

“The A-Word” is a one-hour, six episode show that will air on the SundanceTV channel following the BBC premiere on March 22, according to an AMC Networks press release. It’s an adaption of an award-winning 2010 Israeli series called “Yellow Peppers.” The announcement of the show comes nearly a year and a half since the premiere of the sixth and final season of NBC’s critically acclaimed show “Parenthood.” “Parenthood” centered around the story of the Braverman family and often featured the challenges of one of the characters, Max Braverman, who has Asperger’s syndrome in the show. As it turned out, Max Braverman was based off the son of the show’s creator, Jason Katims.

Julian Maha, M.D., the founder and CEO of KultureCity, an Alabama-based autism nonprofit, thinks “The A-Word” has the potential to have a positive impact on our society, but that depends on how the story is told.

“Programs like ‘The A-Word’ bring a very interesting concept to television,” Maha previously told The Mighty in an email. “At the very least, it will help create more awareness on the topic of autism. At its best it could help promote autism acceptance and inclusion. The key is in the show’s execution and storytelling. If that is successful, this show could go a long way in helping the general public understand that autism can be an opportunity to live a life without limits outside the box.”

I remember the day that a vortex of words swirled around my head as the world shifted under my feet. I felt the hair on the back of my neck rise. I felt the tears I didn’t want to acknowledge held back. And all I could think was, “Keep asking questions. You have to have more questions.” Because when you stop asking questions and they walk you to the door and you step into the sunshine, your world will be a completely different place.

Looking back as one always does, we beat ourselves up and ask, “Should we have seen it?” Our beautiful baby, Caleb, was as new as our experience being parents. He was tiny, he was perfect, he was ours. And for his first year while we lived in Mexico, strangers cooed over him and snuggled him up every day. They loved that he was Mexican by birth and that his eyes were bright blue, but they always remarked, “El es muy serio.” I would take tons of pictures just to get one of him smiling, and usually I would have to tickle him to get that. We used words like observant, intense and concentrating to describe him. It just never occurred to us that those were terms less commonly used with babies.

boy sitting in mom's lap
Lowe and her son, Caleb.

Once we moved back, I remarked to the doctor I had worried about his hearing because he never reacted to us calling his name. That he was completely terrified of the vacuum. That he loved his board books so much that he ate them — all of them — down to the spine. When he was upset, it would take over an hour to calm him down.

As the year rolled on, we noticed more. Caleb’s speech and walking were delayed. He could repeat movie lines but not individual words. He would repeat anything you said to him but never pointed and asked for things. His favorite toy was a cooler. He would go into tremors at loud noises but did not seem to feel pain when he hurt himself. He would run into furniture over and over again. Sometimes he would seem to lock up, and you would have to shake him to get his attention. And we would look these things up and convince ourselves he didn’t have all the symptoms of autism spectrum disorder (ASD), so we should just wait and see.

When he was 28 months old, we finally had our epiphany (or it had us). We went to a family gathering where there were oodles of kids, and since we didn’t know other children his age, we thought he would love it. But when he walked into the melee of boisterous, laughing children, he just laid his face down on the floor. We thought he must be sleepy, so we put him in a bedroom to nap. When we went to check on him, he was standing in a corner tracing on the window. We tried to take him back to the kids’ room, and he just laid his face down again. So I watched. And I finally realized he was actively avoiding other kids, he never answered to his name, he didn’t make eye contact, he didn’t “see” other people and he was completely isolated.

We called a pediatrician. She didn’t believe us, but thankfully, she did send us on to the Child Development Services Agency (CDSA). There, a team of amazingly gentle and caring people diagnosed Caleb as having mild-moderate autism and sensory processing disorder.

I somehow knew and yet was stunned at the same time. Terms like proprioceptive, vestibular, auditory processing, IEPs, occupational therapy and echolalia swirled around in my head trying to catch hold. And I was terrified. Would he graduate? Would he drive a car? Hold a job? Live on his own? And the burning question I still hold most important: Would he fall in love and have someone fall in love with him?

As a mom, could I do enough, could I understand, could I reach him? The world — and all the expectations you held in it for your child — changes at that moment and there is nothing you can do about it.

And the thing that no one tells you about is how lonely it is. How separate you feel from society because of the way it reacts to him, to you, to us. The stares, the nervous twitters, the extremely rude comments. Onlookers who judged you because your child had a meltdown in public and started hitting himself in the face. The parents who pull their children closer like your child is contagious. The people who say things like, “He doesn’t look autistic,” “He will grow out of it” and “I could tell. I knew there was something…” And then they realize they were about to tell you your child was “wrong.”

And the literal mother of all concepts that ASD is caused by something I ate, I did, or worse, that I didn’t do enough of. The friendships that dried up and invitations that disappeared. Him trying to understand the world and me struggling to help seemed unfair enough without everyone else’s uninformed opinions, indifference or disregard.

So I learned to speak out. To be comfortable sharing Caleb’s diagnosis and story. To be open about who he is and how difficult moments can be. To never, ever, ever judge someone else because our paths as parents and as families are difficult enough. To be a good listener and strong supporter of other families on the spectrum. To be honest enough to seek support when I need it.

Our journey has taught me so much about myself and so much about Caleb. It has taught me how to truly see my child as he is. That to reach him and to teach him, I have to meet him where he is.

And to think back to that day, I remember clearly how it felt when I stepped out of the CDSA with his small hand in mine and took a deep, dizzying breath. How I sat at the wheel afraid to leave, turning the car on but not over, and then hearing that small voice belting out “Sesame Street” disco songs. I looked into my rearview mirror at my beautiful, smiling child who wasn’t a diagnosis. He was just our son. And now, we knew we had a path to reach him. I smiled wide at him and turned the car over.

There are many excellent sites and resources for learning about autism. Here are a few that were helpful for my family:

Autism Society

Centers for Disease Control and Prevention (CDC) Autism Spectrum Disorder Page

If you know a family with a diagnosis, I feel the best thing you can do is give them opportunities to hug, to listen, to laugh, to cry and, most importantly, to share. With current autism spectrum disorder rates as high as one in 68 children, according to the CDC, I believe we all need to know how to support families already out there.

A version of this post first appeared on The Snap Mom.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? 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 Submit a Story page for more about our submission guidelines.

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