young boy looking up while lying on bed

Yesterday morning, I awoke to the sounds of quiet whimpers from the adjacent bedroom. My son, Leo, was lying in bed with the covers pulled up over his face and tears streaming down his cheeks. I crawled into the bed beside him, wiping away his tears and comforting him in whatever way I knew how. His dad followed, and all three of us laid in bed until the tears ceased and anxiety seemed to slowly be exiting Leo’s body.

It was a nightmare that caused his distress, I believe. Although, I can’t be sure. It is still one of the most heart-wrenchingly difficult aspects of this autism journey that I grapple with — not knowing why my child is upset and how to help him.

I find myself playing detective a good deal of the time, looking for clues and trying to solve the mysteries that are so often attached to my beautiful boy.

Babies are unable to express what they want or why they are upset through the use of words, so they do so, more often than not, by crying. As parents, we learn very quickly to check off the handful of basic needs generally linked to their discontent before further exploring: Are they hungry? Do they need to be changed? Do they simply want to be held?

Leo still has basic needs that he has difficulty communicating to us: Is he hungry? Does he have to go potty? Is he over-stimulated? Is he seeking attention?

Like parents of newborns, I, too, go through my checklist.

But Leo is not a baby.

He is a 6-year-old boy with rich and complex thoughts and emotions that he simply can’t fully express.

Yesterday was one of those days where the weight of this challenge seemed to fall heavily on all of our shoulders. Until Leo, in his own uniquely glorious way, gave his mommy a glimpse into that beautiful mind of his.

While the three of us sat together, we watched one of Leo’s favorites, “The Muppet Movie.” I glanced over during one of the last scenes of the film and noticed tears welling up in his eyes. Except unlike that morning, there was no fear behind them. They were happy tears, as he had clearly been moved by what he was viewing on the screen. I was moved, too, feeling every emotion through his tear-filled eyes.

And when the final scene began to play (a song and dance number that Leo adores), he grabbed my hand, looked at me intently and requested, “Everything is great?” That prompted me to sing along with the film.

And so I sang:

Everything is great.
Everything is grand.
I got the whole wide world in the palm my hand!

Leo’s own tiny hands clutched tightly to his chest excitedly, while he turned his attention back and forth between myself and the film, eagerly anticipating each new verse.

I’ve got everything that I need right in front of me.
Nothing’s stopping me.
Nothin’ that I can’t be.
With you right here next to me.

There will be challenging days to come. But those challenges will continue to make us stronger and help us to appreciate the love we have for one another — and moments like these where I’m able to connect with my child through a song and a movie that brings him so much joy.

Because no truer words could be sung.

Life’s a happy song when there’s someone by my side to sing along.

Follow our journey on Life With Leo on Facebook.


“So what is Adin’s special power?” a close friend asked me, straight-faced and well-intentioned.

I scrunched up my face. “What do you mean?”

She persisted. “You know, they all have something they are really good at.”

Crickets. And then it clicked. This was the “Rain Man” question! Dustin Hoffman portrayed an autistic man in a 1980’s movie called “Rain Man” that gave much of America its first glimpse of autism. Hoffman’s character lived a life ruled by routines and rituals from which there could be no deviation. He had difficulty making eye contact, engaging socially and was institutionalized. With all of these challenges, he had a special power. He was a savant and could compute complex calculations in his head.

I mumbled sarcastically, “Adin loves to spin the wheels of his toy cars. Oh, and he can also spin the wheels of his toy trucks. I don’t want to brag but he can spin anything that is spinnable. He has a talent for it and he is the best at it. Spinning is his special power!”

The world took a few more turns and another friend asked my wife the same question over coffee. Well aware of the snarky reaction I would get, I thought of Adin’s mastery of  jumping. He is a kinetic wunderkind. He can jump on the couch and off of it, from the tops of staircases to the hard ground below, into a pool and for hours on a trampoline. At jumping Adin has no equal. Jumping is his special power!

When Adin was born, we were a young family with a beautiful daughter, excited by life and the journey we were taking. Adin had other plans. He was diagnosed with autism shortly after his second birthday and is bringing us on a different journey, one we never expected to go on. We re-packed our bags to join him, and I discovered something on the way.

Adin is magic. With limited speech and a blinding smile, he communicates pure happiness. He gives unconditional love, hugs and a kiss on each cheek to those he cares about. He will introduce you to people you may have otherwise never met, like amazing teachers, medical professionals and caregivers working tirelessly to ensure Adin and others with autism and their families have full meaningful lives.

Adin can create a tent out of blanket and then watch a video underneath it and be at total peace. He taught himself to expertly dribble a basketball with both hands while running through the house. He will draw you in with his infectious laugh when tickled or doing something he knows will make you proud like finally putting his head underwater in the bathtub.

Adin teaches that small steps are accomplishments and must be celebrated. Happiness comes from little things like a ride in the car to get fries or an afternoon of swimming together. Adin forces me to take a break from my hectic day so we can watch TV, walk in the woods or play in the backyard.  And when I do, the light in his eyes shows just how proud he is of me, too.

So go ahead, I’m ready. Ask me about my son’s special power.

I am a so-called “high-functioning” autistic person. I have been diagnosed with Asperger’s syndrome (AS).

What exactly does it mean to be a “high-functioning” autistic person? I’m 28 years old, and to this day, I don’t know the answer to that question.

Does it mean to function better in your everyday life than your “traditionally autistic” peers?

Does it mean you are a genius who will change the world (Albert Einstein and Alan Turing are among the persons who supposedly had AS)?

Does it mean you can do more than most people with the same diagnosis as yourself?

When I’m at my lowest, my mom tells me I keep outperforming my peers all the time. When she’s not around, I tell this to myself. At first it was just a repetition of what I’d been told. By now, it’s become an instinct.

Deep down, however, I know that at worst it’s a lie. At best, it’s a half truth.

As many people with AS, their friends and their parents know, the capabilities and mental fortitudes of those diagnosed can differ wildly from person to person.

Myself, I think I’m moderately successful compared to my “highly functioning” peers. I have a bachelor’s degree in journalism. At the moment I’m in the first year of another bachelor’s degree, this one in Russian language. Because of circumstances surrounding past internships, and less media jobs, getting a paid job as a journalist has proven to be next to impossible. However, I’ve had a couple of stints as a journalist for student magazines, and in the process I’ve met a lot of interesting persons. I’ve had experiences and conducted interviews I’ll remember for the rest of my life.

I’ve traveled to 22 countries in Europe. I’ve also been to the U.S., South America and Russia. I’ve written two novels, and I dream of finding a publisher willing to publish them.

However, compared to my non-autistic family, the people I grew up with and the people I surround myself with every day, I feel like a failure on almost every level.

I’ve never once held a paid job. I’ve only ever had one girlfriend. I do not have an extensive social circle, and while extremely grateful for the friends I have, I have to work twice as hard as everyone else to maintain them. I have bouts of extreme anxiety and depression, and it seems unlikely I’ll ever be able to get rid of them.

I’ve met people like me, mostly online, who are only too happy to label their condition as a gift. For me, my AS can feel like a burden when it does not give back what it has taken away from me. Intellectually, I know that given my circumstances, none of these can really be considered “failures.”

But unless I can manage to accept me for what I am, or perhaps more importantly, who I am – that is, a person with unique challenges, I know I’m bound to hit a wall in the near future.

One of the worst bullying experiences I’ve ever encountered happened almost 10 years ago, but I can still remember it like it was yesterday…

I was in high school and, while in the staircase after recess I was having a conversation with one of my friends about girls. He was telling me about a date he was recently on while I was sharing about wanting to find a relationship of my own one day. It was something I often daydreamed about. It was something I had wanted ever since starting high school.

While continuing our conversation one of my peers overheard our conversation and decided to butt in. She interrupted, and, in a condescending fashion, said I would die alone because I’d never be able to understand other people. That was one of the most gut-wrenching moments of my life. As silence consumed and I blacked out the world for a few minutes, I thought about an incident that had happened just months before, which made this situation even worse.

I had fallen into a trap by one of the popular girls in our high school who had told me she’d like to be my girlfriend. I told her I’d love that and at that moment thought we were in a relationship. Just a few days later, while asking her if she wanted to go on a date, she, in front of her friends, told me she was only kidding about wanting to be in a relationship with me. She laughed in my face while I walked away, fighting
back tears. My heart felt like it was beating out my chest.

I thought about saying something to a teacher but felt too embarrassed by both situations. At the time I thought they would laugh at me, feel sorry for me, pity me, I just didn’t know. I thought I was a loser, and for months after I had considered a life where I would have to embrace that I’d never be in a relationship, never get married, and never have a family of my own. I thought to myself, “Maybe I’ll get into
college and get a great job one day. Life won’t be that bad.”

Going into my senior year though, I was reminded of advice from a family member who said, “You can’t pass the time living your dreams in your sleep. You need to live
those dreams when you are awake.” I wanted to start my final year of high school off on as positive a note as possible. I went into my senior year as the president of our student council, captain of our varsity basketball team and lead in our school play.

The one moment that stood out the most that year though was when a month and a half in I started dating a classmate. I was in my first relationship. I was happy.

Today, even though I’m single as a 28-year-old adult on the autism spectrum, I’ve dated several women and have grown to be more confident in the dating world.

For those reading this I hope your loved ones, regardless of having autism or not, will be able to find someone out who will be there for them. Whether it is a relationship or even just a friendship… find those people who share similar interests to your loved ones, and never give up hope.

Don’t let naysayers or the bullies of the world hold you or your family down. But also remember, some of our loved ones do enjoy being alone at times, and that’s OK too. For those who ever feel alone though or just need a friend, I’m only a message away via my Facebook fan page.

October is National Bullying Prevention Month. Autism Speaks partnered with the National Center for Learning Disabilities, Pacer’s National Bullying Center and Ability Path to start a Special Needs Anti-Bullying Toolkit to help stop bullying. You can learn more about the kit here.

A version of this post appeared at

Image via Thinkstock.

I am one of those people who truly loves Halloween — not the spooky, scary side of the celebration, but costumes… oh yes I love costumes. Give me a reason to dress up, whether it’s halloween or a theme party, and I am 100% committed. When I was a child, I bugged my parents for months leading up to the big day of October 31 by evaluating every possible costume I could potentially dress in that year. By the time the actual date rolled around most of my family was exhausted by my obsession with perfecting just the right attire for the big night.

Like so many parents, I looked forward to sharing these experiences with my own children. When I had my first son, I was elated to be able to dress him up in costume; he was an adorable 4-week-old pirate, a 1-year-old lobster and a 2-year-old Cookie Monster (even if he wouldn’t keep the head on). It wasn’t always easy figuring out how to maneuver a baby into these ridiculous ensembles, but the pictures are treasured, and my love of halloween, costumes, and trick-or-treating remained.   Then my son turned 3, and it all came to a screeching halt. 

While we had been engaged with early intervention and various therapies since my son was 18 months old, it was right around his 3rd birthday that we received the official diagnosis. Our son is on the autism spectrum. Nothing had changed yet, everything had changed. Many of the simple day-to-day ritual or family outings that most people take for granted were already not part of our norm for a variety of reasons, including our child’s sensory issues, meltdowns or challenges in large groups of people. Yet somehow the notion that Halloween would no longer be a cause for fun and celebration was simply not something I had considered.

That Halloween when my son was 3 we just barely got him into a t-shirt that resembled a pirate costume. He had the hat, eye patch and sword in the wagon next to him, but it was enough to feel as though we were a part of the day. Then last year, when he was 4, it became apparent that my grand plans for family-themed costumes and our first opportunity to attend a halloween parade at his pre-school were simply not going to go as planned, or at least not according to my expectations. The parade included every grade of the elementary school from pre-k through third, and it was wonderful. The kids looked great, the parents were out in full force, cameras were flashing at every turn, and the school did a wonderful job. When my son’s class came out I waited with anticipation. I had not been able to convince my son to wear his costume to school but sent a note to his teacher that morning explaining it was in his backpack and that I thought there was a good chance seeing the other kids in his class dressed up would make him want to participate.

As his class entered the parade every single child was in costume… except my son. He was wearing an black Adidas running outfit that was to be the underneath of his costume. I could feel or at least imagined I felt other parents wondering who the poor kid was whose mom forgot about the parade and costume. I could barely choke back tears as I realized yet again how different our experience was compared to other people’s, but I proudly stood by clapping and waving and taking pictures of my little guy.

Needless to say the actual night that followed also did not go according to plan; my themed family costumes of Ghostbusters with our younger son dressed as the Stay Puff Marshmallow Man did not appeal to my older son. We tried again and again to no avail, and by the end of it he was so out of sorts (and so were we) that we never even made it out to trick-or-treat. This was not my finest moment as a parent. I had focused so much time and energy on creating a Halloween experience that would meet every Pinterest expectation that I forgot to focus on what was really going on in the mind and world of my child. He doesn’t like costumes, he doesn’t like to pretend he is anyone other than who he is, he loves imaginary play, but we can’t call him Captain Charlie or Superman because then everything goes downhill. I may not get it, but I can and have certainly learned to accept it.

The following Monday I received several pictures of the school parade via our parent email with countless notes from his teachers, aides and therapists all telling me that due to his sporty retro-sweatsuit combined with his good looks they all decided he was dressed as Ben Affleck from “Good Will Hunting.” I laughed and cried with these notes because it humbled me and made me realize that how we choose to look at a situation and how we choose to celebrate regardless of what is the “expected norm” matters more than what we think should happen.

His teacher told me she was so proud of how my son had walked in the parade, how he stayed with his class and held hands with his two friends the entire time. He didn’t freak out at the number of family members crowding the area or cheering and yelling. He simply stayed with his group and smiled the whole time, and he had fun doing it.  

So here we are in October yet again. Normally I would have started thinking about costumes at least a month ago, but this year I have decided to step back and see what happens. My son told me he wants to be an astronaut, and I think that is great. We will go pick out a costume together, he may or may not wear it and we may or may not make it out to trick-or-treat. If we make it out that night and he is not in costume, I will not worry about what people think or if anyone is annoyed at giving candy to a child who is not dressed up or may not make eye contact. None of it really matters to me any more. The realization that we are creating our own family memories and traditions that may look nothing like what we thought they would but are uniquely special in their own right is all I need.

Image via Thinkstock.

Sending a vulnerable child off to his or her first foray into the larger world without the shelter (OK, constant hovering) of a loving parent nearby can be emotional for any family. I feel especially vulnerable sending a child diagnosed with autism spectrum disorder (ASD) into a new environment where he, and I, will be tested in ways that we have not yet imagined.

I will admit to possessing a lot of baggage on this topic. We lack proximity to an extended family support network, so prior to the start of kindergarten, I could count on my fingers how many times my oldest son had not eaten lunch with me, much less spent the night without me. For the few times a week he had morning preschool, I barely had time to complete the grocery shopping before picking him up again. I was his interpreter, his defense, and, maybe, we were one another’s means of hiding, too. Our normal was never called into question. This was our routine — our small life.

Despite my insecurity about sending him off, pragmatically, my spouse and I made lists of pros and cons. We toured and studied private, charter and public local schools. I brought up homeschooling as an option. School research was our actual hobby for a matter of months. My diligent husband created Excel spreadsheets to calculate our votes with a statistical margin of error. And we came back repeatedly to the answer that our school of choice was the best fit for him, and the best fit for our family. Somehow, as the start date came nearer, that sense of calm ration deserted me.

The early childhood support team we clung to for the past two years changed over to an elementary team fielding a much larger caseload. That first team had walked us through the initial evaluation process and saw me cry in the car before driving away. They watched as we learned to parent: teaching toilet training and enforcing the wearing pants out of doors. The new team may certainly be just as or more proficient at their jobs, but saying goodbye to our trusted support team was challenging.

There was a different aspect of parent presence in preschool. If we arrived 15 minutes late due to an early morning meltdown, no explanation was required. Because our preschool had no busing option, I recognized the students and their caretakers by sight, if not by first name. Asking for patience, and sometimes some leniency, was less of an issue when it impacted one partial-day classroom.

We attended open house to meet the teacher. I took our gaggle of children for trips to practice the school bathrooms and to try out the playground. Nearly a month in advance, we were counting down the days and doing everything possible to make the transition as smooth as possible: countless library books about school, a paper chain countdown, personalized school supplies, a list of acceptable lunch options. We let him plan his entire first day of meals and snacks, and there were not nearly enough vegetables. 

On the first day, I was numb with fear, excitement and pride. Walking away from him was one of the hardest moments of my life. We made it through those first few days where he and I came home yelling and crying and trying so desperately hard to adjust. He didn’t eat, drink or use the bathroom. I didn’t sleep. I read up on the rules and manuals; he played Legos in isolation. We gave ourselves more time, and I wrote a lot of emails. I nodded and put on a brave face.

I am starting to know his new support team on a first-name basis. He has moments where he is overcome with excitement about his new library card or he found the sticker I put in his lunch box. One day, he came home and spoke about another child by name! Granted, this classmate had sustained a broken arm during recess, but I was so encouraged that he had connected with another person that I enabled the making of a “get well soon” card.

There are glimmers where a new baseline is emerging, where he and I have come to an equilibrium once more, a balance of getting by, and some hard times, and having fun.   

And then today, this came home:

school project about best friends for kindergarten class

My gentle and loving 5-year-old boy wants to complete the picture with a drawing of the stuffed puppy he has slept with since he was 1. I am so scared. I have to trust that the other parents, parents of children I have never met and whose names I do not know, are putting in their work, too. How will these other 5- and 6-year-olds respond to a boy whose best friend is a stuffed animal? Will they see an opportunity to be a friend to him?

Letting go of control and being willing to risk it, to trust my boy to his own limits and to trust others with his heart, is my experience of kindergarten. We can do this together.     

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