Most People Don’t Realize My Son Has Autism. I Want to Change That.

Aedan was our first child, the perfect, beautiful baby I had dreamed of. He was a “high needs” baby who struggled with oral motor issues and found sleep difficult, but he evolved quickly into an easy-going and inquisitive toddler.

By 2, he knew all of his letters and could count to 20. By 3, he was using words like “hypothesis” and telling everyone that he wanted to be a paleontologist when he grew up. By 4, Aedan was reading to his preschool classmates and correcting his teacher in circle time. He loved playing with adults and children alike, and if you had suggested to me that he would ever end up with an autism spectrum diagnosis, I would have laughed and called you delusional.

Just before his fifth birthday, Aedan began to develop anxiety and what seemed to be OCD-like symptoms. His hands were perpetually “sticky” and he washed them incessantly. He refused to buckle his own seatbelt (it was “sticky,” too), to walk on grass, to enter public restrooms (the sounds of toilets flushing and hand dryers were overwhelming) and to touch paint, shaving cream or Play-Doh. When things were “different” than the way he imagined them to be, he got upset or angry or panicked.

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Our diagnostic process was frustrating to say the least. We were bounced from pediatrician to counselor to psychologist, none of whom seemed to be able to put their finger on what might be the core issue. One professional even suggested that I was projecting my own anxiety onto Aedan and that there was no real issue at all. Finally, a new pediatrician asked me, “Has anyone ever considered autism spectrum disorder?” I stopped in my tracks. I’m fairly certain my mouth dropped open.

I was certain my child did NOT have autism. Autism was the nonverbal child I used to babysit. Autism was my friend’s daughter who could not enter a store without a meltdown. Autism was the student in my class who gave me a huge hug every morning and sat by my desk to chat but could not bear to have a conversation with his peers. Autism was NOT my bright, bubbly, social little boy… or was it?

The next few months were a whirlwind of evaluations and doctor’s appointments. I began to see the little things I had glanced over for so long… Aedan not looking me in the eye was not just because he was occupied. His sensory anxieties were not just a phase. His resistance to things outside his own schema was not a preference… it was an inability to process.

We received Aedan’s diagnosis last March. By that point, the words “autism spectrum disorder” were not a surprise. I had prepared for them and in a way already accepted their meaning. The diagnosis was almost a relief. It meant we could begin to heal and find help. It meant our insurance would have to pay for occupational and speech therapy. It also meant that my whole world had changed.

A friend of mine whose daughter was diagnosed with ASD years before my son told me, “It doesn’t change who he is.” When I repeated this to our developmental pediatrician, she smiled and said, “Yes… but in some ways it does.” At the time I was confused and almost insulted. In some ways, I think I had viewed the diagnosis as the end of this difficult journey we had been on. I was soon to learn that it was really just the beginning. I left the office with a stack of referrals and recommendations.

In the weeks and months that followed, I learned to be an autism mommy. I learned that while my son is still the same bright, bubbly boy he has always been, sometimes I need to reframe the way I look at him. When I am frustrated that he is not listening, I need to remove distractions instead of demanding more attention. When he breaks down because the day is not going as planned, I need to offer tools and help him find a way to regulate himself. When he is turning somersaults on the couch, I cannot expect him to just sit still.  I need to offer an alternative that can provide similar input. When he does not understand sarcasm or metaphors, I have to find a way to patiently explain.

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In so many little ways throughout the day, I have had to retrain my own brain to remember that Aedan’s interprets things a little differently.

Aedan is now 7 years old. He is passionate, loving, kind and blindingly intelligent. He can tell you anything you’d like to know about just about any dinosaur or animal ever in existence and gets teary-eyed over the idea of trees being chopped down. He loves Elsa and made it his goal to meet every Disney princess at Disneyworld last year. He can follow any Lego instructions in existence and build his own breathtakingly imaginative creations as well.

He is the best big brother I have ever seen and loves his family and friends with an intensity that blows me away. His diagnosis does not define him… but it does shape who and what he is.

Most people who interact with Aedan on a casual basis have no idea that he is not a neuro-typical child. He tends to come off as a little energetic, or slightly immature, or a little “quirky,” but unless you happen to witness a meltdown, Aedan does not fit what the majority of the world views as “autism.” I want to change that.

Autism is not one thing. The autism spectrum has a million different looks, thousands of colors and shades. Aedan is a snowflake. A beautiful, intricate, amazing, AWESOME unique being.

There are millions of snowflakes like and unlike him around the world, each their own combination of strengths and challenges.

I love a snowflake. Do you?

This post originally appeared on “Finders Seekers.”

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Why the Time Has Come to Start Saying ‘Autisms’

The time has come to celebrate Autism Acceptance/Awareness Month in April by adding an “s” to “autism.”

Granted, the word “autisms” does not roll easily off the tongue. (Really, it just puckers at the end.) But I have big hopes for that extra “s.”

First off, it codifies into our language the current science. Namely, that there is no one cause of autism. There are causes. The science is far from set, but many recent studies find many potential causes — be they related to myriad genes, environmental triggers, or both.

Consider this quote from Dr. Stephen W. Scherer of The Hospital for Sick Children in Toronto explaining his team’s findings that even the autistic siblings they studied had different autism-related genes in most cases.

We believe a better term to use is ‘the autisms,’ or ‘the autism spectrum disorders’ (that is, plural),” he told Reuters Health for a January 28 article. “There are many different forms of autism.”

More importantly, that mighty “s” reflects the amazing diversity among people with autism. A popular slogan in autism communities is, “If you’ve met one person with autism, you’ve met one person with autism.”

The popular thinking is that people with autism fall somewhere on a linear continuum from “high-functioning” autistics or people with Asperger’s syndrome, who have pretty good speaking skills, high intelligence and poor social skills, to those with “low-functioning” autism, who are non-verbal, unable to relate to others and have lower intelligence.

But given the augmentative communication devices that enable them to express their high IQs and connect to others, people with autism are proving that linear thinking wrong. Autisms are not expressed in a line, but in constellations.

“Autisms are not expressed in a line, but in constellations. Here’s one of the stars.”

Maybe, if adding an “s” to autism gets us to accept a diversity of causes and expressions of autisms, we can move beyond the notion that one therapy or educational support can help all kinds of people with autism. Among the rifts in our communities are the conflicts between proponents of various types of therapies, each claiming that their way is THE way to help.

So, if we accept the heterogeneity of autisms, perhaps we can accept that each person with autism needs his or her own mix of services and supports, and we can ditch “one size fits all” approaches.

You may have noticed that I’ve pluralized “community” as well to describe people with autism, families, scientists, educators, caregivers, therapists and the like because we are not one community. In many ways, we are at war with ourselves. And we are waging more than one battle.

Some battles rage over causes (genes versus vaccines, the most inflamed of late), others over therapies, more still about diagnosis numbers (epidemic versus reclassification versus ever-changing diagnostic criteria).

One unifier in all these battles is anger — anger I believe to be born of the uncertainties of autisms. We don’t know the specific causes. We’re still at a trial and error phase in our approach to the therapies, medications and teaching methods that really help people with autisms. And gaining access and funding for the things that do help means maneuvering through the murk of insurance and government bureaucracies, a process that leaves even the most level-headed person infuriated and ready to rage.

Which brings me to my last and most important hope for adding an “s” to autism this April. I wish that if we could accept the notion of autisms, we could learn to respectfully disagree with each other and stop trying to prove each other wrong with the vitriol and zealotry I so often read in comments sections in blogs and articles online.

You may have also noted that I called April Acceptance/Awareness Month, because some call it “Autism Awareness Month,” while others call it “Autism Acceptance Month.” Some are championing the idea of “Autism Respect Month,” which I like best of all because it champions the idea of treating people with autism with respect and dignity.

Of course, I’d prefer “Autisms Respect Month.” We need that extra “s” to remind ourselves that we need to respect the diversity among us and treat each other with dignity if we are to expect the same from the world at large.

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My Positivity Failed Me Today

At heart, I’m a glass-is-half-full type of girl, although admittedly, I’ve had phases when the glass was half empty – and sometimes even bone dry.

Still, I think my propensity to be positive is what has kept me mostly sane on this autism journey. I try to keep my essays about Barrett positive, because I loathe the thought of anyone feeling sorry for us. But sometimes, sometimes I can’t conjure up my inner Pollyanna.

I’ve been thinking about my Bear-Bear a lot lately. We recently had his annual IEP meeting, and it was good. As I mentioned last week, he’s also miraculously become a member of his school’s track team. I’m so freaking proud of this kid, so much so that I occasionally feel guilty about it. The accomplishments of my other three children rarely garner the crazy enthusiasm that Barrett’s do.

This past Saturday was Barrett’s autism anniversary. 12 years ago we received the diagnosis. 12 years – it’s unreal.  I can no longer claim it’s all just a dream. The diagnosis wasn’t a surprise, but that didn’t make it any less devastating, life-altering, or dream-crushing.

I consider the four years after the diagnosis as the dark ages. Keeping a positive outlook was difficult. With the exception of my daughter’s birth, I walked through my life with a very heavy heart. I was wounded and recovery didn’t feel likely. But recover I did. I’m not the same person I was pre-diagnosis, but I no longer consider myself broken.

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I have new dreams for my son, ones that are more aligned to who he’s come to be. To coin a popular phrase, I’m hopefully optimistic about his future, because he constantly surprises me. 12 years ago, I believed that with intensive therapies, Barrett would “recover.” I didn’t worry about the future too much. I focused on the present.

By the time my son got to kindergarten, reality began to dawn for me. I accepted that he would have a life very different from the one I’d originally imagined. I grieved accordingly, and reconciled myself to our fate. That doesn’t mean I’ve given up on my son – far from it. I still have high expectations for him, but I made the choice not to dwell on what could have been.

Six years ago I never would have thought my son would play or participate in any sport that wasn’t supported by an organization like the Miracle League or the Special Olympics. And that was okay. I’m a proud and hyper cheerleader at the Special Olympics each year. So I’m thrilled (and honestly, scared to death) that I’m going to be able to cheer for Barrett when he runs his first track meet, on a team that is not specifically for special kids.

Why am I rambling on? Because my positivity failed me today. I don’t know if it’s because of all the autism awareness thinking I’ve been doing, or the looking back that I’ve indulged in because of the anniversary. My stumble down the rabbit hole surprised me. Lately, I’ve been thrilled about my Bear-Bear, but there it was: a melancholy-filled moment of weakness. A feeling of regret so strong, that it really did hurt my heart.

This morning, as I watched Barrett walk up our driveway to his bus, I experienced a pang of grief, almost like a foreboding, which is something I haven’t felt in a long time about Barrett. He was dressed in a “GQ”-like manner (because of course I picked out his clothes), and sporting a new haircut. He had his backpack on, and over his shoulder he carried a duffle bag filled with the running gear he would need for track practice after school.

Bear usually gallops to the bus, because he loves going to school. But this morning, he sort of sauntered. He was grasping the shoulder strap of his track bag, so it wouldn’t slip off his shoulder. A wave of nostalgia slowly washed over me and started to pull me back. In that moment, he appeared so cool and confident, and I had a flash of what might have been. Of who he may have been, if not for autism.

I hate self-pity. God, it’s a useless emotion and an obstacle to living a happy life. But man, sometimes, I just can’t avoid it.  But that doesn’t in any way alter the love, gratitude and pride I have for my son today. No way.

A longer version of this post originally appeared on “The Latchkey Mom.”

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2 Lessons We Can All Take Away From My Church’s Most Valuable Volunteer

Nearly five years ago, on May 7, 2010, Mary Mother of God Church and the entire Hillsborough, New Jersey, community lost a great man, Troy Conshue. I first met him in 2005. 

Excuse the cliché, but to know Troy was to love him. If you met him once, he was forever your friend or, as Troy always put it, your “buddy.” He had no vices.

Troy was not a man of great athletic prowess, intellectual ability or financial means, the standards by which the world all too often measures success. But as MMOG’s Father Lance McGrath aptly noted, Troy was someone much more important than a sports hero or a great scholar – he was a shining light on a hilltop who inspired all he met with his incredible capacity for serving his fellow man.  


No, Troy did not win any MVP awards for his exploits. But he was twice named Volunteer of the Year — once for his work with the Ironbound Ambulance Squad in his hometown of Newark and later at MMOG, where he was awarded an MVV trophy – Most Valuable Volunteer. He was a tireless worker. Well, almost tireless. Troy would sometimes take a well-deserved catnap amid the many long hours he spent volunteering. During our church league’s basketball season, it was not unusual for Troy to spend 12-hour days doing everything from selling candy to sweeping the gym floor to hawking raffle tickets, fueled only by his unquenchable desire to help — and several Gatorades and hot dogs.

Troy did not write any great scholarly papers or give any brilliant lectures. Yet he was a great teacher, someone who taught by example. His lessons were the best kind – easy to understand and relevant to everyone.

Lesson 1:  When you need help, just ask.  

Troy understood it was OK to ask for help. He didn’t need much, but when he did need something, he was never shy about asking. If he needed a ride (as he frequently did, for he always had some volunteer work to do), he would call as many people as it took to get one. Troy had tremendous self-awareness and understood and accepted his limitations. As a result, unlike many of us, he didn’t see asking for help as a sign of weakness. A smart man.     

Lesson 2: When you want to help, don’t wait to be asked – just start helping.  

Troy didn’t need an invitation to help; he simply jumped in with both feet and got right to work. And whatever he did, Troy did it always to the best of his abilities and always with a big, ever-present smile, a virtual billboard for the adage, “’It’s better to give than receive.”  

Troy’s favorite volunteer activity was running the scoreboard and clock for basketball games. Grade school, high school, “over 30” games — he did them all.  He’d sometimes work a dozen or more games a week. An often stressful job (so much so that volunteers are hard to come by), Troy took tremendous pride in his work, and he never missed a beat… or a whistle. He knew all the rules of timekeeping (schooled, no doubt, by his brother, Tyrone, who sometimes officiated while Troy was on the clock) and was quick to pass on his expertise to new volunteers.  While the occasional clock malfunction brought consternation, frustration and puzzlement to the faces of officials, coaches and fans, Troy only smiled, ambled across the court and fixed the problem. 

There’s so much more to tell about the remarkable Troy Conshue: his love of the New York Giants, how children, including his beautiful niece, Ericka, especially loved him, how he never once complained about his many health problems, his phone calls in the middle of the day just to tell you how happy he was. Troy simply lived to serve others, and all he asked in return was your friendship. A generous man.

Troy’s final weeks were not easy. But he fought the good fight to the end, ran the race to the finish and always kept the faith. Five years later, Troy, know all your many friends, young and old, will always honor your memory by their own acts of charity and will forever hold a special place in their hearts for their best buddy.

Each year Mary Mother of God CYO awards nondenominational scholarships to local high school seniors who have given back to the community through volunteerism and acts of charity. In the 2010, the scholarship was renamed in honor of Troy. Donations may be made to the MMOG CYO – Troy Conshue Spirit Scholarship Award, 157 S. Triangle Rd., Hillsborough, NJ 08844.

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10 Things People With Autism Want You to Know

In honor of Autism Awareness Month, I wanted to share with you some things we, as people with autism, hope you take from April.

Here are 10 things people with autism wish you knew:

1. Not all people with autism are the same. If you’ve met one individual with autism, you’ve met one individual with autism.

2. We’re not all are math geniuses (i.e., “Rain Man”).

3. Being unable to speak doesn’t mean you can’t communicate. About 25 percent of people with autism today are nonverbal, yet they can be highly intelligent (like best-selling author Carly Fleischmann).

4. As much as you spread awareness for autism, we also want you to spread autism education. We want to be accepted for who we are and not seen as a label.

5. “Normal” is really only a dryer setting. Most of us are unique and that originality is a beautiful thing in our community that should be acknowledged.

6. People with autism are smart and talented. It may not be noticeable all the time, but all of our minds work in different and beautiful ways.

7. To those on the “high-functioning” end of the spectrum, please don’t say things like, “I could never imagine you having autism” to us. Autism is a spectrum disorder.

8. Kids with autism will become adults with autism. As much as we’d love to emphasize children on the news, we want you to know that autism is a lifelong disorder. We don’t want to be forgotten when we become adults, because we don’t grow out of autism.

9. If you see me in a public setting and I’m me rubbing my hands together or leaning back and forth, please don’t look at me like something is wrong. I ask for empathy in these situations as doing these things make me feel more comfortable.

10. Autism can’t define us. We define autism. This is the truth for everyone on this planet, actually. No one thing should be able to define us as people — we define ourselves. I’ve never wanted to be known by a label. More than anything, I want people to see me as Kerry.

So this April, realize that people with autism are here for a purpose. We all are meant to shine in this world. I hope we are given the opportunities to progress and live the best lives possible.

Just like anyone else.

A version of this post originally appeared on

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The Moments That Assure Me My Daughter’s Stepsiblings Will Always Love Her

Screen Shot 2015-04-02 at 5.27.46 PM When I met my husband and found out he had two older children, I was nervous. Would they accept my daughter? Would they think she’s weird? Would they be upset when we had limitations as a family because my daughter has limitations? Could they love another kid as a sibling or even want her to be part of their family? Blended families are hard. Blended families with a child with special needs is mind boggling at times.

Fast forward a couple years.

My 13-year-old stepdaughter steals special moments with my daughter and makes sure she’s safe and happy. They dance together, they chat and they have this special little thing they like to keep to themselves. I love to “accidentally” sneak up on them sometimes.

My stepson, oh man. I don’t have words. He calls just to check on her. They hang out every second they can while we are all together. He sticks up for her and loves her so deeply and openly it melts me to a puddle of mush.

I am lucky. We are lucky. Everything is daisies and roses most days, but even on the worst days it’s still one of those cheap carnations you get for your prom date.

Just a few weeks ago my daughter had surgery, and you know what we got in the mail from my stepkids and their mom? A beautiful blanket with pictures of all the kids printed on it, and every awesome “Frozen” thing they could find. If that doesn’t scream “blessed,” I don’t know what does.

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The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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.

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