The Moment I Suspected My Child Could Be on the Autism Spectrum

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My son, Donovan, and I held hands as we walked to our neighborhood park. I talked and he listened and smiled. It was a gorgeous day. The sky was blue and clouds were spread out here and there across the sky. It was a hot day, but not the type of humid that makes you feel sticky, which is expected for the middle of summer in Chicago. I remember every detail of that day because I feel it changed our lives forever.

Although the playground was still out of sight, the abundance of giggles and playful screams told me there were more than a few kids at the park. I started to get a little nervous. Donovan had been diagnosed with an expressive speech delay at 2 years old; he had difficulty holding conversations, which made playing with kids his age a challenge. Some kids wanted to know why he didn’t talk the way they did and some had even laughed at him when he repeated the sounds they made and it made him sad.

I wanted trips to the park to be just as fun for him as they were for me when I was little. I took him out to play before noon hoping there were fewer children around, but we were facing a park full of climbing, running and jumping kids who’d all want to talk and play.

Donovan walked through the park gate, sat down on the bench and stared at his shoes. I knew I could either take him home or help him face his fears — so I encouraged him to play.

He wandered over to a group of kids who were in the middle of a game of tag and within minutes he was running back and forth chasing and being chased. He was having a really good time. Then the game stopped. One of the older boys wanted to play soccer. He set up cones, grabbed his ball and asked if my son could play, too.

Donovan joined the game but he had a difficult time. At some point the kids stopped their game and all eyes were on my son. I knew something was wrong.

Many of the strategies I was using to help my son communicate came from websites for children with autism, so I was becoming increasingly familiar with the traits. I looked at my adorable little 4-year-old son and began to suspect autism could explain his difficulty communicating and interacting with others.

I believe my son experienced his first meltdown caused by sensory overload. I knew it was best for us to leave. We went home and I gave him a bath. After, he sat down to play and within minutes had fallen asleep on the floor.

As he slept, I called hospital after hospital in hopes of getting him in for a developmental evaluation. I was told over and over again there was a waiting list and the earliest appointment was 6 months away. Thankfully, a sympathetic speech therapist found a way to squeeze my son in her schedule just a few weeks after the episode in the park. Occupational and behavioral therapy were not as easy to get into.

My son was diagnosed with autism just after his 5th birthday. I can’t help but wonder how different his life would have been if he’d been diagnosed earlier. Now, as I reflect on the years leading up to the moment at the playground, I can see the subtle clues I missed. Things like not crying after an especially hard fall, spinning in circles without getting dizzy or the cute but unusual way he’d occasionally squint his eyes while walking around the room. These were possible signs of having a hard time adjusting to the environment around him or craving stimulation, which can be seen in autism.

I can’t begin to count the number of people who told me to wait to seek out services for my son; they thought he would eventually grow out of his behavior and one day speak on his own. In my opinion, waiting is not an option. I believe early intervention helps put children on the path to success. As a result of the services he’s receiving, my son is learning how to manage impulses and communicate effectively. Today he’s a bright 7-year-old who loves school and enjoys playing with other children at our neighborhood park.

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Photo credit: Rebecca Sinclair

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Legoland Florida Unveils Sensory-Friendly Features for Visitors on the Autism Spectrum

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To make its theme park more enjoyable for everyone, Legoland Florida is implementing a number of changes that will make the park a better place for parkgoers on the autism spectrum. Last March, the park announced it was partnering with Autism Speaks to make a number of sensory-friendly additions to its Winter Haven, Florida location. This April, as part of Autism Awareness Month, the park will unveil those new features.

Autistic visitors will now be able to take advantage of the theme park’s new “Hero Pass,” a free pass that allows those with autism and their families to skip the line at popular attractions. The park will also feature multiple quiet rooms stocked with noise-cancelling headphones, weighted blankets, sensory-friendly toys and tables where kids can play with Legos.

Children with autism can also utilize social stories created by the park – illustrated stories designed to walk visitors through rides and other park attractions so they know what to expect. Legoland is also training its new employees, known as “model citizens,” how to interact with guests on the autism spectrum and their families.

Autism Speaks applauds the efforts of Legoland Florida Resort to provide special accommodations so that guests on the autism spectrum can maximize their park experience,” Karen Bacharach, senior director of Autism Speaks, told The Mighty.

Those interested in visiting Legoland, and living in Florida, can get discounted tickets through the North and Central Florida chapter of Autism Speaks, The Huffington Post reports.

Photo Credit: Benjamin Peacock/LEGOLAND Florida Resort

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This April Accept My Family and My Son on the Autism Spectrum

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April is autism awareness month. I hope I spread awareness daily through my stories of home life. I don’t want you to wear a specific color or donate to a cause. What I do want you to do is accept my family norm and learn from our stories.

Autism became most apparent to us when it entered our lives in October of 2010. Gabriel was 18 months at the time and began to regress in many ways: speech, motor activity and eating. In hindsight, signs had been there before, but he is our first child so how could we know? We called Early Intervention and soon found out about his diagnosis. I adore my son. He has autism and he is like no other being in the world. I’ve never seen a more loving, sweet, kind, well-behaved child. His mannerisms are gentle and he seems generally happy to me.

Do I want a “cure” for his autism? No. But I do want his life to be easier. I want him to be accepted, to be welcomed, to not be discriminated against. Watching my son’s delight as he witnesses other kids having fun is pure joy. I believe he simply wants to be.

I’m tired of being told, “Nah, it’s not because he has autism.” Or being told his therapy appointments or specialized activities are “excuses to turn down other things.” I won’t go into detail about the amount of therapy and understanding a child on the autism spectrum might need. These are needs, not excuses.

When I tell you my son has autism, please don’t say, “I’m sorry.” Why should you be sorry? I am not sorry. I adore my son and I am proud of him. Don’t say words like “normal” or the “R” word. Don’t say, “My child can’t do that either,” assuming challenges are easy to overcome. And don’t tell me, “He’ll grow out of it.” It? A lifelong developmental disability?

Look at my son’s abilities. He is authentic and genuine and shows no guile. He is gentle and caring — he shows empathy and love. He understands everything. He is smart, reads at 4  years old, can make his point using different forms of communication. He even ice skates and plays like other children. My hope is once you meet and know Gabriel, your view of autism will be forever changed.

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Thinkstock image by DragonImages

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Autism Awareness: Be Aware of Our Existence

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I spy with my little eye, something beginning with AA.

Not Alcoholics Anonymous. No, not the Automobile Association. I’m talking Autism Awareness.

In the run up to Autism Awareness Week and Day and Month and Millennia, I’ve been thinking about what I really want the world to be aware of.

Most people have heard the word “autism.” They’re aware it exists, but that might be about it.

Even those who have autistic family members might not recognize the adults in their midst. No, I don’t look like your child, for much the same reason you don’t look like my 3-year-old. Autistics grow up, too. An adult autistic — no matter how verbal or not — has still had a lifetime of acquiring skills and learning and developing, that a child has not.

When experts talk about autism — trainers at work, speakers at conferences  — they often seem to forget there will be autistic people in the audience. We become “they.” We are “othered” by the very people who are supposed to know the most about us.

I don’t want you to just be aware that autism exists; I want you to be aware of our existence. We are the mothers at the school gate, the co-worker in your office, the woman who sits at the same seat on your bus, the man walking his dogs.

We are not an alien species; we live among you.

We’re your friend who speaks passionately about the things she loves and might be terrible at keeping in touch regularly. We’re the coach who is obsessed with bringing the best out in everyone. We’re the paramedic who solved your issue. We’re the doctor who worked out what was wrong.

We’re here. Everyday and permanently here.

Every day we meet the world more than halfway. We do our best to do things your way. We let ourselves get swept along by your rituals, and then behind closed doors we recover.

There is no one type of autistic. Some of us are caring and lovely and kind, some of us are selfish and mean. In other words, we’re people.

People who happen to have a processor that provides them with questions, while other people’s processors might give them answers. That’s the only difference to me. That is my definition of autism.

On Autism Awareness Day, be aware. When you speak about autism we are listening. We love it when you get it right, and we love it even more when you hand the platform to us and let us speak for ourselves.

Be inclusive. Be actively inclusive. Look at spaces critically, ask yourself how you already meet people’s sensory needs.

We need the world and the world needs us. We are your problem-solvers, your repetitive-routine lovers, your I-would-rather-get-on-with-work-than-chat workers.

If you think you’ve never met an autistic adult, you’re wrong. You just were not aware.

We are here, planning our quiet, unsociable revolutions. Waiting for the world to accept us and to see that “autistic” is not a pejorative term, it’s just factual, it just is. It doesn’t mean “problematic” or “stupid” or “un-empathetic.” It’s just a social-processing issue. No more, no less.

My art teacher once told me I was a cat in a world of dogs — that I didn’t need people the way others do. Did you know that Catsuit is an anagram for autistic? Coincidence? Well… yes, but that doesn’t mean I can’t raise my eyebrows suggestively and make it sound meaningful.

Oh, and autistic has two i’s. If you noticed that small detail, then perhaps you’re closer to autism than you think!

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Thinkstock image by Rawpixel Ltd

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Reflections as My Son on the Autism Spectrum Becomes a Teenager

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My son, Adam, is 13 today. I now have three teenagers. I have to continually repeat this to myself for I often wonder how the heck this happened so quickly. But then again, the time it took to get here feels like an eternity. In some ways, having teenaged children seems like an “old hat.” I’ve enjoyed every minute of preparing for homecoming dances, prom and first dates. I’ve survived driver’s education, passing the driver’s test and taking the car out for the first time. I have even survived a first “accident.”  So far, I feel fairly unscathed. College applications are just around the corner, but I’m feeling confident watching my daughter navigate the process while I stand on the sidelines giving her my full support. So far, so good.

Yesterday, I asked Adam what he wanted to do on his birthday besides going to “The Friday’s Restaurant” for dinner. I like to take my kids to do something special; I believe an experience — rather than something material — will be remembered long after their birthday is over. This past year, we took Lacey to a concert, Alex saw “Hamilton” and Adam chose the car wash. I am not surprised; it’s what he enjoys. He goes to bed by 8:30 p.m. On most days, he wakes up by 6:30 am. He keeps his room in order, although the “order” may only make sense to him. He can always find his things; he puts them in the same spot every time. His LEGO helicopters are placed and labeled in various places in his room. He even has a certain color he wears for each day of the week.

Not too long ago, I was going through a mountain of pictures which at one time were intended for Pinterest-worthy scrapbooks. It was on this day I realized how unorganized my pictures were. I could barely narrow down the exact year most of the photos were taken. However, it occurred to me I could tell the exact day of the week a picture was taken based on the color of shirt Adam was wearing. I was suddenly grateful for his patterns.

While some aspects about Adam can be predictable, there are aspects that have been more complicated. I look back on the years of medical specialists, infections, surgeries, sleepless nights and battles with the education system. I reflect on the amount of experts who gave us their “professional” opinion “preparing” us for things they said he would never do. I look back on the immeasurable amount of time we invested into finding the appropriate resources to prove what Adam was capable of.

But though there were challenges, I would not change my life for anything. I would not change my son for anything. Adam has taught me more about patience, persistence, faith and resilience than anyone else ever could.

But today, my “hat” feels a bit unfamiliar, a bit different. I’m about to prepare for homecoming dances and prom from the vantage point of autism. And will there be a first date? Only time will tell.

Then there’s driver’s education. Adam’s plan of getting his permit at 15 and getting his driver’s license at 16 may follow a slightly different timeline. But I have full confidence he will be behind that wheel some day. The one thing I do know for sure is his grand plan of getting a blue Corolla for his 16th birthday is not going to happen.

And I’m excited to see what college brings. I continue to hear about phenomenal post-secondary programs for individuals with autism.

For now, I will focus on day one of my son’s teen years with autism. I’m fairly certain that I’m in for quite the ride.

Black and white photo of author's son as a child

Editor’s note: This story has been published with permission from the author’s son.

Follow this journey on Kimberly’s blog.

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What I Realized When My Daughter Said, 'I Love Autism!'

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I have always said, there is something about Felicity. Not sure what it is. Perhaps she’s an old soul who when arriving on this planet fussed to no end because she wasn’t content in just being a baby. Perhaps she is pure. Felicity always surprises me…sometimes in ways that try my patience.

Last week Felicity turned 8. I have shared how Felicity started out struggling. I shared how neighbors would check to see if I was OK because her colic had her crying from dawn to dusk and I shared how she’s truly the meaning of her name, happiness.

Today, as I rushed around trying to get dinner cooked, homework complete and make sure we had all we needed for the next day, she appeared. She stood before me and asked to create. You see, Felicity also creates… a lot… and often leaves her creations (and creative methods all over the house for the little ones to get and use in various places such as couches), so we have a rule: you must ask to create. And she did. I agreed and looked up as she ran to grab the markers, paint, pens and pencils and prop herself up at the table. I was chatting with my good friend and glanced over to see, “I love Austin.”

“You love Austin? Who is Austin,” I wondered when she piped up and said, “No! I love autism.”

“You love autism?” I asked, and instantly I smiled. Truth is, this kid pointed out what I already knew. I love autism too. It has its challenges, but I love it for so many reasons.

little girl holding sign that says i love autism

I love that I have become more patient.

I love that I have become more understanding.

I love that autism has made my children more aware of others with disability.

I love that autism is finally showing me what I am supposed to do with my life and why I believe God chose to have me here on earth.

I love that autism teaches me to relish in the moments. I love that because of autism, I live, eat and breathe milestones, and those simple sentences you never thought twice about become gems you share with friends.

I love that autism has made my marriage better.

I love that autism has taught me to allow myself to be snuggled and cuddled the way a mom should be.

I won’t pretend we don’t have our challenges. I won’t pretend I don’t question myself as a wife, mother and friend, but I will celebrate our struggles when I am reminded of all the good autism brings.

As I said today to someone: I never planned this journey, but the girl who is guiding me along the way is my hero because she’s made me the person I was intended to be.

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