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How My Autism Diagnosis Gave Me a Sense of Belonging


Before I was diagnosed with autism spectrum disorder (ASD) a year ago, I didn’t really know who I was. Growing up, I was an awkward kid who never really wanted to do the same things as her peers, and that only grew worse throughout my teenage years. I was really excited about things others around me were not, like 1960s sitcoms, subway systems and repetitively playing tic-tac-toe against myself. Everyone around me seemed to be making these new decisions with their time and money. They wanted to go on dates and shop at the mall for makeup, but I wanted to spend time talking about whatever my brain was stuck on that day or week or month. I just never seemed to fit.

My journey to being diagnosed wasn’t simple. I went to a therapist my freshman year of college for obsessive-compulsive disorder. I did it all privately; I didn’t want to tell even my parents how much I was struggling with anxiety and the transition to college. I sat down for my first appointment. (If you’ve never been to a therapist, it is usually an intake appointment where they gather information about you to try to help figure out a treatment plan.) Within one hour, this therapist told me she suspected I had Asperger’s syndrome. I left thinking she was wrong and never went back. Two years later, I reassessed the situation after struggling with more sensory processing issues. I actually did some research and found out she was right — many of the symptoms fit me. I found another doctor, and after four hours of assessments, he deemed me to fit the criteria. I walked out with paperwork in my hand that said I was, in fact, on the autism spectrum.

 

For the first time in my life, I made sense. Some people might think being diagnosed with ASD would be devastating and take a toll on one’s self-esteem. For me, it was the exact opposite. I found other people like me. I started to realize they were like me. They had obsessions too, and they struggled with socializing like I did. I wasn’t alone anymore. That sense of belonging made me OK with being different. I finally had an explanation of why I was who I was. I found an identity and became OK with myself.

I have found myself. Some people search their whole lives for their true identity. I found mine when I was 20. I am self-confident and have learned how to work around any social limitations I come across. I also have learned it is OK not to fit that mold. All of the unspoken rules I missed, all of the time I spent doing my own thing, all of the obsessions, all of the difference, all of the everything — it’s all OK. I am OK.

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Why I Initiate the Conversation About My Daughter Being on the Autism Spectrum


Moms, dads, grandparents and caregivers everywhere, let this serve as your official warning: If I am out in public with my little girl, and she begins to “act out” in a way that is foreign to you, I will initiate a conversation.

I will talk about something which you might not know how to respond.

I will meet your gaze and tell you my daughter’s name is Piper, and she has autism. I am that mom.

Please don’t mistake my intentions. I will not initiate that conversation to make excuses for my child any more than I will utter those words with the intent of backing you into a corner. My goal is quite the opposite. I’ll tell you she has autism to open the door to reciprocal conversation. I’ll want you to know that as my reality plays out before your eyes, it is OK to ask questions. I will tell you her name to make her “real” to you, and not just some child having a hard time in a parking lot or on a playground.

I will tell you as little or as much as you care to hear. I will tell you autism is different for every child. I will tell you the behaviors Piper is exhibiting may seem odd to you (like continuous spinning or repetitive actions) but they are actually helping ground her in a situation that is beginning to feel overwhelming. I may even get personal, if the conversation leads that way, and tell you how painful it is when people choose to look away, as if she and what she is experiencing don’t exist at all. Because when it comes down to it, regularly averted eyes and silence hit me with a much greater force than any words someone could speak out loud. Because even if words are hurtful, I know Piper is present to the person speaking them.

I am that mom. I will tell you about Piper if you’ll let me. Perhaps we will have a meaningful conversation. That is my ultimate goal. Even if you don’t know how to follow up to what I have told you, and you change the subject or move on, maybe I will have given you something to think about later. Maybe you’ll look up some information about autism in your down-time, and the next time you find yourself in that situation with another mom like me, you’ll feel more comfortable reaching out. Maybe the information you find will enable you to give an informed answer to your own child when they ask you why my daughter was acting a certain way. As long as a door opens somewhere as the result of my words, awareness will have spread a little bit more.

I seek to spread autism awareness because it is key to the future of children like Piper. The little conversations you have with your children about her, and others like her, will shape how she is viewed and treated by her peers. This has a direct impact on self-esteem, especially in social settings, which can be most challenging for anyone on the autism spectrum.

My experience as the mother to a child with autism has taught me that sometimes people don’t know what to say, and other times, they don’t know if it’s OK to ask questions. By initiating a conversation that might feel uncomfortable to you, I am giving you my permission (practically begging you, as a matter of fact) to ask away. I am an open book, and Piper’s story is still being written. If, in response to what I say to you during our brief encounter, you step out of your comfort zone and learn, this gives you the power to help write a positive chapter somewhere in her story. Just by learning, you have the opportunity to positively impact a life. I believe that can be rewarding for both of us.

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Connecting With My Son Over Watermelon Slices


He was about 5 years old at the time and just like most kids, interested in exploring his surroundings. Although, as a child with Fragile X syndrome and autism, he explored his world a bit differently than other children.

That day we were at Wal-Mart.

In the produce section.

Payton was diagnosed as being on the spectrum shortly after turning 2. After visiting with many physicians, psychologists and therapists, it wasn’t until we met a wonderful physician 150 miles from our home who, within five minutes, was able to determine our son was on the spectrum and having Fragile X syndrome. A couple genetics tests and a few weeks later, we knew for sure.

Since that time, his mother and I did everything we could to learn about his world. We researched what therapies to use. Visited potential schools for Payton. We did everything parents do so their children will succeed. But in that time, through all the research, the traveling and the discussions with specialists, nothing prepared me for a seemingly widening gap between Payton and me.

Payton and I weren’t connecting with one another. Sure, he would return a smile or two if prompted, but would quickly return to whatever he was focused on at the moment. I would try and do what he was doing, get to his level, yet he was completely secure in his own world. It was disheartening at times.

Here was a boy with a loving father who so desperately wanted to share experiences with him. A father who wanted to explore the world together and become a super tandem of father and son.

But that didn’t happen until, “Whose kid is this?” A loud, booming voice could be heard over my left shoulder. I held the cooler door open with my right hand as I turned my head in the direction toward the man’s voice.

It was my kid, Payton.

It must have taken him less than a few seconds to wander about 30 feet away from me. He was standing there, startled and looking into a refrigerated, open shelf display unit used for fruit. The man, about five feet away from Payton, was easily four or five inches taller than my six foot frame, and probably twice my weight.

I dropped the shopping basket as the cooler door slammed shut and ran over to my son.

“People want to eat these, he shouldn’t be doing that!” He was just as loud as the first time. Almost as if he wanted to make an example out of my son.

“Sir, I can explain. You see my — “

Before I could finish he continued, “It don’t matter about your son. You need to curb your kid!”

It don’t matter? Of course it does! Doesn’t he understand?

My inner voice was formulating a wonderfully articulate response about the tendencies autistic children have in a new environment. But I knew it was useless. The Wal-Mart produce section isn’t the place to hold an intellectual conversation about the rearing skills necessary to raise a child on the spectrum. And even if it was, this man surely wasn’t going to listen.

“Yes sir. I’m sorry. I will keep a better eye on him next time,” I responded as I stepped between him and Payton.

“Well, you better. We are shopping here and don’t need our fruits all messed up.”

“I understand, thank you.” And with that I turned around, realizing I didn’t even know why the man was upset in the first place.

On the open shelves, and in the cooler below, were dozens of watermelon slices neatly packaged on white styrofoam squares and wrapped with cellophane. They were on sale and seemed to be a popular item on this summer day.

At first, I couldn’t find any reason why the burly man made such a scene. Perhaps Payton was simply in his way. But the display was huge with plenty of room for anyone to easily select a nice piece of watermelon.

And then I saw it. On the lowest shelf just above the cooler, there was a piece of watermelon with what appeared to be holes in it. There were about five or six holes pushed about an inch deep into the flesh of the watermelon, just the size of a 5-year-old’s finger.

I looked at the one next to it which had about four holes pressed into the cellophane and into the fruit. Below, another one with about eight holes. Another with six holes. And another. In total, there were about a whole watermelon’s worth of slices which Payton had effectively dented into cratered pieces of pink melon.

The picture formed in my head. In the few seconds I was determining if I wanted sausage or pepperoni on our frozen pizza, my son was systematically ruining each piece of watermelon with his tiny fingers. Payton was a quick worker and I could see that it may not have taken much longer for the remaining “good” pieces to feel his fingers, and the burly man sought to stop it immediately.

But why holes in watermelon?

I had read early on — and seen firsthand — how Payton will explore his environment through tactile signals. He loved to touch, hold and feel everything. But here he was simply sticking his finger in fruit!

I looked down at him. He briefly looked back, a bit curious but unconcerned, and swiftly proceeded with his mission of sticking each piece of watermelon with his index finger. I didn’t stop him but just watched for a moment. Squish, squish, squish. He kept going one hole at time. After five or six holes, he moved onto the next piece.

I don’t know why I did it, but I stuck my finger into a piece which was on a higher shelf than Payton’s, almost chest high. Squish. I could feel the watermelon easily give way under the pressure of my finger. Even more, I could feel the actual structure of the watermelon break down the further I pushed in. It was a curious sensation, one I did not expect.

Payton stopped.

He was looking up at my piece of watermelon. Then he looked at me, in my eyes, for longest time.

I looked back at my piece of watermelon and gave it another squish from my finger. My head turned back to Payton who was watching intently. Then he turned and stuck his tiny finger into a fresh piece of watermelon. He looked back at me with a smile, it was now my turn.

The back and forth continued. His turn, my turn. A few minutes had passed before a store employee approached.

“I’ll pay for any damaged watermelons,” I said before she could speak.

She smiled, “have fun!”

I can only imagine what other people were thinking, I could feel a few eyes setting on us and nods of disapproval in my peripheral, but I didn’t care. Payton and I had a job to do, or maybe it was a game. Either way, for the first time I felt we were on the same page, completely and uniquely connected through this new, fun activity of ours.

Finally! We were the dynamic father and son duo!

It was a wonderful feeling I’ll never forget. I often look back upon that day at times when Payton and I can’t seem to connect, I remind myself to slow down and enjoy the moment. Inevitably something will appear and become a catalyst for a connection. Just like it did the first time in the Wal-Mart produce section.

Oh, and for dinner that night Payton choose the sausage pizza, while I provided us with 19 slightly dented watermelon slices!

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To the Hairdresser Who Helped My Son on the Autism Spectrum


They say we affect the universe even when we move a finger. Everything we do has an impact. Anything others do to us has an effect. We are all the product of each other’s actions and our lives are intertwined in ways we might not even know. That is the reason why I insist on being kind to everyone we come across because our kindness can turn an ordinary day extraordinary. This time my son and I were at the receiving end of this kindness, and that, too, in the most unexpected situation.

I love long hair on my son, but I love it even more when I get his hair trimmed and suddenly I see his twinkling eyes all round and bright that were peeping from behind his mane a while ago. However, this joy is entirely one-sided, because a trip to the hairdresser is no walk in the park for my son.

The hair dryers, clippers, trimmers, scissors, the apron they put on him, the holding his head down — there are too many things that make him extremely anxious and uncomfortable. Going to the hairdresser is an ordeal and we really plan ahead as a family for this trip. We always ensure both my husband and I are there, we have extra clothes packed in case my son throws up out of nervousness and we carry some distractions like his iPad and some fidget toys to keep him distracted.

This trip was not supposed to be any different. It was one of those “deal days” at the salon and it was rather busy, even at an odd time of the day. The wait in a crowded room and the hum and buzz around him had already pushed our son to the edge. When he was called in he resisted, and it was only after some convincing that he finally sat on the chair. I introduced him, I explained his sensory issues and other challenges — a routine I’ve learned to follow over the years as it makes things less complicated.

The hairdresser seemed nice. Like many people who have not worked with an autistic child but don’t want to do something “wrong,” she was cautious and careful, like she was working with hot glass while standing on egg shells. My son was already nervous and was trying to jump off the chair. In between trying to sit him still, distract him and cut his hair , it was complete chaos — like always.

It was then this lady, Terry,  who had checked us in walked up to us and held my son’s hand. She knelt on the floor and gestured the hairdresser to pause. She talked to my son in very gentle whispers, rubbing his palms, reassuring him and singing rhymes to him. I could see she was rusty with the rhymes, but she tried and laughed softly every time she messed up the lyrics. We could see a smile slowly sweeping across our son’s face. He felt safe with his hands firmly secure in his new friend’s hands. Unlike all our previous visits, we were no longer trying to hold our son’s head in place, or hug him tight to hold him down. He was not stressed anymore.

As the hairdresser quickly and swiftly resumed her job, some of this magic brushed off on her, too, and she felt more at ease. She was now also singing to my son while Terry sat there talking to him, keeping him not just distracted but also engaged. The iPad seemed useless against the magic she was weaving with her words and actions. I could see Terry covered from head to toe in my son’s hair, still smiling that charming smile, still greeting her customers, still comforting my son. Not a frown on her face.

Before we knew, we were done. This time it did not seem like an ordeal and these 10 minutes did not feel like an hour. It all felt like a gentle breeze that brushed past us and left us refreshed. Those 10 minutes taught us the beauty of kindness.

Sometimes all it takes is a warm hug, a reaching hand, a genuine smile and a wonderful heart to make a day extraordinary. Life is made up of these beautiful, grateful moments. The rest is just frills, like a glass of martini with a fancy stirrer, good to look at but it’s the martini that keeps you going, not the stirrer. Thanks Terry for adding another glass of martini to my life!

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Thinkstock image by Oleksandr Hrytsiv

Disneyland castle with blue sky in background

A Letter to Disney About Promoting Autism Awareness and Acceptance


Dear Disney,

Growing up on the autism spectrum, one of the most magical places in the world for me to visit was Disney. It didn’t matter if it was Disney World, Disneyland or simply popping in a VHS tape to watch one of the many Disney movies you had made available. Now as an adult who has become an international motivational speaker, I’ve traveled to your parks with younger children with disabilities, and I have to say I’m impressed with the magic
that still remains to this day.

When I was nonverbal and had limited pretend play due to my autism diagnosis, my parents always encouraged me with Disney. That’s when my fascination with all things Disney began. After beginning to talk for the first time, one of the first songs I ever sang in front of an audience was the song  ‘The Circle of Life,” from ‘The Lion King.’ After finding a passion for music from moments like this, I would pursue theatre therapy to help me progress with my communication.

As much as our autism community has moved forward to help provide supports to help our loved ones progress such as myself, I would love to help the future generations of kids with disabilities do the same. That’s why I would like your help. I know countless stories just like mine of those who have been positively impacted by Disney. For example, several of my mentees who have disabilities want to work at Disney one day. Today, I give talks to groups such as yours, PSEG, Wyndham Destination Network, American Express and others in the hopes of them learning about the benefits of hiring people on the spectrum. Then, we also give talks to provide a better understanding to organizations of some of the signs of autism and other disabilities so they can be more aware and accepting.

 

If you ever read this letter, I hope you may reach out to me one day in the hopes we can collaborate to host an event, whether it be a Lunch & Learn or any other type of special event to bring disabilities to the discussion from the perspective of someone who grew up with a disability.

You would be making a lifetime of difference by using your platform for this amazing community.

A version of this post originally appeared on Kerrymagro.com.

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Photo source: Disneyland Facebook page

Nathan McConnell Creates 'Growing Up Aspie,' a Comic About Life on the Autism Spectrum


Nathan McConnell creates comics for people like him, and if you grew up on the autism spectrum, you might find his “Growing Up Aspie” illustrations relatable.

“I was diagnosed as a child with Asperger’s syndrome but due to lack of understanding, it was quickly forgotten,” McConnell told The Mighty. “So growing up, I went through years of extreme bullying, relationship issues with friends and others that often ended in catastrophic falling outs… This continued into adulthood and it wasn’t until my mother reminded me of my childhood diagnosis that I was finally able to look back on my experiences with that added filter and the years of frustration all just made sense.”

After getting a job as a Samsung representative, McConnell bought himself a Note 3 phone and began sketching. Through his sketches, McConnell got the idea for “Growing Up Aspie” and decided to tell his story in comic form.

While many illustrations in this series focus on McConnell’s experience, he also uses feedback from other people on the spectrum to inform his work. “Often times, I will read the autism message boards on Facebook for something that is a mutual experience to a lot of us or that desperately needs to be addressed for autistics who haven’t been through it yet,” he said of his work.

In the three years, he has created hundreds of drawings, which he recently compiled for his debut book “Growing Up Aspie: Year One.” “This book is a collection of my first year of comics and the deeper meanings originally posted with them,” McConnell said. “In this first year of comics, you follow me losing my last job, struggling to find a new one and finally fighting my way into a full-time position in my field after almost 10 years of trying and failing.”

Of his illustrations, McConnell has a few favorites, including “360 No Scope,” about how autistic people often see everything at once — something McConnell describes as “a blessing and a curse.” He is also fond of the very first comic he made, “Making Friends in Middle School,” which he wrote based on a memory from his teenage years when he says he realized he wasn’t quite like other kids.

The response to his work, McConnell said, has been amazing. “I’ve had girlfriends, boyfriends, husbands, wives, moms and dads all write me thanking me for helping them understand the autistic person in their life,” he said. “I’ve also had autistic men, women, and children write me crying and thanking me for letting them know that they are not the only ones who have experienced what they have.”

While McConnell hopes his illustrations will help bridge the gap between neurotypical people and autistic people, one thing he wants the former to do is listen. “Listen to what we are trying to say and not what you think we are saying,” he said. “Many of us have had so many people listen to half a sentence and feel like they had our full meaning figured out. It’s a recipe for invalidation and misunderstandings.”

For more of McConnell’s work, visit the “Growing Up Aspie” Facebook page.

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