What It’s Like to Grow Up With Autism

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What is autism to me?

I was diagnosed with autism at the age of 2. Though some people consider that to be far too young for a diagnosis, I think I’m one of the lucky ones. Some people, especially girls, don’t get a diagnosis until much later in life (and may still not have one) and spend their whole lives wondering why they’re so different from everybody else. I got to know right away, and I’m glad.

All my life, I’ve had very strong interests in particular subjects. At the age of 6, I had such a strong interest in the video game character Yoshi, I actually used the name Yoshi when inventing a new word: “yoshiablic.” This word was meant to describe pleasant feelings I get when engaging in my interests. Throughout the years, doing so involved doing a lot of research on my topic of choice.

At age 11, I would remember the grand opening date, the location, the number of stores, and the square footage of many malls, such as Lloyd Center in Portland, Oregon. I have had a variety of interests, including towers, bridges, roller coasters, cars, cities, malls, space shuttles, flowers, video games, the Titanic, volcanoes, astronomy, origami, cats, and bows. My latest interest is in particle accelerators used for scientific research (such as the Large Hadron Collider).

I have many talents as well. I graduated high school on time with a 3.81 GPA. I have extensive artistic capabilities, and an enhanced ability to understand myself. When it comes to social interaction, however, I tend to feel awkward and unwanted. I certainly do have a lot of friends, but I’m highly critical of myself and how I interact with people. Also, I tend to have more emotions than I know what to do with.

This was my downfall in school, as I had meltdowns on a fairly regular basis. My social and emotional issues have led to low self-esteem in this area. I cannot count how many times I’ve had significant issues at school that warranted a call to my mom. Schools throughout the years have handled me differently. In my opinion, middle school was the one that handled me the best.

The teachers there allowed me to be independent, encouraged me to engage in my interests, and had a safe place and safe people for me to turn to in times of stress.

As for the mistakes schools made with me, in high school, my independence was taken away when they required me to have a one-on-one aide when I went to class. This occurred following a severe meltdown in which I had cut myself out of anger. I felt embarrassed and that the teachers who forced the aides on me were very condescending. All they ever did was focus on the negative. Every time I tried to mention a way I had improved, they would either object to what I had to say or redirect the conversation to my weaknesses.

At the ages of 10 and 11, I was subject to what I feel was the worst mistake teachers have ever made with me. I had my interest in malls at this time. The teachers felt that my interests were a distraction in the classroom, so I was therefore not allowed to even mention them while in the school building. Until teachers made this rule, which occurred twice and lasted around a month each time, I actually enjoyed going to school. I felt violated as a result of this rule, and spent the next 11 years dwelling on it and trying to forgive the teachers that made the rule.

stephanie keyes the mighty Today, I use my experience with this wrongful rule to advocate for other autistic people. As unacceptable as this rule was, it taught me that autistic people are inseparable from their interests. Trying to take away or suppress our interests violates who we are and is almost criminal. I emphasize the importance of interests when I am asked how to best deal with autistic people. I believe interests are a natural, built-in coping mechanism that can enhance the lives of autistics.

So what is autism to me?

It’s a human brain programmed in a way that is far different from the average person. These differences often put the individual at a disadvantage, much like if an Android phone was in a world run by Apple phones.

Autism may have common aspects among people diagnosed with it, but no two autistic people are exactly alike. It is a mistake to assume every autistic individual is the same.

Some people (like me) struggle with extreme emotions and social awkwardness, while others can’t even speak or care for themselves. No matter the differences, no matter the struggles, we are all human and deserve to be treated accordingly.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why I've Decided Not to Attend My Son's High School Graduation

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It’s that time of year again — prom season. It’s the time of year when I avoid my Facebook newsfeed like the plague. The pictures of my friends’ teenagers eat away at me. I look at my friend’s son who was born around the same time as my son, Mike, and feel the giant gap between our boys. This year, the pain is compounded by the reality that Mike is a senior. He should be preparing for graduation, packing for college and attending the prom like the rest of his classmates. He is not.

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Mike on his first day of school.

If you follow my blog, you know how deeply I love, accept and celebrate Mike. I’ve rejoiced with every milestone, knowing how much effort it takes for him to master basic tasks. I do my best to approach each day with acceptance. I have mastered the art of burying my pain and remembering each day is a gift. This year, I’ve been having a difficult time pushing away the painful realities. I’ve received college brochures, been solicited for graduation announcements and even received a call from a military recruiter. There have been countless little “hits” I’ve had to push out of my mind and heart. At the beginning of the year, I was given a graduation packet which included a form to order Mike’s cap and gown. I glanced at it and stuck it in a pile of papers on my desk. I haven’t been able to open the packet since, and the deadlines have past.

While I’m proud of Mike’s accomplishments, I’m also feeling melancholy. He is graduating but returning to the same school for four more years. He will be there after his younger sister matriculates to college. He will be there until he is 22 years old.

After painful consideration, I’ve decided to skip Mike’s high school graduation ceremony. While I have no doubt that his school and teachers would provide whatever accommodations necessary to ensure his participation would be without incident, I’m just not sure there is anything that could accommodate me.

I know I won’t be able to sit in an audience and watch his typical peers transition to life without feeling immense sadness. I don’t want to listen to speeches about opportunities and the future. I don’t want to see Mike sitting in the crowd of students with headphones on and playing on his iPad. I don’t want to spend his graduation day mourning his reality.

I’ve decided to celebrate Mike’s accomplishments in a manner he will enjoy. I’ve decided to have a private party with his friends and family. I’ve decided to avoid the traditional and opt for the personal. In all honesty, a private party is probably the greatest graduation present I could give him. It’s an accommodation that will let him be ‘Mike.’

mikegrad

This post originally appeared on Autism Hippie.

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19 Things Only Special Moms Understand

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A group of strong, intelligent, courageous, loving, special needs mamas wrote these 19 things that only a special mom would understand. One of their most important qualities is that they have a sense of humor… something that is a requirement for sanity for the special needs parent.

1. If you’re standing in line at Target and your kid hugs the shopper in line in front of you because her coat is soft… you might be a special mom.

2. If you keep a trunk full of bubble wrap in your car for self-soothing… you might be a special mom.

3. If you keep a stress ball in every purse and backpack your family owns… you might be a special mom.

4. If you plan your outfit around whether or not you will able to carry a mid-meltdown kid out of a room, and have zero wardrobe malfunctions…you might be a special mom.

5. If you get lazy and don’t put the vacuum away for a couple days, and when you finally do, your kid keeps getting it out and putting it back in “its spot” in the middle of the living room because he now believes that’s where it “goes” and that’s where it NEEDS to be… you might be a special mom.

6. If you stop traffic to retrieve a hub cap that just fell off a semi, because this is your kid’s latest obsession and you know he’ll be thrilled… you might be a special mom.

7. If you go to a birthday party location three days before the actual party to practice what to do… you might be a special mom.

8. If your kid tells her sibling to stop breathing because it’s annoying… you might be a special mom.

9. If your kid “tells” you that your singing voice is ugly by putting his hands over his ears… you might be a special mom.

10. If you’re constantly tripping over objects grouped in three all around your house… you might be a special mom.

11. If your child gets punished at school for participating in an age-appropriate prank, but inside you’re cheering… you might be a special mom.

12. If you run to the grocery store late at night because you’ve just realized you’re out of grapes and if there are not grapes in your kid’s lunch, there WILL be a meltdown… you might be a special mom.

13. If you are excited instead of upset when your child continues to try to sit on the kitchen table because he is trying to imitate what his sister is doing… you might be a special mom.

14. If people don’t understand you because you say things like, IEP, TEIS, IDEA, OT, PT, ST, LRE, presumptive placement, supplemental aids and services, or ABA… you might be a special mom.

Mother and daughter on a beach

15. If you listen to Christmas songs 365 days a year… you might be a special mom.

16. If your friends say, “Let’s take the kids to {insert anything that requires waiting in line}” and you just laugh… you might be a special mom.

17. If you have carpal tunnel from continuously spinning the office chair around and around… and around and around in circles… you might be a special mom.

18. If you’re invited to a park or barbeque and your first question is not, “What can I bring?” “What time?” or “Where?” but, “Is it fenced in?”… you might be a special mom.

19. If a simple kiss means the world because that is how your child says, “I love you, Mom”… you might be a special mom.

This post originally appeared on Ramblings of a Special Mom

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Dear Autism, Thanks for Making Me Beautiful

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Autism, I’m not gonna sugarcoat it. You’re an ugly beast. You possessed my son at a young age and immediately went to work, trying to wear me down with his crippling anxiety, volcanic tantrums, physical aggression and foul language.

But I weathered the storm.

You thought you could break me with an adversarial school district that didn’t understand my son’s challenges or strengths. But I armed myself with the knowledge of special education law and at every IEP meeting battled for my son’s Free Appropriate Public Education (FAPE).

I was a warrior.

But instead of retreating, you turned to guerrilla warfare. You surprised me by ambushing my marriage, my health, my sanity. While I was down for the count, you went in for the kill. Your final attempt to ruin me was with the phone call from the police, informing me of months of alleged physical and verbal abuse to my son by his special ed teacher.

Guess what? You finally won.

They say what doesn’t kill you only makes you stronger. I’m a fighter, but I didn’t feel any stronger. After much reflection I realized that in my case, what hadn’t killed me was making me beautiful. Yes, beautiful.

jenn hugunin son the mighty
Photo credit: Christopher Cooke Photography

True, you succeeded in wearing me down, autism, but as you were chipping away at me each day, something amazing was happening. You revealed an inner beauty I didn’t know existed. As you took, you also gave. You were the Colorado River to my Grand Canyon.

After having been in the trenches for years while we waged our war, I gained perspective on what really mattered in life and less tolerance for what didn’t. My compassion grew toward others as I witnessed the struggle of so many. I became more humble as I met other warrior parents, some who were fighting bigger battles than me. I recognized that all brains were not wired the same way – autism had its own unique wiring – and that, in itself, was a beautiful thing.

You, autism, taught me that immense beauty exists inside each of us, but sometimes it’s necessary to go through the process of erosion to reveal it. Some call it the beauty of decay. It’s seen in a graceful Michelangelo sculpture chiseled from a block of marble, a caterpillar morphing into butterfly or a tiny but powerful river carving out an awe-inspiring natural wonder of the world.

But most important, your beauty is seen in my son. He’s a bright, creative, silly, energetic 9-year-old who loves skateboarding, video games and hanging out with his friends.

So, thanks for the metamorphosis, autism. But let’s sign a truce now, OK?

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Little Girl at the Pool Realized My Son Has Autism

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EMTs, firefighters and police officers all have something in common. When crisis arrives and everyone’s running away from it, they’re the ones running towards it. They’re the first on the scene to help, to rescue and to serve. In my world, the term “first responders” means something a little different.

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The first year after my son’s autism diagnosis — now five years ago — was by far the hardest. The news hit us like a mack truck. We were lost, confused and in many ways, in a state of grieving the “what could’ve been.” But probably more than anything, I felt alone. I’ll never forget our first responder, “Dana.” She was the first one to reach out. She has a son with autism, and she told us the first year would be the roughest… but she also told us things would get better. She said we’d find our therapists (we did). She said we’d find a school (we did). She said we’d find our “village”(we did). She said we’d find our way (we did). She was the first of our “first responders.” I’d later meet all the aforementioned amazing people who would also become first responders. The ones who reached out. The ones who came to help. The ones who came to “rescue.” The ones who’d devoted their lives to serve kiddos and families like ours. “Dana.” She was the first of my first responders. That’s something you never forget. That’s something I hope one day to pay forward to someone else in need. I hope one day I can be someone’s first responder.

Spring has sprung, and the weather is getting warm again. I can’t help but think about summer. I can’t help but think about the little girl named “Jade.” Last summer we were living in an apartment with a community pool. We would venture out early to avoid the extreme heat, the crowds and to be honest, yes, to avoid the stares. One time a gentleman (term used loosely here), after looking at my son, motioned to his wife that circular motion between his ear and head. You know, the one people use to indicate someone’s “crazy.” Yeah, that happened. People aren’t always kind. That day, as we walked back towards the apartment, I contemplated all the things I could’ve and should’ve said. And I may have possibly considered running him over with my Prius. OK, maybe not run over but at least tap him with my front bumper (That’ll teach him!) But instead of doing any of that, I went home and I cried, and then I cried some more. I avoided the pool after that as much as I could. My son stims… and he stims a lot. Finger-flicking, hand-flapping and squealing. Behavior that makes him appear “weird” to some people. Kids never initiate play with him, and typically when one has, as soon as they realize he’s different, they walk away. They always walk away.

Except this one time…

son happily playing in the pool I was sitting by the pool watching my son splashing and squealing, doing his stimmy thing, happy as a clam.  In walks “Jade,” somewhere between 7-8 years old, blond hair, freckles across her nose, all 50 pounds of her, if that. She spots him by himself and proceeds to initiate play. She talks, asks him questions and as usual, he doesn’t respond. About this time, I fully expect her to walk away, just like all the others had before her, but she doesn’t. She doesn’t walk away. Instead, she looks at me and asks, “Does he talk?” I respond, “No, he does not.” She asks, “Does he have autism?” I’m not going to lie here, the question stunned me a little. I wasn’t entirely sure how to explain autism to a girl so young. Either way, my response was short and simple, “Yes, he does.”  She turns around and changes her approach with him. Instead of asking him questions, she starts telling him what to do. “Here, get on the float, I’ll pull you,” “I’ll throw the ball, and you catch, OK?” Whoa! Was I really seeing what I was seeing? Was my son playing? Did my son finally have a friend? For about 20 minutes, until the little girl had to go, I got to watch two kids laughing and playing together, and for the first time ever, one of them was mine. Thank God I had sunglasses on because I was a mess. A blubbery, emotional mess at what I’d just witnessed.  

Had I not ventured back to the pool because I was too scared to have another encounter like the one with the “gentleman,” I would’ve missed out on two of the remarkable things. The first one was this: in about 20 minutes, the little girl named Jade gave me something I’d waited six years to see. My son, mine, play with a friend! And the second thing I witnessed, well that was as equally remarkable: That warm summer day, I got to see a first responder being born. And that, my friends, is something you never forget. 

son wearing sunglasses

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An Apology to the Therapist Who Urged Me to Get a Diagnosis

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1517455_476906429114023_765835911775529869_n How do I sum up and explain what it’s been like in our house the past few months? Some people have asked questions, some don’t know what to say and some are still in denial. It all started when Zoey was around 14 months old. She stopped answering to her name, even when we yelled it as loud as possible.

She also stopped making eye contact. I used to light up when I’d call her name and she’d turn to look at me with her big beautiful smile. She started pulling away from us, not wanting to be picked up or held. I couldn’t just walk over to my baby and hug and kiss her like I’d done many times in the past.

Zoey isn’t my first child. She has a sister 16 months older than her. Yes, I have a 3-year-old and a 2-year-old… toddlers, gotta love em! I also went to school for Early Childhood Education. I’ve been around children my whole life. I knew Zoey was not hitting milestones, and her speech was delayed. My brain knew what my heart didn’t want to know. At her 18-month checkup, I mentioned it to her pediatrician. I watched Zoey’s doctor call out her name multiple times in different tones, and my child didn’t flinch.

What followed next were two hearing tests — hearing was fine both times. It was at that point I heard, “You should have a speech evaluation done.” OK.

The Early Intervention team came to our house — a physical therapist and an early education specialist. I sat down on the floor with these two women and Zoey while my husband occupied our 3-year-old. I was asked many questions, and I sat there as they tried to involve Zoey in play and imitation. I watched as they tried to get her to make eye contact and engage with them. After the three-hour eval was done, I sat impatiently waiting for what they had to say to me about my baby. They talked about fine and gross motor skills, but that’s not what I was on the edge of my seat about. Yes, she was delayed a bit in both.

I waited and watched as this professional sat on my floor and looked at her paper, reading what she’d evaluated from being with my child. “She is a beautiful happy girl,” and then I heard a lot of things I tuned out because I could feel it in my gut, my heart and I could see it written on this woman’s face. Then the words came out. “She has the communication skills of a 6 to 8-month-old.” Zoey was 19 months old at that time.

I could feel my heart drop from my chest as I cried. Not just the teary-eyed cries you get when you watch a sad movie — really big tears dropping from my eyes like rain, making my face and shirt wet. I looked at the woman and said, “I’m so sorry… I know that must have been really hard to tell me, I’m sorry, so sorry.” I got up and walked to get a tissue for my face, and I heard her whisper to the other therapist, “That was really hard.” “Yes,” the other woman said, “but you did great.”

You see, no one wants to give or get news like that.

When we finally did see the pediatric neurologist, we had the diagnosis that day.

Follow this journey on the Facebook page Life With Zoey.

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