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When Someone Says, ‘He Has Autism? But He Seems So Smart.’

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Has anyone ever said this about you or your child? When I work with parents of children on the autism spectrum, they tell me a typical unsolicited comment includes, “Oh, your child is on the spectrum? But he seems so smart!”

When I was growing up on the spectrum, I was seen exactly like this because of my ability to do my homework twice as fast as many peers in my classes. When I was in fourth grade in mathematics, I would get As often on tests and homework assignments and receive average grades in my other classes. When my parents would tell people about my grades, though, they would often get asked how I could be on the spectrum.

Today I get the same thing when I go out to speak. You won’t believe how many times during a Q&A I hear about how I’ve “grown out of having autism” and how I “seem so smart now.”

Whenever I hear a comment like this I cringe, but it’s also an opportunity to educate.

Many people with autism have unique interests and also unique learning styles. We will often pay attention more intently when we are doing something that interests us versus something we don’t like. Because of our key interests, many of us can become experts in our fields if we have a passion behind them. Temple Grandin, one of our leading advocates in the autism community, once said, “Half of Silicon Valley is probably somewhere on the autism spectrum.” Many of those in Silicon Valley, autistic or not, are the smartest people in the world because they’ve been able to turn their interests in technology into a career.

Of course, many individuals with autism (and without autism) may struggle to perform well in certain areas — but that doesn’t make them any less bright than the next person you meet. When we can find a way to teach the way these kids learn, we can find ways to help them show the world how bright they truly are.

This goes for those who are nonverbal as well. I used to be under the misconception that because someone is nonverbal that meant they were on the “low-functioning side” of the spectrum. Today, more than a quarter of individuals who have autism are also nonverbal. It wasn’t until I heard of Carly Fleischmann’s story, a young woman with autism who is nonverbal but communicates via her iPad, that I then learned of the countless stories of bright individuals like her out there in our community. 

Bottom line is, the next time you hear a comment like this, I want you to be reassured that our children are brighter than what the general public’s perception is. We are a close knit community, but we have a loud voice when it comes to having our stories to tell.

Ignorance is truly a lack of awareness, and the more barriers we can break down to avoid these comments the better our community will be.

A version of this blog originally appeared on KerryMagro.com.

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I Hope You Never Have to Remind Me: A Letter to My Son With Autism

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I have to say, we’ve come a long way, you and me, on this wild journey. And I’ve grown as much as you have in these short, full five years since we first laid eyes on each other.

No doubt we have our moments, you and me, when you cry and I want to, and when I cry and then it makes you cry, too. When you get mad and then I get mad, but at least we are mad together. It can be downright frustrating when you can’t understand each other. But we’re finding a way, you and me… our secret way of understanding. And in our understanding, we’re both learning how to live together and love each other. You’re learning to use your words, and I’m learning to watch mine. You’re learning to speak louder, while I’m learning to tone it down.

Yeah, we’ve come a long way, you and me, on this journey.

So when it happens, when I forget, and it feels like we’ve become strangers all over again — and I can’t reach you, because you’ve shut down and in all that shutting and retreating, you’ve shut me out. Please let me into your hiding place, so I can save us both from this place, where walls are tall and wills are strong and understanding has become a deserted friend. Because sometimes in all this growing together, I forget we’re worlds apart. And when our worlds collide, sometimes it’s hard to find a meeting ground.

The truth is, I need you as much as you need me. And I don’t ever want to lose what we have, this strange, silent understanding.

I admit I get caught up in myself sometimes, in my dreams for you and hopes for more. It’s just a straight-up mommy thing that can’t always be helped; that’s just how we get sometimes. But you are you, and I am me, and that’s what makes this such an adventurous journey. And for a moment I may forget just how much you’ve taught me and how much I’ve grown since we first met.

So please forgive me if I ever forget. If I ever take for granted our differences that color our lives and gift us with feelings we thought we could never experience. And if I forget like all mommies do, and you just have to remind me, even though I hope you don’t — I’ll be right here waiting until you let me back in, so we can keep walking this journey together again.

Follow this journey on Branch Life Journey.

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When I Questioned If I Did the Right Thing During My Son's Meltdown

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This was going to be one of those days, I could tell. Any little bump or graze would make him screech. If a toy wouldn’t stand, he’d yell. My son was on pins and needles. I thought an active day would fix things. We’ll go to the playground so he could climb and run it out. Since it was a hot day, he can enjoy the sprinklers too.

Getting him out of the house can be tough sometimes, but he went for it. Everything was going great; we came across a local festival. Lots of bouncy play areas and activities, another chance to expel all that energy. He waited patiently on each line for his turn at each activity. We made it to the playground, where he ran through the sprinklers and climbed and played to his heart’s content. I followed around, helping fill up his water gun, an excuse for me to dodge the heat and enjoy the sprinkler, too.

After that, we even went for frozen yogurt. With pop music pumping through the speakers, he couldn’t contain himself. He got up and began to boogie down, to the delight of the other customers and, I, knowing that I would’ve done the same thing if I wasn’t busy eating my fro yo, just sat and enjoyed seeing him so carefree after this morning’s edginess.

To cap things off, we needed to make a quick run to the drugstore. It would be a quick pass to get three essentials, and then we’d go home. It’s one of his favorite hangouts, so he was game. As promised, we got the items quickly and got in line to pay. Then he spotted a stuffed animal toy, this one larger than the one he already had at home.

After saying no to half a dozen other plush toys at a local toy shop on the way to the playground, he heard no one too many times. He started crying. Just as we were next on the cashier’s line, he stomped away, yelling all along the way to the back of the store. I waited for a minute, but it was clear he wasn’t coming back. I got out of the line to find him. I called him, but no answer. I found him sitting with his arm in the health station cuff, trying to check his blood pressure and giving me the side eye. It was comic genius, but after a long day of running after him in the hot sun, I could feel my own pressure rising.

I told him if he wanted to get home quickly, he needed to calm down. He protested and got loud again. I told him I had to get back on the line, but he said he needed to sit. I asked him to sit on a beach chair nearby until he calmed down. Thankfully the line was short and I was up next. But his shrieks were so shrill, everyone stopped on their tracks. I ran to him. I hadn’t ever seen him have a meltdown like this. My skull was rattling. I told him we needed to leave right then, but he shrieked even louder because he didn’t want to leave.

At that moment my mind raced, trying to find a way through the noise and chaos. The people gawking, my son unable to stop the ear-piercing shrieks, and I couldn’t get him to leave or to calm down. OK, what now?

I wanted so much to calm him down and not cause any more disruption. But all I got out of him was his confusion: He was angry, but he wanted us to pay for the items and get them home. But he was angry and couldn’t stop yelling. But he didn’t want to go home.

Even though it was a neurotypical reaction to not getting a toy that started this, it was that edginess he woke up with that was there now. It wasn’t about the toy anymore. Neither of us knew what it was about anymore. But I had to get us out of there.

I tugged at him to come and he continued melting down. I ran as quickly as I could, parked the basket under the register and apologized. I explained he was having a meltdown and had to get him out.

I ran out with him, still screeching, out to the street. The whole way over, he stomped and yelled, begging me to get the basket and pay for the items. I could feel the huge knot in my chest rising into my throat. I couldn’t. Now we had new gawkers outside and they only had half a story. I held both his wrists and swallowed hard. I looked into his eyes and told him my own fear. “If these people think you’re being hurt, they may call the police.”

His eyes widened. “Am I going to jail?”

“No, Baby,” I said. “But they’re going to ask lots of questions about me hurting you.”

He started yelling. “No! I love you!”

I hugged him hard and this time, spoke even calmer. “I’m not trying to scare you. We’re going to be OK. But not everyone knows what to do when they see someone screaming like you are. Not even me.”

He looked at me, calmer but still frowning. “But I’m so mad!” He started stomping and looking to see how I’d react. My mind fumbled for the proper response.

So I frowned back. “You’re doing it wrong. Stomp again. Harder!”

He looked at me, perplexed. He did a half-stomp.

“No!” I grabbed his hands. “Go ahead. Stomp! Stomp harder!”

I started stomping with him and he followed suit, stomping up and down like we were on a trampoline. His frown began shaking out and a giggle erupted.

“Can we sit on the ledge? I’m tired.”

With that knot in my chest still doing a number on me, it was me who was torn. I wanted to get home already, but I was wiped out, too.

“OK.”

We made our way up the hill to the garden ledge of a senior home and I held him while we rested.

There I tried to get my bearings. I hoped he understood that telling him my fear wasn’t a guilt trip, but my trust that he was old enough to become aware of the way others could interpret things. That I’m as lost and scared as he is, but if we work together, we could work things out. And I wondered if I did the right thing.

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You Are Your Child’s Greatest Advocate: A Poem

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You are your child’s greatest advocate when they need a diagnosis.

You are your child’s greatest advocate the day they are diagnosed with autism.

You are your child’s greatest advocate the day they begin receiving supports.

You are your child’s greatest advocate to be there the days they go through challenges.

You are your child’s greatest advocate when they need understanding.

You are your child’s greatest advocate when they go to school for the first time.

You are your child’s greatest advocate if your child is ever bullied.

You are your child’s greatest advocate when anyone doesn’t understand that you have to educate others about the way your child learns.

You are your child’s greatest advocate if they ever fall on a wait-list for supports.

You are your child’s greatest advocate when people don’t understand that you have to meet your child he or she is.

You are your child’s greatest advocate when you enter IEP meetings.

You are your child’s greatest advocate when they may need accommodations outside of the school.

You are your child’s greatest advocate to help them transition to adulthood.

You are your child’s greatest advocate when the school bus stops coming after the age of 21.

You are your child’s greatest advocate to make sure they have a village that surrounds them for their entire life.

You are your child’s greatest advocate for 500 other some-odd reasons that aren’t listed here. If you’ve met one person with autism you’ve met one person with autism, and each of our stories is different. It is a spectrum.

You are your child’s greatest advocate to make sure they never feel alone

For those reading this, take this poem and share it with your local communities to make sure each parent and guardian who raises a child with autism knows about their impact. I was diagnosed with autism at 4. My parents became my greatest advocates, and through years of occupational, physical, music, speech and theater therapy I’ve been able to live many of my dreams today as an adult on the spectrum who is a national speaker and author. I now have become an advocate in the hopes of helping people on the spectrum and their families.

Never forget the impact you have because even if you don’t realize it at times…

You are your child’s greatest advocate.

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

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A Letter to the Welsh Assembly About the Autism Act That Didn't Pass

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Over here in my corner of the U.K., it’s been a big week for autism rights. The Welsh Assembly, or Senedd, has been voting on whether or not Wales needs a specific “Autism Act” that would protect autistic people’s rights in law.

Sadly the motion didn’t pass, despite every party pledging their support to autism rights. So where does that leave people like me? People living here now, with no support?

I was inspired to write a letter.

Dear Senedd,

I don’t have a loud-hailer or a soapbox. I don’t have the ability to build a public, social platform. I don’t have the structure to make you listen.

But I do have a voice. 

I started off meek and mild and questing, the more I learned the more frustrated I got, but I still wake full of hope. I still believe. I still know things can be better.

This week the Welsh Assembly, a beautiful, swoopy glass building, voted against an Autism Act for Wales — 24 to 27. So close. So few minds to change to change my world, but change they did not.

Why oh why would we need such a thing? An act just for autism? An act of autism? An enactment of autisming?

Because of me.

Because of people like me. Because of my autistic community, my people and their families and carers. Because it matters.

Do you know how much support is available to me in mid-Wales? Right here and now, today, as an adult with autism?

There is nothing. Not one thing. No occupational health services for autistic people (no specialists), no counseling services for autistic people (no training in relevant adjustments), no support groups (“too functional”), no support in work (“not functional enough”).

Why do we need an Autism Act? Why do we need any legislation that offers support and constructive solutions? Because it changes people’s lives for the better. Because it helps. Because suicide rates in “high-functioning” (I hate that term) autistics is nine times that of the general population, but there’s less support available than for neurotypicals.

Whatever we have now has resulted in nothing. No safety net.

I am the eternal optimist. I will keep hoping. I will keep using my muffled voice, because there are those among us who need me to speak.

Wales, I love you. I adore you. Your people, your greenness, your mountains, your valleys. Only you know my hiraeth when I’m not here. Nowhere undulates like you. Nowhere is warmer and kinder. But you’ve let me down. You’re letting me down every day. 

And we need you. 

Cariad

Rhi

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

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What It Means to Be a Ghostbuster When You're Parenting a Child on the Spectrum

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My boys’ obsession with “Ghostbusters” began one afternoon when I was trying to do yoga alone in my bedroom. The movie’s theme song came on, having somehow made its way onto my “Soothing Instrumentals” playlist. The boys stormed in. Soon the three of us were flying around with towels and blankets thrown over our heads, spooking one another and shouting out, “Who ya gonna call?”

Since then we’ve listened to the song countless times, purchased Ghostbuster action figures and even built a model of the Ecto I. Perhaps against my better judgment, I let the boys watch a snippet from the original movie: the scene when Slimer – the putrid green ghost with an obscene pink tongue – first makes its appearance. At the instant Slimer charges Dr. Venkman, ensnaring him in green goo, my older son, who’s on the autism spectrum, ran out of the room.

Although he hasn’t asked to see the movie again, my firstborn’s preoccupation with the paranormal continues. He has endless questions: What are ghosts made of? Where do they live? Are they real? He is both intrigued and unnerved by these invisible beings floating through space, haunting us and wreaking havoc on the material world, somewhat similar to the anxieties he must face every day.  

I didn’t know until recently the extent that autism and anxiety can overlap. Many of behaviors exhibited by kids on the spectrum are actually rooted in anxiety. The list of my son’s anxieties is ever-expanding: the dark, crowds, unexpected noises, changes in routine, odd foods, and now, thanks to his mother, green ghosts that slime people.

Anxiety is also a big part of raising a child with a disability. My own fears often well up at night, like the ginormous Stay Puft marshmallow ghost. I am visited by apparitions from the future: my son, five years from now, trying to correctly identify the letters of the alphabet, in a self-contained classroom or kicked out of school altogether because he’s “too difficult” to manage. My son, age 20, struggling to complete high school or find a job, and unable to live independently. Then I move onto my toddler, who’s showing some signs of autism: meltdowns, food and auditory sensitivities.

I wake up from these restless nights as if I’ve been slimed. I’m liable to transfer this anxiety onto my children. There are times when I push them to perform to alleviate my anxiety, forcing my older son into more handwriting practice or insisting my younger son eat everything on his plate just to prove to me he’s not a “picky eater.” In my desperation to be reassured that they will be OK, I end up communicating to them that they are somehow not OK. 

These moments call for some serious ghostbusting. For me, that means refocusing on what’s real. What’s real is my older son’s smile, his laughter, his sly sense of humor and his wicked morning breath. What’s real is that, yes, he has some significant challenges, but we’re working on them and he’s showing progress. What’s real is my younger son is a stubborn 3-year-old who throws fits and sometimes refuses to eat.  He’s also sociable, confident and positively gleeful. When I get the slime out of my eyes and focus on the real flesh-and-blood children before me I see, in actuality, they’re doing just fine.

Yesterday, the kid’s “Deluxe Ghostbuster Costumes” arrived via Amazon. These full-body jump suits, complete with the Ghostbuster emblem and inflatable proton pack, promise to take their ghostbusting to a whole new level. Now the boys can suit up, turn on the theme song and zap away all those pesky ghosts that keep us up at night – while I try to do yoga.  

Follow this journey on Somewhere Over the Spectrum.

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