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One Message I Want Every Family in Our Autism Community to Remember

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When I was doing one of my first internships at Autism Speaks in 2010, I answered over 1,000 emails from parents/caregivers on how to help one of their loved ones on the autism spectrum. During that time, I gave advice on early intervention, therapies, schools, transitional programs, IEP meetings, social skills, visual schedules and much more.

Each time one of those questions came up, though, one of the constants I always reminded them about was this:

You are your child’s greatest advocate. When the time comes, be educated, research, and trust your gut because you know your child best.”

As time has gone along and I’ve traveled the country speaking about my journey on the autism spectrum, I adopted a new saying I share with those who reach out to me on Facebook looking for advice. In addition to the above, now I also say…

“Autism doesn’t come with an instruction guide. It comes with a family who will never give up.”

Autism is not one-size-fits-all, so for everyone out there reading this, just remember to never give up. We learn more and more about autism every single day. I’ve overcome many of my challenges from when I was younger, and one of the reasons I advocate today is to help others do the same.

#NeverGiveUp

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

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My Promise to Fellow Parents of Children on the Autism Spectrum

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I gave birth to my son just before I turned 25 years old. By that time, nearly every person in my small circle of friends and larger circle of co-workers/Facebook friends I haven’t spoken to face-to-face since high school had already started families of their own. So when my son was diagnosed with autism at 3 years old and I began delving into research about neurological developmental disorders, I made a connection with the staggering statistics. The Centers for Disease Control and Prevention released data identifying one in 42 boys on the autism spectrum. One in 42.

I didn’t personally know any other children on the spectrum at that time. I didn’t know any parents facing the questions and concerns my husband and I faced. We walked a very lonely road for some time. But I did the math. I thought of all the young mothers and fathers I knew, and I came to a realization: As they continued to add to their families, another set of parents would find themselves in our position, navigating life with a child on the autism spectrum. As more of my friends announced pregnancies, I secretly wondered who it would be.

In the last two years, two of my friends’ young sons have been diagnosed with autism spectrum disorder. During those same two years, the world of social media and blogging introduced me to even more beautiful families of children with autism — shout out to my girl Shannon and my favorite Instagram follower, Little Aidan. I am so thankful I’ve had the opportunity to bond with these parents.

Recently, one mother text-messaged me to discuss some frustrations she’s been facing. I listened and I promised her I always would. Because we need each other. So this is my public promise to any mother or father of a son or daughter with autism spectrum disorder:

I promise to let you vent if you ever need to. I promise to always remind you of how far you’ve come. I promise to ask about your child. I promise to ask about you. I promise to laugh with you and your child, and I promise to love his/her quirks. I promise to support your relationships and be there if you need to walk away from unsupportive people. I promise to share resources. And I promise I will celebrate every milestone and every bit of progress you and your child make.

We’re in this together. I promise.

Image via Thinkstock.

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How to Explain an Autism Spectrum Diagnosis to a Child

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When I was diagnosed as being on the autism spectrum at 15 years old, I initially shrugged it off. It didn’t really mean anything because I hadn’t changed at all. I didn’t even really know what autism was.

But then, people around me began to change. They changed the way they treated me. Instead of getting upset over things I didn’t understand, they started to calmly explain stuff to me. So I started to look into what the diagnosis was about. I read a chapter of characteristics in a book, and things began to make sense. No wonder I struggled so much with reading comprehension and social situations! So that’s why I’ve always been so “obsessed” with “The Lion King”!

Once I learned more and could see the people around me were listening to my issues, I started to become an advocate. I found that just by sharing my own life experiences, I could help others. I loved answering questions about myself, knowing I might make a difference for someone else.

But one question was always difficult for me to answer.

How do I explain the diagnosis to my child?

I never really knew what to say because I received my diagnosis a bit later. I was more capable of understanding it on my own or at least finding the answers myself. How could a parent or caregiver share this complicated information with a child so they would understand it but still feel OK?

The answer came to me one day when I was volunteering at my local museum for their Sensory-Friendly Day. And it didn’t come to me from talking with an adult. It came from a young boy on the spectrum himself. He said it perfectly.

“I have autism. Sometimes, I struggle with things like looking people in the eyes. But it also means that I have a great imagination.”

So to those of you out there who are wondering how to tell your child they are on the autism spectrum, look no further. Tell them they are on the autism spectrum. Then explain that sometimes, it means they have a hard time with things. List a few small struggles they have. After that, make sure to mention how it contributes to their many, many strengths. Be honest, and remember to keep it positive.

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Stock photo by Alena Ozerova

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What My Emotions Look Like as Someone on the Autism Spectrum

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drawing of a crying girl
“Maror,” drawn by Hilary’s daughter, Aitza.

People with autism are said to have difficultly recognizing and interpreting emotions in themselves and others. I say, likewise people without autism may have difficulty recognizing and interpreting the emotions of autistic people.

I feel all sorts of emotions, though I may not display them or process them in the manner most might expect. For example, a smile often means someone is feeling happy. Well, when I’m feeling happy (and I do experience many varieties of happiness), I tend to make what many people would consider a brooding or serious face. Most times when I’m happy, I’m in deep concentration or meditation on what is making me feel happy, so a smile wouldn’t necessarily manifest. Think of someone who’s performing a high-skill task that requires concentration, like welding. Do you usually expect to see welders smiling gaily while blow-torching steel? (Maybe there’s a few who do, I don’t know.) For me, a certain type of happiness, especially if it’s focused on an external source, will consume a large amount of mental energy, and I’m like the welder who’s focused on the immediate. I’m consumed by the here and now when I’m in the midst of my feelings.

You can then probably imagine how grief might manifest itself. And it has for me in very awkward and uncomfortable ways. It tears me to pieces, sometimes to the point where I crack and begin to laugh uncontrollably. I’ve fallen into bad graces with others over my laughing during funerals and during moments where others would be crying or showing some other physical sign that denotes unhappiness. Here’s a personal example — there was this time, after my mother died back in 2010, when I was in the last two months of pregnancy with my daughter Aitza, that the reality of a maternal absence took me by surprise. I was washing my hands at the bathroom sink and looked into the mirror, and I saw my mother in my own face. I was reminded I was without her; it was the first time that her death registered. Instead of sobs, I began to cackle while tears burned my eyes. Someone looking at me may have thought I was watching an unbelievably hilarious stand-up act. People in the audience at a Lewis Black show often look like I did that afternoon. Inside me, the grief was pulsing like gushing water, and it quickly escalated, roiling into panic. This was an overwhelming, contradicting combination of emotions. I don’t know how many others feel grief this way.

From what I could gather upon questioning acquaintances on the personal experience of their emotions, I sensed my own are unique. You could say I get quite drawn in by my emotions — I inhabit them and interact with them; they comprise worlds. There are unpredictable stretches of time when I get “lost” in those worlds, and it’s difficult to emerge disengaged. Maybe this is what major depressive disorder was like for me before I went into remission, and because my face seldom fluctuates in its expression, my debilitating experience of agony was likely not registering to others. I wonder if this may have been what made me seem unreachable to the people of my past — why now estranged relatives and friends may have been unable to empathize with me. Just because I may smile or seem to have no expression at all, doesn’t mean I’m not feeling pain; it doesn’t mean I am beyond struggling and am robotic.

There are times when I feel very deeply, just by the sights, smells and sounds of my surroundings. It’s not all frightening, though it has the potential to be so, especially if I’m in a place chock-full of the sort of stimulus that is painful to me, such as a grocery store with all of its clanging and clashing shopping carts, loud music on the speakers, cold freezer isles, flickering fluorescent lighting, oscillating multicolored and checkered floor tiles, and shoppers bumping into me as they pass briskly.

And then there are the rare occasions I come into contact with live chamber music in a local library, and I instantaneously transform into a weeping, blubbering mass of humanity whose loud sobbing disrupts the quiet and pensive audience I didn’t notice on my way through the doors. Live violin and cello music is a big weakness of mine. Through the vibrations, which I can feel deep inside my ears and in the hairs on my head, I feel something else beyond the music being heard. I have felt this way with Celtic drums and Inuit throat songs. Humans making music is magic, and I can’t help but notice that.

There are those more frequent times when I am not even experiencing my own emotions, but rather I feel as though I am absorbing in a deep physical and psychic way the emotions and physical sensations of the people surrounding me. It is hard, outright impossible, for me to sort all of it out, and I end up being tricked into thinking I am the angry one, when the man next to me is the one mentally cussing out the driver who rear-ended him during rush hour. This may be why visits to the ER are especially agonizing for me; I find the sensory-grating hospital environment in combination with the palpable pain of other patients often ramps up my own pain. And the eyes. Oh, the eyes transmit so much information, even though I am not capable of sorting through all that information and classifying it. I just don’t seem to have the wiring. And I think this is why I can have difficulty looking into others’ eyes, touching people, or even sitting in the same room with them a lot of the time. This could be one of several reasons I need to seek out a small corner of space that isn’t occupied by anyone other than animals when I’ve had enough of feeling.

I’m beginning to gather — from observations throughout my life, from what I’ve personally experienced and the anecdotes I’ve read — the dissonance I experience may be the pain of “otherness.” The extent to which people seem to engage with emotion, whether in themselves or others, seems to factor heavily into my experience of otherness. Up until very recently, my otherness caused me to experience great emotional and physical struggle. Now, that is beginning to change. When I utilize the power of my emotions and accept that they will never cease to be my world, that they will always be both my biology and psychology inextricably entwined, that I cannot be cut away from them and that is OK — the social stigma I’ve internalized begins to fade, and I’m more apt to live in a society that is still catching up with its emotions. I believe my emotions have the power to teach and to reach. They enrich, they give, and even the negative ones are invaluable, irreplaceable components of this human existence. I think with the more we discuss the myriad ways we are able to feel, we can finally get past awareness and acceptance and be at the point of valuing every individual’s heart and mind.

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A version of this post originally appeared on Healing Hilary’s Heart.

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Chuck E. Cheese's Hosts Sensory Sensitive Sundays for Those on the Autism Spectrum

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Children on the autism spectrum now have more places to play thanks to a new initiative hosted by Chuck E. Cheese’s and the Center for Autism and Related Disorders (CARD). As part of their partnership, Chuck E. Cheese’s will host “Sensory Sensitive Sundays” at its Attleboro, Massachusetts, location, with events scheduled for the first Sunday of each month.

“We are excited to provide a special opportunity every month for sensory sensitive families to enjoy their favorite pizza and games in a safe and friendly environment of tolerance and understanding,” Breanna Tanksley, manager of Chuck E. Cheese’s Attleboro, said in a press release.

The first sensory-friendly event was held on November 6, from 9 a.m. to 11 a.m. Following the first Sunday format, the next event will be held on December 4.

Update: Chuck E. Cheese’s also hosts a sensory-friendly event in Glen Burnie, Maryland. The event features reduced noise and dimmed lighting from 9 a.m. to 11 a.m. on the second Sunday of each month, Stephanie Debarber, assistant manager of the Glen Burnie Chuck E. Cheese’s, told The Mighty. 

“I bring my own kids to our sensory days, and it gives not only our kids a chance to play in a calm, sensory-friendly and understanding environment, but also us parents time with our kids and like-minded, understanding folks,” Debarber said. “All of the cast members we schedule for our events are understanding and want to be there. There is no better feeling as a manager than being there with parents and kids who are happy and genuinely want to be there with each other.”

Chuck E. Cheese is the latest company to organize sensory-sensitive events geared towards children on the autism spectrum. Last month, Toys “R” Us stores in the U.S. and U.K. announced they would hold quiet holiday shopping hours for families on the autism spectrum.

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My Son’s Autism Diagnosis Has Helped Me Better Understand Him

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The wind is brisk, the animals have fled, the leaves have blown into the neighbor’s yard and there is one sad geranium plant making its last stand on the porch. I live in a place where I will have to wear socks, maybe a few layers of them, for the next five months. As cozy as a warm fire can be, it’s that time of year when I need to consciously remind myself of all of the things I am thankful for: the right to vote, my wonderful and loving family, our snug home, this supportive online community, and my son’s autism diagnosis.

Early on in the journey of referrals, diagnosis and therapy plans for our young son, more than once I lamented, “Why him?” The day that a team of stone-faced adults sat me down at a table and used the label autism spectrum disorder in reference to my child, I was frightened. I struggled to imagine what this meant for his future opportunities and how he would find his place in the world. I left in a stupor and cried onto the steering wheel because, somehow, it changed things.

Two years later, I have come ‘round to a new understanding. I experienced sadness about the expectations I once had, and, I’d like to think, I’ve found some peace. The label really changed very little. I’m still in love with my son. He has challenges and strengths like any other child. The label changed my perspective, but not my son.

Now, there are systems in place to help him and help me. We have a lovely visual, velcro daily schedule that makes our mornings more manageable. We pre-plan acceptable clothing and food choices the night before: no laces, elastic waistband, only crunchy, in the green bag. Is it a gym day or a music day? Check the calendar for the shoe or for the note symbol.

Homemade crossing guard flags
Homemade crossing guard flags

My son does what makes him happy and brings him joy, and I am learning so very much. I am learning the intricate details of the crossing guards at school. “Two whistles means flags out!” I understand exactly how to carry and to re-shelve a library book. I know the body language of wolves. We collect sticks and rocks. There are topics and activities where he is brilliant. His engagement is so palpable to me that I think he physically shines.

To say I never thought I would do these things is an understatement. I never imagined it was possible to be so focused on what could be built using only the black Lego pieces. Sometimes, I feel like I’m a visitor in an alternate world. It has many recognizable pieces, but the rules are a bit unexpected. And sometimes I am pushed to put feelings into very plain words that perhaps I would rather avoid.

I would not change my son for anything in this world. He makes me a better parent and person, bending me to meet him where he is at on any given day. He encourages me to care a little less about everyone else and to appreciate that he is having me practice safely crossing the street. I have begun to find myself thinking, “What if it were not for autism? Would I notice? Would I take the time? Would our relationship be what it is today?”

I am thankful for autism because with the label comes a better understanding of my son, and that is truly a gift.

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