Why My Son Is Not the Face of Autism

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“He doesn’t look like he has autism.” 

“But he seems so normal.” 

“Oh my kid does that, too.” 

Trying to advocate for my son while also attempting to raise autism awareness can be a tricky business because my personal experience with autism is limited to one person: Mareto. Yes, I know other children with autism (which wasn’t the case a few years ago), but I don’t know them or have experience with them like I do with my son. So, when I share about autism and parenting a child with autism, it’s from the perspective of Mareto’s mommy. And sharing can be frustrating because often I get responses like the comments above.

What do you say to someone who doesn’t think your child looks autistic? Does autism have a look? Yes, I suppose it does. It looks like beautiful brown eyes that sparkle in the light. It looks like a wide smile and a face that lights up with joy over the sight of a train. It also can look frightened and confused and bothered by loud noises. Autism can look like blue eyes or green eyes, blond hair or black hair or brown hair or red hair. Autism can look like eyes that never quite meet your gaze or eyes that have learned to make contact except when overwhelmed or frightened. Autism can look like diapers at 5 or potty trained by 3. Autism can look like flapping and spinning or sitting quietly with an iPad. Have you caught on yet? There is no one look to autism.

Did my son seem “normal” to you in the ten minutes you spent with him? Well, that’s nice because he is normal. He’s a sweet, normal, beautiful boy with autism. If you’re trying to tell me that you didn’t notice any signs of autism in your limited experience with him, that’s OK, too. But please keep in mind that Mareto has good days and bad days, and sometimes he has good hours and bad hours. But if what you’re really trying to tell me is that you don’t think he has autism, then please consider how hurtful that might be to us, his parents. Please consider how that might invalidate all our efforts, all our battles and all our triumphs. What you’re really implying is that we’ve wasted all our time for the last two and a half years because he’s just “normal.”

Or what about the little girl down the street? The one who doesn’t look or act like my Mareto. Her parents are concerned and have been referred to a specialist to evaluate her for autism. But she couldn’t have autism because she’s so different from my son. She doesn’t share the same struggles or act the same way. She eats just fine, and maybe she’s even potty trained. But she has her own list of quirks, and maybe it is something… but surely not autism. In comparing her to Mareto we make a common mistake. We forget that autism is a spectrum — a wide spectrum of incredible people with varying gifts, interests, looks and struggles.

There’s no one look to autism, and there’s no one face of autism. My friend’s son loves fruit, but my son is repelled by it. They both have autism. Her son is a blue-eyed, blond-haired little boy and mine is a brown-eyed, brown-skinned little boy. They both have autism. Sometimes my son makes eye contact, and other days he struggles to meet my gaze. He still has autism in each moment. Sometimes my son will play enthusiastically with other children, and other days he hides in the pantry to escape all the noise and interaction. In each scenario, he still has autism.

My son is not the face of autism.

But he is one of the many beautiful faces of autism.

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This post originally appeared on LaurenCasper.com.

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27 Thoughts Everyone Has While on the Phone With the Insurance Company

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Dealing with insurance companies is the worst. Getting on the phone to discuss your coverage can be like embarking on an epic saga filled with disappointment, confusion, stress and maybe a threat (or two).

Here are 27 thoughts everyone has while on the phone with the insurance company:

“OK, I can do this. How bad can it be?”

 

“Annnnnd, I’m on hold.”

 

“All right, it’s taking a while, but I’m sure I’m next…”

 

“This is officially taking FOREVER.”

 

“Is there even a person on the other end?!”

 

“How has this phone call not even started?”

 

“I wonder if I could just doze off a little while I wait…”

 

“Oh yeah? My call is important to you, is it?!”

 

“Somebody… help… me…”

 

“Oh, oh, oh! A human voice!”

 

“Nope. Just the voice recording again.”

 

“This crappy elevator music is rotting my brain!”

 

“Yessssss, a human voice. For real this time!”

 

“Now, let the battle begin.”

 

“I’ll ask you questions all day long if I have to. Consider this a warning.”

 

“Please, please, please say we’re covered.”

 

“Oh, I’ll show YOU what ‘medical necessity’ looks like…  “

 

“I wonder if I can bribe this person… ?”

 

“I’ve spoken to five different people and received five different answers!”

 

“You will NOT put me back on hold.”

 

“Wait, who is this? Do you even work at this insurance company?”

 

“OK, I can do this. Hang in there.”

 

“Coverage denied?!”

 

“Do not start crying. DO NOT start crying.”

 

“Maybe we don’t need insurance. I could just sell a kidney…”

 

“I’ve wasted so many hours of my life on this phone call… “

 

“Guess I’ll just try again tomorrow.”

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The Person Who Taught Me That Even If You Can’t Speak, You Can Still Have Something to Say

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Even though I was in a multi-handicapped classroom growing up, most of my classmates had ADD, ADHD, dyslexia, etc., but few had an autism diagnosis. I didn’t a peer with autism until I was a young adult. Because of that, I grew up not really grasping how wide the spectrum of autism really is.

Then I learned about Carly Fleischmann, a 20-year-old nonverbal adult from Toronto, who’s one of the leading voices we have in the autism community today. Diagnosed with autism at the age of 2 , Carly has lived with an oral motor condition that’s prevented her from speaking. While going through therapies, like many of us do on the autism spectrum, Carly found her voice through the help of a laptop. Today she has conversations and shares her thoughts via her computer and iPad. 

The first time I heard about this profound individual was when her book “Carly’s Voice: Breaking Through Autism” came out in the fall of 2012. Until then, I mistakenly considered individuals with autism who were nonverbal as people on the low-functioning end of the autism spectrum. Carly helped changed the conversation for me. I was unaware, and Carly helped opened my eyes to the abilities and brilliance of not only those who are nonverbal but those on all ends of the spectrum.

Later I would become even more aware of some of the challenges those with autism go through when Carly came out with a website called Carly’s Caféwhich shows what an individual with autism can go through when experiencing sensory overload. Much like in her book, it opened up another lens to the already wide spectrum I’d been learning about.

That’s the message I hope to leave with you today. I hope you understand that even if someone is unable to speak, it doesn’t mean they can’t communicate. Currently, it’s projected that one third of children and adults with autism are nonverbal in our community, but today some of the most brilliant individuals I know are on that end of the spectrum.

It just goes to show you, “If you’ve met one person with autism, you’ve met one person with autism.” And if you’re nonverbal, it doesn’t mean you don’t have a voice and something to say.

This blog originally appeared on Kerrymagro.com.

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When You’ve Given Up Hope That Things Can Get Better, Please Read This Letter

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To the One That Gave Up Hope,

I remember our conversation like it was yesterday. I asked you a question that I don’t think you were ready to answer. Maybe it was too soon to ask. Maybe you needed more time to come to the conclusion by yourself. It was a question I asked countless others in different situations, but your response was the one that had me thinking the most. 

I asked, “Can you tell me about the positives?”

You wrote back, “What would that do? Instill a sense of hope that things will get better?”

It took me a while to respond to you after that. It made me think a lot about the struggle we all have to believe in one another; to believe that hope can exist in this world.

Everyone’s circumstances are different, but in a society where hope can seem unattainable, it can be easy to come to the conclusion that things can’t get better. 

For me, though, hope is something I think we should all aspire to.

It was my family’s hope for me, their determination to fight for me, that led to my progress. Accomplishments that may seem small to some — like getting a job, finding a girlfriend, graduating from school — were things I could have never imagined achieving while I was growing up. 

I was put through the ringer as a kid, but hope gave me motivation — the same motivation I have today. I hope to show others, through my story, that great things are possible not only for those with disabilities but for everyone.

If you ever come across this letter, I hope you reach out to me again and let me show you the reason why things will and are getting better. I want to show you, just like my family showed me, that hope is possible and that there is someone willing to fight for you. Some days will obviously be better than others, but if you take anything from this letter I wish it’s this… 

Never close the door on hope. 

Hope helps us push through some of the toughest times in our lives and gives us the strength to get to that finish line when we don’t think anything else will. We’re all human beings who make mistakes and have to live our journeys the way they were meant to happen. 

I wish I could give you that hope now. I have enough hope for both of us, and there’s someone out there in this world who wants to be with you every day. There’s someone out there who would go to lengths unimaginable to make you see hope.

So, please, the next time you give up hope and believe things can’t get better, remember this letter. Give hope a chance now, and I promise you, if I can be there to guide you, it I will. I hope you know that now.

“We must accept finite disappointment, but never lose infinite hope.” — Martin Luther King Jr.

This post originally appeared on KerryMagro.com.

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What I Think Every Person With Autism Needs in Their Wallet

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There’s no time more stressful and dangerous than the moment a person with a cognitive or social disability, like autism, meets a police officer. The Wallet Card is a tool to help a person with autism communicate clearly with law enforcement or first responders and safely disclose their disability so the officer knows how to communicate with the card holder.

The Wallet Card is the first product of the CLARITY Campaign and is a collaboration between Disability Independence Group, The Coral Gables Police Department and The University of Miami-Nova Southeastern University Center for Autism and Related Disabilities. The CLARITY Campaign started with independent teenagers and adults who have autism spectrum disorder. It promotes heightened communication between law enforcement and persons with disabilities. As the project grows, The Wallet Card will include other disabilities.

police officer looks at wallet card of young man

This unique campaign brings together three different perspectives: professional law enforcement experience through the Coral Gables Police Department to address real-life interactions, legal expertise through Disability Independence Group to ensure that the rights of persons with autism spectrum disorders are preserved through identification and education, and experience in outreach and support to the community of persons with autism and related disabilities through University of Miami-Nova Southeastern University Center for Autism and Related Disabilities. These perspectives ensure that the card will be effective for both the person with a disability and for law enforcement.

The Wallet Card is different from other cards because it is personalized by Disability Independence Group, Inc. It includes an emergency contact name, phone number and specific traits of the card owner’s disability but is not a substitute for a valid state ID.

The CLARITY campaign has two parts. Watch a video (below) that shows teenagers and adults how to safely interact with law enforcement and first responders and then order a free Wallet Card through Disability Independence Group.

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To the Strangers Who Called Out My Daughter's Name at the Zoo

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In the summer of 2009, my daughter, Julia, who has Asperger syndrome, was 5 years old. A neighbor and I had taken our kids to the zoo. It was pretty busy that day. At one point I realized we didn’t have Julia.

She’d gone to the bathroom with some from the group but had not come back with them. There were a lot of summer school groups there that day. We were in the Africa exhibit, an extremely large area of the zoo. Our group split up and started looking for Julia. When I asked strangers if they’d seen my little girl they said no and then joined us in looking for her. Zoo personnel were on their walkie-talkies.

It seemed like hours, but it was probably 20-30 minutes later that a zoo employee told me someone had found her. We rushed to that area. A mom had found Julia, who was obviously lost, and had taken her hand and kept Julia with her as she sought out a zoo employee to report having found a missing child.

I was and am so grateful to all the many strangers who were concerned and joined us in looking for my daughter. I’m also extremely grateful to that mom who took Julia under her wing while she searched for us. That day, in the midst of my being overwhelmed, I heard complete strangers calling my daughter’s name. There were so many helpers.

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The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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