5 Truths I’d Tell My Past Self About Autism

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Sophy&Son It’s been 10, 11 or 12 years since my son’s autism diagnosis, depending what you count as the start date (was it the day he was proclaimed “developmentally delayed,” “PDD-NOS” or “autistic”?). No matter the date, I’d still tell my past self these five truths:

1. Professionals will stop treating you like you’re crazy for thinking your son is autistic. Back when you started the journey, so-called experts like your first pediatrician didn’t heed your concerns or your PowerPoint-like presentations. But now, the understanding and recognition of autism has grown, so you don’t need to present the case for his autism at every doctor visit. Getting appropriate services still requires stamina, so it’s a good thing you developed your advocacy skills early on.

2. That resolution you made to have a good life with autism is one of the best things you’ll do for your son and yourself. You’ll even write about it in an NPR essay for “This I Believe.” It does give you a positive purpose, even on the hard days. It does help you appreciate the child and the life you have in the moment. It does make you grateful for the joy he brings you (spoiler alert: you will crack up with him at the emergency broadcast system).

3. Your quest to find the equivalent of a “What to Expect When You’re Expecting/What to Expect The First Year” for parenting a child with autism is a complete waste of time. Each person with autism develops in their own way, on their own path. But you will find something better: books, blogs and Facebook pages of people with autism who articulate their journeys and provide thoughtful parenting advice (especially those who become parents themselves), as do the parents of other children with autism. And your son will communicate more about his wants and, later, his thoughts. Ten years on, you will be an expert in his language.

4. While you will not be a paid full-time journalist, as perhaps you thought you’d be, you will use your journalism skills daily. You will not believe all the conflicting theories about the causes, treatments and approaches to autism you will encounter. Your ability to question, to research, to synthesize and to separate what’s valuable from pseudo-scientific manure will help ground you. As will your return to writing – on a limited basis about subjects that have nothing to do with autism (home design… who knew you’d like that?).

5. In 10, 11 or 12 years, when you look in mirror, you will be happy with the person you’ve become. You will like the person you’ve become not in spite of autism, but (in part) because of autism. There will be a time when you feel parenting a child with autism isolates you from the world at large. But then you’ll start to feel a connection with other people who struggle, other people who experience the world differently from “the norm,” other people who wake up each day grateful for, in your words, “the good life they make.”

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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What the Doctors Didn't Tell My Parents the Day They Got My Diagnosis

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Dear parents of children diagnosed with special needs: please don’t give up.

On the day of my diagnosis, there was so much they didn’t tell my parents and me. They told us everything I likely wouldn’t do. They evaluated and pointed out my struggles and challenges. Appointment after appointment, my parents heard and had to be part of conversations about what I couldn’t do and what I likely may never be able to do. Professional after professional, year after year, diagnosis after diagnosis, appointment after appointment, meeting after meeting, time and time again this repeated itself.

You see, I wasn’t diagnosed with autism as a young toddler or preschooler. Seventeen years ago, when I was 4 years old, autism wasn’t as well-known and definitely wasn’t a likely diagnosis for a little girl who talked early. When the pediatrician asked my mom if I could say a three-word sentence at age 2, I told the doctor myself: “I do that!” This was the same little girl who didn’t know how to play with other kids or toys at preschool. This was the same little girl who frequently bumped into things, the same little girl who appeared to have very little knowledge of where her body was in space, etc. I was born six and a half weeks early, 22 years ago. Doctors didn’t know then what they know now.

My mom knew something wasn’t right and she trusted her mommy gut instinct on this one. I was her first child, but she just knew there was something different about me. When I was 3 years old, we found out I was vision impaired. My parents were told I’d likely be blind by age 5 or 6. Yet, something miraculous and unexplainable happened over the years–my sight started  to get better! The eye doctor, a pediatric ophthalmologist who works at a vision center would say to us, “I really wish there were more kids like Chloe so I could do a research study!” My fifth birthday came, then my sixth and seventh and not only could I see, but I was learning to read.

I qualified for special education services through our local school district when I was around age 5. My needs were being met, I received OT and speech, special education services, a teacher for the visually impaired services, PT and more. We also continued to see a neurologist as well because there was more going on than just vision impairment. My mom continues to hear things like, “It’s possible she had a pre-natal stroke.” Then we heard developmental apraxia as our answer, followed by ADHD, followed by a sensory processing disorder and finally followed by the one that matched the best: autism.

The one thing my parents were never told was that I’d be an intelligent, bright, smart, funny, kind, caring, helpful, loving and sweet little girl who would grow up to be a young lady and use her past experiences as a way to help others.

If there was one thing I could tell parents of kids who were just diagnosed it’d be: “Don’t give up, please don’t give up, and remember, no one can predict what the future will bring. Sometimes you just have to wait and see and ride the waves of life to get there.”

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The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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Why This One Little Word From My Son’s Teacher Meant So Much to Me

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I was going through my son Matthew’s backpack when I saw an envelope in the bottom of it. Immediately, I knew it was a “thank you” card from one of his teachers or teacher assistants.  Totally not necessary since my Christmas gifts to them are my way of saying, “Thank you!”  I admit I read it quickly.  And then I stopped.

I opened up the card and read it again.  One word caught my attention.  “I love working with our Matthew.” One word. Our. That one word changed the meaning of the sentence for me.  If she had written “I love working with Matthew”,  I would know that she loves working with my son. But by adding that one word, “our,”  it meant “I love working with this boy who belongs here, is accepted here and that we all take responsibility in caring for.”

I already knew this of course, see a blog I wrote previously, but it’s always good to be reminded.  In that blog post I mentioned ten reasons why his school is the right place for him.  Since that blog we have had his IEP meeting, where I was reassured of that feeling again.  In that meeting, someone commented “Everyone loves Matthew.  We all love Matthew”.  And it was genuine and sincere.  As we went around the room and staff updated us with information about Matthew, it was apparent it went way beyond sharing what he is doing academically and behaviorally.  Each person had a unique little story or tidbit to tell about Matthew. Stories that show that they really know who Matthew is and that they get him.

In fact just today I had written a note in his communication book that it was killing Matthew to see new snow and not be able to play in it.  Later in the day I got an email and a picture of Matthew playing with snow in a big container inside the school.

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As I was reflecting on this, I realized that as a family we are really lucky because school isn’t the only place where they think of him as “our Matthew”.  It extends to other parts of our lives as well (our friends, our family, our neighborhood, and our church.)  In the interest of not turning this into a book length blog post,  I thought I would share some of the ways our church fit this description too.

Acceptance and Understanding – Matthew is accepted for who he is.  People don’t look at him funny when he starts jumping, making noises or flapping.  They understand that many of these things are his way of showing excitement.  People understand his need for touch and let him scratch their beards.  Several members have told us that they were “moved” when Matthew chose their lap as a place to sit or their hand to hold.  They don’t blink an eye when they see him coming into church with both a plastic waffle and bun from the play food in the nursery.  Every Sunday these are his two favorite items to carry around (and scratch).

Valuing – Our church goes beyond accepting Matthew.  They value him as a member. When he is in Sunday School, his teachers ask him questions, just like they ask the other students in the class.  With my support we can facilitate his response which helps the other students see him as an important member of the class too. Our childrens’ choir director knows that one of Matthew’s strengths is jumping.  So when she leads us in singing songs that involve jumping, she often does a little shout out to Matthew, letting him know to get his jumping feet ready.

Social Skills – Something that Matthew will probably always be working on are social skills.  Church is a safe place to make mistakes and learn from his mistakes.  Sunday School, Fellowship/Treat Time, Nursery, and even the worship service (i.e. passing of the peace) itself all give him opportunities to learn and grow socially.  Being invited to birthday parties of his Sunday School friends is another opportunity that he has to work on his social skills.

My hope with this blog is that even readers who have never met Matthew feel like they know him, understand, and accept him.  That to all of us he is  “our Matthew”.

This post originally appeared on Autismic.

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What I Would Have Told Myself The Day I Was Diagnosed With Autism

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Dear Kerry,

When you arrived at the hospital today, you may have thought it was just for another checkup. Over the past year now we have been very used to these visits. Going to doctor after doctor throughout the tri-state area, some with funny elephants on their walls and others with what feels like an entire toy store for you at your disposal. What will make today’s visit different than any other though is today your parents will find out for the first time that you have something called PDD-NOS, pervasive development disorder not otherwise specified, a form of autism.

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You won’t learn what those initials and autism are for six more years but what I can tell you now is that there is a long road ahead for us. There are going to be many ups and downs along the way. You’ve already had to deal with some of the downs from being non-verbal until you were 2 and a half and now having sensory integration issues, emotional difficulties, a stutter and not being able to speak in complete sentences. The emotional issues are heightened for you because more than anything, you are often in overload because of the anger you’re feeling about not being able to communicate.

I wish more than anything right now I could go back to those days of your growing up and take that anger away. That I could take that feeling of self-doubt away from you while growing up when you had those difficulties that you thought may have gone on forever.

Why can’t I communicate?

Why can’t I make friends?

Why do I scream when someone tries to touch me?

Will I ever be loved for who I am?

And then finally…

Why me?

I know the road seems dark right now but what I can tell you is this:

You will learn to communicate.

You will make friends.

You will become someone who loves to be touched to the point that you’ll even want to go to Central Park one day in New York holding a “Free Hugs” sign.

You will find out that you were loved all this time by your family, your friends and later, by several girls in romantic relationships.

And then, when you see that there is a light at the end of the tunnel, you won’t question why you have autism. You will love the fact you were put on this planet with something that you have been able to embrace, which has made you a national speaker and role model to countless in the autism community today. Because, today, you have learned what your weaknesses are and what strengths your autism brings to your everyday life–like being able to focus on key interests for long periods of time. That at other times, you will be one of the most genuine and truthful people that you will ever meet.

So, Kerry, today you may have been diagnosed with autism, and the road may indeed be long, but don’t let autism define who you are.

Define yourself.

Different, not less. — Temple Grandin

Autism is a very wide spectrum. If you’ve met one person with autism, you’ve met one person with autism. I can’t say that my story above will be similar to the next individual, or that we will see autism in the same way. What I do know though is that we were all put upon this earth with challenges to face and overcome. For everyone in our community, what I ask is that you stay true to the therapies and supports our loved ones may need and always try to do right by them.

It took me almost 16 years after being first diagnosed to see this message the way I do now. After the occupational therapy, the speech therapy and the physical therapy, I have a much different outlook, and I wouldn’t have been able to do that without our community.

Always believe great things are possible. We know more about autism than we did yesterday, and we sure will know more about it tomorrow.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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The Movie Scene That Unexpectedly Helped Me Understand My Son's Autism

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Screen Shot 2015-01-08 at 11.00.20 AM I wish I had a dime for every time someone told me my son doesn’t look autistic. No, really, I would have a pretty hefty bank account. I’ve heard it from strangers, friends and family. I’ve actually heard more than once that I’m lucky he doesn’t act as autistic as some children with autism. To some, this may seem like a compliment, but for me, I know too many amazing little people on the spectrum to think negatively when I hear the word “autistic.” I see countless videos of my friends’ children on the spectrum who are laughing and smiling and enjoying life. Granted, not every moment is easy or happy, but all families have challenging days and moments with or without autism.

Before delving into the world of autism, my husband and I were guilty of believing these stereotypes as well. We told ourselves many times that our son couldn’t have autism because he smiled and made eye contact. This is a common misconception.

Once we got the diagnosis, things started to make sense. And yet the more I learned about autism, the more I saw that it presents itself differently in everyone who has it. All of my preconceived notions regarding autism flew out the window. I used to hear people talking about a family with a child with ASD and I automatically assumed that family was sentenced to a lifelong hardship. I thought, “That poor mother. I’m so glad all of my children are healthy.”

But now that the mother is me and that is my son and this is our family, this is what I want you to know: My child is not any less because he has autism; he is more. Our days and nights might be hard sometimes, but that doesn’t mean I’m miserable or always tired. We don’t shy away from our son’s stimulations or obsessions; we embrace them, and he amazes us every day. We’re not in denial and aren’t ashamed to talk about autism. It’s a part of him and, despite its challenges, a pretty amazing part of him.

Anyone who’s been around Evan for a small amount of time wouldn’t even know he has autism if we’re having a good day. But make no mistake — years of intervention, therapy and hard work enable him to function as well as he does. After about an hour, it’s obvious that Evan is different. Whether he notices a fly on the outside of the window from three rooms away and runs to talk to it or if he’s rocking and chanting in the doctor’s office to calm himself down, the differences are there. I used to shy away from these differences, but lately I see how much it helps him regulate to rock or jump in public. I would assume onlookers would rather he do that than lay on the floor screaming because he’s overwhelmed by the fluorescent lights or the air conditioner humming. So he rocks and I smile and we go about our day.

While we were going through the process of getting a diagnosis, we happened to watch the movie “Man of Steel.” After watching the following scene, my husband and I looked at each other and we were thinking the exact same thing. Maybe this isn’t a disorder we are dealing with. Maybe our son struggles so much because he has a gift and doesn’t yet know how to reign it in. Maybe for Evan, the world is just too big.

Imagine feeling too much, hearing too much, seeing too much and smelling too much every time you walk into a room. That is life on the spectrum. And as well as he does to cope with it every day, there are days when all of it is just too much. And those are the days we power through.

But most days are full of deep pressure snuggles, tickles and a belly laugh and pure joy when surrounded by the things he loves. He’s far from Rain Man. He has autism, and he is Superman.

This post originally appeared on From the Bowels of Motherhood.

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Why I Was Proud When My Son Yelled That He Was Mad

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Boys who cry can work for Google. Boys who trash computers cannot. I once was at a science conference, and I saw a NASA scientist who had just found out that his project was canceled — a project he’d worked on for years. He was maybe 65 years old, and you know what? He was crying. And I thought, “Good for him.” That’s why he was able to reach retirement age working in a job he loved. ― Temple Grandin

The other day my son, Mareto, was getting frustrated with a toy that wasn’t operating the way he wanted. After trying several times, he threw the toy on the floor with an exasperated growl and yelled, “I get mad sometimes!” It might sound odd, but I was so proud of him in that moment. He not only identified his emotions but was also able to verbally express them to me. It was a huge victory with more room for learning.

I love that Temple Grandin quote because I think she lays it out so perfectly for everyone, not just people with autism. It’s OK to cry. It’s OK to feel sad or angry or frightened or excited or nervous or happy. Emotions aren’t wrong, even negative emotions. But in our culture we tend to encourage shoving the negative emotions down and ignoring them. We tell our toddlers not to cry or whine or be afraid. We pretend our feelings aren’t hurt when we sit on the bench the entire game. Or, worse, we blame other people and refuse to face our feelings.

Working on emotions — how to identify them and how to respond to them — is a constant exercise in our home. My son used to have to emotional reaction to everything — extreme joy or extreme sadness. He didn’t know how to identify feeling mad, so he just wailed in despair. It was the same reaction for fear, frustration and disappointment. So, over time we’ve taught him how to identify his various feelings, which is a big step for us. But it’s merely the first step, because learning the tools to respond to our emotions is just as important as identifying them.

Two years ago I remember sitting on the kitchen floor to make myself eye level with Mareto. I attempted to hold my own tears in as I tried to calm him down. He’d been violently hitting himself in the face for about ten minutes because he rubbed a little pepper in his eye. Finally I got him to stop and when he collapsed into my arms, we both cried and rocked there for several minutes. Mareto no longer hits himself out of anger, pain or fear. I never want to go back to those days.

Now that Mareto is more verbal, we sing songs (courtesy of Daniel Tiger) and we talk about our emotions and how to act when we feel each one. Instead of throwing toys, we walk away, sometimes roar a little, take a deep breath and count to four. Sometimes Mareto needs to cry, and he knows that’s OK. I always ask him if he needs a hug, and usually he responds with a nod. We draw faces on the chalkboard and practice identifying their emotions and what to do. Some days we get it right and some days we don’t. We’re learning together.

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I find that the term “differently-abled” applies strongly here. We likely all struggle to deal with our emotions in a healthy way. Mareto tends to physically overreact to his feelings, and I try to stuff mine deep inside and pretend they don’t exist. I tell my daughter not to be afraid before I remember that fear is a perfectly normal, healthy reaction. Instead of insisting she shouldn’t be afraid, I ought to be teaching her what to do when she feels scared.

In working through emotions with my children I’m reminded that it’s OK to cry and be sad sometimes. Like I sing to them, “little by little, you’ll feel better again.” It’s OK to have fears, but I still have to board the plane. One foot in front of the other, I can’t let my fear control my life. When a rude email makes me angry, I can’t fly off the handle or rant on Facebook. I need to step away (roar privately), take a deep breath and take quite a bit longer than four seconds to gain perspective. That’s why we’re learning together. Because children (special needs or not) and adults could all use some help in this area.

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This post originally appeared on www.laurencasper.com.

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