The Wisdom of Over 60,000 Parents of Children with Autism

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It’s been a few short years since we launched MyAutismTeam with just 30 parents in the San Francisco Bay Area.  Today, MyAutismTeam has grown to more than 60,000 parents, making it the largest social network in the world for autism parents.

At MyAutismTeam, we believe that if your child on autism spectrum, whether they are young toddlers or young adults, it should be easy for you to connect with and get perspective from other parents just like you.  You’re not alone and you don’t have to reinvent the wheel.

The infographic below represents just a sample of what you might learn from other parents on MyAutismTeam.

MyAutismTeam is a  social network for parents of children with autism. It's free to join.

It turns out that the most common therapies families have tried also tend to be the ones viewed as most useful by the parents (many of whom have tried dozens of different therapies).   Of course given the breadth of the autism spectrum, it is not surprising to see that the most common therapies sometimes differ based on the sub-diagnosis or specific development needs of the individual with autism.   On MyAutismTeam you can search for other parents whose children share similar development needs as yours, are the same age, same gender, and even those who might live nearby.    It’s great to connect with them and share experiences.

 

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The Hardest Part of Autism Isn’t Him – It’s Other People

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lauren-casperPart of the problem with “disabilities” is that the word immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or can’t talk about their feelings? Or can’t manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the truly crippling disabilities. -Fred Rogers

This is a special guest post by Lauren Casper. It is the first in our series of stories of encouragement for autism parents.

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Last year a friend asked me if it was hard and how I manage and if I ever just want to lose it. “It” being this whole raising a child with autism thing. Of course it’s hard and of course there are evenings when I collapse on the couch or cry in the bathroom. But isn’t that true for all mothers? How do I manage? About the same as all other moms, I guess. I drink coffee every morning and hide chocolate in the sock drawer. But then she asked another question…

What’s the hardest part?” And I didn’t even have to think about it. Other people. When you’re dealing with an invisible special need, strangers don’t know about it. As much as I sometimes want to, we don’t pin a sign to Mareto’s shirt explaining his autism. So other people, particularly strangers, give us a lot of attention in the form of staring, dirty looks, snide under-the-breath comments and just overall judgment. I can feel it in the store when Mareto’s getting upset and I have to hide in an empty aisle to calm him down. Or when he can’t sit at a table in a restaurant. Or when he blurts out, “Watch out for Diesel 10!” when someone says hello.

But even the people who aren’t strangers can be hard. It’s not intentional, but unless they’ve had a lot of experience with autism, most people are largely uninformed. I get it, because up until two years ago, so were we! So when Mareto licks the wall, or laughs at inappropriate times, or sniffs random items, it can be awkward. The look of shock can sting, and I remember again that this isn’t everyone’s normal.

laurencasper These are all my issues, though. Because Mareto is unaware of these reactions, and most of the time they aren’t even directed at him. They’re directed at me. One evening my husband, John, looked at me and said, “I feel like people are thinking two things when we’re out as a family: your kid is bad and you’re bad parents.” That’s how it feels sometimes. It feels like people think we’re lazy or I’m not doing my job well and if I just tried harder he would behave differently. I felt so guilty when I realized that one of the reasons I was so excited about my other child, Arsema, being potty trained, was that people might now see that we actually are capable of potty training and it isn’t laziness that’s keeping Mareto in diapers.

But do you know what’s even worse? When you take your kids to the playground and they’re having a blast. Your little boy notices a group of older children and runs to play near them. He bends down to pick up a piece of bark and his shirt rides up, exposing the top of his diaper above his pants. And all the little kids start laughing and pointing and saying, “Look! That boy is wearing a diaper!” Or when the 3-year-old looks at you over gingerbread houses and asks why your precious, funny and brilliant little boy is so dumb. Or when you realize he’s being physically bullied because he hasn’t learned the skill of tattling yet. These are the things that make me sick to my stomach. That moment when you realize people are going to stop sneering at you and start sneering at your child hurts deep down in a way that takes the breath out of your lungs.

Now that Mareto is growing older, the differences are more apparent. They can’t be waved away or explained as typical toddler behavior. It’s a little more noticeable when a child the size of a 6-year-old isn’t potty trained. It’s a little harder to protect him from the bullies of the world. And that is now the hardest thing about autism — my inability to shield him forever from judgment, ridicule and mean children and adults.

And the thing that makes it even more mind-boggling is that he is the sweetest boy you could ever hope to meet. He cares deeply about other people. He “rescues” his sister from nap time. He comforts crying children. He loves animals. He is friendly and kind and has fun interests. Yes, he has some hurdles in life that other people don’t have. But he also has a lot of awesomeness that other people don’t have. It comes to him naturally.

So are the endless sleepless nights rough? Yes. Changing a 50-pound boy’s diaper isn’t my favorite. We’ve been working for nearly two years to get my son to move beyond his three foods. But those things don’t matter much. laurencasper Those would be the hard parts if we lived in a world where I knew my son was unquestioningly accepted — and not just accepted, but celebrated for who he is. If we lived in a world where people didn’t pass judgment so easily and were quick to love all people regardless and because of their differences, and taught their children to do the same… then the hardest parts of autism would be much different. But we don’t live in that world. And as much as I want to keep him close by my side and never leaving the safety of our home, I know I can’t. He has far too much to offer (and teach) the world for me to do that. He has a joy and innocence and compassion and love and a curiosity that is infectious. The world needs him and more people like him.

This post originally appeared on LaurenCasper.com and Huffington Post.

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A Parent’s Story of Resilience

The following is a personal story written by Amanda, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism. Below she shares the journey that her family has been on since autism entered their lives almost three years ago. If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the accomplishments!

Amanda pictureI am a stay-at-home Mom, a wife, a lover of everything that sparkles and shines, a bit of a fashionista, somewhat of a diva, an exercise addict (it keeps me sane), and a bit OCD about the cleanliness of my house. I am also the biggest advocate for my son’s needs, his biggest cheerleader and believer! But more importantly I am Mommy to two wonderful boys, who by the way, have too much energy!
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How Do You Do It All?

The following is a personal story written by Alicia, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism.  Below she shares the story of how she and her family balance the challenges and triumphs of life.  If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the accomplishments!

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Just recently I was asked by a new friend, “How do you do it?” I responded somewhat perplexed. “How do I do what?” She went on to alicia pictureelaborate, asking me how do I raise three young boys, with two on the spectrum, while living on a single income and living with the constant pain of multiple sclerosis? I honestly rarely stop to ponder my situation because honestly I see it as a way of life and not a situation. Soon after, another friend asked me this and then I began to notice the number of parents on MyAutismTeam that were asking similar questions. read more…

Our Story – My Tristan

The following is a personal story written by Juliet, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism.  Below she shares the story of her family and her son Tristan.  If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the triumphs!

He was extremely colicky as an infant. Midnight car rides almost every night, he slept no longer than a couple hours, at most,Tristan during the day, and began digestive issues as young as two months old.  Literally, my husband and I were tired and grumpy all the time hoping this stage would someday be behind us.
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Lessons on Navigating the Holidays and Family

The following is a personal story written by Kristin, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism. Below she shares the lessons that she has learned incorporating her extended family into her son’s life.  If you are a parent of child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days and bad days and the triumphs!

KristinThis time of year my favorite for one main reason—the food! Seeing extended family and getting time off from school or work is also a bonus. Sometimes spending time with your extended family can be a hassle, especially if you have different circumstances than the rest of your family.
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MyAutismTeam Reaches Major Milestone: 50,000 Parents Nationwide!

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MyAutismTeam, the social network for parents of children of all ages with autism, today announced a new milestone of 50,000 registered parents.

 

MyAutismTeam attributes the rapid growth of the social network to pent up demand and word-of-mouth amongst parents of individuals with autism, read more…