young boy with glasses on the beach

The Right Way My Son With Autism Can Help Educate Your Children

“I’m so glad you know how to behave in public,” you whisper to your child.

Only it’s not always a whisper. We hear you loud and clear. And even if we don’t hear your words, your disapproving glances convey the message.

Evan, my 9-year-old son, has autism. Until he has a meltdown, he doesn’t look any different than his typical developing peers. But then, he looks more like an out-of-control toddler than a third-grade school boy.

It’s the worst when parents use Evan’s meltdown as an opportunity to show their child how not to behave, or to reinforce their child’s exemplary behavior. While your intentions may be good, there’s a better, non-judgmental way to teach.

Instead of comparing behavior, ask your children why they think the other child is acting that way. Then, be open-minded. Maybe the child who’s having a tantrum just got hurt, he’s scared because he thought he lost his mom or any number of alternative explanations. While this may not be the reason for the child’s meltdown, at least you’re teaching your own children they shouldn’t be so quick to judge. Things are not always as they seem.

My son usually isn’t upset because I won’t let him have a cookie or because it’s time to leave the playground. It’s more likely he’s bothered by a sight, sound or smell that you or I barely notice. But to him, it’s an all-out assault on his nervous system.

Almost anything can set off a child with autism, from the sound of a fly buzzing to the smell of a banana. Some kids are bothered by the slightest change in routine. I know a girl who insists on always using a particular door to enter her school. If that door happens to be locked, she screams, cries and refuses to go through another door. Without knowing the whole story, a passerby can come to any number of incorrect conclusions.

If your child asks a question, answer it to the best of your ability. Your kids are curious and that’s a good thing. They aren’t judging. They don’t mean any harm. They are questioning something new. By avoiding their questions you’re actually showing them something is wrong. Instead, use this as an opportunity to educate your children. Often, a simple explanation will suffice.

And if can’t answer your children’s questions, it’s OK. We don’t expect you to have all the answers.

Even better, start a dialogue. You could say something like, “Hi, my name is Jen and this is my daughter Jessica. She just asked me about your son’s flapping.” By doing so, you are not asking a direct question, but instead starting a conversation and allowing the parent to respond in a way that is most comfortable for them. If you don’t want to approach them, you could say, “He was born that way, just like James was born with autism or Nathan was born with allergies.” Then you could add something your children can relate to, like, “I wonder if he likes to play with Legos, too.” This way, when your children meets someone with a disability or someone who looks different, they are less likely to be afraid.

So please, next time you see a child with “bad” behavior or physical differences, it’s OK to use him or her as a teaching tool. Just do it the right way.

young boy with glasses on the beach

A version of this post originally appeared on Special Ev


9 Things Dads of Kids With Autism Want New Members of Their Group to Know

I’d just finished talking to a group of parents at a local school about my experience raising a child with autism from babyhood to young adulthood. There was a lively Q&A session at the end with the mostly female audience. I noticed a burly man sitting toward the back. He didn’t look like he came with anyone. Our eyes connected several times during the Q&A, but he never raised his hand.

Just as the group was filing out and I was packing up to leave, the man approached me. “Can I ask you a question?” he asked. “My son is 4 and was just diagnosed with autism.” He paused, looked down at his feet, and then looked up again, his face screwed up in an effort to hold back tears. “Do you have any advice for me? How did your husband deal with it? I thought there would be more guys here…”

How my husband dealt with it was not a story that I thought would help this dad (in denial in the beginning, leaving me to do most of the heavy lifting, but now he is all in).

“I have a forum for parents on Facebook,” I said. “A lot of dads read it. Let me ask them.”

So here’s what I posted in the forum:

“Fathers of older children with autism: What is one piece of advice you would give to fathers of newly diagnosed children?”

I asked, and did I ever get insightful answers. Here’s a sampling of my favorites:

1. “Love and support your child in their dreams, interests and aspirations because they have them. Don’t ever be ashamed of them. Be proud when they slip their hand in yours as you enter a public place. Grow to love the unique way they think. And realize there are special talents inside of each one of them that will blossom if their dad cultivates it.” – Craig Curtis

2. “Man up. Be a dad, not just a father. Take your child out into the world, take them to a fenced-in playground every day when you get home from work for an hour.  Take your child to a science center, to a farmer’s market, to church, to football games. They are children and they model you. They do it differently, but they do it, so do things with them. Put their toys away when they go to sleep in an organized fashion. Stage them in social settings every night. Get time for yourself, and time for your marriage…

This was the first and best advice I got from my sons’ doctor: love your child. I have two with autism. They are doing great, both 15 years old. They are independent, playing sports, interested in friends, and just wonderful people.” – Don Sutton

3. “Accept your kids for who they are. Encourage them to be themselves; don’t force them to be someone they are not.” – Ron Junk

African American father and son hugging and laughing
Father and son hugging and laughing. Photo source: Thinkstock Images

4. “I have to keep reminding myself of the poem “Welcome to Holland.” I looked forward to baseball games and Cub Scouts. But instead, we do elevator rides and take tours of the bus barn. Things that my son is interested in. You have to change your expectations and just roll with it.” – Jason Wiederstein

5. “Love them the way any child deserves to be loved.” – Chip McInnis

6. “Go with your gut, it’s never wrong and mostly right. Don’t be afraid to cry, it’ll happen often and it helps. Stop asking “Why him?” and start asking “What can I do?” What’s right for other kids with autism isn’t necessarily right for mine. There are lots of people who want to help, and very few who know how to, so figure out who they are and accept their help. Whatever the unsolvable problem or behavior is today will be gone soon and replaced by another one.

“And… make alone time for you and your partner.” – Alex Harris

7. “The child you walked into the DX appointment with is the same one you walked out with.” A word does not change your love and commitment to that child. – John Horton

8. “Treat them like the others, with patience and understanding. Life will fill in the voids.” – Jim Odwyer

9. “Love them unconditionally. Allow them to grow. And try to keep up.” – Charles Hicks

A version of this post originally appeared on Laura Shumaker’s website.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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. Check out our “Share Your Story” page for more about our submission guidelines.

4 Tips for When Children With Autism ‘Shut Down’

You’re out shopping with your child. It’s busy, so lots of people are walking past with shopping carts and baskets. They’re all wearing different varieties of clothing, textures and contrasting colors. Some of them have on deodorant or perfume. Some don’t, but should.

There’s bright packaging and tins on the shelves, different smells of bakery bread and doughnuts. People are discussing what to have for dinner, a baby screams and someone laughs loudly. Tinny music plays, machines beep and the 50 hertz drone of the freezers hum.

The overhead strip lighting blinks 60 beats a second.

Your child silently sinks to the floor and lies down.

For most parents, their first reaction is to try to get them up. The floor’s not clean. They’re embarrassed. People tut and make a big thing of going around you with their shopping carts.

What they don’t realize is that your child with autism is grounding.

With the overload of sensory invasion, the floor begins to tilt and the room starts to sway. They need proprioceptive feedback, something cool and solid to regulate themselves on. So they do what anyone would want to do when feeling like they just got off a roller coaster — they sink down.

It’s not a meltdown or a painful sensory overload. It’s a need to regain control — to breathe and feel something solid beneath their cheek and palms as the world and surrounding environment slows down. The feeling is best described as disorientation and loss of balance, and this “shut down” typically happens in five phases:

1. Sink.

2. Ground.

3. Regulate.

4. Recover.

5. Rise.

When this happens, what should you do? Here are some tips.

1. Sit down with your child.

Yes, it’s in the middle of the supermarket/street/bank, but pulling them onto their feet before they’re ready will cause a meltdown of epic proportions.

2. Firmly rub their back and offer low words of encouragement.

This will help your child know that you are there and they are safe.

3. Help them up, but slowly.

When they are ready, sit them up and then slowly help them up. It’s best to move slowly as they may be unsteady.

4. Find a quiet place.

They need to be somewhere quiet. If that means abandoning the shopping, then so be it.

When your child with autism lies down in the street, his or she is not being naughty or stubborn. As someone with autism, I can say from my perspective it’s like being on moving floor and desperately trying to stay upright. Grounding is a way to regain that control.

8 Reasons I Don't Need to Write About What My Son With Autism Can't Do

My 4 year-old son was diagnosed with autism last February. If you’re a parent of a child with special needs, then you know what it’s like to agonize over what your child can’t do. It becomes an obsession; you imagine a life full of dreams dashed.

For this very post, I had planned on writing about how Big C can’t play catch, even though his 22-month-old brother so desperately wants to play with him.  When Big C catches the ball (on the rare occasion he does), he just runs off with it.

But I never wrote that post. Because I realized, who cares?

My son’s lack of desire or ability to play catch isn’t a deal breaker to happiness. He doesn’t care, so why should I?

It got me thinking. Instead of agonizing over my son’s struggles, what if I focused on his strengths? This is a much more productive and positive way of thinking, and it’s embarrassing to admit it took me so long to consider it. But that’s what happens to us as parents when professionals start slapping labels on our children. We get scared, we get defensive, we get deflated.

So for this post, I want to take a moment to celebrate what makes my oldest son truly special to me. This is what Big C can do:

1. My son can experience life with an intensity many long for. His moments of happiness are so amplified, he cannot help but literally shout, embrace and jump for joy.

2. My son can persevere. He gets angry and frustrated but always presses on. A month ago, he wanted to learn how to ice skate. As he grew more frustrated, I became frustrated and wanted him to stop. But he told me, “No, Mommy. We can’t give up. I have to do this!”

3. My son can melt my heart with his compliments. I was trying a dress on recently and he said, “Oh, Mommy, you look beautiful. Just like a princess!”

4. My son can show true remorse. Without fail after a meltdown, he’ll come to me and say sorry. Sometimes, it doesn’t come until the next day, but it always comes when he’s truly sorry and ready to admit it.

5. My son can pay exquisite attention to a task he is truly interested in. In recent months, he’s demonstrated his ability to play for hours with Legos, creating the most imaginative creatures, vehicles and buildings.

6. My son can feel selfless love. Whenever I catch him giving his younger brother a kiss or hug because he’s overwhelmed with emotion at that moment, my eyes and my heart swell.

7. My son gets me. Just this weekend, I had my own minor meltdown and went upstairs to cool down and take a break. My son followed me upstairs and said, “Mommy, just take a deep breath.” He then sat beside me and rested his head on my shoulder. “It’ll be OK.”

8. My son can bring tears to my eyes. If you could see me now, you’d know exactly what I mean.

A version of this post originally appeared on Contemplative Chaos.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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. Check out our “Share Your Story” page for more about our submission guidelines.

How My Autism Prepared Me for the Stage

You may ask yourself, what is a man with autism doing working at language-based theatre companies? I often ask myself that question. But I believe in theatre my “weakness” is one of my strengths.

If you see me walking down the street, I most likely have headphones on. I nearly always wear a blue t-shirt, a v-neck so nothing touches my neck. And I don’t wear coats or jackets when it’s cold out, which drives my wife crazy. I was late to speak, but I invented my own incredibly detailed sign language to communicate. I had speech therapy all through elementary school and occupational therapy all through middle school.

I am also legally blind (autism is often linked with vision or hearing problems) so I can’t perform well in cold readings. If given a few days before an audition, I always memorize sides so I don’t read them off the page. I enlarge scripts so they are twice as big, just like how all of my textbooks and tests were enlarged in school. I will often secretly record the first read-through of a play on my cell phone, hidden in my pocket, so I can learn my lines and study the script by listening. My eyes give out after about fifteen minutes of looking at a page. But because I know this, I get off book damn fast. Often before the first rehearsal.

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Tony Vo and Mickey Rowe in Out of Surface at the Eugene O’Neill Theater Center.

People with autism use scripts every day. We use scripting for daily situations we can predict the outcome of, and stick to those scripts. My job as a person with autism is to make you believe I am coming up with words on the spot, that this is spontaneous, the first time the conversation has ever happened in my life. This is also my job on stage as an actor.

For instance, at a coffee shop I might have a conversation like this:

Me: Hi, how are you doing today? (Smile.) Can I please have a small coffee? Thank you so much! (If it seems like more conversation is needed, I’ll say:) Has it been busy today?
Barista: Any barista response.
Me: Oh yeah? Is it nicer when it’s busy or when it’s slow? Have a great rest of your day!

I always stick to the script. It makes things infinitely easier.

When I’m playing Edmond in King Lear:

Wherefore should I
Stand in the plague of custom, and permit
The curiosity of nations to deprive me . . .
When my dimensions are as well compact,
My mind as generous, and my shape as true . . . [?]

It’s really no different to me. They’re lines I’ve learned, that I say often, but I’m making you believe they are mine and they’re particular to this specific moment.

These all may seem like reasons why I should never be an actor. But acting is a dichotomy — a tension between what is safe and what is dangerous.

What is known and what is unknown.

What’s mundane and what’s exciting.

There is a tension between everything I am and everything conventional for an actor. This is the same tension that makes incredible theatre. No one wants to see something if it is too comfortable. Every performance should have a tension between what feels easy and what feels risky.

When a grand piano is gracefully lowered out of a window by a rope onto a truck, slowly spinning and dangling, the tension in the rope is what everyone is watching. In theatre, the performer is the rope, making the incredible look graceful and easy, making the audience complicit in every thought, every tactical switch. When the rope goes slack, the show is over.

I put my dichotomies to work for me. It’s about doing the work and being in control so the audience trusts you to lead them, and then being vulnerable and letting the audience see your soul.

The skill, study and training help create the trust. The challenges make the vulnerability. You need both of them. As a person with autism I have felt vulnerable my entire life — to be vulnerable on stage is no biggie.

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Sarah Scafidi and Mickey Rowe in Things I Never Told My Father at the Eugene O’Neill Theater Center.

With autism comes a new way of thinking — a fresh eye and a fresh mind. Literally, a completely different wiring of the brain.

Being in front of an audience of 500 or 2,890 people is easy for me. The roles are incredibly clear, logical and laid out. I am on stage and you are sitting in the seats watching me. I am playing a character and that’s what you expect, want and are paying for. The conversations on stage are scripted and written much better than the ones in my real life.

On the street is where conversations are scary. Those roles aren’t clear.

Sure, there are lots of things working against me at any given time. For example, one in every 68 American children has autism. If all things were equally accessible, you would expect to see one person with autism in every 68 employees of any company in the US. Because small talk is so important in current interviews and auditions, this doesn’t happen. But it would happen if things were more accessible. And we can help to make it what we see in the future by acknowledging and realizing not everyone’s brain is wired the same way — by acknowledging neurodiversity exists.

A version of this post originally appeared on HowlRound

To the Family Members Who Exclude a Loved One With Autism

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Once upon a time there was a child with autism. He wasn’t “easy.” He didn’t talk like the other children in the family. He didn’t play the same games. He wasn’t interested in going to the same places — hot festivals, toy stores or noisy restaurants.

His family loved him, but he often wasn’t included. He wasn’t invited for sleepovers. He didn’t get the same special outings as his siblings or cousins. Initially, he didn’t notice. But as he grew older, he did. When they came by to pick up his siblings, he wanted to go too. When everyone left without him, he stood at the window and watched them drive away. But his family believed his parents understood – that he was too much to handle.

But he wasn’t. He was a joy. The outings he enjoyed were simple — rides in the car, trips to the grocery store, splashing in the pool, playing in the mud, swinging in the park. But, for whatever reason, he was never invited to do any of those things – the things he could do and enjoy — and kept being passed over for the children in the family who, presumably, were more fun to spend time with.

He continued to learn, develop and grow. Eventually, he knew. He knew he was different. But what he didn’t know was what the family assumed he would — that he was loved equally. That’s because love isn’t what’s declared. Love is what’s done. It’s easily identified in any language – or lack thereof. And when dispensed unequally – and obviously — it denies both the receiver and the giver.

He knows. You know. And there’s still time to do it differently.

This post originally appeared on Flappiness Is…

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