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:
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.
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.
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.
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.
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.
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.
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.
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.
I was diagnosed with autism when I was 4. I found the word a terrifying place. In some ways, it’s still a frightening place for me. But I have reached a point where I am a professional public speaker on autism.
Parents often ask me to give them advice for their children who are on the autism spectrum. There are many things parents don’t understand about their children with autism. Here are things I wish parents of children with autism would understand.
1. Autism doesn’t mean their child is lost.
This would probably apply more to parents who have younger children with severe classical autism. I’ve heard some parents say they feel like autism has taken away their child’s mind and soul and left their body behind. I’d like to help all the parents understand that their child’s mind is still in there.
When I was about 4, I mainly spoke in my own language, but I had a level of understanding to a degree. I found the world to be a terrifying place with heightened senses and frightening people. I go into more details about this in my book about my life, “Thinking Club: A Filmstrip of My Life as a Person With Autism.”
2. Don’t assume because a child can’t talk, he or she also can’t think.
This is closely related to my previous point. Some children with autism can’t talk, and there are some who will never learn to talk. However, just because they can’t talk doesn’t mean they have nothing to say. It’s important to find any way you can to communicate with them whether it’s using sign language or getting them to type out their feelings. There are also non-verbal people with autism who show extreme intelligence when they type out their words onto a keyboard.
3. You can’t predict the future.
When some parents find out their child has autism, they feel like all their hopes and dreams are shattered. They say things like, “He’ll never be independent,” “He’ll never go to college,” “He’ll never get a job” and “He’ll never get married.” They say their child is never going to have a future.
I’d like to say to parents of young children with autism that the future isn’t set in stone. If you fight for your child and give them the right support they need, you may be surprised at what they can achieve in life.
At 21, I still haven’t achieved all of my ambitions in life yet, and I still need a lot of support. But I have achieved more than I thought I would. I now have a job in public speaking to raise awareness of autism spectrum conditions. I have a lot of support from my family, but my parents never thought I’d be able to do all the things that I’m doing now when I was a 4-year-old. I just want to tell parents not to give up hope on their children’s future.
4. People with autism shouldn’t always be held back.
This doesn’t just apply to people with autism, but to people with special needs in general. I’ve known parents of children on the spectrum who do everything for them and don’t teach them to do things for themselves. They may not teach them the skills they need to succeed in life. I’ve seen teenagers or adults with autism who don’t dress themselves but clearly could if they were taught to.
Now don’t get me wrong: There are people who are profoundly autistic who may also have a profound intellectual disability, which will require them to have 24-hour care for the rest of their lives. It may be hard for people at this level to learn basic skills, but I think any child with autism should be taught the most they can be taught no matter what level they’re at.
I don’t think learning should end there, either. I think people with autism should be taught skills that will help them cope in the real world. I’m still learning to cope in the real world. I’ve been learning to get public transport by myself to places I’m familiar with. I believe that with the right level of support, the majority of people with autism can lead successful lives.
5. People with autism don’t reach a set age and stop making progress.
A lot of people think that those with autism will have reached their potential by the time they’re 16 or so. This is incorrect. Many people with autism continue to make progress way into adulthood. People on the spectrum could even get to 30 and continue making progress. Many people with autism keep on learning throughout all their lives. This is an important message for parents who feel it’s too late to help their children.
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When I published a piece on the Autism Speaks website called “Love Letter to my Autistic Son for When I’m Gone,” it clearly resonated with many people. I read every single comment on the website and Facebook page, and responded to as many as I could. The comments were both lovely, and in some instances, heartbreaking.
Many recounted their fears of what their son’s or daughter’s life would be like when they were elderly and or when they had passed away. One comment I read in the myriad of places I posted the piece stuck out to me in particular the day the piece went “viral.” In it, the reader blessed me. Then, she intimated that perhaps my son’s fate would differ from what I imagined it would be, and that perhaps one day he would become more independent than I thought. In my mind this equated to, don’t give up. I let her words roll around in my brain for a while as I tried to construct a response. Eventually, I quit.
The truth is my son is almost 12 years old. H e has two words he uses independently, namely “popcorn” and “mama,” and sometimes still uses means other than words to acquire those things. He still needs help with going to the bathroom and minimal assistance with dressing and grooming. He is one of the lights of my life, but he requires the same constant supervision he needed as an infant and toddler.
One day when his father and I are gone, unless he lives with his brother, he will potentially be in the care of people not yet born. He will likely never live independently.
And to me, accepting this does not mean giving up.
Eleven years ago when he was first diagnosed with autism, I completely wanted an independence for him. At the time I lived in a state that only offered eight hours of Early Intervention a month, rather than the 120 hours studies showed he needed if we were to ever be independent. For almost a year and a half we labored together, my small son and me, as I desperately attempted to elicit sounds from my 17-month-old, then 2-year-old, then child approaching 3. I still read those “What to Expect” books and religiously studied their milestones, often feeling despair at how much he’d fallen behind.
I don’t remember when I finally realized he likely won’t be one of those kids who no longer needs a diagnosis, or move to the milder end of the spectrum. It was more of a gentle dawning for me, a realization that marriage, college and independent living were likely not in the cards for my eldest boy. I grieved for those choices he might never have, but even then acknowledged these were life choices I had needed to be happy. My boy didn’t. This realization helped me shelve my grief and move on to accepting his probable life trajectory: school until he turns 21, hopefully some sort of meaningful employment and a life spent living with constant support.
And I realized that shedding these more “typical” dreams is not giving up. Instead, I’m being realistic about my son’s future and planning for it in the best way possible.
I understand what the woman in the comment probably meant. I don’t know exactly what the future holds for my child — none of us do. But the best gift I can give to him is valuing what he can do and putting the appropriate supports in place the best I can. I will always regret I won’t be here to see him draw his last breath. In my fantasy world I live to be 120, and Justin passes at 84. I hold his hand as he is ushered into the great unknown.
It’s good to have goals.
But as controlling as I am, I can’t make that happen. But what I can do is accept what lies before him and try to construct for him the best life possible. A life where he remains the joyful, ebullient soul that he is. A life where he is productive and safe. A life where he is loved the way he deserves.