Tag Archives | special guest

Autism: Front and Center

Mike book drawingWe went to the Friday evening show of The Dinosaur Petting Zoo at the Tilles Center last week. We had to get their early to pick up our tickets for the general admission show; showing up at 4pm for a 5pm show. When other families started arriving, my wife’s first comment was “uh oh, it’s a little kid’s show”. Indeed, the overwhelming majority of children showing up for this puppet show were under 8 years old. Mike, our youngest of three and bona fide paleontologist-in-training, is 12 years old.

As if we didn’t have anything else to worry about with a child with Autism, having a child who literally towers over other children in a public venue is akin to putting a sign on his chest that screams “Look at me! I am different!” As much as parents with Autistic children will attest that they have developed thick skins, we yearn for times when our children blend in, if only for a scant minute or two. We are in fact okay with, and often celebrate our children’s unique traits and abilities, but are achingly aware of the public stigma of Autism.

Mike, as anyone who has ever met him will attest, knows everything there is to know about dinosaurs in general, and T-Rexes in particular. His room could be converted to a Jurassic Park gift shop if we ever needed a second income. His dinosaur-related DVD collection is better than most libraries. He knows how to find dinosaur toys, books, pictures and memorabilia on eBay, Amazon, Google, and lesser known websites. He has re-drawn the pages of a pirate book (“Captain Flinn and The Pirate Dinosaurs”) and replaced the human characters with his dinosaur toy friends (they each have a name, of course) with elaborate detail.

dinosaur petting zooYou get the idea.

So we progress through the show, which ends with a volunteer from the audience being asked to the center of the stage. None of the ‘little kids’ want to come up; some take a step forward, but quickly run back to their moms and dads. There are three; perhaps four kids in Mike’s age group in the audience that still hesitate at what might be in store up on stage. Mike has his hand raised patiently, waiting and hoping to be picked. His eyes never waver from the emcee. There is no fear, nor trepidation; no anxiety which often destroys the public outings of many families affected by Autism. For that brief instant, he stood out in ways those other children could only aspire to: he was without fear, and for that, he blended right in with them as they screamed with glee.

As much as dinosaurs (and to a lesser extent, crocodiles and other toothy animals) are a major focus for Mike, he is progressing; becoming more conversational, empathetic, and academic. For this we thank the tireless work of his teachers, and his brothers, and everyone who has connected with him. This outing also taught my wife and me that Mike will continue to teach us things about ourselves, and we can’t wait for more of those lessons.

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Stage Fright

My 13-year-old son Alex stands in the orange stage lights of his school’s spring talent show. He’s helping his physical therapist hold up a big sign that says either CHA CHA or DANCE. I don’t have a chance to tell which the spinning signs says before Alex vanishes stage left in the Speedy Gonzalas whirl.

“Maybe he’ll be part of your road crew next year,” I’ll tell his teacher later, after the PT escorts him back to his seat.

“He was cocooning himself in the curtain,” the PT tells me, “and we figured, ‘Not today.’” She sounds likes she’s trying to comfort me about this, and I’m trying to decide if I need to be comforted.

Alex’s school holds a talent show every year – at least they have since he got old enough to attend 6th grade. Before that, every spring they’d have a carnival of games and music and face painting and stuff like that. Alex used to run away there, too. Last year in the talent show, he drummed. Bongos. I sat there watching his face and its Matt Dillon brows and downturned W of a mouth as his para sat too close to him for it to be normal and he drummed and looked out at the lights.

What does anyone see when they look out at the lights in an audience, their stomach a knot? What did Alex, with autism, see?

The bongos came up again last summer, when Alex and I were walking home from Target where we’d bought milk and we passed a bodega store at E. 108th Street and Lexington Avenue, where a man was pounding a bongo with skill. As if waiting for Alex, a bongo sat empty next to the man, and Alex sat down. To this day, I’m not sure if anyone in the crowd cheering the man or Alex and the bongos or both understood that Alex has a problem. They cheered and told me there was no problem. And there wasn’t.

But the show this year. It started a half an hour late, which seemed like a long time to ask kids with special needs to sit, considering that some had filed in early. I kept craning for Alex’s orange hoody. When I spotted it, I assumed that under the hoody Alex was wearing the tie-dyed white T that a few weeks ago, in the “communication book” home, we were told was the uniform of his performance.

Alex’s was one of the last classes to file in. He saw me in my seat. I asked his teacher if she thought it’d be better for him if I moved. She didn’t say one way or the other. I moved anyway, and Alex kept looking for me until he found me, and I waved. “You’re on first,” I heard someone say to Alex’s class, and they went out a door. When Alex appeared in the orange lights a moment later, he was still wearing the hoody. Where was the tie-dyed T, with all the preparation behind it?

I watched him on stage; I wasn’t proud but I wasn’t ashamed, either, as I saw him bend down and bolt.


Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such asAutism-Asperger’s DigestAutism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

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Explaining Autism

I realised something today about autism. I realised that despite spending the best part of a year immersing myself in all things autism, reading every book, blog and website about the subject possible,and despite living with a four-year old autistic boy, I still really struggle to answer the simple question, ‘what is autism?’

I’ve mostly been asked this question by relatives, but variations of it crop up from all sorts of places. I’ve even been asked at work, and I work in a school. I usually begin by telling them it is a disability and a condition that affects the brain. After that, I start to struggle.

It’s not that I don’t understand autism. Since my son’s diagnosis last March I’ve come a long way in learning about it both first hand and through educating myself. My son is four year’s old and in his first year at (mainstream) school. Our story is probably very typical: at around two and a half we grew concerned about speech, communication and general behaviour. The usual struggle for diagnosis, support, and educational provision followed.  In the process I came to learn about educational statements, speech and language therapy, disability living allowance, Specialist early year’s services, Sunderland tests, social stories and countless other things. I’ve read the books and I’ve been there at every step of my autistic child’s development. It’s all well documented in my blog which you can read here.

So my difficultly in explaining autism does not stem from a lack of understanding, ignorance or, I hope, problems in expressing myself. The truth of the matter is this: how can you possibly explain autism to a person in a way that will help them understand? That will truly help them to understand the condition. How can you possibly find the right words that will help them realise what autism is like for your child and for your family?

Asking or expecting someone to understand, to really understand, is unrealistic. That’s why it is so difficult to explain what autism is. I could tell them about the triad of impairments, about the lack of theory of mind and the sensory processing difficulties. I could reel off a whole load of information about the condition. But I doubt it would really tell them anything about my son. A wiser person than me wrote, “If you know one child with autism, you know one child with autism.” The condition is so varied, affects people in such different ways, that finding an adequate, all-encompassing explanation is, I think, impossible. How could a simple explanation ever help someone understand the roller coaster ride that is life with autism (both for the child and their family)? The only way to really understand autism, and the effects it has, is by living with autism.

It is the families who live with autism themselves who know what life is really like. I am lucky in that I have a great deal of support from my family and those around me. But they don’t understand. Sympathy is not the same as empathy. For us, the best support has come from reaching out to those in a similar situation, whether it be through support groups, social networking, or blogs. That is why blogs such as this one by Stuart Duncan are so important, and it’s why I blog too.

I’d like to thank Stuart and the other contributors to this blog. By writing about the condition from the ‘inside’, you are reaching out to those in a similar situation. I expect that many people out there have no one who they can really explain autism to. This blog helps them realise they are not alone.

B’s Dad

Life With an Autistic Son

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Until He Drops

“Alex, we’re going out to get presents!”




“You’re going to buy presents for Ned and mommy. What are you going to buy for Ned?”


“Buy for Ned.”


“What are you going to buy for mommy?”


“Buy for mommy.” We go through this three times.


I’ve decided that it’s time for Alex to learn how to buy presents: walk to the store, pick out crap for those who mean something to him, walk to the register, take the bills from me, take the bag and collect his change, and leave the store. Then home to wrangle with the Scotch tape, scissors and paper until he has a present to, well, present on one of the waning evenings of Chanukah.


I head out with Alex on the morning of the day after Christmas. He’s silent to my questions as he presses the extra elevator buttons on the way to the ground floor. “What’s Santa going to bring mommy, Alex?”


“Santa mommy.”


We go through this a few times. Outside, I decide to start at the beginning. “Alex, to go shopping for presents, we need money first, right?” We head to the ATM. I slide in my card and punch the buttons while Alex studies the blue wall of the bank. “Look, Alex. Cash.” (Way too much in this year, too.) We head to the local all-purpose drug store, which these days means toys and housewares and all sorts of stuff. I steer him into the Christmas aisle, which should be cheap as hell by this time in the calendar, but isn’t. Mommy wants new icicle lights for the window.


“Alex, what does mommy want?”


“Mommy want.”


“What does mommy want?”


He shops like my brother Lee: With just a glance and then a look away, Alex shoots out his hand and pulls out, like a dragoon’s saber, a marked-down roll of Santa wrapping paper. Jill is Jewish. Of all things in this store, nothing screams “Jill Cornfield!” to me less, but this is Alex’s call.


“What do you want for Ned, Alex?” We head to the short toy aisle. Without hesitation he squats to press buttons on the preschool toys that make noise and pull out the detailed plastic farm animals. Apparently Ned wants a goat, a horse and a cow. “No Alex, this is a present for Ned.” Alex counts the plastic animals. “One, two three…”


“Up here, Alex. What would Ned like from here?” From the top shelf, the Nerf Dart refill pack would work, I think, but Alex finds a green plastic truck. Again with the Uncle Lee shopping: shoot out and pull.


“Let’s go pay, Alex.”


At the register, Alex tosses in a red bow that I’ll later examine and determine that he pulled off some display. I don’t think the cashier, with a glance at Alex, charges us for it. I put the twenty in his fingers and he hands it over; I coax him to take his change. Outside the store, he hands me the bag to carry.


I’ve never wrapped wrapping paper for a present. Alex has trouble tearing off the Scotch tape. Pretty soon, though, everything is in its paper, and Alex heads to the living room to watch the iPad. Like often in the holidays after the wrapping’s done, I’m left to think I’ve actually done something.


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The Looks

(This piece appears in the recently published Anthology of Disability Literature)

Recently, my 12-year-old Alex kept trying to scoot through an open door in the basement of our neighborhood supermarket. The store wasn’t crowded and hardly anyone noticed me hauling him back to the checkout line except a young lady working the register. I saw her looking at Alex with the small smile and direct eyes that I’ve learned mean: She knows someone with autism. She stroked his head once.

The cashier might have stroked Alex’s head out of understanding the kind of life Alex is likely to have. Of course I wish she’d felt comfortable yelling at him, comfortable because he was normal and he shouldn’t be trying to run in the basement of a grocery store, comfortable in the way somebody might be yelling at Alex’s typically developing 9-year-old brother Ned.

They don’t yell at Alex in the pizza place, either. I take him there in the fragile hope that he’ll eat the cheese off a slice or two while he’s out of the house so Ned can get his English tutoring. Alex and I often take the table way in the back, and the first few times I did this I was scared he would bolt while I got the pizza. “We’ll keep an eye on him, buddy,” the guy behind the counter said.

Alex has received his share of looks – more outside of New York City (they positively stared in the Massachusetts malls), perhaps because people are used to seeing just about anything in New York and passing by without what appears to be an obvious thought. When Alex was still a baby on oxygen, some kids on a Queens sidewalk did ask, “What happened to that guy!?” That was nice; Alex was emerging from a year in the hospital, and it was good to think he’d ceased to be patient and had finally become some “guy” on a sidewalk.

People – at least the people I’d like to have around Alex – seem to need to think there’s something beyond vulnerability to those with autism. Something special or beneficial to society, or at least likable and warm, like the message of movies like Rain Man, lessons tied up in what Richard Yates disdainfully called “a neat little dramatic package.” Yeah, there’s autism. But they can count cards, too! Some of them can count cards. Some can paint. Some with autism can do all sorts of things, just like some of all of us can, and of course the verdict is still a long way off when it comes to Alex’s real abilities. I want people to stroke his head someday because he helped them, because he contributed in a way that brought him fulfillment at the end of his working day. And I want to live to see him get that. I call that my Hopeful Outlook.

–Jeff Stimpson

Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism

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