When I Have ‘the Talk’ With My Son With Autism


Dear Jack,

So, here we are. We’re having the talk.

Not really, of course. I’m just writing this letter so I can figure out what to say when we do have the talk together — the talk about autism and puberty and sex.

(You know, if you say the words autism and puberty and sex really fast to yourself over and over, it sounds a little like lions and tigers and bears from the scene in the “Wizard of Oz” where they’re all walking through the spooky woods.)

Oh my.

When I was a teenager, my mother always warned us that once we started “going all the way” with someone, we could never go back to just holding hands. That was the whole sex talk, right there. I learned the rest in bits and pieces from movies and books and whispers at sleepovers. I finally put it all together when I watched “Revenge of the Nerds” by myself on a hot summer afternoon, and I was horrified.

The day we learned you had autism, I worried about a bazillion things. Potty training. Whether or not you could ride the bus, or if you’d ever learn to read. How to get you to sleep through the night and eat wet food like peaches and point your finger to let me know you wanted juice.

And then there were things I never thought to worry about, like excessive nail-biting, which you do now, and excessive swearing, which you also do now. Anxiety, and important-sounding words like cognitive flexibility and executive functioning.

And puberty. I never, ever worried about puberty.

Jack, puberty is the time in your life when you’ll become capable of reproducing, and hair will start growing in weird places and hormones are going skyrocket through your veins like electrical currents. It can be scary and unpredictable.

You and autism do not like things that are scary and unpredictable.

In fifth grade, you watched the movie. You know, the movie.

We had the chance to pull you out of it — to ask that you skip watching it in case you weren’t ready. But I’m a coward, and so I figured it was best you learn it from the movie so I didn’t have to explain it to you myself. That’s just good parenting right there.

As soon as you got off the bus that day, you shouted, “My day was the worsted.”

“Why? What happened?”

“They made me watch. An inappropriate movie.”

“Huh.”

I didn’t ask what it was about. I didn’t ask what you’d learned from it. Like a turtle in my shell, I scuttled up the driveway and asked you what you wanted for a snack instead. That’s just good parenting right there.

Remember when we were all in the car a few weeks ago, and there was a lull in the radio and conversation, and you asked, “What is the sex. What does it mean.”

I glanced nervously at your dad, who was staring straight ahead, and from the third row of the minivan, 12-year old Joey groaned. “Can we not do this right now?”

I did a quarter-turn in my seat to look at you — I wanted to turn all the way around, but you know how I get carsick when I face backwards in a moving car — and used my best counselor-therapist-don’t-worry-we-got-this voice.

“Jack, that is a very important question. And I want to give you my best answer. So I’m going to—”

“Turn it. Back up. For the radio.”

“Absolutely!” Daddy answered and reached for the dial.

I was relieved, to be honest. I was happy to turn the radio up and let Justin Bieber’s voice fill the silence. Explaining the mechanics of sex to you scares me, because honestly, you can barely handle a two-armed hug — it’s nearly unimaginable how you’ll process the, ah, other parts of intimacy.

Although you’ve always been a little big for your age, your body, mind and body were usually in symbiotic rhythm together; they were pretty much on the same page of the development book. But now that you’re 11, your body is bustling forward like some fast-paced science fiction thriller, while your brain is still reading “Goodnight Moon.”

You usually prefer spending time with girls instead of boys. I used to think maybe you were a little confused about gender — the same way you didn’t understand why men don’t wear lipstick — but eventually I realized girls are simply easier for you. They tend to be expressive, animated, easy-to-read. They listen closely.

Unfortunately for you, Jack-a-boo, the rules are going to change soon, and if there’s anything you and autism both loathe, it’s when the rules change.

But with adolescence comes an inevitable shift in the way girls and boys interact. Teen girls turn to nonverbal cues to communicate their message: The rolling eye, the deep sigh, the barely perceptible shrug of delicate shoulders. Their code is subtle, nuanced.

Maybe I didn’t know enough to worry about puberty when the doctor first announced you had autism, but I did know enough to worry you would be lonely. Every day since then, I prayed you wouldn’t be lonely.

For a while I prayed you would find a nice, quirky girl and you would date her and eventually get married and maybe — fingers crossed — have one or two quirky children of your own. Basically, I wanted you to follow my own recipe for love and happiness — with an added dash of the unusual.

But it occurred to me about a year ago that I don’t want you to borrow the world through my lens. I want you to see it and live it and love it for yourself.

Jack-a-boo, I don’t care if love someone of a different race, or religion, or ethnicity. Man, woman, or purple-people eater, it doesn’t matter to me. It matters that you are kind to one another, that you care about one another, that you laugh until your sides ache and cry together at the same movies.

My own rules are changing. Autism has done that for me.

As for your question in the car, I never did answer you. You didn’t ask again, but when you do, I know what I want to tell you.

I want to tell you sex is the ultimate in togetherness, and it can be the most open kind of communication two people can ever have. It brings up big feelings, yet there is nothing to fear.

I want you to know how even people with supposedly neurotypical brains — brains that are wired to accept change and enjoy hugs — find sex confusing and alarming and fun and exhilarating and sad and hopeful.

If you choose, it can bring forth life.

I want to tell you how much I worry that you won’t be able to feel this kind of intimacy and closeness; that you’ll remain uninvolved and distant because you’re confused by the occasional eye roll or shrug of the shoulders.

As for puberty, well, that’s a lot like walking through the deep, dark woods. It’s scary and often lonely. There will be pimples, and at some points, you may lose your way. But on the other side is a beautiful field of bright, lovely flowers.

I won’t tell you any of this, though. Not yet, anyway.

I made the decision not to tell you when I watched you walk out the door into the cool, dark night on Halloween. You had on a Tony Stewart costume that was way too small for you because we couldn’t find one to fit someone as tall as you. The pants stopped just below your knees, and the sleeves barely made it past your elbow.

You walked out the door next to a girl in your class, Cee Cee, and just as you reached the steps she said, “Come on, Jack. We’ll stay together.”

So next time you ask about sex, I will wrap both of my arms around you and pull you close. I will remember that it doesn’t really matter if you’re reading a thriller or a children’s classic — you still have to turn the first page.

“Jack, one day, you may want to hold someone’s hand.”

Follow this journey on Carriecariello.com.

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What You Don’t Know About the Kid Eating Those ‘Unhealthy’ Foods


Many moms out there feel judged. Did you breastfeed, or was the only nipple your child knew made of silicone? Did you circumcise your son? Did you vaccinate? Is your child on a strictly organic diet, or are you just desperate for them to eat something, regardless of what it is?

I don’t think there’s a right or wrong answer to any of these questions. We are all doing our best and what we think is best for our children.

But on Facebook recently, I saw a few people ranting about the foods they saw children sent to school with and how unhealthy these foods were. They mentioned Oreos, Slim Jims, Goldfish crackers, cheese cubes, etc.

Cheyenne G.'s son

This struck a cord with me as the mom of a child who has autism, sensory processing disorder (SPD) and a carnitine deficiency. Because of his autism and SPD, my son is an extremely picky eater. If it were up to him, he would survive solely on chicken nuggets, french fries, fruit and yogurt parfaits, and fruit.

So admittedly, some days, I’m just desperate for him to eat something, regardless of how nutritious it is or isn’t. I think we all get that way, whether you’re a special needs parent or not. I think at some point, we parents just want our children to eat. And because of his carnitine deficiency, he has to eat every two hours and is on a high-fat, high-protein diet.

According to the U.S. National Library of Medicine, “primary carnitine deficiency is a condition that prevents the body from using certain fats for energy, particularly during periods without food (fasting).” Signs and symptoms often occur during infancy or early childhood and can include confusion, hypoglycemia (low blood sugar), a weakened or enlarged heart, muscle weakness and vomiting. The severity depends on the individual, but liver problems, heart failure and sudden death are risks associated with the syndrome.

So those Oreos? Maybe they’re a quick pick-me-up in case he’s showing signs of hypoglycemia. Those Goldfish? They’re a quick dash of salt and fat to help boost his energy. That Slim Jim? Easy, fast on-the-go protein. Those cheese cubes? They’re a little dose of carnitine, the kind naturally found in food, that may be the ticket to getting my child through his day.

So maybe we should dig a little deeper and be a little less judgmental — at the very least, until we know all of the details surrounding the situation. After all, “judge not lest ye be judged.”

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

Lead photo source: Thinkstock Images

This Barber Went the Extra Mile to Give a Boy With Autism a Haircut


Jamie Lewis and Denine Davies’ son Mason was diagnosed with autism a few months ago, and they were struggling to find a barber who could help their boy sit down and feel comfortable during a haircut. Because of sensory overload, haircuts are often difficult and even painful for people with autism. Hairdresser James Williams tried a number of times to give Mason a cut, but he hadn’t yet succeeded.

“Over last few month[s] I have been attempting to find different ways how to cut [M]ason’s hair,” Williams, based in Wales, wrote on his Facebook page, “[but] he wouldn’t allow me to go near one of his ears. [H]e would run away on times if he wasn’t up to it.”

Instead of forcing Mason to do something uncomfortable, one day Williams dropped to the floor with him. And after a successful cut, when Williams asked for a high five, Mason took things to the next level and offered a hug.

 

 

 

 

 

 

“I’m just glad [I’ve] been a part of the journey to put a smile on [their] faces,” Williams wrote. “Thank you for allowing me to help you guys. #‎barberlove.”

h/t Pretty52

Autistic 'Obsessions' and Why We Really, Really Need Them


Autistic people like me are known for their “obsessions.” Be it washing machines, vacuum cleaners or dinosaurs (hell yeah, dinosaurs!!), having obsessions is seen as an autistic trait.

And therefore, it’s something unhealthy. Or at the very least deficient.

Now, people who hold those kind of obsessions usually struggle to articulate why they’re so appealing, or at least in ways the other person can understand or relate to. So allow me.

What’s the difference between an interest and an obsession?

Well, to be cynical: Normal people have “interests.” Autistic people have “obsessions.”

Sometimes they are one and the same — it’s other people’s perceptions that differ. Mainly because the way we express our love for things is less “normal” than the way others do.

For example, when I was about 7, my main interest was dinosaurs. But whereas most young children would express their love of dinosaurs by pretend-roaring and stomping around the playground, I expressed my love by telling people I wanted to be a paleontologist (and telling them how to spell it), memorizing geological eras from Precambrian to Pleistocene, learning Latin words so I knew what dinosaur names meant and reaching the stage where I could grab a piece of paper and write down 91 different species by memory. (Yes, this happened when I was in first grade.)

If teachers had known about autism back then, I’m pretty sure this would’ve been an “autistic obsession,” rather than a legitimate interest.

Image depicting hobbies versus obsessions
This is pretty much my experience.

During my time in education, I ran 16 different chess tournaments in six different schools, and some of them became… er… slightly competitive. My record was running two clubs in two schools at once, each with 32 competitors. It was intense. And awesome. But mostly intense.

To those who didn’t know about my Asperger’s, my enthusiasm for chess was down to me being a chess geek. Among those who knew about my Asperger’s, there were a small number of adults I encountered who clearly believed it was an “autistic obsession” rather than honest enthusiasm like other people have.

World chess champion Magnus Carlsen, left, and Magnus Carlsen
The man on the left is Magnus Carlsen, world chess champion. He has passion, enthusiasm and talent. The man on the right is me (Chris Bonnello/Captain Quirk). He just has an autistic obsession.

Be careful before discouraging “obsessions.”

When I was 13, I was still a proud fan of Sonic the Hedgehog. Not just the games either — I was still reading Sonic the Comic, despite being “far too old” for it. There were plenty of people who wanted me to “just grow out of bloody Sonic, you’re not a kid anymore.”

But… why should I?

Back at that age I couldn’t properly express how much Sonic the Hedgehog changed my life. Thankfully now I can, so here goes.

Sonic the Hedgehog made me an explorer.

Did you ever play those awesome Mega Drive (Sega Genesis) games? There were often a dozen different ways you could reach the signpost at the end. Not only did this give the gamer plenty of reasons to play again and again, but it influenced my curiosity. I applied this to the forests outside my house until every single tree had been climbed and every cliff face ascended and descended again.

(And then I went to school, where I was told that our generation never went outside because of games consoles.)

Sonic the Hedgehog made me a writer.

If Nigel Kitching ever reads this, he needs to know he’s a hero of mine. Sonic the Comic (Fleetway Comics) taught me that even comic strips could be gripping stories in their own right. English lessons taught me the writing skills, but Sonic the Comic taught me about the heart of writing.

Sonic the Hedgehog taught me never to give up.

In the world of Sonic the Comic, Doctor Robotnik conquered the world in issue #8. Pretty heavy start. Sonic and his friends didn’t liberate the world until issue #100, three and a half years later. During those three and a half years, I watched characters I loved fighting an insurmountable foe, never giving up as long as there were people they needed to defend.

Sonic the Hedgehog comic
Doomsday… issues 97-99. I loved this story so much.

Whilst I was being told to “grow out of Sonic,” I was reading the stories, busily learning moral principles that would stay with me into adulthood — like why it’s important to stand up for what’s right even if the odds are against you.

If there’s one thing I want people to take away from this article, it’s this:

Before you encourage autistic people away from their obsessions, make sure they aren’t actually legitimate interests which are secretly doing them a world of good.

Chris Bonnello when he was young
Especially when they look this good wearing the pajamas.

If you believe in parallel universes, there’ll be a universe where I obediently cast Sonic aside. In that universe, I’m not starting an MA in Creative Writing because I never wrote all that fan-fiction that got me off the starting blocks. In that universe, I never learned how to explore everywhere, whether locally or internationally.

In that universe, I’m less willing to stand up for what’s right.

Next time you see an autistic child “obsessing” over dinosaurs and you personally don’t like it, think about the parallel universe in the future where the child doesn’t become a paleontologist.

We have the same love of things as everyone else. We just express it differently. And sometimes we rely on those interests more, especially if being popular in social groups is off the table. Losing an interest because of other people’s perceptions would simply be another reminder of why we’re not good enough.

And besides, dinosaurs are bloody awesome. Let us love them.

Follow this journey on Autistic Not Weird.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

Rutgers University Debuts First-of-its-Kind Program for Adults With Autism


Rutgers University, in New Brunswick, New Jersey, announced Wednesday its plans for the Rutgers Center for Adult Autism Services (RCAAS). To be located in two buildings on the university’s Douglass Campus, the center will offer university jobs to up to 60 adults with autism who are living off campus. A clinical staff and graduate students will be there for support.

Phase two of the project will offer a pilot residential program for 20 adults with autism who will work on campus and live with Rutgers graduate students in an integrated apartment-style residence.

“There is no other program like this at any other university,” Mary Chrow, Associate Dean for Advancement at the Rutgers Graduate School of Applied and Professional Psychology, told The Mighty. “This comprehensive residential facility, with a day program facility where we’re training our undergraduate and graduate students how to work with adults with autism, is the first of it’s kind.”

The program is potentially a solution to the dual problems of lack of services for adults with autism after they age out of the school system and lack of professionals with adequate experience and training to work with them. Rutgers intends to demonstrate how educational institutions can become part of the answer to these problems.

“I think what’s particularly unique is the training,” Chrow told The Mighty. “We think we’re going to train at least 50 undergraduate and graduate students a year, from all disciplines — education, social work, psychology and across multiple disciplines to develop expertise in working with adults with autism.”

Chrow says there is also potential for this model to be used for people with all kinds of developmental disabilities, not just autism. Plans to open the first phase of the center are set for fall of 2018, after a few years of fundraising. The project will be completely privately funded and cost a total of $35 million.

“We’d love to see other universities also take a look at what we’re doing and replicate it or work with us,” Chrow said. “We see potential in university campuses as a way to train and educate the next generation of professionals, but also to provide jobs for adults with autism who are under-served and underemployed in our society.”

 Get more on the program from the video below:

To the Woman Who Warned Our Town About the 'Scary' Trick-or-Treater


To the woman who posted this on my town’s Facebook page:

“Scary adult looking guy trick or treating with a Michael Myers outfit holding a huge fake knife!! He is by himself. Terrifying!!”

That’s my boy you’re talking about. 

While I did respond to your comment on the page with all the dignity and grace I could muster, it hasn’t really left me. My son was trick-or-treating in a costume during regular trick-or-treating hours. (The post appeared before 8 p.m.) He did exactly what other trick-or-treaters did – rang the bell, said, “Trick-or treat” and left. He didn’t do anything bad or wrong. We got him a good costume – a costume, you know, like what you wear on Halloween? Yes, he’s older than the average trick-or-treater. Is he taller than most? Probably. Though at 5’6″, he’s maybe not as tall as your post would have the good folks of our town thinking. 

What I didn’t mention on our town’s page is the fact that my son is autistic. While he is chronologically 17, he is far more sweet and innocent than most other 17-year-old boys. He has no friends to trick-or-treat with, as he has a lot of trouble with social situations. Halloween, with the protection of a costume, is a day that’s easier for him to get out and talk to people. So one of us (his parents) takes him around. He enjoys it, and it makes him happy. And isn’t that what it’s all about?

I could go on about thinking before you post on social media. About responsibility as an adult and community member. About how you don’t know him, or me, or our family. About judging from appearances. All of that is all fine and good. But maybe you just posted what others were also thinking. And I feel like I can teach you (and anyone else who might be thinking the same things) something more big-picture. 

I saw much on the Internet this year about the Teal Pumpkin Project, which is about providing allergy-safe treats for kids with food allergies. I think it’s a fine idea. There is no pumpkin for my boy, though. So to my friends, neighbors and the woman who found my son scary, next year (because he will trick-or-treat again if he wants to) – if a taller-than-normal trick-or-treater comes to your door alone, don’t be afraid. He’s actually one of the sweetest, kindest, not-a-mean-bone-in-his-body people you could ever hope to meet. You are lucky to have crossed paths with him.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.

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