When I Talked With My Mom About Growing Up Without an Autism Diagnosis

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My parents have always been reluctant to recognize or admit that I have a disability. It wasn’t until recent years that my mom even started tiptoeing close to the word “autism” and taking a peek at it. My dad, on the other hand, still doesn’t like to acknowledge it. And my brother, especially not… he doesn’t even think autism exists!

Right after I got my official diagnosis, I “accidentally” left a copy of the paperwork, along with an article about autism and executive functioning that came with it, out on the table. To my surprise, my mom took the bait and read it. It seemed to make a big difference, as it took away all of her doubt that I do, indeed, have autism.

So the other day in the car, I don’t exactly remember why, but I started a conversation about it. I was interested in seeing what my parents, and others, thought of me when I was a young child. (My Auntie Em mentioned that she knew something was a little off about me the first time she met me, which was when I was about 1 and a half years old. She had brought my cousin BT, who was a year older than me, to play. She noticed I didn’t really acknowledge him a whole lot… and that I was “in a capsule.” So I wondered who else had noticed something about me!)

Here’s how it went, as best as I can remember.

Me: “Was I different from other babies? Did I cry a lot?”

Mom: “For a long time you were very sick and just wouldn’t get better. You had ear infections, and then you had a horrible rash that wouldn’t go away. So you cried a lot, but it was because you were always sick.”

Me: “But was I different from Bro?”

Mom: “You and Bro were total opposites. You just had completely different personalities. Bro is a lot like me, and you are so much like your dad.”

Me: “How was I like Dad?”

Mom: “You were so quiet and serious. Most babies smile and laugh and coo. You would not. You would just sit there. Nona called you Sobersides. Sometimes we could get you to smile a little half smile.”

Me: “Bopop said that Uncle Drew and Aunt Bea would [try] to make me laugh, and I’d just watch them, and once in a while I would just sort of chuckle. But nobody thought that was a little weird?”

Mom: “We just thought you were so much like your dad.”

Me: “I learned to talk really early, right? And I learned to read early?”

Mom: “Yes, you did.”

Me: “Was there anything about me when I was a little kid that made you think I was different?”

Mom: “Not really. You made eye contact, you played with other kids and everything like that. You did used to have really bad tantrums; you’d cover your ears and scream. That was a little weird. But it didn’t really start becoming obvious until you were 8 or 9. But back then, we had never heard of autism. We didn’t know what autism was. And even if we did know what it was, there would have been no services, nothing to help us. There was nothing. In some ways I think you were lucky, because you were never labeled while you were growing up.”

Me: “But I got in trouble a lot. I got yelled at a lot.”

Mom: “Yes, there is that. And I think the reason it started becoming more obvious was because you had some really crappy teachers who picked on you right along with the kids. I remember sitting in meetings with those teachers and thinking, ‘Don’t think you know more about my kid than I do. Don’t talk that way about my kid.'”

Me: “Then why didn’t you switch me to another school?”

Mom: “Because we didn’t have the money to do that.”

And then we got home, and the conversation ended there.

It was the best conversation about autism I’ve ever had with my mom. It felt good for her to validate that it is something real, that it isn’t something I just made up for myself because I thought it would make a good story.

I sort of feel sad for the little kid who was me because I never did get any of the help autistic kids can get today. I’m not talking about “act like you’re normal” help, but things like occupational therapy and just help processing the fact that I was different, and advocating for myself.

A book that reminds me of growing up undiagnosed is Stellaluna. It is a children’s book about a baby bat who falls out of her mother’s grip while flying and falls down into a nest full of baby birds. The mother bird starts to raise the bat as one of her own, but she scolds Stellaluna for doing what she considers to be strange and even naughty things, such as hanging upside down. She says that if Stellaluna wants to stay in the family, she needs to act like the other birds and stop teaching the other birds how to do bad things. It isn’t until she finds her mother that she realizes she doesn’t do these things because she’s a bad bird — she does them because she’s a bat!

If I had grown up knowing I was not a bird at all, but a bat… if I had gotten to meet other bats and been taught how to use my bat abilities to their best… would my life have been different? I guess I will never know!

Follow this journey on Diary of an Alien.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. 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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Why Creating Artwork Helps Me as a Person on the Autism Spectrum

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Over the years, I would get stopped on campus (in high school, college and now law school) when I would sit down somewhere with my sketchbook, pencils or in some cases, colored pencils and other tools of the art trade. I wasn’t in art school, so why was I keeping busy with all of these tools while my peers weren’t? I was always a creative-type kid, and it certainly followed me to adulthood.

Individuals on the autism spectrum are talented, beautiful people with so much to offer the world around us. We’re gifted in art, music, drama, writing and so much more or a mixture of these blessings. A lot of people think being gifted in art is something I was taught or forced to like somewhere down the line, but I truly know it’s one of the many gifts I’ve received from being on the autism spectrum. Art has been one of the biggest parts of my life for as long as I could remember — my mom used to do crafts and stuff with me when I was very small, and when I was kindly asked to leave my preschool, one of the main reasons was that I scribbled with the black crayons instead of coloring in the lines, which could show you where my creativity began!

So why do I draw, paint and color? It relaxes me. It’s really that simple. It gives me the opportunity to leave the real world behind. For those of you who are in school, graduated from high school or college, or have a child in school, you should know that it’s stressful — and even more so when you have an autism spectrum disorder. I could go to anywhere quiet, put some music on that I like, sit down to draw and enter my own world, and try to make it a reality. I remember days when I was younger I’d get so absorbed in my artwork, I’d forget when it was time to eat or to respond to my mom calling for me from across the house.

Holding a pencil and making something from scratch appealed to me much more than the drama of “girl world” and most of what kind of hidden social rules school had to offer, so I relaxed myself, felt good about myself and kept on making art, and in a sense, creating my own world as well. My own world has also invited others into it, whether it be through conversation, making friends and allowing me to discover my passions.

I go out of my way to make my art, “my art.” My style is my own. It’s the perfect mixture of anime meets pop art. I’m influenced heavily by anime (but don’t watch it or read manga very much anymore), and I’m also influenced by visual pop art such as the work of Peter Max, Romero Britto and countless others. I love how anime and pop art share a big theme of happiness, and that’s what my art is — happy.

When I began writing and showing my work to the world, I realized as much as I was creating for me, I was creating to make others happy. I use plenty of colors, and colors make me happy and I try to use as many as possible without a picture looking like a hot mess because I don’t want to leave any of them out. I’ve received feedback from people all over the world telling me how my work spoke to their kids on the spectrum, and I was shocked and glad how much of an impact I could have. Now I donate a lot of my work to charities such as the Dan Marino Foundation, MAAP Services, University of Miami’s Center for Autism and Related Disabilities (UM-CARD), the Unicorn Children’s Foundation and numerous others. The charities and organizations I work with do this really cool thing where they auction or sell my paintings or prints at their galas and other events, raise money for the cause, and someone gets to have a new piece of art in their home or business. It’s a win-win for everyone: I love creating, a foundation doing great things gets money and someone gets new décor.

Let me make it clear that I have no formal training in the arts. The only training I ever had is a lot of encouragement from family to keep doing what I’m doing because I loved it. That’s one of the most important things I learned about the fabulous talents of kids on the spectrum — as a parent, it’s your job to encourage your kids to explore their interests and talents because you never know what you’ll uncover. Without the support I have
received and the motivation from my family to keep going, I don’t know if I would still be drawing, painting and trying to learn more techniques and creative things. It’s so important to be positive, and expose your kids to the many things out there and know that your kid(s) probably have all sorts of amazing gifts and talents that are just waiting to be explored and encouraged!

I hope you have a better understanding of why I personally love being a visual artist. Art has also taught me how at the end of the day, it’s for everyone, not just the artist and not just the viewer. Art creates a conversation, and my art creates a difference because someone feels happier than they were before, I feel less stressed while creating, and others throughout the nation are getting the services they need because I helped fundraise to make those things possible. It is a beautiful, positive thing to be able to do what you love and make a difference in the world around you. So go out there, explore your gifts, and if you have the ability to, use them to help make our world more awesome!

I also hope you are feeling more inspired than before, and are doing what you love, having the courage to explore your talents.

Haley creating art
Haley creating art
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To the Person Who Sees Me in the Midst of a Meltdown

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Autism, anxiety, meltdowns — all things that affect the lives of so many people. But all things that are hard to talk about.

The struggle is real; the moments are hard. Those vulnerable moments that are hard to talk about without worry and fear of embarrassment and judgment. They are real for so many people.  Yes, I don’t write about it often, because I have feelings and deserve some privacy and respect. But not writing about it does not mean they aren’t there.

So I have decided to speak up, to step outside my comfort zone and discuss it.

There are so many things I wish I could tell you while in the midst of a storm that so many refer to as a meltdown.

I wish I could tell you I’m trying. Trying oh so very hard. I wish you could see just how hard I’m trying.

I wish I was able to tell you what was bothering me, that the tears could stop and I could just tell you what’s wrong, and that my body and brain could move on. I’ve come so far, and have so many strategies, but there’s always room for progress.

At times I wish you could read my mind, figure out what’s oh so hard for me to put into words, and help make it better. Many who love and care about me have gotten good at this, but unfortunately, no one can read minds.

I hope you have the ability to look through the upset, look past the screaming, the crying, the frustration and see the real me. See a young lady who works so hard, who wants to please, is kind, caring, creative, hard working and so much more.

So please, during those hard moments in your lives or with those you love, think of this story. Think of how hard they are trying. And remember, don’t forget the great person they are. Breathe, and think and know that eventually there will be calm, moments of love and laughter. Sometimes road bumps are just part of living through the rough waves of the ocean storm. Until you then see the beautiful rainbow that is a person — a unique, beautiful individual.

Remember the happy, remember the positive, the joy — the pure, irreplaceable joy — the smiles and giggles that make your heart melt. The moments of happy that override the moments of hard. Remember we need you, as a part of our team, supporting, loving, encouraging, comforting and supporting us throughout the whole ride through the many ocean waves — the calm and the rough.

I’m blessed with such supportive, loving, caring parents, siblings, friends, family members and therapists who love and support me.

Chloe posing with the lead characters Emmett and Wyldstyle
Chloe posing with the lead characters Emmett and Wyldstyle
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Dad Starts Autism-Friendly Dinner Club for Families

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Sometimes, something as simple as a shared meal can mean a great deal.

The Zohn family loves to go out to eat together but found themselves making the effort to do it less because restaurant patrons and staff often didn’t understand their 10-year-old son’s needs. Adin, who has autism, sometimes finds restaurant settings and procedures overwhelming.

His dad, Lenard Zohn decided there had to be a better option for his family to find a more accepting environment to eat together. That’s when he had the idea for Autism Eats.

“We thought there had to be other families going through this too and we could find an environment where we could all do this successfully together,” Zohn told The Mighty.

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Zohn now organizes large dinner outings in the Boston area for families in sensory-friendly, non-judgmental environments. Often held in private rooms of restaurants or function facilities, the dinners are always served buffet or family style so there is no waiting, and the music and lighting are adjusted to accommodate sensory sensitivity. Zohn always makes sure pizza is on the menu (it’s Adin’s favorite).

The dinners happen about every three months, and eight have occurred so far. During the first one, Zohn realized just how much of a need there was for something like this in the community — more than 100 people attended.

“We were blown away by the turnout,” Zohn told The Mighty. “Subsequent dinners were averaging 60-80 people, many of them driving from hours away to attend the dinner because they want to be less isolated and want to be able to go out and enjoy something that is considered a ‘normal’ activity.”

Zohn says sometimes the dinners function as a place to share with other families about the challenges they face, but other times none of that is discussed. It’s a safe space people can use in any way they like.

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“It’s entirely nonjudgmental,” Zohn told The Mighty. “As a family attending, you don’t have to explain or apologize for any behaviors; we’re all on the same page. It’s an opportunity to share with other families or to put it on the back shelf and just have a nice dinner out.”

Zohn says people in at least 15 other states have contacted him interested in doing their own Autism Eats outings. He has plans in the future to get official non-profit status for the organization and make the dinners more frequent and in more places.

For more information, visit the Autism Eats webpage.

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Autism Advocates Campaign Against Hit Broadway Play

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Many in the autism community are taking aim at a hit Broadway play for not including autistic people.

“The Curious Incident of the Dog in the Night-Time,” based on the best-selling novel by Mark Haddon, has been a huge Broadway success. In 2015 the play, currently at the Ethel Barrymore Theatre in New York City, won several Tony Awards including Best Play.

The book the play is adapted from follows the story of 15-year-old Christopher, who is on the autism spectrum (although autism is never specifically mentioned in the book, the back cover states the main character has Asperger’s syndrome). The play uses special effects and graphics to bring the audience into the mind of Christopher. Despite autism being central to the plot, few people involved with the play have autism, including the actor who portrays the teenager.

“At the end of the day, this is a concern because the production has shown that they are not looking at perspectives of actual autistic people as a priority,” Ari Ne’eman, the president and co-founder of the Autistic Self Advocacy Network, told the Village Voice. “And in the context of a story that is all about presenting autistic people as this ‘other,’ this alien force, that’s really damaging.”

The publicity image for the play.
Screen Shot of The National Theatre’s production of “The Curious Incident of the Dog in the Night-Time” from YouTube.

The original London production of the play initially hired Cian Binchy, a consultant with autism, but his role was temporary, and he said he’d like to see the lead role played by an actor with autism some day.

“Often people with autism who have talent are not given the opportunities they deserve,” he told the Independent. “It’s vital there are more opportunities. I do hope one day learning-disabled performance art will be pushed out of the ghetto and into the mainstream.”

Last September, Alex Sharp, the lead actor in the American play, was replaced by Tyler Lea. Autism advocates say this decision was made without auditioning any autistic people for the role. When The Mighty asked whether this was true, a publicist for “The Curious Incident” refused to comment.

A young man sitting at a desk onstage.
Screen Shot of The National Theatre’s production of “The Curious Incident of the Dog in the Night-Time” from YouTube.

Discussions about the ethics of excluding the perspective central to the play cropped up on Tumblr and in the comment sections of articles like this. A Change.org petition was also started.

A publicist for the play’s production team offered The Mighty the following statement:

There has always been a policy of inclusion in the opportunity to audition for “Curious Incident.” The production encourages professional actors who self-identify as being on the autism spectrum who are interested in playing the role of Christopher to submit their headshot, resume and any relevant information about their actor training or experience to the production’s casting department for consideration to audition. Actors on the autistic spectrum have auditioned and will continue to be seen for the role of Christopher in current and future productions.

Submissions can be sent to [email protected]

Two actors onstage.
Screen Shot of The National Theatre’s production of “The Curious Incident of the Dog in the Night-Time” from YouTube.

Justin Kaiser, an autistic actor and nuerodiversity activist from San Francisco, has written articles about the controversy on theater website Howlround, emailed the play’s creative team and helped spread the word.

“As an autistic actor I know how the deck is stacked against us, especially when it comes to auditions, small talk and the relationship building necessary to receive roles,” Kaiser told The Mighty in an email. “When a play like ‘Curious Incident’ is specifically talking about our autistic minds but ignoring the feedback of the autistic community, it’s incredibly hurtful. That is why I am so passionate about this and putting my time and energy behind it.”

To Carolyn Ledesma, a woman from Portland, Oregon, who’s been campaigning against the play online, it’s an issue more easily illustrated when thought about in terms of race.

“I am a black autistic woman. I have lived both of these things and when it comes to the issue of representation I can tell you, the issue is exactly the same,” Ledesma told The Mighty in an email. “Black face isn’t OK. Yellow face isn’t OK. The fact that people feel ‘crip-face’ should be OK just illustrates the invisibility of the disabled community in the arts and how institutional ablism works to normalize things like this. If the characters are neurodiverse, then let neurodiverse people have some say in the decision about how they are portrayed on stage.”

Actor onstage
Screen Shot of The National Theatre’s production of “The Curious Incident of the Dog in the Night-Time” from YouTube.

In June of 2012, Haddon sold the rights for a film version of the book to David Heyman and Steve Kloves, the producer and screenwriter behind the “Harry Potter” films, the Telegraph reported. Autism advocates are waiting to see what kind of involvement the film will have with autistic people.

“That’s really what this is about, at the end of the day,” Ne’eman told the Village Voice. “It’s about the idea that disabled people should not be made incidental to our own stories.”

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To the Mom Who Asked If I Wish My Son Didn’t Have Autism

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Adam's artwork: a cardinal on a snowy tree branch with snow falling
Adam’s artwork: a cardinal on a snowy tree branch with snow falling

Not too long ago, I picked my son, Adam, up from his beloved weekly art class. It was a pretty typical pick-up. I found Adam, in his methodical manner, returning his brushes one by one in order of size to the container. He returned his blue apron to the same hook and rearranged the rest of the aprons in rainbow color order.

He then returned to his easel and carefully removed his art board from the clips, first the right side, and then the left side, and returned it to his art case. He finally adjusted his signature black “engineer” hat, then put on his jacket.

I have learned after many years just to be patient and wait. While he was going through his routine, another mom, who was walking out the door with her daughter, stops, takes a step back and says:

“Oh, Adam is your son! His artwork is beautiful. I would have never known that he had autism. I’ll be that you sometimes wish that he didn’t, right?”

Now, being a mom of a child with autism for almost 12 years, I am accustomed to the looks, comments, suggestions and the input of what people have “heard” and what people have “read.” I am used to smiling politely when people make “suggestions” as to what I should try, how I should “approach.” As an autism mom, you learn to develop a thick skin and learn to let a whole lot of things roll off your back. However, I have to say, this particular encounter with this particular mom really stopped me in my tracks. And it really surprised me, for I am typically not ever at a loss for words. But this time, I was. All I could do was look at her, raise my eyebrows a bit and walk out the door; and, in retrospect, I hope my lack of ability to speak at that moment was a bit more powerful than any word that ever could have exited my mouth.

That encounter happened almost two months ago. I immediately came home, opened my blog site and started pounding on the keyboard of my laptop. The fact is, anything and everything I was writing was just turning into a rant. I really didn’t feel that much better. So there my words sat… in my draft file… until now.

I read a blog post on Facebook last night entitled, “I Know What Causes Autism.” I found it a hilarious account of all of the ridiculous explanations of what “causes” autism. It really hit me in the gut, for as much as I am curious as to what may have caused Adam’s autism, in the end, does it really matter? Do I wonder sometimes why Adam is different than my two older, typical children? Of course. Do I sometimes wish my son did not have challenges? Sure, sometimes. Would not having autism mean that I would not have to:

  • make sure that every restaurant that we go to have chicken tenders and fries on the menu?
  • run around town, sometimes to four or five grocery stores in frantic search of Blueberry Pomegranate Gatorade, the only “acceptable” vessel to wash down his medicines?
  • pack up all of his favorite foods when we visit friends homes or go on a vacation?
  • hurl myself like Superwoman, shielding Adam from even a glimpse of the “evil” strawberry?
  • worry that he is being treated fairly by his peers?

When you really get down to it, these “inconveniences” are pretty typical, pretty minor and pretty insignificant. Most of you with typical children can probably relate.

But not having autism would mean that I would not:

  • have a tour guide who knows every stop in every order of every Chicago Metra train line, for I will never get lost
  • have all of the beautiful artwork that I have decorating the walls of my home
  • have a “guaranteed” clean bedroom and an organized (by color…a little excessive) closet
  • know the exact day of a week that a photograph was taken based on the color shirt he was wearing
  • know the exact date, month and year a significant (and sometimes insignificant; for instance, his sister not turning in homework) event took place
  • have two incredibly caring, tolerant, patient typical children
  • have learned to appreciate “baby steps” in order to keep the big picture in perspective
  • have the closeness we have as a family
  • have learned the true meaning of patience and acceptance

The list could go on and on…

So, “Mrs. Art Mom,” to answer your (I’m sorry, ignorant — yes, a part of me feels better) question, no, I would not trade my son for the person that he was born to be. Not for a million, trillion years.

Kimberly's family. Photo credit: Megan Guerrero
Kimberly’s family. Photo credit: Megan Guerrero

Follow this journey on Tales From the Butt.

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