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

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When a Change in Diagnosis Makes You Question Your Identity

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Last week, I received a diagnosis of autism spectrum disorder (ASD).

For those who have read my story, you’ll know this is a pretty big change for me. Prior to this, my diagnoses were generalized anxiety, eating disorder not otherwise specified (anorexic type), major depressive disorder and borderline personality disorder (BPD) traits. ASD wasn’t even on my radar until a few months ago, despite the fact that I’ve been through multiple mental health evaluations and in the mental health system for nearly five years.

I have a lot of feelings about getting a new diagnosis. I’ve noticed changes in diagnosis are actually fairly common for people who spend a lot of time in therapy. Few people have nice, easy, clear diagnoses, and it takes many people a few tries to get one that seems right. That process can often be frustrating and confusing. I’ve found it difficult to process.

I do feel some relief. This was the first diagnosis that rang true to me, that I followed up on, that I sought out for myself and that feels as if it might help to explain things that underly all the anxiety and unhappiness that tinges my life. All of my other diagnosis felt like an external framework I tried to fit myself to instead of something that emerged out of my own behavior.

I feel some worry, because I’m not the typical image of autism. I’m very far from the typical image of autism. I worry about my road going forward as a verbal, “high-functioning,” female, activist autistic. I feel confused because I still don’t feel like I can claim the identity of autistic. What if it changes again? What if it’s not quite right? It doesn’t feel like an identity in the way many other autistics have embraced theirs, as something that colors the way they see and interact with the world. Perhaps this is because I haven’t noticed all the ways it affects me yet. Perhaps it’s just that I’m really good at passing as neurotypical. I’m afraid I won’t belong to that community.

I also feel something like regret. You see, I’ve written openly about my past diagnoses in quite a few places. I’ve written about what it’s like to have BPD and how BPD affects me. But now I have the autism diagnosis. I feel a sort of fear/regret/worry I’ve been lying or misleading people about what it’s like to have BPD. I worry what at the time seemed like activism and honesty, telling people the truth of mental illness and giving others with BPD hope, turns out to have been a lie or a mistake all along.

I worry I might have caused damage when I wanted to help.

It’s easy to feel like you’ve been lying when your identity changes. This is true for all kinds of identities, from health to sexuality to a relationship. But a change doesn’t negate what happened in the past, or turn truths into lies. My ASD does not negate my BPD. I still have the BPD traits. Those still count. I didn’t lie to anyone. I was as honest as I could be with the information I had, and my identity is allowed to grow and change.

That is what I want to tell everyone who gets a new or different diagnosis. You are allowed to change, and you are still you. You can be confused about what this means for you, about what the future holds, about how this will change relationships or treatment. But you’ve done nothing wrong in telling people your past diagnosis, or seeking treatment for it, or trying to educate the world. Speaking openly and honestly about your vulnerabilities cannot be wrong.

I also want to offer hope, both to myself and to others who are getting a new diagnosis. I feel so hopeful this might offer me some relief. That I might finally have some explanations for why everything seems so frustrating and overwhelming and impossible. That there might finally be some ways to stop the things that trigger excess anxiety before they happen. For me, the autism diagnosis offers a new window into why my anxiety is out of control and gives me new roads forward. For others, new diagnoses offer new kinds of therapy or medication. New information is good.

I also want to validate to others that frustration is an important and serious emotion in these circumstances. I’ve seen nearly a dozen therapists over the course of the last ten years. Some of them I’ve worked with for long periods, others briefly, but no one has ever said the word autism to me as a potential explanation for some of my behaviors and stresses. This diagnosis, which is probably the one that gives the most information to me about how to approach myself and the world, is the only one that I’ve ever had to learn about, research, discuss and obtain for myself. The process of getting the correct diagnosis is a difficult one, and sometimes mental health professionals are not entirely helpful. Especially with diagnoses like autism and borderline, which have long histories of stigma and gender imbalances, it’s easy to get angry at psychology as a whole. It’s easy to feel like you’ve been left alone to fight for services and recognition.

The whole process once again reminds me of why I talk so openly about my mental health, because identifying and understanding these diagnoses is complicated and confusing, and it requires self-advocacy. The reason I was capable of doing this was because I have researched and learned advocacy for the past three years on this topic. Not everyone is so lucky.

So I want to offer this hope: the right diagnosis is out there. The right therapists and doctors are out there. It takes hard work and a lot of speaking up for yourself to find them. But it is possible to find the label that feels right to you. And that feels like a lot of relief.

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