The Art of Autism is a blog which features first-person perspectives, as well as parenting, therapist, physician, and other perspectives. The Art of Autism believes in empowering autistic people through the arts. Besides topical and informative blogs we offer a gallery of art and poetry and real-life exhibits, neurodiversity panels, and entertainment events.
3rd in the new series on the Art of Autism titled ‘Happy Sawyer’
By Nikki Mann
It’s like this: The build up to diagnosis feels a bit like climbing a really steep hill, without knowing what you will find at the top. The whole way up, you know which direction you’re aiming for, but you have no idea what is waiting for you, or how you’ll feel when you finally reach the top. You climb for so long that climbing starts to feel like walking and the higher you get, the less you remember about what life was like when you were still on the ground. If you’re lucky, when you reach the top you will find what you had been hoping for. You’ll be exhausted from the climb, but you will feel like it had all been worth it, and you’ll start to plan what life will be like when you find your way back to the ground again.
It’s also like this: Life immediately after diagnosis feels like you have reached the top of the hill and found what you were looking for, but before you have a chance to process what happened, someone pushes you off the edge of the cliff. Without warning, suddenly you find yourself floating completely alone, in an expanse of water so huge that you can’t begin to imagine which way you should swim first.
It took me a couple of weeks to find my purpose again after Sawyer was diagnosed. Numb is probably the best way to describe how I was feeling, closely followed by confused, guilty and alone. Now by alone, I don’t mean that I wasn’t lucky enough to have a great support system in my family and friends (I was), only that I didn’t have anyone who could understand exactly what I was going through. I was lucky enough to have plenty of people around me who would listen to me talk about Sawyer, who would hug and reassure me, and whom I knew would love him unconditionally. But I didn’t know anyone who had been told their young child was autistic, or could advise me on what to do next. And so I did what I had felt like doing for a long time, but hadn’t been able to do – I threw myself a pity party. And I sulked.
The funny thing about time spent sulking is that it does tend to be rather reflective. I had spent a very long time disallowing myself to process any feelings, or slow down long enough to think about the gravity of what was going on. I suppose it’s fair to say that I didn’t feel like I could think about the future until we had a diagnosis, which would also account for my absolute obsession with making sure we got one sooner rather than later. I admit that it sounds a bit strange now even to me, since Sawyer didn’t magically change when we finally got the piece of paper that said ‘ASD’, yet diagnosis had felt like a massive brick wall in the distance, with the future of my family hidden behind. Once the wall came down, I started to see glimpses of what life would have in store for us, and for the first time I realised – I was scared.
A multitude of emotions and thoughts washed over me during the time I spent in Sulk City. I suppose the feeling that acted as the engine for all the others was an overwhelming sense of fatigue. Imagine it like this: you have to stay up all night at work for the most important project of the year. You attack it enthusiastically, fuelled by coffee and the adrenaline buzz of the 9am deadline that you have to meet. 8.55am and you don’t even feel tired, in fact you feel amazing! You meet the deadline and make your way home from the office. Coffee wears off. Adrenaline fades, and suddenly you’re alone on the train trying desperately not to fall asleep before you reach your stop. Who knows where you could end up?
With hindsight I had taken on a lot over the years. I was a mum of 2 small children, and my youngest had taken a liking to waking up at 4.50am. Every. Single. Morning. My eldest demanded more energy than most children his age and in order to feel less guilty about being a working mum, I had taken on the role of Chairperson at his preschool playgroup. On top of that I had planned our wedding almost entirely by myself, the whole time pretending like everything was a breeze. When I look back now I think a lot of the decisions I made in the run up to Sawyer’s diagnosis were driven by guilt. I had taken on more responsibilities both in work and out, and although I wanted to do all of them, it’s an overpowering feeling to believe that you aren’t doing a particularly good job of any of them. I was too focused on Sawyer’s diagnosis to commit my full self to work; I had too much work to allow time to Chair the preschool effectively; I was too busy with all those things to spend as much time with my friends and family as I would have liked. I became the person who cancelled stuff, and I hated it.
The strange thing is, at the time I didn’t actually feel like I had too many responsibilities, despite feeling a bit drained. I just thought I was rubbish. My friends would tell me (still do) that I was taking on too much and needed to give myself a break, but I refused to listen. I think that truthfully I was taking on more and more tasks because I didn’t want to slow down and feel like I wasn’t doing enough. If I had gaps in my day then surely that would mean that I was being lazy when I could be dedicating that time to getting Sawyer’s diagnosis more quickly. Guilt. After feeling guilty about my ‘failure’ to get a diagnosis for so long, finally we had one. The coffee wore off, and I just wanted to go to sleep and sulk, but not necessarily in that order.
This next bit is difficult for me to write, but I feel like it must be said. I can’t imagine I’m the first person to ever feel like it, but I’ve never heard anybody admit to it, so deep breaths, once it’s said it’s said: In the weeks following Sawyer’s diagnosis, I felt like I was mourning the loss of a son I would never know. Done, said. Now please don’t misinterpret what I’m saying. If someone had offered to take Sawyer away and replace him with a non-autistic version I would have grabbed hold of him and ran away so fast you wouldn’t have seen us for dust. I wanted my son. The only son I had, and the only son I would ever have. What I was mourning was the loss of my son’s normal childhood (let’s not forget that Sawyer was still only 3 years old at that point). I had no idea if he would ever speak properly, make friends, go to birthday parties or enjoy cake (he still hardly ate anything). Thinking further in to the future I didn’t know if he would ever be able to endure a trip to the cinema, or go ice-skating. Would he grow up and find girlfriends, or be able to drive a car? I felt like my opportunity to raise a ‘normal’ son had been stolen from me, and so on top of feeling exhausted and scared for his future – I was angry.
Once I’d done as much crying, sulking and shouting as felt necessary, the pity party was over. I tidied up my mind and did my best to put guilt, sadness and anger back in to their boxes. What right did I have anyway? I had a healthy, amazing son who was happy, safe and loving. I’d had my time to grieve, cry, scream and shout but that couldn’t last forever, could it? I had a job to do. Sure, one task had been completed, but the work was just beginning.
Art, whether that art is music, theatre, or physical 3-D works, is always a mirror to our times.
By Kimberly Gerry-Tucker
There are analogies when referring to brains that always seems to involve electricity. I mean, instead of saying the brain is “wired,” why not refer to the complex non-sensate tangle of neural networks in our skulls as having an intricate root system, like a tree, or how about comparing the brain to a spider’s web? But electricity really is an apt description when you think it over; because of atoms, charged protons, electrons… A hundred billion or so electrically conductive, biological ‘wires’ actually existing in the brain is a lot for my brain to consider, but it’s true, in a sense. One single neuron generates a tiny amount of actual electricity. All the neurons together generate enough electricity to power a low-watt bulb. To me, that is astounding to ponder, and electrical terms like: brains being “wired differently” seems a fitting analogy. Resonating somewhere in my brain recesses, after one of my artworks is complete, are quotes like this one; from theatre practitioner, playwright, poet Bertolt Brecht:
“Art is not a mirror held up to reality but a hammer with which to shape it.”
Or this quote from Nina Simone, a 50s musical talent (think soul, R & B, jazz, etc. although she strongly resisted being categorized) who is said to have had an “androgynous singing voice”:
“You can’t help it. An artist’s duty, as far as I’m concerned, is to reflect the times.”
This is true. Art, whether that art is music, theatre, or physical 3-D works, is always a mirror to our times. I love to see group gallery shows, individual perspectives on themes and the myriad ways in which so many differently wired people can express themselves uniquely on the given themes. Personally speaking, I certainly don’t set out to make ‘statements’, but I am not living in a vacuum and the world affects me, as it does everyone. Here’s one example and it has to do with what became the #MeToo movement, because this movement was generating steam when I was creating this piece, seen here in detail and not in its entirety. This artwork started because I really wanted to do a collage with vintage Walter Foster (1891-1981) sketches I’d found, because I thought it was incredibly interesting that he signed his initials WTF, which is of course, something that has an entirely alternative meaning these days! How cool to have WTF as one’s initials! And people were saying WTF a lot, when more and more women became brave, day after day, to say ‘me too.’
So I worked some of WTF’s images into a collage of a woman who felt that her #MeToo history shattered her identity like distorted glass shards. In retrospect I noticed that the tree arms I painstakingly cut out, reaching with ominous gnarled fingers toward her broken identity, were in fact stemming from a source that surprised me, because I had collaged faces of all walks of men (WTF sketches) around the frame of the artwork. One in particular, seen here, eerily (coincidentally) resembles a creep I once knew too well.
I can’t/won’t apologize for the heaviness of this blog’s subject matter. We are all reflecting our times, good or bad. Mind you, I do enjoy painting serene landscapes like this one-
and colorful impressionistic ones too, like this one:
Once in a while, I make something like this collage below,
and I make it in 8 hours, a record timeframe for me. She is holding a paper deli ticket, which reads: ‘Your Turn is A91.’ Her lips are from a book on Artwork of Native American people. The skin on her face is cut from a porcelain perfect airbrushed model from an Avon brochure. Her eyes are from a Frida Kahlo image in a magazine. I almost named this “Through Frida’s Eyes.” Oh, okay, I will name this “Frida Is Rolling Her Eyes.” Her outfit is patchworked from a tin or two of cut-outs I have saved- sayings and sometimes just snippets of words, that resonate with me. I have tins and bins and Baggies of such phrases, like the chatter overheard in restaurants or inside the wiring of one’s own stored memories. The swirls and cartoonish hands are from a Grimm’s Fairy Tales book. Her “hair” is a jumble of puzzle pieces with pop culture food themes like brand name cookies, and that sort of ephemera.
As I said, I finished this collage very quickly. I don’t use a brush when I glue pieces, I rather like the tactile feel of glue applied with my fingers. I also didn’t purposely choose puzzle pieces to depict autism or something like that, not at all. I use puzzle pieces for the colors and they’re paper. I collect paper! When I am through collaging for the day after long sessions, snips of paper, images and words are literally scattered all over the floor. I once took a bathroom break, looked down, and saw this cut-out phrase on the floor at my feet:
(rhetorical question: if a woman laughs alone while sitting on a toilet in a closed room and no one is there to hear it, does it make a sound? It does, and it is a lovely sound, perhaps due to the acoustics caused by smooth, hard bathroom surfaces, but I digress…)
I was dissatisfied with this collage. At least at first. Here is why. I knew that the dandelion (a wish-maker) meant something personally symbolic to me, so I was okay with that; but composition in art is at least as important as symbolism, and her hair looked wrong. I decided I knew why. Look at the red, white and blue puzzle piece to the top right of her ‘hair.’ To me, it looked out of place, chaotic and unbalanced, askew, “off” somehow. It was throwing off my whole composition, I felt. To a viewer gazing on this artwork, the eyes are drawn there, to the askew red/white/blue piece off-kilter; and shouldn’t the focal point be the dandelion? Well, I thought, I have got to rework the hair so it doesn’t throw everything off.
I was ready to ‘fix’ the hair when I had a Kimpiphany. (Kim + Epiphany)
I thought, red, white and blue symbolizes our country, right? It’s the U.S. puzzle piece and it’s precariously balancing in her hair but I’m going to leave it right where it is. Because our country (our world) IS out of place, chaotic and unbalanced, ‘off’ somehow… askew; like this precariously out of place puzzle piece. And so I decided this piece had to throw off the composition. It was maybe, subliminal placement.
I couldn’t blog about art being a reflection on our weary times without mentioning this, because it is on topic and while Barbie is not necessarily ‘art,’ per se, it is a societal influence. I am a collector of the Barbies that have the new wide range of body figures, (tall, short, thin, etc.) like this “curvy” one, which I own:
I do wish the faces would change up, especially in regard to depicting individuality and diversity among people, but one can’t have everything all at once, can one? This can only be a step in the right direction. Recently, Barbie has announced yet a new line of figures. Among the new line of dolls are likenesses of Amelia Earhart, Frida Kahlo and Katherine Johnson. Imagine that, in my lifetime, a doll honoring a pilot, an artist, and a mathematician! I was saying that the world around us seems in chaos and this feels like a little bright light, as do the young adults, so many of them, finding their voices as of late. Truly listening to all voices means hearing what is being said, even when some of those messages are symbolic or even subliminal. They are all valid.
I was saying at the beginning of this blog that one neuron in the brain, alone, has less energy than a billion working together. The energy of anyone, let alone neurons (using our brains to push peace, for example) working en masse together, instead of separately, divided, alone, CREATES the capacity for an electric storm of ideas!
I never minded being called a snowflake because snowflakes, no two alike, have the capacity to create powerful blizzards. I know, I know, the blizzard metaphor is a tired one, perhaps overused, onetheless I’m leaving it in!
Kimberly, a freelance writer since 1999, has published in dozens of literary journals, anthologies and books. She ghostwrote the book Reborn Through Fire, for Glendale California burn survivor Tony Yarijanian. Kim is author of the memoir Under The Banana Moon. Her artwork has appeared in many books and on the cover of three: The Art Of Autism Shattering Myths, Sutton and Forrester’s Selective Mutism In Our Own Words. Kim mostly works from home; at art, writing, and software usability. Kim has led a collage workshop in Lee, Mass. and has done several unique video-taped presentations at Lesley College, Boston, and Hynes Center, Cambridge; where she answered audience questions through keyboard typing. Having dual Aspergers and Selective Mutism diagnoses, it is sometimes hard for Kim to speak aloud in certain environments. Her passions include dignity and acceptance for all autistics, being with her grand kids, raising insects, spirituality, peace, and care of the environment. Her artwork reflects these passions. She has three grown children (one of whom is autistic). Send Message(firstname.lastname@example.org). Kimberly is a board member for the Art of Autism.
Hello readers, have you ever felt that feeling? That really AWFUL feeling? That feeling when you feel like you are stuck in a hole and you can’t climb out? Maybe that feeling when all you want to do is lie down and just curl up and die? Or maybe that feeling when you feel like everyone is your enemy and you can’t convince yourself that they can help you? Even if they are someone you should trust? Like your mother, or your father, or any important family member? I mean like, even like your best friend in the whole world. That is hands down the worst feeling in the world.
Depression is a weird thing. Because not everyone has it. But the thing is, everyone CAN get it. But I can definitely say I am a victim of some form of depression. And I can definitely say a lot of the reasons for that were traumatic experiences online. Most of these happened when I was in high school and college. But the thing that made it unbearable is that I didn’t know how to cope with it or deal with it. I just sat in a corner, chair, bed, and sometimes would cry my heart out because of how terrible I felt. I would sit in my chair in fetal position just hating myself. Thinking I was a terrible person.
But that’s the thing. I know now I am not a terrible person. I try to be the best person I can. And the sad fact is, sometimes, my best is not enough in certain situations, and that’s what crushed me in those situations. But as I kept on growing. I realized that all my problems, all my depression issues were caused by one thing and one thing only. ME! Now, I know that’s the not the same for everyone, but I figured out that if I wanted to end my depression, I needed to have a better attitude about life in general. I needed to be confident. I needed to be brave. I needed to understand that taking risks is fine. I needed to learn from my mistakes to make my life a better experience for myself, my friends, my family, and everyone else I encounter.
The WORST THING I did that triggered depression was doubting myself. My philosophy these days is never doubt my potential which can be super hard because I have my own challenges plus the challenge of how a person with a disability like mine is perceived in the world.
I wished I had talked to my friends about how I was feeling more when I was in high school, but I was afraid to. Now I know, they probably went through some of the feelings I did. And talking about things with people can be very motivating. Having someone show they care about you and that they have a love for you in some fashion is a very uplifting feeling. I have found that if I want to be happier, in general, then I need to surround myself with people I love, that I trust, and that I care about. This always makes me feel better about myself in general and I think it will make you feel better too.
And finally. The last thing. My dear readers, you are about to learn my favorite word in the WHOLE UNIVERSE!
Whenever I felt like I didn’t want to be alive, whenever I felt like I was going to die, whenever I was depressed and couldn’t get out of it . . .No matter how bad it was…I always had one word that kept me going: Hope. It’s a beautiful word really. Say it out loud to yourself: Hope. Just saying it makes me feel like I am on a cloud. This is the word that has driven this very world to limitless possibilities. It’s what got us to the moon. It’s what invented the lightbulb. It’s what drives the progress of all humanity. Hope.
Always remember my dear readers…no matter what happens to you…you will always have hope.
My Name is Austin. I am an artist. I am an art teacher. I am a gamer. I am a storyteller and a writer. I love my community, I love my friends and family, and I am on the Autism Spectrum. My favorite game to play with my friends is Magic the Gathering. My favorite video game to play is Spiral Knights. I am a Guild Master of my Spiral Knights Guild: Altosk. I am an avid Hearthstone player.My favorite food to eat is Mexican Food. Specifically Carne Asada Fries and California Burritos. I went to Art Center College of Design for college and graduated with a degree in Illustration.
Founder of Otsimo credits his autistic brother Alper for company’s success.
By Hasan Zafer Elcik
My younger brother Alper was diagnosed with autism when he was 2 years old.
When I bought my first smartphone in 2009, I noticed Alper had a special interest in smart devices. At that time, my brother was non-verbal and could not read. He was eight years old.
I bought an iPad for him as a birthday present, but there was no tailor-made game for children with special needs. Some communication (AAC) apps were too expensive and hard to try. Other games were not appropriate for my brother because they were too difficult for him; contained ads which could be harmful; or too many colors which wasn’t good for stimuli problems. I was studying Computer Engineering back then and decided to make something unique and helpful for Alper.
I was inspired to build Otsimo, a mobile education platform for children with special needs (especially Autism). After I’ve built 4 different fundamental games and saw my brother succeed in learning colors, banknotes, and how to read and write, I decided to make a lot more fun and educational games. Our first release was in April of 2016.
Right now Otsimo has 50+ more games which are specially developed for children with special needs, aligned with ABA therapy methodology. Every game in Otsimo is certified, built with pedagogues, and contains positive reinforcement. Also, Otsimo has free and open source AAC (a communication tool for the non-speaking).
Alper has learned lots of different things from these games, and used our AAC for learning new vocabulary. He’s learned literacy and colors and shapes. He learned how to talk and now knows how to read and write. He is not exhibiting any more problem behaviors. He is happier and more connected with his family.
Our most popular game is Fruit Vegetable and our most popular app is our free AAC.
With the help of Alper, our company has now touched more than 20,000+ children’s life less than 2 years.
Hasan Zafer Elcik is the co-founder of Otsimo. He credits his brother Alper for his career and desire to help children with special needs.
The doctors informed Holly and Rodney that R.J would never say, “I love you” or participate in sports.
By Ron Sandison
On March 2nd I met Holly Robinson Peete at the 78th Annual Michigan Council of Exceptional Children Conference (MCEC) in Grand Rapids. I presented a breakout secession on Practical Insight for Parenting & Teaching Children with Autism. Holly was the keynote speaker – her message Autism Express Raising a Son with Autism.
I was impressed with Holly’s advocacy for her son R.J who was diagnosed with autism at age three. R.J and his twin sister Ryan are now twenty. R.J is famous for saying, “I may have autism, but autism doesn’t have me.”
When R.J was diagnosed with autism in the early 2000’s there were few resources and information about autism. The doctors informed Holly and Rodney that R.J would never say, “I love you” or participate in sports. R.J. was six-years-old before he began to make friends and hated physical contact. Kids bullied him ruthlessly due to his innocents. In middle school, children tricked R.J to make inappropriate comments about women’s body parts. Two bullies deceived R.J into taking fifty dollars allowance money to buy a two dollar pizza. This plan was foiled by his watchful sister Ryan.
Holly and her family felt hopeless until they meet other families who had children on the spectrum. This inspired Holly and her daughter Ryan to co-write My Brother Charlie a children’s picture book. Holly with her husband Rodney Peete a former NFL quarterback, also founded the Holly Rod Foundation, an organization dedicated to helping families living with autism or Parkinson’s disease. They also have a reality TV Show, For Peete’s Sake featured on the Hallmark network. In the clip below, Holly talks to R.J. about whether he still has autism and about friends.
RJ to Holly: "Do I Have Autism Still?" l For Peete’s Sake l Oprah Winfrey Network - YouTube
The Peetes use their Hollywood connections to advocate for autism. Holly’s dad was Gordon on Sesame Street and also a screen writer for the Cosby Show. At age five, Holly was on Sesame Street and instantly knew she wanted to be an actress. Her big break came with the ABC sitcom 21 Jump Street playing the character Vanessa Russell.
After R.J was bullied by classmates, Holly spoke to his 4th grade class about autism. She explained to his peers, how autism makes children act differently. Children with autism may have problems with sensory issues, and difficulty making friends. She also shared the great gifts R.J has like memorizing the stats of every NFL player; how R.J. can’t tell a lie; and his ability to recall thousands of facts about animals.
Holly shares practical advice for parents:
Fight for your son or daughter so that they also will learn to be an advocate for themselves
Arm yourself with information and resources on autism so you can be an advocate for your child’s IEP.
Be interested in the things that interest your child. “When R.J was interested in animals we became interested in animals as well.”
R.J is currently working as the clubhouse manager of the L.A Dodgers. He still loves animals especially his twelve year old blind service dog.
Holly shares, “Almost every parent of a child with autism that I’ve met on our family’s Autism Express journey shares the same fears and hopes. We pray our teenagers will transition into adulthood with self-reliance, have a safe place to live, and a job with a compassionate employer. More than anything, we want to be assured that our kids will develop the ability to self-advocate, and that they’ll find a trusted community.”
Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is a Board Member with The Art of Autism and an advisory board member of Autism Society Faith Initiative of Autism Society of America. Sandison has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom published by Charisma House. He has memorized over 10,000 Scriptures including 22 complete books of the New Testament and over 5,000 quotes.
He frequently guest speaks at colleges, conferences, autism centers, and churches. Ron and his wife, Kristen, reside in Rochester Hills, MI, with a baby daughter, Makayla Marie born on March 20, 2016. You can contact Ron on his website spectruminclusion.com or email Ron at Sandison456@hotmail.com.
“Haider draws about a hundred drawings a day without pre-thought or plan,” Khalid Zalloum, Haider’s father
By Khalid Zalloum from emails to Keri Bowers
At age 3, I decided Haider must talk. I realized through observation that he would make full eye contact of a video of me talking to him through a mobile phone screen, but was unable to sit still to look and learn from me.
Instead, Haider was mesmerized by me talking from behind a window; a phone screen. Something about this caught his attention, but the moment the glass screen was gone, so was his interest. It was then I decided to teach and talk to him through my mobile phone.
With little knowledge of autism, I learned everything I could through the internet and then created a game plan for my son. This plan revolved around speech, language, and cognition.
I figured if Haider learned the meaning of things ~ of everything ~ he would not have a reason not to talk. I was guided to follow my instincts. I took a camera and videotaped his everyday world, including all the things he needed to know.
I once read that an autistic child thinks in concrete terms to where if he saw a picture of a black door and learned that this is a door, then he might not realize that a blue metal door is a door. With that in mind, I took pics of different types of doors, lamps, seats, cars, and everything else I could think of. If I’ve said it once, I’ve said it twice, and then at least three times…
“Haider will respond to videos of himself in the real world. He will ‘see’ not just ‘hear’.”
Haider memorized the video verbatim. In perfect sequence, he verbalized each item 3 times as I did in the video. Haider had found a window to words. So, he was shown a literal window and asked “What is this?” he would say “window … window… window.”
I did not see this coming. Not one wonderful bit of it.
We lived in Jordan and because most therapists there did not speak English, I took it upon myself to teach Haider Arabic; my first language. English is my second language. I will share his story and the video that changed his world with you if you like…
Here is the famous video that started out his speech. You will learn Arabic from this if you want LOL.
June 6, 2011 6:54 PM - YouTube
I also share Haider’s art with you. Haider is able to capture the world around him through his interpretive drawings. He shares his interests, perspectives, and desires through the imagry he creates. These works do not require language; only an observer to interpret their own meanings to the images they behold. As for so many others, art is a gateway to possibilities for Haider. His art speaks for him louder than words ever could.
An interview with Joe Biel, founder of Microcosm Publishing, and author of “Good Trouble: Building a Successful Life & Business with Asperger’s”
What age were you when you were diagnosed with Aspergers?
I was 32 when I was first diagnosed with 99% certainty and I was 37 when I received a gold standard diagnosis. I really wanted to be sure because so many things in my life were “Well, it’s probably this but we aren’t completely sure.”
Can you tell me what your diagnosis means to you?
I felt like my life really began that day. Suddenly, everything in the rearview mirror made sense and I slowly began to master executive function. Previously I felt like things happened to me. I felt ike I had to go along with impositions from other people because they would insist that I was not adhering to social norms. My diagnosis allowed me to realize, for the first time, that I need to have agency in my own life rather than allowing things to happen to me. It also taught me that I had an ongoing problem hearing nonverbal expressions of people’s boundaries. In this way my diagnosis offered me a road map to taking care of people that I care about. It has been really powerful, like a slow light going on, gradually illuminating a giant field behind me. This revelation allowed me to modify how I interacted with others and create much more stable relationships in my 30s. I began the longest relationship of my life, which I am still in.
You wrote a book about running a successful business and life with Aspergers. Can you give our readers with Aspergers advice?
I think the best advice I have is to do is to develop awareness about yourself. Learn about your stimulus and triggers and overwhelm. It can be very upsetting to be in certain environments and we can’t always prevent our emotional reaction to certain things so awareness can let us know how to prepare ourselves, what to avoid, and what kind of clothing to wear. I found that my coping mechanism through my 20s was to bluster through life but in hindsight, that wasn’t a very good strategy because it left a lot of chaos in my wake. Similarly so, I think it’s important to be aware of others as much as that is also a real challenge for us.
Can you tell me how Microcosm Publishing started?
I grew up in Cleveland during the bankruptcy and recession in the 70s and 80s. My upbringing was violent , I wasn’t educated, and in many ways I had to figure things out and fend for myself. Fortunately, I had role models that I met as a teenager who led me to my artists in art, music, politics, and publishing. As a kid, I was desperately lacking necessary resources that I needed to be a functional person. I had a daily drinking problem with alcohol from age sixteen until 21. I could see that crime was the easiest path for someone like me. I drunkenly confided to a peer at the punk club that I was involved with as a teenager that I was going to start something. Soon thereafter, I began creating the kind of resources that I needed as a child about gender, mental health, grassroots organizing, punk rock, history, queerness, political power, race and class, and analytical skills. I founded Microcosm with any money leftover from my job delivering pizzas. Microcosm was a matter of desperation; of nothing meaning anything at a time when I desperately needed it to.
We have a comic about our backstory, where the publishing industry is portrayed as dinosaurs and our staff are the rats. I wrote a book, Good Trouble that details this history in greater depth.
Microcosm Publishing believes in using “neurodiversity as a superpower.” Can you explain what that means?
I recently read a story about an autistic therapist who has clients seek her out from all over the world. She speculates that this is a result of discarding or ignoring industry rules that don’t make sense to her and the fact that she takes in 400% more stimulus than her neurotypical counterparts. She can control her environment, more or less, and claims to be able to notice if a client is pregnant the day after they’ve had sex. She isn’t psychic. She’s picking up on changes and cues in her environment and her clients are responding positively. This resonated so powerfully with me because it’s exactly how I interact with my own work because I’ve learned how to discard static noise for signal and latch onto a great idea.
Facts are my religion and I am now able to understand my emotions while not wrapping my decisions around them. I learn new things daily and can absorb news and mathematics as applicable to my life and to adjust my decision making as a result. I never stop learning and I can make logical decisions and find hyper-efficient workflows that feed into my own meaning and purpose.
I believe in the Intense World Theory—thanks to a reviewer of my book—which states that autistic people experience 400% more stimulus than neurotypicals.
Since understanding and accommodation are outside of our locus of control, we can focus on our own coping mechanisms. This allows us to experience and process much more information and see patterns before others. I discard or ignore rules that don’t make sense to me. We’re engaged with the data and emergent patterns in a more involved way and I cultivate this in the staff.
Since autistic people only understand other people’s experience through an involved, years-long process of active learning and intellectual application of ideas, I believe that it allows us to be much more in touch with our emotions as well as others’. For example, I don’t need to seek sympathy because I learned from a young age that this is not something available to me; neurotypicals cannot relate with my experience. As a result, I believe that I’m more in touch with my emotions, which leads me to cognitively access my meaning and purpose and executive function. I had to develop a thick skin while still being considerate of others.
Being autistic leads me to be plenty stubborn and to really enjoy the challenge of the changing landscape in publishing. I now understand the role of my own meaning and purpose and see suffering as opportunity instead of pain. We use data to make decisions in a pretty intense way and communicate internally more like a technology company than a publisher. Creative projects move quickly through a pipe with everyone offering feedback and giving their touches.Our sales are growing by 50% this year at a time when other publishers our size reprint shrinking revenues.
What type of submissions do you take?
All of our books originate from a single point of criteria: “Does this book empower the reader to make positive changes in their life and in the world around them?” If so, our staff does a thorough comp analysis and finds if demand and a niche exists.
We only publish nonfiction books but we aren’t terribly concerned about what subject or shelf the book will land on otherwise. We publish about 20 books per year so variety helps to keep our staff learning and interested.
Our mission was a way for a depressed kid without options in life to find meaning and purpose in the world. Since then I’ve met a lot of other depressed kids without options and we’ve been able to grow together and create change.
What I didn’t count on is that because of my editorial focus and interests, the majority of our customers are low income women of color below 30. In hindsight, this was an audience that few people were speaking to or respecting so, in a way, it makes sense that they latched on so hard to Microcosm. And having autism, I can totally relate to few written works respectfully speaking to my experience or goals. And now, 22 years later, this is called the “diverse books movement” which is now adopted by the industry as a priority, though very few publishers feel comfortable putting their toe into the water first because they are more comfortable communicating with people who look, think, and act like they do.
We are now engaged in an active campaign to make the publishing industry bear closer resemblance to the global population rather than just the elite group that it currently represents. We are doing this through our own publishing list as well as through our activism and education campaigns. We are trying to teach more presses how to be vertically integrated as to not rely on monopolies that do not have any community investment in others’ success.
Every day, I continue to think of Microcosm like the punk band Black Flag on their tours in the early 1980s that ultimately created a DIY touring network for punk bands. We’ve organized similar
book tours and recently made a board game about that.
Anything else you would like to share with our readers?
1) It gets better, whatever “it” is. But you have to take an active role in your own life and decisions rather than waiting for external forces to change.
2) If you’re writing a memoir, figure out what benefits or emotional payoff that book offers to the reader and frame the book around those issues rather than about your identity or story. Please. For your own sake. There are currently more memoirs being released than novels.
3) Self-publishing is an inherently limited marketplace. For most books, it’s the death of the title with average sales hovering around 100 copies. Since some books sell in the hundreds of thousands, that means that plenty of others sell literally zero. You’d have better odds playing the lottery. If you want to get published, follow these instructions instead. The money isn’t great in publishing but that’s not why anyone does it. If money is your motivation, work in software and write on the weekends.
Joe Biel is a self-made #ActuallyAutistic publisher and filmmaker who draws origins, inspiration, and methods from punk rock. He is the founder/manager of Microcosm Publishing and co-founder of the Portland Zine Symposium. He tours with his films on the Dinner and Bikes program and has been featured in Time Magazine, Publisher’s Weekly, Utne Reader, Portland Mercury, Oregonian, Broken Pencil, Readymade, Punk Planet, Profane Existence, Spectator (Japan), G33K (Korea), and Maximum Rocknroll. He is the author of Good Trouble: Building a Successful Life & Business on the Spectrum, Manspressions: Decoding Men’s Behavior, Make a Zine, The CIA Makes Science Fiction Unexciting, Beyond the Music, Bamboozled, Bipedal, By Pedal, and more. He is the director of the documentaries Aftermass: Bicycling in a Post-Critical Mass Portland, If It Ain’t Cheap, It Ain’t Punk, Of Dice & Men, $100 & A T-Shirt, and the Groundswell film series. The Journal of Adolescent & Adult Literacy described Biel as “not trained in pedagogy.” His work can be found at joebiel.net
The ABC miniseries “The Good Doctor,” which has become an extremely popular television show of late, features the English actor Freddie Highmore as Shaun Murphy, a young medical genius with “high-functioning autism” and Savant Syndrome. In the TV Series, Shawn is hired at a San Jose, California hospital as a surgical resident over the objections of the majority of the hospital board. The hospital’s president, Dr. Glassman (ably portrayed by Richard Schiff), a father figure to Shaun since the latter’s childhood, stakes his professional reputation on his young protégé’s prospective success and insists that the hospital hire him, declaring that he will resign as president in the event of Shaun’s failure.
While Shaun is initially shunned by most of the hospital staff and given the menial task of “scut work” by the supervising surgeon Dr. Melendez (portrayed by Nicholas Gonzalez) who visibly feels professionally threatened by him, he builds a close rapport with Claire Browne (portrayed by Antonia Thomas), a fellow surgical resident who develops a strong sensitivity and empathy toward Shaun while learning to navigate his difficulties with social interactions. Over the course of his work at the hospital, Shaun repeatedly demonstrates his genius as a surgeon and plays an important role in cases with different patients while struggling to gain acceptance from the hospital staff and the families of patients due to his social challenges as an individual on the autism spectrum.
Among the strengths of “The Good Doctor” is Highmore’s highly sensitive portrayal of an individual with autism. Although some critics may point out the representational problems of casting a neurotypical actor in the role of an autistic protagonist, Highmore displays superb versatility in capturing Shaun’s social challenges and conveying them with both striking accuracy and emotional depth. Through this portrayal, the miniseries highlights many of the characteristics associated with autism, including the tendency to interpret statements literally and at face value (illustrated in Season 1 Episode 2 when Shaun takes Dr. Melendez’s sarcastic remark “Nice call, genius” as a compliment); the difficulty with responding to other individuals’ inquiries and then a tendency to spontaneously state one’s thoughts (reflected in Claire’s conversations with Shaun in which he sometimes does not answer her questions but then speaks his mind when no questions are being asked); and the challenge of empathizing with other individuals in a position of vulnerability. This latter characteristic in particular is something which significantly affects Shaun’s ability to emotionally connect with patients, as he fails to express adequate sympathy for a young boy with terminal cancer despite making an attempt to do so by reading a passage from Harper Lee’s To Kill a Mockingbird about stepping into someone else’s shoes.
While “The Good Doctor” does a superb job of portraying the challenges associated with autism, one significant shortcoming that many people in the autistic community would take issue with is the miniseries’ depiction of a savant protagonist as a representative figure for autism in general. While one episode features Shaun working with an autistic patient who is differently functioning than him (with the result that he is better able to connect with Shaun during treatment), the overall emphasis on the protagonist’s talents and challenges as characteristic of autism poses representational issues since Autism Spectrum Disorder’s range varies on an individual basis. The miniseries’ failure to launch into a broader depiction of autism’s varying degrees carries the potential for conveying a misleading representation to viewers who are unfamiliar with the diverse range of autistic behaviors, with the effect of further perpetuating stereotypes of the archetypal autistic individual as an intellectual savant, which does not hold true for all people on the spectrum.
As a person on the autism spectrum, I found it particularly interesting to see the miniseries’ depiction of Shaun’s effort to navigate the world of potential romance with Leah, a neurotypical individual who turns out to be his neighbor. My mother, who is neurotypical, observed upon watching the miniseries that Leah clearly had a romantic interest in Shaun, evidenced by frequently telling him that he was cute, knocking on his door, offering to teach him to drive, and reassuring him of the importance of not perseverating over issues that he feels embarrassed about. Given the fact that Shaun has Asperger’s Syndrome, he does not possess the emotional literacy whereby he can appropriate intuit, through social cues, the actual feelings of this young woman. This is a struggle I myself have in trying to discern and comprehend whether someone of the opposite sex has an interest in me that is simply curious, casual or romantic. My hope for the character (and myself as well) is that with maturation, a larger emotional vocabulary will evolve whereby social cues will eventually be more readily understood.
Overall, “The Good Doctor” is most definitely a miniseries that everyone on the autism spectrum should take time to watch. While they may take issue with the representational problems of casting a neurotypical actor in the lead role and of featuring a “high-functioning” protagonist as a poster boy for autism in general, the truth is that understanding any human being’s intentions and behavior is a multifactorial and highly complex process, one which is foreseeably much more difficult for those with diagnoses on the autism spectrum. By sensitively portraying the challenges that autistic individuals struggle with, “The Good Doctor” serves an educational purpose in raising autism awareness and conveying the reality that all of us struggle with interpreting the behaviors and intentions of others, irrespective of whether we are or are not on the spectrum. I’m getting ready to watch tonight’s episode of “The Good Doctor: Season 2” and am so impressed by how much courage it takes to be a person with significant challenges and to persevere in the face of them.
“I am an artist on the autism spectrum, specializing in Civil War/Reconstruction history as a second-year graduate student at the University of North Carolina, Greensboro, and I have been drawing hundreds of Civil War-themed pictures since the age of five and a half. As a person with Asperger’s Syndrome, I have a very focused set of interests, and the Civil War is my favorite historical event within that range of interests. It is therefore my fervent desire to become a Civil War historian and have my Civil War artwork published in an art book for children.
I am also very involved in the autism community and currently serve as the President/Head Officer of Spectrum at UNCG, an organization I founded for students on the autism spectrum. The goal of the organization is to promote autism awareness and foster an inclusive community for autistic students on the UNCG campus. The group has attracted some local publicity and is steadily gaining new members, and we shall be hosting autism panels for classes on campus in the near future.
I have also been pursuing a side career as a freelance journalist, and I have had at least 8 articles published in local magazines and newspapers from various cities and towns in North Carolina and in Pittverse Magazine (based in Pittsburgh, Pennsylvania), which is staffed entirely by people on the autism spectrum. I am very keen on contributing articles as a regular blogger for the Art of Autism. Among my ideas for article topics are my experiences with disclosing my diagnosis in the workplace; and local businesses which are staffed by people on the spectrum and which donate their proceeds to autism causes. Through these blogs I hope to highlight the issues of autism’s portrayal in film, the challenges of discrimination that autistic individuals encounter in the workplace, and to promote support for local organizations that are dedicated to autism causes.”
You have many diagnoses besides Aspergers. Can you tell me how old you were diagnosed and how the other diagnoses came to be?
I have a diagnosis of: Asperger’s Syndrome, ADHD, OCD and Dyslexia. I was 27 being diagnosed with AS, but I was 15 diagnosed with Dyslexia. My girlfriends mother is a mental health nurse and asked if I was on the spectrum and that lead to my official diagnosis.
When did you start making videos about Aspergers?
I first uploaded my first video in 2013 but didn’t do anything and was not active on YouTube properly until 2015.
How many videos have you made?
To date I have made about 118 videos on the subject for helping and educating.
What is the purpose of the videos?
The videos I make are to educate and raise awareness of Aspergers / Autism in a fun upbeat way.
What is the main thing you want to share about Aspergers?
That we can all use Asperger’s as a super power if we focus :).
Can you share anything else about your personal journey?
I focus my creative brain engagement to create videos and content for the internet and the fact I have ASD helps me focus on the creative part and that is just the best feeling to have a positive out of something that is sometimes seen as a negative.
Daniel M. Jones is an international best selling author, multi musician and video influencer with an award winning YouTube channel dedicated to Autism awareness and understanding. As a person with Autism himself with a diagnosis of Aspergers Syndrome, OCD, ADHD and Dyslexia Daniel uses is influence to help educate people about Autism using his skills of video and social media influence.
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