Father and son at son's graduation

Helping My Son on the Autism Spectrum Share His Stories With the World

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My son, Colin, blows me away every day. He is 28 years old and was diagnosed with Asperger’s at a young age, when the relatively unknown Asperger’s was still in a cul de sac of uncertainty. Now, Asperger’s is more well-known.

We spent Colin’s early years wondering, searching, trying to understand what it meant and what to do. I no longer think about that. I focus now on what I can do to share his creative genius with the world.

Colin is a storyteller — a really good one. He conjures up entire worlds, vivid mental images, clever plots and complex characters in remarkable detail, sometimes developing storylines, chapters, book sequels over long periods of years. Colin is a talented writer whose words dance off the page, but for the most part, his stories are in his head, and they stay there with remarkable recall.

There was a moment when it became crystal clear to me just how remarkable his brain was. It was middle school spring break on a father-son trip to the Grand Canyon. Driving across the Arizona desert, I probed Colin on his then multi-chapter novel work in progress, “Dimension Wars.” He told me there were 20 (or so) chapters, so I asked him to tell me in random order what was in each chapter. I’d ask about Chapter 3 and he would describe it. I’d then ask about Chapter 11 and he’d describe it. And so it went for a good long while. Immediate recall; no hesitation. And he’s still working on the story, never having written it down but still knows the whole story — chapter and verse.

And this is only one of the many stories he’s creating at the same time. At one point we created a list of 38 stories Colin had in his head — some short and others multi-chapter tomes.

Fast forward past high school diploma, past college diploma and the stories kept coming. And just a few months ago, he told me about the group role-playing game he leads. He plays 500 characters while the others in the game play one or two. He can tell you about each of the 500 characters without referring to notes.

The main challenge I faced as a parent of an adult on the autism spectrum was how to help direct Colin’s remarkable talents and passions. In his case, that meant him getting his stories on to paper (AKA the computer).

That’s what we did. We hired a writing coach, helped Colin create a website (www.fishandcherries.com) for his stories, movie and book reviews, flash fiction and random musings, and created a daily writing schedule. He wrote and he wrote a lot.

His head is still far too fast for his fingers — his stories are building up in his head faster than he can get them down. Staying focused can be a challenge for him, and he has faced the typical ups and downs of all writers. He is torn between wanting to work on his epic novels, movie reviews, comic books, and articles about topics that can make a difference in the world. There just never seems enough time.

I play the role of the coach, organizer and teacher. But he does the hard work of writing and creating new ideas. We work every day learning techniques about how to keep organized, focused and more productive. It’s a joy to watch. He is regularly writing for other websites — comic and book reviews for Fanbase, articles about autistic people in the Art of Autism and occasional articles for other culture-focused sites.

Last month, Colin published his first children’s book, “The Fire Truck Who Got Lost.” He wrote the text and recruited his talented friend Amber to do the illustrations. With the funds he raised in a crowdfunding campaign, we hired a graphic artist to create the book. It’s a charming story about a firetruck named Barnabus. You can find it on Amazon or on the Art of Autism Online Store.

Colin is energized by the recognition and is now playing a leading role in a new effort called the Autism Creatives Collective in the Bay Area, for creative people on the autism spectrum who want to share their talents with the world.

It’s just the beginning. Colin has a comic book in final writing stages, nine chapters of a novel already written, three volumes of a fan fiction series mapped out and a radio drama in development.

My job continues — supporting and encouraging but also playing the role of the agent looking for opportunities for Colin’s words and impacts to spread far and wide. It’s the best job I can think of, and there’s no joy greater than watching my son reach new heights every day. Watch out, world — Colin’s coming!

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To My Son on the Autism Spectrum Who Has Taught Me So Much

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Seven years ago, I welcomed you into my life. I had little knowledge of how much you would change it. I didn’t know how much you would teach me to be better — as a mother and a person.

I thought after four children I would know how to raise you, but you taught me we should never stop learning. You have taught me there is no “normal,” that different is not less, and that every heart beats its own rhythm.

The rare moments when I did not feel strong enough, when I could not seem to break an invisible boundary into your world — you taught me strength is not dependent on my physical abilities, but rather in my will to fight for someone I love.

The days I apologized for you — you taught me I do not need to apologize to others for you, but that I should have compassion for them. Because what does it matter what they think they know? You taught me to see they just do not understand.

The day my heart burst because I found a note under your pillow in your handwriting that said, “I am weird,” you smiled and said, “It’s OK, they don’t know my brain works different.” You taught me how much others lost if they didn’t accept and love you for who you are. It was their loss, and not ours. And so I learned to accept and love without limits even though I thought I had done that before.

Sometimes in my weak moments, when I believed I had failed you, those were the days you taught me I had not failed as a mother. Those were the days you let me embrace you when you cried; the days you would say, “I love you.”

The nights of restlessness, the times when all I could do was hold you so you would not hurt yourself — it was in those moments you taught me kindness, humility and patience.

And when I felt like a nag, because I wanted to educate and help others understand. When I felt I was pushy, overbearing, and being an overprotective mom — those were the times you came home from school happy. And you taught me it was courage and persistence and a battle I could fight.

But when I look back through the years, I realize above it all, you have taught me what unconditional love is. I have spent more silent moments with you than any other child of mine, looking into your eyes for some type of clue about your thoughts. But what you have taught me is I’m already there. I am enough. And you have taught me that in all my failures, or what I have viewed as failures, I have not failed at all. I have simply grown.

It’s not always easy. The days are sometimes long. Our family is a band of eight all learning from each other at different speeds. I have accepted that not everyone will understand what our life actually is behind these walls. I have accepted that as long as we stay together, we can provide you with what you need to thrive.

I have accepted that people may judge me, but I am doing the best I can and so it doesn’t matter. I have accepted that love will break boundaries, no matter how large or small. I have learned to accept everyone how they are.

I have accepted, I have grown, and I love deeply — and you have taught me that.

Follow this journey here.

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The Advice I'd Never Heard About Supporting a Child on the Autism Spectrum

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My son Jack gets on kicks. Remember those Magna Doodle drawing boards? We had several minis (understatement!), because we couldn’t leave the house without one for what amounted to a large percentage of my son’s young life. One of the many reasons? Jack would use them as signs — he loves signs. He’d pretend that a walk we were on was a train ride, and he’d write each stop on the board. We’d pause along our way whenever we “pulled into the station.”

broadway farm grocery storefront

One of the sweetest (says his unbiased mom) was his cash register kick when he was about 6. He had calculators with rolls of paper that print out the calculations that are punched in, and they were his “cash registers.” Everyone who works at our corner grocer has known Jack his whole life, and they were charmed by his sincere desire to help out. “Jack’s going to help me ring up customers,” one would declare when they saw us enter. “Oh, no — he helped you last time. I need his help today,” another would say. And Jack would beam. He’d take his station alongside one of the cashiers, who would call out the prices to him as he or she was doing the actual ringing up of a customer’s items, and Jack would happily plug in the numbers and crow out the final tally. The cashier would quietly adjust that to account for tax and complete the transaction with the customer, and on they’d go to the next.

The other sweetest? Label makers, when Jack was 7 and 8. He’d print labels for people in the building and the neighborhood that were mini “gifts” to them, and he would beam when the recipient “got it” that he or she had just been gifted something precious.

Every year, he trick-or-treats with his dad, always in a very singular costume of his devising, and goes into stores in the neighborhood. “What are you this year, Jack?” or “Wow, Jack, that’s amazing,” are the common refrains. And we live in a building with a doorman now, where Jack sometimes likes to sit in the lobby with his LED sign reading “Welcome to Our Building.” The sign scrolls. It has three colors. It’s truly awesome. In case you hadn’t guessed by now, Jack is on the autism spectrum.

Don’t get me wrong — Jack is actually quite shy. He hates being in the spotlight with every fiber of his being. But as I hope you’ve gleaned by now, he seems to enjoy connecting and forging relationships with people as much if not more than anyone you’ll ever meet, and that tends to win out over his shyness — so long as he can engage in his own way.

There’s nothing shy about me, though, and I wind up getting asked a lot to speak with moms of children newly diagnosed as being on the autism spectrum. I recently spoke by phone with one such mom who said, “My 8-year-old son does a lot of things people find annoying, and they get irritated. I just don’t know what to do. He doesn’t mean any harm.”

I hear her loud and clear. Same here. Jack’s challenges aren’t always visible to the naked eye, and it can be easy for a stranger on the street to misinterpret them. As he gets older and wants to go places on his own, I worry that he’ll bump into someone and be scolded, or worse.

I had two answers for the mom on the phone. The first was obvious: As her boy gets older, teach him to advocate for himself. “I’m sorry — I wasn’t ignoring you. I have trouble with auditory processing and didn’t know you were talking to me. Can you please repeat that?”

But equally important, I believe, was my second answer, and it’s not one I’ve heard or read anywhere, which is why I’m writing about it now: This mom and her child’s dad need to get out there and actively build their son’s “village.”

A dear friend of mine lives in an actual village — a small seaside town, where nearly everyone knows her son, who is also on the autism spectrum. They’ve known him since he was born, so they really know him. In their minds, he’s one of theirs, and so they all adore him and look out for him. I don’t live in a small town, but my neighborhood in my big city is akin to one, and Jack’s dad and I made sure from the get-go that Jack’s neighbors knew him — really knew him — so that they, too, could truly “get,” appreciate and care about him.

Communities often rally around those they perceive as their own. I urged this mom of the 8-year-old to get him out there in ways he could tolerate and see to it he becomes familiar to those around him. And to fill them in about his diagnosis — engage their empathy, which can override their prior irritation. He’s a wonderful boy with many attributes, strengths and challenges. Let them see the full picture. I urged the mom to turn the people in her area from strangers into her son’s community, so that they, too, can see what she sees when she looks at and smiles on him. Yes, incidents with strangers will be unavoidable. But there could be far fewer strangers and far more people looking out for him as he grows older, far more people cheering him on. Far more people sincere when they say their version of our corner cashiers’ “No, you had Jack with you last time — I get him with me today!”

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When I Couldn't Fully Prevent a Holiday Meltdown

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This year, for the Thanksgiving holiday, I did everything in my power to stick to my routine. I knew it would be important for me as someone on the autism spectrum. I still had my college class the day before, and then I requested to work on the holiday itself. Then, I had a meal with my family. To keep myself a bit busy, I decided to plan some shopping for Black Friday with a friend. For the most part, things ended up going pretty smoothly.

Two days after Thanksgiving, I was sitting in front of my computer and suddenly felt this extreme restlessness and anxiety. I couldn’t figure out what was going on, and I attributed it to the fact that maybe I was just upset over something I had lost a few weeks ago. Maybe it was just frustration from my school assignment. But the feelings escalated.

I ended up having a complete meltdown. So I messaged a friend of mine and started to vent. I was so upset and couldn’t calm myself down. At one point I asked, “Where did this meltdown come from? It seems so out of the blue!”

My friend stopped me by saying, “You’re coming off of a holiday.”

I believe she was right. My meltdown likely had nothing to do with the item I had lost or the school assignment I was working on. I believe it was simply because — although I had stuck to routine as much as possible — there was still a holiday. And my brain just wasn’t able to process it. I compared it to feeling dizzy and knowing the ground is not moving, but your brain just feels like it is.

The moment my friend mentioned this, my meltdown stopped. I understood. And I could think clearly again.

I realized no matter how much I prepare for the holidays as someone on the autism spectrum, sometimes there may be no way I can fully prevent a holiday meltdown. But that’s OK. It’s nobody’s fault. It’s just that my brain processes things a little differently.

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What I'm Thankful for as the Parent of a Child on the Autism Spectrum

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Social media in November is often filled with daily posts on thankfulness. This year, however, the posts have seemed to have a much different feel, with little thanks or grace. So here are a few things I am thankful for: two happy, healthy daughters; a husband who works hard so I can stay home during these early years; family and friends who love, support and accept us as we are; and my 3-year-old’s autism spectrum disorder (ASD) diagnosis.

We recently received an ASD diagnosis for my daughter Nora. The diagnosis wasn’t a bombshell; it wasn’t devastating news. It was an answer. An answer to some questions, to some concerns. We have always known Nora is unique, that she has some quirks. And those quirks are some of our favorite things about her. We love her personality; we love her spirit. We don’t want to change anything about her. She is still the sweet, affectionate, hilarious and adventurous girl we have always known — diagnosis or no diagnosis. Only our perspective has changed.

We aren’t searching for a “cure” or a cause. Our intention is to get supports in place to help her develop and maintain meaningful and appropriate relationships, as well as improve her skills to be successful in school and the community. She has so many strengths and is so motivated; we do not doubt her potential. I am thankful for Nora. And if ASD is a part of Nora, I am thankful for that as well. Not only has the diagnosis given me a better understanding of my daughter and her needs, it has also given me a renewed thankfulness for our family and friends. Their response has overwhelmingly been one of acceptance, encouragement and love. So as we continue on into the land of referrals, wait lists, and paperwork, paperwork, paperwork — it is with a sense of relief and gratitude.

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Helping My Daughter Understand That We All Learn at Different Rates

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My daughter is 11 years old and has an autism diagnosis. She is an amazing kid, but her self-esteem can be low and she can also be self-critical. I have been working in conjunction with a clinical psychologist recently to help my daughter build confidence in her abilities. She regularly compares herself to other students in her class, which sometimes makes her feel like she isn’t achieving enough.

I continually work with the school, trying to reduce any additional stressors that affect her daily school life. That includes support with transition into school and reduced homework at home. I want my child to achieve, but not at the detriment of her well-being. When it became evident my daughter was putting this added pressure on herself, I had to find a way to help her reduce it.

It has been highlighted that working with a child’s interest to understand social situations or learn in the classroom works well. My daughter has varied interests, one of which is swimming. It is an activity she does every other week with her dad and something she loves. But it is also something she has had to work at.

We have recently been working with a clinical psychologist and talking about how it is OK to ask for help in the classroom, as well as how we all learn and work at different rates. An analogy we have started to use with my daughter is to compare learning at school to learning to swim (something she enjoys), and it seems to help her understand.

We tell her we all learn to swim at different rates. Some of us enjoy swimming more than others, and this is OK. Everyone who learns to swim is probably more confident doing certain strokes over others. Some of us might prefer to swim breaststroke or front-crawl, while others might be more confident doing the backstroke. When we swim the length of a pool, we don’t all reach the end at the same time.

Swimming and learning are similar. Like swimming, people learn at different rates, and this is OK. Each person is more confident in different subjects. Some of us prefer to learn maths to English. Some people are better at physical education than learning in the classroom. We don’t all finish our work at the same time.

Using a comparison of something my daughter enjoys to understand a social situation seems to work for us. We have reinforced the learning by putting classroom rules on a keychain that include short statements like “I can ask for help more than once” and “It’s OK if I do not finish all of my work.”

What has been evident through helping my daughter is that she has a set of “rules” in her head, and sometimes the rules are too tough. She expects so much from herself that I have to balance this with reassurance she is doing enough, she is amazing and I am so proud of her.

My daughter may always be a little self-critical, and she may continue to put unnecessary pressure on herself to achieve alongside her peers. In turn, I may always have to be her reminder that we all learn at different rates, and this is OK. I hope with this continued support she will realize she is enough, exactly as she is.

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