The author's son, standing near grass outdoors

6 Things Being the Mom of an Autistic Child Has Taught Me

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Once upon a time, I began to realize my amazing first-born stood out more than I thought. I knew he was special, with his infectious affection and incredible jump-up-and-down-arm-flapping excitement. I knew he saw the world with passion; he reacted severely both in joy and displeasure. I knew his heart was full and his mind was active, yet as he continued to grow, the development of his abilities was unlike other children. He knew his alphabet and numbers by a few months after his 2nd birthday, but he couldn’t string two words together. He could put together a 24-piece puzzle, but he couldn’t hear “no” without reacting with force, frustration and anger.

After my father visited and gently advised that I check, I read and read and didn’t sleep for days. I knew my son is Autistic. I also knew it wasn’t a tragedy. I knew it meant more effort to teach some things, but it also meant gifts, lessons and joy I wouldn’t know otherwise. Still, the reality of parenting can be filled with uncertainty.

So I continued to learn all I could, both about autism and about my son’s uniqueness. Most of all, though, I had to learn how to balance apparent opposites in my parenting and, honestly, in all other aspects of my life. I had to learn how to balance conviction and flexibility, discipline and gentility, endurance and self-care.

I realize all of us must learn this — it’s called virtue. It’s those habits of the mind that improve us, our relationships and our communities. It’s that life-long effort to overcome our weakness and impulsiveness in favor of prudence and consistency. It’s the gift of responding properly to those things outside of ourselves. And, of course, this is an obligation and a gift to all people, but having a child on the spectrum moved me with particular force to strive for virtue. Autism taught me about patience and endurance. It taught about conviction and fortitude because nothing will move us to get our act together like our children will. Moreover, in learning how to help my son with his areas of difficulty, I learned a thing or two about human behavior in general. So, for all of us who sometimes feel discouraged, exhausted or hopeless, here is what neurodiversity can do. Here is what autism taught me about virtue:

1. It taught me that every behavior has a motive and an end. It is not without reason.

Not unlike Aristotle’s account of personhood, applied behavioral analysis tells us that every act seeks an end, we get something out of it, we seek some good. With my son, I learned to analyze why he might rock, arm flap or express frustration. Whether it was motivated by seeking attention, avoiding a task, being over-stimulated, etc. The same is true for all people — we do things for a reason, we are motivated to achieve some good, so we act, we do so repeatedly and we become habituated to have certain responses. Learning about it taught me that I had options for coping with stress, communicating my concerns and avoiding harmful situations.

 

2. It taught me to be patient.

Teaching my boy not to be afraid of the toilet took us several months of desensitization, as did bath time, haircuts and other fairly common activities. Sometimes things that are easy for other people take me longer, too. It’s part of the human condition not to be great at everything immediately. Some things take time. The greatest things take time and effort. This teaches us gratitude, humility and fortitude.

3. It taught me to exercise self-care.

As parents, we sometimes forget that we too need care. Planning, observing and being super consistent sometimes results in unshaven armpits, severe sleep deprivation, poor eating habits, etc. I stopped being important to myself in the midst of caring for my children and my home suffered. We can’t serve the most important people if there’s nothing left in us. Caring for ourselves can be an act of humility, in accepting that we have limitations. Caring for ourselves is an act of love, giving those we serve the best we have.

4. It taught me to speak with conviction and not to be afraid.

I used to be afraid of hurting people’s feelings or of making them feel uncomfortable. I still care about not hurting people, but I care much more about forming a positive and nurturing environment for my children. It’s OK for people to see the world differently than I do, but if this worldview involves doing things that hinder the progress of my children, their trust in me or the peace we need to move forward, I am no longer shy about speaking up. Moreover, it is my responsibility to protect my children from all harm, so now I not only speak but actively exclude those environments that cause regression and anxiety in my little family. My babies come first. Just as my son can choose to lose screen time with his behavior, so can those around me lose the privilege of my children’s company with their behavior.

5. It taught me to be a mother.

Honestly, I really sucked at being consistent, disciplined and bold. Having to be up and about 24/7, insistent about what my children need, and having to apply principles consistently moment by moment, day by day, actually made me a better mother. I probably would’ve just winged it otherwise just because I’m naturally that disorganized. But now I even plan meals, shower daily, shave my legs and try to budget. I even find time to write about it now and again.

6. It taught me about my own Asperger’s.

Through observation of my own little Einstein, I saw so many oddities I engaged in as a child. I saw myself in many of his self-regulatory and repetitive behaviors. I saw myself in his sensibility, hyper-focus, and yes, in his intellectual ability. As I read, I learned about the “gender gap” in Asperger’s and autism and why autism can “look” different in women (and why we are grossly under-diagnosed). I will write more about it next time, but I must say now, it saved my life to know the “why” to so many things I wondered at (and disliked) about myself.

There is really too much to write that being Christof’s mom has taught me, but this is a short list to shout to the world that autism is not a tragedy and that it can teach us so much about our humanity. More so, it can teach us so much about being better at our humanity.

Follow this journey on Letters From My Bouncy Castle.

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Photo by Jose H. Guardiola, Jr.

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Nathan McConnell Creates 'Growing Up Aspie,' a Comic About Life on the Autism Spectrum

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Nathan McConnell creates comics for people like him, and if you grew up on the autism spectrum, you might find his “Growing Up Aspie” illustrations relatable.

“I was diagnosed as a child with Asperger’s syndrome but due to lack of understanding, it was quickly forgotten,” McConnell told The Mighty. “So growing up, I went through years of extreme bullying, relationship issues with friends and others that often ended in catastrophic falling outs… This continued into adulthood and it wasn’t until my mother reminded me of my childhood diagnosis that I was finally able to look back on my experiences with that added filter and the years of frustration all just made sense.”

After getting a job as a Samsung representative, McConnell bought himself a Note 3 phone and began sketching. Through his sketches, McConnell got the idea for “Growing Up Aspie” and decided to tell his story in comic form.

While many illustrations in this series focus on McConnell’s experience, he also uses feedback from other people on the spectrum to inform his work. “Often times, I will read the autism message boards on Facebook for something that is a mutual experience to a lot of us or that desperately needs to be addressed for autistics who haven’t been through it yet,” he said of his work.

In the three years, he has created hundreds of drawings, which he recently compiled for his debut book “Growing Up Aspie: Year One.” “This book is a collection of my first year of comics and the deeper meanings originally posted with them,” McConnell said. “In this first year of comics, you follow me losing my last job, struggling to find a new one and finally fighting my way into a full-time position in my field after almost 10 years of trying and failing.”

Of his illustrations, McConnell has a few favorites, including “360 No Scope,” about how autistic people often see everything at once — something McConnell describes as “a blessing and a curse.” He is also fond of the very first comic he made, “Making Friends in Middle School,” which he wrote based on a memory from his teenage years when he says he realized he wasn’t quite like other kids.

The response to his work, McConnell said, has been amazing. “I’ve had girlfriends, boyfriends, husbands, wives, moms and dads all write me thanking me for helping them understand the autistic person in their life,” he said. “I’ve also had autistic men, women, and children write me crying and thanking me for letting them know that they are not the only ones who have experienced what they have.”

While McConnell hopes his illustrations will help bridge the gap between neurotypical people and autistic people, one thing he wants the former to do is listen. “Listen to what we are trying to say and not what you think we are saying,” he said. “Many of us have had so many people listen to half a sentence and feel like they had our full meaning figured out. It’s a recipe for invalidation and misunderstandings.”

For more of McConnell’s work, visit the “Growing Up Aspie” Facebook page.

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Spending Most of My Time Alone as an Autistic Person Doesn’t Mean I’m Antisocial

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I was diagnosed with autism in my early adulthood by specialists in the field. And then I participated in a series of experiments that my local university was running that led to my diagnosis being confirmed. I have autism. No matter how outgoing I sometimes appear on the outside, I have some very well-hidden coping mechanisms related to my autism.

I’m an adult now, and I’ve finished school. I learned something while I was in school. I learned that most conventional university experiences are full of noise, full of people and full of a crowd of young people who seem to me to move as one in their perhaps instinctual understanding of what a party is, or what a get-together is. I would be perfectly content if it was acceptable to sit at the edge of a party or just outside it, far enough from the noise, and be part of it by solitarily enjoying the proximity. I love to listen. So many autistic people I talk to want to be part of it, but just because we enjoy the fringes doesn’t mean we’re not enjoying it at all. I enjoy the fringes the most.

Now that I’m not required to sit in rooms with hundreds of people talking — listening to things my auditory processing issues can’t make sense of because the words can’t compete if the air conditioning is too loud, or someone is eating potato chips two seats down — I’ve found that I relate to the world in a different way.

I spend almost all of my time alone. Someone might assume I’m sick or maybe depressed. And I do have bipolar disorder as a comorbid diagnosis, which adds a new flavor to this, but frankly, I just like to be alone. For me, in these years since graduating school where I’m no longer required to be part of a crowd constantly, I’ve learned I am much healthier when it’s just me. I can keep my emotions regulated. I can recover from a meltdown — not only that, there are fewer meltdowns because I’m dealing with less at a time. This does not equal antisocial.

I’d also like to break down the stereotype that autistics can’t be charming. People like me who have spent a life writing scripts and watching how those scripts impact the people I say them to have developed quite a social lexicon — but it uses a fuel we don’t have, and the more we have to do it, the closer we can get to burning out.

When I was a kid, the way I’m living now would have seemed like a catastrophe to me. I wanted to be conventionally beautiful, be absolute “normal.” Not this balding 33-year-old semi-dude (nonbinary, but that’s another blog post) who spends at least 85 percent of his time alone. I used to dream of the day I would like going out dancing, going to parties, hanging out in large groups. The older I got, the less I wanted that. The older I get, the more content I am with myself.

I’m not someone who avoids social interaction at all cost. Theatre has always been my deepest interest, right from childhood when I couldn’t talk to people and it caused me so much stress and anguish that my dad started writing me scripts. They worked so well that I started writing my own scripts. I have this whole script system laid out in my head like a library of flowcharts. All the easier stuff, like pleasantries, are there. Conversations with cashiers about the weather or what holiday is coming up are there. And then there are the specific situations like an outing with a friend or a volunteer job. Those take time to create and are more involved. There are more variables and I write scripts for every variable I can think of. Once I’ve got scripts, I play the interaction in my head. Visually. This comes from theatre training too. How close will I stand? What will my hands do? What door will we enter? Walking, or standing still? What are the escape exits just in case? If I’m lucky enough to have been there before to have a visual picture of the place in my mind, it’s like playing Barbies in my imagination.

At the same time, no one is aware that I use so much mammoth preparation for something as small as a coffee chat. So when I get tired easily, or upset, or I need to step outside and collect myself before continuing, I’m always afraid they will smell the different on me. It’s reaching that point where pretending for so long has eaten away every last bit of fuel I’ve been putting into performing.

I fly under the radar easily. I have learned to socialize well, and as part of that I’ve developed an attitude of “I don’t care what they think,” which leads to genuine reactions on my part. Usually only people who know autism can see it in me at first glance. But just because I can mask the problems I have for short times doesn’t mean they’ve disappeared.

I’m going to write a part two about what I’ve learned about working and living as an autistic adult as safely as possible, as openly as possible. Because experiencing burnouts can change my life drastically.

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Thinkstock photo by jokerpro

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Why It's Hard for Me to Say 'I Am Autistic'

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As an Autistic individual, I find it hard to tell people I am Autistic. Most of the time, I keep it a secret because some people are not very supportive when I reveal I am Autistic. In my last singing concert, I revealed to the audience I am Autistic. It was really hard for me. I was afraid I would be judged or shunned. To my surprise, people complimented me on my song, and I felt less anxious.

In my experience, telling someone I am Autistic can have both risks and benefits. If I tell someone I am Autistic, they might criticize or misinterpret me. They might not understand that loud noises are hard to deal with and that certain foods taste really bad in my mouth. But there can also be benefits, such as people being more aware of why I do certain things like cover my ears, eat certain foods, stim, etc. It’s also hard for me to say I am Autistic because of stereotyping and labels: “Oh, but I know an Autistic person and he never does that, you must not be Autistic.” Every Autistic person is different; each of us is unique and has challenges in our own way. We each have our own talents and special interests. In public, if I cover my ears, I worry, Will people stare at me? Will I be judged?

 

During sensory overload, I try to look OK, but on the inside, I am screaming. If there is loud noise and I cannot cover my ears, I will wince and have an upset facial expression. I cannot help it, it’s part of me being Autistic. I also sometimes will jump if startled, and this is also a part of me being Autistic. So if I say to someone, “I am Autistic,” I am being really brave. It is not something I reveal often, and it is hard for me to try to explain what it is like.

This is why it is hard for me to say “I am Autistic,” because the world can sometimes not be understanding of Autistic people.

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I Am a Strong, Autistic Woman. My Feelings Are Valid.

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Is there something about being autistic (Aspie, as I identify) that tells certain people I don’t have solid feelings or thoughts of my own? It sure seems that way. I would like them to know it is quite the opposite. While I might seem more child-like at times, it does not mean I am a child who needs someone else to dictate my thoughts or emotions. And I certainly do not need my own feelings invalidated. No one does. It is, in fact, a very dangerous thing to do. Especially to young children!

Where does this idea come from, I wonder? Our differences as autistics do not make us “wrong.” No, they don’t; they mean we are in the minority, which is not wrong.

I would like more people, in general, to be aware of the fact that autism is a “different operating system” and not a defective one. It is not a disease. I have no business telling someone else how to form their morals and values, and I do not need them to tell me how to form mine. They are formed, and it is my business. I am a strong, autistic woman.

The next time anyone thinks it is their business to tell an autistic person how they should think or feel (or anyone, for that matter), think again. Is it your business? Why is it your business? Might you have something to learn from the person you are trying to change? Think about it.

 

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Dad With Autism Creates Autcraft, a Safe Minecraft Server for Those on the Spectrum

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With over 8,200 members, Autcraft lets children and adults on the autism spectrum play Minecraft in a judgment- and troll-free space.

Read the full version of Dad With Autism Creates Autcraft, a Safe Minecraft Server for Those on the Spectrum.

Read the full transcript:

Autcraft Is a Safe Minecraft Server for Those on the Spectrum

In 2013, Stuart Duncan, a dad with autism, founded Autcraft.

Autcraft lets children and adults on the autism spectrum play Minecraft in a judgment- and troll-free space.

Today, Autcraft has more than 8,200 members.

Duncan noticed parents of children on the spectrum were looking for safe spaces where their children could play the game.

“Their children were being bullied on public servers because they behaved a little differently and were easily angered.” -Duncan, username AutismFather.

Users must submit an application to join and are required to follow a set of community rules.

“I feel very successful in what i’ve accomplished because i’ve seen children go from being shy and quiet to making friends…”

“And then off to making friends in the real world and finally to getting their first job.”

“The players are the community. It’s not just me or any other single person.”

“It’s everyone, and we’ve all grown to support and encourage and even celebrate each other.”

Duncan says he’d never leave the community behind and hopes to add more game types and servers.

“What I’d hope is simply to inspire other people to do as much as I have or more.”

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