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When Being on the Autism Spectrum Has Both Bright and Dark Moments

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Upon receiving my diagnosis of a lifelong disorder at 58 years old, I’ve had almost that many years of life experience to review. It is an ongoing recollection of past and present episodes and how they relate to my diagnosis. I was relieved at having an explanation of why my behavior is not in step with my companions. Knowing it had a name took away the long-held notion of being from another world.

On the bright side, I believe there is a strong connection between my strengths and talents with autism spectrum disorder (ASD). My passion for writing has taken off since my diagnosis because I know have a story to tell. This passion is one thing I have ASD to thank for. My tendency to hone in on details instead of the big picture was an asset to my once-held favorite job as a library cataloger. I fondly recall the one who taught me cataloging telling me, “You’re a natural.” Now I know she was right and why.

However, after weeks of celebration of being given this diagnosis, I am reflecting, too, on the dark side. It isn’t all positive for me.

An everyday challenge for me is verbal instruction. It is hard for me to take in and process when given little time to respond to a list of instructions. I now know why that is, but it doesn’t turn off my inner panic button. If I act on the instructions without questions or clarification, the odds of having heard it right are not in my favor. When I get it wrong, I feel a crushing blow, and it seemingly takes forever to get the memory of it to stop replaying in my mind.

Sensitivity to certain noises is annoying. I don’t mind hearing loud music provided it is my music that’s playing. I don’t know why someone’s stereo in the other room or next door can make me feel like a cat whose tail got caught on a chair leg.

A meltdown doesn’t walk in. It breaks in! It can come from out of nowhere. For me, it often breaks in at night. I wake up and feel trapped in my bed. The pillows and sheets are attacking my skin. I get up and throw the pillows across the room. I know what’s going on, but my knowing doesn’t stop it.

The reaction of those in my inner and outer circle has been mostly positive, but some responses were unsettling. Some respond with, “Well, most people probably have at least a little autism.” Maybe they were trying to make me feel better, but autism isn’t the common cold. I take my diagnosis as a life-changing event, whereas some seem to suggest it is a blip on my life’s screen. I also get the response, “But you look so normal.” Well, there are countless disorders that don’t have neon signs attached to them.

I realize if I go down the path of “what might life might look like now without ASD,” I am headed down a path with a depressing dead end. I tell myself no one has it all.

The positive is there are ways to tackle the dark side. When given a list of verbal instructions, I try to ask or repeat what I believe I heard the person say. When invaded by a meltdown, I try to sit somewhere, take deep breaths and rock… and say a little prayer too until the storm passes.

For me it is both bright and dark living on the autism spectrum. But that can be true as well for people not living on the spectrum. It is an old saying that is so true that one has to take the sour with the sweet. But oh, I am so thankful for the sweet.

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Want to support a good cause and buy delicious treats for your pup? Look no further than Finley’s Barkery, a Minnesota-based bakery which makes dog treats and is staffed by adults on the autism spectrum.

Finley’s Barkery, which opened less than a year ago in March 2016, is the brainchild of two special education teachers, Angie Gamades and Kyle Gallus, who founded the bakery as a way of providing meaningful employment for adults on the autism spectrum.

“As two special education teachers with many years of combined experience, we saw a need for meaningful work opportunities for adults with disabilities ages 21 and older,” Gamades told The Mighty. “Statistics show that 80 to 90 percent of adults with autism and other intellectual disabilities are unemployed or underemployed. We wanted to change that! We strived to provide a strength-based and meaningful work opportunity for our employees where they are able to learn and practice functional work skills in the community.”

The barkery currently employs six people on the spectrum. Gamades and Gallus work with each employee to find their strengths and assign roles based on that. Five employees work in the kitchen making treats and packaging them for sale, while another employee works from home, a more sensory-sensitive environment, labeling items.

Currently, Finley’s Barkery is fundraising for a “Bark Truck,” which would allow its employees to hand deliver treats and interact with customers (and their dogs!). Beyond delivering treats in person, Finley’s Barkery also ships treats out nationwide.

“They are such hard working, motivated and dedicated employees,” said Gamades, who recommends more companies hire adults with autism and other learning disabilities. “They are proud of their work and accomplishments and thrive when given an opportunity to grow and learn. They also have many strengths that often go untapped.”

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My Autism: A Day in My Life

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The alarm goes off right when it’s supposed to. I hit the snooze one time, then it’s time to get up. I complete my morning routine. It’s the easiest part of my day. Always the same, never changes. It gives me comfort. Take care of my dog, then take care of myself. Check the weather first, then get ready. Meds. Don’t forget those. Double-check my backpack. Check the stove, check the locks, check the lights, check them again. I know they’re just obsessive thoughts, but I have to satisfy them. Finally time to go. Right on time.

The sensory onslaught starts as soon as I walk out the door. On this day, the wind whips, the rain pounds, and the thunder roars. I head to the car where I sit for a minute and gather my focus before I put the car in reverse. The nerves have already shown up for the day and I haven’t even left the parking lot. It takes every ounce of focus to get to Chick-fil-A. It is Friday, which means I treat myself to breakfast out. I spit out my order at the drive-through. My phone’s already buzzing for work. By the time I get to the window, I’ve lost my words. I fumble for my debit card. She asks how I am. I can’t respond. She asks if everything is OK. I nod my head. Inside, I’m apologizing profusely. It’s not unusual for me to lose my words. They get scrambled in my head and I can’t get them out of my mouth. It never gets any easier to get out of the situation despite how often it occurs. I finish my drive to work replaying what just happened.

By the time I get to work, I have to shut the door to my office for a few minutes. I grab a chew toy out of my fidget box and spin in my chair. I could do that all day. Instead, I check my to-do list and update it using my blue pen. It’s the last of its kind and won’t last much longer. What will I write with when it runs out? It’s an anxious thought. I’m learning about those in therapy. What am I supposed to do next? Look for evidence that supports it, then look for evidence against it and come up with a new thought. It’s loud in the office. The lights and the computer buzz. I try to push the noises aside and find my focus. It’s hard today. I don’t know why. Did I do something wrong? Another anxious thought. What’s first on my list? I get started preparing for an upcoming opponent (I get paid to watch basketball for a living.)

I have a question but I really don’t want to talk to anyone. What if I mess it up? I have to ask, though. I prepare the conversation in my head: what will I say, what might they say in return, what’s my response. Oh yeah. Don’t forget to look up. I don’t have to look at his eyes, just pretend. Try to focus on something behind his face. It will make him think I’m looking at him, which I’m supposed to do but just can’t. I can’t look and listen at the same time. It hurts. No unexpected behaviors when I leave my office. That means no snapping, no flapping, no rocking. Just walk down the hall, follow the script then walk back. Say a quick prayer that no one stops me. If they do, just say, “Good morning.”

I grab a bouncy ball and head down the hall. I make it unscathed, though my heart rate would tell you otherwise. The door’s closed. Do I open it, knock, or turn around? Which one is right? Nothing comes easy. I elect to knock and he motions for me to come in… I think. “Good morning… I’m good. How are you?… I have a question…” Come on E. Spit it out. You can do it. I manage to ask my question. He responds with a multi-step answer. Shoot. I can never remember multiple steps. He keeps going. Focus E. First, then, after. He’s finished. “Thanks.” I repeat it to myself as I walk back towards my office. I cross my fingers that no one says anything or needs anything as I walk down the hall. It doesn’t work.

“Hey E. Can you come here?” Uh oh. Unexpected event. “What’s up?” I respond. That seems to be a standard response illustrating my desire to listen. I use it often in the office. I think it’s safe. I guess I’m not really sure. She just has a quick question. I can help. It feels good to help. She likes to use smelly lotion. I guess she likes it. I don’t. Focus E. Fix it and leave. “You’re welcome.” I continue down the hall. I make it back to my office after what seems like an eternity. My heart is racing. It will slow down eventually. How did that go? I made it. I got the information I needed, although I’m not sure I remember all of it. The conversations replay in my head. Did I do it right? Did I make them uncomfortable? Did I rock or did I stand still? I’ll never know.

I’m exhausted. It’s not even lunchtime. I grab my chew toy and get back to work. It’s going to be a long day.

Follow this journey on Erinmmckinney.com.

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Bryan, a man on the autism spectrum, shares what he wishes he’d said to his childhood teachers in a letter on his Facebook page, Asperger’s Syndrome Awareness: Bryan’s Advocacy.

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