Surviving & Thriving With Asperger's

"Asperger's is a neurological condition that causes a person to become overwhelmed by their sensations, be unable to connect socially with their peers, and start to withdraw into a world of their own creation..."

"The biggest problem we see is that most of the parents, teachers, therapists, and people on the spectrum tend to focus on the executive function and the social skills issues, while completely ignoring the sensory and emotional components (which are the better place to start)"

"Defense Mode affected me on more than just a fear level. It affected me biologically, psychologically, emotionally, and prevented me from having a full life. As someone with Asperger's, you can try to do life all you want, but you're never going to flourish and thrive until you are out of Defense Mode."

"Growing up, I spent the majority of my free time playing video games. It was my social life. It was how I learned about the world. It was how I explored different sides of my personality and how I satisfied my curiosity.

When I wasn’t allowed to play video games, I was reading books about video games, designing video games in my head, and talking about video games. It seemed to others that I was addicted because that was all I would focus on."

"Growing up, I was an extremely picky eater. The list of things I ate was incredibly small: peanut butter and jelly sandwiches every single day at school, and rice, beans, grilled chicken, mac and cheese, and chicken tenders at home. That’s the entire list. I didn’t even eat pizza until I was twelve.

Today, I'm not a picky eater at all. I eat all sorts of foods. My friends say that I do Mexican food as a hobby, because I make my own tacos from scratch (including the tortillas). In fact, a little while ago, I made a giant feast for everybody for my birthday, which included a three-course dinner.

It is with great relief (and a ton of work) that I am now willing to try new, interesting foods and be OK with traveling and eating whatever is prepared (within reason).

How did I make the leap from A to B? It’s a rather simple three-part process..."

"I didn't trust in my body's ability to handle the taste, or the corresponding panic that came after that. I needed to feel in control, and I didn't get that feeling when eating new foods."

"We’ve all heard the lectures on why hygiene is important (and can probably recite them verbatim by now . . . thanks Mom!), but until I discovered a few things I'm about to share with you, hygiene was a constant struggle (and sometimes a source of shame) for me.

Here’s what finally helped me do what I know I needed to do, without it being sensory hell..."

"I remember that when I was diagnosed with Asperger's at age twelve, I went up to a few teachers and basically told them either, "You're fat" or "You suck at teaching." I wasn't doing this to be mean. In fact, I thought I was being helpful. I was just so deep in Defense Mode that I was unaware of the impact of my actions."

"I was in a constant state of fear and shut down, withdrawing further and further away from the world. I got depressed, I got anxious, and it made it hard to accomplish basic functions in the world. When I was deep in Defense Mode, it literally shut down the parts of me that I needed to function in everyday life. Things like focusing, executive function, digestion, social skills, etc. So I felt like I was broken. Then on top of that, I started to question what that meant for me as a person. Am I a good person? Do I have worth?"

"Over time, the ratio of in/out of Defense Mode changes. I'd say that I am out of Defense Mode 80 percent of the time these days. That doesn't concern me at all because I know that when I go back into Defense Mode, it’s just an indicator that I am really stressed and need to take a break. When I take that break and take time to relax, calm down, and soothe myself, I get out again and can continue on with my life."

"Every night in my apartment in Seattle, as the sun would set, a massive amount of panic would set in, and I didn't know how to handle it. Everything I did seemed to make it worse.

I remember being out on my boat with some friends, with everything seeming OK externally, but internally I was freaking out and barely holding it together. It was really bad.

A few months later a group of us went to go see How to Train Your Dragon 2 in theaters, and about three-quarters of the way through the movie, I was wrestling with my own anxiety internally like I always did . . . and then something changed."

"So here’s my life now. I'm relaxed. I enjoy life. I have a thriving friend group, and life is good. Now, there's still the occasional panic attack, but the difference is that it no longer affects me at all."

"I thought I was going to literally die. Now rationally, that's utterly absurd, but that's the level of panic attack that I was experiencing. It was clouding my vision and my judgment so much that one time when I was on a plane, I thought I was going to fall through the airplane: as if the laws of physics were going to stop applying, and I was going to fall through the seat fabric, through the underbody of the plane, and out. And that's completely not how physics work. But that's the level of panic attack and irrational fear that I had."

"Starting in middle school, about when I was diagnosed with Asperger's, I started to get really stressed out once I got home from school. It became a problem for my parents to get me to do homework while at the same time honoring my need to unwind and have that decompression time.

What they ended up doing (and what has worked really well ever since) was following this after-school/work schedule that we created through trial and error. Here it is..."

"My parents used to come up to me and say, “Clean your room!” so I did, and then when I told my parents I had cleaned my room, they would go in and check and get mad because I hadn't cleaned my room when I said I had. Obviously, this led to immense frustration because I HAD cleaned my room and they were telling me I hadn’t."

"Can you imagine how it would be if when you had a problem or a lack of information, you couldn't just make up stories and have a best guess? We wouldn't be able to function. Stories are essential to our lives and they drive our everyday functions, everything from the alarm beeping indicating it's time to get up, to the green light signaling it's time to go, to my stomach gurgling that it’s time to be hungry.

The problem is we often don't have enough data to really derive a true meaning or story, so we need to make a guess. Sometimes, those guesses can end up generating more problems."

"I didn't believe that it could work for me. I believed that, sure, the concept worked, but it didn’t apply to me. But I wanted to believe them. I wanted to believe that it was possible for me to achieve my dreams. I wanted to believe that it was possible for me to do what I wanted to do. So here's what I did..."

"In other words, don't bite off more than you can chew. I see a lot of people with Asperger's declare that they want to become independent, and then try to do everything at all once immediately and crash and burn.

I fell victim to this. I declared that I wanted to make a million dollars in one month and have everything good happen in my life immediately. . . . when I should have started with 'get a job.'"