To the Uncommonly Kind Strangers Who Helped Me Become an Autism Advocate
I was diagnosed with autism as a college senior. Until that point, I knew the world and I were often incompatible, but I had little insight about myself. I had a lot of frustration and no understanding as to why so many things ended in a fallout.
When I met Leigh during band camp, she recognized a girl who needed a friend. She also immediately saw that I didn’t seem to fit in. I was extremely sensitive to sounds and other things going on around me, and I just didn’t quite mesh in groups. A few weeks into our friendship, she mentioned autism, and as an education major (with a stereotypical autistic memory!), I was familiar with the diagnostic criteria. Yet, I wasn’t familiar enough with myself to see those traits in me. A few months later, I was evaluated and diagnosed.
There are seemingly endless reasons why my family and I wish I’d been diagnosed much earlier. The one positive thing about my late diagnosis was that Leigh was the one to pick up on it and start me off on the right foot — or, well, ideology. Right away, as a psychology major who had no background in autism, Leigh was absolutely sure there was nothing wrong with me, that I had a right to live and interact and enjoy things in my own way. She believed the solution to my mismatch with society was not to force my square-peg self into round holes. Instead, she helped me make a square hole drill (she did most of the work), and we set out to start making a place for me.
Now that I look back, it blows my mind that she got to that place completely on her own, and it wasn’t so much “getting there” as it was intuition for her. The story thus far is in itself a story about a stranger who did something kind. You know, um, changing the course of my entire life, bringing me directly to my passion and purpose in this world and sticking by a super-quirky girl who, at that time, did a lot of melting and shutting down and then spending the night on her love seat in the dorm room. I was lonely in my single room. It had never been a choice; I didn’t have a friend to room with at the time.
But that’s not the story I set out to tell (though it’s a story worth shouting from the rooftops, don’t you think?). Leigh and I set out with the square-hole drill, and it wasn’t long before we realized every person deserves to fit in to the world around us. No more yours than mine nor his than hers. We did an autism awareness campaign on our small campus. We hand-made ribbons, hot glued them to pins and attached them to sheets of paper with a message about autism. We made about a thousand, which was nearly half our student body, and we stuck them into random mailboxes.
In June of 2009, six months post-diagnosis, I started a blog at Autistic Speaks, which is still active. I was gaining a foothold in advocacy efforts until my health took a severe downturn in January of 2012. I had no idea what was ahead of me. At this point, I have a diagnosis of mitochondrial disease; I have a feeding tube, central line in my chest that goes to my heart, an ostomy since my colon was removed and an insulin pump. I spent 15 months in a nursing home, and though I’m on my own again, I never know what a day will bring. I might sleep for 24 hours, or I might wake up with a migraine that hangs around for six weeks, or I might suddenly be septic and have to call 911. All real-life examples.
As things got harder with my health, I completely pulled back from advocacy. That was the wrong thing to do. It made my world too small. It made it all about me, and my focus became my pain. I still do focus on the medical stuff, but it’s been a lifelong special interest, for Pete’s sake, and understanding what my body is doing (as best as medical science can possibly understand my body) calms my fears. That’s one of those square holes — it works for me, and that’s all that matters.
A long-time reader of my blog, Chloe Rothschild, reached out to me in the summer of 2012. She had an awful experience at the hands of people she should have been able to trust, people who said they understood autism. She emailed me a few weeks after that, which was incredibly brave. She was scared, but even then, she knew the way to get un-scared was to take that experience and make something good of it. She wanted to advocate so other people never have to be so misunderstood. Chloe worked hard, as she still does today, and by the summer of 2013, she had the chance to speak at a national conference which happened to be in my city. Still in mopey mode, I dragged myself down there, only because I absolutely had to meet one of my best friends for the first time. Maybe it was all a sneaky ploy, but in the one day I spent there, I got hooked on the idea of speaking like that. But mostly, I saw the community of advocates and the friendship within their group as well as the power they had to change things on a large scale.
I have my feet firmly planted in the advocacy world again, writing, speaking and even working at an autism nonprofit in the community which has become my second family. I’m so proud of the work I do there, designing the website and emails, but most of all I love to talk with the families, helping the parents see how incredible their kids are and making sure they kids don’t forget it. I absolutely love conferences, big ones like the one where Chloe and I met, but my declining health means that airplanes are out of the question, as are long car rides. The one event that is reasonable for me to attend, OCALICON, takes place each November in Columbus, Ohio. It’s a chance to speak at the highest level, a chance to make professional connections and a chance to reunite with my community of autistic advocates.
It turns out that living in a nursing home and receiving all of $28 a month makes it hard to afford even a four-day trip just three hours away. In the spring, I added up the costs and realized it would never happen. I realized I would need help if it were going to happen. I went back and forth dozens of times on taking the advice of friends and setting up a fundraiser. Conferences are not exactly necessary to sustain life, and I’m always mindful of people in much more critical situations. I ultimately set it up, thinking that family and close friends may donate a few dollars here and there. Every bit would help.
I got a few donations of that sort fairly quickly and felt such gratitude, excitedly thanking the donors. As I wrote to them, I realized that even though I was in a nursing home, I did a lot of work every single day. Not a day went by that I wasn’t writing, studying and researching (I did the first year of my Master’s from the nursing home, which I’ve now completed). I had a hospital bed and a tray table and a laptop, my key to the world. I could have watched movies or played video games, but I worked incessantly, after surgeries and ER trips, and I worked on my thesis from the critical care unit. It might be a little backwards in terms of economics, but I did all of that without compensation, so I reasoned to myself that this fundraiser was the return on all the good I’d been doing without pay for the last year.
As the first night of my fundraiser closed, I was thrilled to have some coins rattling in the pot. I had six months until the conference, and any little bit helped. I woke up the next morning to an email that I’d had a donation during the night. I went over to the site…
The fundraiser was complete. A complete stranger had plopped several hundred dollars into my lap.
After verifying that it was real and trying to figure out what on earth had just happened — well, it turned out that autistic community is what happened. Somehow, and I don’t know how, a gentleman who lived many states away came across my fundraiser. I wrote to him, and it turned out he is on the spectrum. He said he’d been in my place some years ago and was grateful when someone helped him, so he wanted to do the same. “Go and do good things,” he said. It was almost like it was the only thing that made sense to him, that to walk away from a need he could fill without doing so was inherently senseless, which, oddly, made me stop and think that his uncommon response makes a lot more sense to me than the the usual human reaction of “someone else will take care of that need.” We’re still connected, and I was thrilled to be able to tell him about the event afterward. I got to speak on a panel, and I also had the privilege of speaking as part of a panel of some of the mentors and friends I respect most, including Chloe, on the main stage, under the lights. He was glad to hear and shared my post with his wife and kids, but there was no self-congratulatory fanfare at all, it was like he’d handed me a dollar for a water bottle. There was no sense of filled obligation. He was glad something he had to do had at least done something good. It’s simple, not in a way that makes it unimportant, but in a way that suggests it’s something that should happen far more than it does.
Of course I hope someday I can pay it forward, but money isn’t likely to be a thing I have in much quantity. But that one good deed, granted, one huge, incredibly selfless and kind good deed, follows me every day. I look for opportunities to do good, whether with my writing, my time or situations in which the $5 in my pocket does more good for someone else than it would for me. When a kid picks out a cookie and Dad realizes he only has a credit card, which the bakery doesn’t take, I’m confident in saying that my dollars are better spent there than on a donut for me. It’s not that I was a curmudgeon before, but being the recipient of an uncommonly kind action gives me the confidence to be kind in ways that others might find a little oddly generous.
But I’m a square peg. I’ll always be a square peg. I’m immensely proud to be part of a community of square pegs who do things like Leigh did when she reached out to a lonely me and helped me find my crowd, like Chloe did when she took a chance and became a best friend, like the mentors who spend their lives making things better for the next generation, and like the stranger who made it possible for me to keep advocating (and to take the one chance each year I have to be together with my autistic friends). I’ve found my people, and when I’m with them, I can leave my special square-hole drill at home.
I still take it everywhere I go, though, just in case I find a chance to be uncommonly kind. If I’m going to be weird, and I don’t have much control over that, this is precisely the kind of weird I want to be.
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