Those of you who’ve followed me for a while know that I am on the autism spectrum, and that I’ve had opportunities to speak about it a couple of times, including a widely-circulated video which I posted back in March. I was able to get my job partially because of my autism, and a lot of the work I do involves working with, accommodating, and advocating for people with disabilities in the workplace, including but certainly not limited to autism. I don’t go around everywhere broadcasting my diagnosis, but it does come up on occasion.
One of those recent occasions was for my organization’s newsletter. I was asked to write a short essay, about a page long, about having a disability, about the program that helped me get a job in my organization, and what that’s been like. That article was published recently, along with a couple of other testimonials, and it’s been getting around. A lot of people have been coming up to me and thanking me for being so open with my story.
Today, I got an email from someone in my organization who had read the article, and had contacted me asking for advice. His adult nephew had been diagnosed with autism a couple of years ago, well past the point where intervention can be at its most effective. And in the years since his diagnosis, his life has not gotten easier. I won’t go into details, but it was heartbreaking to read the man’s email and to hear about his nephew’s suffering.
At the end of the email, he asked what could be done for his nephew, and if maybe the program that helped me get my job could help his nephew.
What do you say to something like that? What sort of comfort can you give when there’s already so much pain?
I don’t know if I ever meant to be an advocate for people with disabilities. But over time, that role has kind of been molded around me. A good part of this has been because of my job. As I said, I have to advocate for people with disabilities in the workplace. To that end, I’ve learned how to market to people who are able-bodied why they should hire more people with disabilities. I can tell them that people with disabilities have a much lower turnover rate than the general population, 8% compared to 45%, that getting them accommodations rarely gets anywhere near the $500 mark, and then back all that up by talking about my own satisfaction with my position, and how the only accommodation I’ve needed for my ASD was permission to listen to my iPod or audiobooks while doing certain tasks. I’ve also been asked to do essays, like I did for the newsletter, and the video I recorded back in March. And sometimes it just comes up, like when explaining how I got my internship in Germany (yeah, my ASD played a part in that), or using it to illustrate a point in conversation, or a hundred different scenarios.
One way or another, it seems like I was meant to be an advocate, especially at this point in my life, when I’m doing so well at work, living on my own, and even as a writer.
But as a giver of advice? I’m not sure I expected that. And I get why it’s happening. Autism is a scary diagnosis for anyone to get, as well as for the loved ones of those diagnosed. It’s a disorder that varies widely from person to person, it can never be cured, the cause is still unknown,* the number of people being diagnosed with it has grown exponentially with improved diagnostic tools. Depending on what traits are present or what other disorders are present with autism can also affect everything from therapy to school choices to possibilities in adulthood. And when the diagnosis is made in adulthood, as happened with the young man whose uncle emailed me, it can be a sort of terrifying that no horror story can tap into. With all that in mind, hearing from someone who not only has the same diagnosis, but is successful in the real world, can be a soothing balm for the mind and soul.
I just wish I had all the answers. Or that I was more confident in the answers I have to give.
But if I’m going to give any sort of advice, it’s that we shouldn’t deny or try to hide our diagnoses. We shouldn’t try to be “normal,” because normal doesn’t exist, especially not for us. We process the world so differently than everyone else, but that doesn’t mean we have to be ashamed or afraid. I’m able to succeed and do the things I do every day because I process differently. So embrace your different. It may be called a disability, but it can be an asset too. Some of the greatest innovators and creators the world has ever known have been on the spectrum. And once we learn to work with the issues we have, we can learn to become those great innovators and creators.
And don’t be afraid to look for or ask for help. Even if you’re diagnosed later in life, there’s still plenty of resources for you. Many states, including my beloved Ohio, have programs that offer help and direction for people with disabilities and families, whether they be children or well into adulthood. Many schools have or are adding programs to ensure the disabled can take full advantage of their educations. More and more employers are recognizing the importance of hiring people with disabilities, and what they can contribute. We’re not being left alone like a ship in a storm. There is help.
Living my life strong, no matter what my diagnosis is.
And it’s important to be open about your diagnosis, especially with your friends, family, coworkers and teachers. Keeping it a secret has never helped anyone get by. It’s better to be open, so that those around us are better equipped to work with us, and join us on our journey as we work our way through life. I know it’s scary, and you don’t want to be any different than anyone else. But remember, there’s no normal. We’re all different, and many of us wear it on our sleeves. Might as well display this different too, if only to make life a little easier.
I hope you find this helpful. I hope the man who emailed me today found my advice helpful. And if you or someone you know has autism, I hope that no matter what, you or your loved one is able to hold their head up high and know this: you are great the way you are.
*And if you’re about to comment saying some bull about vaccines, let me tell you a story, since anti-vaxxers seem to value testimony more rather than scientific consensus: my mother has told me a few times that I was different from the day I was born, well before I received my first vaccine. I was nothing like the baby books predicted I’d be, and it wasn’t until my younger sister was born that she saw any of that stuff. I trust her word, so that means vaccines had nothing to do with the way I am. And if you still insist that vaccines had something to do with the way I am, you may be calling my mother a liar, and them’s fighting words.
Rami Ungar The Writer 