Back in late 2012, I published a post about a guy who asked me point blank if I was autistic. It was a pretty irking episode for me, and I stewed over it for about a week before I posted about it.
Now, I do have autism spectrum disorder (though at that time, my condition was called PDD-NOS, and was considered an autism-related disorder. A couple years back they put out a new diagnostic manual for this sort of thing, and now PDD-NOS and Asperger’s are just plain autism. At least now it’s easier to say and remember). I contended then and I contend now that while I am on the spectrum, it does not define me or is the most definitive trait about me. I don’t say, “I’m on the spectrum, so I can’t do this or that.” Nor do I use it as an excuse to do things I know I shouldn’t. It’s just one facet in the many that make up my life.
But, as I grow older, I see more and more how my autism has affected my life, especially since graduating high school.
I honestly didn’t know I was even on the spectrum until I was in my late teens. Though honestly, spectrum is not the best term for autism. A spectrum makes you think of a long bar where whatever the bar signifies becomes more intense as you move further along it. Really, autism is a group of characteristics that present themselves in affected individuals, and differs from person to person. Perhaps a better name would be autism characteristics disorder, but I’m not on the board of whatever organization names these things. At any rate, I apparently displayed a lot of characteristics that typify autism from day one, according to my mother (and she’s pretty reliable on this kind of stuff). Of course, she and my dad didn’t realize what the problem was until I was in preschool or so. Up until that time, they just thought the stuff in the baby manuals didn’t apply for every baby. It wasn’t until a teacher told the I was having a hard time understanding what was being said to me that they realized I might be a bit more different than they imagined.
Thus started years of therapy, which I didn’t realize the purpose of until much later in life. I knew I was receiving one-on-one attention, and that I was the only person I knew doing so. I knew I had doctor’s appointments that other kids didn’t go to. I just didn’t question it or think about it too hard. It was part of life, like watching TV or sitting on the toilet. You can think about them pretty hard, but it’s not necessary.
I also didn’t think much about the repetitive behaviors I sometimes displayed, or how when certain things changed in my environment, it could upset me and totally ruin my day. And while I got along well with people, there were times where I would do something, someone would react badly, and I wouldn’t understand the big deal.
Understand, I’m high-functioning. I can get by in society pretty decently. I just see and interact with the world a bit differently. It’s like rearranging a puzzle piece to form a new picture, with the pieces being able to fit where they’re not supposed to go, and I don’t see the difference between the intended arrangement and my arrangement. And that’s probably why I didn’t realize until my late teens, when my mother clued me in that I was on the spectrum.
Autism is often like a weird arrangement of this.
Of course, once I got to college, it became much more prevalent in my mental awareness. I met every week with a counselor at Ohio State’s Office of Disability Services, and partly through their intervention, I had my own dorm room with attached bathroom in one of the calmer dorms on the north end of campus for two whole years (among other benefits)! When I graduated, I got my internship in Germany through a program that helped people with disabilities get internships and jobs with the federal government, and a year later that same program helped me get my current position. In my job, I often help people with disabilities receive accommodations for their disabilities so they can continue in their jobs, and use my own disability to help me empathize with the people I’m working with.
So yeah, my ASD has had a huge effect on my life, whether I realized it or not.
But it does not define me. This blog isn’t Rami Ungar the Austistic, it’s Rami Ungar the Writer. I place a lot more emphasis on the writing aspect of my life to define who I am. Judaism as well: I think my religion has done quite a bit to shape me. Not to mention anime and manga, the many books I’ve read throughout the years, my relationships with people, the things I’ve learned in school, the places I’ve been and the things I’ve seen. Those have had just as much effect on me as autism has. And that makes sense, because human beings (I admit, I am a human being, despite my best efforts to say otherwise) are multifaceted creatures. It’s rare when a single one is the defining quality.
And by the way, I don’t see my autism as a disability. I mean, it is a disability, but I don’t necessarily see it that way. Remember that puzzle metaphor? I see my ASD as an opportunity, an opportunity to see the world differently and use that viewpoint to make a difference. Whether that is through my writing, through work, or just by trying to be a decent person. And I wouldn’t give that up for anything.
Rami Ungar The Writer 
Well, I had no idea, so there you go. As for disability – yes! I think there is a difference between a disability and a Disability – the second being more a mindset where in people decided they can not do things. (I know someone who has the second. Rather than look at new ways to do things or keep doing the things she wants to do, she will instead cry “But I am disabled! I can’t! I can’t”) and in that case it is a real disability because it impairs her ability, but in the other cases, I think it’s more a challenge than anything disabling. I’m a bit dyslexic (not as bad as many others) and I’ve always just looked at it as something that means I need to take an extra step or two sometimes. (like I used to have to copy/paste everything I typed online into word and spell check it before I could post a comment, now browsers have spell check built in – whoo hoo!) I also have Sjogrens and a pile of “disorders” and “syndromes” but again, they are just something that is, not a defining thing – but yes, they do shape our lives, however, as you’ve noted, they just don’t have to shape them negatively. I think yours has shaped your life in a positive way and has encouraged you to have a job that helps others (can’t get more positive than that!) 🙂
Capital-D Disability…I need to write a character with that someday.
I’m glad my ASD has shaped me positively and in a way that can help people. I hope I can continue to do so, even in a world that’s become that much scarier. No matter how I’m doing it.
Along with Jo, I didn’t know either. I never would have guessed it.
Janet Nitsick (one of the authors on the Self-Published Authors Helping Other Authors blog) has two grown autistic children. One lives in an autism center, and even though he is higher functioning, he could not live on his own. He also has schizophrenia with paranoia (he thinks everyone thinks he’s dumb), so he tends to act out violently at times. (Hence the home he’s at.) Her other son is low functioning, and since he’s not violent, he still lives at home with her and her husband.
My dad had schizophrenia (he wasn’t violent but he did have two nervous breakdowns), and he was able to keep a good job thanks to a good psychiatrist who worked with him and gave him the right medicine. I have a tendency to be OCD about cleanliness and have to watch the “triggers” that can aggravate the situation.
I really think mindset plays a big part in what we can and can’t do. Some people, obviously, can do more than others, but the decision to do the best we can with the cards we’re given does make a huge difference. I know someone who let hers pretty much lead her down a path where she ended up being unable to do anything. It was sad to watch.
I had no idea about you or Janet either (though I was aware that she had autistic children). Yes, mindset plays a huge part. What our minds and/or bodies have shouldn’t necessarily tell us what is possible. Look at Temple Grandin, or Stephen Hawking. They have made revolutions in their fields, and they never let Disability take them down.
I hope my children – both have ADHD, one also falls on the Aspie side of the spectrum – will feel this same way when they are adults. I have always been of the opinion that they can achieve anything they set their minds to so long as they don’t try to use ADHD/ASD as a crutch. (And, for what it’s worth, I never guessed you were on the spectrum, either.)