Sometimes, It’s Nice to Know that You’re Not the Only One.

Earlier this morning, I had a small, yet profound moment which was worth pausing to take notice of.

Since I’ve been unable to be as involved lately with the autism community at large (namely, I have been unable to blog, tweet, or read anyone else’s blogs), I’ve been feeling a bit disconnected. It’s strange how this might happen, even if your loved ones are also on the spectrum: my fiance shows signs of being  a spectrumite and I conjecture that if he had been diagnosed as a kid by DSM-IV criteria, he would probably be diagnosed with PDD-NOS. Also, we suspect that another one of our family might also be on the spectrum as well.

What’s also lead to the feeling of disconnection is a couple of other things: 1) some ongoing personal issues, and 2) my inability to do any meaningful reading and research. Also, I’ve been attempting to finish two art pieces for some upcoming autism-related art exhibits (which I will post about as soon as I have additional information), which has been taking my time too. Also, my workload at my day job has been just…insane.

But this morning, I was speaking to my fiance about the other family member in question. She has a tendency to be very ritualistic and a bit of a stickler for the doctrine and dogma of the faith in which she was raised — it’s almost as if she regards some rituals, orthodoxy, and the doctrine/dogma of her faith as rigid rules instead of guidelines. Unfortunately, her husband tends to reinforce this tendency in her with his own insistence on doctrine, dogma, and ritual. I proposed that the tendencies towards routine and the rigid following of rules — which tend to be a common spectrum trait — may be a result of her being on the spectrum.

Then, my fiance came up with an alternate answer. He reminded me of this line from “You Don’t See It“:

“If I like you, I tear encyclopedia pages and pictures from off my walls to give to you as gifts.”

And it was then that I realized that she had been doing the exact same thing.

In the beginning of their marriage, she shared her faith with him — including the doctrine, dogma, rituals, and orthodoxy. Throughout her life, especially when she was younger, her faith was an important aspect of who she was. She may have only understood it as a set of “rules”, but still, the subject fascinated her.

Just like poetry, mythology, The Doors, and R.E.M. fascinate me. Just like pipe organs, Christianity, the paranormal, and unsolved mysteries fascinate my fiance.

All of these, no doubt, fall into the category of those “narrow, special interests” that it’s been said that many people on the spectrum have. Of course, there is the very issue of defining what a “narrow, special interest” means, and how that definition might be subjective (for example, what’s the difference between my obsession with Jim Morrison and perhaps a neurotypical’s obsession with Lady Gaga?) With all of that aside, I’ve noticed that many on the spectrum I’ve conversed with do tend to have “favorite”, pet subjects, and these interests tend to be varied and diverse in and of themselves. A friend of ours is mildly obsessed with pipe organs and particular organ players, as well as the Catholic order of which he is an oblate. I’ve met spectrumites with interests in anime, butterflies, music groups, and….and…well, you get the point.

And what do we do with those interests? I’ve noticed that we tend to share them. Years ago, my interests were even more narrow…in college, I was literally talking about R.E.M. all of the time (you can imagine how sad I was when they called it quits last year). In various times in my life, I’ve been interested in the Harlem Renaissance, Black American History, animal rights, the Bible, women’s suffrage, Nirvana, and other subjects. This is what I call “ripping encyclopedia pages” off our mental walls, and then sharing them with those around us. I know I do this in an attempt to find common interests — but not only that, these subjects are like an area of comfort for me, providing enjoyment and positive emotions.

I also know that I try to understand the world through my special interests. For example, the Enneagram, a personality typing system (among other things), is one way I try to catalog and understand people. In terms of music, I might compare something new I hear to an already special interest — I might compare their an aspect of their music to an equivalent in the music of The Doors, R.E.M., Nirvana, or another band I am very interested in. Lately, I’ve been trying to figure Nicki Minaj out — and her alter ego, Roman Zolanski — because I’ve recently concluded that I am bigender (i.e. fully male and fully female, having a distinctly male persona and a distinctly female persona — from what I understand, this is considered a subset of transgender) due to my having a distinctly male persona (“Nick”) as well as “Nicole”, the person most people see and interact with. You could say that for me, my special interests are “lenses” through which I see the world.

And once I realized that my fiance, and the aforementioned family member, do the same thing, I remembered once again that I am not alone.

And we are not alone.

It’s easy to feel alone — feeling alienated from a world that doesn’t seem to be built for me. I know I am not the only one of the spectrum who has felt this way. That is why we need each other — and that is why we need to help each other.

During our last session, my counselor suggested that my fiance and I begin a support group for autistic adults (likely, this would be for adults 30 and over, as there already is a group in our area for young adults). If things cool down in our personal life, we definitely might do this — we know no one else in our age group in our city on the spectrum.

But in the meantime, I will take comfort in the fact that I am not alone. And that we are not alone.

-Nicole

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3 thoughts on “Sometimes, It’s Nice to Know that You’re Not the Only One.

  1. Very interesting post. My special interest for decades was religion. Specifically Protestant Evangelical Christianity. I saw everything through that lens. I took great comfort in the rigid rules and expectations. So imagine my dismay when my special interests expanded to include neuroscience and evolutionary sciences. My “safe” religious world imploded. Now I thoroughly enjoy scientific articles with almost the same intensity I once invested in religion.
    Hope you are able to start a group for autistic adults in your city. Love reading your blog.

  2. We have a good deal of spectrumites in our family. My mother’s family is filled with devout, orthodox Quakers, that very much fit your description of special interest. My mother’s Uncle was very eccentric and would see patterns of the scripture in everything. He would milk goats after Sunday services and present the milk to all th family’s children with specific ritual, prayers and instruction.

    The beauty of special interests colors many aspects of faith. Devotion arises from an internal drive–you cannot force someone to embrace faith. I respect and treasure those who glow with fervour, be it for a religion, REM, or elevators.

  3. Oh Nicole, you’ve done it again! That’s my life you are writing about, filled with one obsession after another. OK, the obesession are not quite the same, I find no mention of the Confederate general who invaded Ohio, and you have skipped the Cleveland Indians and major league baseball the way it should be played. And Dizzy Gillespie and Be-Bop and classical music & Saturday afternoons listening to the Metropolitan Opera. And a childhood filled with pretending I was different characters from the books I read – a dozen a week or more, but always I was Laura of the Little House. Oh yes, my aunt the school principal who investigated every major disaster that ever hit Cleveland Ohio, and shipwrecks on Lake Erie and the history of the Great Lakes. And my mother who always referred to the “War Between the States,” and imagined her return to Kentucky where people had names that one could pronounce and no one asked her “How do you spell that?” And on and on. Now I’ve learned that nothing in the human strain is unusual, we are all more or less of the same cloth, only the degree is different. And some people can use that difference to be called “Genious” and others will spend their lives in small rooms with the doors locked and the window shades pulled all the way down.

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