Isolation, Loneliness, and the Angry Aspie? An Open Letter to the World and My Readers

While I have always tried to be truthful and revelatory when writing posts for this blog, in this post I am probably speaking with the most candor, bluntness, and with the rawest language I have used in a long time. I don’t see the need for a trigger warning, except that I am speaking about negative events and feelings I have been keeping private for a long time. Also, I will be using more profanity that my readers are used to seeing here on WWA. If that doesn’t scare you, read on. I should warn you that some of this may not read very cohesively and might seem like a very long rant, but I have had a need for a long time to say some of these things.

Isolation and Loneliness
When I was a little girl, I was a veritable chatterbox. Some of my earliest memories from around age five or six involve inundating other children, people my family knew, and my own parents with an explosion of words – what I was thinking or feeling, what I had been reading, things I’d seen earlier in the day that I thought were really marvelous, spectacular, or even beautiful, and so forth. I’m even guessing that some of these were lengthy descriptions of something related to my Aspie “special interests”. I remember Dad having to tell me to stop chatting and eat my food at dinner, as I would stop eating at some points and just start talking.

You probably wouldn’t think that the above description fits me if you were to meet me today. Yes, it is true that I can be very opinionated and expressive. In the past, I’ve not hesitated to “put myself out there” in terms of my poetry, my experiences with being an Aspie, or other things that interest me (anyone that’s chatted with me online about The Doors can attest to this). However, within the last few years I have been finding myself feeling more isolated and lonely than I have since I was a teenager in the small town in which I grew up, trying to negotiate the social landscape.

Believing that it was not wise to allow too much personal information about myself on the Internet, I chose not to speak of my experiences and feelings in this regard until now. In and of itself, this would not be a big deal. However, events were going on in mine and my fiancé’s lives that only worked to add distrust and paranoia to our already growing sense isolation. Our family was certainly of no help and in many cases, caused the very problems we were experiencing. Other events upon which I do not care to elaborate began to make us feel even less secure and more fearful. Although it may not seem obvious to those who know me from the autism and poetry communities, I was beginning to feel the need to close myself off and withdraw. And that, my friends, was where I began to lose the idea that I understood or had a true grasp on reality.

What does this have to do with autism or Asperger’s? Plenty. I’m sure there are many autistics or Aspies reading this right now who can identify with the feelings of isolation and loneliness of which I speak. While I fight for the emphasis of the positive things that autism can bring to our lives – our unique talents and gifts that enrich ourselves, our families, and our societies – I also believe in authenticity and honesty in revealing my personal and unique autistic experience. We need to be honest about the loneliness and isolation we may feel plus the difficulties we experience while navigating a neurotypical world. I figure it’s been long overdue for me to talk about this in my own life.

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To Be Seen, or Not to Be Seen?

To be seen, or not to be seen?

I have spent a good percentage of my 36 years of life trying to figure out the answer to this particular question, which has expressed itself as a tug-of-war dialectic in my heart, mind, and soul. And the truth is, some days, I cannot decide which it is that I desire.

I was reminded of this struggle of my own upon reading this post on The Third Glance blog. The author speaks her own childhood growing up with autism and I found some of her account mirroring my own. I’ve quoted some of her post below to illustrate what I mean:

“She knew that if she complained, the consequences would be even scarier at home. When she first told her parents she wasn’t fitting in, she would get ‘talked to’, told she needed to try harder, that she needed to stop using big words, that she was obviously deficient. When that didn’t work, the responses got scarier, so she stopped saying anything…She learned that repeating the big words she heard in books would cause the other students to laugh at her and tease. She learned that no one else cared what happened in her books, or what she had just learned about her favorite things.”

I was reminded of my own childhood and my own struggles. Years before I knew that I was autistic, I knew that I was different. While I’ve said this before, I say it again now because there are people wandering around, like I was, without answers. There are children, teenagers, and adults who struggle with the decision between conformity and difference every day. Some, like the author of Third Glance and me at various points in my own life, choose to become invisible:

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Aspie Poem: Code

Dear H: for those of us to whom words
sometimes do not easily run, saunter, or even
amble: we speak in code. We think in code. We
construct our languages painstakingly
like little Tolkiens, separated by time, distance, and space:
but the Hobbits and the Elves ain’t got
nothing on us. We have the dexterity
of pictures, objects, or even
moving film to send messages to world,

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Conspiracy Theories, Autism, Fear, and Life on the Crazy Train

Mental wounds still screaming
Driving me insane
I’m going off the rails on a crazy train

— Ozzy Osbourne, “Crazy Train”

I’ve been thinking a great deal lately about conspiracy theories. Or, more accurately, I’m fed up with conspiracy theories.

My fiancé and I have been discussing these theories against the backdrop of world events for the last several years. On our dining room table there is a stack of books a couple of feet tall that I’ve been meaning to read about conspiracy theories and related subjects such as the premillennial dispensationalist interpretation of the Book of Revelation and the fundamentalist Christian worldview. To be quite honest, I’m mildly fascinated with conspiracy theorists and I’m trying to understand how they think: if I’d had the time to read these books lately, conspiracy theories would have become another special interest by now.

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Poem: Glass and Concrete (For World Autism Awareness Day)

I place my hands on the glass wall,
pushing against one more boundary
between me and the world, as if my bare hands
could make the wall more solid, less breakable: and when
I lift them up, I see the remains of one language
I speak, an entire matrix of lines, swirls, and whorls
dictated by DNA, stamped onto the glass
in oil and sweat. The handprints won’t tell you

about the endless rooms in my attic brain full of
my memories in Super 8 film rolls coiled up and sleeping
which have been magically appearing since I was a year old;

or the rooms of computer hard drives storing facts, numbers,
and encyclopedia notes numbering somewhere in the octillions;

or the glass-shatter heart that sometimes fractures if I breathe,
or suck in air from the shock or suspended surprise
of someone else’s pain, or when one of my own free-floating
pieces of celluloid with razor blade edges slices my fingers
when I yank it out of my film projector and try
to stuff it back into the canister it escaped from. The handprints

won’t tell you that our family’s collective lips are sealed
about our green strangeness, the unuttered word
that I alone out of the clan speak: autism. The handprints

won’t tell you that I shut my eyes and imagine
the lost, the mute, and the gaunt lit with pain
and pulling razor blades out of their throats
appearing as time-delimited half-tones behind this wall:
Tommy the pinball wizard;
my grandmother made of cedar beams, Indian blood, and elocution;
and a lizard poet, white knuckled, hanging on
to a rollercoaster of pain for dear life,
just to name a few. But the handprints will tell you
that I am human.

I wonder if you can see them: sometimes, I know
that on your side, you only see graffiti-infested concrete,
slapped and glued with headlines about
how our hearts are hollow, how we live as alien mutants
among you in a universe of uncertainty, and how
the word “never” seems to creep into your speech about
us. And you wonder why I erect a glass wall? Some days,
I am forced to pour concrete and hide behind
the wall of cold cinnereal while I listen to the noise
coming from the other side and my eyes
flood and create another ocean: but eventually,
I raze the walls that I construct, and all that separates
me from the world is a stately barrier of glass.

Place your hands on the glass and line them up
with mine: can you feel
the warmth from breath and skin, sweat and
rhythm, blood like tom-toms pounding and marching
all through my body? This is how we can be,
hand to hand, eye to eye, toe to toe, once I feel
I can approach the glass. We touch, and it can melt away
into a membrane, or it can eventually evaporate
and become a ghost that we used to look at each other
through: this is the understanding I need, and the vision
that you need. But as long as you insist on concrete
slapped with pity, pithy headlines, and ignorance,
you will never feel my handprints. You will never
feel my warmth. And you will be convinced that I am a
comic, hollow being that can never feel. And all
the while, I will be drowning in another one of my oceans
behind that wall.

Written 4/2/12
© 2012 Nicole Nicholson. All Rights Reserved.
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I wrote this to share today because it is World Autism Awareness Day (April 2, 2012). I hope you enjoy the poem and that it gives you another glimpse into my world.

-Nicole
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The Empathy Question, Revisited: Theory of Mind, Culture, and Understanding

The recent opening of Rachel Cohen-Rottenberg’s new Autism and Empathy website has started me thinking about the whole empathy question in regards to autistic people again. In my first post about autistics and empathy, I mentioned Theory of Mind issues as one of the possible reasons why there is a perception that autistic people lack empathy. With what I had read about Theory of Mind at the time, I’m now reexamining the concept and wondering if I had gotten it slightly wrong, especially in light of the recent challenges that other autistic writers have made to the prevailing ideas about autistics and Theory of Mind.

The Sally-Anne Test

The Sally-Anne Test

The prevailing idea about autistics and Theory of Mind goes something like this: having good Theory of Mind means that a person is able to determine the contents of both one’s own mind and the minds of others; conversely, autistic people are unable to determine or reflect on the contents of other people’s minds. In short, the idea is that autistic people are unable to understand other people’s minds and know that others think differently than they do. This idea was put forth in Simon Baron-Cohen’s 2001 paper on the subject, and I’m sorry that I didn’t unpack it a little further before writing my first post about empathy and autistics. Now that I have, I again have to say: what a load of bullshit.

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More Myth-Busting: New Autism and Empathy Website

Rachel Cohen-Rottenberg of Journeys With Autism has created the new Autism and Empathy website to “undo the myths about autism and empathy that have stigmatized autistic people for so long”. She and other writers featured on the site will be speaking about autism and empathy from personal perspectives as well as exploring the question in terms of the medical and scientific.

I encourage you to check out the site. She has already posted an excellent article which breaks down empathy in terms of its three types: cognitive, emotional, and expressed empathy. My poem, “Color (A Modest Plea)” also now appears there as well.

-Nicole

Aspie Obliviousness: A Good Thing?

Head in the Clouds by Wings of Dust
Head in the Clouds by Wings of Dust

How many times have you been told that you don’t pay attention enough, aren’t aware enough of your surroundings, or even worse, that you have your “head in the clouds” all the time? I heard this quite often, especially as a teenager and coming from my absolutely favorite aunt (NOT!). If you remember my post from a while back that talked about EMSs (early maladaptive schemas) and negative core beliefs, you’ll remember that sometimes we form these beliefs based on negative feedback from significant figures in our childhood – parents, relatives (well-meaning or not) and the like. So as a result of her negative comments, I developed a sort of hypervigilance which basically required me to pay attention to everything in my environment. Literally.

You can imagine that for someone on the autism spectrum, this would be downright tiring. And it was. I was constantly scanning my environment for details, dangers, etc., especially when I would move from one environment to the next. It would take me a while to get comfortable when I arrived into a new room, got out of the car and went into the house, and so forth (you don’t want to even know how taxing it is to try to notice EVERYTHING – including passing scenery – when you’re in a moving vehicle as a passenger). When I was in my early twenties, I dispensed of this habit: unfortunately, some events in my mid-twenties reactivated a healthy (again, NOT!) dose of post-traumatic stress disorder that I had mostly gotten rid of with help from my fiancé – the same PTSD I’ve mentioned that I am battling right now. And with the PTSD came the hypervigilance and the environment scanning. The only good thing that has resulted from this is my tendency to store visual details, which I can access later for my writing.

I recognized near the end of last week that this practice was downright exhausting and no longer worth my time, so I decided to stop completely. I decided that I was only going to pay attention to what was important, or what caught my notice. And couple of days later, this new approach paid off. Continue reading

I’m at the Intersection of AS and PTSD…

Last I checked,
I wasn’t born with apologies – though some would demand
that I wear them for the apocalypses in my DNA.
(From my poem, “Dear Earthling”)

After a bit of a hiatus, I am coming back to you with a post about something that has profoundly affected me for a long time, although I didn’t realize it until earlier this year. To put it another way, I live at the intersection of AS and PTSD.

Now, what do I mean when I say this? For those of you who have been following my blog, you know that I’ve spoken of my childhood and teenage years, which included physical, emotional, mental, and sexual abuse, as well as neglect – most of which happened between ages twelve and eighteen.

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To Med or Not to Med

 I know how you
move into me. You come
in tides, squeezing through every pore
like nightfall that doesn’t know how to stay put. You don’t know
how you rip apart my senses, bleeding glorias as you
pass though me in double osmosis.
(From my poem, “Touch”)

If you’re reading this post and are on the autism spectrum, you’re already aware (in some cases painfully) of how sensitive our nervous systems are. This sensitivity affects many aspects of our lives, from difficulty tolerating sensory stimuli to impaired ability in handling stress, as I’ve mentioned in previous posts.  I’m going to deal with the sensitive (no pun intended) subject of using medication (such as SSRIs, other classes of antidepressants, and other kinds of medication that affect mood and brain chemicals) in this post.

From what I’ve observed thus far, this topic has been debated from multiple viewpoints, even outside the autism community. Just Google the subject of antidepressants and autism and I’m sure you’ll be overwhelmed by the number of results. Certainly many of us have heard about overuse of these medications and horror stories about side effects, ineffectiveness of medications, or symptoms worsening – or we may have gone through these experiences ourselves. And of course, there is always the question of who benefits by the medication: there are stories of medical professionals pushing such medications to the parents of children on the autism spectrum in order to make their behavior more “tolerable”. And of course for us adults, there’s also the question of something being for our “own good”.

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