Feeling alien [REBLOG]

Sonnolenta:

An excellent post from Ask an Aspergirl about the sensation of feeling alien, and not able to fit quite right into a world created to meet the needs of neurotypicals.

“To know how much work it takes to live a functional adult life with my Autistic brain — a neurotype that struggles to fit itself into an allistic world — is tiring. And in this exhaustion, I feel wrong, even though I’ve struggled to thrive among all of these things. Part of me wonders if I just worked harder I could be better. That’s the internalized ableism talking.

Yes, you have executive dysfunction and social disability, but just stop being that way, it says. Stop shaming yourself. Why do you do that anyway?

These are the self-critical parts of myself with whom I dialogue. But I can’t quell the shame on my own because internalized ableism doesn’t begin with me. It is reinforced by faulty expectations and misunderstandings of what it is to have a disability. I’m learning to ask for help as I question this narrative — of what it is to be functional, independent, or even an adult. I’m changing these mile markers.”

Originally posted on Ask an Aspergirl:

The past few days, I’ve been rereading Rudy Simone’s collection of interviews with autistic women, Aspergirls. I remember reading Simone’s book for the first time and taking copious notes; these women whose stories were contained in these pages sounded like me. I didn’t feel so alien, and as I continued to immerse myself in its narrative, I felt known.

In returning to Aspergirls, I noticed something else: These women were working through the shame of being themselves in a world ill-equipped for people like them. To recognize one is autistic in one’s 20s (or later) is a jarring experience, but it can also be incredibly comforting: I’m not wrong; I’m different and that’s okay. But it’s difficult to shake…

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Foothills Trail Hiking: Bad Creek to Thompson River 7.42 miles 1/30/15

Today we had plans to hike in Georgia, and do a little geology lesson at the Laurel Creek Corundum Mine, in Rabun County. We set off completely prepared for this field trip, but our best made plans were squelched by a downed tree on Burrell’s Ford Road. Despite this setback, we meandered our way back into South Carolina, and turned Northward- to explore a section of the Foothills Trail we had not yet hiked. We ended up in Duke Power @ Bad Creek on a whim. I’ve read that it’s a great place for stargazing, as it’s a dark sky area in which you can bring your telescope and also do astrophotography without light pollution raining on your parade. Wanting to check to see the suitability of the location for that, I also realized that there is a Foothills Trail access there- I had thought the access point was the parking area right after the state border sign.

So we parked and hiked! The area between Whitewater Falls and Pinnacle Mountain is the only area of the Foothills Trail we have not hiked. Accessibility is a big part of the reason why- there are simply not many/any roads where one can park and do a series of out and back hikes, in order to cover the area with several day hikes. From the top of Sassafras Mountain I can park and do two separate day hikes in either direction (a day hike for me is 5-7 miles in, and then the same distance back), but to reach deeper into Jocassee Gorges, I need to organize being boated across the lake, and then picked up 7-8 hours later- and that could get expensive- and even then, there’s no way to cover the entire expanse as day hikes. So… until I’ve figured out camping gear and all of the things that accompany that, my Foothills Trail access remains exclusively day hikes which I can access without 4WD and safely park.

There was a large group of hikers that had a meet-up to hike, at the same time we started. They took the spur trail to Upper Whitewater Falls, so we were alone the entire way out and back. When we returned over four hours later, they were sitting in a large circle in the parking lot, sharing a nice after-hike meal, soaking up the afternoon sun. I’ve always thought I should try to meet people who have similar interests as I do, but I can’t seem to bring myself to group hiking. When I hike I don’t want to talk, or socialize. I want to be alone in my thoughts in nature. When we come across groups on the trail, we try to put as much space as possible between us and them, and move away from the cacophony of voices. People of normal neurology most likely don’t experience this.

Today we hiked in as far as the beautiful and boulder-strewn Thompson River. GPS map of the hike here- we were up in North Carolina and I didn’t even realize it! We turned around at the Thompson River, because we were planning to hike the short spur down the Lower Whitewater Falls on the way back. Turns out we were quite tired from all of the steps we traipsed up and down… so we shall save that for another trip. Doing those steps with a 40 pound backpack has got to be quite a chore! Mine weighs in at only ten pounds and I was often breathless. Goals.

Some of my photos are far views of Lake Jocassee from the scenic byway and the visitor overlook in the Bad Creek area. (The visitor overlook is a perfect place for stargazing- there are no streetlights there, and little to no light pollution according to this dark sky report) The parking area where the Foothills trailhead is- is filled with streetlamps, which I presume are lit at night?). I shot today with a new lens- a prime 35 mm f/1.8 Nikon DX lens, which I recently picked up because the 18-140 mm kit lens I had is both slow and heavy. I shot with a circular polarizing filter most of the day, and then did some macro shots by trying out some diopter filters I just got. A macro lens is priced too far out of my range, so these diopters will do quite nicely for me in the meantime. My main interest in this new lens is to try my hand at photographing the milky way- I am pleased to report that I can see it clearly in my backyard on any moonless night, so am anticipating some future attempts at capturing it’s beauty in pixels.

Morning walk on Coneross Creek

Hunting season is over! What joy, for we can now walk in the woods behind our house, with no fear. Through the stands of Loblolly pine, following a well-worn game trail up a steep hill, we reach a network of old logging roads. We weave our way through areas obviously set up to bait deer- hunting stands, fields of sown clover, eaten cobs of dried corn- and make our way down to Coneross Creek. We are spoiled by the crystal clear waters of mountain rivers and streams, but Coneross ambles through the foothills with a charming beauty, the landscape punctuated by the occasional pump station, neon green manhole cover, or sharp bridge lines softened with tendrils of vines.

As Spring nears, this dry winter landscape will reveal green buds, blossoms or all sorts, and even the rare and beautiful trillium. All you need to do is stop and look closely. Nature works hard to overcome that which is manmade and foreign to her. She never gives up, she always prevails. I like that about her.

Why can’t we be like flowers?

Flowers are not perfect, but people rarely notice their imperfections. Wrinkled petals, malformed blossoms, or even torn or browning edges. Flowers are still beautiful, even when they are lacking.

When is the last time you looked at a blooming flower and thought something negative about it? I certainly can’t recall that feeling for myself.

Why can’t we look at one another the way we look at flowers? See the overall beauty and gloss over the quirks and imperfections, whatever they might be. 

The world would be a much happier place if that was the case, don’t you think?

I leave you with some photos of my amaryllis, which unfurled from the bud with a fair amount of imperfection, yet resplendent in beauty all the same…

The sweet side of homeschooling…

One of the most wonderful aspects of homeschooling C is that he is able to happily explore and develop his interests. When he was in public school, he would require several hours upon arriving home to “recover” from the sensory/emotional stress of the school day. This often meant he would take a nap, or sometimes he would break down in tears or melt down once he was inside the safety of home. School caused him to experience anxiety, low self esteem, and depression. I am happy to report that as we near the end of our second year of homeschooling, C has little anxiety and what he does experience, he is able to healthily relieve through stimming (his desk and work tables are a melange of slinkies, magnets, jars of play-doh and silly putty!). His self esteem has risen, and he no longer experiences feelings of hopelessness or depression. He’s happy, balanced, well-rested, and hopeful.

C starts his homeschool lessons each day around 9 AM, and most days we are finished by 1:30. He works steadily through the same subjects each day, starting off with math at Khan academy, Italian with Duolingo, spelling and vocab at Spelling City, grammar and composition at Time 4 Writing, Reading (currently reading the His Dark Materials series), and then finishing up with Science and History lessons from Connect the Thoughts. He does the same exact schedule each day, and does so in the calm and relaxing environment of his bedroom and homeschool room. This leaves an entire afternoon to explore his current special interest and top contender for the future- BAKING. C dreams of being a baker or pastry chef, and this past autumn, won first prize at the county fair for his delicious maple bacon chocolate chunk cookies. He bakes at least two days a week, and spends hours researching recipes, and watching his favorite cooking and baking shows, which we have set to record automatically.

C does other “extracurricular” activities as well- we hike many miles each month, often incorporating aspects of his geology lessons into our hikes, and he’s a member of 4H, currently on the sharpshooting/BB gun team. He’s a huge dog lover, and also enjoys Minecraft and will read for an hour or more on any given day of the week. But baking takes the top slot!

I am consistently impressed by his desire to try challenging recipes, interesting flavor combinations, and pressing forward even when his baking experiments fail. Recently, we’ve had delicious vanilla cake donuts with a root beer glaze, lemon meringue pie, almond meringue cookies, and these scrumptious devil’s food cupcakes with mint buttercream frosting.

C was so happy with how these turned out, and he beamed with pride as I photographed them and told him with his permission, I would like to share them on my blog. With this batch, C got to practice using the piping bag- a new skill he is trying to master. It was his idea to go outside and pick fresh mint leaves to use as a garnish, and the silvery sprinkles are one of the neat things he ordered from King Arthur Baking website, using the $50 gift certificate he won in the baking contest.

Although I have food sensitivities to both gluten and dairy, I can never say no to C’s tantalizing treats! I try to make up for the goodies with extra long hikes and lots of dog walking.

I can’t wait to see what he bakes up next!

Communication woes.

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What happens when we try to communicate, but our benevolent intent is lost in translation? Caught in the bottom of a cast iron mailbox and no one has the key? That’s how my Autism feels a lot of the time. And that hurts.

 

The thorn in my side. Trying to communicate properly and effectively. Thinking that maybe I’m even starting to “get it” or that I’m doing a good job. You know, making progress. Starting to succeed at something I’ve repeatedly failed at. Is progress possible when your entire life has been a long chain of miscommunicated and misunderstood events and ideas? I think so. Or at least, I thought so. And I will probably think so again. But right now I’m again standing at a fork in the road.

It’s well known that there are differences between how Autism manifests between the male and female sexes. And that one of the hallmarks of female autism is social and communication deficits. Unfortunately, I think what most people don’t understand is the feelings of pain and helplessness that accompany these deficits. Social/Communication deficits are my top autism-related struggle after sensory sensitivity issues. While sensory sensitivity issues cause physical pain and discomfort, my social communication deficits cause a different kind of pain-  an aching in my soul, longing to connect, but being misunderstood. It feels similar to heartache, actually.

I find it ironic that we live in a world that aims to be so accepting and inclusive of people’s differences, but then balks at invisible disability. A world that seems to blatantly shout that it’s fine and good if you’re different, but I don’t want to hear about it, and if your disability affects your abilities to interact with me? Then you shouldn’t even be trying to interact. You should be relegated to the sidelines. I’m not kidding here- this is actually, really happening to me right now. Do these people know I’m autistic and that I have pronounced communication deficits? A good portion of them do, yes. Whether or not they actually understand what it means, I have no idea. All I know is for those who do know, those who care and take this into account are the exception. It’s not that I think they are uncaring people, or that they are trying to purposefully be hurtful. It’s more complicated than that. Some have written about my being openly autistic as if it is something that makes them uncomfortable, it is “too much information”, or it is some deeply personal thing, such as a serious mental illness- that is a taboo to share. Or, if I’m autistic, then I shouldn’t be communicating or talking at all, is their stance. I should always have someone else talking for me. I should not have a voice because they don’t like my voice. It rubs them the wrong way.

That’s easier said than done in the world we live in. A world that highly prizes and rewards those who are extroverted, socially effervescent and charming to the hilt. People who can communicate with ease, with flair, and with grace. People who are pretty much the total opposite of me. I’m very introverted, and “charming” has never been a word associated with me. I don’t know if this is because of my autism or not. I just know that I’ve always been that way, and every time I’ve taken the Meyers-Briggs? I’ve been a solid INFJ. Introverted/Intuitive/Feeling/Judging is what that stands for. Famous INFJ’s are said to include Mohandas Gandhi, Eleanor Roosevelt, Emily Bronte, Carl Jung, Fyodor Dostoevsky, Florence Nightingale, among others. Apparently, a strong sense of social justice is inherent. Is there a link between this personality type and autistic traits? Sometimes it seems possible. “INFJs are guided by a deeply considered set of personal values. They are intensely idealistic, and can clearly imagine a happier and more perfect future. They can become discouraged by the harsh realities of the present, but they are typically motivated and persistent in taking positive action nonetheless. The INFJ feels an intrinsic drive to do what they can to make the world a better place.” <— Sounds like a lot of Autistic people I know! <3

Are autistic people always introverted? I don’t think so. To be honest I am not sure where a lot of so-called personality traits stop and start in relation to my being an introvert, being Autistic, and having ADHD. I have a friend with Aspergers who is far more social and outgoing than I am. She seems to enjoy online posting and interaction, and reaches out into the world in a way that I could never see myself feeling comfortable or capable of doing. A lot of extroverted Autistic people seem to be those more inclined to be activists, and to be comfortable with and even proficient with- social media and/or public speaking.

This is easier said than done given my circumstances. I have part time help with emails and customer service for my work (so that my communication deficits don’t negatively impact these really crucial communications), but other than that, I have very minimal supports. I don’t have a husband or partner who could take up my slack. I have friends around the country, many of whom I’ve known since high school- but I don’t have what I call “daily friendships” or “let’s meet for coffee friendships”. I don’t have someone I can completely hand the reins to, while I stay in my proper autistic place, with my mouth shut, never rising above my station. Because that’s what it’s about, isn’t it? A game of, “if you can’t communicate exactly how I like, then I deem you unacceptable”? This may not be how it actually is, but it is how it feels.

This challenge couldn’t be more great in relation to my work. I’m one of the very small percentage of Autistic adults who is employed. Most are not. Most struggle with it- having long periods of unemployment spotted with short attempts to be part of the workforce, or do their own thing. Because of this, the majority of autistic adults have to rely on the support of others. This is a source of anxiety and depression. The suicide rates in Autistic adults are the highest of any group. Here’s just one example of many: “Co-author and ARC Director Dr. Simon Baron-Cohen said, “Adults with Asperger’s syndrome often suffer with secondary depression due to social isolation, loneliness, social exclusion, lack of community services, underachievement, and unemployment.”

I’m currently feeling significantly beaten down and misunderstood. For you see, my best attempts to communicate are frequently met with criticism or harsh words written about me. Why do I have access to being able to see criticism written about me? Because my work is an online business, where customer-owner interaction is necessary and important. I’m expected to interact personally with customers on Facebook or social media. To not interact is seen as cold and distant. In trying to avoid social media, I found out I was perceived that way. So I started trying to reach out and connect, posting on Facebook to ask customers for their opinions on things, involve them in polls and feedback threads to show them I valued their opinions, and was eager to meet their needs. Sounds great right? Except it isn’t. It’s backfired. Again.

People don’t like how I communicate. My trying to be friendly, helpful and interact? It “rubs people the wrong way”. I feel at a great loss when even my best attempts to be “normal” are met with criticism, and people putting me down as if some disruptive character flaw is present. This causes me to feel a deep sort of psychic pain. Having it happen once or twice, I could handle that alright. But this is constant. It’s happened my entire life. It’s a bit easier now that I have an autism diagnosis which helps me to understand and put my differences into perspective. But it still hurts. I am “autistically out” in relation to my business because for me it’s important to be myself, and hopefully raise the standard for awareness and acceptance of the gifts/challenges that adult female Autistics face. I think the world would be a better place for Autistic people if neurotypical people could stop and reframe their perspective in relation to autistic people.

What do I mean by “reframe their perspective in relation to autistic people”? What I mean is for them to halt their thought process, which is undoubtedly careening towards critical thoughts about the autistic person’s presentation and attempts to communicate. From what I’ve been told and from what I’ve read, customers on my Facebook page are “rubbed the wrong way” by when I’ve posted polls or discussion threads asking for customer feedback about certain things. They feel I shouldn’t ask for customer opinion, I guess. Or they are fine with my asking, but they don’t like how I communicate. Insert me between that rock and that hard place, because I’m not asking customers to share their preferences because I’m an uncaring jerk. Or because I’m clueless and helpless and am trying to stir up drama. I ask customers to share their viewpoints and opinions because… I ACTUALLY CARE. I really, truly, beyond a shadow of a doubt want to provide products and services that match the needs/wants to the customer majority.

Personally, as an autistic person operating on a different neurological framework, I don’t see being autistically out any different than you voicing your preference for Apple or Android. Being autistically out doesn’t mean I want special treatment or sympathy. I simply want my differences to be viewed as being different- NOT LESS. You can criticize how I interact, but due to the fact that I am autistic and this presents in me as profound social and communication deficits, you are never going to get me to act like another company owner, who engages in a carefree, natural, spirited and flawless way. I’m not capable of it. That doesn’t mean that I am a bad person, or that my business is not worthy- although ultimately it is you who decides who you wish to spend your money with. And I understand that, I really do. What it really means that I am different. It means that social interaction is not one of my strengths, but if you look closely, you might see that I have strengths and unique gifts that another person does not. But if you’re too narrowly focused on the fact that I’m not an ebullient portrait of social appropriateness whose words flow onto Facebook like ambrosia from Mount Olympus? Then sadly, you will not see my strengths or my talents. You won’t see that I have something to offer, also.

My personal experience, my current quandary:

It’s very difficult for me, as an Autistic person trying to operate a small business in the indie makeup community. A dominant part of the attraction for customers purchasing indie makeup is that they get to interact with the company owners. They want to interact, for this represents a personalized aspect of shopping, and the rewarding feeling of supporting a small business with a real person attached to it- not a faceless or nameless corporate conglomerate. A determining factor in the online success of an indie cosmetic company is the online presence of the owner. Because I have difficulty communicating, I’ve had to at times, completely remove myself from the online equation- working only in the background. The result of this approach? The perception that my company is lacking an online presence and personality. That my company is cold and removed, or not friendly. That I am not personally involved, or “only in it for the money”. Obviously this approach does not work without the context of what is expected from an online indie makeup company. So, despite the challenge and stress that socially interacting causes, it is decided that it is really best that I try to “put myself back out there”. I do, and think I’m doing really well. Customers seem to really like interacting, and a lot of people comment on the posts I make on Facebook asking for their opinions. At least that’s what I think.

Turns out, as I describe above- my best attempts to communicate and interact are failures. If I don’t communicate, my company is cold and distant. If I do communicate, my very presence and interaction rubs people the wrong way. And I don’t mean just a casual feeling- I mean, my interaction rubs people so much the wrong way that they unfollow my page, or decide they don’t feel that they want to support my company. Then they go to online forums and write harsh and critical things about me- even despite knowing that I am autistic. My crime? Asking customers for their opinion too often. Asking customers how they feel about certain sales, or product sizes, or artwork on jars, or basically- things that I am unsure about and am eager to hear what customers think so that I can work on improving their experience. I do it from the heart, because I really care. And what happens? What happens is what usually happens. People either misinterpret my communications, or they judge them as being different. And different is not good. I’m then made all too painfully aware of the fact that I’m different, and different is not acceptable. Having been put in my place, I return back to my stool in the corner, put on my dunce cap, and face the wall. Apparently, that’s where I belong. At least until I bravely feel like I can again try to conquer this hurdle.

Ever wonder why Autistic adults struggle with depression and anxiety? Now you know just part of why that is. There’s much more, this is just a tiny glance into the frustration, stress and pain. Just imagine how confusing and difficult it is to navigate your life in this way. Constantly trying to fit in, and even thinking that you’re doing a great job- only to be slapped into submission and made to feel like you’re broken, inappropriate and perpetually wrong. That your voice doesn’t fit in. That you need to never come out of the shadows, instead having always, someone to represent you. Because, you know… you’re just not good enough.

And so I return to those shadows, with heavy heart. Like Icarus, I have flown too closely to the sun. I’ve been in a place I was never meant to be. The harsh light of the sun has melted the wax of my wings, my feathers disintegrating into a useless whirl of fluff and flutter. Sending me spiraling back down to my depths.

Do you think that’s fair? That the neurotypical world is such a harsh, sharp and cruel place, where Autistic people continually try to convene, but continually feel ostracized and cast out?

If you don’t think that’s fair, then consider learning more about autism and neurodiversity. Nick Walker of Neurocosmopolitanism presents an amazing definition of Autism. Autism awareness is a thing, but what is “awareness” when it is lacking acceptance? You’re the missing link between awareness and acceptance.

I leave you with a poem. One of my favorites from long ago. 

“Alone”

BY EDGAR ALLAN POE

From childhood’s hour I have not been
As others were—I have not seen
As others saw—I could not bring
My passions from a common spring—
From the same source I have not taken
My sorrow—I could not awaken
My heart to joy at the same tone—
And all I lov’d—I lov’d alone—
Then—in my childhood—in the dawn
Of a most stormy life—was drawn
From ev’ry depth of good and ill
The mystery which binds me still—
From the torrent, or the fountain—
From the red cliff of the mountain—
From the sun that ’round me roll’d
In its autumn tint of gold—
From the lightning in the sky
As it pass’d me flying by—
From the thunder, and the storm—
And the cloud that took the form
(When the rest of Heaven was blue)
Of a demon in my view—

North Carolina Hiking: Fowler Creek Trail/Ellicott Rock Wilderness 1/25/15 9.88 miles

We hiked today in the Nantahala National Forest/Ellicott Rock Wilderness, in North Carolina and South Carolina. The trail is the Fowler Creek Trail, also known as the Bad Creek Trail. At the fork, we opted to go left toward the Fork Mountain Trail (also known as the Sloan Bridge Trail) instead of taking the switchbacks down into the Chattooga River gorge. Reason? Because I’d already hiked that section of the trail on one of my futile attempts to find Ellicott Rock. I wasn’t in the mood to be reminded of the notorious rock on this particular day.

We started at the tiny little parking area off Bull Pen Road in North Carolina. The trail winds in and out of the two states. We passed over two creeks and started revisiting the trail we’d hiked a few weeks ago, here. At the 5 mile mark, we turned back around and hiked out the same way. As usual, my GPS didn’t read an even ten miles at completion. This always irks me, as I really like even numbers. Here’s the GPS of today’s hike.

I use Map my Fitness app on my iPhone to track my hikes. Even if there is no cellular signal, it will still track the hike via GPS. It is a drain on the battery though. I also have a Misfit Shine fitness tracker, but this only measures # of steps and pace- it does not track your location or produce any map results. It’s generally accurate, for today’s total activity reading 10.7 miles. It also tracks my sleep, and I believe using this has helped me to sleep better. Not sure how, but it has. I like both ways to track, as I enjoy data in all of it’s forms- be it graphs or maps.