Share your thoughts: Do you feel misunderstood? I’d like to hear what you think.

I was wondering if you, my Autistic friends, would like to share your thoughts with me about the concept of feeling “misunderstood”. I want to try my best to include the words (quotes) of some of my Autistic colleagues in the form of quotes to provide a supportive framework for another Autism Acceptance eyeshadow I am creating for my work, to benefit ASAN.

I am considering calling the new eyeshadow color either “misunderstood” or, “enigma”. I’ve come across many Autistic people who feel misunderstood. It seems to be a common theme. Also, the word enigma. It means ” a person or thing that is mysterious, puzzling, or difficult to understand.” I definitely think that Autistic adults fall into the category of enigma. Mostly, because neurotypical people don’t want to even try to understand us, or shift perspective.

Our autistic traits or mentioning we are autistic most often evokes a defensive response. It makes them uncomfortable, or even suspicious. People don’t seem to grasp that the autism spectrum is just that- a SPECTRUM, a range that is constantly shifting and changing. The Autistic child grows up to become an Autistic adult, so why do April’s “Autism Awareness” efforts seem to focus only on children and “finding a cure”? More often than not, we are deemed “not Autistic enough” in their eyes. I mean, I’m TYPING this. I must not be Autistic enough to matter, right?

My goals with the Autism Acceptance eyeshadows I’ve been doing for my work (Aromaleigh Cosmetics) are two-fold. To raise funds for various Autism acceptance organizations and to speak out, as myself being an Autistic woman, about Autism, acceptance, ableism, invisible disability and more. To educate, to inform, to question. To reach people who think Autism Speaks is a great choice, and steer them towards the overwhelming bulk of information that questions that very thing. To present options- in this case, this new eyeshadow will be raising funds for Autistic Self-Advocacy Network.

So I’d like to know what you think, and how you feel. Do you feel misunderstood? Do you feel that people see you as an enigma? What do you wish that people could understand about adult Autism or more specifically, adult female Autism? I’d like to gather together a few quotes or statements to use along the website page for this eyeshadow color.

If you’re asking, WHY EYESHADOW? Well, I am a cosmetics formulator. It is my work and my creative expression. Crafting cosmetics is one of the ways I interface with the world, so it is my artistic medium. I’ve been doing it for 16 years now and have the potential to reach a lot of customers with messages about Autism and why everyone should Boycott Autism Speaks. I personally as an autistically out person run into nonstop difficulties in relation to my Autism, in my work especially- with people reacting very strongly to my sharing this information, becoming defensive or even angry. Ableism and an overall misunderstanding of what Autism actually is- is rampant. These attitudes about Autism as I have encountered them, are frightening, inaccurate, and ableist. Shifting perspectives is difficult, but has to start somewhere.

You can see the past two colors I created, #Lovenotfear and Neurodivergent, HERE.

Quelling anxiety on a beautiful Spring day… while I question my being “out” about my Autism

My anxiety has been terrible lately. It’s been almost three years since I weaned myself off prescription medicines and made lifestyle changes to take control of my agita, but lately, I am starting to feel more and more paralyzed by those familiar feelings of weight on my chest, shortness of breath, clenched jaw, difficulty sleeping and often, waking in a cold sweat from fearful dreams… and an inability to concentrate.

Yes, I’m fully in the grips of anxiety and starting to wonder if I should start the frustrating and humiliating process of seeking out a doctor to begin prescribing my medicine again. You know that process… [insert long, rambling description of entire painful process from start to finish, here]. I’m sorry, but that doesn’t appeal to me.

I’m not anti-medication. I’ve spent most of my life, since the age of sixteen- on some sort of medication for anxiety, depression, PTSD, ADHD, or insomnia. The last three years have been the first time in my entire teen and adult life that I’ve actually been off every single prescription medication, other than hydrocortisone, which I have to take for adrenal insufficiency. It feels good and even empowering to be off all medications. I feel like I am finally myself again (whoever that is!), not disconnected from my thoughts, my spirit and my body. Medications always made me feel like my body and my mind were no longer interconnecting in an agreeable manner. They seemed to distract me from underlying issues, or just act as a band-aid to allow me to get through hard times and not feel the full force of the swirling vortex around me. I think I prefer to maintain an aware connection, though.

A friend suggested that I try L-Theanine to see if it helps my anxiety levels, so I ordered some yesterday. I’m eager to see if it has any effect, because I’d really like to take something natural. L-Theanine is a naturally occurring amino acid that has a chemical structure very similar to glutamate, a naturally occurring amino acid in the body that helps transmit nerve impulses in the brain. So I shall try the L-Theanine, and continue trying to be proactive in my work to make sure I don’t get overwhelmed and stretched too thin.

Work has been really hard on me lately. It’s gotten a lot busier (which is awesome), but due to a whole scourge of problems I’ve had each month with a software program I purchased to manage my customer’s monthly subscriptions, I’ve ended up tacking on about 40 extra hours of administration time to each month- handling the software, the signups, the failed payments, the emails and messages going out to customers to try to resolve confusion and payment issues, and the nonstop requirement for me to be online on social media- to handle all of the stuff happening in real time. It’s been killing me, pretty much. Yesterday, when this month’s payments and renewal orders were set to go through- almost all of them failed. I ended up having to make some difficult choices about the software, and try to quickly figure out what to do next.

My helper, who handles customer service for me, was at work at her real job all day… so it left me on my own. And it was in all honesty, an absolutely terrible day. But I managed to get through it without completely melting down thanks, in completion- to my ability to hyper focus. I put myself into a trance-like state for ten hours straight. I didn’t move from my chair to eat, or drink, or… anything. And I got the job done, but now I am dealing with the aftermath. I’m exhausted, shaky, and I feel like I’m on the edge of Autistic meltdown. No, not a temper tantrum. An Autistic meltdown is a neurological reaction to stress, which if not stopped, then manifests physically. My meltdowns begin with a tingly, electric feeling in my limbs, and the sensation that my nerves “hurt”.

I’ve been feeling this way since yesterday afternoon, and it didn’t go away with a night of sleep. So this morning I made the decision to shut my shop down on Sunday morning, for a few days. I made an announcement about it, but I feel like I can no longer be Autistically out in relation to my work. The mere mention that I’m on the Autism spectrum seems to send some people into an offended tizzy. This past week, there was a “safe space for negative reviews” on one of the indie cosmetic forums, and the comments people made attacking my personality were really painful to read. I welcome constructive criticism of my products, because then I can improve them. But I will never understand why people think it’s alright to make fun of the Autistic person who is sincerely trying their best. A few weeks ago, I thought I was happily helping a customer on Twitter- giving her a link to an eyeshadow primer she might want to try, and explaining the scientific basis for why certain products work better than others with certain eyeshadows. I thought it was a great interaction. I was so wrong. She wrote on the negative review thread that I was passive aggressive, snarky and unhappy. Then she posted that I never shared her blog reviews (even though I had shared one 5 days prior). I was flabbergasted. I thought she and I had a nice conversation. Her words really hurt me, because they confused me, and I felt like she was being unnecessarily cruel and dramatizing our exchange (which is public- right on my work Twitter!)

But, what transpired with her just served to remind me that I am not in an Autistic safe space when I am online. I continually question my decision to be ‘out” about being Autistic, because I was truly naive to think that people would be accepting of it, or even remotely want to understand more about adult Autism. They don’t. They see it as an excuse, something that makes them uncomfortable, and they feel like it is “TMI”. People think Autism is a mental illness. I can’t say to my customer base, “Hey everyone, I have to close the shop down because yesterday took it’s toll on me, and I’m very worried I’m going to have an Autistic meltdown”. It would be great if I could, but it would not be well-received. People would say I was making excuses, and holding myself to a low standard due to my Autism. If there are customers who are accepting of it, I don’t hear their voices. I wish I could. For the most part I hear the voices of people who refuse to see my disability and how it affects my life, because they don’t want to even slightly shift their perception. I have an invisible disability to them. They don’t live with me and see me on a daily basis, so they have no clue how much I struggle. I make a lot of accommodations for myself in my work, because it’s the only way I can function. I don’t see the special arrangements I make for my neurology any different than someone in a wheelchair needing a ramp leading into their house. I make virtual ramps for my neurology to be able to tolerate a day in the life. 

I long for acceptance, and feeling like I’m alright just the way I am. I am tired of being judged, made fun of, and consistently reminded that I’m broken and that some people think I shouldn’t be allowed to even speak for myself. I’m tired of it. I’m extremely tired of it, and it’s been building and building, for weeks. I am so sick of being made fun of. People say, “Haters gonna hate” but it isn’t really about haters. it’s about bigger concepts, such as ableism, and the constant struggles that adult autistics face on every single day of their lives.

Anyway, I’m completely fried, my nerves are tingling and buzzing, and I feel like I’m walking on a tightrope. So I went for a walk in the woods behind the house this morning, and captured some of the early morning sun in my garden, and on the first budding signs of Spring. And the expressions on the stop-motion images of my dogs? Priceless. C and I laughed so hard that it hurt, when we viewed those on my computer. I felt a little better after the walk and the laughter, but it’s not enough. I need a long and uninterrupted period of time in which I’m not being bombarded with sensory and environmental stimuli. I need to withdraw, which is what I told my customers this morning on my private Facebook group. I did not mention Autism. I am afraid to. I am afraid of being attacked and made fun of for what I am, for who I am. I just want to be myself. My silly, nail-biting, hair-twirling, quirky self… without fear of retribution. 

South Carolina Hiking: Fork Mountain Trail 3/15/15

Today was a glorious day, so we set off to hike Fork Mountain Trail. We hiked this trail back in December, and it was just as beautiful today as it was then, although spring has sprung and the forest has begun to show signs of verdant renewal…

We prefer not to hike on the weekends, so as to avoid traffic and the weekend trail rush… but after a few days of rain, we just couldn’t put it off another day. And I’m glad we didn’t- I love the change of seasons. It’s one of the things I really missed when I moved to the low country of South Carolina, where there’s really only two seasons. Six hours away in the most Northwest corner of SC, we most definitely do have four seasons. And I love that! Today it got up to 80 F, which is unseasonably warm. Actually, rather freakishly warm- this temperature should not occur until late April/Early May! My garden is happy, for now…

Today’s hike wasn’t long- just under 7 miles (GPS of hike), as I’ve been feeling rather under the weather and fighting off a sore throat for the last few days… I thought i had completely succumbed to being sick mid last week, but I couldn’t stay down for the count long- I sort of picked myself back up and glided through the rest of the week at half throttle, but really kind of wishing for a cozy bed, chicken soup and the box set of Downton Abbey that my neighbor kindly lent me.

On today’s hike, I found what I now believe to be a deer skull! I was meandering about, photographing tree trunks and moss, when I looked down and saw the skull. At first, I thought it was from a coyote with incredibly worn down teeth. Without the lower jaw, and with the front of the skull missing, there weren’t any canines. I could be wrong- what do you think? If it is a deer, it’s obviously from a doe. We brought it home and are going to disinfect it and C will display it with his other unique found objects. It will look smart next to the 4 foot long king snake skin… ;)

Foothills Trail Hiking: First hike in 30 days… Chattooga River never disappoints

I find it hard to believe, but I have not been hiking in over a month. February ended up being kind of crazy, in every possible sort of way. I had to admit to myself that February demanded for me to hunker down and tend to important things. So I did- which made yesterday’s hike even more enjoyable. It was also a gorgeous day, and we haven’t had too many of those recently!

I’ve hiked this section of the Foothills trail before, in several directions (from both Cheohee Road and from Burrell’s Ford Road and also from Big Bend Road). This time, we parked at the Burrell’s Ford campground and hiked in about 3.5 miles then back. A short hike by our standards, but we hadn’t been out in a month. I always like to look back at my old photos from hikes on the same trail- here’s the portions of the same segment last year on February 8th, then on February 16th and also on November 14th!

Here’s a link to the GPS map of our hike. We didn’t go down as far as Big Bend Falls, but we did hang out for a while on some massive boulders and eat oranges!

Strangely, I wasn’t really in the mood to capture images. I think it’s because I haven’t been out hiking in a while, so my mind was wandering. Hiking is a way for me to clear my mind of the usual constant simmering anxiety that runs through it. I have pretty severe anxiety, but don’t take medication for it. While I decided to try to handle my anxiety naturally with lifestyle changes, I realize this isn’t for everyone- it’s just what I’m personally trying to do at this point in my life. Things like hiking, gardening, knitting, coloring, researching my special interests… they’re all things that relieve anxiety for me.

I love seeing the world shift as we move from Winter into Spring. Bluebirds and Robins have been spotted. I have a whole bunch of hyacinths coming up in my garden, from bulbs I buried last year after Easter. The cow pasture I can see from my window is starting to get green, and I suspect we may soon have some calves appear. Last year’s first calf was born on May Day, and we named her Peaches, but we later found out she was a he, so he became Pierluigi. The trees are starting to bud, and the forest is bustling with quiet signs of life, a barely perceptible hum of delicate intensity. My window screen is covered in ladybugs, and hungry young deer ventured right up underneath my window this morning, to feast on greening cat’s paw which speckles my un-weed-controlled lawn.

I can’t wait for Spring to be sprung!

South Carolina is officially closed! Another rare snowfall has appeared…

I have to laugh at the extreme reaction to snow down here in the South, but that’s only because I grew up in Northeast Pennsylvania, where I spent my winters shoveling snow, ice skating, sledding and building igloos. I spent the first part of my adult years in one of America’s snowiest cities- Rochester, NY. This kind of light snowfall was a normal, daily event in Northern life. Down South, it closes schools and government offices, and clears off complete aisles of grocery stores. I understand, to a certain extent- we don’t have the infrastructure down here to manage inclement weather. Major highways are salted, but most roads will never be treated. There’s very few plow trucks. Everything gets shut down in the interest of safety.

The snowfall is beautiful, and offers a welcome change in the landscape, as winters are brown and drab here (unless of course I am hiking in a green Appalachian forest cove). We are supposed to get more snow through today and into tomorrow, possibly even the end of the week! Usually there is one brief snowfall per winter down here. And it melts within hours, so this is definitely a shift in weather. I’m personally hoping for a slightly cooler than normal summer… :)

What if? [REBLOG]

Sonnolenta:

If you read one blog post about Autism today, make it this one.

An incredible post from ischemgeek asks the eternal question… “What if?”

Originally posted on ischemgeek:

What if you were told that the way you experience the world is wrong? What if you were told your body lies? What if everything you felt and experienced was challenged, tested, doubted, disbelieved?

What if they told you the way you move is wrong? What if your body language and movement was monitored, policed, and controlled whenever you were around people? What if other people saw you slip up and laughed and made fun of you for it? What if they told you that you were a freak and freaks should die? What if they urged you to kill yourself? What if they hurt you? What if authority figures insisted this treatment was your fault and if you tried harder at moving right it wouldn’t happen?

What if they told you the way you talk and think and write is wrong? What if they dictated and micromanaged to you…

View original 681 more words

Why aren’t we allowed to learn from our mistakes, change our lives, improve ourselves and move on?

I’m frustrated and disheartened lately, because no matter how much I’ve owned up to past mistakes I’ve made, learned from them, changed my life to prevent myself from being in toxic/stressful situations, and moved on… there’s people out there who refuse to let me move on. And they express their derision with harsh words, fully intended to harm me and my livelihood.

Five to seven years ago, I had hit rock bottom. I was severely depressed, in an abusive marriage, reeling from my Father’s suicide, caught up in unhealthy family dynamics that resulted from it, and struggling to run a business that I had grown too big, too fast. I wasn’t eating, and my weight was down to 112 pounds and wearing a size 0 (I am 5’7″). I wasn’t sleeping, and my Doctor prescribed me strong medications to knock me out each night. I felt hopeless, and that I had nothing to live for, and nothing to lose. Every day I fought with suicidal ideation, or wanting to pack my Son and our belongings into the car, and drive as far away as we could possibly drive.

As a result of everything going on in my life, I made some mistakes while running my business. One customer/blogger, in particular, I completely lost it on after she left me a negative review even though I had personally assisted her and gone out of my way to help her. This was five years ago. I reacted impulsively, when I should have closed the laptop and done something proactive instead. I was very rude to her, and acted out of character and out of line. Afterwards, I felt deeply ashamed- because I knew in my heart that my anger was misdirected. The person I was most angry at was myself. For a long list of reasons, I was angry, and I felt trapped and unable to change the situation I was in.

I wanted to apologize to her, but I felt that it wouldn’t matter. The damage was already done. A close friend assured me that I could apologize, and that I should apologize. So I did. I sincerely apologized, with no excuses. She accepted my apology, and I felt much relieved. Five years (yes, five years!) have passed since that very dark time in my life, and I find it hard to believe that people are still rubbing my face in what happened with that customer, and using it to try to harm my reputation in my work- a reputation that I have worked extremely hard at repairing over the last five years. Over half a million people have viewed the blog post she wrote, in which I was very rude to her in the comments. The aftermath of my mistakes, and how I wrongly treated her have deeply impacted me, and I have learned from the mistakes I made that night a million times over. So why are people still using this against me?

At what point can we let people move on? It’s one thing if people are exhibiting the same behavior, making the same mistakes, and not doing anything to try to better their situation- people like this are not getting it. They aren’t learning from their mishaps. They aren’t owning up to the fact that they need to change. In contrast, I DID own up to my mistakes. I apologized, and took a long step back from social media. I filed for divorce, closed my business, and withdrew from any and all contact with the online community. I looked inward, long and hard at myself and the environment I was in, the situations that surrounded me, the feelings and emotions that triggered my anxiety, my depression, my despair, and my sensory issues. I faithfully attended therapy, worked hard at the exercises my therapist gave me each week, and read as much as I could of the books she recommended. I was voracious for knowledge, change and improvement. I lived an extremely quiet life for many years after that. And I still do live an extremely quiet life. Five years have passed since then, and I want nothing more than a quiet, peaceful life.

During that quiet time of deep introspection, I received my autism spectrum diagnosis. (“Oh, there she goes dropping the “A” word again, it must be some sort of excuse!” Please don’t go there, just don’t. It’s clearly not an excuse.) This allowed me to even more carefully look at my life and make the best possible decisions for me to not only learn from past situations, but to take preventative measures to change my life to be better suited to my neurology. I’ve never been a person to rest on her laurels- I am always pushing myself to improve whatever I can about my life, work, situation, environment- in any way I can. Autism is not an excuse, it is a reason. It is a reason for doing things a certain way- a way that is respectful and considerate of my neurological differences. It is a reason for looking back to the past so that I can learn from my mistakes and become a better person. Before my Autism diagnosis, I just thought I was a broken, hopeless person who couldn’t handle anything and who always had trouble with each and every day. I didn’t understand how or why things affected me, and I kept putting myself right back into the same disastrous situations. Out of the frying pan and into the fire I went, over and over again.

But not anymore.

In the past five years, I’ve turned my life upside down and shaken it so hard that just about everything fell out of it. I then picked up the broken pieces of my life and put them back together- carefully, methodically and with great thought- and always with an eye towards improvement and betterment. I’m not perfect, and there are times when I still buckle under the pressure due to uncontrollable outside forces, and life happening to fast, too loud and too sharply. There are times when I might write a store announcement that’s too wordy, or repetitive- but it’s just that- a wordy store announcement. It’s not a character flaw. I’m not hurting anyone, I’m not being rude, or disrespectful, or anything negative. (yet honestly- people will use my occasional wordy announcement as a reason to badmouth me, and make fun of my Autism, I kid you not!) Life constantly throws curveballs, and sometimes I have a bit of help in catching them, while other times I am completely on my own. But at least I now understand why these things affect me so deeply. At least I now understand that to a certain extent, I can control the environment I am in. I can make sure I properly care for myself, so that in the face of stress, I am well-rested, well-nourished, and well aware of the dynamics that could trigger a stress response or autistic meltdown.

Although I still deal with anxiety on a daily basis, I am no longer depressed. Depression is something I have fought with on and off since my early teens. It’s been this constant spectre, shadowing me as I moved through life. It may or may not be a coincidence, but my depression lifted within two years of my Autism diagnosis, and the subsequent chain even of monumental life changes that I began making shortly thereafter. Depression is insidious, because you don’t realize how much it is affecting you, and your thought processes. You don’t realize how much it has changed you from your core. You only realize this when you’ve been lifted out of the depressive state, and you’re left hoping that it never happens again. I am most grateful for being depression-free right now, because it has given me the clarity and the insight to truly be able to learn from my past mistakes, regardless of the circumstances under which they occurred. It has thankfully, allowed me to see the past tumultuous decade of my life through a different lens… because I am determined to not repeat my past circumstances.

There are people out there who think I use Autism as an excuse. Specifically, that I use Autism as an excuse to not do better in my life or business. That I don’t push myself to be a better person or run a better business because Autism is some sort of “get out of jail free card” and to this stance I call complete and utter bullshit. Those of you writing this gossip-laden trash about me on the internet don’t know me in person. You don’t know who I am, or what the last five years of life have been like. People can change, and they do change. Obviously you haven’t changed, as five long years have passed and you’re still writing rude and belittling things about someone you’ve never even met in person. Here’s what I’d like to tell you… People are capable of incredible feats of introspective growth, and I refuse to sit back and not speak up for myself here on my own blog space. I’ve done nothing but work towards becoming a better person, a better Mother, a better teacher, a better business owner, a better… well, a better everything. And I still have a long way to go, because that’s  just how I roll. I am constantly and persistently trying to think of ways to improve. This blog is a testament to that. This blog is about my journey. And if after reading this you still think I’m using Autism as an excuse, then you’re not looking closely enough, because it’s all right there in black, green and white.

No one is perfect. Everyone makes mistakes. Some people fall, some people crash and burn. It’s not about the fall, crash or burn. It’s about how people handle it when they stand back up, dust themselves off, and move on… it’s about learning, growing, and perpetually reaching for more. That’s what life is about to me.