Primavera! – (Autism, “Forest Bathing” and being close to nature)

Since being diagnosed on the Autism Spectrum back in 2011, I’ve become very aware of what type of situations aggravate or diminish my overall experiences. As an autistic woman who also has sensory processing issues ADHD, anxiety and insomnia, these comorbid conditions can all be easily intensified by the environment which I am in.

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I’ve noticed that I’ve been slowly gravitating towards being as close to nature as possible, and the reason is simple: it’s how I feel my best! It started off with walks on a greenway near our house, then hikes at local state parks. Next thing I knew, I had a full-blown container garden in the backyard, and my Son and I were driving around South Carolina, North Carolina and Georgia- taking in the gorgeous scenery and outdoors. Last year at this time, I lived in a very populated suburban area. Now? I live in a very rural area of Oconee County, SC. There’s a large pasture with cows in it to my right, and hundreds of acres of forest to my left and behind me. I wander in this forest, almost every day. 

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I follow mostly game trails, which I’ve marked with neon orange fabric ties so that I can easily find my way to an old logging roadbed. Spring is my favorite time of year. Every day the world tells a different story, teetering on the edge of vibrancy. The buds and leaflets on the trees are saturated with warm colors that I won’t see again until they start to turn color in the Autumn. Flowers are everywhere, and the flowering trees are my favorite. The first trees to blossom are the Bradford Pears. Then Cherry and Dogwood. And Carolina Jessamine vines climb the trees, reaching far up into the canopy amongst the violet wisteria vines that drip with gorgeous, fragrant flowers. Everything is more vivid, more alive, and teeming with more possibility than at any other time of year.

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Spring is a time of “dormiveglia” for nature, that delicate veil of sleep peeling back, as the waking world comes into focus and Summer appears just as quickly as it departed the year before. Being in nature is an important part of my management of my autism and comorbid conditions. I do not attend therapy. With my health insurance and finances, it isn’t an option that is available to me. I weaned myself off Adderall, Klonipin, Ambien and Wellbutrin several years ago, choosing to manage my comorbid conditions with organic eating, exercise, sleep, natural remedies, and a heaping dose of self-care and self-respect. While it is not perfect, it works for me.

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I spend as much time outdoors as possible. I walk, hike, paddle board, garden, play with my pups, do yard work, and just sit out on the back porch- whether I’m enjoying a cup of coffee, reading the news, blogging, or editing photos- I try to do it in the fresh outdoor air. I wasn’t able to enjoy doing this when I lived in a populated area- my sensory issues made it too difficult. So I am incredibly grateful that I have been able to rework my life circumstances to a simpler, more rustic and minimalist experience. When I feel overwhelm, anxiety, or extremes of emotion, removing myself from the situation and spending time in the forest truly decreases whatever negative symptoms I am feeling. “Forest Bathing” couldn’t be a more accurate term, because this is what I do. I wash my senses clean with the beauty of the forest. The Japanese refer to this as “shinrin-yoku”, which translates into just that- “forest bathing”. For me, it is an essential psychic cleansing that I need as much as I crave.

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I take tons of photos on my excursions. I’d say it’s in my blood, but the truth is, I majored in advertising photography in college. It was a very strict program, and I was always hauling around a lot of very complicated, technical camera equipment. I take most of my photos with my iPhone, or a little waterproof “PHD” camera that I have. PHD stands for “push here dummy”- kind of a dumb joke that was circulating in college, a silly name for automatic cameras where you just have to “push the button”. I like using a camera like this when I hike. It allows me to see the tiny details, the fragile beauty, the delicately hidden things that I otherwise might miss if I were fussing about with a lens or camera setting.

I like to use the Hipstamatic app for photography, often. It reminds me a lot of the plastic cameras we would use in photo school, to try to create cool “artistic” effects. So without further blithering from me, here are some photos from yesterday’s walk. These are all in Walhalla, SC- along Coneross Creek, near the Cherokee Foothills Scenic Highway. It crosses under a bridge at one point, which is complete covered underneath by vines, and home to many bats.

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Body image, disordered eating and dysmorphia- an autistic woman’s experience and views

(Trigger warning: disordered eating, mention of suicide)

I’ve had body image issues, dysmorphia and disordered eating for as long as I can remember. Whether I was nitpicking over my food as a child, starving/binging as a teen, or carefully calculating the caloric content of every single bite of food I looked at, food has always been a struggle for me. My weight/body has always been a source of anger and frustration. And confusion. As an autistic person who has spent a great deal of time observing the behaviors of others in hopes that I could act like a normal person and thus, pass for a normal person- of course I noticed other people’s bodies and what they consumed. Since I was usually watching other girls, as you can imagine, I was constantly seeing other girls in contrast and comparison to myself.

But it started off long before I was really much aware of things like height, weight and body type. I was an insanely picky eater as a child. It’s pretty well established that children on the spectrum have disordered eating. A Google search for “autism eating disorder” brings up results with the following subtext: “Mealtime and children on the Autism Spectrum: Beyond Picky”, “Picky eating in children with Autism and how to treat it”, For kids with Autism, food can be a fight”, “Anorexia and Autism- are they related?”, “Do girls with Anorexia Nervosa have elevated autistic traits?” and so on. And on and on and on.

As a child, I refused to eat anything that I couldn’t see large/obvious bits and pieces of. This made salads, casseroles and most soups other than chicken noodle off limits. I was usually forced to eat my food, and would have to sit at the table alone, for long after dinner had ended. I remember those long stints at the table, trying to figure out how to hide my food. Wishing we had a dog. I’d often hide my food under the antique kitchen table, on a little wood ledge that my hands could easily reach. Or behind the curtain on the windowsill. But at anyone else’s house I was out of luck. I had to sit there and force-feed myself, as I gagged and fought back the tears. Some of the foods that set me off? Anything with mayonnaise/sauces, tiny bits of vegetables, onions in any form (I still believe that crunching an onion is like crunching a bug), meat on the bone, cheese on pizza, salad dressing, little green bits in anything, any food with chunks such as chunky tomato sauce or salsa, any dairy products with clumps. My Grandmother loved to make potato salads, slaws, deviled eggs, casseroles, jello salads and other food amalgamations. My Mother loved to make shepherd’s pies, stuffed cabbage, meatloaf, corn chowder, stromboli, pierogies, and veggies with cheese sauces. I really wanted my food to be smooth and homogenous, with no surprises. My favorite foods were usually things that were all one color and texture. Such as pudding, mashed potatoes, pasta, bread, and sweets. Any type of sweets. As a rule, I hated any type of vegetable. It was just too scary. I liked many fruits, but everyone seemed obsessed with me eating my green things.

As I grew into a teenager, I became aware of the fact that my body was changing. This was difficult for me in all of the ways that it must be for all girls, but especially more so with my sensory issues and inclination towards disordered eating. At just 13 years of age, I felt that I was “fat” and would put my walkman on and walk laps around the neighborhood. I realized at this age that my Mother was constantly dieting and denying herself food, and disparaging her body. I watched her drink SlimFast shakes, cook little foil packets of white fish with lemon, and eat faux crab sticks with lemon. And lots of grapefruit, celery sticks, and plain lettuce. My Mother hated her body and thought she was fat, and so did I. I hated my body and thought I was fat. I didn’t know how to be any other way. While other girls my age, were willowy, elegant and maybe even graceful, I was solid, muscular, and substantial. I wasn’t fat. I just wasn’t a lithe and gamine girl with a perky ponytail and flowing skirts. I was what I was, and I was painfully aware that I was different, in just about every way.

My disordered teen eating soon developed into bouts of anorexic behavior followed by binging and purging. While I never developed either chronic anorexia or bulimia, I spent weeks at a time eating only a salad a day, then weeks eating every single thing I saw. I purged through vomiting, but mostly through excessive exercise. The irony of it all is that I was never a thin teen. I was usually on the chubby side of heavy normal. And by the time I was 16, I had two suicide attempts and a psychiatric hospitalization under my belt, and was being fed a variety of antidepressants, which only made me gain even more weight. I fought back at the weight gain with more disordered eating, and more exercise. I walked, hiked, did aerobics, lifted little hand weights, and would do hundreds of situps a day. But I was always overweight, and it only added to the social anxiety and awkwardness that I felt. It was more than difficult for me to eat healthy foods, because they were usually all green, with little bits of crunchy things, and cut into a small and mysterious size which denied their identity. I wouldn’t even allow lettuce and tomato on a sandwich.

Body image and disordered eating takes on a whole new life of it’s own when an autistic child grows up into an autistic adult, and relationships emerge as a possibility. One of the inanely stupid things said to me by an allistic person was this gem: “You can’t be autistic. You’ve had relationships! You were married!” Yes, it’s true. I’ve had relationships. I was even engaged once, and married twice. But please keep in mind that I’m sitting here writing this in plaid pajamas and nerd glasses, with two dogs curled up at my feet, and my hair wrapped up in a babushka. I’m not married at this time, and since being diagnosed, I’ve pretty much decided that I really could care less about relationships and only forced myself into them because I thought that I was supposed to. All of my relationships have been as far removed from contentedness as one could possibly get. My relationships have all been so unhealthy and so anxiety-stricken that in each one, I completely lost my appetite and moved into an anorexic state, losing tons of weight as a side effect. In my last relationship/marriage, I lost so much weight that people were actually concerned. I’m 5’7, but I was so thin, I could buy t shirts and cargo pants in the girl’s department. But I truly had no idea I was as thin as I was, because when I look in the mirror, I always see the same thing. When I look down at my body while standing, I always see the same body, I don’t see weight gain or weight loss. This is body dysmorphia.

This body dysmorphia also translates into not being aware of what I look like in terms of attractiveness. I honestly cannot tell you if I am pretty, or average, or simply not attractive. All I can remember of this in my teen years is my Mother telling me to look at other people, especially boys, whom she claimed were looking at me. But I kept my gaze to the ground, as I always did, and as I still do. Eye contact has never been my thing. I’d imagine that autistic women probably take a lot of “selfies” with their smartphones and computers. We don’t know what we look like, or where we fit in. And the “selfie” isn’t a narcissistic activity when we do it. It’s a moment in time, through which we fumble for our visual identity in a world of harshly standardized physical ideals. Sometimes we might even think, “I AM pretty” or “I DO have nice eyes/pretty smile/smooth skin” or even, “I look NORMAL!”. I’ve been taking self portraits of myself for as long as I had a camera. I ended up being a photography major in college, so as you can imagine, I was not the only student taking self portraits. It was actually a respected “thing” in photo school, unlike now, where the taking of selfies is seen as tantamount to online attention whoring.

As I write this, I’m still struggling. After spending about ten years in a thin/fit state, where all of my clothes fit me, and I actually had fun picking out what I wanted to wear each day… I’m stricken with what I call “black yoga pants hell”. In short, the only thing that fits me right now are all of the black yoga pants and stretchy athletic pants in my bottom dresser drawer. The irony of this is that since my autism diagnosis, I’ve actually become an extremely healthy eater. I’ve overcome many of my food issues and disordered eating. I’ve been regularly exercising, sleeping and reduced my anxiety levels without pharmaceutical assistance of any type. For all practical purposes, I am the healthiest I’ve ever been in my life. I am also the heaviest. I’m as heavy right now as when I was 32 weeks pregnant. Only there is no baby! For the last year or so, as I watched my body pack on pounds, I’ve been saying to myself, “There is something physically wrong with me. Really, physically wrong.” And I was right. There are a bunch of things that are physically wrong with me. If there’s one thing an autistic woman with finely-tuned senses can attest to, it’s being hyperaware of their own bodies.

A lifetime of chronic anxiety, depression and sleep issues has wreaked havoc on my endocrine system. I have low thyroid, low cortisol, low DHEA, low progesterone, and am waiting on some tests to determine if I have food allergies, sensitivities and absorption issues. I have chronic back pain and inflammation, and have been diagnosed with Fibromyalgia and Chronic Fatigue Syndrome in the past. Sadly, the treatment for this was, “Here, take this antidepressant”. I’m fighting with my body, and I know that a lot of other autistic women are in this same position. For whatever reason, perhaps sheer exhaustion, our bodies eventually buckle under the pressures that stress, anxiety, and life-long attempts to fit into the “normal world” bring. For the time being, I’m trying to gently nurture my body back to health, without pushing the limits too far. I had been doing a lot of hiking, but my recent move completely exhausted me, and now I have trouble getting up a flight of stairs, much less a mountain ridge.

I unpacked boxes of clothes this past weekend and hung them neatly in my closet. 98% of the items don’t fit me right now. It’s a myth that autistic women don’t like clothes, or fashion, for that matter. I most certainly do, but it’s got to be comfortable! It makes me sad that I’m having all of these health issues and that I feel so down on my body right now. In truth, I don’t want to be thin because of how it looks. I want to lose weight because I want to be healthy and strong. I want to be able to keep up with my Son. I want my body to be able to do everything it needs to do without being out of breath or hurting. I want to be able to get dressed in the morning and not be overwhelmed with discomfort, cutting waistbands, and restrictions. I want to be at the healthiest weight and body composition to live as long as I can, and hopefully evade chronic and lifestyle illnesses. I’m frightened of getting cancer or some other serious illness. Who will take care of my Son? Who will help me if I need surgery, or chemo? There’s only so much you can rely on a casual or work acquaintance for. Like most autistic women, I am socially isolated and lack a support system. I have to be at my physical best.

There’s a certain point at which body image issues fall to the wayside, and health concerns/issues dominate. I’m at that point. I like to think that I’ve safely cushioned myself in this cocoon for a while now, but I’m ready to break free. No matter what I actually look like, the most important thing is my health. And I will fight to get mine back. I need to unlearn a lifetime of unhealthy body image, unfair comparisons and disordered eating. I need to pay attention to what my body needs. Which brings me to another bizarre myth about autistic people- that we don’t care about what we look like. Or that it might seem strange that we wear makeup, color our hair, or wear interesting/fashionable clothing. When someone said to me once, “But you don’t look autistic”, I’m not quite sure what they meant, but I know it was based on a gross assumption. I’ll write about THAT in a future post. I’ve had a rough few weeks, and felt unable to emote, but I think I’m breaking through that. And once “Autism Awareness” month is no longer sapping my soul, I’ll be golden!

 

Stuck. Words and voices spiral. Names and faces misplaced. This is me.

I’m stuck lately.

All of April’s Autism acceptance awareness stuff has completely overwhelmed me. I can’t even begin to sift through the onslaught of information, posts, blogs, articles and activism. I feel terrible about this, because I feel like I should be involved. Writing. Speaking out. Sharing. And I can’t. My brain is not processing that information, and trying to force it is only making it worse. I have no idea how so many of you are able to handle this with such grace and high levels of cohesive thought. I feel like a puddle of lost words and misdirected thoughts. I feel like a partially formed shadow that is timidly following your lead, barely there.

I am having trouble with words, conversations and thought.

My senses are heightened past their usual extreme acuity.

I’ve made new online friends and I can’t keep track of their names and profiles.

For the last few weeks, I haven’t done #FF on Twitter, because all I see is a swirl of names, repeating over and over again.

I haven’t been sleeping well, and I feel like I need sleep more than anything.

I’m not depressed, don’t even go there.

My brain is tired. It’s exhausted, actually. Emotionally exhausted.

I don’t want to communicate, whether it’s by twitter, email, text or a status update.

I still feel bursts of creativity, I just don’t want to talk about it really.

My anxiety is off the charts, as it always is when I am emotionally shot.

I only have “enough” to give to my Son, myself, our dogs. I can’t be there for anyone else, help anyone else, or emotionally support anyone else right now. I’m fried. Completely.

There’s a bunch of new comments here on my blog, but I just feel pressure in my head. My brain hurts. Words hurt to look at. I’m only writing this because I feel like I have to offer up some sort of explanation. I’m having a hard time being able to respond to the comments.

I’m reserving my energy lately. #priorities. I can’t allow my energy to drain away like this. My Son needs it, I need it, the world in which I independently function needs it to maintain the status quo I have carefully fashioned.

I haven’t been able to read, listen to audiobooks or music, or tolerate environmental noises this week. My sensory issues are off the charts in regards to sounds and lights. I’ve spent more time this week wearing my noise-canceling headphones than I have in years. Yesterday was cloudy and I walked around in sunglasses most of the day. Everything is hurting my brain.

I am actually really astounded by the sociability and communicativeness of the many new autistic friends I’ve made on Facebook. So many words and conversations and verbal energy- how do they do it? I feel like I cannot. I don’t know how. I can’t follow the threads, there’s too much. I again feel like I am wandering through a room crowded with people, with words, phrases and sentences coming off of them like shrapnel that I need to dodge. I want to stand in their circles, but I don’t know how. I can’t even follow their conversations, so how could I stand next to them? I wander aimlessly from one cluster of people to the next, but in the end, just go stand quietly in a corner and start talking to a plant.

I get along fine in this world provided that I strictly limit my contact with other people. Most of the time, I do great with my Son and maybe seeing 1-2 other people in a day, with just brief interaction. Only what is necessary. Nothing more. Nothing emotionally demanding. The rest I just cannot handle, and this is why I’ve spent most of this week walking in the forest, planting seeds in my garden, and sitting on the porch listening to the birds. Nature asks so little of me. She only asks that I sit and enjoy her company. She brings the wind and the rain and the bright sun, but she tempers my senses with clouds, and night, and gentle breezes.

 

 

Why I created “NEURODIVERGENT” eyeshadow to benefit Autism Women’s Network!

I was diagnosed on the Autism Spectrum in 2011. It was a moment of absolute clarity for me. The sense of relief that washed over me was as comforting as a warm blanket, fresh from the clothes dryer. It seemed as if I was poised to put a lifetime of constant confusion, stress and misunderstanding behind me. But within a few days, my feelings of elation gave way to anger and frustration. I have probably asked myself a million times in the last three years, “How did no one recognize that I was autistic? How did I fall under the radar?”

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That is a question that many autistic women, just like me, ask. And that is why I created this eyeshadow color to benefit Autism Women’s Network. (Available 4/1- PURCHASE LINK –> HERE) It took me a few years to garner the courage to speak publicly about being autistic. I created this blog, Sonnolenta, in 2011, shortly after my diagnosis. But then I disappeared back into myself. I didn’t talk about it much, with anyone. I focused on healing, and working to positively change my life. How to make my neurology more compatible with that life. How to live my autistic life to it’s fullest.  In January of 2014, I was inspired to finally speak my truth. And I started blogging about my experiences as a late-diagnosed Autistic woman, here. I began to work my way into the online Autism community and I was amazed by the beauty, love, care and accepting qualities of just about everyone I had met. I meet new people every day and I am still amazed at the outpouring of love and support that is expressed in this community. I knew early on that I wanted to be a part of it, and assist in increasing autism acceptance and neurodiversity, in my own unique way. On February 14th, I “came out of the Autism closet”, here, and formulated #lovenotfear eyeshadow to benefit the Golden Hat Foundation. Almost 70 jars of the color have sold, and almost $200 raised to donate! This makes me ecstatic!

But the past six weeks have also made me sad. Mostly because the more Autistic women I connect with online, the more I learn that we have a lot of the same shared experiences, even though we are all very different. Some of the most common experiences are the negative, hurtful and traumatic ones, of which I have experienced every single one.

• Almost every single Autistic woman I converse with has been bullied, abused or raped.

• Almost every single one was not diagnosed as a child, but later in life.

• Family problems are common- with many of us either currently in toxic family dynamics, cast out by our families, or making the decision on our own to go “no contact” to regain our confidence and sense of sanity.

• Almost every Autistic woman whose experience I learn about has had great difficulties in relationships, friendships, marriage, school/college or work/career. Mostly all of us feel socially isolated in some way, usually dependent on the level of social and familiar support we have.

• Mostly all of us suffer from comorbid psychiatric conditions, such as depression, anxiety, insomnia, obsessive compulsive disorder, bipolar disorder, and others.

The similarities of experience shared by Autistic women horrifies me. There is something horribly wrong with the diagnostic criteria, the understanding of autism in women, and the overall concept of neurodiversity.

I have been inspired to become an activist for Autistic girls, women, and those who identify as female– because this all has to change. It can’t go on like this. I have become acquainted with women ranging in age from 20-70 in the online autism community, and it breaks my heart that we share such similar negative experiences in life. I truly believe that a change in how autism is diagnosed in young girls is the obvious place to start, but we also need to work towards recognizing adult autistic women (please note that when I say “autistic women” I am including also those who identify as women!). For the most part, adult autistic women are invisible. Organizations such as Autism Speaks don’t even recognize adult autistics. There is definitely a movement towards more adult women being diagnosed, but it has a long way to go. There is so much ignorance and misunderstanding about Autism in this world, and stereotypes abound.

What is neurodiversity? Neurodiversity is an approach to learning and disability which suggests that diverse neurological conditions appear as a result of normal variations in the human genome. Autism and ADHD are two of the neurological conditions most closely associated with the concept of neurodiversity. Here’s some additional information about Neurodiversity, from the Autism Acceptance Month website: “The neurodiversity movement celebrates and embraces all kinds of minds. The neurodiversity movement recognizes that there is not just one right way to think and perceive the world. The neurodiversity movement works toward a world where people’s brain differences (ADHD, autism, learning disabilities, intellectual disabilities, cognitive disabilities, et cetera) are seen as valuable differences rather than as things to be fixed. Proponents of neurodiversity want to make it easier for people of all neurotypes to contribute to the world as they are, rather than forcing them to attempt to appear or think more typically.”

The concept of Neurodiversity is very powerful, because it challenges the notion that there is only one “normal”. Autistic people have always been told that they needed to “fit in”, or to receive therapies in order to better normalize, etc… this is not only an affront to the autistic person, but it is insulting and degrading to be told that you’re not normal, and that you should strive to be normal! I don’t want to be normal. I don’t want a cure. I don’t want to not be autistic. What I do want is acceptance and understanding. I would like to be able to openly say that I am autistic, to people that I meet, without them throwing out stereotypes, such as “You don’t look autistic”, “But you work”, “But you can drive a car”, or “But you seem normal”. Most people don’t realize just how offensive statements such as this are, simply because they have not been educated otherwise. The neurodiversity concept hopes to change that, and so much more.

In formulating an eyeshadow color called “Neurodivergent”, I wanted to create a very complex and beautiful color that could also be worn by women of different coloring. I chose a mauve/taupe base with a greenish/teal highlight tone, because these colors are neither very warm nor very cool- they are more neutral and can lean in either direction. While the #lovenotfear color that I designed was very muted and geared towards even autistic women who don’t wear makeup or barely wear makeup, this shade departs into more daring territory- it is deeper toned and more dramatic. I like to think that it reflects the intensity of the autistic experience!

I chose the name Neurodivergent obviously, due to Neurodiversity. But also, specifically to Women Autism Network’s DIVERgent project, which I don’t know very much about, as AWN’s website is currently being redesigned, but I love this mission statement: “DIVERgent works to change how disabled women are commonly perceived within society by dispelling myths and stereotypes. A new initiative of the Autism Women’s Network, DIVERgent is run exclusively by disabled women of varying identities and impairments.”

I also purposefully went with the name NEURODIVERGENT instead of just, “Neurodiversity”, because I went to see the Divergent movie this weekend with my Son. In the movie, the main character is “divergent”. A small percentage of the fictional society depicted in the movie has a unique neurology, and completely different brain function than the rest of the society, which neatly fits into predetermined groups. In the movie, “Divergents” are feared, hunted down, and exterminated because of their unique differences from the rest of society. They have unique ways of thinking and problem solving, which form the basis of the protagonist’s actions in the movie (I won’t say any more, because Spoilers!). As I drove home from the movie, I couldn’t help but see the parallels between the movie and our own society, particularly autistic people! It’s been well-established that autistic people are neurologically different. That we “run on different operating systems” or that our brains are wired differently. Our disabilities are often tempered with unique skills and abilities that others don’t have. We have unique perspectives and ways of seeing the world. We march to the beat of a different drummer. But at the same time, we are often feared. It may seem trite or kitschy to make this connection between the neurodiversity concept and this movie, but I prefer to see it as an opportunity to educate. It is the most popular movie in the USA as of my writing this. My Facebook feed is full of Divergent news. I am infinitely curious about how popular culture reflects on society, and I am constantly thinking about things such as this.

You can purchase NEURODIVERGENT here. It will be $7 for full size and $1 for samples. 50% of the sales of it will go towards Autism Women’s Network. I am so pleased to be able to support my community in this way, because I am unable to participate in a lot of the fundraising events, which are typically Autism Walks. I feel that I am in a unique position to put my passion for color, along with my unique autistic talents and perspective, to good us and benefitting to the greater good of the autism community.

 

 

Discarded by my own Mother, I ask myself: “Where is that place where Autism and Feminism meet?”

I haven’t seen or spoken with my Mother since January 6, 2012. Her last sentence to me was “Get the hell out of my house”. I reached out for my Son’s chubby little hand, and I walked out of her front door, while fighting back the tears and feeling the prickly, all-consuming heat rise in me. I never looked back.

[Trigger warnings: psychological abuse, mention of suicide.]

In the two years since then, I’ve wondered over and over again- could I ever get my Mother to understand me, to accept me, and to love me? I had tried for so long. Then I had a child and I tried to get her to love and accept him. I knew I would never be the daughter that she wanted me to be. Those feelings began in my childhood, intensified in my teens, and remained constant in my adult years. I didn’t understand my Mother. Why was she so selfish? Why was she so self-righteous? Why was she so mean-spirited? Why was she so trivial? Why? And she didn’t understand me. Not even after I was diagnosed on the autism spectrum at 41. I had hoped that it was an epiphany which would provide closure for the mystery that was me, but she brushed it off, like it was a coat that wasn’t one of her preferred designers. I think she liked to see me as some sort of weak and pathetic reject that she could manipulate, denigrate and obfuscate to make herself feel more powerful and in control. For her to have learned about autism, and how it related to her daughter would have been too trying for her. It was easier for her to see me as flawed and broken. And THAT is the problem. Autistic women are not flawed and broken. We do not need to be fixed! But me? I couldn’t stay. I moved away. I didn’t leave a forwarding address. I had to go no-contact. The toxic ingredients of my family were tearing me apart.

Do you know what makes me feel deep melancholy? The fact that there are more autistic women out there in the world who have been thrown away like trash, by their families. Because that is what my Mother did to me- no matter how you try to dress it up or try to sugar-coat it. She threw me out in the trash. And my Son, too. I was nothing more than unsightly garbage to her. She could not place me into her perfect little world, in her spotless, showroom-ready house, with her designer clothes, her dinner parties, her expensive little pure breed dogs, and her unrelenting concept of who I had to be in order to be her daughter. My Father couldn’t fit into her life either, and I know how hard he tried and how it tore him apart. He finally gave up too- but he chose a different path to get away from her. He used a gun, and he made sure that he would never have to deal with her ever again. He made sure that no one would. He took his own life.

The world teaches us that family is the most important thing. On any given day, I am relentlessly reminded of this very fact. I have to “honor thy Mother and Father”. I have to share some picture on Facebook talking about what an amazing Mother I have, or have 6 years of bad luck. I have to honk my car horn if I love my Mom. Well, what am I supposed to do if my Mother is a cruel-hearted, narcissistic, curmudgeon who doesn’t care? But “Blood is thicker than water”, they say. “You’ll regret not getting along with your Mother after she passes away”, they say. I’m sick and tired of what “they” say. Who on earth are “they” and do they honestly think that I should have stayed where I was, allowing myself to be repeatedly abused by this woman? In what way is that alright? How could I respect my Mother when she constantly disrespected and marginalized me?

It’s never alright. And no autistic woman should have to suffer as I have suffered, by people who should be conditionally loving and caring. The reason that my Mother is the way she is? She is completely ignorant and uneducated about autism. And, she’s a rotten and cruel person who cares too much about what other people think. But the main reason that she has been so horrible to me? She is completely ignorant and uneducated about autism, particularly in females. As an autistic female, I not only didn’t fit into her strict paradigm of what the ideal daughter is like- but I also evaded diagnoses for my entire life. Because autistic women do not fit into the carefully constructed paradigm of autism diagnosis. Because it was created with boys in mind. Autistic boys, and possibly autistic men. Because apparently, autistic women are mythical creatures. Have you ever heard the phrase “Light it up Blue” for autism awareness, coined by the organization Autism Speaks? Why do you think you are lighting it up BLUE? Because Blue is for BOYS. Boys supposedly are more likely to be diagnosed with autism. Autism has historically been seen as something girls could not “have”. It was a boy’s “problem”. 

There has got to be a place where autism and feminism meet- because I’m looking for it. And I will speak out, write, share my experiences, join forces with my female autistic friends on Twitter, and continue searching for this elusive point in time. I won’t stop. When women’s unique place on the spectrum is universally recognized, I will be content. When young autistic girls don’t grow up in a world where neurology is ignored or misdiagnosed, I will be happy. When girls are able to be diagnosed early, receive proper support, and have their families educated/aware/accepting of them, I will be overjoyed.

I didn’t have any of that. I was misdiagnosed over and over and over again, as the chasm between me and my Mother widened. With every new diagnosis, she hung her head in shame. I was broken. The stigma of incorrect mental health diagnoses made her turn her back on me. I was not mentally ill and broken! I was autistic. I AM autistic. Growing up in a world that did not recognize my neurology of course created comorbid conditions in me. But mental illness is not a weakness, or a sign that someone is a “bad person”. Unfortunately for my Mother, and for so many other Mothers out there who have autistic daughters– it IS a stigma. A weakness. A sign that their daughters are “bad”.

People tend to fear what they do not understand. And in most cases, they will try to fabricate some reasoning to support the construct of their fear. My Mother was afraid of me. She didn’t understand how I thought, why I thought what I did, how I moved through this world. She couldn’t force me into her world. I refused. I fought back against her determination in a variety of ways. Her love was conditional, and since I could not fall under her conditions, I could not be loved. I was stamped with a virtual reject insignia on my forehead, and sent on my way.

And that’s the bigger part of the problem. As an autistic person in an ignorant world, where organizations like Autism Speaks see autism as a tragedy, a heartbreak, a fount of human suffering, the “A” word- AUTISM most certainly is a scarlet letter. We need to move far, far away from seeing people with Autism as being broken and needing a cure, and instead seeing them for the amazing neurodiverse individuals that they are. (the fact that my spell checker does not recognize the word neurodiverse tells me something here- we need to strengthen the concept of neurodiversity!)

I’m angry. Can you tell? I’m pissed off. I’m mad that my Mother sees me as trash. I’m mad that I have to raise my Son without a Grandmother, because I had one- and she was amazing. I’m mad that I have to be fearful of telling people that I am autistic. I’m mad that autism in women is this barely explored territory. I’m mad that doctors made me feel horrible about myself and prescribed me complex medications my whole life, when the source of my difficulties in the world was autism- and the world’s ignorance.

I’m not just angry, I’m mad! And when I’m mad, I become passionate. And when I become passionate, that’s when I can help to change what is wrong in this world.

Are you mad? How are we going to create the much-needed impetus for change? Where is the place where feminism and autism meet?

Some representative highly-focused interests that I had as a young girl, no clue I was autistic.

I was diagnosed on the autism spectrum when I was 41 years old. A very late diagnosis.

The truth is, that females represent differently than males. Their interests may appear to be quieter. Or more in line with expectations for gender. Or their social skills may appear sharply contrasted with those of autistic boys, so they fall under the radar, unnoticed. In “Understanding the Gender Gap: Autistic Women and Girls”, author Cynthia Kim writes that “Autistic boys tend to have “odd” special interests like outhouses or stop signs. The unusualness of their interests sends up a red flag. In contrast, many girls develop a special interest that is similar to the interests of their peers: dolls, music groups, horses, books. However, the intensity or depth of an autistic girl’s interest is different from the way her peers engage with the same subject. An autistic girl may be more interested in collecting or cataloging information about her passion, she may develop an unusual depth of knowledge for her age, or she may spend an unusual amount of time pursuing one interest, to the exclusion of other activities.”

I’m not writing today to recapitulate information about autism in women. As an autistic woman, I’m here to provide my own personal perspective. Blogging about being a late-diagnosed autistic woman. So I thought I would share with you some of the many special interests I’ve had in my life. I’m always interested to know what experiences other autistic women had as children. I have actually blocked out a great deal of my childhood. I simply don’t remember it. What I do remember, I recall in exquisite detail.

As a child, I was not interested in the things that other girls were interested in. I was a “tomboy” and once I was old enough to put up a fuss over the frilly and girly things my Mother dressed me in as a toddler, I asserted myself. I most often played by myself when I was younger. I will write in greater detail about my childhood in a future post, but for the purpose of this, I will be mostly listing my special interests and how they manifested.

• Fishing. I was obsessed with it. My Grandfather owned a hunting/fishing shop, took me fishing, taught me to catch/clean/cook fish. I developed a keen interest in lures. I collected them, organizing them by color, type and size in what eventually became a massive fishing box. One of my favorite lures was the “jitterbug”, which came in more color combinations than I could collect. My Grandfather let me have the first pick of every shipment. I had over 100 jitterbugs in my tackle box. I loved how they looked. The colors, the glitter, the shiny parts. I loved the warbling sound they made in the water. I would cast my lure into the water over and over and over again, listening to that sound. Watching the glittery parts glint in the setting sun. I never caught a single Bass with a jitterbug.

• Astronomy. From as early as I can remember, I would wake up in the night, and look out my window, looking for the hunter chasing the tiny cluster of stars, The Pleiades. I remember when my issue of National Geographic World magazine arrived and it had a fold-out, glow in the dark star chart inside of it. My Father gave me his binoculars, and from that point on, I was entranced. I would spend hours on clear nights, laying out in the yard on top of the picnic table, staring up into the sky. I memorized the night sky. I could name all of the constellations, and the stars in them. What I could spot with the binoculars, I did. Oddly enough, I never became one of those children who wants to become an astronaut. I just wanted to lie on the picnic table and stare up into the sky and identify/catalog things. In the winter, I took a sleeping bag out with me. I remember how upset it made me when I was called back inside at night. I could have stayed out there forever, it seemed.

• The Bible. I was raised in a very strict Baptist household. From an early age, I remember being in church many times a week. When I was about 8, I was enrolled in a weekly youth group called “Awana”, where you basically memorized Bible verses and recited them, in order to get a signature in your guide, then move on. You also played games, had snacks, etc. I didn’t care about that stuff. I wanted to memorize as much as possible, get signatures, and little award charms and gems added to the small metal bars and emblems that I wore on my grey and red Awana shirt. I didn’t find meaning in the verses I memorized and later recited. They were just patterns of words to me. I have always had an incredible capacity for memorization, and I was so good at it, that I became the only child to completely finish the entire Awana program. I was so good at it that they accused me of cheating. I promptly proved them wrong, by reciting back verses at will, from long previous passages. I eventually recovered and began to read the Bible for content. I was fascinated with the characters and their relation to each other. Their family trees. How it all fit together. I became a detective, finding numerous incidences of things that didn’t quite match up, or flow cohesively. I had Bibles in different versions and compared them. King James, American Standard… I loved the smell of them, their delicately translucent paper, the way the pages ruffled, the ones with gold trim on the pages, or red trim. Or purple. The thing I never actually did, however- was believe anything I read in the Bible.

• Cemeteries. My first childhood memory is of sitting on the cement steps behind out house, looking out over the cemetery. The steps were smooth concrete, with sharp little ridges molded into them, which stuck into my legs. I was sitting there with a red barley sugar lollipop in the shape of a rooster, and a purple plastic cup of water. I didn’t eat lollipops like most kids. I dipped the pop into the water, and then into my mouth. I would often walk through the cemetery, I was fascinated with the textured stone, the engraving, the little statues. When I was five, we moved to a different house. What was right next to it? An old cemetery, overgrown and surrounded by a rough stone wall. I played in there all the time. I made grave rubbings of every gravestone I could. I tried to imagine the people buried there. I was horrified when I found a child’s grave. I could often be found clearing brush and overgrowth off the graves, or balancing on the stone wall, walking around the perimeter, making sure all of the stones were in place. My imagination was vivid. I fantasized that each gravestone was a portal into the underworld, and that there were steps underneath them, which led down, down, down. Other children wouldn’t come into the graveyard and play with me. That was fine with me, I really preferred to play alone. Later in life, we lived near another large cemetery, where I often went for walks, and photographed the angel statues. This upset my Mother, who thought I was “morbid”. When I lived in Rochester, NY, I lived near Mt. Hope Cemetery, which is one of the most magnificent places that I have walked my dog on a daily basis.

• My Dollhouse. Actually, no “dolls” ever lived in it. It was a mouse house. I had these little mice, which were actually actual tiny mice which had been crafted from mouse hide/fur. This never grossed me out, oddly. My Grandfather was an avid hunter and my Grandparent’s house was full of animals which my Grandfather was extremely proud of. There were two huge black bearskin rugs in the TV room, hanging on the wall. They were on a thick red scalloped felt, and they looked alive to me. Their glossy teeth, the prickly texture of their tongues, their felted ears. Walking upstairs, the entire wall was covered with smaller creatures, mounted as if they were standing at attention in the wild. I am not sure what creatures these were. They were all sorts of mink-like rodents. I imagined that they came to life at night when I was asleep. They ran like shadows out of the house and gathered in the forest, where they ran and frolicked. Much like my tiny little mice did, when I was sleeping. Or when I left my bedroom. I carefully crafted the interior of my dollhouse, wallpapering it, sewing curtains, assembling intricate furniture from kits. I even crocheted tiny little rugs for the rooms. My mice had a beautiful home, and I spent hours lost in the details of it. Once, my cat got into it and shredded my mice. Apparently, they smelled a little too much like prey to him. Another time, another predator broke into my room and destroyed my dollhouse, trashing the rooms, furniture and careful arrangements I crafted. That predator was my Brother. I got a lock on my bedroom door after that.

• Antiques. My Father had an antique store, one of his many professions and ventures. I loved going to the store with him, where I would dust and wax furniture, watch him lovingly upholster new cushions onto them, and arrange the settees in his showroom area. On the weekends, we would drive to auctions or estate sales. I soon garnered a collection of antique hats, antique brooches, antique hat pins, antique linens, old records, and carnival glass. I could identify the style of furniture. Queen Anne, Chippendale, etc. I learned about different types of wood used in furniture, and how to identify it by the grain. But I was completely taken by the carnival glass. The colors, the patterns and the iridescence! To this day, I still search for authentic carnival glass. At flea markets, tag sales, roadside sales, and antique shops.

• Books/Libraries. A trip to the library meant books. Books meant the smell of books, the delicate fragrance of knowledge and adventure mingling. The sound of pages turning, the slight indentation of the letters on the pages. I would check out piles of books from the library each week. I would consume them, quickly. Not just their words, but the sensation of holding them. I remember the day that I came across a neat row of tiny, leather-bound books with the thinnest paper and golden edging. Every work of Shakespeare, in a row. I checked out every single one, and I read every single one. I contemplated telling the library that they had been lost, or stolen, or anything to explain them disappearing and making a permanent home in my room. But I couldn’t do that. I returned them, but visited often. Checking them out over and over and over again. A trip to a new library was equally exciting- the same books, but in a different physical form. Books hold secrets for me. Just yesterday I went to the flea market and bought two old books- a volume of chemistry, and Latin. I would often check books out of the library because of their smell, or the feel of their pages, or the texture/pattern/design of their covers. The inside content did not necessarily matter- it was usually a second thought. I discovered many things through this, that I otherwise might not have stumbled upon.

These are some of my main, obsessive interests as a child. They don’t represent all of my interests, but mainly the ones that I remember the most. I had many obsessions, and loved to be outdoors, exploring. I loved to climb trees, follow streams, fly kites, catch salamanders/frogs/lightning bugs/caterpillars. My imagination was so vivid that I didn’t need friends with me on my explorations. Usually, they got in my way and dampened my experience.

I often wonder how it is that my parents didn’t notice that I was so very different. Actually, I think they did, at least sometimes. My Mother was not happy that I did not play with other girls, and that I was more often than not, disheveled, dirty, and dressed like a boy. I vividly remember one incident, where I came home very muddy, and was promptly put into the tub, dressed in white shorts and a pink shirt, and forced to go up the street to play with two girls named Ellen and Kathleen. It was traumatic for me, to be forced out of my natural habitat, and into an uncomfortable social situation. To play with dolls. Dolls! Sure, I had dolls when I was a child, but my dolls didn’t do boring things like have tea together and talk about being princesses. My dolls were savage and raw women, whether they were pretending to be Native American medicine women, or untamed Goddesses. They were never “Barbie- Ken’s girlfriend”, or anything of that sort. Most of the time, I chopped off their hair, or colored it in with black markers. My dolls had war paint. They were fearsome. They weren’t stupid, frilly dolls in pink corvettes and dream houses. This all offended me. These girls offended me. The pink shirt offended me. I just wanted to scream, kick and run out of that house. I wanted to be alone in the forest, or up in a tree. Just me, the birds, and whatever book I had chosen to carefully wrap in plastic and tuck into the tree branches, so that I could read it and keep it safe from the rain.

Are you an autistic woman? What were some of your narrowly focused interests, as a child? I am eager to hear about yours. I will write soon, this time about my interests as an adult.

Thank you for reading!

I moved! Rural life, Autism and Neurological “Swaddling”

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Last week, I moved! Autistic girl in the country. It’s the rural life for me. Goodbye overpopulated suburbia. Hello to fresh air, a nice front porch, and a backyard full of deer and crows. And a nearby pasture of cows and donkeys. My Son is happy. Our two rescue dogs are happy. And I’m happy! A lot of people prefer the city, and would cringe at daily country life, but for me? I’m overjoyed at the silence, the stillness and the wonderful lack of chaos.

I haven’t written in a week, as I’ve been trying to get unpacked, settled in, and organized. It’s a slow process but I’m getting there. I miss writing!

In the last few years since my diagnosis, I’ve invested considerable time towards figuring out how to live a life that was better suited to my unique neurological needs. I need to surround myself with soft cushions, not sharp edges. I need organic, not synthetic. First off, I should mention that I was diagnosed as an adult, at 41 years of age. I don’t have any supports, so after learning of my situation, I was determined to try to find a way to allow myself to get on in the best possible way, in a world in which I’ve always felt so very foreign.

Sometimes, a big change is needed. Like moving! My lease was up on the house we were renting in a very populated, suburban area. While I loved the overall region we were living in, I found that life in the hectic suburbs was not for me. Things like ambient environmental noise, light pollution, air pollution, noisy neighbors, frequent solicitors, heavy traffic, lack of green space, and my sensitivity to radio/cellular signals all layered one upon the other. The result was an increase in all of the sensory processing issues, stress, anxiety, and disordered sleep/eating that accompany it. I felt like I was constantly on the verge of short-circuiting, and I was so tired from feeling wired, that I couldn’t even begin to deal with the social aspects of making friends or fitting in. I should add that my feelings were paralleled by those of my Son. He has had the exact same reactions to suburban life that I did. In fact, it was his idea to move out to the country.

Now? I feel much less symptomatic. More calm. Less anxious. I’m stimming less. I actually feel “at home” here. I’ve been able to make daily trips to the closest store (unfortunately, it’s a Walmart), and even a visit to the veterinarian, as one of my dogs is sick. Normally, I would only make one of these outings once a week. And then, on Sunday morning, which I determined to be the least busy time to go. But out here where the world is quieter and moves at a slower pace? I can go at any time, and I’m alright!

I don’t know what normal is. I don’t even like the word normal. I don’t like how it looks, and I don’t like what it implies. But if I have to use a word to quantify how I feel, I would guess that maybe that word is, in fact, “normal”. The reason being that since moving out here, I don’t feel like my neurology is constantly getting in my way. I’m happier, more productive and more creative in a rural setting. I believe it’s because I’m not being assaulted by my environment, and the aural and visual chaos that accompanied life in the suburbs. There are no screaming children outside my window. There is no constant hum of the freeway. There are trees and grass instead of metal and concrete. The only wifi signal I am accessing is mine. There are far fewer cellular towers. It’s as if my entire body has calmed down a bit. When my brain isn’t fighting off an overabundance of information, it actually has time to transform it’s omnipresent frenetic awareness of the world into positive things. Like creativity, organization, and trance-like hyperfocus that often feels like it is boring a hole through the fabric of time and space into an alternate dimension.

Yes. If I am going to live my fullest autistic life, I am going to do it in the country. I am going to avoid the city. I might visit the city, but I know my intolerance to people, lights, sounds, chaos, motion. I really just want to sit on my porch, with my dogs. And oh, how I love this porch.

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My ultimate goal is to live even further out into the mountains. The Southern Appalachians, as the swing through the most Northwest portion of South Carolina, is where I call home. But I’d like to put down roots, to actually own some land and a small house. With a porch, of course. I’d like to add some chickens and goats to my menagerie. I adore animals. I have two rescue dogs, but would easily have six if I could save or foster more. One of my life goals is to rescue senior dogs, and give them a beautiful, peaceful and happy life for the remainder of their days. Writing that sentence makes me well up with tears. I just feel such a special connection with dogs. Quite possibly because human communication is so difficult and stressful for me. Not with my Son. But with the rest of the world, yes.

My grocery list now includes giant bags of carrots. We visit the pasture in our side yard daily, to hang out with these two beautiful donkeys. My Son named them Hagrid and Hermione, even though they are both male. I call this time of day “donkey therapy”. Donkeys are very therapeutic to hang out with. They’re very teddy bearish. I love their furry ears. They love affection. And carrots.

1888507_597638566986068_1915139497_nI have made many bovine acquaintances, as well. The cows aren’t as domesticated as the donkeys, but I’m working on it. I lived in the country when I was younger, and worked at a local dairy when I was a teen. So I have a soft spot for cows. This beautiful cow is named Maira.

1981896_604289242987667_1004619158_n1622667_599999370083321_188601650_n 999127_604660672950524_30380701_nThere’s several hundred acres of forest behind the house we’re renting, and the backyard area is ridiculously huge- the dogs are in a state of canine bliss. The rent is cheaper than it was in the city, too. Bonus! Living a simpler life with fewer financial responsibilities is another aspect of my living a life more in tune with my neurology. I’ll be writing about that soon.

1743548_602458539837404_2102854301_n 1959503_603444856405439_1505920385_n 1970632_603386746411250_1722068682_n 1888733_603386343077957_2003337203_nI‘ve still got a lot of unpacking to do. The was a bunch of water damage caused by a pipe that cracked during the polar vortex. It’s taken over a week to get it dried up, so I couldn’t set up my office, or my Son’s homeschool area. This was really stressful, but it’s getting better every day!

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I love this house. It’s very bright and warm. It’s the perfect size. Small enough to make me feel cozy and safe, but not so small that I feel cramped and annoyed. There’s a small rock pond in front, where copious numbers of frogs live. They provide a constant symphony of croaks and grunts. I thought it would drive me nutty, but I really do like it.

The night sky here is exquisite. Light pollution is very low. We’re far enough away from any major populated areas that there is no orange diffused glow on the horizon. It’s just deep, dark, brilliant skies filled with diamond shards of stars. The first thing I moved into this house was actually, my telescope! I have a Celestron NexStar 6 SE scope. It’s a wonderful scope, I’ve had it since late 2011. It didn’t get much use at our previous address, because light pollution was so bad that I could only make out the brightest stars in the sky. I’m just 15 minutes drive from the Jocassee Gorges, which is supposed to be the darkest night sky in the Eastern United States!

Overall, life in the country has left me jubilant. I feel like my senses are being nurtured, rather than agitated. I’m very comfortable, and I feel neurologically swaddled, if that can possibly make any sense. Rural life is like comfort food for the soul. I used to force myself to live in populated areas, and try to interact with other people, events, and situations. This only led to more stress and increased symptoms and anxiety. My latent fears pronounced. Out here, they are more subdued. And when the chemical broth of fear is not poking molecular pinholes in your brain, you are free to exist on a slightly elevated metaphysical plane, where creativity and imagination are in charge.