A brief hiatus…

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I’m needing to take a break from blogging and activism for the rest of the summer. 

Certain priorities have to come first. Parenting, making a living, maintaining the house, expenses, preparing for the upcoming homeschool year. I wish I could handle all of these things AND regularly blog, but I can’t. I’ve been trying to, and it’s been taking it’s toll on me. Autism Activism is very emotional for me, and can exhaust my resources, leading to meltdowns. I need to learn to pace myself, and understand that I can’t participate in every single event that happens. It’s been draining my resources, which are limited. Even worse, is that I feel a great deal of guilt because I haven’t been able to regularly blog, or participate in flashblogs and activism. I’ve been trying to be kind to myself about this, because my situation is unique- everyone’s is. For some, activism and blogging is their main activity. I wish it could be mine, but that’s probably an alternate universe. I can’t compare myself to an activist who is married with a supportive spouse, or one who doesn’t have to work, or one who has children in public school with supports and accommodations. I don’t have any of that. Rather than beat up on myself every day for not being able to participate, I’ve decided to take a break, set some limits for myself, and return in September with a fresh and renewed sense of adventure.

Summer isn’t my favorite time of year. Living in South Carolina, the heat and humidity can become stifling in July and August, which results in more time spent indoors. I’ve always been more active in Autumn and Spring, and even hike all through the Winter. Even though my Son is homeschooled, we follow the regular school calendar in order to meet our 180 day education requirement. So he’s out for the Summer. A lot of parents who homeschool might find their schedule becomes easier, but for us- it is actually much more complicated and time consuming when he isn’t spending 4-5 hours a day working through his curriculum, online exercises, reading and projects. School provides daily structure and routine that he’s gotten used to, and it’s been rather chaotic for him without it. I can sense his anxiety! He has a lot of distinct interests and projects going on right now, and those have been ones that are time-consuming and require supervision, such as cooking, baking, and working with tools in the creating of his Viking shield.

So, that’s where my Summer has gone. I’m also working on implementing a brand new website design and platform for Aromaleigh Mineral Cosmetics (my small business that I started over 15 years ago, which thankfully supports us!), and my yearly huge project of getting all of my finances entered, categorized and prepared for the September and October deadlines of my income tax extension.

I LOVE TO WRITE, SO I WILL BE BACK WRITING REGULARLY, AS SOON AS I CAN!

In the meantime, please let me know if there’s anything specific that you’d like me to write about. I think that hearing some suggestions will get me inspired!

The T21 Blog Hop – June 2014

This is my first time doing a blog hop, so forgive any error in advance. 

And Happy Solstice to all…

The link of blogs in the hop doesn’t seem to want to show up when I preview this- so click the link at the very last sentence of this post, and it will take you to a page where you can see them.

Add your post(s) to the linky below by clicking the link and following the instructions. If you need further instruction for adding a reciprocal link to your blog post, follow this link.

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Click here to enter your link and view this Linky Tools list…

Why I will never be an Autistic “Warrior Mom”

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Image description: Rainbow diagonal stripes with white text that reads: “Remember: The way you treat Autistic adults now is how you are telling the world to treat your own Autistic children.” Red colored heart at center bottom of image. SOURCE

 

My Son just turned twelve, and is currently going through the diagnostic process for Autism/ADHD and Sensory Processing Disorder. We’ve just started this journey. Having a light shining onto his differences has made me appreciate how unique he is even more. I’m not a “warrior mom”. I don’t want to “kick autism’s ass”. Autism is not a disease. It’s not something that I can remove from my Son like some sort of hackneyed exorcism. I am tired of the pathologization of Autism.

I don’t want to change him, fix him, or force him to be “normal”, and I refuse to teach him that he has to do this in order to be successful or accepted. I am proud to be autistic, and I feel blessed that this same neurology which has caused me so much strife can now be used towards raising my Son to be his own individual, expressive, neurodivergent self. But I’m also a bit worried, and I’m not alone. My Son is worried as well. He’s recently begun following the Autism community, and is alarmed at what he’s read about Autism Speaks. The other day he said to me, “So… Autism Speaks thinks Autism is bad, and that it shouldn’t exist. They think Autism is like a demon. They think you’re bad. They would think I’m bad. They would wish people like us were never born. They are evil.” ( I believe that Connor read about or watched Autism Speaks controversial commercial) “I am Autism…I work faster than pediatric AIDS, cancer and diabetes combined…you have no cure for me…I will plot to rob you of your children and dreams. The truth is, I am still winning and you are scared.” 

You’re probably wondering how my Son, being both Caucasian and Male, somehow escaped diagnosis at a young age. After all, the most highly diagnosed group is in fact caucasian males. I briefly questioned this myself, but it’s more complex than any one thing. It’s a combination of factors. Everything from my being autistic to lack of familial support to my being a single Mother and his behavior seen as an extension of the stigma that society and my family has attached to this for us. If you think that there’s little stigma for single Mothers these days, you’re quite wrong. It’s alive and well, and I am constantly discriminated against, unfairly judged, and treated in a way that is much, much less than the “complete” family units I’ve observed alongside me over the years. I’ve been an outspoken troublemaker of sorts, in the eyes of my Son’s different schools- since as long as I can remember. Most likely seen as an enigma, an unusual woman with poor social skills, who found it difficult to convey her points within the framework of parent-teacher conferences, and the frequent parent-principal meetings that occurred.

My Son has spent the vast majority of his time with me- an autistic person. Of course I didn’t see him as being “abnormal” or as needing diagnosis. I saw him as being similar to me. I didn’t think it was strange when he had severe meltdowns in crowded public spaces, as I was on the verge of having one as well. I didn’t think it was unusual that he was so reactive to lights, sounds and smells. So was I. I didn’t think it was odd that he needed a lot of decompression, nap, or alone time. So did I. I didn’t realize he had delayed speech and that no one could understand him. I could understand him perfectly fine.

We have always lacked familial support. My family has spent scant amounts of time with my Son. Very scant. Pathetically scant- but the whole while defending their behavior as if I was the one who was wrong for expecting more. My Mother’s idea of spending time with him was giving him a bowl of crackers and sitting him in front of a movie while she pranced off to check her online dating profile and sell things on Ebay. My Son didn’t have a doting Grandmother, who loved spending time with him and would have noticed (or in this case, actually cared)… but I also think it’s possible that my Mother did notice, and simply chose to not say anything. It’s no secret that she sees me as a broken, defective human being, and outright treated me as such. Do I believe that she also saw my Son this way? Definitely. My Mother spent an inordinate amount of time with my Brother’s four children- yet she treated me and mine like we were factory rejects. You can’t quantify that. It’s just too obvious.

The school system has repeatedly failed my Son. It got to be so traumatic and counter-productive for him, that I removed him from the school system and started homeschooling him. This has been a positive experience for him on so many levels. He has learned more, grown more, and become more happy and confident. There is no gender bias in our classroom, so he no longer feels awful for the crime of having been born male (this was so common in his public school classrooms, as was severe female bullying). He no longer has an abusive teacher punishing him for stimming, by removing him from the other students and segregating him to the back of the room, near the noisy hallway. He’s no longer being bullied for not being athletic, or interested in the same mainstream trends as other students. He’s no longer being made painfully aware that he’s different- in the homogenized environment of the public school, where compliance and a herd mentality are prized. He is being treated like an individual, and allowed to learn, progress, and grow- like an individual. His neurology is seen as a gift, not a curse. 

I have a very hard time relating to parents of Autistic children who want their children to excel in neurotypical ways. You know, for them to be “normal”. I am aware that a great deal of my resistance to this concept is because of my childhood. My Mother wanted me to be “normal”. She wanted me to be like other girls. She frequently cited examples of specific other girls she wished I was like, and ironically, they were often girls who made fun of me and bullied me. I have always maintained the belief that it is perfectly acceptable for my Son to not be like other children. That it’s important for me to honor, respect, and accept who he wants to be. Because I was not respected, or accepted by my own Mother. To her, I am and always will be- a broken disappointment. This hurts, and makes me angry. Nothing will ever change my Mother and how she feels about me. It is her loss, but ultimately my gain- because her toxic cycle will never be repeated and passed on to my child. He is free.

He is free, and so am I. I will not put my energies into waging a war against Autism, or being a warrior Mother, fighting the school system. No, I will put my energies into helping him to learn and grow. I will put them into setting a positive example for him as an Autistic adult. I will put them into helping him to learn how he can be kind and supportive to his neurology. I will put them into teaching him to always respect and nurture himself. I choose to direct these energies back into our family unit and invest them wisely, in order to create a better future.

 

So, are you wondering, “If not Autism Speaks, then WHO?” Well, I am so glad you asked. Please consider these resources, first and foremost:

Parenting Autistic Children with Love and Acceptance: https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance

Autistic Self Advocacy Network: http://autisticadvocacy.org/

We are Like Your Child: http://wearelikeyourchild.blogspot.com/

Thinking Person’s Guide to Autism: http://www.thinkingautismguide.com/

The Golden Hat Foundation: http://www.goldenhatfoundation.org/

Autism Women’s Network: http://autismwomensnetwork.com/

“Mom, it feels like we are the last two people on earth.”

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I’m in the process of working on a post about my Son’s diagnosis journey, but for now, I will share with you these pictures of our recent Stand Up Paddleboard excursion! Organized sports are not something that has worked out for my Son. And we’ve tried several, that’s for sure. Most of the time, he admitted to me that he only wanted to try a certain sport so that other kids would like him, or his Dad would like him, or he would make a friend. It breaks my heart to write that.

Nevertheless, it’s important for a boy of his age and neurology to have some healthy physical outlets. I’ve found these for him in archery, hiking and SUP. SUP stands for “stand up paddle board”. We took a few lessons last year, and really fell in love with the sport. It builds strength, balance and a whole lot of confidence. It’s relaxing, and when the weather gets too hot, humid and buggy to hike in the woods, SUP is like hiking on the water.

While other boys are playing group sports, loudly yelling and kicking around balls, my Son quietly sits, dreaming of being one with the water or the trees, away from loud voices, loud thoughts, and loud demands. SUP is something that he craves. He asks to go to the lake almost every day. He longs for the solitude. He said to me, on the day I took these photos:

“Mom, it feels like we are the last two people on earth… and I think that I’m OK with that. I just like being out here and away from everyone and everything.”

We live in the most Northwest corner of South Carolina, where the Appalachian mountains swing into the state and then continue onward into North Carolina. This area is blessed with an abundance of water. We’re surrounded by it, on all sides. “Oconee” is the name of the county we live in, and the name means “land beside the water” in Cherokee. This particular SUP trip is at Lake Jocassee, a manmade reservoir which is also generates hydroelectric power. It’s a huge lake, the biggest we have SUP’d on so far. While I grew up in the mountainous lake region of Northeast Pennsylvania, this area has a distinctly magical quality, and looks like another country altogether. At times I felt like I could have been on a Scottish loch. We like to start as early as possible in the morning, because nothing comes close to the lifting of dawn from the waters. It’s a delicate time of day, when we both feel most in tune with our world.

We paddled about 12 miles, for a total of 8 hours on the water. This was not planned to be so long, but I did not know about the Southeasterly headwind that whips up on the lake around Noon each day. We struggled to get back. At times, I wished that a boat would come close to us so that I could beg them for a ride back to the boat launch. That didn’t happen, so we had to find the strength to make it on our own. We’re both still recovering from the trip, with sore muscles and blisters on our hands. Lesson learned! Other than that, it was a serene and most beautiful day. We will go again, soon. Maybe tomorrow?

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Sometimes it’s important to take a break… [Neuro-friendly Life- Day 10]

It’s been only eight days since my last post here, but it feels like months. I feel guilty about it, too. I have many wonderful friends in the online community and I see a constant stream of tweets, posts, activism, writing, sharing, and discussion coming from them. And I feel very badly that I just can’t do it all the time. I just can’t.

Don’t get me wrong, it’s not for a lack of wanting! It’s simply that there isn’t enough spoons in my day to handle what I’m working through right now, in the present. Spoons? Why on earth are you talking about spoons. Saying “I don’t have the spoons” is just another way of saying “I don’t have the resources available to me at this time”. Whether the resources are energy, brain power, or any other intangible or tangible thing needed to accomplish any certain set of goals within a certain day.

My problem is that I do too much. I exhaust myself, because I have to do what I have to do. It’s just how my life is. I’m a single Mother, and that ain’t changing any time soon, nor do I have any interest in changing it. I homeschool my Son because the public school system has failed him, and I am determined to be an advocate for him and do what is right. I don’t have parents to fall back on. I don’t have a local social support system, except for one aspect of my work. Each and every day takes a lot of energy, and I have to choose between putting my spoons in the most needed and necessary place. I’m not complaining. This is just how my life is. It’s always been like this, so I’m not pining for a life long lost. I’ve always lived life in a tumultuous and stressful fashion, much to my Mother’s distress. “Why do you always have to make things so difficult?” “Why do you attract negative people or things into your life?” “Why isn’t life easier for you?” I can’t answer that. I gave up trying to figure that out a long time ago, because it doesn’t help to sit on my laurels and expect the universe to drop an answer into my lap.

A lifetime of never having enough spoons, combined with severe anxiety has depleted my body in ways that have begun to show themselves in obvious ways, in the last few years. I can’t imagine that a lifetime of stress, constant anxiety, on and off depression and being substantially medicated with psychotropic medications can have a positive effect on the body. I fight daily with chronic pain. I don’t usually blog about it, because it only makes me more aware that it is there. But it’s a constant, underlying thing. Dull and buzzing in the background, like a live wire. The chronic pain has resulted in another layer of anxiety upon another. A lot of energy is put towards trying to mentally dull the pain in my body. I’ve done a lot of meditation work, energy work, and yoga nidra meditation to help deal with chronic pain.

In my 43 years, I’ve depleted my body. I have adrenal insufficiency, which manifests itself in chronic pain and fibromyalgia-like symptoms. When I say I don’t have the “spoons” it’s not just that I don’t have the desire, but that my body actually is not producing the necessary endocrine hormones I need to adequately function. My body doesn’t have the fuel. It doesn’t help that my endocrine disruption has resulted in rapid and massive weight gain over the last two years. I’ve gained FIFTY pounds, on top of what was a very healthy and normal average weight for a woman of my height. This makes me hurt more. It makes me feel slow, old, and creaky. Any person might look at me and assume I don’t take care of myself and that I subsist on soda, burgers and fries. But the truth is, that I eat an extremely strict diet. I was vegan for a year. I now eat a gluten free, dairy free, egg free, as organic as possible, “anti-inflammatory” diet as prescribed by my Doctor for tested food sensitivities. I eat barely any sugar, other than what is in the coconut creamer in my decaf coffee every morning. Any “normal” person would be ripped, fit and in the shape of their life with the regimen I follow. But me? I’m the heaviest I’ve ever been in my entire life. I can’t do ballet anymore. I can’t do yoga anymore. I can’t go on long hikes anymore. But, I garden. I work on my feet most of the day. I clean my own house. I hike when I can. I paddle board. I do Wii fit with my Son. I am a pretty active person, and I do it while being in physical pain. I don’t want my Son to know how much my body hurts. I don’t want him to worry about me. I want him to enjoy his days.

All of this takes spoons. More spoons than I have.

I’ve noticed that I am not alone in having chronic pain, fibromyalgia or adrenal issues. I’ve read about similar experiences from numerous other Autistic women. I am honestly starting to wonder if there is a correlation between Autism and endocrine deficiencies. If you are Autistic and have been diagnosed with fibromyalgia, chronic fatigue syndrome, hypothyroidism, adrenal insufficiency or premature menopause, please comment on this post! I am really interested in hearing your experience, age, onset, whether or not you were diagnosed early in life, etc. I was diagnosed at 41, so I’ve lived most of my life in pretty extreme levels of anxiety and stresses.

Solutions? How to get more spoons? Honestly, the only way to get more spoons in your day is to get more supports. And this does not come easy, especially when you have an invisible disability. It also doesn’t come easy when you’re like me, and you seem to invite the suspicion of other people much more easily than their sense of caring. What I mean by this is that I am an enigma to most people. I am a single Mother. I live with my Son and two dogs. I work at home. I homeschool my Son. I rent a house. I don’t have people or family regularly coming to that house. I am very quiet and keep to myself. Rather than make sincere attempts to get to know me, people like to gossip and fabricate all sorts of inane and ridiculous theories about my existence. Through the rumor mills of past neighborhoods, I have heard things like, “I heard that she gets tons of alimony every month and doesn’t work”, “She ships out small packages every day, I heard she runs a pornography website”, ” Her parents must be very rich and support her, because she doesn’t go to work every day”, “I think she might be a high-end prostitute, because she doesn’t work, and is home all day long. She must leave the house at night to work”. YES, ALL OF THIS STUPIDITY!

I’m not making this up, people have made up these ridiculous stories about me in the past. All because they couldn’t figure me out. And yet, they never tried to get to know me, or talk to me. They just assumed. If they had talked to me, they would have found that I work at home. That I work very, very hard. That no one supports me. That my parents give me no money, no man gives me money, the state doesn’t give me money. I have not won the lottery. There is no secret. I am a simple, introverted, hard-working person who is deeply sensitive, passionate about being a good Mother and a good citizen of this earth, and I like knowledge. Lots of knowledge. And I detest ignorance.

I would love to have more supports, even just very simple and basic ones. I think every Autistic mother would, whether it was a delivery of some needed groceries, help with cleaning or cooking, or if children are younger, help with child care. Even just a small amount of assistance can make a huge difference.

As I write this, I’m eagerly awaiting for the mail to arrive. About two weeks ago, my Son was referred to the behavioral pediatrics unit in Greenville, for formal Autism spectrum diagnosis. I blogged about it a few posts back. I filled out a pile of papers, and sent them in, and am now waiting to hear back from them about an intake appointment. It could take months for them to be able to see him. I already know what his diagnosis will be. Most likely PDD-NOS with sensory integration issues. I know this because my Son is exactly like me in his neurology. The waiting process is difficult. I am eager for this journey to commence. In part, because I am curious if it will open up the opportunity for my Son to have some social or educational supports, opportunities, or activities that are otherwise unavailable to him now. I began homeschooling him last year, after several years of constant warring with the public education system. It’s been what is best for him, as he has blossomed, and become a student of the world. He was experiencing substantial depressive episodes while in the public school system. These have been alleviated. He often says he feels good, or feels confident. He sometimes describes emotions that are new to him, which he has no words for. He describes how they feel inside his body, and I understand him.

So that’s where all my spoons go. Every morning, I have to prioritize. The most important things get the spoons. Everything else has to wait, and be accomplished in due time. Work, in the form of creating financial support, takes a lot of spoons. I am very blessed in that I love what I do, and I enjoy the creativity and feel energized by it. However, on a daily basis, my work is also extremely stressful for me. There is little to nothing I can do to change or alleviate this, which means that I have to change. Some days, work will require more resources, leaving me no spoons with which to write or engage in activism. Other times, my work levels will wane and I will have some free thoughts to put to words. Like right now.

Through it all, I feel guilt. Nonstop guilt. Always feeling like I am not doing enough. I realize that if my situation were different, I most certainly would be able to do more… but it is what it is, and I have to make the most of it with the spoons that I have. And most importantly, my health is of paramount concern. I’m fortunate in that I have been able to begin towards healing, or at least halting the further degradation of my health. But it’s a daily struggle, to maintain a certain level of health. You don’t realize how important health is until you start to lose it. And in my life, it’s the most important thing I’ve got. I need to maintain good health and prevent illness, so that I can be here with as many spoons as possible, for my Son. He needs me. He relies on me. He is still very young, and will be needing me for love, support and guidance, long into the future.

This is what makes me tick. This is why spoons are important. Allocation of resources. It’s a crucial aspect of the successful implementation of just about any plan in life. Knowing your limits is one of the most difficult, but important lessons I’ve been trying to teach myself. I remind myself daily that nature herself works slowly and carefully, but always seems to get the job done. Nature works with a set amount of spoons, carefully allocated, and persistently succeeds at her task. As I watch the tomatoes in my garden slowly grow and ripen, I remind myself that it’s alright to take a break, to go slowly, to even stand off to the side and watch once in a while. You simply have to take a break every once in a while. So go ahead, do it.

 

Wanting less in a world that wants more… I’m tired of “shiny happy” Autism inspiration stories in the media! [Neuro-friendly life: Day 9]

We are like sculptors, constantly carving out of others the image we long for, need, love or desire, often against reality, against their benefit, and always, in the end, a disappointment, because it does not fit them.”  Anaïs Nin

From my first breath in this world, my parents wanted me to be the best at everything. To be successful, strong and wealthy. To stand out in certain carefully selective ways, but only those ways deemed to be acceptable. To be beautiful, desired, well-mannered and socially acceptable. Divisiveness was ingrained in me, in the most pernicious of ways. I was taught to set myself apart from others, to hold myself to the highest standards, and to not be content until I had achieved all of these things and however many more were required along the way. (* Note: I say “parents” as I write this, but only because it is impossible for me to separate out the often opposing desires of my Mother versus my Father)

But, what about being happy?

What about joy? Wonder?

Or the vibrant sensation of just being? 

While I tried in earnest to fulfill my parent’s expectations of me, it was never what I myself wanted, nor what made me happy. No one knew of my inner turmoil, which took the form of constant anxiety. I was unaware that my experience of the world was anything other than normal. As I gnawed my fingernails into shortened little stumps, as I retreated into my imaginarium, as I kept telling myself that I only had to do this, that and the other in order to end up here, there or where… all these things. I knew I was different, but I never understood just how much. I hid my perceptions of these things, for they were weaknesses, and I was to be strong.

The strong remained silent and quietly dealt with their inner demons. The strong did not cry, complain or share their worries. But I was not strong, I was only pretending. My parents wanted for me to be stronger than they were. And to succeed within the highest echelons of neurotypical expectations and rewards. While my Mother never said it outright, I believe she wanted to see me working in a well-paid career, married to a Doctor or Lawyer, and living a plush life in an expensive house and all of the accoutrements that such a life brings. But… this is not me. It never was me. It’s wasn’t me back then, and it most certainly is not me today. I have failed their expectations of me in every way possible.  

I’ve been inspired to write this, for it’s been something that’s been on my mind for a while. Ever since I started writing and was welcomed into the online Autism community. It’s a very expansive community, quite possibly as expansive as the varied Autism spectrum is, itself. But from my first week of exploring it, I felt a certain amount of uneasiness at the profiles, vignettes, interviews and stories about Autistic women being shared through various media. What I’m talking about is what I’ve had two different friends refer to as “shiny happy stories” or “inspiration autism porn”. (Now obviously, the word “porn” here does not imply anything of a sexual nature.) What I’m referring to are those shiny happy perfect success stories about Autistic people. The ones that you’re glad are out there, but at the same time, they leave you sitting at your computer, feeling even more horribly lacking in this world.

These stories are typically not just incredible examples of Autistic success, but they would considered to be neurotypical successes as well. Is the only type of success in this world that which fits into the neurotypical paradigm? What about people who live a more quiet and simple life, and aren’t on the stage, published writers, accomplished scientists, aspiring artists, or esteemed entrepreneurs? How many of us on the spectrum are sitting here, right now, feeling that we are somehow less worthy as people- because we would never be the subject of one of these “shiny happy” stories depicting autism? I’d wager that there are many of you who feel as I do.

Not only are the stories mostly “inspiration porn”, depicting a very select percentage of those who are Autistic from behind a rose-colored lens, but the stories typically depict white or white-presenting women. I honestly do not believe I have seen a story in the media yet… whose subject was an Autistic woman of color. I write that as a white/white-presenting woman who has enjoyed “white privilege” throughout her life. What about diversity? What about redefining this definition of “success” or “worthiness” in relation to Autistic people? Only presenting these type of stories to the media is an insult to so many of us who are living exceptional lives in our own ways.

I’m far more interested in the grit than the grace. I don’t really care that you’re a successful in any myriad of neurotypical markers. Fascination for me lies in the daily process of your Autistic life. I don’t want to read a long list of someone’s achievements, for I believe that every human being, Autistic or allistic- is far greater than the sum of their parts. When I keep reading the same type of stories in the media, it disheartens me. It makes me feel like there is a separation in the Autism community that is really no different than that which I experience in the neurotypical world, which I have fought for so long to fit into. The old voices return. Those voices saying things echoed throughout my life, such as “You’re not good enough”, “Your contributions aren’t worthy”, “You’re not special like this person is”.

I’m not sure who is at fault in presenting these skewed perspectives, but I feel that it is more often than not, those who consider themselves to be Autistic allies, or advocates. In many cases, it is healthcare providers who feel that by presenting these stories of their choosing to the media, that they are signal boosting the awesomeness of Autistic people. That may be true, in relation to how neurotypicals perceive the stories, if they do in fact, shift their perspective about what Autism is. My issue with this is that they signal boost the awesomeness of Autism at the expense of the majority of Autistic people. And in blatant honestly, that sucks.

I’m Autistic, and I will never fully succeed to neurotypical expectations, whether they standards are those set by my parents, or by society. It isn’t going to happen. I’m not an exception, I’m part of the greater norm. I excel at certain things, but these are not things that are going to put me on the neurotypical map, or end up with my being some feature story in a media feed. And that’s perfectly alright with me. I’m out of the loop, and that’s the way I like it. I’m not going to be a member of the small percentage of Autistic people who travel into space, discover scientific breakthroughs, write computer software, are desired public speakers, are amazing singers/dancers/performers, or any other version of any other success story you might have read, or will read in the future.

I don’t write this to diminish the amazing stories and achievements of those Autistic people who are the subjects of these stories. I write this to protest society’s definition of success. I am sick of it. I am so tired of a lifetime of feeling like I had to be a “success” that the last place I want to continue to have this message drummed into my head day after day is in the Autism community, where I want to feel safe and accepted. In the past month, I’ve unfollowed quite a few news outlets and accounts because I reached my saturation point of having “shiny happy autism inspiration stories” jammed down my throat. I’ve had enough! I’m an Autistic woman and I don’t want to read these stories! I can’t relate to them, and they make me feel sad and anxious.

I want to read about the actual everyday experiences and challenges of Autistic people, and in particular, Autistic women. One of my favorite bloggers is also someone whom I consider a dear online friend, An Autistic Bird Sings. I love reading her blog, because I connect deeply with it. Her writing is visceral and real. It’s about her experiences in her day to day life as an Autistic woman. I’d rather read stories like this any day, than to have one more shiny happy Autism profile appear in my news feeds. She recently re-shared a post she had written several years ago, and it resonated with how I’ve been feeling the last few months. I’m so glad she shared it, because I’d like to share it with you! The post is “It’s no bad thing to celebrate a simple life” and it talks about the pressures which she feels to keep up with the fast pace, demands, expectations and societal neurotypical norms. In one passage, Bird writes:

“What in the world have I done with myself?  So many people around me out in blogland, my relatives, and face to face friends as well, so many of them seem to be doing things. Some are starting their own businesses, or run their own businesses (and I have done that a couple of times, very, very, very small businesses), some are writing books or giving classes Online for this or for that.   They are so busy, busy, busy. I feel as if it is a bit dizzying but I still wonder why I’m not jumping on the wagon and getting more and more involved as well. Why am I not more actively pursuing these sorts of things too? I think of the things I “should” be doing, but those “shoulds” are not my deepest desires at all. They are what I see everyone else doing. These shoulds are what I compare myself to when I read about what others are up to in their daily lives or what my family and real life friends are doing.   It’s all so very busy. It’s all so active. I sometimes feel that I really ought to be doing much more… and more… and more. Maybe that’s what other people enjoy or need, but that is not me or what I can actually handle. Surely there is still room in this world for the simple life. For a slower pace to things.”

That is my definition of success. Living a simple, beautiful, peaceful, happy life. A slower paced, sweeter life. The name of my blog reflects this. SONNOLENTA. It’s Italian for sleepy, or soporific. “Lenta” on it’s own means “slowly”. I don’t want to live my life at the speed of sound. I want to linger in the moments and absorb everything that my senses can, which is an immense lot. I was raised in a world which taught me to run, not walk. And then to fly, not run. I’ve been taught that I must make a lot of money, have a big house, a nice car, nice clothes, and do socially-expected things. The problem is, I tried to achieve those things, because I felt like it was my only chance at acceptance. Isn’t it such sad testament that I felt like my Mother would only find me worthy of love if my house was a certain size, maintained in a certain way, and with me inhabiting it- also kept and maintained in a certain fashion? What about who I am? What kind of person I am? What I contribute to this world? These things don’t matter? Even if they are slight things in the grand overall scheme, I believe that we all have something to contribute. It’s just that so many of us are invisible because we do not contribute in neurotypically loud, societally acceptable ways. 

In the last few years since my Autism diagnosis, I’ve experienced a dramatic shift in every aspect of my being. I’ve been able to cast off the barrage of demands placed on me by a society that demands far too much. I have started becoming more connected with what I can only describe as my “true self”, and have found myself determined to purposefully swim against the neurotypical tide, rather than flow with it. I’m more confident and at ease in my decisions, whereas before, I questioned every single one and methodically dissected them, stacking my options neatly on some warped set scale of acceptability. To be exposed to American media and advertising is to be exposed to a message of “more is more”, “more is better” and possession and consumption are worthy goals. It is all about having things, not about having experiences. I denounce this, and on a daily basis, actively work to disconnect myself from a materialistic world view and replace it with one that is more spiritual. Not religious, that’s a whole other topic of it’s own. I am not a religious person, despite being raised in a very strict Baptist setting.

I want to live simply. I want to live within my own means. I want to have minimal financial demands so that I can enjoy the rest of my life, rather than feeling like I am doing nothing other than pursuing dollars or material things. And the best part of this is, that this type of life is more advantageous to my neurology. The peaceful stillness, sitting here. Writing this on an old laptop, on the porch of the small house we are currently renting in one of the quieter corners of South Carolina. Away from the populated centers, off on the edges of civilization. This quietude is what nourishes me, not continuing to live my life forcing myself to meet ridiculous expectations and continually examine my own life’s fruitfulness in comparison to a shiny happy Autism profile I read online.

The next time you read a profile of an Autistic person online, ask yourself… how does this story make you feel? Again, I’m not diminishing the achievements and experiences of the Autistic person in these stories, but I am suggesting that the writers, allies and advocates who put forth these stories ask themselves:

Am I writing only about “well known” Autistic people? Is is possible that I should dig a little deeper, and expand my view?

What do I hope to achieve by publishing this story?

Am I focusing only on a tiny percentage of the Autistic community through this story?

Is this story beneficial to Autistic people, or is it merely a perspective piece for neurotypical people?

Will Autistic people read this story and feel inspired, or will they feel even more lacking?

Am I only featuring Autistic people who are successful by neurotypical standards?

Should I redefine what I consider to be as “successful”, “positive” or “outstanding” in relation to Autistic people, so that I can cast a wider net and portray a more diverse portrait of Autistic people through my writing?

Am I only portraying those deemed acceptable through the lens of white privilege?

Am I subconsciously marginalizing the vast percentage of Autistic people because I don’t feel that they are “accomplished” enough?

How do I define “accomplished”? Can I shift my paradigm to see the daily triumphs of Autistic people in a way that doesn’t stack them up against neurotypical expectations?

I don’t know if those who are writing the stories of Autistic people actually know how many of us feel. I don’t know if they care, because it’s highly likely that the stories aren’t written for our consumption, anyway. But the fact of the matter is, that we feel compelled to read them, because they are about Autism. They are presenting a facet, even if slight, that connects to our personal narratives. We read them. Sometimes we read the same story over and over again. So even stories not written for us, are indirectly about us. And they affect us deeply, whether we realize it or not.

For many of us, they echo the internal struggles we have experienced and the constant push and pull of neurotypical expectations. For me personally, they represent the tidal forces I am fighting to swim against, on a daily basis. I believe that I would not feel this way if a more diverse representation of the Autistic experience was shared, not just those cherry picked for their wagers of neurotypical ideals. We want acceptance, we want inclusion. One way for this to happen on a greater scale is through the actual stories that are written and passed down. Change the narrative, change the direction.

AWN Blog Talk Radio Show: DIVERgent: when disability & feminism collide

848516741I’m the newest member of the Autism Women’s Network DIVERgent committee, and this was my first experience with blog talk radio! Since I don’t speak very well in real time, I opted to send in some statements and responses to be read on the air. Writing is the best form of communication for me, but even then I am typically unsure of my words and their content/intent.

Listen to the show, below- or at this link. (Blog player may or may not show up for you- if it doesn’t, click the link above!)

Online Health Radio at Blog Talk Radio with AWN Radio on BlogTalkRadio

DIVERgent committee members discuss the goals and importnce of inclusion within feminism and where women in the disability community fit in.

Mission statement: DIVERgent works to change how disabled women are commonly perceived within society while challenging the myths of our inferiority, both as women and as disabled people. We explore the interactions between sexism and ableism within both disabled and nondisabled communities. We seek to offer perspectives on gender and disability by emphasizing non-traditional femininity and non-traditional feminism.

 

I’m Not Sick: A rant about neurotypical privilege.

Sonnolenta:

All of these thoughts, so relevant to my daily movement through this world.

And even more so, now that my Son has begun his own Autism diagnosis journey. I spend even more time thinking about how he will navigate his own path from here, and into his future.

Originally posted on Feminist Aspie:

I am autistic, and I’m sick of neurotypical privilege.

I’m sick of hearing that I and others like me can’t live a full life. We can, and we do. We just need a little help sometimes.

I’m sick of being told my experience isn’t real, that I’m just an attention-seeker or a special snowflake, or having those accusations directed at my parents.

I’m sick of the myth that vaccines cause autism. And even if that were true, I’m sick of people avoiding vaccinating their children because they’d rather they get ill or even die than be like me.

I’m sick of autism being compared to cancer and AIDS. The latter two are diseases which can and do kill. Autism is not.

I’m sick of hearing that autism is an “epidemic”. The reason that more people are diagnosed with autism now is that there is so much more awareness regarding autism…

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I’m just as confused as you are. And that’s OK. [Neuro-Friendly Life: Day 8]

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Image of an ancient stone sun dial, with a sun and a moon. The lines between night and day are blurred, as it is a double exposure. Image © Sonnolenta

 

It’s OK to not be able to keep up.

It’s OK to be overwhelmed.

It’s OK if you can’t meet your goal.

It’s OK to give yourself a break.

It’s OK. Really. I keep telling myself these things. I keep waiting for them to sink in, and to actually feel like it’s OK. There’s no one forcing me to feel this way, but years spent under the realm of parental influence combined with my own eager learnedness has produced this perpetual mindset. I am my own worst enemy. I am my harshest critic.

I’m not writing this blog from the shiny happy new-age guru trying to get you to feel juicy transcendent zen feel-good vibes. I’m just as confused as you are. I’m just as desperate for acceptance, understanding, awareness, happiness… as you are. Some days are better than others. I battle through the minutes of most days. I don’t have all the answers and I never will. But I feel like each day I get a little bit closer to my constantly changing goal. Some days I don’t even remember what my goal is. I’m too busy beating up on myself to recall.

I’m trying to learn to be my own best friend. I’m trying to learn to be easy on myself. It’s been suggested to me on numerous occasions that I treat myself as I would treat the little girl I once was. I was urged to dig out old photos and scan them, or keep them in a special place so that I could look at them and try to remember being that innocent little girl. The truth is, that I would never treat a child the way I treat myself. My inner voice is harsh, cruel, demanding, unrelenting and unforgiving. It’s a voice that offers me no respite, just regular flogging, echoing with the sonic crack of the whip every time I begin to fall out of line.

My days are full of “shoulds”. I should be doing that, not this. I should have done THAT, but instead I did the other. I should have. I shouldn’t have. I wish to no longer be a slave to the long lists of shoulds, whether they are randomly sitting in my mind, or carefully written out into long lists on legal pads or post-it notes. Why are my days an endless chain of what should or should not be?

In all truth, I’m doing too much. It’s a quandary that I’m not likely to depart from any time soon. The complexity of my life situation and responsibilities sits perched high atop a rigidly enforced tower of should. Guilt can be spelled out of four letters of my middle name, which is Giulia. The sun is not yet kissing the horizon of dawn, and I already have a long ticker tape of things I feel guilty about in the wake of yesterday. I awoke in a startle of panic, afraid that I had misplaced an important packet for the mail. Or that I had forgotten to turn off the garden hose. Or that I had not hugged me Son ten times. The mundane heartbeat of life has enough force to wake me from a sound sleep.

I need to take fifty steps back. I need to lessen some of my responsibilities, I know this. But which ones? How do I choose what I can put aside on the back burner? Everything feels so necessary. All things seem to be absolute and pertinent to each day. Dawn is slowly moving upward on the horizon. The sky is tinged with pink, the night birds have gone silent, and the fireflies are dimming. Everything comforting that I love about the night is being burned off by the encroaching rays of the sun. Another day is here, and the cycle begins anew. I need to break that cycle.

But I just don’t know how.

I don’t have all the answers, and I never will.

What I do know is that the neurotypical world is a place that moves too fast. It’s too hard, too loud and too crowded. It’s sharp, bitter and angry. It’s acidic and sad. It’s constantly trying to pull me into it, reaching out with tendrils that pull me towards it’s cruel center. I don’t want to be part of that world. I want to live in mine. I’m tired of trying to exist in that world. I want to exist within my own safe microcosm. I’m tired of trying to fit in. I want to feel warmth and kindness.

I leave you with this gem:

“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”

― Rainer Maria Rilke

It’s not a sin to be awkward.

Sonnolenta:

After several years of constant difficulties my Son was having in public school, along with severe bullying from other students, I took him out of public school and we began homeschooling.

We’re about to complete his first year, 6th grade!

One of everyone’s greatest concerns since I started homeschooling was that I “made sure to have him around lots of other kids his age” and “properly socialized him” so that he didn’t become… AWKWARD.

Yes, that awful word, AWKWARD. So this blog from Chavisory really hits home with me! I just spent the last hour typing up an addendum to my Son’s enrollment packet to the local Behavioral Pediatrics unit, and I actually just spent a great deal of time writing about his public school experience, bullying, his sensory issues, and why I chose to finally homeschool him.

“A homeschooled kid probably isn’t awkward because they were homeschooled.

 

They are probably homeschooled because they are awkward.

 

Because they have probably already been forced out of the school system by bullying and abuse or discrimination, or because the school couldn’t or wouldn’t meet their academic needs.

 

(Being academically precocious: also not a sin.)

 

I mean, mandatory, universal public school attendance wasn’t even a widespread thing in this country until the early-mid 20th century. Were we really just a nation of incredibly awkward people until the 1920’s or so?

 

Even if it really were homeschooling that caused awkwardness, I would so much rather a child of mine be awkward than a whole lot of other things that are nowhere near as socially stigmatized as awkwardness: Mean, bigoted, superficial, callous, snide and scornful towards people different from or more vulnerable than themselves.

 

I’ll take awkwardness any day.”

Originally posted on Chavisory's Notebook:

I’m was in the office at work with my boss and a coworker, and I do not even remember how the topic of conversation has turned to public schooling vs. homeschooling.  But it has.  My coworker starts in on an anecdote, and I have a bad, bad feeling about where this is going.

“We had a homeschooled girl in my high school chemistry class.  She was like 12.  She was just so far ahead.”

(Maybe not.  Sharp intake of breath.  Slightly too-long pause.)

“But she was so awkward.  And it made the whole class awkward, and it was just awkward to have her there.”

And here we are.  At the moment in which, prior to this, I had actually thought that my acceptance in this place, to these people, wasn’t based on me passing myself off as the right kind of person instead of the wrong kind.

The awkward kind.

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