Autism Acceptance 101: What’s The Big Deal? [REBLOG]

Originally posted on Feminist Aspie:

The previous post in this series, “Functioning Labels 101: What’s The Big Deal?” can be found here. Once I’ve established that I actually will write a regular series of these posts and not just abandon the idea, I’ll create a tag.

Today, 2nd April, is the UN’s annual World Autism Awareness Day; by extension, the whole of April is Autism Awareness Month – or, as you may have heard it being called by autistic activists and our allies, Autism Acceptance Month. You may also have noticed that many autistic people have reacted against certain “Autism Awareness” campaigns. So, what are the problems with Autism Awareness Month as it currently stands? Why “acceptance”? What can you do this April to help autistic people in a meaningful way? Welcome to Autism Acceptance 101.

Surely more autism awareness can only be a good thing?
Not if the only things being brought to…

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The Gift of Metamorphosis…

Yesterday, I witnessed what I can only describe as a small miracle. While watering my garden, I came across what I thought was a bizarre, dying insect. A freakishly large, fuzzy creature. I sat and watched it for a while, couldn’t figure out what it could possibly be, and went inside to retrieve my camera.

Upon returning five minutes later, I knew exactly what I was looking at- the wilted and “dying” bug has suddenly sprouted beautiful green wings, slowly unfolding along purplish spines. I had found a Luna Moth- something I’ve always wanted to see, but have never had the luck. Not only did I find a Luna Moth, but I was watching something rare and wonderful- a freshly-emerged male Luna Moth. (the male moths have the distinctive antennae, while the female’s are smaller and not “feathered”).

I watched him for several hours, and took about two hundred frames! His metamorphosis occurred in approximately twelve hours, although I am not sure at what time last night he ultimately took flight. Finding and observing this moth has been a transformative experience for me. I know that I may never see another Luna Moth, so I devoted several hours yesterday to just sitting and watching, photographing (and protecting) this moth from the many possible predators who might have disturbed his short life. Luna Moths are born with no mouth. They do not eat, and live only for about a week. How sad that something so exquisitely beautiful is so ephemeral. The details on his wings looked like the finest silk embroidery, and I frequently got lost in the delicate morphing of purples, greens and yellows which made up his fluffy body, legs, antennae and wings.

I’m so grateful for my ability to see the tiniest details in my life. Even without realizing it, my eyes constantly scan my environment in great detail. I’m the person who can find a needle in a haystack. I’m the person who doesn’t miss a beat. If I wasn’t who I am, neurologically, I might very well have never seen this moth, and completely missed this opportunity.

This morning I did some research on Luna moths and found some interesting perspectives.

“Throughout history, butterflies and moths have frequently been shown as symbols of rebirth, regeneration, and renewal – even depicted as a spiritual guide through transformation to a new self.  They are the archetypal example of the soul itself, a creature with a unique gift endowed by nature to completely alter its physical form.  Their ability to undergo metamorphosis and emerge as an entirely new being, from the ground-restricted caterpillar to the free-flying winged beauty is certainly a wonderful metaphor for hope and transformation.

A particularly serene and spectacular representative of Lepidoptera (the order of insects that includes moths and butterflies) is the Luna moth (Actias luna).  As one of the largest moths in North America, with a wingspan that can reach 4.5 inches, Luna moths are truly distinctive, possessing a gorgeous translucent lime green color, long narrow hind wings and a set of eye spots to confuse predators.  Luna moths are in the family Saturniidae, which are also known as the giant silkworm moths, for their size and the silk cocoons they make.” (Credit- Crystal Cockman)

Luna Moth lore abounds with fascinating symbology, and the Luna Moth as animal totem is a most positive recognition:

“Luna moths are associated with intuition, psychic perception and increased awareness. My own opinion is that sightings are so rare and so striking that whenever we see a Luna moth our thoughts seek out some event in our own life to create meaning. More generally, in many cultures butterflies and moths are thought to symbolize human souls, rebirth, transformation… From Bulfinch’s Mythology “The Greek name for a butterfly is Psyche, and the same word means the soul. There is no illustration of the immortality of the soul so striking and beautiful as the butterfly, bursting on brilliant wings from the tomb [pupa] in which it has lain, after a dull, grovelling, caterpillar existence, to flutter in the blaze of day and feed on the most fragrant and delicate productions of the spring. Psyche, then, is the human soul, which is purified by sufferings and misfortunes, and is thus prepared for the enjoyment of true and pure happiness.”

Psyche’s story is of a young woman who became the lover of Eros (Cupid in Roman era), who was with her only during the darkness of night. For the forbidden folly of viewing his sleeping body by lamplight, she was tasked by the Goddess Aphrodite (Eros’ mother, named Venus in Roman era ) with four near-impossible challenges. Upon completing these, she was given the drink of immortality by Zeus, and rejoined Eros. In art, Psyche is often portrayed with butterfly wings while Eros is shown with feathered wings.” (Source: Maynard Life Outdoors)

Contemplating hyacinths, taking time for myself…

I like the way the world looks from behind my camera lens. I always have. It’s what led me into studying photography in the first place. Long hours spent in the darkroom, time spent in a safe, dark cocoon. Life moves at a speed lately that I struggle to reach out and define. Days blur into weeks as I even question whether or not time is progressing in suspected linear fashion, or playing the trickster to my mind’s eye.

The world stops when I raise my camera. I am gifted with tiny pieces of infinite universes of possibility which I can only hope to capture. I’ve always been drawn to photographing flowers. When I was in photo school, I took a fine art/exploratory photography course and spent the entire year photographing flowers. From their pristine beauty to their ultimate decay, I delved into their intricacy in all formats, processes and methods.

The subtle shifts of the days marching cyclically through the changing seasons, the barren twig becoming the budding flower and thus the ultimate prize. I long to capture all of these things, and I don’t even cast bother to whether or not others will view or enjoy them. They are my moments, they are some of the only time I truly steal for myself amidst the chaos of recently cacophonous days. They are the silence encapsulated, which I long for.

During this long month of April, we are continually reminded of all the manners in which Autism detracts and weighs heavily on us. We feel gravity’s pull on our disability like the heaviest armor. Time is fleeting. Time is the only thing in life that we can never get back, the only thing that we can truly lose. Time is amorphous in it’s distillation of our fears and joys. I desire more of that joy, despite it’s ephemeral nature. I live life through an Autistic lens, with every action, every thought bent and changed, like light following the simple laws of physics.

Some days I feel elation in my difference, the difference is in the details. I smile at the infinite opportunity that appreciation of the mundane and unnoticed seems to bring. I eternally feel like I carry a secret, a devil in the details, a notion of things working on a smaller scale that other eyes simply pass over for lacking.

Flowers bear stories, and this I adore.

(From Wikipedia)

In Greek mythology, Hyacinth was given various parentage, providing local links, as the son of Clio and Pierus, King of Macedon, or of king Oebalus of Sparta, or of king Amyclas of Sparta, progenitor of the people of Amyclae, dwellers about Sparta. His cult at Amyclae, where his tomb was located, at the feet of Apollo’s statue, dates from the Mycenaean era.

In the literary myth, Hyacinth was a beautiful youth and lover of the god Apollo, though he was also admired by West Wind, Zephyr. Apollo and Hyacinth took turns throwing the discus. Hyacinth ran to catch it to impress Apollo, was struck by the discus as it fell to the ground, and died.[3] A twist in the tale makes the wind god Zephyrus responsible for the death of Hyacinth.[4] His beauty caused a feud between Zephyrus and Apollo. Jealous that Hyacinth preferred the radiant archery god Apollo, Zephyrus blew Apollo’s discus off course, so as to injure and kill Hyacinth. When he died, Apollo did not allow Hades to claim the youth; rather, he made a flower, the hyacinth, from his spilled blood. According to Ovid’s account, the tears of Apollo stained the newly formed flower’s petals with the sign of his grief. The flower of the mythological Hyacinth has been identified with a number of plants other than the true hyacinth, such as the iris.

The Death of Hyacinth, by Jean Broc:

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A chaotic week… when your homeschooled Autistic child asks to go back to public school

I’ve been homeschooling C for just about two years. I know that homeschooled kids go through phases where they start to question their situation and often want to return to public school, but I didn’t think that my Son would be one of those kids. I was wrong!

Last week, we began having a home education crisis that turned into autistic meltdowns, long periods of silence, much time spent alone and worried and then ultimately landed us both sitting in the lobby of the local middle school, having just registered for attendance, and waiting to meet with the guidance officer and school psychologist.

C remained quiet and didn’t speak out about his feelings for two days. I thought he wanted to return to public school. When I went to register him for public school, he didn’t appear/speak/act in a manner contrary. For all intents and purposes, I thought I was acting on his wishes and putting into motion his expressed desires. I’ve read a lot of articles about what parents should do when a homeschooled child expresses the desire to return to public school, and in the majority of cases the best advice is to allow it to happen, especially if the child is older (C is almost thirteen).

The good thing about our meeting is that if C does decide to return to public school in the future, he will have supports. He will have a “Student Support Team” (SST), which is basically all the teachers, guidance and school psych coming together to make sure the student has what is needed in the classroom, that the teacher is aware of the disability, and that accommodations if needed, are made. They would evaluate C’s school experience under the SST and determine if it was adequate. If not, they would explore the IEP, or Individual Education Plan.

For a few days there, we were in a state of turmoil. A routine we both had established over the course of two years was possibly going to be undone. My anxiety levels maxed out as I remembered the constant strife C experienced in public school as a result of his sensory processing sensitivities, inability to learn in the school environment, bullying and the depression that accompanied it, and a long list of other worries. They came hurtling back into my present mind and I was gripped with old fears and inconsistencies.

Not wanting my state of mind to worry or upset C, and have it alter his decisions about anything, I tried to hide what was going on with me. I did the best I could to minimize everything, and even closed down my business for a while because I knew there was no way I could handle those responsibilities on top of the educational crisis we were experiencing. Closing down the business allowed me to remain more calm, the recover more quickly from the meltdown, and to focus all of my energies on moving forward.

And move forward is what we did. When back from meeting with the school, C returned to his homeschool routine. I allowed him time to calm down, and “sleep on it”. The next afternoon, we sat down at the kitchen table with a large drawing pad, and began writing down lists of pros and cons for both public school and homeschooling. What we found was that the pros for public school were the cons for homeschooling, and vice versa. The list of homeschooling pros went clear off the page.

Once we established that homeschooling was the better choice, we had to figure out how we could incorporate some of the pros of public school- into the homeschooling experience. C’s main complaints about homeschooling are that he would like to be around more kids. He is normally reserved and quiet, and likes to be alone. But in the last few months, he has expressed the desire to make friends, do activities and be around other kids. In response to this, I’ve suggested activities or clubs. But his reply is usually, “I’m not interested in that”, or “I’m afraid to go”. Or just an abrupt “NOPE”.

I told him that I am willing to do whatever it takes to make homeschooling work for him, but that he has to be willing to consider some of the things I suggest, and not pre-judge the activity. He agreed to be open to this, as long as I attended the activity or was in close proximity to it. So we began going back through the list of things he had previously been averse to. On Thursday, he had his weekly BB/Sharpshooting club meeting. Friday, he attended the chess club for the first time. He was smiling and enjoying himself during the individual game, but he became very upset and with red face, when they switched to team play. I talked to him about what happened, and I’m going to talk to the coach about it next week.

On Sunday, C was invited to the shooting range by his BB/sharpshooting coach, which was an awesome experience for him. C loves sharpshooting and it teaches him a lot of good skills. Patience, safety, relaxation, focus, teamwork, sportsmanship… We had a great day at the range yesterday.

This week, he’ll try out two new 4H clubs- organic gardening, and junk drawer robotics.

Flexibility is sometimes hard with two neurodivergent people in the house. We need a lot of outlets to relieve anxiety, or just to have time alone. Last week we spent a lot of time watching the cows next door, walking in the woods, and working on the garden. That’s not a flower meadow- that’s our lawn!

“Enigma”, a beautiful eyeshadow to benefit Autistic Self Advocacy Network. #PeopleNotPuzzles #Neurodiversity

Something I’ve been working on for “Autism Awareness” month…

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April 1, 2015:

Today marks the start of “Autism Awareness” month, a time of year when everywhere you look you’ll see the words “light it up blue”, puzzle pieces, and strong statements about Autism from controversial charity, Autism Speaks. 

You probably think of Autism only in terms of how it affects children, not ever considering that there are Autistic adults out there. Even more likely, you don’t realize that Autistic adults are often nothing like Autistic children, and that the Autism spectrum is vast and varied. I speak from experience. I am an Autistic adult. And my being outspoken about this, as other Autistic adults commonly experience- is often met with a great deal of misunderstanding, and ableist attitudes.

The definition of Enigma is a person or thing that is mysterious, puzzling, or difficult to understand. The word enigma usually bears a negative connotation. This color is called “Enigma” as my way of drawing attention to the misunderstood plight of the Autistic adult, and to shed light on the lack of supports that most Autistic adults face. 

Autism Speaks relegates less than one-quarter of 1% of their donations towards providing support and services for adults on the Autism spectrum. You read that right- one quarter of just one percent, a figure taken directly from their publicly released financials. Most have no supports at all, and many are simply misdiagnosed. Autistic adults have the highest suicide rates of any disabled group. Most Autistic adults are unemployed, or have very sporadic employment. 

50% of this Enigma’s sales for the month of April will be donated** to the Autistic Self Advocacy Network (ASAN), an organization which the Autism community collectively would like you to be aware of, and to support- instead of Autism Speaks (learn why!)The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. We work to empower Autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the Autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!

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Autistic adults don’t want to be seen as enigma. Stop the stigma. Your awareness that we exist is not the same as acceptance.

Understanding requires a shift in perspective, and a move from the realm of stigma and pathology into the recognition of the individuality and unique gifts we all bear. Neurodiversity is a beautiful thing. 

Listen to Autistic voices. Check out the following hashtags on Twitter: #boycottAutismSpeaks #toneitdowntaupe #lovenotfear #walkinred #peoplenotpuzzles #actuallyAutistic #neurodiversity

** 50% of April sales of Enigma will be donated to ASAN. After April, 25% of sales will continue to be donated to ASAN. 


Color Description: “Tone it down taupe” with borealis sparkles, representing the spectrum of neurodiversity. An easy to wear shade that you’ll reach for every day.

SHOP for Enigma, as well as my other Autism Acceptance shades- “Neurodivergent” and “#LoveNotFear”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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