They’re here! Because you demanded it, and because I love you – more neurodivergent/Autistic Valentine’s Day cards! Please feel free to use and share these as you will. Just do remember to give me credit, please ❤
[Image description: A series of six Valentine’s Day cards featuring bright watercolor backgrounds with complimentary coloured bars containing white text. The cards read:
- Your stims are stupendous; your happy makes me happy
- I would talk on the phone for you; please don’t make me
- You’re on my red list; let’s get out of here
- I want to know everything about you; do you mind if I take notes?
- I want to spend time in parallel existence with you; let’s be alone together
- Your echolalia is enchanting; let’s back and forth
End image description.]
Tag: neurowonderful
Is it possible to become “more autistic”? Why is my child suddenly having more meltdowns? What is autistic burnout? What causes it, and what does it look like in Autistic children and adults? What can you do about it? Answers to all these questions and more in this episode of Ask an Autistic!
In case anyone doesn’t know or wants to know more about autistic burnout, since I have mentioned it a couple of times in the last few days, re: state of myself right now.
The Celebration of Autism
Thank you for the introduction. Hello friends, allies, and fellow a/Autistic people. The tone of my piece will be a little different today, but I’d like to start by sharing a piece of my story.
In my earliest memory, I am standing in a sunbeam. I move my hands so that the light scatters, becoming a golden glow, and watch the dust particles float like little cosmos and galaxies. I am three years old when a daycare employee grabs my fluttering fingers and squeezes so tight that tears make the world go dark.
I am four years old, and I hide under the table when the clatter and chatter of Christmas dinner becomes too much and grinds against my skull. A relative grabs me with their grown up hands and shakes me, and they hiss at me to sit in my seat and not move, that my bad behaviour is ruining everything. I have to bite my tongue to keep from moving.
I am five years old. I deliver all the lines along with my favourite film characters and sing at the top of my lungs, entire Disney scores by heart. I sing for my peers, but teacher says no singing outside of music class, so I recite my favourite scenes for them instead. No, teacher says, Use your own words. People don’t like to hear about movies, they can just watch them on their own. Are you dumb? Just use your own words.
I am six years old. I love to read. I read everything I can get my hands on, devouring books many grade levels above mine, but I have no friends. My teachers don’t understand me. My behaviour is attributed to laziness, poor discipline, bad parenting. It doesn’t occur to them to ask why I strike out, why I steal the other kids’ lunches, why I bite and cry and hide under tables. They just take away the book and pull me across the floor and force my small body into the carpet.
I am seven years old. I have one friend. Her name is Julie. She sits beside me and watches the teacher lean over me to still my happy flapping. Later, as we laugh together, she reaches over and stills my hands. My heart breaks. Just be happy like the other kids, she says. After our first sleepover, she tells me that I am too weird and my family is too weird, and that her mother said that I am not allowed to sleep over until I get better.
I am eight years old. I sit alone every lunch break and read books. Sometimes my classmates ask me if I want to play, but run further away every time I approach. I stop looking up when they laugh and call my name. The lunch monitor tells me that it’s the quiet kids who have violent thoughts, and that only disturbed people want to be alone. She makes an older student sit next to me. He punches me in the stomach when the lunch monitor turns her back. Anger replaces sadness, but it is myself I hurt in my anger.
I am nine years old when I realize that people don’t like me. A teacher tells me that I don’t know how to talk to people, but no one will tell me how to do it right. I offer up facts about animals, drawings of my favourite scenes from movies, long educational monologues on Ancient Egypt. One day an adult snaps, turning on me with sharp words. Shut up, they say, just shut up. No one cares. You are so annoying. I begin cutting myself off mid-sentence and apologizing for my passion. I feel the fight start to drain out of me.
I am ten years old when I realize what people think of me. My peers call me special, “in the bad way”. Short bus. Speddy. I am ten years old when a teacher asks me if my mother dropped me on my head, that any child could do this easily. I am ten years old when a trusted adult tells me that the way I move when I am excited makes me look like the R word, that real people don’t move like that.
I am ten years old when I try to end my life.
The only words I had had for myself were broken, stupid, freak. The R word. No one was there to tell me that there is nothing shameful about being different, that I am not less. That disability is not shameful. That there is nothing wrong with learning differently or being in special education. If I had had words like executive dysfunction, like meltdown, like sensory overload, like Autistic, I believe that I never would have tried to hurt myself.
It would be another long, dark ten years before I discovered the a/Autistic community. When I finally learned this truth about myself- that I am not a broken neurotypical person, that I am a whole, if bruised, Autistic person, my world was more than changed. It was a whole new world, and it was populated by people like me. Now I am closing in on twenty-five years, and I’m still working on accepting my disabled, chronically ill, Autistic self.
Now I wade back into the hate and the ignorance to spread understanding, trying to advocate for the children who still have a chance and lead a/Autistic adults home. Advocacy is my life, and the message I try to spread is one of acceptance, inclusion, and neurodiversity. This is more difficult than it may sound, because in many ways, I am still that child. I am in the same situation as many autistic adults- I am unlearning self hate and relearning how to be my true self.
When it comes to celebrating Autism, there are those who stand nearby, protesting, holding conditions and waving caveats. Autism acceptance is alright- for some. Sure, we can celebrate Autism- or a few specific, socially-acceptable ways that Autism can present in certain people, in certain situations. Sure, we can celebrate a/Autistic people’s strengths- in as far as those strengths are potentially profitable to capitalism. Sure, love and inclusion may work for those “quirky”, “high functioning” people, but real disability is too tragic, too messy and too uncomfortable, to ever be celebrated. Maybe tolerated. Never celebrated.
You have to watch out for tolerance. It’s not love or understanding that most of us learn for people who are different, it’s tolerance. Not how to accept, but how to put-up-with. There is no love in tolerance. Tolerance is inequality. Tolerance says, “Who you are is wrong and different, but I, as the right majority, will conditionally allow your unpleasant existence to go on”. Acceptance says “Who you are is a valuable, precious human being who deserves the same respect, rights, and opportunities as anyone else”.
For many, the concept of Autism acceptance is a stretch out of their bubble of privilege that they are not willing to make. The thought of accepting a/Autistic people exactly where we are, as we are, disabled and human, challenges and joys alike, is too much. They are too deeply entrenched in the culture of cure and its panic-perpetuating tragedy rhetoric. To these people, to these people who try in vain to separate the person from the neurotype, to cut out the autism, to mould a non-autistic child from an autistic one- the idea of accepting a/Autistic people as we are is outlandish. To these people then, to celebrate a/Autistic people, and even Autism as a neurotype, is disturbing.
The Mexican poet, educator, and humans rights activist Cesar A. Cruz said that art should comfort the disturbed and disturb the comfortable. Well, the a/Autistic community is uncomfortable, and more than that, we’re in pain, and the comfortable have all the power in the world.
Our resistance is small but mighty, made up of thousands of little lights, each flame carried by an a/Autistic person and protected by our allies. It’s for that reason that I choose to be art, and why, when I was asked to speak on “the Celebration of Autism”, I jumped at the chance to comfort and to disturb. It was only after I accepted the honour of speaking here today that I realized I wasn’t sure how to talk about celebrating autism. I had to decide first what celebration means. I had to think about what it meant to go beyond accepting and to reach celebration.
The celebration of Autism is something so powerful and so subversive, it makes people uncomfortable. It forces people to reconsider what they think they know, to question what the experts are saying, to look to the voices that should be elevated above all others- the voices of actual a/Autistic people.
The celebration of Autism transcends the shadows of ableism and the silence of tolerance. Celebration pulls first-person autistic experience and joy into the limelight. The celebration of Autism is the most powerful tool we have to hold back the dark of indignity, and to spread our message. In a world dark with pity, fear, and hatred for people with disabilities, celebration gets people’s attention. Celebration is radical.
To be able to celebrate parts of your identity and life experience, even if your identity is a marginalized one, even if your life experiences have been fraught with challenge and societal oppression, is not a right afforded to disabled people. We are the largest minority amongst humans, a minority group to which a person of any race, religion, nationality, gender or sexual orientation may belong, and the only minority group that any person can become a part of at any time.
To many of us, our disabilities are vital and intrinsic parts of ourselves, of our identities, the importance and meaningfulness of which cannot be denied. For many of us, disability is as an important aspect of our self as our race, religion, nationality, gender, or sexual orientation. But for too many people, disability is the last holdout of shame, of intolerance, of outright hate. Some of those people are disabled themselves and have internalized a lifetime of ableism.
Once I decided what constituted celebration of autism and how to define it and its benefits, I had doubts that I am qualified to talk on the subject. I’ve talked the talk, but have I walked it? Being autistic is to be different, and disabled. There are hard parts about being autistic. Being autistic in a world built for the non-autistic majority is tough, and it can be tough on us, and it can wear down on our self esteem. It can make it hard to see our lovely parts. I wondered in what ways I celebrate autism. I started looking at my life and thinking about the other a/Autistic people I know whose lives touch mine.
My work on my blog and through my Youtube channel puts me in contact with thousands of strangers. Youtube comments, questions to my blog, facebook comments, e-mails, messages. I would say that about half of these messages are from parents. I would say that the other half are from a/Autistic youths and adults who have found my videos and, for the first time, have words for what they have lived and the knowledge that they are not alone.
There are so, so many a/Autistic adults out there who went misunderstood and misdiagnosed, or undiagnosed. Our understanding of Autism Spectrum Disorders has increased greatly, and now we know more about how Autism presents, particularly in under-diagnosed groups like autistics of colour, autistic women, and autistic people with co-morbid neurological conditions or mental illnesses. But even ten years ago, doctors and professionals didn’t know what we know now, and so generations of a/Autistic children were missed, misdiagnosed, slipping between the cracks to grow into struggling a/Autistic adults.
When these a/Autistic teens and adults reach out to me, every single one of them talk about how incredibly difficult it was to grow up undiagnosed autistic in a non-autistic world. All of them have experienced peer abuse; most have experienced parental abuse, whether intentional or not; most report traumatic school experiences, including public shaming, isolation, restraint, and psychological abuse; many have been taken advantage of by people thought to be friends or abused by a romantic partner; many report experiencing child sexual abuse, and autistic women are many times more likely to be sexually assaulted than non-autistic women.
All of them talk of the deep pain of growing up without insight or explanation into their neurotype or impairments, the only available conclusion to a disabled child being, “I am bad. I am broken. There is something wrong with me and it’s my fault.”
But when they do find us again- when they learn the name we have for the ways their brain works and when they find the a/Autistic community- the wrong explanations used to fill the gaps aren’t necessary any more. You’re not lazy, you have executive dysfunction.
Yes, you are “too sensitive”, but it is a real and valid neurological condition called sensory processing disorder, and it’s okay to make yourself comfortable. You’re not stupid or a selective listener, you have central auditory processing disorder and you learn differently.
You’re not an embarrassment or childish for moving your body in ways that feel good and keep you healthy, but look different than how other people move. There are others who move like you, who rock and flap and spin, who collect information and who echo words and who love passionately and all consumingly. That you are not alone is life saving information. Learning that you are not alone is worth celebrating. Surviving is worth celebrating. And welcoming people back is a community celebration.
When I am openly and unapologetically Autistic, when I live my life in the way that is most healthy and happy for me, I believe that is celebrating. Choosing to share my experiences with you as a way to spread awareness and understanding, and when I get to talk about what I like about being Autistic or about how a/Autistic people are important and worthy of love, that is a form of celebration. Probably the most radical thing I have ever done is make a list of things that I like about being Autistic.
I like how deeply I feel- when I love I give my whole self.
I like how I notice the details that others miss.
I like how I see patterns and make connections.
I like how I see music, bright and rhythmic, flowing shapes and colour.
I like how every good feeling is more, and so much, my body can’t contain it.
I like how I get to feel what it’s like to sing with your body and dance with your hands.
I like when the world shrinks down to my special interest, and for a time, I can make sense of everything, and everything is good.
Another thing worth celebrating, and the thing that I feel most excited to talk about, is a/Autistic culture. It surprises people, but a/Autistic culture exists. a/Autistic community exists. That second one may seem like an oxymoron to people who are still lagging behind and thinking of Autism as strictly a social impairment, as if a/Autistic people are just like non-autistics, or we could be, were we not missing the “social” and “empathy” pieces of humanity.
We design and wear t shirts that say things like “I love someone who is Autistic (it’s me)” and “Neurodiversity is natural”. We craft jewelry for Autistic pride, collect buttons, trade zines. We share stim toy recommendations and post reviews of chewable jewelry.
We make gifs of ourselves stimming, videos about our special interests, and photos of ourselves wearing the faces God gave us, and we share them. We write poems, record podcasts, draw comics, sew weighted blankets and make stimming jars.
We start organizations, like the Autistic Self Advocacy Network, and we have meet-ups and conferences, and we get together to protest and to advocate.
And when I think of what it means to celebrate autism, this is what makes my heart glow with pride and happiness. All of us, the a/Autistic community. Those of us who live loudly and those of us who lead quiet lives.
Those who still struggle with shame, and those who are spreading messages of self-care and acceptance. Those of us who always knew we were autistic and struggled that way, and those of us who didn’t know until later and have our own sets of challenges. Loving and accommodating ourselves and others. Being honest about our limitations and working around them. Finding others with whom to share stories, experiences, interests, and who can really understand. Owning our stories, our selves.
It’s not a perfect community- we are hurting, and the world is still hostile, and many of us are still entrenched in cure culture and hate, or can’t yet escape. But it exists. And that is worth celebrating.
Every autistic that finds themselves again as a teen or adult is important and should be protected. I love to celebrate with them and welcome them back. There will always be room for those of us still meeting ourselves, our wings wet and still weak, just trying out our first flaps.
But imagine this: Imagine if we were to raise a generation of autistic children who don’t have to re-learn how to just exist a/Autistic, who don’t have to cut through scar tissue to let out the pain, to clean out the old wounds underneath, to let them heal.
Imagine if we could raise a generation of a/Autistic children who never had to hide who they are, force themselves into something they are not, only to burn out when the dam breaks and the strain of the act is finally too much. Who never have to hear the words epidemic, crisis, tragedy, burden, or mercy killing applied to them again.
Whose humanity, whose personhood and competence is never compromised or in doubt, whose dignity and rights are respected. A generation of children who love and accept themselves, and who can celebrate all of the parts of themselves worth celebrating.
To my fellow a/Autistic people, today I encourage you to think of one thing about your autistic self that you can embrace, and work towards celebrating that.
To the loved ones of a/Autistic people, I encourage you to look at the a/Autistic person you love and see with eyes that can see the value, the potential, the joy. And no matter who you are, I hope that, today and every day, you will join in celebrating a/Autistic people, our culture, our experiences, and in making a better and safer world for autistic children and adults and our families.
Thank you.
1) Why did you choose your URL?
Way back in the heyday of Angelfire, when you chose your URL, you had to choose from a set handful of two-letter combinations and then your chosen handle went on the end. ‘ia’ was one of the options, so I chose that and made my username ‘mshadow’. The 21 is because I like the number 21 and because some websites I’ve created accounts with, iamshadow has already been taken.
2) What is your middle name?
I don’t give out personal information, but I will say that it’s old-fashioned. Like my first name, which a couple of you know, it’s a name people associate more with old ladies than people in their thirties. I was given it because there were people with that name a few generations back on both sides of my family tree.
3) If you could own a fairytale/fictional pet, what would it be?
I used to want a pocket-sized dragon. Common, maybe, but no less awesome for it.
4) Favorite color?
Right now, probably purple, but I have strong loves for peacock blue, duck egg blue, jade green and cool yellow.
5) Favorite song?
I don’t really have one? I have very eclectic tastes and have handfuls of songs I like in many genres. If I had to pick one I come back to a lot, even though I don’t listen to a lot of electronic music, it’d be Massive Attack’s Teardrop. It was on one of my Triple J’s Hottest 100 albums that I bought around the time I left school, and I found it soothing to listen to on repeat while I was writing, many years before I was dignosed autistic and learned that aural stimming was a thing. I still use it sometimes when I get anxious to mellow me out and calm me.
6) What are your top three fandoms?
Right now, Marvel/Avengers is my primary, but I dabble in Miss Fisher’s Murder Mysteries, CSI, Sherlock Holmes, Agatha Christie’s Marple/Poirot, White Collar, Welcome To Night Vale, and Endeavour/Inspector Morse/Lewis.
7) Why do you enjoy tumblr?
I love the fan content, especially the amount of visual media and meta.
8) Tag all 9 of your tumblr crushes (they have to do all 8 questions too who can do this if they like)
No obligation for anyone to do this at all (I rarely do memes myself), but people I love dearly and follow avidly on Tumblr include: @actuallyclintbarton @jabberwockypie @kath-ballantyne @randomyayness @neurowonderful @spiralstreesandcupsoftea @the-wordbutler @literalbookworm and @copperbadge
(Image description: A partial screenshot of a blog post. The title reads “How I reduced screaming and verbal stimming in my child with autism”, and below that is a colour photograph of a hand holding a rectangular plastic “clicker” device.)
[snip]
I don’t agree with everything this lady did, especially the correction of verbal stimming, but I think the basis of this is fairly good practice with any child. You reward good behaviors and correct unwanted behaviors, which can be done through time-outs, taking away something of value to the child, or simply ignoring them. People don’t like hearing about methods that sound like dog training, but, as a dog trainer, I’ve seen firsthand that the minds of dogs and children are pretty darn similar, and they can usually be taught in similar manners. In my child development class, we talked about how some speech therapists will utilize positive reinforcements to encourage speech in autistic children, basically training them to talk. They started out rewarding any noise, and then slowly specified to rewarding words, and then rewarding sentences. The clicker seems awful, but it’s actually a good tool to phase out food as a reward, while still giving a reward. This may have been a really old method, but it worked. I don’t think this is an attempt to “cure” a child, but to effectively teach them more appropriate behaviors, like communication. Personally, I would think it’s really important to teach effective communication, for the sake of the child. Obviously, the child needs something, they’re trying to communicate something, but can’t do so in a way that their caregivers can understand. Is it so wrong to teach children how to express themselves so that they can fulfill their wants and needs?
I’m going to go ahead and be blunt here.
Autism Two Ways: What You Can Expect Based on Your Functioning Label
low-functioning: people literally think you’re incapable of understanding the world or forming thoughts or opinions. They believe you throw “temper tantrums” for no reason, that you’re purposefully violent, that you’re incapable of love. They think they have the right to speak for you without making an effort to communicate on your level. They decide what your quality of life is like for you, and will urge you not to have live-saving surgery. From the moment you’re diagnosed, your doctors, your family, and the entire world will treat you like a horrible burden with absolutely no future to be had. Assuming they don’t just throw you off a bridge.
high-functioning: people think you don’t have “real” autism and should therefore have no problems. They will go out of their way to deny you services, declare for you what you’re capable of dealing with, and possibly even undiagnose you based on knowing you for all of ten minutes. They think you have no sense of humor, that you can’t understand sarcasm, that you’re always literal and that you’re a math genius who never utters the words “I love you.” They will deny your right to have any opinions on autism, because you’re not like their brother/sister/child/whatever. From the moment you’re diagnosed, expect therapy. Lots of therapy. And the constant creeping sensation that you’re failing everyone by not being more “normal” because hey, you’re high-functioning.
In other words, being autistic in an allistic world is like the laws of thermodynamics.
- you can’t win
- you can’t break even
- you can’t stop playing
(Okay, that simplifies the laws of thermodynamics like a lot, but the analogy still fits.)
In the end, what functioning levels come down to from an allistic point of view is the answer to the question: Can we successfully stuff them into a socially acceptable box after years of violently abusive therapy, or are they already a lost cause?
If box: high-functioning.
If no box: low-functioning.
This. I want to add (from personal experience) that there is a sort of “medium-functioning” category that you can sometimes get put in that isn’t really any better than the other two.
You still get spoken for and don’t get to have feelings or opinions, but you’re also blamed for your failures and denied accommodations because you succeeded at something once and they’re sick of you being a burden and want you to get better already. They know you will never get better and make no plans for you ever being independent, but they think of you as a person just enough to blame you for it. And you also don’t get to have opinions on Autism because you’re better than some people.
I think you get put in this box by not being able to be stuffed into the social acceptable box long term, but still be well trained enough to be vaguely presentable for short periods of time. Bonus points for not really being impaired enough to be an effective pity object, but knowing enough cute tricks to be an interesting conversation piece in dinner parties.
Yeah, that’s pretty much me. Marvin and I often joke about me being “moderately autistic” or “medium autistic”, because of how other people really don’t know which box to put me in.
On one hand, for three or four hours I can appear relatively non-disabled, and maybe even likeable and charming. On good days I can give presentations with my mouth parts. I can force some eye contact and smiles. On the other hand, people have seen me just flop down on the floor in autistic catatonia, flap my hands angrily at bad noises, and go completely non-verbal. On bad days people speak to Marvin instead of directly to me, assuming I can’t understand them.
You described existing in the limbo between being perceived as high-functioning and being perceived as low functioning very well.
This photoset is dedicated to the people who have been sending me anonymous asks lately about how cute I am, about how nice my makeup looks in my videos, and about how they feel less-sparkly in comparison. The first two things are really nice to hear and I always appreciate sweet messages, but the last thing is sad to hear, especially from fellow chronically ill people and people with sensory issues.
These no-makeup selfies were all taken within the last twelve months. It’s important to keep in mind that I spend about an hour doing my makeup before filming my Ask an Autistic episodes, so the internet is really only ever seeing the prettiest, least-tired/sick looking version of myself. It’s the same way for lots of youtubers.
Most often I live in pyjamas, Marvin’s old t-shirts, and oversized sweatshirts, with messy hair and without a stitch of makeup to conceal the dark circles under my eyes or lengthen my eyelashes. And even in these selfies I am smiling and posed in a flattering way, so if we were speaking in person right now, I would look even farther from my appearance in my videos.
I am Amythest whether I am wearing makeup or not. Both versions are the “real me”, and I’m generally okay with how I look either way, but my youtube self is carefully crafted to be very feminine and fall in line with societal standards of beauty. I don’t look like that even three days out of the week. Please don’t compare yourself (or what kind of hygiene/beauty regime you can manage) to other people, especially not me. It’s so important to love yourself, or at least not be tearing yourself down. The world will do enough of that for us.
You are all super and great and cute, and I love you!





