actual autism awareness

PSA to our followers this Autism Acceptance Month:
  • Use Autism **Acceptance** Month (as opposed to Autism Awareness Month).
  • NO “light it up blue” or puzzle pieces. Google “Autism Speaks hate group” to learn more.
  • Use red or gold instead, which are colors supported by the autistic community.
  • Use identity-first language (most autistic people prefer “autistic” instead of “person with autism”), but don’t police the language of someone who prefers to be called a person with autism.
  • NO scare terms like “suffering with autism” or “afflicted with autism.”
  • Avoid functioning labels like “high functioning” or “low functioning.”
  • If autistic voices are not at the center of your efforts, you’re doing it wrong.
  • When in doubt, ASK AN AUTISTIC PERSON. 
  • To learn more about autism, visit autistic-run organizations like the Autistic Self Advocacy Network (ASAN) and Autism Women’s Network (AWN).
Autism Awareness Month

April is Autism awareness month and I just wanted to tell all of you to NOT support Autism Speaks Because they don’t care about Autistic people.

If you want to support an organization that actually DOES support Autistic people show some Support for ASAN (Autistic Self Advocacy Network) & The Autism Women’s Network

Both of these organizations were founded by Autistic People by Autistic People where as Autism Speaks doesn’t have Autistic people in their so called organization

ASAN can be followed on Tumblr @autisticadvocacy 

AWN  can be followed on Tumblr @autisticwomen

Does anyone else get the thing where if you’re watching a TV show you genuinely can’t handle any chaos or drama, like if a character messes something up I find it so frustrating, even though I know it’s written for comedy purposes or plot development

It means I’ve skipped scenes, episodes, or even a full season of shows to avoid having to rewatch all the chaos

[Caption: 

A multicolored banner. The colors, in order, are a pinkish orange, pink, light pink, light blue, a less light blue that is still light, teal, light green, and green. There are three layers. Each layer says something different in a white, handwriting-like typeface.

They say: 

Don’t let anyone tell you that your stimming is bad.

It’s a natural part of being you. It’s a part of who you are.

All stimming is good stimming. Just be careful and don’t hurt yourself.]

Sparrows and Penguins

(or, An Anonymous Guest Blogger Stops By)

Imagine that you’re a sparrow, living in a family of sparrows in a town of sparrows in a world of sparrows.

But you’re kind of a shitty sparrow. Kind of the worst sparrow, actually.

You can’t fly. You’ve been to doctors who have prescribed medicine to help with flying. But you still can’t. You try every day, and every day you fail and this thing which all the other sparrows tell you is critical.

For a while, you stop trying. Failing every day just wore you down and you couldn’t do it anymore, so you stopped trying to fly. It was nice in some ways, but you felt guilty because you weren’t raised to give up. It made a rift with your family. Flying is an important activity that sparrow families do together. Isn’t your family important to you? Don’t they deserve for you to at least make the effort?

So since it’s nothing medically wrong with you, you go to a therapist, who diagnoses you with a phobia of flying. You work on overcoming your fear. You’re lucky, your family is very accepting of mental illness (other sparrows are not so lucky, and it hurts your heart to think about that). They appreciate and admire how hard you’re working. They try to include you, so instead of getting together and flying, sometimes they get together and all sit in their nests. That sort of sucks too, but it’s a definite improvement.

You continue to try, and fail, to fly. You try harder. You try as hard as you can. Sometimes you can’t even make yourself flap your wings, it’s just such pointless bullshit and you feel like you’ll never succeed. Sometimes you go up on a chair and jump off and flap real hard and go splat anyway.

Sometimes mean birds make fun of you because you’re a terrible screw-up.

For 26 years, this is what your life is.

One day, almost out of nowhere, as an afterthought, an aside, something barely worth mentioning because it is so obvious, a doctor says, “by the way, you’re a penguin.”

Holy shit. You’re not a failure. You’re a penguin. You’re not lazy or stupid or weak. You don’t have messed up values. You’re a penguin. You have always been a penguin.

There’s nothing wrong with you, you’re a beautiful penguin. The most perfect penguin. But it’s just a fact, penguins can’t fly.

Now when you’re with you’re sparrow friends and they’re all sitting in nests, you sit in a bucket of ice. Mostly you bring your own. Some bird restaurants are really accommodating and will bring you a bucket of ice to sit in. Sometimes mean birds give you shit about your bucket, but it doesn’t hurt as much as it did before, because you know you’re a penguin and you’re just exactly what a penguin is meant to be.

You give yourself permission to stop trying to fly. Not failing all the time improves your mood and overall function. You finally feel confident declining when invited to flying outings. You don’t waste the energy feeling guilty about it.

You love your family of sparrows, but you also find a whole community of penguins to love too. Things you thought were just you, like preferring fish to bird seed, things you thought you were totally alone in and wrong for, are common and accepted. Some are even admired. Your new penguin friends think your flippers and chubby penguin belly are lovely. You bond over how and when you discovered you loved swimming.

Knowing you’re a penguin means knowing where you fit in a world you never felt like you fit into. It means all the things penguins can’t do, it’s not a personal failing when you can’t do them. You’re not supposed to be able to. You can do other things instead. Sparrows are actually quite poor swimmers. You feel good about the things you excel at.

This is why I think labels are important. This is why I think “we’re all birds, let’s focus on our similarities instead of our differences” is harmful. This is how my autism diagnosis was like breathing, after holding my breath for 26 years.

Picture by @unfortunatelytheartblog.

Self diagnosing yourself with autism hurts actual autistics

Please stop diagnosing yourself with autism just because you FEEL weird or random or quirky.

Autism is not a quirk or gender you can just assign to yourself. Autism is a very real and serious mental condition that can cause a lot of struggle and pain for people who truly have it.

Just pretending you have it with no real evidence does two things:

1.) It can give lots of people a wrong view of what autism looks like
2.) It can take resources away from people who are actually officially diagnosed with it and need the support for it more than you do.

So stop it because it’s incredibly destructive and incredibly insulting to people who actually have it.

Okay so just a little heads up:

If you work in retail, or somewhere else that require costumer service, please do not think that customers are being rude if they do not answer you.

That customer may have anxiety, selective mutism, or be autistic. They might not be able to talk or they may be too afraid to make small talk.

So please don’t call us assholes, shitheads, or bitches because we can’t make small talk at the counter. It’s probably not our fault.

Reminder to everyone celebrating “Autism Awareness” today
  • Autism is part of who we are, it’s brilliant and it doesn’t need a cure.
  • Allism (non-autistic) is not inherently better than autism, it’s just that the majority of people are allistic, which means the world is tailored to them, rather than to autistics.
  • Autistic people know more about autism than parents of autistic kids.
  • Autism Speaks is a terrible organisation that causes a lot of harm to autistic people and you shouldn’t support it.
  • You also shouldn’t Light It Up Blue, a movement started by Autism Speaks.
  • Labels like “high functioning” and “severe” are silly and used to divide and dismiss autistic people. Autism is a spectrum and people have a lot of different autistic “traits” - it doesn’t just go from less autistic to more autistic.
  • Autistic people are not puzzle pieces, mysteries, or missing in any way.
  • Anyone can be autistic, not just the stereotypical white male kid. Girls are much less likely to get a diagnosis than boys are, though.
  • The majority of autistic people are not fond of today, as it is used by to talk over us. Please listen to us today.
Autism Awareness vs Autism Acceptance

The notorious organization Autism Speaks has elevated the month of April as Autism Awareness Month.  I have found over the past few years since self- diagnosing with Asperger’s Syndrome, that I strongly prefer the idea of Autism Acceptance. One small word could change your whole outlook when it comes to supporting your friends and family members on the spectrum.

When I hear of things like Breast Cancer Awareness, Epilepsy Awareness, or see the myriad support ribbons for things like hepatitis, HIV/AIDS, all kinds of cancers, thousands of diseases, and recognition for the survivors of these conditions, the farthest thing from my mind is neurodiversity. These conditions present health risks in and of themselves; autism presents no concurrent life-threatening illness.

Neurodiversity is not like the rest of these diagnoses. There was no “autism virus” that found its way into my body to wreak havoc on my sensory input preferences, or to attack my organs that are in charge of my social skills. My autism is not going to put me into cardiac arrest, nor are my autism cells going to take over the surrounding cells to form autistic carcinomas.

Autism is not a disease; it is simply a difference in brain structure, in mental abilities, and ways of thinking and experiencing the world. Of course, there exist what are commonly called “symptoms” of autism, and those can vary from making someone slightly different than a neurotypical person, to interfering with everyday functioning, to being downright painful to live with.  

The aforementioned conditions have, and need, awareness in the form of donations, support, and recognition to study causes and possible prevention. A large part of these recognized organizations receive enthusiastic support from the people affected by the condition, and their families. They regularly dialogue with the affected persons and use their funds to make these people’s lives better. Autism Speaks does none of these things: they have no one that falls on the autism spectrum in positions within their member panel, and seemingly ignore input from actual autistic people. Their mission is to lessen the suffering of the families of autistic individuals and to research ways to eliminate autism altogether, instead of bettering the lives of autistic individuals themselves and helping them become self-sufficient.

Autism Speaks, the idea of Autism Awareness (as opposed to acceptance), and the general idea that autism needs to be prevented, goes against what a large part of the autistic community thinks. There is a strong movement for Autism Acceptance—to recognize the better parts of the diagnosis and manage daily life with the struggles that come along with it. It is a movement founded by individuals affected by autism who insist that they are not simply a burden to be carried by the family members unlucky enough to have found themselves in the position to care for them. These people wish to be accepted a world that, on the whole, tries to place them apart from the “norm” and deem them incapable of offering anything worthwhile to society.

For me, Autism Acceptance means seeing me as I am, with my positive aspects as well as my faults. It means supporting me when times are too difficult for me to even try to reach out; it means sharing my happiness even if it seems trivial to you, and especially if I don’t express it as overtly as you would like me to. Acceptance means understanding that my symptoms are not something I can control, but that there are ways to accommodate my needs. Seeing, understanding, and recognizing my specific requirements lets me function the best I can, and in turn, utilize my own skills for the benefit of everyone.

To accept my autism is not to simply tolerate my differences, but to recognize that underneath the mask I wear to “fit in” is an individual who is just as valuable to society as you are.

“Lost in Face” An unplanned for interruption to protocol on the wrong day can be all it takes for an Aspie/Autistic person to go into overload/meltdown mode. Every ability to take in, focus on, and process information can fail all at the same time leaving you dead in the water. This can take moments, hours, or days to recover from, and usually needs alone time, or time with a trusted (caring) person.

Don’t forget to support me on PATREON.COM/IRISHWOLFPRODUCTIONS if you like what I do.

anonymous asked:

Hi. I work in a research setting and I often see autistic children of elementary-school age. Sometimes I have kids who are difficult to manage because they appear to be having tantrums/meltdowns. But being a NT with no prior experience with autistic children, I find it difficult to distinguish between behavior that stems from them being autistic and wanting to adjust their environment to make it less uncomfortable, and behavior that might just be a six year old acting out (e.g yelling words 1/2

/phrases over and over, pushing chairs around without concern for surroundings, throwing assessment materials, etc.). I’m often at a loss as to whether or not the behavior needs reprimanding, and I wonder if I’m doing wrong as the adult by keeping silent, ignoring the behavior and assuming they need to ‘act out’ in this way to reduce anxiety. I want to be sensitive to their needs but still be in control of the situation as the adult. Can you please advise me? Thanks 2/2

The first, and hardest, thing to do is make sure that you understand the difference between a tantrum and a meltdown. In the most simple terms, tantrums are about things that a child wants. Meltdowns are about things that a child needs. The differences may seem subtle at first, but when you know what to look for they are usually fairly easy to differentiate.

  • Tantrums (are about wants)
    • Goal Oriented
      • The person has a specific goal in mind.
      • Examples: I want pizza. I want to play. I want that toy. I don’t want to do my homework. I don’t want to clean my room.
    • About Control
      • Is intentionally trying to manipulate the situation to what they believe is a favorable outcome.
      • They are in control of their actions.
    • Performed for Audience
      • A tantrum is directed at authority figures that can give the person what they want; teacher, parent, etc.
      • Will last until they get what they want.
    • Monitors Engagement
      • They make sure that their audience is watching / listening, and will adapt if they are not.
      • Example: If they are throwing things and the authority figure looks away, the person might start screaming. If the authority figure leaves, the person might follow.
    • Monitors Environment
      • The person having the temper tantrum monitors the environment to prevent themselves from being hurt.
      • They will avoid injury, and if they are hurt will likely react to the injury even to the exclusion of their goal.
    • Escalate / Deescalate Quickly
      •  When a person decides to throw a temper tantrum, there is usually a very swift escalation.
      • There may be an explicit threat such as, “give me what I want or I will scream.”
      • When the goal is achieved, deescalates very quickly.
    • Some Signs of a Tantrum
      • Wants something
      • Want is usually easily achievable
      • Access to want is denied by another
        • Example: An authority figure saying they cannot play
        • Example: Another child refusing to share a toy
      • May be threat of tantrum
        • Example: If you don’t X, I will Y
  • Meltdowns (are about needs)
    • Not Goal Oriented
      • May not know what they need.
      • Usually the result of overstimulation
    • Loss of Control
      • Fight or Flight Response.
      • May not respond at all to stimuli outside of meltdown.
      • May not end immediately when source stimuli removed.
    • Not Performative
      • Usually directed at self.
      • Will last at least until offending stimulus is resolved
    • Does not Monitor Engagement / Environment
      • Will not seek engagement.
      • May engage if forced to.
      • May react violently to forced engagement.
      • May engage in self injurious behaviors.
      • Likely unaware of surrounding dangers.
    • Escalation Varies / Deescalate Slowly
      • Escalation may be fast.
        • Example: Sudden nose like fire alarm.
      • Escalation may be slow.
        • Example: Bothersome tag in clothing.
      • Deescalation is usually slow.
        • Removal of or from stimuli may not trigger deescalation initially.
        • Meltdown may be self-supporting trigger of meltdown
        • Recovery usually takes time
      • Some Signs of Meltdowns
        • Change in engagement.
          • Example: Staring at nothing.
        • Change in behavior.
          • Example: Rocking, fidgeting, or otherwise stimming
        • Expresses unrealistic needs
          • May be nonspecific
            • Example: Vague request to make it stop.
          • May be unattainable
            • Example: Stop it from raining.
        • Expresses fear of stimuli.
        • Expresses pain from stimuli.
          • May be counterintuitive
          • Example: A soft repetitive hum from a fan that is “painful” to hear, causes a headache or stomachache, makes their skin crawl.
        • Triggers signs of mental illnesses or other neurological states.
          • May appear as part of slow or quick escalation
          • Body Focused Repetitive Behaviors.
          • Obsessions / Compulsions.
          • Tics.
          • Impulsive behaviors.
          • Malaise. 
          • Worry or fretting.
          • Other general signs of depression or anxiety.

Tantrums are usually expected in the age range of about 2 to 6 years old, but as autistics are developmentally disabled, it is possible for this to extend to any age, depending on the specific autistic.

To complicate it more, in some autistics expressing extremes of emotion is in and of itself a meltdown trigger. Something that begins as a tantrum can become a meltdown for a variety of reasons, though I would say this isn’t too incredibly common unless the autistic in question has emotionally triggered meltdowns over other emotions as well.

So yeah. That’s a lot of information there, I’m sure. Hopefully this breakdown will help! If you have any more questions please feel free to send me another ask.

My World is a Kaleidoscope

My world is like a kaleidoscope, I want to tell them
Soft pastels bleed into a setting resembling a Monet painting, while a single thread of focus holds my attention
A book, a particularly rhythmic piece of music, the bliss of a soft pair of pants
It sounds silly, to say it out loud, but my world is not the same as your world
Or maybe we just experience it through different lenses

I won’t lie, it isn’t all beautiful
The sound of someone using a paper towel grinds on my ears like the shriek of monkeys
If you say something to me in the wrong tone of voice, I have to try and convince myself you aren’t angry

People tell me I look nice with my hair up, but what they don’t know is that wearing it down makes my neck feel as though a million pine needles are rubbing against my skin
I couldn’t wear jeans until I was in middle school, because their fabric felt like sandpaper on my skin
When I went to primary school in England, my mother had to order special shirts for my uniforms because if someone tried to put a polo on me, I would cry and scream because the collar felt like someone was strangling me

There used to be a commercial about recognizing the signs of a stroke, with Sharon Stone in it
She wore all white makeup, and the lighting would menacingly flicker in, and she’d talk in a deep, monotone voice
And every time I saw that commercial, up until I was 12 or 13 and they stopped airing it, I would instantly feel my blood go cold and my skin go clammy
My heart would start beating really fast, and since I didn’t know what was happening to me, all I could do was scream until someone else ran in to mute the commercial
It was involuntary, I have no idea what it was about that commercial, but I remember it vividly
I remember being ashamed, embarrassed, that I could not control myself
That part never went away

I want to tell them that I am an artist
When I was little, I mean, like two years old, I used to memorize the names of all the Crayola colors in the box
And when I went to pre k, and everyone else was learning red, green, blue
I knew magenta, burnt sienna, turquoise, sky blue, royal blue, violet, periwinkle, lime
I said these colors like they were the gospel because to me they were something beautiful, and I loved all of them

I couldn’t hold a pencil until I was in third or fourth grade, and I had to get special permission to type my assignments
My hand didn’t have the fine motor skills necessary for writing, which meant it didn’t have the motor skills necessary for coloring or drawing neat little pictures

But everyday, I’d bring my parents piles of artwork, piles of colored pictures, all outside of the lines, all scribbled glory and unabashed youth
Kids used to make fun of me, and I spent so much time crying out near the cubbies because I couldn’t color like they did, or write my name like they did
Then they made fun of me for crying, but I kept drawing

Today I’ve won county, state, and regional contests, when I was a freshmen my art made it to a national contest through 4H
And still, sometimes my hand will drop a pencil, or fling a utensil out in front of my desk for no reason
And everyone will look at me, but I don’t cry anymore
Never in front of them again

I want to tell them that I love science
When I was very young, I mean, 4 years old, my mom pulled up videos of amoebas on our home computer
I thought those were the greatest, funniest things in the world, the way they ate up the other organisms and absorbed them into their own mass
I used to look up different types of bacteria, strep and staph and their different strains, I looked up genetic diseases and the rarest medical conditions
My favorite show was House M.D. as a fourth grader

When asked what I wanted to be when I grew up, I said a neurologist, than I said neuro-genetics, and now I say biochemistry and genetics
I used to be ashamed and scared of my interests, and nobody ever wanted to talk to me about CRISPR or gene therapy or cloning, and now these things are assets to me
I’ve been lucky enough to know what I wanted to do since I was six, and I think how many people get to know what their passions are before they even know how to write

I want to tell them about my family
My sister, the nonconformist who loves to read and despises fractions with a passion
Whose wit is sharp enough to slice steel, whose stubbornness and perseverance earned her the affectionate nickname “little buffalo”
My little sister with perfect pitch, who plays two instruments and isn’t even in middle school yet
My sister who has the best stories but can’t spell to save her life, who is the most creative mind in school but is confined to fill-in-the-blank standardized tests that confuse her
My sister, who people keep reminding me “isn’t like me,” they see me the say “prodigy”
And they see her and they think “unfocused, doesn’t apply herself, isn’t academically gifted but has a great personality,” which is to say they only value creativity when it’s measureable, profitable

My mother, who knows what I am going through and sees too much of herself in me for this to be an accident
Who grew up dissecting animals on the farm because she loved anatomy, who couldn’t follow social conventions, who never had the opportunities I do now
My mother who grew up in a time where people like my sister and I weren’t accommodated but beaten, whispered about, stared at in the middle of small town gatherings
My mother who lost friendships with other parents who took personal offense to me as a child, who raised me with no knowledge on what Autism Spectrum actually meant
My mother who has grown so much, who sees her own childhood and experiences finally explained in me and through the information now available

My father, who is so quiet and also the entire comforting roar of ocean waves
He is an artist like me, but also a builder, a thinker, an innovator
A master of blending in, and still I recognize an air of familiarity
In the exhilarated discussion of the Everglades and tropical fish, and in the brutal scrutiny in his carpentry
I hesitate letting him in on school projects because even though I know that with him it will be absolutely perfect, he will spend an hour trying to get the paper on the poster board straight
My father, the kitchen’s beat boxer and repeater of words, the artist and builder and crafter, who loves my sister and I and understands as closely as anyone will ever get

I want to tell them that I, that we, people like me, are not accidents
We’re not just mistakes in genetic code, or a series of environmental factors, or puzzles waiting to be solved
If they really want to get to know us, they can just ask us
Our lives aren’t always easy, we suffer sometimes, I know I’ve suffered sometimes
Sometimes we can be tedious, our needs may be difficult to pinpoint, our behavior may shock you or horrify you or scare you or bewilder you
But then, at this point I ask, doesn’t everyone have moments like this
We are all burdens, we are all gifts, we are all worthy of living as we are

I want to tell them that I don’t want to be fixed, because there is nothing to be fixed
Maybe I’d like to not bang my head against a wall when I’m stressed, or not be too uncomfortable to be hugged, or not scratch and pick at my skin when I’m anxious, or not be unable to talk sometimes, or not feel like my brain is stuffed with cotton during verbal conversations
Maybe I’d like to be able to write like other people, to be able to copy down pictures and graphs in my physics and math classes with ease like they do, to be able to read numbers like they do, to be able to go to parties and malls and social gatherings without feeling like I’m floating away like they do

But I think of all the things I’d potentially be giving up if they would have their “cure”
My drawings, maybe I’d still be an artist, but I never would have had the determination, the passion I do now because I would have known what it was like to color inside the lines, my art would not be the same
Maybe I’d still like science, but I would never have spent hours researching the human brain and psychology and genetics, I would never have known the joy and amusement I felt when my mother showed toddler-me the amoebas

Maybe my sister would still be a musician, but she would not have the focus to listen to the same song over and over, the ability to recognize when a note is flat or sharp or just right without looking at sheet music
She’d never have the compassion and open-mindedness she has now because she knows what it’s like to truly function differently from everyone else and be ridiculed for it

Maybe we wouldn’t have our problems anymore, but we also wouldn’t be us anymore
Our experiences would be taken from us in the name of our own good, our passion exchanged in the name of normalcy

They can argue with me all they want, tell me I don’t know what I’m talking about, call me a liar, dare to call me “high-functioning”
But they will never know what it’s like at all, they’ll never see the world as a kaleidoscope

And that’s okay, but what I really want to tell them, is that they don’t have to be afraid
I want to tell them that their children are going to be okay, and they are too
I know it’s hard, I know it’s confusing, but they will get through this and their kids are not broken, they too will persevere

I want to tell them that vaccines did not cause this, we have always been here
I want to tell them that people don’t grow out of this, there are plenty of adults on the spectrum, and that’s okay

I want to tell them that trying to make their kid “normal” only teaches them to be ashamed, and only teaches them to hide their true nature, which only causes more problems
I want to tell them that even if there was a cure, they’d be altering the entirety of a person’s mind, their interests, behavior, personality, potential experiences, and I don’t think that that is a choice anyone should get to make

I want to tell them that they’ll never entirely understand, no one can entirely understand another person’s brain anyway and it would be foolish to try and generalize anyways
I want to tell them that’s okay
We just experience things from different lenses

This Is A PSA

Reminder for Autism Awareness day and month that the only Blue my autistic ass supports is our new autistic lord and savor, Billy Cranston, who would much prefer we light it up red than support a group that actively compares who we are to actual cancer. Anyway.

*clears throat*

🎶Go go Power Rangers! POOOWWWEERRR RAAANNNGGEEERRRRRSSS!!!🎶

Who else has had a similar encounter?

Autism speaks supporter: “Autism speaks is so good.” “That is so offensive, they are people with autism.” “I work with children with autism I KNOW what I’m talking about.” “My sisters friends brother in laws aunties godchild has autism so I get it.” “Autism speaks lets people with autism speak.”

ACTUAL AUTISTIC PERSON: “Actually…”

Autism speaks supporter: *ableism babbling* “You probably don’t even have autism.” “You need access to behavioural support.” “You don’t know what you’re talking about.” *dehumanising conversation.*

(If you support autism speaks, listen to actual autistic people. It hurts when you think you are doing a good thing and someone says you maybe aren’t doing the best. People don’t like being told they aren’t supporting properly when they think they are, honestly I don’t blame you because logically thinking why would leading global charities be harmful to the people they claim to support? It’s stupid! But they are so just listen to us.)

Following in the Path of my Hero

(or, When I Grow Up, I Want to be Just Like Amythest!)

I want to start by explaining who my hero is in this context for those that don’t know. Amythest Schaber, known as @neurowonderful on Tumblr, is a self-advocate and activist who was pivotal in two important aspects of my life.

Like many of my own followers, Amythest’s YouTube series, Ask an Autistic, was a significant force in my self-acceptance. The second aspect, and perhaps more salient to this post, is that Amythest provides a blueprint for autism and neurodiversity activism; a blueprint that I would come come to define myself by.

The way I choose to define myself, my identity as it is today, was seeded by my aspirations to be the activist I saw and continue to see in Amythest. Put another way, when I grow up I want to be an activist and help people the way Amythest helped me.

This aspiration led me to create this blog, to attend university nearly twenty years after I had given up on the idea, and it led me to my first published piece as a professional writer - a life-long dream that until recently had been little more than idle fantasy.

Yesterday was a big day for me. I stepped firmly out of the world of self-advocacy and into the world of activism. So what changed?

Well, yesterday I had a meeting with Dr. Hudson, the director of the Student Center for Diversity, Equity, and Inclusion at my university. We talked about autism. We talked about autism awareness. We talked about autism acceptance. Most importantly, we talked about how to position this school as a leader of neurodiversity acceptance, inclusion, and most of all, accessibility.

Not accommodation - accessibility.

As it is right now, there are two events at our school that deal with autism. One focuses on autism awareness the way most people mean it, and one focuses on autism awareness the way we as a community mean it. Dr. Hudson wants to bridge the gap between the two, and he has asked me to be the student that does that.

Dr. Hudson has been seeking ways to expand on the April autism awareness campaigns into a year-round program of neurodiversity acceptance. This program is not meant to be token events, but rather the basis for what will become University mandated policy in neurodiversity accessibility training for professors, administrators, and student facing employees.

I have been asked not only to create a program of events spread throughout the year, but I have been asked to do it in a way that can transition into standardized policy.

How does this work?

Let’s take the issue of closed captioning. There is no requirement for professors to provide closed captioning on anything unless the Office of Disability Services informs the professor of formal accommodations. But why? Closed captioning doesn’t hurt anything, and it could easily be the difference between a B and an A for a student that needs it - perhaps not enough for them to request accommodation, but why shouldn’t they be able to fully understand the video?

I address this issue, perhaps, by presenting a lecture to students and faculty on the benefits of closed captioning for disabled and neurodiverse students. I make the argument that close captioning should be standard; that professors should only be using videos that include closed captioning and it should be turned on be default. Maybe I cite studies, maybe I include interviews of autistics or HoH/Deaf students ruminating on the differences between classes that provide it be default and those that don’t. Maybe some professors take this to heart, but most won’t.

After introducing these things, Dr. Hudson takes them to the administration. He shows them how the professors that listened were able to make the necessary changes, and makes the argument that it should be policy.

To be clear, Dr. Hudson has a lot of power within the school to address these specific issues. His job is explicitly about making this school accessible to underserved demographics in this city - from working class people to undocumented immigrants (we are a sanctuary school!), to physically disabled students, to neurodiverse students.

Let me repeat that - Dr. Hudson’s job is to make this school accessible. And believe me, he understands just what the significance is by saying accessible instead of accommodating. Best of all, when it comes to burden of proof required for him to change accessibility policy, I get the impression the bar is low. As long as he shows that it will probably help people, he has the power to make it happen.

And now?

I am the student responsible for bringing a broader neurodiversity awareness, acceptance, and accessibility to this school. I talk a lot about autism because that is what this blog is, but my role at school is about all neurodiversity. Depression, anxiety, psychosis, developmental disabilities, communication disabilities, learning disabilities, everything.

This is the work I wanted to do professionally after earning my masters degree or PhD. Instead, I start next week - as freshman in my second semester of undergraduate studies.

My wife, @paxardens and my partners @cassandrasimplex and @vulcanfeminist, my friends @alexithymia42, @elliottiguess and @stumble-tumble-bumble… they all played a huge role in helping me come to understand myself, love myself, and strive for more.

My activism? The way I want to approach bringing acceptance of neurodiversity and more importantly bring accessibility to neurodiverse people? That is powered by the support of my family, the women from my regular tea party that are my chosen family, and my friends; but it is built with the blueprint from my personal hero, Amythest.

I can’t wait to see what the next four years bring, and I can’t wait to share it with all of you. Whatever journey is ahead, it starts today; today, I follow in the path of my hero, and I couldn’t be happier.