Wibbly Wobbly Thoughts

 Corina Becker writes Wibbly Wobbly Thoughts on No Stereotypes Here

I started writing this for ASDay 2021. I got mostly done and then lost my train of thought. Picking it again for ASDay 2022.

I keep trying to come up with something to write about, and I start down a good idea, and then get distracted or the inspiration fizzles out. Sometimes I feel despair, because a lot of the topics that come up are the same topics I've written about years ago. Sure, I could write about the exact circumstances of the issue, how it affects people. Use my hard-earned degree to form some sort of argument. But I also just want to write about other things. 

I started to write an open letter to my government about how the pandemic has impacted me, specifically financially. It was going to be an anecdote to support the argument for Universal Basic Income. I was going to compare my life before the pandemic, and now, with how instead of worrying about support coming in from different areas with amounts that adjust from week to week, I can make financial decisions and be confident about being able to afford basic needs and make financial decisions about repairing or replacing items, about being able to take time off work when sick or injured. Because I'm currently on unemployment, and that pays more than ODSP and my job. 

However, I also wanted to write about corsets, and history bounding. The other year, I wrote my thesis about accessibility at autism conferences, and then I went to a costuming convention where a lot of the attendees were disabled. 'If only I had known sooner,' I thought. 'Writing about disability in costuming would be fascinating!' 

I got into corsets from a friend I met at an autism conference; they were wearing a corset and describing how it felt like a calming hug. A personalized weighted blanket. Over the years, I explored mass-produced corsets available online, and determined I needed to make my own. It would also be handy to wear to the LARP I had joined. And so, I dived into the world of historical sewing. 

Which lead me to this convention and the realization that I don't really like modern clothing. The hems, the fabrics, the fit. It has been revolutionary for me to relearn sewing and attempt to sew my own clothing. Clothes should not feel like something to tolerate, but provide comfort and ease. If I must dress myself in clothing made from bed sheets in order to do so, then so be it.

And at the same time, I want to talk about stories. About how research can be used to tell stories. How research can be used to tell stories through data. There's a tendency to respond "well duh" to some studies, and I think that is a disservice to both the autistic community and researchers. Yes, we write stories and blog about issues. But studies take our stories and combine them. By combining our stories and codifying, it says "this isn't just a few people, this is a wider issue."

And I want to talk about my thesis, a learning experience I treasure. How it sparked for me an interest in research and the possibility of further studies. How I want to connect what I've spent all these years studying to my communities, as tools to our causes and needs.

I want to talk about my new kitten, Ezra, and the joy he gives me. Especially when he's being sweet and cuddly. 

I want to talk about the sudden loss of spoons, the desire to do something but being unable to start or complete the action. The need to write something, anything, only to feel the spark fizzle out at an empty screen. The despair as idea piles upon idea, building up to an aching pressure.

I want to talk about pain. The sharp stabs and the deep aches that become constant companions. The pains that are temporary, the pains that are chronic, and the pains that very slowly heal. 

And finally, I want to talk about perseverance. Whether through hope or spite, the importance of continuing on. To do what you can, when you can, however you do it. How I'm learning to forgive myself for taking time, as I forgive others. To recognize my own limits, as I recognize the same for others. To pause and rest when I need it, and to take my time recharging. To let myself fall apart. To let myself put myself back together at my own speed. 

To let myself enjoy things. 

And, when I'm ready, to write again. 

It's a Dream Life

 David Cameron Staples (Catsidhe) posts It's a Dream Life

It's a Dream Life

Have you ever had that dream?
You know the one:
You have a job to do, but you're not quite sure what it is.
Or how to do it.
Or why it's important.
Or what to do it with.
Or where.
But you know it's important.
And everyone's angry.
And it's your fault it hasn't been done.

Have you ever had that dream?
You know the one:
Someone's telling you something really important.
But you can't hear them.
And when you can, you can't understand the language.
And when you can, you can't hold on to the meaning.
And when you can, you forget it right away.
And you remember much later that there was something important.
But it's too late.

Other people say they dream of flying.
I dream of dreaming of swooping and gliding.
Other people say they dream of talking to important people.
They dream of being there with them:
Treated as important,
Their opinions listened to,
Their anger valid and relevant,
Their ideas acted upon by others.

Have you ever had that dream?
You know the one.
Everyone's angry with you, but you don't know why.
Nobody will tell you what you said.
Nobody will tell you what you did.
Nobody will tell you what rule you broke.
Nobody will tell you what you should have done.
Nobody will accept your apology for ... something really bad, apparently.
It's all your fault and you have no idea why.

It's a Dream Life.

Growing Up Autistic Without a Diagnosis, and the Importance of Community

Christina-Marie "The Gonzo Mama" Wright posts Growing Up Autistic Without a Diagnosis, and the Importance of Community on The Gonzo Mama CN: mention of suicidal ideation

On Autistics Speaking Day, it seems appropriate to reflect upon the importance of community, but in doing so, I couldn't help but think about what life was like, before I found it.

I was not a child who was indistinguishable from my peers.

Instead, I was a child who stood out for various reasons:

My mom says when I was a toddler, I didn't point out things that were readily apparent to others. That is to say, when we were in the car and drove past a herd of cows, I didn't point, and say, "Cows!" because obviously, there were cows. Why point it out? Everyone can see them, so what's the purpose of exclaiming the obvious?

When I did speak at that age, people thought I was older, because I spoke like an adult. And that "tiny grown up" perception followed me throughout my childhood and youth, and a lot of times, it stood in the way of making friends, because kids my age thought I was arrogant, or weird, based on the way I spoke and tried to engage.

When I started school, I interrupted and corrected teachers and other students, and never understood why that was viewed as rude, disruptive, or inappropriate -- and certainly never understood why I was reprimanded or disciplined for it.

Read More Here 

A Letter to Jeanafer

Leo Jones posts A Letter to Jeanafer on Neurologic

Disclaimer: This piece does not apply to all parents nor all my friends. If you're worried it might, you can e-mail me at neurologicpodcast@gmail.com; I welcome such conversation, and the willingness to examine one's self after reading this letter is a significant sign that such worries are misplaced.

I've wanted to write this for at least five years, possibly more. It has harbored a place in my mind, changing shape but inherently being the same message. Even now it took over four months to finalize, and I'm still aching to tweak it.

Unfortunately it's hard to articulate that message in a way that is listened to, accepted, understood. I know the reaction will be so insecure, so angry, so emotional, that before it's processed, it gets rejected.

But I have to get this out. I have to document this, expunge it from my system, at least once.

Jeanafer, I do like you. I think you're a quality human being whose heart is in the right place; you work way harder than what is expected, and often are not paid more than lip service for it. You care deeply for your family, and you put them first. I have learned from working with you, and despite what I write here, I would be willing to do it again.

But I need to set some things straight first.

You and I keep hitting the same repeated arguments when it comes to autism - more specifically, autistic civil rights, neurotypical parents of autistics, neurotypical-led autism charities, and the issues that surround these topics. While we don't always agree, I keep on thinking that if I explain it well enough, describe it well enough, parse it down enough, that somehow that will be..well, enough to have you understand. On some topics this has changed - but mostly, it ends up devolving to an online screaming match, and I end up walking away feeling worse, feeling like I have failed both you and the autistic community.

What sticks with me is not the issues themselves, but what you've said and written.

“I wish my kids could be as expressive as you are and do half the things you can do, but at this point in their life they cannot.”

“I think some parents wish their kids were like you and it is hard for them because they are not at where you are at.”

You've told me why you left Autism $peaks - not because of their terrible, bigoted stereotyping of autistics, not because there was no one autistic on their board of directors, not even for some of the more callous, abysmal and exaggerated propaganda pieces (I Am Autism, Autism Every Day, etc) - but because they centralized all funds raised by local chapters instead of keeping the money local. And while you've gone on to state that you definitely do not agree with them based upon the above, I cannot be sure where you would stand today if the funds raised local had stayed local.

But I bring up these two specific quotes not only because of their emotional impact, but because they are commonly repeated to me by other parents - often used in conjunction with words like ‘inspiration/inspiring', ‘well-spoken’, ‘put-together’, or some semblance of not being able to ‘tell’ that I'm autistic.

When someone says ‘I wish my kids were like you’, does this make you feel good? Are you complimented, does it come across as flattering?

I’m seriously asking because for me...it never, ever feels that way.

I know that the intentions may be good by the person stating this; it's why I work to avoid responding in a negative or hostile fashion, eke out a smile, and either ask them ‘why?’ or redirect the conversation elsewhere. It has never felt like anything but a punch in the gut for me. It makes my stomach drop, as though I were standing on the edge of a bottomless pit with no railing or safety.

And then comes the realization that the person I'm talking to clearly doesn't know me at all - and instead of wanting to, has decided that they have me figured out; that they ‘get’ me. No matter what is discussed afterward, this thought stays prescient in my mind. It's not that they don't WANT to know more, it's just they have seen enough, and anything beyond that doesn't apply or fit their personal narrative of the individual they view in front of them.

Worse yet is when I think of their kid, and how they're being compared to an adult. What child would be able to rise to such impossible standards? Does the child even know they're being judged by a clearly faulty comparison?

Unfortunately, instead of coming correct and chewing the parent out for this pseudo-compliment that demeans their child, I end up not saying anything. What good would it do?, I think. Should I tell them about the struggles I had growing up, how they mirror their own child's issues, and how - even as an adult - I still have difficulties in daily life?

That last question is an easy one to answer - absolutely not.

It's bad enough to get treated as some sort of ‘miracle’ autistic, as the idyllic autistic offspring the parent wishes they had - but can you imagine how I'd be treated if that mask dropped?

Well, I know. And it would be silence. Massive amounts of silence. And not the soothing silence of one's home or headphones - no, the uncomfortable silence that comes from an abrupt end to communication, socialization, inclusion. No longer given responsibility for significant or important tasks, not taken seriously when expressing an idea, thought, or opinion, and relegated to a shallow acquaintanceship that never establishes bonds of legitimate trust.

But Jeanafer, I'm exhausted. I'm tired of just sitting or standing there and taking this gut-wrenching, so-called compliment. And though I maintain a job, pay my bills, cook my food, save money, have lasting friendships with people who truly care for me as much as I do them - referred to in common slang as ‘adulting’ - I still face difficulties as an autistic adult.

And even though you have an autistic child, the fact that you compare them to me truly reinforces the fact that you don't know what my life is like.

You don't know the days I've taken away from work because I just don't have the spoons to leave the apartment.

Or when I'm so unable to function I can't even put on a fucking sock - not a pair, just one goddamn sock.

Or the days that I'm so depressed I consider suicide.

You don't know the days where I spend hours thinking that I don't truly have friends, but people that merely tolerate me.

Or the days where I can't remember anything, especially people's names or dates or events, etc.

Or the days I have literal trouble speaking and socializing, coming across as silent when I don't want to be.

You don't know the days where I have the overwhelming urge to clean everything, draining me of spoons to where I can't do anything for days afterward.

Or the days where my adrenaline levels are so high I can barely string words together in a coherent fashion, trying to come across as calm and factual, while my brain speeds on, my hands and my body shaking as it courses through my veins.

Or the days when I physically stim because I'm incredibly happy and pleased with something, especially an accomplishment - even when it's something minor, like successfully trying a new recipe or getting all the tasks on my to-do list done in a day, or just enjoying something fully and in the moment.

And you don't know every single day, wearing my mask so much that I honestly am unsure as to who I really am or what I would be like without it.

Honestly, I'm afraid all you've ever seen of me is that mask.

I know you've heard of masking, and I want you to know it is a seriously real thing. I knew about it before I heard the term; taking each social situation and conversation and piecing together the unwritten rules, guidelines, taboos, norms, rituals and embedding them through practice and application. Years of this created a much more accepted person based on the restrictive society, at the cost of my own mental health.

As a child, I was desperate to be accepted, to have friends, to be included - because to do otherwise meant isolation. I forced myself to learn to behave like others behaved. Early on this resulted in a lot of trial and error - more error, because imitation and replication come across as mockery, and some people's behavior only works for them. It was hard, tedious and at times I never thought I'd figure it all out, at least not to the level I'm at today. I spent my college years getting an education in social relationships this way; and despite taking twice as long to earn a two-year degree, I'm glad I was able to learn how to make friends.

But it comes at a mental cost. Do I let my autistic tendencies out? Do I even know, truly, what they are? Will they be accepted/accommodated in all areas of my life?

What I do know is this: you do not know me. At least, not nearly as well as you think you do. And the fact that you refuse to acknowledge the person behind the mask - beyond your assumptions, beyond even the passive jealousy you have regarding my independence and advocacy - is increasingly eroding our once respectful and platonic relationship.

You admire and cherish the mask rather than the autistic behind it, and I'm weary of wearing it.

So I'm not going to, at least not around you, anymore. Maybe one day you will learn to accept me at face value; but considering the reality of masking that autistics deal with on a daily basis, I don't have much hope.

Unmasked regards,

Leo Jones

Literally Speaking About Not-Always-Speaking on Autistics Speaking Day

Alyssa posts Literally Speaking About Not-Always-Speaking on Autistics Speaking Day on Yes, That Too

This Autistics Speaking Day, I presented at the American EducationalStudies Association conference on my paper, “Am I the Curriculum?”

Given the origin of Autistics Speaking Day as a response to a Communication Shutdown event, telling neurotypicals to get off social media for the day to simulate and empathise with autistic communication difficulties, I think giving this literal speech on Autistics Speaking Day was fitting.

Autistic people often use tools like social media to support our communication. I believe that our doing so should be considered as the communication support it is, just as augmentative and alternative communication (AAC) researchers do for people they recognize as needing AAC. (I also think speaking autistic people should be recognized as needing AAC. Heck, AAC for everyone. Let's not depend on speech language pathologists specifically, or outsiders in general, to recognize communication difficulties that AAC could help with.)

Read More Here 

How Embracing Neurodiversity Helped Me to Find Myself

Cassandra Crosman posts How Embracing Neurodiversity Helped Me to Find Myself on In the Loop About Neurodiversity


I am now so proud to say that I accept myself for who I am. But I have not always been able to say that.

Growing up as an autistic child at school was difficult, but not always necessarily because of my autism, but mostly because of how others reacted to my autistic behaviors. When I recognized that I was different from other neurotypical children, I wanted to change myself to make friends and fit in. I saw other children interacting with each other and forming groups at lunch and recess, avoiding me when I tried to talk to them. I smiled at other children who I thought were laughing with me, but were in fact laughing at me. I noticed other children, and teachers as well, giving me strange looks when I covered my ears when the school bell would ring, or when other kids were shouting and laughing too loud. I learned to suppress my stimming and slip my fidgeting hands in my pockets. I was taught to look my teachers straight in the eyes, even if it made me feel uncomfortable to do so. I tried not to talk to others so extensively about my special interests, and I pretended to like the things that other children would like.


Read More Here

Would you believe your own child?

chavisory posts Would you believe your own child? on Chavisory's Notebook

For Autistics Speaking Day this year, I actually have a question for parents.

If you’re the parent of an autistic kid, and you have ever told an autistic adult (or are still in the habit of doing so), “If my child could speak or write like you, I would consider them cured…” or anything along those lines…

What if they could?

What if some form of treatment or therapy, that currently exists or that might yet be developed, works, and your autistic child gains the ability to share their thoughts in speech or writing?

And what if they said to you, “But I’m not cured.”

What if they said “I am working so hard, in ways I don’t even know how to explain to you.”

“I am so tired.”

“This is draining all of my cognitive and internal resources and I don’t know how long I can actually keep it up.”

“Maybe this looks easy to you, but it feels like my brain is swimming in molasses or doing complicated gymnastics to me.”

“Yes, I can talk, but you’re still speaking a foreign language and every time I answer you I’m carrying out a multistep process of translation and back-translation.”

“I was a real person this whole time. I heard every word you said.”

“I’m actually engaging in this act of elaborate fakery which makes me exhausted in order to make you happy because apparently that’s the only way I get to have rights or choices.”

(Or just because it hurts for you to be so unhappy with me all the time.)

“Sometimes being autistic is hard but sometimes it’s wonderful. I don’t need to be changed as much as I need other people to respect that I exist in the world differently.”

Would you believe them?

Or would you say “No, you’re cured! You’re not autistic anymore.”

Or “That’s great for you, but some people are really disabled.”

Or “You must be very high-functioning.”

“But some autistic people can’t communicate at all.”

“Not everyone is like you.”

“What gives you the right to speak for all autistic people?”

Is that what you would say to your child, if they were to gain an ability you say you dearly wish they could, if they were able to illuminate for you some aspect of why things are difficult for them in the ways that they are?

Would you treat them the way you treat other autistic people who’ve committed the sin of being even slightly articulate on the internet, and saying things like “I think we all deserve acceptance, I think our needs deserve respect, I think we all deserve not to have to live in institutions, I don’t regret my life the way it is?”

We often say that the way you treat autistic adults now is how you’re teaching other people to treat your child when they’re older.

You’re also telling your child how you’d treat them if, heaven forbid, they actually accomplished what you say you want.

And if that’s not how you would talk to your kid if they could speak or type, if they could translate their thoughts and wishes and experiences of the world to you…

Then why is that the way you talk to autistic adults you’re so convinced don’t have anything in common with your child now?

A few years ago, Maxfield Sparrow asked, in a post for We Are Like Your Child, “Do you believe in your children?”

My question is… Would you even believe your child? If they said the kinds of things you say you wish they could say?

On misunderstandings again

Leeanne Marshall writes On misunderstandings again on oneautisticperson

Autistics Speaking Day 2019: On misunderstandings again

Well, it is the 1^st November so Autistics Speaking Day has come around again meaning it is time to write my yearly blog post. In 2017 my post was about a lack of understanding on my part about several situations that had occurred throughout my life (Link is: https://oneautisticperson.tumblr.com/post/167004402567/autistics-speaking-day-on-understandings for anyone who is interested). This year, I want to highlight a few situations where non-autistic people have had misunderstandings about the abilities or preferences of myself/other autistic people based on information they think is relevant ….. but is not.

I am a qualified teacher. I also do a significant amount of public speaking. When I was on teaching practicums, my supervisors from the university would often tell me that the staff at my school placements were worried about me. The staff at the schools observed that I was quiet in the staffroom at lunch and recess (and just quiet in general around the staff). To the staff, this was apparently a sign that I would struggle to speak loudly and clearly to students in the classroom.

I was and still am somewhat puzzled by this. In the staffroom I have no idea what staff will discuss, I find it difficult to come up with something to say in response to what they have said and I have difficulty knowing when is a good time to say my response. In contrast, when I speak in front of a group of people – whether it be to a class or other setting – I have prepared my talk in advance, I know what I will be saying and I know when I have to say it. For me, these two situations are very different and are not connected.

The idea that a person must be willing and able to engage in group conversations as a prerequisite for being able to present in front of a group is an assumption being made by some people in the teaching profession. Perhaps this assumption is correct for certain people but it is certainly not true for everyone.

Concerning preferences, some autistic students prefer receiving information in written or visual format rather than verbal format. This preference will often be recorded in student profiles – as it should be. The problem is that some teachers see this listed preference and make an assumption that the student also prefers giving information in a written or visual format. This assumption might be correct but I have worked with several autistic students that prefer receiving information in written format but prefer giving information verbally. A person’s preferences for receiving and giving information may be different or the same.

What is my point for this post?

Well the point is certainly not that autistic people always prefer communicating verbally and are fine with public speaking! That is certainly not true. Several autistic people do find public speaking difficult and prefer to communicate via written format in all circumstances. Communication/social interaction strengths and weaknesses are different for each autistic person after all.

My point is that teachers, parents and other people working with autistic individuals need to critically think about the judgments they are making about the abilities and preferences of a particular autistic person. Are these judgments correct or have these judgments been made based on information that may not actually be relevant (and therefore are actually based on assumptions)? If the latter, how can the judgment be tested to see if it is true or false? I suggest asking the autistic person (and their family if appropriate) but what other ways could be used? The answer to that will depend on what judgments have been made.

I hope this has given readers something to think about.

Autistic Out Loud: an essay on Stimming and Autism Acceptance

Devin S. Turk posts Autistic Out Loud: an essay on Stimming and Autism Acceptance

"I can only describe the feeling “fizzy,” like fountain soda under my skin. The sensation starts in my shoulders, and by the time it travels down to my elbows, I’m already in motion. My hands become a blur; they move back-and-forth, up-and-down, in joyous, swooping arcs. After a moment, my arms are still again. The fizz has subsided. I exhale. This is what it’s like for me to flap my hands. I am autistic. And in this busy world of loud noises, bright lights, and complex social interactions, my body and my brain are frequently more overwhelmed and exhausted than that of a neurotypical person. The ways I absorb sensory information from my surroundings, how I interact with other people, and my patterns of self-stimulatory “stimming” movements are all parts of my Autism. Rocking back and forth, spinning objects, vocalizing, attentively listening to certain sounds, etc. are examples of stimming. Stimming is a part of my daily life. For autistic people like me, it can be a reflexive reaction to stimuli (or lack thereof) in our environment, a way of expressing emotion, communicative output, or any combination of those things. Stimming is a natural way for us to be present within the world, and it is essential to the wellbeing of many, if not most, autistic people.  But our Neurotypical society doesn’t see it that way. Obviously autistic or otherwise non-normative body movements are often understood by non-autistics to be demonstrations of everything our society discourages: Other-ness, pathology, and even sub-humanity. As autistics, we tend to get the message to differing degrees relatively soon after birth. Some of us are traumatized in early life by “therapies” that are designed to make us indistinguishable from our peers; to stifle us, to quiet us, and to shrink us down into something more digestible to the neurotypical gaze. Many of us are bullied at school and sometimes even at home. Even if we aren’t ourselves victims of physical or emotional violence for being different, we are often witnesses to such abuse directed at others like us. One way or another, we watch as our world discourages difference at all costs. The world (and all of its loud noises, sudden movements, and complex social interactions) is often too loud, too much, and too exhausting. And on top of it all, suppressing my need to stim feels like more than just resisting an urge to cough or laugh or smile; it feels like a betrayal. I am sending a message to my body and my mind: Your natural ways of being are unacceptable. If I determine that it’s safe for me to stim, (and certain environments and situations are not safe to be recognized as neurodivergent) then I need to stim. As an autistic person, one of the most radical acts of self-proclamation I can engage in during my day-to-day life is as simple as flapping my hands. It doesn’t matter if I’m alone in my apartment or if I'm in a crowded, public space. Visibly autistic movement is one of the most powerful ways that I as an autistic person can claim self-worth in this world. I wish I had grown up knowing that stimming when I need to stim is a way of telling myself that who I am is okay.

Autism 101

David Cameron Staples (aka Catsidhe), Autism 101 on Catsidhe

Autism 101

I did a talk, and the second time I gave this talk, it was recorded. (Well, most of it. The last couple of minutes of Q&A were dropped because the first five minutes was spent swearing over getting the slides working. But that first five minutes has been cut, so it's straight into the talk.)

It's called Autism 101, and seems to have been well received.


It turns out that advocacy is hard, especially if you have a condition which affects communication with Neurotypical people, because about 90% of advocacy is in convincing NTs to help. And, of course, it is difficult to convince people to help with a condition which affects communication if you have a condition which affects communication, because Irony is a universal law alongside Gravity and Stupidity.

And it's especially hard when the responses are mostly along the lines of "That's great, that's awesome, that's a really good project, you're doing great stuff here, but you can't have what you're asking for." It's navigating a labyrinth, where most of the paths lead to dead ends, but the very act of getting there has made other paths unavailable. No, really, the movie Labyrinth is a very good analogy for it. The first trick is finding a way to even get into the labyrinth, and then you have to find out how to progress from the outer ring, and then it's dead ends and changing paths and oubliettes and goblins and people who may be helping and may be sending you on a wild goose chase, and you can never tell which. It's exhausting.

But I keep doing it because I can, on behalf of the ones who can't, so that they don't have to. Thus all the hard work and fighting for each small win. A talk at a conference, which turns out to be popular. Eventually, soon, a website to tell autistic students how better to deal with being autistic students and their teachers and peers how to deal with them. And eventually, I'm hoping to make that website include information for staff on the spectrum. And then for people who think they might be on the spectrum (because if you are on the spectrum but don't know it, then you will feel not included by information stated to be for autistic people because you don't know whether it applies to you or not and don't want to assume, even though that exact feeling is in itself a sign that it probably does apply to you and did I mention Irony as a universal force?). And for parents who think they have autistic children and don't know what to do about it (and don't know where to go for help, and might wonder what's so bad about Autism Speaks anyway).

And eventually (maybe sooner than I dared hope) there will be quiet spaces on campus marked on the map (for those who know to look). There will be quiet rooms set aside for the use of autistic people, to recover a spoon or two between classes. There will be not just information, but assistance, and advocacy, and maybe even community between the autistic members of the university community, and beyond.

This isn't all me, by any stretch. I have a co-conspirator, who is also on the spectrum, and is also pushing and talking to people and making contacts and running at the limits of her spoons, and she has achieved more than I would have been able to alone. Still, it's basically just the two of us doing this (and both of us have actual jobs that we're doing at the same time). But we're pushing through, as best we can. And if we're successful we will know it because then it will not just be us two anymore.

Because this is needed. I have personally met people who are worried about their children and didn't know how to help them. Who are autistic and in the closet, whether they're passing and successful or being bullied and are struggling. Who don't even know they're on the Spectrum, and privately worry about why they're different and why they can never let those difference be seen. These aren't hypotheticals, these are real people, and they all deserve better.

Autistic people who are struggling need assistance, and, because Irony, they need help to even ask for that assistance.

Autistic people who have been passing and successful deserve to be able to own their autism and wear it with pride. And that's not just for them, because autistic people generally need to see people who are autistic and succeeding. We need role models. Because so far the only autistic people most people see are on the media, and they are almost universally freaks, jokes, or both. We need people to see us as people, and, because Irony, those of us who have succeeded have typically done so because the first thing that they learned was how to hide it. The picture of autism is of failure because success is invisibility. The autistic people who are struggling need to be able to see that it doesn't have to be that way. That they don't have to be ashamed of who they are. And the parents of autistic children need to able to see that, despite what they may fear, it doesn't have to be a tragedy. That their children too can be proud of who they are.

Brain fog autistic speaking spray 2018

Autismdoggirl, Brain fog autistic speaking spray 2018 on AAC Apps, Service Dogs, and Autistic life things

Brain fog autistic speaking spray 2018

Ok yes this is a scattered mess thinking is had right now I’m sorry

t’s autistic speaking day but it’s also the day after Samhain (Halloween ) so my brain is tired and I feel brained, I don’t know much what to say, I tell myself I need to remember to conserve my spoons and write this a week or a month ahead, it’s not like I don’t have plenty of blog ideas that come and go unwritten because I don’t get the spoons to sit down to write them down so they go un written. However once again that didn’t happen this year so this year I’m doing a short half processing spontaneous post, but perhaps that is most appropriate, to honor the day of rest and accept my own need for saving spoons, to not strain to make a perfect logical thought out articulate piece about my right to be as a human, or how being Autistic is , or about the rights to communication access or how autistic people are constantly devalued and talked over and how we are taking this day back to have our voices heard  because at the end of the day no owns value should be based on our ability to explain these things to you in a week though out way or to word and all communication is valid this is autistic speaking day and for today I’m communicating more with gestures than AAC and that’s ok my thoughts aren’t clearly typed and skcattered and still I’m autistic and human and my life aphasia value this way as doe every autistic no mater how we communicate or how much we appear to be aware or understand, our voice in all forms should speak of autistic experience and our live still have value. We shouldn’t need to prove these for you to accept theses

Amplifying Autistics

Nightengale, Amplifying Autistics on Dreamwidth

Amplifying Autistics

I’ve stopped reading books about autism written by non-autistic people.

Neurotribes? I’ve read two dozen reviews. I haven’t read the book. Yes, I know it’s well researched and well written. I’m not convinced it has a lot of information that would be new to me. And I’m tired of reading books about autism written by non-autistic people. Also, I’m tired of the calls for quotes on autism now going to Steve Silberman. Yes, he’s done some good ally work. Yes, it’s better than the quotes going to Autism Speaks. No, it’s still not OK.

Uniquely Human? I skipped that one too. I’ve read other Prizant. He talks a good talk, but he still clearly sees non-autistic ways of communicating and playing as superior. He’s not as much of an ally as he tries to say he is.

I still read research articles written by non-autistic people. I have to stay up to date for my work. I don’t always know the neurotype of researchers, anyway. Maybe someday, I can extend my policy to research.

Read More Here 

The Joys of Autistic Life

Devin S. Turk, The Joys of Autistic Life on The Autistic Void

The Joys of Autistic Life

Let’s say there’s a dial control that determines how intensely each person experiences the world at any given time. Think of a pain scale at a doctor’s office, or maybe a knob on a car radio.  If most neurotypical or allistic (non-autistic) people’s dials can turn from one to ten, then mine goes beyond ten- mine can turn to eleven or thirteen or maybe even fifteen.  My dial and the ability for it to point past ten is a very integral part of what it’s like for me to live my life on the autism spectrum.  It means that I have the tendency to feel things very intensely: both the good and not-so-good.  This dial affects each facet of my life.  It affects my physical senses, like hearing and taste.  My ability to empathize with others.  All of my emotional states.  Everything about my perceptions and my responses to everyday life can turn past the number ten.

It’s certainly not always easy being autistic. Whether it’s coping with sensory overload, emotional burnout, or feeling like an outsider in a world that’s not built for people like me in mind, I have plenty of not-so-great days.  But being a human isn’t always easy either, and to me, being autistic is as simple and as complex as this: it’s a way of being human. I decided to write this essay about the joys of being autistic after I recently came across the twitter hashtag #AutisticJoy, in which autistic people tweet about things they love about their lives on the spectrum.  We all have good days, bad days, and days in between.  We also all have activities or objects or people that bring us comfort and joy.  In today’s post, I’m going to tell you about a few of my favorite things that make the bad days better and the good days the best as an autistic person.  These are my joys of being autistic, which for me, are also the joys of simply being.

1. Stimming

Stimming (or self-stimulatory behavior) is something many autistic people do to regulate and express ourselves.  It can be a way to try and turn the dial back down to a more manageable number if we want, or a way to communicate an internal state.  Classic examples of stimming include repetitive motions like flapping one’s hands or rocking back and forth, but each autistic person stims differently.  When I get suddenly excited or happy about something, I often jump up and down and flap my hands in a wild frenzy, which is an action I and other autistic people call “happy flapping.”  This is as natural and as instinctive to me as the urge to laugh at something that’s funny, and I love doing it.  Some say that laughter is the best medicine, but I say it’s happy flapping.

2. Special interests

Sure, everyone has hobbies and passions.  But an autistic person’s special interest is next-level.  The common stereotype is an extreme love of trains, and I will admit that even I went through a train phase for a while as a young teenager.  But special interests can be anything.  They can be specific animals, plants, or places.  They can be activities, like different sports or types of games:  Baseball. Ultimate frisbee.  Scrabble.  They can be TV shows.  Movies. Academic subjects.  Video games.  Special interests can be can even be objects!  Computers.  Lampposts. Skateboards.  Icebergs…I think you get the idea.  You name it, it’s probably somebody’s special interest.  Special interests provide a kind of security, a safe haven in this loud, unfriendly, allistic world.  At the end of a long day around people who I feel like don’t understand me, I’ll always have my special interests to come home to.

3. The online autistic community

Autistic people are everywhere.  We attend your schools.  Work in your favorite coffee shops.  We might be in front of you in line Post Office. We are your neighbors, your friends, your family.  You might recognize that we’re autistic, or you might not…but we’re here regardless.  Due to my tendency to engage in social masking, most people I interact with likely have little to no idea that I’m on the spectrum unless I choose to disclose to them. It’s tiring, to say the least. But there’s one communal space that doesn’t pressure me to conform to neurotypical standards of behavior: online. For myself, it started with YouTube when I was about thirteen.  Typing the words “Asperger’s Syndrome” into the search bar was like opening a door to an entirely different universe.  I was met with page after page of search results, a never-ending list of videos by people vlogging about their lives on the spectrum.  Thirteen-year-old me had discovered the autistic community, and it was all at my fingertips.

Today, I’m a part of about two dozen or so Facebook groups, Twitter chats, and special hashtags created to unite autistic people on the web.  The online autistic community, (the autistic self-advocacy and disability rights community in particular) has truly transformed my thinking around what it means to be a part of a marginalized group.  We post jokes and memes about autistic life, strategies for managing tough situations, realizations about living in our society as neurodiverse individuals, etc.  And most importantly, there is support.  Just a click away, there are people I know I can connect with because they experience struggles and triumphs through the lens of the autism spectrum, just like I do.

Whether I’m happy-flapping, doing research about my latest special interest, or participating in an online discussion with like-minded folks, there are some pretty great things about being autistic.  (And I’ve only listed three!)  Being reminded of the positive things helps the bad days ache a little less.  Sure, there are plenty of not-so-great things about living as a person on the spectrum. Most of the items on that list, however, are not necessarily because of autism itself.  Autistic people are navigating our way through a society that has a long way to go, especially when it comes to accessibility for and acceptance of those whose bodies and /or brains operate in ways that deviate from the current norm…But that’s a post for another day.

There is a common narrative in our society which tells us, in subtle and explicit ways, that disability is inherently tragic, that difference is wrong, and that autism is some kind of ailment that is to be prevented and cured.  In my opinion and lived experience, that couldn’t be further from the truth.  I think that in discussing and amplifying the wonderful parts of autistic life, we can all chip away at that toxic narrative, and hopefully build a better one that finally has the best interests of autistic people everywhere at heart.

The Country of Autistic People

Ben Edwards, The Country of Autistic People on The Autist Dharma

The Country of Autistic People

Imagine for a moment

A country for just autistic people,

NT and allistics citizens through marriage or birthright,

But still a place all to ourselves.

 

Imagine people being allowed to walk around freely at gatherings, meetings, and events,

No stimming repression or forced eye contact.

Imagine no alarms or bells that hurt our ears,

Bookstores, television shows, and movies all with accurate and positive representation of autistic characters.

 

Imagine less than ten percent autistic unemployment,

No one forcing you to wear the tags on clothing,

Your food sensitivities are respected everywhere you go,

No forcing you to socialize when you are so low on energy.

 

Imagine that “special interests” were not suppressed,

Where autistics do not have six times the national average suicide rate,

Domestic violence is not a disproportional issue,

No person wearing a puzzle piece, lighting blue lights, comparing having an autistic child to being a combat veteran.

 

Universities are packed with students using fidget spinners, chewy necklaces, etc.

No college professors spreading lies and disinformation about autistics,

Maybe the rate of autistics with epilepsy, social anxiety, depression, and PTSD is less than it is in the world we know,

Health care is what socially hegemonic neurotypicals have come to know.

 

Picture a world where it was not unusual for a child to go to an autistic in a divorce proceeding,

Therapy is not eight hours a day inside being taught to hate and repress yourself for external reward.

Picture a place like the on-line groups we know and love,

But offline, with houses, cafes, schools, hospitals, banks, post offices, and government buildings.

 

Maybe an observatory like the Space Needle, Fernsehturn Berlin, Oriental Pearl Tower,

Sovereign building like the White House or Buckingham Palace,

Business and communication centers like Sears and Willis Tower, the Empire State Building, the Hancock Center,

Bridges, theaters, architectural monuments.

 

Ok, not really a possibility.

Not a place where nothing ever goes wrong.

No injustice ever happening the way it does when society is mostly NTs.

But I would like to see all races, faiths, sexual orientations with business and government done in dozens and dozens of languages.

 

Maybe it is not a really possibility,

But sometimes, when times are tough, it is nice to have a place to escape to,

If only in your mind.