Alex Kronstein posts Acceptance should not be contingent on how useful we are to the rest of the world
I recently saw this on Twitter:
"Greta Thunberg is the perfect demonstration of non-autistic people accepting us if we are of use to them - and demonizing us if we aren't.
When I behave like her, I don't get applauded - I get punished.
Authentic, natural autisticness is NOT accepted in our society."
Yes. All of this.
I would add that this is exactly why NT parents dismiss us and demonize us more often than not....because they don't see #ActuallyAutistic people as being useful to them.
And it's a huge problem when we discuss non-speaking or so-called "severe" autistics.
And when we discuss how harmful ABA is? Well.....
I could go into lengthy detail about how often the NT parents go after us for that. On the whole, NT parents don't give a shit about us, because we won't tell them how wonderful they are and confirm their martyr complex.m
To raising Autism awareness and Acceptance, and battling negative stereotypes about Autism. To advocate for the inclusion of Autistic people in the community. To offer a forum to broadcast our stories and thoughts, and to help the messages of Autistic people and non-Austistic allies reach as many people as possible.
Saturday, November 2, 2019
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
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
#Autisticsspeakingday, tenth edition
Jane Strauss posts #Autisticsspeakingday, tenth edition on Facebook
Here we go- and one more time, autistics speak on the interwebs, in our own voices.
The original Autistics Speaking Day was conceived in response to a poorly conceived allistic-designed attempt to mimic what it is to be an autist. It seems they thought that if people gave up internet communication for a day, they would know what it is to be an Autist. Ironic, as most of my autistic community 9and that of many others) is centered on the Web. So, some activists (can’t at the moment remember who) came up with the idea that we would bombard that same web with our own thoughts, feelings and concerns. We have been doing that ever since.
Landmark anniversaries are often used for taking stock of progress or changes, and I think I’ll do a little of that. What is different from 10 years ago?
Ten years ago autistics were bringing to the attention of the general public how hateful and organization self-named as Autism Speaks was, hateful of and to autistics. We were pointing out that it had no autistic people on its Board, and less than 2% of its budget actually provided assistance to autistics or our families. As of their most recent available IRS 990, a year ago, AS has a single #actuallyautisticadult on its Board, term set to expire at the end of 2018, and about 1.5% of its budget actually goes to services and grants for families and autistic people. No significant change there.
Ten years ago, autism was represented as a malady of little white boys. Now, adults, females, and nonwhite people have been recognized as being impacted too. More of us are now in the professional limelight as well. So, some improvement.
Ten years ago, the manipulated research by Andrew Wakefield attributing MMR immunizations as a major cause of autism was still widely available. It would be close to another year before his research was discredited, the paper retracted, and his medical license revoked. Unfortunately, despite these actions, a significant number of individuals continue in that false belief.
Ten years ago, schools were pretty regularly failing to comply with IDEA, provide free and appropriate public education, and meet students’ needs. There were significant reports of abuse. Especially low income and nonwhite special education students were likely not to graduate, and to end up in the juvenile or adult correctional systems. Unfortunately, though there are now more specialized programs for autistic students, failure to provide adequate education, ongoing abuse, and the school to prison pipeline still make the news at least weekly.
Ten years ago, there were a few small organizations of, by and for autistic adults. Now there are more, and a number of publications have been developed collaboratively by these organizations. There has definitely been improvement in the area of advocacy and program development.
Ten years ago, I had been formally diagnosed only five years before, thought I had found my people, and was attending autism conferences. In the intervening ten years, I have come close to burnout, found that my dual status as Jew and old enough to be the majority’s mom or grandma seriously limited my enjoyment and acceptance by those people, and decided that the age gap may be too large to bridge and I lack the spoons to continue such attendance. Verbal abuse and unjustified assumptions about my beliefs and motives contributed. This is neither bad nor good, it exists, and I wish those folks well in reinventing the wheel without counsel.
Ten years ago, when autistic students aged out of the K-Transition programs, they fell off a service cliff, unless they were extremely brilliant, came from a wealthy background, or both, and could use their exceptional thespian skills to successfully fake neurotypicality. Now, the cliff is still there though every day or two I see people posting about another nice nonprofit with a day program (with or without any employment training, and usually without pay for the workers). Invariably, when I point out these warts, I am tone policed and told that they mean well and we should accept the crumbs thrown at my community. Meh.
Ten years have passed. I am older, tireder, presumably wiser, and still fighting a social service system designed to keep disabled and low income people in our place. That system, under el Tangerino’s Regime, is far from improving. Our family situation has improved marginally, no thanks to the organizations claiming to exist to better the situation of “people with autism” (as if our neurology is somehow separable from our essence). We have all been diagnosed with immune dysfunctions that we are trying to treat but which explain a lot. I have had more experience in using the doublespeak required by Governmental Agencies and Programs to justify their limited largess. The biggest challenges still are garden variety helpers, though an exceptional one will sometimes show up. I am thankful that my son has aged out of the tender mercies of the Minneapolis Public Fools.
Ten years ago, our state had no governmental organization oriented to the specific issues that autism raises. Now there is a quasi-governmental group, I participate in it, and the jury is out as to its impact.
Ten years ago, I still had hopes of getting back on a career track. At 65, that seems less likely.
Ten years ago the engine of Autistic Adult Energy had just begun to roll. (There, I finally relate this to the photo at the top, and a common interest for many autistics) It’s been slow to pick up speed. Perhaps after another ten years, the Neurotypical Ruling Class will develop some level of empathy and our lives will become more livable. Perhaps then the average age of death for autistic adults will approach that for the Neurotypical population. Perhaps then it will become more possible for autistic people to follow our dreams, work for income, pay the bills, live included in the larger community and be understood as the unique individuals we are.
Maybe in another ten, or twenty, or thirty years there will be no need for Autistics Speaking Day. We can but hope.
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.)
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
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?
But I don't feel disabled
Catsidhe (David Cameron Staples) posts But I don't feel disabled
(Self-)Advocacy is hard, because it doesn't feel, most of the time, like a disability.
That needs unpacking.
The advocacy work I'm trying to do has a lot of overlap with advocacy for wider disability inclusion and accessibility. If I'm successful, it's not just for the neurodiverse, it's for the vision impaired, the mobility impaired, the hearing impaired, everyone. It requires making common cause with them, and at least at the start, advocating on their collective behalf (because somebody has to, and if anyone else is, no-one seems to know about it). But I don't feel like I belong in the same category as they do.
Because what is "disability"? It seems that every attempt at defining it comes out different, and the only commonality is that it's like "obscenity": you know it when you see it.
At the core, it's a condition which results in a more or less permanent impairment in function. But that carries its own definitional problems. A family with achondroplasic dwarfism, in their own specially designed environment, might not notice any particular issue. Until they step outside into a world designed for "normal" people. Or, as the terminology is preferred, "typical" people, because we're talking about mathematical norms over populations. So the first battle is to define your population. If you had a modern environment designed for Maasai, and a !Kung family moved in, would they count as disabled because of their physical difficulties? Or vice versa?
Let's take it further: Dwarfism isn't just caused by achondroplasia, and there are so many possible causes, including just because, that the definition for dwarfism as regards being a disability is being 4'10" or less as a fully grown adult. But it's possible for treatments of conditions like achondroplasia mean that growth can be given a kick along. It's entirely possible to be a 5'5" dwarf. Are they still disabled?
Then there's where the line is drawn regarding severity: someone with a C5 spinal cord break is quadriplegic, and everyone would agree that they're disabled. Someone with an L4 break is paraplegic and also definitely disabled. Someone with a below the knee amputation is definitely disabled, even if, like Adam Hills, you wouldn't usually even know unless they told you. I just discovered that I have a slight congenital deformity of the talus bone in my ankle, which results in a twist in the foot, which results in chronic tendonitis and achilles tendon pain, and I've just got orthotics to address. Does that count as a disability?
Then there's where the line is drawn regarding permanence. The flu is clearly not a disability, no matter how much medical care you might need to live until it passes. The paralysis which results from polio clearly is a disability, as is the results of post-polio syndrome decades after any recovery. A broken leg is an injury, not a disability. The results of many broken bones can add up to a disability, such as for someone with osteogenesis imperfecta.
Where am I going with this? Executive summary: the concept of "disability" isn't that easy to define.
And I don't feel disabled. Usually.
How I am is how I've always been. In the normal course of events I am just how I am.
Normally.
And then a tradesman comes out for an emergency visit, and it turns out I have absolutely no idea how to even ask how to pay him, or how much. Or when the conversations around my corner of the open plan office all talking over the top of each other penetrates even the music playing through noise cancelling headphones and I have to grit my teeth and fight the urge to stand up and scream at them to shut up.
But still, I have been diagnosed as on the Autism Spectrum. And the fact of that diagnosis means that, by definition, my symptoms add up to clinically significant impairments. I am, by definition, disabled. But putting myself into the same company as someone who uses a wheelchair or is blind, feels like a form of fraud.
And that's the same wedge that some Autism parents use to divide "high functioning" and "low functioning" autists. "You're not disabled, not like my child. You'll never understand what it's like for my child. Don't you dare to try to speak for my child."
Never mind that if you child can't tell you what it's like from their point of view, maybe people like me can. Never mind that there is no dividing line between "high" and "low" functioning, and that it's a grossly oversimplistic binary division of a complex and continually varying context dependent spread of capabilities and deficits. How about you let me advocate for me, and for people like me. How about you stop cutting my legs out from under me by shouting out my own private doubts, as if I hadn't been obsessing over them to an extent which practically of itself proves them false, as if I hadn't thought of any of them, as if the answer was as simply and easily expressed as the question.
Advocacy is by its definition the act of asking for help. Help for yourself and for others. (And that latter part means that there's more than my own wellbeing at stake if I stop.) And part of the very definition of the condition I'm asking for help with is that I don't know how to ask for help. Certainly not from the people I need to convince to provide it.
Christ, I can't even get some of them to answer my emails.
But I'm sure as hell not going to stop. Because, as I keep reminding myself, I'm doing this because I can, so that the next poor bastard doesn't have to.
It's just that I don't feel like I belong in the group for whom I'm doing it.
(Self-)Advocacy is hard, because it doesn't feel, most of the time, like a disability.
That needs unpacking.
The advocacy work I'm trying to do has a lot of overlap with advocacy for wider disability inclusion and accessibility. If I'm successful, it's not just for the neurodiverse, it's for the vision impaired, the mobility impaired, the hearing impaired, everyone. It requires making common cause with them, and at least at the start, advocating on their collective behalf (because somebody has to, and if anyone else is, no-one seems to know about it). But I don't feel like I belong in the same category as they do.
Because what is "disability"? It seems that every attempt at defining it comes out different, and the only commonality is that it's like "obscenity": you know it when you see it.
At the core, it's a condition which results in a more or less permanent impairment in function. But that carries its own definitional problems. A family with achondroplasic dwarfism, in their own specially designed environment, might not notice any particular issue. Until they step outside into a world designed for "normal" people. Or, as the terminology is preferred, "typical" people, because we're talking about mathematical norms over populations. So the first battle is to define your population. If you had a modern environment designed for Maasai, and a !Kung family moved in, would they count as disabled because of their physical difficulties? Or vice versa?
Let's take it further: Dwarfism isn't just caused by achondroplasia, and there are so many possible causes, including just because, that the definition for dwarfism as regards being a disability is being 4'10" or less as a fully grown adult. But it's possible for treatments of conditions like achondroplasia mean that growth can be given a kick along. It's entirely possible to be a 5'5" dwarf. Are they still disabled?
Then there's where the line is drawn regarding severity: someone with a C5 spinal cord break is quadriplegic, and everyone would agree that they're disabled. Someone with an L4 break is paraplegic and also definitely disabled. Someone with a below the knee amputation is definitely disabled, even if, like Adam Hills, you wouldn't usually even know unless they told you. I just discovered that I have a slight congenital deformity of the talus bone in my ankle, which results in a twist in the foot, which results in chronic tendonitis and achilles tendon pain, and I've just got orthotics to address. Does that count as a disability?
Then there's where the line is drawn regarding permanence. The flu is clearly not a disability, no matter how much medical care you might need to live until it passes. The paralysis which results from polio clearly is a disability, as is the results of post-polio syndrome decades after any recovery. A broken leg is an injury, not a disability. The results of many broken bones can add up to a disability, such as for someone with osteogenesis imperfecta.
Where am I going with this? Executive summary: the concept of "disability" isn't that easy to define.
And I don't feel disabled. Usually.
How I am is how I've always been. In the normal course of events I am just how I am.
Normally.
And then a tradesman comes out for an emergency visit, and it turns out I have absolutely no idea how to even ask how to pay him, or how much. Or when the conversations around my corner of the open plan office all talking over the top of each other penetrates even the music playing through noise cancelling headphones and I have to grit my teeth and fight the urge to stand up and scream at them to shut up.
But still, I have been diagnosed as on the Autism Spectrum. And the fact of that diagnosis means that, by definition, my symptoms add up to clinically significant impairments. I am, by definition, disabled. But putting myself into the same company as someone who uses a wheelchair or is blind, feels like a form of fraud.
And that's the same wedge that some Autism parents use to divide "high functioning" and "low functioning" autists. "You're not disabled, not like my child. You'll never understand what it's like for my child. Don't you dare to try to speak for my child."
Never mind that if you child can't tell you what it's like from their point of view, maybe people like me can. Never mind that there is no dividing line between "high" and "low" functioning, and that it's a grossly oversimplistic binary division of a complex and continually varying context dependent spread of capabilities and deficits. How about you let me advocate for me, and for people like me. How about you stop cutting my legs out from under me by shouting out my own private doubts, as if I hadn't been obsessing over them to an extent which practically of itself proves them false, as if I hadn't thought of any of them, as if the answer was as simply and easily expressed as the question.
Advocacy is by its definition the act of asking for help. Help for yourself and for others. (And that latter part means that there's more than my own wellbeing at stake if I stop.) And part of the very definition of the condition I'm asking for help with is that I don't know how to ask for help. Certainly not from the people I need to convince to provide it.
Christ, I can't even get some of them to answer my emails.
But I'm sure as hell not going to stop. Because, as I keep reminding myself, I'm doing this because I can, so that the next poor bastard doesn't have to.
It's just that I don't feel like I belong in the group for whom I'm doing it.
Friday, November 1, 2019
On misunderstandings again
Leeanne Marshall writes On misunderstandings again on oneautisticperson
Autistics Speaking Day 2019: On misunderstandings again
Autistics Speaking Day 2019: On misunderstandings again
Well, it is the 1st 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.
Being autistic... in September
Joelle Marie posts Being autistic... in September. on Thoughtistic
Content Warning for discussion of autistic vulnerability to suicide; no graphic detail, focus on outreach, prevention, and support
Being autistic... in September
Content Warning for discussion of autistic vulnerability to suicide; no graphic detail, focus on outreach, prevention, and support
Being autistic... in September
September is for Suicide Prevention but also…?
Script the script, I pray you, trippingly on the tongue
Nightengale writes Script the script, I pray you, trippingly on the tongue
November first is Autistic Speaking Day.
https://autisticsspeakingday.blogspot.
I’ve participated a few times before
Writing the brochure I want to read in the world (https://nightengalesknd.livejournal.
Autistic ear, autistic voice
https://nightengalesknd.dreamwidth.org/
Speaking from the shadows
https://nightengalesknd.dreamwidth.org/
Autistic speaking day, 2012
https://nightengalesknd.dreamwidth.org/
And here goes
I speak. I speak a lot. Frankly, I’ve described myself as aggressively verbal, and I’m not paying myself a complement when I say it. I don’t always know when to stop speaking. I don’t always hear the pauses in conversation. As a child, other children told me I sound like I swallowed the dictionary. I always found that ridiculous because I’d never read the dictionary. I did read the encyclopedia, although after the age that insult mostly wore off. I love words and looking for the right word and making up a new word if there isn’t one.
Most autistic people speak. I’ve seen an estimate that 20% of autistic people don’t speak verbal words, but I haven’t found the study(ies) to substantiate this. I did a chart audit a few years ago of 96 consecutive autistic patients age 3 or older and found about 80% used some verbal language and 65% used verbal sentences. Obviously, verbal people are more likely to be diagnosed at a later age, if at all.
Autistic people who speak often speak differently from neurotypical people in ways that get noticed.
Today I’m going to talk about scripting.
Lots of autistic people use scripts, at least some of the time.
Script (noun): the written text of a play, movie, or broadcast. (google)
Script (verb): to use memorized phrases or larger strings of language for a variety of communication and self-regulation purposes in a way that is not typically used or expected by neurotypical people (Nightengale)
Repeating lines from a TV commercial would be scripting. Coming home from school and repeating sentences spoken by the teacher would be scripting. So would learning to say “I’m OK, I’m OK” as a strategy to calm anxiety.
So would writing out a plan ahead of time before calling a store or doctor’s office to ask questions
So would be coming up with the language from scratch to answer a question or tell a story, and then using that same language many more times whenever the question is asked or the story is relevant.
I don’t use a lot of scripting that is generally flagged as a script. At least, I don’t think I do. But I’m realizing more and more just how many scripts I use.
Context is everything
“Speak the speech, I pray you, trippingly on the tongue”
What does it mean? How will someone respond?
Well, if I’m onstage playing Hamlet, this is expected language. But assume I’m not.
Read More Here
November first is Autistic Speaking Day.
https://autisticsspeakingday.blogspot.
I’ve participated a few times before
Writing the brochure I want to read in the world (https://nightengalesknd.livejournal.
Autistic ear, autistic voice
https://nightengalesknd.dreamwidth.org/
Speaking from the shadows
https://nightengalesknd.dreamwidth.org/
Autistic speaking day, 2012
https://nightengalesknd.dreamwidth.org/
And here goes
I speak. I speak a lot. Frankly, I’ve described myself as aggressively verbal, and I’m not paying myself a complement when I say it. I don’t always know when to stop speaking. I don’t always hear the pauses in conversation. As a child, other children told me I sound like I swallowed the dictionary. I always found that ridiculous because I’d never read the dictionary. I did read the encyclopedia, although after the age that insult mostly wore off. I love words and looking for the right word and making up a new word if there isn’t one.
Most autistic people speak. I’ve seen an estimate that 20% of autistic people don’t speak verbal words, but I haven’t found the study(ies) to substantiate this. I did a chart audit a few years ago of 96 consecutive autistic patients age 3 or older and found about 80% used some verbal language and 65% used verbal sentences. Obviously, verbal people are more likely to be diagnosed at a later age, if at all.
Autistic people who speak often speak differently from neurotypical people in ways that get noticed.
Today I’m going to talk about scripting.
Lots of autistic people use scripts, at least some of the time.
Script (noun): the written text of a play, movie, or broadcast. (google)
Script (verb): to use memorized phrases or larger strings of language for a variety of communication and self-regulation purposes in a way that is not typically used or expected by neurotypical people (Nightengale)
Repeating lines from a TV commercial would be scripting. Coming home from school and repeating sentences spoken by the teacher would be scripting. So would learning to say “I’m OK, I’m OK” as a strategy to calm anxiety.
So would writing out a plan ahead of time before calling a store or doctor’s office to ask questions
So would be coming up with the language from scratch to answer a question or tell a story, and then using that same language many more times whenever the question is asked or the story is relevant.
I don’t use a lot of scripting that is generally flagged as a script. At least, I don’t think I do. But I’m realizing more and more just how many scripts I use.
Context is everything
“Speak the speech, I pray you, trippingly on the tongue”
What does it mean? How will someone respond?
Well, if I’m onstage playing Hamlet, this is expected language. But assume I’m not.
Read More Here
How do you see me?
Nora writes How do you see me? on Nora W - The Self Aware Autistic
Content Warning for Anxiety and Overthinking
Content Warning for Anxiety and Overthinking
- Now That You Know -
Now that you know I’m autistic,
how do you see me?
how do you see me?
Do you just see my anxiety and awkwardness?
Do you judge my miscommunications and lack of social awareness by normative standards?
Do you judge my miscommunications and lack of social awareness by normative standards?
My facial expressions mismatched to my heart.
My volume not modulated properly.
My volume not modulated properly.
Am I made up of more than
my reactions?
my emotions?
my inability to communicate without wearing my heart on my sleeve?
my reactions?
my emotions?
my inability to communicate without wearing my heart on my sleeve?
Am I valued?
Am I worth more than just
my talents?
my abilities?
my dependability?
my loyalty?
my talents?
my abilities?
my dependability?
my loyalty?
Do you see me
paralyzed by social anxiety?
unable to reach out
to initiate conversation?
longing to be included?
paralyzed by social anxiety?
unable to reach out
to initiate conversation?
longing to be included?
I try.
It takes everything within me to speak.
to find the words.
to take a chance on being seen.
to stay.
to not run away and hide,
out of sight.
to find the words.
to take a chance on being seen.
to stay.
to not run away and hide,
out of sight.
I still fail.
I try.
I fail.
I try again.
I still fail.
I try.
I fail.
I try again.
I still fail.
I just want to sit here
and stop trying so hard,
but I don’t have it in me to quit.
God won’t let me.
and stop trying so hard,
but I don’t have it in me to quit.
God won’t let me.
I want to turtle up
but I can’t go back in that old shell.
but I can’t go back in that old shell.
Everything I’ve done
has been to get me
further away from where I started.
has been to get me
further away from where I started.
Am I still unnoticed
except when I melt down?
Am I still unwanted
except when I have something to offer?
except when I melt down?
Am I still unwanted
except when I have something to offer?
Can I just be seen
Can I just be liked
Can I just be wanted
Can I just be accepted
Can I just be included
for being me?
Can I just be liked
Can I just be wanted
Can I just be accepted
Can I just be included
for being me?
(C) Nora W - The Self Aware Autistic
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.
"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.
Participants List 2018
Autistics
Sean Callaghan Life on the Spectrum (see content warnings)
Nicolette Cetrulo The Desexualization of Women with Disabilities Should Not Be an Unspoken Issue
C.L. Bridge To My Preteen Self on Autistics Speaking Day and "Actually, It's Crooked": Autism and Precocious Speech
Carolina Rutz Without Apology (See Content Warnings)
Autisticeducator Here’s the Thing About Language
Devin S. Turk Autism, Transmasculine Identity, and Invisibility , Behind The Mask , and The Joys of Autistic Life
Castiel Hannon Stimming
Cat Daly Eh, Who Needs A Brain Anyway? (See Content Warnings)
Becca Lory Hector, CAS, BCCS Where Are My Adult Autism Supports, Dammit?!
Courtney Johnson No, I’m Not “Overcoming” Autism
Kate Ross - Cherry Blossom Tree I have a lot to say (a poem)
endever* Happy Autistics Speaking Day!
Ben Edwards The Country of Autistic People
Leeanne Marshall Autistics Speaking Day 2018
Nightengale Amplifying Autistics
Fallon Mydske Autistics Speaking Day 2018
Jane Nine Years On from AS Day #1
Autismdoggirl Brain fog autistic speaking spray 2018
Anita M. King Body Language
Timotheus "T.J." Gordon, Jr. #AutisticsSpeakingDay2018 Post: A Call to Intertwine Race into the Autistic Community
Seven C. Den, I'm so fucking tired (see Content Warning), and Where was heaven?
David Cameron Staples (aka Catsidhe) Autism 101
Fiona Dry Eyes Album (See Content Warnings)
Tagm They Were Wrong
Julian Edward Frost Autistics' Speaking Day: Learning about autism, learning about myself
Allies
Florencia Ardon Why do we teach our kids to "behave"?
Allies
Florencia Ardon Why do we teach our kids to "behave"?
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