Monday, November 2, 2020

Autistics Speaking

Content Warning – Talk of abuse

 Jay from Jay's World writes

Autistics Speaking

I be ask why I believe should have all autistic voice hear.

I can only tell about me.

A Small Thing

Corina Becker  writes A Small Thing on No Stereotypes Here

Nothing stays the same. Everything changes. 

That's the opening for one of my attempts to write something today. It's a piece on depression. I got partway through trying to describe the deepest pits of despair and darkness, and then I realized I didn't really want to talk about that. 

Even taking out politics, I think we've all had enough of that this year. Heck, enough of that for the past four years. 

So, slight confession. I don't know exactly how anniversaries work and how they're calculated. I just know that on 15 October 2010, I wrote Real Communication Shutdown, which was followed by Autistics Speaking Day and Preparing to be Loud

It is now 2020, and 11 years later. And I'm not sure whether the 10th anniversary was last year or this year. I'm not very good at these sorts of things. But I counted the years on a piece of paper, and according to my count, it's been eleven years. 

It definitely doesn't feel like yesterday. This year alone has felt too much like forever for it to be yesterday. But I'm reminded of both the changes and the similarities, both the good and the bad. 

There are the obvious things: I live in a different location. I dress differently, my hair has grown and I dye it a different colour. 
Family drama has come and gone and most like will come again. 
I've learned that my body is not quite as reliant as I thought it was, and the gears of capitalism is wearing it down. 

And countless other things, the painful, the joyful, the sorrow, and the wonder. 

Including, the fact that this is the year that I am finally finishing my Disability Studies degree. As I type, I am in my last elective course: creative writing. One might think I can get by with minimum effort, and then pass. But they would be wrong. There are some frustrating aspects about the course; there are a lot of readings that show great misunderstandings and misjudgment towards genre fiction. It's a widespread attitude throughout academia that makes studying creative writing typically difficult. 

However, I'm making my own challenges for the class, taking the assignments as they're given and putting my own twist to them. And the result is that I'm finding myself more encouraged to write more.

The last few months, I've been making more things, sewing, embroidering and crafting. It's been a sliver of silver lining, and I wish I could just stay home and create.

I know that there are still troubles ahead of us, and I hold onto the fact that writing gives joy. That making things makes me happy and gives me reasons to start my day. It might be a small thing, sometimes, but sometimes a small thing is all a person needs to keep going. 

And sometimes, a small thing becomes a big thing, and lasts for years. 

Here's to making things. Here's to the small things. Here's to the big things. Here's to the things that just make us happy in these dark times. Let them keep us together. 

Sunday, November 1, 2020

Not Special Needs

 Ben Edwards

Not Special Needs

I do not have the need for people to stare at my eyeballs. I do not have the need for people to talk to me about weather, news, or celebrities. I do not have the need to conform to peer pressure, to always have company, or make up lies. I do not have the need to avoid in-depth, complete focus on particular topics or types of tasks. I have the need for people to understand that I cannot do somethings a certain way without being unduly stressed, regardless of my intelligence, college, career, or independent living prospects, without patronizing me or pitying me. I have the need to bring up and respond to issues in the autistic community that not everyone will agree on without being called divisiveness. I have the need for people to stop seeing visibility of needs like that of a blind, wheelchair using, or intellectually disabled person to be the equivalent of the reality of them. I have the need for people to stop being told which autistics my autism makes me qualified to speak for by non-Autistics. I have the need to stop being equated with lightning strikes, car wrecks, cancer, AIDS, diabetes, and combat situations. I have the need same need you have to have non-universal needs respected, even if I don’t have the power to force them on you. As an autistic, I am the greatest martyr, carry the greatest burden, For it is neurotypical needs that I have spent my life caring for, neurotypical needs that held back my career, made me go broke, made me feel isolated, meant my life couldn’t be my own, or I could not be myself. It was caring for the needs of 6 billion children on the neurotypical spectrum that made me be defensive and protective. I spend endless amounts of money, take countless hours out of work, have to schedule and keep appointments with professionals that aren’t covered by insurance to take care of the needs of neurotypical children. I am interrupted over four times a week by an incident involving a neurotypical child. I can’t be myself; my life is not my own. And so many neurotypicals are always easily offended. I can’t speak honestly, talk about more meaningful things than sports, or avoid eye contact without them dogpiling me, contacting my employer, or costing me my job. I feel like I’m walking on eggshells. As someone affected by neurotypicalism, I need support, not criticism. Neurotypical needs have caused me PTSD and depression, but in spite of all this, being a neurotypicalism parent, child, and sibling is the most rewarding thing I’ve ever done. But one thing is certain: I don’t worry what will happen to these kids after I die. #NeurotypicalismAwareness

Police and the Autistic

By Kat Bjørnstad
Content warning:  Institutional racism, institutional ableism, police brutality, psychiatric hospitalization, non-graphic discussion of sexual assault, bad language 

God help me, I am getting back into blogging (or making an attempt), and the subject I have chosen for my first post, on ASDay 2020 no less, is...this.

I must love hate mail.  And disappointment in humanity.

The years have made me more cynical, more skeptical, and more radical.  I have my reasons, and those close to me know them.  I have avoided my blog for good reasons as well, which I may eventually share publicly.  But it’s Autistics Speaking Day.  Corina Becker invented ASDay to speak out in the face of silence and erasure of Autistic voices.  I promoted it on Facebook because Corina motivated me.  

And this year is the 11th ASDay, marking its 10th anniversary.  I see things happening in our country that I can’t stay silent about, for both Autistic people and other minorities.  I never thought this would happen in America.

I am focusing on how the police deal with disabled people, but there’s a relationship with how they treat people of color, people with disabilities, women, and the LGBT community.  I have seen all of these things first hand.

I knew police were unfair when I learned that my grandfather was suspected of being on drugs following an accident.  The cause of his “slurred” speech and panic?  He was Deaf.  His wife was injured.

But you can trust the police, they said.  They’re there to protect you.

My hometown, Smithton, Illinois, could be classified as a sundown town.  Black people don’t live there for long.  Bricks get thrown through windows, people threatened, cars set on fire.  The police do not help these victims.  They further ostracize them.  They prevent them from getting justice.  They pull them over for suspicious behavior when they are just driving through town.  There’s not an official policy forbidding black people from living there, or from visiting.  That’s not how these things work.  It is simply understood.  And no one has any interest in changing it.

But they told me the police were my friends and would help me.  It seemed true, because I was white.  The police were generally helpful when I was young and I never had an exact reason to fear them.  Because there was no category I could fit into that they could use to discriminate against me.  

Of course, this is no longer true.

I was 17 when I was diagnosed as autistic.  There was a lot of, “If only we’d known!”  But I don’t think my life would be better if we had.  The first thing that happened was they questioned my ability to go to college.  I don’t doubt for a second that had I been identified as a child, they would have forced me into special education, given me ABA, removed my autonomy further.  

I was in my early 20’s when I was diagnosed with PTSD, and in my mid-20’s when I started developing schizoaffective disorder.  I was in my late 20’s when I was diagnosed.  You would be amazed how many people will take the opportunity to gaslight you when they can literally claim that anything they have done to you is a hallucination, or that any conclusion you have arrived at is a delusion.  

You would be amazed how often the people who do this are the very people you rely on for protection.

I wish I could be more specific.  It is extremely risky to discuss the specifics even with close friends.  I have personal experience with this but that experience is just too personal, and I apologize for vagueposting, but I have my own safety to consider.  So the examples that I give are going to be a little less personal, because that’s safer.

Cops can and will use your diagnosis against you.  Years ago, Lydia Brown posted about a woman who was forced to undergo psychiatric evaluation so she couldn’t make a rape report.  I shuddered with the rest of you, and prayed it wasn’t common.

A year or more ago, during one of my hospitalizations, there was another patient, a black woman in her mid-20’s, who was reluctant to tell her story initially.  She eventually admitted that she had been violently raped, and she didn’t know if the police were doing anything because they brought her there, to literally the worst hospital in the system.  The other patients and the staff were stumped.  “Did you want to hurt yourself?” we asked.  No, she was understandably upset about the assault, but hardly suicidal.  She was enthusiastic about therapy, and hoped to use it as an opportunity to improve herself.  She had a hopeful attitude, and while I admit her behavior was a little strange at times, it was hardly alarming and within the bounds of normal stress reactions.  

I have witnessed rape investigations firsthand, though, so maybe it shouldn’t have surprised me so much.  I never forget that.  Reporting crimes, if you’re a minority, can be dangerous to your health.  

They are trained to see certain indicators of anxiety as indicators of deception.  This is extremely dangerous for anyone with an anxiety disorder, or anyone really who is neurodivervent.  Can’t make eye contact?  Liar.  Stuttering during interrogation?  Liar.  So you’re thinking more training will help, awareness will help, that they will stop if they only know better.

No.  Give them an opportunity to fuck you over and they will.  Laws change according to their whims.  If they can use a diagnosis to lean on you, they will.  They will lie.  They will purposely trigger you.  They will twist evidence to make you look more unstable.  They will take someone else’s side without believing you or even giving you an opportunity to explain, because they’ve already confirmed you aren’t normal.  That gives them permission.

I can’t believe people are actually publicly identifying themselves as Autistic thinking that the police will act differently if they know.  They do it because they can, not because they have to.  People with disabilities are shot at an alarmingly high rate by the cops.  Ever seen what happens to wheelchair users at a protest?  Did the cops not know that those people probably couldn’t get up if they were yanked from their chairs and beaten?  No.  American cops know that when they shoot a disabled person, the response will largely be crickets.  

Note:  I am not saying that disabled people shouldn’t be prosecuted for crimes that weren’t due to their disability, or that a disabled person holding a knife should be ignored.  I am saying that the number of disabled people shot by police each year is disproportionate to the number of those in the general population.  Please, if you are Autistic and you think that makes being a violent incel-Nazi okay, stop that right the fuck now, because you are making it worse for us all.  

Also, if you defend Autistic murderers on this basis, especially for pay, especially when their status as Autistic is purely based on non-professional speculation post-crime, you can fuck right off.  (Yes, John Elder Robinson, I am talking about you, if it wasn’t obvious by how painfully specific I was.  So please whine about me on your Twitter, because surely I could have said you were going to get more of us killed without being so mean about it.)

What training cops are getting now is already problematic.  The organizations consulted are often those run by non-disabled people who do not adequately understand our problems and needs.  They often consider their own first.  They may mean well.  But Neurodivergent K has said more about presumption of benevolence than I ever could, and said it better than anyone else can.  

And time and time again, non-disabled people running disability organizations have proved unwilling to listen to disabled people.  They look out for their own self-interests instead of ours.  For example, to make up in the press for fatally shooting an autistic man, one police department made a visually painful Autism Speaks police car.  Autistic people really don’t like Autism Speaks. A$ happily takes money from neonazis and sues Autistic people speaking out against them.  Also this action allowed the police department to look good while making absolutely zero effort to examine how their policies were hurting disabled people.  Autism Speaks was complicit.

This has powerful implications with police involvement, because we may very well have to report that we are being abused one day, by people who can claim that they just want what’s best for us...and hey, officer, did you know they’re crazy?  This makes it incredibly risky for us to go to the police for help, because chances are slim that they’ll take our sides.  I have seen plenty of abuse victims in hospitals for being the one with the mental health diagnosis, while their partner is home calling them at the hospital explaining how they’re throwing away their shit.

If we can’t keep our behavior 100% calm when being rapidly questioned and even threatened with violence, if we can’t even avoid looking afraid, we must be dangerous.  They face no consequences for not taking us seriously, even if we die as a result, at their hands or due to medical neglect.  Maybe you get lucky, get the one officer in twenty who will treat you like a human.  But for us, police involvement just means our day could be getting a whole lot worse.  

I have had maybe a dozen interactions with police since I was diagnosed, and there was one single officer who was polite.  One.  Only one.  He was doing a welfare check, and was excited about my rats.  He understood my nervousness and didn’t take it personally.  I can’t get him every time I deal with the police though.  So I avoid them.  Every time a minority deals with a cop, it is Schrödinger’s cop.  

Police are not going to get better until they face consequences for their behavior.  Police in countries with accountability tend not to shoot people as often.  Iceland just had its first police shooting, and people mourned!  Here in America it’s just same shit, different day.

I am from St. Louis.  Racial disparity is very pronounced here.  There are certain neighborhoods you don’t go to if you’re white, and others you avoid if you’re black.  I remember the Ferguson riots.  Not long after that, at a Ferguson restaurant, every co-worker at a table my ex-husband was seated at was served except for one.  Let’s be honest, I don’t even have to tell you what race this guy was.  The white manager was unhelpful and wore a T-shirt proclaiming her having survived the riots.

Another example from home.  St. Louis County (separate from the city, just to make it confusing) is well known for running scams on mostly black drivers through ticketing and vehicle impound, to the point of clear illegal activity by the police.  There are towns there that rely entirely on writing tickets to black drivers.

My ex and I were driving through one of these towns, less than 500 residents.  We were ticketed.  When we went to court it was unbelievably crowded with mostly black people.  The only white people there besides myself and my ex were the police and court officers.  There’s no way that in a town that is 98% white that didn’t look suspicious to the powers that be.  No one said a word.  We paid our ticket, went back to our car, and talked about how fucked up it was.  I am unaware of the county taking serious effort to rectify this.  After all, there’s good money in racism.

Disabled people are suffering.  We cannot afford to ignore the BLM movement.  We face a similar struggle.

The police aren’t there to protect us.  They’re there to protect the interests of the rich and powerful.  Do you realize how many serial killers were ignored by (or in Dahmer’s case, assisted by) the police because the victims were considered disposable?  They aren’t even testing rape kits.  They don’t give two fucks about us.  We just make painfully convenient targets.

So if you call 911 because your kid is having a completely predictable issue related to his disability, and you call 911, and he winds up shot?  I blame the police first, of course.  But I also blame you.  Disabled people have been warning you.  Other minorities have been warning you.  You haven’t been listening.



#Black Lives Matter

#Disabled Lives Matter

In: A Look Into The World Of Autism

Content warning: First Person Language, medical model and generalization, Autism Speaks.

Sam Passer presents In: A Look Into The World Of Autism

Autistic talents in the workplace are going to waste

J.T. Buchheit

Autistic talents in the workplace are going to waste

The unemployment rate for autistic people is staggering. There are many differing statistics, but they all show an extremely high level of unemployment. A 2014 study from the Bureau of Labor Statistics had only 19.3% of the autistic population working or seeking job opportunities. This is a lower employment rate than that of any neurological disorder.

The worst part about this is that most employers are completely unaware of the benefits autistic people can provide a workplace. Many of us are extremely honest, diligent, and detail-oriented people, and we can flourish in many occupations that are beyond the entry-level status many people pigeonhole us into. The main reason for this lack of jobs is employers' preferred way to select candidates: personality tests and job interviews. I believe both of these are extremely unfriendly toward autistic people. The personality tests emphasize "soft skills" and often ask questions including rating one's ability to read nonverbal communication, and they also sometimes provide short-answer questions about how one would approach difficult situations, thus testing emotional intelligence. These tests either require a person to lie and appear to have a personality perfect for the job or tell the truth and be rejected for not possessing the desirable soft skills. If an autistic person manages to land an interview, the odds are once again not in their favor. A popular study revealed that neurotypicals feel less comfortable toward autistics based on small judgments when met face to face ( In an interview, where first impressions are paramount, this is bad news. The only way I have been able to land jobs was showing the interviewers my skills firsthand. But many autistic people don't have the luxury to show their skills, which is a real shame, because in jobs that require extreme attention to detail, many autistics actually have an advantage over neurotypical people in the natural skills they possess, lending more evidence to the theory that we are different from neurotypicals, not inferior to them. All too often, employers are only aware of the harmful misconceptions of autism, leading them to believe we aren't worth hiring because we would just be a hindrance. If they are aware of any positive traits of autism at all, it is often the "IT nerd" stereotype, which does not help those of us in other fields. I believe the hiring system needs work to better accommodate autistic people and give us more of a chance to show what we can do and how we can provide benefits to companies because of our unique styles of thinking. When companies talk about how they embrace diversity, neurodiversity is all too often left out. That needs to change. Not only will more autistic people benefit from finding gainful employment, but employers will realize that we can be a massive boon to their companies as well.

Autistics' Speaking Day: Learning about autism, learning about myself

Julian Edward Frost wrote Autistics' Speaking Day: Learning about autism, learning about myself on autismjungle for ASDay 2018

I realise this is a few days late, but such is life with a full time job.

Since I’ve started blogging, I’ve learnt a great deal about autism, and about why I am the way I am. This will be about the things I’ve learnt.

Sensory Processing Disorder

In Sensory Processing Disorder, senses are either heightened or lowered. I have heightened sensory perception. As a child, I enjoyed eating. In fact, I was mocked for being the “family dustbin” and having “hollow legs”. To me, food was always tasty. This recently became a problem. I am currently trying to lose weight, but I really like food. Despite this, I’m a few kilograms down.
I was in addition hyperactive, and burned up energy at a formidable rate. I also still enjoy having my hair played with.
The downside of heightened senses is that while pleasant sensations are more enjoyable, unpleasant sensations are considerably worse. Pain is more intense, the smell of burning rubber can turn my stomach, Malaria tablets taste utterly vile, and loud music is painful.


Misophonia literally translates as “hatred of sound”. It was proposed as a condition in which negative emotions, thoughts, and physical reactions are triggered by specific sounds. People who suffer from the condition are typically aware that they have it. I certainly know it.
Many years ago, my whole family were having egg rolls for Sunday breakfast. As we were standing around, my sister literally started slurping her egg roll. The sound so enraged me I bellowed at her “STOP SLURPING YOUR EGG ROLLS!” I then got yelled at for yelling. Deep down, I knew I was overreacting, but I was too angry to react normally.


I handle stress very badly. Worse than most people I know.
As an autistic, my social filters aren’t as well developed as a neurotypical person’s ones. As a result, I have to work hard to behave in an appropriate fashion. Stress causes my filters to fail. It is not atypical for me to start speaking very bluntly at the end of a hard day, to the amusement of my coworkers. I also behave strangely. Once, stressed out, I had nowhere to put an empty cup I’d finished drinking from, and decided to balance it on my head. Once people realised I had a cup on my head, the response was hilarity.


There is a myth that autistics lack empathy. This not only misunderstands autism, but empathy too.
There are two main types of empathy: cognitive and affective/emotional. The former involves working out what other people are thinking and feeling, the latter is about feeling what the other person is feeling. Autistics usually score below average for cognitive empathy. This has led some to postulate that autistics also have poor emotional empathy. This is completely untrue. From my own experience, I may find it hard to work out what another person is thinking, but once I work it out, I feel it intensely. From reading comments on the internet from parents of autistics, I know I’m not the only one.

There is so much I’ve learnt over the past eight and a half years. I believe there is still a lot for me to learn.

An Apology

 This is an apology to previous participants. 

To those who have submitted their work, and did not see it show up on this blog or see it included. 

There are very few reasons for why this happened, and for most of these, I apologize. I have always regretted not being able to post every entry to ASDay. 

Most of the entries that I've had to decline over the last 11 years have been professionals or parents trying to peddle their newest book or website. I don't mind sharing that each year our email gets advance copy and interview offers for the Next New Autism Treatment. I don't know about you, but I don't apologize for not approving those. 

What saddens me are those who, for whatever reason, I cannot access. And so, I cannot browse to confirm trigger and content warnings. And I cannot, in good conscious, add to the event. 

I also love seeing all the autistic posts. 

My only relief is that these instances are relatively few; most of the time posts have been scheduled and so I just need to keep checking the link. But the ones that I try every trick I know - changing accounts, switching browsers, even using a VPN (I'm not IT; I'm an English major, this is the extent of my knowledge) - and still unable to find, hurts. I feel like I've let the participant down, and worse of all, I don't know why. 

This year, I'd like to try and fix those posts. So please, join me as I explore past entries. 

~ Corina Lynn Becker 

It Is Time

 Leeanne Marshall post Autistics Speaking Day 2020: It Is Time on The thoughts of One Autistic Person tumblr

Autistics Speaking Day 2020: It Is Time

It would be so easy to discuss the worldwide pandemic for my blog post. The impact it had (and continues to have) on me despite there being few cases of Covid-19 in my local area (the few cases are all in hotel quarantine). However, I think the world needs some positive news. Besides, it is time. Time for me to reflect and provide an update on my first two Autistics Speaking Day blogposts. To be honest, I have attempted to reflect and provide updates on these posts several times on previous Autistics Speaking Days but each time I either come up with an idea that is more relevant/important or I can not seem to find the right words on the day, leading me to write about something else. Not today though, I am determined to get this positive reflection/update Autistics Speaking Day post done.

Back in 2012, I wrote my first Autistics Speaking Day post here:

In this post, I mention that in the past, I had previously stayed silent on comments that I should have confronted. I challenged myself to speak up if/when these comments were brought up in future.

In 2013, I wrote my second Autistics Speaking Day post here:

I mention in this post that I still needed to work on advocating (communicating) for myself. Another para graph I included was “I do not yet know if I can succeed in holding down a job typically for neurotypicals (a teacher). I am sure however, that whatever my career ends up being, it will be related to education in some way and will hopefully be around including Autistic individuals in general education settings.”

It is at this point that I once again start thinking about ditching this writing and starting over with another post. I am worried this comes across as bragging, however, I will persist despite my worries. I completed my teaching degree in the middle of 2014 but ultimately, I decided being a teacher was not for me. That said, my jobs, my advocacy volunteer work etc. have all been related to education and indeed, inclusion of Autistic individuals (and people with other disabilities) in mainstream school settings. For starters, I am a casual academic at a local university. I am involved in an autism topic as a guest lecturer, an assignment marker and (sometimes) a tutor. Students in this topic are usually enrolled in teaching, education or disability studies degrees. This means I am influencing current/future teachers and their attitudes towards Autistic people by my involvement in this topic. Importantly, last year I was paid to assist in writing the case studies used for one of the assignments to ensure the case studies seemed to be real, diverse and included a range of issues for Autistic people.

Since late 2018, I have been part of the Inclusive School Communities (ISC) project as both a member of the steering group and a mentor (young, disabled person) connecting with the project schools. This project is about making schools in South Australia more inclusive for students with disability. Earlier this year, I wrote a report for this project based on two focus group sessions at a South Australian high school. The report went through issues faced by students with disability at school and suggestions for what this school (and other schools) could do to work on these issues, as well as what the school was doing well. I included 9 recommendations at the end of the report for schools. If readers are interested, the report is publicly available here:

Through meeting each other in the ISC project, two other school mentors and I got involved in advocacy volunteer work. We have had discussions with a Ministerial adviser regarding what needs to be done to make schools more inclusive and to save a local high school that has been making a lot of changes to be more inclusive. I personally also spoke at a rally to save the school. I am pleased to report that the school was indeed saved, a win in 2020.

So, as you can see from the above information, I have indeed been involved in the inclusive education space (just not as a teacher). As to the other problem I had, well, I am no longer silent when I should be speaking up. In fact, I sometimes worry that I dominate meetings with the other mentors in the ISC project (though they assure me that while I speak a lot, I do not dominate). Overall, I have certainly come along way since 2012-2013. Just goes to show how much personal growth and experiences can happen in 7/8 years. I have certainly done what I challenged myself to do in 2012 and what I wanted to do in 2013. I believe my efforts will help other Autistic people (and other people with disability).

……To my readers, I think now it is time for you to do some reflection. In what ways do you make the world a better place? For your local community, for your friends/family and/or for yourselves?

#AutisticsSpeakingDay - Autistics Speaking in 2020

 Jane Strauss posts from Facebook

Content Warning for mentions of politics

#AutisticsSpeakingDay - Autistics Speaking in 2020

For years, one of my “Autistic Superpowers” has been my ability to tell when people are lying, or in some way out to screw others. Often NTs were upset by this, because I'd directly point out my observation, Almost thirty years ago my track record at this got me the “Ignore me at your peril” award from a community organization in which I had been involved for some years.

Saturday, November 2, 2019

Acceptance should not be contingent on how useful we are to the rest of the world

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

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; 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 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.