Monday, March 25, 2019

Come On Cousins


The task of Autistics Speaking Day has always been to amplify autistic narratives that might not otherwise be told, in order to dispel the stigma and stereotypes surrounding autism, and to fight back against awareness campaigns that speak empty words. Given the overlap in our communities, we feel it is important to support our ADHD and other cousins. Therefore, ASDay supports this statement made to the Center for ADHD Awareness, Canada.


March 25, 2019
To the Center for ADHD Awareness, Canada (CADDAC), Heidi Bernhardt, Patrick McKenna, Tazz Norris, Rick Green, Simon Rakoff and Zoe Kessler:
Hi cousins!
It was so exciting to hear Heidi Bernhardt on CBC, talking about CADDAC’s long-term awareness campaign “to get people talking and break the silence about ADHD,” and to know that so many more neurodivergent people and their allies will be able to hear and see first-person stories that will dispel the myths and stereotypes about ADHD.
We applaud CADDAC for prioritizing the voices of ADHDers and give a standing ovation to those who have shared their stories with each other and the world!
As ADHDers and autistics, we go way back! Since 1993, the term “cousins” has been adopted to refer to people whose neurodivergent similarities unite them, regardless of diagnoses. Many in our communities see ADHD and autism as cousins; many belong to (at least) both communities and learn from each other’s unique ideas since we often overlap in our need for support around executive functions, experience of social stigma, and out-of-the-box creativity.  
We also often have a shared struggle to accept ourselves on our own terms, often in the face of misunderstanding and shame. That’s why we wanted to reach out and let you know that it is disheartening to hear that “#ADHDSpeaks” is your campaign’s hashtag.
Here’s why:
Many non-Autistic people are shocked to hear that Autism Speaks, the largest autism nonprofit in the world, is overwhelmingly condemned by autistics ourselves. We have organized for years to challenge its offensive language and support of eugenics, calling for boycotts of its sponsors, protesting its events and speaking out. We came together as autistic people, self-advocacy and allied organizations to ask you to stand with us in solidarity by changing your hashtag to #ADHDSpeaking and by doing so, making an even more powerful statement of acceptance and neurodiversity.
Here are our reasons:
Violations of the disability rights movement principle “Nothing about us without us”
Unlike other non-profit organizations (such as the Canadian Hearing Society or ARCH Disability Law Centre) which represent people with a specific disability, Autism Speaks (AS) and Autism Speaks Canada (ASC) do not allow autistic people to hold a balance of power in their governing and oversight roles. There are only two out of twenty six individuals that are autistic on their Board of Directors. We contacted ASC to inquire about autistic representation; they have (as of yet) not responded.
In his open letter of resignation from, autistic author John Elder Robison noted that “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target” (2013). He stated “we [autistic people] do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people” (Robison, 2013). Finding that his “words and efforts have had no real impact on the beliefs of the actual leadership of the organization,” he resigned in 2013.  
Misleading use of funds towards eugenicist goals
AS’ fundraising efforts are targeted towards finding a “cure” and creating a world in which autistic people no longer exist: in the US, their 2010 fiscal budget provided over $16 million in research grants to “cure” autism, while only $50,000 went toward family and community supports. (Ne’eman, 2009; Brown, 2012.)
As AS’ own 990 Non-Profit Tax Exemption Form (2016) shows, as little as 3-4% of AS’ funding is allocated to services that directly support Autistic people” According to Charity Intelligence Canada, ASC reported that it granted $1.3m in research funding, 56% of its total program costs (2017). According to ASC’s 2017 financial statements, only 4.4% of its restricted funds were spent on “family services” and 51% of ASC’s budget is consumed by overhead costs, which is outside Charity Intelligence’s “reasonable range for overhead spending” (2018).
ASC also gave $1.1m to MSSNG, the world’s largest whole genome autism study. As the International Bioethics Commission (UNESCO) reported in 2015, this raises serious ethical questions. Since prenatal testing of Downs Syndrome became available, 90% of babies with Downs Syndrome are now aborted (www.dontscreenusout.org). If the research that ASC funds is successful, we won’t even be born.
Indifference to the serious issues that affect autistic people
Despite the wealth their fundraising generates, AS and ASC’s priorities do not address the serious issues we face, both systemic: “segregated education, restraint and seclusion, aversive punishments, inequity or inaccessibility in healthcare, sheltered workshops and institutionalization” (Brown, 2012) and the attitudes and stigma which normalize abuse and violence against us, publicly and in our personal lives.
AS’ “Light it up Blue” campaign promotes an inaccurate and harmful stereotype that ‘more boys than girls’ are autistic, making it harder for autistic girls and women to identify with and be diagnosed as autistic. This outdated notion also creates barriers for the many autistic peoples who are transgender, non-binary and gender non-conforming. To counter this, autistic and neurodivergent communities initiated #RedInstead, #ToneItDownTaupe and “Autism Acceptance” campaigns during the month of April to speak out against AS’ misinformation, and affirm that we are deserving of acceptance.
Dehumanizing language and condoning of violence against autistic peoples
AS routinely uses language which describes autism as an “epidemic”, “tragedy” and a “national health crisis”. The organization’s fundraising campaigns have drawn horrified criticism from autistic people, allies and self-advocacy organizations.
AS’ “I Am Autism” campaign says (in part) “I am autism … I will make sure that your marriage fails … I will bankrupt you for my own self-gain … I have no interest in right or wrong … I derive great pleasure out of your loneliness … I will fight to take away your hope … I will make sure that every day you wake up you will cry … you [parents of autistic children] are scared and you should be” (Autism Speaks, 2009)
We do not support this portrayal of something which is integral to our lives and selves and which fuels violence and stigma against us. Autistics, particularly autistics of colour, face systemic violence, hatred, police brutality, abuse and increased rates of filicide (murder by a parent). This rhetoric has been shown to lead to violence against autistic people. An organization that supports us would not use such hostile language to describe us.   
In 2013, Autism Speaks promoted the Judge Rotenberg Center (JRC) as a featured service provider at their Washington, DC “Walk Now for Autism”. The JRC has been condemned by two UN Special Rapporteurs On Torture, for being the only facility in the United States to use electric shock as punishment on disabled people. At least six students with disabled have died while at the JRC (Brown, 2013)
In 2017, ASC was found to have accepted the support of a neo-Nazi group, the “Soldiers of Odin”, a white supremacist hate group who organized an officially registered Autism Speaks Walk in southwestern Ontario. It was only after five days of social media pressure from the autistic community that ASC finally took down their page. No public response, apology or denouncement ever came from ASC regarding this, nor did they ever clarify their position on partnering with white supremacist groups.
Why #ADHDSpeaking?
The #AutisticsSpeaking hashtag came into use when two autistic people, Corina Becker and Kathryn Bjornstad, created Autistics Speaking Day. Many autistic people use it (like the hashtag #ActuallyAutistic) to highlight when we are speaking for ourselves, about our own experiences.
We want to ask you to celebrate acceptance over awareness this April and make an informed, collaborative choice to change CADDAC’s hashtag to #ADHDSpeaking. It’s a small change, with big possibilities that go beyond optics or simply picking sides.
Let’s use this as an opportunity to start an inter-disability dialogue in the spirit of collaborative advocacy. Autistics and ADHDers, particularly adults, both face down shame and stigma, we often find diagnoses confirming and even life-changing, we are incredibly misunderstood, even by those who love and support us, and we need far more (and diverse) support across our lifespans than we are currently receiving.
We have much to learn from each others’ local, territorial and national movements. Autistic people have been speaking, organizing and publicly daring to be proud of who we are, for decades, across borders, across communities, with almost no financial resources, and facing a charity juggernaut backed up by some of the world’s wealthiest corporations. We are building intersectional, grassroots voices that are amplifying the real experiences of a uniquely diverse group of people whose presumed ‘silence’ has been used by those who, claiming to speak for us, speak against us.
Let’s do this, cousins! Let’s start speaking, together.

Signed by:
Autistics for Autistics (A4A) Ontario
Autistics United Canada
London Autistics Standing Together (LAST)
If you’d like to sign onto the petition inviting CADDAC to change its campaign name to #ADHDSpeaking, click here:http://chng.it/Fj5Pvst5kv
Bibliography
Autism Speaks Canada. [Financial Statements 2017] Retrieved from            
Autism Speaks Canada. Dollars at Work. (2019). Retrieved from           
Autism Speaks Canada. Leadership. (2019). Retrieved from           
Autism Speaks. (2017). [Return of Organization Exempt from Income Tax]. Retrieved from https://www.autismspeaks.org/sites/default/files/2017-form- 990.pdf
Autistics 4 Autistics Ontario. (2018, June 19). Counter-Leafletting Autism Speaks Canada: Experience and Lessons from the Field. Retrieved from           https://a4aontario.com/2018/06/19/counter-protesting-autism-peaks-       canada-experience-and-lessons-from-the-field/
Autistic Self Advocacy Network. (March 2018). Before you donate to Autism Speaks, consider the facts. Retrieved from https://autisticadvocacy.org/wp- content/uploads/2018/03/AutismSpeaksFlyer_color_2018.pdf 
Autistics United Canada. (2019). Retrieved from https://www.autisticsunitedca.org
Berrington, Lucy. (2013, November 14). A Reporter’s Guide to the Autism Speaks Debacle. Retrieved from https://www.psychologytoday.com/ca/blog/aspergers-          alive/201311/reporters-guide-the-autism-speaks-debacle
Center for ADHD Awareness, Canada. (2018, October 2) Retrieved from           
https://caddac.ca/adhd/wp-content/uploads/2018/10/CADDAC-press-          releaseFINAL.pdf [Media release]
Don’t Screen Us Out. (n.d.) Retrieved from www.dontscreenusout.org [Campaign    Briefing]
Houlberg, Derek. Charity Intelligence Canada. (2018, July 17). Autism Speaks.     Retrieved from https://www.charityintelligence.ca/charity-details/474- autism-speaks-canada
London Autistics Standing Together. (2017, May 25). An Open Letter To The        Sponsors Of The Autism Speaks Canada 2017 Walk. Retrieved from           
Moran, Paddy-Joe.(2016, April 2). Light it up Blue — but for who? Retrieved fromhttps://askpergers.wordpress.com/2016/04/02/light-it-up-blue-but-for-who/
Muzikar, Debra. (2015, April 30). Autistic People, Parents And Advocates Speak   About Autism Speaks. Retrieved from https://the-art-of-autism.com/autistic- people-parents-and-advocates-speak-about-autism-speaks/
Muzikar, Debra. (2015, December 9). Stephen Shore Talks About His Appointment To The Autism Speaks Board Of Directors. Retrieved from https://the-art-of- autism.com/stephen-shore-talks-about-his-appointment-to-the-autism- speaks-board-of-directors/
Robison, John Elder. (2013, November 13). I Resign My Roles at Autism Speaks. Retrieved fromhttp://jerobison.blogspot.com/2013/11/i-resign-my-roles-at- autism-speaks.html
Schultz, Kirsten. (2017, March 9). A Roundup of Posts Against Autism Speaks. Retrieved from: https://medium.com/@KirstenSchultz/a-roundup-of-posts- against-autism-speaks-5dbf7f8cfcc6
United Nations Educational, Scientific and Cultural Organization. International Bioethics Committee. Report of the IBC on Updating Its Reflection on the       Human Genome and Human Rights, SHS/YES/IBC-22/15/2 REV.2 (2 October 2015), available from the UNESCO Digital Library https://unesdoc.unesco.org/ark:/48223/pf0000233258.




Friday, November 2, 2018

They Were Wrong

They Were Wrong
By Tagm

I want to let you in on something that took me a while to learn. And just like any advice from some random individual in the world, it might might not apply to you in particular. But I hope it does. People tell you a lot about autistic individuals, I find. There's a lot of overlap in the mainstays, so to speak - you know. Autistic people have trouble in social situations. They don't get when people are frustrated or unhappy or some such. They don't get metaphors and sayings. They need to stim all the time. You've likely heard others, but they're the ones that come off the top of my head. And I want to tell you what I figured out, after a while of experimenting: They were lying. Well, lying may be the wrong word. It implies deliberate action, doesn't it? Like they (the nebulous 'they') were purposefully trying to hold you down. I don't think that's what happens, for the most part. Certainly some people would prefer the Autistic and Asperger's individuals to keep quiet and fade into the night, but I think a great majority genuinely think that above stuff is true. And they were wrong. Not to say that it doesn't have a grain of truth - if you're autistic, then it WILL be harder to deal with social situations. And you may find it harder to catch those subtle social cues people do, and you may find yourself questioning those sayings that everyone else uses without a second thought. And if you're like me, you will pack a device of some kind to fidget with to clear your nerves on occasion. But note: It's -harder-. Not impossible. You're starting anything from five to five hundred thousand steps back from everyone else, and trust me, if you feel like having to work hard just to get to the same level as everyone else is a bad deal, I totally agree. The silver lining is: It's a damn better deal then the one where you just can't do it. And I know: Some people actually do have that deal. That deal where they just -can't- do the thing. Like I said at the start, this random advice might not apply to you, and if that's the reason why, then... well, there's not much I can think of to say, frankly speaking. I don't know how to handle that situation. Not right now, anyway. Still others may think I'm being over-positive about it. Frankly, for their particular situation, maybe I am. Again, if that's the case for you, I don't really have much to offer as a platitude, as one random person online typing about something so international and broad. If I've offended anyone with what I said, please take my word that it was never my intention. Ultimately it's just less-then-random babbling from someone on the spectrum who feels this stuff applies to themselves. But if you feel that the things I've said apply to you - as I feel they apply to me, and I feel astoundingly lucky to be able to say that - then take what I said and run with it. Work hard to do whatever it is you think your autism gets in the way of, whatever that may be. I'm not gonna lie and say it'll be easy. Trust me, it'll feel like a slog some days, it'll feel like banging your head against a brick wall others, and still other days you'll feel like it's not worth the effort. But it will be -possible.- Hard, but doable. So if they say you can't do it, well... They are wrong.

Dry Eyes Album

Fiona, Dry Eyes

Content Warning: Punk/grunge music; not all songs have been reviewed for specific content warnings


Fiona writes:



This is my band from when I was in high school. I'm autistic and my bandmates had disorders as well. It was extremely fun and a great way to be a part of my local community and meet new people without feeling out of control or out of place.

Where was heaven?

Where was heaven?
by Seven C.

"Can I wash it off my skin with water- how they look at me as if I were see-through. Can I be anybodies child?" Wrote that after a long day of work, overwhelmed and overheated. Unsure of how I could even imagine doing it all over again. If anything, I wish I could understand how hard it was to accept me for who I am. Even in good graces, the whole of me was too much. In my own pursuit of happiness, I hope that everyone finds theirs. I look up and around and wonder if there's any place that I rather be. For all the good times that I had in this spot, I'm not sure if I ever found the happiness that they were searching for me. Happiness that I wanted them to have. I wondered where was heaven.

Autism 101

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

Autism 101

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

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


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

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

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

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

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

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

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

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

Thursday, November 1, 2018

I'm so fucking tired

 Content Warning for swearing

I'm so fucking tired
by Seven C.


Den

Den
by Seven C.


“I can let it all pass me by Or I can get down and try Work it all out this lifetime…” That’s one of my favorite songs, reminds me, very well, that everything could pass me by. But what is everything, though? I live a great life, what else is there? That question haunts me with fear. That question haunts me because I don’t know. All I know is this, all that there is is this, this is life. But what about over there. Why are they laughing at me? Why or how am I so different from them or them from me? We want the same things. Love is angry, and she is beautiful in a way that makes me understand what beautiful is. But I don’t know what she is. My words stiffen and circumvent in the air about her. Maybe I will never know her, maybe I shouldn’t. Is she everything that could pass me by or just a representation of it? I learned from my favorite teachers: cartoon characters on my favorite networks, that love isn’t an esoteric thing. In the same way that I discovered that Courage the Cowardly isn’t actually cowardly, I learned to appreciate how hard I try and how hard I fail. Courage, after all, isn’t the absence of fear but the strength to overcome it. Yes, I’m scared all the time. I fear the cold unknown future and present unbecoming truth: Love doesn’t know me by name, but not because of my Autism. Autism is a part of me, and so is this angry emotion. I give in to both with great acquiescence, for it’s all that I can do. I’m angry, mad as hell, because I can’t lay dormant. I can’t hide. I can’t wait. Life can’t pass me by. She, well she may as well pass me by, but she won’t leave me far behind; my autism, my anger, my love. I’m angry with the lack of reciprocation and the solipsistic nature that I drown in but not with my autism, and certainly not with what she is. I don’t have any anger to share, just love. Everything to fear but everything to gain. I won’t let life pass me by, new life, just as strange and juxtapose to mine. And I won’t let anger tear me down, replace the patience and acceptance I’ve been refused. Everything could pass me by, but before my life, I’m fighting.

#AutisticsSpeakingDay2018 Post: A Call to Intertwine Race into the Autistic Community

Timotheus "T.J." Gordon, Jr., #AutisticsSpeakingDay2018 Post: A Call to Intertwine Race into the Autistic Community on The Black Autist


#AutisticsSpeakingDay2018 Post: A Call to Intertwine Race into the Autistic Community

Happy Autistic Speaking Day everyone! 

If we ever going to have an inclusive and vibrant autistic culture, then we must accept and recognize the diversity within the global autistic community. Autistic everywhere must understand that only the autistic experience varies from person to person. The autistic people themselves don’t all fit the mold of Sheldon Cooper or Raymond Babbitt; they have diverse backgrounds. 
Yes, there are people of color in the autistic union! Admit it. Accept it. Embrace it even. Our community can’t no longer ignore autistic people of color just because they look different or may not share STEM interests. 

I’m seeing more autistic people of color share their stories and paint a portrait of a spectrum of experiences within the autistic community. I appreciate them redefining to mainstream folks how autism manifests in daily life; they are chiseling away the single narrative of what it’s like to be autistic by adding intersecting/interlocking identities into the narratives. Personally, it’s been a privileged working with my autistic people of color in promoting autistic acceptance in communities of color and expanding narratives of autistic people beyond the typical ones from white autistics. 

Yet, there are still some autistic people in social media who are expressing the call to end slipping intersectionality into autistic culture. From what I got from social media responses, some may not understand or want to recognize how race and autism are tied together, or why people bring up race and autism in the first place. Perhaps they might want an autistic community where every autistic are bound to a specific set to cultural norms and expectations, including subjects that are highly interesting to them (stereo-typically, it’s STEM fields or recalling facts). 

In fact, there have been people expressing desires for the autistic community to be defined as a race of people or an ethnic minority; they use those terms to describe how we have been marginalized by an ableist, capitalist society. They also illustrated how autistic people are bound by shared characteristics and interests, such as stimming and special interests related to geekery. 
I concede that autistic people are marginalized people based on discrimination and harassment we face at home, school, institutions, workplace, and leisure spaces. We are marginalized based on limited access to explore healthy sexualities, viable job and career options of our own choosing, autistic-friendly housing, starting families, and overall health care. 
However, autistic people are not a race or ethnic minority. In order to be an ethnic group or race, the people must share similar customs and beliefs, geographical areas, and have similar physical traits. 

For those who want autistic to be a race or ethnic minority…most of the people who are wishing for it have been identified as white. So if I translate this correctly, their perfect autistic community consists of white autistic people. But, I thought autism doesn’t discriminate based on race and ethnicity, religion, sex, gender, sexual orientation, etc. If you want an united autistic people community, then recognize that people of color, like myself, can also be autistic; enough with the erasure of autistic people of color in the mainstream autistic community. 

Also, we are all over the world’ we don’t originate in one particular place or “motherland”. 

Last, a race or an ethnicity is defined by similarities in belief systems, culture, food, clothing, etc. Just as the physical representation of autistic people is diverse, the cultural aspect of the autistic community is vast and variable as well. From what I’ve seen and what I’ve read in social media, the autistic culture within our community is formulated through what supporters of the autistic race think what the autistic community should be. And it’s often the white cis-male perspective of the autistic community that is promoted more regularly. The STEM interests, the trains, the D&D. Which I do like, don’t get me wrong. But there are autistic people (especially some autistic people of color) who have special interests and intense fandom beyond the conventional geek world. Some may be more into sports, dance, fashion, cooking, kinky stuff, etc. 

In short, if we, autistic people, continue to uphold a narrow view of what the autistic experience look like and not allow for inclusion and diversity in the autistic community, then the autistic community will continue to be labeled “too white” (and I dare to even say “too cis-male and scientific”). For starters, it would be lovely if we include more discussions of race and autism into our community and encourage more autistic people of color to build their own safe spaces and/or be welcomed into mainstream autistic community. Autistic folks, myself included, must expand beyond the Sheldon Cooper or Temple Grandin stereotype. 

Body Language

Anita M. King, Body Language

Body Language I shake my hands like casting Drops of water from my fingertips, Flinging outward so quickly That my skin snaps against the air. When there is too much touch, The touch of wind created by My own hand soothes me. The words that leave my tongue hobbled Sing free in the patterned flicker of fingers, The hum of the same four measures, The gaze turned away from faces And towards the sky. I have never been as quiet as they tell me. I have been loud with silence, loud With the rocking of my shoulders and the tilt Of my chin, the pressing of my palms to my eyes To make stars behind my eyelids, A dream of larger spaces.

Brain fog autistic speaking spray 2018

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

Brain fog autistic speaking spray 2018

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

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

Nine Years On from AS Day #1

Jane, Nine Years On from AS Day #1

Nine Years On from AS Day #1

Autistics Speaking Day again. Another Year. What, if anything has changed? What is new, what's the direction, is there one? I'm getting older. My neurology is coming to the fore. Deficits become more obvious and impact on my daily function, yet I am unwilling to deal with the disrespect endemic to the “helping” professions and social services, and they are unwilling to acknowledge my need for help in any event. I continue to have family responsibilities of which most of the young folks have no clue. I continue to try to give a child (who is not easy to deal with and does NOT respond well to lack of structure or unschooling – never has) the skills he will need to maintain decision making in a hostile world. It takes more of my spoons to barely function than I ever have. I have largely decided to leave the “autistic activist” community for a number of reasons: * Lack of understanding of parents whose children require direction and can be – yes, I will use that word – difficult to parent. * Outright libel from some members of the "community" who have never even met me. * Increasing lack of energy to function outside the house * Increasing responsibility in the family, as the one whose autistic superpower is paperwork and the only one who can get the bills paid for my partner's lifelong dream * Not even fitting in that community any more, as increasing emphasis is put on factors apart from autistic traits which I don't share. * Hostility towards Israel, our family's only port in a storm if the US Administration continues on its current course Goodbye. It's been real, but this is not the Utopia I thought it was; I have burned out and I no longer have the energy to deal with that.

Autistics Speaking Day 2018

Fallon Mydske from neurodiversitylibrary.org, Autistics Speaking Day 2018


Autistics Speaking Day 2018
(speech for 9th grade English)


Autistic culture is important to help me be proud of who I am and to deal with ableism around me. Autistic culture is created by autistic people and for autistic people. It is the things autistic people create including art, writing, speeches, jokes, stories and more. It includes the way autistic people move, communicate and connect with the world. This information is available on ASAN’s website (Autistic Self Advocacy Network autisticadvocacy.org) The infinity symbol is a symbol of autism acceptance and autistic culture. This is a symbol chosen by autistic people. A lot of people think that the puzzle piece is a symbol of autistic culture but that is not a symbol that was chosen by us. Many autistic people don’t like the puzzle piece because it indicates something missing. Other than the infinity symbol, there are other symbols of autistic culture that were created by us. This includes the neurodivergent narwhals and Montana the autistic party giraffe. The narwhals were created by an autistic person to help people understand autism. Montana was created as a response to someone saying harmful things about autism. They were not autistic and they said “What, I can’t write about a giraffe or lampshade because I’m not one of those either?”. Autistic people started getting outraged and turned it into a symbol that was silly. Humor is important to a lot of autistic people! Projects and writing such as Autistic Speaking Day and The Loud Hands Project were created to make better resources about autism. Some things such as communication cards, flapping instead of clapping, celebrating the ways we stim and the use of AAC (alternative and augmentative communication) are things everyone can use or do but are important to autistic culture. Autistic culture might not be mainstream but the ideas and practice are important to help us find a sense of community and be proud of who we are.

Amplifying Autistics

Nightengale, Amplifying Autistics on Dreamwidth

Amplifying Autistics

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

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

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

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

Read More Here 

Autistics Speaking Day 2018

Leeanne Marshall, Autistics Speaking Day 2018 on oneautisticperson Tumblr.

Autistics Speaking Day 2018

It is currently the 1st November, 2018 meaning it is once again Autistics Speaking Day and time for my yearly blog post. Last week, I thought I would not get around to writing anything. I was out of energy and strangely, feeling disconnected. A week later after plenty of thinking (mainly while having long, relaxing baths), I am feeling okay enough to attempt to write something. This post is not a challenge to anyone (as some of my other autistics speaking day posts have been). It is a post for me to look back on next year should I feel the need to. Hopefully others will find it valuable as well.
Transitions. Transitions can be hard for autistic people and I am no exception. When I left secondary school and started university, I went from a small secondary school to a much larger place. I remember thinking I was going to faint in some of the lecture theatres, hiding under random staircases around university to get away from people and telling my disability advisor I would not do my study part-time because I hated university and wanted to leave as soon as possible. I was convinced I did not belong at university and would always hate it. That first meeting with my disability advisor was awkward in other ways to. She asked me what I thought I needed on my disability access plan and I responded that I did not know. I relied on the disability advisor at university to tell me what I would likely need, though I did say no to several suggestions.
I finished my first university degree and started a second one. For the career I had planned on, this was necessary. Despite my second degree taking place at the same university, I again hated the first few months and felt I did not belong. I completed the second degree but realised I needed a new career pathway. I ended up going into a third degree in disability studies, again at the same university. Once again the first few months of the degree was hard (though this time it was made easier by me frequently talking to my lecturers from previous degrees). I also started a casual job for the first time during this degree which caused anxiety. One of lecturers offered to let me go home from class due to how pale I looked. Ultimately though, I am finding the degree valuable (the only part of university I really dislike is writing assessments, research is fine) and I enjoyed the casual job. Once I got through the first few months of major transitions, I was fine.
What does this tell me? Above all, since my university study is taking a different direction next year and because I am soon taking up more casual work, this post is to remind myself that although I will likely struggle with the changes in the beginning, I will most likely be okay. This is also a reminder that focus on transition for autistic people is important and therefore my study direction is important.
…..also, Intellectual property and recognition of work are terms that have repeatedly come up in my life this year. As such, I think it is time I put my real name to my blog entries. This post and all previous posts on this blog have been written by Leeanne Marshall aka oneautisticperson (of many autistic people).

The Joys of Autistic Life

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

The Joys of Autistic Life

Let’s say there’s a dial control that determines how intensely each person experiences the world at any given time. Think of a pain scale at a doctor’s office, or maybe a knob on a car radio.  If most neurotypical or allistic (non-autistic) people’s dials can turn from one to ten, then mine goes beyond ten- mine can turn to eleven or thirteen or maybe even fifteen.  My dial and the ability for it to point past ten is a very integral part of what it’s like for me to live my life on the autism spectrum.  It means that I have the tendency to feel things very intensely: both the good and not-so-good.  This dial affects each facet of my life.  It affects my physical senses, like hearing and taste.  My ability to empathize with others.  All of my emotional states.  Everything about my perceptions and my responses to everyday life can turn past the number ten.
It’s certainly not always easy being autistic. Whether it’s coping with sensory overload, emotional burnout, or feeling like an outsider in a world that’s not built for people like me in mind, I have plenty of not-so-great days.  But being a human isn’t always easy either, and to me, being autistic is as simple and as complex as this: it’s a way of being human. I decided to write this essay about the joys of being autistic after I recently came across the twitter hashtag #AutisticJoy, in which autistic people tweet about things they love about their lives on the spectrum.  We all have good days, bad days, and days in between.  We also all have activities or objects or people that bring us comfort and joy.  In today’s post, I’m going to tell you about a few of my favorite things that make the bad days better and the good days the best as an autistic person.  These are my joys of being autistic, which for me, are also the joys of simply being.
  1. Stimming
Stimming (or self-stimulatory behavior) is something many autistic people do to regulate and express ourselves.  It can be a way to try and turn the dial back down to a more manageable number if we want, or a way to communicate an internal state.  Classic examples of stimming include repetitive motions like flapping one’s hands or rocking back and forth, but each autistic person stims differently.  When I get suddenly excited or happy about something, I often jump up and down and flap my hands in a wild frenzy, which is an action I and other autistic people call “happy flapping.”  This is as natural and as instinctive to me as the urge to laugh at something that’s funny, and I love doing it.  Some say that laughter is the best medicine, but I say it’s happy flapping.
  1. Special interests
Sure, everyone has hobbies and passions.  But an autistic person’s special interest is next-level.  The common stereotype is an extreme love of trains, and I will admit that even I went through a train phase for a while as a young teenager.  But special interests can be anything.  They can be specific animals, plants, or places.  They can be activities, like different sports or types of games:  Baseball. Ultimate frisbee.  Scrabble.  They can be TV shows.  Movies. Academic subjects.  Video games.  Special interests can be can even be objects!  Computers.  Lampposts. Skateboards.  Icebergs…I think you get the idea.  You name it, it’s probably somebody’s special interest.  Special interests provide a kind of security, a safe haven in this loud, unfriendly, allistic world.  At the end of a long day around people who I feel like don’t understand me, I’ll always have my special interests to come home to.
  1. The online autistic community
Autistic people are everywhere.  We attend your schools.  Work in your favorite coffee shops.  We might be in front of you in line Post Office. We are your neighbors, your friends, your family.  You might recognize that we’re autistic, or you might not…but we’re here regardless.  Due to my tendency to engage in social masking, most people I interact with likely have little to no idea that I’m on the spectrum unless I choose to disclose to them. It’s tiring, to say the least. But there’s one communal space that doesn’t pressure me to conform to neurotypical standards of behavior: online. For myself, it started with YouTube when I was about thirteen.  Typing the words “Asperger’s Syndrome” into the search bar was like opening a door to an entirely different universe.  I was met with page after page of search results, a never-ending list of videos by people vlogging about their lives on the spectrum.  Thirteen-year-old me had discovered the autistic community, and it was all at my fingertips.
Today, I’m a part of about two dozen or so Facebook groups, Twitter chats, and special hashtags created to unite autistic people on the web.  The online autistic community, (the autistic self-advocacy and disability rights community in particular) has truly transformed my thinking around what it means to be a part of a marginalized group.  We post jokes and memes about autistic life, strategies for managing tough situations, realizations about living in our society as neurodiverse individuals, etc.  And most importantly, there is support.  Just a click away, there are people I know I can connect with because they experience struggles and triumphs through the lens of the autism spectrum, just like I do.
Whether I’m happy-flapping, doing research about my latest special interest, or participating in an online discussion with like-minded folks, there are some pretty great things about being autistic.  (And I’ve only listed three!)  Being reminded of the positive things helps the bad days ache a little less.  Sure, there are plenty of not-so-great things about living as a person on the spectrum. Most of the items on that list, however, are not necessarily because of autism itself.  Autistic people are navigating our way through a society that has a long way to go, especially when it comes to accessibility for and acceptance of those whose bodies and /or brains operate in ways that deviate from the current norm…But that’s a post for another day.
There is a common narrative in our society which tells us, in subtle and explicit ways, that disability is inherently tragic, that difference is wrong, and that autism is some kind of ailment that is to be prevented and cured.  In my opinion and lived experience, that couldn’t be further from the truth.  I think that in discussing and amplifying the wonderful parts of autistic life, we can all chip away at that toxic narrative, and hopefully build a better one that finally has the best interests of autistic people everywhere at heart.

The Country of Autistic People

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

The Country of Autistic People

Imagine for a moment

A country for just autistic people,

NT and allistics citizens through marriage or birthright,

But still a place all to ourselves.

 

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

No stimming repression or forced eye contact.

Imagine no alarms or bells that hurt our ears,

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

 

Imagine less than ten percent autistic unemployment,

No one forcing you to wear the tags on clothing,

Your food sensitivities are respected everywhere you go,

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

 

Imagine that “special interests” were not suppressed,

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

Domestic violence is not a disproportional issue,

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

 

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

No college professors spreading lies and disinformation about autistics,

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

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

 

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

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

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

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

 

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

Sovereign building like the White House or Buckingham Palace,

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

Bridges, theaters, architectural monuments.

 

Ok, not really a possibility.

Not a place where nothing ever goes wrong.

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

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

 

Maybe it is not a really possibility,

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

If only in your mind.