One of the ways I contributed to the blogosphere, back in the day, was to provide lists of posts on a particular subject. Nowadays, that is called "curation". Back then, it was just something that provided a service.
"Light it up blue" for "autism awareness" offends many autistics and people who center autistics in discussions of autism.
Back in 2010, autistic folk who were exasperated with being talked over and talked about started Autistics Speaking Day
In 2010, Autistics Speaking Day was started by Corina Becker and Kathryn Bjørnstad. Autistics Speaking Day countered an event that requested Facebook users to "shut down" communication to "show what it's like to be autistic." They led autistic bloggers to raise their voices and say that the best way to understand what it’s like to be autistic is to listen to autistic people. Bjornstad and Becker received ASAN's 1st Annual Award for Exceptional Services to the Autistic Community at ASAN's fifth anniversary gala event the following year.
In 2011, Paula C. Durbin-Westby became exasperated with the "Autism Awareness Day" noise, primarily from parents, and started Autism Acceptance Day, originally as a Facebook event, and later as a blog.
On April 2, 2012, Steve Silberman posted: Why “Autism Awareness” is Not Enough: Actually Autistic People and their Allies Explain “Autism Acceptance”
But by 2013, it became clear to many, including Ms. Durbin-Westby, that a day for autism acceptance simply was short-sighted Even Autism Acceptance Month didn't go far enough. And so the International Autism Acceptance Decade (2010-2020) was born.
So here we are, 7/10ths of the way through the Autism Acceptance Decade. Ms. Durbin-Westby is again celebrating Autism Acceptance Day/Month/Year/Decade with many interviews -- starting with Jean Williams. The second interview is with Penni Winter. You might want to bookmark the International Autism Acceptance Decade blog to keep up with the newly published interviews.
Sonia Boue at her blog The other side | Blogging on autism and art, published The sound of stigma: a journey across the rope bridge. #AutismAcceptance
Blogging about autism sometimes feels like being suspended above a battleground on a rope bridge. The warring factions are often parents of autistic children and autistic adults. Like many other late diagnosed autistics I know, I am both. Other parties such as charities and research bodies (those not autistic led) tend to fall into the same camp as many non- autistic parents. In general, thought on language about and priorities for autism are driven by the non- autistic majority. There is still genuine discomfort in accepting identity first language and allowing the primacy of autistic voices in on the contemporary debates about autism which (crucially) lead policy, resources and research.
Judy Endow is an autistic adult, parent to autistic children, an author, and a therapist in the field of autism. I highly recommend her work. One place to start is her blog, Judy Endow: Aspects of Autism, Translated. In Toxic Autism Awareness: Fact from Fiction?, she wrote:
Our autism awareness campaigns of recent years have indeed made everyone aware of autism, but that public awareness does not match the facts. In fact, in many regards, John Q. Public is only aware enough of autism so as to be toxic to actually autistic people. This is serious. The definition of toxic by Merriam-Webster is “containing or being poisonous material especially when capable of causing serious injury or death.”
Today it seems socially acceptable to blame the evil behaviors of criminals on autism and reprehensible behaviors of politicians on mental illness. Don’t buy into this societally acceptable behavior. To buy into it is to perpetuate it. Each time you do so you are drawing that line between us darker, deeper and wider inviting fear to take up residence, distancing yourself from autistics and/or people mental illness, making us “those people,” the ones othered. In turn we are feared. Remember, people in power can do strange things when they are afraid. Is this the kind of world you want your children to grow up in?
(Note: Ms. Endow's essay was originally published at OllieBean, another excellent site. Olliebean's mission statement:
The essayist and poet who writes at So Much Stranger, So Much Darker, So Much Madder, So Much Better has published a number of Autism Acceptance posts, such this poem (I have only inclded the first stanza, please go read the full poem):
Ollibean is a dynamic community of parents, families and advocates in the disability community working together for a more socially just, accessible and inclusive world.
We humans thrive in loving and accepting environments connected to people that believe in us.
High expectations, safe and welcoming environments, robust and accessible academics, and meaningful social opportunities are every human’s right.
A CALL FOR ACCEPTANCE
There is beauty in the ways we move
Every flapping hand and tapping leg
Every spinning, rocking, bouncing body
A symphony of stims
Producing an ethereal melody
The flowing motions of bodies always moving
Thomas, an #actuallyautistic adult who lives in the United Kingdom, writes the blog Aspiblog. He published two posts: World Autism Awareness Day and Too Much Information and Autism Acceptance (His blog also features gorgeous photographs, so do take a look around.) In the latter post, Thomas writes:
Autism Acceptance Month is a better title than the old title for this month. Some however, and I fully sympathise with their reasoning, consider that even this is inadequate, and have introduced another title, Autism Appreciation Month. This appeals greatly to me, as an extension of the principle by which the title Autism Acceptance Month was arrived at.
Eclectic Autistic is a blog written by an adult who was diagnosed with autism in the last year.The blog post on Autism Acceptance makes the case for going further.
So should we rename April to be Autism Acceptance Month? It would be an improvement, I think, and I fully support those who do so. But I also think we can go another step further, and call it Autism Appreciation Month.
Aspie Under Your Radar is written by another diagnosed-in-adulthood autistic. Here is the first of her essays on Autism Acceptance: Okay, so it’s April… let the awareness onslaught begin
It’s April! I need to take care of myself, for sure. The whole turn-on-blue-light-bulbs thing is, well, a popular thing. It means different things to different people, and to autistic people, it doesn’t always mean something good.
At work, we’re encouraged to wear blue on certain days to “show support” for autistic people and their families. Because, well, they’re all apparently young boys who make their parents feel “blue”, and we want to be supportive of the poor suffering families. Bummer. I have to figure out which days those are, because I don’t want to wear blue on those days. I’ll wear #RedInstead. But blue clothes are a significant portion of my very limited work wardrobe
So, while the world is busy getting “aware” and raising money for non- autistic run charities to try to figure out ways to cure me of being myself, I will be over here, engaging in my favourite repetitive self soothing activities, indulging in my special interests, eating my predictable restricted diet, and fixating on topics I am obsessed with. Stimming, self-caring, learning, advocating. In other words, I am going to spend April the way I spend every other month- being happily, proudly autistic and fighting for equal rights for all of us…..
…. and blue lights wont help me with any of that.
I have to confess, I’m feeling pretty raw about this particular month. Stressful time at work, minimal downtime, the comparative recentness of my own diagnosis…whatever it is, I’m finding it far less easy than I’d anticipated to be the activist I wanted to be at this time.
To me, I’m not missing any pieces. I’m not even a puzzle to be solved. To me, it’s the world that is confusing. They seem to be missing a few pieces. Like the fact that we’re whole, valid, complete human beings, just as we are. That maybe, nature knew what it was doing when it formed us. That maybe, the great mystery is why we’re here. And maybe, how we could improve the world and the quality of life for all of its inhabitants. That perhaps, we “actually belong here, having been put here for a reason. But the world is missing our voices. Or rather, it’s turning a “blind eye” to them. All while droning on about missing pieces.
In #RedInstead ~ Autism Acceptance / Appreciation Month, The Silent Wave wrote:
Someday, as I google “Red Instead”, the search returns won’t be led by links to technology companies or (seriously?) feminine napkin parodies (don’t ask; I didn’t click. Just Say No, and all that).
Someday, when we google “red instead”, links to blogs and truly-Asperger’s/autism-friendly advocacy organizations will dominate the cyber-search landscape.
It will be then that we’ve truly arrived.
I wrote the above when I first received my diagnosis of autism. Three years on, I’ve written the book I wished I’d had as a teenager – one where I might recognise myself. I wrote it for anyone who ever felt like the world didn’t quite make sense.
Learning that I was Autistic was a daunting, overwhelming thing.
On the one hand, it explained everything. Learning that I’m Autistic has been one of the best things that has ever happened to me.But, on the other hand, it’s overwhelming and discouraging to think about how allistics (non-Autistics) will likely never understand and will only rarely attempt to understand me.
This year for Autism Acceptance Day I have five wishes. Some day they may come true – then my work blogging will be complete.
At Seriously Not Boring, Jennifer Roberts Bittner shared Autism and Acceptance as Explained by an Autistic 10 year old:
My 10-year-old son decided to create a short video describing his experience as an autistic person. After all, who better to explain autism than someone who is actually autistic? The video is a simple, honest, and even funny description that is less than two minutes and was created using the program Scratch. Yes, he did all the writing, drawing, and coding by himself.
Lately I have been getting rather irritated by certain things in the “Autism” community. I put quotations around the word Autism because I am not referring to actually autistic people, I am referring to those who claim to speak for us. The doctors and researchers and groups and therapists and other so called professionals that claim to work with autistic people. The idea that they work with us is actually quite laughable, because to me it seems they are working against us in so many ways. And then there are the “autism parents” who are not autistic but use the condition -that is not their own- as their identity somehow while simultaneously yelling at us to stop calling ourselves autistic because we are not our diagnosis. They push person first language and say we are people and yet treat us like we are less than by speaking over us and ignoring/dismissing us when we do try to speak. They push person first language regardless of the fact that the majority of autistic people prefer identity first. And lest we forget, they also use the dismissal tactic of “there are more important things going on than language”. I love that one. It’s like they don’t know us at all and yet claim to be experts.
Now, I have heard, on awareness versus acceptance, that awareness is necessary for acceptance. I am indeed for awareness (as in understanding autistic behaviors roles in processing and resulting from environmental factors), but let me put it this way. Imagine you are buying a bookshelve to assemble from IKEA (I know, I'm sorry) and awareness is the screws, while acceptance is the wood. You would not keep ordering tons and tons of screws and no wood hoping it could create a full shelf. Acceptance implies awareness. We have enough awareness, but awareness is not enough.
Writing at This Outnumbered Mama, Kaylene posts 5 Shocking Reasons NOT to Light it Up Blue for Autism Day
We are just days away from Autism Awareness Month, and I should be ecstatic. I am supposed to be very excited that for one month the whole world turns its sights towards inspirational stories of inclusion and feels good because they “light it up blue” for awareness on April 2nd each year.
But can I just say, please don’t. As the mother of an autistic son, and an autistic person myself, I cannot express to you enough how frustrating it is when I see everything blue on April 2nd each year. Honestly, I do my best to stay off of social media that day, and my poor husband hears me rant at least 3 times throughout the day. Listen, I get it. It feels nice to do things that we can consider activism without really thinking about the impact, or lack of impact, that it may have. So this April, check out these 5 shocking reasons NOT to light it up blue for Autism Day.
There are two main sections of the autism community: those who are autistic and their parents, friends, and other allies. Within these groups, there are disagreements about the usage of identity-first or person-first language. The Autistic Self Advocacy Network recommends identity-first language. For example, saying someone “is autistic” instead of that they “have autism.”
The same type of debate has been continuously ongoing about Autism Speaks for several years. A commonly used phrase by autistic advocates is “nothing about us without us,” and this is at the crux of most of the boycott activity. Until recently, Autism Speaks had only ever had one autistic person on their board. DisabilityScoop reported in 2013 that this board member, John Elder Robison, resigned because of the negative language that Autism Speaks was using in their fundraising advertisements.
Back in 2016 David Niemeijer, founder & CEO of AssistiveWare posted Autism Acceptance Month: Listening to autistic voices. It's been reposted for this year (as it is still apropos)
We want to help you find out more about the world of autism from the perspective of autistic people. To celebrate autism acceptance month, we have invited some autistic people to write a blog post for us to share their experiences. We will also be sharing a number of blogs written by autistic bloggers. We hope that you will learn as much from reading these perspectives as we do.
Also last year, but (I believe) republished for 2017, autistic adult Kit Albrecht (a member of the AssistiveWare Support Team), published 5 Guidelines to keep in mind during Autism Acceptance Month
For some of us, the words, symbols and campaigns we see during this time remind us about the common myths people believe and mistakes people make when writing about autistic people. Here are five guidelines to consider.
At the Thinking Person's Guide to Autism, there is a list of ways to effectively advance autism acceptance: Autism Acceptance Day & Month: Do This, Not That
We'll be devoting our April to autism reporting and resource sharing that makes a difference, so do check back in. And thank you for supporting Autism Acceptance.
At Forbes, autism parent, scientist, and science journalist Emily Willingham wrote No Foolin': Forget About Autism Awareness And Lighting Up Blue
Conquering that step means taking autistic people as they are, learning from them, and listening to them. That takes work. It takes more than pulling something blue to wear out of your closet or buying blue lightbulbs at Home Depot and feeling better about yourself. More than dropping a quarter into a Toys R Us coffee can. More than clickphilanthropy or adding a profile ribbon. If you really care or want to make yourself genuinely care, you'll do this work. Here's why:
Shannon Rosa, whose autistic son falls into high-support-needs category, has something to say about reading parents writing about their children's autism, in On World Autism Acceptance Day: How to Find Good Writing By Parents:
Unfortunately, when it comes to WAAD writing from parents of autistic kids, too many take the demeaning route. I find this approach quixotic at best: If you write smack about your kids in public spaces, how could you ever expect other people to treat your children well?....
I'll end by imploring reasonable, supportive readers like you to call out harmful parent writing when you can, on social media or in the comments. I realize that calling out is confrontational and therefore squirm-inducing; I don't like doing it either. Especially when folks who get called out dismiss criticism outright, or angrily frame reasonable critiques as personal attacks.
But the reason for calling out is not necessarily to get that person to change their behavior (though that would be great); it is to make them accountable for the hurtful things they publicly endorse, and let their readers know that writing awful, misleading, privacy-violating things about autistic children in public is not acceptable.
The blog, Learn From Autistics Connecting Parents and Caregivers with Autistic Voices, did not have a specifically #WAAD2017 post, but it has published a wealth of acceptance, advancing, and understanding posts.
And of course, no Autism Acceptance Month would be complete without the Facebook community Tone it Down Taupe.
I would be remiss if I did not mention several books that should be part of your autism acceptance library
- Typed Words, Loud Voices, "written by a coalition of writers who type to talk and believe it is neither logical nor fair that some people should be expected to prove themselves every time they have something to say."
- Loud Hands: Autistic People, Speaking "a collection of essays written by and for Autistic people. "