Wednesday, March 30, 2016

Community of Acceptance- Autism Acceptance Day 2016

I originally posted this as a note on Facebook.

Dear friends, family, followers, Facebook friends and everyone!
The 6th annual Autism Acceptance Day and Month starts April 2, 2016! This initiative was started by in 2011 as a corrective to the cure-oriented and often negative portrayals of autism during the month of April. The 6th annual Facebook event (Facebook is where it all started!) is here

https://www.facebook.com/events/1693850024204283/

Earlier in the month it was here (below), but due to FB  time limits on events, another one was started for the second half of the month. 
https://www.facebook.com/events/215637048774719/
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For some of the historical background, please visit http://autismacceptanceday.blogspot.com/p/facebook-events-and-historical.html. One of the earliest writings that helped promote our neurodiversity-friendly approach was written by Steve Silberman in 2012, the second year of Autism Acceptance Day/Month. http://blogs.plos.org/neurotribes/2012/04/02/autism-awareness-is-not-enough-heres-how-to-change-the-world/

 
 
The image above was created by Landon Bryce, and says “International Autism Acceptance Decade: Moving Beyond Awareness, 2010 to 2020.”

It seemed like such a long time when we came up with that logo several years ago! This designated “International Decade” is half over, and the collective efforts of many Autistics, friends, family members and supporters of acceptance for Autistics and people with disabilities has made not only a dent, but a growing impact on the conversations about autism that take place in April and throughout the year. It is no longer appropriate to use rhetoric about “devastating disorder” and images of deficit as the primary attitude toward autism. This community of acceptance has had a lasting, not temporary effect. 
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Now, many other Autism Acceptance events and initiatives are taking place, including “Light It Up Gold,” “Walk in Red,” “Tone It Down Taupe” (colorful responses to the not-so-ubiquitous blue puzzle piece frenzy), ASAN’s http://www.autismacceptancemonth.com/
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and many others, some of which are listed below. All of these campaigns and events are pro-neurodiversity, pro-acceptance of Autistics. While other groups and organizations promote a hazy-at-best and hate-filled-at-worst sort of “awareness,” Autism Acceptance Day and Month initiatives are clear on one thing: we must be accepted and appreciated for who we are, not what we “could be,” not what we are “despite” our autism, not as a “damaged” subset of human beings.


Please consider joining one of these events instead of "lighting it up blue." The "awareness" campaigns, even when appropriating the language of acceptance, which they started doing almost immediately with no crediting of Autistics for creating this movement, are still focused on "specialness," "autism is not a disability" (? of course autism is a disability!) and cures.

#WalkInRed 2016
Tone It Down Taupe during April (an especially brilliant way of criticizing the over-the-top focus of "awareness" campaigns!)
Let's chat about Autism Acceptance in Jewish Education #matanchat
Post cats during April instead.
Autism Acceptance Month Poetry Event

And a shout-out to Apple for going with Autism Acceptance instead of more "autism awareness." Apple links to a video of an Autistic young man named Dillan, who uses an iPad for language-based communication.

http://www.apple.com/autism-acceptance/
Emily Willingham writes about Apple here: Apple Goes Beyond Autism Awareness, Promotes Acceptance
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Screen capture of a post by Steve Silberman, who wrote the best-selling book Neurotribes, responding to award-winning author and Forbes blogger Emily Willingham's article "Apple Goes Beyond Autism Awareness, Promotes Acceptance." There's a lot of text. The image is from Facebook so there is the profile picture from Steve and from Emily, a photo of the big Apple logo on the side of a building and people standing below that, many of them texting on their iPhones. The Facebook sharing thing, "Steve Silberman shared Emily Willingham's post" and then his comments: "Congratulations to Paula C. Durbin-Westby, whose idea of going beyond "Autism Awareness" to "Autism Acceptance" certainly influenced my keynote speech at the United Nations (the transcript will be up soon) and seems to have inspired Apple, too. Yay!" Below that is Emily Willingham's original post: "Apple goes with #AutismAcceptance over "awareness" with a pair of videos and a complex message from an autistic teen h/t Shannon Des Roches Rosa Paula C. Durbin-Westby." Then the image, and below that the title and link to Emily's post on Forbes.com: "Apple Goes Beyond Autism Awareness, Promotes Acceptance." and part of the text from the article, which begins "Without a world willing to step from awareness to acceptance, having autism will be like being in hell for a lot of autistic people."
  
My favorite thing I have ever written about Autism Acceptance, for Autism Acceptance Day 2012. If you are new to this site, you can view it here: http://autismacceptanceday.blogspot.com/2012/03/to-my-beloved-autistic-community-on.html This essay can also be found in the *Loud Hands, Autistic People Speaking,* and also in *And Straight on Till Morning* (both available on Amazon). Speaking of publications, http://autpress.com/ is owned by disabled people.

Happy Autism Acceptance Day and Month!


 


Friday, March 18, 2016

Autism Acceptance Day 2016

This is the SIXTH year of Autism Acceptance Day and Month!!!! It seems like just yesterday when I had the idea for this. Since then, Autism Acceptance Day and Month have taken off. The projects, events, artworks, poetry readings, and other initiatives are making a dream come true for me- events in April that give Autistics and their family members and friends a significant focus on our lives as Autistics that is healthy, positive, and life-affirming. I won;t even mention the "alternative." It is my wish that Autism Acceptance Day provide a refuge from negativity, and a space where we can can be affirmed and empowered (as problematic as that word can be, I am not coming up with another right now).

This year's Facebook event, which brings together many people both Autistic and non-Autistic, and important links to events and happenings, is here:

https://www.facebook.com/events/215637048774719/

I will post links here on the original, if clunky, but totally historic (!), Autism Acceptance Day blog. I would like to collect all links to 2016 articles, videos, sites, etc., and simply link them on the blog. If anyone wants to help, let me know (comment here or send a PM on Facebook). I am dealing with a lot of stuff this April, and do not have a ton of time to do this. SO GLAD many other people are now involved in Autism Acceptance Day/Month initiatives! If you do not see your event, site, blog, or other Autism Acceptance Day/Month project here, let me know and I will link it.

Links for 2016 starting here, and I will add to them as I get them and have time: 

EVENTS, online and off:

Walk in Red 2016 https://www.facebook.com/events/474400102761154/ 
Autism Acceptance Month poetry event
Ed Wiley Autism Acceptance Lending Library
Autism Acceptance Walk (5th annual in 2016)

Websites and blogs:

http://autismacceptanceday.blogspot.com/

http://www.autismacceptancemonth.com/
https://autloveaccept.wordpress.com/2016/03/03/autism-acceptance-month-events-2/ 
http://m.wikihow.com/Support-an-Autistic-Person-During-Autism-Awareness-Month

Historical stuff on AAD can be found on the "Facebook events and historical information" page on this blog.

I found this image from 2011. Image is a screen capture of the announcement for an Autism Women's Network (AWN) radio show held on April 1, 2011, the first Autism Acceptance Day.  The text  says: "Happy Autism Acceptance Day! Join AWN Radio's Tricia Kenney as she welcomes Paula C. Durbin-Westby for this special broadcast. Paula will be discussing the importance of acceptance and how it affects the lives of Autistic people."






Saturday, March 28, 2015

#AutismAcceptanceDay5- Fifth Annual Autism Acceptance Day!

#AutismAcceptanceDay5 International Autism Acceptance Decade 2010-2020. Moving Beyond Awareness. original blue version

#AutismAcceptanceDay5. Autism Acceptance Day was started in 2011, and continues to gain momentum every year. I have a very overloaded schedule this month and so am going to post all the good links on Autism Acceptance Day. I am doing several interviews but those won't be posted right away.

Links list for 2015, which I will keep updating every chance I get!

ProLoQuo2Go is 50% off on Autism Acceptance Day, April 2 2015!

http://www.assistiveware.com/proloquo2go-50-autism-acceptance-day-april-2 

A new alternative to blue lights in April- #WalkInRed

http://walkinred.weebly.com/about.html

The #WalkInRed campaign is an effort by #ActuallyAutistic individuals to rally support for #AutismAcceptance.


https://www.facebook.com/events/441004906049419/ 



Please do searches on Autism Acceptance, Autism Acceptance Day, Autism Acceptance Month, Walk In Red. I have scheduling conflicts that do not permit me to search and put everything here right now. Please put links to ACCEPTANCE in the comments section and I will post them.


More links!

Celebrate Autism Acceptance Month and Win Your Own "Squawkers McCaw"

Autism Acceptance Day 2015 #AutismAcceptanceDay5

Ask an Autistic - Why Acceptance? Autism Acceptance Month 

Autism Awareness is Not Enough: Here’s How to Change the World



#AutismAcceptanceDay5 International Autism Acceptance Decade 2010-2020. Moving Beyond Awareness. Red version


Monday, April 14, 2014

On Labels, Awareness, and Community: Guest Article



On Labels, Awareness & Community
Cinder McDonald
March 26, 2014

I am Aspie.  I am also trans, genderqueer leaning toward male, gay, queer, physically disabled.  I am the mother of an Aspie young woman who stands tall and proud, has a busy social life and makes beautiful things.  I am the older brother of a nonverbal autistic man who sees shapes in clouds, finds endless wonder in car keys and tires, who signs “friend” whenever he sees Bert and Ernie on Sesame Street.  I am poly, with two husbands under one roof.  Poly means two incomes in addition to my puny disability check and it means I have enough help on-hand that I don’t have to have strangers coming into my house to provide personal care.   Sometimes I think I could drown under the weight of all these labels that seem to be stuck to me like stamps.   I should start introducing myself that way: “Hi, my name is Cinder, I collect labels and diagnoses”….

Tell me, what does it mean to be “aware” of autism?   I’ve never been quite clear on what all this “awareness” is supposed to do.   Lots of people are already very aware of me, since I am not the least bit shy with my opinions.  I’ve been told my secret superpower is pissing off people, making them look at things they’d rather not pay attention to.  Nobody can work up a good righteous outrage like I can.  I must admit such candor does not get me invited to too many parties and sometimes I feel sad about it.  Most of the time, I’m happy to be alone, to write, to express myself.

For all my intent to stay home and be an introvert, I find I am very good at starting groups and bringing people together.  I open my mouth, wonderful ideas pour forth, and the next thing I know, I’m having to act on those ideas.   Despite my great creativity and flair, I am terrible at fundraising.  Fortunately for me, I have two husbands who kindly indulge my group-starting, community-organizing addiction and don’t seem to mind too much when I spend household money building a float or buying lunch for young adult Aspies who rarely get to dine out.

Most Aspies in my generation had to grow up without knowing they were autistic.   Others were subjected to harsh therapies that harmed more than they helped.  We do our best, but our past experiences seem to hamper us more than we would like.   The Aspies of my daughter’s generation are different from us, they’ve grown up with knowledge of their identity.  They come into adulthood knowing about accommodations, from us, they get to see what autistic maturity looks like.  It’s less stressful.  I think it’s easier for them to embrace the power of community because of the wealth of tools they have.  Texting, Skype, Twitter and Facebook comes so easily to them.   When young Aspie adults form their community of choice, they do what other groups of young adults do.  They figure out housing.  They network to find jobs.  They go to school together.  They build long-term relationships.   Aspies tend to get along with other Aspies because of shared language, common interests and brain maturity relative to age.   We need to recognize that Aspie brains mature more slowly than neurotypical brains.   There are far too many Aspies who pushed hard in their early twenties, only to find themselves burned out and chronically ill in their forties.  

If you want really want to do something for people with autism, whether this month or any month, look for the autistic groups in your community that are run by people on the Spectrum.  They may not be the best advertised and I bet they are run on a shoestring, but they are there if you look hard enough.  Give of your time and money if you can.  I’m sure many of us could use help with transportation or organizing events.  Then next April, when you’ll see the awareness ads pop up, you can shrug your shoulders and say, “Awareness?  Ha.   I know folks on the Spectrum now.  Good people.  Good friends.”


Image of a lighthouse and Autism puzzle ship on the rocks. A rainbow beam comes from the lighthouse and shines on the rocks.

Friday, April 11, 2014

Why Autism Acceptance? Autism Society of Northern Virginia

Two great articles are featured at the link below. One is
a message from ASNV Board Member & Autistic Self-Advocate Samantha Bodwell. Samantha was a key person in getting ASNV to embrace the idea of acceptance rather than the usual cure-oriented rhetoric in April.
 
The other is a message from AutismAcceptance.org, which is an initiative of the Autism Society of Northern Virginia.


http://autismacceptance.org/page/why-autism-acceptance

Friday, April 4, 2014

Interview with Thomas Hassell- Autism Acceptance



I am interviewing Thomas, from Pennsylvania.


My name is Thomas Hassell my age is 52 and I live in downtown Mechanicsburg, Pa. I am originally from Bradford county in northern Pa a town called Towanda, I am a graduate of College Misericordia with a B.S. in business Admin. I have lived in Baltimore, Md and Carlisle Pa for periods of time I have one brother and three sisters and several nieces and nephews. I am a volunteer at the National Civil War Museum in Harrisburg and a volunteer at the Mechanicsburg Museum where I live.

Thomas, what is your life like as an Autistic person?

I guess what I can say here is that being an autistic has its good and bad points for the good points I am learning alot about myself I am a member of an adult autistic support group which I really enjoy and i am also a board member of our local Autism society which gives me a chance to hear of our autistic community problems and try to help. I guess some of the bad points are of the sometimes loneliness and sometimes feeling of still being an outsider especially at family functions.

What is the most difficult about being autistic?

I kind of answered that one above but I will repeat that it can be a lonely time being I live alone and also sometimes feel I am still an outsider at family functions.  I have never dated and don't have a girlfriend which sometimes I wish I had someone special in my life.


What is the most joyful, fun, exciting thing about being autistic?

The best thing about being autistic is getting together with our support group for our group activities which we do a couple of times a month

How has the Autism Acceptance Day/Month effort over the past three years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/ Month have to you now?

To answer the first question I guess the only thing I can say is it really has not affected me personally other than I know a lot of my friends know that I am autistic and have accepted it because I too have written about my life as an autistic on facebook. I think Autism Acceptance day/Month means that I hope more people become aware of the autism community at large and become more aware and not look down on us


What is one thing about acceptance that would make a difference in the world?

The more people in  the world become aware of Autism the less likely they to be afraid of us and get to know those on the spectrum because all of us on the spectrum just want to have friends because we do have a very hard time making friends


Tuesday, April 1, 2014

Interview with Erin Z.- Autism Acceptance



Interview with Erin Z., who is a prolific writer and writes about difficult topics in a compelling way.

My name is Erin.  I am 38 years old and was officially diagnosed with Aspergers two years ago under the DSM-IV criteria.  I am a single mom of two children who are both on the Autism Spectrum.   I am also a teacher and have a degree in Earth Science Education.  You might know me as Geeky Science Mom on Tumblr or The Aspie Teacher on Facebook.  

Erin, What is your life like as an Autistic person? 

Everyone on the Autism Spectrum is different. As the saying goes, “If you have met one autistic person, you have met one autistic person.” In my case, I am considered functional, but highly impacted.  I have sensory processing issues with auditory, olfactory, tactical, and taste. I have a form a synesthesia. I sense colors with different emotional states and with people. I guess you can say that I sense auras. I will also taste or smell colors.  It wasn’t until very recently that I discovered what synesthesia is.  I thought everyone experienced colors the way I did so I never said anything about it growing up.

I often say I have had 38 years of experience on this planet instead of stating my age. There is a reason for that. I am developmentally delayed. I see the world through the eyes of a much younger person, but I have the maturity of a person who has travelled around the Sun 38 times and have had all the life experiences that comes with that travelling.  

I also have problems with social skills. I can’t always find the words when I need to talk to people (selective mutism). I need to script out conversations beforehand.  I can’t always determine what emotion I am feeling (Alexithymia), especially when stressed and overloaded. When this happens I have to look online to find the word that matches what I am feeling. Then I can figure out what type of calm down activity I need to do to help me feel better. 

I still have meltdowns as an adult, but I can recognize them now and can act accordingly. Stimming helps me calm down and I stim when I am excited or stressed.  I feel so much better now, both physically and mentally, since I allow myself to stim. I am not trying to hide myself anymore and I feel better for it. I can’t pass for “normal” anymore, but it is not a big deal to me. I would rather be myself. I also want my children to feel that they can be themselves. I guess you can say I am trying to lead by example.

What is the most difficult about being Autistic?

The most difficult things for me as an Autistic person are the comorbid conditions that I have.  I also was diagnosed with Generalized Anxiety Disorder (GAD) at the same time I was diagnosed with Aspergers.  Anxiety already goes hand in hand with ASD, but GAD amplifies that anxiety.  My worries are very real, like financial concerns, the welfare of my children, and balancing my multiple jobs, but GAD makes the anxiety surrounding these issues that much worse.  My social anxieties are also amplified.  Since I was not diagnosed until I was an adult, I was never given help with social skills.  I have had to learn on my own by observing and mimicking those around me and I don’t always get it right.  I often am concerned about social faux pas since I have a history of making them.
I was diagnosed with PTSD ten years ago.  The primary reason was a medical trauma, but I experienced several successive traumatic events before the surgery and after the surgery.  It was during this time that I experienced Autistic Burnout.  Unfortunately, I had no idea I was Autistic at the time.  I received the wrong treatment, which greatly prolonged my recovery time.  It was also during this time that I learned I cannot tolerate anti-depressants, anti-anxiety medications, or any sleep aids for that matter.  I have paradoxical effects from these types of medications. Narcotics cause severe muscle spams in my chest which inhibits my ability to breathe properly.  Narcotics also don’t make me sleepy or do anything for the pain.  A major surgery is not a fun time to learn that you can’t tolerate narcotics.    

What is the most joyful, fun, exciting thing being Autistic?

Autism is interwoven into everything I am.  It is also interwoven into both my children. It is what makes us who we are.  I am very loyal and honest.  I can hyper focus and do tasks that non autistics might find daunting and/or mundane. I love to do research and I can disseminate information quickly in a user friendly format.  Due to the differences in my perception of situations, I can see viable solutions where others may not.

Being developmentally delayed also has some perks.  I get excited about seeing a rainbow and seeing the morning sunlight glisten off the dew that has collected on a spider’s web.  I love watching the clouds and am still amazed when you can see sun beams breaking through in the distance.  Even though I understand the science behind these phenomenons, I still see the beauty and magic in them. I feel I can still see the magic in the world despite what I have been through during my time on this planet.  

With my synesthesia, I can experience the world on multiple sensory layers.  This can overload me, but it also widens my perception of things.  My son also has synesthesia and we sometimes end up communicating in colors rather than emotion words when it comes to expressing our emotional states.  Colors have deep meaning to us.  See “My Super Powers – Brain Overload - Part 1” for more information - http://geekysciencemom.tumblr.com/post/40075122900/my-super-powers-brain-overload-part-1


How has the Autism Acceptance Day/Month effort over the past four years affected you personally?

For me, Autism Acceptance is purely that, acceptance. It is not just acceptance in the people around you, but acceptance of yourself as well. In the two years since I was diagnosed, I have found myself, my true self, the one I had hidden away for so long. I feel so much freer now and I am healthier for it.

What is one thing about acceptance that would make a difference in the world?

Seeing people as people with all their strengths and weakness and accepting them no matter what their neurology happens to be.

Do you have children or other family members who are Autistic? 

My son has told me that he likes having Aspergers, because he believes it makes you not want to hurt people. He truly believes this. He can’t stand the thought of hurting anyone or anything.  My son has also told me that he really has no idea how to make a rude comment to someone.  My son is eleven years old and he was diagnosed under the DSM-IV criteria when he was seven years old.  My daughter, who is thirteen and has Autism Level 2 (under the DSM-V criteria) and several other comorbid conditions, is such a caring and creative person and she likes who she is despite her struggles.  Neither of my children wants to be “cured” nor do I.  (My kids have given me permission to write this.)