Celebrate Autism!: Why "Awareness" Has Got to Go

Let me state right now that I am not against awareness. Quite the opposite, in fact. I'm a big fan of cultivating self-awareness...which is why this month is so utterly baffling.

In case you weren't "aware" (couldn't help myself), April is Autism Acceptance Month! Many Autistics prefer this over Autism Awareness Month, the original name for this advocacy period. Using "Awareness" for autism advocacy has actually done more harm than it has helped. This term has caused a medieval thought process to prevail over research, policy, and society in regards to Autism. So, instead, many (dare I say most) Autistics prefer to call it "Autism Acceptance Month."

You might be wondering how I know this.

November Finds & Insights

Articles/Sites/Blogs

• The M Word: We need to talk about adult autistic meltdowns: Behavioral aspects of autism have been on my mind lately. Autistic advocates continue to fight for diagnostic criteria and understanding that focus away from behavior and look at other factors, such as sensory issues and physiological concerns. Autistic people are most often looked at for the way in which their behavior is considered "abnormal" and I find myself worrying about this aspect in my own life. The way I act and react to life situations is under constant scrutiny. Despite my best efforts, I'm not always judged according to my best efforts. So, I've been reading up on the stories of others who suffer from meltdowns and what that means as an autistic person. This article gives not only a decent illustration of what a meltdown is but also tips to autistic and allistic people alike on how to prevent and abate meltdowns.
• 9 Signs of High Functioning Autism That I Missed: Great article on some lesser-known clues that someone you know (including yourself) might be on the spectrum.
• Why Many Autistic Girls Are Overlooked: One of the more and more articles pointing to the infrequency of female diagnosis as an institutionalized prejudice issue, as well as an issue of difference in presentation. 
• Autistic girls 'need more school support': Interesting report on friendship dynamics and issues for autistic girls in life and school situations.
• The Educational Tyranny of the Neurotypicals: A great article, and well worth the read. I found much I agreed with many of his points.
• A working definition of hate in three acts: This article surprised me in that it is rather a bit older, but the sentiments fit right in with the rhetoric of today, both in discussions about autism and the larger discussion of prejudice today.

October Finds & Insights

Been busy preparing it for the holiday season. Therefore, I'm not even going to try for eloquence this month. Enjoy!

Articles/Sites/Blogs

THE EDUCATIONAL TYRANNY OF THE NEUROTYPICALS by Joi Ito

I like what this says about education...namely that there is a major divide between our needs in education today as opposed to yesteryear. The continued drive to make neurodiverse people (or people with any disability or difference) "normal" is one of the many things that makes our society the mess that it is. Worse, it is turning out entire generations of people who are plagued by mental illnesses that are gained only after they are pushed toward this unrealistic and, frankly, oppressive ideal.

As the article suggests, we need to move away from that process and start celebrating the unique gifts and talents that neurodiversity brings, not just to autistic and other neuroatypical people, but to our society in general.

One of the points that were made in the article is how critics of the self-directed learning process - who argue that such a process is "unstructured and verges on irresponsibility" - may be wrong; that such processes can work for everyone. I will say, certainly, that the so-called "structured" process did little to prepare me for the "real world," as I suspect is one of the critics' fears.

Excellent article.

THE INVISIBLE PRICE OF ACCOMMODATION — Renata Jurkevythz

This is an issue I struggle with all the time. As I noted in my post "Executive Function - The Silent Burden", I come from bootstrap people: farmers and the military people. I also come from minorities and single-parent families for whom the sole parent is a woman. None of these people have ever had it easy. No one "accommodated" anything about their lives or, in many cases, even treated them with basic human decency, because their demographic was unacceptable in society. They struggled, succeeded, and simply survived as much on their own will and resilience as possible. I am proud of the people I came from. They are strong, and I have striven every day of my life to be as tough as they are. So as a mixed woman with African and Cherokee heritage, who is also autistic, I often wonder at what point it is okay to stop and say, "I need help," be it from the people in my life, or society at large, and to not feel guilty about that. And I do feel guilty. I don't want to be a burden; on the state, my place of work, my family, or myself; not ever. I believe we should strive and be responsible for the things we want and have in life. In a society that not only does not seek to make my life easier but has been designed in such a way as to be difficult to achieve anything, how does one reconcile their feelings ("I should do it on my own") with their reality ("I can't do it on my own")? And when does one stop being the one to not only carry the difficulties of our own lives, but also the shame of asking for help and responsibility of the failures of said society? When do we stop paying the price for a need we cannot change, despite all efforts to the contrary? 

A good piece on the additional struggles that society heaps on those who are different.

Also, check out "Why Did ‘Disabled’ Replace ‘Handicapped’ As the Preferred Term?" and "HowDoVaccinesCauseAutism.com" 

Memes

Found quite a few this month.

Many of these have sources within the meme; however, I try to note sources when they are available. If you feel I have not given further attribution, please leave me a comment with the source, and indicate which meme to which you are referring, and I will be happy to fix it.

Books

I don't post as many books on the parent side of things, because many of those books focus too much on how difficult it is to be the parent of an autistic child and acknowledge too little that it's the child who is autistic and will struggle through a society that doesn't understand him/her for the rest of their life. One thing I'm noticing about books coming out this month is a possible turnaround in parenting books from "Here's how to fix your child" to "Here's how to fix your thinking about your child's autism." It's heartening, and it makes my curious/possible recommendation list of books longer, as well *smirk* As per usual, I am not in any way actually endorsing these books, merely sharing what looks like a good read, or helping to dispel current disinformation about what the reality of autism is.

• My Child's Different: The lessons learned from one family's struggle to unlock their son's potential
• When Autism Becomes the New Awesome: The Story of How My Son Beat the Odds and Secrets Parents Need to Know [I feel the need to note that I get an iffy vibe from these first two, but would love to hear any reviews from autistic adults who feel they're "getting it right"]
• Vaccines Did Not Cause Rachel's Autism: My Journey as a Vaccine Scientist, Pediatrician, and Autism Dad
• Autism in a Decentered World (Routledge Advances in Disability Studies) This one has me particularly curious for its use of art to understand autistic brains more.
• Me and Mister P. Possible great read for children with autistic siblings/relatives/friends
• Savant Perception: Knowledge From An Unknown Realm
• Safety and Consent for Kids and Teens with Autism or Special Needs: A Parents' Guide With the #MeToo movement showing no hint of slowing down, it is no surprise to see a book like this, and no less timely. We often think of women as being victims of issues of consent, but it goes all the way around, and people who are neurodiverse or have some type of disability (as well as the elderly), are particularly susceptible.
• The Defining Autism: A Guide to Brain, Biology, and Behavior Looks like this could be a good overview, and even dispel some ridiculous notions about autism.

Insights: A Little Advocacy

Overall, the need for systemic change is in the air across the U.S. Hopefully, that will mean a step forward for autistic and other neurodiverse people, rather than a step backward from what is a pretty industrial perspective into an even more medieval perspective. More thoughts on this later.

Do your research and go vote! November 6th.

What kinds of resources and cool things have you found lately? Share in the comments below!

---

SystemAndromeda.com (under construction!) - Facebook - Twitter

© Content property of Andromeda Ross, all rights reserved.

News & Updates: Patreon Could Change Everything

What I've Been Up To...

It's been quite the year thus far. After relaunching this blog in April, I kind of went...kaput. So much of my research on autism illuminated some of my greater challenges. I frankly wasn't prepared. It's been hard to process and cope with the new information. But I rallied, enough to get a lot of projects rolling this summer. You can see some of what I've been working on in my Quarterly Review Post. Still, things move slow when you have autism...slower than you'd like. I am always trying to juggle the driven, ambitious part of myself with the part that wants to crawl into bed, exhausted from simply coping. It makes it hard to do your own thing, to forge your own path.

Fortunately, I found something that should help with this.

Patreon

Patreon connects creatives with the audience that loves them. It allows them to engage more with each other through exclusive content on a membership-based platform for as little as $1/month. I love it. It means I get to keep creating, and you get to keep getting the benefit of that which I create. Note the orange button up on the left-hand side? Go check out my page, see what you think, and if you like what you see, if you like what I do here, I encourage you to become a patron. Remember, patrons will not only keep getting posts here, but they will also get exclusive and advanced content that is only on Patreon!

For all my fellow Autistics out there that are struggling to do their own thing in a world that doesn't believe they can or should, you might look into this as an option.

What's Next...

Well, that's the question, isn't it? While I haven't had much in the way of time to share my thoughts on here, it doesn't mean I'm not having them. There are a lot of thoughts, and it will take time to process them enough to get them jotted down here. I know I'll be doing more advocacy as time goes on; there's not enough of a voice out there for us. In the meantime, it will probably the new year before I start posting on the reg again.

...and, uh...yeah.


What do you think?

---

SystemAndromeda.com - Facebook - Twitter

© Content property of Andromeda Ross, all rights reserved.

July, August & September Finds & Insights

I've been rather absent from the scene over the last few months, due to the projects I've been working on. I finished putting together my photography website this summer. It required putting aside other projects, such as this blog. Shameless plug:

www.trickyfishphotography.com

In addition, I've been putting together a Patreon page, to help me keep up with my other projects and better engage with my audiences. It's launching today, and I'll be doing a post about it here soon.

Between the above, a family vacation, and some other projects and adventures, I've been busy, all spoons used before I could even think about doing autism research, much less autism reflection. So, despite this being three months' worth of finds, it's a bit...*ahem*....sparse this month.

Articles/Sites/Blogs

• I was 35 when I discovered I'm on the autism spectrum. Here's how it changed my life. - This could be the story of how my autism discovery/diagnosis went. A good read.
• The Protective Gift of Meltdowns - Excellent article on meltdowns. Anyone who experiences them, or has been in the presence of one, should really read this.
• a very incomplete list of autistic experiences; no particular order - I related most to the bits about movies, reactions to lights (a particularly sore point with me), and sensory overload.
• Hannah Gadsby’s “Nanette” and Disabled Queer Trauma - Thoughts on this recent comedic revelation. I loved Hannah, and it spoke to me on so many levels.
• How autistic adults are being let down by the healthcare system - Not a surprising story. 
• How to Build an Audience on Facebook: 9 Tips That Helped 'Autistic Not Weird' Gather 82,000 Followers on Facebook in Three Years - This is less about the autism, and more about success in social media, but it's nice to see a autism success story.

Memes

In fact, I particularly enjoyed the meme Mr. Bonnello created.

Meme by Chris Bonnello (a.k.a. "Autistic Not Weird")
autisticnotweird.com

I prefer... "albatross"...
Source

Books

Released in August:

• My Special Friend Sam: Respecting the Needs of Children with Autism - I like what I've seen of this book so far. There needs to be more books for people outside the spectrum, especially at a young age, normalizing autistic behavior and respecting boundaries for autistic people. If it's done well enough, then I'd like to see it in classrooms everywhere. 
• Being with Asperger's: So That's How It's Done! - I'm curious about this one. Someone with Asperger's partially viewed by someone who lived with them, and partially through their own words, full of their brand of humor, etc. Could be cool.
• Spectrum Women: Walking to the Beat of Autism - Been waiting for this one to come out for a while. Perspectives from several different women on the spectrum. If nothing else, this can tell me which authors I'd like to purchase next based on style and how I connect to their stories.

Released in September:

• Asperger’s Syndrome and Jail: A Survival Guide - I can't imagine trying to navigate jail. I think I'd lose my mind. This could be a really important tool, though I'd like to see one for guards and wardens, as well as see the justice system get an overhaul, so that not so many people with developmental disabilities (as autism falls under), are sent to jail in the first place.
• Autism in Heels: The Untold Story of a Female Life on the Spectrum - I'm really excited to read this. While most information written about the spectrum from an autistic's point of view is important, I particularly want the perspectives of women on the spectrum, especially as it pertains to our tendency to mask, making our lives a bigger struggle, sometimes, than that of our male peers.

Insights

Though I've been taking time away from the blog, autism is never far from my mind. It can't be. It is part of who I am. I read somewhere that finding diagnosis was like finding a Rosetta Stone to the self (need to find that source). I wholeheartedly agree. If it weren't for my diagnosis, there are so many things I still wouldn't understand about myself; so many things I wouldn't be able to make happen in my life. ...of course, there are a lot of things I can't make happen for the very reason that I am autistic. It's a weird little balance. And I'm doing the best I can. 

What kinds of resources and cool things have you found lately? Share in the comments below!