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!

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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?

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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!

...seeing things from a different perspective...

"Imagine a world where Aspergers was the norm, and non-autistics or neurotypicals were the minority. Let's try it: Those who feel the need to constantly be with a variety of friends are considered fickle. Those with no propensity for computers and science are called geeks. Those with no special interest are thought to be ungrounded and lost. Those without obsessive focus have to take classes to cultivate it."

~Rudy Simone

What do you think?

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...stare, don't stare...make up your mind...

"I don't really understand why it's considered normal to stare at someone's eyeballs"

~John Elder Robison

What do you think?

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...creative solutions...

"When living with a neurological condition (or with a loved one who has one), it can be very easy to focus on the challenges and limitations.  But in my life, I have found that focusing on abilities, finding new ways to adapt, have been crucial to my successes in life. Seeking those solutions can even be seen as a form of creativity."

~Lynn Soraya

What do you think?

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...learning the 'rules'...

"Girls are generally recognized as superior mimics. Those with [Asperger's Syndrome] hold back and observe until they learn the 'rules', then imitate their way through social situations."

~Tony Attwood

What do you think?

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...there is no epidemic...

"As the diagnosis of autism is increasing the diagnosis of mental retardation is decreasing. And more and more on the other end, the high end, more children who are just a little bit off, who ordinarily you would not single out now are being described as perhaps Asperger's syndrome or on the high end of the autism spectrum, so I don't believe there is an epidemic."

~Gerald Fischbach

What do you think?

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...a way of being...

Saying you "have" something implies that it's temporary and undesirable. Asperger's isn't like that. You've been Aspergian as long as you can remember, and you'll be that way all your life. It's a way of being, not a disease.

~John Elder Robison

What do you think?

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June Finds & Insights

Articles/Sites/Blogs

• Because I'm an Activist Makeup Artist - This post is not from an Autistic person, but I think the sentiments on being disabled (especially invisible disabilities) are important. 

Memes

'No more forcing myself to act "normal" even in the privacy of my own home!' - So true of my experience, and the pervasive attitude that ableism has on people. When you are trying so hard to be normal for the rest of the world, that you can't even relax enough to take off the mantle of repression at home...

Found on my Autistic Women's Group

Books

Though none of this month's offerings struck me as must-reads, I am curious about the first two books...

• Working with Girls and Young Women with an Autism Spectrum Condition: A Practical Guide for Clinicians
• Girls with Autism Becoming Women
• A Guide to Programs for Parenting Children with Autism Spectrum Disorder, Intellectual Disabilities or Developmental Disabilities: Evidence-Based Guidance for Professionals

Movies/TV

Elementary
Last month, I shared about a new autistic character introduced to the show, that of Fiona Helbron (a.k.a. "Mittens"). I thought she would only be a one-shot, but they decided to make her a love interest for Sherlock instead. Can I say I'm all for this? Especially after seeing Season 4 Episode 18 "Ready or Not". In this, Fiona decides to break up with Sherlock because she feels he is too careful with her. After being informed by Sherlock that he was dealing with his own issues, she says they should have sex and proceeds to jump his bones.

I was really pleased to see an Autistic woman taking agency over her own body. Too often, popular media treats us as fragile, not only because of our disability, but also because we are women. I look forward to seeing how much more Fiona develops.

Resources

If you've never heard of Tip of the Asperg, then you're missing out. This lovely person shares raw experiences via YouTube and Facebook. Check Tip out, and check out this cool traits document...also from Tip. Big thanks go out for granting me permission to share it! You rock, Tip!
https://www.docdroid.net/0hIIPmP/adultasdtraitstip-finalcopy.pdf

Insights

This month I spent no time on this blog, but trust me when I say the ol' gears are always turning. I'm hoping to share some new posts this coming month on tools for helping executive function, and I'm close to done with my insights from April. It's weird to think of yourself as perfectly normal and disabled at the same time. It conflicts with your views of yourself, what you can and can't do, no matter how hard you try. I think for a lot of us, we come to terms with it every day. Each day is a new challenge to try to work through.

Until next month...take care of yourselves, fellow Aspies!


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

...different, not defective...

"From my clinical experience, I consider that children and adults with Asperger's Syndrome have a different, not defective, way of thinking."

~Tony Attwood

What do you think?

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...an important and valuable characteristic...

"Asperger's syndrome has probably been an important and valuable characteristic of our species throughout evolution."

~Tony Attwood

What do you think?

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...measuring the success of our societies...

“To measure the success of our societies, we should examine how well those with different abilities, including persons with autism, are integrated as full and valued members."

~ Ban Ki-Moon, Former United Nations Secretary-General

...the movement of rivers and stars...

“We contain the shapes of trees and the movement of rivers and stars within us."

~ Patrick Jasper Lee

May Finds & Insights + Introduction

I'm starting something new for the blog. I come across a lot of interesting things throughout my research, and I try to share them on social media, but I like the idea of creating a "resource" post. So here it is. I'll share different things I find monthly (and some that may be older, but from which I find fresh insight), and maybe a little insight to go with. 

Note: I want to note that I do not endorse any of the products, services, or works that I list in these posts, unless specifically noted. I simply find them interesting, and think you might, too. Trigger warnings don't often occur to me to note, but I'll see what I can do. Also, I took some time off social media this month, so you may see a lot more "finds" in subsequent months.

Articles/Sites/Blogs

• I’m a “highly functional” Autistic. It takes a lot of work. - This post got to me big time. I struggle with so many of the things she mentions in here, particularly when she talks about food specificities (I hate when people call me picky), and the "Transportation" section. Be sure to check out "A Note to Readers" at the end.
• The underdiagnosis of autism in girls is a story of gender inequality - I found this one while researching for my own post on women on the spectrum (which you can check out here). I recommend this. Great read.
• Scientists just beginning to understand autistic adults’ unique health needs - Important new research for people on the spectrum, and those who love them.
• “FIFTEEN THINGS THEY FORGOT TO TELL YOU ABOUT AUTISM” — BOOK REVIEW AND INTERVIEW WITH THE AUTHOR DEBBY ELLEY - Great interview. I don't usually read accounts of autistic children written by parents (mostly because I'm an adult on the spectrum with no interest in kids of my own), but this has me wanting to add this to my "check it out" list.

Memes

Invisible disabilities...

Source

Source

Books

I found a listing of books being released throughout 2018 (and into 2019), so I'll post the ones that have released the previous month. If I have read them, I'll also do a review (likely in its own post). I admit that a few books looked offensive to me personally, so I have decided not to include them. Like I said, this will be what I find interesting and wish to share. I'm not interested in sharing hateful or ignorant works. However, if you need to see some of the things people write about Autistics that can be perceived as harmful, you are more than welcome to search through the list yourself.

• Asperger's Syndrome: Understanding Each Other (For ASD/NT Couples): by the girl with the curly hair (The Visual Guides) (Volume 6)
• Asperger's Children: The Origins of Autism in Nazi Vienna - There's been a lot of talk lately about how early autism research related to Nazi eugenics programs, so I'm curious to check this out.
• Out of Autism
• Speaking for Ourselves: Conversations on Life, Music, and Autism - This definitely peaked my interest. So many choices, so little time and money.
• Sex and the Single Aspie - From what I've seen of Artemisa's style, I think I'll enjoy this read.
• Affect, Animals, and Autists: Feeling Around the Edges of the Human in Performance - As a Theatre professional, this very much peaks my interest. Going on the list.

Movies/TV

Elementary Season 4 Episode 9 - "Murder Ex Machina"

It's really rare to find decent portrayals of autistic people on television and in movies. So, I was only mildly - and pleasantly - surprised to see one on Elementary, CBS's modern take on Sherlock Holmes. I generally like this show, and have been working through it with my family. 

This particular episode has them investigating a string of murders that may have been committed by a computer hacker, but that paled in comparison to the portrayal of the autistic computer prodigy. I found the portrayal of Fiona Helbron (a.k.a. "Mittens") to be done well overall, although I thought it was interesting that they planted the idea that Fiona couldn't lie because she was autistic. Though we often get into trouble for being too truthful, there's no substantial research proving that we are categorically incapable of it. Still, it's an interesting watch, and I definitely recommend this one. I'd like to see other Autistics' reaction to her performance, so please comment below. You can currently find this on Hulu, though I'm not sure if it's available for non-premium accounts.

Other Resources

ACN Omaha

If you live in the Omaha, NE metro area, this might be a good one for you to check out. I met the staff there; they seem really committed to assisting us with dignity, and continuing to evolve as a community resource. I'll undoubtedly write more on them later.

Insights

I'm still wrapping my head around Autism Acceptance Month in April. I've tried and failed several times to get a post up and running on what I got out of it. It was a lot to process this month, starting the blog anew and focusing heavily on advocacy for the first time in such a personal way. So stay tuned; I've got more posts on the way, and I'll get that one up, too.

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

...the reason I'm successful...

“My autism is the reason I’m in college and successful. It’s the reason I’m good in math and science. It’s the reason I care."

~ Jacob Barnett, sixteen-year old math and physics prodigy

...travelers from the distant past...

“Although people with autism look like other people physically, we are in fact very different…We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that might give us quiet pleasure."

~ Naoki Higashida, The Reason I Jump

...the ultimate square pegs...

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.”

~ Paul Collins