Thursday, April 6, 2017

Beyond Awareness: Autism Acceptance Panel

Hello, and welcome to day six of my Autism Acceptance Month post series!

In today's post, rather than discussing a specific Autism-related issue as I've done in the past posts, I'm simply going to highlight an upcoming event that everyone who's interested in Autism acceptance and lives in Elmhurst Illinois and/or the surrounding area should check out.  It's a panel discussion entitled Beyond Awareness that will feature at least four Autistic panelists of various different ages and backgrounds speaking about our own experiences with Autism.

The panel is taking place on Thursday April 13th at York High School in Elmhurst Illinois in forum room A294.  It will start at 6:30 pm, and we're predicting that it will be over by 8:00 pm unless the audience question and answer session lasts longer than anticipated.  It is open to the public, and former Elmhurst mayor Pete DiCianni will be facilitating the discussion.  The information is all listed out on the flyer below, which should be screen-reader accessible (I put the image description in alt-text, please let me know if it isn't working).

I hope to see you there!

Image description: The flyer's text reads "Beyond Awareness / A discussion panel aimed at increasing societal understanding of Autism and Autistic people through public dialogue. / Time: 6:30 pm / Date: Thursday, April 13th, 2017 / Location: Forum room A294, York High School 355 St Charles Rd, Elmhurst, IL 60126 / Open to the public.  Includes an audience question and answer session. / Featuring a small group of Autistic teens and adults, along with former Elmhurst mayor Peter DiCianni as discussion facilitator / Image credit for Autism acceptance ribbon: Corina Lynn Becker of"  (Slashes in the text description represent text breaks).

Wednesday, April 5, 2017

Comorbid Disabilities: They're Not Autism

Hello, and welcome to day five of my Autism Acceptance Month post series!

In today's post I'm going to address a common issue faced by those who advocate for Autism acceptance: comorbid disabilities.

What are comorbid disabilities?

Comorbid disabilities are disabilities that occur alongside Autism or any other disability.  Some of them, like Autism itself, are completely benign and have no negative effect on the quality of life experienced by the individuals who have them, but others, like epilepsy, can be devastating.  They aren't caused by Autism, and they typically can't be considered the cause of Autism, but due to genetics it's unlikely for Autism to be a person's only disability.

In short, the disabilities that are comorbid to Autism aren't Autism.

Why do comorbid disabilities pose a problem to proponents of Autism acceptance?

The reason they pose such a huge problem for the people who advocate for Autism acceptance is that not everyone recognizes the difference between Autism and the disabilities that commonly accompany it.

When harmful comorbid disabilities get conflated with Autism it becomes almost impossible to convince the people doing the conflating that Autism should be accepted, not eliminated.  I can't count the number of times I've heard the argument that Autism needs to be "cured" because someone's Autistic child has devastating, life-threatening seizures.  The fact that the seizures are the result of epilepsy or some other seizure disorder, not Autism, doesn't seem to be understood by these people.

The same thing happens with tons of other comorbid disabilities.  I've seen everything from gastrointestinal issues to sleep disturbances to Tourette's Syndrome blamed on Autism and used to defend the idea that Autism needs to be "cured."  I've even been told by one of Talk About Curing Autism's individual chapter leaders that their organization's main focus is curing comorbid conditions (which I doubt), but that they feel no need to change their name to something that reflects that claim.  No wonder so many people think Autism is some sort of devastating illness!

News flash: Autism is not responsible for the symptoms of comorbid disabilities.

What everyone who uses comorbid disabilities to defend the idea that Autism should be "cured" needs to understand is that "curing" Autism won't do a thing about any comorbid disabilities an individual has.  It will significantly alter the way that individual's brain works, likely leaving them unrecognizable to those who knew them in all but physical features, but it will not cure their comorbid disabilities.  The "cure" will have been for nothing, and the individual that used to be will have undergone too significant a change to even be considered the same person.

Every justification about how forcibly rewiring Autistic people's brains is worth it because it will improve our quality of life is reliant upon the belief that Autism isn't benign, a belief that typically stems from the assumption that Autism is responsible for all comorbid disabilities an individual might have.  The reality of the matter - that even after you've destroyed all the Autistic people by metaphorically ripping out an integral part of who we are whoever's left in our place will still have to contend with any comorbid disabilities we had - shatters the effectiveness of those justifications.

What's the takeaway here?

Don't use comorbid disabilities as an excuse to advocate for the elimination of Autism/Autistics.  If you or your Autistic loved ones have comorbid disabilities that are detracting from their quality of life advocating for a "cure" for Autism won't do anything to help.  Advocating for a cure for the comorbid disabilities in question, however, can do a world of good without threatening the existence of the whole Autistic community.  Likewise, it is possible to oppose a "cure" for Autism and to practice Autism acceptance without giving up on finding a cure for harmful comorbid disabilities.

So keep practicing Autism acceptance - be on the right side of history!

Stick around for more Autistic-written, Autism-related content, and feel free to leave a comment or send me an email.  Thanks for stopping by!

Image Description:  The words "Comorbid Disabilities: They're Not Autism" are printed in sketchy letters on a semi-transparent white square that's centered on a background of multi-colored flowers.

Author's Note:  I have given up on trying to make sure every post published by 12:00 noon this month, because I'm often writing these posts the same day I'm publishing them and I have commitments that get in the way of having them done at the same time every day.  Once April is over and I've switched to a once weekly posting schedule you can expect much more consistent posting times.

Tuesday, April 4, 2017

Looking Autistic: Stereotypes Spread By "Awareness"

Hello, and welcome to day four of my Autism Acceptance Month post series!

In yesterday's post, Autism Speaks: Are They Really That Bad?, I provided examples of some instances in which attempts to raise awareness of Autism failed in overwhelmingly ableist ways.  The negative effects of those campaigns are often obvious, and can easily be traced back to the campaigns' messages.  Today I'm going to address one of the more subtle effects of flawed awareness campaigns: false stereotypes.

There are very few Autistics who haven't, at some point in time, been described as not looking Autistic.  This is in spite of the fact that Autism has no inherent visual indicators, meaning that it's impossible to accurately determine whether or not someone is Autistic based on their appearance.  You can't even determine whether or not someone's Autistic by looking at a scan of their brain, much less by looking at their face and/or body.  Nevertheless, complete strangers often feel the need to announce that Autistics they have just met, or even just seen from a distance, don't look Autistic.

I myself have been described to my father as not looking Autistic... by a woman who had seen me walk from his truck to the door of a school building I was attending summer camp for Disabled teens at.  That was the first time she'd seen me, I was in her field of vision for less than a minute, and I never even looked in her direction.  There was absolutely no way for her to gain the information she would have needed to make a well-reasoned guess as to whether or not I was Autistic, yet she somehow arrived at the conclusion that I wasn't and felt the need to share that conclusion with my father.

So, what do people think Autistics look like?

Ignoring the inherent rudeness of announcing to a complete stranger that their Autistic child does not look Autistic, that encounter still raises the question of what people think Autistics look like.  Given that the only things this woman could possibly have noticed about me were my physical appearance and the fact that I was able to walk across a parking lot unaccompanied, here is a list of factors that I think likely contributed to her flawed assessment of me:

  • I am female.
  • I am capable of planning.
  • I do not run away at the first opportunity.
  • I do not stim in very obvious manners at all times.
  • I am capable of accurately assessing risks (usually).

I can't think of anything else she could have noticed during that encounter that would have contributed to her idea that she was looking at a non-Autistic teen.

Every item on that list is irrelevant to whether or not I am Autistic, but because of flawed efforts to raise awareness of Autism every item on that list is also likely to be treated as evidence that I am not Autistic.  Do you know why this is?  It's because many attempts to raise awareness of Autism unintentionally perpetuate the following myths about what Autism is and what Autistic people look like:

  • Autism is most common in white males.
  • Autistic people need constant supervision.
  • Autistic people rock and/or flap constantly.
  • Autistic people are incapable of independence.
  • Autistic people are rarerly capable of vocal speech.

Think about it.  How often have you seen an Autism awareness campaign quote the false statistic "Autism is four times more common in males than in females?"  How many times have you seen an image of a young white male paired with an article on Autism?  How often do you attend conferences on Autism and see hardly any Autistic people of color present?  How often do you see videos of Autistic children rocking, flapping, or pacing as an example of what Autism looks like?

How often do you see stereotypes portrayed as the reality of Autism?

I'll be astounded if anyone can honestly answer "never" to all the above questions.  The truth of the matter is that attempts to raise awareness for Autism regularly perpetuate the very stereotypes that they're supposed to be aiming to dispel.

What can you do to help contradict stereotypes?

Given how frequently they feature in Autism awareness campaigns, stereotypes about Autism aren't likely to go away on their own anytime soon.  Autistic people and our allies, however, can do a good deal to help dispel them.  Here are two major ways in which we can do so:

  • Highlight the diversity of the Autistic community.
    • If you are hosting any sort of Autism awareness/acceptance event make sure to include Autistics from a wide variety of backgrounds.  Featuring Autistics of varying ages, races, genders, and orientations, along with Autistics who have different support needs and use different types of communication is imperative if you expect people to learn that we aren't all young white cisgender males who need constant support. 
  • Call out and correct false claims about Autism/Autistics.
    • If you see someone making a false claim about Autism and/or Autistic people, then, by all means, call them out on it.  You'll either help educate them on the subject of Autism or at least let the other people hearing/seeing their claims know that they aren't being entirely truthful and that there are better sources from which to gain information on Autism (for example, actual Autistic people).

Stick around for more Autistic-written, Autism-related content, and feel free to leave a comment or send me an email.  Thanks for stopping by!

Monday, April 3, 2017

Autism Speaks: Are They Really That Bad?

Hello, and welcome to day three of my Autism Acceptance Month post series!

For those of you who missed yesterday's post, #RedInstead: Why Not Blue?, which was published several hours late due to technical difficulties, in it I explained why I do not approve of, participate in, or endorse the Light It Up Blue campaign.  My main reason for not supporting the campaign is its association with Autism Speaks, a group that many Autistics consider a hate group and that I firmly believe does far more harm than good to the Autistic community.

My views of Autism Speaks are, unsurprisingly, regularly challenged.  I've recently been told that my attempts to dissuade local businesses from participating in campaigns associated with Autism Speaks is "an insult to all [Autistics]" because "attention to the cause is good."  I'm not entirely clear on whether or not the person in question realized that I myself am Autistic, but, regardless, their complaints were not unprecedented, and I've heard that type of objection more than enough times to realize that many people believe Autism Speaks is doing more good than harm simply by directing massive amounts of attention to the existence of Autism and Autistic people.

So, is Autism Speaks really that bad?  Does the awareness they raise justify the harm they do?

My answer, of course, is that Autism Speaks really is that bad, and that no amount of awareness can justify the harm they've done and continue to do to the Autistic community.  That may seem harsh, but you have to take into account the type of awareness they raise.  Autism Speaks' brand of awareness is not consistently positive, or even neutral.  It frequently involves fear-mongering and dehumanization, which, for obvious reasons, are negative things to incorporate in awareness campaigns.

Here are two notable examples of the aforementioned awareness campaigns that incorporate fear-mongering and/or dehumanization:

In their infamous I am Autism advertisement Autism Speaks declared that Autism works "faster than pediatric aids, cancer, and diabetes combined," and that it will "make sure that your marriage fails," "bankrupt you," "fight to take away your hope," and "plot to rob you of your children and your dreams."  The whole advertisement is an anti-Autism/anti-Autistic nightmare, but those quotes really stood out in terms of how abhorrently ableist they were.  It was clear throughout the entire ad that Autism Speaks didn't mean for Autism to be viewed as an integral part of who Autistics are, but rather as an external entity that steals "normal" children from their families and takes joy in ruining lives.  If that's not a blatantly obvious example of fear-mongering then I don't know what is.

In another video produced by Autism Speaks entitled Autism Every Day a woman named Alison Tepper Singer discussed a time at which she contemplated driving off a bridge with her Autistic daughter, Jodie, in the car.  Singer claimed that it was "only because of Lauren," her non-Disabled daughter that she didn't do it.  No one made any real effort to point out that killing your own child is wrong, regardless of that child's neurotype.  No one tried to shield Jodie, who was in the room and able to hear everything that was said, from hearing that her mother had contemplated killing her and that it was only her mother's commitment to her neurotypical sibling that kept her alive.  They acted as if she could neither understand nor feel.  If that's not dehumanization then I don't know what is.

What else has Autism Speaks done wrong?

Producing multiple negative awareness campaigns isn't the only thing Autism Speaks has done wrong - not by far.  I really doubt that I can even cover all of their ways in which they have failed/harmed the Autistic community in a single blog post, but I've put together a list of some of their more memorable failures (the vast majority of which they haven't apologized for and some of which are still ongoing issues) here:

  • Autism Speaks featured the Judge Rotenberg Center, an infamously abusive "school" for Disabled people, as a resource for Autistic people and our families.  (Source)
  • Autism Speaks stole an Autistic activist's intellectual property and lied about it repeatedly.  (Source)
  • Autism Speaks threatened an Autistic teen with completely unwarranted legal action for making an online parody of their website.  (Source)
  • Autism Speaks allocated only 4% of their funds to providing family services (only some of which were even helpful to Autistic people) in 2010.  (Source)
  • Autism Speaks allocated exactly the same percentage of their funds to family services in 2013 as in 2010.  (Source)
There are many more failures attributable to Autism Speaks, but hopefully the above list gives you a good idea of what I'm talking about when I say that Autism Speaks does more harm than good.  If not, visit the post on A Roundup of Posts Against Autism Speaks and read as many posts as it takes to figure out what the main problems with Autism Speaks are.

Stick around for more Autistic-written, Autism-related content, and feel free to leave a comment or send me an email.  Thanks for stopping by!

Image Description:  The words "Autism Speaks: Are They Really That Bad?" are printed in sketchy letters on a semi-transparent white square that's centered on a background of multi-colored flowers.

Sunday, April 2, 2017

#RedInstead: Why Not Blue?

Happy World Autism Acceptance Day!

Today, April 2nd, is World Autism Acceptance Day, more commonly known as World Autism Awareness Day.  It is often celebrated with puzzle pieces and blue lights, but as I mentioned in yesterday's post, Autism Acceptance: A Primer, neither puzzle pieces nor blue lights are positive symbols for Autism or Autistic people.

Why not Light It Up Blue?

The Light It Up Blue (LIUB) campaign is the reason for the sudden appearance all the aforementioned blue lights in April.  It is a "signature campaign" of Autism Speaks, an anti-Autism/anti-Autistic organization that many Autistic people consider a hate group.  The fact that the campaign is associated with Autism Speaks is, in and of itself, more than enough reason not to participate in it, but that's not the only problem with it.

Light It Up Blue also perpetuates the false belief that Autism is most common among male individuals (the color blue was picked because it's often viewed as a "male color").  This belief is based upon a diagnostic bias that favors males and results in Autistic males being diagnosed far more frequently than non-male Autistics.  Campaigns like Light It Up Blue reaffirm the false beliefs and stereotypes that lead to the diagnostic bias, which prevents it from being resolved.

Light It Up Blue does the exact opposite of "shining a light on Autism."  It spreads false beliefs about Autism and directs support towards an organization that actively shuts out and silences Autistic voices.

What's the alternative?

The #RedInstead campaign and Tone It Down Taupe, as I mentioned yesterday, are both wonderful, pro-Autism/pro-Autistic alternatives to Light It Up Blue.  I, personally, prefer the #RedInstead campaign, just because red is more visually noticeable than taupe, and because #RedInstead is a slightly more well-known campaign, but it's really just a matter of personal preference.  Frank Ludwig, another Autistic activist, has summed up the prevailing sentiment in his post How Autism Speaks Hijacked World Autism Awareness Day - Anything But Blue, where he declares that "Lighting it up any other colour means supporting diversity, our right to speak for ourselves and the concept of autism acceptance."

So go #RedInstead, Tone It Down Taupe, or use just about any other color that isn't blue to celebrate Autism acceptance both today and throughout the rest of the month.  Just remember to take into account whether you live in an area where certain colors are associated with gangs - your safety should always come first, so please don't risk your life for one of these campaigns.

Stick around for more Autistic-written, Autism-related content, and feel free to leave a comment or send me an email.  Thanks for stopping by!

Image Description:  The words "#RedInstead: Why Not Blue?" are printed in sketchy letters on a semi-transparent white square that's centered on a background of multi-colored flowers.

Saturday, April 1, 2017

Autism Acceptance: A Primer

Hello, and welcome to my newly-opened blog, Life (Un)Worthy of Life!

If you've taken the time to visit the About The Blog page, you'll have noticed that the usual posting schedule I'll be following on this blog is one post per week, with posts typically being published every Saturday at 12:00 noon, central time.  This month, however, I will be publishing a new post every day, in honor of Autism Acceptance Month, which spans from April 1st to April 30th.  Today's post, Autism Acceptance: A Primer, will aim to introduce and define the concept of Autism acceptance, which should minimize the level of confusion people experience in regard to the following Autism Acceptance Month posts.

So, what, you might be wondering, is Autism acceptance?
Simply put, Autism acceptance is the phrase used to describe the action of accepting Autistics as whole people, and not treating us as puzzles needing to be solved or broken things needing to be fixed.  It is in direct opposition to the actions of attempting to "cure" Autism and/or supporting attempts to "cure" Autism, making it impossible to both support the idea of "curing" Autism and practice Autism acceptance.  Not everyone understands that last bit, which is why, unfortunately, anti-Autism/anti-Autistic endeavors sometimes get tagged with #AutismAcceptance on social media.

Here are some ways to practice Autism acceptance:

  • Listen to Autistic people.
    • This one should be obvious, but for some reason it doesn't seem to be.  Autistic people are the only real experts on the subject of Autism, so listen to us when we talk about how our brains work and what is and isn't helpful for us.  
  • Presume competence.  
    • Autistics, as a group, are not inherently incapable of doing anything that non-Autistic people can do.  Do not assume we are helpless just because our minds work differently from yours.  Give us opportunities to try new things, even if you aren't sure that we'll succeed.
  • Default to identity first language.
    • Most members of the Autistic community prefer to be referred to using identity first language (ie: Autistic person) rather than person first language (ie: person with Autism), and it's important to respect that preference by defaulting to identity first language when you're not referring to an individual who has specifically requested to be referred to using person first language.
  • Don't support anti-Autism/anti-Autistic organizations.
    • Some of the world's most well-known, most popular Autism-related organizations are organizations that do not respect Autistic people's right to exist.  Boycott these organizations.  Autistic people shouldn't have to put up with being represented and spoken over by organizations that view our existence as a tragedy.
  • Ditch the puzzle pieces.
  • Go #RedInstead.
    • The "Light It Up Blue" campaign is a negative, anti-Autism/anti-Autistic campaign which was started by an organization that many Autistics view as a hate group.  I'll address this further in tomorrow's post, but for now, please look into the #RedInstead campaign and Tone It Down Taupe, both of which are wonderful alternatives to "Light It Up Blue."
That was by no means a comprehensive list of all the ways to practice Autism acceptance, but hopefully it serves as a helpful starting point for those who are new to the concept.  We all have to start somewhere, and if you make an effort to do the things listed above then you'll probably be on the right track.  Just remember to keep up the effort until practicing Autism acceptance becomes natural, and don't be afraid to accept criticism and learn from your mistakes.

Stick around for more Autistic-written, Autism-related content, and feel free to leave a comment or send me an email.  Thanks for stopping by!

Image Description:  The words "Autism Acceptance: A Primer" are printed in sketchy letters on a semi-transparent white square that's centered on a background of multi-colored flowers.