Where do we go from here?

This weekend, I attended Autistics Present Symposium in Bellevue, Washington.  It was an amazing time, and I got to listen to and meet a bunch of people that I’ve admired for years. I’ve been to plenty of autism conferences before, but having an autistic space where the experience was centered on us was something new entirely.  It wasn’t something I knew that I needed until I was there. I’ll definitely be back next year.

One of the workshops I attended was focused on writing and finding autistic characters written by autistic people, led by the wonderful Neurowonderful. I’d been thinking about getting back into writing fiction after a longish hiatus, and their workshop made me think even more about doing so, so that’s something that will be in the works in the next few weeks.

In addition, though, it made me realize how much I had neglected this blog.  I started writing back in 2012, and I have never been a weekly or sometimes even monthly updater here, but I definitely haven’t written anything since April 2017.  That is entirely too long, and I definitely need to change that.  I take to Twitter quite a bit nowadays, but this blog is often more accessible for people to find out information about autism, what it’s like to be an autistic parent, and especially what it’s like to be an autistic person closer to 40 years old than to 20 or 30.

I posted on my personal Facebook yesterday that I could do a whole blog series on my blog search terms alone and probably come up with a year’s worth of topics to talk about.  I think they would help younger autistic people figure out that it is possible to have a successful life and be autistic, and it’s possible to do so if your autism intersects with other parts of your identity, and how to manage that.  I haven’t found the answers to every question myself, but I’m working on it, and I want to share that experience with you, my readers.

So for now, I’m committing to at least one new post per month.  There will likely be a post after this one is published, at least within the next week, because I need to explain how my life has changed since April 2017, because it has changed drastically in some very, very good ways.  I really want to commit to posting once a week, but I cannot make that promise because of time management, executive functioning and the like, but I can promise that I will be writing at least once a month.  That is an achievable goal for me.

So until next time, thank you for reading. I hope to make this a space where folks can ask questions and gain a better understanding of what the world is like for me and possibly other autistic people like me.  If you have any questions, you can always email me at thecaffeinatedautistic@gmail.com.  Thanks so much for reading!

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Blogging Against Disablism Day 2017: Ableism in the workplace

I always breathe a bit of a sigh of relief whenever BADD comes around, not because it’s an easy topic to address, but because it falls on May 1st, which means that April, aka, Autism Bewareness Month, is finally over.

Today I want to write a little bit about my experience in the workplace.  I am a 36 year old college graduate.  I hold a bachelor of arts degree in English with a minor in religion and in education from a fairly prestigious liberal arts university.  With help from an impressively good disabilities department, I was able to graduate a single semester after I theoretically *should* have.

I am currently the cook in a childcare center.

Other jobs I have had include Language Arts teacher, English teacher, college level tutor in various subjects, barista, deli employee, craft store employee, grocery store cashier, and fast food manager.

I hear the words of every teacher and every parent and grandparent in my head on almost a daily basis – “she’s so smart! If only she would apply herself!”  (I am not a she, but that doesn’t stop the voices in my head or change the content of the message itself.)

Some people might say that I’ve settled.  I can’t even count the number of people who have told me that I’m better than the jobs that I’ve had (or currently have).  I can’t even tell you how many people have stood with their teenage children, pointed to me, and said “look.  That’s what happens when you don’t stay in school.”  In those instances, I was tempted to carry a photocopy of my degree with me so I could tell them that I did stay in school, but that 80% (perhaps more) of disabled people are unemployed or underemployed.

I know it wouldn’t have helped.

I am an autistic person, a hard of hearing person, and a person who has ADHD.  I face a number of barriers to an accessible workplace.

  • I have difficulty focusing, especially when interrupted.  This is my one biggest issue, because of what I do, I often have teachers/classrooms/etc ask me for individual items while I am trying to do other parts of my job.  Getting myself back on task once I’ve prepared and delivered the item to the appropriate person is an enormous task, and sometimes I do look like a deer in the headlights.
  • I cannot hear you, especially if you are behind me, I cannot see your lips, and once I tell you that I’ve not understood what you’ve said, you simply repeat it at the same level with the same intonation (which usually involves dropping your voice at the end of words or sentences).  Please stop getting annoyed or offended if I tell you I still don’t understand you, and for goodness’ sake, please don’t tell me “never mind”, especially if it is something important (and relevant to my job).
  • My accommodations aren’t an invitation to speak with me at length about why I do or do not deserve them.   They aren’t for funsies, or because I’m getting special treatment.  They’re because I literally cannot function without them.  Yes, I know you have to deal with fire alarms on the fly, but I will literally throw myself under a table and curl into a ball and have a meltdown if I’m not warned.
  • I had to fight tooth and nail to receive the most basic of accommodations, and that was only after I paid out of my own pocket to go see my doctor and had him write me a letter.
  • I get through the day with lists. After almost a year and a half at the same workplace, with a predictable schedule and working within the same parameters, these are mostly in my head, but there are lists regardless.
  • Timers also help.  I sometimes use unconventional means of timing myself, but that’s neither here nor there (but sure does invite unnecessary and rude comments).
  • I know what you’re saying about me and people like me, even if I can’t physically hear you.  (Your disabled students know it too.)
  • I cannot do small talk with you.  You assume things about me because I stay quiet.  But I have opinions about things, but you wouldn’t like them if I said them, and talking is distracting me from the work I have to do.  It’s not a personal thing, but sometimes it is.  Refer to the previous point about what you say about your disabled students.  I see it, and I know, and nah, I don’t always want to talk to you about what you did last weekend because I just don’t care.
  • Not everything is worth the emotional or mental energy.  I’m not sorry about that.
  • I go home every day exhausted.
  • The kids – those ones you don’t really treat like real people – they’re the reason I keep coming back.  They’re sometimes overly loud and noisy, but they’re loving and appreciative and soaking up everything you pour into them.  They see how you treat people you consider lesser.

I wish all of this was unique to this one job, but I’ve seen it unfold in various ways in every single job I’ve had.  The hearing difficulties have only developed over the past three years, so I’ve definitely seen an uptick in comments regarding that vs. my other slightly less obvious disabilities.  I’ve had jobs that had no problem accommodating me.  I’ve had other jobs that questioned me at every turn, and some who downright said “we can’t do that” when I asked for accommodations.

I keep wanting to celebrate the fact that April is finally over.  I have so many good things happening in the upcoming months.  But we have so very far to go in the fight for independence and equality.  I want to do more, but sometimes? I’m just trying to survive.

 

Autism Speaks *still* does not speak for me

Most of the folks who read my blog do so because they googled the phrase “Why is Autism Speaks bad” or some variant.  They know me to be an outspoken person and not afraid to explain why Autism Speaks will never be among the organizations I support.  This is, of course, not in any way on a whim or by some ridiculous grudge. There are a host of reasons why Autism Speaks doesn’t speak for me or for other autistic people.

But I must admit that my original post on them isn’t 100% accurate anymore.  There have been two notable changes to their organization within the past year and a half  – 1. They have removed the word “cure” from their mission statement and 2. They have added two autistic board members to their organization.

So, of course I’m sure this makes people question the veracity of the claims that I and others have made in the past.  Surely if they’ve added autistic adults to their board and they’ve eliminated “cure” under their mission statement, they must be doing better, right?

Well, I suppose in theory that could be true.  But so far, I’ve seen very little to prove that is correct.

The MSSNG project is still their initiative, a collaborative genome sequencing project between Autism Speaks and Google.  As of March 6, 2017, they are still funding research into finding a genetic cause for autism. There is a huge problem with not only the research being done (seizures are still not autism, no matter how hard you try to make them so), but the ethics of making 10,000 autistic people’s genomes available to researchers without much thought to the consent of the autistic people in question.

Autism Speaks plagiarized the writing of an autistic advocate, and has yet to apologize or make it right.

When Autism Speaks celebrated their tenth anniversary, they took to Twitter with the #AutismSpeaks10 tag. Autistic advocates soon told the world what we thought using the same tag. Autism Speaks changed the tag to #AutismChampions because clearly, autistic people having opinions about what kind of organization they run is clearly too much for them.  (It’s okay, we took over the second tag too).

Autism Speaks took down their ratings option on Facebook when too many autistic people rated them poorly.

Autism Speaks has utterly failed to ever seriously address the murders of autistic people by their caretakers.  Their response to the attempted murder of Issy Stapleton by her mother, Kelli Stapleton, was to give a list of resources for people “in crisis”.  One can only infer that they meant “parents who want to murder their autistic children”.

Autism Speaks lobbied (successfully) for then-President Obama to allocate federal funding for autism to the tune of $1.3 billion over five years (beginning in 2014) via the Autism CARES Act (previously known as the Combating Autism Act).   Most of that funding would be/has been used for funding grants to monitor autism prevalence rates, train medical professionals to detect autism and develop treatments in conditions related to autism (this is probably seizures-related again). Link.

The modification of Autism Speaks’ mission statement replaced the word “cure” with the word “solutions”.  It now reads

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
Others have commented on the eugenics background of the word “solutions” used in this manner here.

Autism Speaks’ budget still only allocates 3-4% for “services”.  The bulk of their budget goes to marketing, salaries, and research.

In fact, if you use their Grants search tool, and select “Family services” and select “Adults”, you will see that they funded no grants that fall under these parameters.

Autism Speaks lobbies for legislation for insurance companies to cover Applied Behavior Analysis, or ABA, a form of behavioral training created by Ivar Lovaas, who was also part of the “Feminine Boys Study,” which was the precursor to what we know of as “Gay conversion therapy”.  These two therapies have many similarities, not the least being their founder being the same person.

One person’s account of ABA from the point of view of a former ABA therapist is here.

This has been just a small sampling of the issues still surrounding Autism Speaks.  There are many more, and I’ve addressed these in previous posts here and here.

I’m sure there’s more than a few of you who are wondering now what Autism Speaks would need to do in order for it to be enough for autistic people.  Well, I can only speak for myself, of course, but there’s a few things I can think of.

  • Stop funding research into a cure and/or “treatments”
  • Stop funding research into the “causes” of autism.  We exist.  No need to try to prevent that.
  • Cut all ties with the Judge Rotenberg Center.
  • Fund resources for autistic people, especially adults who lose support when we graduate high school/age out of many programs.
  • Fund and back initiatives that help us with employment, as a huge portion of autistic adults are unemployed and underemployed.
  • Acknowledge that therapies meant to make us look “indistinguishable from peers” have consequences. ABA seeks to make us compliant, and that often leads to not believing it’s okay to say no, which can contribute to the astronomical percentage of sexual abuse among disabled people (particularly women).
  • Apologize and make amends for horrific ad campaigns like “I Am Autism” and “Autism Everyday”.  No, deleting them from the Autism Speaks YouTube channel is not sufficient.
  • Place autistic people at the core of your organization, not just as token members of your board.  Autistic people have different abilities and needs and gifts.  Any job that a non-autistic person is doing within Autism Speaks can be done by an autistic person somewhere.  There are many autistic-run organizations that show it can be done.
  • Listen to autistic people.
  • LISTEN TO AUTISTIC PEOPLE.
  • No, seriously, one more time – your motto is “It’s time to listen”? Do it. Prove you’re not all talk.  Listen to what autistic people are saying.
  • Accept us for who we are.  Don’t try to change our natural state of being.  We are autistic.  We are not broken neurotypical people.  Find out what our challenges are, and help us rise to meet said challenges with the tools we already have.
  • Work on changing society.  You as the largest Autism organization in the United States, and certainly the most recognizable one, have such an amazing opportunity to use the voice you have, in society, in legislation, in advocacy, in science, in education to amplify our voices.  Work on making it acceptable to be autistic.  Stop painting us as burdens on our families.
  • Acknowledge that abusing and murdering your autistic loved one is not acceptable in any case.  Join with the disabled activists around the world and mourn us on the Disability Day of Mourning.

It’s a big list, but all in all, I don’t think it’s too much to ask.  If autistic and other disabled people can do it, you well-paid executives at Autism Speaks should be able to manage it all just fine.

Suzanne Wright, co-founder of Autism Speaks, has died

So I received news yesterday that Suzanne Wright, co-founder of Autism Speaks, had died of pancreatic cancer. 

At first, I didn’t know how to feel. Was I wrong in the inclination to harbor some anger toward her? Was I wrong to dislike her, to even speak ill of her in light of her recent death? 

I’ve decided that I’m not. While I completely feel sad for those who loved her (her family and friends), this doesn’t erase the harm that she’s done or the choices she’s made in how she speaks about people like me. 

She had a responsibility, as the leader of the most recognizable autism “charity”, to talk about us with dignity and respect. She did not do that. Instead, she used her voice and her resources to harm us. She went to the Vatican and talked about how terrible our parents’ lives are, while comparing herself to St. Francis. 

She wrote a call to action, calling autistic people “missing”. She’s compared autism to cancer, diabetes, HIV/AIDS. 

I’m sorry for her family but I’m not sorry she isn’t able to inflict harm anymore. 

Also interesting to note is how much compassion fellow autistic folks have had toward her. So much for those ideas of “no theory of mind” and “no empathy”, hmm?
 (I am aware that some autistic people don’t have empathy and that empathy can be a very flawed and useless concept, but stating that autistic people cannot have empathy is what I’m snarking about here) 

Disability representation: Do it right (Or The Case of John Watson’s disappearing PTSD)

I’ve been spending a lot of time lately thinking and reading about disability in media.  A part of this is inspired by a post I read on tumblr coupled with a post by Alyssa of Yes, That Too, which you can read here.

I’ve been considering why sometimes disabilities are erased in media, and sometimes it appears to me that it’s for a really ridiculous reason like “it’s inconvenient”.  That seems to be the case with Clint Barton (Hawkeye) of the Marvel movieverse, as he is deaf in several versions of the comics.  It’s also the case for Peeta in The Hunger Games, who is an amputee after the first book, and who walks with a prosthetic leg.  I presume that for the most part, it’s inconvenient for writers to work that into the storyline, and in my personal opinion, that’s a really crappy reason when so many of us are starving for the crumbs of representation of people like us.

Other times, it seems like maybe the writers aren’t aware of the fact that they’re writing a disabled character.  With all the horribly written disability narratives out there (“House Rules” by Jodi Picoult comes to mind), this seems surprising, but it’s not, really, not when you really consider disability as a part of the human experience.  Many (presumably abled) people work and socialize and hang out with a variety of disabled people, and don’t necessarily pinpoint certain traits as symptoms or characteristics of a disability. It’s probably part of the reason why we have such a difficult time convincing abled folks that we need supports and accommodations.  It isn’t necessarily because they don’t think disabled people deserve accommodations (well, some do, I’m not denying that).  It’s because they don’t see us as disabled.  They just think we’re lazy or annoying or quirky.

So I’ve been reading and watching various things (mostly watching), and seeing where show runners and film producers and writers got it right, and where they got it wrong.

2016-07-25

[image description: Series of four tweets, indicating that I have retweeted them.  The author is India Valentin @valentin_india and all are dated July 23.

In essence, Moffat is saying that psychological conditions caused by PTSD aren’t real, go away easily, and ultimately are just fakery.

He doesn’t want to deal with a disabled Watson, with Watson who carries the war with him.  It’s easier to have a Watson cured by adrenaline.

The Sherlock Watson who has disappearing psychosomatic PTSD-induced injuries is a magic cure.  It’s inconvenient for Moffat, so it vanishes.

For the love of God, people, never present a character as disabled, magically make the disabililty go away, and pretend that’s totally fine.]

A friend of mine retweeted the previous tweets, and it just finally hit me what I’ve had an issue with regarding BBC Sherlock’s presentation of John Watson.  I realize that symptoms of disability vary from day to day, absolutely. But the reasoning given for why this is happening to John Watson is “fire your therapist”, “you’re not haunted by the war, you miss it” and “you’ve missed this”, and any number of things that the Holmes brothers have said to him.

That particular example is a huge issue for me, because Dr. Watson is one of my favorite literary characters of all time.  I’ve appreciated him in many different versions of Arthur Conan Doyle’s beloved stories.  What I’ve appreciated about most versions, however, is that while they don’t necessarily focus on the trauma that he experiences, they don’t hand wave it away, either.  BBC Sherlock absolutely handwaves it away.  It’s acknowledged, and then it’s “cured” at least while John’s life revolves around Sherlock.  Once Sherlock is removed from the picture, it re-emerges, which indicates a co-dependence or possible addiction issue, which is a whole other issue.  I wish that John’s PTSD was given the necessary and responsible treatment that it should have been.

Speaking of PTSD, though, I’ve been in the midst of a rewatch of Grey’s Anatomy, and I absolutely have to give a huge kudos to Shonda Rimes for her multilayered, multifaceted, respectful and realistic treatment of PTSD.  She gives us a variety of characters from different backgrounds, from different traumatic experiences.  You have people who come from loving homes, people who come from emotionally distant and abusive homes, people for whom their fellow doctors are their only family, and Shonda Rimes throws them into these horrific, traumatic experiences – a shooting, a plane crash, having to operate on the spouse of someone you know and love.  The PTSD induced nightmares are realistic and frightening, and she gracefully explores the dynamics of relationships and how they’re impacted and how outsiders may not understand, and may never understand.  The aftereffects of trauma are explored and handled extremely well.  There are mental health professionals present to help these characters work through their trauma, to acknowledge it and to give them tools to move forward with their lives.

I cannot praise that show enough.  It is difficult to watch precisely because it is so well written.

I can think of a few examples like Grey’s Anatomy where disability is addressed and addressed well.  Jessica Jones and How to Get Away with Murder both deal with PTSD as well and do a fairly good job of it.  Switched at Birth, despite its rocky start, explores D/deaf issues with grace and integrity.

We still have a long way to go.  There are so many examples of disabled characters being treated and/or written terribly (*cough* The Big Bang Theory *cough*).  There certainly aren’t even close to enough disabled actors being hired to portray disabled characters.  About 95% of the actors hired for these roles are abled.  That’s a problem that must be addressed.  There are still very few of us disabled folks telling our own stories.

But it seems like the tide is turning a little bit.  Non-disabled authors/writers/show runners/etc.? Listen to us.  Let us tell our own stories when possible.  If we tell you something is offensive or wrong, listen and make an effort to change.

 

Autscriptic

Oh my gosh, this is the best thing I’ve ever read on unpacking the “you don’t look autistic” BS.

PLEASE read and share and take this to heart. And the next time you think about saying “you don’t look autistic”, please reconsider. Consider how much effort “passing” takes.

— The Caffeinated Autistic

 

 

You don’t look autistic. Yes I do. You don’t act autistic though. Yes I do. Yeah, but you’re not like “properly” autistic. Yes I am. You can make eye contact. Yes I ca…

Source: Autscriptic

Vaccines Don’t Cause Autism, But That’s Not the Point | The Scientific Parent

http://thescientificparent.org/vaccines-dont-cause-autism-but-thats-not-the-point/

Vaccines don’t cause autism, that’s true, but what’s the underlying concern about autism. Why is it something to be afraid of?

It wasn’t until I was driving home from class one day and was listening to C-SPAN radio. I was in my mid-20s and living in Washington, DC. This would seem weird anywhere else in America, but in DC it’s perfectly normal. The panel discussion being broadcast was teens and adults with autism and how federal funding could better support them. As the show closed, the moderator asked if anyone on the panel felt a vaccine had caused their autism.

Silence.

One teen panelist spoke up, “no, but it hurts that you would ask that question.”

The moderator’s tone softened, he apologized and asked why. I’m going to paraphrase the boy’s response because it has been several years and for the life of me I have not been able to find a transcript of this event anywhere, which has driven me to madness. If anyone from C-SPAN reads this and knows the talk I’m referring to, please send me a transcript! The panelist’s response was incredibly moving and I wish I could give him credit for it and do his response justice.

As I recall his response was, “because it makes me feel like I’m damaged or broken, when I’m not. I was born this way. My brain just works differently than most other people’s. When people talk about vaccines and autism it makes me feel like I’m not a person but a ‘bad result.’ It reminds me that no one wants a kid like me and parents will risk their kid’s lives and everyone else’s just to make sure their kid doesn’t turn out like me.”