Fa la la la la . . . Racism

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Yesterday, during this festive season, my adult, autistic daughter went to a local Walgreens to get her Covid booster shot. She had an appointment and she had her vaccination card with her. Luckily she had a few other things stored on her phone.

For those of you who don’t know her, my daughter is Chinese by birth, adopted as a baby, and a naturalized U.S. citizen. The people behind the counter at Walgreens said she couldn’t get the shot because she was Chinese and China “caused Covid.” They said she couldn’t get the shot because she was an illegal immigrant (their phrase, not mine). She showed them a copy of her American passport on her phone–they claimed she had photoshopped it.

They said she wasn’t old enough to get the shot without parental permission, so she showed them her driver’s license. You guessed it–they said she had photoshopped it.

They said she didn’t have an appointment. She showed them the appointment code on her phone. They said they couldn’t give her the shot because she didn’t have health insurance (Covid shots don’t require health insurance). When she showed them her insurance card anyway, they claimed (I swear I am not making this up) that Aetna was not a real insurance company!

They said she needed to have a college degree to get the shot (??!!??). She showed them a picture of herself at her college graduation.

They said they didn’t have any shots left (even though other people were there waiting for shots). A minute later, they actually offered a shot to my daughter’s friend, who is white.

At this point my daughter and her friend began walking around the store, readings statistics about the Omicron variant off of their phones, and lamenting very loudly that she would be involuntarily spreading the variant because she hadn’t been allowed to get her shot.

Finally, the other people waiting for their shots began yelling at the staff. One man, bless his heart, threatened to call the police on them. When the nurse heard the noise, she came out of her little room and asked what was going on. Then she immediately called my daughter back and gave her the shot. The whole process had lasted about 3 hours.

I know other people have gone through racists shit like this, and much worse. But I am SO very proud of my daughter for sticking to her guns. She had a meltdown (understandably) afterwards, but by golly she got her shot!

Now, if you’ll excuse me, I’m going to go raise hell at the pharmacy myself.

What Will It Take?

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Just heard that the circuit court in Washington, DC, has ruled in favor of the despicable Judge Rotenberg Center in Massachusetts. The Center will be allowed to continue using electric shocks, not as therapy, but simply to keep its autistic patients under control. This is a sad day. Torture is alive and well in the United States.

Passing and Exhaustion

"Passing", Anxiety, Autism, Disclosure, Employment, Human Rights, Masking, Normalization, , , , , , ,

“I identify as tired.” [1] –Emily Ballou

Autistic people who can appear “indistinguishable from their peers” pay a huge price for that achievement.  The cost is exhaustion—exhaustion to the point of incapacity, of burnout, of despair.  In the absence of a “typical” neurology, it takes a tremendous amount of mental and physical energy to maintain the façade of normalcy.  And the energy taken up by that process is not available for work, for play, even for self-care.  In a blog post often cross-posted and referenced by other members of the autism community, Kassiane Sibley offered a particularly rich discussion of this issue.  The passage is very long, but I want to include it in full because the language is so evocative.  It opens with a word often used by the online autistic community: “allistic”—meaning someone who is not autistic.

The Allistic Emulator software we run on our Autistic operating system needs constant attention. Have you ever run an emulator program? Like all of them, mine is slow, it is buggy, and it takes up processor power that’d be better off being devoted to another task. And it constantly needs upgrading to perform anywhere close to spec. . . .  When I gave a shit about my safety & about the people who taught me this–which was everyone in my life in my youth, as that’s how these things tend to work–I was constantly upgrading my emulator. Constantly relearned more in depth performances. It made me tired, anxious, cranky, and it failed frequently. The failures were distinguishable in the worst kind of way.  Failures were marked in tears. In full on meltdowns. In self loathing and self injury. Inability to do anything–eat, sleep, move–because of exhaustion and inertia. Did I mention self loathing? Severe anxiety. Self isolation (if I do it first they can’t!). Intimately detailed, ritualized recitations of all the ways I failed at being a human being. Because keeping up the act of humanity is what is required to be thought of as human. How very Lovaas.  So much energy was put into being a real person that I didn’t have the cognitive capacity to do as well as I could at any of a number of things. Between the day to day facade and flat denial of my visual support needs, all my learning bandwidth was diverted into running my shitty, self defeating emulator.[2]

This desperate effort does not, cannot stop with childhood.  “High-functioning” autistic people’s “emulator software” requires constant maintenance and upgrading throughout adult life, sucking away energy that might be devoted to more productive activities.[3] 

Adult autistics trying to pass have to focus intensely on all kinds of things most of rest of us never even consider.[4]  If they are lucky enough to have a paying job, for example, they must still keep the “allistic emulator” going without respite.  They have to work while dealing with the demands of their autistic neurology, without ever revealing that they are autistic—because “coming out” as autistic is likely to cost them their job.  Simply getting to work can be overwhelming.  For instance, riding a bus, requires not only dealing with unpleasant sounds and smells, but also keeping track of somewhat unpredictable multi-step procedures—a struggle for people with executive functioning issues.  You have to find the right bus stop, get on the right bus, pay the fare, move through the crowd on the bus to look for an available seat, watch for the right stop, move through the crowd again to get off, get from the bus stop to the work site, etc.—all while looking as “normal” as possible.[5]  Once you get to work, you face multiple sensory challenges.  Flashing lights on computer screens, and overly-bright fluorescent lights (which also, by the way, make a low level buzzing noise many autistics find intolerable), cause headaches and dizziness.  The constant noise as people move around the room, talking on the telephone or to each other, is not just “background noise” if you are one of the many autistic people who can’t distinguish between different layers of sound.  The overwhelming office wall of sound makes it difficult to understand what your boss or the person on the phone is trying to tell you, and embarrassing when you make a mistake.[6]  Intense smells in the bathroom and lunch room make you nauseous.  You are constantly aware of the uncomfortable tightness or scratchiness of work clothes.  You may even have to struggle to maintain the correct physical appearance.  Michael Scott Monje (the pen name of Athena Michaels-Dillon) describes what it’s like to “artificially hold” her face, for hours, to hide the fact that her eyes are not symmetrical and that her mouth naturally twists so that one side is open.[7] 

Employment also consists of a multitude of supposedly simple social interactions—involving eye contact, small talk, and constant snap judgments about appropriate responses.  All of this can provoke intense anxiety.  “I am exhausted at the end of a work day,” writes Judy Endow,

because it takes a great deal of effort for me to continually stifle my reactions to sounds, sights, smells and movements that others do not typically notice. I have to particularly pay attention to conventional social mannerisms such as remembering to look at people during conversation, track which words are ‘work words’ and which words are ‘social fluff words’ and respond accordingly. I work at this because I like to be able to fit in and in many respects my continued employment depends on it.[8]

Autistics trying to “pass” as neurotypical at work cannot use their best coping mechanisms—they can’t use stimming to release tension, they can’t hide in a dark, quiet room, or have a complete meltdown on the bus–because this will break through the neurotypical disguise and expose the autistic beneath.  (The meltdown on the bus may also lead to a police call and involuntary hospitalization.)  All you can do is suck it up.  Yet as one autistic blogger puts it: 

What [the people around me] don’t see is my suffering. They don’t know that sometimes I am panicking on the inside or going through sensory overload right in front of them. How could they? . . .  I learned to hide these things years ago. Nobody sees me freaking out, knows when I am having stomach issues, or my head is pounding from the florescent lighting of the office I work in two to three days a week.  I don’t complain. I smile, push forward, pull up my big girl panties and do what I have to do to make sure that I am able to provide the best possible life for myself.[9]  

The coping comes at home, like this: “For every hour that we manage to pass, we spend two or three or five recovering. We pull off a great passing act at work and pay for it by needing the whole weekend to recharge.”[10]  Or:  “That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse.”

The harder these autistic adults work at passing, the higher the price they pay in exhaustion; the more exhausted they get, the weaker their ability to keep up the act.  Michael Scott Monje is a successful writer and a university lecturer.  But she has trouble keeping her face looking “normal,” and she also has trouble continuing to speak “normally,” as fatigue sets in:

I can talk for extended periods, but the more tired I get, the more my speech impediment slips out. It starts as a stutter, then I go tonally flat, and eventually I lose control over my enunciation and start to sound like the stereotypical autistic. Usually I also get frustrated and have a hard time keeping myself from shouting when this happens, because I stop being able to say the words I intend to say, and instead I insert similar-sounding but incorrect words, like saying “speak” when I mean “steep”. When it gets really bad, I will be able to see the word in my mind’s eye, as if I was silently reading, but I will not know how to say it out loud. [11]

In other words, this intelligent, accomplished person who is sometimes able to be “indistinguishable from her peers,” will eventually collapse into her natural, non-speaking autistic state when she becomes just too tired to keep up the act anymore.

[1] Emily Paige Ballou, “I Identify as Tired,” on The Thinking Person’s Guide to Autism website, December 31, 2019:  http://www.thinkingautismguide.com/2019/12/i-identify-as-tired.html.  Ballou is using a phrase taken from a famous routine by autistic comedian Hannah Gadsby.

[2] Kassiane Sibley, “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog, November 7, 2013, now moved to her Time to Listen blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.  Compare Trogluddite, in the “Is Camouflaging Bad?” discussion on the Wrong Planet website, July 9, 2018:  https://wrongplanet.net/forums/viewtopic.php?t=366036&p=7954962.

[3] Emily Paige Ballou, “I Identify as Tired,” on The Thinking Person’s Guide to Autism website, December 31, 2019:  http://www.thinkingautismguide.com/2019/12/i-identify-as-tired.html.

[4] Kate, “Passing,” on The Thinking Person’s Guide to Autism website, September 14, 2012:  http://www.thinkingautismguide.com/2012/09/passing.html..

[5] See the “How common are public transport issues in people with ASD?” discussion on the Wrong Planet website, November, 2011:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=179933&start=16.

[6] See, for example, youngeezer, in the “Cannot Stand the New Office” discussion on the Wrong Planet website, November 27, 2013:  https://wrongplanet.net/forums/viewtopic.php?t=245949;  and the “The Negative Impacts of Open Offices” discussion on the same website, October, 2017:  https://wrongplanet.net/forums/viewtopic.php?t=355333.

[7] Michael Scott Monje (Athena Michaels-Dillon), “Not That Autistic,” originally published on her blog, Shaping Clay (http://www.mmonjejr.com/2013/01/not-that-autistic.html), but updated (among other things, to add the information about her facial muscles) for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

[8] Judy Endow, “Losing an Autism Diagnosis,” on the Aspects of Autism Translated blog:

http://www.judyendow.com/autistic-behavior/losing-an-autism-diagnosis/.

[9] “Anna,” “Off the Spectrum:  How Autistic Are You?” from the Anonymously Autistic blog, :

https://anonymouslyautistic.net/2016/08/09/off-the-spectrum-how-autistic-are-you/.  On the long-term costs of passing, see also Emily Paige Ballou, “The Unrecovered,” on the Thinking Person’s Guide to Autism blog, January 11, 2020:  http://www.thinkingautismguide.com/2020/01/the-unrecovered.html.

[10] Kassiane Sibley, “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.

[11] Michael Scott Monje (Athena Michaels-Dillon), “Not That Autistic,” originally published on her blog, Shaping Clay, in 2013, but updated for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

Uh Oh. Here comes data…

Autism, Human Rights, Neurodiversity, , ,

Dear Folks. As you know, I’ve been working for years now on a book on autism and human rights. I’ve recently been looking for publishers, and one of them, on their submission portal, asked how long the book was. So I went back and counted words.

Whoops! It’s way, WAY longer than anyone is going to publish or most normal (autistic or neurotypical) people would want to read. Being who I am, I need to provide data to back up the points I make. But the data is making the book far too long. So–change of plan.

I’m going to take most of the data and detailed arguments about the data out of the book and put it here on my blog. So if anyone wants to know why I say certain things in the book, the back-up information will be here.

Of course, dear readers, that means YOU get stuck with all that data. I will do my best to feed it to you in small and fairly palatable chunks, and to intersperse it with other things. I hope you will stick with me, because this information is important and should be widely known.

Thanks for your patience.

We’re Not Broken

Autism, Myths about Autism, ,

If you haven’t had a chance to read it yet, I highly recommend Eric Garcia’s new Book, We’re Not Broken: Changing the Autism Conversation. As the title suggests, it is devoted to changing the conversation about autism by debunking myths and describing lived experience. Very well researched and written, by a professional (autistic) journalist.

That said, this is kind of bad news for me. I’ve spent the last 8 years writing a book about autism and human rights in the U.S., and Garcia has really scooped me. I’m not giving up on my book–it does some things his doesn’t. But I had hoped to be the first on the market with many of the points he makes. Oh well. His book is great and deserves to make a big impact.

It Wasn’t Really Nice While It Lasted

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Beloved daughter submitted her two-week notice of departure to her boss today. The job looked so promising, but it turned out to be horrible.

Childcare center. So they should care about the kids, right? Wrong–the other teachers just wanted to sit down and let the infants and toddlers fight it out in the middle of the room. Many bite marks and scrapes resulted. When daughter tried to introduce activities and engage the kids, the other teachers became hostile (too much work). The boss was only interested in saving money, so almost nothing you would expect was provided by the center. Kleenex? Paper towels to clean up after the kids? Diaper cream? Batteries for toys? Crayons? Tape? It all had to come out of the pockets of the seriously underpaid teachers.

The boss herself was a real piece of work. She lied to our daughter about what she would be doing, she lied to her about what her hiring bonus would be. (We have the flyer advertising the job–but the amount listed is not what she got.) The boss also lied to parents about what their kids were doing, how their kids were doing, who was teaching them, etc. My favorite lies are the ridiculous ones she told parents about my daughter, who is Chinese by birth. The boss told the Korean parents that my daughter was Korean, the Venezuelan parents that she was Venezuelan, the German parents that she was German! (I could not possibly make this up . . .)

The boss wanted my daughter to do as she was told, even if it meant hurting the kids–and that’s what BD refused to do. So she was criticized for insubordination. She has an auditory processing disorder, and had some trouble hearing the boss if all the kids were screaming. So the boss actually made her repeat back her instructions word for word, like my daughter was some sort of idiot.

The worst, though, was what led up to her resignation. The kids’ parents all loved my daughter, because their kids all loved her. So the boss, in an effort to exert control, reduced her hours with them, and assigned her to diaper changing rather than activities. And when the parents became enraged, the boss blamed my daughter, claiming she had “chosen” not to work with the kids, and was just “in a bad mood.” So there was a huge scene, daughter became overwhelmed, and gave her notice as soon as she got home. (With the full support of both parents, of course!)

And people wonder why autistic unemployment is so high.

If This Isn’t Discrimination, What Is?

Autism, Human Rights, ,

So Tory Ridgeway was awarded a Navy ROTC scholarship to Embry-Riddle Aeronautical University this spring. He was very excited, hoping to be the first military officer in his family.

But then the Embry-Riddle ROTC program discovered he was autistic. This was not something he had kept hidden—he wrote about it in his application to the school. Maybe they just never actually read his application?

In any case, they have just told him the offer was rescinded, because of his “developmental disorder”—in other words, not because he didn’t meet the qualifications, but simply because he was autistic.

Many autistics have served honorably in the military. Some have spent their whole lives in the service. But presumably they either didn’t know they were on the spectrum or were able to “mask” successfully.

It’s time for more autistic service members to “come out of the closet.” And it’s long past time for the Armed Forces to do the right thing for Tory and all the other young people out there who want to serve their country.