Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella even though I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Thursday, April 28, 2016

Q is for Quirky

I originally wrote Q is for Quirky for the A-Z of Neurodiversity at Un-Boxed Brain. I definitely suggest the rest of the series!

I've got a really complicated relationship with the word "Quirky." I think many of us (neurodivergent people) do, and often for reasons that are ... also complicated, and often highly personal.

Thought the first: Quirky is true. I know you should never let the dictionary be your entire thoughts on a word, because there is connotation on top of denotation, and there are cultural (and subcultural) meanings that are not always captured. Dictionaries are written by people, and they generally reinforce whatever norms are already in place. That said, this first thought starts with the dictionary.

Oxford English Dictionary tells me that Quirky means:
Characterized by peculiar or unexpected traits.
Cambridge English Dictionary says:
 Unusual in an attractive or interesting way.
Merriam-Webster gives me:
 Different from the ordinary in a way that causes curiosity or suspicion.
Before questioning what traits are expected vs. unexpected, before questioning what ordinary is and isn't, before questioning how subjective these definitions really are, I have to admit it: By mainstream subjectivity, I'm all these things.

Thought the second: Question everything. Question the assumptions behind those definitions. What is peculiar? What is unexpected? What is expected? What kinds of differences do we think of as attractive or interesting? What kinds of differences lead to curiosity or suspicion? Why are those differences in particular attractive, interesting, curious, or suspicious? And why does one dictionary note only that the traits are atypical, while the other two give (slightly conflicting) information on how others react to those differences?

I don't have full answers to all those questions, by the way. I'd be interested to read what some of you think. (All of us together know more and speculate better than any one of us can alone.)

Thought the third: Just like the term "self-advocate," yes, "quirky" is true, but incomplete. It doesn't tell the whole story. (How often can one word tell the whole story?) Quirky doesn't tell you that I didn't figure out intentional disobediance was an option until a special education aide (not officially there for me, but still) told me so. Quirky doesn't tell you why we rock or flap or generally act as neurodivergent as we are.

Thought the fourth: Quirky is "safe." No one tells me "quiet hands" when I am just quirky (I have to partially quiet hands myself to continue to pass for merely quirky/weird, though.) No one tries to prevent me from going on a study abroad trip when I am just quirky. No administrators make multiple attempts to have me sent home from study abroad when I am just quirky, because "people like that shouldn't be in college."

Sometimes, being seen as purposefully weird is often safer or otherwise "better" than being unintentionally or involuntarily weird. Sometimes, we figure this out without even knowing we've figured it out, and so we get called on our (more) intentional weirdness rather than our (more) directly autistic traits. Sometimes this works. (Sometimes not.) It wasn't the main point, really, but Mel writes about this some in sier BADD post from a while back.

That's why I have typically let my students think I'm "just weird." I mean, weird (quirky) is a true statement, and it's a safer statement. (Isn't there a stereotype that college professors are eccentric? Ever wonder why that is?) If I'm going to spend 2.5 hours per week (either 3 meetings of 50 minutes or 2 meetings of 75 minutes) in front of a classroom, teaching in a primarily spoken format (still a good bit of writing on the board), telling my students that I'm disabled and that my neurodivergence especially affects communication, language, and specifically speech is a risk. Yes, there are disability laws that theoretically protect me, but being open does mean more scrutiny in ways I don't really want. When you're "just quirky," some communication ... quirks are going to be more accepted than they are when you're openly disabled, and it's not about the particular differences. Same person, same communication patterns, different responses based on the label, and that's why quirky can be safer.

Thought the fifth: Quirky is erasure. (There's quite a few kinds of erasure, and this is definitely the point to plug Neurodivergent K's post on erasure from earlier in this series.) Quirky isn't quite assimilation, but it's not not assimilation either. Quirky is when we're implicitly expected to be weird, but not too weird, and not blatantly and explicitly neurodivegent. It's what we get when we make euphemisms and talk about the (shinier) ways that someone is neurodivergent, disabled, without saying those words. It's a bit like "differently abled" that way, though less condescending because there isn't necessarily a specific disability label we're avoiding when we say someone is "quirky." Or maybe there is, and we just don't know which one.

Quirky is erasure when it is avoiding calling me autistic because I'm "not like that" (I'm more like that than you want to admit.) Quirky is erasure and dodging responsibility for properly portraying disability in fiction when you draw the quirks from neurodivergence but refuse to address the neurodivergence behind the eccentricity. Quirky is erasure of other personality traits when the oddity is all your attention is drawn to, both in fiction and in real life. And Quirky is erasure when it's given as the only vocabulary we have to discuss our differences, ignoring our disabilities. (How can you talk or write about an issue when you literally don't have the words to do so? Sometimes I suspect keeping those words from us is done intentionally to keep us from communicating frankly and openly about disability and ableism.)

And if to be safe, we have to erase ourselves, are we really safe at all?

Friday, April 8, 2016

Multicultural Psychology Post on Health (care) Disparities

This was a discussion board post for my Multicultural Psychology class. The topic was culture and health, and the chapter focused pretty heavily on health disparities and health care disparities. We're supposed to write at least 600 words and cite at least 5 research sources outside the textbook per discussion, though I usually (as here) will be making at least one of those citations in my responses to other students. (So, uh, professor? If you do a plagiarism check, yes I am the math TA in your class. Congratulations on finding my blog.)

Chapter 8 discussed culture and health. Part of the chapter is on health (care) disparities. Health disparities are the different rates of being healthy or sick (or having specific conditions) between groups, while health care disparities are the differences in treatment and in access to treatment (Mio, Barker, & Tumambing 2012). These two disparities can not be reasonably separated, as receiving poor care (or no care) can lead people to try to deal with health problems on their own and mistrust doctors, which in turn rather definitively leads to not accessing health care. I know that past healthcare experiences have influenced my decisions to (not) seek care for illness or injury. After I had a doctor explain that my injury (which I had already said was a month prior) could not be a broken foot because for a broken foot to appear as it did on the MRI, the injury would need to be about a month old, my trust definitely decreased. It was, in fact, a broken foot. I suspect he couldn't believe a person would be able to walk on a broken foot for a month. Another doctor taking my inability to assign a number to my pain to mean I wasn't in pain decreased my trust further. The only pain scale I've ever found that I could comprehend is based on behavioral cues, and since I'm fairly sure walking on a broken foot isn't supposed to be 2/10 on any pain scale, I can't exactly use that scale at the doctor's office. There are many who believe that autistic people have a reduced sensitivity to pain or don't feel pain as well, which really doesn't help when I'm trying to seek treatment for issues where pain is a symptom. Fitting that particular stereotype only makes getting medical treatment harder (Allely 2013), and I expect the experience is similar for other groups who are often assumed to feel less pain.

Mio et. al. give multiple examples of people of color receiving care later or receiving less treatment than white people in the chapter, both in personal stories and in statistics (2012). Racism has historically played a role in treatment, and knowledge of this racism plays a role in the decision to seek care or not (Bhopal 1998). Similar forces are in play for people living in poverty, who may choose to delay care due to an inability to pay for it or wait until they are in need of the emergency room because the ER (theoretically) can not turn them away entirely. Interestingly, decreased utilization of healthcare by those of lower socioeconomic status holds even when they have health insurance (Fiscella, Franks, Gold, & Clancy 2000).

In terms of the choice to attempt access to health care or not to make the attempt, historical and current racism play a significant role for many people of color. Medical and scientific racism, such as that which was partially involved in eugenics and in experiments like the Tuskegee syphilis study, led to continuing mistrust of the medical system. In addition, research on health care disparities has often framed the problem as lying within cultural choices of the marginalized group, which does little to create trust (Bhopal 1998).

In connection to these issues, I look back at the concept of imposed etics: “imposition of an outsider's worldview on a different culture” (Mio, Barker, & Tumambing 2012, p. 64). There really are differences in (attempted and successful) health care utilization between marginalized groups and privileged groups. However, in assuming this is because marginalized people culturally don't care about their health or don't believe that modern medicine can be effective at what it claims it can do, researchers are imposing their worldview and ideas of what reasons for action make sense on members of other cultures who have other worldviews! I know that as an Autistic person, I absolutely care about my health, including my mental health. I also totally believe the analysis suggesting that autistic people who are referred to interventions earlier and who received applied behavioral analysis are more likely to achieve the “optimal outcome” of losing their diagnosis (Orinstein et. al. 2014). I just don't care. No amount of evidence that an intervention can “help” me achieve a goal I don't have and rather explicitly reject is going to convince me to pursue that intervention, because it isn't evidence that the intervention can help me reach goals I do have. In fact, the imposed etic where outsiders presume my ideal outcome for mental health care is to stop being autistic, or at least act less autistic, contributes to my reluctance to pursue any mental health care. Even therapy meant for issues comparatively unrelated to autism gets sidetracked by this assumption, and also by assumptions about what it means to be mentally healthy that may not apply given that my natural cognitive styles are, by definition, not standard.

Allely, C. S. (2013). Pain sensitivity and observer perception of pain in individuals with autistic spectrum disorder. The Scientific World Journal, 2013(2013), 1-20.
Bhopal, R. (1998). Spectre of racism in health and health care: lessons from history and the United States. British Medical Journal, 316(7149), 1970-1973.
Fiscella, K., Franks, P., Gold, M. R., & Clancy, C. M. (2000). Inequality in quality: addressing socioeconomic, racial, and ethnic disparities in health care. Jama, 283(19), 2579-2584.
Mio, J. S., Barker, L. A., & Tumambing, J. S. (2012). Multicultural psychology: Understanding Our Diverse Communities (3rd ed.) New York, NY: McGraw-Hill.

Orinstein, A. J., Helt, M., Troyb, E., Tyson, K. E., Barton, M. L., Eigsti, I. M., ... & Fein, D. A. (2014). Intervention for optimal outcome in children and adolescents with a history of autism. Journal of developmental and behavioral pediatrics: JDBP, 35(4), 247-256.

Thursday, April 7, 2016

Theory of Mind Inside Out Note

I am (very slowly, partially because I've got a ton to do and partially because I have trouble with the way most philosophy-type academics write) piecing my way through Daniel Hutto's Folk Psychological Narratives. It's led to my writing thinky thoughts here before.

Well, I just found a paper that I think connects. It did, of course, study just the DMAB folks and is presumably going to be full of pathology language, but it talks about autistic people using more deliberative reasoning where we go through all the steps instead of stuff being instinctive. That paper is here: Reasoning on the Autism Spectrum: A Dual Process Theory Account.

Since Hutto's argument for why he thinks people don't typically reason out why other people acted as they did/attempt to explicitly figure out the mental states of others is that it'd involve more mental effort, and since autistic people tend to describe spending a lot of energy trying to understand the actions of others, I think we get a lot more practice at deliberative reasoning out of social interaction, which is then more tiring, but also since we have more practice at it we might use it more in other domains. 

Wednesday, April 6, 2016

#NaPoWriMo April 4-6

The poeming continues!

April 4

Mathematically and neurodivergently musing
Order preserving maps
If you could compare the input, you can compare the output.
Follow the charted paths in the order they are given to you.
Maps depict and preserve order (unless they don't.)
Is it X that marks the spot?
What is the spot?
And since we're talking inputs and outputs:
What's in the box?

April 5

Month of awareness,
Month of acceptance,
Month of hullabaloo,
Look at the moon and wonder:
How many messages are attached to the cycle of one great rock about another?
How many messages are we missing?

April 6

Conflations, confusions.
"Don't you agree that X is needed?"
The ends will not justify all means.
Any end can be reached by multiple means.
Conflate, conflate, conflate.
"She'll never get a job if she can't learn to stop that."
How old is this kid again?
Does there need to be a power struggle over it now?
Are you sure?
Would that power struggle have taught you the skill?
Are you sure?

Sunday, April 3, 2016

April 1-3 #NaPoWriMo

Once again, April rolls around. That means National Poetry Writing Month, and it means Autism Hullabaloo Month. I have decided that is the name now because awareness months are generally for things that are bad and that we want to get rid of, and because acceptance isn't enough/is kind of getting appropriated, and because even the folks doing things I like are making lots of words and pictures and posts. Good ones, and I wouldn't have them stop if I could, but it does, in fact, add to the total hullabaloo. Which is sort of the point, adding good stuff to this mix so people can find such if they want it.

So here's my poems for April 1-3.

April 1:

Sidhe Fool, pray do tell,
How do you always jest?
How are your tricks always true?
Trickster, not liar,
Will you be my April Fool?

April 2:

Always remember: Icarus flew too close to the sun.
The higher you fly, the further you have to fall.
But when did heroes sleep safe?
And when did we forget the other word of warning:
Do not fly too low, too close to the sea.
We have forgotten, and so we remain.
Aim low, aim low, don't look up to the sky.
Aim low, aim low, locked still (unsafe) until we die.

April 3:

Questioning answers,
and questioning questions.
Theory of whose mind?
Awareness of what about autism?
Awareness for whom?
Awareness of whom?
Don't believe everything you read on the internet.
Are you sure you don't want me to believe what you say on the internet?
(Remember that your journal is online now!)