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. 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

Monday, April 27, 2015

When I Am Using Text To Speech

I've written a bit about my use of text to speech software as a form of augmentative and alternative communication. On my laptop, I have eSpeak which does English pretty well and Chinese poorly (but extant!) On my iPad, I have Proloquo4Text. I really like having the ability to type and pull saved phrases, because there are phrases I use frequently and there are phrases that I might not remember I have the option of using unless I see them. (Setting boundaries of No, I can't/won't do the thing or asking for help are the parts where I might not remember I can do that.)

There's some articles around on how to do communication with AAC users, which is cool and a nice starting point, but folks are going to have different preferences related to how they use their AAC and how others interact with them. Thus, I'm tossing my personal set out there, in no particular order.

  1. When I am typing, this is not always equivalent to "gathering thoughts," but it's usually close. If you were talking before I started, go ahead and finish. This isn't me starting to talk yet. Just don't do "I see that Alyssa has started typing so I will now start talking" and we're probably fine.
  2. As a corollary, since we're not treating my starting to type as the same thing as me talking, we're all the way not treating it like that. If I start typing before you finish talking, This is not me interrupting you. It's not me interrupting you until I hit "speak" on whatever I wrote while you're still talking.
  3. There might be times when I interrupt. Just like I might when I'm speaking with my mouth. It happens! Especially if there's an emergency, but also because in natural conversation people do sometimes interrupt each other.
  4. Once I hit speak, if you start talking before the software finishes, you are interrupting me. Are there times in normal conversation where that could happen and be OK? Sure, and I'll judge it the same whether I'm using my mouth or typing. But let's not pretend that it's not happening. (The existence of a replay button on Proloquo4Text means I may less annoyed by an interruption than if I were speaking, unless I have reason to believe you're only interrupting because I'm using AAC, in which case I probably think you're being terrible.)
  5. If you wouldn't finish my sentences when I'm speaking, don't try when I'm typing.
  6. Unless I am turning my device around to show you what's on the screen and you're moving it to see it better (I don't always know what angle is best for showing someone) don't touch my device. It's doing the job of my mouth/vocal cords/etc.
  7. Talk to me, not around me.
Long story short, there's some practical questions like "When can someone else touch the device?" and "What does "starts typing" count like?" but we should be looking at a fairly typical conversation. 

Sunday, April 26, 2015

Doing What Works- Academia Edition

Making notecards for research papers seems like a pretty accepted thing. When they taught us how to do research papers in high school, they made us do them (and handwritten, too!) When my friend, a history major, was writing papers for college, he made them. His were handwritten. Quite a few of my friends make them too.

As soon as I wasn't required to anymore, I stopped making physical note cards. It's not because I don't think they're a good idea. I think having note cards is great. The problem is making them. My handwriting is messy enough that handwritten note cards don't actually do me much good, and writing starts to hurt fairly quickly so I'm not inclined to make cards, especially when they won't help much due to the messy handwriting issue.

Instead, I've been typing my notes. This is useful because it's hard to lose a digital copy of my notes. It's also useful because I can read things I typed later. It's easier than handwriting, because typing doesn't make my hands start to hurt. It lets me post my notes publicly, which I do in the hopes that they are useful to someone else. (I've got friends who do academic stuff, and if my notes about a source help them decide if reading it is worth it or not, or if having my notes lets them spend less time going through the source once they have it, this is great! I like it when academics post things publicly and it makes other people's lives easier.)

Because technology exists and can do cool stuff, and because I know printed note card size flash cards exist, I recently looked around for ways to print directly onto index cards. Lo and behold, it can be done! Apparently, as long as you make your paper size right in your document and in the print step, most printers can print to index cards, either 3"x5" or 4"x6".

Now I can get the benefits of both digital notes and legible notecards! It's a bit of a process, but way faster than trying to read my handwriting.

  1. Take notes on my laptop, typed, regular letter paper sized document.
  2. Save as "Notes" for the source.
  3. Save again, as "Note cards" for the source.
  4. Change the page size to 4"x6" (big index cards) and the margins to 0.5"
  5. Copy the citation for the source to my clipboard.
  6. After each note that I want a note card for, paste the citation and then insert a page break. On my copy of Open Office, ctrl+enter does a page break. (I don't need a physical card for "Also read this source the author cited")
  7. Load up the index cards in the printer and print!
  8. Sort the cards by project they relate to. If a card relates to multiple projects, I can print multiple copies of that page so that a card for it goes in every project it relates to.
I do have a decent bit of overlap between projects, too. My projects (in varying levels of activity) are below, and purple lines connect projects that currently have at least one shared note card.
Image description: Project titles in boxes connected by lines representing shared note cards between the projects. The listen projects, left to right and then top to bottom, are 

  1. "Neurodivergent Philosophy of Science," 
  2. "Rethinking Engineering Design and Disability," 
  3. "Cognitive Interpreting Application," 
  4. "Theory of Mind Inside Out,"
  5.  "Disability Studies for Engineers Course Creation," 
  6. "Cognitively Accessible Language (Write so the folks you write about can understand)", 
  7. "Erasure of Queer Autistic People," 
  8. "Queer Because Neurodivergent is STILL QUEER."
Using the numbers as shorthand for the projects, the following pairs are connected:
1 and 2, 1 and 4, 1 and 5, 2 and 3, 2 and 5, 3 and 6, 4 and 6, 4 and 7, 4 and 8, 5 and 6, 7 and 8.

Tuesday, April 21, 2015

"The Myth of Clinical Judgment" notes

The next episode of Alyssa reads a thing and shares notes is for "The myth of clinical judgment" in the Journal of Social Issues. Citation:
Biklen, Douglas. "The myth of clinical judgment." Journal of Social Issues 44.1 (1988): 127-140.

Biklen notes that people with have historically faced exclusion from education, social rejection, limited physical access to society, and segregation within institutions, and that typically people facing such treatment would be considered a marginalized minority.
“Yet the more common tendency has been to view people with disabilities as (a) victimized by a disabling condition and (b) in need of treatment-- not of rights.” (128)

Officially, the appropriateness of educational and residential treatment, placement, and supports for people with disabilities is considered a matter for professional (clinical) judgement.

“The more severe the disability, the greater the likelihood that the person will be regarded more as a “patient” than as an object of discrimination. Indeed, identification as a patient would seem to preclude identification or status as an oppressed minority.” (128)
Note (from me, not Biklen) also that this still presumes a way of judging a spectrum of severity, from less severe to more severe. However, any such judgment will be socially constructed and is based against what society expects people to be able to do and how society expects people to look, move, and act.

Professions such as special education, psychology, and rehabilitation for people with disability work through individual assessment, diagnosis, and placement. However, the available options for professionals to place people with disabilities in need to be considered.

Biklen notes that the US government policy has been to avoid placement of people with disabilities in separate classes or schools without demonstration of benefits from the segregation and evidence that integration is not possible, not by administrative concerns such as equipment, specialists, or specialized programs.

“Educators expectations for student performance appear greater for students involved in useful and age-appropriate (and more integrated) rather than nonfunctional (and potentially more segregated) activities.” (132)
Oh hi, presumption of competence showing up more when we're not segregated.

In AY 1982-3, 68% of all children with disabilities were primarily educated in regular classrooms, 25% in separate classes within the regular education building, and 7% in separate schools or other environments (home/hospital) (U.S. Department of Education, 1985, p. 36.)
However, classifying by type of disability, we find that learning disabilities and speech disabilities are typically included while all other groups are more likely to be segregated.

State by state variation in segregation for students labeled with intellectual or emotional disabilities, as well as with multiple disabilities has been extremely wide. Because of the reality that state of residence has an extremely large effect on placement in a mainstream or segregated school, Biklen questions the assumption that placement is done by clinical judgment, despite the claim of clinical judgment. State funding for private school or institutional placement is a strong indicator of actual placement, as do admissions tests or lack thereof.

It seems that people with more severe disabilities get even greater benefit from integration and access to the community than people whose disabilities are considered more “mild.” At least, in terms of how professionals define improvement and benefit, but I'll take it because it favors “stop segregating people and claiming it's for their own good, dagnabbit.”

When examining patterns of residential placements and institution closure, factors such as Medicaid fund use, court oversight, bureaucratic concerns, jurisdictional disputes, public opinion towards people with disabilities, federal funding, availability of alternative placements, pressure to convert institutions for people with disabilities into prisons, and pressure from advocacy groups were found to have a greater effect than professional judgments.

Despite the professional authority supposedly in charge of many life aspects for people with disabilities, including who lives in group homes, who lives in instutions, and who is supported living in the community, the influence of other forces tends to have more importance than said medical/professional judgments. However, the primary factors still aren't the choices of the people with disabilities themselves.

“The solution to the problem of clinical judgement being overwhelmed by nonclinical forces is not more, better, and therefore more influential clinical judgement. Rather, the problem is in the current model of disability services, which treats questions that are both political and professional-- such as where and how people shall live or be educated-- as if they were purely professional ones.” (137)

“The conditions faced by people with disabilities are those that plague other minorities: social isolation, insufficient and unequal treatment, economic dependency, high unemployment, poor housing, and an unusually high rate of instutionalization. It serves the interests of neither professionals nor their clients-- indeed, it perpetuates a myth-- to ignore people's need for political and economic changes while offering them only clinical treatment. This seems particularly wrong and harmful when the treatment itself becomes an extension of political and economic disenfranchisement. Put another way, people with disabilities are more likely to achieve increased self-determination, real choice, and power if they cease being defined as clients whose future rests in the hands of professionals, and are instead recognized as a minority group.” (137.)

Monday, April 13, 2015

Having Bad Days

For some reason, I have trouble with the concept that I am allowed to have bad days, that I am allowed to mess up, that I'm allowed, essentially, to be human. It's a problem. Neurodivergent K talks about it too, and yes, I did, in fact, manage to internalize this really toxic message while still being passed off as "just" gifted.

With my getting sick this weekend, I'm seeing (at least for the moment) just how illogical and potentially bad this is. Warning for potentially TMI discussions of sickness beyond this point.

Sunday, April 12, 2015

Some Updates

I've been keeping up with the poems for National Poetry Writing Month, but for a variety of reasons not all of them are going to make it to the blog, at least not immediately.

Some of the ones about communication (plus some about communication that are already here) are being tentatively saved for... some sort of longer writing piece or series of them about communication and how it interacts with a lot of stuff for me.

Some of the ones about neurodivergence are being tentatively saved for submission to places like Barking Sycamores. A lot of literary places ask that pieces be either previously unpublished or, if posted on a blog, temporarily not on the blog for some period of time after they post it, so I'm waiting while I figure out which ones will go there.

Some of them were handwritten and aren't actually typed yet.

I found out that a friend of mine is doing a fieldwork project in his disability studies program that I really, really want to cite once it's done.

I got sick. (Sniffle, cough, whine.) It made me miss a tournament (more whining.)

I'm presenting at my university's graduate conference about disability and engineering stuff next weekend and need to write my paper for it. I can totally do this- I just need to sit down and do it. While I could wing this talk, I don't think I should.

I got nominated for a Diversity Award at my university and found out that I'm getting it, which is also cool. The stuff that the head of the multicultural center seemed to be focused on (how I'm "changing the culture in the math department") isn't what I'm really focused on, so I wasn't sure. The reason I'm not as focused on the math department is that while I'm sure there are changes in the department culture happening because of me... I don't feel like I'm having to do that much of the legwork for those changes. I'm fairly sure that I'm the first AAC user, full or part time, that most of the department has interacted with, but people have handled it great. They wait for me to type what I need to type, keep quiet while the iPad talks, read what I wrote when I'm doing it with handwriting, all that good stuff.

No one took issue with the fact that I'd start typing sometimes while they were still talking (since I don't have speak as I type on, I'd consider this equivalent to thinking about an oral response while they're still speaking, approximately.) Which the state director for Best Buddies did take issue with. (I don't actually like Best Buddies, even a little, and am a touch embarrassed to admit my affiliation because my experience has been so... helpy helpers who help and don't trust people with disabilities to know what we need, but I have been with my school's chapter a bit this year trying to get it so that a college student with an intellectual or developmental disability can register as a college buddy without having to lie about their disability status. I plan to leave as soon as this is fixed, though. )

Sunday, April 5, 2015


Now that they (don't) have our attention,
Fight, flight, freeze has the reins.
Thump, thump, thump goes my heart.
Couldn't they have just punched me in the face?

But no.
Punching is known to be violent.
Apparently not.

Computer games, commercials, supposedly provide them.
Warnings, warnings, warnings.
Even when they don't flash.
Can I get a notice before you actually strobe?

(Sooo one of the capstone groups thought strobe lights were a great way to get our attention before their presentation. And, in fact, it takes my heart rate longer to get back to baseline from that than from actually getting hit in the face. Not having epilepsy, my reaction is comparatively mild- strobes are not at risk of killing me- but seriously people need to not use strobes in class presentations, especially without warning. What if there was a classmate who did have epilepsy instead of "just" sensory processing issues?)

Saturday, April 4, 2015

Be Brave (Revolution)

Say what you wanna say and let the words fall out.
They say war is necessary,
But we say war is child abuse.
Find the new ways that we must be king,
Instead of leading the young to our suffering.
I wanna see you be brave.

Sign what you wanna sign and let the words fall out.
Don't let them pretend they're saving you!
Don't bend, don't break, baby, don't back down.
There's no one here to save.
I wanna see you be brave.

Write what you wanna write and let the words fall out.
Start a revolution at the break of day.
So we're calling all the crows, they're coming in slow
It's gonna be a showdown, said the rebel to the revolutionary follow me,
We tell the court, you tell the king,
That we ain't listening to you no more!
I wanna see you be brave.

Type what you wanna type and let the words fall out.
You could cut ties with all the lies you've been living in.
It's time to try defying gravity.
Unlimited, together we're unlimited
As someone told me lately,
Everyone deserves the chance to fly.
I wanna see you be brave.

Another echolalic poem. Lyrics (sometimes slightly modified) from:
Brave- Sara Bareilles
People of the Sun- PONS
King of Anything- Sara Bareilles
White Flag Warrior- Flobots
It's My Life-Bon Jovi
Jumper- Third Eye Blind
Calling all Crows- State Radio
Knights of Bostonia- State Radio

Friday, April 3, 2015

On #WAAD I...

Check the calendar.
It's really today.
Can it not? Can we not?
One year, one day, someday.
But no. Blue is here.

I sigh, and don my armor orange.
April 2 is still a Thursday, still a long day.
Flap my way to class,
Rock in my chair,
Look a foot to my teacher's left.
No hiding today of all days.
No letting people think autism is only children.

In class, we are asked of stresses and strains.
(I'm an engineering student, and a math student.)
I flap for words.
I speak.
I flap for words.
Fewer words come.
I flap for words-No words.
They're gone.
I flap for words-No words.
Dare I type instead?

Don my armor orange.
No hiding today of all days.
Out the iPad comes, to speak.
Autism doesn't speak unless autistic people are speaking.

Thursday, April 2, 2015

The Worst Nightmare You Don't Know

I am your worst, I am your worst nightmare,
You, you will suck, the life out of me.
You're trying to save me, stop holding your breath.
I'm just a problem that doesn't want to be solved.
Tired of being what you want me to be,
I am your worst, I am your worst nightmare,
Stab me with your steely knives, but you just can't kill the beast!

I'm a failure to you, a failure to you, yes I'm a failure to you.
Can it be, I'm not meant to play this part?
Oh, my soul needs to be free
I'm through with playing by the rules of someone else's game.
Bury it, I won't let you bury it.
I won't let you murder it, I won't let you smother it.
All I want to do is be more like me and be less like you.

I am your worst, I am your worst nightmare,
You don't know what it's like to be like me.
Get along with the voices inside of my head!
I'm not drowning; there's no one here to save.
I'm through accepting limits cause someone says they're so.
The flaw you're looking for does not exist,
It's just a figment of the higher man's tongue.
All I want to do is be more like me and be less like you.
I am your worst, I am your worst nightmare,

This poem is echolalic, pulling from song lyrics. I used lyrics from:
Novocaine- Fall Out Boy
Monster- Eminem/Rhianna
King of Anything- Sara Berellis
Defying Gravity-Wicked
Hotel California- The Eagles
Bats in the Belfry- Dispatch
Strangers Fate- High Tide (now The Saturday Nights)
Welcome to My Life- Simple Plan
People of the Sun- PONS (now The Saturday Nights)
Numb-Linkin Park
Open Up- Dispatch
Time is Running Out-Muse

I may attempt to record this at some point, we'll see.

In this poem, "I" is me/autism/autistic me, and "you" would be the folks who for some reason think autism is the scariest thing ever, just to be clear.

Wednesday, April 1, 2015

Autism... something Month

Not awareness. Awareness is scary because people who think they're "aware" of autism are mostly folks who are working off a whole lot of fear-mongering and Not Like My Child and all kinds of yucky stuff.

Not sure about acceptance, because I'm not sure that's enough. Acceptance and tolerance often feel similar, with a "well, fine, we'll deal with you as you are as long as you're close enough to normal" vibe to them. And I can't help but remember that acceptance is listed as one of the stages of grief. I think Autism Acceptance Month has actually been used that way, in a co-optation. The people I like and trust and work with on this sort of thing go with Autism Acceptance Month, and I won't argue with them over it while they're actually doing good stuff. (Language is, in fact, not the most important thing to me, even while words mean things. Language is imprecise sometimes and connotations make things tricky and that's OK. Language changes, too.)

There's already an Autistic Pride day, and it's in June.

Realistically, I'm just going to stick with Autism Acceptance for the time being. I'm also going to do stuff. National Poetry Writing Month is April, and I'll be writing a poem a day for the month. I'll be putting them up in chunks again so that I can post other things as well, but that's a thing that's happening. I'm considering putting some echolalic poetry in again this year. 

And I'm making my short stories with autistic characters in them free for 5 days apiece in April. First up is "The Beginning of Her Hell", which is free for April 1-5. Warnings for ableism and threats of institutionalization and violence in this story. (Ok, so as of right now there are two such short stories, but I'm hoping to get one more up this month.)
Image of the cover for "The Beginning of Her Hell" by Alyssa Hillary. A pair of blue eyes stares out over a typewriter.