Friday, September 23, 2016

Up-goer 5

XKCD decided to explain space travel using only the ten hundred most commonly used words. Here's a diagram here, and there's also a video.
They also have a text editor, where you can try to explain something using only the ten hundred most common words too.

Here's my explanation of learning differences:

We all learn. But how we learn is sometimes different. Some people have trouble learning to read or write or use numbers, even though they can learn other things easily. Some people are slower to learn everything. And some people have trouble learning to speak, or use their bodies, or understand what others say. Some people even have trouble learning to see or hear. They can see and hear, but what they see and hear doesn't make sense to them. Some people also have trouble learning to understand how other people feel and what they are thinking. And some people have trouble learning how to take care of themselves, or keep their house clean. Some people have trouble keeping track of time, and forget things they need to do.

When someone has trouble learning something, they might need more time to learn it, or they might need to learn it a different way. Sometimes they never learn it, so they have to find a way to do things without using that thing. Someone who can't read might need a computer to read for them, or someone who can't keep track of time might need their phone to help. Someone who can't learn how to walk might use a chair that rolls around. Someone who has trouble learning to talk might use a computer that talks for them or they might use hand signs. You can't always tell if someone who has trouble learning something will be able to learn it, so some people start out doing things a different way and then learn how to do them more easily.  

Often people who have trouble learning one thing can be very good at learning something else. Someone might be very good at reading but have trouble with numbers, or have trouble understanding people but know a lot about a favorite thing. Some of the people who have done the most amazing things have had trouble learning.

This might be a nice tool to write text designed for an AAC user to say. I've been thinking of writing some core vocabulary stories, but I find it hard to write if I'm constantly checking a word list to avoid fringe words. I just wish I could adjust it to different vocabulary sizes.

[edit: Just found this, which color-codes words by frequency instead of just banning all words below a certain frequency.]

Saturday, September 10, 2016

21 Days of AAC: Week 3

See week 1 here and week 2 here.

This ended up taking longer than 21 days, but oh well. I'm glad I did it, and I'm planning to do it again several months from now. It was a nice mix of challenges, some I found simple and some not.

I also feel a mix of relieved and let down, now that it's over. It was a kick in the butt to make me try some things I wanted to try but felt scared to, but university is starting and I'm kind of glad I don't have to worry about this stuff while taking my classes.

Task 15 - Describe 3 Beautiful Things
I've had trouble deciding what to describe and I'm also feeling very sick and somewhat depressed, so it's hard to get the energy.
First I said: “My old cat is beautiful. She is black, white and orange with yellow-green eyes. Her fur is thick and soft.”
Two days later I said: “I like the amazing song. It makes me feel good about myself because those children are like me, and the song says they are amazing. It shows autistic kids acting autistic and says they are amazing. It recognizes that stimming can be a good way to play. It also shows kids who are upset, and says it's okay to be upset sometimes instead of seeing this as a continuing thing about autism.”
And later that day, about one of my stim toys, I said: “It is a sparkly shiny silver colored necklace. It is too small to wear but I don't care. The thing at the end has sparkly pieces on a white thing and the back is smooth shiny silver. I like the way it looks and how it feels when I play with it.” (Added 'sparkly’, 'shiny’, 'lace’ and 'smooth’.)

Task 16 - Tell someone my plans for the day
I told my dad “Father I want to buy the carrier for this” (the AAC device) and then added “I also want to sign up for asl”. (The deadline to sign up for the fall ASL class in my area is coming up very soon.)

Task 17 - Summarize an article about an unfamiliar topic
Not sure if this counts as unfamiliar, but I haven't been focusing on it - the Syrian refugee crisis. I read an article by a humanitarian organization and said “I read about people who are in danger because of a war. They have to run away and find a new place to live. The story focused on the children in the war. Many of them are orphans. Many are getting hurt or killed. Some are being forced to have sex with adults or they are being forced to fight in the war. Many are getting sick because they are living in camps with too many people and no way to keep clean. It is a very sad situation but the people who wrote about it are trying to help.”

Task 18 - Say something that I wish I'd said to someone
“I knew you were there, I just wasn't expecting you to stop in the doorway.” I wish I'd said that to an old lady who started chewing me out for looking at my phone while walking. She'd stopped abruptly right in front of me and I just barely stopped in time, and then she said something snarky about me looking at my phone and not paying attention. Really, I'd have had just as much trouble stopping in time if I wasn't looking at my phone, because I didn't expect her to stop in front of me.

Task 19 - Give three compliments
Told my mother “you are a wonderful mom”. She has just been told that she is not getting renewed at her job, and she's taking it hard, so we're trying to comfort her. Then I checked and I have “compliment” under “tell”. I then told my brother, who was helping me comfort Mom, “you are a caring son [his name typed out].” Lastly, that evening, I said “I am lucky to have a wonderful brother”.

Task 20 - repeat of task 14
I got tracking unlocked for my AAC device, so I repeated that task. I had 'the’, 'a’ and 'to’, and chose the synonyms 'enough’, 'one’ and 'in’.
I said “I am good enough”.

Next day, I said: “the dog is in the house” and “one dog and one human go for a walk” (added 'human’). At lunch I said “I want in”, “I have orange drink in my bottle”, “I ate enough food”, “I had one piece of apple pie” and “Mom, have you had enough to eat?”.

Friday, September 02, 2016

Hypocritical Education About Disabilities

I've recently been trying to get some good disability-related children's books, because I'm reading children's books to practice AAC and I want my future child to have good books showing diverse people. Unfortunately, two of the books I've found so far (both with rave reviews) show a troubling disconnect between the intended message and what the author seems to believe.

The clearest example is The Autism Acceptance Book by Ellen SabinThis book is aimed at NT kids who know autistic kids - the subtitle is "being a friend to someone with autism". Overall, most of the book's message is pretty good, all about trying to take the perspective of someone on the autism spectrum, and kid-friendly explanations of autistic traits, with discussion of strengths and not too much pity.

I've noticed two problems, though. First, several times it suggests raising money for autism research as a nice thing you can do for your autistic friend, completely ignoring the ethical issues many autistic people have with a lot of autism research being funded by nonprofits. The inclusion of that suggestion is also strange given the overall positive portrayal of autism - would Ellen Sabin have suggested donations to research as a way to support a friend from a minority ethnic group, or a friend who was LGTB or something? While researching diversity is certainly interesting, framing it as something to do to benefit a minority group member implies that they need scientific help, such as a cure. This is incompatible with the "it's okay to be different" message that the book is generally conveying.

The hypocrisy is revealed in full detail by her "note to adults", which stands in jarring contrast to the acceptance message her book tries to teach children. It opens with this sentence:

Autism is a growing problem that afflicts thousands of children every year. 
Right. So now we see how Ellen Sabin truly sees us. Not as people who are different, with our own strengths and difficulties, and worthy of acceptance as the unique people we are. No, we're a "growing problem", "afflicted" by our autism. (Note: this book is aimed at elementary school kids, not preschoolers. I can assure you that if you give a bunch of elementary school kids a book with a note for adults, at least some of them will read it.)

The other book's hypocrisy is more subtle to an adult reader, but it's more integral to the book. This book is How Katie Got a Voice (And a Cool New Nickname) by Patricia L Mervin.

Whereas the first book is a nonfiction book, the second is a fiction book designed to be educational. The story is set in a school where everyone is given quirky nicknames based on what makes them unique. But the new student, Katie, is a girl with a physical disability and complex communication needs, and the perspective character - the one who assigns nicknames - has no idea what to nickname her. The implication is that he wants to nickname her based on her personality, not her disability, but her disability makes it hard for her to communicate her personality.

But good news! Katie is getting an AAC device! The perspective character reports that he didn't know this at the time, but Katie and her speech-language pathologist were working on a switch access system in her therapy sessions. Then comes the big unveiling, and the big disappointment for anyone hoping Katie might actually get some characterization.

Katie doesn't really do anything unique with her AAC device, just mimics everyone else's "thing". Still, she could at least have gotten the nickname CopyKate, or something. Instead, when she asks for her nickname, what does she get? CommuniKate! They may as well have nicknamed her Wheelchair, if they were going to base her nickname on her assistive equipment!

The book ends with a bunch of tips for how to relate to a disabled person, including the suggestion to "see the person, not the disability". Personally, I think you should see the person and the disability, myself, but this book does neither of those. Katie's characterization and even her nickname are entirely related to her disability, with no hint of anything to differentiate her from any other switch-AAC user.

Not like Melody from Out of my Mind, who is a linguistically gifted kid with a competitive streak. (And also uses a direct-access AAC device.) Or Brynn from Dancing Daisies, who from the tiny bit I've seen so far is clearly a distinct person of her own. (I can't imagine Melody putting up with people speaking for her as much as Brynn does in the starting bit, even if she was a switch-access user.) Granted, it's easier to characterize someone in a chapter book than a kid's picture book, but this honestly smacks of not even trying. (CommuniKate? Seriously? I'm still flabbergasted that she thought this was a cool nickname for an AAC user!)

I think this is reflective of a larger issue. In the parent survey I did a long time ago, part of the results lost with my old website was a pair of qualitative questions asking the parents "how do you view autism?" and "how do you want your child to view autism?" The most striking result was that most parents, especially those with more negative views of autism, wanted their child to view autism more positively than they themselves did.

The problem is that it doesn't work that way. I also asked parents "how do you think your child actually sees autism?" With the exception of the parents who had no idea or didn't think their child knew they were autistic, most parents felt their child's view of autism was closer to their view of autism than to the view they wanted their child to have. Which is consistent with children's socialization in general - kids mostly mimic what we practice, not what we preach.

So if you want disabled kids and their non-disabled peers to see disability positively, then you have to start with yourself. You need to practice what you preach. Otherwise you're just a hypocrite, and sooner or later, the kids will realize you don't mean what you're saying. A racist can't teach tolerance of ethnic diversity to children, and an ableist can't teach tolerance of disability.

Saturday, August 27, 2016

21 Days of AAC: Week 2

View week 1 here, and week 3 here.

I haven't done as well this week as the first week, mostly because our whole family, myself included, have come down with some sort of flu. In addition, one task had to be adapted and proved so difficult that I split it up into two tasks, because I don't have good data tracking for my AAC app. (Data tracking is available for Cough Drop, but you have to not be using it for free to access it, and their site was having issues that made me unable to pay them.)

Task 11 - Order at a restaurant with AAC
This one had several challenges for me. First, an acquaintance of my Mom's was having supper with us, and she commented several times that I was being weird. Secondly, I was overloaded by sounds from the bar, and third, in my overload, I forgot and spoke about wanting a quiet area. But when it came time to order, the waitress didn't bat an eye when I held out my device and pressed the sentence bar to ask for “chocolate milk and garlic shrimp skewers”. She also reacted very nicely when I thanked her and said it was good. Apart from repeating my words to check understanding (it was noisy and my speaker isn't very strong) her behavior wasn't noticeably different from if I'd spoken with my voice. I insisted on my parents giving her a good tip!

Task 12 - Express a goal for the future with AAC
Used AAC to tell Mom about my decision to start the Positive Neurodiversity blog.

Task 13 - Ask someone something about themselves that you don't know using AAC
Dad was talking about a David & Goliath TV show that Mom hates because Goliath (who is a dog) guilt-trips David. He speculated that Goliath might be reminding him of his Mom. I asked “when you were a child did your Mom talk about something you haven't done to make you feel bad?” He said no, but she had a litany of things his father had promised to do and never done, going years back. For example, he said he'd build her a bomb shelter and never got around to it. She'd bring out this list whenever she was upset with him.

Task 14a - Figure out three most commonly used words
My device doesn't have tracking, so I was struggling with this. I finally used the quotes in this record to count the most commonly used words in this past week. The top 5 were to, I, the, horse and work. I couldn't find synonyms for I or the, so I came up with the list toward, steed and task.

Task 14b - Use each synonym three times during the day
First, I said “after this can we go towards the 7-11” to my Dad, and then to myself I said “I ride my trusty steed” (added trust, said trust+e for trusty), and then “I am doing the AAC task for today”. A little later I jokingly asked Dad “do you like your machine steed” (car), which he didn't understand at all.
Just after lunch my brother was playing World of Warcraft and I asked him “what steed are you using?” He wasn't using a steed (I'd thought I heard him mount up, but I hadn't) but he did have a cool new hunter pet.
Randomly said “I am working toward a better world”. Then, while watching Voyager, I commented about a character “he must do this task by himself”. Just realized now that I forgot to the third phrase with 'task' in it!

The task that had the most practical difficulties was task 14, which I split into two pieces, and still forgot a little bit of it! However, the one that represented the biggest challenge to my AAC use was ordering at a restaurant. I'm still very much uncomfortable with using AAC to talk to strangers, even though I've considered having a wordless week at some point in the future to raise awareness.
But despite my personal anxiety, the restaurant meal went surprisingly well. The waitress didn't seem to even notice that I'd spoken to her once and used AAC the rest of the time. There are of course people who actually need AAC who could've acted that way, too - in my recent survey, I found 25% of adult autistics reported losing expressive language, and the noise level in that restaurant would be a plausible trigger.
However, I'm guessing many people in the general public don't understand that, any more than they understand part-time wheelchair use. I wonder if she just didn't notice, or if she knows more about part-time AAC users than most people do, or if she guessed that I didn't really need AAC but just didn't care. Whatever she thought, her reaction was much better than the lady in task #1 - she didn't change her behavior at all when talking to me as opposed to everyone else. Really the only thing I noticed that seemed different about her reaction to me was that she repeated back my order and not the others, and that was a purely practical reaction to my quiet speakers in a noisy environment. In every other way, she treated me like a typical customer.

Sunday, August 21, 2016

Positive Neurodiversity Compendium

I decided to start another blog, Positive Neurodiversity Compendium. This blog will be reserved as a safe space for neuroatypical people who just need to read something positive about people like them, without any mention of ableism.

As an autistic person, sometimes I feel like I'm drowning in the negativity around neurodevelopmental differences. Even most neurodiversity sites aren't a good thing for me in that mood, because rebutting ableism, while important, just reminds me of the ableism that is out there. This blog is intended as a safe space for people with neurodevelopmental differences who just need to read some positive stuff about being different.

I will still use this blog for the usual style of posts here, but when I write or come across something really positive and comforting, I'll put it there. Hopefully eventually I'll have a big long list of posts, so if you're like me, you can go delving into the archives to find some comforting stuff you haven't read yet.

I'm also intending this blog partly as something for kids to read. While I won't go out of my way to make it kid-friendly, it'll probably turn out as a good site to find stuff for a neuroatypical kid to boost their self-esteem.

Hopefully this will also be helpful to me, encouraging me to take the time to look for the stuff that makes me feel good about myself and the world.

Friday, August 19, 2016

21 Days of AAC - Week 1

This is part 1 of a series. Part 2 is available here, and part 3 here.

Recently, Dana Nieder at Uncommon Sense posted a 21 days of AAC modelling challenge. (Actually a reboot of a challenge she's done before.) Then the Speak for Yourself blog posted a version of the challenge for adult AAC users to try for themselves.
I don't really fit into either box. I'm an adult who doesn't actually need AAC, and I don't have an AAC user in my life. I'm learning AAC so I can model for someone who doesn't actually exist yet - I want my future child to be exposed to AAC from birth. If xe has no speech issues, it'll be useful for awhile when xe is still too young to communicate easily. If xe inherits autism from me, though, xe could have trouble communicating through speech, and I want xim to learn AAC before I can tell if xe needs it. I also think AAC could help with learning to read, based on Maya's reading lessons, and I've been pondering throwing in AAC modelling as an adjunct to learning to read (especially sight words).
But anyway, I liked the structure of the adult AAC challenge, and decided to do it myself. I'll be posting updates once a week for my progress on this.
Task 1 - Use AAC in a place you've never used it before.
Used AAC for first time to talk to stranger, no speech. Tried to purchase a snack at a store I'd never been to, but my card didn't work so I gave up. Fairly minor use, but still a challenge. Only said one thing: "I would like to buy this" and managed the rest nonverbally because I felt too embarrassed to search for words in front of her. I think she thought I was Deaf because she enunciated very clearly and waited for me to look at her before speaking. Also seemed to give more detailed instructions on how to use ATM device than she would have if I was speaking. My heart was pounding, I felt scared and excited, and had a weird feeling like my words were stuck in my throat. I also felt like I was channelling Emmett from Switched at Birth, the way he acts with hearing people who can't sign.
Task 2 - Listen to music and say the first few words with my AAC device
This one was fairly easy. My auditory processing issues were a bigger hindrance than my AAC skills to this. I didn't really notice before how much I miss lyrics if I'm not reading them or listening to the same song over and over. I added two words - ignore and spit.
Task 3 - Use AAC to talk to someone who has never seen me use my device
I was wracking my brain to think of what to do, in part because I basically already did this for task 1. As I was trying to decide if I should go buy stuff from another store, the phone rang with a number I didn't recognize. I answered and said “hello” with the device, and they hung up on me. It feels too easy to leave it at just that, but I'll take it.
Task 4 - Tell someone something they don't know about me using my device.
I was wracking my brain all task thinking of what to say. The biggest problem is that I tend to be super honest, so it's hard to think of something I could tell my family that they don't know, and I wasn't expecting to see anyone else. I was about to give up and go on to the next task, but then an autistic acquaintance came over uninvited and I realized that I hadn't explained my AAC device to her. I used my device to say “I am learning to use this board so I can teach my child when I have one” with the device, and she didn't bat an eye. I explained more with my voice, and she compared it to using educational apps like the ones on LeapFrog. (I worked in task #3 here, too.)
Task 5 - Open a book to a random page and say a random sentence with my AAC device
Opened up Going Solo While Raising Children With Disabilities. Said “When my son was born, I decided to get off the road to get some balance, and I gave up a lucrative weekly income”. Added “income” and “lucrative”.
Task 6 - Summarize a movie with AAC
Watched Heavy Horsepower on Netflix and said with my device: “The movie was about big strong working horses. The man had two young horses who needed to learn to work, so he brought them to a man who teaches horses. While they were learning he went to different places to see how the horses there worked. At the end his horses knew how to work and he knew what to do to make them work.”
Task 7 - Ask someone to tell me about their day, then teach them how to say it on my device
Tried this with my Mom, but she adamantly refused to let me teach her how to say “not too bad” on the device. She kept saying she was too tired, and I was getting frustrated - it's only three words! Is that really so hard? My Dad intervened and asked me to teach him instead, so I did that, but I still feel upset that Mom refused. Ended up having a meltdown about it, but then Mom convinced me that she doesn't mean 'no’ forever, and encouraged me to ask again another time.
Task 8 - Take pictures of three signs and say them with device
A street sign, a stop sign and a sign for the name of an apartment building. I hadn't ever said 'third’ before on the device, but turns out I do have that word. Only one I didn't have is a building name that isn't worth adding.
Task 9 - Think of something I'd like someone to do to make it easier for me to use my device
I took a screenshot saying “I would like to teach you to use this” to my Mom. Then, with some help from me, she said “I want to drink coffee because I am old”. (Her choice of words, not mine!)

Task 10 (on same day as 9) - Watch something and add/open three new words
Watched nature documentary and added “chimpanzee”, “teen” and “elite”.
Thoughts so far:
I started off with a very tough task for me. I'm actually kind of shy (despite being an active-but-odd autistic chatterbox) and using AAC in front of a stranger was very challenging for me. However, in some ways the other interactive tasks were even harder. With a stranger, I felt no need to explain myself. With my parents, the fear of rejection is very tough. And with someone who's never seen me use the device, I chose someone who knows me and knows I can talk, so I felt compelled to explain why I was using an AAC device with them.
I also feel very mixed feelings about the acquaintance I mentioned. She is very accepting of strange behavior, probably because she's quite strange herself. She's also somewhat of a mentor to me in autism, because she's an older autistic woman. However, she's not very good at noticing boundaries and I'm not good at setting boundaries clearly enough for her, so sometimes I end up wanting to avoid her so I don't get pulled into an interaction I can't deal with. In particular, she often shows up at our house unannounced at 10-11pm, wanting to chat, and that's too late at night for me. She also calls a lot, and unexpected phone calls stress me out a bit. I know I need to figure out a way to improve my communication with her. I'm just not sure how.
I was also surprised by the depth of my desire for someone to share the AAC device with. For most of my interests, I'm happy to just be able to chatter at them about it. But I've been really wanting someone in my family to actually use AAC with me. I'll have to do more thinking to really unpack why.

Friday, August 12, 2016

Whose Autism Is It?

I've long been annoyed at two quirks of language by some non-autistic parents of autistic kids - insisting that autistic people should be called "people with autism", and calling themselves "autism parents". Both, independently, are problematic for reasons too long to get into here.

But just recently, I thought about both of those language quirks together. Particularly, the strange fact that the same non-autistic parents who call themselves "autism parents" also tend to insist that their children are "children with autism".

People tend to use adjective-first language for descriptors that they feel are important to their identity, in my impression. If you look at non-disability descriptors, I call myself a white person, a woman, a university student, a psychologist-in-training, a creative person, an aspiring author, an asexual person, a daughter, a sister, and someday I will hopefully be a mother. All of those are descriptors that refer to aspects of my identity. In contrast, I tend to say that I have blond hair and blue eyes. Although I'm not offended if you call me a 'blond' or a 'blue-eyed person', I don't insist on that language, because my hair and eye color are not important to my identity.

So these "autism parents" clearly feel that their child's autism is important to their identity. Yet they don't think it's important to their child's identity. Why?

While reading an unpleasant blog by one "autism parent" (which I don't want to link to, because that means I'd have to look at it again), I realized something. This person acted like his son's autism belonged to him. By which I mean that his discussions of autism were focused entirely on how it feels to interact with an autistic child. Any discussion of his child's emotions tended to be couched in behavioral descriptions, such as meltdowns, rather than actual description of emotions. His reactions to descriptions of autism, too, seemed based on the assumption that those descriptions were meant to reflect how parents felt, not how autistic people felt.

Ever since my first significant encounter with a 'low functioning' autistic person, when I was 15, I've always wondered how anyone can know these kids well and really see the 'horror story' that autism awareness campaigns portray. Because, yeah, they were severely disabled, but they were fundamentally just kids. They played, smiled, showed affection, communicated preferences, all of that stuff. They just did it differently. I could see how a brief encounter could give you the 'horror story' impression, especially in the wrong situation, but how could someone who looked after one of these kids every day see them like that?

At around the same time, I found a website, which I can't find right now. It featured Amanda Baggs, and started with a classic 'autism awareness' style message describing her in the third person and showing how disabled she was. Then, halfway through, it switched tones, showing the exact same pictures with a positive description and explanation and challenging the stereotypes people apply to that kind of picture.

What floored me was that after all of that, at the very end, there was one of those old 'signbook' things websites used to have, and some of the commenters there still didn't get it. One guy in particular commented about a picture of Amanda lining things up and saying she found lining up objects calming, and said that "you can't say it's not sad to see her like that". Even though she wasn't sad at all in that scene, and basically nothing about that scene was sad.

This has always puzzled me. I can understanding misreading someone, but even when the person expressly said that she wasn't sad, this person saw her situation as sad. How does that work? Maybe it's because they weren't talking about the autistic person at all. They were talking about how her presence made them feel sad.

It seems to me that people like this feel like autism doesn't belong to the autistic person. How the autistic person experiences their own autism is essentially irrelevant to them. What matters is the impact that the autistic person has on everyone around them - an impact that they assume must always be negative. Of course, expectations breed reality. If you think your life has to be awful, it will be awful, because your actions will make it so.