Yes, You Might be an Ass!

Donkey looking over a split-rail type of fece at the camera, with a smaller donkey in the backgorund

Donkey by bagsgrove (flickr) – Licensed CC BY-SA 2.0

Autistics are not like NTs (neurotypicals) in the social arena.  We may not pick up on emotions the same way as others.  We may not be motivated by feelings of belonging in the same way as NTs, and may be more likely to go against the crowd (for good or bad).  Our emotional expressions may be misunderstood by neurotypicals.  We may communicate differently or less frequently about our feelings and thoughts.

Some of these things can lead us to being considered rude, jerks, or, yes, even asses.  For instance:

  • YOU SEE: You are someone who doesn’t care that I’m upset
  • I SEE: I didn’t realize you were upset.  I wish I did.
  • YOU SEE: Why do you have to make a big deal out of this?  Can’t you just get along?
  • I SEE: I’m not supposed to express my opinions and thoughts here?
  • YOU SEE: You’re not upset that this happened to me?
  • I SEE: I am upset!  I’ve been trying to tell you!

There’s a lot of these NT/Autistic misunderstandings in any relationship.  Heck, these same types of misunderstandings can take place among pairs of autistics or pairs of NTs – autistics don’t have a monopoly on being misunderstood or misunderstanding others!

While these types of misunderstandings exist, and they might even be more frequent when NTs and autistics mix, that doesn’t mean that every argument between an NT and an autistic is rooted in the differing neurologies.  Sometimes an autistic person is an asshole.  Sometimes they don’t care about another person.  Sometimes they are mean.  Sometimes they are selfish.  These things aren’t autism, nor are they unique to autistics (how many Fortune 500 CEOs truly care one bit about the janitor?  Maybe a few, but certainly not all).

There is a theory that “autistics are morally superior.”  This sometimes gets brought up (typically around Autistic Pride Day) to show we’re better than NTs or some such nonsense.  But usually this theory is presented in a bit more subtle way: how dare you accuse me of being a bad person, when I’m autistic!  Uh, no.  You might actually be a bad person.  You might not be.  I don’t know.  But I do know all of us are capable of evil deeds (both autistic people and generally “good” people are).

Maybe a person is being perceived as an ass because of his expression of autism – but he isn’t actually an ass.

But it’s also possible that the person perceived as an ass, even if he’s also autistic, really is an ass.  We can have the same sorts of human evil and immorality as everyone else.

So…don’t be a donkey.

What Makes a Good Communication System…Part 4

Previously, I mentioned the need for a way to say no, the need to be able to report abuse, and the need to be able to be inappropriate.  For this post, which I think will be the final post in this series, I want to talk about the value of babble.

A close-up of a magnifying glass with a blury background that may be a desk

Magnifying Glass by Auntie P (Flickr), Licensed CC BY-NC-SA 2.0

Since I wrote JTalk years ago, I’ve talked to many users and parents about how my text-to-speech software was and is used.  Very few people use it as I thought they would.  Instead, I’ve heard some neat stories about how the software is making people’s lives better in ways I wouldn’t have predicted.  One of the more common usage is to connect meaning, sound, and writing.

It’s a conceptual leap to realize that symbols can have meaning, whether those symbols are letters on a piece of paper or sounds made by someone’s vocal cords.  Once that leap is made, however, people typically want to explore the symbols, their relationships, how to write them, and how to say them.

With the users of JTalk, there were three things I heard multiple people doing:

  • Typing repetitive “gibberish” and having the computer speak it
  • Typing something to communicate, listening to the computer speak it, then repeating the words vocally
  • Typing words to hear and then “practicing” alone, having the computer speak the word and then speaking it vocally

The first of these, typing repetitive “gibberish” and then having the computer speak it, consisted of something like typing long strings of a single letter (“TTTTTTTTTTTTTTTT….”) and then hitting speak.  Or it might consist of a repetitive sound, like “Wowowowowowowowowowowowowowowowo…”  In effect, these might be seen as stims (they are repetitive, and that can be calming or grounding).  But I think more may be at play here, at least some of the time.  Just as a neurotypical starts with vocal language by babbling and making nonsense sounds, some autistic people may do the same when they come to language late.  Further, this type of sound play is linking a symbol to a sound (“what does ‘wo’ sound like?”).  In effect, it’s teaching a person that these sounds can be strung together in ways that produce desired output – something people who speak do every day.

Of course I won’t ignore or dismiss the value of it just from a stim standpoint!  But it is more than that for some people.  Unfortunately, this type of sound play can also be annoying or distracting to others.  Certainly there are times and places where it is inappropriate, but it’s important to ensure that there is a time and place where it is appropriate!  There’s real learning and language development here for some people (and for others, it’s just plain calming to have control and assurance of what comes next).

Other people might type something and then hit speak, listening carefully to what is said.  Then, they can repeat the words using their own voice.  I don’t do this so I don’t know for sure what people’s motivations are, but it seems as if it gives people confidence and a reference point to anchor their own speech.  They can hear the words and know what they sound like (they may already, but this will give extra confidence).  Regardless of the reason people do it, this seems to give people the confidence they need to initiate and respond to others verbally, when they would have remained silent otherwise.  So despite the apparent repetitive nature of this, it’s a good thing!

Yet others practice words in private.  In effect, it’s a way of people learning literacy, albeit backwards from how most neurotypicals learn it.  Most neurotypicals learn audible language first, then written language.  So they may need occasional help to connect the symbols on paper to sounds they already know.  Some autistic people do better in writing, so they may have a much larger written than spoken vocabulary (I’m one of these people).  They may know a many words that they can read and write, but can’t speak.  What better way than to have a non-judgemental and infinitely-patient device pronounce the word, as often as you need it, as repetitively as you need it, to get a handle on the word?

I suppose these things have less to do with the construction of a communication system than the uses that a system has.  But they are vital – it’s important a person with any communication system (including the standard vocal system!) gets a chance to play with sound and symbols, to develop the connections and confidence they need to communicate.  It’s also interesting that these types of activities are sometimes complained about by parents – particularly strings of “nonsense” sounds being emitted from a device.  It seems some people expect someone to take a new means of communicating and instantly speak deep thoughts eloquently to everyone.  Few people do that!  Most of us need to learn to use our communication tools, which involves a lot of just plain tinkering with voice, symbols, sounds, etc.

These activites fascinate me in another way, too.  I wrote JTalk for people who wouldn’t speak in some situations – yet I see people using JTalk (and other devices/software) so that they can speak more!  A common concern parents and others have when a person uses some speech is given alternatives to speech is that allowing someone to type (or gesture, symbol, write, etc) when they can talk will remove incentive for speaking from the person.  Quite the opposite seems to be the case – in many cases it seems having the speech device or system encourages people to speak more!  Trust me, as a part-time speaker, I’ll speak when I can speak and communicate my thoughts clearly.  Why wouldn’t I?  Unless it’s painful or difficult at the time (which means I probably wouldn’t communicate at all without alternatives), or completely inaccessible, speech is just plain easier and quicker.  It’s naturally self-reinforcing.  I don’t need communication alternatives removed to grasp this!  And, for me, having alternatives handy means I’m more willing to stretch myself and speak more – since I do have something to fall back onto for an emergency.  I don’t need to preserve speech energy for emergencies that rarely occur!

All this said, there’s a lot to designing communication systems, and a lot to understanding how they are used.  I’m not an expert on this, although I have a lot of experience personally with my communication needs.  I encourage people to learn more, both from users of speech alternatives, from family of users, and from clinicians.  There’s a lot more to this than just my opinions.

Standing for What is Right – Governor Carr

In the US, we often say we want politicians with ethics, who will do the right thing.  In WWII, the US state of Colorado had one of these politicians – Governor Carr.  He’s been ignored (for the most part) in history, primarily because he did the right thing.

In WWII, Japanese-American US citizens were feared by others.  They were forcibly moved from their homes if they leaved near the coast and often ended up in, essentially, concentration camps (not in the Nazi sense, but still plenty bad).  Many lost everything in this process.  There was little outrage among the public, with one exception – Governor Carr.  He spoke eloquently about the rights of these citizens.  But as a result, this governor, who was at one point a rising Republican star who could be expected to get his party’s nomination for President, destroyed his career.  Ethics were not what the US wanted.  The US wanted a politician that shared their bigotry and bias.

History has vindicated Governor Carr.  Not one incident of sabotage could be attributed to Japanese-American US citizens.  These citizens even fought in the European theater and became an extremely highly decorated unit, likely as a result of their need to prove that they really were loyal – something that should never have been required of them.  That the US put our own citizens in prison camps, with horrible conditions, for no reason other than their race and national origin, while simultaneously fighting a racist regime in Germany shows the depth of hypocrisy (we were joined by Canada, who did the same to their citizens).  It’s a sad chapter in history.

One thing we can learn from Governor Carr, however: do the right thing, even if it costs you.  I’d rather be the rejected politician that Carr became than the person who thought it was okay to corral and fence in my neighbors.

Below is a four-part speech by a man who wrote a book about Governor Carr – it has some fascinating and horrifying parts that show what scared people can do to their neighbors.

What Makes a Good Communication System…Part 3

A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscationI’ve written about what makes a good communication system.  This time, I want to talk about newspeak and why it’s important to include controversial words in a communication system.

(Previously, I wrote about the need for a way to say “no” and the need to be able to report abuse)

I remember a talk a few years ago at Autreat where an audience member, during a demonstration of various AAC equipment, talked about how she didn’t like that a device had an icon representing a popular fast food joint, since that was essentially free advertising of the chain, the chain had very unhealthy food, and a child with such a device would then be asking to go there more often, when its’ more desirable to go elsewhere.  I’m probably paraphrasing things wrong, which is why I’m keeping this somewhat vague.

I had a problem with that thinking.  Sure, a parent may decide it’s a bad idea to go to a fast food chain for their child, which is certainly a parent’s right (and, frankly, probably good for the kid’s health).  But eliminating the vocabulary to ask this is not encouraging communication, nor is it providing the same sort of teachable time that a child who speaks would present.  A parent has the right to say no to a child’s request.  And, in fact, parents do so quite often – for the good of their children.  Eventually children learn that some things are off-limits and that continued pestering of the parents will result in negative consequences.  As for the icon choice being free advertising, how else would you represent a fast food chain?  The brand logo seems like an obvious choice!  (note that I did agree with her that only including one fast food eatery isn’t a good idea – any system should strive to include multiple options.

There’s far more controversial things than fast food chains, though.  If you spoke during primary school, do you remember when you first said a naughty word?  For most of us, I’m guessing that was pretty much the first year we were at school.  Certainly most of us knew enough to not say it in front of the teacher (although some of us probably learned that one the hard way!).  In other words, we learned an proper time and place for cussing: you can laugh about the words with your friends on the playground, but don’t do it in front of any adults or any tattle tales!  This is a huge lesson when it comes to communication: language use should differ in different environments.

So, when should a child have cuss-words as part of their vocabulary, if they use a non-spoken language system?  The answer is, for parents and teachers: before you would like them to!  Certainly a school or parent shouldn’t spend hours teaching how to cuss, but the language should be subtly made available, and consequences of its’ use should also be made available!  If the child does cuss at mom to get a reaction, it’s entirely proper for mom to react – just not by eliminating vocabulary.

Likewise, when was the first time you might have talked to another kid about sex?  Once again, it was probably well before it was “age appropriate” in the eyes of parents (who probably would prefer those topics to wait some time).  A language system needs the words that a 13-year-old will use when secretly looking at Playboy magazines with another kid.  You might not want a 13-year-old to look at Playboys, but that doesn’t mean he shouldn’t have the language to express himself.  You don’t duct tape the mouth of a typical child so he won’t talk about naughty pictures with a friend!

In 1984, George Orwell describes a future where words are eliminated from language to ensure “goodthink:”

“Don’t you see that the whole aim of Newspeak is to narrow the range of thought? In the end we shall make thought-crime literally impossible, because there will be no words in which to express it. Every concept that can ever be needed will be expressed with exactly one word, with its meaning rigidly defined and all its subsidiary meanings rubbed out. … Every year fewer and fewer words, and the range of consciousness always a little smaller.”

Sadly, I’ve seen communication systems for Children programmed to offer a sort-of “newspeak.”  I’m sure it also happens with adults.  It’s convenient to never have anyone bring up any uncomfortable subjects, never have words that cause disruption.  But it’s not how typical children (or adults) communicate, and it’s not how people with communication disabilities should be forced to communicate.

Certainly different people need different vocabulary, but I very much support a vocabulary system that can include words that may not be the focus of instruction, and may even be “inappropriate.”  Newspeak is not an alternative to teaching proper language use!

Unfair Disability Advantage?

There’s a bit of controversy over one of this year’s 400 meter Olympic runners.  Oscar Pistorius of South Africa is competing on artificial legs.  Some have questioned whether his legs make him faster than non-disabled athletes, although the scientific evidence is a bit mixed.

For a bit on the story, see this Star Tribune opinion piece.

It’s a bit ironic since normally we face the issue of being seen as less able than non-disabled peers.  In this case, he’s seen as more able.  There are lots of other interesting questions here too, such as, what differences are “unfair” in the Olympics?  After all, Olympic athletes are unusual, and have unusual differences that let them compete at an amazing level far beyond the abilities of most of the rest of us.