10 Second AAC on a Mac

Speech can be a difficult way of expressing yourself if you’re an autistic, even if you can sometimes use typical speech.  AAC (Augmentative and assistive communication) is basically any technology or system (including low-tech such as grunting or writing) to communicate without using typical speech. While I’m a huge advocate of low-tech solutions for lots of reasons, sometimes it is nice to have a text-to-speech device. If you have a Mac computer, you already have a basic AAC text-to-speech device – and you can access it with about 10 seconds worth of work.

This is not a substitute for a decent AAC solution that fits the user, but it’s a quick and dirty method that may help you out sometime.

  1. Open a terminal window by using pressing both the command and space buttons at the same time.  In the search box, type “terminal” and press enter.
  2. In the new window, type say -i and press enter.  The -i is actually optional – it tells the “say” program to highlight the words as they are spoken.
  3. Type something and hit enter. It will speak whatever you typed.
  4. Repeat step 3 as needed
  5. When done, you can just close the window

There are a ton of options for the say program, such as -v Victoria or -v Alex for different US English voices (these aren’t the only options). There are voices for other major languages besides English, and also voices for other English speaking locations than the US.  For instance, -v Daniel is a British man’s voice.  Unfortunately I don’t know if there is an equivalent for a woman’s voice (there is not on my computer).  There are some voices that might be more fun too, like -v Zarvox (a robotic voice).

You can use these other voices by, at step 2, typing something like:

say -i -v Zarvox

And maybe you now have another option for communication!

Prompt Critical Excursions in Autistics

In nuclear physics, a nuclear reaction is said to be “prompt critical” if the splitting of one atom causes the release of immediate neutrons that cause an additional atom to split. An excursion in a nuclear reactor or experiment occurs when the nuclear reaction rate exceeds the desired rate. Typically, this is a bad thing – Chernobyl, for instance, was a prompt critical excursion. Now, I’m not a nuclear scientist, and have only taken two freshman level physics courses (nuclear fission was not covered), so I’m probably using these terms wrong, so I beg forgiveness from any readers that actually understand nuclear fission!

Autistic people – and likely other people under extreme stress – are subject to a similar type of excursion. I’m not talking about a meltdown that is traumatic to the parent of an autistic, but something more innate and troubling to an autistic person – and something that can often be prevented.

I can explain it best with a story from my past. I’m mowing a lawn as a teenager to earn some money when I accidentally run over the hose. Now that’s not the end of the world, but it’s definitely not a desired outcome of lawn mowing! Maybe my attention was elsewhere, maybe I misjudged where the hose was, maybe I just didn’t realize it was there under the tall grass – but regardless I did something you most certainly don’t intend to do while mowing the lawn. But, I move the rest of the hose out of the way and keep going.

Of course the hose is still on my mind – how am I going to explain that I did that? What will happen when I tell the adult? How can I replace the hose? Suddenly, I realize that I’m plowing through the vegetable garden with the lawn mower, murdering scores of carrot plants. Shit! How could I be so distracted?

Now I have to explain how I ran over the hose and the vegetables! Nobody is going to believe that I ran over the carrots accidentally after I just ran over the hose! I should have been more careful, that’s what you’re supposed to do when you make a mistake. But I made things worse, as now the I have to explain the hose and the vegetables. And you can’t replace the carrots in the middle of the growing season – it’s not fixable. Fuck!

But while I’m thinking of this, I finally realize I’m hearing an awful sound from the mower! How long has it been doing that? I shut it off, hoping I didn’t destroy anything. The engine sure looks hot. I check the oil – only to find it doesn’t seem to have any. Shit! Now what? I go find the oil and add some to the mower, hoping that solves my problem – but I can’t even pull the cord now. Shit, the engine is seized! Fuck! I murdered a hose, carrots, and a lawn mower! Why didn’t I check the oil level?

Unfortunately it’s not my mower, carrots, or hose – I’m mowing my neighbor’s yard with her mower. So I walk up to her porch, so I can knock on the door and face what I have coming. As I ring the doorbell, I step to the side, to be clear of the door. What am I going to say? What are my parents going to say? As I do this, I feel something brush my leg, then, too late, I realize that I just knocked her garden gnome off the porch, five feet to its’ death. It’s smiling, decapitated head seems to be laughing at me. Nothing is going right – I even killed a garden gnome. I don’t know anyone who has killed a garden gnome. I don’t even know what the penalty for garden gnome murder is. Maybe I an claim gnomeslaughter, because I didn’t intend it. But of course the neighbor is going to think I wanted to destroy all her stuff. Shit!

This was a slightly modified story of real events – I did murder a mower, carrots, and hose, as well as a chunk of fence, but the mower was killed in a different way, and, thank God, there was no gnome on the step! But I imagine at this point, I was in tears, even as a late teen, and probably just couldn’t handle any of the world right then – everything I touched turned to shit.

I suspect most autistic people can relate to this – one thing goes wrong, and, like a prompt critical excursion, that causes the next thing to go wrong which causes the next thing to go wrong, until the cycle runs out of things to go wrong.

I will say one thing: The wrong thing to do in this circumstance, if you’re on the other side of the door while I’m standing on the porch, is to say, “Why weren’t you more careful after the first mistake!” The right thing to do is what you do to stop a nuclear reaction: you separate the atoms (or, in this case, the many possible things that could go wrong), preferably with something that absorbs the neutrons. Ideally, you recognize what happened as someone trying to do right, making an honest mistake (the innocent hose), and then that knowledge of a mistake screwing up the coordination and thinking ability of the person, so that, naturally, something else went wrong. Sure, someone else probably would have recovered enough after the hose, but not everyone reacts the same way to things.

I’ll guarantee the autistic is mortified, embarrassed, and very sorry. This wasn’t what they set out to do. And they know they fucked up without you scolding them. The self punishment is plenty to negatively reinforce.

But, to someone who hasn’t experienced this, it looks like someone throwing a tantrum, taking out aggression on everything nearby (or, in the case of a social criticality, everyone nearby). But this isn’t aggression, even when it triggers socially inappropriate responses to other people – its incredible stress as a world the person is trying to live in falls apart around them, with everything they try to do to respond (such as think of the script for telling someone they messed up, like a responsible person would) causes yet more problems.

So, if you see this, look at that first event – could it have been an accident? Was it perhaps not done intentionally? Could the following events possibly be explained by the stress on the autistic after doing the first one?

Even as an adult, I run into this cycle. When things go wrong, they really go wrong for me – and people just can’t understand that perhaps I wasn’t trying to be an asshole, but made an honest mistake that created more honest mistakes. Give me some space away from the problem, let me know you recognize that I’m having a bad day and didn’t mean for things to go to hell. Encourage me, but don’t pressure me to try again later (you don’t want more excursions!), showing confidence I can do it, giving me space and time to make sense of the world again. It’s not defiance, it’s an accident.

I’m Sorry I Hurt Your Feelings

Really, I’m sorry I hurt your feelings.

Perhaps you are a parent, a therapist, a brother or sister, or somehow otherwise someone who has an autistic person in their life.

Perhaps I said something you didn’t like. Maybe I said I don’t want to see autistic people medically abused to solve “behaviors.” Maybe I said that ABA therapy is harmful. Maybe I said your anti-bullying system is cruel because it focuses on changing the bullied rather than the bully. Maybe I said that it’s okay for autistic people to have sex and masturbate. Maybe I said that doctors ignore our complaints. Maybe I had no sympathy for someone who murdered an autistic person, and said I don’t give a shit if they were stressed.

You see, no matter how nicely I try to say these things, how gently I try to explain that some things people do to autistics (even with good intentions) cause harm, it’s not these things that matter. Often, it’s the non-autistic’s feelings.

Even worse, for autistic people, these things aren’t about us wanting to defend our pride and ego, to have people have sympathy for us, or to justify whatever it is we’re currently doing. No, they are about our life.

You see, you might be upset because I dislike some random social skills training program.

Yet I had the shit kicked out of me for not being normal. I’ve literally run for my life. Even as an adult, I get stares, fingers pointed, and laughter directed at – certainly not with – me. So, yes, I’m sorry I said that social skills program was bad. But I’ve had decades of social skills training, decades of society trying to fix how I interact through negative reinforcement and repetition. I’d like to see people like myself able to live without fear of beatings and humiliation just because we forget some social rule.

You see, you might be upset because I say that the medical world sucks for autistic people, or that a drug is bad, because you’re doing that thing with someone you know.

Yet I go to the doctor and have my cries of agony ignored, because I’m probably just “anxious.” I’ve never had pain adequately treated by a doctor, with the exception of some dentistry (and only some). My cries of pain are ignored. Pretty much always. As are my sensory concerns. Ironically, I’m accused of not wanting treatment for autism, but when I ask for treatments that exist for sensory conditions that cause me pain, I’m ignored or told “everyone has that.” No, everyone does not have this pain when they go outside. You’re upset because I said the strong anti-psychotic you gave your kid might be a bad idea. Of course I’m part of the people doctors try to trick into receiving it against our will. So, ya, it’s a little personal for me.

You see, you might be upset because I lack empathy with the parent who drowned/choked/poisoned/stabbed/shot their autistic child — I don’t recognize how hard it is to be a parent.

Yet it’s not non-autistic parents that are being drowned and choked and poisoned, it’s autistic people. It’s people like me. So you aren’t going to get an apology from me when I have more empathy for the child that was a problem to dispose of, rather than having empathy for the adult who should seek a solution to their problems that doesn’t involve murder.

I realize #NotAllParents are awful to their kids. Plenty of therapists do good work. There are some wonderful doctors. I get that – how could I not? But I should not be forced to shut up about how me and my kind are being harmed just because people don’t like hearing certain things they might or might not do are harmful. All too often, we’re asked to remember the feelings of others, and how it might feel to have something they do be criticized – as if we don’t know what that feels like, having everything from the way we smile to the way we show joy to the interests we have to our self care skills criticized our entire life. We know what it feels like to be criticized. We also know what it feels like to be subjected to constant behavioral treatment, forced medication, inferior medical care, sub-standard education, and physical attack. We know what it feels like to be bullied every day of 13 years of school, with no day when you’re just left alone. We know what it feels like when the first thing talked about when another autistic person is murdered is how hard the caregiver’s life must have been.

In the meantime, I better remember to tell all the non-autistic people that they are okay and doing nothing wrong, whether or not they are. I can’t leave this unsaid, lest some person read criticism that wasn’t intended. Their feelings matter. That’s what this conversation is supposed to be about, after all.

Accusations of Abuse, Guardianship, and Community Response

Recently, the story of Sharisa Joy Kochmeister has been the focus of much attention in the advocacy community.  And I’ve stayed silent on it, because, frankly, I don’t know the facts of the situation.  But I can’t keep doing that.

My understanding of the background of this – which is open to any and all corrections people may have – is:

  • Sharisa is a 30-something adult
  • From a Denver Post opinion piece (not an investigative article), “The ordeal began in March when her father was accused of abuse when he was seen in a Denver hospital using his finger to clear his daughter’s throat after she had vomited. She kicked him. He pushed her and it was caught on video.”
  • The father was accused of Manchausen by Proxy. This basically means that Mr. Kochmeister was suspected of making Sharisa ill.
  • While the father has not been charged with a crime, the county where Sharisa lives has kept Sharisa’s parents (and indeed most other people) from visiting her.
  • Sharisa is unable to communicate without her father or sister being physically present and possibly facilitating (through actions such as holding a communication device).

Most of the comments, petitions, and advocacy pieces I’ve seen publicly start from the assumption that the abuse allegations are false, for several reasons:

  • People personally know the parents and think they are good people.
  • That accusations of Munchausen by Proxy are often wrong (For instance, in Where is Sharisa Joy Kochmeister, there is a section on false allegations of Munchausen by Proxy with the leading sentence in bold saying, ”Beware the accusation of Munchausen by proxy”).
  • That criminal charges have not been filed against the father.

I’m uneasy with this logic, and I want to explain why. So let me go through each of these three points.

Her Parents are Good People

Perhaps.  I don’t know them, and I’ve known some people I thought were wonderful that turned out to have some really awful, evil parts of themselves.  For instance, one of my best friends in college was recently found guilty of molesting his daughters.  I never would have predicted that, but the evidence was extremely strong and convincing, and I’m glad his daughters are no longer in his care (he is currently serving a long prison sentence).

So I can’t comment on whether or not the parents are good people. I will say that I’m concerned and saddened that any disabled person can communicate only through a very small number of people (or, in the worst case, one).  I am concerned that Sharisa is unable to communicate through anyone but her father, for reasons I’ve written about in general terms elsewhere – how do you report abuse if your abuser is always there when you communicate?

I’m not dismissing her ability to communicate.  But I know that influence, particularly in abuse, and particularly when it’s done by someone who has the potential to do great harm in retaliation, is a powerful thing. And I also know that the vast majority of abuse victims, when asked why they didn’t report that abuse, say the same two things: either they felt they wouldn’t be believed (because the abuser is respected or seen as a wonderful person) or that the abuser can make things worse for them.  We’ve seen both with Cosby’s accusers, who felt they wouldn’t be believed and that Cosby could retaliate and essentially keep them from their dreams in modeling or show business. If this is hard for women who are, in some cases, thousands of miles away from their abuser, imagine what it’s like if that separation isn’t possible.  It’s also not just abuse – imagine other decisions, such as becoming sexually active, deciding whether or not to seek an abortion, or discussing treatment options for STDs – would you want to have those conversations with a parent in the room?  Unless you have a particularly unusual relationship with your parents, probably not.  We are all influenced by people we are around, and that influences what we do and don’t say. It’s one of the reasons it has taken me so long to write this – but it has become too important not to.

When my wife was hospitalized a couple years ago, I remember how I was asked to leave the room for a few minutes, being told they needed room to transfer my wife into the bed. I asked her they did while I was gone, and she said that, yes, they did transfer her to the bed, but that they also asked her if her relationship with me was good and if she wanted me to be there – she was kind of surprised by the questions (I don’t think there was any suspicion of abuse by me, I believe this was asked to nearly all patients). I’m not offended by that in the least – for some abuse victims, the only time they have the chance to be protected from their abuser may be when they are hospitalized, and I thought it was one of the excellent things the hospital does – if it gives just one abuse victim the courage to speak, it is an awesome way of doing business. It is absolutely something a hospital should do. Likewise, it’s important for abuse victims to have means of communicating that don’t involve their abuser’s presence or (real or imagined) control.

Accusations of Abuse are Often False

This simply isn’t true, but even if it is, it does not mean that real abuse doesn’t exist. Too often we hear about children (I’m not implying Sharisa is a child, but most of the time we hear about state-investigated abuse, it is regarding children) that were inadequately protected by the state after abuse allegations were made.

There are cases where Munchausen by Proxy is real – we should not dismiss this as merely claims that the evil state makes against parents of disabled kids. There is evidence that it may be over-diagnosed in cases where the caregiver is not the cause of the illness, and there is a real illness, albeit likely a hard to treat one.

But, there are also real instances where people are harmed by fictitious disorders imposed on them.  According to the Cleveland Clinic, approximately 1,000 cases of reported child abuse per year are related to this.

It is irresponsible for advocates to say that abuse did not occur when they do not have the full evidence. Abuse can happen to anyone, and abusers come from all social strata, all races, all sexes, etc.  It is not uncommon that abusers are well regarded and seen as “the least likely person” to abuse another. So all allegations of abuse must be taken seriously.  In fact, this is something the FC (Facilitated Communication) community has been stressing – while there was controversy regarding apparently false reports of abuse by facilitated communication users, there were also real cases of abuse that were investigated and found to be true, backed up with evidence in addition to the victim’s own words. Allegations of abuse must be investigated, and anyone that says otherwise is not an advocate for vulnerable people.


Some individuals have made allegations of abuse, but there is no evidence that the numbers of allegations by individuals using facilitation is proportionally different than the numbers of allegations made by speaking people. In a survey made at the SUNY Health Sciences Center, it was found for a given time period that of 6 case in which individuals alleged they had been sexually abused, for 4 of them there was physical evidence they had been abused (Botash, 1993). Cases can lead to court convictions (Randall, 1993) and/or confessions by the accused. As with allegations made by the nondisabled population, some allegations may be unfounded and others simply impossible to prove.

The above is from Douglas Bilken, a leading FC proponent, writing “Facts about FC“.  Full citations are available in the link.

Regardless of your views on FC, allegations of false abuse don’t mean that real abuse doesn’t happen. For Munchausen by Proxy, in particular, what is important is whether or not incidents of more severe sickness are associated with the presence of the accused. So there is one question that is relevant here, but which the answer is not known: Have any of Sharisa’s medical conditions improved with the absence of her family? That alone doesn’t prove that abuse occurred, but it can help substantiate that the family is not the cause of any of the symptoms if all the symptoms continue despite the absence of family.

Likewise, I would think it inappropriate to say that Sharisa’s parents did abuse her – most of us (and everyone I’ve seen speaking publicly, with the exception of Sharisa’s family and Sharisa in the presence of her father) don’t have enough knowledge of the situation.  And we should see false allegations of this kind or terrible. Instead, I believe we should say what is logically required: We don’t know.

Criminal Charges have not been Filed Against Sharisa’s Father

This is true – there are no publicly known charges against Sharisa’s father, and is important for everyone to remember. That said, even charges don’t prove someone’s guilt – that’s why we have a trial system. But the American justice system is designed to only convict people when the judgement is that they are “guilty beyond reasonable doubt”.  Thus prosecution may not occur in all cases where a crime has been committed, particularly if a prosecutor believes it is unlikely a jury would agree “beyond a reasonable doubt” that a crime has occurred.

That said, there is a court process that determined Sharisa’s current placement and prevented Sharisa’s family from visiting freely.  We don’t have the information of what was presented at those hearings, so it is irresponsible for us to confuse lack of criminal charges with lack of a crime. Again, we simply don’t know. It could have been a huge miscarriage of justice against Sharisa and her family, but it also might have been justified in light of the evidence. We don’t know.

What Needs to be Done

So, we don’t know if abuse occurred or not. If it did, she should not be forced to live with her abuser. But her opinion still must be respected. People who are competent are allowed to make bad choices.

If it didn’t occur, where should she live? Where she wants to, clearly.

Unfortunately, the county believes she isn’t competent, thus someone else gets to make decisions like where she lives. On top of that, she is only making statements about where she wants to live in the physical presence of someone that may or may not have abused her. This makes it very hard for the county or anyone else that wants what is best for her, and doesn’t know if abuse occurred or not, to know what she truly wants.

I wish she could communicate without a family member in the room. If she could, and the family’s statements are correct about this not being a case of abuse, this issue would likely be resolved.  If she could communicate without a family member in the room, and was as courageous as I believe her to be,  she could affirm or deny abuse allegations. I have long believed that the primary goal for an autistic person’s communication should be that they are able to communicate in a variety of situations, with a variety of other people around, and using a variety of techniques. I stand by that.

But of course it’s not always possible. What is best is not always what happens. Clearly this is one of those cases, and someone’s ability to live where they want to is on the line. If you can’t communicate (which is what the county clearly believes), you can’t direct your life.

She was placed in a nursing home for a while. Nursing homes aren’t the right choice for anyone. I could write more on that, but other advocates have written plenty if you want to know why.

The county must expend the resources necessary to provide an environment as conducive as possible to communication. This means she needs the electronic devices she uses to communicate to be available and maintained. She needs to be assessed by experts who have a presumption of competence. She needs to be listened to when she communicates with ways other than language.

Last week, Disability Law Colorado (the P&A agency for Colorado) issued a statement that said that this is happening, and that the situation is more complex than media and many advocates have said it is. Of course they could be wrong, lying, or have a grudge against Sharisa or her parents.  But they also may be right.

That doesn’t mean we should just trust them and remain silent. We should demand that Sharisa can fully participate in the community and that the State ensures that everything possible is done to allow her to communicate.  The abuse allegations should continue to be investigated: in particular, has any part of Sharisa’s medical conditions shown improvement since her removal from her family? Was the video evidence so strong that it, by itself, justifies removal of Sharisa from her family?

There are lots of questions. And this is not a case of child abuse. When a crime is committed against an adult, and is not a sex crime, the public does generally have the right to know the details, so that we can make informed opinions.

Regardless, our advocacy must be first and foremost about Sharisa and her desires. Not the state’s. Not her parent’s. One side says that her communication desiring to be back at home is either not hers or is influenced by her father. The other side says she wants to be home. What Sharisa wants is what is important – not what her father wants, and certainly not what the county wants. And our advocacy should be focused on making sure she has as much of an opportunity to voice her views without a shadow of influence as possible. I fear that may not be possible, but I really don’t see any other way to get the resolution that Sharisa needs while her communication is being dismissed, as it is now. Lack of apparent influence is important (and I use the term in the general sense – the same thing would likely happen if a person speaking with their vocal cords only talked with someone that was considered a potential abuser in the room – it might even strengthen the case that abuse is occurring). I hope it’s possible and we need to advocate that she be given every opportunity to communicate this way. Starting with 24×7 availability of devices she’s used in the past to communicate and support people that are not making presumptions about her parents. Most of all, they must not presume that she is not competent.

Certainly if you have other evidence that the rest of the community does not have, absolutely use that in your decision making. But the rest of us need to be responsible and to use the evidence we have, realizing we don’t know several really critical pieces of this story. I am not saying her parents have done any wrong. Nor am I saying they haven’t. Because I don’t know, beyond saying we need Sharisa’s voice a lot more than mine in this discussion.

Stored Phrases Should be Banned from Communciations Devices!

Okay, maybe not banned, but close to it. Let me explain.

When most people think of communication devices, they think (today) of iPads and iPhones with communication software.  When they think of that software, they think of two things: First, it needs to speak with a computerized voice. Second, it needs to use cartoon pictures that represent words, or, worse, phrases.

All of this is wrong. One of my preferred forms of AAC is a pencil and paper – it’s cheap, it’s hard to break, not a theft target, with it I can say literally anything I want to say, it allows me privacy, and it works nearly anywhere. Pretty much the current crop of iPad software fails in at least some of this.

I’ve written before about the problems with high tech AAC – but I also recognize there are good things about it (and thus I use it too).  Too often high-tech is used when low-tech is better. For example, at an airport, pencil and paper works wonderfully, while iPads fail for many reasons. Airports are often bright, which makes iPads hard to use sometimes (not always though – sometimes they work fine in the light level). Airports are very loud, so the voice is next to impossible to hear coming from tiny iPad speakers (and the external speakers have extra problems). This means people need to read the screen, which often means handing a $500 device to a total stranger. I can take a paper note with me through the metal detector, but can’t take the iPad with me. Oh, the batteries don’t die either with pencil and paper, and if something goes wrong, replacement parts are available pretty much anywhere for pencil and paper (anyone depending on an iPad needs an iPad in reserve at every location they frequent (school, work, home) – sadly this isn’t something any funding agency understands).

But that’s the problem with the technology. The other problem is the language system used. There are good picture-based language systems (such as Minspeak), and there are also good non-picture-based language systems (such as English!).  What these systems have in common is that they aren’t just stored words, they are an actual system. And the system isn’t just picking and organizing a bunch of words (“core vocabulary”), but thinking through things like conjugation and subtle variations in meaning (“I am going to the store”, “I went to the store”, “I will go to to the store”, “I am in the process of going to the store”, “I’ve gone to the store”, “I am at the store”). These should basically be the same button presses, maybe with one variation in the sequence, if a picture-based system is used. Usually, they aren’t. If you’re using pictures because someone lacks English literacy, you need your pictures to do this. You need a picture language, not just a bunch of pictures with 1-to-1 associations with words.

More concerning to me is stored phrases. I don’t think most adults with language literacy (picture language or standard language literacy) need more than maybe 5 or 6 phrases. Here’s what I use:

  • Yes
  • No
  • I don’t speak but I can hear and understand fine.
  • I use this to talk
  • Thank you

Basically, I have the things I need to answer *very* quickly and I say *a lot* in there.  I don’t have things like, “My name is” or “I like to eat tomatoes” or any such nonsense like that.  I don’t get asked my name hundreds of times a day. I do answer yes/no questions a lot, and I need to explain that I don’t speak but am not deaf a lot. I also get questions about what I’m doing (“I use this to talk”). If I want a food dish with tomatoes, I can take a few seconds to spell that out. I’ve thought about adding a 6th, but haven’t gotten around to it yet: “I don’t understand sign language.” When I visited Montreal, I found, “Do you speak English?” to be useful, but in my normal travels, it’s not particularly useful.

The reality is that most of the things I say can’t be predicted in advance. Sure, I can try scripting them, but one of the reasons scripting sucks for teaching social skills is that people are a lot more dynamic than that. You can’t make the other person follow your script! If you could, stored phrases would be awesome. But they aren’t.

If you have language, do the following experiment to see what I mean. Pick a day to try to use note cards to communicate. Before you go out, write down everything you might need to say. Then try to use them to go about your routine.  Feel free to add cards as needed (take a pencil with you).  Put a tick mark on every card when you use it.  Then, at the end of the day, count up the tick marks and divide by the number of cards – this tells you how often you use a given phrase. First, I bet you will be surprised by how many cards you need to make. But second, you’ll be even more surprised how little you say certain things you thought you say a lot.

Then, the next day, do the same exercise, but take a note pad and pencil instead of note cards. I bet you find this more convenient.

So why the focus on stored phrases? It’s two-fold. First, most people who historically used communication devices could not speak because of motor control issues (for instance, Cerebral Palsy). That’s who governments would buy expensive devices for. The biggest complaint then (and still to an extent now, even among people with relatively standard motor abilities) is the slow speed of communicating using a keyboard or touch screen or scanning interface (particularly for a scanning interface). If you can only get one word out every minute, you try to maximize your throughput – and so do the people who are waiting for you to finish your thought (often for selfish reasons). So stored phrases seem like a quick win! That’s where real language systems come into play – how do you give someone flexibility in communication at the same time you give them speed? You don’t use stored phrases. I will also get to a second point in a minute (talk about speed of communication…) – about how this doesn’t apply in the same way to many autistic people using communication devices that are properly specified for them.

Second, people think stored phrases are easier for people developing language. In some cases, that is true – but primarily as a language motivator. If you have a funny joke or useful phrase programmed into your device, and it comes out as language, you see the beauty and significance of language. It can be very useful in those situations, particularly with beginning language users.

But, for people who already have language, I’m sick of the focus on stored phrases and icons. We need to focus on the actual problem: slow communication speed. And that means an actual evaluation of the person’s abilities, not trying to find the fastest way they can use whatever the sexy technology of the day is (iPad / iPhone). For me, that’s a keyboard – I can type 100+ words per minute on a good quality clicky keyboard (the click is important – I need the auditory feedback and rhythm – most keyboards suck for that today, because they’ve gone to great lengths to become quiet!).  For a lot of my fellow autistic people, I suspect they could type quickly too. Clearly not everyone can – and for people that can’t, appropriate input systems need to be considered. That means I don’t do great with an iPad! That’s okay (laptops are good and cheap these days).

But with typing being a potentially 100+ WPM input method, it needs to be considered more often. Studies show that at these speeds, word prediction, word completion, and stored phrases actually slow down the input – it’s quicker to just type the word than to cognitively process it, particularly in the badly designed systems that vary the placement of words in selection lists over time based on how you use them (thus preventing you from developing a muscle memory for the word). A good system, even if it isn’t used by a 100+ WPM typist, develops muscle memory. Even for slow input speeds.

In addition, the act of trying to scan a page to locate a word among a bunch of pictures or a completion list interrupts the communication process if I already know the word I want to use! And, for me, the biggest problem with speaking is that my own words interrupt my thought process. So I want to minimize interruptions, not add to them (“Okay, I want to say ‘store’, but I have to now find where the word is, and once I find it, I have to remember what came next”). That’s where muscle memory comes in – whether it is a picture-based system or spelling system. But typically stored phrase/word systems pay little attention to muscle memory (hint: if the layout is completely different for the person on their device at age 30 than it was at age 3, it’s probably not developing muscle memory). Anything that involves searching to find a word is a problem in this regard.

That said, I’m not the same as other people. My problem is that I need to say what I’m saying without internal or external interruptions (something very little literature discusses). Other people might have, for instance, word finding problems without working memory problems – for those people, I can see a well organized vocabulary, in a language system, as very helpful. But it still needs to be a language system, not just a list of words or a group of cartoon icons associated with words and phrases.

Finally, my biggest problem with most systems that don’t have complete vocabularies or which rely on stored phrases is that it becomes very difficult to tell other people about abuse or personal issues. How do you tell your girlfriend what you like in bed? Or how do you ask a doctor about birth control? Or tell a dirty joke? Or how do you say, “My mother (or speech therapist) is sexually abusing me?” when that person has access to your device too? You probably don’t want stored phrases available to everyone for these. There are some solutions to these – I believe any system that uses stored phrases needs to be user programmable, and there needs to be the capability to set up locked pages that nobody but the user can access (for instance, protected with a timed password). I’ve written software that does that and I’ve made sure to donate those ideas to the public domain – they are prior art and any vendor can implement them without concern over patents or copyrights. By allowing users programming access, you encourage experimentation with language and the communication of novel thought. That’s a good thing. What I hear from speech language pathologists (SLPs) is, “But the kid might screw up the programming.” Yep. That’s why you have a backup, and a good system lets you restore pages independently of each other and merge backups and the device’s changes selectively.

In closing, I don’t mean to say if you use stored phrases and they work for you that it is a bad thing. But I do think they are often used without a complete understanding of communication – since you understand how you communicate, feel free to use them when appropriate!