AAC Voices

What did you think of the book?

2/24/2024

When I first started virtual teaching of learners who use AAC (most of whom also have neurodevelopment disabilities) lots of parents (and students) were surprised when I asked, “what did you think of the book?” after every book we read.

For speaking folks it is usually the first question we ask when talking about a book, “oh I just read The Women by Kristen Hannah.”

“Really? How was it?”would be a usual book readers conversation starter.

However, for most alternative communicators that isn’t a question they hear. They are read to or read books themselves and are asked comprehension questions about books, but no one ever asks what they thought. Many parents were shocked to realize they don’t ask their AAC using kid if they liked a book and why.
Most of my students have been with me long enough now that they answer, “what did you think of the book” before I ask it. Often times it is mostly, “like” or “I like it” as a response. Some kids I push a little further and ask them why and others often give apt reasons. We just wrapped up learning about World War Two and many books were tremendously sad or brave or unfair. Many of my students noted these things.

To anyone who doesn’t work with or know a child who uses a speech device this might not seem like a big deal but, trust me, it is. People underestimate my students; they infantalize my students; they commit ongoing educational neglect against my students. No one expects them to comment on the bravery of Anne Frank or the sadness of a child exposed to the Hiroshima bomb dying after making 1000 paper cranes or to comment that it isn’t fair how Jackie Robinson was treated.

They definitely don’t expect my students to further comment something along the lines of, “makes me think, my old school, seclusion, segregation, not fair”. So it is important for the world to know that my students DO comment on books and make deep and important connections with them - even books that are considered to be “beyond” them. I’m not saying every child makes every inference and deeply connects with every book - but typical kids don’t do that either.

I am saying that my students deserve to learn about Anne Frank and the holocaust, and Pearl Harbor and Hiroshima, and Jackie Robinson and Josephine Baker because all of these topics are things we expect everyone to know about. They do not deserve a (whole freaking) lifetime of Brown Bear, Brown Bear and The Very Hungry Caterpillar (you would not believe how common this is - preschool books their whole lives). They deserve to be asked their opinions and to be taught how to share their opinions. They deserve teachers who want to hear their opinions.

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Step In

12/7/2023

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When you see a child having what you view as an “attention seeking behavior” you have two choices. You could decide you can “fix” that behavior and step away and ignore them. Or you could think, “they’ve got my attention, now what do they need?” If you chose the second one you will likely find they are seeking a connection for some reason - perhaps to get another need met, perhaps out of fear, perhaps due to a lack of skills to get the connection in another way. Then you can step towards them, co-regulate and show them how to express their needs safely and without fear of judgment.

Both choices on your part have long term consequences beyond that moment and that interaction. Ignoring may work, if your definition of “work” is only that it decreases the “attention seeking behavior”. Let’s be clear, most of us were trained to take this view. This view is rooted in ABA and oversimplified views of antecedents, behaviors and consequences. It is not backed by neuroscience or attachment theory.

Being ignored can lead to feeling unheard, it can lead to social anxiety, it can lead to sadness and depression, in short, it can be traumatizing. Ignoring tends to be called, “limited caregiver responsiveness” in developmental and attachment research. That research is clear that having needs ignored and letting distress be unattended to is detrimental.

There is an idea that you can ignore a behavior and not the individual, but this just isn’t true. You are either ignoring the individual while they are engaging in the behavior or you are creating cognitive dissonance by acting as if the behavior isn’t happening while you interact. Ignoring someone who is distressed and expressing it in unpleasant or even dangerous ways sends the message that their distress doesn’t matter, that in order to get their needs met they must pretend to not be distressed. We forget that the individual likely doesn't have the skillsl to better share their distress - or they would be using them.

The other option is to step in to co-regulate by recognizing their distress, joining them in that space as a calming presence, and working with them to reach a place of less distress. When you do this you teach them that they and their feelings are valuable. They feel seen and heard. They learn that they deserve to feel safe and regulated. They also learn how to begin to regulate themselves. When you pair this with learning coping skills at times when they already feel calm and regulated they begin to learn to recognize their emotions and use tools to stay in control even when distressed.

So many of the children I work with, who are all non-speaking and use speech devices, and often have other disabilities, were in educational settings that caused significant educational and emotional (and way more often than anyone would believe physical or even sexual trauma). In their previous settings they were ignored in times of distress. This is nearly universal in their experiences. When they became distressed they were ignored by those who were supposed to be caring for them. Oftentimes, the only way to end the ignoring was for them to become regulated without assistance AND for them with some demand (such as sitting quietly or doing a task). Being ignored in those times taught them either to be louder, more demanding and more aggressive or taught them help was never coming and left them passive. Or it left them vacillating between the two.

Chronically being ignored just further ingrained a belief that their distress would never stop or that they should just accept, without struggle or complaint, their own distress while being sure to not let it bother anyone else. Ignoring is gaslighting in that it creates a false reality of whatever the person in power says is reality. Ignoring is detrimental because it becomes internalized that if someone doesn’t pay attention to you then you are doing something wrong and you need to change, creating constant anxiety. Ignoring is traumatic.

For individuals who are non-speaking and who have other disabilities, these behaviors are often the only communication they can access at that moment of distress. This may be because they don’t have the physical tools to communicate, because their communication partner doesn’t understand their communications or because at that moment they don’t have the physical or emotional ability to use the tools they do have. They often need someone who knows them well to step in, acknowledge their feelings, assist them in decreasing their distress and assist them with communicating in a calmer and safer way. Ignoring doesn’t do any of that.

Professionals and providers of services to individuals with disabilities, as well as caregivers, must begin to challenge the paradigm of assuming our first job is to “fix” the behavior of people who are distressed. We have to let go of the overly reductive idea that when an individual “acts out” in a way that gains “attention” we must avoid “reinforcing the behavior” by not responding. When we allow ourselves to live within that construct we are limiting our ability to teach new skills; we are taking all of the power from the individual and using it to deny them connection and co-regulation; we are removing their agency and replacing it with trauma. It is difficult to let go of the God like position of deciding how to fix and change another person and, instead, be present in their distress, help them achieve better regulation and help them grow into a place where they can better navigate their feelings and the ups and downs of being a human being. But it is essential.

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FC/RPM/S2C?

12/3/2023

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How to spot pseudoscientific practices of Facilitated Communication, Rapid Prompting Method and Spelling2Communicate in highly edited documercials:

1) The vocabulary used by the proponents of these systems and in the propaganda often differs from that used in the AAC field in that they like use “type”, “typer”, “spell”, “speller”, “board”, “letter board”, “stencil”, “keyboard” instead of AAC, AAC user/AAC device/system. AAC users, of course, get to self-define and chose how they wish to be referred to, I am not talking about that, I am talking about the speaking people who are trying to sell these programs.

2) There are never any long camera shots showing the individual typing, instead there are short edited bursts of filming, with the camera focused on the hands

3) There aren’t full body shots showing the individual in the center of the frame communicating without someone touching them

4) The keyboards/letter boards/stencils/ipads are held aloft by someone other than the individual. They often move about as they are held in midair. Sometimes you can clearly see the board movement anticipating the next letter or the individuals hand/finger staying still as the board moves under it (try drawing a box around them in editing software or dry erase marker to check)

5) The individual is never given any personal space/bodily autonomy when they are using their keyboard/letterboard/stencil/ipad

6) Someone is holding the individuals hand/arm/shoulder/shirt or other part of their body as they “spell” (or in one video some is holding the end of a stick and moving the child like a marionette)

7) The individual may not look at their target, even peripherally, while they touch it (or aim to touch it). It is actually next to impossible to hit a letter on a board held aloft if you don’t look (if an AAC system is still and static and the user is experienced at it they might be able “touch type” without looking but usually that isn’t the case in the propaganda videos). Try it. You can't ‘touch type” without looking on an unstable keyboard.

8) The individual often has their wrist limp and their finger dangling, it is very difficult to type like this or they sort of repeatedly peck their arm/hand without much aiming, try it out on a still keyboard and one held aloft, it’s very hard.

9) The individual rarely, if ever, has had any literacy/grammar instruction. Usually they went from severe educational neglect to spelling and writing in full sentences immediately (note: some 6-14% of autistics are hyperlexic so this alone isn’t telling, but S2C and other programs insist all autistic don’t need quality literacy instruction, this is a blatant lie, look into Science of Reading), there maybe excessively poetic language even for simple yes/no questions.

10) The “facilitator” doesn’t confirm letter by letter or word by word or even at all, as is recommended, they also don’t need to write down what letters are touched to understand, often despite the “speller” not using capitalization, using spaces or punctuation. Try it, it is really hard to decode something letter by letter in this way, especially quickly. (On a personal note my sister had a brain injury later in life and used an AAC book. When she spelled she would get so frustrated with how hard I found it to decode as she pointed that she would spell dyslexic backwards - I didn’t know was what she was doing for years!)

Some other serious concerns about autonomy include that facilitators/helpers ignoring multi-modal communication of wanting a break, to move, to stop etc. Often times, especially in RPM and S2C, ABA based compliance training techniques are used such as restricting movement, timers to force sitting while they are “spelling”, and other means to force the individual to use only condoned means of “communicating”. Rarely do you see the individual demsontrating high regard of or ownership of their board/ipad.

Photos taken from:

📸 Watch this video on Facebook https://www.facebook.com/share/v/pZ2E4xxwdFgHKCyw/?mibextid=rOHFeQ

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Revisiting the Adapted AAC Prompt Hierarchy:

11/10/2023

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Seven Years Later

Seven years ago I wrote about and created a new prompt hierarchy, designed for use with those who have apraxia. Soon after Shelane Neilsen collaborated with me to create a visually more appealing Adapted Prompt Hierarchy. Quickly translations began appearing, at first with or Shelane's my consultation and, eventually, without it. Eventually new versions appeared, usually copying my premise, and often times my exact language, sometimes with credit or consultation and most times not. Sometimes these were sold by others. They are making money off of work I have deliberately only offered for free. Work I've only offered for free because it is so vital to what we do as AAC caregivers and practitioners.

The Adapted Prompt Hierarchy came into being because of my experiences observing a traditional, ABA based hierarchy used with AAC learners. Those prompt hierarchies always started with an adult who had something specific that they thought the user should say. It was assumed the adult was always correct in their choice of what should be said and no other response was acceptable. As a means to that end the prompts had the end goal of encouraging, and if that didn't work, forcing the individual to say what they adult wanted them to say. Such procedures ignored the humanity and human rights of the AAC user to be in charge of if, when and what they communicate. These procedures, especially physical prompting, could create learned helplessness. Furthermore, AAC users are taught that the AAC system doesn't belong to them, it is merely a tool that someone else is in charge of, that they can be pressured or forced to use to say anything someone else wants, regardless of their desires. This may make the AAC system aversive, which will limit the success of it's use.

The major ways this Adapted Prompt Hierarchy for AAC is different from other prompt or cue hierarchies are the following:

Aided Language Input (aka Aided Language Stimulation, Partner Augmented Input, modeling) is the umbrella under which all other intervention occurs. It is a setting event for learning AAC.
This model focuses on maintaining the humanity and autonomy of AAC users. It safeguards AAC and communication as a choice.
It suggests use of a pause of a minute or more. Many prompt hierarchies suggest mere seconds. This is often not enough time for AAC users to process language, formulate a response and use their AAC system to say that response. The amount of wait time should be based on the individual AAC user. Data can be collected to determine the average wait time needed for many different types of responses to determine how long to wait.
This prompt hierarchy completely eliminates hands on prompting - including partial, full physical, hand over hand and hand under hand. No one should be touching an AAC user or their system while they are communicating. Ever. There is a myth that hand under hand prompting is acceptable if the user consents and can withdrawn at anytime. However, any physical prompting sends the message that the adult knows better than the child what to say and teaches the child to accept being physically manipulated to communicate. This is what we want to avoid. There may be some exception for Deafblind AAC users, but even then physical prompting is discouraged.
Other prompt hierarchies focus on getting an AAC user to say what the adult wants them to say, but this prompt hierarchy focuses on helping the AAC user figure out what THEY want to say.

As well as their being a plethora of research supporting Aided Language Input as a primary intervention in AAC and a recommended best practice, there is also research indicating passive observation is better than using physical prompting in individuals with intellectual or developmental disabilities.

Additionally, seven years ago I had begun to work with a number of individuals who had been assaulted at school. I had to wonder how being forced to communicate specific messages using hands on prompting (be it hand over hand or hand under hand) created an easier target for abuse. Especial since these individuals were also subject to hand over hand prompting for other tasks, physical restraints and they were given rewards for allowing others to do things they found invasive or for allowing their bodies to be manipulated. Certainly, hands on prompting, compliance based education and therapies and the inherent ableism in forcing a disabled person to do undesired activities was grooming disabled children and adults into being easier targets for abuse.

In my original post, I went into great detail about the studies that show that individuals with disabilities are abuse at exponential rates compared to non-disabled individuals. The statistics have not gotten any better in seven years:

Adults with developmental disabilities are at risk of being physically or sexually assaulted at rates four to ten times greater than other adults. (From Sobsey, Dick (1994). Violence and Abuse in the Lives of People with Disabilities The End of Silent Acceptance? Maryland: Paul H. Brookes Publishing Company.)
Sixty-eight (68) to eighty-three (83) percent of women with developmental disabilities will be sexually assaulted in their lifetime, which represents a 50 percent higher rate than the rest of the population (Pease & Franz 1994, Warick, Jason (1997).
According to one study in 2000, approximately five (5) million crimes were committed against persons with developmental disabilities in comparison to 1.4 million child abuse cases and one (1) million elder abuse cases. (From Joan Petersilia, Ph.D., When Justice Sleeps: Violence and Abuse Against the Developmentally Disabled.)
More than ninety percent (90%) of people (both male and female) with developmental disabilities will experience sexual abuse at some point in their lives. Forty-nine percent (49%) will experience ten or more abuse incidents. (Valenti-Hein, D. & Schwartz, L. (1995). The Sexual Abuse Interview for Those with Developmental Disabilities. James Stanfield Company. Santa Barbara: California)

(https://shorturl.at/rwyV7)

Certainly, when the hierarchy was first shared seven years ago there was a backlash. Some caregivers, but mainly paraprofessionals and professionals, could not conceive of a world where what an AAC user communicated was up to the AAC user. Talking about abuse against those with complex communication needs and developmental or intellectual disabilities caused great upset. There was a lot of push back about the rates of abuse reported being untrue, despite experts saying they were actually low. Many practitioners doubled down on using hands on prompting. Slowly, but certainly some practitioners have begun to see the risk in using physical prompting and compliance based programming. Most and more parents and other stakeholders are demanding their child's interventions NOT be based in compliance training and instead support neurodiversity. Using the Adapted Prompt Hierarchy supports neurodiversity in many ways. It supports communication autonomy by allowing the child to decide if, when and how they communicate. It supports physical autonomy by avoiding any hands on prompting. It allows for extended wait times of a minute or more to allow neurodiverse brains time to process what is happening and form a response.

The Adapted Prompt Hierarchy for AAC is designed to create autonomous communicators who make their own choices surrounding what they wish to communicate, while offering them supports in choosing what to say,

Please contact us if you wish to translate this into another language. We will be happy to assist.

Download file here.

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How Many Buttons?

11/4/2023

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One of the frequent things we see in the field of AAC is a struggle to determine how many buttons per page to start with on a new AAC system. Though there is a myth that one should start small and have a very limited system at first this is no longer best practice, best practice is to consider the users ability to "Perceive and Access" the buttons on the system.

Perceive and Access
Start with as many buttons, the maximum, the user can perceive and access (often times called "see and touch", a brilliant approach from the folks at AssistiveWare, but perceive and access is more accurate as it includes visual needs, fine and gross motor needs, memory and working memory needs, alternative access and more).

This means determining the skills needed to perceive the buttons including vision and visual scanning for most users, but also memory and working memory (especially for those using indirect selection like switches) and hearing for those using auditory supports for access.

As perception issues are considered, access is also considered. How will the individual make selections? Will they use direct selection like their finger, a stylus, a joy stick, eye gaze or head tracking? Will they use switches? What supports will be used for the selection method? Do they need the button they are about to select to enlarge or change color? Do they need an auditory preview or auditory scanning? If switch scanning will be used how many options are they able to recall during a scan? Can they do row/column or group/item scanning? Are they able to use their cognition and executive function to make selections while they hold their whole message in their head? Overall, how many buttons per page can they access - remembering that less is not necessarily easier! Less buttons per page means more navigation. More navigation increases the need for executive function skills, working memory, attention span and patience of both the user and communication partner.

(One place to start is watching the individual use other technology or do other activities. Can they navigate YouTube? Find the X to close the video? Visually scan over selections and make a choice? Yes? Then chances are you can go pretty small with the buttons, which means more buttons per page.)

When you base the size of the system on what they can perceive and access you meet visual and fine motor needs because you chose based on criteria that includes what can be seen and what can be selected. Once all these factors have been considered and tried a decision should be made to use as many buttons as they can perceive and access WITHOUT considering if they know the words and symbols on the buttons, if they can combine words or anything else beyond perception and access. They will learn the symbols, words and the system as a whole because we will teach it to them.

Like all children the AAC user must be exposed to exponentially more words than they can currently "say" as they learn to communicate. In the case of AAC this is done using aided language input (aka modeling). They need words to prove they can use words. This is important to understand as the old belief was that they have to prove they can use words to get more words added to their communication system. That myth's time has passed. You also need words to model. You can’t model what’s not there! We might hide/mask words, use "progressive language" features or similar during learning activities (though I don't), so that we can have a smaller number of words during the activity, but then return the system to full access. Using these features ensures the buttons stay in the same location as buttons per page changes and a new motor plan doesn't have to be learned for each increase.

There are some other things to think about when you decide to give a user a limited number of buttons per page:

you limit the language they can use and since language is about connection there is less to use to connect with others which minimizes motivation
you are attempting to mind read to know what they might need and since no one can mind read you will be wrong
you make assumptions about their ability and, worse, others seeing the limited vocabulary start to perceive the user as unable to use more language and doubt their cognitive abilities, stigmatizing them
you cause them to need to learn a new motor plan everytime you increase the grid size, limiting progress
you make words transactional as the student must earn the right to have words
“proving ability” becomes next to impossible since you need words to prove you can use words
you are allowing the needs of the caregivers/stakeholders to outweigh the needs of the user as often concerns about "too many buttons" are based on the erroneous idea that if the stakeholder is overwhelmed then the user must be

Remember, when you choose how many words someone "deserves" you are choosing the size of their world. Choose carefully!

See also:
AAC through a Language Lens
https://blog.mycoughdrop.com/aac-through-a-language-lens/
Choosing a Grid Size by AssistiveWare
https://www.assistiveware.com/learn-aac/choosing-a-grid-size
Grid Sizes by Liberator AU
https://shorturl.at/eoFW9
Prepare for AAC Use by Fluent AAC
https://www.fluentaac.com/prepare-for-aac-use
What is beginning AAC? by Jane Farrell
https://www.janefarrall.com/what-is-beginning-aac/

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FrankenSystems

10/22/2023

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FrankenSystem is the name for an AAC system which has been highly edited or customized by a stakeholder (caregiver, teacher, ABA practitioner, therapist, etc) without regard for a set of internal rules, visual cues and standards that exist underlying robust AAC systems.

Such systems tend to lack consistency between buttons, pages and sections. The visual cues (color coding, fonts, font styles, button shapes) built into most robust systems are ignored. There is usually a mix of various symbol sets, clip art and photos without a logical basis for when/what purpose they are used. There may be an over reliance on photos based in the debunked idea of a “representational hierarchy” in AAC. These photos can lead to over or under generalization and use of the system as a photo album instead of communication system. Images used may be blurry, difficult to distinguish from the background or lack clear meaning.

A FrankenSystem will use the same symbol on different buttons, on different pages, to speak different messages so that the user doesn’t understand what will happen when they activate the button. It may use navigational icons, such as next page, go back or home, on communication buttons and not just navigation buttons.

FrankenSystems may have a mix of colors, buttons sizes and images which are unpleasant to look at, at best. They are often aesthetically displeasing, and, not to put to fine a point on it, ugly.

Please note that AAC users, especially adult AAC users, who customize their own system may do so anyway they wish. FrankenSystems are imposed on AAC users, not created by AAC users for themselves

Many people may not understand the work that went into creating the leading AAC systems (like PODD, WordPower, Unity, LAMP WfL, Proloquo, Proloquo2Go, Avaz, etc). Linguists, SLPs, educators, AAC users and stakeholders and many others spend years creating these systems. They typically have very specific and meaningful reasons for why things work they way they work. Most systems use the latest research in their designs to ensure the systems are based in what works best.

As people who unwittingly create these FrankenSystems often have no exposure to the design and rationales lying behind the vocabulary set up they don’t realize what they are doing when they over customize the program. AAC System creators/designers and sellers MUST do a better job informing their customers how and why their systems are designed the way they are.

Beyond that, these individuals who do this over customization are just working too hard! They would like be better off if they did basic customization of people, places, preferred items/things, personal information, and relevant slang and then watched a movie, had a glass of wine or otherwise rested so they can use their energy on the things that help AAC users become more competent - like aided language input (modeling) and literacy instruction.

A FrankenSystem is often:

created by very well meaning but inexperienced person(s)

created by someone who desperately wants to DO something to help, but who does not fully understand what they are doing

created by a person who does not understand the system they are adapting

created by a person who thinks the vocabulary system included is “too” something (too hard, too many words, too hard to see)

attempts to replace core and content words with phrases and full sentences without regard for when and why it is appropriate to do this

attempts to turn a robust communication system into a stimulus response machine or into a means of requesting only, with an over abundance of nouns (“noun town”)

may be created over years by multiple people who do not communicate with each other (too many cooks in the kitchen)

We should avoid creating and implementing a FrankenSystem because:

it disrupts a consistent system that will become more useful and important as the AAC users skills grow

it is often designed to make the AAC user appear very fluent before they have mastered the skills and at the same time they limit the ability to gain those skills

the AAC user will have difficulty knowing what a button will do when it is activated

the motor plan and ability to rely on motor memory is often disrupted
the color coding and other cues to navigate the system are often inconsistent making it hard to use

once the system it is based on becomes out of date or the device/app is taken off the market the user will be without the system they know - many adults who use AAC end up in this position!

it is unpleasant to look at, especially for the long term

How to avoid creating and implementing a FrankenSystem:

always search for words before you add them, make sure you aren’t adding content that is already there

before you make serious changes or program more than a word or two have conversations with knowledge people and other stakeholders including the user

keep a shared document or notebook with all stakeholders that has an explanation of the system and its internal rules, design, visual cues and features, so that any changes being made can match the system

What to do if a user has a FrankenSytem:

determine if the system meets their needs and if stakeholders are satisfied with the system. If it is used well and everyone is satisfied you may not need to make any changes or may seek to move the FrankenSystem closer to following the standards of the robust system it is based on (if it is based on one), by editing the system

consider offering and modeling the original robust vocabulary while still having the FrankenSystem available . This can be accomplished in many systems but having a button in each vocabulary to switch user or profile so the different vocabularies and easily be toggled back and forth (much like we do for bilingual AAC users). Over time the user will likely move more and more towards the robust system, but return to the customized system when needed.
train the AAC user and stakeholders on the design, internal rules, visual cues and rationale of the original robust app to aide in their understanding of why it would be a better choice, use visual helpers and quick start guides as support for them

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Presume Potential

6/24/2023

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Something that happens to me all the time when I talk about what my students can do is people assume I only accept the “high functioning” kids. They ask questions about how what I am teaching is "advanced" and their students would not be able to do it. It infuriates me!

Well folks my students couldn't do it before either! My students didn’t have these skills. I taught them. Now they do. That is how teaching works.

I take any student who shows up. The only child I actually turned down for my home school academy I turned down because we would not have been challenging enough. I have never, ever turned down a child because I didn't think they could learn! When we say "presume potential" this is what it means. No matter where you perceive a child to be "functioning" you KNOW that they are capable of learning, of progressing. And as a teacher you do EVERYTHING possible to both meet them where they are AND raise the bar gradually. If you are setting the bar so low they could trip over it I am not even sure you can call yourself a teacher!

The truth is I am a last resort. If a kid is “easy” or “high functioning” they aren’t going to end up working with me because the school/hospital/etc will be fine for them. It's the kids who are deemed "hard", "challenging", "difficult" and (the one label I hate the most) "low" who end up with a private provider like me, usually after years of educational neglect. And that educational neglect comes from low expectations and assumptions of inability to learn. This oldie, but goodie graphic from Practical AAC holds true. Change your perceptions of the individual and you change everything!

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"Spellers" Propaganda

5/7/2023

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There is a new dangerous, propaganda movie about a cousin to the debunked and dangerous Facilitated Communication method going around. It’s called “Spellers” and is based on Spelling2Communicate which is essentially the same thing as Rapid Prompting Method.

Facilitated Communication is holding the hand, arm or another part of the body of a non-speaking person and “helping” them communicate by pointing to letters. In Rapid Prompting Method (RPM) and Spelling2Communicate (S2C) a helper holds the letter board instead of the body of the non-speaking person. Evidence shows, overwhelmingly, that neither of these methods is safe because inevitably the person doing the holding, accidentally or on purpose, becomes the communicator. This has been proven in study after study since the 1980s. It is set, peer reviewed and accepted science.

Knowing this, plus our knowledge about interrupting bodily and communication autonomy and it’s impact on increasing vulnerability to abuse means we should never, ever touch a non-speaking person or their communication system while they are communicating. Ever. (There are very rare exceptions for Deafblind people.) Repeat NEVER TOUCH AN AAC USER OR THEIR AAC SYSTEM WHILE THEY ARE COMMUNICATING. There is even a study showing passive observation leads to better results than physical prompts! So hands off!

These methods are associated with horrific stories of false abuse allegations ripping apart families and actual abuse when non-speaking people are believed to be consenting to sexual activity using these methods, such as published in a story in Slate Magazine. (To be clear non-speaking people can and do consent to and have fulfilling sexual lives. However, if consent is given using these methods it must be questioned, for safety sake.)

All of these methods have been condemned by major groups like ASHA, ISSAC and others.

The only “study” Spelling2Communicate proponents offer is an incredibly flawed study that used head mounted eye gaze tracking to supposedly prove spellers look at what they touch before touching it. This study had no control group. We do not know what someone typing without someone holding up their spelling board and moving it (be it by accident or on purpose) looks like on eye tracking. If we don’t know what confirmed literate individuals in a control group look at the study has no basis. How can we possibly tell if someone is looking first before touching without a control? Beyond that flaw, the study ignores the evolutionary imperative for the human eye to look at movement and relative movement. Such flaws make the study useless.

Let me be very clear. Non-speaking people have an absolute human right to communication. All non-speaking people should be assumed to be capable learning to understand and communicate AND given the interventions and tools they need. The presumption of potential to read, write and communicate is essential. As a field we must start there. But we cannot end there. We cannot assume that without instruction in reading, writing and spelling students will magically communicate through hands on assistance or manipulation of their communication board. These debunked programs and methods stem directly from our failure to properly understand and intervene with children and adults whom are non-speaking. Our mistakes and utter failures caused this mess. If we eliminated educational neglect of non-speaking students and insisted every single child who needs AAC gets AAC, along with intensive and consistent, science based interventions to learn to read, write and communicate we wouldn’t be here.

But here we are. I grieve for the people being subjected to these methods which are unlikely to work though proponents use the rare success story to convince desperate parents and caregivers to commit to bogus methodologies. I also grieve for all the kids who aren’t being given communication and literacy intervention and instruction because they are trapped in the tyranny of low expectations that create the educational neglect that is rampant.

I wish someone would make a movie about some of the many, many AAC users who became AAC users through scientific based interventions. The power of communication is undeniable. But, we have better ways than these questionable at best methods. We need to spread the word and the science to all so that every voice is a heard voice.

Links
Stop FC and RPM
Facilitated Communication. Org
ASHA Statement on RPM and S2C
ISAAC Statement on FC, RPM, S2C

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Presume Potential in Action

11/29/2022

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As AAC implementers there is a lot we have to know and think about and rolled into that is the hope we must have. We must believe that our students/clients/children will grow beyond where they are right now. This is what is meant by presume potential - have hope - not a static hope, but an active hope that adjusts and grows and changes. We believe that full, active, intrinsically rewarding communication is coming.

Today I taught an AAC skills class. The students and their learning coach, usually a parent, were picking an operational AAC goal to focus on for a few weeks. I mentioned in passing that working on not clearing the message bar after each word or phrase so that the user can make a fuller sentence might be a goal. Some of the learning coaches spoke up and at least three of my students automatically delete/clear each word they enter in the message window, despite knowing they need to add more words. The coaches all agreed the issue was created by intense drilling by an ABA practitioner on a goal of pressing clear. Now these AAC users will need to dedicate time and energy to unlearning this bad habit that is preventing fuller communication.

This is just one example of a skill that is taught, often drilled, into early AAC users which must be untaught as the child grows. Other examples include, introducing oneself to known people, saying hi to the same person repeatedly, and using navigational short cuts like the “eat” button to get to the food folder in TouchChat 42 and 60 Basic instead of going to groups, therefore inserting the word “eat” where it isn’t needed in a sentence. I even have one client who, as a child, was believed to overuse “I want” so the word “want” was removed from her system. Though it was added back in, she still, years later, never says “want”.

This is the opposite of the most common issue, which is an instructional focus on manding (requesting) and labeling (tacting) to the exclusion of all other functions of language. AAC users miss out on the natural development of multiple functions of language at once when they are provided only with the means to request and/or request and label. This makes their conversations stilted and deprives them of the social closeness which comes from communicating for other purposes. Therefore we again have to reteach a skill that could and should have been taught correctly in the first place.

When we are choosing AAC skills to work on we must think about if and how that skill will be used in the future. If the skill is mastered will it need to be unlearned? Ask excellent adult AAC users if the skill is useful or meaningful. The adage in AAC has always been we create a system for today and tomorrow. Along with that we must teach skills for today and tomorrow.

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Symbol Supported Text?

5/27/2022

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Symbol Supported Text, sometimes called Symbolated Text, is the practice of adding picture symbols above or below each word or phrase in text based materials meant to be read. (It does not apply to symbols in AAC systems.) Here are some examples:

As you can see symbols from a variety of companies are placed above or below the written text. If you look at the symbols alone, as a non-reader would do, it is very difficult to know what is being said. The first example might be read as “bird home bird cage give house” to an unfamiliar person. The second might be read as “bad person broken arm lots people down Florida city, Florida”. The final might be read as “left class bus road city take bus”. The symbols do little to nothing to improve understanding. They also distract from reading the actual text.

There is essentially no research indicating that this practice improves the understanding of these texts by individuals with intellectual or developmental disabilities (IDD) or by individuals with IDD and complex communication needs (CCN). In fact there is study that shows typical adults cannot guess meaning from supporting symbols. Most “evidence'' supporting this claim has been created by the companies which sell products to create symbol supported text or which sell products featuring symbol supported text (Example of such companies include Widgit, Symbol Inclusion Project, Tobii Dynavox Boardmaker, Slater Software, News2You. Vendors like those on TeachersPayTeachers such as Breezy Special Ed, A Special Kind of English, and Winter’s Wonderful Workers will often cite this commercial research when told their products are detrimental to learning literacy.) There is also specific research, which is done by neutral parties, saying that the addition of symbols doesn’t increase comprehension. Still, the practice of symbol supported text remains very common in special education, despite years of evidence that it is not beneficial.

Many teachers, therapists and caregivers make anecdotal claims of symbol supported text increasing comprehension but the research just isn’t there. However, Symbol Supported Text can be a lot worse than just the time and money wasted on adapting or purchasing materials which do not increase understanding. Symbol Supported Text, in fact any image or symbol paired with a word, has been shown to either have no impact or to be detrimental to children learning to read. Studies have looked at programs that explicitly pair carefully chosen symbols with a word and have found that when the symbols are removed from the word children do not retain the ability to identify the word. Children who learned symbols paired with text did not attend to or attempt to decode words when the symbol was present and could not read the word when the symbol was removed. As one can imagine, haphazardly pairing words with symbols would be even worse for learning to read, especially when large groups of words are presented simultaneously in a manner which is visually cluttered, and symbols might change meaning regardless of the word with which it is paired. (See the example below where the same symbol is used for “falls” and “lands”.

,If you are interested in reading relevant, non-commercial research, I suggest starting with this article by Erickson, Hatch and Clendon https://bit.ly/3yXY0k6, specifically the section entitled “Picture Supported Text: An Example” and Comprehensive Literacy for All by Erickson and Koppenhaver, especially the section entitled “Research Brief: Assistive Technology” https://amzn.to/3wJkIL8. Additional research information can be found at the end of this article.

Unfortunately, many professionals and caregivers refuse to consider the significant evidence that symbol supported text is detrimental to learning to read because they do not consider their students as candidates for literacy. This ableist view comes from a tyranny of low expectations and a lack of knowledge about how to teach literacy at all, but especially to learners with IDD and/or CCN. It is horrifying to say it aloud, but professionals who use symbol supported text often do so because it makes them feel they are doing something when, in reality, they are refusing comprehensive literacy instruction to their students. Instead schools and professionals should be fully committing to literacy instruction for all learners, regardless of perception of cognitive ability. As Dr. David Yoder says, “No student is too anything to be able to read and write.”

It is difficult as experienced professionals to face what this means. If we have not taught literacy and have only used symbol supported text and done listening comprehension we may feel guilty and defensive when someone suggests that we should have been teaching literacy all along and that we shouldn't have been using symbol supported text. It is a terrible feeling to think maybe we failed our former students. Facing that guilt is incredibly difficult. However, we can remind ourselves that we did the best we could with the information we had at the time. We must be brave enough as professionals to learn new information, evaluate it and incorporate it into our practice. As the old saying goes, "know better, do better". We are capable of changing course and making sure the students in front of us from this day forward get literacy instruction.

In some countries, such as the United Kingdom and Australia, a common practice, sometimes a legally mandated practice, is called “Easy Read” materials. These places have created guidelines on how to make text based materials more accessible to those with IDD and/or CCN as well as people with other disabilities, English language learners and the elderly. For example, guidelines for the United Kingdom can be found here and here for New Zealand and here for Australia.

Special educators, therapists and others can draw from the Easy Read guidelines and emerging research on Easy Read to help them adapt text in ways that promote both comprehension and learning to read. Some of the big ideas are to use clear, simple language, to limit each sentence to one concept and consider having only one concept per section or page, to use images and symbols to illustrate these concepts (rather than matching picture symbols to words), and to use specific formats.

Simplify the Text

Simplifying text means using easily understood vocabulary and simple sentence constructions to present important concepts. Simplifying text works best when teachers are adapting text based materials to create an entirely new material. This is most useful when there is a large gap between the individual's comprehension skills and the complexity of the text. One technology tool available for this is Rewordify. Rewordify is a free tool allowing you to enter/copy & paste text into the program and then lower the reading level and identify vocabulary to be simplified. This process of simplifying text is not likely to be as effective for picture books where modifying the text would change the experience of the book.

Simplify the Format

The format of text can be beneficial or detrimental to comprehension of that text. Use of 14+ font in a clear font such as arial can make text more accessible. Text size can be increased if needed for those with visual or attentional needs. It is recommended to have one concept or idea per sentence or line. In some cases this may be one concept or idea per page. The website Tar Heel Reader and the app Pictello by AssistiveWare are both good examples of tools which help adapt materials to present one idea or concept per page. Easy Read guidelines recommend consistent placement of images either on the right or left side of the page if there will be multiple images on a page, with the correlating text next to it. Layout should be clear and simple, as well as consistent, across sections or pages.

A Word about Picture Books

Picture books are the perfect teaching and engagement tool exactly as they come. Depending on the level of book you choose it may have images and simple text perfect for working on literacy and comprehension skills. When we glue or tape in picture symbols or symbol supported text we are likely not improving comprehension, we are detracting from the perfection that is a picture book including the images and text, and we are limiting the ability of students to focus on letters and words and attempt decoding text.

AAC User Specific Suggestions for Picture Books

There are some specific recommendations for shared reading of picture books with AAC users/individuals with CCN. The first thing to do is to read through the picture book and identify the core words or other specific vocabulary you will model using aided language stimulation on the individual's AAC system. Words to be targeted can be underlined in pencil or listed on a post-it note on each page. It is vital not to tape or glue in strips of symbol supported text as that is not shown to aid comprehension and is likely to be detrimental to learning to read.

Educators and Therapists may also wish to create a visual support to be used with the book. There are many ways to do this, such as creating a document which notes occurrences in the story in sequence for individuals to check off as they happen. Pictured below are visual supports for three picture books. Each has the title and then, moving right to left, top to bottom, symbols or images about the sequence of events in the book. Students can check off each box as it occurs in the story and/or use the visual support to aid them in answering comprehension questions or retell the story. Symbols or images on a separate visual support is preferable from gluing or taping in symbols to go with the text.

Another option is to have cards or visual displays with pictures or picture symbols of important characters, occurrences and vocabulary in the book to hold up or hand around as you need. These can be combined with sensory items for learners who respond well to sensory materials or who have visual disabilities.

Similarly, you can have a card of picture symbols or a chart of story elements to use as you read to guide the students in thinking about what the elements of that specific are. Visual schedules of the steps in a reading activity can also be used to help students know what is happening and what will happen next.

Graphic Organizers are another tool which can be used to increase comprehension. Commercially made graphic organizers are available in many formats and designs or professionals can create their own. There are many types of graphic organizers for reading comprehension. Story Maps are one tool to help in fiction picture book reading. Students who do not yet write can use their AAC system to dictate how to fill in the characters (use core words like girl or bear), setting (time and place), the problem and the solution in the story. A variety of options are available for describing characters or comparing and contrasting characters or books. Summarizing graphic organizers following a format of "someone", "wanted", "but", "so", "finally" are also enticing to learners who use AAC to complete with in a group setting. For non-fiction picture books KWL or Know, Wonder, Learned charts can be created so students can list, via their AAC system what they already know about the subject and what they wonder at it it; after reading they can add what they learned from the book. All of these activities, based around graphic organizers, can be adapted to match the skills of a wide range of learners and increase understanding of fiction stories or the topic of a non-fiction book, teach the skills for understanding how books work and encourage use of AAC systems.

Finally, Smart Charts are a tool that can be used to support professionals and paraprofessionals in modeling language through aided language stimulation on AAC systems or as visual supports for AAC users to find words in their systems. Smart Charts can be created for vocabulary in picture books and stored in the books or displayed when the book is read.

More information on aided language stimulation can be found online and in the book Comprehensive Literacy for All by Erickson and Koppenhaver. One part of aided language stimulation during shared reading is to comment, ask and respond (CAR). Using this technique will increase comprehension of the text as well as help develop AAC skills, and are much more reliable than symbol supported text.

Adapting Stand Alone Text
Writing Style

Write in short, simple sentences.
Use simple, clear language (write as you would speak)
Have only one idea or concept per section or page.
Check complexity and reading level with Rewordify https://rewordify.com

Vocabulary

Define difficult or specific vocabulary.
Have separate printed or digital images/symbols to show/pass around when you reach targeted or difficult vocabulary
Use numerals not numbers written out. (1 not one)

Formatting

Use a clear font that represents letters as they are taught. For example the letter a being a circle and line.
Use a size 14 or larger font.
Arrange text to be justified to the left.

Images/Symbols

Keep photos, draws or symbols clear and easy to identify
One use one image/symbol per idea or concept
Remove background from photos
Use relevant and age appropriate images
Do not put symbols over each word or phrase. Do not put symbols over difficult to decode nouns or other words. Do not use abstract symbols that are difficult to identify without training.

Adapting Picture Books

Do not adapt or add symbols to the text in the picture book. You may have separate cards or displays of related symbols to show as you read aloud.
Underline or otherwise mark words that should be modeled using aided language stimulation in an AAC system as you read.
Books can be adapted for durability and physical access in a variety of ways. For example “page fluffers” can make it easier to turn the pages https://www.unr.edu/ndsip/english/resources/tips/page-fluffers
Use “smart charts” to help find vocabulary in AAC systems. https://saltillo.com/downloads/chat/hands-on-tools-strategies-for-enhancing-collaborative-aac-support-teams-resources-for-organized/Smart%20Chart.pdf

References and Resources

Benson-Goldberg & Erickson, 2020, Graphic Symbols: Improving or Impeding Comprehension of Communication Bill of Rights? Assistive Technology Outcomes and Benefits Volume 14, Spring 2020, pp. 1-18 Available online: www.atia.org/atob

Blischak, D. M., & McDaniel, M. A. (1995). Effects of picture size and placement on memory for written words. Journal of Speech and Hearing Research, 35, 1356-1362.

Erickson, K.A., Hatch, P. & Clendon, S. (2010). Literacy, Assistive Technology, and Students with Significant Disabilities. Focus on Exceptional Children, 42(5), 1 – 16. https://literacyforallinstruction.ca/wp-content/uploads/2020/05/Literacy_Assistive_Technology_and_Students_with_Si.pdf

Farrell, J Symbol Supported Text: Does it Really Help?https://www.janefarrall.com/symbol-supported-text-does-it-really-help/

Fossett and Mirenda (2006) Sight word reading in children with developmental disabilities: A comparison of paired associate and picture-to-text matching instructionResearch in Developmental Disabilities Volume 27, Issue 4, July–August 2006, Pages 411-429

Hatch. P. (2009). The effects of daily reading opportunities and teacher experience on adolescents with moderate to .severe intellectual disability. Unpublished doctoral dissertation. University of North Carolina at Chapel Hill.

Poncelas & Murphy (2006) Accessible Information for People with Intellectual Disabilities: Do Symbols Really Help? Journal for Research in Intellectual Disabilties 14 March 2007 https://doi.org/10.1111/j.1468-3148.2006.00334

Pufpaff, L. A., Blischak, D. M., & Lloyd, L. L. (2000). Effects of mod- ified orthography on the identification of printed words. American Jounial on Mental Retardation, 105(\), 14-24.

Rose, T. L., & Furr, P. M. (1984). Negative effects of illustrations as word cues. Journal of Learning Disabilities, 17(6), 334-337.

Samuels, J. (1967). Attentional processes in reading - The effects of pictures on the acquisition of reading responses. Minneapolis:University of Minnesota. (ERIC Clearinghouse ED014370).

Saunder, R, J., & Solman, R, T. (1984). The effect of pictures on the acquisition of a small vocabulary of similar sight-words. British Journal of Educational Psychology, 54(?\), 265-275.

Singer, H., Samuels, S. J., & Spiroff, J. (1973-1974). The effects of pictures and contextual conditions on learning responses to printed words. Reading Research Quarterly, 9(4), 555-567.

Singh, N. N., & Solmon, J. (1990). A stimulus control analysis of the picture-word problem in children who are mentally retarded: The blocking effect. Journal of Applied Behavior Analysis, 23, 525-532.

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