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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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:

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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.

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!

 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

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• 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