On Facilitated Communication

 

Firstly, some background on Facilitated Communication (FC) or Partner Assisted Typing (PAT) which is a method originally used to assist people with severe communication disabilities in pointing to letters on an alphabet board, keyboard or other device so that they can communicate. The person with disability, with little or no speech, is referred to as the communication partner, communicator or typist. The assistant or provider offering physical support to the person with disabilities is called the facilitator. The facilitator holds or gently touches the communication partner's elbow, wrist, hand, sleeve or other parts of the body while the communicator points to letters of an alphabet board, on the keyboard of a voice output machine or an iPad.

The work of Rosemary Crossley raised awareness of the issue of communication in those with little or no speech, and the setting up of the DEAL Communication Centre in 1979 heralded the rise of FC as a method for communication for the disabled, and Douglas Biklen, then professor of education from Syracuse University who later worked with Rosemary Crossley also popularize this method across the United States and elsewhere.

According to the experts on FC, movement and coordination difficulties e.g., dyspraxia, present challenges in communication in autism and other disorders. The role of the facilitator in assisting the communicator is physical, helping to better manage movement and coordination problems such as initiation, perseveration and uncontrollable arm movements, such as hand flapping or tremors. Rosemary Crossley also thinks that physical support from the facilitator provides increased proprioceptive input for a better sense of control in pointing and typing.  In addition, the facilitator provides verbal prompts and moral support. With most communicators, the facilitator's belief in their ability to communicate is also essential for the success of the technique. I like to think this is also

true in neurotypical people in the sense that they usually speak with those who they feel comfortable with or have a good relationship with, otherwise, there are barriers to communication as well 

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To give people some idea of the process of FC, I like to say something about my experiences with Matthew Wilson, one of the most skilled and knowledgeable facilitator I've had the good fortune to meet. I learned to type with support under Rosemary Crossley, at the age of 9 when I was in Grade 3. After several years of many hours of practice per week, I became more skilled and was able to type with more people, and with less support. Around the age of 15, in Year 9, I met Matthew Wilson at a seminar run by Communication Rights Australia, the advocacy body for people with little or no speech, on Facilitated Communication. Matt was the presenter, and I sensed that Matt was very switched on at this first meeting. At that time, he was working as Senior Speech and language Pathologist at the Queensland equivalent of Department of Health and Human Services (DHHS). 

Later, I heard that he had become my friend Joshua's facilitator. Joshua also learned to type with Rosemary Crossley about a year before I did, and later moved up to Brisbane for high school. Mum and I went to Brisbane at the end of 2011 when I  was in Year. 10 to visit his family and another friend. Joshua had finished high school by then, and was attending Uni doing a journalism degree. Mum wanted to find out

the path undertaken by Joshua as my VCE was fast approaching.  We met with Matt again at Joshua's house, and this time, I also typed with Matt's facilitation. 

Apart from Rosie (Rosemary is Rosie to her clients), I have never seen any facilitator more skilled. It was my first go with Matt, and he was able to get me to communicate as well as I could with other facilitators I am familiar with. During the session lasting perhaps one hour, he alternated between Joshua and me.  Joshua

and Matt were like such a great partnership, talking and swapping jokes which really put me at ease. Then Matt facilitated me using shoulder and then quickly moving on to back support. With Matt, I was able to type things to the same level as with more familiar facilitators who used arm or shoulder support.  Matt also gave us some tips on how to improve our typing. 

During my Year 11 and 12, Matt support letters for me in application for special consideration for assessment and such. Below is an excerpt from his letter of support from the point of view of movement difficulties. His knowledge and expertise on FC has helped me better understand the process involved. I wished I had his level of skills with people who use FC for communication because I feel that with knowledge comes control, and I have always wanted to have more control over my typing. 

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"It is frequently seen that text generated by people when facilitated by less experienced facilitators is not as ‘advanced’ or ‘coherent’ as when facilitated by someone with more experience in facilitation or well known by the person typing.  It is almost as if there is a balancing act between the motor/execution and cognitive components of movement.  My thoughts are, with less experienced facilitators, a person typing has to focus more on control of the motor components, which makes it harder for  person to focus on the cognitive components of a task, analysis, formation of sentence, flow or coherence of the typed work, etc. The focus on motor control may not be anywhere as significant with a skilled (and/or familiar) facilitator, hence freeing up more capacity to focus on the cognitive components. You see this when people first start fading. The further back you go, initially people struggle with the motor control, which inevitably seems to impact on the complexity of what is typed, until the faded support becomes easier motorically for the person.

• Could consideration be given to a more gradual introduction to the assessment process? Rather than a scenario of needing to formulate a response that is discussion based generative text, could the assessment process be eased into by multiple choice assessments. Multiple choice assessment will have less demands and provide some retrieval cues.

• Best facilitator should be used for assessment

• Obviously a level of knowledge on the topic, or at a minimum a level of insight into language complexities is useful. Of course, this would be sensed as enabling a situation for influence by some. From my perspective, there are some people who need language supports, i.e. they may lose focus mid-sentence and either go off on a tangent, a stereotypic string of words or a favorite topic. I’ve noticed that this can be triggered by many things – sensory distraction, fatigue, a particular letter or a string of letters, or a work.  Unless the facilitator is cued in to the person’s language, and provides supports through clarification or feedback, this can impact on the quality of typed work."

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I would also like to use another example on the importance of FC as a means for communication. The following  is a excerpt from a posting on the internet about a high-functioning autistic man who has speech, but loses it when he has a meltdown. Being a computer nerd, he designed an innovative program as an app for people around him when he loses the ability to talk so that he can get the support needed during his panic attacks. I think what he has done has also helped people like me who have little or no speech because we are permanently on panic attack mode, but for us, the ability to hand someone a mobile phone with an app may not always be there because of our

sky-high anxiety levels.  This is why FC or PAT is essential for non-verbal auties like me. Despite what people have questioned about the validity of FC, without this means for communication, life is a living hell because we are not fully human without the ability to communicate effectively. 

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No one knew how to help him during a panic attack, so this autistic man made an app to tell them.

 By Thom Dunn

The next time you're on the verge of a panic attack, just give your phone to a stranger, and the Emergency Chat app can instruct them how to help.

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Please note: This piece was written using identity-first language, which is sometimes preferred by people with autism and other conditions. You can read more here about the differences between identity-first and people-first language.

Have you ever felt totally overwhelmed by everything around you and just needed the world to stop for a moment?

Hey, it happens to the best of us.

 

GIF from "Community."

But for many people who fall on the spectrum of autism, these kinds of experiences can be all too common.

Autism spectrum disorder (ASD) refers to a range of neuro-atypical conditions typically characterized by impairments or difficulties in social, developmental, and occupational behaviors.

Autistic people often have to work extra hard to interpret social cues and communicate with others, which, well, can be really frustrating.

Think of your own worst memory of the stress caused by miscommunication. Then imagine pretty much every single social interaction you have being just like that — totally outside your internal comfort zone.

 
GIF from "Suburgatory."

You can see how easy it can be for an autistic person to be overcome by the sensory overload surrounding them every day from normal human interaction and communication alone.

People have different ways of responding to stress, such as panic attacks, a loss of speech, or an ability to move. For autistic people whose behavioral patterns are already considered atypical, these signs might be even harder to identify.

While it's nice when people try to help in those moments, sometimes their questions make things worse.

Especially when you can't give them the answers they need to help you.

Sometimes, when you're stressed out, the absolute last thing you need is for someone to ask you how they can help. It's a nice gesture, of course, but when you've reached a certain point in your panic attack, you probably don't have the brainpower left to articulate your needs.

And sometimes — particularly for autistic people — you actually, literally, can't talk.

It's not that Autistic people are trying to be difficult. It's not that they're being stubborn or prideful or refusing help. When your body is too overwhelmed with stress and adrenaline, sometimes you just cannot fulfill the functions someone is asking of you.

Even if you really, really want to.

That's why Jeroen De Busser created the "Emergency Chat" app — for those times when verbal communication is just not an option.

Jeroen is an autistic computer science student. He shared with me by email his memory of a particularly harrowing meltdown in which he went completely nonverbal.

The situation was further exacerbated by the presence of his friends, who despite their best intentions, did not know how best to help him — and of course, he was unable to tell them himself, which made everything even more frustrating.

 
GIF from "Community"

This experience inspired Jeroen to create Emergency Chat, a text-based app that displays personalized instructions on how to assist or handle an individual during a meltdown or panic attack, instead of wasting precious time in trying to parse through verbal communication. The app is currently available for Android phones, but we're told that an iOS version is in the works.

Here's what Emergency Chat looks like:

 

All you need to do is hand your phone to someone and the app will tell them how to best help.

Here's how Jeroen describes the user interface:

 "It has a base text that explains to the person you gave your phone to that you can't use speech and want to use this app to communicate. 

Both the title and text can be adjusted in the settings to be whatever you want the person you give your phone to to know."

The app then provides a bare-bones chat interface, that lets you communicate with the people trying to help:

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Although the default screen is set for autistic people, it can be customized for any number of physical, mental, or emotional needs.

While most of the Emergency Chat's 500+ users have relied on its default functionality for autism, one savvy user has customized the app to help with their tracheostomy, in case there is ever a problem:

 

The best way to help one another is to listen, and things like Emergency Chat improve communication for everyone.

I know that deep within our hearts of hearts we're all good people, and we genuinely want to help each other. But I also know that even when we mean well, we need to be sure that we're helping people on their own terms, the way they want and need to be helped.

This is particularly true when it comes to autistic people. Just because they function differently from the majority of people doesn't mean they don't function at all.

What an app like Emergency Chat does is give autistic people, or people with PTSD, or people with tracheostomies, and so on, control over the way the world around them tries to help them function when they lose their ability to speak. It saves them the stress and anxiety of wondering what will happen to them, whether they're with friends or in a strange environment, and it ensures that they can ask for — and receive — the help they need.

In short — it's a win for everyone involved.