Saturday, May 13, 2023

It's Not Just One

It's not just one  --- person

While most of us start out using Facilitated Communication (or any of the newer variations of typing/spelling to communicate) with just one individual, it usually doesn't take long to realize that this particular individual is not the only one who can benefit from this alternative form of communication.  In my case, I started out working with a young girl whose parents were eager to give FC a try. She let me know in very short order that several of her friends at school were also very smart, and she wanted me to try using this new method with them as well. I tried, they proved her right, and the fun began.

Here we are, over 30 years later, and there is a brand new movie out --- "SPELLERS" has now been watched by millions and features eight young people who use a letterboard or keyboard to answer questions and share their thoughts. In the intervening years, many other typers have been featured in books or films, many have given presentations, some have graduated from college, and there can be no doubt that it isn't just one person who has been helped by some form of spelling or typing.

It's not just one --- area of disability.

Rosemary Crossley started using FC with Anne McDonald in Melbourne Australia, and expanded the method to others with severe Cerebral Palsy (like Anne).  Doug Biklen visited the facility where Anne was living and brought FC back to the U.S., where he and others expanded its use to students with autism who were nonspeaking.  

At the present time, the emphasis is still on nonspeaking autism, but many individuals with Down Syndrome, along with many who have been labeled as "severely cognitively impaired" (or some variation of this unfortunate label) have also proven that they have much to say and have many abilities that have been untapped and unrecognized.  Ever so slowly, we are doing away with the idea of IQ scores or functioning levels, and instead learning to always "presume competence" regardless of diagnosis or outward appearances.

And it's not just those who struggle with spoken language.  I have personally used FC with several individuals who speak quite well, but don't use the spoken word to communicate effectively.  They might have a few favorite topics they repeat with anyone willing to listen, but can't or don't answer even the most basic questions and don'r really engage in back and forth conversation. Using FC seems to slow them down, and help them to focus enough to carry on a meaningful exchange with a conversation partner.

It's not just one --- method

I am thrilled to see what is happening with the newer forms of spelling or typing to communicate.  Soma Mukhopadhyay introduced what has come to be known as RPM (Rapid Prompting Method) and several years later S2C (Spelling to Communicate) was born.  Call it letterboarding or supported typing --- what all of these methods have in common is a belief in the ability of those who struggle to use spoken language.  This is where "presume competence" enters the picture.  Throw out all our old ideas of mental retardation or intellectual disability and see what happens if an individual is given a means of communication that works for them. Recognize that neuromotor differences cause a variety of problems with motor performance, which is critically tied to the use of oral speech. Provide needed supports, training and practice, and you might find that these individuals know much more than any of us ever suspected.

It's not just one --- reason for rejection and controversy

Acceptance of some form of typing or spelling as an alternative form of communication might seem like a no-brainer for those who are nonspeaking, or minimally speaking, but the opposition has been intense. 

Established interventions for autism and related conditions are more deeply entrenched than we might realize.  Almost all are based on some form of behavior modification, and almost all have become highly profitable businesses.  Often, ABA (Applied Behavior Analysis) is the only intervention parents hear about, and often the only one that is covered by insurance plans.  Prescription medications are similarly covered by insurance or Medicaid, and might be the first thing physicians suggest when parents request help with their young child with autism.

In the early years of FC, some individuals who were given a voice for the first time in their life used that voice to report some form of abuse in their lives (present time or sometime in the past).  Others wanted to share messages that were highly spiritual in nature, or seemed to be evidence that they were able to read the minds of their communication partners or parents.  Either/both of these situations quickly became problematic, especially in school settings. 

FC was criticized most of all because it involves the physical support of a partner or facilitator.  But the fact that both RPM and S2C carefully have eliminated this component by working on independent pointing to letters from the very beginning, with NO physical touch involved, and are still being rejected by most schools and the American Speech/Hearing Association (ASHA), leads me to believe that in reality the biggest obstacle is that professionals in this field have a very hard time accepting that they might have been wrong.  They simply cannot see these individuals as intelligent, they can't admit they might have underestimated them, they can't allow for the changing paradigm that is needed here.  Whether the resistance is due to ego, or possible financial losses, it is our vulnerable friends who need access to an alternative means of communication who are being silenced.

We all need to hear what these amazing individuals have to say.  They have been locked in silence far too long.According to SPELLERS - the movie - there are some 30 million nonspeakers in the world.  Most are still waiting to find their voice.