Facilitated Communication: Risk vs. Reward
Just because there may be risks, does that mean you shouldn’t try it?
Let’s be honest, as much as we know the efficacy of Facilitated Communication (FC), there is still a fair amount of controversy surrounding its practice, one of which is the risk of harm to typers or the their families from misuse by under-trained facilitators that could cause potential false communication. Just because there is a potential “side-effect,” does that mean that we should completely dismiss it and withhold the potential good that FC can bring to those that could benefit from it?
To illustrate this, let’s take a look at the Pharmaceutical industry.
Is the cure worse than the disease? Is it worth the risk?
Have you noticed all the new prescription drug commercials that have been appearing on TV recently, for ailments ranging from rheumatoid arthritis to narcolepsy? The one thing most of these commercials seem to have in common is that they take about 15-20 seconds to describe the product, then another 30-40 seconds for the narrator to describe all the warnings and potential side effects, at a speed that most humans can hardly comprehend.
For example, if the warnings and side effects noted on the website of the world’s best-selling drug, an extremely popular anti-rheumatic which brought in $9.6 billion last year, according to FiercePharma.com, was a bedtime story, it could scare a child awake for days.
First, there is a list of 20 things you should discuss with your doctor before starting to take the product, such as:
- Think you have, are being treated for, have signs of, or are prone to infection. You should not start taking [product] if you have any kind of infection, unless your doctor says it is okay.
- Live, have lived in, or traveled to certain parts of the country (such as, the Ohio and Mississippi River valleys, or the Southwest) where there is a greater risk for certain kinds of fungal infections.
- Have or have had heart failure.
- Are taking anti-diabetic medicines.
- Have recently received or are scheduled for any vaccines. All vaccines should be brought up-to-date before starting [product].
- Are allergic to rubber or latex.
- Are pregnant, planning to become pregnant, or breastfeeding.
Next, comes the side effect warnings:
[product] can cause serious side effects including: New infections or worsening of infections you already have; hepatitis B can become active if you already have had it; nervous system problems, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes; blood problems (some fatal); new or worsening heart failure; new or worsening psoriasis; allergic reactions; autoimmune reactions, including a lupus-like syndrome and autoimmune hepatitis.
Common side effects include: Injection site reactions, upper respiratory infections (sinus infections), and headache.
And after all that, they still have add the disclaimer:
“These are not all the side effects with [product]. Tell your doctor about any side effect that bothers you or does not go away.”
You would think that after all those warnings, no one would take this dangerous drug, right? So how can we explain why this is the #1 selling prescription drug? The answer is the concept of risk vs. reward. For many people living in constant pain, the “reward” of reducing that pain is well worth the “risk” of potential side effects.
Evaluating Risk vs. Reward
The same holds true for Facilitated Communication / Supported Typing. While it may be true that there is the chance for misuse or (most often unintended) harm by under-qualified or under-trained personnel, it is also true and undeniable that Facilitated Communication / supported typing has worked, and is working, to give a voice to thousands of non-verbal autistics, as proven and recognized by those who, through years of work and effort, have managed to gain the ability for independent typing with the need for a facilitator.
So ask yourself this, if you were an intelligent person locked inside a body that refused to allow to communicate with the outside world, or the parent or loved one of somebody in that position, what would you do? Would you deny the chance for a new life because there was a risk of possible “harm,” or would the “reward” of gaining the ability to communicate with the outside world outweigh the risk? The answer seems pretty obvious.
But, as with prescriptions drugs, one should know what they are about to take, and take appropriate precautions before beginning any treatment. Learn what the risks are, and how best to avoid them. Know who you are working with; the importance of a qualified facilitator cannot be over-stressed.
One way to do that is to contact a qualified FC Master Trainer in your area, who can either work directly as the facilitator or recommend a qualified trainer in your area. According to Syracuse University’s Institute on Communication and Inclusion, the leader’s in the field of FC research and training, qualifications to be considered a Master Trainer include:
- 10 years experience working with FC users
- Attending FC trainings ranging from introductory facilitator training workshops to an advanced Training of Trainers program,
- Developing the skill and experience to provide consultations and advice to families and individuals with autism
- Taking at least person from a non-verbal, non-communicative state to facilitated communication independent typing
So, is the risk of some possible, nebulous “harm” worth the reward of a more complete and fulfilled life? Only you can answer that question for yourself. The more prepared you are with valid, accurate information, the easier it will be to make the right decision.