Wednesday, November 7, 2012

Interview: Amy Sequenzia on Facilitated Communication

Amy Sequenzia is an autistic self-advocate and poet. She types using Facilitated Communication (FC). She talked with us about what FC allows her to do, and what she would like people to know about it.

What does Facilitated Communication (FC) mean to you? Why does it work for you?

FC is how I can make my voice heard. I can say what I think, how I feel and I can be active in conversations, instead of being a passive observer.

It works for me because nothing else did. My body can be very uncooperative and my mind can go from very active and unfocused to focused and calm -- and back -- in a very short time. It helps to have someone close to me for support, encouragement and to help me focus again.

Physical support is important when I get spastic and when my arms get too heavy for the “pull back” movement, for example. I also sometimes obsess with the keys and hit them repeatedly and aimlessly. A reminder, through a light touch on my arm, helps me focus on my typing again.

What FC method(s) do you use?

FC is also known as supported typing. This includes emotional support, the presence of a facilitator while the user types. The physical support serves to stabilize the arm, maybe slow down the uncoordinated movement, with the final goal of independent typing. That’s what I am working on.

Some people learned how to type without a facilitator. I think Carly Fleishman is an example. Others use the Rapid Prompting Method (RPM), created by Soma Mukhopadhyay to help her son Tito with communication.

Do you know people who use other FC methods, with similar success?

I know one or two people who used RPM but I don’t know much about each specific cases. There are many stories on the internet and on documentaries that are successful.

And many autistics are finding it easier to type. The technology, like apps and iPads, is very helpful.

When did you start using FC? Did your life change dramatically as a result?

I was eight years old. FC changed everything. I was able to tell my parents that I wanted to come back home from the school/institution I was living in; I could explain that I was afraid the ceiling fan was going to fall, and that’s why I did not want to go in rooms with ceiling fans; I told my mom that a teacher had called me “retarded” and the teacher apologized.

But soon I got very ill with severe epilepsy, hospital stays, and lots of medication. It took many years to get the seizures more or less under control, get used to the medications and being able to stay awake for most part of the day until I could practice typing again. It took a few more years until I met a facilitator willing to go back to the basics with me, allowing me some consistent work towards independence.

Do you think there are FC approaches that should be approached with caution?

I think facilitators and users must always observe the best practices. This is a guide to make sure the user is not being influenced by the facilitator and that the amount of support is the right one.

What do you consider some widely-held misunderstandings about FC?

That it does not work. Every criticism and negative comments I have seen talk about the facilitator always guiding the user’s hand. This is not true. FC is not for everyone but it works for many. And if it is how a person chooses to communicate, this should be respected.

Another misunderstanding, or misinformation, is that there aren’t any studies validating FC as an effective method of communication. The Institute on Communication and Inclusion (ICI) website has this documentation available. Douglas Biklen and all the others, who have been working on making sure everyone gets the proper training, are very open about what works and what doesn’t.

And there are several users becoming independent typers, and still keeping their writing style.

TPGA tends to approach therapies and methods for autistic people from a skeptical, evidence-based approach, and we have covered FC from this approach on our site and in our book. Specifically what kind of research do you think would provide answers to those who remain skeptical?

Read the material provided by the Institute website: soeweb.syr.edu/centers_institutes/institute_communication_inclusion/Research/authorship_and_controversy.aspx

As far as I know, none of the people who write negatively about FC - portraying users as not the real authors of the typed text - have actually met users who now type independently or with very little support. I think that if a skeptical person could see up close how Sue Rubin, Larry Bissonette, and many others type, they would not be able to say FC does not work. It worked for them and it changed their lives.

It changed my life too.

Being skeptical is okay, as long a person is not dismissive. We all have our own journey and judging each one of us without knowing where we’ve been and how we got where we are is unfair. And, for many of us, the journey continues.

What is one thing you'd like our readers to know about your use of FC?

I just hope they do not dismiss me as not my own person with my own voice (or assume that my facilitator is not aware of the best practices). Typing, for me, is not a simple thing. I need to focus and try to make my body and my brain work together. Sometimes I can’t do that. Sometimes I need a lot of physical support, sometimes I need very little. I can type a few words independently, although this does not happen very often, yet. I always need emotional support and encouragement.

I was evaluated and observed while I typed. I was asked questions that my facilitator did not know the answers to. I think more facilitators, everywhere, would be important for us because our personal style would be recognizable, always.

I hope readers can be curious about FC without being dismissive, and I hope my voice is valued as my own.