Amy Sequenzia, a non-speaking Autistic self-advocate, poet and writer agreed to an interview with me. Amy is someone whose work I have been following since I met her, this past spring. Her powerful book of poems, My Voice: Autism, Life and Dreams can be purchased by contacting Amy ‘here‘. Amy’s writing and poems are regularly featured on Ollibean.
AZ: Hi Amy. Thank you so much for agreeing to this interview. You describe yourself as a self-advocate. Can you tell us how that came to be?
“I think it was in PA when I had my first real contact with a group of autistics who where typing to communicate (The Lonesome Doves). That was in 2003 and I realized I could be speaking up for my rights to more people. After that I began writing poems that were a little bit about my life. Then I decided to write to, and meet with, legislators; was encouraged to write to newspapers and later for blogs.”
AZ: You’ve described how people have spoken about you when you were present, as though you couldn’t hear them or understand them. Can you talk about what that feels like?
“It feels like you don’t count as a whole person. It is rude and frustrating because I can’t respond or will not walk away. It makes me sad when people who love me do it anyway. Some people even continue to do this after being reminded that I can hear, type and think.”
AZ: Do you have memories of that happening when you were younger, before you could communicate through typing?
“Yes and I would get angry, frustrated, sad. Sometimes I would cry, sometimes I had a meltdown.
Sadly, it still happens.”
AZ: Were there things you did, sounds you made, actions you took when this happened?
“I answered in the question before, but I have to add this: I don’t have meltdowns anymore. But I need to have my support person with me to make sure I can express myself, if I want to. Some people still don’t get it.”
AZ: How did you learn to communicate through typing?
“It was a long and emotionally draining session with someone from the Institute on Communication and Inclusion (I think it was called FC Institute back then). I was 8.”
AZ: There’s been a great deal of negative notions and even so called “studies” done regarding facilitated communication. Can you address this idea that FC is not an accurate or meaningful way of communicating?
“It is how I communicate, it means it is how I can have my voice heard.
FC is a process, with clear steps and a final goal – independence. It is not easy and many factors play a part in the process.
As far as I know, from all the people who say FC is a hoax, none of them has ever interviewed a user who became independent, or has acknowledged the many studies, including double-blind studies done by different facilitators with different users. All this is documented.”
AZ: For those people who have only read the negative views on FC, is there anything that might make them understand what you experience when you try to communicate without FC?
“I am misunderstood. My face does not always show how I feel and I have other disabilities that prevent me from being more pro-active. My body can be stubborn. Without FC I don’t really participate in the world.
But it is important to know that sometimes I choose not to type and other times I might be too overwhelmed or tired to type.”
AZ: Have you ever had a bad facilitator?
“Yes. When I was in school, sometimes people would try to facilitate with me without any information about the method. Some would guide my hand; others would not offer resistance or the right support. I could not type like this.”
AZ: How did you cope with that?
“Sadly, I did not do anything. There was no encouragement from some and with others it was as if I was a piece of entertainment. I felt disrespected. FC is a lot of serious work. I had to wait until I met someone who believed in me and was committed to follow the best practices.”
AZ: How long did it take you to learn to type?
“I took only the first session for me to find out that I could type. Typing is also a matter of practice and trust. Today I am more confident and I can type fairly well with trained facilitators after a few minutes. If I know they will follow the best practices and nothing else interferes (like a seizure or spasms), I type really well, even if I don’t know the facilitator well.”
AZ: Is there anything you’d recommend to parents of nonverbal children who are hoping their child might communicate through typing and/or FC?
“Give your child every possible chance to communicate. Don’t believe in every article or every “expert” who says FC does not work. Go to the Institute on Communication and Inclusion (ICI) and question them yourself. Being skeptical is ok. That’s why dean Biklen and the others at the Institute do such a good job documenting everything.” (Click for the link to the ICI website)
AZ: My daughter Emma is just learning to read, write, and type. She is extremely resistant however. I’ve been told this is often the case. Were you resistant to communicating in the beginning?
“No. I wanted to leave the school/institution where I was living, so I had to make it clear. But it can be scary to have all the power to say things that can change everything.
I don’t know Emma. Maybe she just needs some time.”
AZ: Do you remember what it was like in the beginning for you? Were there things that could have helped you more that what was done?
“I wanted to type. I could choose food, clothes, anything. Then I began typing my thoughts. Maybe Emma is not interested yet. It has to be her choice, at her own time.”
AZ: What is your living situation like now?
“I live with friends. It is their house, but it is our home. We call it life sharing. I have state funding which is not good, especially in Florida. But because my friends respect me, I can have a life I can be proud of, and happy with.”
AZ: Did/do you have a mentor? If yes, can you talk about that experience and relationship?
“My mentors are people who show me the many possibilities of my life. They don’t always know that.”
AZ: I know several people consider you extremely important in their own process of learning to communicate and in their life. They think of you as a mentor. How has mentoring others changed you/helped you?
“I hope it has helped them. I still need mentoring. It is a good exchange of ideas, experiences, encouragement and support. It feels good to be considered important in someone else’s growth. It is lovely.”
“Thanks Ariane. This was a good interview. And thank you for being supportive of autistic voices.”
Thank you so much Amy for being willing to answer all my questions. Please help me thank Amy, everyone!
You do not ever have to ask twice for thanking Amy from me! Amy and her support person helped my Emma (and me) more than they can ever imagine. Amy is wise. Maybe it is from all her years of observation, but assistance to my daughter was and still is profound.
*Waves Hi Paige! Hi Emma!
Excellent! Thank you both for sharing this.
Amy comes out of the interview as such a wonderful person, so willing to share her experiences, such a deep and thoughtful thinker. Hers is a perspective and voice, even though non-verbal, that needs to be heard by everyone, not just in the world of autistics, but in the greater world where next to nobody understands what it must by like to hear and understand everything, to have feelings, emotions, needs, but be unable to express them fully.
When I read your interview with Amy I think of the pebble cast into a still pond that causes ripples, ripples that reach out to distant shores where they touch unknown persons, persons in need, persons who, like Amy, are trying, waiting just to be heard.
Thank you Amy!
Thank you, Amy! I really enjoyed reading your interview, and am in awe of what an amazing person you are!
Ok, I am really confused at Facillitated Communication.
I know very little about it. The story I saw on 20/20 featured a young, non-verbal woman with autism. She had used this for years, her parents went around the country talking about it. Yet, after the accusations came out, and they were in court? She couldn’t identify letters, much less use the device or type on her own.
I am ALL FOR ANYTHING that would help my daughter communicate. But she can’t identify letters, either. How would something like this help her? She currently does a few signs, and says a few things on her Alt Chat. That’s it. No language at all.
It’s so hard not to lose hope. That’s why I’m so grateful to have found Ariane and you all.
Angie, I understand how frustrating it is to receive all kinds of conflicting information. What I can tell you is that Amy is not the only non-speaking Autistic to use FC. If you go to the web site link provided, give them a call and speak to someone over there. My guess is they will be able to help you and answer your questions far better than anything I might say.
Douglas Biklen is brilliant and a Dean at Syracuse University. He wrote the book, which if you haven’t gotten yet, you must, “Autism and the Myth of the Person Alone
Thanks for all the beautiful words.
Angie, what ariane said is important and the people at ICI are very nice. TV reports like to generate debate and they even ignored the institute’s offer of a clarification of mistakes and omissions in the piece (I don’t know if it is the same you saw)
I don’t know your daughter but this might help: you can take her hand and guide it on a letter board or key board, spelling the letters and the words. If she shows interest and if she does not know the letters, it is a good way to learn. I used to laugh when listening to the word “bonk”. It would be a start for me if I needed encouragement.
A friend of mine learned how to type using FC like this. His story is in the book “Reasonable People”.
Don’t feel like it will never happen. I will be thinking about you and I will try to help
I am many things. A labler is not one of them. I try to be an enabler–allowing people to be themselves. I am a ‘yote. I am pleased to meet you Amy. Ariane introduces me to nice people. You’re words are good words to live by.
Amy – old ‘yote is my twitter buddy and punster friend, he’s also a wonderful poet. So there, ‘yote, just gave you a whole bunch of “labels” you anti-label enabler you! ;D
I’m more of a virtual food fighter, possessed picture taker, absent-minded rambler. But those are self sought titles.
O, I meant to say if Amy reads this comment and wants to discuss poetics at anytime, I do enjoy poetic discussions!
Ariane – I am absolutely going to check out their website and call them. Has Emma ever used the communication method? I know she sometimes types. Wasn’t today Emma’s first day at the new school? How did it go?
Amy – thank you for your advice and I will for sure try this. Risa’s communication device has a keyboard on it. Right now, her only interest is using my Nook to play “Do de Rubber Duck” over and over again! But I am absolutely going to start working with her on this, and telling them at school to do it, too.
I really appreciate you thinking of us and trying to help. Trust me when I say I’ll be taking you up on it!
No Emma has never used FC as taught by Syracuse, however when Emma was learning to read, write and type, I had to hold her wrist to help her form the letters of the alphabet. We worked together on just doing that for at least a month, with me sitting next to her and supporting her wrist. Sometimes if she was having a difficult time I would hold my hand over hers and direct her so that she could form the letters properly. Over time I backed off until I was gently supporting her wrist, then her elbow and finally she no longer required any support at all. The same is true for typing. We used a similar method. This was the way I was taught and it was very structured. I was given detailed instruction and had to submit videos of my working with her to make sure I was doing it properly. This method also helped her not make mistakes, something she is very sensitive to and would hit herself when she made one, so this method removed that possibility. I can tell you without hesitation, Emma now types and writes completely on her own without me touching her or even sitting near her.
It is unfortunate that FC has been given such biased and negative coverage. The deeply engrained prejudices regarding those who are disabled continues as evidenced by some of these reports where they seem to have a position they are interested in covering and not particularly interested in examining and finding out the truth. Peyton Goddard writes about her experience with a facilitator who made her write things she wasn’t saying in her book – i am intelligent. It is horrifying to think that such people exist, sadly they do and the horror is they are not only betraying that one person, but an entire community.
What an amazing interview! Thank you Amy and Ariane! Great job! 🙂
Amy and Ariane, you are both awesome.