Tag Archives: Amy Sequenzia

The Problem With “Scientific Studies” and Typing With Emma

Posted on November 19, 2012 | 9 Comments

Last week the first part of my interview with Peyton and her mother, Dianne Goddard was published on the Huffington Post.  Click ‘here‘ to read it.  This portion of the interview was about the horrific abuse Peyton experienced at the hands of two people who were related to her and meant to care for her.   The interview is an astonishing example of forgiveness, but a couple of the commenters questioned whether Peyton had, in fact, written the answers to my questions herself and presumably those same people also doubted whether Peyton was the true author of her book, i am intelligent.  Disbelief, despite the fact that before the book was conceived, Peyton wrote about her abuse and it was confirmed by the two people who abused her.  An abuse that was done in secret; an abuse so horrific it defies the imagination; abuse that went on for a very long time and was known by  none, other than Peyton and those who abused her.

Last Friday I decided to devote a post to FC, you can read it ‘here‘ and while none argued against FC and those who use it here on this blog, one of the commenters on the Huffington Post piece wrote, “I am just relating the controlled scientific studies on FC.  I am saddened that people chose to publish personal information and discount scientific data to mislead the public.”  As I read this I thought, but therein lies, at least part of, the problem.  This IS personal to many, many people.  For those who use facilitated communication it is the difference between being able to communicate and being in this world in a way that is not available to them otherwise.  It means no longer living a life in silence and feeling isolated, it means connection and it can mean the difference between being institutionalized or not.  For those people and their families, FC makes all the difference in the world.

As I reflected on all of this and the swirling debate surrounding the legitimacy of FC as a “valid” form of communication I wondered about the term “scientific study”.  What exactly constitutes a scientific study, what is the criteria for such a study, what are the guidelines?  I found this site from the USDA and there’s this on Judging Criteria for Scientific Research and this, Understanding Scientific Studies where I read, “The scientific process is a road of discovery. It is the process of gaining knowledge about the universe through the observation of measurable evidence. Contrary to what many people  believe, this ‘road’ is not  a straight, smooth motorway: researchers may take different directions of exploration, going down routes that twist, turn, and sometimes even backtrack or come to a dead end, before the facts are uncovered. Even then, the facts uncovered may be only part of a larger, partially understood phenomenon, which requires further research  before we come to  more complete answers.“

To return to the question of FC there is much more to be learned.  The studies that have been done to date -  Investigation of authorship in facilitated communication, Contested Words, Springlink an Evaluation of 8 Studies, Facts About Facilitated Communication, A History of Facilitated Communication and A Validated Case Study of Facilitated Communication show the wide array of “scientific studies” and the resulting conclusions which range from, FC is a hoax to Facilitated Communication is a valid form of communication.  Reading any one of the above links I’ve provided makes a compelling case for or against the use of FC.

And yet, for those of us who have personally seen FC used by people like Tracy Thresher, Larry Bissonnette and countless others I can say without a doubt that they are indeed speaking for themselves.  I can recount my own experience with my daughter who learned to write and type with hand over hand support that was gradually lessened with time as she showed a greater ability to write and type independently.  Today she no longer requires any support at all, types with her two index fingers, sometimes without looking at the keyboard and hand writes unaided as well.  However there are people who, because of their physical disabilities, cannot do this, may never be able to do this, and so for them, a facilitator will always be necessary.

For those who question the validity of FC, by all means, read the many studies, educate yourself.  As Amy Sequenzia once said to me, “it’s okay to be skeptical.”  However in the case of FC there are enough “scientific studies” that conflict and in the end only prove that some people are communicating using FC and their lives have been transformed as a result and others have not been as fortunate.

For any who are interested, here is a video of Peyton using FC that she and her mother sent me.

This was a typed “conversation” I had with Emma yesterday.

Me:  Hey Emma let’s type together!

Em:  Happy birthday der Emma.

 Me:  Em, your birthday is in January, but you are thinking about your birthday now, right?

 Em:  Happy birthday.

 Me:  We’ve been talking about your birthday a lot lately.  It’s exciting.  We are planning to go to a hotel with a swimming pool for your birthday and then to Elite Gymnastics for your birthday party. 

 Em:  And take a taxi.

 Me:  Yes, we will take a taxi!

 Em:  To go to that now howtel.

 Me:  Right!  We will take a taxi to a hotel and we will spend the night there.  All of us will go there together.

 Em:  Yes,  we will take a taxi to go to that new hotel has a pool.

 Me:  Yes.  We are going to find a hotel that has a pool.  I know that’s what you want the most; a hotel with a pool.

 Em:  Go in your room.

 Me:  Then what?

 Em:  Get are batigsot on take the elvalr up to the rof and go swimming in the pool.

 Me:  Yes!  We can go to our room, get our bathing suits on, take the elevator to the pool and go swimming in it.  That’s a great idea.  That sounds like so much fun!!

FC users Larry Bissonnette and Tracy Thresher (with his facilitator Harvey Lavoy) at the 2012 Autcom Conference 

Tracy types during the Q & A at AutCom Conference 2012

 

Movie trailer of Wretches and Jabberers

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Is Facilitated Communication a Valid Form of Communication?

Posted on November 16, 2012 | 30 Comments

I’ve wanted to write about facilitated communication for a while now, but am particularly motivated to do so now because of something that happened recently to Amy Sequenzia.  I interviewed Amy in September.  To read that interview on the Huffington Post click  ’here‘.  Last week Amy was interviewed by the Thinking Person’s Guide To Autism specifically on the topic of facilitated communication, you can read that interview ‘here‘.  A commenter questioned how it could be determined who, in fact, was typing Amy’s answers, Amy or her facilitator.  Amy then wrote a post published on Ollibean titled:  I, too, want to understand.  Amy writes, “I want to know why some people choose to discredit one method of communication, without learning the reality of the method and the people who benefit from it, instead of supporting broader use of all methods of communication, helping to create accountability and improve best practices.”

I decided to ask Douglas Biklen who is Dean of the School of Education at Syracuse University and author of one of my favorite books, Autism and the Myth of the Person Alone (Biklen, 2005, NYU Press) about all of this.  I asked Doug how he responded when people express skepticism regarding FC.  He said, “Ariane, on our website you will see a review of some pretty substantial studies that confirm the validity of facilitated communication. You can find these at this location:
http://soe.syr.edu/media/documents/2011/6/Research_Supporting_Authorship_version_22.pdf
Obviously the method can be done well or it can be done poorly. When done well, individuals move to greater levels of independence, in other words being able to type with little or no touch, being able in some cases to speak before and as they type or to read aloud what they have typed. You can see this in some of the documentaries we have made, including “Inside the Edge”
http://soe.syr.edu/centers_institutes/institute_communication_inclusion/About_the_ICI/Videos.aspx
and “Wretches and Jabberers”http://www.wretchesandjabberers.org/“

I don’t know that going to these various sites will completely sway those who are convinced FC is an invalid method of communicating, but it certainly is a start for anyone interested in FC for their child or who are curious about it.  For the sake of full disclosure I also found this article, Facilitated Communication – What Harm it Can do: Confessions of a former facilitator.  It is a very disturbing account of a facilitator who influenced the person they were meant to help and did tremendous harm and damage to that person and their entire family.  But the conclusion, to reject FC as a valid method, is not one I can support.  There are a great many people doing all kinds of things (not just working with Autistic people) who should be better trained, who should not be working in the field they’ve chosen because they are not suited for it, are not able to see how they are influencing their work or the “studies” they’ve conducted or have enough distance or perspective to see how their “interpretation” is not “scientific evidence”.  A few extremely well-known and influential psychiatrists who currently work in the field of autism leap to mind. These people have done tremendous damage to Autistic people because of their assumptions, inferences and the way they’ve interpreted data based on their neurotypical thinking about a group of people who are NOT neurotypical.

Two years ago we began to teach Emma how to form the letters of the alphabet.  Up until that point, no literacy method we tried worked.  But when we gave Emma physical support, by holding her forearm and even in some cases by using direct hand over hand support in helping her form the letters of the alphabet, she was able to progress.  From there we began to teach her, coupled with sequencing exercises, written and spoken demands, such as “give me the duck” from a field of five manipulatives, she was able to do so.  At the same time we taught her the letters on a typical keyboard and again used physical support, which slowly over many, many months we began to withdraw until after a year or so she no longer needed it and now two years later types and writes independently.  Had we not used this method Emma would not be typing and writing independently.

As Amy once said to me, “Being skeptical is okay.”  And as Doug wrote me, “regarding those who see the evidence in studies that validate facilitation or who see the documentaries where people type with little or no support, and yet still criticize or doubt the method, all we can say is that they need to be more open to the evidence.”

Emma’s unassisted handwriting and self portrait – 2012

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How My Fears Drove Me To Pursue a Cure

Posted on October 4, 2012 | 34 Comments

A year ago if you’d asked me what my single greatest fear was, I would have told you it was what would happen to my daughter when my husband and I both died.  This fear was so worrisome, so looming that I often stayed up at night worrying.  Well meaning people would reassure me that “things will work out, they always do” or “group homes aren’t so bad, many are run by loving, caring people”, but none of this gave me solace.  My fear was the driving force behind my desperate pursuit of various medical interventions and treatments for my daughter.  This fear, more than any other was what drove me to search for a “cure”.  When I thought of my daughter’s future I saw one of those dark, formidable, gothic institutions, now used as set locations for horror movies.  Once my mind had latched on to that visual image my fear became so overwhelming, my throat so constricted, my body so awash in terror I would literally shut down, like an overloaded circuit.  Fade to black.

So what changed?  I began to read things like this -

Amy Sequenzia, a non-speaking, writer, poet, Autistic self-advocate from her poem Feeling Good:

“Feel the warmth of another soul                                                                                                   Ban the thoughts that block the light                                                                                           Refuse to hear what hurts, listen to the                                                                                    cry for help behind it

Well-being, feelings of unity                                                                                                             We are all the same”

Julia Bascom from her blog Just Stimming, her post Quiet Hands:

“1. When I was a little girl, they held my hands down in tacky glue while I cried.

5. When I was a little girl, I was autistic.  And when you’re autistic, it’s not abuse.  It’s therapy.”

Again from Julia, her post, The Obsessive Joy of Autism:

“If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”

The Third Glance, Words and Growing up Autistic: On Nature, Nurture and Abuse where she ends with this:

“But I’m not invisible anymore. I’m here, and I’m me, quirks, obsessions, passions, stims and everything else that makes me unique. Look out world, here I come.”

There were so many others, so many voices out there, somehow reading these blogs calmed my fears enough that I was able to begin dissecting them.  I was able to pause, even for a moment, allowing me to ask, what is this?  What is this fear really?  And although my immediate answer was that these were fears based in very real, logical assumptions, I was able to see that they were just that – assumptions.  They were still not reality.  Not yet.  I was also able to realize those fears were causing me to act in irrational ways.  My thought that the fear was a healthy, natural response to what I believed to be the reality of the situation, prompting me to pursue all kinds of risky, unproven and untested “treatments” for my daughter’s autism was taking all of us down a dark, dark path.  That fear caused me to behave differently toward her, but I couldn’t see that until I’d stopped and saw how my behavior toward her changed.  When I was able to stop, just for a moment and examine the fear, the fear began to fall apart.

My fears were based in things I assumed were the inevitable consequence of what I believed my daughter was or wasn’t capable of.  But this was not based in fact, I don’t have the ability to see inside my child’s mind.  In addition my fears were clouding all the things she was doing that I ignored or couldn’t see or hear.  Every single day, my daughter displays her vast intelligence.  When I read the writings of Autistic people occupying every point on the so-called spectrum, I began to see that my assumptions, what I had assumed I knew and believed were not based in anything other than that.  It was at that point that I realized I had a choice.  I could choose to believe in her incompetence and the inevitable outcome this perceived incompetence would take us or I could choose to believe her competent, making that looming horror no longer a given.

As I wrote recently in a comment to someone,  I chose the latter because to do otherwise and be wrong would be far, far worse.  This is something I cannot risk or would be able to forgive myself for.  But there’s another piece to this that is also important, and that is when we assume great things are possible, great things tend to happen.  It’s human nature to strive for independence, to communicate, to connect, ALL humans want this. Given a little encouragement we can do things we never imagined possible, but given nothing or criticism we wilt, become sad and angry.  My belief in my daughter will not change the very real challenges she faces, but it does and will help her far more than if I do not.

I’m off to the AutCom conference!

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A Revised Interview With Amy Sequenzia!

Posted on September 12, 2012 | 8 Comments

After posting last week’s interview with Amy I asked her if she was comfortable with me asking some follow-up questions inspired by her answers to my original questions.  She, very generously, agreed.  This is the new extended interview! Amy talks about her poetry, (including a poem about having a seizure) writing, being in an institution and how it feels to be ignored and thought incompetent by so many.  This interview has also just been published on Huffington Post, click ‘here‘ to read it there and do “like” it, share it and tweet it.  We need Amy’s voice to be heard to counter the massive amounts of misinformation out there.  For all of you who wonder what you can do – share Amy’s voice.  Get people to read what she’s saying.  

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.

2012-09-10-mail.jpegAZ: 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: How old were you when you began writing poems?

“I wrote some things soon after I learned how to type that my family thought were poetic. When I was about 16 I had a good teacher, and I wrote poetry with her. But then she left and for a while I did not have good facilitators.”

AZ: Is poetry your preferred way of expressing yourself?

“Sometimes it is easier to write in verse. That happens when I want to write but the subject is upsetting or if I am hurting. Sometimes I just feel inspired.”

AZ: What were your dreams for the future as a child?

“I had many. I was surrounded by ableism, although I did not realize that back then. I remember two things: I wanted people to know I was smart, and I wanted the other kids to play with me.”

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: From the day when you were 8, how many months or years did it take before you were able to type your thoughts and feelings, your opinions and able to converse, or was that immediate?

“It was immediate. But soon I began having seizures and for many years I made almost no progress. After that, finding good facilitators became harder. I can type with some people now, still hoping to be able to type with more.”

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? If yes, how so?

“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: You mention that you have other disabilities. What are they and how do they impact your life?

“I have cerebral palsy and epilepsy. I also have dyspraxia. Movement is hard for me. I am unbalanced and I tend to bump on things; I have many bruises. I cannot go down stairs safely by myself. My body takes a long time to respond and I fall easily.

My fine motor skills are basically non-existent and get spastic sometimes. I don’t feel parts of my body as I think other people do.

I can deal with all that. But epilepsy is the worst. I have seizures almost every day, without warning, at any time. It is not nice.”

AZ: Can you talk about what it is like having a seizure? Do you have any warning?

“I wrote a poem…

“Seizures

Seizures are like falling into
a sad and dark hole.
Rest is necessary and no sense
is strong enough
Yet the senses are very awake.
Beside me is my soul
so tortured by synapsis
of unconsciousness.
Seizures are hopelessness
going deep into the zone
of nothing.
A giant man coming after me
vital, intense
like an entity of torture.”

Copyright 2005 by Amy Sequenzia

“It is scary, I feel like I am falling in a deep, dark hole. I only realize I had a seizure when I am back, after a while. I also have partial seizures that are like hallucinations. I don’t remember anything about those.”

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’s website (ICI Website click  here) and question them yourself. Being skeptical is okay. That’s why Dean Biklen and the others at the institute do such a good job documenting everything.”

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: When were you in a school/institution and for how long?

“I was 6 and I asked to leave after I learned how to type, when I was 8 years old.”

AZ: Can you describe that experience?

“Painful, isolating, lonely.”

AZ: What are the most common misperceptions people seem to believe when they first meet you?

“That I am ‘not there,’ that I am not smart or that I cannot think by myself, that I am a child and that I deserve pity. None of these are true.”

AZ: If you could write a script for a stranger meeting you for the first time, what do you wish they would say?

“Not what they would say, but how they would approach me. With respect and interest. Not ignoring my disabilities or how I look and act — I am not ashamed of that — but wanting to know what I think, how I feel.”

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.”

Amy’s voice needs to be heard.  Please help me inform the misinformed, educate those who are being given incorrect information by any number of well-meaning people not just in the field of Autism, but all fields of  ”Mental Health” as well as Education by sharing Amy’s words.  Email this, share it on Facebook, tweet it.  Amy has given interviews to others as well as written a great many pieces for other blogs.  I am listing but a few of them below.  

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An Interview With Amy Sequenzia

Posted on September 6, 2012 | 16 Comments

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.

Amy Sequenzia

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!

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