Tag Archives: Wretches and Jabberers

Dare to Hope

Posted on May 1, 2014 by | 35 comments

Trigger Warning:  Parental despair

Five years ago I was in a bad, bad place.  Life felt unbearable.  The future loomed ahead shrouded in fear.  I could not imagine a life that was not bleak and filled with pain.  There were times when I could not bear the thought of another day.  There were times when I felt it was all too much.  People would make kind suggestions, but none of their words made sense to me.  I was sinking and saw no light.  I thought it was because of my specific circumstances.  I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her.  I was told she couldn’t comprehend this world.  I was told concepts like less and more, time, currency were beyond her ability to grasp.  I was told she was in her own world.  Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children  had.

I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed…  There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry.  I cried for myself, but I also cried for my child.  I loved my child.  I ached for my child and what seemed to be her inevitable future.  Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being.  I had fantasies of “heading north”.  I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.”  Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing.  There was a part of me that meant it.  I wanted to leave all that pain behind me.

There are those reading this who will cringe at this description.  There are those who will judge me and what I once felt.  There are those who will point out how self involved all of this sounds.  They will say, but how could you not see that what you were feeling was affecting your child?  There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror.  I understand those responses too, because now, I catch myself feeling those feelings too.

My daughter has defied everyone’s expectations, including ours.  She is writing now.

She is writing such incredible words.  Sometimes a sentence may take her five minutes to construct.  I would cheerfully sit for thirty minutes or however long it takes for her to express herself.  Parents hear about my daughter and they say, “Ah, but my child isn’t like that.”  And so I ask, “How do you know?”  Parents say, “I know my kid.  He/she isn’t able to understand.”  I once believed that too.  And so again I ask, “How do you know?”  Parents say, “I know my child better than anyone.”  I once said this as well.  I thought I knew.  I believed what others told me.  She would laugh and then run full force into a cement wall, using her head as a batting ram.  We would get the dreaded phone calls from her school.  All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.”  “She does not know the value of a penny.”   “We will continue to work on sight words.”

Today my daughter is enlightening me.  If you want to know more, read “How We Got Here“.  Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.”  Her school is now trying to learn RPM so that she can write with them too.

I cried when she wrote that.  I cried because I didn’t know until recently.  I cried for all the years when she had no way of telling us.  I cried for all the times I didn’t believe.  I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams.  I cried for every single parent who has ever felt the way I once did.  I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them.  I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.”  I didn’t dare hope that one day my daughter might be writing the things she now writes.  I didn’t dare hope, it hurt too much.

To the parents who feel overwhelmed with fear and despair  – I was once just like you.  Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant.  I’m grateful now that I didn’t find such a group because there’s another way.  I found another way, but not before making many, many more mistakes.  This blog documents a number of the mistakes I’ve made over the years, but not all of them.

If there’s one thing I want to say, it’s please, dare to hope.  Without that we are all lost.

*As always, I asked Emma for her permission to publish this post.

Watch:
Wretches and Jabberers
Mark Utter’s I am in here

Read:
Ido Kedar’s book:  Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.

Emma getting ready to write

Emma getting ready to write

35 Comments

Posted in Autism, Parenting, presume competence

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A Conversation with Tracy Thresher

Posted on July 30, 2013 by | 23 comments

One of the things I love about having a blog are the conversations I get to have with people I would not feel courageous enough to approach and/or get to know.  Tracy Thresher is one of those people.  Tracy Thresher and Larry Bissonnette are the stars of Wretches and Jabberers, the documentary by Oscar Award winning and two-time Academy award-nominated filmmaker Gerardine Wurtzburg.  Wretches and Jabberers follows two non-speaking Autistic men, (Tracy and Larry) as they travel the world, reaching out to other non-speaking Autistic people in an attempt to change public perceptions surrounding intelligence and autism.

“Leading man, Tracy” as he often jokingly refers to himself, is a terrific public speaker.  I have seen him speak through typing many times now and each and every time I am riveted.  It isn’t just the poetic way Tracy puts words together, it is his humanity, his humor, generosity, and ultimately, his tremendous compassion for this world and the people who inhabit it, that makes people sit up and listen to every word he taps out one painstaking letter at a time.

The following is a dialogue Tracy and I have been having for about seven months now.  It has taken so long because of our schedules, but also because I could not stop asking more questions.  Every time Tracy answered one question, I would have about ten more.  Tracy was not only patient with me, but his kindness infiltrates his every response.  As this conversation could go on and on, as far as I’m concerned, I thought I better post what we’ve been discussing thus far.

AZ:  Tracy, how would you describe the documentary, Wretches and Jabberers that stars you and Larry Bissonnette?

TT:  Our film catapulted me to realize my dream of traveling the world to educate, learn and change old attitudes of discrimination toward people of varying abilities. The Larry and Tracy duo illustrates how intelligence is often worked out in a much different way. Our journey takes us to places of enlightenment and our humanity, humor and intelligence comes shining through our typing. Our mission to spread the reality of our amazing intelligence through our typing is our way of promoting the Presumption of Competence dispelling myths. Our story is one that is a road trip for two friends who are in Larry’s words “more like you than not”.

AZ:  “More like you than not” is such a wonderful description.  So much of the literature surrounding autism is about the “deficits” of Autistic neurology compared to non Autistic neurology. Can you talk about the assets and the similarities?

TT:  In my way of thinking, my experience initially was uncontrollable anger for the life I had trying to break through the misunderstanding in school. Kids can be brutally honest, reflecting the language that was the accepted norm in my childhood. Labeling kids is crippling. MR (mental retardation) on a diagnostic chart equates to NOT a candidate for the honor roll. Now I am able to communicate the reality of autism. I met Monk Hogen during the filming of “Wretches and Jabberers”, shining his wisdom on my autism. My true desire and purpose in life is breaking the walls of injustice down and my autism is the gift God gave me. I now focus on how I am connecting with all kinds of people through my work on the road. The high I feel in my own community is so wonderful, knowing that people want to know me. The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.

The anger on stage during my presentation in Japan was related to the lost opportunities in my education. I kept shouting out my automatics like “Look at me now! The kid you told one another to keep in isolation now is mentoring students which is healing salve to old wounds of injustice.” The other anger in Sri Lanka is more about the heat in the way it took my overly heated mix of perspiration soaking my clothing to extreme discomfort. Also, the popular foods in their culture are not in my comfort zone. Finland washed my anger, turning my heart to love of the climate. The cuisine helped too. Primarily, beautiful lands of countryside put my spirit at ease. Henna melted years of lost hope by crumbling away the feelings of isolating my heart to love.

People in the world often fear the paradox that autism usually presents. Larry and I mostly felt gracious vibes in our travels but the camera crew likely alters reality. To reflect on the cultural attitudes, the typing of my international friends is the true compass pointing to injustice.

AZ:  For children who may be trying to cope with similar frustrations and anger, what do you suggest to them and their parents, teachers and therapists?

TT:  This is my mission to show kids and their supports that putting communication to the top of their list of priorities is vitally cleansing to the mind. Releasing deep thoughts is the key to alleviating anxiety. Frustration leads the body to unproductive anger. Being able to show intelligent thought is the path to happier futures and true quality of life, leading to purpose. That is what I sought and found with typing.

AZ:  Was there anything others might have done to help when you were overwhelmed with anger?

TT:  Harvey and I have trust in our partnership. I need his firm yet kind support to stay on course with managing my autism. Harvey and I work well together. Typing is my outlet and open communication is the key.  Long term shared goals helps to keep me on track. Harvey’s commitment to my communication is the big time dosing of calm energy that I need. The commitment to presuming competence is the major breeze of refreshing air to cooling anger.

AZ:  You communicate by typing, but need someone to support your typing.  Why is it necessary to have someone physically supporting you? 

TT:  Impulse to type out my most irritating automatics like going to radio stations or wcax news gets looping in my mind. Having good facilitators is helping me to slow my typing to think and connect to my inner thoughts. I also need high goal of working on fading physical support to be more independent and type with lessening support. Building trust is critical to fading.

AZ: What issues and resources do you feel are most important for a parent to be aware of when encouraging their child to self-advocate?

TT:  I look up to pioneers in the FC world like Annie McDonald for her courage in the looking with the harshest disbelief on her typing. Rosie Crossley I also find gave me hope with her tell-it-like-she- sees-it firm approach. On a daily basis, the man of firm guidance is Harvey Lavoy. Harvey is my guru of staying focused. I would say he is my mentor of communication.

AZ:  When and how did you begin typing?

TT:  I was one lucky man to meet Alan Kurtz in 1990. Alan was motivated to unlock my wisdom. He treated me to intelligent conversation. Alan picked up on my eyes grazing on morsels of typing in magazines and the local paper.  I was one of the first people in my Green Mountains of Vermont to be treated to this life changing mode of communication. I was 23. Alan unlocked years of pent up chaotic thoughts. My intelligence was masked by autistic looping of hurtful labeling.

Early Supports:

I had my job coach Donna. Donna was kind and gentle. I liked her. Her support for typing limited me to Kinney’s work. It takes time to build foundations of trust and to build connections. Alan presumed my competence. The feeling of being spoken to in an intelligent manner was exhilarating. My inner thoughts hid in my mind looking for light like trees needing to flourish. My true communication jumping out on thin strips of paper was like first steps, shaky building of freeing my mind.

AZ:  Did you know you could write, but had nothing you could write on or with?

TT:  I could put letters together in my mind to make them join to form words. It was my life to play with vocabulary in lonely times. I did not think too much about how I could put my thoughts out on paper. The labeling I heard made for pesky lapping up of my hope for sharing my thoughts.

AZ:  How hard was it to start typing?

TT:  The torch of my fiery need to have a communication partner passed from Alan to Harvey Lavoy. Looking into my dark deep chaos was like unlocking madness. I held many hard grudges toward a label of retardation. The looping replay was non-stop with no way to talk or vent to Mom or a friend. Using miserable behavior is release of the locking in of intelligence. I had lots of my pre-scripted looping thoughts coming through my typing; things like radio and my local news station WCAX. My inner thoughts got masked in too much of holding on to my autism. I did not know the term proprioception then. Lack of knowledge of my own body ticked me off. My movement looked like no control in the beginning. Harvey had many arm wrestling contests with me. Ha-ha.

AZ:  Was it frustrating?

TT:  Oh big time ticked off was my typing in my starting out with Harvey. I had my liking of typing with my days with Alan. Mighty communication got put to the derailed track when Alan moved to Maine. Harvey took my brutal frustration in stride. I was brewing with lots of anger. I worried I would lose my life line of typing.

AZ:  Did you immediately feel motivated and liberated?

TT:  I did feel the tangled web of thoughts trying to be set free. My body was like a tight coil pulling so anxiously; did not easily break free to allow for liberation. Harvey motivated me by talking to me about self-advocacy. I began to hope life would be mine to choose. Emerging from despair is hard work. The power of typing took my mind to freeing the grip of autism but it took lots of grueling typing sessions.

AZ:  Were you resistant to typing at first?

TT:  My body took over my logical mind many times. I often ran from the typing space out to the parking space trying to regulate. It did not help to be gulping Mountain Dew. My impulsive habits with food led me to not think with clarity. I needed much support from Harvey to stay in my typing space.

AZ:  If yes, did anything help with the resistance?

TT:  Placing high expectations on me truly is my need. Harvey looked me in the eye to insist that I decide my purpose in life. To be in control I needed to make big changes in my life. I had terrible grating on Mom’s nerves yelling to be rid of. Holistic life of Buddhism is my goal but I easily revert to junk food at times. Harvey leads me to mindfulness by pointing out hard truths to help me make thoughtful choices.

AZ:  What did it feel like to be able to communicate in a way that people seemed to finally understand?  Was it at all scary?

TT:  Typing lifted my label of retard. Scary, it was not. More like “Take that!”  I had begun my journey to change perceptions. It was like the locking in of my voice was over. I was giddy with hope.

AZ:  Lots of people who watched Wretches and Jabberers have asked about your living situation.  Do you mind answering the question so many continue to ask – What is your living situation right now?

TT:  My Mom and Dad live near my week day home provider. I have my Wednesday family dinners. My mom is very involved in my life. I made the choice to leave my parents’ home to embark on my journey toward having a life of my own. It has been arduous at times but I have learned hard lessons toward life of my own making. Right now I live in one place Monday through Friday. I spend weekends with my family or with my weekend provider. I am working with my team on finding a place of my own.

In addition Tracy sent me a word document which he said I could share with all of you:

Many people have tried to help with my residential situation. I would like to clarify my search is plagued with difficulties of lack of knowledge in the way I would like to be supported. My family is my greatest place of stability but my idea of independence is having my own home to hang my hat, to set up in the way I choose. Mom has been there my entire life to help me on my path to being the independent thinker I want to be.

It is my time to search for the place I want to live that is both independent oriented but gives me the right thinking type of support I need. By that I mean it is necessary for me to have physical cues to get my body moving not bossy final answers made by others. My dream is to be in my own place where I make choices of the groceries I wish to buy; the decorative theme is of my choosing; the communication is open; the weekends’ activities fill my desire for exercise.

The most important thing is the commitment to learning how to support my typing. I have to let it be known that my family would never turn me from their home; this is my desire in my search for being in control of my life that I want to make for myself. I know my fans mean well to help in my residential search. For me it is more than a hook to hang my hat on; it is being in peace in my way of living where I make the house rules in cooperation with my like minded roommate.

For more on this blog about Tracy and Larry click ‘here‘, ‘here‘, ‘here‘ and ‘here‘.

Tracy – 1991
Early shot Tracy

Tracy at the ICI Conference – July 2013
Tracy @ICIConference

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Posted in Autism, supported typing, Wretches and Jabberers

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An Interview With Tracy Thresher of Wretches and Jabberers

Posted on June 20, 2013 by | 12 comments

Wretches and Jabberers, the not-to-be-missed documentary by Oscar Award winning and two-time Academy award-nominated filmmaker Gerardine Wurtzburg, follows two non-speaking Autistic men, Tracy Thresher and Larry Bissonnette as they travel the world, reaching out to other non-speaking Autistic people in an attempt to change public perceptions surrounding intelligence and autism.

I’ve written about the film ‘here‘, ‘here‘ and ‘here‘ and about meeting Tracy and Larry, ‘here‘, ‘here‘ and ‘here‘.  I cannot emphasize enough how mind altering this documentary is. It is imperative people begin to examine their own ideas about what intelligence is and what that means, particularly as parents of children who may be similar to Larry and Tracy, who appear profoundly disabled or have difficulties with verbal communication.  Tracy and Larry exemplify all that is thought to be “other” and yet, when they type, they are eloquent, often hilarious, articulate and philosophical, as well as insightful about society’s view of them.  After watching Wretches and Jabberers, one cannot help but conclude we are all more alike than not.  The divisions we perceive are shown as constructs of our own making.  The biases we have towards those with disabilities is something we all must actively change.

A few months ago Tracy Thresher generously agreed to answer a few of my questions.  What follows is our conversation, but as you read this, please think about questions you may have and leave them for me in the comments section or email me privately with them at:  emmashopeblog@gmail.com.  (Do tell me whether you prefer to remain anonymous as I will credit you with any questions I end up using, unless you prefer I do not.)  I intend to submit this interview, once it’s finished, to Huffington Post and hope it might inspire people to reconsider their assumptions.

AZ:  Tracy, how would you describe the documentary, Wretches and Jabberers?

TT:  Our film catapulted me to realize my dream of traveling the world to educate, learn and change old attitudes of discrimination toward people of varying abilities. The Larry and Tracy duo illustrates how intelligence is often worked out in a much different way. Our journey takes us to places of enlightenment and our humanity, humor and intelligence comes shining through our typing. Our mission to spread the reality of our amazing intelligence through our typing is our way of promoting the Presumption of Competence dispelling myths. Our story is one that is a road trip for two friends who are in Larry’s words “more like you than not”.

AZ:  “More like you than not” is such a wonderful description.  So much of the literature surrounding autism is about the “deficits” of Autistic neurology compared to non Autistic neurology. Can you talk about the assets and the similarities?

TT:  In my way of thinking, my experience initially was uncontrollable anger for the life I had trying to break through the misunderstanding in school. Kids can be brutally honest, reflecting the language that was the accepted norm in my childhood. Labeling kids is crippling. MR (mental retardation) on a diagnostic chart equates to NOT a candidate for the honor roll. Now I am able to communicate the reality of autism. I met Monk Hogen during the filming of “Wretches and Jabberers”, shining his wisdom on my autism. My true desire and purpose in life is breaking the walls of injustice down and my autism is the gift God gave me. I now focus on how I am connecting with all kinds of people through my work on the road. The high I feel in my own community is so wonderful, knowing that people want to know me. The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.

The anger on stage during my presentation in Japan was related to the lost opportunities in my education. I kept shouting out my automatics like “Look at me now! The kid you told one another to keep in isolation now is mentoring students which is healing salve to old wounds of injustice.” The other anger in Sri Lanka is more about the heat in the way it took my overly heated mix of perspiration soaking my clothing to extreme discomfort. Also, the popular foods in their culture are not in my comfort zone. Finland washed my anger, turning my heart to love of the climate. The cuisine helped too. Primarily, beautiful lands of countryside put my spirit at ease. Henna melted years of lost hope by crumbling away the feelings of isolating my heart to love.

People in the world often fear the paradox that autism usually presents. Larry and I mostly felt gracious vibes in our travels but the camera crew likely alters reality. To reflect on the cultural attitudes, the typing of my international friends is the true compass pointing to injustice.

AZ:  For children who may be trying to cope with similar frustrations and anger, what do you suggest to them and their parents, teachers and therapists?

TT:  This is my mission to show kids and their supports that putting communication to the top of their list of priorities is vitally cleansing to the mind. Releasing deep thoughts is the key to alleviating anxiety. Frustration leads the body to unproductive anger. Being able to show intelligent thought is the path to happier futures and true quality of life, leading to purpose. That is what I sought and found with typing.

AZ:  Was there anything others might have done to help you when you were overwhelmed with anger?

Harvey and I have trust in our partnership. I need his firm yet kind support to stay on course with managing my autism. Harvey and I work well together. Typing is my outlet and open communication is the key.  Long term shared goals helps to keep me on track. Harvey’s commitment to my communication is the big time dosing of calm energy that I need. The commitment to presuming competence is the major breeze of refreshing air to cooling anger.

AZ:  You communicate by typing, but need someone to support your typing.  Why is it necessary for you to have someone supporting you?

TT:  Impulse to type out my most irritating automatics like going to radio stations or wcax news gets looping in my mind. Having good facilitators is helping me to slow my typing to think and connect to my inner thoughts. I also need high goal of working on fading physical support to be more independent and type with lessening support. Building trust is critical to fading.

Tracy Thresher

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Posted in Autism, Autistic Role Models, Wretches and Jabberers

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Why Wretches And Jabberers Is Essential Viewing

Posted on May 23, 2013 by | 27 comments

Wretches and Jabberers.  I have written before about this documentary, but I’ve never fully explained why this movie had such a profound impact on me, on my thinking and subsequently on my family.  I will attempt to do that now.

I watched Wretches and Jabberers at the urging of my friend, Ibby last summer.  If a person’s life can be seen as a series of lights, indicating special influencers, Wretches and Jabberers was a beacon.   I knew nothing about supported typing, in fact, I’d never heard of it, so I watched in fascination as both Larry Bissonnette and Tracy Thresher (who are mostly non-speakers and Autistic) typed with their support persons, Pascal Cheng and Harvey Lavoy.  And I wondered whether my daughter might find communicating easier if she typed, instead of being expected to speak.

Larry is a painter, lives with his sister and was institutionalized as a teenager.  He shouts out things like “Bad boy!”  Tracy hits himself in the head when frustrated and has nowhere he can call “home”.  The documentary follows Larry and Tracy as they travel the world meeting other non speaking Autistics.  Again and again the viewer is shown a mostly non speaking Autistic person who has been deemed intellectually incapable by society, only to witness their intelligence and humor break through the silence by typing on a voice activated keyboard or iPad.  And again I thought about my daughter.

It is impossible to watch the film and believe these two men are isolated cases.  One cannot view this documentary and not question one’s preconceived beliefs about intelligence. The film defies the accepted and common non Autistic assumptions about Autism and what it means to be Autistic.  And for me, anyway, it made me question everything I thought I “knew” about my daughter.  All the things I had begun to question, whispering doubts about my thinking that I was no longer able to ignore because of the blogs I was reading written by Autistic people, were now amplified.

I have been interviewing Tracy Thresher for a piece I’m working on that I intend to submit to Huffingtion Post.  In answer to my question about what it meant to him making the film he wrote, “Our film catapulted me to realize my dream of traveling the world to educate, learn and change old attitudes of discrimination toward people of varying abilities. The Larry and Tracy duo illustrates how intelligence is often worked out in a much different way.”

Later in my interview he wrote, “…my mission to show kids and their supports that putting communication to the top of their list of priorities is vitally cleansing to the mind. Releasing deep thoughts is the key to alleviating anxiety. Frustration leads the body to unproductive anger. Being able to show intelligent thought is the path to happier futures and true quality of life, leading to purpose. That is what I sought and found with typing.”

Once again I thought about my daughter and her difficulty with oral language and the frustration that causes her.

Wretches and Jabberers was like an enormous, day glo green, neon sign saying “follow me” on it.  Powerful, funny, poignant, Wretches and Jabberers is essential viewing for all human beings, not just those interested in Autism and parents of Autistic children.  It rattles our unexamined biases, our beliefs, our perceptions and everything we are being “told” about autism, our children and what is and isn’t possible.  And if you are like me, you will think about your child and the world differently as a result of watching it.

One of my all time favorite photographs of Larry Bissonnette taking Emma’s photograph in Tampa, Florida ~ April 2013  (Amy Sequenzia is in the background)

Larry takes Em's photograph

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Posted in Autism, Parenting, supported typing, Wretches and Jabberers

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Parenting & Presuming Competence

Posted on May 14, 2013 by | 82 comments

I am reading Anne of Green Gables to Emma.  Three years ago it would not have occurred to me to read her a book that I might have enjoyed at her age.  Three years ago I was “reading” picture books to her before bed.  Three years ago I did not assume she understood the stories in those picture books.  Three years ago I not only did not assume my then eight year old child understood what I read, but I also did not assume she understood 90% of what was being said to her.   Because I did not assume she understood I treated her as though she couldn’t understand.  I treated her as though what I thought was a fact.  Then I learned I was wrong.   Not only did I learn my assumptions were incorrect, I began to see how those assumptions caused me to act and treat her as less capable than she actually was.  I treated her as though she couldn’t and I didn’t see how this attitude was hurting her.  Instead of teaching her to do things for herself, I did them for her.  It was quicker, easier…

I wrote a post not long ago ~ Presume Competence, What does that mean exactly?   People have a tough time with the idea of presuming competence,  let alone putting that idea into action.  I get that.  I did too.  Here was a child, my child, a child we had been told was capable of this, but not of that, a child who was treated by society as much younger than she actually was, a child who, because of her unreliable language did not have conversations with us, did not answer most of our questions, never asked us questions, and so we assumed had little if any interest in such things.  We made the mistake of assuming language retrieval issues were indicative of lack of intent and desire.  We made the mistake of limiting our thinking and therefore limited our child.  We thought we knew, until we didn’t.  We behaved as though what we thought was true and our behavior and actions or inactions fed into that erroneous thinking.

I’ve spoken a great deal about the brilliant documentary by Gerardine Wurzburg, Wretches and Jabberers.  I continue to urge everyone I know to watch it because it is the best illustration I know of, that explains the concept of presuming competence and what can happen as a direct result of doing so.  It is a highly entertaining, moving documentary following two (mostly) non-speaking Autistic men as they travel the world meeting other non-speaking Autistic people who are all far more capable than society believes.  Many are in “life skills” programs or work initiatives doing menial tasks like paper shredding and folding towels.  They type about their mind numbing boredom and brutal frustration they feel as a result of being treated as far less intelligent than they are.

Presuming competence is an act, it isn’t just an idea.  Presuming competence is the single most powerful action we have taken that has directly helped our daughter flourish and grow.  Nothing, absolutely nothing else we’ve done has helped Emma as much as presuming competence.  When we stopped limiting her with our limited beliefs of what she is or isn’t capable of and began giving her the information and materials she needed, she has taken off.  In school she is being taught grade level science, at home she is being taught grade level geography, I am reading age level fiction and nonfiction, she clears her own dishes, cleans them and puts them away.  She sorts her own laundry, helps fold it and knows how to make pancakes without assistance.  She takes a shower on her own, has learned to shampoo her hair and brush it afterwards.  She brushes and flosses her own teeth with minimal support, she dresses herself.  When it is clear she needs help learning to do something, we help her, without admonishment, without distress, but instead with the knowledge that she will eventually learn to do it on her own.

Presuming competence does not mean we expect her to know how to do something without support and instruction, it means we assume she can and will learn with appropriate accommodation.  This is is a very different way of thinking than either assuming she can’t do something and never teaching her, or teaching her, but requiring her to prove her knowledge over and over before moving on.  With reading comprehension we realized we were asking the wrong questions.  Often we were asking her to answer questions that were not obvious to the story.  When she couldn’t answer, we’d dumb down the reading material and then wonder why she wouldn’t pay attention.

In the beginning, presuming competence felt like a leap of faith.  It scared me.  I didn’t want to get my hopes up.  I didn’t want to feel the disappointment that I knew I’d feel if I was wrong.  It felt like a massive disconnect.  But presuming competence is not about my ego, my expectations or anything else involving me.  Presuming competence is about respecting my daughter and respecting her process.  It is about honoring her.  It is about giving her what she needs to flourish.  It is about dispensing with what I think, believe and have been told.  Presuming competence has nothing to do with my fears of success or failure.  Presuming competence is not about me at all.  It is all about my daughter.

Harvey, Tracy, Pascal & Em @ USFEmma takes the stages with Pascal, Tracy Thresher and Harvey

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Trashing Common Misperceptions About Autism

Posted on April 9, 2013 by | 54 comments

“Trashing Common Misperceptions About Autism and Autistic People and Creating a New World” – that’s what I first wrote as the title for this post, but it’s a mouthful and given the limit on characters on twitter, I revised it.

We just returned from Tampa where Richard, Em and I went to a screening of Wretches and Jabberers and to stay with my friend Lauri and her family, or as Em referred to it, “Have sleepover with Henry three.”  Which is an apt description because we spent three nights there.  Four days and three nights of paradise.  Four days and three nights of being with another family and a whole group of friends, new and old who didn’t judge, but rather embraced, a truly inclusive group, coming together, eating, laughing, connecting, talking and typing.  It reminded me a little of my experience at the Autcom Conference this past fall, except it was far more intimate and this time my husband and daughter shared the experience with me.  For four days we were given a glimpse of paradise.   A little peek into what our world could be like, but isn’t…  not yet.

Many people believe, erroneously, that Autistic people aren’t as interested in having friends, developing relationships or crave having mentors as we, non-Autistics.  Those people have never seen Henry’s smile when he is around his mentor and friend, Tracy.

Henry & Tracy@USF

Those people who doubt, didn’t witness Emma’s tears last night when we returned home and she made me promise we would see Henry again and have another “sleepover” with him and his family.  They did not witness Henry and Emma’s laughter and joy from being around each other.

Em and Henry hanging out together by the pool

E&H -Friends

Larry takes Emma’s photograph – perhaps the single greatest compliment a person could receive.  (Amy Sequenzia is in the background.)

Larry takes Em's photograph

They weren’t there to hear Emma tearfully say last night, “Please Mommy.  Go back to Florida tomorrow?  Play with Henry again soon?”

Just because someone cannot or does not express with words their love for another in the way we might expect, does not mean they do not feel it.

Many believe that if a person doesn’t speak, or speaks with a great deal of scripting and echolalia they are not interested in communicating or have little to say.  Those people have never witnessed a typed conversation between those so-called, “non-speaking” or atypical speakers.

Harvey, Tracy, Pascal and Larry, the stars of Gerardine Wurzburg’s documentary, Wretches and Jabberers

H,T, P & L.

Emma, being the consummate performer that she is, could not resist occupying the seat Larry vacated during a break at the University of Southern Florida, the day before the screening, where she wrote for all to read – “My mom and dad hope to meet more people like Larry and Tracy.  Wow(*!)  I am stirring up a crowd(*.)  time to work with people at home in new york to show them it is the intelligent emma there…”  *punctuation was added by me for the purpose of this post and indicates the smile Em gave and the pause she took between typing “crowd” and “time”.

Harvey, Tracy, Pascal & Em @ USF

Em Types@USF

Many people are surprised to learn that even those who do not speak can have wonderfully nuanced senses of humor, can enjoy deep, meaningful friendships, have a great deal to say and are often far more profound than most speaking people are in any given 24 hour period.

A conversation between Tracy, Henry and Emma about getting on board the “inclusion typing train” the night before the Wretches and Jabberers screening.  Tracy is to Henry’s right and out of the picture frame.

H &E type

Tracy, Henry and Emma make a “pitch” to Academy Award winning director, Gerardine Wurzburg who was standing nearby!

Em types

Em takes Gerry Wurzburg’s photo 

Gerry Wurtzburg

Many people assume Autistics have intellectual limitations commensurate with their “severe” and “moderate” labels, yet given appropriate accommodations this idea has been proven wrong again and again.  Yet another reason those labels are not only meaningless, but actually damaging.

Tracy types in answer to a question from the audience about the impact the documentary and meeting monk Hogan has had on his life.

Tracy @ W&J screeening

Many people believe inclusion of Autistics in schools will “bring the other children down” and that inclusion in society will be harmful, when the truth is the opposite with many studies proving this.   (Why this even needs to be proven, is something I am still trying to wrap my mind around!)

Mary Schuh (director of development and consumer affairs at the National Center of Inclusive Education Institute on Disability) and Henry at the Wretches and Jabberers screening at the Tampa Theatre, April 6th, 2013.  Henry is now attending the public school near his home.

Mary & Henry

These are only a few of the beliefs people have when it comes to autism and Autistic people.  Yet, if people were able to witness a weekend such as the one we just experienced, I guarantee their minds would be changed and we would be one step closer to creating a new world.

*Emma approved this post.

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“Presume Competence” – What Does That Mean Exactly?

Posted on March 7, 2013 by | 76 comments

When my daughter was first diagnosed at the age of two and a half, presuming competence was not a concept I was ever told about or had heard of.  And even if someone had suggested we do so, I’m not sure I would have fully understood what that meant exactly.  So what does “presume competence” really mean?  And how and why should we carry out a presumption of competence?

In an interview, Douglas Biklen explained:  “Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world.”

A key component to presuming competence is to become aware of the prejudice that currently exists regarding autism and how these ingrained beliefs harm not just our children, but ALL Autistic people.   Like any prejudice, based on layers and layers of misinformation, misperceptions, and misunderstandings, we must be willing to acknowledge our own “beliefs” before we can begin to deconstruct them.

When my daughter was little with almost no language I could not understand how it was possible for her to learn to read and write if she did not speak first.  I was surprised and confused when I learned how completely wrong I was.  When I read about all the non-speaking Autistic people who had learned to read and write despite being given no formal instruction, it seemed magical to me.  This mind that seemed, from my limited perspective, to not understand so much, actually was taking in far more than I could imagine, let alone believe.  It wasn’t until I was able to see my own limitations caused by the things I had been told about autism and hence, my daughter, that I was able to move beyond that thinking and embrace another way of thinking.  I had to acknowledge my misperceptions and the misinformation I was given, then I had to question everything I thought I knew and was being told.  I had to seek out Autistic people who were kind enough to share their own experiences before I was finally able to dispense with my erroneous ideas and move beyond them.  In case anyone’s missing it, there is a certain irony in my early assumptions regarding Autistic competence.

At the Institute on Communication and Inclusion conference, which we’ve just returned from, and I began writing about in yesterday’s post, Tracy Thresher typed, “… couldn’t let anyone know I could read and I understood what was said to me the training gave me the way to communicate with others.”  On the Wretches and Jabberers website, Tracy wrote, “My communication is paramount to my well-being and is key to my being an active citizen.”  He goes on to say, “I may appear to be a man shrouded by a cloak of incompetence but if you will take the time to listen to my typing you will understand I am intelligent.”

What I have come to understand, is that a presumption of competence is much more than a set of beliefs, it is a way of interacting with another human being who is seen as a true equal and as having the same basic human rights as I have.

A presumption of competence may seem like a leap for many non Autistic people,  it may even feel like a disconnect.  Some may argue that their non-speaking child cannot possibly understand, that they know this beyond any doubt and I must ask, but how can you know this for sure?  We may tell ourselves that our child is too “severe” and we are setting them up for certain failure by presuming competence.  To these people I would suggest the opposite is true.  The only true failure is when we walk away and assume incompetence.

Presume competence means – assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand.

To presume competence means to assume your child or the other person does and can understand when they are being spoken of and to.

Presume competence means talk to your child or the other person as you would a same age non-Autistic child or person.

Read and have available age appropriate stories and give access and instruction to age appropriate learning material.

Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization.

It does not mean that we will carry expectations that if not met will cause us to admonish, scold or assume the person is being manipulative or just needs to “try harder”.

To presume competence does not mean we assume there is a “neurotypical” person “trapped” or “imprisoned” under an Autistic “shell”.

Presuming competence is not an act of kindness.

Presuming competence is not something we do because we are a “good” person.

We do not get to pat ourselves on the back because we have presumed competence.  If we believe we deserve a pat on the back and/or acknowledgement, then we are not presuming competence, we are more likely being condescending.

One last thought regarding presuming competence…   to presume incompetence is to actively do damage.  Let’s all agree not to do harm to our fellow human beings.

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To the Person Who Googled “I don’t know if I can handle Autism”

Posted on December 4, 2012 by | 28 comments

I have three things I need to say to you.

First.  Come.  Talk.  Find a safe place where you can talk without being judged, somewhere private, somewhere and with someone(s) who will understand and listen.

Second.  Fear.  Feel the fear.  It’s impossible for me to talk about autism without talking about the abject fear I used to feel, every single day, every moment.  They say fear can be informative.  This was not my experience of it in the beginning, I was running too fast and doing so much to avoid it.  Fear drove me to do a great many things I regret.  I wish I could tell you I have no regrets, but I do.  So, so many regrets.  Avoiding the fear is just one of them.  I wish I’d sat with it.  Leaned into it and listened to it, without believing what it whispered to me as though it were fact.  Listen to it, but don’t believe it.  Who knows what I might have learned all those years ago.  Who knows had I done that, what mistakes I might have avoided.  Who knows?

You see, fear was the driving force behind my relentless search for a “cure”.  Fear is what made me think anything I did was better than doing nothing.  Fear drove me to rationalize some dangerous and very risky “interventions” because I thought to do otherwise was wrong.  It was my fear that kept me up at night, on the computer, typing one more search word into Google’s vast engine, hoping I would find the thing, the remedy, the treatment, the pill, the tincture, the doctor, the nutritionist, the biomed doctor, the QiGong Master, the homeopath, the naturopath, the GI specialist, the thyroid specialist, the speech therapist, the occupational therapist, the cranial sacral doctor, the shaman, the Zuni chieftain, the psychic, yeah you read that right, the psychic, each and every one of these people I put my faith in.  I convinced myself that this person, finally would be the ONE.  They would reach out their hand and show me the path I needed to take.

All those words used to describe autism and Autistic people, our children or parents or siblings, all those words like, “burden”, “epidemic”, “crisis”, the war terminology evoked telling us how we must “fight” and “combat”, all those words like crumbs left in a dark forest were words I believed and used and never, never once during those early years did it occur to me to question them.  For those who did, well, they obviously didn’t have a child like mine.  You had a child who was less profoundly affected by autism than mine.  This was my thinking, this is what I believed in my heart.  (This is my story, it may not be yours, but it is the only story I can tell.)

Third.  There is a documentary I love.  I have watched it many times now.  It’s called Wretches and Jabberers.  I’m not going to tell you more, you just have to see it for yourself.  It’s available on iTunes, Netflix and Hula.   You can purchase a copy from Amazon.  Even if you ignore every other thing I’ve written here, just watch it.  It is a documentary that every human being on this planet should see, because it is about more than just autism.  It is about our beliefs and how our beliefs make us behave in ways we might not otherwise condone.  It is about prejudice and fear and ingrained thinking and the inherent limitations all of that encourages for those who are different.

And finally remember this – just because someone does not speak, does not mean they have nothing to say.  Just because someone cannot make their needs known, does not mean they have none.  Just because someone does not tell us they love us does not mean they do not.  Just because someone does not look at us, does not mean they do not see us.  Just because they do not seem to understand in a way that we recognize, does not mean they do not and cannot.  Just because we think they are ignoring or cannot hear us, does not mean they are or do not.  Just because we think someone cannot write or read does not mean they can’t or never will.

Just because we feel, in this moment, we cannot handle something does not mean we can’t.  With support, we can and we will.  And so will our children.  They can, they do, and with help, they will.  Believe this and you will not only help your child and yourself, you will help the world and all human beings who inhabit it.

Choose to believe.

Emma on her 4th Birthday – 2006

Em - 2006

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AutCom 2012 Conference – The Best Kept Secret

Posted on October 8, 2012 by | 47 comments

The Autcom conference was a fleeting glimpse into paradise.  A tiny taste of how the world could be were we accepting of each other, treated all people as equals and with respect, without prejudice, without assumptions, without bias.  Autcom was a window into how the world could be, but isn’t.  Not yet.  Words do not do this conference justice.  How could they?  How do you describe a room full of people who are connected not through race, nationality, religion, political views or neurology, but instead are connected by an idea.  A vision.  How do you describe that?

Accommodation – it’s a word we hear, but what does it really mean?  At the Autcom conference it meant waving hands at the end of a presentation instead of clapping, lowered lights, snacks that included gluten-free and casein free items and non dairy alternatives.  Accommodation meant no one stared disapprovingly at anyone who stimmed or made noise or got up to leave in the middle of a talk.  Accommodation meant people were polite and moved chairs that might be blocking someone’s ability to come or go.  It meant using a microphone or repeating a question for those who weren’t able to hear the first time.  It meant being respectful and considerate when someone came up to peer at your name tag and it meant understanding that when that person gently touched your hand after a presentation it was their way of thanking you and I defy anyone to not see the beauty and love in that.  Accommodation meant slowing down while someone typed their answer or question or thought.  It turns out accommodation means being a thoughtful, considerate human being who is respectful of others.  How is it this isn’t done automatically, as a matter of course.  How is it that we as a society have drifted so far from this very basic and easy way of being in the world?

The single biggest issue I had with this wonderful conference was that there were too many terrific things going on at once and it was impossible to see and hear everyone and everything.  To give you an example of this – on the first day of the conference after Ari Ne’eman’s welcome and an opening keynote address by Jennifer Paige Seybert, was Savannah Nicole Logsdon-Breakstone’s presentation – Loud Hands Project’s Neurodiversity 101.  At the same time, Larry Bissonnette, Pascal Cheng, Harvey Lavoy and Tracy Thresher were doing a presentation on Supported Typing, which I really needed to go to in order to assess whether this might be something we could use to help Em communicate more effectively, but next door to them was Nick Pentzell, Hope Block, Jacob Pratt and Autumn Dae Miller presenting “Rated “R”: That Oh-So-Difficult Topic”.  I cannot tell you how much I wanted to hear them too and later heard from others that it was a not to be missed presentation, sadly though, I missed it.  Human Development Journey was presented by Cecilia Breinbauer about using DIR, which was the method Richard and I were trained in by the late Stanley Greenspan, after abandoning ABA.

Ari Ne’eman

Jennifer Paige Seybert

That evening after dinner and a wonderful performance by Jordon Ackerson who reminded me of Emma because of his beautiful voice, we watched Wretches and Jabberers, with a Q&A with Larry and Tracy.  This was my third time watching this documentary, which I posted about last month ‘here‘.   I asked them about self-injurious behaviors, something both engage in during the film.  I asked for  their opinion about the commonly held belief by many that SIBs should be thwarted and how parents and caregivers are often unsure how to deal with this.  Tracy typed, “That was years of frustration with no way to reliably express myself working its way out through my behavior the problem was lack of communication which pissed me off.”  Larry typed, “I lived in an institution so I was locked in arms of restraint its legal but immoral and only represses anger nothing looks more kind than softly spoken words and lit up smiles.”

Jordan Ackerson

Tracy Thresher

Larry Bissonnette

Read that again.  “… nothing looks more kind than softly spoken words and lit up smiles.”  The presentations were terrific, but it was what is possible that this conference represented, which affected me most profoundly. The AutCom conference was an example all organizations, who say they are interested in Autism and helping those who are Autistic, should follow.  Autistic people make up a large portion of their board, Autistic people led more than 50% of the presentations, the audience was at least half Autistic, if not more.  At my presentation there were more Autistic people than not, for which I was truly honored by.  The conference showed what the world could be like if we work together, reach out to each other, include everyone despite our perceived differences with love, compassion and kindness.  Accommodation is less about accommodating and more about getting in touch with our humanity and what it means to be alive and sharing this planet together.  Accommodation and inclusion means we ALL benefit.

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Autistic Role Models and Mentoring

Posted on August 30, 2012 by | 18 comments

In addiction recovery, specifically in 12-step programs, mentoring (they use the word sponsorship, but it’s the same thing) is a key component to staying clean.  Within the “civilian” population, as addicts refer to those who are not addicts, most people who have achieved any degree of financial success, climbed the corporate ladder and found even a modicum of happiness in their chosen careers will cite at least one person in their life who served in the role of mentor.  Mentors (a good one) can open doors, provide insights, gently propel you down the right path when you’ve gone astray.   Good mentors mentor because they understand the joy of giving, of being generous to those just starting out, of helping another who may be struggling, of reaching out a hand in support to someone less fortunate and expect nothing in return.  They understand the joy of giving is how they also receive.  The founders of AA understood that no one understands another alcoholic as well as an alcoholic and to stay sober, one must “be of service.”

On a personal note (and this blog seems to have fallen off the precipice of vague, broad sweeping generalities and is now firmly rooted in personal, blatant, unabashed honesty) I became intimately familiar with mentoring when I most needed one.  I was in my thirties, I was searching for a way out of the hole I’d dug myself (click ‘here‘ and ‘here‘ for more on that) and I was told, “find someone who has what you want and ask them to sponsor you.”   It was also advised that I find a female to avoid any “conflict.”  So I promptly approached a man in his 60’s, who worked a blue collar job.  A big, craggy guy with more than two decades of sobriety under his belt and almost as many from an eating disorder.  He had “lost the desire to eat compulsively” and since that was akin to finding the holy grail, as far as I was concerned, he fit the criteria for “having what I wanted.”  When I asked him, he looked a bit taken aback, but graciously accepted and so began one of the most important relationships I had in those early years as I struggled to emerge from my various addictions and find my way in the world.  That man helped me.  He had no degree or training, by the world’s standards of “success” he certainly fell short, but he had a lifetime of personal experience to impart.  He was as unlike me as one human being could be from another, except for one – he knew what it was to struggle with an addiction and come out the other side.  He was kind, compassionate, patient and generous, and with his guidance I felt the joy of connecting with another human being who knew intimately what I was going through, while trusting that if I followed his lead, I had a chance of coming out the other side.  I have since had the privilege of mentoring a great many others over the years.

We all need mentors.  (It is equally crucial we also become mentors.)  People we can turn to who have been where we currently find ourselves.  People who can guide us, whether it’s in our relationships, our careers or just in living life more fully.  Mentorship can mean a great many things to different people, but finding someone who “has what you want” is a pretty good starting point.  Which brings me to autism and my dream for my daughter, Emma.  I would love to think she might find a few Autistic adults to mentor her.  Autistic adults who might help her as she grows older, who want to take her under their wing and be a presence in her life.  An adult who is not her parent.  Come to think of it, I want this for both my children.  I don’t know how to orchestrate that.  But it’s something I think about a great deal.

Yesterday’s post, Wretches and Jabberers – Defying Labels was inspired by some wonderful comments from the day before.  One commenter, (Lauri who very generously agreed to let me share one of the video clips she sent me, you can see the others ‘here‘ ) told me about her son, H. whose life was transformed when he met his idols, Larry Bissonnette and Tracy Thresher (the stars of Wretches and Jabberers.)  She described how they spent a long evening communicating with one another.  She wrote how Larry and Tracy “have continued to nurture, support and mentor H in ways that are really magical.” Lauri wrote – “Here is a video Henry and I made last summer, it shows the magical ( I know that may sound trite, but it really was/is magical) connection he has with his mentors and friends Tracy and Larry.”

For my daughter I want an Autistic Adult with whom she might form a meaningful relationship with.  Ultimately Emma must choose such people for herself, I can only offer situations that might encourage this.  What they do or don’t do for a living is not something I care about.  I am much more interested in who they are as human beings.  The people I am drawn to have a couple of things in common.  Each of them has struggled, experienced hardship, worked through fear, taken risks, and maintained a sense of humor.  That’s the criteria for any mentor I am interested in, however Emma’s criteria may be different.  To all who have served as mentors and role models in my life and there are many, I am deeply grateful to each and every one of you.

One such role model, Amy Sequenzia, (I have written about Amy before, a non-speaking Autistic adult, self advocate, poet and writes often at Ollibean) has agreed to an interview with me.  I know many of you may have questions for her and she has agreed to answer as many as she can.  So if you want to ask Amy something, please list your questions in the comments section of this post and I’ll make sure she receives them.  Thank you Amy for agreeing to do this!

Emma – 2008

 

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Wretches and Jabberers – Defying Labels

Posted on August 29, 2012 by | 43 comments

A few months ago, my friend Ib, gently encouraged me to watch the documentary Wretches and Jabberers.  It’s available on Netflix and iTunes.  I was traveling at the time, Richard was in Colorado, I was in NYC.  In addition I can’t be bothered with the four different remote controls required to watch anything on our TV, let alone find a specific movie, put it in the queue, figure out which remote(s) to use, download the movie and watch it.  Yeah.  I know.  When I see a TV, anywhere (unless it’s already turned on) I automatically walk away.  It’s like a Pavlovian response at this point.  If I’m home alone or just with Em, the TV screen stays dark.  And I’m totally f*cked if Em wants to watch something and presses the wrong button by mistake.  My 12-year-old son, Nic, has been known to pat me on the head and say in condescending tones, “Aw… Mommy.  It’s okay.  Let me help you with that.”  Really.  This has actually happened.  Several times.   So, yes, it took me awhile before I finally was able to watch Wretches and Jabberers with Richard on Netflix.  I cried.  I laughed.  Wow, what a documentary!  I’ll wait here while you go to the above link and put it in your queue.

Larry Bissonnette and Tracy Thresher are predominantly nonverbal Autistics.  Larry is a painter, lives with his sister and was institutionalized as a child.  He hits himself in the head when frustrated.  He is echolaic.  Tracy is homeless. *Please read Tracy’s mom’s comment on this comment thread as my statement is incorrect.*   In the documentary he has places he is able to go for a few nights here and there, but nowhere he calls “home”.  Both Larry and Tracy communicate through facilitators by typing.  The documentary follows them as they travel all over the world meeting other nonverbal Autistics.  The film defies the accepted and common neurotypical views and assumptions about Autism and what it means to be Autistic.  Powerful, funny, poignant, it is essential viewing for all human beings, not just those interested in Autism, because it rattles our unexamined biases, our beliefs, our perceptions and everything we are being “told” about autism.

A terrific discussion took place in the comments on yesterday’s post.  The whole issue of mentorship and hf/lf (high functioning / low functioning) was brought up.  One person mentioned how “our functioning level should be based on how we treat our fellow humans not whether someone judges another’s way of communicating or perceiving the world as correct, or less or greater than another’s.”  Her remarks made me think about the neurotypical world.  What if each of us were given a functioning label?  What if our lives, our abilities were reduced to a set list of priorities.  Let’s say each of us was given a “critique” of our ability to meet that criteria?

If I was put under a similar magnifying glass as Autistics, it could be argued (of course all of this is subjective and that’s the point) I would fall into the moderately functioning category for neurotypicals depending on the set of agreed upon priorities.  I do not hold any position of power.  I write a blog for which I earn not a single cent.  I publish occasionally on the Huffington Post, again, I am not “employed” by them, I submit pieces, they publish them, no money is paid for those pieces.  I am mother to my two children, I do my best to care for them, but I do not “make money” for the privilege of having two children.  I have my own business, I make a decent living (for a great many years I did not and barely was able to pay my rent.)

I flounder in the face of tests.  I score poorly on most of them unless I have taken the time to study the material to ensure I am able to breeze through and even then I tend to make mistakes.  I freeze up when I feel nervous or stressed.  My vocabulary can be spotty, particularly when in stressful situations, I go off on tangents, I have difficulty writing a standard 5 paragraph essay.  I shut down completely in the face of mathematical word problems.  I use lots of adverbs, sometimes I change tenses in the middle of a sentence.  Sometimes it’s hard for me to stay on track.  I’m terrible at most cocktail parties.  My interest in cocktail conversation wanes after the first 5 minutes.  I have a passing interest in the weather, a favorite topic at such events.  I have special interests that I can go on and on and on about.  I cannot remember people’s names.  I’m marginally versed in social networking.  I dislike most TV.  I cannot stand any show with the word “housewives” in it.  I am extremely sensitive.  I make social faux pas (what is the plural of faux pas?) often.  I am not patient.  I am a terrible liar.  The list goes on and on.

We neurotypicals are not held to the same scrutiny our Autistic brothers and sisters are held to though.  We don’t have to worry that we will be slapped with a functioning label, which will be prominently placed on our resumes.  But what if we were?  I doubt we’d sit passively, without resistance and “accept” this kind of limited categorization.  I think many of us would protest vehemently.  I think many of us would rise up, organize protests, argue for our rights as human beings, we would advocate for ourselves, we would fight,  just as gays, African-Americans, Women and now…  Autistics are.

Emma – 2008

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