For those of you who do not have the time or inclination to watch the film, here are a few quotes from it, which I hope will serve to pique your interest enough to watch the film in its entirety. Because this is happening all around us, because this could be one of our children, because we, as a society, must become aware of what is going on, because without awareness and protest this will continue, because prejudice and brutality are not the answer, because as Barb Rentenbach continues to remind us, I might be you, because as my daughter, Emma has said on numerous occasions, “People have to listen. Mommy, people do not listen to Emma.”
“The National Disability Rights Network reported that in recent years, the misuse of restraint and seclusion has resulted in hundreds of deaths and thousands of injuries.”
Peyton Goddard – “It was bruted power jired by purses wrongfully called teachers trying to beat I. This war wasted my rest. The sweet in I evaporated out.”
Helena – “He slammed me up against the wall, arm barred me across the throat and lifted up so I couldn’t breathe. And then whispered, “How am I supposed to talk to you nice and slow so you can understand?”
Wil Beaudoin - “One particular day we went to see my son and we were going to give him a haircut. So, we took off his shirt and he was covered with bruises and abrasions, fifteen to twenty on his body…everywhere.”
Peyton Goddard - “Fright opted I timid, silent and unable to fight back. Telling myself sweet lies that the tortures did not matter.”
Brianna – “I did not have a speech-generating device. Good evaluation would have made that happen. I tried to tell my mother. She did not understand me or she thought the teachers knew everything.”
Peyton Goddard – “Try to see potent powerful potentials in each pierced person. There you will free their gifts. There I can feel I’m treasured. There nary I’m fret. I’m ready. Are you? Try please.”
Larry Bissonnette, Peyton Goddard and Tracy Thresher at TASH
When I asked Emma if I could post this video of her doing her latest “catch”, she said, “Yes! Post on blog!”
I’ve written about Emma perfecting her “catch” ‘here‘ and ‘here‘ and I’ve mentioned too, the hours of practice it took, for her to get to this point. It’s important you understand how hard she’s worked. She didn’t suddenly climb up a ladder, grab onto the trapeze, swing a few times and then catch someone else’s arms one day. She has been practicing this for years. Just as she didn’t suddenly begin typing sentences or one day open up a book and start reading it, Emma has worked hard, incredibly hard and for anyone to suggest otherwise is doing her and others who are accomplishing wonderful things a tremendous disservice.
Far too often we hear stories of children and people who, seemingly miraculously, began reading grade level material or began typing their thoughts or began playing an instrument and to us, the reader, the person who has just now discovered this story, this video, this whatever it is, it seems it all happened “suddenly”, “miraculously”, ”overnight”, yet this is rarely the case. Years and years of practice, of hard, hard work have taken place before that moment when we become aware of the person. How many times have we heard about someone being an “overnight sensation” with lots of exclamation marks following those two words. How often do we hear of someone who has accomplished incredible things, we marvel at them, but we also dismiss their tremendous accomplishments with our belief that it all happened “miraculously”.
The years leading up to those success stories are not so interesting to most of us. We don’t really want to know about the daily grind, day after day of showing up to perfect or master a skill. When we apply these same beliefs to people with disabilities we are doing them a tremendous disservice. Not only are we ignoring the difficult work, the hours and hours they put, in practicing and honing their skills, we are dismissing all that hard work with words like “magical” and “miraculous” and we are ignoring just how hard that work is. There is nothing miraculous about someone accomplishing something after putting in hundreds and thousands of hours of practice and hard work for years. Their accomplishment is not an indication of our failure. We do not need to dismiss someone else’s achievements to make ourselves feel better.
All those people who have gone on to prove themselves as more capable than most people gave them credit for are NOT examples of miracles. They got to where they are through HARD WORK. To all of you, Emma Z-L, Carly Fleischmann, Tito Mukhopadhyay, Jennifer Seybert, Jamie Burke, DJ Savarese, Barb Rentenbach, Amy Sequenzia, Emma Studer, Paige Goddard, Amanda Baggs, Henry Frost, Larry Bissonnette, Tracy Thresher, Sue Rubin, Alberto Frugone, Richard Attfield, Nick Pentzell, Rob Cutler (there are too many people to list) to all of you who have worked so hard, who continue to work every single day to communicate and do all that you do, your hard work is acknowledged and appreciated. I need you to know how much I appreciate the days, months, years, and for some of you, decades that each of you has spent showing up, day after day to do what does not come easily.
You are leading the way for my daughter. You are showing me how it’s done; I cannot thank you enough.
Today is 1,000 Ausome Things ~ The Autism Positivity 2013 Flashblog Event!!
For those of you who want the history of the Autism Positivity Flash blog in all it’s glory, this post from Outrunning the Storm is essential reading.
This flash blog event asks that we focus on “ausomeness” to counter all the negativity, fear, and very often, misinformation that surrounds autism, our Autistic children and Autistic people. There is no way I can detail all the Ausome things about autism I’ve learned in the last year, let alone last nine years, since my daughter was first diagnosed. So instead of using words, I am using images. Please enjoy this scrapbook, all taken in the last two months.
Larry Bissonnette (star of Documentary film – Wretches & Jabberers) taking Emma’s photograph
Emma types with support from Pascal Cheng. Tracy Thresher (star of Wretches & Jabberers) and Harvey Lavoy sit to the left.
Emma with her friend Henry
Barb Rentenbach (author of the book, I might be you) – cheering Em on
And this… just this… which if I could only send in one image, one snippet, it would be this – Emma soars and yes she and everyone else pictured above are the very definition of the word – AUSOME!
On March 1st, 2012 my life changed. I had no idea it was about to change. I had no idea a single blog post would impact my life the way it did. I didn’t know when I clicked on the link a commenter sent me on this blog, taking me to someone else’s blog, that I was in for the ride of a lifetime.
I had no idea.
On March 1st, 2012 I read Julia Bascom‘s post ~ The Obsessive Joy of Autism. A post she’d written almost a year before, but I was only now reading. Her post begins with this, “I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully.”
I had no idea.
I have read that post half a dozen times since I discovered it. And then I read her post just preceding entitled Grabbers. ”The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”
Read that again – “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”
As a parent I want nothing more than for both my children to find their way toward meaningful lives, lived with purpose. That they will then also find happiness I thought was a given. Or so I always believed. Does that mean they must be like me? Do I believe that their ability to feel happiness is reduced, lessened, not relevant, inadequate, inferior, if it looks different from my idea of what constitutes meaning and happiness? Can I let go of my preconceived ideas pertaining to happiness and what that means for anyone but myself? Do I even know what happiness is for me, let alone another?
I had no idea.
These were the questions that began to gnaw at me as I read Julia’s blog, Just Stimming. I urge anyone who is not familiar with her blog to read it. Just Stimming is beautifully written as well as powerful, poignant, evocative and for me anyway, gut wrenching.
Again, from her post Grabbers – (**Words highlighted in bold are mine, as in Julia’s post those words are italicized.)
“The hands are everywhere.
They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet.“
“…protesting just means you need to be grabbed more often, with harder and more insistent hands, until you realize that the way you move is fundamentally wrong, as wrong and deficient and disturbing and dangerous as you are, and if you want to be counted as a “you” at all you must let them grab you until you can stop your self.”
I had no idea and now I realize that claim begins to ring false, even to my ears. How was it possible to not have considered this? But no.
I had no idea.
“…Until you realize that the way you move is fundamentally wrong…”
The post ends with, “In the end it just comes down to you are wrong, and for that you must be punished. It simplifies to your body is not your own, but it is mine.“
I am about four years old, we are living in the first house I ever lived in. Our baby sitter, Mrs. Williams stands guard outside the bathroom where I have been told I will stay until I have had a “bowel movement.” I am sure she will not let me leave, but I cannot go to the bathroom on command. I feel anxiety course through my body, it is as though my entire being is encased in a net, I can breathe, but I am trapped. I sit staring straight ahead, wondering how long before she begins to yell at me. I am terrified of Mrs. Williams. She smells of antiseptic soap and wears a nurses uniform that crackles when she moves and those awful white shoes you see in hospitals that sound like she’s stepped in chewing gum when she walks. Her skin is pasty white and hangs from her body as though it were half a size too big. But mostly it is her eyes, partially hidden by glasses lens that do not conceal her anger and resentment. Those eyes hurt to look at because I see so much that isn’t said.
Finally I stand, tip toe to the sink, grab my drinking cup and fill it with toilet water then pour the water back into the toilet and flush. I place the cup carefully back on the edge of the sink and wait for Mrs. Williams to open the door, allowing me to escape.
“Your body is not your own, but it is mine...”
Julia’s blog was the beginning. It showed me a different path and urged me to follow it. I did. Along the way I have found countless other blogs and have even been fortunate enough to meet many of the authors of those blogs. Because of Julia’s blog I met my mentor and friend Ibby. Because of Julia’s blog I read E.’s blog The Third Glance, which I intend to write about in the near future. Because of Julia I have become a (I hope) better parent. Because of Julia I see the world differently. Julia’s writing opened my eyes. I wonder if any of us can ever really know how deeply our words can impact another. I don’t know that anything I write here can convey what this woman has done for me or how enormously she has influenced me and because of her influence the difference she has made to my thinking and life and by extension, my daughter’s life.
Julia’s writing gave me insight. She confronted me with her truth. She makes me think and rethink what I believe, what I think I know and she has made me question everything. This post doesn’t do her justice. How could it?
“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.
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
Larry takes Emma’s photograph – perhaps the single greatest compliment a person could receive. (Amy Sequenzia is in the background.)
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
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”.
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.
Tracy, Henry and Emma make a “pitch” to Academy Award winning director, Gerardine Wurzburg who was standing nearby!
Em takes Gerry Wurzburg’s photo
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.
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.
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.
Most of you have probably read Jim Sinclair’s famous essay Don’t Mourn For Us. If you haven’t, do. In the Loud Hands: Autistic People, Speaking Anthology a version of that essay comes after Julia Bascom’s wonderful Foreword. By the way, if you didn’t see the Huffington Post interview I did with Julia regarding the anthology and future projects, you can read that by clicking ‘here‘ and I’ve also embedded a link so those of you who haven’t read the Anthology can buy it and read, because.. well this book needs to be read by every person on this earth AND it’s now available in paperback as well as on Kindle, so who can resist? Here’s the “link” (again) to buy it. Full disclosure – I bought this book for a number of my family members and gave it as a Christmas gift!
I read the anthology as a PDF file first, then I read it again in paperback and now I’m rereading it with my highlighter in hand. There is not a single essay that has not been streaked with neon green highlighter. The anthology has contributions from a wide range of people (a few of my favorite writers are missing, but I am hoping this anthology will be followed with a second that will include writing from E. of The Third Glance (not to be confused with “E.” who is in the current anthology), Aspie Kid, Michael Scott Monje Jr and Sparrow Rose Jones to name just a few.) It’s not the type of book you can really quote from as each piece needs to be read in its entirety to get the full weight and power of it.
Having said that, I have to quote Jim Sinclair and hope that all of you will get the book and read it from cover to cover. Jim wrote, “The ways we relate are different. Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.” ”… you’ll find a world you could never have imagined.” This has been my experience, exactly. I think I’ve even said something close to this before. I believe I’ve said finding Autistic voices and reading their words was like being presented with proof that another universe exists, but that I never knew about. So for all of you who need or want proof that another universe, a more wondrous and fantastic universe than is imaginable, read the Anthology and be prepared to have your world changed in the best possible way!
One of Emma’s favorite Imax movies is about the Hubble Space Craft found to have a faulty lens and requires repair. Once fixed, it produces absolutely hallucinogenic images of the universe that are so beautiful it is hard to believe they are real. To me, autism is like those images, beyond anything I could have imagined.
What follows is a guest post by Kis Brink (for those who follow this blog you will know her as Gareeth). When she sent it to me, I was so taken with its insights, the power of her writing that I asked her if I could post it here. Kis gave me her permission for which I am honored. It was this piece by Kis that inspired yesterday’s post: Yes, These Are Things I Think About, What About You?
“Love is a very controversial word in the history of autism. Hurtful ideas that autism was caused by the failure of parents to love their children and equally as hurtful ideas that autistic people were incapable of loving were put forward. Many still believe them. For me love was something I learned over time and it is still a word I use cautiously and sparingly. I do not say, “I love you” unless I am sure. The word is never used to express a strong preference for something. I think love is like many other aspects of Asperger’s and autism where our take on it may be slightly different but this in no way renders our love less real. It took time for me to learn this though.
Society has rules about love. Who you should and shouldn’t love. Who you should love the most and so on. I like rules. I wrote about my adherence to them and creation about them in a previous article. As a child when the word love was mainly a word devoid of emotional content I had no problem meeting the norms for when to use it. It was only as my range of emotion increased that this became a problem.
Anyone who knows me well knows that unless you are prepared for honest answers don’t ask me a question. I know some people with Autistic Spectrum Disorders who have learned to use socially useful lies of the kind society expects. While seeing how they may be handy in many situations not only is this against my rules, I even have theory about why this is wrong. I tell those unfortunate people trying to help me by explaining that sometimes you need to tell small harmless lies that I do not believe there are degrees of truth. I expect that some autism experts would be quick to label my thinking on this topic black and white thinking, but it is the way I think. I tell people trying to convince me it is useful to lie that I don’t believe in white lies. To me there is truth and non-truth. This is the reason why I must think very clearly and sometimes long on what may seem like a “no-brainer” to most people.
“An everyday example of something I give more thought than others is the simple, “How are you?” that comes up everyday. I have even concluded from experience that most people’s automatic answer of fine is seldom the truth. This whole ritual seems illogical to me. If you care about the person you then have to ask more questions to determine what the truth is and if you don’t, well to put it bluntly, why ask in the first place? I know it is a normative behavior in our society. How this applies to love is it is also taken for granted that you will love your family and any offspring they produce. This, I think for most members of my family, would be reasonable. The part that gets me is, it is assumed that the onset of this love will be immediate. I don’t do immediate love. It seems illogical to me and perhaps even untruthful although it may be the truth for those who say they do. I have questioned some people on the subject but have yet to get a clear enough sample for a definitive conclusion.
“This brings me to the subtitle of this piece: Things Not To Say to Your Sister-ln-Law. I’ll say right off the bat that I am lucky to have an extremely understanding and kind one or looking back I suspect I provided ample opportunities for our relationship to grind to a complete and permanent halt. Almost ten years ago now my first nephew was born. He was in fact the first member of the next generation for our branch of the family tree. I was happy for my brother and sister-in-law and glad to be a Fasta (Danish for father’s sister). Society however expects more immediately. It seemed no one else had any reluctance to express love for this new scrap of humanity. I live some distance from my brother but planned a trip to see this child for the summer.
“When my nephew was four months old I made the trip to see him. On the coast I had been spared much questioning beyond his height and the usual things like that. I had none of his other kin to compare myself to. I had a new role as a human and I was going to figure out what it entailed. The first night of my visit after my brother went to bed, my sister-in-law and I were in the kitchen together. She asked what I thought of my nephew. It was a question I was still working on internally. I had these vague feelings that I could not quite name. I didn’t feel it would be correct to call these new feelings love at that point so I commented that I felt a sense of responsibility and commitment to the first member of the descending generation. This was a concept I had learned in anthropology that, to me, seemed to best sum up what was happening inside of me.
“Well it was quickly apparent that this was not quite the answer she had been expecting. I don’t remember if she was near tears or merely frustrated or both when she told me, “You know it’s okay just to love him.” This didn’t really make sense to me. I suspected I would grow to love him. I had hopes about what our relationship would be like. I knew people love their nephews and nieces and that his other aunts and uncles were able to say they did without batting an eye. I went to my room feeling frustrated and confused. I had been looking forward to being a Fasta and it seemed I was already messing up at it.
“People have called me a kid magnet. Children seem to gravitate towards me and enjoy being with me. I enjoy them as well. Despite the fact that my nephew was only 4 months old I did feel a certain sense of pride as I observed how well he kicked his legs around at the gym-toy babies have for kicking. I felt more feelings which I couldn’t identify when I looked at him sleeping, I even took my friends in to admire the marvel of him asleep. Maybe if I didn’t have autism I would have concluded that all this did in fact constitute sufficient grounds to say I loved him.
“Pictures taken at that time with he and I show a softening in my face that is positively maternal. Journal entries reflect a marvel for even his simplest behavior. I spent a lot of time walking with him in the neighborhood, thinking about all the things I would teach him as he grew older. I felt equipped to handle my anthropological duties towards him. It was only when others spoke about him that a fear in me would surface that I was an inferior brand of aunt. That no matter what I had to teach him and how fierce my desire was to protect him until I could repeatedly say how much I loved him in a conversation I would not make the grade.
“Fortunately time passed. My own range of breadth of feeling was on a steep learning curve at this same time. With each subsequent visit I moved closer to knowing I loved him. I started to be able to do some of the things I had imagined. He learned to speak and could express marvel over issues that I did not really expect a child so young to notice or have thoughts about. One day at the zoo we passed the exhibit that explains poaching. I thought that he was way to young to really understand how bad it was and tried to explain it in a way that would make sense to him, but when his eyes filled with tears and he asked why repeatedly I knew he had a special soul. A soul that would require more diligent protecting and nurturing than I had thought.
“There were other signs in those days. He had an obsession for whales. One Christmas everyone seemed to know that they had better get him some form of whale or not even bother with a present.. All seemed well in his world until he opened up a whale that had the wrong color tongue. Most of us were surprised that he knew so much about so many kinds of whales but his action regarding this whale was decisive. Into the garbage it went. No amount of explaining that it was wrong to throw out a present or offering to correct this error would convince him that something horrible had not happened. He asked the perennial question of childhood although his whys were a little more detailed. Why would someone even make a model of a whale and not get the tongue color right. Well the kid had a point on that one.
“One day a few months after his maternal grandfather had died my sister-in-law phoned to report what he had said at pre-school. It was the final and convincing evidence I needed to conclude that his soul was so special that not only did I love him with all my heart, I was prepared to do battle against any who might attempt to hurt this soul. His pre-school had a no-violent-toys rule that was enforced quite strictly. A boy had ignored this rule and had a toy sword with him. My nephew told him, “Sword all you can while you are young, because you can’t take your sword to heaven because when you go to heaven you are flat.”
“Well the first two parts of what he said amazed me. The part about being flat also made sense in the context of his life. His grandfather had been cremated and scattered in the mountains. This is where the flat notion came from. I couldn’t have been prouder of him if he had discovered a cure for cancer. I thought and felt all the things that I had worried about not feeling for the first few years of his life. I rushed to get the exact quote and pinned it to my bulletin board in my most sacred spot – right above my computer. I listed his age and his title: Philosopher and Theologian.
“I have always identified with the song by Don McLean, “Starry Starry Night.” The line where it says, “the world was never meant for one as beautiful as you” hits home to me. When the world hurts mostly because it fails to understand people like myself and people with other differences I think of this and there is some comfort in the idea that it might be a question of being an excessively beautiful soul for the world in which we live. I knew immediately that my nephew too was one of these people and any last question about whether the feelings that had strengthened overtime qualified as love vanished.
“Yes it was a journey to this point. Not a love that I could say I felt with confidence on his birth but this does not make it a conditional love. I love everything about him. Many of my happiest hours are spent in his company. His excitement when I come, hearing him brag about me to his friends, his joy in the simple things in life would make any aunt proud. I know longer worry that my brand of “Fasta-ing” (pardon the creation of a word) is inferior. It is clear from his response that it is not.
“This Christmas he bought gifts for other people for the first time. About mine he kept saying it was small but precious. I had no doubt that it would be. Like myself he too seems to need symbols to represent people who are absent and his feelings for them. I was delighted to receive a piece of pyrite from him on Christmas morning. He has one similar to it. I told him that I would keep it by my bed the way his was so we would both always be reminded of our love for each other as we fell asleep and woke up. I hardly need reminding at this point though. Still that once mysterious feeling of love fills me completely when I look at this precious stone and contemplate the beautiful relationship I enjoy with my nephew.
“For those of you who may have relatives with high functioning forms of autism, when they give you not quite the answer you expect, I hope you take into account our unique perspective on the world. Particularly in the realm of emotion we may be embarking on a whole new voyage. I feel so lucky to have a sister-in-law who could forgive my atypical response, who brings it up now and then with humor, but especially for having a nephew with a soul so beautiful he brought me into new waters.”
Emma reading her favorite book – The Way I Feel – 2008
You’ve described yourself as a “nonspeaking (at times) Autistic.
“Yes, I think the phrase “nonspeaking at times” captures my experience, and also that of others who do have speech capabilities but can’t always access them. Because one can speak at times does not mean that speech is a reliable form of communication for that person. Also, when someone can speak some of the time, others may not notice that they are having trouble speaking. I have sometimes not been able to speak and other people just thought I was “being quiet” or did not have anything to say; that dates back to childhood.”
Why did you make a video of you not speaking?
“I made the video because we need to change some of the ideas about “high functioning” and “low functioning” Autistics. Not being able to speak is equated with “low functioning”. A constellation of characteristics are said to be true of only “LF” people, such as self-injurious behavior, toileting difficulties, and not being able to speak or having limited speech, while “HF” people are said to have another set of characteristics, also fairly stereotypical, such as being “geniuses” who are good at computer programming and lack empathy. These binary divisions don’t address the wide variety and range of characteristics of Autistic people, and paint a limited picture of individual Autistics, many of whom defy (not necessarily on purpose!) the expectations surrounding their “end” of the autism spectrum. I have always known I can’t speak on a regular basis, but the conversations about “nonverbal” people assume that I have a different experience when in fact it’s not so different at all.”
Can you talk about how and why you sometimes are unable to speak?
”I can’t say I speak “most of the time,” since most of my waking hours are not spent talking. I showed on my video, even when I am alone, I frequently can’t talk. I don’t need to talk at those times, but I am very aware that if I were suddenly presented with a situation in which I needed to talk, I would not be able to. I am, however, usually able to make what some Autistics have called “speech sounds,” which means that I can say something, even if it is not exactly what wanted to say. I have a number of reasons for not being able to speak at any given time. I distinguish between not being able to talk at all and having trouble with word finding, which does not make me lose speech, but can have some interesting results when I find a word that is not the right one! I can go “in and out of speech” several times during the course of a day.
The following list has some of my reasons for not being able to talk. These are not in any particular order: Sensory overload, being tired, reading or seeing something disturbing, thinking more in visual images than in words, trying to talk when other people are talking too fast and not taking turns‒which is not limited to the autism spectrum, although a lot of literature exists about teaching us to take turns. Some of that teaching is necessary, but I think it should be introduced to non-autistics as well!”
Are there other things that stop you from being able to talk?
Another thing that will stop me from being able to talk is to have big chunks of time where I am not talking because I am mostly alone, like when my son spends the weekend with his dad. After a weekend spent primarily not talking, I am not used to it and have trouble getting started again. It does not take more than half a day of not talking before I need to urge myself to take it up again. It’s the inertia of not doing it, plus I have to remind myself, consciously, of how to move my muscles (mouth, lips, larynx) and intentionally will myself to speak, which does not always work. Sometimes my son will ask me “Mommy, are you having a hard time talking?” and if I manage to say “Yes,” I am able to start talking again, although I can have a hard time formulating sentences and finding words for a bit.”
Of all the items on the list, which ones affect you the most?
“The thing that will stop me cold, suddenly switching from being able to speak to not being able to utter a word is seeing, reading, or hearing something that is disturbing. I write indexes for nonfiction books. Some of them have very graphic descriptions of things like genocide or war. I did my “make myself talk experiment” on a day when I was using voice recognition software to do data entry for a book that had ten chapters of very disturbing material. I used VRS a lot at that time to save my wrists and fingers for playing the organ. Since I am a visual thinker, not only was I reading it, but also seeing it in my mind, like an awful movie that I did not want to watch,. I found myself typing instead of dictating, and realized I had been doing so for maybe half an hour. I said to myself, “Why did I switch to typing?! I don’t want to be typing!” and my experiment was underway. I spent the next two hours trying to make myself talk, with no success. I was online at the time, so was typing to people telling them about the experiment. Some of them were a bit concerned that I was trying to force myself to talk when I couldn’t, but I needed to find out if I would be able to talk if I tried really hard. My answer was provided after two hours, in the form of a small squeak. That’s the only sound I could make after all that trying. I had two realizations as I finally ended my experiment, still not able to talk except for that squeak. The first was that it reminded me of when I had an epidural for a procedure and tried (yet another!) experiment to see if I could wiggle my toe. The doctor got “mad” at me and told me I was actually wasting physical energy I would need to recover from the procedure. I had the same feeling of exhaustion from trying to make myself speak. The other thing I realized is that maybe I should be carrying an autism card with me in case I was at the scene of something upsetting, like an accident or crime, and could not talk to first responders. Some things that I find disturbing and thus making me not able to talk are not that dramatic. It can be someone saying something that I did not expect them to say (not limited to “bad” things) or anything unexpected or surprising.”
What are your earliest experiences of not being able to speak?
“When I was a child, there were many times when I could not speak. I think very early on, I was not very aware that I could not talk at times; I simply did not talk when I couldn’t. I definitely spent a lot of time looking at things like dust motes in the air and the thread on my blanket and other tiny little interesting things; I have no idea if anyone tried to talk to me and got a response, how fast a response they got, and whether or not I was conscious that I wanted to say something but couldn’t. In later childhood I was more aware that I was both not speaking and wishing I was. I attributed loss of speech to being “shy,” and was angry at myself for being that way. I spent quite a few decades having times of not being able to speak, including the entire day once, and being angry at myself for not being more “brave.” Reasons include some social ones, such as being afraid of another person for whatever reason, feeling “on the spot,” having a particularly anxious day, people interrupting me. I think people were not aware they were interrupting me, as my speech was so tentative. Other reasons include being tired, having more visual thinking and not the accompanying language-based thinking, since my thinking is visual with an audio soundtrack and the soundtrack sometimes drops out for whatever reason. Sometimes the lighting or the color green will render me speechless. I love green! It is very mesmerizing! It often makes me unable or disinterested in speaking, especially the green of a large field of grass. Eeeeeeee!!!!!”
When did your views regarding your inability to speak at times change?
“After I learned about autism, I started thinking more about the reasons I lost speech. I met people who either could not talk at all, could not always reliably access speech (like me!), stuttered (like me, again), had trouble finding words, or had to say other words, circling around until the right one was selected, such as one of the “big words” I used to get teased about in school.
One of my ongoing word-choice problems is “French toast.” Early in the morning, I can’t think of “French toast,” for some reason. I ask my son if he wants “Um, um, um, um, …. uh… (then I draw a square shape in the air, since I can see the French toast clearly in my mind) … um, square things!…. French toast!” Since my son now knows that “square things” means French toast, sometimes we just stop at “square things” and he says yes or he will say, “Mommy, I want square things!” and we laugh and I make the French toast.”
Does it trouble your son that you can’t talk at times, or have trouble saying what you mean?
“My son is very good at talking about things he doesn’t like, but I don’t assume that he would feel entirely comfortable directly telling me things he doesn’t like about me. The things he does say indicate support rather than discomfort. A few times I have been annoyed at myself for stuttering and he says “Mommy! Don’t ever be mad at yourself for stuttering!” or, a few times, “Mommy. Stuttering. It’s a way of life.” I don’t not-communicate with him, so he does not feel ignored. I use alternative ways of communicating with him, just not talking. I write, point, use some of my extremely limited repertoire of ASL signs. I once was writing to him about what to wear to church and he wrote back “Yes, mother dearest!” He (as is true of most people I write to) matches my communication mode and writes back. I have written to him (and to others) “You don’t have to write to me; I can hear you!” He has noticed, and told me, that when he comes back from visiting his dad I “seem different.” We have talked about his coming back as a transition point- the house is suddenly noisier, and definitely “talkier.” I have often said that my child talks to think, so we are quite different in that way. I am working on what would make the transition from “kid gone” to “kid in the house” an easier one for both of us.”
For people who do not have difficulty speaking, they may have trouble understanding how someone might be able to speak in one situation and then not able to in another. Can you talk more about this?
“Some abilities are not there every single time a person wants to access them. This is true for all people, but for an Autistic person, these fluctuations in abilities and access to abilities might be more pronounced. If I don’t play the organ almost every day, it’s almost like I forget how to play it. That’s why I always practice on Saturday night and Sunday morning before church. There is no way I can go in there cold and play like I want to. Think of something like delivering a presentation. For most typical people, there will be good days and bad days, presentations you wish you could do over, and days when you were really “on your game.” Or, think of your favorite sports team and player. Some games are not so good; other games the team really does well. But playing the organ or hitting a home run is not an essential life skill (ballplayers and organists feel free to disagree!). But when it comes to anything considered really basic, like being able to talk, a sense of mystery surrounds the topic, when a person can do it one time and not another. I maintain that it’s not that different anything else, but is more noticeable and pronounced when it’s something that is expected of everyone, and when one can do that “expected thing” most of the time. Maybe for some of us talking is an extreme sport, in the sense of having to really work, practice, try hard, take risks, and think consciously about what we are doing, whereas for some people the ability to talk is very natural and not even a conscious effort.”
Talk about the idea of language and thinking.
“I have read more than one author who opines that without language there is no thought. Nothing could be farther from the truth. Language includes both written and spoken words, as well as picture-based communication systems like PECS. Not talking (and also not writing) does not equate with “not being able to think,” “being lost in an unknown world” or anything other than specifically not being able to talk. For some people it could mean a lack of focus on “the present moment” (how many people are fully present in each moment anyway?!) or not being able to think in words, which is another one of my reasons for not talking. But it is not, generally speaking, accurate to assume that because someone can’t talk, they can’t think. You wouldn’t look at someone who has a tracheostomy tube and go “Oh wow. That person can’t think!”
What is it like when you’re unable to speak while in public and are expected to?
“It’s a bit nerve-wracking, but only in situations where people do not know me well and are expecting that I can speak like a non-autistic person. I try to anticipate what I will need to be able to communicate at those times but I can’t always build in my own supports. When I am with friends, it’s no big deal if I can’t talk or can’t talk much. In work situations it’s more difficult for me to feel calm about it. Unfortunately this expectation is not limited to people who don’t know much about disabilities, so that I have had to really struggle at autism-related events where there really aren’t accommodations for Autistic ways of communicating. It’s an ongoing process for nondisabled people to learn about communication differences and to anticipate them so that Autistics and other people with communication disabilities aren’t doing most or all of the work to create our own accommodations.”
How do people react to you?
Really, I mostly don’t get reactions, because often the times that I can’t speak coincide with the other person continuing to talk, maybe because they think I don’t have anything to say, or that they are like “Well, if she’s not going to talk, I will!” I do get all kinds of reactions, from total acceptance to “you could if you wanted to- try harder” kind of thing that made me feel sad when I was making the video. Sometimes people don’t believe me when I say (in speech or writing!) that I have trouble talking. I have to be very clear that I mean not being able to talk at all. I have learned that “trouble talking” might mean not saying the right thing, or stage fright, and “I can’t talk right now” can mean “I am too busy to deal with you” rather than that I literally an unable to speak with words coming out of my mouth! I have had a few mixups when people did not know I meant “I can’t talk right now” very literally. Sometimes people just don’t quite believe me and think I am making it up. I am not sure why they would think I would go to that much trouble! There are also people who have never heard me stutter, who think that I don’t, even though I tell them I do. They are going to get treated to another video in a few weeks! I was finally able to capture myself stuttering at a time when I also had the webcam with me.”
Are there things that help you speak after a period of not speaking?
“I mostly just have to wait. I don’t particularly want to talk a lot, but I need to. It’s just one of those things that is expected, and it is expected that if I can do it some of the time, I can do it all of the time. It might seem that someone who can speak but loses speech at times would want to find ways to prevent speech loss, but I often welcome not being able to talk. It gives me a break from the exhausting task of speech production. My idea of the perfect conversation and this is ideal for a number of my Autistic friends, too, is two laptops or mobile devices or text-based equipment, but we can be in the same room together writing to one another. I don’t get a lot of this because I live in a rural area and most of the people I write to are long-distance. Some friends locally are very accepting but we don’t have any alternative setup other than me scribbling on paper. I also get way overloaded by hearing other people talk, as it challenges my auditory processing abilities and I can only take so much talking. If other people, whether or not they can speak, would type to me, I think I could get a lot more accomplished with the interaction with that person. Or, at least I think I could. If writing is not that person’s strongest form of communication, it will be a limit for that person. We should not be expected to always accommodate “talkers” and not the other way around. But it does take extra effort on my part because people can’t tell just from looking at me that I am a person who sometimes can’t access speech.
Ideally, we could take turns using each person’s communication strengths and weaknesses, assuming we are able to do that much. Of course, sometimes it just won’t work.”
I am in Baltimore at the AutCom Conference. Since the conference begins first thing in the morning, I arrived yesterday afternoon by train. As I waited for the shuttle service to arrive I witnessed a group of men yelling at each other. Suddenly one enormous man lunged at another, grabbed him by the throat and began to strangle him. Several other men jumped in, amidst lots of yelling and swearing and finally were able to pry the two apart, only to have the one who had been strangled race after the strangler, shouting descriptive words which I cannot repeat, mostly because other than a few F bombs, I couldn’t figure out what he was saying, though by the look on the attackers face, they weren’t friendly. After witnessing two men practically killing each other, I was greatly relieved to see the shuttle pull up to whisk me away.
The van driver stopped only once to pick up a party of six elderly men who were off to a business retreat. The one gentleman seated next to me after having an animated conversation with his wife, though I’m not sure about her identity, but was clearly someone he knew well and felt comfortable hanging up on – twice – and then called back. Exhausted from all that, he promptly fell asleep listing so precariously in his seat that I feared he might just keel over completely. I scooted as far away from him as was physically possible lest he fall into my lap like a felled Redwood.
The drive was otherwise uneventful. Much to my delight the hotel looks out on a beautiful lake where I saw this… I believe this is a White Egret. I could be wrong, but in Northern California, where I grew up, I remember seeing one once and it looked a great deal like this.
A panoramic view of the lake.
Sculpture with the lake in the background…
The conference begins at 9:00AM this morning with a welcoming ceremony by Ari Ne’eman, followed by a keynote address by Jennifer Paige Seybert. I intend to then go to Julia Bascom and Savannah Nicole Logsdon-Breakstone’s presentation – The Loud Hands Project. However Larry Bissonette, Pascal Cheng, Harvey Lavoy and Tracy Thresher (of Wretches and Jabberers) are also presenting at the same time, and I’d love to hear them too. The entire conference is a who’s who of wonderful presenters. I don’t know how anyone is able to choose!
It’s all very exciting and I’m so happy to be here!
This is how Ibby describes her blog: ”The purpose of this blog is specifically so people can ask me things that may not come up on other blogs, which I completely recommend reading. But let’s say you have a burning desire for the answer to a question that nobody blogs about that week? Come here and ask it in the comments. You can do that right now. I might answer myself, and I might also remember that my friend told me about it a couple months ago, so I could answer from multiple viewpoints in conversation. Also, I may be able to give you a study about it that isn’t insulting and eugenic and horrible.”
This is how Ibby describes herself: ”I’m an Autistic member of the Community and an education professor…”
Ib is an educator. She teaches educators. Not only that, but Ibby is patient, incredibly kind, nonjudgmental and one of the funniest people I’ve ever met. Seriously. (I love saying that after saying someone’s funny…) I know Ibby’s blog will soon have more questions than she’ll have time to give, so I’ve already elbowed my way in there and asked her a question in the comments section! If you want to ask her something go over there NOW and get in line, because I have a feeling that line is going to get pretty long, pretty quickly!
Just to backtrack a little… Most of you have heard me talk about Ibby. We met at a Disability Conference here in New York City where she was presenting last spring. I wrote about meeting her ‘here‘. It was one of those magical moments when you meet someone and you just know instantly, you just know there’s an immediate bond, an indescribable feeling of closeness that defies explanation. That’s what it was like for me when I met Ib. She flapped, I allowed myself to do a tiny little, tentative bounce on my toes, nothing that would call attention, (I was new to the sensation, had not allowed myself to engage in such behavior since I was a kid, but it felt GREAT!) and we hugged.
After that first meeting we kept in touch. In fact, we began “talking” aka IMing each other once or twice a week and then we began talking several times a week. We talked about autism, I asked her if I could ask for advice about Emma and she graciously not only agreed, but patiently explained and re-explained things I found difficult to understand. Over time we began talking about ourselves more. I began to talk candidly with Ibby about my guilt over the things I’d done, the various therapies, the remedies and Ib told me more about her life. This was a post I wrote after one of our epic conversations. (I hadn’t asked Ib if it was okay to use her name at that point, so I didn’t.) We found we had similar senses of humor, we went off on whole riffs together, and I laughed. I laughed with Ib as I hadn’t laughed in a very long time. As our friendship grew, so did my hope. Now, if too many days go by and I haven’t been in touch with Ib I feel a little off, a little melancholy.
All of this is to say, Ibby is rare. She’s brilliant and really, really smart, which aren’t the same thing. You can be brilliant, but not very wise. Ib is both. So go over to her blog and ask her some questions, because honestly, I can’t think of a better person to go to.
Totally unrelated photo taken by Richard of Em at MOMA
