Poetry is ballet in words.
Graceful, agile words, yawning and leaping while whispering and shouting all at once.
The ending is the beginning
like water colors
I had no access to any of it
no way to share the beauty
alone
the dance
with no one to answer or interact
I was alone in the intense happiness
but now
I can choose to dance with others
when I want.
Posted in Autism, autistic, communication
Tagged alone, ballet, Communicating, dance, happiness, joy, non-speaking, poetry, speaking, together, Typing, unreliable speaker, Words, writing
Ariane: What should we start our day with? German, a blog post, general writing, fiction, poetry or something else?
Emma: Just start with blog post.
A: What would you like to post about this morning?
Emma: How about the topic: Knowing many things, but having no one believe you are able to understand.
Ariane: This is a great topic! Do you want me to say anything or keep quiet so you can continue?
Emma: I will continue.
For many years this was the title of my life. It was long hours bloated with mindless screams of nonsensical searing memory words that no one understood the significance of. The feeling of pleased joy when another believes, and then astounds the non believers by interacting with their knowing, is like beams of brilliant light shouting through the dreary darkness. Diving heavy waters it cannot be described, but the word coming closest is love, and to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught. This might help the misunderstood.
Ariane: Wow, Emma, that’s really beautiful. What else?
Emma: You can add commentary now.
Ariane here adding commentary, which is a little like being asked to perform after The Rolling Stones just rocked the house…
I am always struck by Emma’s words. It is the force with which she writes and the compelling word choices she makes that convey a depth of emotion, an intensity and complexity of feelings, as well as insights that make me stop and reread her words over and over. This paragraph took about forty-five minutes for her to write, not because she edited or had to go back and rewrite, but because that is how long it took for her finger to locate the correct key one letter at a time.
“Nonsensical searing memory words…” I so want to know more about this. Does she mean the often repeated sentences that are about the past, the words I once assumed were simply memories thrusting themselves front and center? A kind of Möbius strip of thought, like an infinity symbol wrapping around and around itself? I have learned to reside in the unknowing, the discomfort of being unsure, the scratchy realization that I cannot ever truly know, though I can make guesses and then ask if these are correct. I no longer assume words spoken are meaningless or simply memories or are scripts that are being blurted out compulsively and without thought. I’ve written about these bridges before ‘here‘. Those words and sentences that are full of meaning, but whose meaning is not immediately apparent to me upon first hearing.
“… that no one understood the significance of.” I will ask her about this later. She used the past tense and that makes me hopeful that we are not continuing this kind of awful misunderstanding. “…beams of brilliant light shouting through the dreary darkness.” Who among us does not want that feeling for those we love? Is this not what love is? Connection with another?
“… to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught. This might help the misunderstood.”
Those who think being silent for an hour or two will give them any real insight into what it is like to not have words readily available, either by writing or speaking, cannot possibly understand. We must shift our thinking beyond the hour or two, beyond the day, beyond a month, but instead try years. Years of opening your mouth to speak, but having words tumble forth that are not what you intended, or saying something you intend only to have it misunderstood, or repeating a memory because it conveys so much that is relevant to the NOW only to be asked to discuss more about that particular memory and not what it signifies, it’s deeper meaning. To say words, to write words only to be told you do not understand metaphor. To reach out in vain to connect with a world that continually turns its back or mouths that smile with faces flooded with fear, or superiority or judgement or intolerance or disgust.
End of commentary.
Ariane: What sort of image should we put with this post?
Emma: How about a photo of the two of us. Daddy can take it.
Ariane: I was thinking we could title this post: “Knowing Many Things” and the Impact of Disbelief From Others. What do you think?
Emma: No.
Ariane: Okay. What would you like the title to be?
Emma: The Impact of Believing in Incapability
February 3, 2015
Posted in Autism, communication, Parenting
Tagged autistic, disbelief, incapable, knowledge, non-speaking, presume competence, presuming competence, silence, speaking, Typing, unreliable speaker, Words
First – here is the video of Emma’s and my presentation at the ICare4Autism Conference on July 2nd in New York City – “My Body Does Not Obey My Mind”.
Emma ended our presentation by singing one of her favorite songs, You’ll never see me again. We uploaded this separately and changed it from “public” to “unlisted” as someone has already given her singing performance a “thumbs down”. As with anything that is “public” on the internet, one can expect to get those who are so troubled and filled with self-loathing they cannot control their wish to hurt others.
We may make a new video that includes both the presentation and her singing. At which point we will remove this video of just her singing performance so that only those who watch the full presentation will be able to watch her singing at the end, but have not done so yet. In the meantime here it is, though this link may only work until we’ve made the new video.
As Richard edited the video of our presentation I became uncomfortably aware of how, in my desire to amplify Emma’s voice, I tried to keep her from applauding and kept trying to read her words over the applause. This presentation was the first full length presentation we’ve done together, so there were a couple of things I will be sure not to repeat next time. In addition to my issues, the font size needed to be about 30 times larger for such a big room and the activated voice needed to be miked and next time you can be sure I will be applauding Emma right along with the audience, waiting until the applause died down before attempting to read her words.
This morning I was reminded of how Emma, when asked, “How old are you?” will, without hesitation and in a matter-of-fact voice, say, “Nine.” If I give her the keyboard she will then type, “I am 12.” When I asked her to talk about what it was like to say something, knowing it wasn’t “correct.” She wrote, “Hearing myself say words that cause confused reactions, solidifying doubt, makes people befuddled and causes me anxiety.”
I asked Emma if she was willing to say more. She wrote, “The words are not friendly when they march purposefully from my mouth, ignoring my brain’s direct orders, like obstinate and unruly toddlers defying all. Words pouring forth like water after a dam break, do not pay attention to me. I am so used to it I no longer fight. I dread the smiling talkers who insist on spoken language as proof of being and serious thought. Humor and a reminder to not take themselves so seriously is my loving suggestion for all.”
I asked Emma why she chose this image for today’s blog post. She wrote, “I was so happy riding the horse and this post makes me happy too!”
Awhile ago Emma wrote, “Talking is hard because I like to say silly things that people take seriously and that is why I am misunderstood.”
Yesterday Richard referenced Emma’s “silly things” but without the full quote and I think some may have read his words and thought he was suggesting her spoken words were silly, when he was actually quoting Emma. But the context is everything and when Emma wrote the above, it was about written language versus spoken. I was reminded of my friend, Leah Kelley who has a blog, Thirty Days of Autism. About a year ago, Leah posted a video that I thought so hysterical, I had to share it and have since watched it many times. It’s called Bulbous Bouffant.
I dare anyone to watch this video and not smile. Me? I laughed out loud. Did any of you join in, saying the words out loud? I did. Was this silly of me? YES! I love silly. Silly is way under rated. How much more fun would we all have if we could engage in conversations like this one? Those of you who hate clicking on links, you’re going to have to… go on, just do it. It’s hilarious.
We live in a world where this sort of conversation is not exactly encouraged. In fact, most people, if they encountered such a person while waiting for the bus or subway would probably try to politely extricate themselves from such a conversation. Someone who spoke, as the person in the video does, would be thought odd and would be avoided. He might even frighten people.
A few months ago, Emma wrote, “I am intelligent and cannot speak with the same brilliant words that are in my mind.” And I understood completely what she was saying. We need to show that we are intelligent before we can lapse into the silliness of enjoying the sounds of a word, simply because it’s fun, or admit that a word makes us happy, not because of its meaning, but just because of the way it feels and sounds while saying it. Intelligence first and then silliness can ensue, but if intelligence isn’t proven, then silliness becomes “inappropriate” or “weird” or any number of other words we use when we think someone is not like us and less than.
Yesterday Emma wrote, “I troubled you when I intended to talk and words told different tales than I thought.” I have to say it made me sad to read her words because she’s right, it did trouble me, and had I known how bright she was, I would not have been so troubled. But this is also a problematic statement because it’s focused on perceived intelligence and shows a definite prejudice towards those who are defined as “intelligent” versus those who are not. That actually goes against everything I believe. ALL human beings should be treated equally, with respect, love and kindness, no matter what their perceived intelligence is. And yet, my obvious prejudice is there and so this is something I will look at and be more aware of. Without awareness, I cannot change.
So when Emma then wrote, “I realize any words are valued more than silence” I understood her to mean her “written words” because those are the words we applaud her for, those are the words we quote and talk about, those are the words we say, “Here! Read this!” Partly because they are so insightful and wonderfully wise, but also because they prove, beyond a doubt, how very bright she is. But also there’s a hierarchy in our culture – the more spoken language an Autistic child has, the “higher” functioning they are deemed. Spoken language in our culture is everything.
Except what about all those people who have not found a way to express themselves? What about those who cannot express “profound insights”? Are they less important? Are they somehow less human? Are they not deserving of the same respect and treatment we so easily and readily give to those who speak eloquently and brilliantly?
“I realize any words are valued more than silence.”
Silence
Over the weekend I witnessed a young man who did not easily speak and when he did say a word, it was clear how hard he was having to work for that one syllable. Yet the people around him bombarded him with questions. Questions he could not answer with spoken language, but that did not stop them from asking. When he managed to make a sound resembling the answer they wanted, they would pause for a moment before asking him another question. After about ten minutes of this he retreated into what looked like a sensory friendly room, where he rocked gently back and forth, holding his hands over his ears. Even so, the questions continued.
Another boy who was having his lunch was told during a ten minute time period to “look at me” more than a dozen times. He too could not easily speak and was asked a great many questions. Things like, “Is that good?” When he said, what sounded like, “Yes,” the other person said, “Look at me. Stop. Put down your fork. Look at me. Is it very good?” When he again said, “Yes,” he was allowed to eat his lunch for a few seconds in peace before the next question came.
People often ask me why I object to ABA therapy. It is not only ABA therapy that I object to. It is ANY therapy that treats another human being as these very well-intentioned people were treating these young people, all of whom were teenagers. I object to the way so many, who are in the field of autism are trained and how that training affects how they speak to and interact with people who are autistic. I do not, for a moment, doubt that they believed that what they were doing was good and ultimately helpful to the kids they were working with. Yet each one of them was unconsciously or not, treating those kids as though they could not and did not understand what was being said to and about them. The kids were not being treated as one would treat their same age non autistic peers.
On the Presume Competence – What Does That Mean Exactly – post I wrote, “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.”
What I saw was fairly typical of what I see often – well-meaning people who are working with autistic people, but who do NOT presume them competent, not really. Had I said something to any of these people, I’m sure they would have expressed surprise with my observations of what they were doing and how they were interacting. I would even guess that they would have told me that they were presuming them competent. These were not mean people, they were not sadistic people, these were people who believed in the training they’ve been given and believed this was the best way to interact with these teenagers.
At one point the young man who was trying to eat his lunch, looked over at me and my son. My son, smiled at him and I did a little wave and said, “hi.” He nodded his head ever so slightly at us and then the person who was paid to sit with him, asked him another question. I do not doubt for a second that all the kids there were competent. In fact I am convinced of it. I know it to the core of my being as I have been around so many people who cannot speak, or who can speak, but not easily or naturally and who are all competent. But this was not how they were being treated. This idea, which is popular with a number of therapies, not just ABA, that we withhold desirable things until the person speaks as demanded, is not something I agree with because it is based in a presumption that wanting something is equated with ability and this is incorrect, even if it obtains the desired result – a verbal utterance.
Until Emma began to write, using her letter board, I had a great many thoughts about her that have proven incorrect. Until she began to express herself through those words she painstakingly spells out, I was not treating her as the exceedingly competent human being that she is, even though I often thought I was. Even now, on any given day, I do not do this as well as I’d like to. All those years of ingrained thinking are extremely difficult to change. But change I must…
A Renassaince Princess
Richard and I have conversations that other people might find odd. We have little inside jokes we think funny, but that no one else is likely to agree. We reference conversations we had years ago with a single word or sometimes even a look. It’s the same with our son and daughter. In fact, with all of my family and close friends I have at least one or two references that we think funny, but that others witnessing might not understand or see the humor. With Emma, our inside jokes often come in the form of music. We will sing to one another or utter a sentence said by someone else years ago, but that now makes all of us laugh. For no particular reason one of us will say, “Get down Angelo!” and we will collapse in hysterical laughter or instead of saying “Good morning” we will mimic the sound of a quail. The other will then respond with a similar noise and it is better than any greeting made of words.
When Emma began writing to express her thoughts, insights, and experience of life, I thought she would be so relieved to finally be able to communicate these things to us and the world. So when she didn’t seem particularly eager to write, I wondered how and why that was possible. I know communicating in language, whether it is in written or spoken form is difficult and hard work, but I couldn’t figure out why she wouldn’t be overjoyed to finally have this connection with other people.
A few months ago I asked Emma about something and she wrote, “Words are not as meaningful to me as they are to you.” I think about that sentence a great deal. Emma then told me she senses people. She wrote, in reference to a question about someone who works at her school, “I can hear her.” She then added “I feel her.” I used to be confused by these sentences, but over time I have come to believe Emma means this literally. Barb Rentenbach, the co-author of the book she wrote with Lois Prislovsky, I Might Be You talks about this as well. Emma has an acute sense of people’s inner life and as a result, having to translate all of this into words must be tedious and (this is my interpretation of what it might be like for her) a step backwards.
Richard has a theory that Emma is operating at a “higher vibration” or frequency than either of us. I have the same thought, but use the words a “higher plane,” which has the same meaning. We both believe Emma is capable of a more sensitive and intense understanding of people than we are. If I think about those I am close to, I am in tune to their vibes at a higher frequency than I am to strangers. But what if I was attune to all people I came in contact with at that same level of intensity? What if I “felt” them the way I can feel my husband and close friends? What if I sensed the essence of them before they said a word? What if the words they then said, rote responses to questions like “how are you?” were untrue?
We, non-autistics, tend to view our neurology as better, more efficient, less socially awkward, but in many ways our word-heavy way of communicating is less truthful. We say things we don’t mean. We say things we don’t believe, we agree with people we think are more powerful. We are easily intimidated. We are swayed by groups of people who share beliefs, even if those beliefs are not something we agree with. We learn at an early age to question our instincts, to tamp down our emotions, to apologize when we are not sorry, to say things we do not mean and then, once we are adults, we use words like “polite,” and “kind” to justify the lies we tell.
“Words are not as meaningful to me as they are to you.”
Emma, Barb Rentenbach and Lois Prislovsky
Posted in Autism, communication, Speech
Tagged autistic, communication, non-speaking, Parenting, senses, speaking, Words, writing
Yesterday there was some discussion about accepting and rejecting social rules. Asked to talk about the rules she would reject, Emma wrote four that she would prefer were not required and expected of her. When we returned to our hotel we discussed this further and Emma slightly amended what she’d written and added one to the list she’d made during her morning session. I’m guessing there are additions to this list, but these sessions are exhausting and I didn’t want to push for more.
1. “Giving eye contact when I don’t want to.”
2. “Being expected to answer verbally.”
3. “Being happy when I don’t feel up to it.”
4. “Keeping my body still”
5. “Trying to be Temple Grandin”
When Emma wrote “being happy when I don’t feel up to it” Soma asked, “do you feel social pressure to be happy?” Emma wrote, “Don’t you?”
So here’s my question to all of you… if you could change a societal expectation, what would it be?
Oh, and this is the eagle Emma drew after her last session…
Emma’s Eagle ~ January 29th, 2014
Posted in Autism, RPM, Soma Mukhopadhyay
Tagged Autism, autistic, communication, expectations, Eye contact, happiness, keeping still, Parenting, Rapid Prompting Method, RPM, social rules, society, Soma Mukhopadhyay, speaking, Temple Grandin
*Emma gave me her permission to write about this.
“How old is she?” a stranger asked the other day as Richard, Emma and I searched the grocery store shelves for Emma’s favorite jam. Emma was bounding back and forth between where Richard and I were standing peering at the shelf where her jam is usually located, to the dairy case, twirling her string and saying things like, “but where is it? I don’t know! It’s gone! Somebody took it. You threw it! Aw sweetheart…”
The strange man then observed, “She’s acting like a young child.”
My first reaction was to move Emma away from this person so she wouldn’t hear any more of his words. My second reaction was to go over to the man and say, “You know, my daughter understands everything you’re saying.”
“I wasn’t trying to be rude,” came the stranger’s reply.
“Yes, but in fact you were,” was my knee-jerk response before walking away. *I’m not proud of this and I know this was an opportunity for a “teaching moment” but I didn’t have it in me.*
Later, Emma and I talked about what happened. Emma told me it hurts her feelings when people do this – talk about her and say things about her as though she couldn’t hear them, or doesn’t understand everything they’re saying.
“I want to disappear when people talk about me.“ Emma wrote to Soma last September. I wrote about that session in more detail ‘here.’
People, usually, do not mean to be rude, they do not mean to say hurtful things about my daughter in front of her, in fact people do not think about what they’re saying a great deal of the time. As my daughter does not protest or respond when they talk about her in front of her, people assume she doesn’t want to or cannot understand. It doesn’t occur to them that she doesn’t respond because the words she’d like to say do not come out of her mouth in the way she intends. Until Emma was able to write her thoughts, people (including us) believed what they thought they were seeing, even though what they thought they were seeing was completely incorrect. In cases like my daughter – seeing is NOT believing.
When people do not speak, they are often viewed as not being able to comprehend things said. People come to the conclusion that if you cannot say what you mean, you must not want to, or you are unable to understand what others are saying. There’s a false logic at work here. Particularly when it comes to Autistic people. When someone is unable to speak, cannot say what is in their mind, is unable to voice their ideas, thoughts and opinions, it does not then follow that they do not have ideas, thoughts and opinions that they would like to express.
Emma ~ 2003
Emma's Hope Book 