Category Archives: communication

Have Your Voice Heard!

For my Research and Writing English class this year I have to write a paper on a topic of my choice that weaves data and data analysis with factually based interpretation of that data. My research question for this paper is:  To what extent is it possible to compare the ways in which methods of communication are being taught to autistic students who cannot use spoken language to communicate their complex ideas?

Because many existing communication methods are underrepresented in most schools, I created a survey to find out what methods students use, what they are being taught to use and how successful each is.  Additionally I am curious to know whether a student’s school allows the communication method chosen by each student to be the most beneficial, and if not, how the student then communicates their complex thinking and knowledge.

This survey uses a google form and is completely anonymous.  You will not be asked for any contact information, your name or the name of your school.

Who I’m hoping will participate:

  • Anyone, anywhere in the world, who cannot use spoken language to convey their complex thoughts.
  • Anyone who cannot rely on spoken language most of the time.
  • If you are no longer in school you can fill the survey out by remembering your experience when in school.
  • If you are homeschooled or are doing a combination of online, non-traditional-school or other learning experiences, please consider participating.
  • Parents whose child/offspring fits the description above can fill out all factual questions and those questions that are subjective can choose “other” and explain you are a parent or give your opinion and explain that it is yours.

This is the link to my survey:  Survey

I hope you will add your voice and experience by participating in my survey.  I am glad if you do.

Have your voice heard!

Banding together with our typed words,

Emma NYC

emmaschool

That’s me, Emma, at school this morning.  Photo credit: Mom aka Ariane Zurcher

 

How we Communicate – A Podcast

*This was an assignment for English Composition to create a podcast about something you care about.  This is mine after many revisions and incorporating notes from my teacher.  A written transcript of the podcast is below, but if you can, listen first!

 

Screen Shot 2015-12-01 at 4.19.00 PM

Emma – 2016  Photograph by Pete Thompson

This voice?  The one that you’re hearing read these words?  Yeah, that one.  It isn’t my voice.  It’s my mom’s.  You’re probably wondering why a teenage girl would want her mom to read what she’s written.  In my case, it’s because I can’t read what I write out loud.  There’s not a direct line between my brain and my mouth.  It’s more like an elaborate maze.  I can’t speak so people understand what I mean.  If asked a question, my mouth says things that do not answer the question.  My brain doesn’t think in words the way most people’s do.  Names of things and people get handed to me instead of the words that would make sense to the person questioning me.  Sometimes I blurt out whole sentences from another time in my life.  (Emma’s voice) “I bounce a balloon to Emma.  I bounce it back to me.”  They may be images that remind me of the person I’m with or where I am, or words I’ve heard spoken by others, things that get caught in my mind, or unrelated scripts, but that convey the exact emotion I’m feeling.  (Emma’s voice) “No more ice skating.  Ice skating’s gone.”  In any case, what I manage to say usually baffles the people I am speaking to, causing them to misunderstand me.  Not being able to speak what’s in my heart so that others are able to understand can be challenging, but I can type things that I cannot reliably say.  There are computer generated voices that say the letters as I type them and sound like this – (Computerized young girl’s voice) “I am your friendly computerized female voice.  I sound like I’m maybe five years old.”  (Another computerized young girl’s voice) “Or I can sound like this and pretend I’m British.  But yeah, it’s just not me.”  Or I can sound like this.  Okay it’s not my voice, but with some direction, Mom sounds better than a computer.

Imagine for a minute that you can’t talk to people in any way that makes sense to them or you.  Imagine if every time you opened your mouth to speak other words tumbled out.  If you are like me, you might get used to not answering people’s questions or being able to stay on topic.  So what would you do?  How would you interact with people?  Would you ignore their questions?  Pretend you didn’t hear them?  How would you express yourself?  Maybe you would try to connect with scripts you’ve memorized, things you’ve heard other people say in similar situations or maybe you’d find non-word based ways to communicate.  That’s what I do.

(Sound of footsteps, people talking and the subway)

Sound is everywhere.  I don’t have a filtering system marking one particular sound as more important than another.  Can you understand what I’m saying right now?  Mom had to raise the volume of her voice so that you could hear it above all the other noise.  My brain doesn’t do that.  It hears all sounds equally and does not discriminate.  But some people’s voices are not as dramatic to my ear as the honking of a horn.  I love the sound of honking horns.  (Horns honking and traffic noise)  Favoring some sounds dilutes others, but music has the best sounds of all.  (Body Knows Best – Anya Marina)

Music is my first language.  It is a friend who loves me unconditionally.  It’s there when I need it and does not shed a tear if ignored for some time.  Music is a positive force as it stands by my side.  I like hearing the same melodies repeated and did so even when I was very young.  It’s been a comfort to me as long as I can remember.  Music grounds me and plays a huge role in seeking my creativity as it allows me to perform as I choose to.  It’s a way to communicate; it gives me hope, tells me I am not alone and inspires me to create.  Though people respond differently to music, I believe there are always emotions involved. Music has the ability to transform my fearsome thoughts laden with anxiety and stress.  (Music fades out)  It calms me and this has been the case throughout my life.  When singing lyrics I stumble and have trouble articulating the words, (Lose Yourself – Eminem) but I can remember the sounds I hear and recreate them with my voice.  When I sing I am not apart from, but instead am part of.

Music can be both private and public, but it needs to be loud.  (Music gets louder) No one composes music in a whisper.  My body needs to feel the beat so that I can be consumed by it.  (Volume increases steadily and then fades)  When that happens I become part of the music, like another instrument or an extension of it.  I jump and dance and move.  My arms swing or are raised up and my head bops, my whole body keeps time to the beat.  I’m transported to another reality and it is in this alternate reality that I am most happy and comfortable.

At home my need for high volume can cause problems because the members of my family have differing sensory needs that come in direct conflict with mine.  (Heartless – Kanye WestMy older brother has to have music as background, while I perform alongside, so it makes sense for mine to be public and his to be private.

(Emma’s brother)  “Yeah I think it’s totally fair that you’re able to use the living room.  It’s not like you play bad music or anything.  If you played music I didn’t really like, I’ll just shut the door and go in my room and hang out.”

My mom and dad both work at home and need quiet in order to concentrate.  I am told to wear headphones, which encumber my movement and dilute my experience.  My family has worked out a solution that allows me to commandeer the living room in the evening.  For several hours I am blissfully able to indulge my love of loud music and dancing while my brother stays in his room or hangs out with my parents in theirs.

Until about a year ago I didn’t know the joy of creating music.  Until then I was an audience member, but not a participant.  My parents encouraged my love of music and hired teachers to help me expand my interests.  Guitar is beautiful to listen to, but it is difficult for my fingers to recreate the sounds flowing through my mind.  Piano is also hard and requires dedication and lots of practice, but I think it’s a better fit for me.  Singing is easy and my lack of inhibitions, great sense of tone and ability to mimic sounds I hear makes it the best choice of all.   Eliot is my piano teacher and Karen is my singing coach.  Eliot came first.

(Eliot) “Emma has a great ear.  She can learn to sing new melodies really quickly and accurately.  Recently she’s been listening to the car horns outside and sings their exact pitch.  Emma is a fun, expressive and creative singer/performer.  She brings a lot of life, passion and feel to the material.”

Karen came next.

(Karen) “Emma has really great pitch control.  She knows exactly how the melodies go whether she knows the words or not and she makes it a real point to study each specific thing that happens in the song and can honor each thing in the song by movement and she can also emulate the sound really well as far as consonants and vowels.”  

(Gimme Resurrection – Anya MarinaKaren and I have great fun together.  I feel at ease in her presence, which is important when you are learning new things and trying to be creative.

Eliot and Karen have taught me to be patient with myself.  From them I have learned how hard it is to become masterful and yet I’ve decided it’s better to love the process of learning as much as the final product.  Communicating isn’t just talking, it’s developing a connection with another.  Music connects us all.  I wrote these lyrics and composed this melody, so this voice?  Yeah, this one’s mine.

Emma sings Over and Coming
Eliot Krimsky on keyboard

The girl’s going in the bed
the girl is going inside
the girl is going outside.

Who is this girl I see?
Who is that girl I see?
Watch careful-ee-ee-ey
Listen to me-ee-ee

Over and coming and over and coming,
over and coming and over and coming

Go, go, go,
go, go, go,
go, go, go, go

Go, go, go,
go, go, go,
go, go, go, go

Find a way
to seize the day
Dare to be the leading girl!

The girl walks out the door
the girl walks in the door
the girl is a teenager.

I am the girl you see,
I am this girl you see,
Do you believe in me?
Please do believe in me.

I’m ready to fly if you let me,
I’ll go
Turn up the music and
just don’t say no.

Starting and going and starting and going
starting and going and starting and going
Starting and going

Do, do, do, do, do, do….

Can Speech Challenged Students Get an Appropriate Education?

     What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who cannot speak or who have limited speech would not immediately be labeled “intellectually disabled” and “low functioning”. We would live in a society that would embrace diversity and welcome all people, regardless of race, culture, religion, neurology or disability. Our education system mirrors our society and in both, we come up short.

     In New York City kids like me are not attending mainstream schools because we are believed to be unable to learn complex subject matter. I was sent to both public and private special education schools, specifically created for speaking and non-speaking autistic students and those believed to have emotional issues. Because I cannot voice my thoughts and so rely on favorite scripts, my spoken language causes people to assume my thinking is simple, I am unable to pay attention and cannot comprehend most of what is said to me. As a result, none of these schools presumed that I, or the other students, were competent and their curricula reflected this. At the private school I attended for six years, I was regularly asked to do simple equations such as 3 + 2 = ? When I said “two”, because that was the last number spoken and my mouth would not form the word “five”, my teachers believed I could not do basic math. It was the same with reading and something as simple as being asked to define the word “cup”. I clearly know what a cup is, but when I could not say it, I was marked as not knowing. This school used the same fairy tale, “Three Billy Goats Gruff”, for three years as the foundation of a “curriculum”. At another school, this time public, while my older brother was learning about World War II and writing essays on whether the United States should have dropped an atomic bomb on Hiroshima, my class was planting seeds in soil and asked what kinds of things were needed for the seed to take root and grow. When my classmates, many of whom could not speak at all, and I could not answer with the words “sunlight” and “water”, it was assumed we did not know the answers or understand the question. At another public school I spent months going over how many seconds are in a minute, minutes in an hour, hours in a day, but when I could not demonstrate that I understood either in writing or spoken language, it was believed I had no concept of time.

     There is no test that allows me to show the creative ways in which I learn. I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type. My mind is lightning fast. I can hear a song and then replay it note for note with my voice. I have an incredibly large capacity to listen, learn and feel. I listen to conversations around me regularly and often wish that some parents would appreciate their children more. The other day on the subway a Mom said, “Shut up, you’re being stupid!” to her son. The boy was silent and put his head down. The Mom proceeded to play a game on her phone. I have learned that everyone is delicate. In that moment my body felt tremendous sadness. I see patterns in unrelated things, such as I am able to notice every article of clothing that someone wears on a given day. People’s attitudes are reflected in their choice of clothing. When the same clothes are worn over and over, I have the feeling the wearer is stuck. People’s self-confidence increases when wearing new clothing. My expansive vocabulary is impressive. I’ve listened to how people put words together my entire life. As I have made sense of the words used, I have been able to understand their meaning, though I am unable to ask for definitions. I notice people’s sadness, even when they are smiling. I almost feel like I am violating someone because I can see inside of them and know their feelings. I’m told I use the written word in unusual and interesting ways. I have been published in magazines and blogs. I give presentations around the country on autism and gave the keynote address at an autism conference this past fall. I am co-directing a documentary, Unspoken, about my life and being autistic and I hope, one day, to be a performer.

      The best education I’ve received to date in a school is at a private non special education school, where none of the teachers or administration has been given “training” in autism or what that supposedly means. They do not believe I cannot do things the other students are able to do. In fact, though I am just fourteen-years old and technically should be in eighth grade, I am doing upper level work. I am treated respectfully by teachers and students alike. My typing is slow, but the class waits for me and gives me a chance to express myself. During a recent Socratic seminar where the students were expected to speak on the book we had just finished, everyone waited for me to type my thoughts and gave me time to have my thoughts on an earlier point, read later. In my theater class the teacher began the semester with non-speaking work. We learned about mime, silent theater and the importance and impact of physicality while performing. I have been asked for what I need in order to excel, and accommodations have been made, I know, but I hope and believe that I am not the only one benefitting from my presence at such a terrific school.

     There is a saying in the disabilities community, “Nothing about us, without us.” A complete rethinking about autism and autistic neurology is needed if special education schools or any schools are going to educate those of us who think differently. Believing in the potential of all students is not on any test. Presuming that each and every student, whether they can speak or not, can and will eventually learn given the necessary supports and encouragement is not commonly believed, but it should be. Wouldn’t it be great if autistic people’s ideas were included in designing curriculum and the tests that are meant to evaluate them. Isn’t that what you would want if you were like me?

I am Emma

“What is your name?” someone might ask.  It’s a simple question, but when I try to make the sounds that form my name, other words push and shove their way forward.  Instead, “you may not spit,” or “Rosie’s not here!” are examples of seemingly random nonsensical, declarations that come out of my mouth.  I call these utterances my “mouth words.”  They could be seen as traitors, belligerent bullies who seek the spotlight, but they are not.  My mouth words are funny to me, but misunderstood by others. My typed words are hard for me, but understood by many.  Mouth words are witty accomplices to a mind that speaks a different language entirely.  There are no words, but instead a beautiful environment where feelings, sensations, colors and sounds coexist.  I often think if all humans could experience the world in hi-res, technicolor, surround sound as I do, everyone would be happier.  I have come to understand that my mind is not like most people’s.

I am Autistic.

Many people believe autism describes a simple mind, and that someone like me has no understanding or awareness of my surroundings.  My hearing is excellent.  Things like the honking noise made by impatient drivers who think the sound of their horn will miraculously clear the road ahead is so intense I can become lost in the key of their horn.  I am compelled to imitate each one I hear.  Car horns I can respond to cheerfully.  It’s the same with light.  The harshness coupled with bloated heavy air is so intense I become overwhelmed.  I wonder if I am too aware of my surroundings.

Some people have suggested I am unable to feel empathy and assume I have no desire for human interaction and friendship.  I feel people’s intentions and feelings so intensely it can be difficult to concentrate.  I am too sensitive to other people’s sadness; it is akin to drowning or like being smothered by the weight of damp earth covering your entire body, filling your eyes, mouth and ears.  Piercing shards of past and present pain cause me to turn away or make faces or laugh outloud to lessen the weightiness.  There is no lack of empathy, but rather an unmanageable abundance that defies my best intentions.  It is during these moments that I flounder because society expects less of me and not more.  I listen to the words spoken by people who are crying or shouting.  They say things like, “I’m okay,” through tears or “No, I’m not angry,” as they clench their fists,  but their words are in direct conflict with their actions.

Others believe that I do not have feelings at all.  How do you defend yourself against such accusations?  Trying to convince those who believe I’m an empty shell is impossible.  Adding to this is my inability to use spoken language as expected.  “No, you cannot put putty in your mouth!” in answer to “what’s wrong with that girl who is crying in the corner?” does not help change the minds of those who believe me incompetent and without feelings.

If I tell my mouth to behave and demand that certain words come out, stress barks and growls, jarring my mind so that it folds in on itself and favorite scripts begin.  “You cannot throw your lunchbox at Kevin!” or “Maddie’s not here anymore” helps me control the waves of anxiety that press up against me.  Hearing my voice keeps the dark, piercing void of nothingness from engulfing me.  Clenching down on my forearm as hard as I can is another way to control the tidal wave of stress.  A complete set of teeth marks embedded into my skin might interest those in the field of dentistry, but for most people witnessing, horror probably best describes their response.

Some find self injury baffling, even terrifying and something that must be stopped at all costs, even if this means far more painful interventions inflicted by others than anything I could do to myself.  I see it as a way to care for and acknowledge the overwhelming onslaught of unruly feelings.  This idea is not embraced by “autism experts” who use words like “behaviors”, “defiant”, and “oppositional” to defend the use of isolation rooms, restraints and even electric shocks for people like me.  It seems abuse by others to prevent self injury is permitted, even applauded, though the logic is lost on me.  When my mind is caught in a downward spiral I need calm reassurance.  My frustration often expressed in screaming, repetitive scripts grind down the patience of those witnessing.  My screams threaten their kindness, I know, but I cannot stop once begun and pounding terror is all that remains.  Only the dedicated few talk of love during my episodes of furious stress and suffering.  Their love is rejuvenate and restores my faith in this awkward world.

I am exuberant, overflowing with energy and love music.  I’d rather gallop than walk, bounce than sit quietly.  I’m happiest with high volume, intense beats, jumping, arms flailing, pounding bass, total darkness or bright stage lights and a microphone in hand.  I want people to hear me.  I am as versed in making silly faces as I am in my favorite songs and my neurology.  My mind is lightening fast, hungry, logical.  I’m a seeker, determined, a lover of laughter in a body trying to keep up.  It can’t, but I’ll keep trying.

Showing kindness toward those who are different and embracing our imperfections as proof of our humanness is the remedy for fear.  Love is a small word, but allow yourself to be consumed by the sensation and the world becomes a place of infinite possibility.  I want my hard won words to give hope and inspire people to change how they think about autism and someone like me.

“What’s your name?” people ask.

My name is Emma.

2015.10.06_Emma_PT_272Photograph: Pete Thompson Photo

Poetry is Ballet in Words

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.

Poetry is Ballet in Words

Beep. Leave a Message

Beep.

Waiting for a message that cannot find its way

from brain to muscles

that connect to sounds we know to be

recognizable words with understood context.

They elude, slipping and sliding

they have no legs

slithering in the muck of misunderstanding

those words that manage to escape from my mouth are heard,

but baffle.

 

Battling it out for recognition are the silent thoughts that are not

“you need to take a turn to share

“you have to wait our turn

“you want to go fast?

“you have to share”

Words, words and more words.

She has language they say, but the language she shouts is not a language at all

buffering frustration, relieving anxiety, clouding meaning

I’d whisper if I could

but I can’t.

comment-512

Becoming Change

Change is upon us.

Look around.  What do you see?  Do you see changes in your life?

Backwards movement can be labeled bad, but sometimes it is not.  Maybe like human evolution, lasting change must be slow.

Meandering along with inevitable change benefits some, whose go-with-the-flow attitude is like starlings flying in formation, but if only a few break away, everything changes.

Have you ever watched starlings?

Here.

Aren’t they beautiful?

Oh, how I should like to be one of the starlings to lead a new way.

Starlings

Starlings

Calling All Autistic Teen Girls ~ By Emma

Emma typed this post yesterday and asked that I post it on the blog today.  Her typed words are in italics.   This post began with Emma writing, “How about a teen girl post on the blog where I see if I can find girls that want to participate in a chat?”  (She asked that I begin this post with the above sentence.)

Calling all teen girls.
Are you Autistic?
Are you a female?
Are you an Autistic female in your teens?

If so, I hope that I have your attention.
It is a time full of confusion with many unanswered questions.
You might be fearful, curious, and feeling alone.

Let’s find each other.

Now Mom helps.

My help will come in the form of setting up a private group, probably on Facebook, if one or more teenage Autistic girls show an interest.  This group has to be a place where everyone feels safe to say anything they want without fear of being quoted or spoken of outside the group.  If anyone knows a teenage Autistic girl who might like to be a part of this project, please reach out to Emma either here in the comments or privately through email: emmashopeblog@gmail.com or on Emma’s Hope Book FaceBook Page where you can send a direct message.

Emma posing for today's blog post ~ February 12, 2015

Emma posing for today’s blog post ~ February 2015

The Impact of Believing in Incapability

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

February 3, 2015

Advice for Parents With a Newly-Diagnosed Autistic Child – By Rina

The other day I read a wonderful piece of advice written by Rina, a friend of mine, who is Autistic.  Rina’s thoughts were what I wish I’d been told when Emma was first diagnosed, so I asked Rina if I could share them and she, very generously, gave me permission.  Rina’s words also reminded me of Kamila and Henry Markram’s Intense World Theory for Autism, which was the first “theory” I read that finally made any sense to me or even remotely reflected back what I was seeing in my child.

Rina told me she self-diagnosed early in 2007 after reading “The Curious Incident of the Dog in the Night-Time and was formally diagnosed in 2009.  Rina wrote, “…knowing this about myself has been the revelation of my life. I am exponentially happier, healthier, and more confident since learning this about myself. Now I understand myself!” A little later as we were discussing this post, Rina said, “I was over 40 when I discovered I was autistic, so I spent a large part of my life just thinking I was broken, weird, wrong…” Then she wrote,  “I was bullied terribly in public school, like most of our tribe, it demolished my self-esteem, I was depressed and suicidal…but not now. I am autistic and proud, awesome and I know it!”

I read Rina’s advice to parents to Emma before posting here.  Emma typed, “It nicely states what is important.”  So with that endorsement, here you go and thank you Rina for allowing me to reprint your words.

“You know what? I have lots of thoughts, and I’ve had them for a while, about what I’d like to tell parents of newly-diagnosed autistic children. Maybe I’m talking out of my ass. But this is what I’d tell them. (assuming a boy in this example, for ease of writing…)

Your child is autistic. His brain is wired differently than yours. Autism is a disability. He will have challenges, but with the proper supports, he will have a happy, healthy, fulfilling life.

He will follow his own developmental schedule. Ignore the usual “markers”. Throw them out the window. They will be of no use to you.

Try to remember, always, that your son is experiencing the world in far more detail, and with far more intensity, than you are. It will take a lot of time for him to learn to regulate sensory input. His experience of the world (meaning sights, smells, sounds, peoples’ energy, conversation, others’ expectations of him) will overwhelm him on a daily basis. Have compassion for your son. He will be unlike any other child, even any other autistic child. If you pay close attention, with a compassionate open mind, he will tell you what he needs.

There are four things that can be of most help to your son, especially while he is very young: quiet, calm, consistency, and comfort. More than any recommended (and expensive) therapies, these will be of most help to your son. He may have repetitive and/or sensory-rich behaviors, such as rocking, squeezing a favorite toy, repeating favorite words–these help him to find some order in the chaos of the world–if they do not harm him or others, please allow him these behaviors, no questions asked. If they embarrass you–well, quite honestly, that’s your problem and you need to find a way to deal with it.

If your son is nonverbal or semi-verbal, trust me that he is looking for ways to communicate with you. Behavior *is* communication. If there is behavior that upsets you, that seems tantrum-like, there are probably reasons in the environment, there are things that are causing your son pain–again: try to make his world quiet, calm, consistent, and comfortable.

Consistency: I cannot emphasize how important this is. If days cannot be consistent, give your son warning whenever something unexpected is going to happen. I am an adult, and it is still one of my stated accommodations that I need a head’s up whenever something new comes along, or I need a break so I can process the change. If you’re planning to take him along to his sibling’s baseball practice, to stop by a friend’s house, to go to a yard sale, whatever…plan in advance, tell him about it, tell him what to expect and how long it will last. You know what, I think this is common courtesy. Understand what your son needs and be courteous by giving it to him!”

compassion-energy

Choice

I haven’t felt like blogging lately.  I’m busy.   Emma is no longer going to school and we have a number of exciting projects we’re working on, in addition to the ones she is working on solo.  We are covering all the subjects any school would cover, only we are doing it according to what Emma is most interested in.  So instead of saying, this month we will read _________, we say, “Here are some books I thought might be interesting, do any of these interest you?”  And then if they don’t we keep looking, asking and seeing what clicks.

At the moment we are reading Shakespeare’s Romeo and Juliet (thank you K.), we’ll begin pre-algebra in another month or so, are studying ancient civilizations beginning with our earliest known ancestor (thank you Mom), learning about chemistry (thank you Dr. C), have a variety of craft projects, writing projects, music projects, and that doesn’t even begin to cover all the other things that come up in any given day.

In addition to all of that, German (Emma’s very specific and insistent request) is coming along nicely though we are very much beginners, so all you German speakers, please do not start commenting in German and expect a response, unless it’s something like – Meine Tochter trinkt Apfelsaft, aber ich will Wasser, bitte.  Yeah, I just wrote that…. like a BOSS!  You have no idea how proud I am of that sentence, particularly as two months ago I couldn’t have put more than three of those words together.  And even though this was Emma’s idea, I’m (obviously) enjoying myself enormously.  (Oh you have no idea!)

But the point of this post was not to itemize the topics we are learning about or to show off my German (!), but instead was to say, yes, we are busy and so that makes blogging more difficult to get to, but the bigger point, the point I was thinking of when I sat down to write this evening, is this:  I don’t have to blog if I don’t want to.  I can just stop blogging.  In fact, if I felt like it, I could say – I don’t feel like doing this anymore and that would be the end of it. But my daughter doesn’t get to just stop and walk away from her neurology and how that is perceived by the majority of people out there.

So here I am, because this is about countering all the negativity that abounds when it comes to autism.  There is stigma and prejudice and yes, oppression and people saying and doing all kinds of things to Autistic people that are horrifying and appalling and the vast majority of people in this world see nothing wrong with that.  We have to stand up and say, no.  This isn’t right.  People are being beaten down, literally, beaten, threatened, murdered and it’s not okay.  It isn’t.  Our children are growing up in a world where autism is synonymous with all kinds of awful ideas and beliefs that hurt them.

Autistic people are being shouted down, ignored, trampled on, gas-lighted, abused, treated with contempt and some fear for their lives.  Non-speaking Autistic people are routinely treated as though they are incapable of thought and if they type, they are faced with suspicion, doubt and ridicule.  Speaking Autistic people are presumed incapable of understanding others, or believed to be using their neurology to get away with something.  If they speak out in anger they are told they are being unreasonable and that this is yet another example of their neurology.   I’ve seen non autistic people accuse Autistic people of being unable to understand the nuances of an argument because they didn’t like what the Autistic person said.  One woman wrote to an Autistic friend, “Oh, you’re autistic, now I understand why you said that awful thing about that poor woman.”  Seriously.  WTF?

The intolerance some non-autistic people show those who are not like them is staggering and horrifying.  The prejudice that is out in the world is rampant and everywhere.  So as busy as I am, as much as I don’t feel like blogging these days, my daughter doesn’t get to take the day off.  She doesn’t get to say –  I don’t feel like being treated badly or differently or as though I’m not capable of understanding.  I don’t really feel like hearing what that rude person just said about me right in front of me.  She has no choice.  And that’s what this post is about.  Some of us have a choice and others do not.

My daughter does not.

Em!

Typing to Communicate & Busy Work

Typically in school life there is a certain amount of busy work that one is expected to do, forms that need to be filled out (repeatedly), words that you are expected to say whether you mean them or not, because it is what we as a society do.  “It’s just the way it is,” we are told.

However, let’s say you cannot speak and must type to communicate.  And let’s say you are in school where upon arrival you are expected to sit down, state write your name, what day of the week it is and the date.  You are also expected to say write at least one sentence about the weather and another sentence to describe how you’re feeling.   Now let’s also pretend that typing is really difficult for you and it takes you some time to do so in the best of circumstances.

For example, writing five sentences may take you ten minutes or more.  You are in a classroom with other students, most of whom speak and cheerfully say their name, the day of the week, the date, what is going on weather-wise and how they feel in under 30 seconds.  Go ahead, time yourself and see how long it takes you to give that information.   I just did -sixteen seconds and I didn’t have to think about any of the information I was giving for more than 5 seconds.  I did pause for three seconds to figure out how I would describe my current mood, and probably could have used a more descriptive word than “okay” but for the purpose of this exercise, just went with “okay” and shrugged.  🙂

But what if you can’t do this.  You cannot find the words readily and when you do, you blurt out someone else’s name or maybe you get the day of the week wrong and some of the other kids chuckle under their breath, but your hearing is excellent and so, of course, you hear them.  Maybe you see that the weather is beautiful and so you say cheerfully, “Pool!” and there’s more laughter or worse confusion and silence.  The only way you can prove that you know any of this is by typing, by pointing to one key at a time with the index finger of your dominant hand, and fortunately you’ve been given the help you need to be able to do this, maybe you’re one of those lucky few that even has someone who is with you who holds the keyboard for you and gives you encouragement.

As you look for the key or the first letter you become distracted and by mistake you hit the wrong key.  You meant to press the S for September, but you hit the d, right next to it instead.  Hitting the d completely derails you, but you know there’s a month that starts with the letter d so you spell out December.  Maybe everything breaks down from there, or maybe you’re able to tough it out and with some patience and help you are able to get back on track, you type the date and the day of the week.  You must constantly check in and remind yourself to keep on task.  You must concentrate and not become distracted.  You know you must write about the weather, something you don’t particularly care about as you know you won’t be able to go outside to enjoy it anyway, so why does the weather matter?

Still you persevere.  You say that it’s sunny outside and finally you’re in the home stretch.  You have to write a sentence about how you feel.  That’s easy.  You know you must write that you’re happy because last time when you wrote that you were feeling frustrated there were questions, questions you couldn’t answer and so you write, “I am happy.”  By the time you are ready to hand in your paper you look up and find the classroom is empty.  Everyone has gone to do “movement” or morning yoga or they’ve split into smaller groups and are reading.  Those five sentences that were asked of you, those sentences that you labored over and now have finished, no one seems particularly interested in reading.

The above scenario is imaginary, but I can still remember the busy work we had to do in school that was very similar to what I’ve described.  It was easy for me.  I answered the questions without thinking twice and I answered them in under 20 seconds.  But my daughter cannot.

If you are going to ask someone who cannot use spoken language to communicate easily, or they cannot speak at all, but can type, even though it may take them five or ten minutes to type a sentence, you better be sure what you’re asking them to write is worth their time and energy.

Typing To Communicate

Typing To Communicate

A Researcher Asks…

I speak with a researcher who says, “we need to hear the pain and needs of the parents of individuals affected by the disorder.”  She goes on to say, “Nobody else can know better what the needs of the affected person are.”  “Oh,” I say, “how about speaking with Autistic people?”  Surely they know better than any what it’s like to have once been a child.  The researcher tells me this is not their focus.  I try to understand what I’m missing, what is the focus then?  I ask more questions.  I listen.  As I listen I am aware of my heart.  It feels louder, is that possible I find myself wondering.  Can one’s heart actually beat harder?  I decide this cannot be true.  I’m upset.  I know I become more aware of my heart when I’m upset.  I try to listen to her words, but I’m not able to hear all of them.  I know I’m missing some of what she’s saying.  I concentrate harder.  My throat constricts.  My stomach tightens, my face feels warm.

I try to make a few helpful suggestions based on what I hear her saying.  But she is not interested in suggestions.  I try again.  It is as though we are speaking two different languages.  I cannot understand hers and she seems unable to understand mine.  We are becoming exasperated with one another. I try to provide answers from my perspective, but this is not the focus of her research she tells me.  The needs of Autistic people are not the focus.  I feel some confusion.  How is this research?  How can one do research if the questions are already skewed?  Isn’t research supposed to be unbiased?  Isn’t the point of research to learn more, to understand?  But we are trying to understand, she tells me.

We are circling each other with growing wariness.  The conversation began one way and somewhere it took a turn.  I’m trying to both back track to see where it changed from cordial, curious and open, to distrust, while also still listening and trying to understand what this research is meant for.  My daughter is behind me.  She drifts past where I’m sitting and stops.   She is looking up toward the ceiling, her head slightly cocked to one side.  I know she hears this conversation.  I know she can feel my growing tension.  “I’m just going to take this call into the other room,” I whisper to her.  I go into the other room and shut the door.  I don’t want my daughter exposed to more of this.

The constant barrage of words – Disorder.  Pain.  Afflicted.  These are the words the researcher uses.  These are the words, like a never-ending eddy threatening to pull my daughter down.  I once used these words too.  I once said things to others in front of her.  “You walk forward and not backward,” Emma wrote the other day.  Just before that she’d written, “…regrets are not needed.”  I owe this to her.  I must move forward and not backward.  Regret, like those words, pull me down.  I have made a commitment to become more aware of my regrets and to not allow them to keep me stuck.

I become aware of the researchers voice again.  She really wants to know, she says, about the pain.  And I lose my patience.  I tell her no one would dream of asking me this question regarding my non autistic child.  I tell her that if she is interested in understanding Autistic children, she should ask Autistic adults to describe what it was like.  She says, “Well, if you’d like us to speak to your daughter we can certainly do that too.”  But that isn’t what I suggested.

My exasperation with her has now crossed over into anger.  She compares autism to Parkinsons and I’m furious.  “Let’s not do this,” I say.  We are practically competing with each other as to who can hang up faster.  I am madly hitting the red button on my phone to hang up, but it won’t disconnect.  This would be comical if I weren’t so upset.  I have a moment when I see the humor, but it’s fleeting.  I remind myself to come back to this feeling.  Finally I stand there looking at my phone and I feel utterly defeated.  This was an opportunity to offer another point of view and I failed.  Miserably.  I go out into the other room, where Emma is listening to music and dancing.  I watch her, marveling at her beauty, her grace, her joy.  In contrast, I’m a churning mess of anger, indignation, sadness and upset.

“We are interested in the needs of the parents,” the researcher said.  More accurate information, unbiased research, questions that are not skewed to get a particular response, training that would have helped us support my daughter to communicate through typing at an early age, removing the emphasis on spoken language, abandoning functioning labels, showing me that my neurology has deficits too, that we have devised a society skewed to accommodate non autistics who use spoken language to communicate and how that benefits those of us who speak and aren’t Autistic, but hurts those who are, helping me understand that we have set up our schools to segregate a population that should be included and not excluded.  My needs?  Change the way autism is viewed and spoken of and my needs will dramatically decrease.  Help me navigate parenting an Autistic child by giving me access to Autistic people and culture.  Show me others who are parenting with love, compassion and complete and utter respect for their child.  Most of these are things I’ve found for myself, but what a wonderful difference this would have made earlier.

Research

 

Presuming Competence – Revised

Over the past few years I’ve written about presuming competence as I have come to understand it, ‘here,’ ‘here,’ ‘here,’ and ‘here‘.  Over the years my definition continues to shift or, perhaps more accurately I should say, my ability to practice presuming competence continues to shift.  I still grapple with whether I am going far enough when I  presume competence, though the simplest definition, is also the best one, which is that we presume all human beings are capable of learning if given the right supports and accommodations.  But many want to know what that means for a specific person they know or are working with.  What are those supports and accommodations?

There are a couple of universal things I have found extremely helpful.  (I’m hoping others will add what they’ve found universally helpful as well as specifics that may be particular to just one or two.)  The first is being respectful of the person and speaking to them as one would speak to any human being regardless of whether they use spoken language or not.  It may take some getting used to, because unlike someone who uses spoken language easily, you may not get a spoken reply, or you may get a spoken response that you cannot make sense of.  Either way, I have found, speaking to my daughter (and I’m now talking about before we knew all that she knows and before she was typing with us) as I would any person her age, was critical.  Explaining to her what was going on, what was going to happen next, what we would do if something we expected to happen didn’t, and including her in any and all conversations that were taking place in her presence, has been key.

In situations where a meeting is occurring, as might happen during an IEP meeting at school or with a team of therapists or with a doctor and nurse, I have found the single best thing I can do is include her in the conversation.  (I have made many mistakes over the years, so please do not interpret this as my suggesting I do all of this perfectly without ever stumbling along the way.)  So, for example, when we arrive at the place we are having the meeting, I will speak to her as I would anyone her age.  I will ask if she’s comfortable in a particular chair or if she’d prefer sitting in a different one, perhaps away from direct light, or one that might have a cushion.  Today I always sit to her right so that I can hold her keyboard for her as she types.  I make sure she knows why we are all gathered.

If others begin to speak about her (as they almost always do and will) I will then politely remind them that she is right here and has no issues with her hearing.  Emma wrote during one such meeting, “My hearing is excellent.”  These days I hold the keyboard for her to write questions she may have or to add whatever she might like.  As Emma now types with us daily and is more used to this, she will often initiate a question or comment without me asking her if she wants to add something.   But in the past, if the people at the meeting continued to speak about her as though she weren’t present or seemed completely confused by my insistence on including her, (which many undoubtedly will)  I might then say something about how hurtful and disrespectful it is to be spoken of in this way and that I’d appreciate it if they would rephrase their language.

If the talk becomes an endless list of deficits I would ask them to identify her many talents and assets and point out that constant criticism is unhelpful and destroys self-confidence and self-esteem.  If they are silent (as has happened to us in the past) and seem incapable of naming any assets, I would give them a few opportunities to learn and do better, but at a certain point, professionals should be held accountable for what they are doing and how they are behaving.  If after several opportunities, they continue to disregard my daughter and seem incapable of treating her with respect and seem convinced that she cannot understand, they do not deserve to be paid for their “services”.

Another helpful tool is a yes/no laminated card.  I used to carry one or several around with me and would ask Emma to verify any yes or no question, because she often says “yes,” but means “no”.  I found that what she pointed to with the laminated card, was almost always correct, while the spoken answer wasn’t as much.  I have since seen iPhone and iPad apps that people use, which are almost exactly the same as the laminated card I once used.  A friend of mine holds up her index fingers from each hand and says, “yes” and gestures with the one index finger, or “no” and then gestures with the other index finger.  I remember being shocked that this simple method could produce accurate answers and yet it did.  Obviously if there are profound physical issues, this may not be possible, so the laminated card might work better as one can position it so that a large range of physical movement will not be required.

Yes/No

Yes/No

 

“Music is Language of the Soul”

A friend of ours sent us a link to a short piece about stuttering and singing as something that has proven helpful for some.  After Emma and I read the piece I asked Emma what she thought.  Emma wrote, “Singing is the only time words come easily.”

When Emma was very young many of her therapists would sing various songs to her, but usually repeated the same ones, “Head, shoulders, knees and toes” and “The wheels on the bus” being the two that feature most prominently in my memory of that period.  I was curious about Emma’s memory about those songs and so asked her.

“The mistake people made was in not using music more.  Music was more beneficial than anything else,” Emma wrote.

“Even though you couldn’t articulate the few words you spoke back then, I’m talking about when you were just two and three years old, you loved singing and sang a lot.  Did you understand the meaning of the words of the songs you would sing?” I asked.

Emma wrote, “Yes.”

Did you purposefully choose songs that communicated what you were feeling?

“Music conveyed my feelings more than anything else.  I might feel something that no words can describe.  Music is the language of the soul,” Emma wrote.

Yesterday Richard, Emma and I were discussing consciousness, thinking and different ways of communicating our thoughts.  Emma wrote, “Can you think about how I sense the world and then try not to use words?  My pacifist’s stance is the only way.  Fighting requires words, pacifism does not.”

Richard then asked, “Are you saying that from your perspective you see all intelligence as being linked and one, and we, who use words, fight because we cannot see and understand this?”

Emma wrote, “You are trying to define knowledge and intelligence with inadequate words.  Intelligence is not word based.  Music and words used in song come closest.”

Summer - 2009

Summer – 2009