Category Archives: communication

Insights From a Non-Talker: Emma’s Conversation With A Friend

The following is a conversation Emma, Richard and I had with a friend of ours who works at a school.  (DF = dear friend)  I have paraphrased DF’s part of the conversation because a) I cannot type as quickly as she speaks and b) she was thinking out loud at certain points, so I just wrote the gist of what she was saying. All of Emma’s words are what she typed.  Both DF and Emma gave permission to have their words posted here.  As Emma wrote – “People need to understand.”

DF:  I’ve been thinking about your presentation (click ‘here‘ to watch Emma’s presentation) and the body/mind disconnect that you talked about during your presentation last week.  I was thinking about being respectful and making faces back at you and I know you’re smart, but I was afraid that if you can’t control your body and don’t mean to make faces, is it disrespectful to make faces back?

Emma:  Making faces is fun communication in my chosen language.

DF:  Is it also the same for the words you sometimes use?  So, if you’re saying a word like “peacock”, is it respectful to repeat it back and play with words that way?

Emma:  Playing in all ways is my favored way of interacting with people even when they don’t speak silly.

DF:  Sometimes I feel bad because I want to ask you questions because I want to know you better, but I don’t want to ask because I know how hard work it is for you to answer.

Emma:  Talkers always want words, as though everyone stated exactly what they meant.

Richard & Ariane:  (we both asked similar questions, but in different ways, this is a combined version of what we asked) Emma, I’m curious…  when you say “peacock” sometimes you are singing in an operatic voice, but other times you are saying the word over and over while also saying “peek-a-boo” so I’m wondering are you mimicking the bird or are you playing around with the words, “peek-a-boo”?

Instead of pointing to the “y” or “n” for yes or no, Emma pointed to the letter, “w”.  This led to a quick back and forth between us, talkers, about how Emma rarely just answers yes or no when given the opportunity to, but instead writes much more.  I even then joked to Emma, “Em, that was a yes or no question.  You can just hit “y” for yes or “n” for no!”

Emma:  Word play is joyful and I think obvious joy is had with both associations.  Decision to sing while thinking about birds with peek-a-boo tail  feathers brings happy feelings.

Ariane:  Oh my gosh, Emma!  That’s so amazing.  The tail feathers look like hundreds of eyes and they are only fanned out at particular times!  So this wasn’t a yes or no question after all!

We then discussed peacocks, their beautiful plumage and how we often thought we were asking a yes or no question, only to realize how wrong this assumption is.

DF:  Okay, so here’s a problem that many teachers have at school.  A lot of times kids your age or older have fascinations with things that talkers think are inappropriate.  Things like a teenager who likes Teletubbies or wants to carry around a stuffed animal or wants to talk about Thomas the Tank Engine.  We want to be respectful and treat that kid like a mature teenager, but we don’t feel comfortable talking about Teletubbies or Thomas the Tank Engine.

Emma:  This is their fear of indulging a mind that they suspect is simple, but someone who is known to be brilliant would be thought eccentric.

DF:  Should I defend their right to explore their interest in school?

Emma:  Yes, expressions are not threatening and harm none.

*Quick aside – using interests as the gateway to other academics is how many homeschool/unschool .

Richard:  In the past, while watching you type, you’ve made faces at me and I’ve made faces back and was told not to do that.  But I’ve seen you making faces and you still are able to type, should we feel free to make faces with you while you’re typing?

Emma:  This is a difficult answer because I prefer to make faces, but I know how much you want to talk.

R:  What I meant was, do you enjoy having someone make faces back while you’re typing or would you prefer they did not?

E:  I would love to just make faces and not type.

*Another quick aside – so this is the ongoing struggle of all parents it seems to me.  It’s those grey areas when we ask our children to do something, even when they may not always want to.  For us, we put boundaries around typing sessions, so there is a clear beginning, middle and end.  As with most parents, we hope our decision is the right one.

Ariane:  Talk to me about when you say to guests, “good-bye”.  Often you say it shortly after they’ve arrived, sometimes immediately after they’ve finished dinner.  You can clear the room in seconds because they think you want them to leave.  But do you want them to leave?

Emma:  Saying good-bye to some is because I think they need to go, but other times I am sad and say it because I don’t want them to leave.

*Emma then made a sad face and pretended to cry.

Richard:  That’s a good face to make when you’re sad that they must go!

DF, Richard and I circled back to DF’s question about students who have interests in things that the non-autistic educators deem not age appropriate.

Emma:  It’s hypocritical though, because I was often given very young books, more suited for a toddler.

 

I asked Emma what image she wanted with this post, she typed, "google - "talking" and then chose this.

I asked Emma what image she wanted with this post, she typed, “google – “talking” and then chose this.

The Battle…

“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience.   Those families are in an ongoing battle.”  

The above is a version of a comment I’ve read countless times over the years.

Aside from the curious conflation of the first part of the sentence discussing Autistic people’s sense of themselves, to the last part, which discusses the family’s point of view, as though the “low functioning” individual is incapable of having a point of view, there is no point arguing with anyone about their lived experience. However, do not make your experience mine.  This is NOT my experience of my child.  This is NOT my family’s experience.  This is not the experience of many, many families I know.  And do not assume this is my daughter’s experience either.  Just because this is the way you view your child or sibling or relative or the person you know, does not mean that is their experience of the world or their family member’s experience.

I do not assume that because I choose to celebrate my daughter, every family and every Autistic person will agree or feel the same.  Nothing is as simple as any one-word descriptor.  The ongoing battle I find myself in is with the inaccurate information about autism and Autistic people.  The ongoing battle is not my daughter’s neurology, it’s the misperceptions people have that they then apply to my daughter.  The ongoing battle is not about her at all, it’s about functioning labels, what people continue to say and believe autism means, how people view disability, the stigma attached and how people fear, reject and punish what they do not understand.

That quote?  That is exactly what I am battling – the idea that because someone cannot use spoken language, they do not have an experience of the world, the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy, and therefore excluded.  Exclusion is the battle.  Non-acceptance is the battle.  Intolerance is the battle.  Hatred is the battle.  Prejudice is the battle.  Discrimination is the battle.  Misinformation, inequality, superiority, arrogance, ignorance, and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon, that’s the battle.

USA-in-chains-610x400

Using Words to Describe What Cannot Be

This morning, in answer to the question, “What shall we talk about?” Emma wrote:

Today I am going to talk about using words to describe things that cannot be described.

How can it be done?

It is the poet’s attempts that come closest, but even then, much is left to the reader’s interpretation.

Poetry becomes an interactive experience then, with the poet having to cede all control of words created.

Real creating asks question of all.  The answers are unknowing.

From Ariane:  Last night I dreamt I could not speak.  I was at the airport, leaving for the Far East and realized I had left my passport at home.  I kept reminding myself this was a dream and that I could recreate the story line.   I didn’t have to stay in the feelings of intense anxiety the dream was provoking.  I could speak if I could just change the dream. I didn’t have to follow the dream’s labyrinth.  Straining against all logic, I tried to fly, literally, back home, but kept being pulled back into heavy traffic and the anxiety of knowing I would never make it home and back to the airport in time for my flight.  Not being able to use my voice to tell the cab driver where I needed to go, without pen or paper to write, I felt intense frustration and then rage.

Knowing I would miss the flight, knowing my family was at the airport waiting for me, and the nagging, ongoing critique of how foolish I was to have forgotten such an essential document as my passport made me finally wake up.  It was one of those dreams where you are so horrified by it, waking at three in the morning becomes the more attractive choice, superseding the desire to continue sleeping and the knowledge of the inevitable consequences of waking at such an early hour.

Those feelings, like so many incessant and blaring alarms, jangle the nerves, and linger long after sleep has yielded to wakefulness.  And then Emma wrote the above and I was reminded, once again, of how often words fail us.  How often things said are misinterpreted, or said in ways not meant, or how even for those of us fluent in spoken language, words can become a kind of cage from which we cannot and do not easily escape.

Richard has been editing the video of our presentation.  Hoping to post it over the weekend or on Monday…

Emma chose this image after typing in "words" into Google search

Emma chose this image after typing “words” into Google search

A Traffic Jam and an Analogy

Yesterday we had to rent a car (we New Yorkers often do not own cars, one of the many wonderful benefits of living in such a vibrant city!) to go see Soma, who was about an hour outside of the city.  (For more about Soma, you can click on her name above, which will take you to her website for the Halo Center.  You can also read more that I’ve written by typing either Soma and/or RPM into the search box on this blog.)  We thought we’d given ourselves plenty of time by renting the car almost two hours prior to our appointment, but as luck would have it a lane was closed due to an earlier collision and coupled with the ongoing and seemingly never ending road work on all and any highways in and out of Manhattan, we realized we would be lucky if we made our appointment at all.

When we pulled up, Soma was waiting, we were exactly two minutes late(!) so we jumped out of the car and raced in to begin Emma’s session.  Emma wrote, “What happens if traffic never gets moving?”

Pause.

“You are stuck in a rut.  It’s like autism.  When you have the diagnosis you are stuck in stims and cannot proceed where your actions want to be.  It is always clogged like a caged mind driving through traffic.”

This morning I asked Emma if we could talk more about this as I’ve not heard her talk about autism and stims in this way before.  In fact, Emma has referred to stimming as self-care ‘here‘ and ‘here‘ and I wondered if she’d be willing to talk a bit more about this with me.  She wrote that she would.  She wrote, “Circular stimming begins in self-care and can aid focussed mind, but samples hasty stress when consumed by the stim.”

“So what I hear you saying is that the stim begins as a way to self-care, but can also become the cause of stress.  Is that accurate?”  I asked.

“Understand that I cannot always filter all that is going on easily.  My string grounds me.  Not having it can cause horrible stress, but it can also distract me.”

I asked Emma if there was anything that another person can do that would feel supportive and encouraging, but that might also make that struggle easier.

Emma wrote, “Don’t force me to put it away, but instead gently remind me to stay in the task asked.”

“Is it okay to suggest you hold the string in your left hand or wrap it around one hand so that you’re still free to type?”  I asked.

“It is nice to be helped with kind suggestions, not nice to be stripped of any say in what is being done.”

“Okay, I totally get that,” I said.  “With Soma you wrote, “What is wrong with the world?”  Then you answered your own question by writing, “In fact nothing is wrong with the world.  We are the problems.  We are not right.  We see things and create a problem.  I don’t have autism label on my forehead like Soma’s dot.”

(Emma was referring to Soma’s “bindi” the red dot Hindi Indian women often wear.  Soma, being Soma, made a joke and did not take offense.)  Emma then wrote, “But I have to walk around all my life with this label.”

I asked Emma if she’d talk a bit more about this and asked, “Do you feel if you didn’t have a diagnosis, people would treat you differently?”

“People see me, think she is different, forgetting that I have feelings like they do. If people understood what autism really is, it would not matter, but people don’t, and so it makes life much harder.”

“So it isn’t the label or the word “autism” that bothers you as much as what that seems to mean to so many people?”

Emma wrote, “This is the biggest problem and causes mistreatment and misunderstandings.”

“Thank you so much for clarifying all of this Emma.  Do you have anything to say to parents and educators who are trying to understand?”

“Keep your open mind and listen to the people who are Autistic for information about autism,” Emma wrote.

Soma and Emma ~ June 12, 2014

Soma and Emma ~ June 12, 2014

Finding Hope ~ By Emma

“Finding Hope

It cannot be found in fear, anger or when overwhelmed.

Hope must be cared for. It has to be nurtured and fed yummy treats.  Hope needs love and trust to grow.

Many people give up on hope because they are told it is not realistic and they need to face reality.

But what is reality?

Do you prefer living with hope or without it?

I prefer to be hopeful.”

*This post was written by Emma, including the title and she chose the accompanying photograph.*

This photograph is what Emma chose to represent hope.  It is a pine cone resting atop her great grandfather's tombstone.

This photograph is what Emma chose to represent hope. It is a pine cone with a metal heart, resting atop her great grandfather’s tombstone.

Emma’s Ten Research Questions

* A note from Ariane:  What follows was the result of a discussion about people who say one thing, but actually do something else.  Emma then wrote a list of questions she would like to ask such people to make sure they were genuine.

Emma wrote that she’d like to do some research on “who is faking their love of autistic people.”  She proposed that there be a list of questions.  This is the list she wrote.

1.  Where did you get information about autism?

2. What was your initial reaction after reading (the information)?

3.  How many people did you see?
a) Less than ten
b) Less than fifteen
c) Fifteen to thirty
d) More than thirty

4. What will you do if you see a five-year old Autistic person?
a) ask curious questions
b) Advise parents
c) Ignore them as if they are invisible
d) Talk to the child by saying, “Hello”

5. If an Autistic teenager holds (touches) your clothes, what will you do? (No choices)

6. What do you expect to see in an autism classroom?

7. Will you let an Autistic teenager spend the weekend with your family?

8. What present will you buy for an Autistic person?

9. Will you accept if autism is not cured?

10. Did you enjoy the questions?

From Ariane:  What struck me as Emma created this list was how so many organizations, therapy centers, schools, treatment facilities and people who have chosen the field of autism as a career and yet do not treat Autistic people with the respect and care one would show others one supposedly “loves.”  Any who suggest the conversation that continues to take place regarding autism and our autistic kids is not affecting them, is sadly mistaken.

Emma writes her list of questions

Emma writes her list of questions

“Let’s Talk About Communication Abilities”

*As always Emma gave me permission to post this.  Emma typed her words by independently pointing to the letters on a bluetooth qwerty keyboard attached to her iPad.

This morning I asked Emma what she wanted to talk about.  She wrote, “How about we talk about communication abilities.”

A:  “Okay, that’s a great idea!”

E:  “Especially for someone like me.”

A:  “Yes, tell me more.”

E:  I am able to communicate really well with words, but people don’t expect me to, so when they see me typing, they eagerly watch, but they don’t listen to what I write as much as they listen to the words tumbling from my mouth.”

A:  “I think that’s such an amazing observation!”

E:  “Know that believing in someone’s ability will be greeted with inward smiles, so you must never give the doubts breathing space.”

We talked about “ability” and the power of believing in both oneself and another versus doubting.

E:  “Many insist on finding proof, but when sitting with someone like me they only see the things I do that confirm what they already believe and turn their backs on all that would prove them wrong.”

A:  “Is there anything or anyone specific you’re referring to?”

E: “It is what I have experienced, sadly.”

I told Emma how sorry I was.  We talked about this more and then I said, “I think your words really do affect many people who are listening and as a result are changing how they see their child.  Even if only a few people listen, it’s worth repeating, don’t you think?

E:  “Some that change their views, teach others well.”

A:  Yes, I think so too.  Many people have reached out to us on Facebook and on the blog to tell us.  It’s always so wonderful when we hear from them.

E:  “Now we must remain patient and doggedly trudge ahead.”

I told Emma, she was leading the way and I would always follow.

E:  “Together we will eagerly tether our ideas, so having happy thoughts will woo anger.”

Ariane and Em ~ May 2014

Ariane and Emma ~ May 2014

Transformations

I began this blog in April, 2010 as a document of what I thought would surely be our finding a cure for my daughter’s autistic neurology.  At the time I did not question that this was a worthy goal and one I should be pursuing.  At the time, all I could see were the things challenging her, making her life more difficult with no upside.  She was, I thought, the victim of a neurology that caused her nothing but pain and suffering.  It was not until I was confronted with the joys, things that I had witnessed right from the beginning of her life, but, after receiving her diagnosis then ignored and dismissed, that I began to appreciate the more complex truth about autism and what that might mean to her.  I could not have imagined that four years later my daughter would be posting her profound insights about life, her neurology and the impact society has on her, not because we found a cure, but because we didn’t.

For those of you who have read this blog from the beginning, or poked around and read a post or two from those early days or those who’ve looked through the archives of the pieces published on Huffington Post, you will see a transformation.  It is not a transformation of my daughter’s neurology as was once my goal, but a transformation of our thinking, and as a result the impact our thinking has had, not just on her self-esteem, but on our ideas about ourselves, individually and as a family.  We had to examine and question our own neurology and the challenges we face as a result, before we were able to fully appreciate hers.

We do not take credit for who she is becoming.  We cannot.  My daughter is strong, stronger and wiser than I have any right to claim influence on.  While it has certainly helped that we no longer fight against her neurology, but instead encourage, support and provide her with the help she needs to flourish, it would be wrong to suggest who she is and is becoming is all due to us.  Had we not found people who believed completely in her, people who saw beneath the words she spoke, the way her body moved, had they not shown us and encouraged us to question our beliefs and set them aside, to look beyond what we thought we were seeing and what that meant, we would still be lost in the horror of what we once thought and were told “autism” meant.

This concept, that of helping an Autistic child flourish to be all they autistically can be, is counter to all that we non autistics are told and urged to believe.  So much of the focus is on making our Autistic children behave and appear less autistic-like.  Appearing non autistic is the emphasis and the fact that this comes at a price, is not often spoken of or even considered among the non autistic population.  Many people see Autistic people, witness their inability to say what they feel and think, and believe there is nothing more to see.  They come to conclusions, having witnessed the person’s movement, their facial expressions or lack of, and believe what they see and what they then conclude is the “truth”.  Assumptions can create all kinds of misunderstandings that hurt a population who do not follow the unspoken rules of a majority.

(Trigger for abuse contained in links)  Misunderstandings that then lead to abuse.  Beliefs, like this and this are expressed and taken by many as fact, regardless of how misinformed, regardless of how shoddy the reporting, which further harm people and children, like my daughter.  The cure I seek now is for our society.  A cure for intolerance, sameness at any cost, and for those who seek to silence those who cannot speak with spoken language, but who have a great deal to say through the words they write, is what I dream of.

One of the many down sides of non autistic neurology is how we struggle mightily to blend in, to fit in at all and any cost.   We strive to be better than, to keep up appearances, to cover our awful feelings of insecurity and discomfort with pretense and by controlling those around us.  Some become obsessed with money and power and yet once they have both, they use it to further separate themselves.  Where and what is the cure for that?

This is the journey I now find myself on.  There are others farther ahead, I am doing my best to follow.  There are many who learned all of this sooner than I did.  There are some who will read this and because they have been on this road longer, will see how far I still have to go, but this is a trek, the best sort of trek, filled with discovery and beauty.  Emma is leading the way now.  I really am just trying my best to keep up, while remaining open to all that I still do not know, but am eager to learn.

 

Emma’s Take on “The Tyger”

The other day Emma chose to read and discuss William Blake’s poem “The Tyger” for one of our two sessions.  A brief aside:  When I was in graduate school, one of my favorite classes  was on Virginia Woolf’s A Room of One’s Own.  As I remember it, we spent a week discussing a single paragraph.  To me, this was bliss.  Are you familiar with Virginia Woolf?  A goddess of women writers.  A writer of imperfect perfection, truth, honesty, despair, joy and suffering, that tumultuous roiling, spilling of words on the page evoking sadness, confusion and ecstasy all at the same time, this was what I felt as I read Virginia Woolf for the first time.

But the other day, instead of pulling out my old copy of Virginia Woolf’s A Room of One’s Own, I thought of poetry and grappled with which poet and which poem?  Should we read Yeats, Wordsworth, Baudelaire or Keats?  But then, for some reason I decided on William Blake’s The Tyger:

“Tyger Tyger, burning bright,
In the forest of the night;
What immortal hand or eye,
Could frame thy fearful symmetry?”

After we’d read the entire poem to its end I asked Emma what she thought.  Emma wrote, “Beautiful illustration of torn ideas.  Rabid wondering regarding innocence and the result of omnipotence.”

Wow.

Seriously.

Wow.

This was her response after reading it through one time.  No discussion.  Nothing from me about meaning or interpretation.  Nothing.  This was Emma’s take away, having been given nothing else.

I then asked her what role if any evil played in the poem.  Emma wrote, “I am thinking evil is understood as being the tiger.”

“I agree,” I said, “What do you think about using the tiger to describe evil?”

Emma wrote, “The worst evil is the kind that is camouflaged as something else…  like an innocent lamb.”

The second to last stanza is:

“When the stars threw down their spears
And water’d heaven with their tears:
Did he smile his work to see?
Did he who made the Lamb make thee?”

Emma then wrote, “… maybe god understands what it’s like to be misunderstood.”

Emma ~ May 2014

Emma ~ May 2014

“Rethinking Your Beliefs About Autism”

Emma and I are speaking at the upcoming icare4autism conference  here in New York City, July 2nd.  Over the weekend I asked Emma what she thought the topic of our talk should be.  She wrote, “Let’s talk about mind/body disconnect and how that makes people misunderstand someone like me…”

I told her I thought this was an excellent topic particularly as this conference will most likely not have an audience familiar with the idea of there being a mind/body disconnect or if they are, what that actually means.  In fact this is one of those topics I wish I’d known about from the beginning.  It would have been so helpful had someone explained to me, when Emma was diagnosed, what it meant.  Perhaps more than anything it is the body/mind disconnect that caused me to make all kinds of assumptions about my daughter, which I now know were incorrect.  Because she did not look at me or turn her head toward me when I spoke to her, I assumed she wasn’t listening.  Because she said things that I couldn’t understand or were disconnected from my questions, I assumed she didn’t understand the question.  I believed the words she spoke were the words she intended and meant.  It didn’t occur to me that I was wrong.  It didn’t occur to me that she was thinking a great many things, but had no way of communicating all that she knew and thought.

Both Ido Kedar and Naoki Higashida talk about how their bodies do not do as their brain requests.  Tracy Kedar, Ido’s mom, writes in the introduction to Ido’s book, Ido in Autismland, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts.  You want to speak and you know what you want to say, but either you  can’t get words out, or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times.  Imagine your face staying flat and blank when inside you are furious, sad, or wanting to smile in greeting.”  Later Tracy writes, “Since you cannot express your thoughts, only you know that you are intellectually intact.”  And still later Tracy writes, “Imagine being stuck in an educational program, year after year, that is designed for a preschooler who learns slowly.  You are bored, frustrated, angry, misunderstood and more than a little hopeless.”

Emma has written about some of this before, but in the next month will be writing about her experience with the “mind/body disconnect” more.  I will be reading her thoughts and insights at the conference and adding my experience of what I once believed.  Emma will then answer questions from the audience time permitting, by writing on her keyboard.

I asked Emma what she wanted to call our presentation.  She wrote, “Let’s call it – Rethinking Your Beliefs About Autism”

And so we are…

Em strikes a pose

And Then Suddenly Life Changes

Life has, quite suddenly, taken a dramatic turn.  Over the weekend I finally came to the decision that I cannot keep my business AND finish this book I’m writing AND work with Emma AND have the time to study this method of helping her, so that I can help others help her.  This feels like a good decision, the right decision, one I’ve been struggling with since last fall, but finally feel ready to take the actions to make this happen. So this morning as I looked around my studio, wondering how I was going to sort through everything and begin the process of dismantling a business and a working studio, I received a call from Emma’s school.  They are putting on a show next week and there have been some issues that required my presence.  As I’ve been going to her school every Tuesday afternoon in an attempt to teach some of the staff how to support her so she can write with them too, I left a little earlier than usual.

After school we met with the principal who asked Emma what she did for mother’s day, Emma wrote, “Mom helped me talk to my brother.”

“Oh!  What did you talk about,” the principal asked.

“We talked about whether Truman should have dropped the bomb on Hiroshima and Nagasaki,” Emma wrote.  Then she stood up and ran across the room, whipping her arms around like windmills before settling back in her chair.

It was decided that Emma needs to be in a classroom where she is being taught the same curriculum as her same age non autistic peers.  Except that she is not yet able to write with anyone at her school the way she can with me, so I volunteered to come in until someone can be trained.  It makes perfect sense.  But as Emma and I left her school yesterday, I thought to myself – what did I just agree to? It was one of those moments when the full weight of what you’ve committed to hits you and you think – am I going to be able to do this?  Really?  Can I do this?

Well, I guess we’ll see.  And for the next ten days I will get an interesting view into how her school does things.  And here’s the other thing…   There is nothing I could do that comes even close to being as important as finding a way for my daughter to communicate in a way that gives her greater access to this “awkward world” as she wrote the other day.  No book I might write, no piece of jewelry I might design, nothing comes close.

My life is suddenly no longer what it was.  I am nervous about going to her school with her and essentially being her one on one aide, but I am also really curious to see how it goes and I’m excited to see her in a class where, I’m hoping, she will be challenged.

Before we left school yesterday, the principal asked Emma whether she preferred being referred to as a young lady with autism or an Autistic young lady, Emma wrote, “I am an Autistic girl and proud of it.”

The principal smiled and asked, “Why do you prefer being called Autistic?”

“Because autism is part of me and can’t be removed,” Emma wrote.

“That makes sense,” her principal said.

I told the principal and assistant principal how fortunate we are that I have a number of friends who are Autistic, one of whom is like a sister to me.  And then Emma wrote, “They are my Autistic family.”

How lucky are we?

The journey continues…

Emma and Me

Emma and Me

The Value of Words

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

Silence

 

Asking Emma

Imagine for a moment if you had an idea.  It was an idea that was in keeping with a conversation taking place by others in the same room as you, but when you opened your mouth to share your thought, instead of using words that would convey what you were thinking you said something that sounded like, “Peacock!”  Not only did you say “Peacock!” but your voice was loud, some would suggest you were shouting, even though you hadn’t meant to shout, even though you weren’t thinking of a peacock, that was the sound that came from your mouth.

Now imagine that, in addition to this, you smiled and maybe laughed too.  Maybe you laughed because as you said what sounded like “peacock” you were also hit with a memory of a time that was funny, or maybe saying those two syllables made you happy, maybe the act of saying them made you laugh, or maybe you laughed, but nothing struck you as funny, the laughter was merely a response to anxiety or maybe it wasn’t any of these things.  Maybe the laughter just escaped from your mouth, unbidden.

Whatever the “truth”is about why the person suddenly shouts what sounds like “peacock!” and then laughs, while others are having a conversation about global warming or are discussing their concerns with a project they’re working on or are talking to each other about what to have for dinner, they are unlikely to assume the peacock shouter is listening to their conversation, much less that they have anything relevant to add.  In fact, the people having the conversation may regard this outburst as an intrusion, or an unwelcome distraction.  Or maybe they don’t, instead they stop their conversation and smile, or laugh and say something like, “is that funny?”  “Are you thinking of something funny?” or “Oh!  Do you like peacocks?” and when all of this is met with silence or some other utterance unrelated to both peacocks and the conversation they were having, they continue  with what they were saying to the other person.

Richard is good about saying to me, “we should ask Emma” or “Emma, what do you think?” or “Let’s find out if Emma has anything to add” or just turning to Emma and saying, “Hey Em, we’re talking about _____.”  Including Emma in our conversations is not something we regularly did.  It’s not that we never did, it just wasn’t something we regularly did.  Including Emma in conversations was not something we once considered doing, not because we didn’t want to, but because it didn’t occur to us that she was listening and understanding, much less had something she might like to add.  This is where her being able to write her thoughts has changed everything.

Once we began presuming her competent we began including her, but as she didn’t have a way to express herself, the – “do you have something you want to add? or so what do you think?” questions were not asked of her.  But once she began writing, all bets were off.  Suddenly and quite dramatically her words propelled me to reconsider even more what I’d once thought.  All of my assumptions, all those misunderstandings, I now view differently.  Now when Emma shouts, “peacock” I do not assume she is interested in talking about the colorful bird.  She may be, but she may not be.  But and this is a big but, I’m able to ask her and she is able to reply.

Emma has written often that the words that come out of her mouth do not always reflect her thoughts.  I used to think that whatever she said out loud, was indicative of what she was capable of and, in addition, was what she intended to say.  My misunderstanding of what was going on for her made for a great many misunderstandings.  Had Emma not found a way to communicate, had she not found a way to write what she knows, thinks and feels, many people would not question that her spoken language is representative of her mind.  They would not be able to believe that she has the complex and brilliantly observant mind that she has.  For most people this is a very difficult concept to fully grasp.  It has taken me daily exposure to such a mind to begin to stop making incorrect assumptions about not just my daughter, but all people I meet who do not speak or whose language is not an accurate reflection of their thoughts.

Emma

Emma

Theories or What Does the Least Damage?

“Of all the therapies and various interventions we tried before you were able to write to us, did any help you?” I asked Emma the other day.

“No,” she wrote and then looked me in the eye and said out loud, as if I might not have understood her, “No.”

I have written about what we would have done differently had we known all that we now know ‘here‘ but still, I have to admit, I was surprised.

“But what about OT?” I asked.

“It is helpful to move,” Emma wrote.

“But did it help?” I asked.

“It’s helpful to move,” she wrote again.

And then I realized.  I was doing that thing that people so often do.  I was asking her a question, she was answering and then, because I couldn’t fully take in her answer or because I was hoping for a different answer, I was asking again.  If this were an interrogation it would be called, “leading the witness.”  Asking questions to elicit a particular response.

“Really?” I said, without thinking.  This time, Emma didn’t even bother to answer, she just looked at the timer and observed out loud, “Six more minutes and study room is allll   doooooone!”

I know for parents new to autism, these words may strike terror.  I remember early on being told about a parent who chose not to do any of the recommended therapies and being horrified.  Wasn’t doing something, even if it wasn’t helpful, better than nothing?  And then I met Henry and Kamila Markram.  They are the two neuroscientists who came up with the Intense World Theory of Autism.  It was Henry who suggested that if you could create a stress free environment for your young child, if you could shield them from surprise, create a calm, safe environment, you would do more for them than any therapy currently available.

Now for those reading this who are thinking I am saying this amounts to doing nothing, I’m not.  But there are those, like Uta Firth and Anna Remington, who insist the Markram’s recommendation, to lessen or adjust the stimuli in autistic children’s environment, is comparable to Romanian orphanages’ and go on to say, “insufficient stimulation and impoverished neuronal input in early development are damaging to children’s social, cognitive and emotional functioning3.” Except this shows a serious  misunderstanding of what the Markram’s are suggesting.  Neglect, mistreatment and being chained to a bed are not what I would call providing a safe, loving, environment free of surprises and lessening of outside stimuli.  

All children crave stimulus, but with the hyper/hypo-sensory issues that confront most if not all autistic children, Dr. Henry Markram suggests sheltering children in a comforting environment that minimizes surprises, sudden unexpected changes of plans, entering new, unfamiliar environments without any preparation, sensory assaults from loud sounds, bright lights, etc. He especially suggests avoiding confrontational behavioral therapies that demand eye contact, verbal responses, compliance and restricting movement.  What makes sense to me?  Following the child’s lead in seeking out craved stimuli. This is an aspect of Floortime that I think is a good approach.

As for other suggestions on “the right way to do it” I’d love to hear more ideas from our autistic readers. What do you think would be truly helpful?

Ideally we would have more scientific studies that show which of these various ideas are correct and that parents should do x, y and z while knowing that they were doing the right thing, the best thing, for their child, but we aren’t there yet.  So until we do know, without a doubt, one way or the other I am going to continue to look to Autistic people and my daughter to guide me.

Riding on the carousel - 2010

Riding on the carousel – 2010

 

 

Differences

“I want to write about being an Autistic girl.  Sometimes difference isn’t easy.  Easiest is to be like everyone else.  Trying to fit in when you act and talk like me only makes everyone more aware of how I am not the same.  Blending in isn’t an option for me.  I stand out anyway. ~  Emma Zurcher-Long

Emma’s words, written last night, reminded me of the TED talk Sir Ken Robinson gave eight years ago, in 2006.  A talk that more than 26 MILLION people have watched on the TED channel, more than 6 million on Youtube

“…If you’re not prepared to be wrong, you’ll never come up with anything original.” ~  Sir Ken Robinson

He also said later in this same talk,  “…the consequence is that many highly talented, brilliant, creative people think they’re not, because the thing they were good at at school wasn’t valued, or was actually stigmatized. And I think we can’t afford to go on that way.”

He wasn’t referring to children with a different neurology.  He was referring to the NON autistic population!  Now think about his words in relation to those with a different neurology…  “wasn’t valued, or was actually stigmatized.”  THIS, this is something I think about all the time.  What if… what if we lived in a society that actually valued Autistic neurology?

We need to radically rethink our view of intelligence,” Sir Ken Robinson said.  He also said, “…creativity — which I define as the process of having original ideas that have value — more often than not comes about through the interaction of different disciplinary ways of seeing things.”  An Autistic brain is all about seeing things differently from the majority of the population.  Why are we trying to temper this?  Why do we spend so much time, energy, effort and money on trying to make Autistic people like their NON autistic peers?  Doesn’t this seem like a massive waste of time?  It does to me.  And this isn’t even taking into account the trauma we are inflicting on a group of people who canNOT be like their non autistic peers even if they were motivated to be.  

Sir Ken Robinson goes on to tell a story about a girl who is failing in school.  Her teachers are complaining, she can’t stop fidgeting, she’s doing poorly in all subjects and the mother takes her to a specialist who after listening to all the things the girl is doing wrong, tells the girl he has to speak with her mother privately and together they leave the room, but not before he turns on the radio.  “And when they got out the room, he said to her mother, “Just stand and watch her.” And the minute they left the room, she was on her feet, moving to the music. And they watched for a few minutes and he turned to her mother and said, “Mrs. Lynne, Gillian isn’t sick; she’s a dancer. Take her to a dance school.”

That girl, Gillian went on to graduate from the Royal Ballet School “and founded her own company — the Gillian Lynne Dance Company — met Andrew Lloyd Weber. She’s been responsible for some of the most successful musical theater productions in history.”

I’m not saying all of our kids will become famous dancers, heading up their own companies, but what I AM saying is that it’s time to rethink how we think about autism and our Autistic children who will one day grow up to be Autistic adults.  We can crush them with the insistence they conform, despite all evidence suggesting they cannot or we can encourage them to flourish.  We can insist they communicate like their non autistic peers and subject them to endless hours of therapies created to train them in how to be indistinguishable from their peers.  OR we can find other ways, creative ways to help them be all they can be.

Sir Ken Robinson ends his talk, which I hope you’ll watch if you haven’t already, by talking about the gift of human imagination and using it wisely.  He says, “the only way we’ll do it is by seeing our creative capacities for the richness they are and seeing our children for the hope that they are.”

“Seeing our children for the hope that they are.”

This, it seems to me, is at the crux of everything.  Every single child born, no matter how different they may be from the majority of people, must be approached with this in mind.

“Blending in isn’t an option for me.  I stand out anyway.” ~  Emma Zurcher-Long

Contemplation

Contemplation