Tag Archives: Autism

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

A Stim or “Self-Care”

I asked Emma if I could write a post about her string and she has agreed.  Yesterday she told Soma about her string.  Emma wrote by pointing to letters on a letter board.

“It is sometimes like a pet, but I don’t have to walk it every day. It does not bother me with noise. It helps me think and I can have secret names for it…”

When Emma was around two she had a mermaid finger puppet that she would hold in one hand and run up and down the hallway leading to our front door.  The mermaid had long black hair and she’d watch its hair sway as she ran.  Later, Emma began twirling a strand of her own hair.  She would twirl it around, but then began putting it in her mouth.  The strand would get tangled and knotted and no matter what we did, that strand of hair would escape our attempts to keep it contained.  We were advised to always put her hair in a pony tail, or braid it, which we diligently did, but despite our best efforts, the strand would come loose, wrapped around a sticky finger, wound and unwound; no brush or comb could tame it.

Then, one day at a birthday party Emma caught hold of a balloon string, the kind that one uses for wrapping presents with.  It was yellow and the balloon had long since popped and been cut away.  I kept thinking she wanted the balloon and asked the parent hosting the party if I could take another balloon as Emma’s had popped.  But Emma wasn’t interested in the balloon.  It was the string she wanted.  I was so fixated on the balloon it took several balloons before it dawned on me that the balloon was merely an annoyance and removing it from the beloved string was necessary.

That yellow balloon string was joined by another balloon string, this time blue.  Emma would intertwine the two, twist them together and twirl them.  This then evolved to packing tape, which Emma would strip down to narrower pieces and then gather a dozen or so up and twirl them about.  A few years ago, she began adding brightly colored duct tape to a few of the pieces, thereby binding them together and it became a kind of work of art, constantly changing, growing, evolving.

Now, the packing strips count to over a dozen, some are several feet long, others are shorter, some even less than six inches, but each string is part of a larger whole and when one goes missing, the upset it causes can be terrible.  Still, we have come to understand how important the string is.  When Emma is writing she wraps it around the other hand, or will place it in her lap, or sometimes will even set it down on the table next to her left hand.  But it is always close by.  We have come to see that this is Emma’s version of a stim, or as Emma has described it, “self-care”.

Yesterday Emma wrote about her string with Soma and I once again marveled at her creative and inventive mind.  I have come to see it as a thing of beauty, ever-changing, a metamorphic reminder of life, attachment, movement, and the never-ending dance we are engaged in with ourselves and each other.

A collection of balloon strings

A collection of balloon strings

The string with masking tape.  A precursor to the colorful duck tape that would follow.

The string with masking tape. A precursor to the colorful duct tape that would follow.

The "string" with duck tape

The “string” with duct tape

Soma and Emma

Soma and Emma

Body/Mind Disconnect & Soma

Many people are baffled when they meet Emma and hear her speak.  Their confusion increases when they read things she has written, like ‘this‘, ‘this‘ and ‘this‘.  How is this possible?  How is it that someone like my daughter can speak, but not accurately answer the question, “how old are you?”  Yet, hand her a laminated number board and she has no problem pointing to the number one, followed by the number two.  Give Emma a laptop computer and she will be able to type in the password, as well as type the name of an artist to find her favorite youtube videos, but ask her what she thinks about the Emily Dickinson poem #656 that begins with “I started Early – Took my Dog – And visited the Sea” and she will say nothing in response.  Yet, when I hold her qwerty keyboard that’s connected to her iPad, she immediately wrote, “You taste the ocean, but feel man’s pursuit.”

Emma wrote, “I can tell my totally impish body – Can you please sit still – and then it will do something different.”  Is this similar to the thoughts and ideas that she is able to write, but cannot speak?

In Soma Mukhopadhyay‘s newest book, Developing Motor Skills for Autism using Rapid Prompting Method she writes, “Autism is not just difficulty in verbal interaction; it is also difficulty in tactile as well as kinesthetic interaction…”  “Because of that, an Autistic person may not be able to adapt to new clothes, eat new food, or learn new movements, even though he may have perfect understanding about them.”  My copy arrived the day before Emma and I got on the airplane to come back out to Texas for another of Soma’s four-day camps.  I’ve been reading it whenever I have time, and highly recommend it.

One of the things Emma loves doing while out here is to have a skill building session with the lovely Rebecca Cooper every day after her last session with Soma.  Rebecca uses the techniques Soma describes in her new book.  So, for example, yesterday Rebecca showed Emma how to draw with a colored pencil several boxes, one dark, one light, demonstrating the difference in pressure to obtain such variations and then went on to discuss how light causes shadows.  They then drew a picture of a tree with the sun shining to its left, casting a shadow on the ground and along the right side of the tree’s trunk and branches.

As Soma writes, “The idea of writing this book came from a necessity.  Working with my own son Tito, I realized how his mind and body were disconnected.  As a parent I had two choices – support his physical needs throughout his life or try to do something about it so that his hands that flapped to stimulate kinesthetically also knew how to soap himself in the shower, clean himself, make his bed, fold his own sheets, and assist his thoughts to handwrite independently.”

Rebecca and Emma Discuss Lighting and Shadows

Rebecca and Emma Doing Skill building Exercises

 

 

“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

Education

Yesterday I wrote a post, Your Child’s Been Diagnosed.  Now What?  There are so many things to add.  But something I wondered often during those early years was  – what good is a diagnosis if the “interventions” the professionals suggest and say will help, do not?  Now this is not everyone’s story, but it is ours.  All the recommended “interventions” did little, if anything, to actually help her.  In fact, I would argue that some of the interventions we agreed to, actually harmed her self-esteem.  And the general rhetoric, disguised as factual information, surrounding autism, encouraged her to feel damaged and at fault for the suffering of others.  No child should feel they are the cause of other’s pain and suffering.  And yet, so many do.

Once we began looking for schools that might be a good fit, we were even more horrified.  The choices were not – which one is best? – but became – which one will not harm her?  This shouldn’t be a parent’s guiding question when looking at schools, but for us, it was.  Will the staff be kind to her?  Will they be patient?  Questions like – will she learn?  Will she be taught science, math, english, social studies?  Those questions quickly gave way to – will she be harmed?  Are cameras monitoring what goes on in the classrooms and hallways?   Do they use isolation rooms?  Do they allow teachers to use restraints?  The best case scenario became less about education and more about physical safety and finding a place that did not harm or try to force compliance.

Academics were stripped down as it was “shown” that she could not understand basic concepts.  Because she could not read aloud, she was given picture books.  Because she could not answer the questions asked, the questions were simplified and simplified more and more and more until it was concluded she didn’t understand.  Because it was determined she could not understand a simple story about a boy and his dog going on a trip to visit his Grandmother, she was given less “complex” stories.  She was given “sight” words that were repeated for months and months, even years.  Billy Goat’s Gruff became the center piece for a curriculum that continued for three years, despite our disbelief and protests.  “Oh but we examine all the various characters in the story,” we were assured.  “THREE YEARS??” we responded.  “For three years?”  “Yes,” we were told with pitying looks and the hubris and bravado I’ve come to recognize from those who are convinced they “know” and understand “autism” and therefore my daughter.

Some of the worst offenders are those who have dedicated their lives to autism.  Those who are so sure they know, and as a result are no longer curious or interested in learning more.  Those are the people who are asked to give presentations at Autism Conferences, they are the ones who write books, that parents, not knowing any better, buy.  They are the ones we listen to and slowly as their voices are the loudest and most plentiful, we begin to doubt our instincts, we begin to soften our protests, we begin, slowly, slowly over time, to believe them.  Our ideas about our child are whittled away.  Our instincts are pushed aside to allow for those who know better, who have been doing this for “twenty years,” who have worked with “this population” and who, from having spent decades among children just like mine, know things I cannot possibly grasp or understand.  (This, by no means, describes everyone, but it does accurately describe a great many, and sadly, often those who were in a position with the most power.)

We parents are told to see our children for what they are: Intellectually impaired, socially inept, incapable, lacking and unable to understand the most basic concepts.  My child, as a result was shuttled off to learn how to tie her shoe laces and wash her face and hands.  While life skills are certainly important they should not take the place of academics.  So many of us are consoled with the idea that at least our child will be able to dress themselves, or not…  in which case we envy those parents who have children who can.  Our focus turns from philosophy, an exchange of ideas, history, english, poetry, literature, science, social studies, math and geography, to making sure our child can brush their teeth.  Until one is accomplished, it is thought, the other cannot be introduced.  A child who cannot dress themselves, surely cannot be introduced to Kant or Socrates or a poem by Yeats.

“Hey Emma, I’m curious, how is it that you know about WWII and Nazi Germany?”

“I hear you, Nic, and Daddy discussing,” Emma wrote over the weekend.

“Do you think it was right for Harry Truman to drop the bomb on Hiroshima?” my son asked.

“I have to learn more to say one way or the other,” Emma responded.

“Do you want to hear some arguments for and against the bombing of Nagasaki and Hiroshima?” N. asked.

“Yes, I can better understand using the bomb if you tell me more,” Emma wrote.

There is so much more to say…

Emma struck this pose while waiting for the school bus - May, 2014

Emma struck this pose while waiting for the school bus – May, 2014

Your Child’s Been Diagnosed. Now What?

I always think I’ve written something already about any given topic only to realize there is more to add.  So it was the other day when asked about advice for a parent whose child was just diagnosed with autism.  This is a question that comes up often and always when asked I hesitate and here’s why.  For every child that might respond to various “interventions” the way my daughter did, there will be countless others who will not.  The therapy may be worse or better.  The child may have different sensory issues, they may be voracious readers, hyperlexic or they may not be able to see the printed word because of visual issues, the letters may swim on the page until a different background is found or some other tweak is done, which allows everything to stay still.

There may be auditory issues that my daughter does not share, tactile, physical issues and the list goes on.  So what to do?  How does a parent wade through all the opinions?  How do you find a way to quell your fear, respect your child, ignore that list of all that’s wrong and find the things that will help your child flourish?

For me it boils down to two essentials.  The first is to presume my child competent.  I’ve written about this concept a great deal, but here are a few posts which talk about what that means – ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  Presuming competence is very much a work in progress.  What I once presumed as “competent” my daughter has shown me didn’t go nearly far enough.  We do the best we can with the information we have.  But anything intended to “help” my daughter, anyone who is going to be spending time with her, must understand the concept and be committed to putting it into action.  This includes, speaking to her and not about her in her presence.  It means, even if the child shows no sign of understanding, even if the child has no spoken language and has never written a single word, we assume they can understand more than their bodies and gestures and utterances indicate.

Presuming competence has evolved for me and is helped by keeping my fear, judgment and assumptions checked at the door.  I cannot presume my daughter capable if I am simultaneously engaged in a running list of all she’s doing wrong.  I cannot practice a presumption of competence if every interaction I have with her is really an ongoing test where I’m insisting she prove herself to me.  Presuming competence is a life long practice and it is has far-reaching implications for not just my daughter, but all human beings I come into contact with.

Presuming competence is key, without doing this, everything else I do, no matter how great my intentions, will fall flat.  I have to believe in my kid.  It means that I speak to my child the same way I would speak to any child their age.  It means I approach my child believing in their ability to learn.  It means I believe they can and will learn.  It means they will communicate, I just have to find the best way to support them so that they can and it may not be with spoken language.  It means any therapy, no matter how popular, must be based in presuming my child competent, respecting my child’s process and treating them with the same respect I would insist on for anyone coming into contact with my non autistic child.  It means I have to do the inner work regarding what I believe, notions of should and shouldn’t, entitlement, prejudices, and whatever ideas I may have about my child and who they should be.  It means I approach my child with love, consideration, respect and curiosity.

I have come to believe that services, those services that everyone talks about and that are centered on our children, should include services for parents.  Early intervention for parents is crucial and much needed.  We parents are often in greater need of help and support than our children.  Good quality respite care, therapy for us, the parents, designed to help us cope and sort through our messy emotions so that we are in a better position to be there for our children.  I needed support from parents who’ve traveled the path I now found myself on.  No parent should ever feel the kind of fear I once felt.  Which means we have to change the current conversation surrounding autism if we are going to help our children.  No one is helped by having their every flaw (which is completely subjective, by the way,) scrutinized, both publicly and privately.  There are ways to get support and the help we and our kids need without demonizing our children and talking about them in ways we would never allow people to speak about our non autistic children.

Which brings me to the second essential thing – Autistic people.  It is imperative that all parents be given a list of blogs written by Autistic people who are describing their experience of the world.  This has to be essential reading while we figure out a way to put into place advisory programs made up of Autistic adults who are able to help parents understand their children.  These must be paid positions just as all other people involved with early intervention are paid.

We need mentorship programs of Autistic people mentoring our kids AND mentorship programs where our Autistic kids are mentoring younger Autistic and non Autistic kids.  One of the most valuable relationships my daughter currently has is with a little boy who shows no signs of being Autistic himself.  But they enjoy being together and the boy’s parents encourage their relationship. An inclusive society is key as we move forward.

On the Resources page of this blog I’ve put together a fairly extensive list, beginning with non-speaking Autistic people’s blogs.  I am always adding to this list.  I encourage all parents to start clicking on those blogs, find the ones that resonate and speak to you and follow them.  Start commenting on them, reach out to others who share your child’s neurology, develop relationships.  Listen and learn.  You will learn more from doing this than anything I learned in the half-dozen years I spent listening and reading non autistic people’s opinions.

And finally this is a short list of what I consider essential reading/viewing for anyone who has an Autistic child.

Wretches and Jabberers
Ido in Autismland
Intense World Theory of Autism

Emma and Teddy

Emma and Teddy

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Mark Utter and Ibby at the ICI Conference - July, 2013

Emma, Mark Utter and Ibby at the ICI Conference – July, 2013

Emma and Laura

Emma and Laura

Emma and Ibby

Emma and Ibby

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

Emma and Henry

Emma and Henry

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

Autism and Eugenics

As shocked as I was that Emma brought up the topic of eugenics, it also seemed completely “expected” in the sense that Emma has frequently written about similar issues regarding parenting and autism. In many of her previous writings on the subject, Emma has sought to ease the fears of parents after their children are diagnosed with autism. With this conversation, it becomes more clear as to why she feels so highly motivated to show parents that an autistic mind is a wonderful mind and the prospect of having an autistic child could just as easily be looked upon as a “blessing” rather than a “curse.”

It is literally a matter of life and death.

I have no doubt whatsoever that tests will be created that can determine (with at least a reasonable amount of certainty) whether an embryo will develop autistic (or autistic-like) neurology. Having just returned from a weeklong conference on neurology and consciousness studies, where I listened to over 100 lectures by the top scientists in the field, I also have no doubt whatsoever that such a test will likely be developed within the next five years. The technological advances in this area are occurring at such an exponentially swift rate that it would be ten times more shocking if the “autism test” were NOT developed.

I have equal certainty that once a test like this is developed (particularly if it is a non-invasive blood test, which is also highly likely) that the results will be horrifyingly similar to what has occurred when fetuses test positive for Down Syndrome (DS) — a 90% abortion rate.

If you’ve ever spent a decent amount of time with a person with Down Syndrome, and you’re a reasonably intelligent, kind and compassionate person, you fully understand what a horrific disaster this is. When the “autism-test” becomes available–and it will–an equal disaster will likely occur, if we don’t effectively get the word out that autism is not to be feared, but should instead be embraced.

Here is a good article I just found on the topic and points the way to a more organized manner to produce and publicize an awareness campaign to counter the eugenics tragedy, in the absence of a more positive attitude toward autism and autistic people.

Very unfortunately, we live in an increasingly perfectionist society, particularly in America. Any American woman knows how difficult life became for her as a little girl, once she became aware of what society deemed: “the ideal woman.” Now little boys have to push the same boulder up the same hill, trying to get a stud-muffin six-pack hot-bod. Just look at the cover of any magazine that features any human being that is not part of a straight-news story.

It’s hard to be optimistic about the outcome regarding eugenics. People, being people, want the “best for their children.” And the “best” that’s being shoved down people’s throats is an impossible ideal. So wanting the “best for their children” often translates into wanting the “best children.” Depending on your cultural affiliation, the “best children” might mean tall, slim, blond hair and blue eyes. Or it might be highly intelligent, hard-working, caring, athletic, wealthy, powerful, dominant, sexy, persuasive, cunning or ruthless.

Perhaps all those traits will become “genetically selectable.” Will parents do it? Absolutely. How many? Lots. Will laws be imposed to stop them? Perhaps. Will those laws be broken? Absolutely. The big questions aren’t: “if” or “should you?” They are: “when” and “how much?” And with Autism Speaks sucking up 80% of the public discourse bandwidth, the generally accepted definition of “best children” continues to be: “children who are not-autistic.”

It’s hard to be optimistic about anything anymore. Like whether your children will ever see a living coral reef. But if you care, you have to try, and we really have to try very hard, and very quickly if there is any chance at all of turning the tide.

Emma’s Hope Book began as a search for “hope” in “helping” Emma to be a less-autistic person. It’s shameful for me to write that, but it’s the truth. Thanks to Ariane’s tireless quest to learn more about autism, she discovered the blogs of autistic people and suddenly our perspective shifted completely. Now Emma’s Hope Book is about hope with a capital H, not in air-quotes. It’s about the Hope of understanding and acceptance and respect and basic human rights. It’s about the Hope of reaching parents with children who are newly diagnosed with the “disease” or “disorder” of autism and suggesting an alternative perspective, so they may embrace and treasure the gift they’ve been given–and prevent the countless trauma-inflicting mistakes we made while we listened to the “Cure Autism Now!’ crew. It’s about the Hope of reaching the parents of autistic children who have already made many of the mistakes we’ve made and show them the power and beauty and wonder and joy of true acceptance–of learning that it is never too late to change–of learning that every day and every moment of every day counts.

Most importantly, Emma’s Hope Book is about the Hope of changing the world one person at a time through the kindness, compassion, joy, creativity, intelligence, insight and wisdom of Emma and all the autistic people like her (and unlike her) who share their thoughts, feelings, fears and hope with anyone who is willing to open their minds and listen:

“Know our understanding of what’s ideal constantly changes. Ideally one understands: to want a child is a desire without promise for sameness.” — Emma Zurcher-Long

Image

Autism Graphics

In the last two days I have been sent two different graphics supposedly about autism, but that upon reading take my breath away because of their blatant inaccuracies and biases.   The last one was in the shape of a pyramid in a shade of blue I’ve come to despise with the heading, “Impairment in Imagination” and I just wanted to cry.  Impairment in imagination?

You have no idea how much I wanted to hit the delete button and scream or bite someone, which always reminds me of a scene in the British comedy, Shawn of the Dead where the main character’s mom is bitten by a zombie, but she doesn’t say anything until her son asks, “Mom, are you okay?  Did he get you?”  And the mother smiles weakly, as blood gushes from her arm and replies, “Well, he was a bit bitey.”  Hilarious.  Only what I was feeling when I read “Impairment of imagination” was not hilarious.  No.  Not at all.

Underneath that unfortunate heading was written, “Deficits in flexible thinking regarding interests, routines, perspectives and rules.”  Two key words are used in these first two sentences “Impairment” in the heading and “deficit” in the second.  The first is just incorrect and the second is a stereotype that while it may be true for some people it certainly cannot be stated as fact for ALL people.  I purposely did not say “Autistic” people because rigidity and a reluctance to see another’s point of view are things many human beings have trouble with and this is not something that can be pinned on one specific neurology.

Below this, the graphic reads, “does not understand other people’s points of view or feelings.”  Again I could list a number of non autistic people in the news who would certainly be terrific examples of this sentence.  To suggest that this is a defining characteristic of Autism is inaccurate and plays into the whole “lacking empathy myth” that so many believe as fact about Autistic people.  Please read Drs Kamila and Henry Markram’s Intense World Theory of Autism for another thought regarding autism.  And by the way, the Markram’s, both of whom are neuroscientists, call it a “theory” because they understand that it is not scientifically proven fact, but a theory they developed and continue to tweak as they learn more.  They are highly regarded, acclaimed, well published and the two people working in the field of autism whose work I believe will eventually change how autism is viewed.

The next line of text on the graphic reads, “Agitated by changes in routine.”  This line would actually be fine if it weren’t for all that precedes it.  But I would also suggest that this line could be said about all young children.  And in the end this is my criticism of the information that is being given to people about autism.  Autism as defined by a list of deficits that added up does little other than to create panic in parents of Autistic children.  I’ve written about this before ‘here‘, ‘here‘ and ‘here.’   These posts are just a few examples of things I’ve written describing what fear did to me and why terror does not motivate people to make good decisions or help them decide how they can best support and encourage their children to be all they can be.

This particular graphic goes on with headings of:  “Impairment in Social Relationships,” “Impairment in Social Communication” and at the base of the pyramid the heading says:  “Additional Difficulties” where they list, among other things, “Appears to enjoy being held/restrained…”  NO!  This is absolutely wrong.  You cannot write that someone “appears” to “enjoy” “being restrained” thereby justifying sadistic behavior done by staff/therapists/parents/ANYONE.  And again, I  want to SCREAM!  Who is writing something like this?  This is a graphic that is being used by a school for Autistic children.  It is a graphic that is stating things as though proven fact.  A graphic that parents, children, educators are seeing.

We have to ask ourselves – WHAT ARE WE DOING?  How is it okay to publish such statements as though they are fact about a neurology that the best neuroscientists in the world are baffled by?

Please.  If you are confronted with a graphic that is anything like what I’ve just described, do NOT share it.  Do NOT believe that these things are a fact, just because they are written as though they are.  Do not add to the misinformation by repeating it.  DO NOT.  It is statements like this, one page info graphics written by non autistic people, who are not neuroscientists, who seem to know very little about autism that cause tremendous damage to the Autistic population.

We must all become critical thinkers when it comes to information about autism. We know very little about the human brain.  The best and smartest neuroscientists in the world are working hard to gain a better understanding. Most of what we are being told are theories, please let’s not treat these as fact.

Emma ~ 2010

Emma ~ 2010

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Unstrange Mind – Schools Supporting the Idea that…

And the Winners Are…

Emma randomly chooses the winners...

Emma randomly chooses the winners…

This morning  I placed all the names of those who commented on yesterday’s post into a bowl and Emma randomly chose five names to win Barb Rentenbach and Lois Prislovsky’s hard cover book, I Might Be You

Be prepared to be blown away.  This book is absolutely wonderful.

To all the winners – Julie L., Edie, Kathy Quoyerser, Corinne Joly and Jill – I will be contacting you by email. Your book will be sent via United States Postal Service after I’ve received your address.

And for those who want to read it, but didn’t win, please consider purchasing this terrific book either as a hard cover or as an ebook available for all eReaders, or the audiobook, which I had the honor of recording with Barb and Lois in New York City last year.  I am the “voice of Barb” and documented that amazing experience ‘here‘, ‘here‘, ‘here‘ and ‘here‘.

2

without looking…

And the winners are...

And the winners are…

Emma Presents At CoNGo With Ari Ne’eman

Tuesday night I received a message from Jess of the blog  – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN.  She asked me if I’d be able to step in if she still felt awful Wednesday morning.  I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.

Fade to the following day.

Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans.  So we wait to hear from him and I go about my day, trying as best I can to not think about it.

Three hours before the event I was able to check my email and see that I’d been given the green light.  I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea.  Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?”  An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.

We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn.  After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance.  Emma wrote, “I am aware of many things, and so are you.  Acceptance takes more dedication.”  I paused and then turned to Emma and said, “Do you have anything else you’d like to add?”  I held her stencil board and gave her a pencil.  Emma wrote, saying each letter as it was pointed to, “Yes.  Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”

Applause.

I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded.  And because we thought the whole thing was being recorded we didn’t bother taking any still shots either.  So other than a few photographs of Ari, we got nothing.  (Insert sad emoticon.)

Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t.  And if I’m right then it was worth every second.

PS  Jess, I’m hoping you’re feeling better.

Ari Ne'eman

Ari Ne’eman

 

 

 

Awareness Sucks

Today I wanted to do a companion post to yesterday’s “Emma Discusses – Awareness“, with a post entitled, “Emma Discusses – Acceptance”.  I love when Emma tells me to put something she’s written on the blog, because her words are always so profound and insightful.  But once we returned home Em was too tired, so I resigned myself to writing about Autism Awareness and what that means to me.  After all today is World Autism Awareness Day.

A year ago I wrote a  post – Autism Awareness? where I discussed how my awareness regarding autism has changed over the years.  The next day I wrote  – “What I Wish I’d Been Made Aware of When my Daughter Was Diagnosed With Autism“.  After rereading those posts, I then remembered a couple of others I’d written about autism awareness and acceptance, ‘here,’ ‘here,’ ‘here,’ and ‘here‘.  And after all that I just felt cranky.  Seriously.  Just cranky.

I don’t look forward to April the way I once did.  April is a loaded month when many of my friends feel they must hide or cannot look at social media because they know they’ll be triggered by all the calls to “light it up blue,” the hype from organizations like Autism Speaks who seem to do nothing, but speak… it’s exhausting and in the end the awareness they’re pushing isn’t awareness that helps either me or my daughter.   What they seem to call awareness, is to my mind hyperbole, fear mongering and irresponsible.  I’ll be honest, I would be happy if Autism Speaks folded up their little tents and found something else to rant about.

In addition to Autism Speaks’ dire calls for action, the CDC released new statistics – 1 in 68 – and I just groaned because I know how those numbers will be used, forget that they’re almost completely meaningless and actually not an accurate number as Jim Martin explains in his most recent post, 3 Reasons Why Canadians (and Everyone Else) Should Stop Using the 1 in 68 Autism Stat (For Now).  More fear. More anger.  More calls for action.  More listening to people who don’t know what they’re talking about.  More and more and more and more and I just want to crank up Pharrell Williams’ Happy at full volume, put it on repeat and dance.

So in the midst of all the calls for awareness I’m going to hold my daughter close, revel in her presence, sink into my immeasurable gratitude that I get to be her mom and feel the joy in knowing she is a young woman who is talented, funny, creative, wise, insightful, kind, and more forgiving than anyone I’ve ever met. And, boy, am I proud of her.

How’s that for a little awareness?

Emma ~ 2010

Emma ~ 2010

When Time Stands Still

After publishing yesterday’s post, “So Many Kids Are Just Like Me” I added a video of Emma writing those words and more.  I hadn’t added it when I first wrote the post because Emma hadn’t given me permission yet and we were still trying to get the video uploaded, ran into problems with the picture being condensed and other issues.  In any case, for those who want to view it now, you can.  On a personal note, I’ll just add that this video makes me feel very squirmy because it does not capture the playfulness we usually have together, and I’m hyper aware of the anxiety I was feeling while we were taping…  Also the video does seem to be taking longer than it should to load, at least it is on my computer, but Emma has said she’d like to tape more, so I’m hoping we will get better at uploading as we continue.

My friend Alex commented on yesterday’s post about the impact of watching Emma write, as opposed to reading about it.  It was exactly for this reason that we decided it was important to post the video.  There is nothing like seeing in real-time another person writing this way.   No amount of words, no matter how well phrased can describe this process the way watching it in real-time does.

I will never forget that moment at the Autcom Conference in 2012 when I watched a boy, younger than Emma is now, write such insightful and profoundly wise comments  that his mother then read out loud during a presentation.  It was that moment when I thought to myself – maybe, just maybe my daughter has thoughts like this, and we just have to find a way for her to express them.  It makes me cry with gratitude thinking about that moment not so very long ago.  No one could have convinced me then that just a year and a half later we would be where we now find ourselves.

It is inevitable that there will be people who say things like, “well it takes too long” and  “how can this work in a class room?”  But as a parent who has wanted nothing more than to know what my daughter was thinking, who believed despite what the majority of people believed and were telling us that maybe, just maybe they were wrong, watching Emma write is when time stands still.  The excitement I feel when she begins to point to a letter is like nothing I’ve ever experienced.  Each letter she points to is a tiny gift wrapped in beautiful paper, as the paper peels back to uncover the word inside the world and everything in it stops.  It is a sensation like none other.

To my daughter, who works so very hard to accommodate my need to hear her experience of the world put into words, I thank you.  Every single time you do, even though you feel it’s tedious, I thank you.  Gratitude does not come anywhere near my feelings.  There are no words for this.  And I know this is a tiny glimpse into what you, Emma, feel every time you are asked to put into words your thoughts.  Words can’t come close…  finally I understand…

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

I Used to Believe…

The degree of arrogance displayed by more than a few who claim to be “experts” with decades of hands on experience in the field of autism is absolutely staggering.  Their arrogance is only rivaled by their mindset of assuredness. They are unwavering in their absolute knowing about a neurology that continues to baffle the best neuroscientists in the world.  These practitioners not only speak from a place of “authority” they are imperious, contemptuous and profoundly scornful of any who suggest they might want to consult with a few people who are actually living their lives with the neurology these so-called experts claim to understand and know all about.

We have run into more than a few of these professionals over the years.  These are the people who fill me with fear.  They come into contact with hundreds and thousands of children over their decades of “expertise” and it terrifies me.  They win grants and are paid to speak at conferences.  Their opinions are sought by a great many.  They swagger about with their self importance, wearing their years of working with the Autistic population as though it were a badge of honor.  They think nothing of grouping an entire neurology into a small, convenient box labeled “autism”.

They smirk and posture and plaster their walls with their many credentials and degrees.  They make sure everyone understands exactly how many years they’ve been working in the “field.”  They say things like, “autistic children are…” accuse those they disagree with of “falsehoods” and go on at length about how they know what “autistic children” want, need and care about.  They are profoundly dismissive of those who actually ARE Autistic and who dare question or disagree with them.  Instead of listening to the very people they claim to know so much about, they silence with words of contempt.  They attack.  They strike out, bring in reinforcements of like-minded colleagues.  Sometimes they even target someone, almost always someone who is autistic, and try to do damage to them by contacting their employers, or those they have professional contact with.

I used to be shocked that such people would choose to be in a profession where the people they are supposedly wanting to help, end up being the very people they silence and hurt.  It used to surprise me when I would read comments by people who have no trouble using language either written or spoken to get their point across, dismiss and question someone who does not enjoy the same ease with which they do, to communicate.  I used to be naive enough to believe those calling themselves an “expert,” and had degrees suggesting study and dedication in their given field was further evidence of their title.

I used to believe in a great many things.

*This post is not about any one person, but about the dozens of people I’ve met over the years who fit the above description.  There are many people, both autistic and non autistic, who have dedicated their lives to autism, who (thankfully) do not fit this description.  They are open to new ways of thinking, they are actively listening to those who have different experiences than their own.  All of them are engaged in learning, discovering, uncovering more information and examining what they think.  They are operating from a place of humility, and to those people I am profoundly grateful.

facts
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