Category Archives: Parenting

Asking Emma

Posted on May 8, 2014 by | 22 comments

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

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Posted in Autism, communication, Parenting, presume competence

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Theories or What Does the Least Damage?

Posted on May 7, 2014 by | 68 comments

“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

 

 

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Posted in Autism, communication, Parenting

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“It’s Important That Other Parents Understand.”

Posted on May 5, 2014 by | 47 comments

Written by Emma Zurcher-Long

“I will talk about the upheaval from last night”

“I toyed with downward feelings of rage then

as bountiful memories seeped into my raging mind

I surrendered to purposeful sleep

my screaming mind is momentarily spared from stormy thoughts

piercing my being

threatening no kindness

patience is ground down til pounding terror is all that remains.

Only the dedicated few

talk about love during episodes of furious pain

their love is rejuvenative and restores faith in this awkward world.”

 

From Ariane:

Emma wrote this after having a very rough night over the weekend.  I asked her if it was okay to post her beautiful words here and she agreed.  I asked because there was a time before we had found a way to support Emma’s outpouring of words, before she was able to write, before we were able to understand, before we understood…  those were the times when nights such as the one she is referring to were even more devastating for all of us and our assumptions about what might be going on were so often wrong.  Emma agreed to post this because, “It’s important that other parents understand.”  The problem with the assumptions we made was that they often led us to then behave accordingly, even without meaning to, they affected how we responded to her.

We might have thought – this is a manipulation, she is doing this to us.  We are being held hostage to her screams.  We would mistake her terror for manipulation.  We might withhold our love in anger.  We might assume that to not do so was giving in or condoning the “behavior”.  We might do any number of things to “show” her that this way of being was unacceptable.  Except that this “way of being” was so beyond the scope of our experiences, so beyond what we could make sense of.

“Pounding terror is all that remains.”

And so I remembered afterward the comments from this post, “What Others Had to Say: Love, Overwhelm, Violence” and all the people who so generously opened up their lives and wrote about their experiences with being overwhelmed and no longer able to cope.  That point when feelings completely take over and all we can do is weather the storm.  Emily K. wrote: “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

And Autisticook who wrote:  “It will get better.”

And she also wrote this:  “Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.”

And this:  “You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.”

And this:  “Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me.”

And this:  “I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.”

And THIS.  This is SO important:  “Don’t ask me questions.  If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again.“

And this: “Don’t try to distract me.”

And this:  “Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.”

And finally, this:  “Please give me time to process.”

I would like to report here that I remembered each and every one of these things and that I put them all into action, but I didn’t.  What I did do was try to remain calm and loving.  And when my calm began to fray, I tried to remove myself, while reminding her of my love.  I did a number of things right, and I made a number of mistakes.   We are all learning here.  When calm was restored Emma said she wanted to write about “the upheaval from last night.”  This was in response to my question, “Is there something in particular you want to talk about this morning or would you prefer we discuss an article from the New York Times?

I was surprised she wanted to talk about it.  And then she wrote those beautiful words, which I can only describe as less prose and more poetry, a song, really.  A song borne of experience, despair, and transformed into a thing of beauty.

The beauty of Emma.

Emma ~ 2012

Emma ~ 2012

 

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Posted in Autism, Parenting, Self Injurious Behavior

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Dare to Hope

Posted on May 1, 2014 by | 35 comments

Trigger Warning:  Parental despair

Five years ago I was in a bad, bad place.  Life felt unbearable.  The future loomed ahead shrouded in fear.  I could not imagine a life that was not bleak and filled with pain.  There were times when I could not bear the thought of another day.  There were times when I felt it was all too much.  People would make kind suggestions, but none of their words made sense to me.  I was sinking and saw no light.  I thought it was because of my specific circumstances.  I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her.  I was told she couldn’t comprehend this world.  I was told concepts like less and more, time, currency were beyond her ability to grasp.  I was told she was in her own world.  Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children  had.

I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed…  There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry.  I cried for myself, but I also cried for my child.  I loved my child.  I ached for my child and what seemed to be her inevitable future.  Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being.  I had fantasies of “heading north”.  I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.”  Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing.  There was a part of me that meant it.  I wanted to leave all that pain behind me.

There are those reading this who will cringe at this description.  There are those who will judge me and what I once felt.  There are those who will point out how self involved all of this sounds.  They will say, but how could you not see that what you were feeling was affecting your child?  There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror.  I understand those responses too, because now, I catch myself feeling those feelings too.

My daughter has defied everyone’s expectations, including ours.  She is writing now.

She is writing such incredible words.  Sometimes a sentence may take her five minutes to construct.  I would cheerfully sit for thirty minutes or however long it takes for her to express herself.  Parents hear about my daughter and they say, “Ah, but my child isn’t like that.”  And so I ask, “How do you know?”  Parents say, “I know my kid.  He/she isn’t able to understand.”  I once believed that too.  And so again I ask, “How do you know?”  Parents say, “I know my child better than anyone.”  I once said this as well.  I thought I knew.  I believed what others told me.  She would laugh and then run full force into a cement wall, using her head as a batting ram.  We would get the dreaded phone calls from her school.  All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.”  “She does not know the value of a penny.”   “We will continue to work on sight words.”

Today my daughter is enlightening me.  If you want to know more, read “How We Got Here“.  Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.”  Her school is now trying to learn RPM so that she can write with them too.

I cried when she wrote that.  I cried because I didn’t know until recently.  I cried for all the years when she had no way of telling us.  I cried for all the times I didn’t believe.  I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams.  I cried for every single parent who has ever felt the way I once did.  I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them.  I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.”  I didn’t dare hope that one day my daughter might be writing the things she now writes.  I didn’t dare hope, it hurt too much.

To the parents who feel overwhelmed with fear and despair  – I was once just like you.  Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant.  I’m grateful now that I didn’t find such a group because there’s another way.  I found another way, but not before making many, many more mistakes.  This blog documents a number of the mistakes I’ve made over the years, but not all of them.

If there’s one thing I want to say, it’s please, dare to hope.  Without that we are all lost.

*As always, I asked Emma for her permission to publish this post.

Watch:
Wretches and Jabberers
Mark Utter’s I am in here

Read:
Ido Kedar’s book:  Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.

Emma getting ready to write

Emma getting ready to write

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Posted in Autism, Parenting, presume competence

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Having THE Conversation & Parenting

Posted on April 28, 2014 by | 24 comments

Emma not only gave me permission to write about this, but asked that I “put it on the blog.”  I posted a small portion of this conversation on Emma’s Hope Book Facebook Page yesterday.

Trigger warning:  eugenics, abortion

Yesterday morning I saw an article in National Geographic about the Seine and Paris that I thought Emma might enjoy reading, particularly since her grandfather, my father, was born and raised in Paris.  But as with any topic I choose I asked Emma if it was something she was interested in.

Ever the diplomat, Emma wrote, “I do want to talk about the Seine, just not now.”

“Okay,” I said, “what would you like to talk about instead?”

“I want to have the conversation about eugenics,” Emma wrote.

I was astonished.  After I’d recovered from my astonishment I thought of how I continually talk about presuming competence and yet am so often surprised by my daughter’s words.  I’ve come to the conclusion that one does not preclude the other.  I can presume competence and still be surprised by the things she knows and says.  In fact, if I asked a group of twelve-year olds to talk to me about eugenics, I’m guessing there would be several who would not be familiar with the word, let alone able to spell it correctly.

“What specifically are you wanting to say or know?” I asked.

Emma wrote, “What do you believe is right?”

I said, “I don’t believe eugenics is ever a good idea, because it is a desire to extinguish those believed to be lesser beings.  I think all human beings are valuable and should be treated with respect and equally.”  As I spoke I held the keyboard for her to respond if she wanted to.

Emma wrote, “I believe human life is sacred and people treat those who they think are different far worse than people who are like them.”

“Yes, I think you’re right,” I said.  “Do you worry about eugenics?”

“Yes,” Emma wrote, “because parents seem so upset when they find out their kid is autistic.  I worry that people like me will end up being aborted.”

Eugenics and abortion…  Now two topics I was completely unprepared to talk about.  So we discussed both.  I talked to Emma about prenatal testing and how such a test has not been made yet.  I explained that autism has not been found in one particular gene, but that researchers are finding whole clusters of genes suggesting that it will be very difficult to isolate one or even a group of genes that may or may not be related to autism.  We discussed abortion and how and why it is a complicated topic.  And we talked about the difference between abortion and eugenics and how the two can overlap, but that they are also not necessarily related.

As with any complex issue, this is where parenting can get tricky.  I asked myself, how much information is too much?  I do not want to be overly protective and try to shield either of my children from difficult topics, nor do I want to “feed” my children my opinions.  Instead I want them to have enough information so they can form their own opinions, even if they develop opinions I do not agree with.  I’d rather disagree and talk about that than have them believe something without thinking about it.

I told Emma that her concerns were one of the reasons I feel so compelled to continue writing and why I hope she will also continue to write so that “more people get to know someone like me.”  We discussed how people’s perceptions about autism and how the things we see and are told, all that inaccurate information, can cause people to do things they would not do if they were given a more balanced and informed view.

Emma then wrote, “…I will write about this more so other parents open their hearts and learn…”

Now I realize I am bringing up difficult and complex topics.  Topics many people have strong opinions about.  I’m actually not interested in getting into an ideological argument about abortion and a woman’s right to choose, however I am interested in discussing the ramifications of the current and ongoing conversation regarding autism.

Eugenics was not a topic I would have ever thought to bring up with my daughter.  Not only was it not something I’d thought to discuss, it is a word I did not assume she knew.  But, just as when she wrote to Soma a few months back that she had seen the Grammy’s, unbeknownst to me, my daughter hears everything that is said around her.   Emma wrote that she saw the Grammy’s while waiting in the airport.  I hadn’t even noticed they were being shown because I don’t pay attention to the television screens when we are in an airport, so busy am I with getting through security and finding our gate.

I am so grateful Emma is able to write about these things so that we can discuss her concerns.  How many people who are Autistic worry about being harmed or even killed because of their neurology?  How many are able to voice their concerns?  How many are worrying in silence?

Emma - April 2014

Emma – April 2014

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Posted in Autism, controversy, Parenting

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Autism Graphics

Posted on April 25, 2014 by | 66 comments

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

Related Posts:
Unstrange Mind – Schools Supporting the Idea that…

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Posted in Autism, autism experts, Parenting

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The Power Of Understanding

Posted on April 17, 2014 by | 5 comments

I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.

If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now.  Please feel free to share widely.

As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”.  Both agreed.  What has occurred as a result is nothing short of incredible.  Understandings have been forged, exchanges of ideas and beliefs have been made.  They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer…  Many people take these types of conversations for granted.  But we do not.

Listening and learning…

Nic & Em

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Posted in Autism, Parenting, Siblings

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“Self-Knowledge Avails Us Nothing”

Posted on April 15, 2014 by | 13 comments

There are things I forget to talk about with my daughter.  Things that someone will mention or I’m reminded of in some other context and suddenly I’ll think – Gosh, why haven’t I discussed this with her?  These are things a parent would typically talk to their child about, but that because my daughter cannot easily communicate her thoughts I, without meaning to, do not immediately think to talk about with her.  This is the impact my limiting ideas about language and not being able to communicate through spoken language have on my daughter.  It doesn’t always occur to me to discuss with her a great many things until I am reminded.   Out of respect for my daughter I am keeping this post purposefully vague.

I am moving along here, learning as I go and continue to make a great many mistakes.  I have never deluded myself into believing the – making mistakes – part will end, the most I can hope for is that I won’t continue to make the same mistakes, but even so, I do.  I seem to need to repeat the same lesson many times before I am able to make lasting change.  It is a mistake to believe non Autistic neurology does not have trouble with transitions, generalizing information, learning something taught and immediately changing behavior to demonstrate this knowledge.  I will often know something, yet it will take many attempts before I am able to put that knowledge into practice.  You could say that my actions lag way behind what I know or believe.

In the 12 step rooms there is a saying – “self-knowledge avails us nothing.”  What is meant by this is that we can intellectually know something and yet that knowledge does not produce a change in the way we behave.  The only way to change is by doing something differently.  How easy that sounds and yet, look around, people have struggled with this since the beginning of mankind.  Addiction is the obvious example, but there are other, far more subtle things that are great examples of how we want to do something – eat better, exercise, be polite, more friendly, etc –  we know it would be better if we did whatever it was, only to find ourselves unable to do it.  Behavior modification, were it as helpful as many seem to believe, should have helped anyone who has ever attempted to “just stop” and yet it has shown itself as useless.  Unless behavior modification is used in its most extreme form, which I would argue is not dissimilar to torture, in which case it will and does produce short-term change, though at a terrible cost to the person being “treated”, it does not help those of us who are trying hard to change our less than ideal ways of coping with discomfort, fear, pain, and suffering.

Change is hard.  Changing the way we act is even harder than changing a belief.  Yet, we expect and ask children to change all the time.  We tell them something and then when they do exactly what we’ve asked them not to do, we wonder why.  Except that they are behaving the way most of us behave.  Adults are no exception to this.  Now add a neurology that makes communicating more complicated and all kinds of misunderstandings develop.  Conclusions are drawn, ideas and theories are created to explain, and yet…

Recently Emma was asked about something that happened at school.  She wrote, “if every time you tried to speak, the wrong things came out of your mouth, how would you feel?”  We live in a society where people knowingly say and do hurtful things all the time, yet those people are not put in institutions, given random medications against their will, labeled as “low functioning, ostracized, given electric shocks, condemned and treated as though they were criminals.  I’m thinking of a number of radio and talk show hosts whose ratings soar the more outrageous and venomous they are.  These people are rewarded for such behavior!  I’ve never met a parent who said, “I want my child to grow up to be rude, disrespectful and a bigot.”  And yet…

Today I will suggest a few topics and ask both my children what they’d like to discuss.

Em & N. ~ 2010

Em & N. ~ 2010

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Respectful Engagement

Posted on April 8, 2014 by | 22 comments

Respect.  I think about this word a great deal.  There are things I do, things I think in any given moment are examples of me teaching respect and yet in the teaching I am not modeling the respect I am trying to teach.  Here’s an example of what I mean –  (this example is fairly mundane, but it serves my purpose because it’s something that most of us can relate to.)

Let’s say Emma and I are in a new place.   Somewhere, perhaps like the place we recently went to give a talk on Autism Acceptance, where most or all of the people are strangers.  As we enter the room I notice someone I do know and they walk over to say hello.  My upbringing dictates that I introduce this person to my husband and daughter.  I do this by saying, “Hello _______, this is my husband, Richard, and my daughter, Emma.”  The person nods and says hello, maybe they even extend their hand.  My husband without thinking, says something along the lines of “Hello _______, it’s nice to meet you.”  Maybe they shake hands.  My daughter turns away saying nothing.  I am aware that this is not the conventional way (polite) to greet someone so I, without thinking, direct her, “Emma say hello to _________.”

I know enough not to ask her to touch the other person, even if they’ve extended their hand, but I forget that there may be a good reason for her non-greeting.  Perhaps the lights are too bright, or all these strangers are too much, perhaps she is overwhelmed, or the noise is making it difficult for her to concentrate on any one thing.  Perhaps she senses this person is not someone she gets a good vibe from, perhaps the person is standing too close to her.   Regardless of whether I know what could be causing her not to say hello, demanding that she do so, is not the best thing for me to do.

Instead, I might lean down and whisper in her ear, “Do you want to try saying hello to _____?”  If she does decide she’d like to and can, fine and if she cannot, for whatever reason, then that’s fine too.  But before I say something like this I will want to have done a lesson plan around “social niceties” or the things people say to each other and why they do so.  This is the ideal.  However this is not what I always do, because I forget, but these are the little things I constantly think about.  How can I parent better?  How could I have approached that situation more respectfully?  How can I use this as a teaching moment, not just for my daughter, but for myself?

One of the things I’ve learned over the years is that kindness, directed toward myself and others is the single best way most of us learn.  When someone yells at me, I don’t learn, in fact, I shut down.  Even if the person does not yell, but criticizes me, scolds me, directs me to do something without explanation, I feel myself becoming self-conscious or worse, shutting down.  I close in on myself.  I can’t hear what the other person is saying.  I become engaged in an internal battle.  When someone is respectful and kind, I am open and much more likely to listen to them.

People say things like – “oh but that takes such patience,” or “who has the time to do all that?”  I understand.  But I know that the other way, while easy and perhaps quick, is nothing more than a quick fix, if that.  The person may say the words I’ve just directed them to say, but the next time I will go through the same process.  But there’s an even more important piece to all of this, because one can argue, who cares about social convention?  Why should any of us care?  Why should we say hello to one another?  None of this matters.  And I agree, none of this is really the point, the bigger point is that I want my children to understand that we live in a world filled with other people who may or may not share their neurology and that many of those people when met for the first time may offer their hand, if in the United States, and say hello.  I want my children to not be put off by this, but know that they have the option to say hello if they are able to, or not and that I will be respectful of them no matter what their response is.

Directing my daughter to say words that I give her, is not being respectful of her and it also is not presuming competence.  When I give her words to say, I am allowing my issues around social convention to take precedence over respect for my daughter and her sensitivities to her environment.  I want to do better than that.

*I purposely have used the present tense, as this is something I continue to explore and am trying to do things differently.  This is very much a work in progress!

Dressed for spring rain - April 8th, 2014

Dressed for spring rain – April 8th, 2014

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Thoughts On Thinking

Posted on April 7, 2014 by | 32 comments

Friday evening I asked Emma whether she wanted to use the laminated letter board or a qwerty, bluetooth keyboard connected to the iPad.  She told me she wanted to write using the keyboard.  Emma has written on the keyboard during her RPM sessions with B., but this is not something I’ve attempted.  I have been reluctant to use the keyboard because Emma has done so well using the laminated letter board with me and I’m always worried about changing something that’s working well.  But when using the letter board I have to transcribe as she writes or hope that I’ll remember what she’s written, whereas with the keyboard it automatically types directly onto a document within the iPad.  Often I can’t remember what she’s written, or think I have remembered correctly, only to find out later I did not.

This was the case Wednesday night when Emma wrote in front of an audience at CoNGO.  I hadn’t stopped to transcribe her words as she wrote them, thinking I’d be able to remember, but once she’d finished the sentence, I couldn’t remember.  Afterward, when we thought we hadn’t recorded our presentation, I tried to remember what I thought she’d said – “Autism is not what parents want to hear, but I hope that will change as more people meet someone like me.”  What she actually wrote, once we found the video recording, I was disconcerted to learn, was – “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.”  That is a subtle, yet significant difference.  I’m so sorry Emma for getting your words wrong.

Our goal has always been for Emma to write on a keyboard and eventually be able to write with the keyboard resting on the table, so that no one need hold it.  That she wrote both Friday evening and over the weekend on the keyboard is a huge leap forward and very exciting!!

So.  Friday evening Richard asked Emma for permission to ask her a few questions about thinking.  Now for those of you who know Richard, you will smile as you know this topic is one of his favorites.  He loves nothing more than to read and discuss thinking, consciousness, dreams, reality, and anything remotely related.  These are the topics Richard explores in his writing and the things he is fascinated with.  Richard wrote on Emma’s Hope Book FaceBook page – I “think” of “thinking” as my constantly chattering internal dialog.  I have long suspected that Emma has either NO internal dialog, or very little, and that what she “thinks” of as “thinking” must be very different from what I “think.”

Emma generously agreed to allow her dad to ask her a few questions though she did remind him that she had the timer on.

*I need to interject here that the following conversation is representative of Richard’s “thinking” and Emma’s as she describes it.  No one is suggesting that ALL people, either autistic or non autistic think as either of them do.  It would be a mistake to assume Richard is somehow representative of ALL non autistic people, though many may relate, or that Emma is representative of ALL Autistic people.

Richard:  Mom and I have this internal dialog going on all the time and that’s what we call “thinking”. How does this differ from the way you think?

Emma: I only think in voices when I am working with you (Ariane).

Ariane: Is this also true when you write with others?

Emma: Yes.

Richard: Do you see our internal dialog as an advantage or disadvantage compared to your own way of thinking?

Emma: It is more distracting than the way I think.

Richard: Tell us more about how you think. If it’s not with an internal dialogue, what is it like?

Emma: Know that I am almost always happy and take great pleasure in sounds, color, fabric.  Everything in life is beautiful if you are able to be here.

*Whoa!  “Everything in life is beautiful if you are able to be here.”  

Richard: I’m so used to thinking with an internal dialogue. It’s hard to imagine thinking without talking to myself.

Emma: Have you felt this always?

Richard: When I was a kid I didn’t talk to myself all the time. I was probably a lot happier. As I grew older, my internal dialog became stronger and now it’s there most of the time. I have to meditate or concentrate to temper it.

Emma: It’s too bad that you have difficulty.

Richard and I looked at each other and shook our heads in amazement.  Then Emma began to laugh and we joined her.

*The keyboard we are using is a Kensington Keyboard.

**A brief update on Emma and Ari Ne’eman’s presentation at CoNGO last week that we video taped, thought we hadn’t then found we had.  We have not had time to upload it and we haven’t received approval from Ari yet, so it may take a few more days before we can post all or part of it here.  Bear with us.

Emma types on a qwerty keyboard

Emma types on a qwerty keyboard

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Emma Discusses – Awareness

Posted on April 1, 2014 by | 20 comments

“Awareness is deciding something is worth your time and attention.  It is not necessarily good.  Real awareness needs to be balanced.” ~ Emma Zurcher-Long

I asked Emma whether she wanted to write something about autism awareness since April 2nd is World Autism Awareness Day, designated by the UN in 1989.  Emma wrote,

“Autism awareness really does me very little.  It is not honoring or making my life easier.  So many believe I am unintelligent even though I write well.  Until they see me writing, it is not what they assume.  What good is awareness if it doesn’t tell people the truth?”

Ariane:  “What is the truth?”

“The truth is, so much of what we perceive compared to another, isn’t known.  People see me, but don’t understand what they are seeing.  I want people to know what it is like to have smart thoughts, but not be able to prove it.

“No one wants to be treated with impatience.  I am happy when people are aware of how bright I am.  Maybe they have a special light bulb for that.  Shine some awareness on those of us who can’t talk the way we think.”

Texas ~ September, 2013

Texas ~ September, 2013

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Experiencing Without Words

Posted on March 31, 2014 by | 12 comments

Over the weekend we played a story telling game.  The round robin story telling was an idea Emma came up with during an RPM session she had a few weeks ago and it seemed like a great idea for a rainy Sunday morning.  (Unfortunately, I didn’t get everyone’s permission to print our story here.)  Suffice it to say, it involved rain, a family made up of two parents, a girl, a boy, and a tornado carrying a herd of walrus.

Emma began the story with one sentence, then each person added a sentence and we continued going around in a circle.  Emma spelled out her sentences by pointing to letters on her laminated letter board, my husband and son said their sentences out loud while I transcribed what they said, but when it was my turn, I found it very difficult to think of what to add out loud, and so I wrote my sentence down first and then read it to the group.

After each person’s contribution there was much laughter and ad-libbing.  At one point Richard, who, it must be said, couldn’t help himself, constructed perhaps the longest, and wonderfully, creative run-on sentence every spoken.  He did look a bit sheepish afterwards, but the story moved along until it was Emma’s turn again, where upon she said, “All done.  No.  You have to work!”  Her comment reminded me that for Emma this “game” that was intended as fun, was “work” for her.  As no one else was viewing it as work we stopped after the fourth go around, at which point Emma raced off.

I think a great deal about how hard it is for Emma to communicate, whether that is through spoken language or writing; they are both hard.  This surprises many people who assume, as did I, at least in the beginning, that someone who cannot rely on spoken language to communicate, would be more than a little relieved to finally find a way to express themselves by writing instead.  However Emma has told me on several occasions that while she is relieved that people finally can understand her when she writes, it is also very, very difficult for her.

Emma recently described writing as, “It’s too hard work,” but it’s easier for the rest of us, particularly as it tends to be more accurate of her thinking than her spoken language.  Not long ago Emma wrote, “I can’t talk the way I think.”   But it would be a mistake to then assume writing is easy or that she eagerly does it.  And I was reminded of all of this when it was my turn to come up with a sentence for the story.  I couldn’t come up with a sentence through spoken language, but had to write it down first.  What if everyone had insisted that I say my sentence out loud, what if someone had said that it was against the rules to write the sentence down first?

I can tell you it would have been much more difficult for me, though it still would have been fun.  But what if I experienced the world in other ways and not with words?  What if my experience of people and things was not through pictures, words or anything that can even be described with words?  Wouldn’t both written and spoken language through the use of words be equally difficult for me?  What if my experience of the world was completely different and having to translate this experience into words was actually impossible?  What if so much was lost in the translation that it no longer represented my experience?  What then?

Em with her string

Em with her string

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Talking By Writing

Posted on March 27, 2014 by | 25 comments

*Emma gave me permission to write about the following…*

Every Tuesday afternoon I go to Emma’s school where Emma and I do a sample lesson, or Emma answers questions from staff or sometimes someone wants to share what they worked on with her and what her answer was.  As Emma “talks” by pointing with a pencil to the letters on a laminated letter board she twirls her string, and often, while she is “talking” by writing, she is also talking, as she describes it, “with my mouth” at the same time.  When I mentioned this to her at our last training session she smiled and wrote, “It is hard for non autistic people to multitask as well as I can.”  Which was one of those frequent – oh-my-gosh-Emma-you-are-so-fabulous – moments, because, really, not only does she have a wickedly wonderful sense of humor, but whoa(!) how right she is!

Later Emma wrote in answer to the question, “Is it problematic for you to switch from the letter board to a qwerty board, she wrote, “No.  It’s not a problem.  Is it hard for you?”  I was so taken aback by her response, because, honestly I had not ever considered that it isn’t a problem for me, so why did I assume it would be for her?  And yet, I have.   This was yet another reminder to me of how I presume competence as best I can with all that I know and yet, am humbled by constant little nudges urging me to go farther.  How beautiful is that?  Seriously?!

When I began witnessing people who use spoken language like my daughter does or who do not speak at all, but write, often poetically, often beautifully, I was astonished.  It was unlike anything I had ever seen before.  It’s been close to two years now since that first time I witnessed in real life someone communicating this way.  At first I was so incredulous, all I could do was watch and try to take in what I was witnessing.  After many encounters, repeated by so many people, men, women, teenagers, boys and girls as young as seven or eight I went from shocked amazement to a more calm feeling of  excitement, but even now, having spent nearly every day watching my daughter write this way, I often still feel like I’m in a dream.   It is as though I have been allowed into another dimension, and it is more beautiful than anything I ever believed possible.

"Talking" with the letter board

“Talking” to Soma using the letter board

 

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On Being Judgmental

Posted on March 26, 2014 by | 61 comments

The other day a parent felt I was being judgmental because of my Demanding Speech post.  I felt terrible that was her take away from the post, but I also understood why she felt that way.  One walks a fine line when criticizing current therapies or suggesting we do things differently while not sounding preachy or judgmental to those who feel the very thing I’m criticizing has helped their child. And I have to admit here that in writing the previous sentence I initially wrote, “suggesting we do things better for the sake of our kids…” which, yeah…  that sounds judgmental and yet…

So how do we protest, how do we talk about things, things we feel outrage about, things we believe are wrong without sounding like all those “autism experts” I so often criticize here on this very blog?

And the only answer I have, for myself and anyone else, is – stay open to other points of view, be willing to listen and learn.  But how do I speak my truth while understanding that what I say may upset some?  I don’t think it’s possible and I’m okay with that.  Not everyone is going to agree with me.  That’s okay.  I don’t agree with the vast majority!  But what I won’t do is stop talking about all of this.  I won’t.  And while I talk about all of this, people comment and email and reach out and give me feedback and many times after reading what they’ve written I rethink my position. I change, I grow, I learn.  All of this is a process, and by that very fact it means that what I believe, is in a state of constant flux, there’s movement, more to learn, more to understand.

I know what it feels like to feel another person is judging me.  It isn’t a great feeling.  And it doesn’t help me understand the other person’s point of view and it definitely doesn’t make me feel particularly inclined to stick around to hear what else they might have to say.  In fact, when I believe someone is judging me, my visceral response is to retreat or fight back.  But, if I can let go of that initial desire to flee, I often learn, even if it is a lesson in verifying what I already thought.  The most important thing I can do is not preach, not convince, not judge, but speak honestly about my experience.  If that resonates with others, great, if it makes people angry, so be it, if it alienates some, okay, but this blog is about our experience, mine, Emma’s and Richard’s.  I don’t speak for anyone but myself.  I don’t pretend to know what Emma’s experience is, even when she writes about it here.  The best I can do is interpret it, respond to her words, talk about what it means to me and ask more questions, but that’s it.  The same goes for my husband, I don’t and cannot speak for him.

And in the end, that’s all any of us can do.  I hold deep convictions about much of what I see going on with autism.  I object to most of what is commonly believed to be the “truth”.  Yet I also know I continue to get things wrong.  I have tremendous humility when it comes to all of this.  I am constantly learning.  People, usually Autistic people, are generous enough to share with me their experience of things and it changes my thinking.  I listen. I revise.  I tweak my constantly shifting beliefs.  I ask questions.  I continue to learn more, I realize how I haven’t gone far enough in my thinking.  I  dig deeper.

But when I am in a room where a teenage boy is being watched like he is a prisoner while eating his lunch, pelted with questions he cannot easily answer by speaking, his favorite food, in this case, rice, withheld until he finishes some other food, again in this particular case fresh, cut up fruit, overseen by someone else, whose only real power is that they can speak easily while the boy cannot, spoken to with barely concealed impatience and irritation, I’ve got a problem with that.  When I see a group of people being treated as unequal, with less respect simply because their neurology is in the minority, I feel physically ill.  When someone who cannot communicate through spoken language is treated as incompetent I feel sick.  When people speak to my daughter or speak about her, often in front of her, with exasperation, irritation, barely disguised annoyance, I feel enraged.  When a human being is treated with condescension by another human being simply because that person is deemed less intelligent regardless of whether this is true or not, I am motivated to speak out.

This is personal, it isn’t just some issue I feel strongly about.  Do I feel judgmental?  Sometimes, but more often I feel  sad.

What follows are a few photos that make me happy…

Henry and me laughing as Emma tries to convince Henry that the water isn't freezing cold

Henry and I laughing as Emma tries to convince Henry that the water isn’t freezing cold

My friend Ibby

My beautiful friend Ibby.  Photo taken by Emma

One of my favorite photos of Emma as a baby, because even then her personality shines!

One of my favorite photos of Emma as a baby, because even then her personality shines!

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

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Some Thoughts on Stereotypes and Empathy

Posted on March 25, 2014 by | 34 comments

Stereotypes are more problematic than not and yet most people, even though they may be unconscious of this, behave according to what they’ve been told or have observed to be true, even though it may not be true.  So, for example, if we are told Autistic people lack empathy, we will unconsciously be on high alert for any example of this.  In doing so, we behave in accordance with the very stereotype we are critical of.  In other words our own empathy suffers.

In the case of war, where we are fighting an “enemy” this type of stereotyping is actively sought and pursued so that those who are on the front lines can justify their actions.  We are told the enemy are “radicals” or “terrorists” or “fundamentalists” or “extremists” or unduly aggressive, thus justifying our own aggression toward them, which is seen as “good” and “necessary”.  Often we are told the enemy is deceitful, even “evil” or “bad”.  Stereotyping is usually negative, but not always.  It is a way to claim pride and feel a sense of belonging to one group, while seeing the other group as different, lacking understanding and often threatening.

To take this a step further, the people, usually a group of people who are not the majority, such as those who are being grouped into the “lacking empathy” category, may also internalize this idea and be on the look out for instances where they “lack empathy.”  And yet, most of us can find examples of this if we look hard and long enough, times when we have behaved in ways that would be seen as “lacking empathy”.

Empathy is both a feeling and the ability to sense another person’s emotions as well as imagine what they might be thinking or feeling, coupled with the ability to communicate all of this.  If communication is even remotely an issue, expressing one’s empathy will be difficult.  If you are in a country where the spoken language is not one you understood or know, its culture one you are not familiar with, would you be able to adequately express the empathy you felt in a way that would be recognized and understood?   Is it possible you would be misunderstood and labeled as something that you are not, simply because the cultural norms did not come naturally to you or you had not learned them and could not express yourself in a way that the other group recognized?

Additionally being on the defensive, feeling constantly attacked and criticized might also erode your ability to express yourself.  Feeling anxiety, judged, and ill at ease might put you on high alert.  It’s really tough to feel for other people when you are in a state of almost constant attack.  This is counter intuitive to all human beings regardless of their neurology.  But saying that those who are under almost constant attack (and for those of you who will argue that this is hyperbole, please know I am not suggesting every single person whose neurology is Autistic is feeling attacked, rather I am pointing out that many are and have been saying so for quite some time now) lack empathy is an interesting twist, exonerating one’s own actions and part in all of this, while holding another to a higher set of standards.

While stereotypes may help one identify with a specific group, they are largely negative and encourage assumptions that, more often than not, exclude rather than include.   I keep hoping we are heading toward a more inclusive society, but so many of the current debates suggest otherwise…

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

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

This post was inspired by yesterday’s post over on  Diary of A Mom, that Jess alerted me to.

Related Links from others:

Empathy as a Form of Communication by Michael Forbes Wilcox
Not Guilty by BJForshaw
I am in here by Mark Utter
The Sound and Worry By Arianna
Inventing Empathy by M Kelter

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