Tag Archives: autistic

“The Mean Voice” – Facts vs Feelings

“You get to write about thinking feelings are facts,” Emma typed this morning.  Then she smiled at me, got up, and walked away.

Six months into this whole homeschooling thing and I’m just now starting to figure out how I can work this blog into our busy schedule.  Emma wrote the other day that she would write a blog post once a week or, she thoughtfully added, “suggest topic for you to write about.”  Then last week she wondered if she might ask questions that she hoped readers would want to respond to.  The first of that series with all the wonderfully considerate, insightful and thoughtful comments and answers to her questions from readers, can be read ‘here.’

My goal is to carve out time Tuesday and Thursday to post something on this blog.  Only time will show how well I do with this goal.

But for today, Emma has given me an assignment.  “You get to write about thinking feelings are facts.”  When she typed this sentence I immediately thought of “the mean voice.” This is the voice in my head whose sole purpose seems to be to give a running critique of everything I’m doing and why it’s all wrong.  The Voice is harsh and can be very, very cruel.  It will say things to me that I would never say aloud to another human being, no matter how angry I might be.  The Voice feels real, it says things in a matter-of-fact way that makes me think the words it is saying are true.  When I believe The Voice all joy is deleted.  Any glimmer of hope is snuffed out.  The Voice tells me I suck and whatever I’m doing sucks.

But I’ve come to understand that The Voice is not to be listened to, which is easier thought than done.  It does not tell me the truth, it is mean and it says things that are not based in fact.  I call it “The Voice” but in fact, it is fear.  It is hopelessness.  It is anger.  It is a whole medley of emotions, some of which I cannot even identify or untangle to identify.  The Voice is feelings and it is most certainly not “fact”.

Feelings are not facts.  Feelings are not facts.  This is something someone said to me early on in my addiction recovery.   It was one of those “slogans” that at the time made no sense to me.  Well of course feelings aren’t facts, I remember thinking to myself.  Anyone knows that.   They’re feelings.  But what I didn’t know then and what I still forget now, is that when I’m upset or scared or angry, the conclusions I come to as a result of having those feelings are also not facts.  They are feelings and the two are very, very different.

So for example, if I’m afraid to do something that I really want to do, like write this book that Emma and I are working on together, I feel tremendous fear.   The Voice kicks in and will say things like, “What the hell are you doing?  Why are you even trying to do this?  The last thing the world needs is a book written, even co-written by you.  Who are you to write about your experience with this?  Who do you think you are?  No one wants to read what you think.  You think this will be helpful to someone else?  What kind of narcissistic, self-involved crap is that?  You can’t do this.  You suck.”  If that doesn’t stop me in my tracks The Voice amps it up a notch and gets even more vicious.

People have suggested imagining a volume control dial and mentally visualizing turning the volume down.  Others have suggested saying, Thank you for your thoughts and then doing the thing I’m terrified of doing anyway.  Others have said – just don’t listen to it or don’t believe it.  But none of that has had much impact or made a difference.  Logically I know this voice isn’t real.  It’s in my head.  I know it isn’t some divine, all-knowing voice.  I know it is mean.  I know all these things, but when the emotions come it is like being pulled under and the energy it takes to keep my head above the water, the energy it takes to just breathe is exhausting and sometimes, most of the time, I don’t feel able to fight it.

When I was an active addict The Voice told me to go and eat.  Go ahead it would say.  Oh go on, you deserve it, The Voice would encourage.  You’ve had a tough day, give yourself a treat, eat a dozen doughnuts.  If I fought it, it only got louder and more insistent.  Oh go on, GO ON!  And I would.  I couldn’t refuse.  I felt out of control and helpless.  I felt unable to stop.  Now, almost two decades later, I know to “out” that particular voice.  I know to tell on it.  The Voice doesn’t like that.  And saying to another human being who understands, who can identify, who can say – oh yeah…  wow, I so get that – is often all it takes now to give me that moment of grace so that I can pull away and not do that thing that will hurt me, the thing that it’s telling me to do.

While The Voice is usually no longer the boss of me when it comes to food and compulsive over-eating, it has never completely gone away.  It crops up when I least expect it.  It tells me things about myself that make me feel awful.  It makes me believe it’s telling me THE TRUTH.  I’m fifty four years old and I still find myself believing The Voice, not about food and eating, but about other things, healthy things I want to do or accomplish.  There’s another slogan used in addiction recovery – Progress not perfection.  And I am making progress, but it is very, very slow.  And to be honest, far slower than I’d like.  But then if I gauge myself from where I once was, the progress has been nothing short of miraculous, so maybe the next post will be about – progress, not perfection!  Unless Emma has another idea, that is…

I’m turning Emma’s topic over to all of you – “…write about thinking feelings are facts.”

The Mean Voice

The Mean Voice

Sensory Assaults

My friend Bridget wasn’t feeling great.  She felt off-balance and couldn’t walk and it was making it difficult for her to talk.  And then she told me the carpeting made her dizzy.  I hadn’t noticed the carpeting, but when she said this to me, I realized the pattern of the carpet was like an op-art nightmare, in sharp contrasting hues, the repetitive pattern was eye-catching and I suddenly wondered how I could have blocked it out.  But, you see, I had.  The carpet wasn’t a problem until she mentioned it and then I couldn’t not see it.  In addition, there was a plexiglass barrier that gave the sensation of being in an infinity pool, without any of the relaxation involved.  It was as though the carpeting spilled over the edge and disappeared into an abyss.  It was disconcerting and even frightening.

I held out the crook of my arm, the way a blind man in New York City taught me to do, years ago.  A stranger, he’d asked if I could help him cross a busy intersection.  At the time I was carrying my son in a Kelty pack on my back and had my then infant daughter in a snuggly.  When I offered my hand to the man, he told me it was easier for him if I crooked my arm and he then held that, it was more stable, but also gave him the ability to control his own movement more.  Bridget took my arm and we were able to make our way to the elevators without mishap.

It was like pain, you don’t realize how awful it is until it’s gone, and then you’re filled with indescribable relief that makes you hyper aware and surprised by just how bad the pain had been.  Afterwards you wonder how you managed it.  Realizations are like that.  Once you have them they’re impossible to undo or un-think or un-feel.  This is how it is with autism too.

A few months ago I was waiting for the cashier to ring up my groceries.  Suddenly a load bang sounded.  Without meaning to I jumped and turned toward the sound.  It was another cashier smacking a paper bag open.  She was smiling and the cashier next to her did the same thing.  Other cashiers began to laugh and followed by banging their bags open.  I was furious.  The noise felt intolerable.  I wondered what I might say to make them stop.  I went through various scenarios in my mind, from yelling obscenities, to self-righteous indignation, to calling the manager.  And then they stopped.  The deafening sound that felt like a physical assault ended and I realized I’d been holding my breath.

As I walked home with my groceries I thought about how angry I’d gotten and how my body froze and then I thought about how awful it would be if I was assaulted, bombarded with intolerable sounds all the time or lighting that had a similar effect and suddenly, very suddenly, I understood something I had not understood before.  I understood what people meant when they suggested that sensory issues can affect one’s actions, or as they say when referring to autism – how sensory issues can result in “behaviors”.

Had the banging noise continued in the grocery store I would have said something, and it would not have been kind or thoughtful or restrained.  I would have had “behaviors” as a direct result of that awful noise.  Had someone told me to calm down I would have been even more furious.  My actions would most certainly have been viewed as over reacting or needlessly extreme.

Had I not been present when my friend Bridget told me how awful she felt and that she needed to sit down for a second and then told me why, I would not have noticed the awful carpeting nor would I have understood how the pattern of a carpet could disrupt one’s equilibrium so much so that one might lose the ability to speak.  These are the things I am learning.  These are the things that make the difference between understanding, and maybe even being able to do something helpful and not.

An Innocent Paper Bag...

An Innocent Paper Bag…

Actions Taken and Puberty

“Actions taken that get responses you don’t want.”

This was what Emma typed in response to my question, what should we write about on the blog today?

Emma proposed making one blog entry a week, possibly asking for readers to answer some of her questions, but before we could continue, she had a  few concerns.

“Would thinking about stressful times cause upset?”  she typed.

I said that it might, but we could put a trigger warning above with the topic so that if the topic was something specific, people would be warned and could stop reading.  As I said this to her I marveled at her endless compassion and concern for other people’s feelings.  Then I said I believed that sometimes it can be helpful to know you aren’t alone in feeling and thinking things that you don’t necessarily know others feel and think, at least this has been my experience.

We discussed the experience of going through puberty and how adults will often talk about their children and what they believe they are going through, but not about their own experience of going through puberty.  “Maybe we should ask people to share their memory of puberty and what was the most difficult part about that period of their life?” I suggested.

Emma wrote, “You can ask and please say that if this question causes stress to not answer and next week I will ask a fun question.”

“That is such a thoughtful and kind thing to say, Emma,” I told her.

Before we ask for other people to share their experiences with either of these questions, Emma and I asked Richard to talk about “actions taken that get responses you don’t want.”

Richard said, “I put work out into the world, like my book and I want people to enjoy it, but some people say all kinds of nasty things, or let’s say I wrote a blog post and my intention is to be helpful to Autistic people and advocate for them, but because I’m not Autistic and I am highly opinionated, maybe I write things that are actually offensive to the very people I’ve meant to help.”

I asked Richard if this had really happened to him or if the last part was hypothetical.

“It’s hypothetical, but I certainly am capable of doing something like that.  People can do all kinds of things with good intentions that don’t get great responses.  To me the question is – what if you do things that you think are going to be helpful to yourself and other people and they aren’t and they aren’t appreciated either.”

I told Emma I would write about my experience with both these questions, so beginning with the first – actions taken that get responses you don’t want.

Saying something that is taken in a way I didn’t mean, particularly if it causes upset, anger or comes across as offensive.  There have been times when I’ve said something and not realized it was offensive until much later, but there have been other times when I’ve said something or asked a question and it’s been taken as meaning more than simply information gathering.

Puberty…

One of the things I really love about this question is that it’s one of those topics people don’t often talk about, at least not with any personal specifics unless it’s about someone else (often without that person’s permission) or in small groups.  So here’s the trigger warning – if the topic of puberty causes you stress, stop reading, otherwise, please join in and share a memory or an experience of going through puberty.  What was it like?  What was most challenging?  Please keep this about your own experience.  If you want to remain anonymous, you can always send your comment to the blog email address:  emmashopeblog@gmail.com or you can DM us on Emma’s Hope Book Facebook page.

We asked Richard to start things off: (insert smiley face here)

“It was the late sixties and early seventies and I became obsessed with – when will I have cool looking sideburns? –  I remember doing drawings of sideburns and imagining what my sideburns could look like.  I remember a lot of thinking about sideburns. They were emblematic of becoming a man.”

Okay, so I can’t really ask readers to share if I’m not willing to do the same, so here goes:

One of the more troubling memories I have of puberty was when I began to develop breasts and wanting to have them because most of the girls in my class already did and I was taunted by the boys at my school for not having any breasts.  They would yell, “hey flatsy!” at me when they passed me in the hallway or whisper it to me during recess.

But I also hated that I was developing them.  I had both feelings at once.  There was shame about my body for not looking like the other girls, but also fear and shame that I would.  I remember lying on my stomach at night, thinking this might limit or reduce their growth, only to put small wads of kleenex in my “training” bra to see what I would look like once I had them.

The larger issue, though I don’t think I was aware of it at the time, was the conflict of growing older and being excited by this, yet part of me wanted to stay a kid. And there was terror too.  I was going to say “fear,” but it was more than fear, it was real terror at the idea of looking more adult like and less kid like, coupled with growing into a woman’s body and not liking the attention that elicited, which interestingly enough ties this answer to Emma’s first question about – “actions taken that get responses you don’t want”  and very much encapsulates the essence of all that was problematic and difficult for me about puberty.

We’re turning these questions over to all of you now…

1.  Actions taken that get responses you don’t want

2. Puberty – what was your experience or a memory of that time in your life?

PubertyBoy2

Friendships

“Both of us writing this post is fine.  We are working together,”  Emma typed just now.

But first a short explanation is needed:  Twice a week Emma has an in person typed “chat” with her friend, Joey.  Yesterday’s chat was a little different because the person Joey usually writes with on Mondays was ill, so I asked Joey if he’d be okay with me holding the keyboard for both him and Emma.  He gave me the go-ahead and so I alternated between them, each taking a turn to type.

During their chat, Emma did what she often does, which is talk out loud.   Often she will talk about things that happened in the past, as in, “Maddy needs to sit down.  Maddy wasn’t nice to Emma” or it can be about the future as in, “chat with Joey,  get groceries, German, Math, Skype call with Granma, see Daddy, have dinner, sleep, wake-up, Skype call with Dr. C….” Emma wrote, “When my brain gets busy it remembers things that have been said to me or what I have heard.”  I wrote about this recently – Scripts – A Communication Bridge

As Emma and Joey typed with each other, Emma said aloud her nickname for Joey – JoeyAllison.  This is a nickname Emma came up with a few months ago when Joey unexpectedly appeared in the same place that someone named Allison had been, the last time we were in the building.

What follows is their chat, which they both agreed to share on this blog (I added punctuation to clarify with Emma’s approval):

J:  I begin this, you go next, not Monday schedule threw me.

(J. has a daily schedule and his and Emma’s “chat” wasn’t listed for Monday.)

E:  How was your thanksgiving?

J:  Good food I like, how about yours?

E:   Thanksgiving in two parts is the best way to celebrate holiday of gratitude.

(Emma kept saying out loud “JoeyAllison”)

J:  Liking nickname not much, but tolerating since hoping you will find another more likable.

E:   Joeyallison is etched into my brain, so hard to overwrite, but I will try.

J:   Knowing you make an effort helps, thanks.

E:  I don’t mean to hurt your feelings.   It’s meant in friendship.

Later Joey’s mom told me Joey’s middle name, which is oddly similar to the name Emma has taken to calling him.  I told Emma what his middle name was and she said it out loud several times, as though she were trying it out and then said, “good.”  Then she typed, “I will call Joey by his first and middle name to his face, if my mouth obeys, because he’s my friend while secretly saying JoeyAllison to myself.”

Friendship

Autism ≠ Developmental Delay

There were few things that led us more astray than the idea of autism being a developmental delay.  Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan.  (This post is not about Stanley Greenspan or his method.  His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal.  The private hell of regret is a cruel place to linger.  Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.”   In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell.  Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood.  Because people assumed  she spoke what she intended and meant, she was penalized for the words she managed to utter.  “Do you want to go fast or slow?”  “Do you want to stop or go?”  “Do you want to open the door or close it?”

Again and again the video shows us making assumptions about her actions.  We assume she has no interest in engaging.  We assume she doesn’t want to spend time with us.  We assume she is “in her own world.”  We make assumptions and we behave according to those mistaken beliefs.  We believed each word was a milestone, paving the way for more language acquisition.  We believed it made sense.  Lay the foundation, create a strong base of words for more to follow…  Use your words, use your words, use your words…

The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed.  This idea of a developmental delay bled into every single aspect of her being.  It was believed that her speech was delayed, as were her fine and gross motor skills.  Therapies were structured around this concept.  All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six?  At the time we didn’t question any of this.  Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.

As it was, we did not know.  We listened to the many professionals we consulted.  Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter.  It never once occurred to me that maybe, just maybe what she said was not what she intended to say.  It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider.  We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma.  Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing.  Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:

Emma’s Presentation

Tomorrow’s Presentation

“Rethinking Your Beliefs About Autism”

When the Body Does not Obey the Mind

Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004.  The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between.  It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else.  One day I hope the professionals parents are introduced to will be Autistic professionals.

My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”

Cynthia Kim, author of Nerdy, Shy and Socially Inappropriate ,  I Think I Might be Autistic, the blog Musings of An Aspie and owner of StimTastic said, “That waiting to catch up feeling is so insidious and one that I subconsciously lived with for a long time.”

My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”

Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”

So what are the consequences of believing autism is a developmental delay?

Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal).  It meant pursuing all kinds of therapies that never questioned the push for spoken language.  It meant not considering AAC devices, because she “had language.”  It meant encouraging my daughter to “use your words.”  It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught.  It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.

There are so many things Emma can do, that I cannot.  Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it.  My daughter amazes me every, single day.  As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!

Emma - 2006

Emma – 2006

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

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

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

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

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

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

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

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

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

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

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

compassion-energy

An Autistic Child is Murdered

Another Autistic child has been murdered by one of his parents.  This time it is a six-year old, little boy named London McCabe.  London joins a growing list of Autistic children who have been murdered in recent years.

A psychology professor who runs an “education” group for mothers of autistic children in California said, “quite frankly, I am surprised this doesn’t happen more often.”

Wow.

“I am surprised this doesn’t happen more often.”

The casual nature of this comment stunned me.

She then went on to say, “These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated.”  This horrifying statement is untrue, but beyond that, the suggestion that if our feelings are not reciprocated, it makes sense that we become murderous, is to make us so narcissistic, so incredibly monstrous as to be unbelievable.   This is Bruno Bettelheim’s famous “refrigerator mother” theory reapplied to Autistic children and it is just as awful in this new version as it was in the original.

Most Autistic children feel love for their parents, just as most non-autistic children do.  Even when their parents behave horribly toward them, even when they’ve been treated with contempt, ignored, bullied, ridiculed and publicly shamed by those who say they love them, even then, most children still love their parents.  As they grow older many may have more complicated feelings of despair, abandonment, become distrustful, anxious and terrified.  The idea that Autistic children do not feel intensely is an outrageously, misinformed idea.  Just because someone does not reciprocate in a way non-autistics understand, recognize or expect does not mean the feelings do not exist. 

It is extremely disturbing to read such a statement coming from someone who is treated with deference and as though she is an authoritative voice on the topic of autism and Autistic people.  This professor is one of a number of people who has a degree in psychology and has made inaccurate, misinformed and mistaken statements about autism and Autistic people, yet none stop to ask what the psychological damage is to the Autistic children and adults they demonize with their incorrect statements, not to mention the impact such statements have on a misinformed public.  Unfortunately, few seem to be asking any questions about any of this or even bothering to find out if such statements are true, including the newspaper that published her comments.

There is an increasing number of Autistic men, women, teens and even younger people who are writing about their experience of life, their relationships and the world.  I am surprised when I meet someone in the field of autism who does not follow at least some of the blogs so many Autistic people are writing.  The Resources page of Emma’s Hope Book has dozens of links to Autistic people’s writing.  The first 28 blogs listed are written by non-speaking Autistics.  One of those people is my daughter, Emma.  After a presentation Emma gave in New York City a few months ago, she and I had the following conversation:

Emma:  I hope people will question what they have been told.
Ariane:  I do too.
Emma:  Horrible ideas about people, cause many to do terrible things…
A little later in that same conversation, Emma typed, “Worry and fear are fueled by furious words spoken harshly.  Humor soothes, shining sunny rays spreading hope.”

As the mother of an Autistic daughter who cannot communicate fluently with spoken language, but communicates beautifully by typing, I am continuously shocked by the inaccurate information that is rampant on the topic of autism and Autistic people.  Yesterday Emma typed, “Understanding that all human beings want connection is natural and fundamentally human.”  And last week Emma wrote, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

For people who do not have the ability to communicate with spoken language and/or have sensory issues that impact each individual differently, expecting them to respond the way people who do not have any problem speaking and have never been assaulted by their environment, is relying on a false idea.  It is this false idea that continues to misrepresent so many.  It is this false idea that serves to hurt Autistic people.

The psychology professor told NBC News that mothers do not have the experience of their love returned by their child.   “That is one of the most difficult things for mothers” she told the reporter.

If this were true, it would be hard.  Years ago, when I once believed a great many things about my daughter, that I now know are not true, it was an awful feeling.  But it is far worse to be that child who loves, but is believed incapable of love.  It is far worse to be so thoroughly misunderstood, to be constantly misrepresented in public, to be thought so problematic that people sympathize with the mother who murders you… that is far more horrific than anything I will ever experience in this world.

London McCabe

London McCabe

Ideas, Insights and Discovery

This morning I had an idea, which turned out to be something I thought was a good idea, only to find that what might seem like a good idea to me, is not necessarily a good idea to my daughter, and the reasons why were not something that ever occurred to me.

I am continually surprised by the insights Emma, so patiently, gives me and am reminded again and again that my assumptions limit my views.  Thank you Emma for giving me permission to post our conversation.

Ariane:  I thought we could begin the day by discussing who you might like to interview and about what topic?

Emma:  Is the way here, thinking, knowing, and asking about another, helpful?

Ariane:  I think it’s interesting and certainly can be helpful to get to know other people’s experiences of life.  Asking is a great way to understand another’s perspective.  Who would you like to interview?

Emma: Using questions to sing truths meaningfully speaks to all.

Ariane:  That’s so true!  Music is a universal language that can transcend words.

Emma:  What did those we cannot ask, say?

Ariane:  Who are you thinking of, Emma?

Emma:  Those who cannot speak and have no one who believes in their ability to communicate in other ways.

Ariane:  Here’s the thing though, we can ask.  We may not get an answer we understand, but we can still ask and I think that’s the beginning, right?  We ask anyway and then do everything we can to understand the answer, even if it’s not in spoken language or in ways we understand at first.

Emma:  Understanding that all human beings want connection is natural and fundamentally human.

Ariane:  I agree.  So Em, what was it like before you were able to type?

Emma:  Days bloated with tears, frustration, anxiety and raging questions that only made daily living harder.

Ariane:  Ah…  can you tell me more?

Emma:  Thinking and wanting to ask questions, but knowing the words would come out wrong was too painful, best to silence asking than to be in the smothering feelings of tremendous frustration.

Ariane:  I imagine interviewing someone must be hard, even now that you can type.  Would you say that’s true?

Emma:  Sometimes ease is not an option.

Ariane:  You do not need to ask any questions unless you choose to, Emma, I wasn’t considering any of this when I first introduced the idea.  I’m sorry.  What else should we do right now?

Emma:  How about a conversation using music and no words?

Ariane:  Great idea!

Some of the instruments Emma chose for us to use in our "conversation."

Some of the instruments Emma chose for us to use in our “conversation.”

“Mistaken Beliefs People Have”

I asked Emma what she wanted to write about this afternoon during her writing session.  She typed, “Deconstructing the mistaken beliefs people have.”

I encouraged her to continue and asked what she was thinking of specifically.  She typed, “Mostly what people think they understand there cannot be, when talking about autism, creating lots of bad ideas that attract unoriginal therapies we must put up with.”

“Wow!  Keep going,” I urged.

“Actors playing roles the audience greets with enthusiasm, but an autistic person who doesn’t speak as expected, or at all, is booed off stages throughout the world.”

“Such a great point,” I said.

Emma typed, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

She smiled and then typed, “Put it on the blog!”

And so I am.

Austin1

Question for Non Word Based Thinkers

Four mornings a week Emma begins the day with a Skype call with a professor in New England who is a bio-chemist.  We call him Dr. C on this blog.  They have a close relationship and their conversations flow easily between them.  I am very much the observer most of the time.

This is a sample of one of their more typical exchanges:

Dr. C:  So if water were linear and not bent what effect would this have on life on Earth?

Emma:  Hydrogen would not be able to find connections to create networks, life as we know it could not be.

Dr. C:  Right, so there would be no dipole or tiny magnet, thus water would not align with a + or – side….

The session before this one, Dr. C asked Emma, as a homework project, to construct a Benzene (C6H6) model, which Emma then did.  It looks like this:

Benzene

Benzene

The final piece of the homework assignment was to draw the corresponding Lewis Bond Structure.  This proved much more difficult and took about five attempts before she drew the structure below. (It is awesome and fabulously impressive!)

Lewis Bond Structure

Lewis Bond Structure

The Lewis Bond Structure is basically a replica of the actual three-dimensional model, so much so that you can literally place the model on top of it and it will pair up.  While making the molecular models of things like water, ammonia, methane and carbon dioxide are now fairly easy for Emma, drawing the Lewis Bond Structures are not and it reminds me of a similar problem that writing, handwriting and to a lesser degree typing presents.

I would love to hear other people’s thoughts on why this might be so, but watching Emma cheerfully putting together these models is absolutely fascinating.  And it makes me wonder if this isn’t a key to better understanding how teaching methods might take a page from organic chemistry…

If one thinks in a more three-dimensional way, does it then follow that trying to write, formulate the words to correspond with the thoughts, would present a whole series of challenges?  Doesn’t it suggest that this is more than a “word retrieval” issue?  I’m wondering if there even IS a word retrieval issue, (I plan to ask Emma later) but instead there’s a spatial issue presenting itself as non word based and therefore very difficult to transcribe.

Thoughts?

New Beginnings

Emma suggested I write about “new beginnings and offering ways to practice tolerance and hope for those who despair.”

I asked Emma what she suggested to those who are in despair.  She typed, “Best to give despair less space.”

“Yeah, okay.  How do you suggest people do that?” I asked.

“By filling the mind with all the beauty that is life,” Emma typed.

Yesterday Emma, B. and I talked about what happens when one becomes overwhelmed and how this is a human response, no matter what the neurology.  Overwhelm and feelings of not being able to cope are things all people feel from time to time.  We discussed different ways people try their best to cope: taking a break, taking a nap, acts of kindness, identifying all one has, gratitude, helping others, being alone, quiet, taking a bath or a walk, being in nature…

Emma described her feelings of overwhelm as, “my mind becomes jumbled and louder.”  Her words certainly resonated as this is exactly how I feel as well when everything seems too much and feels more than I can cope with.  Then Emma typed, “there should be practice before it gets too jumbled.”  This then led to a discussion about meditation and how those who meditate regularly call it “practice” because it is something one does daily and can help when “the mind becomes jumbled and louder.”

At the end of a lengthy conversation Emma typed, “I do want to try meditation.” And so we will.

The Buddha with Merlin

The Buddha with Merlin

Raging Screams and Shame

The other week I was present for the following typed exchange by two people.  Both are Autistic and both cannot use spoken language to communicate.  (Their names have been changed, as even though both agreed to have their words published here, this issue is sensitive and distressing, as well as deeply misunderstood by most non autistic people.)

Layla:  You have an extremely loud stomp.  (This was in reference to the noise Jerry made several days earlier and that Layla heard while working in a neighboring room.)

Jerry:  Is that a guess or are you certain?

Layla:  If you tried to hide it then you gave away the secret.

Jerry:  That is what I am behaving like on some days but proud I am not.

Layla: I heard it all and was curious and wanted to give help.

Jerry: Really do you believe that I am not evil?  (J. turns his head so he is staring down at the table.  His body is completely still.  It is a noticeable change from the way he usually sits while having a conversation with Layla.)

Layla:  Evil is not this and best to forgive yourself.

Jerry:  Thank you for not judging me.

Layla:  I  only ask for the same respect.

Jerry:  The deal is on.

I asked Layla and Jerry if I could transcribe their conversation and publish it here because non speaking Autistic people and the way they act in times of stress or overwhelm are so poorly understood.  Non autistic people who witness the actions (often termed “behaviors”) of a non-speaking Autistic person who is overwhelmed, perhaps frightened, often ashamed, unable to control their movements and unable to express themselves are often viewed with annoyance, irritation, fear and/or bewilderment.  As the non-speaking person cannot make themselves understood, they are at the mercy of those who care for them.

As I watched this conversation unfold I was struck, once again, by the disconnect between what most of the world believes about autism and Autistic people and the reality.  Jerry expressed profound shame and upset and Layla responded with  identification and deep compassion.

Their exchange reminded me of something Emma wrote about four months ago after having had a terrible night.  I wrote about that ‘here.’  One of the things she typed was:  “Pounding terror is all that remains.”  More recently she wrote, “The raging screams in my head are starving and want to consume me.”

Raging screams…  Pounding terror…

And I am listening.  I am listening and I will never, never love you less.  You are safe.  You are safe here.  I promise you, you are safe.

August, 2014

August, 2014

Choice

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

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

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

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

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

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

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

My daughter does not.

Em!

Some Emma Quotes

Each day is a day of discovery with moments of elation and excitement…  at least this is my take away from the past few weeks.  Here are a few of Emma’s comments along the way that she gave me permission to post.

Discussing black holes  (Dr. C and Emma are kindred souls.)

Dr. C:  What has happened to the atomic structure within a black hole?

Emma:  Opportunity to riot.  Structure is chaotic.

Dr. C:  Basically this is correct.  The gravitational pull is so strong that the atomic structure has collapsed.  Thus nuclei and electrons are fused together with no space between them.

Emma: Just like society during a riot.

Dr. C:  These societal people have collapsed onto each other to further this analogy.

Emma:  Exactly.

After reading  Act 1 Scene 1 of Romeo and Juliet

Ariane:  So what do you think so far?

Emma:  Understand that it is a heady play and play on words that pities human rage and love equally.

Reading and discussing the Texas Revolution 

Emma:  Because of dissent a culture was born.

Regarding the Trail of Tears and how the Cherokee were the last tribe to make the grueling 800 plus mile trek to the “Indian Territories” I asked Emma to tell me something about this picture. 

Trail of Tears

Trail of Tears

Emma:  Exodus.  Forced displacement of people with little choice.  It tells something about man’s wish for power.  Oppression is an ongoing story.

And finally on the topic of being home and not in a classroom setting - Emma typed, “naturally living in world’s infinite candy store of learning is to be in constant awe.”

Just Another Day…

I think this has been one of the best days of my life.  We had a full day of learning.   I’m exhausted.  Seriously.  I feel as though my head is going to explode.    We began the day with our daily Skype call with Dr. C.  Emma and Dr. C. had great fun teasing me about the fact that every time Dr. C. asked Emma something like, “How many F- will bind to a single Mg^2=?” Emma typed the correct answer while I looked on with befuddlement.  Every so often Dr. C  explained something incomprehensible and then asked, “Got it?”  Emma immediately typed “Yes!” while I muttered, not so quietly, “NO!”  As I was continuously slowing them down with clarifying questions, it was suggested, jokingly, that I put a metal bucket over my head.  Emma then typed to Dr. C. “Do you have one?”

As Dr. C. gave Emma increasingly difficult and complex questions, I resigned myself to the fact that I didn’t have a clue what they were going on about, but Emma did, and that filled me with unspeakable joy.  There was lots of uproarious laughter and shouts of “Go Emma!  You can do this!!” after each question and Emma literally bounced up and down with glee.

Science was followed by a break, then math, a break, American history, a break, creative writing, where Emma wrote the most amazing piece that, sadly, I cannot post because it has been submitted to an anthology. (Any who type to communicate are encouraged to submit.  Click the link ‘here‘.  I believe the deadline is October 1st.)   After Emma cranked out her absolutely mind blowing essay, we did German and then she had her book club with K. where they discussed George Orwell’s Animal Farm and the Russian Revolution.  Oh and did I mention Emma did all of this dressed in the most fabulous red gown?

Quick aside – We are so incredibly fortunate to have people in our lives who have enthusiastically and generously volunteered their time to help teach.  To those people, a million thanks.

Now it’s time to do nothing.  Emma?  She’s in the back with Richard watching Seven Wonders of the Universe, I kid you not…

Red Gown