Tag Archives: Autism

Sparrow Rose Jones’ E-Book

Posted on October 22, 2013 by | 14 comments

Sparrow Rose Jones wrote an e-book No You Don’t: Essays From an Unstrange Mind that is now available on Amazon.  The title comes from a powerful essay she wrote on her blog – Unstrange Mind –  in response to the many parents who have told her how they would like nothing more than to have their autistic child grow up to be like her.  Sparrow writes:

“I used to say, “I hope she’s much better off than I am,” or simply, “no, you don’t,” but over time I learned that parents refuse to accept that answer.  Maybe they think I’m doing that social thing where someone compliments you and you are expected to refuse the compliment a time or two, finally accepting it but maintaining your veneer of humility.  Or maybe they’re just baffled.  But sometimes they even got angry so I finally learned that I should answer, “thank you.  That’s very kind of you to say.”  Reinforced behavior — reinforced by social censure if I dare give the wrong response.”

Sparrow writes,

“… what I wish to come from this book:  a recognition of the shared humanity we all enjoy and a sense of connection among people coming together across a wide gap of experiential realities.”

And again from the essay – No, You Don’t:

“… they think, “my child is non-verbal.  My child goes to school and crawls around on the floor, meowing like a cat.  My child still wears diapers while all her same age peers have been toilet trained.  My child bites and hits people.  My child bites and hits herself.” And so on.

“Then they hear that I was many of those things, myself.  I was kicked out of the classroom for crawling on the floor and hiding under the tables.  My first grade teacher said I was “mentally retarded” and petitioned (successfully) to have me removed from her classroom.”

Further along she writes:

“I was raped.  I was abused — domestically and otherwise.  I was molested.  I was taken sexual advantage of.  I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it.  I want you to teach your children to value themselves and I want you to teach them to own their bodies.”

Sparrow writes about how she lives in “crushing poverty”, how she has spent a great deal of time homeless, couldn’t keep a job,and was “unable to consistently keep a roof over my head or food to eat.”

In her follow-up to her No, You Don’t essay she writes about the response she received because of it.  “There was a small group of people, though, who read my essay and became angry.”  She describes how she was attacked by parents of autistic children, “I felt like I was being punished for writing and all that compliance training kicked in as a result.  I closed down my blog.  I became physically ill from the stress and shame and ended up in the emergency room more than once as a result.”

The next essay is called “Bullies, Bullying, and the Struggle to Speak My Heart”.  The first sentence of that essay is:

“Bullies have been one of the most constant things in my life.”

Sparrow writes:

“An Autistic kid who is behaving in a violent manner is an Autistic kid who is seriously suffering on a daily basis and needs a lot of help.  And being able to speak doesn’t always mean that a kid will be able to tell you what is wrong.”

There are too many wonderful essays in this e-book to quote in one short post.  Sparrow writes honestly with tremendous compassion for all of us.  She ends her beautiful collection of essays with this:

“May my journey of self-discovery inspire you to journeys of your own.  Where there is life, there is hope.  Autistic lives do not always look the way you might expect or hope they would look, but you must keep a sharp eye out for the tender flowers as you travel and you must understand that Autistics often bloom in surprising and exquisite ways.  Don’t try to shape us to your garden or we may wilt.  Enjoy and foster our own, unique beauty in all its fierce wildness and you will find your heart and your truest reward there.”

No You Don't

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Posted in Autism, Autism Books, Blogs By Autistics

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When Words Don’t Reflect What is in the Mind

Posted on October 18, 2013 by | 33 comments

Imagine being asked a simple question, say a question about whether you’ve ever been to New Zealand.  Now you know perfectly well that you’ve never traveled to New Zealand, though you have a pretty good idea of where it’s located, however it’s not a place you’ve spent much time thinking about and it wasn’t even on your top-ten-must-travel-to-before-I die list.  But when you opened your mouth instead of saying, “No, I’ve never been to New Zealand, why do you ask?” all you could manage to say was, “Yes!” and not just a sullen sort of yes, but a happy, eager and enthusiastic “YES!”

So now the person begins talking to you about New Zealand and maybe they’ve just returned or they were born and raised there and they go on and on and then say, “What was your favorite place in New Zealand?”  Well, since you’ve actually never stepped foot in New Zealand this question is impossible to answer and so maybe you say “vanilla cake” because the one thing you know about New Zealand is that people are referred to as Kiwis and your only reference to kiwis is when you tried an actual kiwi once and didn’t care for it, but your favorite thing to eat is vanilla cake and besides vanilla cake makes you happy and this conversation is making you anxious because you said “YES!” when you actually meant “no” but things have moved on so quickly that you are feeling tremendous anxiety and wish you could just go somewhere away from this voice that is speaking so quickly about a place you’ve never been to nor have any interest in.

They look at you with that look, it’s a mixture of irritation and surprise, like they cannot decide whether you are purposefully making fun of them, or are tuning them out because you’re rude and have no manners or because you are actually hungry and are wanting to eat some cake.  So they give you the benefit of the doubt and say, “Yeah, well we can’t eat vanilla cake right now and anyway we were discussing New Zealand, so I’d like you to focus so that we can continue.”  Feeling frustrated and maybe even ashamed that they think you’re rude, you try to make a friendly overture by saying, “I like vanilla cake.”  But instead of smiling they look even more angry and so your anxiety kicks into high gear and you bite your hand to center yourself and because you are overwhelmed with frustration.

Suddenly all thought of New Zealand and anything else gets tossed out the window, because here you are biting yourself to center yourself and also cope with how frustrated you are, but all it does is make the other person furious.  You are so completely misunderstood and without the means to explain, you are caught in a web of other people’s assumptions.  “Stop it!  We do not bite!” the person scolds and maybe they grab your hand and hold it done at your side.  Their grip is firm, so firm, it actually hurts, and they look so angry that it’s scary too.  They are restraining you and glaring at you and all because your mouth wouldn’t obey your mind and said, “Yes” when you meant “no”.

I have no idea if this is what it’s like for my daughter or others who have what I call unreliable spoken language, but these are the kinds of scenarios I imagine and wonder about.  Is this what it’s like?  One day she will tell me, but in the meantime, there are others who are now writing about similar things, when their mind knows but their body is unable to do as their mind wants.  This is what Ido writes in his book, Ido in Autismland:

“… my mom asked me to hand her a bag.  I kept handing her a piece of paper the bag was near.”

“It happens less often now but it was common when I was small in my ABA drills.  I wanted to touch a card but my hand had another plan so I had to redo drills until my hand got it.  Not my head.  It knew everything.  My hand had to learn the drill. It’s something for the neurologists to study.  This is why so many parents think their kids don’t understand them.”

Naoki Higashida in his book, The Reason I Jump, writes:

“…as soon as I try to speak to someone my words just vanish.  Sure, sometimes I manage a few words, but even these can come out the complete opposite to what I want to say.”

What would that be like?  How would it feel to be completely misunderstood, your every action misinterpreted by someone else who believes you meant something that you did not?

Tracy Thresher types during a Q&A at the ICI Conference ~ July, 2013

Tracy Writes

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Posted in Autism, Autism Books, communication

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Non-Speaking With a Lot To Say

Posted on October 17, 2013 by | 44 comments

I am reading Ido in Autismland: Climbing out of Autism’s Prison by Ido Kedar.  This is another one of those MUST READ books.  Ido is a non-speaking Autistic teenager who learned to write his thoughts by pointing to a stencil board using Soma Mukhopadhyay‘s RPM method.  Ido now types on an iPad.  When I first received a copy of this book, I admit, I was put off by the subtitle.  You see, I was one of those people who once believed my daughter was trapped inside a prison that I called “autism” and for a long time I absolutely believed this.  This thinking led me to believe that if I could cure her, if I could remove her “autism” she would be released from its prison.  It was also this thinking that caused me to say how much I loved my daughter, but hated her autism.  Once I discovered blogs written by Autistic people I began to reassess these various beliefs and finally began to understand how my thinking was actually harming her.    I’ve written about some of this ‘here‘, ‘here‘ and ‘here‘.

But in reading Ido’s book and because I wrote directly to him and his mom about my initial reaction to the subtitle, I have come to understand that his reference to “prison” refers to being imprisoned in a body that does not obey what his mind wants, a mouth that does not say the words he wants to communicate and a society that perceives him as someone he is not.  But more importantly this is Ido’s story and is about the way he perceives autism as it relates to himself and what he has been through as a result. To not read this terrific book because of semantics or because Ido’s perception of autism as “illness” is one I found unhelpful and even harmful to my family and daughter, would mean I would have missed reading a great book written by a really insightful and wise young man who had to fight against prejudices and preconceived ideas about who and what he was capable of.  This is Ido’s story and what a wonderful story it is!

In the introduction, Tracy Kedar, Ido’s mother, writes,

“The ideas in this book challenge many assumptions long held by professionals working with autistic people.  In our own experience, Ido broke free in spite of, not because of, the mainstream thinking today.  If we had continued to rely on  the specialists and educators who dominated Ido’s early years, if he had not been able to find a way to show me that he could read and write, and if I had not finally trusted my own eyes and impressions, Ido would still be stuck as he was, locked internally, underestimated and hopeless.  It is time for our understanding of autism to undergo yet another paradigm shift, and Ido, along with other non-verbal autistic communicators, is a pivotal guide.”

*The use of bold is mine, used for emphasis and is not in the book.

Just as a quick aside, Soma’s RPM method begins with written choices, progresses to a stencil board with the student pointing to the desired letters with a pencil, then to a laminated alphabet board and eventually to an iPad and computer.  Soma or the person doing RPM does not come into physical contact with the student and once the student has moved to a laminated board, she even encourages the student to hold the board themselves.  The final step is to move from the laminated board to independently typing on an iPad or computer.

This quote was written by Ido in 2008 regarding his body and mind and how the two do not obey each other.

“Time after time people assume that I don’t understand simple words when they see me move wrong.  Understanding is not the problem.  It’s that my body finds its own route when my mind can’t find it.”

Again in 2008, Ido writes about his life before he learned to communicate using RPM.

“They misinterpreted my behavior often.  For example, I remember that during my ABA supervisions, I sometimes ran to the window over the parking lot in an attempt to show them that I wanted to go to my car.  They didn’t understand how a non-verbal person might be communicating.  Once, when I got really mad I urinated in my seat, but the supervisor just thought I couldn’t hold my bladder.

“But even worse was that they didn’t support me when I began to communicate.  Maybe they assumed I was too dumb, or they simply couldn’t see what I had learned because I learned it in a different way than their methods.  The response to everything was to give me drills.  If I had a dollar for every time I had to touch my nose, I’d be rich. I remember one day they realized that I hated being told to touch my nose, so they brilliantly switched the command to “touch your head.”  I felt like a prisoner of these theories and methods…”

“On Being Silent and Liberated from Silence”

“Can you imagine silence your entire life?  This silence includes writing, gestures, and non-verbal communication, so it is a total silence.  This is what a non-verbal autistic person deals with, forever.  Your hopes dim, yet you persevere in going to ABA or Floortime (play focused treatment for autism) or speech therapy, all to no avail.  The therapists can’t help and you despair, and only you know that your mind is intact.  This is a kind of hell, I am certain.

“The experts focused on stim management, or drills of rote activities, or silly play like finding things in Play Doh, over and over, on and on.  But they never taught me communication.  I shouted to them in my heart, “I need to communicate!”  They never listened to my plea.  It was silent.

“I could read from an early age.  I could write too, only my fingers were too clumsy to show it.  In school I sat through ABC tapes over and over and added 1+2=3 over and over.  It was a nightmare…”

Ido writes how when he was seven years old his mother supported his hand in an effort to have him help write invitations to his birthday party and how she could feel he was attempting to move his hand and in this way realized he could write.  But things did not immediately change.  No one believed him or his mother.

“My ABA team tried to convince my mom that she was wrong.  This hurt me so much because I thought they’d be happy for me and teach me how to communicate better.”

My daughter has asked that I read Ido’s book to her, so I am.  It has opened up a whole discussion about communication, what it means to not be given the tools to do so, what is autism, what it means to be autistic, being in a body that often does not do as one would like and what others believe as a result of actions you often have little if any control over.

Ido

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The Trouble with Treating “Behaviors”

Posted on October 16, 2013 by | 54 comments

A child throws a chair or their shoes at school and the parents are told of their child’s “problematic behavior”.  A child pokes another child repeatedly and when told not to, laughs and does it again.  The teacher tells the child they will not be able to go out to the playground at recess as punishment.  A child runs from the classroom, causing the teacher to stop her lesson and pursue the child.  The child is given a time out for displaying “challenging behavior”.  A child does not respond to the teacher, does the opposite of what is asked and the parent is informed that their child is “out of control” or “refuses to listen” or “is being disruptive” or any number of other comments that so many parents routinely receive from the various teachers and schools that our kids attend.

Each time it is the child’s behavior that is highlighted, documented, and charted.  Reward systems are put into place, time outs are given, the child is told there are consequences to their actions and things they love are taken away to demonstrate this point.  The thinking goes that behaviors must be treated.  But I question all of this because I’ve read too many stories that beautifully explained these so called behaviors by many people who spent a great deal of their childhood being misunderstood and told their behaviors were “out of control” or “challenging” or they needed to understand there are consequences when they were responding to other things in their environment.

Imagine you are on the school bus and another kid is seated directly behind you.  They scratch the back of your seat with their fingernails.  The sound of their scratching, coupled with the vibration caused by it, makes you feel as though your entire body was covered in crawling ants and the vibration makes you feel physically ill.  You do not have much spoke language that you can easily access and the language you do have is thought of as echolalia so it is often ignored.  Never-the-less you do the only thing you know to do, you shout, “No!  Stop doing that.  You cannot hit, you cannot punch, you cannot bite!”

The other kid thinks this hilarious and realizing you are directing this at them, continues to scratch the back of your seat, except now they are doing it with renewed vigor.  The bus matron comes over and tells you to stop yelling, that you are being disruptive and need to be quiet.  The kid behind you continues to scratch your chair, and despite your protests, despite your attempts to make him stop, he will not.  Eventually you turn around and spit at the kid.  The matron comes over, now furious and tells you that you must apologize and that she intends to tell your parents how badly you’ve been behaving.  So you spit at her too.

When the matron tells you that you will not be allowed back on the bus, something you love riding, you begin to cry and bite yourself.  Again you are yelled at, told to stop it immediately….  When you get home your parents tell you this kind of behavior is unacceptable and on it goes.  No one says a word about the boy who was making your bus ride miserable.  No one talks about his behavior or that there are consequences, in fact there appear to be no consequences to some people’s behavior, only yours.  The message you learn is that terrible things will happen to you, seemingly without reason, without any explanation and that you must be hyper vigilant and avoid sitting near any other kids.  The next time you board the bus you attempt to sit in the very last seat, but are told you cannot and are seated in front of the boy who delights in scratching your seat.

(The above story happened to someone I know well and it was only when I was able to type with this person that the whole story came out.)

A few months ago I read about a boy whose older brother would punch his friends on the shoulder upon seeing them.  They all smiled and laughed.  After much observation, the younger brother decided that this was a good thing to do, especially to someone you liked and wanted to be friends with.  So the next day when recess rolled around this boy went up to another kid and punched him in the shoulder.  Only the kid didn’t laugh or playfully punch him back.  Instead he yelled at him to stop hitting him, called a teacher over and the other boy was sent to the principal’s office.  The boy was told if he continued “picking fights” he would be expelled.

These examples are but two of dozens about so called “behaviors” that are seen as problematic and in need of various interventions to deal with them.  And yet, when one listens and asks non-scolding questions from a place of curiosity without threat of admonishment there is almost always a reason for these so-called “behaviors” and the reasons may illuminate why the various interventions to treat them will not work, or will work to make the person learn to camouflage or quell their behaviors, but will not help the person learn how to cope or deal with the things causing the “behaviors”.  Treating actions that are seen as problematic as though they occur in a vacuum is like applying a band-aid on a rash caused by allergies.  The band-aid might cover the rash from view, but it will do nothing to treat the cause.

It is interesting to note that there are people who consistently work with those who are known as having “problematic or challenging behaviors” and yet, all of those so-called behaviors disappear when they are treated with respect, presumed competent and they are not treated as though their actions are intentionally disruptive.

Soma Mukhopadhyay and Emma ~ September, 2013

Soma & Em copy

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I Will Not Model Compliance For My Child

Posted on October 10, 2013 by | 47 comments

“Look! Motorcycle bubbles!”  This was a phrase Emma used to say often.  It was an all-encompassing phrase that was both a metaphor for rain and the Fourth of July and New Years Eve fireworks, as well as a descriptive phrase of what both are like sensorily for her. (Emma has verified this is true.)  “Motorcycle bubbles” meant rain and fireworks, but there was so much more to those two words than simply pointing out the window and saying, “Look!  It’s raining!”  or “Look at the fireworks!”

When I went back through this blog to find the post I’d written about motorcycle bubbles, I found these, “Sorry Bubbles” and Em & The 4-Wheeler  written more than two years ago, that I’d completely forgotten about.  “Motorcycle bubbles” and her related phrase, “Sorry bubbles” are nothing short of poetic.  Poetry is all about using words in unusual, unexpected ways, “Sorry bubbles”  Great art evokes an emotional response within us.  While, a few years ago, I was appreciative of the beauty of phrases such as “sorry bubbles”, I was even aware of the emotional tug I felt when I heard her say those words, that appreciation was tempered by worry and concern about what I believed the larger issues were for my child who said such fascinating, yet cryptic, words.

I no longer feel the strain of worry and concern, but rather delight in my daughter’s obvious brilliance and poetic gifts.   I am grateful to have gotten to this place of appreciation and joy.  So many autism specialists and so-called treatments did not and do not appreciate the beauty of those word combinations.  So many believed they were aberrant, meaningless words that must be righted through rote learning and repetition of more “appropriate” words.  Which was code for “use these conventional words, so that we can understand you more easily.   Make our lives easier.  Behave in ways that do not draw attention to you.  Be like everyone else.”  And all of this was done under the guise of “helping”.  Meanwhile “motorcycle bubbles” and the like would be bulldozed, covered with the dirt of more conventional language.

People argue that our children need to learn to “fit in” that it is our job to teach them these skills and to not do so is to be negligent or (at the very least) unrealistic about life and the world.  But for those like my daughter, asking her to spend so much of her energy and time to try to change the way she moves (were that even in the realm of possibilities), forcing her to give up her string (which marks her as different), trying to get her to substitute her string for a more “socially acceptable” object, teaching her to swallow her verbal utterances that to others seem nonsensical, forcing her, every time she said anything, to repeat a more conventional way of speaking, even if all of this were remotely possible, I ask WHY?

Why would we do this?  Why is all of that more important than giving her the freedom, support and encouragement to be her unique and beautiful self?  Why is quelling her natural tendencies so desirable?  Why is tamping down her poetic phrases, replacing them with more standard, “accepted” speech preferable?  Why is all of this considered desirable given the massive toll all of that takes on her?  Even if she could do any of these things, even if all of it were obtainable goals, how exhausting, how bone-numbingly frightening, how terrifyingly isolating it would be to grow up believing that everything about you was fundamentally wrong.

I’m not interested in grooming my child to be something she is not, demanding that she be someone, that even if it were possible for her to attempt, would make her feel awful about herself, just so society could feel better about its own mediocrity.  I’m not willing to do that.  The only thing I care about, the only thing I’m interested in, is changing society’s views and the only way that’s going to happen is by countering what is considered the “norm” and saying, NO!  I’m not going along with it.  NO!  I am not going to raise my child to be compliant or train her to say what you want to hear or try to force her to move in ways that society has deemed acceptable.  I will not model compliance for my child to imitate.  I do not condone censorship that would bury “motorcycle bubbles” and “sorry bubbles” forever.

(Chou Chou – This photo’s for you!)
Love copy

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The Blurring of Diagnoses

Posted on October 9, 2013 by | 32 comments

There was a time in my life when I could not get through an entire day without throwing up.  I would get hungry, eat to the point of discomfort and vomit.  I went to therapists who tried to help me.  I tried various techniques, stalling methods, eliminating certain foods, but in the end nothing I did helped.  I couldn’t stop.  I remember sitting in my apartment, afraid to eat anything because to eat meant I would purge.  It was no longer a choice.  It was something I had to do.  All of this was complicated by body image issues, tremendous shame and the belief that who I was depended on how thin I was.  That I was dying inside seemed less important than how I looked.

“One major distinction between an addiction and a compulsion (as it is experienced in obsessive-compulsive disorder) is the experience of pleasure. While people who have addictions suffer all manner of discomforts, the desire to use the substance or engage in the behavior is based on the expectation that it will be pleasurable.

“In contrast, someone who experiences a compulsion as part of obsessive-compulsive disorder may not get any pleasure from the behavior he carries out. Often, it is a way of dealing with the obsessive part of the disorder, resulting in a feeling of relief.”  ~ About.com

When I read a description such as this one, I begin to question my eating disorder as addiction and wonder whether it was much closer to the definition for OCD  because though it all began with a desire to quell pain and seeking pleasure, by the time I found recovery, pleasure was illusive and no longer part of the equation.  “This can get a little confusing because there often comes a point for people with addictions where they don’t really enjoy the addictive behavior, and they are just seeking relief from the urge to use or engage in the behavior.”

“Although this can look like obsessive-compulsive behavior because the pleasure is gone, the original motivation to engage in the behavior was to feel good.”  ~ Helpguide.org.   So we have come full circle and are back to addiction.

I bring all of this up because as with anything whether we are talking about addiction, OCD,  anxiety or any of the other numerous issues many people struggle with, the labels can overlap.  So I was an active addict and when I was active, my addictive behavior mimicked pretty classic OCD behavior.  There was a point when the idea of sitting with my feelings, sitting and not tamping them down with food was inconceivable to me.  I really believed I would die.  This statement describes OCD almost exactly.  “OCD… characterized by uncontrollable, unwanted thoughts and repetitive, ritualized behaviors you feel compelled to perform.” ~ Helpguide.org

And yet, even though OCD looks a lot like addiction, there are differences.  Differences that make helping someone with one or the other tricky, but understanding the differences is important.  For example the two most common forms of treatment for OCD is cognitive-behavioral therapy and medication, though neither have proven to be entirely successful and often it is said that OCD, like addiction is something one must learn to manage for the rest of ones life, these treatments flourish.  Treatment options for addiction have proven to be equally challenging.  Some people have found help in working a 12-step program, but others have not.

“While the onset of obsessive-compulsive disorder usually occurs during adolescence or young adulthood, younger children sometimes have symptoms that look like OCD. However, the symptoms of other disorders, such as ADD, autism, and Tourette’s syndrome, can also look like obsessive-compulsive disorder, so a thorough medical and psychological exam is essential before any diagnosis is made.” ~ Helpguide.org

Someone whose neurology is autistic may have OCD AND a whole host of other things too, similar to the non autistic population.  Because there is so often an overlap, people mistakenly think that autism is the same as OCD or assume that ALL Autistic children and people have OCD.  The lines between the two become blurred and the distinctions get lost.  So much of what people believe IS autism, are actually co-morbids.  Without making the distinction between what is and isn’t “autism” we may be treating something that we should not be or are missing what we could treat, but aren’t.

Autistic neurology, like non autistic neurology needs to be separated from the co-morbids that affect some, but not all people.  Just as I am non autistic AND an (not active) addict, no one would leap to the conclusion that because I am both, ALL non autistic people are also addicts or that addiction is the same as being non autistic.  Yet, we see this kind of thinking over and over with autism and Autistic people.

Em on her pogo stick copy

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Internalizing What Others Believe

Posted on October 8, 2013 by | 36 comments

When I was growing up my sister was the “athletic one” and as a result for a very long time I believed I was not athletic.  It wasn’t until I started dating a man who had almost no athletic abilities at all that I began to suspect this version of myself was false.  It wasn’t that I wasn’t athletic, but more that in comparison to my sister, I wasn’t.  These kinds of internalized beliefs about ourselves begin young.  I have yet to meet anyone who did not take on some belief about themselves that had nothing to do with who they actually are, but instead was what others said or believed about them when they were young.

With autism there is a whole population of children who are growing up with assumptions about their neurology that will be very difficult for them to reject.  When a two-year old is diagnosed and overhears their family, doctors, therapists, and friends speak about them as neurologically inferior it will be difficult for them to not take that on as fact.  If they act out in frustration, because what they know and what they are able to say do not match, their frustration is labeled as “challenging behavior”, they are thought to be manipulative or difficult or misbehaving.  If they are then punished for these behaviors, the actions they take because their bodies do not do what their minds are telling them to do, or because they are bored out of their minds from being asked to do the same thing over and over, as they grow older and continue to have picture books given to them when they are intellectually capable of far more, I imagine it must only make this perceived belief about themselves all the more painful.

Society has adopted the medical model for autism.  It is a neurology seen as deficient when compared to non autistic neurology.  It is pathologized because to not do so would mean insurance companies would refuse to help pay for certain therapies that can be very helpful.  Things like OT and PT, and  in some cases, speech therapy etc would all be deemed unnecessary.  But I have to wonder whether there isn’t a better way.  After all the cost our children and the Autistic population is having to pay is pretty steep.  Their self-esteem is often battered, their internalized view of themselves is negatively affected, ask just about any Autistic adult about their childhood and what they believed about themselves as a direct result of what was said to/about them, even if not in their family of origin, but at school, by other kids, or the doctors they were taken to.

Many talk about how autistic children are trapped and imprisoned by their autism.  A few Autistic people have written about how they lived in their own world until they were given the support to communicate.  Some have even said they felt imprisoned and trapped by their autism.  The image of autism as a prison, is a strong visual image, one that a number of autism organizations have used with great success in drumming up donations and funding.  When I read things like that, written by Autistics, it is painful to read.  Understandable, but painful.  The internalized view of themselves as imprisoned by autism is what others and society has said.  But if autism was better understood, if all children were immediately given the help they need to communicate in ways the non autistic population could understand, much of these views would disappear.  For a long time I bought into these beliefs, too.  But I have come to understand that it is not autism that imprisons my daughter, but society’s beliefs and inability to accommodate her that does.

Em’s new guitar

Guitar copy

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Posted in Autism, disability, Parenting

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“Look At Me”

Posted on October 4, 2013 by | 33 comments

When I was young, my father would call my siblings and me into his home based “office” when we had done something wrong.  We knew when we were summoned that we were in trouble.  I can still remember, now more than four decades later, the feeling of dread when my father would call my name.  I still remember standing before him, terrified, often angry and defiant, while he spoke to me, describing whatever it was that I’d done wrong.  And I can still remember those dreaded words, “Look at me when I’m speaking to you!”  The tone was not an invitation, but a demand, a demand for compliance, a demand for respect that I did not feel, a demand to do as I was being told.  And so I did.  I would pick a point near his eyes, without actually looking at him, sometimes it was at one of his large eyebrows, or maybe a single hair that grew from his ear, or the bridge of his nose, anywhere but into those steely blue, angry eyes.  Those eyes that when I looked into them expressed pain and anger and contempt beyond anything words could convey.  It was physically painful to look into his eyes.  It was deeply, soul-wrenchingly, painful.  It tugged at the core of my being and threatened to annihilate me.  I learned, early on, to do anything BUT look him in the eye.

For years I’d forgotten about those moments of horror when I would get called into his office.  And then I gave birth to a beautiful child.  A child who would be diagnosed with autism and suddenly those awful words would be repeated by a great many and I felt that same terror all over again.  But now people who knew about autism, professionals, people who devoted their lives to working with children on the spectrum were telling me of the importance of eye contact and oddly I found a way to compartmentalize my past, after all I am not Autistic, therefore my experience must not be relevant or similar to someone who is.  And anyway, I only had trouble making eye contact in this one specific instance, it was unrelated.

I was told autistic children must be taught to look at those who are speaking to them because it was important they learn to “fit in”, and that this was what people expect and that those who do not learn to make eye contact will be thought suspicious.  So I nodded my head and proceeded to demand that my child “look at me.”  And then I read a post from an autistic person who wrote of how physically and emotionally painful it was to be told they must do this thing that hurt them.  She said it was like looking into the depths of the other person’s soul and that often the pain she saw there was too overwhelming.  And I identified.  I understood what she meant.  I had felt that way with this one person, my father, and it was exactly as she described and it made me stop and think about what I was asking of my child.

You see, I had only had this experience with one person, it was not universal, but her description reminded me of that pain I’d felt so long ago and I began to wonder, what if that experience that I had with one person was how it felt with everyone whose gaze I met?  What would that be like?  I knew then that it would be horrible to have those words said, over and over by so many, and I vowed to stop demanding this of my child.  Whatever this might cost her in the long run, whatever others might conclude about her because she did not learn to “look” at others in their eyes, I decided it was worth it.  I did not and do not want her to ever feel that terrible feeling of sadness, of pain, of overwhelm or whatever it was that made her avert her gaze to begin with.

Interestingly, my daughter often makes eye contact, though I do not for a moment believe this has anything to do with me or anything I did or didn’t do one way or the other.  In fact my daughter wrote she likes looking at people’s eyes.  So much so that we have agreed to work on a project based on this together.  But for all who do not, who are overwhelmed, who feel physically ill or in pain, why would we demand this of them?

Eye Contact

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Posted in Autism, diagnosis, eye contact, Parenting

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The Problem with “Use Your Words”

Posted on October 2, 2013 by | 68 comments

How many of us have uttered those three words to our kids?

Use your words!

And yet, if your child is like mine, they probably do use words.  Perhaps they “script”, words we dismiss because we recognize them from a movie, or perhaps we hear the tone and recognize it as echolalia and therefore  ignore.  Maybe we think of the words as a verbal stim or maybe we hear that those words come from a teacher, the bus driver, another kid, a friend, us…  and again we dismiss them as meaningless.  But what if we are wrong?  What if all those words our kids are nobly attempting to use ARE communicating something, but it is US who cannot make the connection?  What if our kids do not learn language as we think of language being learned, but they are learning it, in their own way, on their own timeline?  What if all those words they keep using, the ones we are told to ignore or not reinforce by acknowledging, are HOW they are learning to speak?

I am currently reading Marge Blanc’s book, Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language
and these are but a few of the questions being answered.  One thing I have not yet seen or can find in this terrific book is any mention of Tourette’s.  I am curious to know the authors opinion on how Tourette’s factors into language acquisition or if it even does.  Marge, if you’re reading this, I’m hoping you’ll comment!

In those early, blurred years after Emma’s diagnosis I remember thinking that any language was good language.  And then my daughter began to say things, things I could not and did not understand and I was told, those are meaningless words, you must ignore them, you must not reinforce them.  But maybe, just maybe those words are the foundation for others that I and others will be able to understand at some point.  My friend Ibby, of the fabulous blog, Tiny Grace Notes, told me more than a year ago about the importance of not trying to do a word for word translation of the things my daughter said, but rather to lean into the words.  I couldn’t fully understand what she was telling me at the time, but slowly I have begun to.

Marge Blanc writes, “As we valiantly try to replace our kids’ echolalia, their natural language, we feel validated when they learn to say new things.  We teach our kids a dozen functional phrases and sentences and feel satisfied that we have taught “functional speech.”  The tragedy is that while IEP goals are met, children’s linguistic potential has been ignored – and undermined.  We have forgotten how to assess a child’s developmental language level and his capacity to develop generative language.  And we have also failed to consider that the functional phrases we’ve taught might actually interfere with his potential to develop language competence.  And in the process, the echolalia doesn’t go away.”

Now add to this idea the way we are taught to ignore those scripts, that we mustn’t give them any air to breathe as we will only encourage the proliferation of similar non “language.”  So we smile patiently and nod our heads and say…

Use your words.

But not those words.  Use these words.  The words I want to hear.  The words I am now going to repeat and have you say over and over with the hope that you will say these words, my words, in place of yours.  Isn’t that really what we mean when we say “use your words”?  Use words I want to hear.  Use words I give you, but don’t, please don’t use YOUR words.

Over a year ago I wrote about how Emma advocated for herself on the school bus.  You can read that post ‘here‘.  What I didn’t spend a great deal of time talking about was how she tried, repeatedly to “use her words” but was not listened to because they did not believe she understood what she was saying.  It was only after many attempts of using the only words she knew, “you’re going the wrong way!”  “Emma goes to a different school!”  and “you have to go this way!” that she began to scream and then bite herself and eventually punch herself in the face.  Even then, when she fell to the floor of the bus, refusing to get off, crying and hurting herself, even then they continued to not listen to the words she was saying and using and insisted she get off the bus.  It was only when one of the staff at her old school heard her and recognized her and thought to tell the driver that yes, she was correct and no longer went to this school, that she was on the wrong bus, it was only then that they dialed my number and told me my daughter was refusing to go to school, and as it turns out, rightfully so.  They had taken her to the wrong school.

When they brought her home she was devastated.  I will never forget the look on her face as she descended the steps of that bus.  Before her feet hit the ground I said, “You are so awesome Emma!  You told them this wasn’t your bus.   You told them they were going the wrong way!  I am so proud of you!”  Emma still talks about that morning, that morning over a year ago when she was “using her words” and no one listened.

Use your words.

Waiting for the school bus ~ October 2, 2013
*Em copy

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Posted in Autism, language, Parenting

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“Be Nice To Each Other”

Posted on September 30, 2013 by | 46 comments

“Be nice to each other” – this was the final sentence Emma wrote to Soma on Friday before we flew back home.  She wrote it in answer to Soma’s question, “Any message to the world?  To mankind?”

Be nice to each other.

We returned home late Friday night.  I was riding on a cloud of excitement, newly found realizations, solid, unequivocal confirmation and proof that not only is Emma completely aware of her surroundings, but she has profoundly wise insights into the world, other people and herself.  She is one brilliant girl.  She has managed to learn despite having almost no formal education, she knows her multiplication tables as though she’d been studying them for years.  She knows how to solve mathematical word problems, she understands things I have only come to understand very recently and her compassion for others is astonishing.  She has been spoken harshly about.  She has heard what others have said about her in front of her as though she could not hear or understand.  She knows what others think of her, and yet, she understands these things are said in ignorance.

So excited was I, that I slept fitfully, and Saturday morning awoke to blinding, crushing, devastating sadness.  I felt the weight, the enormity of my daughter’s life and my role in all that has happened to her these past nine years since she was diagnosed.  My mind latched on to each and every misstep, the mistakes piled up so quickly, one on top of the other I felt I couldn’t breathe.  I spent Saturday in a state of crisis.  I completely broke down.  And the thought that continued to blast in my mind was, “How will I ever find my way out?  How can I forgive myself for what I’ve done?  How does one forgive another who has made the decisions I’ve made?  In essence, how can you forgive what is unforgivable? And yet, she has.  And therefore, so must I.

Be nice to each other.

And here is the thing about all of this.  Berating myself, hating myself, NOT forgiving myself allows me to continue the cycle.  It wears me down, threatens to break me when I need to be strong.  But I also know that when I am overwhelmed with feelings, telling myself that I must not feel the things I am feeling, does not make them go away.  Tamping the feelings down, pretending they do not exist, none of that actually helps me move through them.  Criticizing myself for hating myself does not make me hate any less.  And so I accepted that this was where I was.  And for one day I sat with all those awful, painful feelings and felt them.  Neither pushing them away or adding to them by criticizing myself for having them.  I sat with them one excruciating hour after the next and allowed them to be.  And all the while I repeated Emma’s words, Be nice to each other. And I allowed that to include myself.  By Sunday morning I felt my strength returning.  I felt that old determination returning.  I could feel energy flowing and I knew.  I knew.  As long as Emma gives me permission to, I will tell all who will listen, at least some of what she is writing.

When I asked Emma yesterday if I could write today’s post using her words as the title she nodded her head, yes, and smiled.  Last night before going to sleep she said, “Mommy?  No school tomorrow?  I don’t like new school.”  And so I promised her, I promised I would do everything in my power to help her school understand, but I know I have one hell of a battle before me.  And I need every ounce of strength I’ve got in me.  But maybe, just maybe some of the video clips I have of Emma writing these things will have the power to change even a few minds so that they will be swayed and will come to understand what I have.  Not only is my daughter capable, she has a great deal to teach us, but all of that will be lost if we are not willing to open our minds and listen.  This is the non autistic limitation of our neurology.  This is our neurological deficit and we will have to work mightily to change that.

Emma at Halo – September 26th, 2013

Em iPad copy

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Posted in Autism, Parenting, Soma Mukhopadhyay

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My Star: Emma

Posted on September 27, 2013 by | 16 comments

Rhyming words, poetry, fables, history, science, multiplication, math word problems…  these are the things Soma has covered with Emma over the last three days.  Emma went from pointing to one letter at a time, to writing out several words and even whole sentences describing profound thoughts, insights, doubts and concerns, and I sat there witnessing this outpouring of words, this torrent of letters that, when added up, evoked emotion and identification and concern and understanding.  The power of language.  The power of communication.  There is tremendous power in both.

This has been a profound few days; transformative, exhilarating and exhausting.  I have watched my daughter work and she has worked very, very hard.  I have watched her and I have marveled at her and been dismayed by her and astonished with her.  I have laughed and wept and listened and listened and listened some more.  She has said things that have provoked more questions than answers, but she is here, very much rooted in this world and not, as many suggest or seem to think, somewhere else, off in her own “little world”.

I cannot write about anything specific this morning, I’m too tired and Emma has said she is too.  We have two more sessions today with Soma and then we head home.  We are lucky.  We are incredibly fortunate that we’ve had the means to do this, to come here, to stay for the week so that Emma could work with Soma.  All the young children Soma has worked with over the years, so many of them are now writing books, and are at an age where they are publishing their hard-won  words; there are too many to ignore.  They are communicating on letter boards and iPads and keyboards, an unbelievable output of thoughts, ideas and opinions.  “I want to be able to talk,” Emma wrote yesterday.  And maybe, just maybe one day she will be able to talk the way she writes, but until then we will keep providing her with every available resource we can find so that she has a better chance of achieving that goal.

Em standing beneath the “Star of Texas”

Em & Star of Texas copy

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Posted in Autism, communication, Soma Mukhopadhyay

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“I Want to Know What God Thinks About Autism”

Posted on September 26, 2013 by | 52 comments

*Emma approved this post before I published it.

Yesterday was our second day working with Soma.  And just when I thought I could not be more blown away by anything Emma wrote, she wrote the title to this post.  It was in response to a conversation about Mesopotamia, ancient civilizations, buildings and building materials, which led to Soma discussing the types of structures built, one being temples.  Soma asked Emma why people would go into a temple, to which Emma wrote, “pray”.  Soma then asked her if she went into a temple what would she pray about.  Emma then wrote, “I want to know what god thinks about autism.”  

I have to interrupt this to say, I am not a believer.  I had a moment, a very brief moment in my teens and again in my thirties when I so wanted to believe, I needed to believe and yet still could not really believe in any way that made sense to me.  God is not something I obtain any solace or strength from believing in, and well… truthfully, I’ve stopped trying.  I don’t need to believe.  Having said that, my husband and I talk about god, religion, spirituality, the practice of acceptance and staying present, meditation, doing the right thing, and what a power greater than ourselves means on any given day.  So there is a fair amount of “god-like” talk going on.  In addition, my mother is a theologian and has taught bible study classes for many decades.  She used to attend a Torah study and I believe does again now.  She is one of the most knowledgable and interesting people I know of to talk to about religion and god.

The point is, Emma has certainly been present to a great many conversations about god, the bible and religion.  But never has she said the word “god” let alone, used the word in a sentence.  And it must be said, we never thought to ask her…   When both children were still very young I bought a number of children’s books on a variety of religions, and made some general statement about the importance of learning and deciding for yourself what you believe.  We still have those books; I’ve never seen Emma look at them, but that doesn’t mean she hasn’t.  And anyway, as I said, it’s not as though she hasn’t heard a great deal of talk about God.

Later I asked Emma if she believed in God and she wrote simply, “yes”.

If there is a god, I’d like to know what god thinks about autism, too.  I’m guessing here, but I should think god is embracing and celebrating all neurologies.  After all, most people I know who believe in the existence of god believe that god created us the same and equal and beautiful beings, given the gift of choice.  We can choose to act with love, compassion and kindness or we can choose to behave in hurtful ways that cause tremendous pain and suffering.  Either way, according to those I trust and respect on the topic, God is always there for us, all of us, all the time, and without exception.

Em Texas

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Posted in Autism, God, Parenting

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The Conversation That Isn’t

Posted on September 23, 2013 by | 39 comments

The biggest problem with the conversation regarding autism and Autistic people is that it is largely had without the inclusion of those who are being discussed.  When Autistic people attempt to join the conversation they are often told – the very fact you can speak removes you from the conversation because you are not representative of those who cannot and those who cannot speak are believed to have little if nothing to say.

When someone who is Autistic and does not speak, types to communicate, they are often discounted as not really being able to type, even when they are able to do so independently.  One of the many google search terms that come up repeatedly, leading people to this blog is “Carly Fleischmann fake.”  I continue to find people’s adamant disbelief, even when shown clear evidence of ability, baffling.    For those who do not know who Carly Fleischmann is, please go to her website and Facebook page.  She is a non speaking Autistic teenager who defies all the stereotypes about what it means to be non speaking and Autistic.  People insist that she is an anomaly, but go to a conference like TASH, Autcom, the ICI Conference or go to the resources page on this blog and read the many blogs and written works by non speaking Autistic people and you will quickly see that not only is Carly not a “fake” or a “hoax”, she is not an anomaly; she is in good company and one of many.

“…. a tendency among professionals to band together when their expertise is challenged and to deny resolutely the existence of evidence which, if admitted, would force a reevaluation of established practice.” ~ Speechless by Rosemary Crossley

Rosemary Crossley on the topic of IQ tests, writes, “Tests of intelligence purport to assess how well you take information in, and what you are able to do with it, on the basis of what comes out.  If nothing quantifiable comes out you are untestable.”  She then goes on to say, “What is surprising is that the results are assumed to reflect what the child and teenager are thinking and what they are able to learn, and are used as a basis of making decisions about their futures.”

So we continue to have a conversation about Autistic people, yet when those who can speak do so, they are discounted as not representative of those who cannot, and when those who cannot speak, type, they are doubted, believed to be a hoax or an anomaly and not representative of others who share their inability to speak.

Does anyone else see a problem with all of this?  Anyone?

Me and Em at the ICI Conference in July, 2013

Me & Em

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Language Acquisition?

Posted on September 20, 2013 by | 44 comments

Yesterday I wrote about some of the problems inherent in asking children to read out loud.  You can read that post ‘here‘.  The comments have been uniformly terrific, extremely informative, and very helpful.  Ischemgeek wrote several comments that I’ve actually printed out and even copied and pasted into emails to a few teachers I know.  She wrote a terrific explanation and series of suggestions in answer to a question I posed asking for her thoughts regarding handwriting.  My question to her was slightly off topic from the original post, but if you read the comments you’ll see how the conversation evolved.

Another comment, from bjforshaw, reminded me of how when Emma was a baby she seemed to acquire two or even three word phrases (“chase me”, “go out”, “all done”, “play catch” “I donwannta”)  as opposed to individual words.  Bjforshaw wrote, “I dislike reading aloud because it is so different from the way I normally read and this makes it feel uncomfortable. My usual reading speed is fast, much faster than my speech, and I scan phrases, groups of words, even whole sentences. In contrast when I read aloud I have to plod along one word at a time.”

When I read his comment I had one of those “light bulb” moments.  You know, where you think – wow!  This reminds me of this other, seemingly unrelated thing, I wonder if there’s a relationship?  So I went to the internet to see if I could find any articles on the topic of language acquisition, but haven’t found any dealing with babies learning whole phrases and chunks of words at a time.  Not only have I not been able to find any articles written on this topic, but I cannot find many articles written about language acquisition and autism, specifically, that aren’t more than ten years old, which I find baffling. If anyone has relevant links, please send.

I have no idea if, for some, language learning is similar to the way bjforshaw describes his ability to read, but I’m curious now.  Could it be similar?  Has anyone heard or read anything about this?  For those of you who read in chunks and not the individual word, do you know or remember whether you also learned to speak this way?  In other words instead of learning one word and then building upon that word, did you learn a phrase or several words together?  Could this also then be related to scripts? I’m thinking out loud here, but I’m wondering if scripts are meaningful because they are learned chunks of language that come to represent more than the literal interpretation given by those listening. Do the scripts carry more (hidden) meanings to the person saying them?

Thanks again to all who have commented, and to those who intend to, thank you in advance.

Em types for an audience in Tampa, April 2013Em types with Pascal

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Posted in Autism, language, Parenting

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The Pitfalls of Reading Out Loud

Posted on September 19, 2013 by | 89 comments

When Rosemary Crossley was here she spent several hours working with my daughter.  One of the many discoveries we made was that Emma can and does read very quickly, but if asked to read out loud, she will stumble and get so caught up in pronunciation I question whether she is able to comprehend what she’s reading at all.  I know I have trouble following the story.  Yet most schools ask children to read out loud, both as a way to assess what they are capable of, and also to make sure they are at the correct reading level.  If a child reads a first grade reader out loud with great difficulty, the impulse is to make the reading material simpler.  Except that if this is done with my daughter she will be stuck reading kindergarten and beginning level reading books for the foreseeable future.

I know Emma is able to read much more complicated texts than beginning readers.  I know this because I have seen her read with Rosemary and me very quickly.  I have witnessed her ability to read, not only faster than I can, but her ability to accurately answer multiple choice questions related to the text with ease when  given some resistance.  In other words, if she is asked to wait a beat, instead of being allowed to immediately point to an answer, her accuracy goes way up.  Without the pause she is just as likely to randomly pick any answer.  From Rosemary Crossley’s book, Speechless, “The resistance I provided slowed her down very substantially, and the quality of her output increased as her speed fell.  I gave Jan a picture of a cow and asked her to write me a sentence about it.  Instead she typed, THIS TYPING IS HARD.  I HAVE TO THINK.  That was, of course, the aim of the exercise.”

This idea of providing resistance is a tricky one to explain to people.  I have had some people say they just cannot understand why this would be necessary.  The only way I know of to better explain, is by comparing it to the way many, who are like my daughter, will perseverate on a word, or will rely on favorite scripts.  It is not that these scripts have no meaning, it is more that they are often difficult for others to understand.  If I hand Emma her iPad and ask her to type me a story, she will most likely write something like, “rollercoaster, kiteflyer, greenride, hurricane harbor, waterslide” which is also in keeping with what she might say out loud.

These words are powerful to her, they hold a great deal of meaning, but to most people, they are seen as gibberish.  If this then is used to assess her capabilities she will not be well served.  However if I ask her to type me a story and then hold one end of a rod while she holds the other end with her typing hand and types with one finger while I pull her hand back after each letter is typed, she might type, ““One day there was a boy called george. He had been in afight can’t tell you how he got into the fight but he was bruised all over.  He fought a lot and his teacher was very angry.  The next day he was all purple and his mother said you can’t go to school looking like that.  The very clever boy covered himself in flower and his teacher thought he was sick and sent him home.  The end.”  

Incidentally, that story is one Emma wrote when Rosemary was here working with her and is typical of the sorts of things she can and does type when given the kind of resistance I’ve described.  (You can read the entire post I wrote about her session with Rosie, ‘here‘.)  However, ask Emma to read out loud a story similar to the one she typed and she will have a great deal of trouble.  What she is capable of is far greater than what one might assume from what she verbalizes, whether that means reading out loud or with spontaneous speech.  Ask Emma to sing the lyrics of a song, in Greek no less, and she will get much of it right, but that’s a whole other post.

But how does one convince others that this is so?  Particularly when many are trained and told that reading out loud is a good indicator of ability.  There is surprisingly little written on the topic of the problems with reading out loud for those who have spoken language and word retrieval issues.  Again, in Rosemary Crossley’s book, Speechless, she writes, “her reading aloud was bedeviled by the same word-finding problems which affected her spontaneous speech, preventing her reading with any fluency.”

Obviously there needs to be more written about all of this.  The closest I have found, other than Rosemary’s book, Speechless, is a blog, The Right Side of Normal,  that concentrates on “right brained children”.  And on that blog, this post specifically, Silent Reading versus Reading Aloud, which deals with, at least some of what I’m discussing here. If others know of other resources discussing any of this, please do leave me links in the comments section.

Rosemarie Crossley

Rosie

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Posted in Autism, Parenting, reading

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