Category Archives: diagnosis

A Traffic Jam and an Analogy

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

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

Pause.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Soma and Emma ~ June 12, 2014

Soma and Emma ~ June 12, 2014

Separation Anxiety

In our ongoing “spring cleaning” (which never seems to end) I came upon a large spiral notebook filled with notes from the dozen or so ABA therapists who came to our home beginning in November, 2004 through August, 2005.  Emma was just two years old when all of this began.  It’s a fascinating document of that time period and it depresses me to no end.  Over and over the notations remark upon Emma’s “clingy-ness to Mom”, her “whimpering” and “despondency” when I would leave the room and her internal discomfort.

It is impossible for me to read the notes and not see an obvious pattern.  For a therapy that prides itself in collecting data, it is curious that this larger and, what seemed to me anyway, obvious pattern was largely ignored or, perhaps it is what naturally happens when we pathologize a neurology.  Emma’s desire to seek comfort and assurance from me, her mom, was seen as a negative, something to be trained away, something that was getting in the way of more important things.  It is ironic that this was being said about a young child who was diagnosed with autism, which has, according to all those experts, as one of its most defining characteristics, “social impairment” and an inability to form close bonds.

A two-year old not wanting to go off with a stranger is considered a “good” thing by most people.  That this same child would prefer being with their mother, even after getting to know someone else, would still, in most instances, be thought of as an excellent example of bonding and having a close relationship with one of the most important people in that person’s life – their mother.  After all, if you cannot trust your mother to protect you, to be there for you when you are two, how will you learn to trust anyone later in life?

Richard and I talk about “what we would have done” all the time.  Not as in – what would we have done if we could do it all over again – as much as, what would we do now if we had a two-year old today who was just like Emma.  And the first thing, the absolute first thing would have been PRESUME COMPETENCE.  That is the key, the foundation by which everything else would have been gauged.  This does not mean expecting a two-year old to understand, know and behave as a twenty year old.  It means we would have presumed she understood and felt what a two-year old is capable of understanding and feeling not less.

When Emma began her ABA based preschool in the fall of 2005, I was told to drop her off and immediately leave.  Yet when my non autistic son went to preschool they had a three-week “transition period’ in place where parents routinely stayed with their child, slowly reducing the time they stayed until eventually the child separated from their parent when they felt comfortable to do so.  Each child was different.  Some children ran off within the first few days, others needed more time, some needed several weeks, but no one said, “Leave now, even though your child is hysterically crying and clinging to your leg, it will be good for them.”  I remember asking about this at Emma’s preschool and being told they didn’t allow parents to stay with their child as this only prolonged the child’s suffering.  How is it that one method is good for one child, but not another?

Knowing how sensitive my daughter is and was, knowing how intensely painful this must have been for her, I can only sit here, filled with sadness that we just didn’t know better.  It was as though, when we got her diagnosis, all common sense left us.

So I am asking all my Autistic friends – What would have helped you when you were a small child?  Would it have been helpful to have your parent stay with you until you were comfortable and felt safe enough to go off on your own?  Would you have liked knowing your parent was there, even if you didn’t need to be right next to them?  What do you advise parents new to all of this?

OT session ~ 2005

OT session ~ 2005

“Look At Me”

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

Autism “Experts”

Yesterday Emma asked Richard a question.  It was a question she’d never asked before.  It was a question that made us both inwardly gasp and later discuss at length.  It was one of those things that was noteworthy and made us both rejoice.  It was an example of progress, not just Emma’s, but as I’ll explain, our’s too.  Emma’s reaction to Richard crying out when our impish kitty, Merlin leapt onto his back, was what one might expect, except it wasn’t.  As all four paws, claws extended made contact with Richard’s flesh, Richard howled out in considerable pain.  Emma ran into our bedroom and asked, “What happened Daddy?”

Had we been in the midst of some “therapy” or “treatment” protocol, as we almost always were a few years back, we would have attributed this new, never-before-heard question to that therapy or treatment.  We would have felt a wave of euphoria, believing, even if only briefly, that this new treatment or therapy could be credited for her voicing such a question.  We would have remarked to each other that this was proof and only later, perhaps the following day or day after that, we might have questioned our conclusions.  We might have discussed any other significant thing that might have occurred or we might have waited with guarded excitement for the “next” wonderful thing that would prove to us, once and for all, without a doubt that this thing we were doing was making a difference.  As though our daughter would otherwise stagnate without our constant tinkering.  As though she would not make any “progress” without our various interventions.  As though autism meant complete stagnation and no movement of any kind.

Since we no longer adhere to this line of thinking, we simply spoke of what we’d just witnessed with joy, while shaking our heads at how fabulous it was that we are making progress along side our wonderful daughter.  And as we mutually applauded ourselves for the headway we’ve made, we attributed all of it, her question and our reaction, to what it was – life, maturity, learning, growth and the fact that we humans have a tendency to change and progress and how wonderful is that?!

No one told us this seemingly obvious fact when Em was first diagnosed.  No one told us this, probably because no one thought it necessary to.  Except that in my case anyway, it was necessary.  It was more than necessary.  It was required.  Because with all the misinformation we received upon Emma’s diagnosis, one of the implications was that massive amounts of intervention, forced interaction and jumping through a million hoops was more than necessary, it was required if we wanted to see any “progress.”  It was suggested that if we didn’t do all these things, we might as well resign ourselves to the idea that our child would never move beyond where she currently was.

“I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The “wait and see” approach is detrimental to your child.” ~  Lynn Koegel and Claire LaZebnik

It should be noted, “Every expert” who is NOT Autistic, may believe this, though I’d argue with the word “every.”  It wasn’t until I began reading blogs written by Autistic people and talking with my Autistic friends, that I started to seriously question this idea.  I also began questioning the whole idea of what “progress” really meant, but that will have to be tackled in another post.  It wasn’t until I began questioning the idea, that I then began also questioning who exactly were these people calling themselves “experts” and how none of them were Autistic, nor did they seem particularly interested in hearing what Autistic people were saying.  Do any of you find it curious that so many of these so-called “experts” do not seem to personally know any Autistic people outside of a clinical setting?  The very people they say they are experts on?  Don’t you find that odd?

Can you imagine if a number of men claimed to be “experts” of women and what it is to be female, but none actually knew any women outside of their professional setting?  Can you imagine that when women spoke up or suggested these views were in direct contrast to what they, as women, lived on a daily basis, these male “experts” ignored them or suggested they couldn’t possibly know what they were talking about because women couldn’t be relied upon to make sense of such things?  Perhaps even suggesting that women tended toward hysteria and being overly emotional? Can you imagine laws being enacted that directly affected women’s lives and their bodies, with a complete disregard for how women felt about such laws?  Any of this sound vaguely familiar?

“What happened, Daddy?”

Em dressed as a pink poodle ~ 2007

Em- poodle

What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism

What follows are some of the things I wish I’d been told (and given) when we learned Emma was Autistic.  These are the things, in retrospect, I wish all those doctors, specialists, pediatricians, therapists and people who dedicate their lives and careers to autism had told me, but did not.  I believe our lives would have changed dramatically had we been told even a few of these things.  It is my hope that for those of you who may be at the beginning of your journey with an Autistic child, this list might help you avoid some of the many, many mistakes we made and a great deal of unnecessary pain.

1.  Seek out the work of Autistic people ~ most of the work I’ve listed was not available when my daughter was diagnosed, but it is now.  Take advantage of all that is out there, these people are leading the way.  If I had to choose just one thing that has had the single greatest impact on my life and the life of my daughter, it is these people.  My gratitude to all of them doesn’t come close to covering how I feel.  I have compiled an extensive list of blogs and books written by Autistic people as well as a couple of documentaries that are a MUST WATCH!   on the “Resources” page on this blog.  Please go take a look.

2. Autism is not a disease.  Read Don’t mourn for us by Jim Sinclair.  This may take some time for you to understand.  It’s okay.  Get the help and support you need so you can better help your child.  Try to think of autism in the same way you think about any groupings, a Mac and a PC, fiction, non-fiction, memoir and young adult, a shirt, a pair of pants, shoes and socks, a microwave and a gas heated oven.  Autistic, Neurotypical, Allistic, (or my personal favorite, coined by a friend) NT-NOS, we are all human beings.   Try not to judge one over another.  Judgment will not help you help your child.

3.  Presume Competence.  (This ‘post‘ helps explain what presuming competence means.)  If a therapy and/or professional does not approach your child with a presumption of competence, please consider finding one who does.  Tremendous long-term damage can come from not presuming competence.  Rethink how you view communication.  Listen to your child, not just to words, but to body language, facial expressions.  You may be surprised by the ways your child is communicating despite not being able to do so verbally.  Teach her to point with her index finger, first with support if needed and as time goes on, fade the support. Give her the appropriate tools and support so that she can learn to type or communicate by pointing to a letter board.    There are many wonderful iPad apps that can help with this.  Begin with sequencing games and colored tiles, or if she’s musical, notes.  Join them together to make patterns.  Show her first, have her mimic.

4.  Do not speak of or about your child as though they cannot and do not understand or hear you  (read Barb Rentenbach’s book for more on this).  This is something we did without thinking for years.  Sadly it is not the only regret I have, but one of many.  Still it is worth repeating.  Chances are your child can and does understand what you’re saying even if they do not show any signs that you recognize.

5.  Throw out everything you think you know and question everything.  There is a massive amount of misinformation/myths disguised as truth and fact regarding autism.  You may hear people say things like “They are in their own little world,” or “they are imprisoned behind their autism” these phrases are perhaps an accurate reflection of what non-Autistic people feel about the Autistic person in their life, but they serve to divide rather than unite and ultimately serve none of us. Be suspicious of anyone who says they know what causes autism or how to “treat” it.  Disregard any organization that describes autism and your child as tragic, an epidemic, a burden or any other word generally reserved for warfare.  If you read or hear something that causes you to feel fear, walk away, it is most likely inaccurate and intended to make you afraid.  None of us are able to help our children when we are terrified.  Fear can cause us to make decisions we will later regret.

6.  Set your child up to succeed.  My daughter is extremely sensitive to criticism.  Saying “No!” or criticizing her does not help her learn, but instead makes her feel badly about herself.  Encourage her with smiles and by asking her to try again.

7. Do not try to make your Autistic child behave like a non Autistic child, instead encourage your Autistic child to be the very best ______ (fill in your child’s name) they can be.  For more, read ‘this‘.

8.  Avoid comparing your child to any other child, Autistic or otherwise.  I have struggled with this one and continue to.  All I can say is, this is a work in progress. I hope one day to “know” this and refrain from doing it as it gets me into “compare and despair” thinking faster than anything else.  Emma is Emma.  She is best served when I remember this fact.

9. We parents are fallible.  We will make mistakes.  I’ve made dozens.  I wish I hadn’t made quite so many.  But I have.  If there is one thing I know without a doubt it is this – I will make mistakes, I am human.  I can admit my mistakes, tell my daughter how sorry I am, make a living amends to her by doing everything in my power not to repeat the mistake and continue to move forward without beating myself or anyone else up.  As my wise mother once said, “Show and tell your children over and over how much you love them, and one day they will forgive you.”

10. Get to know Autistic adults.  One of the single biggest misperceptions surrounding autism is that autism is only seen in children.  Autistic adults are often our best teachers and  many of them are leading the way so that our children’s lives might be better than their own.  These people are courageously and tirelessly pushing back against the deeply ingrained prejudices, biases and misperceptions that are rampant within our society.  (See #1)  It is my goal to honor these people who have beaten a path ahead of my daughter so that she may more easily live in this world that so often will not and does not accommodate her or give her what she needs to flourish.  They are speaking out, let’s all get behind them and give them the microphone so that more can hear what they are saying.  One day, the person holding that microphone might just be your child!

The year after Emma was diagnosed ~ 2005

Em - 2005

A Typed Conversation With My Daughter

This is the typed “conversation” I had with Emma last night inspired by the wonderful comments left here yesterday.  This was done with very little talking.  Emma’s replies are in italics.

“Hi Emma.  I know one of your favorite songs is “Beat it”.  What other songs do you like?

Emma likes Fireworks.  Emma likes to go swimming.

Hey!  Did you go swimming today?

Yes, it cold go swimming.

Emma, was the water cold or was the air outside cold or both?

 Both cold outside.

It is cold outside now because it is fall.  I like the fall when the air gets colder.  Do you like the fall too?

 Yes, I do like the fall too.

What do you want to do this weekend?

 I want to have a weekend with Jackie at the Vanderbilt wiyemseeay.  And go swimming.”

This was HUGE for Emma and me.  Rereading it now I’m kicking myself that I didn’t ask better questions and follow her lead more instead of directing the conversation.  For example I wish I’d spent more time talking to her about swimming instead of going off about the seasons, which were of little if any interest to her.  I could have asked her a great many questions about the pool and swimming and the water temperature, but didn’t.  I was so surprised when she wrote, “Yes, it cold go swimming.”  I literally laughed out loud when she wrote that, because this is just huge for her to introduce a new thought, to volunteer new information when typing together.  Excitement doesn’t really sum up what I felt.  I was ecstatic!

Emma kept trying to read my typed words out loud, but I reminded her to read silently.  I made a huge number of mistakes while having this conversation with her.  I corrected her spelling a couple of times, and wished I hadn’t.  I never know whether it’s best to let her spell things and go over the spelling later, separately or whether its better to correct it right away or better to leave it alone.  I wanted her to feel encouraged, supported and cheered on, not criticized.  So that’s something I am still questioning.  I also get so excited when she says anything off the grid, I get overwhelmed and can’t think what to say other than – “OMG you just introduced a new topic and I’m so excited!!”  Maybe I can learn to relax a little and go with it a bit more.  I am also aware that my excitement is an example of my NOT assuming competence or rather it is me feeling euphoric that Em shows her vast intelligence in a way that my NT brain can grasp.  I really want to learn how to move away from that limited thinking on my part.

When Emma was diagnosed with autism I remember that first day when all the therapists came to our home to work with her.  I’d done my homework, read all the materials the agency provided me with and then some.  Yet, I remember how everything was “dumbed down”.  Things that I knew she knew were treated as though she didn’t know them.  Really simple things were suddenly a huge deal if she indicated she knew them.  I remember vividly my confusion.  I began to doubt everything I thought I knew or assumed about Emma.  I completely capitulated to some set idea about my daughter given by a group of people who had never met her but made assumptions based on a single word – Autistic.

I’m old enough and have enough humility to admit I don’t know what I’m doing a great deal of the time.  This is not a popular statement in our culture of bullshit reigning supreme, even if it’s all a lie, even if it means people who know almost nothing about a given topic, but who claim “expertise” are suddenly seen as having something sensible to say.  The art of bullshit has become a well honed skill by about the age of ten these days.  It’s amazing how quickly children learn to adopt it.  Add a little chutzpah and you’ve got a kid who will go far in this world of ours without being particularly knowledgable in anything.

However, the art of bullshit requires a couple of things –  a massive dose of ego and an ability to lie.  My daughter Emma has neither of these.  Still, I am feeling confident she will do well in this crazy world of ours.

The ongoing construction of the Freedom Tower

It Begins With My Father

Emma – This morning

 

Yesterday’s post inspired more thought.  I have often asked myself why?

Why did I believe all those specialists, doctors and “Autism experts,” particularly as I have always been so wary of authority figures?  Why didn’t I question the specialists, why did I engage in a war for so long?  Why wasn’t I one of the parents who saw through the autism = tragedy model?  I have always been somewhat of a rebel, what happened to that rebellious streak?

The answer begins with my father.

My father had a horse back riding accident when I was nine years old.  He was just shy of his 50th birthday.   It was a Wednesday.  I was home sick with the flu.  For years afterward I blamed myself for his accident.  If I had put up a bigger fuss, maybe he wouldn’t have left.  If only I’d been sicker he would have stayed home with me.  If only I had begged him to read another chapter from the incomprehensible book he’d been reading to me, if only, if only…  But that wasn’t what happened.  He left.  He did not come back as promised.

The next few weeks are a blur of images and sensations.  Sounds of my mother crying behind her bedroom door.   My grandmother arriving in a dramatic swirl of lavender and rose perfume and silk, her hair perfectly brushed, the grey curls delicately framing her beautiful features, her gnarled, arthritic, fingers turning the pages to one of my school books as she helped me with my homework.  The afternoon I yelled, “I hate you” to my mother who dropped the rolls of toilet paper she was carrying to the floor.  Her receding figure disappearing behind the door to her bedroom, their bedroom, now half empty.  The rolls of toilet paper, partially unfurled, lay in disarray at my feet.  My fury, shame, and horror, tangled and confused, waiting for an acknowledgment I was incapable of giving, instead I stormed into my bedroom and kicked the drawers of my bureau, leaving the mess on the floor in the hallway for someone else to pick up.  My feelings, I learned much later, were not as easily left behind.

Visits to the hospital.  Doctors in white coats, clipboards, a red light next to my father’s bed, the beeping emanating from a monitor overhead, his life reduced to one thin jagged line on a screen.  The needles inserted into his veins, pumping clear liquid contained in bags held by poles and hooks into his damaged, broken body.   The nurse who crackled as she moved, her shoes squeaked as she approached.  The smell.  That horrible, unmistakable, antiseptic smell that burned my nostrils and pulled at my stomach, making me worry I might vomit.  The emotionless, grave, tones used by the doctors, carefully offering opinions as though they were a given, as though fact.  The statements, each a warning, a flag being hoisted up the mast of hopelessness –  “He may not make it.”  “He may be paralyzed for the rest of his life.”  “He will never walk again.”  Each pronouncement proven wrong.  Each learned statement shown up for what it really was, nothing more than a thought.

My father confounded them all.  He, alone, it seemed to me at the time, had risen up from the dead, shown them their stupidity.  He was underestimated time and time again.  For decades, through sheer force of will, determination and hard work, he showed the medical profession, and me, what was possible.   And yet, even my father eventually succumbed to a wheelchair the final decade of his life.  I saw first hand the prejudices, the attitudes of people who came into contact with him. And while his was also a disability, it was of a very different kind from autism.  He and by extension, I, never “accepted” it.  His neurology was unaffected as his legs gave out.  He needed support, yet proudly refused help.  When he died, “his” doctor refused to come to the house, saying my father was no longer under his care because he hadn’t been to see him in so many years.  We were forced to call 911.  My father had no respect for the medical profession.  He had proven them wrong.  His life was a testament to that.  He believed in self reliance.  He believed in himself.

When we were given Emma’s diagnosis, without thinking, I knew what I had to do.  I, too, would confound all the naysayers, those who said, nothing could be done.  Those who grimly wrote evaluations, itemizing my daughters deficits with matter of fact, clinical words.  Her vibrant personality reduced to a critique, her intelligence, not applicable, not even a number as she was deemed impossible to test.  I would show them, just as my father had.  It was the beginning.  I didn’t know it at the time.  I didn’t realize I had chosen the wrong road to go down.  I didn’t see that my initial, knee jerk reaction to her diagnosis was correct after all.  The word “autism” wasn’t what was wrong.  It was the information and interpretation of what that word meant that was wrong.   If you’d told me this at the time, I would have responded in rage.  I would have told you, you were wrong.  I would have told you I could save her from the diagnosis, when what I needed to do was save her from the misperceptions surrounding the diagnosis.

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Emma’s Struggle with Pronouns

I have written about this before – Emma’s continuing struggle with using the correct pronouns.  It is something one sees in children on the spectrum.  Pronoun confusion, lack of pointing at an early age, a lack of engagement or initiating play, these are all warning signs in small children and almost all children diagnosed with autism share at least a couple of these.

Emma uses the word “you” when speaking about herself, but also when speaking about someone else.  It’s a word she uses for anyone, herself included.  As in “You want to go on the 4-wheeler?”  Someone who doesn’t know Emma would assume she’s inviting them to go with her and the response is often an enthusiastic, “Yes, I do want to go on the 4-wheeler!”

Emma, then happily runs outside, turns the engine on and waits for the unsuspecting person to join her.  This scenario actually happened with our cousin Max, whom neither of the kids had ever met until last summer.  But when Emma says things like, “Bye Emma!” to the person she has just been introduced to, things get a bit more confusing.

So last night when Richard and Emma picked me up from my store in town, she said, “No not going to see July fireworks.  They’re too scary.  Mommy has to pick you up.”  Then she paused and said, “No, Mommy has to pick me up!”  We were surprised and pleased.

“That’s right Em!”  And then as an aside to Richard, “Wow!  That was pretty great.  She corrected herself!”

Emma then repeated herself several times, “Fireworks too scary.  Mommy will pick me up.”  She looked from Richard to me proudly.  “Good talking!” she said, before leaping into the car.

During the ride back to the ranch she tried various variations on this theme.  Each time using “me” correctly.

It was a proud moment for all of us.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

Labels – Autism

Labels are easy, they’re shorthand for what we want to communicate and yet they often obscure what is really being said.  (These are the things I think about when I’m away from my family for an extended period of time, as I have been, since coming out to Aspen because of work. All of this reflection will end in another four days, because the children and Richard will be joining me out here this Sunday – Hurray!)

We say things like – “oh he’s schizophrenic,” “she’s bi-polar,” “she’s anorexic,” “he’s an alcoholic” and the meaning gets conveyed and yet, is it?  After all that’s not ALL the person is.  It’s something they have been diagnosed with, perhaps are struggling with,  it’s a medical term, but it does not encompass who and what that person is in their entirety.  When I hear someone describe another person as “autistic” I understand that person has been given a diagnosis of autism, but I don’t presume to know much more about that person.  For example, I won’t know if this particular person diagnosed with autism can speak, read or write, they may have other issues, physical issues, other diagnoses added on to further illuminate, but the labels begin to overwhelm the actual person.  I can’t know from the various labels whether the person has a sense of humor, if they have terrific eye contact or no eye contact, whether they cringe at physical contact or whether they seek it.  The word “autistic” does not give me any clues as to whether the person is gregarious or shy, enjoys reading about painting or knows everything there is to know about quantum physics.  The label does not tell me about the person’s passions, dreams, desires or talents.  If I knew nothing about autism, having someone described to me as such might cause me to presume a great many things.  Things I would be completely wrong in assuming.

In my daughter, Emma’s case, the labels are almost always unhelpful.  I use them, it is shorthand after all, but they reduce her to something that doesn’t help people know her or understand her.  For example, Emma has a terrific sense of humor, she loves playing jokes, being silly, making faces, repeating things in a way that will guarantee a laugh.  When I use the word autism, or say to someone – she has autism – it’s the best I can do in a short period of time.  It’s a little like when we say to one another – “How are you today?”  The answer we all know to give is:  “I’m fine, how are you.”  Even if we aren’t fine.  Can you imagine if you asked that seemingly innocuous question and the response was:  “You better take a seat, this may take some time.”

I avoid using the word “autistic” because it implies more to me, than saying “she has autism.”   It’s a subtle distinction, but to me, anyway, it’s there.  Emma is so much more than a diagnosis.  She is pure Emma. And Emma is complex, just like the rest of us.  She is funny, a talented singer with a beautiful voice, she has a personality and temperament that are unique to her.  She loves to run and swim and swing her arms and zip around on her scooter.  She enjoys being read to, sung to, and any game that involves running.  I dislike that her diagnosis takes up so much room in people’s minds.  I do not like that when people hear she’s “autistic” they make assumptions about her, almost always incorrect.

Can you imagine what the world would be like, if all of us took all these labels, our shorthand for communicating and tossed them out the window?  We would live in a world, which would make prejudice and judgements much more difficult to come by.  We would have to live in the discomfort of not knowing.  But what a great way to live!

Emma – 13 months – eating a brownie.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com