Tag Archives: autism experts

The Tug of The Unknown

Posted on February 21, 2013 | 12 Comments

Ever since Em was first diagnosed I have looked to others to tell me what was best for her.  I have read countless opinions.  I have read hundreds of articles written by self-appointed Autism experts, educators and therapists.  I have listened to organizations, I have consulted doctors, neurologists and developmental pediatricians.  Emma has had quantitative EEGs, hearing tests, vision tests, colonoscopies, endoscopies, x-rays, and more hospital visits than any child her age should have to endure.  She has been prodded, poked, examined, questioned and discussed.  She has had more “professionals” come and go in her short life than I have in my entire 52 years.

A year ago I began meeting Autistic adults and what they were saying and describing first hand wasn’t what all those experts, doctors, educators and therapists had been telling me.  In fact what Autistics were telling me was often in direct opposition to what all those other people said.  The more I listened to what Autistics said and how they experienced their childhoods and life now as adults, the more I saw how wrong most of the professionals were.  It’s not that any of the Autistic people tried to predict what my daughter would be like as an adult, or that I came away believing I’d just met an older version of my daughter, but I’ve gained a clearer picture of autism and I am not as afraid as I once was.  As a side note, I have yet to meet a single Autistic adult who has assured me my daughter would be just like them, quite the opposite in fact.  Each and every person I’ve personally been in contact with has made a point of saying they are not representative of any Autistic child.

When I went to the Autcom Conference in Maryland last fall I met a great many older Autistic adults.  People who are in their 40′s and 50′s, some had been institutionalized, others lived in group homes, some lived with their aging parents, others lived independently, but all were Autistic and while it was surprising to meet so many (the hidden Autistic adults that our society knows almost nothing about)  it was a relief too because the fear I had and to a lesser degree still have about autism falls away the more time I spend with those who are Autistic.

My fear is about the unknown.  My greatest fears are those I create in my mind.  I have to remind myself of this on an almost daily basis.  I have tremendous fear.  I have always been fearful.  Long before I had children or got married I have lived with fear.  Fear of failure, fear of success, fear of relationships, fear of rejection, fear of abandonment, fear of being hurt, fear of hurting others, fear of saying the wrong thing, fear of life, fear of being.  You name it and I can figure out a way to fear it.  I have mornings when I wake up and feel fear like a second skin shrouding my body and mind.  There are days I cannot shake it.  There are days when the best I can do is get up and just put one foot in front of the other.  There are days when I cannot even acknowledge how scared I am.  A good day is when I keep doing the next thing that needs to get done and not say or do anything hurtful to anyone who crosses my path.  Those are the days when the image of myself is that of being covered in a thick cloak.  I keep my head down, keep to myself and do my best to not cause others pain.

Then there are the days when even that is too challenging a task.  Anger is almost always the result of tremendous, debilitating fear.  This is just one reason why I so vehemently object to the way in which autism is depicted in the general population.  Just about everything that is currently written by non-Autistic people regarding autism is fear based and increases fear.  And where there is fear, anger is not far behind.  Fear and anger cause many to behave in ways they wouldn’t, were they not feeling terrified and/or enraged.  Fight or flight.  I do both, sometimes within minutes of each other.  Neither is particularly helpful.

I know I still have a tendency to look to the “next thing” that will help my daughter.  I know this is what I have a tendency to do.  I am trying to trust myself and her more.  I am trying to remember that I don’t always know what will help and, as it turns out, neither does anyone else, but I can make sensible, informed decisions.  I am trying to accept that no one can predict with absolute knowledge what will occur in the future.  I am trying to parent my children with respect for who they are, what their interests are and not what they may or may not become.  I am doing my best to be present, to enjoy the moments of joy.    When I go off into future, fearful thinking, I try to gently pull myself back to the present without admonishment and judgment, but rather lovingly and with kindness for my own faltering, uneven progress.

Em – 2002

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Posted in Autism, fear, Parenting

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Henry Makes Waves & Everyone’s An “Expert”

Posted on October 17, 2012 | 50 Comments

Yesterday the interview (published on Huffington Post, click ‘here‘) with Henry, the 13-year old non-speaking Autistic boy, son, brother, friend, student and all around amazing kid who has been denied enrollment to the public school across the street from his house went viral.  At the moment it has 152 comments and over 1,000 people have “liked” it, with almost 400 people sharing it on Facebook.  The comments began pouring in yesterday afternoon.  A few were particularly troubling for a couple of reasons.  The first being that a completely uninformed person(s) made broad sweeping generalizations about autism while bolstering their opinions with statements like this:  ”and then there are the non verbal Autistic who need constant care.  One can’t tell if they understand language, but they can’t speak for some reason. I do know this as a fact from the Autistic that I’ve worked with in my youth.”  Another commenter suggested, “Maybe he should consider speaking …..If he wants to go to that school so badly…”  And yet another said something about how Autistic kids “drag” the rest of the students down.  All of these comments were uninformed, but the thing that was actually frightening  was when another commenter then referred to the first commenter as an “expert”.

So I lost it.  Completely.  Utterly.  Lost.  It.  Heart racing, hands shaking, head pounding, throat constricted, feeling nauseous, lost it…  Which is how many who are marginalized and live with prejudice, feel all the time.  That feeling of terror that their lives are threatened and in real danger as a result of incredible ignorance.  I should have walked away.  I should have done some breathing exercises.  I should have meditated.  But I didn’t.  Instead I reached out with words and hit back.  I used words to hurt.  I used words to wound.  I didn’t ask questions.  I didn’t wait for more information.  And here’s the thing, I don’t know that I was wrong to do so.  I feel ambivalent.  I feel I should regret my actions more than I do.

I responded with this: “…the degree to which you misunderstand Autism is actually more than frightening, it is terrifying. That you also worked with this population says more about the tragic state of the place you worked and their hiring policies, not to mention their training, which appears to be none, than your profound ignorance.”  To which he responded, “I wasn’t hired to do anything. The camp/school had normal and special kids and they had that one Autistic boy. I was nine. I wasn’t hired.”

People in the comment thread were describing a man as an “expert” who claimed knowledge of autism because he met an Autistic boy when he was nine years old.  At camp.  Nine.  And I thought of Joe Scarborough and his comment about the Aurora shooter.  I thought of Simon Baron-Cohen who actually is something of an “expert” and yet I completely disagree with his conclusions.  I thought of all the doctors, researchers, neurologists and “autism specialists” I’ve met, spoken with and consulted over the years, many of whom I do not agree with and some whom I do.  But the point is, so much of this is up for grabs.  There is a great deal of information out there that all of us have access to, but how do we know what is correct?  We’ve got doctors drawing conclusions that seem illogical and even irresponsible, while others whom we might agree with.  There are some very smart people out there working hard, publishing their work, making informed opinions, but how do we know who to believe?

I don’t.  What I do know is that anyone I read or hear I try (usually) to find out more about.  Who is this person?  What are their credentials?  What is their hands on experience?  And I get a second opinion from those who are autistic.  There are a number of people, all Autistic whom I particularly respect (this is by no means a comprehensive list and in no particular order, just thinking off the top of my head; please feel free to share anyone else I may have forgotten) Judy Endow, Lynne Soraya, Emily Willingham, Elizabeth J. Grace and Michelle Dawson.

A commenter on this blog wrote a hilarious comment about “Dr. Mom”, “Nurse Mom” and “Psych Mom”.  It was not only very funny, it was relevant to all of this. Who do we believe?  Hopefully not the guy who states they “know this for a fact” as compelling as the man might be for some.  And I’ll just add this; don’t believe me either.  I’m a mom.  I’m a writer.  I’m an artist.  I have opinions.  Sometimes I have really strong opinions, opinions that I think are right.  But I also know that over the years as I learn more, I no longer agree with many of the opinions I held a year ago, two years ago, three years ago.  My opinions change.  All I know is that I want to keep learning.  I want and try to keep my mind open.  Sometimes it’s really hard.  Sometimes I feel tremendous rage.  I don’t learn when I’m that angry.  But hopefully I calm down enough that I can go back to learning.

Let the learning continue!

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Posted in Autism, Huffington Post, Parenting

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It Begins With My Father

Posted on August 28, 2012 | 54 Comments

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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