Category Archives: Huffington Post

Henry Makes Waves & Everyone’s An “Expert”

Posted on October 17, 2012 by | 51 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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Huffington Post, Life and What’s Really Important

Posted on July 4, 2012 by | 8 comments

My piece on the Aspen Ideas Festival has just been published on Huffington Post.  Click ‘here‘ to read.  I wrote a great many drafts before finally submitting the post that has been published.  It was a long night of writing and rewriting until finally I knew I couldn’t write about the Ideas Festival without writing about my grandfather, but that too, made me uneasy.

The truth is I have a great many feelings about my grandparents and the various institutions they created and left behind here in Aspen.  Mostly I am awed by Grandfather’s vision and determination to see his vision through, while also aware that my feelings have little to do with anything.  I never knew my grandfather, he died the year I was born.  However I did know my grandmother, Elizabeth Paepcke.  As a child I thought all grandparents were like mine.  I assumed my experience was everyone’s.  I don’t remember when it dawned on me that this assumption was incorrect, but it was around that time that I also learned having famous grandparents came with other assumptions about me and my family that had nothing to do with our actual lives.

“Friends” became tricky.  People wanted to be “friends” because of an idea they had and not because they actually wanted and liked who I was.  “I” was often inconsequential in such interactions, it was the idea of being close to someone else they were after.  That makes for some odd interactions and can be disconcerting, a kind of objectification of another human being, but something we, in a culture of celebrity adoration, often do.

When I began social “networking” I felt horrified by the things others suggested I do to help my business.  It felt false to me.  I found myself going home at night incredibly depressed.  I would lie awake and wonder where was I in all of this?  My desire to get my business off the ground could be seen as self promoting in a way that other people were not accused of.  So began my process of trying to untangle myself from two people who created organizations and institutions that have had a longstanding impact on a great many people and following my own passions and interests.  I don’t always get it right, I still get caught up in trying to sort out what it is I need and want to do and what I believe others want from me.  It’s a balance, but like everything, its progress and not perfection.

Last night Emma came to me with the keys to the 4-wheeler in her hand.  When we got outside and turned on the ignition, it began to rain.  Not a light sprinkling, but a downpour.  “Em, are you sure you want to go for a ride?  We’re going to get soaked,” I told her.

“Yes!  Drive on the 4-wheeler with Mommy!”  Emma said, without hesitation.

I remembered a time when I was very young, standing at our front door and looking out at the rain.  I told my mother I wanted to go swimming.  I remember she laughed and said I couldn’t go swimming because it was raining, which made no sense to me.  As I remembered this, I zipped up my hoodie, took my glasses off and said, “Okay Em, hang on!” and put the 4-wheeler in reverse, before roaring off down the ranch road.   Emma clasped her arms around my waist and lay her head on my back as the rain pounded down on us.  It was bliss.  As we headed back to the house, completely soaked, I thought Em is going to be okay.  And then I amended that thought and said to myself, Emma IS okay.  I felt such a surge of relief, I began to cry.

I’m bombing down the road, with Emma clinging to my back and humming, in a torrential downpour, crying, soaking wet, and feeling euphoric.

These moments of pure joy shared with another human being, that’s what is important, everything else pales.

Happy Fourth of July!

View of the Rockies taken from the ranch while on the 4-wheeler

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Losing Sleep, Autism and Strange Noises in New York City

Posted on June 19, 2012 by | 17 comments

I’m operating on about three hours of sleep.  The piece I rewrote about Simon Baron-Cohen and The Theory Of Mind for the Huffington Post was published yesterday evening.  I knew I’d get some opposing views.  I’m used to that.  I understand that by putting my thoughts out there,  people will and do disagree.  So irritating when people disagree with me.  Eye roll, sharp intake of breath.

When I began writing at the Huffington Post I submitted a piece about Emma and her interesting use of language.  It was not a scholarly piece, (none of my pieces are, it’s not what I write)  just some observations and thoughts I had.  Once the piece was published I received a couple of scathing comments, many of which were marked as “abusive” and were removed, but one that remains, was from a retired speech pathologist who wrote,  “A jewelry designer (author of the article) who has bizarre ideas about language development should be countered by an expert opinion.”   I imagined as she wrote that comment she was looking grim and making tsking sounds.  I felt as though I were back in first grade being scolded for not paying attention.

Another piece I submitted about Emma’s painting, a number of people made derogatory comments, which were removed.  One of those comments was,  (I’m paraphrasing here) Oh great!  Stupid references to Dr. Seuss, Autism and painting all in one sentence.  How is this news?  

News?  I was supposed to write a journalistic, investigative piece?  Shit!  Where was I when that memo got sent?   I thought I was writing a piece about the joy I felt watching my daughter paint.

It’s anxiety causing to get such contemptuous responses, but over the years I’ve developed a “thicker skin” though I’m so literal-minded that phrase strikes me as really creepy.  Still, in this last piece it is I who am attacking someone else.  And while I’m sure Simon Baron-Cohen wouldn’t lose any sleep were he made aware of my rant about his questionable test and the even more questionable conclusions he’s drawn, it’s not in my nature to attack others.  I don’t feel comfortable doing it.  Against my better judgement I submitted the piece anyway because I believe strongly in its message.

As I reiterated in a comment I made to another person’s response –  SBC  is presenting himself as an “expert” on autism. It isn’t as though he was the parent of an Autistic child, had a blog and wrote the occasional piece for the Huffington Post, while making inflammatory statements, which everyone could read, laugh, argue with and forget. He has made a career for himself, based on his academic achievements. His theories should and must be held to a higher standard. His words and ideas have tremendous power. It is irresponsible to be in such a position of power while basing ideas and theories on faulty tests with no consideration of the implications. I, too, could cite many examples of my daughter’s actions, which could then be used to (erroneously) support SBC’s various theories. That doesn’t make his theory correct, it brings into question my thinking.  I urge you to read Dr. Henry Markram’s alternate theory – http://www.wrongplanet.net/article419.html – I can find many more examples of Emma’s behaviors, which support his theory. The TOM theory is a dangerous one because of the way it can be used to justify the negative perceptions of Autistics. If someone has little or no empathy, we are much more likely to behave in a less caring manner toward them. We may insist this isn’t so, but there have been studies suggesting otherwise.”

As a result of all this I’ve paid the price by getting very little sleep.  Ask me about the traffic patterns on 7th Avenue between the hours of 2 and 4.  And exactly what was going on with that woman who kept shouting WooWoo at around 3:30AM?  Was she celebrating?  In the beginning stages of labor?  These are the questions plaguing me at the moment.

Emma making her silly face, which pretty much sums up how I’m feeling at the moment.

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