Category Archives: controversy

Group Dynamics – This Was NOT the Post I Intended to Write…

I don’t like groups.  I never have.  There’s something about group dynamics that I find more than a little frightening.  Too often groups develop an entity all their own and while it may beautifully reflect many individuals within the group, it never reflects all.  The loudest voices are often perceived as having the “best” or the “right” ideas and others who are not as loud or are just in the minority fall into line or if they don’t, are seen as threatening renegades and nonconformists.  Aspie Kid wrote an incredible post last week about something related to this, The Power of Suggestion on his terrific blog Aspie Kid: Perspectives From the Autism Spectrum.  While his post is not about group dynamics per se, it is about how easy it is to convince people of things when they perceive the source to be trustworthy or “in the know”.

Studies have been done regarding the power of suggestion and how groups can influence individuals to do and think just about anything.  Below is the famous Asch Experiment done in the 1950s; it is truly incredible, as well as troubling.  It’s important to note, this experiment has been done repeatedly, but always with neurotypicals.  I would be interested to see the results if it were done with Autistics.

More recently Kazuo Mori and Miho Arai redid the Asch Experiment but had each participant wear glasses that showed them the same image, yet each saw different things, thereby making them believe the answer they were giving was correct, unlike the original experiment where all but one participant was told to choose the same answer regardless of what they actually believed.  They also used both men and women and found that the results when using women replicated Asch’s, but did not with the men.  (That women were more likely to cave and agree with the group or majority view despite what they “knew” to be true is a whole other post!)  You can read more about that experiment ‘here‘.  Further studies showed that when the participants were acquainted with one another they were even more likely to go along with the majority than when they were strangers to each other.

Seventh grade:  I was the new girl at a new school with new kids and teachers in a new home.  I was extremely unhappy and had been for many years, though I had little self-awareness.  It was just before Easter.  There were only a few months left before summer vacation, but I couldn’t imagine how I would get through the year.  In my desire to “fit in” I told a great many lies.  I had been doing this for years.  The lies were so easy and seductive.  Words that were understood by the other kids in this small junior high school to have been fabricated.  I was shunned and ate my lunch alone by the chain link fence bordering the oval track where I excelled at running the mile, mostly because almost no one else was willing to run the mile, they were much happier running the 50 yard dash.  I found a shred of solace in running, and eating my lunch alone next to the oval track made me feel safe.  I cannot remember much of that year except that despite this I was surprised to be invited to a slumber party by one of the “in” girls.  Everyone was friendly at first and I let my guard down.  Without even meaning to I told more lies, all the while ignoring the tug in my stomach that I shouldn’t.  Lies were so comforting to me.  I preferred the lies to the truth, because I could no longer sort out what the “truth” was.   

The following morning all the girls gathered in a group and told me they wanted to talk to me.  I knew what was coming.  I froze and sat staring out the large window of the large house nestled on a hill.  I heard their voices, angry, accusatory, hurt, but it was just noise swirling around me as I gazed out that window at the fog as it slowly, slowly receded over those Northern California foothills, burnt away by the morning sun.  Each girl repeated a lie I’d told.  Each girl repeated the things I said, often behind the other’s back in my attempt to be liked, to fit in, to be like one of them.   My mind went numb.  I left my body.  Much later, I do not know how much actual time had passed as time stopped, my mother came to pick me up.  ”How was the slumber party?” my mother asked.

“Fine,” I answered as the car sped away from those girls who I was clearly not like toward our home where I would at last be safe. 

In the refuge of my room later that day I felt something click deep inside.  I understood that I would never be safe.  There was nothing and nowhere I could go.  That day was the beginning of a long, painful slide into self-injury, bulimia, anorexia and addiction to quell the beast within.  There is nothing like addiction to shut the world out.  Addiction is the ultimate “lie”.  It is a living lie and betrayal of self.  I didn’t have the means to see that my actions had brought me hardship.  I did not understand yet that there was another way of being.  I didn’t have the necessary tools to guide me because I had long ago forfeited my self, there was no me to find or return to.  There was no “I”.  Addiction helped me forget the truth.

It is impossible to live in this world and not be part of a group. (Unless you are a hermit.)  We humans tend to crave companionship, whatever our neurology.  Yet we have a terrible time actually getting along peacefully with one another.  It took me thirty years to figure out a way to be with myself that I didn’t hate.  Slowly as I practice honesty, being kind and of service to others I was able to very slowly, very tentatively become a part of.  Groups can be wonderful.  Together we can accomplish and do what no individual can. I am a part of a number of groups that I have come to rely on.  But when groups become hotbeds of strife and gossip, where people forget that the groups principles are more important than any one individual’s grievance,  I know I must leave them.   I spent far too many years betraying my “self”.  I know how this ends.  And it isn’t pretty.

The Freedom Tower, taken this morning.   It represents the full scale of what we humans are capable of – to destroy or create… it’s up to each of us to decide.

Freedom Tower

“I might be you.”

I might be you. the terrific new book written by Barb Rentenbach and Lois Prislovsky, Ph.D awaited my arrival from our holiday travels.  I am only on page 51, but wow(!) what a book!  Barb is Autistic.  She also happens to be non-speaking and needs support doing almost everything including communicating.  Barb uses facilitated communication to type.  In her own words she explains, “The deal is, I still can’t talk, but I can type on a keyboard or letter board if someone supports my wobbly hand.  The process is called facilitated communication, or “assisted typing.” It is quite controversial, meaning lots of people think it is not really me doing the typing.  This infuriates me…”

For those who are dubious about facilitated communication, Barb now types independently requiring just a hand placed gently on her back.  In October of last year I went to a presentation given by Barb and Lois.  It was riveting, mind-blowing and made me rethink everything I thought I knew, but realized I did not.  Barb wears thick glasses and uses an oversized keyboard to type.  She has a terrific sense of humor, is incredible honest on all topics including extremely personal ones;  this book is a joy to read.  She discusses self-injurious behavior, feces smearing, violent outbursts, which her school viewed as baffling and without provocation and yet in the telling, one realizes this was not the case.

Barb eloquently describes the brutality of other human beings who do nothing to temper their contempt for any who appear different.  Barb writes, “Let me be brutally honest.  Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  Breathe.  Read that again.   “… Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  ”You.” Take a breath and let that in.  ”Children who grew up to be you.”  

Confession:  I am in second grade.  There is a little girl named Louise who wants to be my friend.  She has warts covering her hand, the hand that she has extended to me, the hand she wants me to hold, only I will not.  I am the new kid.  I am well aware of the unspoken rules of the playground.  You do not hold Louise’s hand.  You do not allow yourself to be seen with Louise.  You distance yourself.  You play alone if need be.  To be seen with Louise is to be like Louise.  Flawed, with warts for all to see.  Instead I tell everyone I moved from a foreign land and spoke another language, a language only I and the village I have moved from speak.  I lie about my family, I lie and say we lived in a field with a house made of straw.  I told these lies because I thought they made me seem exotic and fascinating.  I lied because, already at the age of seven I believed I was less than, not good enough, destined to be like Louise, with my hand outstretched to others, only to be rejected time and time again.

Barb writes about how she is unable to eat without making a mess, as hard as she tries, her hands do not do as her mind bids them.  At lunch a student reports her messy attempts to eat her sandwich and is told by a teacher that she will have to eat somewhere else, away from the others as she is, “making the other children sick.”  This book (and again I am only on page 51) made me stop and reflect on my own behavior.  Am I really as empathic, compassionate and wonderfully kind as I would have everyone believe?  Do I make assumptions?  Do I hold beliefs about others because of the way they appear?  What are my hidden prejudices?  Am I able to admit to them?   Who among us can say without hesitation that were our bodies not able to respond in the way our brain and intellect would have us, were we ridiculed and shunned as a result of that disconnect, that we would maintain our composure, would not act out in protest?

“Am I so different from any of you?” Barb asks.

Em sledding

The Latest From Autism Speaks

This is the email I received this morning.  It’s from Autism Speaks.   Please read and let’s discuss…

“CONTACT THE CAMPAIGNS TO LET THEM KNOW WE WANT OUR 1 IN 88 IN THE DEBATES!

Dear Ariane ,

We had a significant presence at the first Presidential Debate at Denver University last week. We are going to have an even bigger presence at the next two debates to show the candidates how big the autism community is!

We need your help to make the autism community, and all of our issues, a squeaky wheel in this election season. For the next debate, we don’t want just a mention of autism.

We want the candidates to discuss a plan for leadership on increased funding for dedicated autism research and appropriate health insurance coverage for all Americans with autism.”

In the first statement Autism Speaks writes, “… we want our 1 in 88 in the debates.”  When they say “we” am I one of the “we”?  ”We are going to have an even bigger presence at the next two debates…”  We are?

“Our” is a curious word to use when speaking of a group of people, many of whom can speak for themselves and those who cannot “speak” are capable of communicating, through typing or other means of communication, their thoughts and ideas.  ”Our” is a pronoun implying ownership or at the very least lends a sense of unity and inclusiveness as in “our politicians,” “our neighbors,” “our friends”.   What Autism Speaks is really saying  is “our Autistics.”  I don’t think the people I know, whether Autistic or not, would take kindly to that wording, but “our 1 in 88″ somehow gets a pass?

“We want our 1 in 88 in the debates!”  Really?  Is Autism Speaks suggesting Autistic people should be up on a stage or at a town hall debating the presidential candidates?  It’s an interesting and compelling idea and one I whole-heartedly embrace, except I don’t believe this is what they mean.  ”Behind every person with Autism is an army of support.”  I don’t think most of the people I know who are Autistic feel they have an “army of support.”  In fact most of the people I know who are Autistic feel they have very little, if any support.  But I’d really like those who are Autistic to weigh in here and say for themselves whether they feel they have an “army of support.”  Armies are usually employed to fight or fend off an enemy.  Who is the enemy and who makes up this army?  Am I part of the ‘army’ that is supposedly supporting my daughter?   Maybe me and Richard?  An army of two?  Where is the army of support that’s standing behind each and every “person with autism”?

Autism Speaks is much, much more than an organization attempting to raise awareness or one that insists they speak for Autistic people while doing nothing of the kind.  They are running a campaign, not a campaign that raises money to help those with Autism, but a campaign that promotes fear and generates terror.  Anyone who  has spent any time in the advertising business knows, fear causes people to open their check books faster than any other single emotion.  Autism Speaks does a brilliant job using language to convey other, more subtle meanings.

Autism Speaks is interested in having autism addressed by politicians, a worthy and important suggestion that ALL of us can agree on.  Except Autism Speaks is NOT a leader in showing the world how to INCLUDE Autistic people in the building and formation of their various programs.  Autism Speaks uses the words, “Autism Speaks it’s time to listen.”  But who is it they are suggesting we listen to?  Not Autistics.  They have positioned themselves as an organization which represents Autism.  They have self-appointed themselves as the “voice” of autistic people despite the vehement protests by so many who are Autistic.

Can you imagine an organization that suggested they spoke for the American people and yet were made up of people of some other nationality.  An organization which only had one or perhaps two Americans on their board, advisory committee or occupying more than one or two seats of the upper echelons of their organization?  Imagine for a moment how you would feel if an organization called themselves: “Americans Speak it’s time to listen”, yet those who were talking weren’t American and when you tried to say something you were routinely ignored.  Imagine how you would feel if this organization continued to insist they spoke for you and yet when you heard them speak you didn’t recognize yourself or any of those you knew.  Just imagine.

To Mitt Romney and Barack Obama:  please inform yourselves about autism by listening to those who are AUTISTIC.  That’s the discussion I’m interested in listening to, the one that includes autistic people and not those organizations that say they do and yet do not.

Joe Scarborough’s Ignorance And What It Means To The American Public

I wanted to write about how Richard came home yesterday (Yay!) and how we took Emma to the Chelsea Market and how she insisted on wearing a pair of black patent leather shoes, turquoise tank top and pink terry cloth shorts with white hearts.  I wanted to post a couple of photos of her so you could see for yourself how great she looks, but when I sat down to write I knew I had to write about something else.

I don’t want to talk about Joe Scarborough any more.  Yet his unfortunate, ridiculous, careless and ignorant remarks, make it impossible not to mention him, because he has a huge following, because people imagine he knows something about Autism.  Joe Scarborough’s remarks are indicative of a larger issue – ignorance and misinformation, which leads to opinions and a general consensus about Autism that is incorrect.  One such commenter on an article about Joe Scarborough’s remarks, said he believed Joe Scarborough knew more about autism than he did because he has a son who is Autistic.  And that is exactly why this is about more than just some asshole with a radio show.  There are countless people spewing all kinds of venom on the radio and everywhere else.  Much of it is dismissed.  But when someone, whether it’s a pseudo celebrity or a talk show host with a large following says they have a child on the spectrum ears perk up.  Forget that AUTISTICS are talking about what it’s like to be autistic ALL THE TIME and their words are almost never in accordance with what that parent with an Autistic child is saying.

So just to reiterate:

Autism is NOT a “mental health” issue.  It is neurological, neither good nor bad, just DIFFERENT.

Joe Scarborough, (I know, there’s his name again) said in a statement he made yesterday, which was neither apologetic nor a retraction from his original inflammatory comments, “I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day.”

Autism Speaks does NOT provide badly needed support to Autistics.  In fact Autism Speaks is uniformly HATED by a massive number of Autistics who speak to that fact on a daily basis.  If you google “Autistics who hate Autism Speaks” you will see more than a dozen pages of links addressing why this is so.  (Really, I just googled it.)

While I’m at it, let’s dispel a couple more myths, something Autistics are doing ALL the time on their blogs.

Autistic people are not inherently violent.

Autistic people do not LACK empathy.

Autistic people are not all loners sitting in a corner banging their heads against the wall  (That would better describe me right about now)  until they can no longer take it and go on a murderous rampage.

Autistic people are not all depressed and friendless.

I’m depressed right now.  But this isn’t about me, or how I feel, or anything else that contains the word, me or I.  This is about prejudices and prejudices are always negative, reinforced by ignorance, ingested by those who believe they are being told the truth by someone who is more knowledgable than they are about something they know nothing about.  This is how it works.  This is how it has always worked throughout history, the demonization of a group of people whose voices are drowned out by the larger roar of ignorance and stupidity.

I refuse to end on this note, however.  So here.  Here are a couple of photos of Emma in the outfit she threw on to go to Chelsea Market yesterday evening.  Because Em is one more example of what Autism looks like.  Emma is inherently HAPPY.  Emma is inherently SOCIAL.  Emma is inherently KIND.  Emma is inherently EMPATHIC.  I’m trying really hard to follow her lead.

This is Autism.  This is Emma.

Loved that as I took this photo a woman wearing black patent leather pumps and turquoise dress walked toward her!

“I can’t reach!”

Related articles

Breastfeeding? I’m More Interested In Emma’s Culinary Skills

All of you have undoubtedly heard and some may have even read the issue of Time Magazine featuring a beautiful young woman on the cover with her three-year old son, who by the way, looks large enough to take on my 12-year old, (but that really is beside the point, or maybe it isn’t actually) standing on a child’s chair while his mouth is glued to her delicate breast, presumably breast feeding.  Both are staring into the camera while the text reads “Are you, and in large, red, bold type, Mom Enough?”  I’ve included the photo at the end of this post.

This is not a subject matter I care about.  At all.  They may as well have made the headline  ”Masturbation:  Who Does and Doesn’t.”  My response would still be – who cares and frankly, who has time?  I haven’t picked up a magazine, any magazine for a long time.  My idea of reading a magazine is to glance at the salacious headlines on various covers while in line at Duane Reade picking up another bottle of shampoo because Emma has just emptied the contents of the last bottle into our sink while stirring it around with a large wooden spoon and singing, “Stir, stir, stir the soup, stir, stir, stir the soup…”  (I’m taking run on sentences and parenthetical remarks to a whole new level here.  Feeling sadly proud of this, I should add.)  In any case, I’m showing up late to this particular party, something I seem to have a knack for, because I’ve got a lot of other stuff going on and simply don’t have time to keep up with the latest “news.”

But last night while waiting for Nic’s school concert to begin, I scrolled through some tweets and came upon this article written for Redbook (another magazine I never read), by Joslyn Gray entitled, 10 Reasons I Don’t Care About Time’s Breastfeeding Cover.   Had I not had an hour to kill, had I not forgotten to bring any other reading material, I would have ignored the tweet and thus the article and would have missed out on this hilarious piece.  I had to share the link here because I laughed out loud while reading it.  Literally.  Out loud as in inadvertently snorting.  Joslyn Gray also has a blog – Stark. Raving. Mad. Mommy.  I haven’t had time to go to it, but intend to.

After reading the article I had to find the actual cover of the Time Magazine piece.  As I looked at the cover, I thought – How much did this child weigh at birth?  How is it possible that her breasts are that small and perky and yet contain enough milk to nourish such a big kid?  Is he that tall because she’s still breast feeding?   Calcium…  And then I made a mental note to encourage Nic to drink more milk.  

I then went off into a whole reverie of when I was breast feeding my children and how I luxuriated (briefly, oh so briefly) in having, what Richard and I joked, “porn tits” because when they were engorged with milk they became rock hard and therefore looked fake, as in 1950′s fake, before cosmetic surgeons perfected the art of more natural looking and feeling, I’m told, breasts.  Emma didn’t get her teeth until very late and yet all she wanted was to eat real food.  Nic got his teeth early and yet preferred breast feeding.  It all seemed like a cruel joke.  Emma would snatch whole steaks off nearby plates while the unsuspecting person would stare in surprise at their now empty plate and wonder what happened, while she gummed the steak voraciously.

Thankfully Nic’s concert began, interrupting my musings.

The point is I, like Joslyn Gray, don’t care about who breastfeeds, who doesn’t, for how long or anything else breast related.  I’m much more interested in figuring out why Emma thinks pouring an entire bottle of shampoo into the kitchen sink and then mixing it with a wooden spoon constitutes soup.

The magazine cover that has America talking

My latest piece The Depiction of Autism and Why it Matters published in the Huffington Post