Tag Archives: Huffington Post

The Problem With “Scientific Studies” and Typing With Emma

Posted on November 19, 2012 | 9 Comments

Last week the first part of my interview with Peyton and her mother, Dianne Goddard was published on the Huffington Post.  Click ‘here‘ to read it.  This portion of the interview was about the horrific abuse Peyton experienced at the hands of two people who were related to her and meant to care for her.   The interview is an astonishing example of forgiveness, but a couple of the commenters questioned whether Peyton had, in fact, written the answers to my questions herself and presumably those same people also doubted whether Peyton was the true author of her book, i am intelligent.  Disbelief, despite the fact that before the book was conceived, Peyton wrote about her abuse and it was confirmed by the two people who abused her.  An abuse that was done in secret; an abuse so horrific it defies the imagination; abuse that went on for a very long time and was known by  none, other than Peyton and those who abused her.

Last Friday I decided to devote a post to FC, you can read it ‘here‘ and while none argued against FC and those who use it here on this blog, one of the commenters on the Huffington Post piece wrote, “I am just relating the controlled scientific studies on FC.  I am saddened that people chose to publish personal information and discount scientific data to mislead the public.”  As I read this I thought, but therein lies, at least part of, the problem.  This IS personal to many, many people.  For those who use facilitated communication it is the difference between being able to communicate and being in this world in a way that is not available to them otherwise.  It means no longer living a life in silence and feeling isolated, it means connection and it can mean the difference between being institutionalized or not.  For those people and their families, FC makes all the difference in the world.

As I reflected on all of this and the swirling debate surrounding the legitimacy of FC as a “valid” form of communication I wondered about the term “scientific study”.  What exactly constitutes a scientific study, what is the criteria for such a study, what are the guidelines?  I found this site from the USDA and there’s this on Judging Criteria for Scientific Research and this, Understanding Scientific Studies where I read, “The scientific process is a road of discovery. It is the process of gaining knowledge about the universe through the observation of measurable evidence. Contrary to what many people  believe, this ‘road’ is not  a straight, smooth motorway: researchers may take different directions of exploration, going down routes that twist, turn, and sometimes even backtrack or come to a dead end, before the facts are uncovered. Even then, the facts uncovered may be only part of a larger, partially understood phenomenon, which requires further research  before we come to  more complete answers.“

To return to the question of FC there is much more to be learned.  The studies that have been done to date -  Investigation of authorship in facilitated communication, Contested Words, Springlink an Evaluation of 8 Studies, Facts About Facilitated Communication, A History of Facilitated Communication and A Validated Case Study of Facilitated Communication show the wide array of “scientific studies” and the resulting conclusions which range from, FC is a hoax to Facilitated Communication is a valid form of communication.  Reading any one of the above links I’ve provided makes a compelling case for or against the use of FC.

And yet, for those of us who have personally seen FC used by people like Tracy Thresher, Larry Bissonnette and countless others I can say without a doubt that they are indeed speaking for themselves.  I can recount my own experience with my daughter who learned to write and type with hand over hand support that was gradually lessened with time as she showed a greater ability to write and type independently.  Today she no longer requires any support at all, types with her two index fingers, sometimes without looking at the keyboard and hand writes unaided as well.  However there are people who, because of their physical disabilities, cannot do this, may never be able to do this, and so for them, a facilitator will always be necessary.

For those who question the validity of FC, by all means, read the many studies, educate yourself.  As Amy Sequenzia once said to me, “it’s okay to be skeptical.”  However in the case of FC there are enough “scientific studies” that conflict and in the end only prove that some people are communicating using FC and their lives have been transformed as a result and others have not been as fortunate.

For any who are interested, here is a video of Peyton using FC that she and her mother sent me.

This was a typed “conversation” I had with Emma yesterday.

Me:  Hey Emma let’s type together!

Em:  Happy birthday der Emma.

 Me:  Em, your birthday is in January, but you are thinking about your birthday now, right?

 Em:  Happy birthday.

 Me:  We’ve been talking about your birthday a lot lately.  It’s exciting.  We are planning to go to a hotel with a swimming pool for your birthday and then to Elite Gymnastics for your birthday party. 

 Em:  And take a taxi.

 Me:  Yes, we will take a taxi!

 Em:  To go to that now howtel.

 Me:  Right!  We will take a taxi to a hotel and we will spend the night there.  All of us will go there together.

 Em:  Yes,  we will take a taxi to go to that new hotel has a pool.

 Me:  Yes.  We are going to find a hotel that has a pool.  I know that’s what you want the most; a hotel with a pool.

 Em:  Go in your room.

 Me:  Then what?

 Em:  Get are batigsot on take the elvalr up to the rof and go swimming in the pool.

 Me:  Yes!  We can go to our room, get our bathing suits on, take the elevator to the pool and go swimming in it.  That’s a great idea.  That sounds like so much fun!!

FC users Larry Bissonnette and Tracy Thresher (with his facilitator Harvey Lavoy) at the 2012 Autcom Conference 

Tracy types during the Q & A at AutCom Conference 2012

 

Movie trailer of Wretches and Jabberers

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Is Facilitated Communication a Valid Form of Communication?

Posted on November 16, 2012 | 30 Comments

I’ve wanted to write about facilitated communication for a while now, but am particularly motivated to do so now because of something that happened recently to Amy Sequenzia.  I interviewed Amy in September.  To read that interview on the Huffington Post click  ’here‘.  Last week Amy was interviewed by the Thinking Person’s Guide To Autism specifically on the topic of facilitated communication, you can read that interview ‘here‘.  A commenter questioned how it could be determined who, in fact, was typing Amy’s answers, Amy or her facilitator.  Amy then wrote a post published on Ollibean titled:  I, too, want to understand.  Amy writes, “I want to know why some people choose to discredit one method of communication, without learning the reality of the method and the people who benefit from it, instead of supporting broader use of all methods of communication, helping to create accountability and improve best practices.”

I decided to ask Douglas Biklen who is Dean of the School of Education at Syracuse University and author of one of my favorite books, Autism and the Myth of the Person Alone (Biklen, 2005, NYU Press) about all of this.  I asked Doug how he responded when people express skepticism regarding FC.  He said, “Ariane, on our website you will see a review of some pretty substantial studies that confirm the validity of facilitated communication. You can find these at this location:
http://soe.syr.edu/media/documents/2011/6/Research_Supporting_Authorship_version_22.pdf
Obviously the method can be done well or it can be done poorly. When done well, individuals move to greater levels of independence, in other words being able to type with little or no touch, being able in some cases to speak before and as they type or to read aloud what they have typed. You can see this in some of the documentaries we have made, including “Inside the Edge”
http://soe.syr.edu/centers_institutes/institute_communication_inclusion/About_the_ICI/Videos.aspx
and “Wretches and Jabberers”http://www.wretchesandjabberers.org/“

I don’t know that going to these various sites will completely sway those who are convinced FC is an invalid method of communicating, but it certainly is a start for anyone interested in FC for their child or who are curious about it.  For the sake of full disclosure I also found this article, Facilitated Communication – What Harm it Can do: Confessions of a former facilitator.  It is a very disturbing account of a facilitator who influenced the person they were meant to help and did tremendous harm and damage to that person and their entire family.  But the conclusion, to reject FC as a valid method, is not one I can support.  There are a great many people doing all kinds of things (not just working with Autistic people) who should be better trained, who should not be working in the field they’ve chosen because they are not suited for it, are not able to see how they are influencing their work or the “studies” they’ve conducted or have enough distance or perspective to see how their “interpretation” is not “scientific evidence”.  A few extremely well-known and influential psychiatrists who currently work in the field of autism leap to mind. These people have done tremendous damage to Autistic people because of their assumptions, inferences and the way they’ve interpreted data based on their neurotypical thinking about a group of people who are NOT neurotypical.

Two years ago we began to teach Emma how to form the letters of the alphabet.  Up until that point, no literacy method we tried worked.  But when we gave Emma physical support, by holding her forearm and even in some cases by using direct hand over hand support in helping her form the letters of the alphabet, she was able to progress.  From there we began to teach her, coupled with sequencing exercises, written and spoken demands, such as “give me the duck” from a field of five manipulatives, she was able to do so.  At the same time we taught her the letters on a typical keyboard and again used physical support, which slowly over many, many months we began to withdraw until after a year or so she no longer needed it and now two years later types and writes independently.  Had we not used this method Emma would not be typing and writing independently.

As Amy once said to me, “Being skeptical is okay.”  And as Doug wrote me, “regarding those who see the evidence in studies that validate facilitation or who see the documentaries where people type with little or no support, and yet still criticize or doubt the method, all we can say is that they need to be more open to the evidence.”

Emma’s unassisted handwriting and self portrait – 2012

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A Revised Interview With Amy Sequenzia!

Posted on September 12, 2012 | 8 Comments

After posting last week’s interview with Amy I asked her if she was comfortable with me asking some follow-up questions inspired by her answers to my original questions.  She, very generously, agreed.  This is the new extended interview! Amy talks about her poetry, (including a poem about having a seizure) writing, being in an institution and how it feels to be ignored and thought incompetent by so many.  This interview has also just been published on Huffington Post, click ‘here‘ to read it there and do “like” it, share it and tweet it.  We need Amy’s voice to be heard to counter the massive amounts of misinformation out there.  For all of you who wonder what you can do – share Amy’s voice.  Get people to read what she’s saying.  

Amy Sequenzia, a non-speaking autistic self-advocate, poet and writer, agreed to an interview with me. Amy is someone whose work I have been following since I met her this past spring. Her powerful book of poems, My Voice: Autism, Life and Dreams, can be purchased by contacting Amy here. Amy’s writing and poems are regularly featured on Ollibean.

2012-09-10-mail.jpegAZ: Hi Amy. Thank you so much for agreeing to this interview. You describe yourself as a self-advocate. Can you tell us how that came to be?

“I think it was in PA, when I had my first real contact with a group of autistics who where typing to communicate (The Lonesome Doves). That was in 2003, and I realized I could be speaking up for my rights to more people. After that I began writing poems that were a little bit about my life. Then I decided to write to, and meet with, legislators, was encouraged to write to newspapers and later for blogs.”

AZ: How old were you when you began writing poems?

“I wrote some things soon after I learned how to type that my family thought were poetic. When I was about 16 I had a good teacher, and I wrote poetry with her. But then she left and for a while I did not have good facilitators.”

AZ: Is poetry your preferred way of expressing yourself?

“Sometimes it is easier to write in verse. That happens when I want to write but the subject is upsetting or if I am hurting. Sometimes I just feel inspired.”

AZ: What were your dreams for the future as a child?

“I had many. I was surrounded by ableism, although I did not realize that back then. I remember two things: I wanted people to know I was smart, and I wanted the other kids to play with me.”

AZ: You’ve described how people have spoken about you when you were present, as though you couldn’t hear them or understand them. Can you talk about what that feels like?

“It feels like you don’t count as a whole person. It is rude and frustrating because I can’t respond or will not walk away. It makes me sad when people who love me do it anyway. Some people even continue to do this after being reminded that I can hear, type and think.”

AZ: Do you have memories of that happening when you were younger, before you could communicate through typing?

“Yes and I would get angry, frustrated, sad. Sometimes I would cry, sometimes I had a meltdown.
Sadly, it still happens.”

AZ: Were there things you did, sounds you made, actions you took when this happened?

“I answered in the question before, but I have to add this: I don’t have meltdowns anymore. But I need to have my support person with me to make sure I can express myself, if I want to. Some people still don’t get it.”

AZ: How did you learn to communicate through typing?

“It was a long and emotionally-draining session with someone from the Institute on Communication and Inclusion (I think it was called FC Institute back then). I was 8.”

AZ: From the day when you were 8, how many months or years did it take before you were able to type your thoughts and feelings, your opinions and able to converse, or was that immediate?

“It was immediate. But soon I began having seizures and for many years I made almost no progress. After that, finding good facilitators became harder. I can type with some people now, still hoping to be able to type with more.”

AZ: There’s been a great deal of negative notions and even so called “studies” done regarding facilitated communication. Can you address this idea that FC is not an accurate or meaningful way of communicating?

“It is how I communicate. It means it is how I can have my voice heard.

FC is a process, with clear steps and a final goal — independence. It is not easy and many factors play a part in the process.

As far as I know, from all the people who say FC is a hoax, none of them has ever interviewed a user who became independent, or has acknowledged the many studies, including double-blind studies done by different facilitators with different users. All this is documented.”

AZ: For those people who have only read the negative views on FC, is there anything that might make them understand what you experience when you try to communicate without FC?

“I am misunderstood. My face does not always show how I feel and I have other disabilities that prevent me from being more pro-active. My body can be stubborn. Without FC I don’t really participate in the world. But it is important to know that sometimes I choose not to type and other times I might be too overwhelmed or tired to type.”

AZ: Have you ever had a bad facilitator? If yes, how so?

“Yes. When I was in school, sometimes people would try to facilitate with me without any information about the method. Some would guide my hand; others would not offer resistance or the right support. I could not type like this.”

AZ: How did you cope with that?

“Sadly, I did not do anything. There was no encouragement from some and with others it was as if I was a piece of entertainment. I felt disrespected. FC is a lot of serious work. I had to wait until I met someone who believed in me and was committed to follow the best practices.”

AZ: How long did it take you to learn to type?

“I took only the first session for me to find out that I could type. Typing is also a matter of practice and trust. Today I am more confident and I can type fairly well with trained facilitators after a few minutes. If I know they will follow the best practices and nothing else interferes (like a seizure or spasms), I type really well, even if I don’t know the facilitator well.”

AZ: You mention that you have other disabilities. What are they and how do they impact your life?

“I have cerebral palsy and epilepsy. I also have dyspraxia. Movement is hard for me. I am unbalanced and I tend to bump on things; I have many bruises. I cannot go down stairs safely by myself. My body takes a long time to respond and I fall easily.

My fine motor skills are basically non-existent and get spastic sometimes. I don’t feel parts of my body as I think other people do.

I can deal with all that. But epilepsy is the worst. I have seizures almost every day, without warning, at any time. It is not nice.”

AZ: Can you talk about what it is like having a seizure? Do you have any warning?

“I wrote a poem…

“Seizures

Seizures are like falling into
a sad and dark hole.
Rest is necessary and no sense
is strong enough
Yet the senses are very awake.
Beside me is my soul
so tortured by synapsis
of unconsciousness.
Seizures are hopelessness
going deep into the zone
of nothing.
A giant man coming after me
vital, intense
like an entity of torture.”

Copyright 2005 by Amy Sequenzia

“It is scary, I feel like I am falling in a deep, dark hole. I only realize I had a seizure when I am back, after a while. I also have partial seizures that are like hallucinations. I don’t remember anything about those.”

AZ: Is there anything you’d recommend to parents of nonverbal children who are hoping their child might communicate through typing and/or FC?

“Give your child every possible chance to communicate. Don’t believe in every article or every ‘expert’ who says FC does not work. Go to the Institute on Communication and Inclusion’s website (ICI Website click  here) and question them yourself. Being skeptical is okay. That’s why Dean Biklen and the others at the institute do such a good job documenting everything.”

AZ: My daughter Emma is just learning to read, write, and type. She is extremely resistant, however. I’ve been told this is often the case. Were you resistant to communicating in the beginning?

“No. I wanted to leave the school/institution where I was living, so I had to make it clear. But it can be scary to have all the power to say things that can change everything.

I don’t know Emma. Maybe she just needs some time.”

AZ: When were you in a school/institution and for how long?

“I was 6 and I asked to leave after I learned how to type, when I was 8 years old.”

AZ: Can you describe that experience?

“Painful, isolating, lonely.”

AZ: What are the most common misperceptions people seem to believe when they first meet you?

“That I am ‘not there,’ that I am not smart or that I cannot think by myself, that I am a child and that I deserve pity. None of these are true.”

AZ: If you could write a script for a stranger meeting you for the first time, what do you wish they would say?

“Not what they would say, but how they would approach me. With respect and interest. Not ignoring my disabilities or how I look and act — I am not ashamed of that — but wanting to know what I think, how I feel.”

AZ: What is your living situation like now?

“I live with friends. It is their house, but it is our home. We call it life sharing. I have state funding which is not good, especially in Florida. But because my friends respect me, I can have a life I can be proud of, and happy with.”

AZ: Did/do you have a mentor? If yes, can you talk about that experience and relationship?

“My mentors are people who show me the many possibilities of my life. They don’t always know that.”

AZ: I know several people consider you extremely important in their own process of learning to communicate and in their life. They think of you as a mentor. How has mentoring others changed you/helped you?

“I hope it has helped them. I still need mentoring. It is a good exchange of ideas, experiences, encouragement and support. It feels good to be considered important in someone else’s growth. It is lovely.”

“Thanks Ariane. This was a good interview. And thank you for being supportive of autistic voices.”

Amy’s voice needs to be heard.  Please help me inform the misinformed, educate those who are being given incorrect information by any number of well-meaning people not just in the field of Autism, but all fields of  ”Mental Health” as well as Education by sharing Amy’s words.  Email this, share it on Facebook, tweet it.  Amy has given interviews to others as well as written a great many pieces for other blogs.  I am listing but a few of them below.  

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Huffington Post, Life and What’s Really Important

Posted on July 4, 2012 | 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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Ideas About Autism At The Aspen Ideas Festival

Posted on June 28, 2012 | 17 Comments

I’m attending the Aspen Ideas Festival for the next six days.  As a result I am meeting a great many interesting people.  But many people who see my Press badge are curious, what do I write about?  How is it that I’m at the Aspen Ideas Festival?  Inevitably the conversation comes around to autism, because let’s face it, that is what I write about more than anything else.  Autism is something that everyone has an opinion on, or if not an opinion, then a great many ideas.

Most of the comments I hear are in the – It’s an epidemic, vaccines must be the reason, or questions about where on the spectrum my daughter Emma falls.  If I say something positive about my daughter, they usually respond with the mistaken assumption, “Oh she must be Aspergers,” or “You’re so lucky she’s so “high functioning.”    As though that could be the only explanation for words that aren’t negative.  Amy Sequenzia eloquently describes her journey from ableist to advocate, on the blog, Autism Women’s Network.  It is the single best description I’ve read, which explains beautifully how our perceptions and ideas about autism affect those who are autistic.

Often people want to tell me stories about someone they know whose cousin, brother/niece/son/grandchild/best friend’s step brother/best friend’s neighbor, is autistic.  Sometimes people are genuinely interested and will ask me questions, but most of the time, they prefer telling me about that person they know twice removed who knows an autistic person.  There is a tremendous amount of fear out there.  I hear it all the time.  People talk about autism with the same grave tones they speak of the environment.

So I wasn’t surprised this evening when I met a couple who’s close friend’s grandchild was autistic.  ”It’s so sad, just awful,” the woman said.  And then shaking her head she added, “It’s such a dreadful disease.”

“Actually it’s not a disease.   It’s not contagious.  It’s neurological,” I interjected.

The woman paused and stared at me and then said, “It’s horrible.  Very, very sad.”

“I don’t see it as a tragedy,” I began.

“Oh,”  The woman interrupted me, “well, of course you don’t.”  She took a step back and smiled.  And just like that, the conversation was over.

When I have these sorts of conversations, I see just how far we have to go in educating the public.  I know we will have to undo centuries of ingrained thinking about disability.  I understand that some people will never be convinced.  I hear others who have an opposite and yet equally unrealistic view of autism.  They are the ones who usually bring god into the mix, or talk about angels, or how these children are all geniuses or shamans, but whichever extreme they choose it is still an extreme and both do damage to those who are living their lives on the spectrum.  Whether they are being condemned as a tragedy or placed on an altar, they are being put in an impossible position that does nothing to actually help them.

It’s tricky.  How do you think about someone who needs tremendous support?  For many it is impossible not to project pain, suffering and the idea of tragedy onto them.  But very few people I know who are autistic or disabled want pity.  They want help, support and acceptance so they can flourish.  Pity or the converse of that, adulation, holding them up as divine creatures put on earth to teach the rest of us some hard-earned lessons, is not something I’ve ever heard an Autistic say.

One of the presenters at the Aspen Ideas Festival, Louie Psihoyos, who directed the amazing Academy Award winning documentary, The Cove, said during the Festival’s opening, “A few thoughtful people can change the world.”

I believe that absolutely, I believe.

Emma on the 4-Wheeler

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Laura Nagle, Vectors of Autism and Other Exciting News

Posted on June 21, 2012 | 8 Comments

In response to my post – Losing Sleep, Autism and Strange Noises in NYC – I received a great comment (all the comments I get are great) but I’m referring to one specifically.  It was about the Theory of Mind as well as lack of empathy conclusions Simon Baron-Cohen and others like him have made.  The person who is autistic, wrote:  ”But we are not being laughed at, dismissed or ignored anymore. People are arguing with us. That means they hear our message and they are aware that it conflicts with what they have been taught. Their confusion will diminish over time. The people who need to be told what to think will always listen to, and agree with, the loudest voices. And our voices are becoming louder. If we perseverate, then we will persevere.”

In keeping with this thought, you must watch this YouTube video -  A preview for the upcoming “Laura Nagle: Vectors of Autism.”

The 50 minute documentary, which this video is a preview to, will be awaiting me when I return to NYC in July.  I will be reviewing it here and for the Huffington Post.  Leah Kelley has been posting about the documentary and Laura for a while now on her blog – 30 Days of Autism.  In this brief preview Laura talks about how quickly she can read, she says, “I’m good at that” (pause and then laughs) “I’m not good at life.”    I won’t say more as I really want everyone reading this post to please take 5 minutes to watch the video, it is wonderful.

I also want to urge all who are as fascinated and disturbed by some of the various “theories” out there about autism as I am, to go over to the blog – Autistic Hoya.  There are so many terrific posts it was difficult to decide which to add links to, but to begin here are two of my favorites (but the whole blog is an education)  The Dangers Of Misrepresentation and The Other Side Of Disclosure.

I will be covering the Aspen Ideas Festival for the Huffington Post from June 27th – July 3rd, unrelated to autism, but still very exciting.  I have no intention of shirking my posting responsibilities here on Emma’s Hope Book, but may be posting on the run as they say, so please forgive typos and seemingly random thoughts.  On second thought you probably won’t even notice as that’s pretty much the norm for me anyway!   I have been asked to cover the icare4autism conference in Jerusalem, July 31st – August 2nd.  I have accepted their generous offer and am very excited!  A quick back story – when Richard and I first heard about Henry Markram and his Intense World Theory for Autism (this link is an in depth scientific paper.  It is not light reading, but if you’re interested, it is very interesting), we read that he would be giving a talk in Jerusalem in August.  At the time, now more than seven months ago, we joked – wouldn’t it be great if we could go to Jerusalem to hear him?  Just over a week ago I received the invitation and learned that this was the conference he will be presenting at!

And finally, I am including two, completely arbitrary and utterly unrelated photos…  just because… well, because I can and I felt like it and they make me smile and maybe they’ll make you smile too.  Please ignore the dust.

Merlin and the Gator

For a little perspective…

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Losing Sleep, Autism and Strange Noises in New York City

Posted on June 19, 2012 | 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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Posted in Autism, Huffington Post, Simon Baron-Cohen

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((((((Emma)))))), Facebook, Twitter, Blogs and Other Joys

Posted on June 15, 2012 | 18 Comments

When you look at the title to this post do you read it to mean – Hugging Emma, Facebook, Twitter, Blogs and Other Joys?

(If you answered yes, you are correct.  ((((Insert name)))) = Hugging.  The more parentheses, the bigger the hug.)

Within the autism community where Facebook reigns as the ultimate gathering place, the use of emoticons, ways of expressing emotions and physical actions, are commonplace.  I would argue that within the autism community the use of emoticons is more prevalent than within the neuromajority population.  But I need verification from my Autistic friends before I make such a statement.  It’s a thought based on my observations and interactions.  Which, by the way, speaks as much against Simon Baron-Cohen‘s various theories about Autists lacking empathy and a desire for interactions as it does to the level of support, gestures of kindness and friendships that are developed and maintained over the internet.  (I just submitted an amended version of my recent post – An Empathic Debunking of the Theory of Mind – to Huffington Post so he’s very much on my mind these days.  I’ll give an update when I see if and when it’s been published over there.)

Facebook, a crowded virtual space where conversations overlap, people you’ve never met interject themselves into a conversation before moving on, friendships are formed, rekindled and developed, strangers “poke” you to say hi, even if the only connection you have is that you both occupy space in that crazy mosh pit that Facebook single-handedly created.  If you think about it in these terms, Linkin has a more conservative, suit and tie required at the door feel to it, I haven’t figured out where twitter falls in all of this, maybe it’s akin to speed dating, while blogs are the mothership, making the insanity over at Facebook all the more raucous and surprising.

It must be said, I hated Facebook when it began.  I refused to join, I felt indignant when people would discuss their “friends” or about something that had gone “viral.”  Who cares?  Who has the time?   I scoffed.  This is just a bunch of people with way too much time on their hands.   And then I would settle back to my tenth game of Spider, while reminding myself that I really should get some sleep.  But eventually I joined.  For business reasons, I told myself.  This is a pattern for me.  I observe, remain on the side lines, dip a toe in the murky waters, sit back, observe some more and then dive head first into the deep end, blissfully unaware of any rocks that may lurk under the surface.  I’m not encouraging this approach, it’s just an honest assessment of what I have a tendency to do.

Yesterday I was a mess.  For those of you who reached out, thank you.  I was teetering on the edge, trying to keep it together, not doing a great job, but doing my best to work, taking on one small task at a time.  And then my friend stepped in and held out her virtual hand.  (((((( Insert Name ))))))  Like a life line, she held her hand out and gently pulled me off the ledge.   Lots of emoticons were used.  I’m not fluent in emoticon, but she’s been a kind and patient teacher.  Did I mention she’s Autistic, not that it matters, except that it does, if only for this reason:  Autistics aren’t suppose to be like that.  That’s what we neurotypicals are taught.  Right?  It’s what all those autism specialists tell us, right?

She sat with me, literally, while I wept.  ((((((((((Insert my friend’s name)))))))))   She said all the right things and by the time we both went back to work, I was laughing.  But wait, that can’t be right.  She must not be autistic, because she doesn’t fit the mold.  Right?  Isn’t that what we do when someone defies a stereotype, instead of re-examining the stereotype, we relabel the person?  Can we all agree to toss this insane theory about Autists lacking empathy, lacking a desire for interaction and friendship?  Can we please just stop it?  Imagine if you tried to reach out to someone, only to have them reject you because of some mistaken idea they had about who you are and how you are supposed to behave?

Which brings me back to Emma.  My beautiful daughter.  I don’t know if she’s already aware of these stereotypes and how they apply to her.  My guess is, she is.  It’s one of the many things I wish I could control and change.  But I cannot.  What I can do is make sure she knows that I am here, supporting her, encouraging her, with my arms open for those times when she needs to feel them wrapped around her securely in loving embrace, just as my friend did to me yesterday.

(((((((Emma)))))))

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Posted in Autism, Parenting, social networks

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What’s a “Good” Mother, Anyway?

Posted on June 7, 2012 | 24 Comments

I cannot stop thinking about one of the Autists who commented on my latest Huffington Post piece.  He is Autistic and is unable to function without the support of his family.  He writes about his wish for a cure.   He writes about his short-term memory, his “lack of visual-spatial and motor abilities, inability to interact with others in basic interactions, weak attention span, processing speed, reaction time…”  He writes, “If I had skills and could really absorb knowledge, I’d have some kind of a career and I would do basic things without my family all the time.”

Before I responded to him I reached out to some Autists I know asking for their thoughts.  Some people responded, for which I am grateful.  Steve, diagnosed after his child was diagnosed, thoughtfully provided me with a number of links and introduced me to Amy Sequenzia, a non-speaking, Autistic self-advocate.  Amy blogs for a wonderful community blog Ollibean and was profiled on The Thinking Person’s Guide to Autism, Slice of Life Series (click on her name to read) and  Paula Durbin-Westby the mastermind behind “International Autism Acceptance Year”  also profiled on TPGA’s Slice of Life series offered some suggestions.

As I read their thoughts and opinions and words I felt a surge of anger.  Because these are the people the neuromajority should be listening to.  Take a moment to imagine.  Imagine you were unable to do a number of things without the help of others.  Think how you would feel if those people, the very people you depended on spoke to you with undisguised annoyance, or worse, outright contempt.  Think about how that would effect you.  You didn’t have the choice to walk away.  You didn’t have the ability to leave.  You had to stay because you needed their help.  But their help came with a price.  It wasn’t given freely.  There was disdain, irritation and often you were spoken to as though you were dirty, damaged or contagious.  Or perhaps people were kind, but full of pity and spoke to you as though you were a child.  Think how years and years of being treated this way would make you feel?  (Obviously this is not every Autistics experience, but sadly it is a great many.)

Now think  how you’d feel when the coverage in the news and elsewhere about you, about the things that effected your life, were spoken without a word from people like yourself.  Those voices weren’t being heard.  Those voices were drowned out by all the other louder voices intent on making decisions about YOUR life and for you.  How would you feel?  I would be angry and then I would feel depressed and in despair and yes, I just might wish for a cure.

But as the parent of an autistic child, that cure idea has done a great deal of harm.   It caused me to lose the ability to logically see things from a practical perspective.  As I wrote in my reply to Billy – When Emma was diagnosed I was determined to cure her. I thought that’s what a “good” mother should do. In my determination to cure her, I lost sight of who she was. I thought she was hidden under the “autism” and if I could get rid of it, there she’d be, like a baby chick emerging from its  shell. Only that’s not what happened. I couldn’t find a cure. I discovered, when I stopped looking, she was there, waiting for me to see her as she was, as she is. Will she have difficulty in life? Absolutely. Will the world treat her as less than? Yes, sadly so many will.  Some speak to her as though she were an animal. I would do anything to have the way people treat her change.

I can’t make people do that, but I can try to make them think about their assumptions. And while I’m doing that I can appreciate Emma for who she is in this moment, exactly as she is.

I don’t have time to write more now.  But this conversation, whether I just end up talking to myself, or whether I can get others to join in, I will continue, with the same relentless determination that I once pursued a cure for my daughter.

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Posted in Autism, neuromajority, Parenting

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Autism, AutCom, Huffington Post, Podcasts, Sprinkler Parks and Tea Parties

Posted on June 4, 2012 | 12 Comments

It was a jam-packed weekend.  Sunday Nic and Emma played together in one of the many sprinkler parks dotting this amazing city we are fortunate enough to call home.  (Not the sprinkler park.  Home, as in New York city… okay, you know what?  Never mind.  Just look at the adorable photograph.)

Yesterday, Richard and I spent the entire day at the Upublish BEA conference, which was pretty amazing.  Richard’s any-day-now-soon-to-be-listed-on-Amazon-five-star-Clarion-reviewed-amazing-genre-straddling-thriller, The Book Of Paul, will be available for public consumption soon and so this was a particularly relevant conference for him, and me as I am working on my book about Autism, our family and Emma.  I know – do we really need another book about autism?  I’m thinking we do, particularly after reading some of the comments on my most recent piece on Huffington Post, The Depiction of Autism and Why it Matters.
Meanwhile the wonderfully fun and up-for -anything Jackie, adored by both our children, took the kids to various parks and swimming.  She then invited Emma to a tea party celebrating her arrival to New York five years ago.  (This is the kind of thing we New Yorkers do, throw parties to celebrate our moving to this wonderful city of ours.)
Emma, thrilled with any event that affords her the opportunity to wear one of her pretty dresses, was extremely pleased.
Meanwhile halfway through the Upublish conference, I received an email inviting me to speak at the upcoming AutCom conference this October, which will be held in Maryland this year.  I am honored and look forward to it!
Friday afternoon my piece The Depiction of Autism and Why it Matters was published on the Huffington Post.  By Sunday it was getting some attention on Facebook and so they bumped it up on HuffPo, giving it a more prominent place on their Health News home page.  A large number of Autists commented, for which I am grateful, both for their perspective and support, but also because, as one of my favorite people, Ibby said, “You’ve found your daughter’s people.”
Finally, the interview I gave on Friday (my first podcast!) with Bryn Johnson of WebTalkRadio – Business Cafe – When a Passion Leads to a Business with guest Ariane Zurcher  is now available for your listening pleasure.  The first half is about business and being an entrepreneur and the second is almost exclusively about this blog and autism.

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Posted in Autism, New York City

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