Tag Archives: Intense World Theory

What To Do When Someone Hurts

When Emma was just two years old she was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified or PDD-NOS, which is the “it-may-be-autism-but-we-can’t-be-sure-maybe-she’s-just-a-bit-different-so-let’s-just-wait-and-see-what-happens-before-we-say-it’s-autism” diagnosis.  Two years later, Emma was diagnosed with autism.  But in 2004, when Emma was given her PDD-NOS diagnosis the neuroscientists, Kamila and Henry Markram, had not come up with their Intense World Theory for Autism.  The idea that Autistics have a brain that is far more sensitive to all stimuli than non autistic brains, was not something people were talking about.

Emma has since told me that she can “hear” people.  When I asked her what she meant by that, she wrote that she could sense people’s emotions and inner turmoil.  She could hear their moods.  I have been told and read similar things from other Autistic people.  This is something Barb Rentenbach also talks about in her must read, book, I might be you.  Now add to the intense sensory sensitivities that ebb and increase suddenly and without warning, lights, noise, touch, smells, tastes, feelings and you will begin to understand how overwhelming and unpredictable life can be.  Or, as Emma wrote last week, “On Monday a noise is pleasant, but on Tuesday the same noise is not pleasing to me.”

Yesterday, Emma wrote about what happens when she bites herself and the things others can do to help, as well as the things people do that make it worse and it made me think about my reactions to seeing my daughter hurt herself.  I can go through a fairly quick series of feelings.  I might feel scared, oh, no!  She’s hurting herself, this is terrible, I have to make her stop! and concern mixed with confusion, what can I do to make her stop?   But I also may feel other things too, like a desire to control the situation, annoyance and embarrassment that she is screaming in a public place, stress and overwhelm from the tears and her obvious upset, feelings of inadequacy that I should be able to help her more than I am, wondering whether I am a bad parent, believing that if I were a “good” parent, she wouldn’t do these things.  Questioning my own reactions, worrying that if I don’t force her to stop, people will harshly judge me or criticize me or believe I don’t care that she’s hurting herself.  Or maybe the situation is also stressful for me and I’m also in overwhelm.  And on it goes.  But as Emma wrote, “I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.”  So if I don’t spend the time to think about and become aware of what I’m feeling as I witness her, I will react in ways that actually exacerbate her overwhelm.

I am once again reminded of my car ride with my beautiful, friend Ibby while visiting her in Chicago this past December.  I wrote about that ride ‘here.’  What Ibby did was such a perfect example of what I needed, though I did not realize I needed it and could not have asked for it, had I been asked – what do you need?  A calm, loving voice, carefully telling me what was going to happen next and why, a calm loving voice coming from someone who genuinely loves me, who I know has no agenda, was not trying to control me, whose words and concern were completely for me, with no other motivation than to truly be there for me… this was what Ibby gave me during that car ride.  Ibby did not try to take away my feelings, she didn’t try to control them, she wasn’t judging them, she was calm, patient, accepting and above all, incredibly kind and loving.  And, by the way, Ibby could not stop the noise the wind shield wipers made, it was not something that was within her control, it was snowing hard, she could not drive without them, yet even so, what she did instead made all the difference in the world.

It seems so simple, it seems so obvious, but it is actually quite rare to have someone do this for another.  So I will end this by encouraging all who want to know what they can do to help someone who is deeply distressed, examine your feelings, really look at them and make sure you understand what you are feeling before you attempt to help another, because if you’re becoming upset with someone else’s upset, anything you do will cause the other person to only become more upset.  Until I can get to a place of having “helpful thoughts of calming kindness.  Reassuring words of understanding, instead of irritation and impatience”  my response will add to the other person’s overwhelm.

*I just have to add here, this is something I find very difficult to actualize.  It is a work in progress, but it is vitally important.

Ariane & Emma ~ 2011

Ariane & Emma ~ 2011

“Why is my Mind Autistic and Yours is Not?”

Yesterday Emma wrote, “Why is my mind autistic and yours is not?”

That sentence took over two minutes for her to write.  I say this as a factual statement so that people reading this have a better understanding of the enormous effort and energy it takes for my daughter to communicate.  If it took everyone a few minutes to communicate a single sentence, perhaps we would be more thoughtful about what we said and wrote.  Two minutes.  With someone like Soma, Emma is able to write much more quickly, but I am fairly new to this (I’ve been working with Emma on an alphabet board on a daily basis since the end of September) and so with me, it takes longer.  With someone else it may take even longer still, or she may not be able to write more than a single word.   But the more salient point is, that sentence is gold, and worth every second it takes for her to point to one letter at a time to create words and then whole sentences.

Until we found this way of communicating, we were left guessing about Emma’s likes and dislikes, what interested her, what she was curious about.  And while there were a great many things we knew or believed we knew without her telling us, there was also a great deal more that we did not know or understand.  For example, I was astonished to learn last week that Emma was curious about Africa and wanted to know why so many of it’s inhabitants are poor.  Later I asked her if she’d like me to read about an African photojournalist, Echwalu, whom I love and whose blog I follow, Echwalu Photography .  She said she was interested.  We have since begun subscribing to National Geographic and I am now reading articles from the New York Times to her.

“Why is my mind autistic and yours is not?”

So I did my best to explain that no one actually knows the answer to that question.  I explained that most people believe genetics plays a role and that though I am not autistic, I do share a great many “autistic-like” traits.  I went on to explain that there is more about autism that is unknown than there is known and then our session time was up.  Emma went to listen to music while I thought more about her question, and resolved to read to her the Markram’s, Intense World Theory.  I thought about how our brains differ, but also how much they are alike.

I thought about how relatively easy it is for me to communicate and how I take most of my communication for granted.  In fact there is so much I take for granted.  I thought about how easy some things are for Emma, things that I am not able to do, like singing on key, being able to remember a melody and imitate it note for note.  Her ability to absorb knowledge without having been taught, like multiplication, division, vocabulary words, to name just a few.

This idea that Autism is a massive list of deficits needs to change.  The truth is we, non Autistics know almost nothing about Autism and what it means to be Autistic.  In fact, the human brain is constantly astonishing neuroscientists.  To say we understand or know without a doubt what any one of us is able to do is to underestimate, not just ourselves, but everyone else too.

Emma ~ 2012

Emma ~ 2012

“Music is Stars for your Ears”

Profound. Poetic. Always unexpected. When Emma writes (in this case she was typing), she is able to express herself in a way that she isn’t able to with speech yet. But what she has to say is always (to me at least) profound, poetic and unexpected.

Take that above line for example. As she slowly typed, letter by letter and got to this point: “Music is star…” I wondered, where is she going with this? And no matter how many times I witness her write, I never cease to marvel at what she ends up saying.

It’s Richard here. Ariane has been traveling for the last two weeks doing her Holiday Trunk Show in Chicago and for the last day today in Aspen. She hates it. She is an incredibly talented, award-winning jewelry designer. Just take a look here and see for yourself. She began designing jewelry after some prodding from me because she had become so obsessed with autism and (many years ago) with finding a cure, that she was stressed out to the snapping point.

Ariane went to school for fashion design with a bunch of today’s top name luxury designers–an exclusive class at an exclusive school. But she hated the fashion world. I suggested that she channel all that talent and creativity in a different direction, so she wasn’t spending every waking moment of her life reading books about autism and searching the Internet for the latest studies and therapies and anything else under the sun she could discover about autism. That inexhaustible search led her to discover the blogs of autistic adults, films like Wretches and Jabberers, Supported Typing, Soma’s RPM, the Intense World Theory, and a hundred other things that have completely transformed our family in the most wonderful way possible. And by sharing her/our journey on this blog, I believe she is making the world a better place, day by day.

Ariane would never make such claims about herself. I’m happy to. She invited me to write a guest blog today while she is doing her trunk show. I’m certain she thought it would be all about Emma, but “heh heh” as Ibby would say.

If Ariane had a partner that handled the business side and left her free to simply design jewelry, she’d probably still be having fun with it. But these trunk shows are definitely a drag. I know for certain that she would much rather spend the day writing a blog post, replying to comments, working on one of the books she’s writing about her/our journey, reading more books and articles, chatting with her friends, getting a manicure–basically anything other than sitting around in a hotel room, waiting/hoping for people to stop in and buy some of her amazing designs so she doesn’t hate being there even more. So if you’re in Aspen, stop in and say “hi!” Oh, and bring your wallet. If you’re not in Aspen and love jewelry, or just love Ariane, send her a note, or a message or call, or Skype–or buy some jewelry after browsing on her website. She would never say such things here, or anywhere but once again “heh heh.”  I, for better or worse, am and shall always be: The King of Bluntness.

Now, after that shameless plug, let me talk about the session I had with Emma and “B”, who helps with Emma’s written communication, using Soma’s RPM method. Yesterday was a milestone because Emma used a keyboard throughout the entire 45 minute session, instead of the stencil board or letter board she usually uses. This was clearly a stressful adjustment for Emma, but she soldiered on bravely, and as usual, wrote some amazing things. Profound. Poetic. Always unexpected.

Rather than editorialize, I’m going to relate the entire session, using B: and E: for Emma. Some of B’s statements are paraphrased. All of Emma’s responses are exactly what she wrote, because the keyboard was connected to an iPad and it was all recorded.

B: What history topics are you interested in?

E: music, history, country, the world, the playground

B: Tell me something about music.

E: Music is stars for your ears.

B: (B gives a lesson about the origin of blues music with slavery) What kind of music are we talking about?

E: blues

B: Tell me something about our country in the 19th century as opposed to the 20th century.

E: there were slaves

B: What can you say about freedom?

E: less freedom when you are someones slave.

B: What do you think singing (the blues) did for them (slaves)?

E: how about it helped the crops grow.

(There was an interesting blurt Emma did here: “You left him there to die!” from her favorite movie Two-Headed Shark Attack. It speaks to me of injustice, self-interest and the horrifying results)

B and Emma then did some “Call and Response” blues-style singing together.

B:  What would you say about that?

E: when you call your friend they should not ignore you.

B: Can you come up with a call and response song?

E: I like to eat cake

the sweet is so nice

They sang these verses together a few times (ultra-sweet!).

B: Where in the country does the blues come from?

E: south

B: Do you have something to say about this?

E: there is fun music in the north also.

B: (B plays a video of BB King singing “Stormy Monday”) What do you think about that?

E: stormy tuesday it was. (the previous day was Tuesday and it was stormy).

B: (B tells a story about a teenage boy who was lost and later found by a homeless man who called the police and contacted his mother. The mom was very grateful and rewarded him.)

B: What did I say about the man?

E: homeless.

B: The mom was grateful. Why?

E: he found the son.

B: Years later there was a news article about the man whose name was Leo. Another man named Patrick used to pass Leo every day on the way to work. They began chatting. One day Patrick gave Leo an offer and he had two choices:

1. $100

2. A laptop, lessons everyday for an hour in computer coding.

(Leo took door #2, and in the article Leo coded an app later.)

B: What was one of the options?

E:  money

B: What do you think about the story of Leo getting lessons and coding the app?

E: he needed to get rewarded.

B: Any message for the world about anything?

E: hearing my response to your call is like being at a fun amusement park.

Image

And being present for all of this was like being in a fun amusement park too.

“Music is Stars for the Ears.”

Yes, it certainly is Emma. It certainly is.

Happy holidays to all! See you Saturday Ariane. Emma and Nic are counting the days and so am I!

Epidemic of Genius

Below is another epic length post from Richard. You have been warned!

I’m a science nut. Ariane, not so much. I constantly pester her with the latest science news I’ve gleaned from books, articles, documentaries, the Internet. I just can’t get enough of that crazy science stuff. One of my greatest frustrations is that I have some kind of math glitch in my brain which prevents me from learning much of what interests me, especially the nuts and bolts of physics and of course, higher mathematics — which I would really love to understand. Despite my brain-freeze, or math dyslexia, or whatever it is — I love numbers. I’ve even been known to do numerology readings. In short, I’m a seeker. Like many other non-scientist science lovers, I want answers to the BIG questions. Why are we here? What it’s all about?

For people like me, “What if…?” is a favorite lead-in phrase. When I heard Henry Markram’s TED talk and then read his Intense World Theory for autism and an interview where he theorizes that all autists could be genius savants and (here comes the real mind-blower) autism may be the next phase of human brain evolution – well, my mind grabbed that football and ran for the goalposts.

What if the Intense World Theory is correct? What if Markram is also correct in his theory of autistic genius? What if Emma is a genius savant too? What if all her friends at school are? What if every single one of the autists born every year are geniuses, or savants or genius savants? What if the staggering ONE PERCENT of infants now born every year with autism are ALL genius savants? What if new learning therapies like Marion Blank’s system catch on, and a whole lot more of all those savants born every year are able to communicate all the knowledge and insights they possess.

What if…(add your own far-fetched speculations here).

Well…if Markram is correctit’s a massive game changer…for all of us.

Here are some staggering stats: it is currently estimated that 2.2% of the human population possess IQs of 140 or more (the extremely arbitrary genius IQ cut off). Since the world population recently topped 7 billion (and since I suck at math I’ll gladly use that nice round figure), then 2.2 percent of 7 billion equals 154,000,000 million geniuses walking around. And since IQ tests for autists are notoriously inaccurate (particularly for those who are non-verbal) – then many adult autistics and those born every year will not be crowned with the genius laurel wreath, yet nonetheless they may possess staggeringly high intelligence coupled with the uncanny insights that their unique perception of the world provides them.

The annual birth rate is now between 19 and 20 million people. One percent of those babies will (eventually) be diagnosed as autistic. What if every single one of these 190,000-200,000 autistics turn out to be genius savants? What could be accomplished with that kind of creative horsepower, if acceptance and encouragement furthered their interests and yes, obsessions? Or at the very least, what fruits might be harvested if they weren’t bullied, teased, ridiculed, marginalized and segregated? If their abilities weren’t so consistently and grossly underestimated?

It’s something to think about. I’ve been thinking about it all the time now.

When Emma first received her diagnosis, I knew next to nothing about autism. I just knew it was bad. A terrible tragedy. The loss of our hopes and dreams for a ‘normal’ life and a ‘normal’ family. Something to grieve over. As the years went by, my perspective gradually shifted. Emma’s nearly continuous blissed-out happiness and her mischievous sense of humor made it a lot easier for me to deal with all the difficulties she had with sensory issues, changes in her routines, communication problems, etc., etc. — and all the difficulties I had coping with them.

Since we found a learning therapy that actually works, my fear-based perspective has altered dramatically. Emma can read, write, add, subtract and speak in complete sentences. She loves to learn. She carries her favorite books around everywhere. With the recent oxytocin boost, we now walk down the street hand-in-hand – a behavioral shift as radical and unexpected as it would be for me to teleport to Mars.

Now Ariane and I are blissed-out with happiness much of the time. Our exposure to the writings of adult autistics has been as consciousness expanding as anything we’ve ever experienced. Beautiful voices telling sad, poignant, frustrated and hysterically funny stories of what autistic life is like from the inside. WrongPlanet introduced us to Henry Markram’s Intense World Theory for Autism, which have radically altered our perspective – permanently, I hope.

The epidemic of autism has been a rallying cry for myself and most parents of autistics who were and/or are desperate for a cure. If we hadn’t discovered Dr. Marion Blank’s  program I might still be feeling the same way. If I hadn’t read Henry Markram’s theories I would never have entertained the possibility that the epidemic of autism could also be the epidemic of genius – a phrase I keep repeating over and over like a mantra.

What if? What if?

In the not very distant past, nothing short of a complete cure for autism was an acceptable goal. My goals are different now. I know Ariane’s are too. We want more effective treatments, therapies and learning programs that help autistics cope with the difficulties they face and make it easier to navigate in a world that doesn’t necessarily correspond to their perspectives. We want more research into the causes and the neurological differences, not so autism can be prevented or eliminated, but so the difficulties can be mitigated. We want ‘normals’ like ourselves to be more kind, compassionate, helpful, encouraging, inclusive and aware that the kid or adult they are looking at as a weirdo, gimp, or even a retard, might well possess intelligence far in advance of their own. They may be more sensitive, insightful, kind, creative and inventive than those whispering, pointing their fingers, snickering or simply turning away because all they can see is the ‘handicap’ – and they cannot bear to look at it.

When Ariane was pregnant with Emma and Nic, we opted out of having an amniocentesis. The doctor told us that there was a real possibility of miscarriage. “Don’t do this unless you’re prepared to terminate the pregnancy if you find out your baby has Down’s Syndrome. There’s no point in taking the risk unless that’s your intention.”

That was not our intention. We both agreed that, “We’ll take what we get.” We got Emma. And we are incredibly fortunate.

When the human genome was first sequenced it cost over a billion dollars. Now anyone can have their own genome sequenced for under $1,000 dollars. Soon it will cost less than a hundred dollars. Couples wishing to have children will be able to identify every gene marker that may indicate a susceptibility to autism.

With that knowledge will come new decisions. What choices will be made?

Ariane and I still have many decisions to make regarding how we can best advocate for Emma and help her learn and communicate and understand the world she lives in. We want many things for her, but we don’t want Emma to be cured anymore. We want her to be supported and encouraged to learn at her own pace. To express herself in her own unique and wondrous voice. When/if she is able to communicate in the manner of many of the autists whose blogs we’ve been so incredibly moved and inspired by, we want to discover what she has to say about her life, her loves, her passions and fears and hopes.

Then Emma’s Hope Book will be fully her story, instead of our story about her.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Shifts

Richard back again, with more good news. Emma continues to amaze and delight us with her nearly continuous playfulness, mischievousness and affection. Ariane and I have also been spending a lot of time visiting the blogs of autists and aspies, which have opened up a whole new world for us — and caused a dramatic shift in our perspective on autism and our goals for Emma. I’m a big believer in synchronicity and lately it feels like we are being bombarded with ‘coincidental’ occurrences that have had the accumulative effect of completely altering the way we’ve always looked at our journey together (I only say ‘we’ instead of keeping it to myself because Ariane and I have been talking about this about twenty times a day and we have been on the same page with most everything we’ve discussed).

For those who don’t know me well, I write fiction. My first novel is a supernatural thriller called The Book of Paul, which will be published soon. It is very dark and creepy, with graphic sex and violence — in other words, definitely not for kids. So quite some time ago I began writing a book I could read to Nic and Emma (or they could read to me) — a young adult fantasy called The Dream Palace. In many ways, it was and is my attempt to process my feelings about Emma’s autism and my hopes for her recovery – in other words, it began as a fantasy version of this blog. However, my perspective on what constitutes Emma’s “recovery” has altered in ways I never could have imagined only a few weeks ago.

Let me try and connect some of the synchronistic dots: we met BL in Aspen while on vacation who also has an autistic child. She introduces us to Dr. Sandy Lowe who has a very different theory on the cause of autism. He believes that a genetic vulnerability coupled with a viral infection of the mother during pregnancy, probably also combined with an environmental toxic insult causes a biochemical reaction that alters the natural neurological development of the fetus (something to do with cytokines but I don’t want to get lost down that rabbit hole). Sandy recommends stem cell treatments which we try without any dramatic results, but when discussing one of Emma’s post-treatment brain scans, he tells us about Dr. Marion Blank who is working miracles with autistic kids with her new learning program. Lo and behold, her program begins working miracles with Emma!

In my ‘spare time’ I also happen to have run a program for K-12 schoolchildren, encouraging healthy eating, exercise, literacy and other good works via positive messaging on the side of milk cartons — as in billions of milk cartons to tens of thousands of schools across the country — a very powerful influencer. So I decide to commit all these resources to an anti-bullying effort because we have had many issues with bullying at Nic’s school — and lobbied with only partial success for a more aggressive curriculum to address those problems. Needless to say, with our steadfast goal of getting Emma into a mainstream school environment, we worried about how much she might be bullied because of her differences.

In looking for established anti-bullying programs to partner with, I run across the Kind Campaign. It was founded by two exceptional young women, Lauren Persekian and Molly Stroud who were both traumatized by girl-on-girl bullying in school. They have produced an amazing documentary called Finding Kind where they toured the country, compiling a heart-breaking collection of stories from high school girls whose lives have been devastated by bullying. By the time Ariane and I finished watching this award-winning film, our previously entrenched goal of getting Emma mainstreamed has flown out the window! No way do we want Emma exposed to this vicious, cruel and traumatic behavior! While we’ve had issues in the past with her school, one fact is undeniable — she is loved to death by everyone in that school, teachers and students alike.

Our sudden abandonment of the mainstream goal had the most unexpected side benefit — our overall stress level plunged like a bowling ball from the Empire State Building! We had no idea how much of our day-to-day anxiety was rooted in our conviction that we absolutely, positively had to get Emma into a ‘real’ school right now! Voila! Our ‘happy index’ leaps from a 2 to a 9 overnight!

Next, my truly amazing wife, partner and life-saver Ariane, in her relentless pursuit of knowledge — not just to benefit Emma, but to enlighten herself about what life is like for adult autistics, begins visiting all these blogs which she then introduces me to and also blow me away. I’m hoping Ariane continues to provide links to all these wonderful sites since this post is already approaching my typical epic length, but I’ll just say that it completely alters my perspective on ‘curing’ Emma.

I’ve never felt that Emma had to be ‘normal’ for us to have succeeded as parents, but I’d be lying if I said I didn’t hold out hope that someday she’d ‘lose the diagnosis.’ Now, much to my relief — and Emma’s too I’m sure, I couldn’t care less about her obtaining a ‘complete recovery.’ She doesn’t need one! We want her to be able to function in our crazy world well enough to live independently and happily, but her quirkiness is a-okay. The strange thing is, I’ve always been an oddball, OCD type and so are all my favorite people –artists, visionaries, scientists, geeks and obsessive weirdos of very stripe. To be off the mainstream kick is like getting back to my own roots.

The synchro-fun continues with Ariane’s discovery of Henry Markram’s Intense World Theory for Autism — which oddly enough is almost identical to Sandy Lowe’s in regards to the cause of autism — and goes further to postulate that all autistics are savants of one type or another — and autism itself may be the next leap in human brain evolution, though apparently it’s still working out the kinks. Which brings me back to The Dream Palace.

One morning a long time ago I remember going into Emma’s bedroom and as she woke up, she said something to me in a long and completely articulated sentence. I was shocked to say the least. I remember telling Ariane about it but I’m not sure I could remember what Emma said by the time I told her. In fact, I no longer know for certain whether or not it really happened! Had I been dreaming? To this day, I can’t tell for sure. Given how strange it would have been for Emma to talk like that when she could barely speak at all, it seems obvious that it had to be a dream. But then again…

Regardless of whether it was ‘real’ or not, that incident became the inspiration for The Dream Palace, where Emma’s character named Daisy in the book, is able to talk perfectly in the dream world.

I’m a research nut. I enjoy the research process as much as the writing. Unfortunately, I could only find one research study of dream patterns and content in autists and it pretty much sucks. So of course, I wrote my own survey! I’m trying to get it out to autists who are willing to participate so if any readers have suggestions on how I could do that most efficiently please let me know. In the meantime, I’m rewriting the story because after reading Markram’s findings, I’m now convinced like he is, that not only does Emma sense, feel, and perceive much more intensely than us highfalutin ‘normals’ — she may indeed be much farther advanced than we are — which hopefully we will discover as her communications continues to advance so rapidly.

Bottom line? Life is good, very good. All it took was a complete shift in our perspective.

For more on our journey through Emma’s childhood of autism, go to:   Emma’s Hope Book