The Autism Revolution – Part 1

Martha Herbert, MD, PhD, is a pediatric neurologist who walked away from her private practice to immerse herself full-time in autism research.  She found that under the time constraints of third party care in metro Harvard Yard, she was unable to spend the time necessary to give proper care to the increasingly challenging population with whom she was dealing.  The alternative of course is to establish a practice in which patients pay the doctor fees commensurate with the time required, a revolutionary concept in its own right. But Dr. Herbert speaks to a revolution in  medical thinking about autism, one that conceptualizes it as a whole body issue, not just a genetic/neurological problem isolated to modules in the brain.  Here’s a great quote from Dr. Herbert:

“The more I worked with my patients, the more I realized I had a choice: to ‘see what I believed,’ or to ‘believe what I see.’ If I believed that autism was a genetically determined, lifelong brain impairment, then I would have to deny to myself the extraordinary capabilities and changes I saw in my patients. If I believed what I saw, then I would have to re-think everything I knew about autism.“

In and of itself this isn’t so revolutionary.  Individuals like Patty Lemer have been championing this whole body approach to Autism for many years.  But what is new is the admission, more like an admonition from a clinician/researcher with the stature of Dr. Herbert to say that we have to look at Autism research in a very different way, as she does in this video clip.  In essence Dr. Herbert is saying that Autism represents such a heterogeneous population that we have to learn to study each child individually rather than rely on traditional large scale trials on any particular interventions.  There are ways to do this with rigor, but more on that in Part 2.

This PBS interview with Dr. Herbert also helped me understand something about physicians that is an enigma of sorts.  I love the question posed by the interviewer:

“How do you explain the hostility in a lot of the medical community to the treatments that parents of autistic children are using to treat these biomedical conditions?”

At first Dr. Herbert seems taken aback by the term “hostility” but any of us who have dealt with pediatricians or pediatric ophthalmologists hostile to our approach can certainly identify with the question.  Dr. Herbert’s response is marvelous, and essentially points out that while many physicians feel that what parents are doing is insane or incongruous, parents are actually practicing good systems biology in pursuing head to toe treatments.

Even though it’s a back-handed compliment, I like what Dr. Herbert has to say about developmental optometry on p. 152 of her book:

“If reading problems emerge later, they may have roots in earlier sensory, speech, or language problems.  They may also have roots in visual problems.  A child may have trouble getting the images from each eye to converge into one image, and his may slow him or her down.  An assessment by a developmental optometrist may identify visual problems interfering with reading or learning.  While many doctors consider those professionals to be controversial, they do offer a program to address use of the eyes and not just acuity of vision.  For children with autism, the brain and motor system may create a lot of problems with the use of the eyes as well as other senses.  Visual problems can also contribute to learning problems earlier in life.”

At one point in my career I would have been bothered by being painted as “controversial”.  Now I view it more in the context of Dr. Herbert’s message.  We, along with the parents of the thousands of children we help to rise above an artificially imposed genetic ceiling, are simply practicing good systems biology, and pity the pediatricians and pediatric ophthalmologists who just don’t get it.  It’s all part of the hostility hypothesis, and positions us squarely in the center of The Autism Revolution.

How Do You Say “Gotta Poop” in Latin?

One morning after featuring an entertainer known for scatological humor who would probably qualify for membership in Mensa, the Today Show featured an adorable three year-old (the youngest U.S. member of Mensa) who stole the show by insisting that she had to go poop after playing to the camera.

Like many of you, I always thought Mensa was an acronym that stood for “I Am A Stuffed Shirt” in Latin.  Sure, I knew it was a membership fee organization that charged for IQ points and held Trivial Pursuit parties.  But to set the record straight, Mensa is Latin for “table”, because it treats all members as round-table equals – that is equally bright irrespective of race, creed, color etc.  I was half expecting little Emme to come up with my internet source version of her request to go poop in Latin (Licet mihi ad latrinam vadere?).

But what she does in English is impressive enough.  Check out this video and tell me what you notice:

That’s right.  Little Emme is wearing a hefty lens prescription in her glasses.  When Emmelyn Roettger was an infant, doctors had diagnosed her with unspecified delays and cautioned that she might have autism. Her parents were concerned when they observed that, at 9 months old, Emme seemed to avoid eye contact and never reached for toys or tried to crawl.  Her mother thought to take her for an eye examination, and it was discovered that she was highly farsighted in both eyes.  Once she obtained her lens prescription at 10 months of age she began to exhibit a voracious visual and intellectual curiosity,  learned to identify letters at 15 months of age and began reading at two years of age.  Hyperlexia, however, can be a double edged sword.

Emme began to wear an eye patch last month, so someone is monitoring her for amblyopia, though I’m not sure who it is.  It’s curious that nowhere online or during the story this morning was there any comment attributed to Emme’s doctors.  The fact that a whole new world opened up to Emme hinged on her mother, a 41 year-old former sixth-grade science teacher living in the D.C. area, having a hunch that her poor eye contact, disengagement, and delays in developmental milestones might be related to vision.  Four years ago, before Emme was born, I published an article in Optometry, the Journal of the American Optometric Association, showing how public health programs such as InfantSEE can and should serve as early assessments to identify children such as Emme.  A year later I co-authored an elaborated version of the concept with Dr. Jack Richman in the journal Optometry and Vision Development in a theme issue on Autism.  We showed a four month old averting eye contact with her mother until she puts on her high plus lenses, as reported by Lea Hyvarinen.

It is fair now to ask this question:  At what point in our country will we move beyond infant and toddler vision assessments only when there is concern about strabismus and amblyopia?  With a spotlight on the importance of early intervention for a wide array of developmental disorders, disorders of visual development such as Emme experienced shouldn’t be a surprise.  As far back as 1986, developmental optometrists demonstrated that those children having even a moderate amount of farsightedness compensated by appropriate lens prescriptions prior to age four show significantly fewer visual perceptual deficits than their counterparts who were left uncorrected.

Emme is fortunate.  She has a mother who played a hunch about her vision that has taken her to Mensa status.  Most infants and toddlers have parents who are just as caring, but not as fortunate.  They place their trust in professionals to give them appropriate guidance when there are early signs of autistic-like behavior.  We encourage all pediatric professionals and early intervention specialists to acquaint the public with programs such as InfantSEE for routine vision assessments prior to the first year of age, and to access the skill and guidance of developmental optometrists for children of all ages who are not achieving to their full visual potential.

- Leonard J. Press O.D., FCOVD, FAAO

A Full Life with Autism

We previously highlighted the success that our colleague, Dr. Carl Hillier, has had in helping patients on the autistic spectrum and his involvement with the Autism College Faculty. At our current visionhelp group meeting, Dr. Hillier shared copies of a new book written jointly by Chantal Sicile-Kira together with her son, Jeremy Sicile-Kira, A Full Life with Autism.  As Jeremy notes, “Having autism has hindered my ability to speak, but not my ability to communicate.”   In proof of this, consider what he writes about vision therapy on p. 39:

“A few years ago, I started vision therapy.  Before vision therapy I could only see fragments instead of seeing objects as a whole.  Faces looked like portraits painted by Picasso.  Vision therapy trained my eyes to get the whole picture of everything I see.  I think vision therapy helps me to get my eyes and hands working together.  The goal is to coordinate my body with my vision, and my vision with my body.  It takes a great deal of effort on my part to get my body used to my new way of seeing.  It’s very hard for me to control the urge to take my prism glasses off, because my body isn’t used to having them on my face.  The glasses are a great component to my eyes and my brain because my eyes are like a door for my brain to understand and process the world around me.”

Each of us in visionhelp is honored that Chantal and Jeremy inscribed copes of their book to us, in recognition of the work that developmental and neuro-rehabilitative optometry does with individuals who are on the autistic spectrum.

Temple Grandin wrote the foreword to this wonderful book.  Here’s an interview that Chantal Sicile-Kira did with Temple to broaden awareness of A full Life with Autism:

- Leonard J. Press, O.D., FCOVD, FAAO

Lending Vision to April as Autism Awareness Month

Thanks to Dr. Lynn Hellerstein for her great blog, and the information on vision and autism, in honor of April as Autism Awareness Month.  Reading it was a reminder about a very informative article in 2009 in the journal Vision Research.

There are a bunch of other great things happening related to vision and autism.

Earlier this month, Dr. Carl Hillier presented an online course through momsfightingautism.com.

The Fortenbacher Production Group put together a wonderful YouTube video:

And coming up the first week in May, Dr. Nancy Torgerson is giving a seminar on Vision and Persons with Atypical Neurodevelopment, including Autism.

- Leonard J. Press, O.D., FCOVD, FAAO

The Rising: New CDC Report Estimates Autism Rate at 1 in 88

Latest update from the CDC regarding Autism.

There must be something to the rising.

http://youtu.be/eNnB4dkVRJI

The Rising, Bruce Springsteen

Can’t see nothin’ in front of me
Can’t see nothin’ coming up behind
I make my way through this darkness
I can’t feel nothing but this chain that binds me
Lost track of how far I’ve gone
How far I’ve gone, how high I’ve climbed
On my back’s a sixty pound stone
On my shoulder a half mile line

Come on up for the rising
Com on up, lay your hands in mine
Come on up for the rising
Come on up for the rising tonight

Left the house this morning
Bells ringing filled the air
Wearin’ the cross of my calling
On wheels of fire I come rollin’ down here

Come on up for the rising
Come on up, lay your hands in mine
Come on up for the rising
Come on up for the rising tonight

La-la, la,la, la, la, la, la-la …

Spirits above and behind me
Faces gone, black eyes burnin’ bright
May their precious blood forever bind me
Lord as I stand before your fiery light

La-la, la,la, la, la, la, la-la …

I see you Mary in the garden
In the garden of a thousand sighs
There’s holy pictures of our children
Dancin’ in a sky filled with light
May I feel your arms around me
May I feel your blood mix with mine
A dream of life comes to me
Like a catfish dancin’ on the end of the line

Sky of blackness and sorrow ( a dream of life)
Sky of love, sky of tears (a dream of life)
Sky of glory and sadness ( a dream of life)
Sky of mercy, sky of fear ( a dream of life)
Sky of memory and shadow ( a dream of life)
Your burnin’ wind fills my arms tonight
Sky of longing and emptiness (a dream of life)
Sky of fullness, sky of blessed life ( a dream of life)

Come on up for the rising
Come on up, lay your hands in mine
Come on up for the rising
Come on up for the rising tonight

La-la, la,la, la, la, la, la-la …

New Mexico’s Naturopathic Medical Show

Thanks to Dr. Curt Baxtrom for sharing the YouTube video of a very nice interview with Dr. Sam Berne, a behavioral optometrist in Santa Fe, New Mexico.  I had the pleasure of sharing time with Dr. Berne several years ago in Puerto Vallarta, Mexico, when we were on a lecture program together for COMOF.  The interview is wide ranging, and in watching it I was reminded how much Dr. Berne was influenced by his professional training at The Gesell Institute of Child Devleopment in New Haven during its halcyon days with Drs. Appell, Streff, and Sutton.  Dr. Berne has taken holistic care in optometry to new heights, as evidenced in this interview.  Enjoy!

- Leonard J. Press, O.D., FCOVD, FAAO

Visual Attention and Autism

What a magnificent job Dr. Rachel (Stacy) Coulter did in presenting her lecture on Autism at the COVD meeting last week.  Much of her presentation was drawn from an issue of Optometry and Vision Development on the subject of Autism that she coordinated.  I had the privilege of co-authoring an article for that issue, and forgot how much I enjoyed her article until I sat through the presentation.  Beyond what the 2009 article reviewed, Dr. Coulter reinforced the importance of interjecting affect into vision therapy with some great sample videos.  In terms of early detection, she updated what I had written with some preferential looking concepts that dovetails nicely with research being done at UCSD.  In addition, studies in the cognitive neuroscience of autism are adding to our understanding of problems in visual attention.  Of particular interest is the notion of “sticky attention”.  This encompasses the slow orienting of attention in space; the slow disengagement of attentiom; attention and eye movement; attention and coordinated movement.

- Leonard J. Press, O.D., FCOVD, FAAO

 

 

 

 

 

 

 

The Vaccine Controversy – Update

In a previous blog post I gave you a heads-up about an outstanding new documentary.  The Greater Good looks at the issues that polarize people into emotionally charged pro-vaccine or anti-vaccine camps with little room for middle ground. Exploring the cultural intersection where parenting meets modern medicine and individual rights potentially conflicts with the common good, this documentary brings together stories of families whose lives have been changed through the vaccine controversy, and the practitioners who stand by their concerns.  In reframing the vaccine debate and offering a rational and scientific discussion on how to create a safer vaccine program, The Greater Good challenges viewers to think again.  The DVD of the movie is now available, and for a limited time you can view it free online.

- Leonard J. Press, O.D., FCOVD, FAAO

It May Be Rocket Science After All …

A couple of months ago I blogged about duplex models of visual steams, the basic separation into a yin and yang of vision under different names.  If you’re enamored with neologisms, you’ll be drawn to a variety of terms that appear to introduce new concepts when in reality they’re re-packaging or only modestly extending pre-existing concepts.

More recently I made reference to researchers looking at what they term the PCR, or periphery to center ratio of the visual field.  Though it’s a bit of a re-package it is a very useful concept, not only with regard to dyslexia, but to visual processing styles in general.  The origin of this work is the Harvard-Smithsonian Center for Astrophysics.  In particular, Dr. Matthew Schneps began to speculate on why the preponderance of astronomers he knew were dyslexic, including himself.  This ties in to the idea that the Eides have helped popularize – that dyslexia might confer gifts or advantages that come with a utility cost in which reading is compromised.  But why?

This slide comes from a presentation by Dr. Schneps and his colleagues at the Laboratory for Visual Learning.  The two visual systems, constituting center and periphery, are contrasted in a fish-eye photograph of Harvard Yard covering 180 degrees in visual extent.  When you place your hand on a printed page and fixate the center, the visual angle is approximately 2 degrees.  The inset scales normally sized text to the visual angle subtended by your hand, when you fixate on the center circle.   If you extend your hand into the view of the yard, maintaining fixation on the center, the angle subtended is approximately 16 degrees.  The implication is that people differ dramatically in their proclivities for focused search tasks in the center of the field, vs. broad comparisons in the peripheral field, such as the wide expanse between the span of one’s hand and the rest of the scene in the yard.

Schneps and colleagues broadly categorize people into Low PCR, or Periphery to Center Ratio, vs. High PCR as follows:

The entire article in Mind, Brain and Education is worth reading: DYSLEXIA – VISUAL LEARNING & THE BRAIN – 2007

Though the authors acknowledge that it is difficult to precisely demarcate a center-periphery boundary, for the purposes of their discussion they characterize center as being within an 8 degree visual subtense, and outside 8 degrees as peripheral.  When conceptualized as separate systems, use of center vs. periphery introduces a trade-off between attention and working memory, broadly considered as visually sequential in the central field and spatially simultaneous in the peripheral field.  However, the key is attaining a healthy working balance between center and periphery depending on the nature of the visual task at hand.

The point here is that there is evidence that at least some people with dyslexia exhibit a visual bias favoring the periphery, characteristic of what they call a high PCR group.  For these individuals undergoing optometric vision therapy, emphasis might be made on become more efficient at visual processing in the central field.  So for example, with form fields, one would emphasize central fixation with awareness of the central portion and de-tuning the peripheral portion.

One of the newer modalities, the Sanet Vision Integrator offers the opportunity to manipulate divided attention, loading the center in favor of the periphery, with simultaneity in the center and scanning in the periphery.  This push-pull relationship between center and periphery, or the reciprocal inhibitory interactions, are deeply intertwined with attention mechanisms.  In addition, the central field is strongly associated with face recognition.  It is not difficult to see the extensions of the PCR theory to other clinical populations we deal with.  Though Dr. Schneps was struck by the skew toward dyslexia among his colleagues, it would not surprise me if those on the Autistic Spectrum are over-represented among his astrophysicist colleagues as well.  Understanding how we modify visuospatial performance may turn out to be part rocket science after all.

- Leonard J. Press, O.D., FCOVD, FAAO

The Vaccine Controversy

I respect Dr. Larry Palevsky, and from his email bulletin comes word that THE GREATER GOOD will be premiering in Los Angeles October 14 – 20,2011 and NYC  November 18-24, 2011.  Not that I want to get embroiled in the public health/vaccine controversy, but I do think it’s good for the populace to be informed about such matters.  This is clearly an issue that is not one of pure science and reason, but one that is overlaid with politics and big business.  I like the mantra of “show us the science, and give us the choice”.