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.

Anomalous Correspondents

Many blog entries can be found on our site regarding the continuum of stereoscopic binocular vision.  I’ve also written a number of times about how eye muscle surgeons (pediatric ophthalmologists) tend to judge the success of their surgeries by how straight the eyes look after surgery.  How comfortable or efficient or binocular the patient is remains an epiphenomenon of sorts.  Jeremy’s mom was talking to a friend of hers whose daughter has an eye turn partially compensated by glasses, and had undertaken vision therapy with us with great results.  Despite the fact that Jeremy had eye muscle surgery, this mom felt she could still tell that all was not as good as it could be.  Sometimes it takes a year or longer to develop good binocular vision, but when Jeremy’s parents brought him to us we felt that we could accomplish our goals within a six month period of time.  We agreed that if additional time were needed, we’d cross that bridge later.  Well today marked Jeremy’s completion of his weekly optometric vision therapy visits, and he did beautifully.  At the outset he lacked any stereopsis, local or global, and demonstrated intermittent suppression with considerable binocular instability.  His surgeon told Jeremy’s mother to stay away from vision therapy because it might cause double vision.  She consulted with two other pediatric ophthalmologists who were also dismissive of any further intervention.  Don’t get me wrong:  pediatric ophthalmologists are superb at what they do well, which is surgical re-positioning.  But to find a pediatric ophthalmologist who understands the role of optometric vision therapy is almost an anomaly.  Yet they exist.  In fact in a new textbook just out, a chapter on multidisciplinary care finds one of its co-authors (an ophthalmologist) noting that vision therapy is typically not part of their training, and a potential benefit that should be left to the professional judgement of the optometrist.

Back to Jeremy, and the beautiful Success Story his mother gave to us today.   Her correspondence is anything but an anomaly.  It’s typical of what patients encounter when they and their parents work hard with our talented staff.  Here’s what Jeremy’s mom wrote:

“So many changes.  Jeremy had surgery to straighten his eyes about 4 months before we began vision therapy here.  His eyes were practically straight but I could see that he was still alternating, using one at a time.  I had that sense, rather.  After a couple of months of vision therapy, I started to see his eyes “locking” on me some of the time, and I realized that I really could tell when he was using them together (eye teaming) and when not.  Most important, I began to notice that his eyes were teaming more and more until now it’s just about all the time.

 

 

About 3 months in to therapy Jeremy went to a 3D movie & reacted just as his twin brother did.  He could not have appreciated 3D before.  Also, Jeremy used to cover one eye when he was tired, and did so more at certain times during vision therapy but I have not seen him do this for 2-3 months – at all!  This is a huge relief because I worried about him having eye strain or double vision. 

So I am absolutely thrilled and grateful to this incredible team of people led by Dr. Press – the surgeon said vision therapy would do nothing but I know she was wrong.  I am so glad that we made the  commitment to this program.  It has take away what could have been a disability for Jeremy.  The team communicates superlatively with one another and with parents.  Everyone is so pleasant & helpful.  Jeremy likes coming.  It has been an incredibly positive experience.”

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

Switch: A Pace of Change

You can learn something about visionhelp.com docs by visiting our website, where you’ll see the descriptor that we meet regularly to share experiences and discuss the latest developments and best practices in our specialty fields of vision development, therapy and rehabilitation.

It’s been a tradition for lots of years now that we gather for a couple of days once yearly, immersed in a theme that we use as a lens or prism to explore changes that can accrue to the benefit of our patients.  This is aside from the interaction that we have regularly through email and professional association meetings.  This year’s theme is taken from the book Switch, quite fittingly a study of change. itself.

As our practices have collectively evolved to become more specialized, patients who come to us through referrals or by word of mouth are individuals suspect for having visual adaptations or compensations in need of change.  Accomplishing change, however, is much more difficult than it might seem on the surface.  As related to vision there are many potential obstacles, for example:

1) Not recognizing that issues one is dealing with are related to vision.

2) Having been told that one’s vision is normal or fine because eyesight has been measured at  20/20.

3) Being conflicted about undertaking change because of perceived time constraints or other tensions or concerns including juggling other commitments.

One of the imperatives of Switch is to find the bright spots.  So many of the patients who come to us have been defined by what is lacking that we have to re-dedicate ourselves to focusing on the bright spots as a starting point.  What is your understanding of the issues?  What interventions have been tried before?  If vision therapy is indicated and deferred, what alternatives will you pursue to gain meaningful change?

If vision therapy is prescribed, one of the imperatives of Switch is to concentrate on the pace of change rather changes of pace.  Find small, meaningful, attainable steps for each patient, and pursue them with determination.

Though there are key metaphors about change involving elephants, riders, and paths, this coming weekend will ultimately find us once again focused more broadly on how these principles can effect change within our practices and for our patients.  To locate and implement these changes involves, among other things, teamwork, innovation, and creative vision.  It is vision, after all, in which we specialize.

- 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

Why Watch Titanic 3D Without 3D Glasses?

James Cameron’s Titanic in 3D broke all records for box office openings in China, and is doing quite well worldwide.  What do you notice about the picture below, a double page front and center spread in the April 23 issue of TIME magazine, showing moviegoers in the Chinese province of Shanxi watching Titanic 3D?

Right, there’s glare on the page.  But that’s only because I couldn’t find a clean version of it on the Internet.  What I really want you to notice is that there are three people within the first three rows who aren’t wearing their 3D glasses.  Spoofs aside about the super 3D effects of the film, how is it that James Cameron spent $18 million and over a year in production meticuloulsy re-doing the film into stereoscopic 3D, frame by frame, even aligning the stars just right to satisfy an astrophysicist, and some moviegoers would not appreciate the effort?  We know, courtesy of the work of Dr. Martin Banks and colleagues at UC Berekely College of Optometry, that where you’re sitting in the theater affects your S3D viewing experience.  But is there more to it?

The AOA and the ophthalmic industry is paying close attention to how moviegoers and consumers of entertainment in general are responding to 3D media.  If you’re a moviegoer watching this heralded film and you have as sinking feeling that something is wrong with your perception, it may be because you’re experiencing one of the 3Ds of stereoscopic 3D viewing: discomfort, dizziness, or lack of depth.  One way to cope is to simply watch without the 3D glasses – but the experience is clearly not the same and most likely is out of focus due to the effects necessary to create 3D-ness for your moviegoing neighbors.  So it’s a tradeoff in what makes you more uncomfortable: unstable or absent 3D viewing through the glasses, or ghosting without the glasses.  More than an inconvenience, people with unadressed binocular vision issues are making compromises in activities of daily living – many of which aren’t readily apparent.    Specialized lenses, prisms, or optometric vision therapy can help binocular vision difficulties at any age.    It takes motivation and persistence, but it all begins with discovery of the problem in the first place.

- Leonard J. Press, O.D., FCOVD, FAAO

Visual Spatial Attention Deficits Can Impair Reading Acquisition

This man is brilliant.  His name is Dr. Harold Solan.  We’ve mentioned him before in the context of visual attention and reading.  He was inducted into the  National Optometry Hall of Fame in 2003 in large measure due to his body of work showing that visual attention is not only an essential reading readiness skill, but is responsive to therapeutic intervention.  He has directly mentored me and Dr. Tannen and Hong in visionhelp, but has indirectly influenced every developmental optometrist and many thousands of patients.  His chapter, Models of Reading Disability and Their Implications in Hung & Ciuffreda’s Models of the Visual System is among the seminal works published on vision and reading.  I was delighted to learn from a colleague this evening that Solan’s work on visual attention and reading has been directly supported by a new study from Andrea Facoetti’s lab in Italy.  Here is a nice UPI summary of the implications of Facoetti’s research:

PADUA, Italy, April 8 (UPI) — Researchers in Italy said they found a causal connection between early problems with visual attention and a later diagnosis of dyslexia.

Andrea Facoetti of the University of Padua in Italy and colleagues Sandro Franceschini, Simone Gori, Milena Ruffino and Katia Pedrolli assessed children before they were taught to read for visual spatial attention — the ability to filter relevant versus irrelevant information — through tests that asked them to pick out specific symbols amid distractions.

The children also took tests on syllable identification, verbal short-term memory and rapid color naming. The children were tracked for the next two years for measures of reading, Facoetti said.

The study, published in the journal Current Biology, found the test results showed children who initially had trouble with visual attention were also the ones to later struggle in reading.

“Visual attention deficits are surprisingly way more predictive of future reading disorders than are language abilities at the pre-reading stage,” Facoetti said in a statement. “Because recent studies show that specific pre-reading programs can improve reading abilities, children at risk for dyslexia could be treated with preventive remediation programs of visual spatial attention before they learn to read.”

The complete citation for the journal article is:  Franceschini S,  Gori S, Ruffino M, Pedrolli K, Facoetti A.  A causal link between visual spatial attention and reading acquisition.  Current Biology 2012;22:1-6.

The paper concludes:

“Overall, our results demonstrate for the first time that independently of speech-sound perception, as well as nonalphabetic cross-modal mapping skills, visual attentional functioning predicts future reading emergence and development disorders. These findings virtually close not only a long-lasting
debate on the causal role of visual spatial attention deficits in dyslexia but also open the way to a new approach for early identification and more efficient prevention of dyslexia.”

The type of RAN (rapid automatized naming) and serial search activities utilized in this research lends even further support to the significance of attaining mastery on vision therapy procedures such as Hart Chart Saccades and Michigan Letter Tracking, as we’ve alluded to before.

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

 

A Sheep in Wolves’ Clothing

I just finished doing an evaluation on a 14 year old girl whose mother is a COTA – a Certified Occupational Therapy Assistant.  This young teen is very bright, but works incredibly hard to get Bs  in school.  Her mother loves to read, but her daugbhter struggles with anyting in print.  When listening to others read she grasps things perfectly.  Mom had attended a seminar I gave almost a year ago that discussed, among other topics, the difference between ophthalmology and optometry, and how most ophthalmologists poo-poo the relationship between vision and learning beyond eyesight.  Some ophthalmologisgts will acknowledge that convergence insufficiency can make reading more challenging, but if a child wants to succeed she will.  So mom was very specific that although there were both ophthalmologists and optometirsts in this practice, she wanted to see the optometrist.  At the end of the examination the doctor advised mother that everything was fine with her daughtger’s eyes, other than she needed a little help seeing the board.  She gave her a prescription for low nearsighted power.  It turns out that this young girl is actually a bit farsighted, even more so with drops in her eyes to relax her focus.  Not surprisingly, she resists wearing her glasses.  But that’s not where the story ends.  Mother specifically asked the doctor how her daughter’s binocular vision was, and the doctor said “Her eyes are fine”.  Mother, after having attended my course, knew enough to do a nearpoint of convergence (NPC) screening.  Her daughhter struggled mightily to converge, but couldn’t look at the target within the reading distance because it physically hurt her eyes to keep it single.  So mother again asked the doctor the question, being even more specific this time about having testied her convergence abilities.  This time the doctor was even more emphatic in her reply: “I told you, other than being a little nearsighted, her eyes are fine”. 

As it turns out, this teen’s eyes are fine.  It’s her vision that’s a problem.  She has a significant convergence insufficiency, as mother had properly detected on screening.  In a stereoscope test she uses both eyes together beautifully at distance where she sees, by the way, 20/20 letters without glasses.  But at near she experiences a double vision response because of her underconvergence.  In an objective test of reading, using the Readalyzer eye movement sensors, she visibity struggled to track effectively.  When I reviewed the findings with mom and daughter, they were relieved but pertrurbed.  Mom said to me: “I’m a COTA.  I know what to look for.  But what happens to a ‘regular’ parent?  I would have felt initmated by the doctor if I didn’t know in my heart that something was wrong. I can’t even discuss this with my husband,  because he knows the optometrist said everything is fine and he feels our daughter is just being lazy.  But I know her well and she is capable of so much more.  I hate to sit by and watch her settle for less, and I’m not goiing to do it any longer.”

We had a brief discussion about how some optometrists, particularly if they work in an ophthlamology practice, learn to adopt the mindset of their employers.  They lose sight of the role of vision in learning, and poo-poo anything beyond the need for glasses, medicadtion or surgery.  In essence, they become sheep in wolves’ clothing.  Then mom asked me a question I really couldn’t answer: “Why does it have to be this way?”

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

A Ruede Re-Awakening

A. D. Ruedemann, M.D. enjoyed an illustrious career as an ophthalmologist, spearheading the Department of Ophthalmology at The Cleveland Clinic in the 1920s, then founding the Kresge Eye Institute at Wayne State University College of Medicine in the 1940s.  Known to his colleagues as “Ruede”, he loved to debate and make clear to the audience his position on controversial subjects.  Ah, a man after my own heart!  Some years ago I recall my good colleague and friend, Dr Bob Sanet, mentioning a Chairman’s Address that Dr. Ruedemann presented before the Section on Ophthalmology of the American Medical Association in Chicago on June 12,1956.  The title of the presentation was Foveal Coordination and the Learning Process, which doesn’t do the contents of the address justice.  It was published in the Kresge Eye Institute Bulletin, Volume 8, Number 1, 1957, pages 4-10.  It seems fitting that Ruede’s middle name was Darwin, as this presentation is nothing less than an evolutionary insight into what ophthalmology once appreciated as the totality of the visual process but has long since abandoned.  Here are some key quotes from that presentation:

“It has been nearly two centuries since that charlatan Taylor started us off on the wrong foot, or perhaps the wrong eye, by cutting eye muscles.  Since that time ophthalmologists and the medical people interested in ocular motility have thus been muscle inclined.  This has been a serious handicap because it has led people away from the basic physiology in the mental process of seeing.”

 “Seeing must be learned and the process must be developed by constant trial and error.  The grades of intelligence in sight are just the same as they are with intelligence in any other subject or any other process that we learn to do.  When we measure vision we obtain the present visual intelligence level of that individual.”

“The attempt to correct this faulty positioning of the foveas by way of the extraocular muscles leads to the many failures we have seen over the period of years, where only cosmetic results have been obtained and the individuals have been made more uncomfortable by trying to find a new position for their foveas.  Actually, it usually requires further teaching for the fovea, proper correction of the mechanical defect underlying it and sometimes an interruption of the faulty eye-brain pattern already established.”

 “The anatomical changes that we find in the eye muscles are minimal and only in rare instances are they of any importance in the total picture.  Most of these patients have learned to coordinate their eyes incorrectly and they are just as deficient in their incorrectness as they should have been in the correct method of using them and unless the correct method is taught to them, one cannot effect a cure”.

“Further, when one lacks binocular fixation one must increase the arc of vision by the use of the neck muscles; they are the binocular fixators for the eyes, and occassionally because of faulty fixation of the local extraocular muscles, the neck muscles are called upon for extra duty and one has an acquired faulty position of the head.  This fautly position of the head is further compensated by a faulty position of the shoulder and an acquired scoliosis; the entire muscular mechanism of the body is concerned.” (my emphasis added)

“Again I will state that muscle surgery is not the answer.  We have demonstrated this to our own satisfaction when we raised our end results froma low percentage of 18 per cent success to one of over 70 per cent in the overall picture of functional results.”

“This entire process commences with the proper laying down of the grey matter of the brain, the early stimulation of the fovea, and the early visual requirements with stress on accommodation and the lens, and the need for the development of the proper extraocular muscles, neck and back muscles so that the eyes can be maintained with the exactness that is required for the business of walking, living, and seeing.  There is no other special sense as important in the entire living process as that of proper sight.  The responsibilty belongs to the medical ophthalmologist and we cannot shirk our duty.”

In the year 2012, fifty-six years after he gave this presentation admonishing his colleagues, were Dr. Ruedemann to return to the podium he would likely chastise his fellow physicians for shirking their duty.  Nature abhors a vacuum, and developmental optometrists have stepped in to provide the care that he rued might be lost.   Some ophthalmologisgts still have trouble accepting that fact; it is a Ruede re-awakening.

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