Greetings, Readers of Cortical Chauvinism!
My name is Timothy Turner (Tim is fine). I am a 36 year old autistic man from Texas who is currently editing the manuscript of my upcoming book about my life with Asperger’s and how vision therapy has changed (and continues to change) my life. Vision therapy is a specialty within optometry that consists of physical exercises and the use of devices such as prisms that help with vision problems that are often present in autism. I don’t have a time frame for its release, but the manuscript is currently under science review.
My primary interests are Japanese animation (anime) and its comic book equivalent of manga. I also like languages and linguistics, computer science, developmental optometry, video game speedrunning and mindfulness. I have a bachelor’s degree in French, a master’s degree in French and a second master’s degree in applied linguistics.
Where to begin? Since I’ll be talking a little bit about my upcoming book in the context of my autism, let me start out with some basic facts. According to the research I’ve come across for my book, vision problems are incredibly common in autistic people. The most common ones are:
1) Hypersensitivity or hyposensitivity to visual stimuli
2) Poor ocular motility (ability to move eyes to do things like track objects with the eyes alone)
3) Poor spatial awareness
4) Poor integration of all the senses
5) Poor integration of central and peripheral vision
6) Refractive problems that cause blur (nearsightedness, farsightedness, etc.)
7) Strabismus (an inward or outward turn of one or both eyes)
One major thing I’d like to start with is the poor integration of central and peripheral vision in autistic people. In order to have efficient vision, the brain has to quickly and unconsciously take three factors into account during each moment:
1.) What is it? (focal vision/central vision) Central vision has to do with seeing the outcome of events and with seeing static objects within the environment itself.
2.) Where is it? (ambient vision/peripheral vision) Peripheral vision helps a person to guide their movement and deal with changes in the environment and context at any given moment.
3.) Where am I? (ambient vision/peripheral vision) Self-explanatory. This is just as important as “Where is it?”
When most people think of vision, they think of going to an optometrist’s office to get a
prescription for glasses. This has to do with what is called focal (or central) vision, which is one of two domains of vision that most people are familiar with. However, central vision only concerns two degrees of a person’s total field of vision. Focal vision is involved with the identification of objects, people, etc. Autistic people can often have no problem knowing what objects are but can conversely have a hard time interacting with them. In other words, we have no trouble seeing an object itself.
This leads me to the next aspect of vision. Unknown to most people is a second domain of vision called ambient vision (also known as peripheral or instrumental vision), which a person uses to figure out where they are in space and is used by the brain to give rise to depth perception. Most autistic people fail miserably in this domain of vision. If you don’t know where you are in space, it can have detrimental effects on your social interactions and your behavior. In other words, focal vision alone is not enough to interact with the world.
As I understand it (and experience confirms it), most autistic people rely solely on focal vision to gather information the world. Another thing to note is that some autistic people tend to use their peripheral vision more than their central vision. In my case, I switched between the two (which is also another possible vision scenario in autism). For someone who is mildly autistic like myself, relying primarily on focal vision worked for a very long time. That came to an end in late 2006 when my vision catastrophically failed at the age of 25, making academic work and other tasks like driving so much more difficult. It has only been years of effort from vision therapy that I have been able to better integrate my central and peripheral vision. This previous July marked the return of my vision to its pre-catastrophic failure state.
In fact, fully effective central vision is not possible without fully developed peripheral vision, which is rendered impossible by a condition known as strabismus (Greek for “squint”). As stated earlier, strabismus is an inward or outward turn of one or both eyes (usually just one). I had an inward turn for most of my life up until a few years ago. It then became intermittent and is almost entirely gone today. A 1999 study by Drs. Melvin Kaplan, Bernard Rimland and Stephen Edelson (someone who was recently featured on this blog) estimated that up to 20% of the autistic population has some form of strabismus. Since strabismus can be intermittent, I think that even more autistic people than what they estimated have strabismus.
This is where my story begins in the book. I talk about how my both my maternal and paternal family display traits (both positive and negative) of the broad autism phenotype. When I was a child in the 1980s, most signs of autism appeared at around a child’s second or third birthday. My strabismus became fully apparent around the time I turned 3 years old. Glasses helped for a long time until the catastrophic failure of 2006. My book covers the time between my childhood and adulthood, documenting many things I experienced as an autistic person and noting how my sensory dysfunctions played a role in social interactions over time. Another thing that I’m putting in my book is how I actually had and maintained a friend my age from third grade to the present day; a rarity in autism narrative, it seems. This friend displayed traits of ADHD, so our differences drew us together and formed a tight bond that continues to this day.
Another factor played a role in the failure of my vision, which was mental and emotional abuse. For nearly seven years from early 2004 to late 2010, I was mentally and emotionally abused over my greatest interests of anime and manga. This was coupled with some conditions that accompanied my autism that I like to call “neurological baggage” that made my catastrophic failure inevitable. This included a neuro-visual condition called aniseikonia. This curious condition caused the perceived image from both retinas of my eyes to be different in size, preventing me from from pointing each eye at the same point in space. As a consequence, I didn’t know where I was in three-dimensional space. Fortunately, vision therapy has exercises to correct it.
The biggest offender in the neurological baggage lineup, however, was vestibular dysfunction that affected my balance and even amplified the abuse I underwent. In fact, I was prone to psychological manipulation because of these vestibular system problems. A 1979 paper entitled Primal Terror: A Perspective of Vestibular Dysfunction by a Dr. Martin Shaffer on vestibular dysfunction sums up how poor understanding of and control over one’s own body due to vestibular dysfunction can lead to devastating results in interpersonal relationships. Dr. Shaffer’s observations echoed many parts of my life. In that paper, he invites the reader to imagine what laughter directed at a toddler with vestibular dysfunction can do to him or her during a critical point of socio-emotional development. The child then experiences bodily tension, resulting in confusion and anxiety among other psychosomatic results. Anything negative (or perceived as such) will lead the child to believe that he or she is stupid and lead to further anxiety and tension. The end result is a dysfunctional person who is hypersensitive to everything and remains vigilant for any potential threat in order to retain of some form of psychological homeostasis. This constant stress also interferes with overall sensory and motor function. This was my life from childhood, when my peers mocked and ridiculed me, to amplified abuse during my early adulthood.
Fortunately, I had a moment of clarity that triggered the beginning of the end for my abuse. Some time after that, one of my vision therapists spotted the telltale signs of neurological baggage. I was eventually able to work out of the neurological baggage with therapy. Now that my vestibular dysfunctions are gone, I am far less prone to psychological manipulation and can stand my own ground even when my emotions are tense. Even though I have eliminated all of the neurological baggage that my optometrists, vision therapists and I have managed to find, I’m still dealing with cleaning up the nasty neurological mess of what it all left behind after running roughshod over my brain for all this time.
It’s all a shame because my brain is packed with potential. I began teaching myself Japanese at the age of 15 and was really good at it. That was derailed by many personal developments that led to my abuse and therefore the catastrophic failure of my vision. A torch for my language talent was kept burning thanks to the gifted help of my French professors, but I have had trouble getting to the point of learning several languages at once like I was doing before the abuse. I have shown a lot of promise in other fields, too, but my visual disability has prevented me from being able to acquire skills efficiently. Sometimes I feel like the author Sloane Crosley, whose quote I read in an optometry journal:
“I was diagnosed with a severe temporal spatial deficit; a learning disability that means I have zero spatial relations skills. It was official: I was a genius trapped in an idiot’s body.”
Thanks to the abuse I endured, my talents and potential were nearly fully lost. The abuse turned me into that genius in an idiot’s body. I’m still fighting to get all of it back. Vision therapy will get me there. At the time of this blog post, I am still doing custom vision therapy at home.
Make no mistake, I’m going to turn my life around.
Another exciting thing I’ve found is how my experiences and some of the findings of developmental optometrists have matched up with some of the findings of Dr. Casanova. Finding Dr. Casanova’s blog and reading his descriptions of interoception helped me find the scientific literature necessary to add substance to my upcoming book.
On a related note, one of the experiences I talk about in my book is how I used mindfulness (an interest I share with Thomas Clements, a.k.a. “The Autsitic Buddha”) to develop interoception. In an ironic twist to my life, one of the people who played a large role in the mental and emotional abuse over my primary interests of anime and manga introduced me to mindfulness. Years later, I “dusted it off” after the anger from PTSD settled and began to use it in vision therapy.
In his 1988 book entitled Vision Enhancement Training, the optometrist Dr. Albert Shankman talks about the importance of persistence in developing self-awareness and self-observation, which I liken to mindfulness as I have learned it. Here’s a quote from that book on it:
“If he [the patient] is persistent, and keeps trying to be aware, it will become an action he will learn to do automatically and unconsciously.”
Most people tend to think of mindfulness in the context of meditation. I learned about it much differently. Mindfulness is not just meditation. It is a tool to take with you and use everywhere. Here’s a quote about mindfulness from my upcoming book:
“The goal of mindfulness is just to be in the present moment as much as possible. I’m not talking about a guided mindfulness meditation session that you do while sitting in a yoga pose during a break from work while listening to a babbling brook or something like that. No, I’m talking about a portable kind of mindfulness that you can take anywhere and can use at anytime and in any kind of situation.”
It’s also amazing to see how Dr. Shankman described interoception in basic detail in the 1980s. In Vision Enhancement Training, he hints at interoception and its potential in vision therapy:
“The skill of self-awareness is not easily achieved. But the more sensitive one is to what is happening
in one’s own body, the greater is the skill of solving problems.”
A really funny thing is that as my brain develops a more accurate picture of my body through interoception, the more three-dimensional the external world looks. My cognition is also a lot faster, enabling me to guess possibilities in social situations (this was also thanks to the help of yoked prisms). Thanks to me improving my interoception, I found out that I was unconsciously straining my legs and tearing up my knees without knowing it.
Switching gears a little, another similar experience in autism treatments that are out there that I have undergone came in the form of neurological transitions. John Elder Robison’s Switched On has some places that eerily parallel my experiences in vision therapy: being extremely touchy, anxious, fearful, etc, all easily triggered by external events. John Elder Robison was experiencing Cubby’s trial (among other new life experiences) during the period of the TMS sessions which ignited the emotional powder keg within him. Mine was ignited by post-traumatic stress and deep regrets. Any little thing could set off extreme emotions. I owe John Elder Robison a great debt of gratitude for sharing his experiences because I thought I was the only one going through extreme emotions during brain change.
You can read about neurological transitions by the optometrist Dr. Jeffrey Getzell here: http://www.ovpjournal.org/uploads/2/3/8/9/23898265/getzell16.pdf
Vision therapy isn’t a cure for autism, just like TMS isn’t. In my case, vision therapy has been a very effective treatment. Some might respond well while others won’t respond at all (again, just like TMS). It has has been used to varying levels of success with both verbal and nonverbal autistic people. This is probably because the etiology of different types of autism (suggested by DNA studies) can play a role in the outcome. I will point you to some of the more successful nonverbal cases.
This is a 1994 account of successful nonverbal autism cases by Drs. Marcy Rose and Nancy Torgerson. One of their case studies, known as BG, gained some expressive language after being mostly nonverbal. http://oepf.org/sites/default/files/Vision and Autism Rose Torgerson.pdf
This is a partially (yet in some aspects very) successful case (PDD-NOS) handled by Dr. Nancy Togerson circa 2009. https://covd.site-ym.com/resource/resmgr/ovd40-3/article_insightsdiagnosis.pdf
There are other cases of the success of optometric vision therapy with nonverbal autistic people reported in the literature of Dr. Melvin Kaplan. Dr. Casanova has done some studies with Drs. Kaplan and Stephen Edelson on the effectiveness of yoked prisms (also known as ambient lenses) in treating visual problems associated with autism. Dr. Casanova also wrote the foreword to Dr. Kaplan’s most recent book called The Secrets in Their Eyes.
You can also read about vision therapy from the clinical perspective in Dr. Kaplan’s book entitled Seeing Through New Eyes.
(Interesting note: Dr. Kaplan emphasizes breathing just like Thomas Clements does in The Autistic Buddha and Yuval Levental mentions in this Cortical Chauvinism guest post: https://corticalchauvinism.com/2015/01/14/visualizing-neurodiversity-breathing-for-treatment/ )
From all the research I have done, my vision therapy and autism book will be the first one told from the first-person perspective of an autistic person. I still feel the same at the core, but I feel like my brain’s capabilities have been expanded and added onto. I still display autistic traits, but they have expanded in their expression and softened some. I’m still wrapping my head around all of this brain change. My brain is beautiful, but it needed some help.
That’s enough for now. I’ll stop here before I beat myself up over every detail. My sincerest thanks goes to Dr. Casanova for posting this on his blog. Think of this as the first in a very small series of posts on vision therapy and autism. Through the encouragement of Thomas Clements, I have submitted an essay to Quillette magazine where I talk about how free speech in autism discourse changed my stance on neurodiversity from a fairly hard position to a much softer one. Please keep an eye out for it.