My story: Asperger’s, aka. autism, and vision therapy

My name is Timothy Turner (Tim is fine). I am a 37-year-old American who was diagnosed with Autism Spectrum Disorder five years ago. If I had been diagnosed before 2013, my diagnosis would have been Asperger’s Syndrome, but the DSM 5 eliminated it as a diagnosis. With that out of the way, I will also say that I only speak from the viewpoint of a person who was diagnosed with mild autism. I can offer little in the sense of more severe autism, but I will be talking about some cases of more severe autism being helped by vision therapy.

I am also currently working on a book manuscript that describes my journey out of Asperger’s Syndrome with the help of vision therapy and additional therapeutic measures. I say that because I know that I have progressed enough to probably lose my diagnosis at this point, despite some lingering visual symptoms which I will eliminate in the future.

I hope that my story with vision therapy will create some hope for everyone who has a stake in autism. I don’t have a timeline for when my book will be ready for publication, but I will talk about these basic things in the meantime:

1.) Basic visual symptoms in autism
2.) What vision therapy is
3.) What vision therapy isn’t, and complications in autism that make vision therapy challenging
4.) A few success stories (along with links to the books/webpages they are included in)
5.) Vision therapy resources available in the UK

I will also provide further reading resources when appropriate because it’s important that you read things for yourself (plus I don’t want to write another book in itself from all that I could talk about).

Without further ado, let’s begin.

Visual problems in autism – more than meets the eye

It’s often not discussed or thought about in daily discussion of autism, but a significant proportion of the autistic population has a large number of visual problems. They manifest in a variety of ways that are often not obvious to the casual observer, such as:

1) Hypersensitivity or hyposensitivity to visual stimuli
2) Poor ocular motility (ability to move the 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 (inward or outward turn of one eye relative to the other)

Between 20 – 50% of people with autism have some visible form of strabismus. Studies and writings by the late Dr. Bernard Rimland and the optometrist Dr. Melvin Kaplan (and others) confirm this. I personally suspect that the rate is actually much higher because strabismus can be intermittent and people don’t catch eye turn as easily as optometrists/ophthalmologists can. Sometimes, though, strabismus can be so subtle that it can be incredibly difficult to spot, even for professionals.

“What about surgery?” you may ask. “Doesn’t that fix misaligned eyes?”

No. The vision therapist Lora McGraw wrote that “we don’t ‘fix’ a crossed or crooked eye” through means like surgery because surgery doesn’t address the underlying neurological causes, plus a surgically corrected eye will often return to a deviated position. Surgery addresses cosmetic issues only and does nothing about visual or brain function. My first developmental optometrist told me that surgery (especially multiple surgical operations) can scar the nerve and muscle tissue of the muscles that control eye movement, making any potential for recovery of normal visuomotor function progressively impossible. Surgery should never be the first resort to treating misaligned eyes.

This is where the underlying neurology of vision and vision therapy come into play.

Neurological underpinnings of vision problems in autism

Vision therapy is a specialized therapy in the field of optometry (often referred to as behavioral or developmental optometry) that uses a variety of exercises and tools such as prisms to aid in the mitigation of visual symptoms of not only people with autism and other disabled/special needs populations, but also people who have suffered strokes, traumatic brain injury, etc. I have also supplemented it with some extra therapeutic measures, but I am doing more research into how they work. For now, I will briefly discuss the basics and some challenges to success in standard vision therapy for people with autism.

In order to have efficiently functioning vision, the brain has to quickly and unconsciously take three factors into account during each moment:

1.) What is it? (focal vision) Central vision has more to do with identifying objects within the environment itself.

2.) Where is it? (ambient vision) Peripheral vision helps a person to guide movement and deal with changes in the environment and context at any given moment.

3.) Where am I? (ambient vision) Just as important as “where is it?”

Two types of visual processing: Focal and Ambient vision

When most people think of vision, they think in terms of going to an optometrist’s office to get a prescription for glasses in order to see clearly. This is called focal vision, which is one of two domains of vision that most people are familiar with. However, it only concerns the central two degrees of a person’s total field of vision. Focal vision is involved with the identification of objects, people, etc.

Ambient vision and special orientation – source of confusion and disorientation in autism

As you have read above, there is a second domain of vision called ambient vision (also known as 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.

Ambient vision is unconsciously learned in the early stages of human development, and as you can guess, people with autism have many problems unconsciously learning this domain of vision. This puts people with autism at a huge disadvantage early in life, because deficits in this become an unconscious source of confusion and disorientation, as well as general stress. Furthermore, stress in general can result in even further impaired vision.

The late optometrist Dr. Albert Sutton noted that stress causes a person to see less, which in turn affects memory and learning. You can only imagine the snowballing of problems that this stress does with compounded impairments in people with autism.

You might have noticed earlier that the overall balance is more in favour of ambient vision than focal vision. Those who have peripheral vision problems have been found to have a greatly diminished capacity to pay attention to visual input and sustain performance on tasks for long periods of time. In certain capacities, prisms can help to remedy this problem, but vision therapy can help to make improved peripheral vision permanent.

Things at the heart of autism: Motor control and perceptual problems

There are many speculations on why autism arises, but science has been slowly uncovering the mechanisms behind autism. Much of the research I have encountered in the course of finding corroborating evidence for my book has suggested that motor control and perceptual problems have a lot to do with it. In other words, it’s more of a software problem than a hardware one. It’s like a computer with incomplete programming that limits hardware function.

For example, with a case study of infantile autism, the optometrists Drs. Leonard Press and Jack Richman noted that:

“A visually impaired infant may not have normal eye contact and may seem to look at the hair of the adult because of the more obvious contrast with the background, as compared to facial features.”

It is important to note, however, that a newborn infant does not have a fully developed focal vision system at birth. This is because the fovea centralis (the place in our retina responsible for the clearest central vision) is not mature at birth and takes several years to fully mature (although it usually has its full structure at around 15 months of age). It may be that infants with a tendency to later develop autism keep focused on the first details they can discern in their environment.

Drs. Press and Richman discuss in a case study a four-month-old girl diagnosed with infantile autism who had a tendency to not make eye contact, but developed a normal social smile and made eye contact after lenses were put on (after a few seconds of surprise). You can read the full case study paper here.

A case like this emphasizes the importance of catching autism as early as possible to have optimum outcomes.

Vision therapy for autism: challenges and drawbacks

It is not a magic bullet

That said, vision therapy is not a magic bullet that works overnight. Even as someone who was diagnosed with mild autism, I have sometimes found myself having periods of rapid progress followed by occasionally long plateaus. There are also periods of brain change where mood can swing rapidly and deep fatigue can set in, called neurological transitions.

You can read about neurological transitions by the optometrist Dr. Jeffrey Getzell here.

Finding a good practitioner is hard, and not cheap

There are challenges to be met, as well. One of them is a shortage of optometric professionals who are able (and in some cases, even willing) to treat autism. There are hundreds of thousands to millions of people with autism out there who could benefit from vision therapy, but only so many developmental and behavioral optometrists. Another challenge is that there is a need for optometric professionals to combine their expertise with that of others outside their field to make vision therapy even more effective. Then there are other reasons like time, distance/travel to the clinic, cost (without health insurance, I paid between $100 to $125 for each session), etc.

Read about this issue here. And here.

Other underlying problems, like primitive reflexes, might stand in the way of progress

Other challenges include underlying motor control problems. One of them I encountered along the way was what are called primitive reflexes. All human beings are born with a set of these involuntary reflexes which pave the way for learning voluntary movement. But if they are retained past a certain age, they become a detriment to vision and the ability to navigate the world properly.

In developmental optometry, five of these reflexes are implicated in the inhibition of the development of mature visuomotor skills. They are:

1.) The Moro Reflex
2.) The Asymmetrical Tonic Neck Reflex (ATNR)
3.) The Symmetrical Tonic Neck Reflex (STNR)
4.) The Tonic Labyrinthine Reflex (TLR)
5.) The Spinal Galant Reflex

You can read about how they manifest differently in older developmentally disabled people in depth on the website of Sue Hyland, a holistic therapist from the United Kingdom who has decades of experience working with these reflexes.

You can also read about primitive reflexes and autism in a book entitled Envisioning a Bright Future by Patricia Lemer (Amazon UK link provided below).

Further reading: A guest post entry about primitive reflexes I wrote for the American autism researcher Dr. Manuel Casanova.

Fortunately, a vision therapist or a specialist such as an occupational therapist can help eliminate the presence of primitive reflexes and their related health problems with varying levels of success (this is a process called integration or inhibition, which is carried out through specialized exercises). With the elimination of the primitive reflexes comes the set of more mature postural reflexes which replace them. Getting rid of primitive reflexes paves the way for greater neurological improvements overall.

Conclusion: promises, caveats and challenges

Despite the challenges, it’s not to say that some success can’t be had. For instance, pioneering optometrist Dr. Melvin Kaplan once put high diopter prisms on a non-verbal autistic girl. She immediately stood up, began walking around the room, then started dancing while uttering expletives. When it came time to remove the prisms, she held onto them and screamed “My eyes! My eyes!” You can read about it in his book entitled The Secrets in Their Eyes (an Amazon UK link is provided below, along with another book by Dr. Kaplan entitled Seeing Through New Eyes).

In The Secrets in Their Eyes, Dr. Kaplan also tells a story about how he used yoked prisms on a mostly nonverbal autistic boy named Justin. At first, he hardly uttered a word and had trouble interacting with people and objects. After having yoked prisms put on him, Justin began to take more interest in people and respond appropriately to their presence. He also developed language. All because he could pay better attention to the environment and people.

Here, you can find a 1994 case study of vision therapy by the optometrist Dr. Nancy Torgerson. This paper describes how a nonverbal autistic girl gained some ability to use the language after a regimen of vision therapy with the use of yoked prisms coupled with visual exercises.

Dr. Torgerson also took on another case using yoked prisms to help a 16-year-old with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified) make huge gains in stereo vision within a year, although there still remained some overall visual problems.

Although there has been a great success in treating many cases of autism with vision therapy and yoked prisms, Dr. Kaplan issued a caveat: even though yoked prisms can induce immediate and profound changes in behavior, those benefits are temporary. He states that they are only a tool to induce a change in behavior to be “captured” and built upon by therapy. It takes a sometimes large amount of therapy to fully integrate these temporary changes in perception into permanent neural function. It has also been noted by Drs. Marcy Rose and Nancy Torgerson that not all autistic people are readily helped by yoked prisms. Even when effective, it may take months or years of wearing the prisms to encourage satisfactory neurological change.

Conclusions drawn from my personal experience of vision therapy for autism

As you can see, you must temper your expectations with vision therapy, especially in the beginning. It bears repeating that it is not a magic bullet that works overnight and it will take time for the treatment to be fully effective. Even someone who has had mild autism like me can take a while to have vision therapy fully work for them. I’ve often heard that it usually takes between 6 and 18 months for vision therapy to work on a typically developing person. For autism, there is no set time frame because of the vast amount of complications that can arise in autism. However, a great amount of gain can be made in the first year of vision therapy for someone on the autism spectrum. I can vouch for that with personal experience.

That’s why I’m taking time to finish vision therapy properly and make my manuscript as clear as possible. I hope that my journey in vision therapy will serve not only as a roadmap for people with mild autism to find their way out of the labyrinth of disability but as something that can provide clues to help those with more severe autism find their way to a life more fully lived.

Clear, functional vision is the birthright of every human being. It need not be taken away by disability.

About the author

Timothy Turner on himself: “I am a 37-year-old American who was diagnosed with Autism Spectrum Disorder five years ago. If I had been diagnosed before 2013, my diagnosis would have been Asperger’s Syndrome, but the DSM 5 eliminated it as a diagnosis. With that out of the way, I will also say that I only speak from the viewpoint of a person who was diagnosed with mild autism.”

Further reading on visual processing issues in autism and vision therapy

Behavior Through a Lens, by Dr. Melvin Kaplan

Interview with Dr. Melvin Kaplan, by Dr. Stephen Edelson

Understanding the Visual Symptoms of Individuals with Autism Spectrum Disorder, by Dr. Rachel Coulter

Books on vision therapy and autism from a clinical/professional perspective

Seeing Through New Eyes: Changing the Lives of Children with Autism, Asperger Syndrome and other Developmental Disabilities Through Vision Therapy, by Melvin Kaplan

The Secrets in Their Eyes: Transforming the Lives of People with Cognitive, Emotional, Learning, or Movement Disorders or Autism by Changing the Visual Software of the Brain, by Melvin Kaplan

Envisioning a Bright Future, by Patricia S. Lemer

UK Vision Therapy Resources

UK Vision Therapy Directory

Eye Care Trust, a UK-based eye chartity

H Kahan Opticians, based in London

Adult and Children’s Opticians, based in Cardiff

Paul Adler, based in Stotfold and St. Albans

Keith Holland Opticians, based in Cheltenham

Keith Murphy Opticians, based in Kenilworth

Vision Care Development, based in York

Vision Care Optometry, based in Castleford