Greetings again, Readers! My name is Tim Turner. I am a 36 year old autistic man from Texas who is currently working on 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 and being edited by Dr. Marc Taub. He is the editor-in-chief of the Optometric Extension Program Foundation’s academic journal (found at http://www.ovpjournal.org/ ).

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.

Welcome to the third installment in my series on vision therapy and autism.

Part 1 is here: https://corticalchauvinism.com/2018/02/12/an-introduction-to-vision-therapy-and-autism/

Part 2 is here: https://corticalchauvinism.com/2018/06/04/vision-and-the-link-with-poor-motor-skills-and-poor-posture-an-epidemic-within-the-autism-spectrum/

Before I begin, I must state that I speak mainly from my perspective as a mildly autistic person. I try as much as possible to reach both sides of the aisle as best I can. I support treatment to alleviate pain and suffering as well as efforts to eliminate grossly harmful things like self-injurious behaviors in autistic people of all functioning levels. I abhor treatments that involve physical and mental abuse or are harmful or deadly. The mitigation of my own occasionally debilitating impairments has made me develop a great amount of empathy for more severely impaired autistic people and their families.

My journey in vision therapy has made me rethink the very nature of autism itself. Vision therapy is not a cure for autism, but as I see it right now, I find myself in a unique and somewhat lonely position (perhaps only matched by John Elder Robison). I have gone far beyond the standard neurodiversity paradigm by undertaking vision therapy and mindfulness. I support and champion difference like the neurodiversity movement does, but my support and sympathy/empathy for the frustrated parents of severely impaired autistic people, autistic people who want a cure, and my advocacy for brain change makes me an outsider to most supporters of neurodiversity.

Here I will talk a little bit about primitive reflexes and their role in preventing the normal development of vision. I will also talk about a couple of ethical considerations surrounding brain change because it ties into eliminating disabilities such as retained primitive reflexes.

To the main point.

Recently, I saw that The Thinking Person’s Guide to Autism had featured an article by NPR (https://www.npr.org/sections/health-shots/2018/06/18/616805015/cutting-edge-program-for-children-with-autism-and-adhd-rests-on-razor-thin-evide) on both Facebook and Twitter talking about how Dr. Robert Melillo’s Brain Balance training for ADHD and autism were based on shaky science.

First things first, what Dr. Melillo did after the Parkland school shooting tragedy was very questionable and inappropriate given the situation at the time (plugging his Brain Balance program immediately after the tragedy).

Secondly, I tend to agree with parts of the article like the opinion of Dr. Mark Mahone on left vs right brain: “In virtually every activity that one does … both hemispheres of the brain are very, very active. … It’s not as simple as just being a left- or a right-hemisphere problem. Nothing is that simple.” In matters of the brain, nothing truly is that simple.

Thirdly – going back to the negatives – the greatest offender in this article is the author’s outright dismissal of retained primitive reflexes (potentially allowing harder-leaning neurodiversity advocates to dismiss the science and research behind them entirely). To quote a pediatrician in the article:

I cannot brook the overall dismissive attitude of the article. I have taken time out of what book editing I can do on my end to write this guest post.

Here’s where my personal experience and understanding play into primitive reflexes. Retained primitive reflexes do indeed play a role in cerebral palsy, but there has been a particularly interesting thread of research that also implicates their retention in neurodevelopmental conditions such as ADHD and autism. In 1998, a Dr. Phillip Teitelbaum noted that 17 infants who were later diagnosed autistic were found to display different ways of crawling, walking, rolling over, etc. during early infancy (based on observations from footage of these infants). In 2002, Dr. Teitelbaum followed up and found that primitive reflexes were present in subjects later diagnosed with Asperger Syndrome. Although the sample sizes were small, those are significant findings that warrant more reseatch.

What are primitive reflexes (also known as infant reflexes), you ask? Here’s a definition:

“Primitive reflexes are brainstem-mediated, complex, automatic movement patterns that commence as early as the twenty-fifth week of gestation, are fully present at birth in term infants, and with central nervous system maturation become more and more difficult to elicit after the first half of the first year of life, when voluntary motor activity and thus cortical inhibition emerges and takes over.” (Zafeiriou, 2004)

Primitive reflexes are not the enemy. They are there to help infants develop regular, voluntary motor skills. Most of the current understanding and research into primitive reflexes and their relationship with learning and developmental disabilities began in the 1960s. 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: http://suehyland.co.uk/ond/primitive-reflexes/

It was only years later after trial and error (plus some things beyond human control that prevented my first optometrist and his staff from spotting them) that my primitive reflexes were discovered in late 2012/early 2013. In my personal case, I retained three of them: the ATNR, the STNR, and the TLR. I’ll briefly mention some highlights of how they affected me.

ATNR: Made it difficult for me to coordinate the left and right sides of my body for binocular vision. I had a hard time telling left from right. It also more than likely played a role in the development of my aniseikonia (the image in my dominant left eye was bigger than the one in my non-dominant right eye).

STNR: Made impulse control very difficult without extreme mental force that completely drained my energy. Also made it difficult for me to hold my head in a proper position for binocular vision.

Then there was the TLR, the greatest offender in my lineup of primary motor dysfunctions/retained primitive reflexes. Remember when I talked about vestibular dysfunction in Part I? That was the handiwork of the TLR. Here’s an excerpt from Part I (so you won’t have to scroll back up and click on the link above):

    “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.”

The TLR allowed my abusers to inflict devastating damage on my psyche. The scars run deep and it’s taking vision therapy, meditation, and mindfulness a long time to heal them (although very successfully). One of the symptoms of having a retained TLR that shocked me the most was this note by Sue Hyland:

“Poor development of self identity, shy, tendency to be easily influenced by others.”

After I read this line on her website, I immediately understood why I had been so vulnerable to abuse and fell victim to the psychological manipulation of my abusers. Although I had developed a self identity and knew who I was between my late teens and early 20s, all of the neurological baggage of retained primitive reflexes made it impossible for me to sustain it. It also made my spatial awareness very poor.

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 was not enough to easily create change in my vision. I had secondary motor control problems that have lingered to this day (but the Egoscue exercises I mentioned in Part II are helping immensely). Having to rebuild my entire visual and motor control systems from the foundation up has been a monstrous undertaking.

Because I have integrated my primitive reflexes and am now out of much deeper disability, it saddens me when harder-leaning neurodiversity advocates say “We only want treatment to address our medical problems, not our autism!” Well, some of those medical problems are caused by retained primitive reflexes. Getting rid of them involves brain change. It’s either bury your head in the sand and yell “I’M FINE AS I AM!” and face an eventual catastrophic failure of some sensory or motor system, if it hasn’t happened already (vision in my case), or take a step and improve your quality of life, embracing at least some of that brain change.

In any case, it is incredibly difficult to see how deep your disability can cloud your world while you are immersed deeply within it. Those who rant in fear against brain change don’t know how deep they are in their disability. This is especially the case when they don’t realize that they don’t have the ability to feel or control their own bodies well (which is what primitive reflexes do to the brain/body connection). They have no idea how poor motor skills create poor social skills. Poor motor control can greatly inhibit the ability to acquire academic skills and destroys vision. I know this from experience. They also have no idea that changing motor habits is a form of brain change.

In my case, retaining my neurological baggage harmed that potential and talent that the neurodiversity movement loves to talk about. Right before the abuse really ramped up, I was successfully learning multiple languages at once: Spanish, French, Japanese, Mandarin Chinese, German, and Latin. My TLR amplified that abuse, which made my motor systems shut down and ultimately transferred to my visual motor system, causing catastrophic failure in my vision. I then went down to mainly one language out of necessity: French. It was thanks to the efforts and understanding of my French (and Spanish) professors at Lamar University and Texas Tech University that I was able to keep the language torch burning. Had it not been for them, I would have had a much harder time coming back to language study in the future.

Retaining primitive reflexes was like having a magnetic pole within my brain. What I wanted to do in life had the same magnetic polarity within it. The more energy I applied in trying to get what I want in that situation, the more I repelled what I wanted to do in life. Removing my primitive reflexes was like turning off that magnetic pole. Additional vision therapy combined with meditation and mindfulness practice is like changing to the magnetic pole that will attract what I want to do in life.

This is what I mean when I say that those who oppose brain-changing treatments such as vision therapy are inadvertent proponents of leaving oneself in a weak and vulnerable state (like retaining my TLR did). It’s also what I mean when I say that in order for the quality of life for autistic people to go up, that some form of brain change is necessary. Both my physical and mental health suffered tremendously. Unfortunately, the brain can have a way of adapting to pain even after catastrophic failure. An autistic brain can learn to ignore that pain incredibly quickly. But the pain will still be there in the background, gnawing away at the autistic person’s ability to navigate and live in the world.

(Here’s a curious side story that I will share about integrating my primitive reflexes. If you read Sue Hyland’s website, you will notice that the primitive reflexes basically destroy the ability to efficiently perform academic tasks such as mathematics. As my ATNR and STNR were integrating, I found myself at one point temporarily able to perform mathematics beyond algebra. I was able to follow and understand calculus for about 48 hours before the ability faded away because I still retained the TLR and secondary motor control problems as well as unresolved spatial reasoning and perceptual problems. I am curious as to what other potential lies beneath my disability. Only time will tell.)

As big of a proponent for brain change as I am, there are ethical considerations to make and questions to ask. Before anyone gets excited and rushes off to the nearest developmental optometrist’s office, I’d like to discuss not only the benefits, but some of the bumps in the road with brain change when it comes to autism.

First of all, you must ask yourself: “Am I doing this treatment because I want myself (or my child) to not suffer from sensory or motor impairments so that I can take care of myself ( so that my child could take care of themselves)?” If so, then those are very good reasons. I have no doubt that most frustrated and exhausted parents of more severely impaired autistic people (or autistic people who want a cure) fit into this category.

As an example, the mother of a nonverbal autistic girl (who communicates with typing) recently told me on Twitter that her daughter has had much success with prisms. She told me that her daughter told her that her thoughts can focus much better while wearing prisms (which often elicit brain change). That’s a very clear-cut ethical use of brain change. Who wouldn’t want an autistic person to be able to think more clearly and more quickly?

The other question that someone might ask when considering brain-changing treatments might be about addressing certain behaviors. What kind of behaviors are we talking about? If it’s self-injurious behaviors such as hitting one’s head against the wall, then yeah, brain change is definitely ethical here. Inappropriate behaviors such as smearing feces? Definitely ethical, too. Nobody’s arguing against helping behaviors like that, especially in more impairing autism (unless someone actually believes that if society were just more accepting and accommodating that they wouldn’t be disabled).

But what about a kid who reads too much about the weather? What about a kid who spends too much time playing with computers? What worries me the most is that the quest to mitigate and eliminate disability will unconsciously turn into one that seeks to suppress more positive autistic traits and behaviors such as hyperfocus (which ties into extreme interests). As someone who endured extreme mental and emotional abuse over my interests in anime and manga, I get incredibly upset when interests are heavily pathologized. As I said in my free speech essay, I believe that people can say or do what they want to do as long as nobody gets injured, killed, harassed, defrauded or abused in any egregious or malicious way and as long as the property of others isn’t being damaged or destroyed.

(I won’t go into detail about my abuse, but the very basic version of it was my former abusers telling me that I was “too obsessed with and too greatly attached to anime and manga.” Therefore, I had to stop watching and reading so much and diversify myself. This resulted in nearly seven years of misery.)

In many ways, I think that society is becoming too strict in addressing behaviors like interests. Unlike many neurodiversity advocates I’ve seen, I don’t believe that society is some monolithic beast that seeks to oppress autistic people at every opportunity, but I believe it’s rather a collection of individuals who may or may not react positively to certain autistic behaviors. I will get to more detailed writings on my viewpoints on society and disability in the future, but for now I must work on tying up loose ends for my book and getting it published. That’s a psychological weight on my shoulders that I must cast off. For a basic idea of my attitudes on society and disability for the time being, all you need to do is listen to John Elder Robison’s lecture called Organic Education: An Idea Whose Time Has Come (link in sources below). I know that some of you are thinking in terms of “What about school learning? Everyone who has to go to school has to learn a variety of subjects! They could be so engrossed in their interests that it would keep them from learning other things.” I don’t doubt that possibility, and I believe that autistic people should be well-rounded and learn skills like reading, writing, basic skills in math, handling money well, plus critical thinking. However, I feel that modern education is becoming detrimental to the well-being of autistic people in general (and even neurotypicals). Again, specific ramblings on that are for future writing.

Another ethical consideration for brain change lies in those neurological transitions I’ve mentioned before. Whether it be from vision therapy, mindfulness, meditation, or TMS, neurological transitions are one of the most fascinating, yet frightening parts of brain change.

(Refresher from Part I – Download and read the article on neurological transitions by the optometrist Dr. Jeffrey Getzell here: http://www.ovpjournal.org/uploads/2/3/8/9/23898265/getzell16.pdf)

Neurological transitions are times of intense emotional upheaval or numbness. I have experienced them due to the combined effects of vision therapy and mindfulness. I will save more specific details about what they did to me in my upcoming book, but I can tell you that article had a laundry list of the things I had been experiencing: achiness of the body, nausea, lethargy, headaches, emotional touchiness, emotional numbness, etc. Dr. Getzell also said that unresolved emotional conflicts come to the surface and manifest as the brain undergoes change.

Want examples of neurological transitions? Just read about the intense mood swings into mental darkness that John Elder Robison describes in Switched On or his feeling of loss of self in his October 2, 2008 blog entry called Brain Plasticity and How if Affects Us (found here: http://jerobison.blogspot.com/2008/10/brain-plasticity-and-how-it-affects-us.html ).

That description above has uncanny similarities to times I have undergone neurological transitions (and I still encounter them today). At those times I felt like that I wasn’t myself and felt that I was somehow losing my love of Japanese animation and manga. But like John Elder Robison, I found my way back to my passions and interests. (Before I began undergoing even more serious neurological transitions in early 2016, I asked John Elder Robison on Twitter once if he had lost his interests due to TMS, and he said no.)

How did I manage? Simple. My core traits associated with milder autism were what they were and remained intact. Like my mother (who happens to have normal vision), I can spend vast amounts of time alone, happy in my own company and dedicated to whatever I hyperfocus on. I can go very long amounts of time without needing contact with others. Attention to detail? Intact. All those positive traits the neurodiversity movement likes to associate with autism remained intact. Whenever I felt extreme depersonalization or de-egotization (that is, not feeling like myself), I stopped vision therapy, relaxed my efforts in mindfulness, and rested a lot. It’s not a good idea to push any more brain change while this is happening. If possible, one should take care of oneself to the exclusion of everything else. I curled up with hot tea and bed rest with the help of blackout panels over my window to not only help my sleep, but also shut out as much sensory stimulation as possible. Once I felt the feelings of extreme de-egotization and depersonalization subside, I meditated on positive feelings that I had of my past before the abuse scarred my psyche.

Another example of a neurological transition that affects behavior is in the NPR article itself.

“The mothers began observing changes in their older son. They say his previously weak sense of smell suddenly blossomed, first for brownies and then other foods. And he became less obsessed with characters he had repetitively sketched in his notebooks and imbued with rich inner lives. (His parents are torn as to whether this was a positive development.) He also advanced in certain Brain Balance measures, including his primitive reflexes.”

Before I continue, notice how that the excerpt didn’t say he stopped being obsessed. It said that he became less obsessed. That’s a softening of a trait due to brain change, not an elimination. Reading something like that could scare harder-leaning neurodiversity advocates into thinking that inhibiting primitive reflexes is either a way to change someone’s personality into a neurotypical drone or a way of suppressing autistic traits (or to dismissing such treatment as quackery).

That said, that NPR excerpt is one reason that we should be very considerate about how we handle interventions in autism. It’s one thing to worry about a child not making a lot of friends and give him or her the help they need to successfully navigate the social world (or even become able to pursue interests that might help with socialization in the first place), but a remote possibility of hampering the development of any future potential is also there. Judging from the excerpt, the parents saw that potential harm.

Ethically, we can see from the NPR example the consequences of not being fully informed about the possible side effects of brain-changing therapies. Consider then, a parent who too forcefully wants their child to do better (or change) and pushes him or her to keep doing the brain-changing therapy in the middle of a neurological transition. I would venture to say that it wouldn’t end well, and I know because I’ve done it to myself. It’s very counterproductive and actually delays positive effects. It’s best to get plenty of bed rest with as little sensory stimulation as possible.

That being said about neurological transitions, mindfulness and meditation are not without their potential problems. In fact, I have found in doing more research for my book that the signs of brain change brought about by mindfulness and meditation are nearly exactly the same as the signs of neurological transitions from vision therapy: occasional brain fog, emotional conflicts come forth (especially in the case of PTSD), emotional touchiness or numbness, etc. Read about potential hazards of meditation here: https://mentalhealthdaily.com/2015/06/17/dangers-of-meditation-list-of-possibilities/

Always make sure that you have a support system with experienced professionals (as well as that core support from family and/or friends) and that whatever you’re doing is appropriate for your situation. Always seek proper medical advice and guidance.

This is not to discourage anyone to seek help for vision and motor problems (which are ultimately affairs of the brain), but it should be known that brain change is not as simple as one would think. Whoever chooses to seek vision therapy (or any other brain-changing treatments) needs to know that it’s not a straight shot to clear vision and smooth sailing. It can be as challenging as it is rewarding. Without the proper support system, though, brain change either will ineffective or possibly even negative.

And what about the panic over altered basic thought patterns and processes being destroyed through brain change? Nothing but a baseless, irrational fear. You want to know how I know that? My mother, my maternal uncle Greg and his daughter, my cousin Lauryn, have the same types of thought patterns I do. We all tend to focus on details before assembling them into a bigger picture. My mother, Uncle Greg and Lauryn all have normal vision. I still think in this basic fashion, but I come to the bigger picture much faster than I used to thanks to faster cognitive speed.

On the outside, I appear to act somewhat differently than I used to. I’m much less jittery around strangers. I can make small talk with much greater ease. I even occasionally get in the mood to join in conversations with my family in large gatherings. I don’t stim as much as I used to anymore because my brain is more aware of where it is in space that it used to be (stims aren’t really an immutable trait). I also don’t stim very much anymore when I’m anxious. I usually only rock back and forth when I’m incredibly happy or excited now (happy stims). Eye contact is also much easier because I don’t have painful spasms from poor motor control as much as I used to.

My Uncle Greg recently told me that he has noticed lately that I am acting more like who I was before the abuse. “I can’t quite put my finger on it.” He told me. “It’s like you’re a lot like your old self plus some.” My parents and close family have noticed this, as well.

My personality has become more finely adjusted as I’ve undergone vision therapy. It’s changed but yet in many ways it’s stayed the same. I feel more and more like who I was before the cloud of darkness enveloped my life. I also feel more and more like I deserve to be happy. Brain change enabled me to feel that old happiness without the wastefulness and vulnerabilities that come with retaining primitive reflexes. At the core, I remain the same.

In any case, should we make efforts to get rid of primitive reflexes when they remain past their time? Undoubtedly yes! If an autistic child retains primitive reflexes (especially the TLR), it will do far more harm than good! If certain types of brains are prone to certain types of disabilities (such as retaining primitive reflexes) then we should do everything we can to help. Imagine how great it would be if a more severely impaired autistic person lost their cognitive fog and gained communicative skills. It would seem like a dramatic personality change. Whether it be independence or talent that lies below that cognitive fog, it is worth the efforts in research to unearth them. Whether it is mild autism or more severely impairing autism that prevents an autistic person from being independent, there needs to be more cooperation between professions to solve unique problems in enabling autistic people to reach their potential and gain independence. Vision therapy is a powerful tool in mitigating and eliminating disability, but when it comes to autism, it faces the same clinical trial design problems that TMS has recently faced. This is more than likely due to the unique problems in the many possible subtypes of autism that exist. A multi-disciplined approach has been suggested in optometry journals, as well.

To put brain change in a simpler perspective, the late Dr. Robert Kraskin, an optometrist who was an advocate of using prisms to transform the vision and lives of people who had problems interpreting their spatial and temporal perceptions, asserted that vision therapy could help to create “a more effective behavioral computer.” It doesn’t mean anything in the sense of coercing someone into behaving differently, it means making a person a more efficiently functioning and learning being.

Whether it’s in the form of TMS for successfully helping milder forms of autism (discussed here: https://corticalchauvinism.com/2017/02/27/thoughts-on-transcranial-magnetic-stimulation-and-autism/) or prisms in the case of vision therapy (documented for both verbal and nonverbal autism in Part I), there’s no putting the genie back in the bottle. Tools and other devices of brain change are already here. I understand that there is a lot of fear over brain-changing therapies, but one must overcome their fear of it because others will use them to their advantage. Doesn’t it make sense that we should start talking about the ethical considerations of brain change, so that parents and autistic people who want a better life for themselves don’t desperately rush in without knowing the potential consequences and risks?

I should wrap up here. It’s one thing to use it to help an autistic person be free of cognitive fog and other negative aspects that come with autism, but it’s another thing entirely to use it as a way to attempt to force change on autistic people. I can tell you, though, as a mildly autistic person who has experienced brain change firsthand, that it doesn’t magically change an autistic person into a neurotypical social butterfly who will die if he or she isn’t around other people for 5 minutes. Brain change does not work that way. When it comes to gifts and talents that the neurodiversity movement cherishes, brain change doesn’t really affect those gifts. In my case, it is actually expanding my overall potential and reclaiming my lost potential. At any rate, I wouldn’t have considered vision therapy worth it had my synesthesia disappeared. It’s still there.

I think that not embracing some degree of brain change is to miss out on great opportunities in life (and greater health), especially if primitive reflexes are retained. They contribute a lot to pain and suffering, plus they destroy the ability to socialize easily.

Brain change is an awesome force that shouldn’t be trifled with. Everyone with a stake in autism (whether it be mild or severe) needs to keep that in mind.

Until next time, take care!

Special thanks and acknowledgement to Twilah Hiari for giving me something to think about on Twitter when it comes to personality change and brain change. Her input allowed me to further refine my own thoughts somewhat on the subject. I’ll continue to think about it as I progress in vision therapy and mindfulness.

And as always, Dr. Casanova has my deepest gratitude for letting me voice my experiences here. I’ve learned much from him, and I hope he has learned much from me. I look forward to more mutual learning.