Able Is Not a Bad Word (Or How I Learned to Stop Worrying and Embrace Brain Change).

It’s been nearly two weeks since the #AutisticDarkWeb hashtag began on Twitter, and the response to my free speech essay has been overwhelmingly positive.

(EDIT TO ADD: I’m more than somewhat regretful being incredibly confrontational by adding the hashtag to my profile. Regardless, I stand by my position as an advocate for treatment in autism and I remain sympathetic to frustrated parents and caretakers of profoundly disabled autistic people. My viewpoints still make me a heretic to the neurodiversity community. I still follow the hashtag, though.)

However, it’s already beginning to come to the attention of the wider neurodiversity community. Here I will try to make my position very clear.

First of all, I AM NOT opposed to all of what the neurodiversity movement has to say. I don’t think that the neurodiversity movement is entirely full of crap, but there are (understandable) misunderstandings and fears of brain therapies within it.

Secondly, I AM for treatments that enable autistic people to live more independent lives and bring out their inner potential. I AM NOT for treatment that includes physical or mental abuse or harmful/deadly treatments such as bleach enemas.

These two viewpoints are not 100% mutually exclusive. Even other people who use the hashtag agree with me.

I hope to further elaborate on this in the future because there’s a lot of ground to cover.

That said, the very hard truth is that for the quality of life for autistic people to increase, there has to be some degree of brain change.

My journey in vision therapy and mindfulness has made me rethink the very nature of autism. One of the main things I have come to notice is that character and personality traits associated with autism are not in themselves good or bad. They often manifest as good or bad depending on one’s environment. I’m talking about traits as described in Broad Autism Phenotype (BAP) research. Family members of autistic people often display similar personality traits. However, they are qualitatively milder. Hyperfocus and the propensity to be alone by oneself are very common in both my maternal and paternal families (keep this mind for later in the essay).

My mother often likes being alone and concentrating on genealogy. She can spend hours upon hours researching family history. She has told me that she can be fine in her own company for much longer than typical people can, but she does seek interaction with other people. Yet her vision is normal.

My father often seems stoic and aloof at first glance to someone who has just met him, but he is someone with immense emotional depth. He does not open up quickly to other people. My father also likes to spend a lot of his spare time focused on personal projects around the house, many of which involve extreme planning and problem solving. My father’s vision is normal, as well.

These personality traits and behaviors of my parents (which I have a double dose of) don’t interfere with their personal responsibilities. They rarely interfered with my responsibilities as a graduate part-time instructor at Texas Tech University (the longest I’ve ever held down a job, which was 5 years). They only began doing so during the final year I was there when I began to have extreme meltdowns beginning in October 2013.

What I’m getting at is that I did not start vision therapy to eliminate my autistic traits (because I didn’t know about my autism when I began it in 2009). After learning about my autism in 2014, I took some time to analyze what I was doing to my brain in light of vision therapy. This was slightly before I learned about the neurodiversity movement. After I did learn about the neurodiversity movement, questions and concerns about how I would potentially be harming my gifts and potential stuck around for a while until I ultimately came to this conclusion:

I am doing vision therapy so I can read better, be more able and claim the life I have always wanted.

Let me explain something here. “You’re fine as you are” doesn’t 100% jive with reality, even in cases of mild autism with loads of potential like mine (in that case, maybe 85-90%; mileage may vary with more severe autism). If I had taken that to the extremes, as some more dogmatic neurodiversity advocates appear (keyword: appear) to profess, I would have just rolled over and been fine with having multiple problems: poor posture, poor gross and fine motor control, stiff flexibility, vestibular system dysfunction, and aniseikonia (a neurovisual condition in which the perceived image from each retina are different in size).

Don’t even get me started on how that translated to poor visuomotor skills. Tell me, was I fine as I was when it constantly felt like someone was trying to rip my eyeballs out their sockets, or that when it felt like someone is pouring gasoline on my eyes and brain and lighting it on fire? That’s exactly what my untreated autism was like. That’s what happened in 2006 when my vision catastrophically failed due to underlying conditions that accompanied my autism.

Recently, there have been neurodiversity advocates who have lashed out against treatments such as transcranial magnetic stimulation (or TMS) because of the fear of brain change. There are also more radical neurodiversity advocates who say that there is no such thing as treatment that respects autistic ways of being. I’m not going to name any of these people because I don’t want to appear to be singling out anybody. I want to build bridges.

In any case, those who rant against treatments like TMS that involve brain change (which includes treatments like vision therapy) have no idea what they’re talking about. Dyspraxia and motor control problems shouldn’t have to be permanent if there is a way to help mitigate or eliminate their symptoms.

As I said earlier, I don’t think that the neurodiversity movement is entirely full of crap, but there’s a bit of cognitive dissonance going on when proponents say they want something like “We only want co-occurring conditions to be cured!” especially in the case of dyspraxia (which is almost universal in autism).

You don’t know how deep you are in your disability when you don’t realize that you don’t have the ability to feel or control your own body well. You have no idea how poor motor skills create poor social skills. Poor motor control inhibits the ability to acquire other skills and destroys vision. I know this from experience. You also have no idea that changing your motor habits is a form of brain change.

Those who rant against some form of brain change are attacking something that they neither understand nor have firsthand knowledge of. Let me tell you about one of many periods when my interoception vastly improved in scope.

While my parents were on vacation last October, I had a full week to myself while I watched the house for them. I was in the middle of writing the first draft of the manuscript of my book when I felt that I should go out to get something to eat. I went to the local Wal-Mart to get some snacks to go with my dinner while practicing feeling my body as I walked around in a real life environment (as opposed to training in my house or at the local track).

Everything seemed normal as I practiced feeling my body when all of a sudden, my vision expanded to encompass more than my usual field of vision. Times like this still shock me to some extent, but I’ve learned to maintain my cool whenever it happens thanks to mindfulness. As I let the feelings of simultaneous bliss and anxiety wash over me, I encountered a guy standing where I needed to go. As he turned to face me, I could “see into” him to such a degree that it was surreal for me.

“Oh, I’m sorry.” he said as he smiled at me.

“It’s no problem at all.” I smoothly responded.

“I was taking too long.” he said.

“Everything’s fine.” I reassured him.

In all of the simplicity of this interaction, I personally couldn’t believe how I was handling all this. What’s more is that during this I was able to maintain a large degree of eye contact without pain (and without faking it by doing something like looking at the guy’s eyebrows). Normally, pain and spasms that came with eye contact situations elicited either confusion or hostility with other people. This time, a much more friendly response came.

I thought that the entire interaction was a fluke until the next day, when I went to go get more groceries at a different store. I went to the bakery/confectionery section to get myself a tiramisu dessert. As I was looking at the other sweets and contemplating whether or not to buy another dessert for the next night, a lady working there approached me.

“Can I help you find something?” she asked me.

From out of nowhere, I made humorous small talk.

“Oh, I’m sorry. I didn’t mean to drool on everything you have to offer. I can’t decide.”

The lady smiled and I told her that I was deliberating on further purchases after deciding on something already.

I was incredibly puzzled after this, even after multiple encounters where I have always gotten friendly responses out of nowhere from strangers. I feel the same at the core even though my ability to interact with a wider range of people is still expanding to this day.

A big question that I ask myself often is “If certain types of brains are more vulnerable to disability, shouldn’t we be looking at ways to prevent the worst from manifesting? To give the more disabled among us a greater shot at fully living life?” I also ask myself “Shouldn’t we be looking for ways to mitigate or eliminate disability as early as possible in life?”

Those who attack something they don’t understand (such as brain-changing treatments like TMS and vision therapy) are inadvertent proponents of leaving oneself in a weak and vulnerable state, left far behind by their peers. I want none of that. I want my potential to come out and shine.

Those who don’t embrace brain change have no idea of what they’re missing out on.

I am against any therapy that forcefully or coercively tries to manipulate behavior or make autistic people “indistinguishable from their peers.” Vision therapy doesn’t do that. Mindfulness and meditation don’t do that. Judging from what I’ve read in John Elder Robison’s Switched On, TMS doesn’t do this, either.

Believe me, I know what it’s like to have people coercively try to change the very way you think and act. For nearly seven years, I was abused over my greatest interests of Japanese anime and manga. This greatly wrecked my personal trajectory in life. What made it hard for me to recover in life after the fact was disability that made it next to impossible to quickly switch gears (or even do the things I have always wanted to do on the side).

I stand to think that most able-bodied people want the best for the disabled. Sometimes they are not perfect in their execution of helping disabled people. I see this in the writings of autistic people who underwent Applied Behavior Analysis (ABA), scarred by their former experiences while being ignored by its proponents (EDIT TO ADD: I’m well aware of the whole debate over ABA and how various therapies can be called ABA, that’s a whole other beast that I’m too exhausted to delve into right now).

One last thought before I wrap up is about a memoir I recently read called The Neuroscientist Who Lost Her Mind: A Tale of Madness and Recovery by the world-renowned Dr. Barbara K. Lipska who works as a schizophrenia researcher at the National Institute of Mental Health (NIMH) in Washington D.C. To quickly summarize the book, Dr. Lipska had metastasized melanoma in her brain and when she underwent immunotherapy to treat it, her brain swelled almost uncontrollably. This caused her to display symptoms not unlike those displayed in extreme cases of dementia and schizophrenia.

I didn’t suddenly become someone else. Rather, some of my normal traits and behaviors became exaggerated and distorted, as if I were turning into a caricature of myself.” Dr. Lipska wrote in an article for the New York Times in 2016. She repeats this idea in her book a few times. It somewhat parallels my brain change just like many brain change side effects mentioned by John Elder Robison in Switched On paralleled my experiences in vision therapy.

Whatever is there in autism that is disabling, it also exaggerates personality traits. I still value great amounts of alone time today, but I now want to experience more. I have lessening chronic pain that keeps me away from people and drains my interactions with them. In other words, my autistic traits were made into caricatures of themselves.

Tell me, what’s wrong with wanting to eliminate that pain that might rob a few extra moments with people I love or my friends whom I want to be around (or having the extra energy to deal with other people outside those groups)?

I can tell you as an 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. It does, however, greatly expand your ability to relate to other people (even some who quite aren’t like you). Brain change need not be radical like the case of Phineas Gage who got an iron rod through his brain in the 19th century (although there is some evidence that he recovered greatly after a stay in Chile). Like the ideas of Roger Kulp I presented in my free speech essay, autism treatment does not destroy who you are as a person. I am still the same person at the core with my autistic personality traits and behaviors intact, but softened in expression.

Wanting the best life possible for autistic people is not ableist.

Thinking that autistic (and other disabled) people are “less than” or a burden solely in terms of money is ableist. I stand to think that people like that are rare.

There is nothing wrong with wanting to to mitigate or eliminate disability.

There is nothing wrong with wanting to be able to do more.

Being able is not a bad thing.

Able is not a bad word.

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The Importance of Free Speech in Autism Discourse and Beyond: A Curious Case for Compassion and a Stepping Stone to Finding Your Place in the World

Note: For clarity’s sake, the “hard” position of neurodiversity is one that opposes any form of treatment or even the possibility of a cure for autism. I have seen neurodiversity advocates from time to time say things like “There is no such thing as therapy for autism that respects autistic ways of being.” The “soft” position is one that recognizes that autistic people (and autistic traits themselves) have value and contribute to society, yet recognizes that autistic people can have varying levels of disability ranging from mild to severe. Many autistic advocates – even those of the very public face of the neurodiversity movement – are a mix of these two positions to varying degrees.

This essay is about how I came from a harder leaning position on neurodiversity to a very soft one thanks to the beauty of freedom of speech. Although I’m going to talk about free speech from a largely personal perspective, which is limited in itself, I hope to illustrate at least a little bit of the grand nuance that the realm of free speech entails. Free speech is an extremely nuanced thing that can be at odds with our human nature, yet we must have it and use it if we as a species are to go through the current growing pains that we are currently undergoing.

Free speech is a very precious freedom that’s not only very easy to lose, but very easy to curtail for others on a conscious or unconscious level. At the same time, people tend to have a distorted view of what it actually is. In a clichéd fashion, people will say things like “I have a right to say what I want.” What I’ve noticed as of late (not only in autism discourse, but the public arena in general) is that there seems to be a lot of people who say this with an air of “I’m 100% right and you’re 100% wrong” and “Why won’t you take my side, you idiot? I’ve presented evidence for my case. Why don’t you understand? Adopt my position right now!

The I’m 100% right and you’re 100% wrong” mode of thinking is very toxic and is the reason that not only autism discourse is so polarized today, but society in general. People from all walks of life go into the world seeking to either consciously or unconsciously persuade their opponents into thinking like them. Even if they’re aware of their own biases, they forget that they may tend one way or another to unconsciously try and force or otherwise convince people to “join their tribe” or adopt their viewpoint one hundred percent. Sometimes if the other side doesn’t heed their words, then some of those deliberately (or inadvertently) coercive people could come to believe that some kind of force will be necessary whether it’s some form of social pressure or coming up with some kind of law that can be used as a weapon against the group that’s guilty of wrongthink or thoughtcrime to make those guilty people think like them. In the process, the coercive party thinks that they are either saving or changing society. In response, the group (and in some cases, an individual) being attacked understandably goes on the defensive and can often fight with the same I’m 100% right and you’re 100% wrong” mindset. Oftentimes insults get hurled and snark ensues. People walk away either smug in their victory or bitter in their defeat. The reality is that it’s a stalemate most of the time. Nobody wins and society at large loses, especially when an individual’s liberty gets trampled. Everybody gets out of bed the next day and starts the next round in the never-ending war on the other side. Ever mindlessly and frantically responding to viewpoints we don’t like or experiences we haven’t lived that we personally find bizarre or not to our taste, we human beings are explosively reactive creatures.

In light of that, I think that the free speech crisis of today stems not from speech itself, but from the very human problem of the lack of perspective taking regardless of neurotype. There is a horrible stereotype that autistic people lack the ability to place themselves in the shoes of other people. This is a very wrong and dangerous notion. One extreme example of my deep empathy for others is that I’ve writhed in pain for days at a time from hearing stories of the suffering of other people that they truly didn’t deserve. All too often, autistic people get the blame for not taking the perspective of others and can be punished for thinking and behaving differently even when those thoughts and actions aren’t something that results in someone getting hurt or property being damaged. Not seeing an autistic person’s perspective doesn’t help neurotypicals, either. But because they’re the majority, they often get a pass on it. Even so, I fully believe that the free speech crisis is an empathy and compassion crisis deeply rooted in the inability to imagine the other side’s perspective.

I’ll be upfront about my stance on freedom of speech and its related concept of freedom of expression. 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 wicked way and as long as the property of others isn’t being damaged or destroyed. I vehemently oppose any limitation on someone’s right to say or do what they want through coercion or extreme pressure. I am a staunch individualist who believes in the maximum amount of sovereignty possible for the individual. Why? Because for nearly seven years from early 2004 to late 2010 I was mentally and emotionally abused over my very special interests of Japanese anime and its comic book equivalent of manga. There was more that I was abused about, but what made me happy the most (outside family and friends) was what suffered the most. For those seven years, my individuality was suppressed and I became a shell of a human being. There were many times when my former abusers didn’t even have to directly abuse me because my inner self-critic that their abuse fueled did the abuse for them. To this day, I still suffer from lingering PTSD and have nightmares and panic attacks inspired by those seven most miserable years of my life.

Why bring up something so personal in an essay related to free speech? Because free speech concerns not only the public sphere (where most of the attention is focused), but also private life. Both of these realms affect each other. This is important because free speech can be liberating. A very personal instance of seeking the other side of the story resulted in me being freed from the very degrading (and occasionally dehumanizing) abuse I endured. Here’s an excerpt from the manuscript of my upcoming book about it:

In April of 2010, I began to have some moments of clarity in my judgment through the sensorimotor fog that clouded my ability to see the abuse I was undergoing. In one such moment, I recalled a couple of my abusers at one point in the past talking to each other maliciously about someone they had known for a while. After recalling that conversation, I decided to seek out some of the people they had been talking about. In a stroke of luck, I found one of them: a woman named Darya. What she said opened my eyes to how wicked this small band of “friends” was.

She wrote: ‘That particular man and his friends have been harassing me and my husband for the past few years over a deal gone wrong. This is from part of an email conversation.’

I read the text and saw his threats for myself. These people were manipulative and evil. Darya further explained how she had been mentally and emotionally abused, too, but over the soured deal. She had never been paid for her services rendered and was kicked out of a position that had been all but promised to her.

My former abusers tried to intimidate Darya (not her real name) into silence. It was only her steadfastness that prevented our “former mutual friends” from doing so. If she had been silenced, I would probably have never found out how terrible my abusers really were. She also pointed me in the direction of others who had also been abused by those people. By November 2010, I had completely cut ties with my abusive so-called “friends.” Her courage and speech saved me from many more years of misery.

Fast forward from 2010 to 2014. Thanks to the astute observations of my ADHD friend I made at Texas Tech University named Fox, I learned about my autism in the midst of failing mental and physical health which eventually caused me to drop out of a doctoral program. A psychiatrist confirmed Fox’s observations. A lifetime of behavior in all of its wonders, curiosities and personal (and sometimes tragic) setbacks gained an explanation. I suddenly knew why I had such a talent for learning languages and soaking up knowledge like a sponge. Although the Asperger’s Syndrome diagnosis had been taken out of the DSM 5, that’s what the findings would have been.

Let me digress a little and say that free speech is needed to address and even present the complexities that are inherent to life. Most of these go beyond a binary paradigm. One example of this in the autism arena is functioning labels. The reason that functioning labels exist and persist despite efforts of some neurodiversity advocates to police the language of others is that they are based on outer observations. Yes, these observations can be imperfect. We see that with Theory of Mind, which has caused dangerous misconceptions about autistic people to be formed (mainly that they lack empathy and are prone to violence and other dangerous antisocial behaviors). I know that functioning labels have their limits per the saying of Laura Tisoncik, which goes:

The difference between high-functioning autism and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored.

I know that autistic people aren’t just one or the other side of the functioning binary. Nevertheless, those functioning labels exist whether harder-leaning neurodiversity advocates like it or not. As an applied linguist by training, I know that people have to have something to understand things. Language, however imprecise it can be, is that tool. “Aspie” and “Asperger’s” are words to help others not like me understand me a little better, because those are words they can understand my type of autism with. They are a point of reference so that people can have at least an immediate and superficial (keyword: superficial) understanding of how someone’s autism presents itself. I use the word Asperger’s even though it’s clinically obsolete in the United States because people need a point of reference to understand the nature of my autism. It’s up to whoever learns about someone’s autism to make an effort to actually know that autistic person and see their assets and deficits. And if they are able, the autistic person should explain their autism as best they can.

Back to the main point. Upon learning about my Asperger’s, I was very proud of my brain. I went on the Internet and found many proponents of the neurodiversity movement who celebrated their uniqueness. I also found many stories of how people had survived abuse in one form or another, whether through Applied Behavior Analysis or parents who misunderstood or didn’t know about their child’s autism. I also learned about nonverbal advocates of the neurodiversity movement such as Amy Sequenzia. It was neurodiversity advocates like her who opened my eyes more into the diverse yet very human experience of what it is to be autistic. I owe her and other many neurodiversity advocates a debt of gratitude of sharing their experiences with the world. The stories of many other autistic people, both verbal and nonverbal, are a testament to their humanity and I am happy that I get to read so many perspectives.

Armed with a newfound confidence, I started my own personal blog in late 2015, determined to join the growing neurodiversity movement. You can see the more extreme neurodiversity positions I held when I first started my blog (or example, in the entry entitled I’m sorry… my eyes are WHAT? Which you can read here: https://adastraaspie.wordpress.com/2016/01/23/im-sorry-my-eyes-are-what/ ) At the time, I was experiencing extreme feelings that derived from my years of abuse that were being amplified by the brain change being brought about by vision therapy called “neurological transitions” which continue to this day. (Vision therapy is a neurological and visual therapy within optometry that consists of physical exercises and devices such as prisms that help with vision problems, some of which are present in autism. I have written a book manuscript that describes not only my life, but how vision therapy has changed me for the better. It’s currently under science review.)

Over time, however, I began to see how neurodiversity advocates would get upset at certain people for expressing their point of view. One of these people was an autistic man named Jonathan Mitchell, someone who desperately wants a cure for autism. Neurodiversity advocates didn’t want Newsweek to interview Jonathan Mitchell and from what I understand, some of them tried to pressure Newsweek into not interviewing him or Dr. Manuel Casanova, both who are prominent critics of the neurodiversity movement.

In the same spirit that freed me from my abuse, I decided to stop blogging with blind fervor and slowly digest the opposition to the neurodiversity movement as a grand exercise in intellectual honesty. Through that Newsweek article (http://www.newsweek.com/2015/02/27/one-activists-search-cure-his-autism-drawing-violent-backlash-306998.html), I learned about Mr. Mitchell and Dr. Casanova. A lot of neurodiversity advocates don’t like them, but I decided to read on and see why they think as they do at least on a basic level. After reading that article, I came to have sympathy for (and even empathized with) Jonathan and gained quite an amount of respect for Dr. Casanova. Let me explain. Although I disagree with the idea of eliminating autism altogether, I put my feelings aside as best I could and read about Jonathan. I then came upon this passage:

Though he spends much of his days rocking back and forth, twiddling the pencils and shoelaces around and around…

That alone made me see some of my own life’s circumstances in his. There are days when I had (and still have) difficulty concentrating myself because of the vision and motor control problems that have plagued me throughout my life. Reading that and learning further about Jonathan Mitchell’s situation eventually caused me to ask myself an incredibly brutal question:

Had I not gotten any help for my vision and motor problems and if I had come to reach the age that Jonathan Mitchell is now and then learned about my autism, would I feel as angry towards mine as he does his?

Even though Jonathan Mitchell has known about his autism most of his life while I have known about mine for only a little over four years, that question I asked myself allowed me to place myself in his shoes to a great extent. The sheer magnitude of empathy I felt for Jonathan Mitchell at that moment was colossal as to be overwhelming. Most harder- leaning neurodiversity advocates would probably balk at asking themselves such a question or placing themselves in the shoes of their adversaries because they view a position like his as absolutely evil.

Had those particular neurodiversity advocates succeeded in censoring both Jonathan and Dr. Casanova for that article, I would have never had the opportunity to find that fragment of common ground with Jonathan and feel empathy for him. It also would have taken me much longer to discover the work and insights of Dr. Casanova. Some of his blog entries on his autism blog called Cortical Chauvinism have actually aligned with some personal discoveries I made while undergoing vision therapy. In other words, Dr. Casanova’s work added some scientific substance to my upcoming book.

Seeing the other side also helped me to notice that a lot of the critics of neurodiversity aren’t the evil people they’re often made out to be. In fact, I have found their words to be insightful. A section of that Newsweek article with Dr. Casanova caught my eye:

Casanova says members of the neurodiversity movement ‘claim what I do is practically genocide.”’ They are concerned, he says, that ‘what I’m trying to do is change the way they actually think.’

Manuel Casanova is not someone unwilling to listen as a hard-leaning neurodiversity advocate might have you believe. He is very willing to listen and is very understanding of both sides of the autism debate, as you can read here: https://corticalchauvinism.com/2015/02/02/bernard-rimland-founder-of-the-neurodiversity-movement/

Dr. Casanova also understands what’s at the heart of the neurodiversity movement’s concerns. While explaining brain structures and their possible role in thought and cognition (at https://corticalchauvinism.com/2013/06/11/the-neurodiversity-argument-good-intentions-resting-on-a-shaky-scientific-foundation/ ), he states this:

These observations are meant to help explain differences in cognitive or thinking styles, that is, the way people perceive or remember information. This is what many people within the neurodiversity movement try to defend. They are clearly satisfied with their way of thinking and see attempts at changing the same as menticide (mental genocide). However understandable is their feeling of being threatened nobody is trying to change the way they think. Divergent thinkers always add to society and probably account for its advancement (see Thomas West, “Thinking Like Einstein).

Reading Dr. Casanova’s blog, I also learned about Yuval Levental, a disillusioned ex-supporter of the neurodiversity movement whose life experience somewhat aligns with mine. In his guest blog entry for Dr. Casanova’s blog entitled Visualizing Neurodiversity: Breathing for Treatment (found here at: https://corticalchauvinism.com/2015/01/14/visualizing-neurodiversity-breathing-for-treatment/ ), I saw some parallels between my life and his even though they were entirely different in their circumstances. In the aforementioned blog entry, he spoke of his finding out about his Asperger’s Syndrome and feeling a bit arrogant. He also talked about how his grades began slipping once he got to more advanced classes. He writes:

For a good part of the next year, I would often obsessively brag about how ‘special’ I was to others. The problem was, I had nothing to show for it.

I immediately remembered my own talents and some of the pride I had felt over the years. Many years before, I had begun teaching myself Japanese at age 15 and was really good at it. I was on my way to becoming really good with it in my late teens and early 20s until some life events came and messed that up. It started with a couple of major personal setbacks that ultimately led me into those seven years of abuse that continue to affect me to this day (even though it has been 7 ½ years since the abuse ended).

Those years of abuse were amplified (and even partially enabled) by what I like to call “neurological baggage,” which is a descriptor I invented for the conditions that tagged along with my autism and eventually caused my vision to catastrophically fail in 2006. This made it substantially more difficult to study language and my cognition was inhibited. One of the pieces of neurological baggage that I dealt with and eliminated in vision therapy is a neurovisual 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. Not knowing where you are in space can cause quite an amount of not only physical problems (such as eyestrain and headaches), but psychological ones, as well (such as anxiety). This in turn inhibits one’s ability to interact with the world properly and can unconsciously put an autistic person into a form of survival mode. There are other neurological conditions that can accompany autism such as vestibular system dysfunctions that can do this, as well (and do a much greater job at it than aniseikonia alone can). I’ll be saving the detailed descriptions of how those other pieces of neurological baggage messed up my personal trajectory for my book.

By the time I had discovered my autism, a lot of that flame for Japanese and language in general had been extinguished by the abuse. Fortunately, a torch for my language talent was kept burning with the very talented help of my French language professors at both Lamar University and Texas Tech University. Although it wasn’t extinguished entirely, my language talent as a whole greatly stagnated thanks to both the abuse and the neurological baggage. Over the course of a few years, I went from someone learning several languages at once to studying one language exclusively (although very enthusiastically). Although I’ve gotten rid of all the neurological baggage that my optometrists and vision therapists (and I, through my own efforts that I contributed as part of the triad that we formed) have managed to find, I am still dealing with cleaning up the residue from all of these conditions running roughshod over my brain. It’s like the neurological baggage was a heavy rain that has kept everything heavily damp even after it has stopped. It’s still fairly hard to rekindle the whole flame right now because I’m still fighting to finish vision therapy. In a way, my life’s situation makes me feel like I have almost nothing to show for my potential. The only things that show I have accomplished something are a bachelor’s in French, a master’s degree in French and second master’s in applied linguistics (all three of which of I am very proud; and I am also grateful for the experiences that my time in those programs granted me). I hadn’t accomplished the goal of earning a Japanese degree (or at least becoming proficient in it like I wanted to and I hadn’t gone to Japan like I had wanted to. I hadn’t met my own expectations (for the record,  by the time I earned my bachelor’s in French, I was happy to have earned a degree in it, but I still wanted to earn a Japanese degree).

Anyways, Yuval demonstrated some of his open-mindedness towards what the neurodiversity movement defends (thinking differently, etc.) in a comment on a blog entry entitled Building Trust in Autism Research:

https://corticalchauvinism.com/2015/01/21/building-trust-in-autism-research-a-response-to-dr-manuel-casanova-posted-on-20-january-2015by-dani-alexis/

Finally, you say autism can be just the “good traits” without the “bad traits”. This depends on a case-by-case basis in my opinion. Sometimes, the bad traits outweigh the good traits. Other times, the good traits outweigh the bad traits. I’m sure that in your case, you aren’t suffering that badly to the point where you are desperate to be cured.”

Good and bad traits can also be linked. Again, it’s up to the person’s reasonable decision to determine what to do”

That doesn’t look like he’s saying: “Autism bad! Neurotypicality good! GRR! DESTROY AUTISM!” He’s just saying that you have to approach the whole autism debate and each individual case of autism with an open mind and examine all of the evidence and circumstances.

Further exploring the viewpoints of critics of the neurodiversity movement, I found that some of their experiences align more with my own in some key areas besides parallels to my life experience. Another neurodiversity critic named Roger Kulp was another voice I needed to hear. In a comments section conversation with Emily Casanova (the wife of Manuel Casanova) on her blog, Roger writes this:

I say this as someone with a diagnosis of moderately severe autism, that was severe enough that I could not live independently, or perform many of the basic functions of day to day living. In my 40s, I was found to have a condition called cerebral folate deficiency. It took a few years, but treating this condition eventually reversed my autism. This is a condition that rarely occurs in a diagnostic vacuum. I also have been found to have a unique, and complex, chromosomal disorder. There are multiple other treatable metabolic causes of autism, such as tetrahydrobiopterin metabolism.

He continues.

Treating these disorders, or treating autism with any other science based method, gets us to the lies and fallacies of the neurodiversity movement, a subject near to both you and your husband. While neurodiversity advocates agree autism is a congenital condition, although they do not use that word, they claim is treatment of autism would destroy who you are as a person. Nothing could be further from the truth.

Roger Kulp’s words resounded within me with a thundering truth. As my vision improves from week to week and month to month, I am finding that my personality, gifts and potential are still very much intact. When I deeply think about it, I have needed vision therapy to recover those things either partially or entirely and pursue my life as I originally sought to have it as much as possible. Curiously enough, the brain change I have experienced also aligns with accounts of dark moods that John Elder Robison describes in his most recent book Switched On. This is some evidence that there is merit to what both sides of the aisle have to say.

Emily’s response in all of this reminds me of my own stance after coming to learn about the other side of the autism debate coupled with my personal experience:

The main takeaway from ND [neurodiversity] that I like is to be cautious about pathologizing a person’s brain and behavior, because it’s fundamental to who they are. We must be cautious of giving messages to children especially that medicine considers them “broken”– since no child should be made to feel that way. On the other hand, should an ND proponent insist that autistic children should not be taught to better navigate the world into which they were born, then they are being ridiculously unpragmatic. Also, if they are incapable of recognizing that some cases of autism, like your own, may respond well to medical treatment and lead to better quality of life, then they are likewise being stubborn and blind. While I’m all for accommodations, we cannot expect the entire world to change. And so why would we not teach these children how to speak, socialize, read, and write when we expect typical children to do the same? We must try. –So, anyways, long story short: I am a proponent of both camps in moderation, because I see value in some of their respective messages.”

You can read the entirety of this conversation here: https://scienceoveracuppa.com/2017/08/06/a-time-window-for-treating-autism/ . I highly recommend that you do so.

We need more professionals and researchers with an understanding and open mindset like this. That being said, I found it fascinating that Roger Kulp’s experience in alleviating his autism related problems was similar to mine, even though my autism is milder in expression. Although I’m still undergoing custom vision therapy at home and my brain is still changing, I find that my personality and thought patterns are still intact. They’re even being enhanced in several ways such as faster cognition speed. I can process far more nonverbal social cues when everything is going right. Plus, I’m a lot less nervous around strangers and can interact with a wider range of people than before I started vision therapy. I still feel the same at the core.

Is it possible to have autistic traits without disability? Yes. There are plenty of people in my family who display varying constellations of autistic traits, but without the level of disability that surrounded my brain. With my thought patterns, gifts, potential, etc. intact (and even growing), the facade of the harder stance on neurodiversity falls apart. A softer stance is more realistic and is less cruel than the hardest leaning neurodiversity position in the sense that autistic people wouldn’t be denied the treatment they need for conditions that can impede thought, cognitive ability and the ability to communicate (and even interact with the world).

The autism spectrum will be with me one way or another for the rest of my life and I am okay with that, but that doesn’t mean that I have to suffer from motor and visual impairments. Future autistic people shouldn’t have to suffer from other impairments, either.

There are some neurodiversity advocates that have adopted the hard position on neurodiversity enough to be fully against the medical model of disability and advocate for its abolition. This is incredibly foolish and unrealistic. In my case, the presence of aniseikonia and the vestibular system disorders that plagued me until recently is evidence that completely abolishing the medical model is a very wrong proposition. On a related note, it’s also incredibly foolish to entirely dismiss the social model of disability. There are some incredibly valuable insights from the testimony of disabled people that shows that ignorance can entirely pave the way for the dismissal of the value that disabled people can bring to society. All of us should take the time to read the stories of those disabled people and rethink our initial thoughts on them. Some differing takes on the social model don’t entirely dismiss medical impairments, but some of them I have read think that accommodations alone can solve the problems of the disabled. In any case, medical impairments are not the person.

All of this makes me ultimately arrive at another question: Why won’t some neurodiversity advocates realize that the autism of people like Jonathan Mitchell and Roger Kulp or even mild autism like mine might not be exactly like theirs? I’m talking about etiology, not outward behavior. Would a neurodiversity advocate campaign for autistic people to keep conditions such as aniseikonia or vestibular dysfunctions? Probably not, because there are neurodiversity advocates who want epilepsy to be cured. What about conditions such as cerebral folate deficiency or chromosomal disorder in the case of Roger Kulp? No human being deserves to live a life with debilitating motor control issues, vision problems etc. that make a person to be more heavily prone to psychological manipulation or impair a person to the point where they can’t function or live by themselves independently.

Treatment and research are very real and even desirable things to do. There are a lot of neurodiversity advocates who are happy with how their lives are going with a great degree of satisfaction. But even someone who loves my brain as much as I do and loves its differences isn’t satisfied with the level of disability I have been stuck with for most of my life. Don’t get me wrong. There are many things I love about my brain. One of the things I love most about it is the synesthesia. If you don’t know what synesthesia is, it’s when two or more of your senses combine into a single sensory experience. If you’ve ever heard of people tasting colors, then that’s one example of it (and one type of synesthesia I experience).

The neurodiversity movement does have some very potent nuggets of merit to it. They protest the abuse and occasional mercy killings of autistic and disabled people. Their efforts at protesting the Judge Rotenberg Center have highlighted the fact that places with abusive practices still exist in this day and age. Autistic people deserve to be treated with dignity, no matter what their functioning appears to be at first glance. However, for every successful autistic person like John Elder Robison or Temple Grandin (along with other successful neurodivergent people), there are many more autistic people like me who are struggling through basically no fault of their own. While the contributions of those two to society and their fields show the world evidence of the potential that autistic people are capable of in spite of many obstacles, most of us need help in some form or fashion in order to even have a sliver of hope of closing the gap with them. Even though not every autistic person isn’t the next Einstein, through their interests an autistic person could contribute to their field. Even if there are no special talents or abilities buried underneath all of that disability, such an autistic person deserves to live life as free from debilitating pain and impairment as possible.

Moving onto another subject related to free speech and the autism realm, anyone who candidly talks about certain situations in autism is either attacked or otherwise accosted by the more hard position neurodiversity advocates. One example of this phenomenon is a fellow Aspergian named Thomas Clements, whom I have been following for a while on Twitter because we share an intense interest in mindfulness. He has a 27 year old nonverbal autistic brother named Jack who can’t take care of himself and has to be supervised 24 hours a day. In a recent Twitter debate, neurodiversity proponents approached Thomas with the assumption that he was more supportive of the parents of nonverbal autistic people (or “the enemy”) than neurodiversity advocates (giving credit where it’s due, I commend the neurodiversity advocates who were civil in talking with Thomas). He has also written an article criticizing the neurodiversity movement for Quillette Magazine last year (link here: http://quillette.com/2017/10/15/problem-neurodiversity-movement/ ) and was recently interviewed by Quillette’s Claire Lehmann here: http://quillette.com/2018/01/22/autistic-buddha-interview/

When I read his criticism of the neurodiversity movement, I knew that I had to have a conversation with him. My dialogue with him confirmed that Thomas is a very open-minded yet critically thinking individual. I decided to talk with him because it’s very easy to get the wrong idea about Thomas by reading his works. For example, in The Autistic Buddha he writes “Autism is a heavy burden. It’s a barrier to life, to being instinctive, free and spontaneous.” He in no way states that he wishes that autism be eliminated. Contrary to the assumptions that a harder leaning neurodiversity advocate would make, Thomas celebrates and champions difference, but this attitude is tempered by the reality that his family and other families living in the same situation experience. Thomas has stated that his parents have no social life or free time due to the inability of Jack to take care of himself, which is a very matter-of-fact state of affairs. He in no way ever states or even implies that he wishes that his brother never existed. Thomas’s deep love for his brother is apparent in all of his social media feeds. It is also very apparent in his recent book The Autistic Buddha and I look forward to his next books The Autistic Brothers and The Autistic Warrior. Harder leaning neurodiversity advocates would claim that Thomas is somehow ableist because he doesn’t want Jack as he is now to exist. This is a very shaky position to take because Thomas and his family have a very hard time understanding what Jack wants and needs. I stand to think that they might have made efforts to do so, but still can’t communicate with him.

Before I get into offer a couple of more thoughts on situations in nonverbal autism (which is a realm I have no experience in and which I can offer only my thoughts about), I thought that I would take a moment to recognize the efforts of the neurodiversity advocate Shannon Rosa, who has a nonverbal autistic son named Leo. I admire her love and championing for her son and promoting the understanding of nonverbal autistic people. I would like to thank nonverbal autistic advocates Amy Sequenzia and Naoki Higashida (plus many others) for sharing their valuable stories and insights.

That said, I want to take a moment to talk about a concept in the autism and disability worlds called “assuming competence.” That is, no matter how they appear on the outside, assume that a disabled person can understand you and the words you’re saying even if they don’t have a way to communicate with you )and that disabled people have thoughts of their own). This is something I learned from Shannon and other autism and disability advocates. A good example of assuming competence regardless of what’s on the outside is found in the book Ghost Boy by Martin Pistorius, a man who fell into a deep coma and reawakened in a state of locked-in syndrome. I learned about this book from Lauri Swann Hunt, the founder of the disability advocacy website Ollibean (read her review of it here at https://ollibean.com/five-reasons-you-need-to-read-ghost-boy-by-martin-pistorius/ ). I am thankful for disability advocates for telling the world about this concept. Competence should always be assumed.

Taking nonverbal autism further, some neurodiversity advocates (not necessarily hard-leaning) would say things like “self-injurious behavior is a communicative behavior that something in the environment is bothering them.” That can be very true in many cases, but non-autistic people don’t communicate in that fashion. Unless someone has experienced sensory problems that cause the very real desire or even impulse to do something like injure themselves or damage things, it would be difficult for them to know that this is more than likely a method of communicating or temporarily alleviating those sensory issues. I can relate to this to a limited extent, but whenever this has happened I had to exert extremely exhausting conscious effort to prevent myself from losing executive function when my sensory impairments were much worse than they are today.

Let’s assume competence and assume for a moment that every nonverbal autistic person who hasn’t established a way to communicate with the outside world is trying to find a way to communicate but can’t. Say that every known option has been exhausted. How are the parents and caregivers of these autistic people supposed to know how a severely autistic child is attempting to communicate? How are some of those families supposed to deal with executive function problems that result in destruction of property?

One prominent example of this is Jill Escher. Although I have issues with some of the things that she has said (a recent example of this is being “If you can disguise your autism, then IMO you cannot possibly have autism,” a very inaccurate and insensitive statement about people on the milder end of the spectrum), seeing her posts about how her two nonverbal and severely disabled autistic children destroy her iPhones, damage her piano and tear up her bedsheets (among other things) makes me feel at least a tiny amount of sympathy for her. Truly place yourself in her shoes for just a moment. She can’t communicate with her children (as far as I know) and constantly has to replace valuable property. To most people who would see her posts at even a slightly more than cursory glance, her words would appear to be a far cry from the American eugenics propaganda of the 1920s about the “feeble-minded” costing society money or Nazi propaganda posters saying that disabled people are costing the Third Reich’s citizenry millions of Reichmarks. Her position is one of frustration. That said, a dollar amount must never become a factor in deciding the fate or value of a human life. This is where the voices of disability advocates shine. They remind us that we must never return to such a mindset and that life is incredibly precious in spite of labels or impairments that might otherwise limit us.

Let’s take it a bit further and say that Jill Escher’s kids are truly thinking differently and have an underlying potential to change the world. That potential is not going to do them any good while whatever is impairing them continues to be present, whether it be something with the structure of their brain or in the environment. Perhaps she’s not quite able to see the other end of the autism spectrum’s points of view because of her constant intense frustration dealing with her children. I’m not in her head, I’m just imagining what it must be like in her situation perhaps to a deeper level than most hard-leaning autistic advocates would take the time to do. I get that neurodiversity advocates have been trying to reach these people and give them hope through their frustration, but I figure that many attempts to communicate by the parents of these severely disabled autistic have been carried out without success.

The more extreme (and able to function) zealots of neurodiversity have a tendency to view the people who want their severely disabled children to be able to lead as independent a life as possible as those who would not only figuratively “kill” their child by curing them, but those who would maliciously take the next step to eliminate the Aspergians because they’re nonconforming. “Those people want to round up DNA samples and get to aborting because they want everyone to be the same” they think to themselves (I’m opposed to the notion of something like that, by the way, regardless of functioning levels).

That’s about all I have to say for the core concerns of autism discourse. Let me offer some thoughts on a little more of the nuance of the realm of free speech and free expression in the world of autism and beyond and how everyone can have it without curtailing the contents of their speech.

Like our very messy human nature, the vast nature of the realm of free speech can be any variety of situations. Free speech is at its best with willing participants, but there is also a very involuntary nature to it at the same time. What I mean is that even if someone is left alone to live their life as they see fit and say what they want and express themselves as they like, they will inevitably run into ideas, speech and people that they will vehemently disagree with. It’s a fact of life and a price we have to pay for being human.

A beautiful thing about free speech is the option to back away from everything and let your brain “cool down” as it processes information. Being uncomfortable by having your ideas challenged is inevitable, but you don’t have to bombard yourself with opposing viewpoints all the time to the point of becoming a nervous wreck. Remember that everyone reserves the right to decide their level of engagement and can have reasons they want to not do or say something. In my case for example, I am very wary of and still somewhat avoid people and things that remind me of the abuse and my abusers. I will probably be dealing with post-traumatic stress and the psychological scars from those many years of abuse for years to come. Although I open up about it a little in my book, I can’t and won’t talk about the full extent of it for years to come because not only am I still not spiritually prepared to do so, but I am also protecting a few other people besides myself. My former abusers are the retaliatory type toward anyone they fear is defaming them. For that reason, I had to obfuscate a few details. That aside, would I try to censor someone who even remotely reminded me of my abusers even though I’m still dealing with lingering PTSD? No, and I try my hardest to avoid falling into the temptation to use my very real emotions and experiences as an excuse to play the victim card.

This leads me to another topic that is ancillary to free speech (but not necessarily required for it). We don’t take into account reasons why people might not want to read something or even venture an opinion nowadays. I’m talking about scenarios in which one party or the other doesn’t have a response to someone’s speech or an answer to someone’s question. The person who asked the question and their audience thinks “I/We’ve won the argument! Look at that person unable to respond! PWNED!” An opportunity for a person to think for themselves or even learn something new becomes a moment of humiliation and embarrassment (if someone goes in belligerently or without a calm head, then some of that embarrassment can be on them). Said person withdraws from the realm of free speech and may even become an opponent of it. Ultimately, I’m not saying that feelings matter over speech. That’s absurd. What I’m saying is that there can be certain levels of force or pressure whether overt or subtle (yet very powerful) when we talk with people that can make us feel like we’ve won an argument and disregard our opponents entirely. This in turn can put people off from participating in discourse because they feel that people won’t listen to them. (Not bad for someone who supposedly can’t understand any social nuance, huh?) Whatever reason they might have to not speak or listen, we should be careful to avoid branding them cowards.

People may direct speech at you that you personally don’t like, but you should try to see their perspective one way or another. That’s how you can form your own thoughts and opinions while maintaining your individuality.

Free speech is much less frightening when you have the true ability to think for yourself. I’m not talking about the very real and valid perspective of “My experience is the truth and you can’t invalidate it. I’ve formed my own thoughts through a lifetime of experience” (that ties in more with freedom of expression, but can be expressed through speech). I’m talking about the ability to see from your own perspective and your opponent’s at the same time and actually feel at least a little of what your opponent feels. A quote by F. Scott Fitzgerald on Manuel Casanova’s blog sums this up perfectly: “The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function.”

Sometimes this is very difficult to do, especially in the realm of autism and other developmental disabilities. On one hand, neurotypical people don’t know what it’s like to live as an autistic person and never will. In any case, it can be hard for neurotypicals to take on the perspective of other neurotypicals. On the other hand, autistic people face the same problem when interacting with neurotypicals. Hell, oftentimes, autistic people don’t know what it’s like to live as other autistic people. We can make guesses (sometimes right, sometimes wrong; all of this with a varying degree of correctness and wrongness). They can also have various conditions that accompany their autism that can make it incredibly difficult (but not impossible) to consistently reach this higher level of ability to think for themselves because of constant pain or distorted senses that can distract or fog the conscious mind. Before any of you harder leaning neurodiversity advocates reading this start pounding on your keyboards and accuse me of being ableist or get any other ideas in your head, please stop and actually reread this paragraph from the beginning. Autistic people who haven’t received some form of help can be well capable of thinking critically to great degrees, it’s just that whatever conditions that can accompany autism can greatly cloud an autistic person’s judgment and ability to take on the perspective of others (or even interact with the world). It doesn’t mean that autistic people lack this ability, it means that there is something (or some things) that can accompany autism and mask or hinder this ability to varying degrees. I speak from my own experience. Your mileage may vary.

Even if you don’t agree with the people you passionately oppose, you can at least try to learn something new from them, even if it may or may not apply directly to you. I can’t help but feel an incredible sense of irony because I learned about mindfulness from one of my abusers, a person whom I still somewhat deeply despise to this day. Without mindfulness, vision therapy wouldn’t have been as successful for me as it has been. Learning something new and growing at least a little in that fashion will earn you a certain degree of respect from people. Even your opponents will be taken by surprise because it will show them that you aren’t as weak as they might have thought you were.

It goes beyond a superficial “I know that my opponent has an opposing viewpoint, but my experience is mine!” That type of thinking is like a child saying “I learned my lesson, can I go now?” when they really haven’t. It reeks of a subtle “I’m going to keep my opinion by force” instead of “I’m going to listen to my opponent’s point of view and let my opinions take their own shape according to my experiences and interactions with reality around me. If I at least learn something new, it’ll be cool. If my opponent’s mind doesn’t change when I speak my opinions and experiences, I’ll be fine with that. I’ll just keep standing on my own two feet and live life as I see fit.

That is another grand point of free speech, which is to add to or even tweak your own ideas and come to your own conclusions. We have to question how much of our position we are willing to modify when we come across new concepts or variants of them. In all of that, there’s a fine line to walk when thinking for yourself. Do you want to be so flexible as to bend to the will of everyone around you? It’s not good to be that flexible. If you keep changing your mind for everyone and everything, then who are you? On the other hand, you shouldn’t be so rigid as to break when life gets tough or when new things pop up that your experience alone can’t explain.

There are so many layers of subtlety and factors that I definitely haven’t been able to describe or even think of them all in this essay. There’s understanding on a very superficial intellectual level (and deeper intellectual levels) and then there’s understanding fueled by compassion. It would do people in the two autism camps (and beyond) some good to really imagine what the other side is thinking and feeling. Not just a cursory thought, but taking a few minutes to purely and genuinely place yourself in the shoes of people on the other side with your imagination. Your imagining the other side’s situation may be inaccurate to varying degrees, but it can still really can help you develop at least a small degree of compassion for people you may deeply oppose. Only engaging in dialogue can help you correct those inaccuracies, but you have to have your mind and heart open to at least a small degree. That’s another beauty of free speech. You can venture a thought on something that you have no experience in and have someone who does have experience in it to respond and explain it to you. It’s up to you during that to leave as much of your experiences and bias at the front counter as possible before walking in someone else’s shoes.

Although it’s not required for free speech, let’s try and have a little compassion for those we label “opponents” and “enemies” in our discourse. We all could use a little. Free speech can allow for the building of compassion and understanding if we allow ourselves to have at least a little a little bit of each for those whom we consider our foes. That spark of compassion can grow into a flame if we can just not be afraid of truly walking in the shoes of our enemies. We must never use force, even on a subtle level when we greatly disagree with someone. It’s like the Hindu, Buddhist and Jain concept of ahimsa or nonviolence. At its heart, it basically means “use no force in everything you do.” It doesn’t mean “let everyone walk over you” or “don’t defend your life,” but don’t force yourself in doing anything. It finds a kindred spirit in the Christian concepts of turning the other cheek and loving your enemies, as Jesus put. Until you extensively practice not using force or straining yourself in everything you do, you won’t know what it means.

As a final thought on the I’m 100% right and you’re 100% wrong” way of thinking, I will quote a section of an excellent digital handout on proof versus evidence by Dr. Indira Rajagopal, a professor of biochemistry at Oregon State University (found here: https://oregonstate.edu/instruction/bb317/scientifictheories.html )

Proof vs. Evidence

Another word that is commonly misused (sadly, sometimes even by scientists, who should know better) is “proof”.

What “proof” means in everyday speech:

In casual conversations, most people use the word “proof” when they mean that there is indisputable evidence that supports an idea.

Scientists should be wary of using the term “proof”. Science does not “prove” things. Science can and does provide evidence in favor of, or against, a particular idea. In science, proofs are possible only in the highly abstract world of mathematics.

No one autistic person or parent’s story is “proof” that autism needs to be eradicated or that efforts toward research for treatment need to be curtailed. They are evidence that something needs to be done to alleviate the suffering of autistic people and that some things have to change whether it’s using the power of medicine to heal the body and brain or fighting for some form of societal change. There are lots of problems in the lives of autistic people today that desperately need to be addressed. From moderately to severely disabled autistic people who can’t live independently to autistic people like me who can have invisible, yet very debilitating disabilities. We have parents who worry about whether or not their autistic kid will be able to find work or take care of himself or herself after they’re gone. In my case, I haven’t really had a substantial form of healthcare since 2004 because of employment problems that I know that my vision and motor control problems have played a very large role in. I am one serious accident, injury or illness away from crippling medical debt.

In any case, autistic people can’t let their own autism experiences cloud their judgment and prevent the separate needs of other autistic people from being met. One side cannot speak for or dominate over the other, even though some circumstances in both camps can overlap. Society changes slowly. That’s why autistic people should keep speaking out, no matter what their stance is on autism itself. There is so much we still don’t understand about the brain and autism in all of its functioning levels. When does mitigating or eliminating disability become seeking to change people because they’re not like us? Free speech allows for that understanding to grow if only we can put aside some of our pride and back away from our own circumstances for even a moment and listen. If we can do that, maybe – just maybe – we can have a shot at meeting everyone’s needs.

Anything else beyond that is for free speech and free expression advocates to discuss. In the case of autism and other realms beyond the scope of this essay, there are people who cannot or will not live up to the standards of the majority. They will passionately defend their way of being and doing things. That is something that we have to keep in mind whenever we read something or write about autism (or anything else, for that matter). Passion is meant to grab attention and its role in discourse should be limited to that. After attention is gained, it must be tempered by calm and reason as much as possible. Given the suggestion by recent studies that there might be many subtypes of autism with different etiologies, the passion of mildly autistic people can be misdirected when they claim to speak for more severely impaired autistic people.

Here is my final thought: Free speech is a tool to help you find your own unique place in the world. Although it clashes with our tribal human nature, free speech helps make you uniquely human by helping you find said unique place in the world. To deny a person the speech that they need to hear is incredibly wrong. For example, “Stop beating yourself up. You are fine the way you are.” or “There are treatments that work that can clear your cognitive fog.” are two incredibly valid points of speech that an autistic person could need to hear (in my case, both of them were valid for me). I wouldn’t be on the way to my place in the world if I hadn’t took the step to at least know the basics of what the opposition had to say. Imagine what it would have been like had harder-leaning neurodiversity advocates tried to stifle something like vision therapy.

Preventing an autistic person from hearing the speech they need to hear prevents them from finding their place in the world through either treatment or acceptance (and sometimes a mix of both). The same could be extrapolated to the rest of humanity, but that’s an entirely different beast.

Maybe another day.

Making the Best of My Circumstances

1.) Get out of bed

2.) Edit, write, research (for 3 to 4 hours, or until my body says “STOP”)

3.) Eat lunch

4.) Unwind a bit by playing video games

5.) Do vision therapy

6.) Relax again by watching anime or reading manga

7.) Eat dinner

8.) Do more vision therapy

9.) Go to bed

10.) Repeat

This is my daily routine. Steps 2 to 8 may vary in order (and even be different activities), but this is pretty much my routine.

One big problem: it’s sometimes soul-crushing. I know in my heart of hearts that one day, I will no longer be disabled by my vision and motor control problems.

The problem is that there is no countdown timer to that day. That’s what makes it soul-crushing. I can’t steel myself for that breakout moment. It’s a situation like this that would make most people give up and despair about doing any kind of therapy in the first place. Most neurotypical people can complete vision therapy in a time frame between 6 and 18 months. With autism, it can be significantly longer. I have been doing vision therapy for more than 8 years. The first 5 were marred by imperfect conditions and underlying anxiety. My first optometrist, Dr. Nolan Riley, and his staff were nothing short of supportive (as are my second optometrist, Dr. Marcia Moore, and her staff), but other things conspired to make those first 5 years of vision therapy less than fully effective (more on that in my upcoming book). Another wrench thrown in the cogs of those first 5 years is that I didn’t know about my autism until the final half of the 5th year. Dr. Riley later expressed regret that we didn’t know about my autism (not anyone’s fault), and he would have done things differently had he known.

As I recently said, most people would simply give up in the face of such a daunting task. As a single-minded Aspie, giving up on the elimination of my visual and motor disabilities is not an option. When I took up mindfulness again and started applying it to vision therapy, I had a moment where I felt a miniature, microscopic and atom-sized iota of the vast potential of my autistic brain unfettered by disability. Yet, at the same time, I felt a vast amount of the remaining disability that stood in the way of all of that potential. That disability is what stands in the way of living life as I see fit. It also stands in the way of my independence.

I’ve mentioned neurological transitions in previous posts and how they have prevented me from finding regular work for the time being. Can an employer really understand how brain change can make someone extremely lethargic, affect their mood, hamper work performance and the ability to get along with one’s coworkers? Probably not. I know that performance on the job matters and that disability can hamper it, but the chance of finding an understanding employer in East Texas who would work with me as I recover from my visual and motor disabilities is next to nothing. I’m not by any means lazy, but most able-bodied people don’t understand the straining journey of what it takes to recover full-time. More importantly, they don’t know how invisible disabilities (many are present in autism/Asperger Syndrome) can really hinder someone’s functioning.

Yes, recovering from disability is a full-time, around-the-clock job. Being an Aspie makes my chances of success much higher. There are, however, several obstacles in my way which I am diligently working to overcome.

The biggest of these obstacles is a huge psychological colossus that I have to grapple with every day. It stems from – you guessed it – my past of mental and emotional abuse (I’m not here to play the victim, I’m just stating facts as part of my healing process). On top of the post-traumatic stress that lingers, I have to fight the immense regret I feel almost every day. I feel terrible that years of my life were wasted under this abuse that were largely enabled by underlying neurological baggage that I didn’t know about while I was growing up. On top of that, once I broke free of the abuse, I couldn’t immediately get back to the life I had always wanted because of underlying disability.

In that regard, I have come to realize that not only do I have to take responsibility to fight for my health and become more able-bodied (something which I gladly took up a long time ago), but I have to take responsibility for my emotions during this trying time. How can I expect to be a more effective member of society if I can’t manage my emotions in the face of tough obstacles?

Let me frame my situation in context of this. Because of my Aspie single-mindedness, I can have the tendency to slip out of the present moment (ironic, considering that I can stay in it because of my single-mindedness). Often I find myself still so single-mindedly focusing on that life that I’ve always wanted. I have been wanting to go to Japan for almost 22 years. It’s something that I know that I was born to do. Since I’ve had employment problems for all of my adult life, I have never been able to save up enough money to travel anywhere. Couple that with vision and motor problems somewhat hindering my ability to acquire skills. Of course, the neurological baggage that accompanied my autism contributed to my employment problems as well as some social relatability problems. They also stood in the way of me accomplishing my Japan-related dreams. A multiple whammy. Combine that with the years of abuse that totally discouraged my love of anime, manga and all things Japan (amplified by vestibular system disorders) and you’ve got the perfect setup for wicked PTSD and frustration.

Fast forward to October 2013, I had eliminated the underlying disability that had been found at that point by then. Regardless, the improvement of my vision had stalled, preventing me from studying Japanese on the side and trying my hand in other pursuits related to the doctoral program I was in at the time. Coupled with other developments in my life at that point, I began to have frequent meltdowns.

In a turn of good fortune for me, one of my ADHD friends spotted my autistic behaviors and recommended that I go to a psychiatrist and seek a diagnosis. Not long afterward in March 2014, I received my diagnosis. After hearing my adult life story, the psychiatrist who diagnosed me said this:

I’m going to tell you this without mincing words. You really need to start thinking of a way to pursue your interests as directly as possible. Otherwise, you are going to have another major depressive episode like you had from 2001 to 2003.”

I left my abusive situation in 2010. It’s 2018. Do the math. All because that inability to use my vision and body efficiently is the reason that it’s taken me so long to get my life back on track. On top of that, I didn’t even discover any of my underlying disability until late 2012.

At the time of my diagnosis nearly 4 years ago, I had reached the limits of my physical, mental and spiritual capabilities. All I could focus on was getting to the life I had always wanted and knew that I was born to live. I was determined to directly pursue those interests. Little did I know that I still had a long way to go. After I moved back in with my folks, I quickly found that I couldn’t study Japanese full-time or other potential fields of interest without quickly developing intense headaches. This is because although I had eliminated most of the underlying disability that had plagued me at the time, I still had to deal with mopping up the residue it all left behind. My aniseikonia wouldn’t be discovered for another 2 to 3 years.

Because of this, I began to have intense meltdowns again. I couldn’t accept the fact that my brain and body weren’t immediately up to the task of going full-throttle again. Couple that with the intense emotions I was still feeling related to PTSD, and it was a perfect recipe for a self-pity party. It wasn’t the first time that I had one, but this time it was even worse than the one I had immediately after leaving my abusive situation.

Since I had time to properly explore my body/mind connection, vision therapy slowly alleviated my torment. Mindfulness is accelerating that alleviation. I haven’t had a major meltdown since November 2015, thanks to vision therapy alone. That’s a victory in itself.

Over time, I have slowly reframed my situation. More and more, I have noticed that it is far better to think of my situation as a challenge and not an impediment. I should gladly embrace everything and throw mindfulness into the boredom that I sometimes feel. As I perfect mindfulness, I find that everything becomes new and fascinating again. I am also slowly finding that I can bend my mind better to my will and waste less energy doing things.

Not only have I learned to embrace the present more and more, I have learned to embrace imperfection. Whenever I do vision therapy, I do my best to detach myself from emotions or thoughts related to distress at having still imperfect vision or the extreme desire to have fully functioning vision. There’s a difference between forcefully wanting something to happen versus gently letting it happen (yet still wanting it to happen). The sooner I get into that frame of mind, the sooner I get results. I become pleasantly surprised with discovery and novelty if I can just quiet my mind even a little bit.

My Cortical Chauvinism Guest Post on Vision Therapy and Autism

It’s been a couple of weeks since this featured on Dr. Manuel Casanova’s blog Cortical Chauvinism. I will repost it here now with a few minor edits.

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 through 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 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 Autistic 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 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.

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.

What’s Beyond the End of Vision Therapy? Some Thoughts and My Plans for the Future

I’ve been giving this a lot of thought for a long time. For the past 3 ½ years, I’ve been experiencing accelerated improvement in vision therapy thanks to me not having the pressure of looking for an ordinary job. I work odd jobs as they come, but they’re not steady.

Why haven’t I been able to work an ordinary job while doing vision therapy? It’s simple. Neurological transitions. They are a real pain in the butt, but they’re a huge sign of progress in vision therapy. You can read an in-depth description of them by the optometrist Dr. Jeffrey Getzell here.

I have been experiencing neurological transitions on a regular basis since the middle of 2013, which is also shortly before the time I began having constant serious meltdowns that caused me to retrospect on my life and figure out what my real priorities were. When the neurological transitions first began happening I was usually so lethargic that I had to sleep between 36 and 72 hours extra (48 hours was the average). I would have brief periods of time where I could go to Japanese class on campus, but sometimes I had to go straight home afterwards, even if I wanted to hang out with my friends. I taught an online class, so I didn’t have to worry about being on campus for an extra amount of time.

In July of 2017, my vision reset to the point it was at before it catastrophically failed in 2006. The amount of time I need to sleep beyond the average 8 hours per day extends between 6 to 24 hours (12 on average). As time passes and I work ever more diligently applying mindfulness to vision therapy, the time for these neurological transitions gets shorter. I do have to be careful not to strain my vision, though, or I could risk great pain. Fortunately, most vision therapy training is self-reinforcing, so I don’t have to worry about another catastrophic failure like I experienced in 2006.

I still have a ways to go before vision therapy becomes 100% effective and I can read for long periods of time again or see everything in crystal clarity 100% of the time, but I’ve nonetheless been noticing a lot of benefits:

1.) Sometimes the environment becomes so bright, engaging and alive. It’s like someone turned up the brightness on a TV.

2.) Everything old is new again. It’s a lot like being a child again, but I can adult at the same time.

3.) I catch glimpses of my brain unfettered by disability. It’s only brief flashes, but my brain set free will be something to behold.

This raises a lot of questions. Mainly “What will I do after I am officially finished with vision therapy?” and “What will I be able to do after my brain finally snaps into full stereo vision?”

I already know some of what my brain is capable of, and it’s a lot. One of my first priorities will be to start learning multiple languages again. I want to go live and work in Japan for a while. Right now as I edit my book, try to find an agent and cook up a book proposal at the same time, language learning is incredibly limited. I try to keep my French polished while trying to get the basics of other languages down and rekindle the flame of Japanese. It’s incredibly hard to do. I’d really love to be involved with the anime and manga industries somehow. I also love computer science. I’ve been able to spot errors in code, but my disability has prevented me from pursuing such a career.

What will be interesting is trying new things. One example of my brain’s capabilities that I didn’t know it had was the ability to do math beyond algebra. When I was working on eliminating my vestibular system dysfunctions, I actually found myself being able to do calculus for a short amount of time. Unfortunately, I still had many layers of disability to clear (and I’m still working on it), so that flash of talent disappeared. I am eager with anticipation to see what my brain constantly freed from disability can do.

I know a lot of people will be interested in hearing my story and will want me to give lectures and talk about my upcoming book. I would be more than happy to do so, but I don’t want my life to be just autism talk and autism advocacy. As Temple Grandin so aptly puts it (emphasis mine):

Way too many young adults with autism and Asperger’s have never had a job or only make a living speaking on autism without real life work-experience.

At the time of the writing of this blog post, I am 36 ½ years old. Most of my life before now was heavily defined by disability compounded by depression and anxiety rendering me unable to pursue the things in life that I have always wanted to do. It will be a little while yet before vision therapy finishes, so I will probably be 37 before it all comes together.

In other words, I have a limited amount of time left on this Earth and I want to spend as much of it as possible living it after my brain is set free. I’m more than happy to give talks and pitch ideas to professionals, but ultimately, I want to live. I don’t want to put autism on a pedestal and have my life revolve around it.

As I put it on Twitter:

I am determined to turn my life around.

More thoughts to come.

Some Thoughts on The Autistic Buddha by Thomas Clements

Edited on 1/27/2018 for minor spelling errors and other small details (e.g. – changed “a Mr. Michael Santone” to just “Michael Santone”).

I thoroughly enjoyed this book. It’s not only great because there are some parallels with my life, but the differences make the story refreshing to read. I’ll try to do it justice by talking about the parts that stood out the most to me because there are so many tidbits of wisdom that to try and analyze the entire book would lead to indecisiveness. Think of this as both a review and a kind of “compare and contrast” between my life and Thomas’s. There are just so many similarities that I just can’t help but do so (my affinity for foreigners is one of them). I’ll also offer my perspective on some of Thomas’s thoughts.

The first thing I’d like to say is that the greatest quality that really stands out about this book is that Thomas tells his story from a deeply personal and spiritual perspective. I will be also be telling mine in my upcoming book about my life as an autistic person and vision therapy from a deeply personal yet more scientific one. The manuscript is currently under science review and I hope that it will be published sometime this year.

One thing that really stood out in the similarities department was how Thomas and I both were shut-ins during our university years. For 9 months in 2003, I lived in Austin, Texas hoping to use a community college as a back door to get into the University of Texas at Austin (which is the only university in the state of Texas that offers a four year degree in Japanese). Unlike Thomas getting into university on his language talent alone, mine wasn’t able to help me do so. Standardized test scores precluded my entry into many universities and also prevented me from obtaining scholarships. I think in a way, that some standards in America are incredibly arbitrary and hurt more than they help. Anyway, I was suffering from deep depression at the time and had difficulty finding work, so I became a shut-in until I found work for a brief period of time through a friend that I had made in Austin. I’ve never spent time in a psych ward, so that was something interesting to read about.

Another element that really struck close to home was how Thomas lost contact with Oliver, someone who had made such an impact on him at a time it was needed. The same thing happened to me, too. When I was at the beginning stages of depression in 2001, I befriended a man named Michael Santone, a Japanese translator who recognized my language talents. When my depression got worse and I endured mental and emotional abuse over my interest in Japanese anime and manga, I slowly began to feel like a fake in the cognitive dissonance and lost contact with him, as well. Even after my abuse ended, I felt like such a phony and had a hard time re-establishing contact with him. I felt almost exactly the same way Thomas did. Fortunately today, I am in permanent contact with him and feel less like a phony with each passing day. I hope that Thomas has successfully re-established contact with Oliver.

The friends we made along the way to our current point in life is another striking similarity our lives. AJ is the friend who stood out the most to me. I made some friends who have hearts of gold during both the Lamar University and Texas Tech eras of my life who have stood with me through thick and thin. One of them (named Fox) you will read about in my upcoming book spotted my autistic behaviors and encouraged me to see a diagnosis. Another one of them (her name is Amanda) encouraged me to take steps to claim the life I had always wanted after I felt so stuck in my life’s trajectory. Friendship is the world and can make life so much easier for autistic people. It’s up to us to find and make those friends.

I really enjoyed reading about Thomas’s accounts of traveling overseas and teaching. I’ve never traveled overseas before because I’ve had trouble finding work that pays significantly higher than somewhat above minimum wage. The teaching I do have experience with. During my 5 year stint at Texas Tech University, I taught for 4 of them; 3 years as a French instructor, 1 year as a computing course instructor. I commend Thomas for teaching at least for a little while without training, as I certainly couldn’t have done it without some formula to teach! I panicked my first few days of teaching even though I had a year of preparation as a teaching assistant during my first year there.

One big interest that Thomas and I share is mindfulness, which Thomas describes towards the end of the book. From what I understand, most people think of mindfulness in context of meditation. I occasionally meditate, but not on feelings of compassion (because I feel it a lot without needing to cultivate it). From what I have read, our experiences in mindfulness differ somewhat. The afterward in The Autistic Buddha seems to indicate that Thomas’ experience with mindfulness is the meditative type. Mine is different from his. As a teaser (but not to spoil my story entirely), I’ll give a little excerpt from my upcoming book as to how my experience with mindfulness differs:

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.

In spite of our differences with how we do mindfulness, we come to more or less the same place: we are stronger today with its help. I also say towards the end of my book:

Vision therapy has given me the mental and emotional fortitude to be a far more effective member of society than before, and for that I am grateful.

And I continue to gain more mental and emotional fortitude as I continue custom vision therapy at home. I’m still working to fully heal the scars of the years of psychological damage done to me by the abuse I endured for nearly seven years.

One segment toward the end of the book stuck with me and gave me some food for thought. Thomas says:

Autism is a heavy burden. It’s a barrier to life, to being instinctive, free and spontaneous. It’s at the extreme end of the human predicament of pretending to be am isolated individual, of pretending to be a separate self. People with autism have to go on a much more tortuous and far less accommodating road than most before they can discover their place, their own personal nirvana, and breath a great sigh of relief.

To a point, I agree. There have been times where I have thought that “autism is a heavy burden” and “autism is a barrier to life.” In my experience, autism without some form of help truly is a heavy burden. Before I underwent vision therapy and practiced mindfulness, navigating social contexts was incredibly difficult. Now it’s much easier. What’s great about it is that I am still me at the core, but I am much more mentally and emotionally centered.

Another thing that I would like to offer my perspective on is Thomas’s statements on autism being an extreme form of egocentrism. While being egocentric can be a part of someone’s nature, it can also be on purpose (and a lot of people seem to think that autistic people are self-centered on purpose). In my experience, it was the underlying neurological baggage that accompanied my autism that made me seem that way. For example, one of the neurological conditions that accompanied my autism was a visual condition called aniseikonia. This caused the perceived image on 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. Not knowing where you are in space can cause quite an amount of not only physical problems (such as eyestrain and headaches), but psychological ones, as well (such as anxiety). This, in turn, inhibits one’s ability to interact with the world properly and can unconsciously put an autistic person into a form of survival mode, where only the self reigns supreme. There are other neurological conditions that can accompany autism that can do this (and do a much greater job at it than aniseikonia alone can), as well, but I’ll be saving my descriptions of those other ones for my book.

In other words, neurological baggage that isn’t autistic traits themselves can amplify the autistic traits and twist them into something negative. For example, like my mother who shares autistic traits with me (but isn’t autistic herself), I can be perfectly fine in my own company and I like to do things in solitude. However, constant headaches and anxiety from vision problems sent me reeling from other people a lot the time. I was forced into exile when I wanted to be around others.

My journey in vision therapy was like peeling back layers of a disability onion. As my visual problems abated (and continue to do so), I found myself becoming able to read a greater variety of nonverbal cues and being able to understand other people more and more. This has helped with relatability issues with people who are less like myself. Overall, I can deal with a wider range of people than before I began vision therapy while retaining the best of my autistic traits and mitigating or transforming the worst. As I have experienced it, empathy and interconnectedness with others isn’t something that autistic people lack, but they are mostly dormant. They are hidden underneath a load of neurological baggage.

Another one of the greatest impressions left upon me by reading this book was that Thomas has had to find himself in the face of incredible adversity from within and without. Mindfulness has allowed him to accept imperfection and face life with incredible dignity. I, too, can attest to that. You have to accept imperfection while striving for perfection (without forcing it). Mindfulness allows one to face life with a certain grace that feels like you’re riding on air while defying the demons that desire to drag you down. In my case, I knew who I was when I was younger, but then I got severely knocked down and stayed down for years due to neurological baggage. I am reclaiming who I was bit by bit (and more) thanks to vision therapy and mindfulness.

That’s my take on The Autistic Buddha, a very genuine book that belongs on the bookshelves of anyone who has a stake in the realm of autism. I’ve offered my perspective on a life that is so similar, yet so different, from mine. That reminds me… it’s time to work on a post about free speech and its importance when speaking about such issues like autism. I don’t know when it’ll be ready, but it’s coming soon.

Tired, Old, Lazy, and Plain Dangerous Stereotypes – My Take on The Accountant (plus some quick references on relevant issues)

Content Alert: (discusses and includes language featuring harmful stereotyping, Theory of Mind, dehumanization of autistic people, etc. Trying to cover all bases here.)

Before I begin, let me note that I haven’t seen The Accountant yet. On one hand, I’d go watch it, but I have neither the time nor the money (not to mention that I still have yet to get a car again; I have no idea when I’m going to get a suitable replacement). On the other hand, why should I buy a ticket to a movie that, for all intents and purposes, lazily demeans people like me for the sake of a plot? I’ll pass and wait for it to come on one of the movie channels. (BTW, I’ve read spoilers of it already, because I don’t really care). This blog entry is a quick discussion over my feelings about it and links to resources about issues related to the harmful stereotypes that this movie perpetuates.

I’m coming out of my period of blog silence to talk about something that always concerns me: autism and empathy (plus its portrayal and speculation about it in the media).

There are going to be many links to many resources, so pardon this looking like rambling. But let me make it clear that every link I am about to post is worth your time reading.

There are three main categories of links below: (Autism and Empathy/Theory of Mind, Autism and Violence, and Autism and Alexithymia)

Let’s begin.

While I enjoy a good movie and am well aware that many are a portrayal of fiction, I hold my breath every time one of them deals with autism. Long before I found out about my autism and long before I watched Rain Man (which I didn’t watch until 2015), the movie that introduced me to autism was the 1998 movie Mercury Rising with Bruce Willis. Like Rain Man, it plays into the savant stereotype. It also gave me the idea for the longest time that autistic people are people who huddle in the corner screaming at the slightest change. No discussing how people can feel fine one day and bad the next. No discussing how verbal autistic people like me even exist or how, when we have meltdowns or overload (be it sensory, cognitive, or emotional), we can resemble those children “huddled in the corner.”

And before you say that I don’t take the plight of more severely impaired Autistics into account, let me redirect you to Join Elder Robison’s blog on Psychology Today (I hold many of the same views he does, thus these links):

Does Neurodiversity Whitewash Autism?

https://www.psychologytoday.com/blog/my-life-aspergers/201509/does-neurodiversity-whitewash-autism

High Functioning Aspies Don’t Know What Real Autism Is

https://www.psychologytoday.com/blog/my-life-aspergers/201412/high-functioning-aspies-dont-know-what-real-autism-is

Autism and Asperger’s: Two Separate Conditions or Not?

https://www.psychologytoday.com/blog/my-life-aspergers/201308/autism-and-aspergers-two-separate-conditions-or-not

The “Cure” for Autism and the Fight Over It

https://www.psychologytoday.com/blog/my-life-aspergers/200910/the-cure-autism-and-the-fight-over-it

That said, there is a lot that needs to be done in alleviating sensory impairments in more impaired autistic people. There are things that need to be researched and done to help more severely impaired autistic people be helped when it comes to life-threatening conditions that endanger them or put them at risk (such as epilepsy).

Here’s a quote from that last entry above:

The problem starts with autism itself, and how people see it. Unlike cancer and most other medical issues in the news, autism is a stable neurological difference. It’s not a progressive disease. At the same time, autism’s impact on people varies tremendously. Some people are totally disabled which others are merely eccentric. It’s no surprise that the individuals at the two extremes would have totally opposite views of their condition.

The “High Functioning” autistic group says, “We don’t need to be cured. We just need tolerance and understanding.”

The Highly Impaired group says, “Enough with the understanding! We need some cures, fast!”

Parents of affected kids say, “I want my kid to have a good life, whatever that means or takes.”

To a large extent, those points of view are mutually exclusive. HF people tend to see the HI desire for a cure as an indictment of their very being. “Get rid of autistic disability” morphs into “get rid of people like me,” in their minds. From the HI perspective, the desire for tolerance and the HF statement that, “we are fine the way we are,” seems to be a callous dismissal of their very real disabilities.

Mind you that there are nonverbal Autistics who can use technology to communicate, like Amy Sequenzia:

Assumptions and Ableism

There are also many others such as Dillan, who is nonverbal yet uses an iPad to communicate:

There are also people who blog about other nonverbal autistic people who communicate with technology. For example, Ms. Kerima Çevik’s excellent blog entitled The Autism Wars, where she blogs about her son and other nonverbal autistic people.

http://theautismwars.blogspot.com/

Where is Sharisa Joy Kochmeister? The War for Safety, Personhood, and Competence

http://theautismwars.blogspot.com/2015/07/where-is-sharisa-joy-kochmeister-autism.html

That’s plenty of resources about nonverbal Autistics for the time being.

And now, the meat of this blog entry.

I’ve been hearing about this movie called The Accountant, which is full of dangerous stereotypes about autism (and the now defunct diagnosis of Asperger Syndrome, something I would have gotten had I found out about my autism before 2013).

Have a look at the loaded language in this link (content alert for harmful, stereotypical language about autism):

‘The Accountant’ miscalculates how to reach its potential: 2.5 stars

http://archive.is/ls3fm

This review of The Accountant buys into Theory of Mind (like the movie itself appears to do), which I and many other Autistic self-advocates have a huge problem with.

If you don’t know what Theory of Mind (ToM) is, you’re not alone. It was first part of animal research into primates such as chimpanzees in the late 1970s. Later, with a flawed study by Simon Baron-Cohen (a cousin of Sacha Baron-Cohen, the guy who played Borat), he extrapolated that autistic people basically have an “impaired theory of mind.” This has opened the door to many practices and assumptions that assume that autistic people are somehow broken and less than 100 percent human.

Look at this archived copy of an article from TIME magazine to see a result of this harmful stereotype, thanks to Theory of Mind:

http://archive.is/NOST0

It would be smarter to be cautious, because the Internet’s personality has changed. Once it was a geek with lofty ideals about the free flow of information. Now the web is a sociopath with Asperger’s. (emphasis mine)

I’m too busy right now trying to finish vision therapy and doing research for my book to deal with all of this, but in the meantime, here are some links to articles that explain how Autistics like me can have a problem with Theory of Mind and how it is used to dehumanize people all across the autism spectrum (with some juicy quotes from each to entice you into actually reading them).

Category 1 of 3: Autism and Theory of Mind (i.e. – “Lack of Empathy”)

Review: Michelle Sutton’s THE REAL EXPERTS

Review: Michelle Sutton’s THE REAL EXPERTS

When autistic people speak, who listens?

Simon Baron-Cohen has built an entire career on his theory that autistic people cannot predict or interpret other people’s mental states – or, as he puts it, that we have no Theory of Mind (ToM).

Because we have no idea that other people have minds, ToM argues, we have no concept of audience.  Without a concept of audience, we can’t speak to persuade others.  What others?  We live in a perpetual echo chamber full of babbling; there are no others.  If we cannot speak to persuade others, we literally cannot participate in rhetoric or exist as rhetorical subjects.*  We’re the lone creature shrieking into the abyss, except even that image has no emotional content, because we have no concept of “lone” or “into” or “abyss.”

We can’t fathom audience, and this is SBC’s excuse not to give us an audience.  Because if I’m not “really” talking to you, if I cannot understand that there is an “I” who can talk “to” “you,” why should you listen?  I’m shrieking into an abyss.  Why bother?

The image gets attention because it’s heart-wrenching.**  The wrenching of the heart neatly covers for the fact that the game is rigged.

Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind

http://dsq-sds.org/article/view/3876/3405

Across disciplines, ToM operates as a binary between the humans who have it and those distant Others who do not. Particularly iconic of this has/has not dichotomy is the following passage from Baron-Cohen’s Mindblindness (1997): “A theory of mind remains one of the quintessential abilities that makes us human. …The theory of mind difficulties seem to be universal among such [autistic] individuals” (3). And so, if autistics possess anything, it is decided lack. On one side of the continuum are those whom Baron-Cohen has termed “mindreaders,” that is, those individuals whom we know to be human precisely because they possess a ToM. Meanwhile, on the other side of the continuum are the “mindblind,” that is, individuals who lack “one of the quintessential abilities” that makes one human. In other words: Humans are human because they possess a theory of mind, and autistics are inhuman because they do not.

An Empathic Debunking of the Theory Of Mind

An Empathic Debunking of the Theory Of Mind

Simon Baron-Cohen, the man who has single-handedly done more damage to the perception of Autistics than any other human being (though there are arguably a number of people vying for that title), depresses me.

I need to say that before continuing.

Simon Baron-Cohen developed the “Theory of Mind” based on the results from the now famous “Sally-Anne” test.  The Sally-Anne test, where the child is shown two dolls, is an example of dubious “science.”  Sally has a basket in front of her, while Anne has a box.  Sally, presumably made to move by an adult, which further complicates the test, puts a marble into her basket and leaves the room.  While she is gone, Anne takes the marble from Sally’s basket and places it in the box.  When Sally returns, the child is asked, “Where will Sally look for the marble?”  Only 20% of the Autistic children were able to correctly answer the question – Sally will look in her basket.

A Critique of the Theory of Mind (ToM) Test

https://autismandempathyblog.wordpress.com/a-critique-of-the-theory-of-mind-tom-test/

The most common form of the ToM test is called the Sally-Anne Test. The ostensible purpose of the test is to measure a person’s ability to attribute false beliefs to other people. In the original version, the clinician uses two dolls, Sally and Anne. Sally has a basket, and Anne has a box. Sally puts a marble in her basket and leaves the scene of the action. Anne takes the marble out of Sally’s basket and puts it in her box. When Sally returns, the clinician asks the child where Sally will look for the marble.

To pass the test, a child must say that Sally will mistakenly look in her own basket first, evincing the belief that Sally is unaware that the marble has been moved. A child who fails the test will say that Sally will look in Anne’s box, where the marble is actually located. In a 1985 study of ToM in autism by Simon Baron-Cohen, Alan M. Leslie, and Uta Frith, 80% of the autistic children failed this test. The conclusion drawn is that the autistic children have an impaired (or non-existent) ToM and cannot understand that other people have information and beliefs different from their own.

I am very bothered by this conclusion. Very, very bothered.

Saving a Theory, Dismissing Its Subjects

https://autismandempathyblog.wordpress.com/saving-a-theory-dismissing-its-subjects/

And then, I read a 2004 article by Uta Frith, and I moved away from my stance of critical detachment toward one of absolute moral outrage.

There I was, enjoying a quiet day at home, reading by the woodstove, minding my own business, and wanting nothing more than to have an enjoyably uneventful time, when I stumbled upon the following piece of remarkably nuanced thinking and stellar prose in Frith’s Emanuel Miller lecture: Confusions and controversies about Asperger syndrome:

“One way to describe the social impairment in Asperger syndrome is as an extreme form of egocentrism with the resulting lack of consideration for others.” (Frith 2004, 676)

Unwarranted Conclusions and the Potential for Harm: My Reply to Simon Baron-Cohen

https://autismandempathyblog.wordpress.com/unwarranted-conclusions-and-the-potential-for-harm-my-reply-to-simon-baron-cohen/

This is not about anyone hurting my feelings. It’s about the perpetuation of stereotypes and oversimplifications that, in my opinion, have the potential for tremendous harm. Consider the possibilities:

Autistic people describe our empathic experiences in detail, only to be told that we have such low empathy that we are the last to know it.

Autistic people protest abuse and ill-treatment, only to be told that we can’t understand other people’s motives and intentions, much less respond to them appropriately.

Autistic people are treated without empathy because other people believe that we have none ourselves.

Autistic people face lives of substandard care, isolation, and abuse because we are considered to have been born without a core component of humanity.

Note: I highly recommend that you read the whole of the Autism and Empathy blog.

You think autistic people have no empathy? My little boy is so empathetic it hurts

https://www.theguardian.com/commentisfree/2016/jul/05/you-think-autistic-people-have-no-empathy-my-little-boy-is-so-empathetic-it-hurts

But apart from all of that, the idea that people on the autism spectrum don’t know or care about other people is offensive and wrong. It makes their ability to navigate a path through this world so very vexed. Let’s be very clear: how people with autism might appear in company and what they know or think about, or care about, are quite distinct things.

My boy cares deeply about other people. He tells his little sister, his dad and me that he loves us many times a day. Sometimes he misreads people’s intentions – difficulty with interpreting facial expressions is a hallmark of autism. But he is so empathetic that sometimes it seems to literally hurt. He can’t bear to see me cry – it’s like he’s been stabbed. I have seen him, when another child is hurt, run over and pat the child and loudly console them (and sometimes he tells them that he loves them). He adores babies and told his five-month-old cousin the other day he was “the most beautiful baby in the whole, whole world”. He doesn’t say the “cool” thing; he doesn’t check his behaviour like a neurotypical kid would. He just does what feels right.

Category 2 of 3: Autism and violence

Adam Lanza and Look Me In The Eye

https://www.psychologytoday.com/blog/my-life-aspergers/201303/adam-lanza-and-look-me-in-the-eye

Every time there’s speculation about a connection between Asperger’s and murder innocent people are put at risk.  Many of us with eccentric interests have already learned the hard way how others may misunderstand our actions.  My own son fell victims a few years ago, when a publicity-seeking prosecutor tried to twist his innocent scientific experiments with explosives into imaginary terrorism.  That story is described in my newest book, Raising Cubby, which stands as a cautionary tale for what can happen when those of us who are different fail to understand how the public may misconstrue our actions, and how other people may try to twist our eccentricity into something much worse for their own petty gain. I’d like to see the question of what went wrong in Adam Lanza’s mind answered as much as you.  Unfortunately, they present speculation isn’t going to get us that data.

Asperger’s, Autism, and Mass Murder

https://www.psychologytoday.com/blog/my-life-aspergers/201212/asperger-s-autism-and-mass-murder

Whenever something horrible happens the public and the media look for answers . . . factoids to explain what may be truly inexplicable.   Whatever information can be discovered is tossed out into public view in the hope that somehow a bunch of discrete facts and data points will somehow provide the answers everyone is seeking.

[…]

Unfortunately, on other occasions, early speculation proves unfounded, wrong, or irrelevant.  When that happens, innocent people are often harmed by the rush to judgment.  I’m very concerned that is occurring right now, as the public digests news reports about the Sandy Hook school murders.

Reporters are saying the killer had Asperger’s Syndrome, a form of autism.  Every time a news story does that – by tying “killer” and “Asperger’s” in the same sentence – they are at some level implying that there is a connection between autism and mass murder.

There’s not.

Statisticians have a phrase for this situation:  Correlation does not imply causation.

The IACC Weighs in on Autism and Violence

https://www.psychologytoday.com/blog/my-life-aspergers/201212/the-iacc-weighs-in-autism-and-violence

There is no scientific evidence linking ASD with homicides or other violent crimes. In fact, studies of court records suggest that people with autism are less likely to engage in criminal behavior of any kind compared with the general population, and people with Asperger syndrome, specifically, are not convicted of crimes at higher rates than the general population (Ghaziuddin et al., 1991, Mouridsen et al., 2008, Mouridsen, 2012)

And finally, Category 3 of 3: Articles about autism and alexithymia, which is the fancy name for not being able to express and/or recognize emotions in mainly ourselves (and occasionally others)

People with Autism Can Read Emotions, Feel Empathy

https://www.scientificamerican.com/article/people-with-autism-can-read-emotions-feel-empathy1/

There is a persistent stereotype that people with autism are individuals who lack empathy and cannot understand emotion. It’s true that many people with autism don’t show emotion in ways that people without the condition would recognize.

But the notion that people with autism generally lack empathy and cannot recognize feelings is wrong. Holding such a view can distort our perception of these individuals and possibly delay effective treatments.

[…]

So we looked into the overlap between autism and alexithymia, a condition defined by a difficulty understanding and identifying one’s own emotions. People with high levels of alexithymia (which we assess with questionnaires) might suspect they are experiencing an emotion, but are unsure which emotion it is. They could be sad, angry, anxious or maybe just overheated. About 10 percent of the population at large — and about 50 percent of people with autism — has alexithymia.

Emotional Dysfunction: Alexithymia and ASD

Emotional Dysfunction: Alexithymia and ASD

A typical aspie-NT conversation about feelings:

NT: What’s wrong?

Aspie: I don’t know.

NT: You look upset.

Aspie: . . .

NT: Are you sad? Angry?

Aspie: I don’t know.

NT: It’s okay. You can tell me.

Aspie: . . .

NT: Fine. Don’t tell me. I was just trying to help.

When an aspie says they don’t know what they’re feeling, it’s a literal statement. We aren’t trying to dodge the conversation. We aren’t withholding information. We aren’t being rude, mean, cold coy or vindictive.

Alexithymia, not autism, is associated with impaired interoception

http://www.sciencedirect.com/science/article/pii/S0010945216300594

It has been proposed that Autism Spectrum Disorder (ASD) is associated with difficulties perceiving the internal state of one’s body (i.e., impaired interoception), causing the socio-emotional deficits which are a diagnostic feature of the condition. However, research indicates that alexithymia – characterized by difficulties in recognizing emotions from internal bodily sensations – is also linked to atypical interoception. Elevated rates of alexithymia in the autistic population have been shown to underpin several socio-emotional impairments thought to be symptomatic of ASD, raising the possibility that interoceptive difficulties in ASD are also due to co-occurring alexithymia.

Whew! All done! Hope you learn a lot reading these!

Silence in the Midst of Intensity

Hey everyone,

Just giving you all another little update.

I’m still taking care of myself, but I have been fairly silent on Twitter for some time now. Things have been intense for the past 6 weeks. In mid June, I got in two car accidents over the span of four days, with the second one totaling my car (the first one happened while riding with my parents). I now have no vehicle to call my own.

It’s hard talking about everything I’m going through, especially when I’m going through it; that’s for my book to tell you. I promise it’s going to be EPIC!

I’m also striving so hard to improve my quality of life. My planned YouTube channel is stalled because I live in an area with crappy broadband internet and I can’t afford a TV/gaming console capture card. I have to go over to my grandparents’ house to even upload a video. In fact, a lot of my plans are on hold for a myriad of reasons. It seems that every time I steam ahead that something halts my momentum.

Things kind of suck, but things aren’t 100% bad. At least I’m alive and not injured from the car wrecks.

Still alive… Taking care of myself…

As much as I want to write blog entries and stuff, I am constantly struggling with a lot of personal issues. Constant fatigue, writing my book, doing my therapy, etc. I hope to have the manuscript done by the end of the year.

And as much as I want to talk about what’s going on, I can’t do that right now. I’m focused on taking care of myself and finding ways to cope with everything. I still check my Twitter from time to time, but I’m so busy.

As an Autistic, taking care of myself is top priority. I am sorting out my place in the world and getting to know myself better. I hope all of you are doing the same!

Take care, everyone!

What I have learned about writing thus far.

Another day and another few pages of manuscript written.

It is also the first day of Autism Acceptance Month.

Not long ago, I had a phone conversation with Stereo Sue about many things: writing was one of them. In this vein, we talked about the writing habits of Oliver Sacks. Basically, he wrote a lot in journals to think. A video on YouTube also shows that he had the habit of carrying a notebook everywhere he went (one I have adopted myself). Check out the video below.

As I write my manuscript, I have been transported back in time to some very painful moments, such as the mental and emotional abuse I endured over my interests during my early adulthood from people I thought were my friends. Although vision therapy has made me much happier in general, it still hurts to think and talk about these moments. In fact, I will only mention a couple of painful moments of the nearly seven years of abuse I endured. I decline to talk about it in too great detail to this day, and very few people know the whole story. But I will tell it anyway, because I feel that writing and telling my story will play a role in autism acceptance.

Writing, I have found, is a messy process. It isn’t as linear as I thought because random memories resurface about my life on the spectrum. My notebook has random paragraphs and sentences detailing random moments I have remembered while away from my computer (high and low tech approach). The emotions follow later and give richness to the narrative.

At least modern technology allows those random thoughts to be sorted out. When I first started writing my book, I organized by logical categories such as “What is the Autism Spectrum?” and “The Particulars of Vision Therapy for Autistic People.” I made them their own separate files and typed as random thoughts came up. However, I had a lot of trouble remembering things this  way, so I decided to make a file called “Random Thoughts for Book” and typed them as they came. This produced far more than limiting myself with categories.

As I typed my random thoughts, it turned out that I could not tell the story of my journey in vision therapy without talking about my life on the autism spectrum, so I started new files by the periods of my life. My vision therapy journey might start later in the book, but many things led to that part of my life.

My book will portray the hopes and dreams I still have after being somewhat put partially on hold for 17+ years. It is a portrayal of my experiences of humanity; not only that, but it is a portrait of my own humanity itself.