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:
“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.”
“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.