I’ve Been Tormented By Horrific Thoughts My Whole Life

I’ve lived with depression for nearly two decades. I know it inside and out. Equally as long I’ve lived with anxiety. Yet not until now can I actually say I understand my anxiety. I’m still amazed at how long it’s taken me to come to terms with mental illness. It was always more complicated than I wanted to admit. This isn’t so surprising given my late-diagnosis of autism. But my autism diagnosis did not close the door, so to speak, on what has been a painful two decades of struggling to figure out if something is wrong with me. Indeed, it opened up a world of understanding. I can finally confront something I’ve been silent about since childhood.

I have generally always been an open and honest person. Lying is very difficult for me as I personally feel ashamed to do it. Lying to someone in person is most difficult of all because of the social skill required: being able to make eye contact and convey appropriate non-verbal communication via body language is not a strength of mine. Being able to lie to people in person requires the ability to convince with the right facial expressions. I do not have these “social skills” on the same level as a neurotypical person. My honesty in most things, however, has not stopped me from living in hiding from myself. It has not stopped me from being ashamed, and given that I’m not at all comfortable talking about anything emotional with anyone, I run from the shame, I keep it to myself and prefer to suffer silently.

But I think I’ve suffered silently long enough. It’s time for me to be open about my anxiety because I feel like it’s a positive step towards seeking help for something that nobody who knows me is fully aware of.

A profound melancholy is how I’d describe my personality to others if asked. A shadow cast of despair and self-loathing. This is depression. But there’s another side: since high school, I’ve experienced very violent, disturbing, and unwanted “intrusive thoughts” that I only this year learned are associated with Obsessive-Compulsive Disorder. During my autism diagnosis, my history of intrusive thoughts was only briefly touched on even though it started at the same time that depression hit me in middle and high school. Autistic people often have a range of other co-occuring conditions, some medical in nature like epilepsy or gastrointestinal problems, ADHD, learning disabilities like dyslexia or dyscalculia, sleep disorder, and probably most frequently mental illness. I am no different apparently. I want to be open about how much I’m actually struggling with mental illness. My self-esteem would improve if I didn’t believe I was sociopathic or even psychopathic. But my worst fear is that I won’t be believed by anyone. This is an invisible illness after all.

Experts call what I have “pure” OCD. It generally refers to a subtype of OCD that involves the unwanted intrusive thoughts that all people with OCD suffer from, only it involves no obvious compulsive behaviors. Hence its invisibility.

Anyone who owns a television has probably seen shows on TLC about the “bizarre” rituals of people with OCD. This has created an image, perhaps a stereotype, of what OCD looks like: for instance, of compulsive hand-washing or repetitively checking that all doors are locked. But, and I’ve learned this only recently, the obvious compulsive behaviors associated with OCD are not required to have OCD. For people like me, the compulsive behaviors can take place internally, in your mind, where nobody can see it. Doctor Ian Osborn begins his book Tormenting Thoughts and Secret Rituals: The Secret History of Obsessive-Compulsive Disorder:

I suffered obsessive-compulsive disorder myself while in medical training. Terrifying, tormenting thoughts often popped unbidden into my mind, causing surges of panic and piercing discomforts. The thoughts usually took the form of vibrant, violent images, for instance, of a knife being thrust into my flesh, or of my nose being scraped right off in a car accident. A particularly frequent one was that of my hand being punctured by a phlebotomy needle. I would have the sudden, intrusive image of me standing at a patient’s bedside ready to draw a sample of blood: I unsheath a large-bore phlebotomy needle, menacing, daggerlike in its appearance, and then inexplicably, instead of inserting the needle into my patient’s vein, I thrust it to the hilt into the thenar eminence of my hand. Upon the occurrence of this frightful fantasy, my hand would ache in a manner that seemed indistinguishable from genuine pain. I would shake it to make it feel better.

The word tormenting carries a lot of weight for me because it is the word I’ve used most of my life to describe the constant unwanted thoughts and images without ever knowing anything or having read anything about OCD. I once tried to describe it in high school, writing that images in my head tormented me all the time. I coped by closing my eyes and whispering “no” or “stop” over and over again. I would shake my head quickly as though doing so would erase the image. Sometimes I would want to just gouge my eyes out as though it was my eyes that caused me to “see” these disturbing images.

I saw (and still see) my family, my siblings being killed in the most horrific ways. I saw in intimate detail friends being stabbed or shot to death or beheaded. I thought about people I care about being hit by a car. When I lived for a short time in Providence, RI while attending school there, my girlfriend (now wife) Meg would visit. In Providence I lived downtown and had no car, so I walked the very busy city streets or took the bus. Because walking on the sidewalk with her triggered vivid thoughts of her being run over by a car, I insisted that she walk to my left so that I was always closest to the street.

I have thoughts about my children being harmed and constantly worry about them being in danger no matter how mundane the circumstances. I have thoughts daily about them being injured or killed by falling from the top of the stairs or falling over the balcony, and worse by my own doing. When my wife wanted to let our son climb up and play on playground equipment I continually argued that he wasn’t old enough for safety reasons. The age range says 5-12. Most parents will let them climb up and slide down with supervision. I, on the other hand, could only think about the unwanted images that popped into my head of him being hurt, falling on his head and becoming paralyzed. I become fixated on thoughts and cannot get them out of my head.

It doesn’t matter how irrational and disturbing. It seems there is no limit to what violence my mind is capable of imagining. It is not just autism that keeps me in the shadows. I’m so scared of hurting other people, physically or emotionally, that I’d prefer nobody get to know me. And this is despite the fact that I am what I believe a decent and caring human being. I would never hurt anyone and yet I’m so scared that I will that it keeps me in a chronic state of anxiety and fear. It keeps me locked away in a lonely world of what feels like endless thoughts. Only I now know that there is a name for this: OCD.

Just as vivid are the thoughts of my own death, in a horrific car accident, by several stab wounds, by hanging, by a bullet to the head. The images in my head are frequently so disturbing that I withdraw, feeling like I’m psychotic.

But I’m not. The problem lay in the fact that people with OCD confuse their frequent disturbing thoughts for reality. Thoughts of hurting someone, someone being hurt or killed, engaging in unwanted sexual acts, killing yourself, are not reflections of things you are actually going to do (for some, suicide can be an exception however.) But their disturbing nature and how and why they occur can easily make you believe that you must be a monster. Everyone has occasional intrusive thoughts that are so irrational and disturbing they are easily dismissed and forgotten about. People with OCD, on the other hand, live their lives in constant anxiety because they cannot escape no matter how hard they try or how much they want it to stop.

I am one of those people. I am tormented by my own mind. I am anxious all the time even if you can’t see it. I am thinking and thinking without end. I see horrific images in my head that can paralyze me, force me to “look away” even though you can’t, and to bang my head against a wall or car door window to make it go away. What I would give for some peace in my own mind.

Since high school I’ve felt like a “mental patient,” a sociopath, psychotic, a burden to others, better off dead. It has been a really painful life to live thus far. My autism makes emotional encounters extremely uncomfortable, so I prefer to hide, suffer in silence without burdening others. And I’ve done so for years. I’ve yelled “stop” and “no” over and over into every pillow I’ve ever owned. I feel like I’m a sick person and have believed at times I belong in a psychiatric institution. I have kept silent purely out of shame and embarrassment. I don’t think I want to do this anymore. I think maybe I’m not a bad person and deserve to live as “happy” a life as possible, like everyone else deserves. But it’s taken a long time for me to even recognize that I deserve to live a better life.


Internalized Ableism and the Burden of Disability


I have for years considered myself to be burdensome on my wife and now even my children. I have believed myself lazy and stupid, worthless, and better off dead. I still struggle regularly to see myself differently.


Despite having argued continually for some time against “high” and “low” functioning labels when arbitrarily applied to autistic people, the pervading influence of the ideas underscoring them has had a profound effect on the way I see myself. It is, in fact, very easy to internalize the assumptions of non-autistic people without ever consciously intending to. When I can hide who I am reasonably well at work, in public, it is easy to believe that maybe there is nothing wrong with me at all. In all honesty though, I’m not as good at hiding as I sometimes think. Coworkers I see regularly know well that I’m often very quiet and not social except in small amounts and with as few people as possible. And even these minor social “responsibilities” are enough to fill my social quota for the day.

But I still struggle internally with accepting that autism (and ADHD, though still undiagnosed) does in fact disable me in a number of ways. This is not because I don’t actually believe it is a disability. Rather, I see my son, the only other autistic person I personally know, and how his obvious disabilities present a challenge for him that I’ll never experience. This is not revelatory. The autism spectrum includes those with high support needs, some who’ll need support for the duration of their lives, as well as those who can live independently without assistance. But on that last point, that I can live independently without assistance: this is, I now understand, just not true. Yet, there is a pervasive myth surrounding the notion of living independently, a myth often maintained by parents of children with the highest support needs: that living independently is the single most important achievement for disabled people. That this is so desired is simply a reflection of the society in which we live: where the disabled are perceived as unproductive and financial and emotional burdens on families. Disabled people have been fighting for decades now to live independently, but this independent living movement is one of self-determination, moving beyond the previous century-and-a-half-long era of warehousing in institutions. It is not about any notion of living independent of assistance.

But really, living independently is pure fiction, an invention of individualist American fantasy, like the bed-time pull-yourself-up-by-your-bootstraps stories. No evidence exists to show that anything close to a majority of Americans will experience significant upward mobility in their lifetimes. Likewise, most people do require some form of assistance at some point in their lives, if not most of their lives. Nobody truly lives independent of everyone and the world around them.

If you have to borrow money from parents or other relatives or friends or in the form of a bank loan at some point in your life, you do not live independently. If you have to pay for living expenses or other essentials using a credit card, you do not live independently. If your car breaks down and you have to rely on family or friends or coworkers to get to work because you can’t afford to get it fixed right away, you do not live independently. If you cannot afford to pay out of pocket for college education, you do not live independently. If you work for a wage or salary, you do not live independently. Put simply: almost nobody actually lives independently. And yet disabled people who require daily assistance are often vilified as burdens. These ideas are so omnipresent that I have over many years internalized the belief that I am myself a burden on my wife and family.

I met my wife online back in 2001. At that time I was miserable in high school. I had a few good friends all of whom had been my brother’s friends first. To this day I have not been able to maintain a lasting friendship that I made entirely on my own, my wife aside. She is the most important person in my life aside from the few friends I still have.

I highlight this in light of the fact that I think frequently about what my life would look like were I on my own today. And it’s honestly overwhelming to think about how much I’d be struggling given how much I struggle now. My depression has at times become so severe that I’d spend hours in a day thinking about how worthless I was, how much better off everyone would be without me, and how killing myself would take away the pain.

Nearly my entire twenties was spent working jobs and trying to get through college. I have yet to succeed in either a job or college. After nine years spent going from one college to the next, six schools in all, I dropped out when I was a semester away from finally graduating with a bachelor’s degree. This was the result of the government cutting my student financial aid off, forcing me to have to pay out of pocket for my last two semesters. That was the end of that, and after nine years I was saddled with tens of thousands in debt with nothing to show for it.

I had not the slightest clue that I was actually autistic. I was certainly depressed, had been since high school. But that there was something else was a thought I generally suppressed, preferring to assume that I simply failed to try hard enough, was lazy, was trying to manage too many things at once. Indeed, I was trying to manage too many things. I often appeared to lack basic living skills, like self-organization of any sort, at school as a student, at home keeping track of money owed, be it bills, credit card payments, or just basic budgeting, and I seemed to have no sense of time constraints, constantly putting off required work in favor of doing what I preferred to be doing. I seemed to have no ability to maintain a basic schedule, constantly forgetting about responsibilities I had been told about recently because I never wrote anything down, assuming I’d remember it. My wife was frequently angry over her having to organize everything for me, like all my financial responsibilities, keeping the piles of bills I received in the mail in one place because once I saw it, I never opened it and would eventually lose it or throw it away with nary a thought to the consequences. To her, it seemed like she was having to take care of someone who had never grown up.

I’m overwhelmingly intellectually-driven. Put me in a situation where I’m expected to use my hands to work or build something and I’m likely to be lost. I have to have things shown me several times before I get it. Before I do anything, I have to think about it first. I approach everything from an intellectual standpoint, which makes me appear aloof and lacking “common sense.” I am not “street smart.” I am often naive to other people’s intentions, often assuming that most people mean well as I myself always try to do. I do not read people, do not look for their non-verbal cues, seem almost clueless to body language unless it’s obvious the emotions or feelings they’re expressing. My naivety has led me to be taken advantage of by others countless times and because I go out of my way to avoid conflict, I’m often the easiest of all pushovers, not wishing to fight or have to defend myself.

Moreover, my need for structure and routine was seemingly only subconsciously understood, or entirely misunderstood. One of the reasons I have struggled at the jobs I’ve worked is because of the lack of structure. Having different times several days a week to go in and leave work never allowed for a set routine, which I otherwise thrive on. Not always being able to leave work at exactly the time I was scheduled was and remains maddening to me. I cannot stand being unable to abide strictly by the times that are set, and jobs where the shift hours differ from one day to the next never allow for any kind of consistency. I abhor spontaneity, and being given other responsibilities outside the primary scope of my responsibility takes me away from the work I must complete within my set time constraints. For example, working in a grocery store and having to work in multiple departments outside my own within a shift throws off entirely the routines I develop working within my usual department.

I am rigid and inflexible by nature, but expected to always operate outside those bounds.

I could never take notes in my classes or keep papers and assignments organized in any discernible way. I am a single-tasker, so I am unable to listen to a professor while simultaneously writing down what needs to be copied for later use or reference. Alternatively, I cannot write down things on the board and simultaneously listen to what the teacher is explaining, which made math classes a nightmare. So I often took no notes. My brain seems unable to competently perform more than one task at a time. I often didn’t even write down due dates, thinking I’d remember them. Sometimes I didn’t write anything down because I didn’t need to, especially in my areas of interest as I often read obsessively, being way ahead of other students. I did not go to parties or drink or do other things associated with college life. I spent all free time in the library.

I now understand a lot more about myself than I ever did before. Previously I attributed all my problems to sheer laziness and stupidity. I saw myself as mildly intelligent and capable of the same work or better than that produced by classmates, and yet I couldn’t figure out why I seemed to be struggling so badly by comparison. My wife similarly worked a full time job while completing her degree, and she now has a master’s degree. Why did I end up in such differing circumstances compared with her despite similar capabilities? Why do I chronically seem like a grown-up child, unable to take care of himself? Why am I not like everyone else? Why do I insist on wearing the same clothes all the time? Only grey and navy blue, that’s it. Why am I always getting in trouble at work for failure to maintain compliance with uniform and grooming policies? Why am I so often late to work, to the point now where I have been suspended twice without pay and on the verge of termination.

In short, I need help. I am not afraid of admitting this anymore. I desire structure so much that I’ve often thought how much simpler life would be were I in prison where there is a guaranteed schedule to abide by, set in stone, freeing me to do what I wish and do best: read and think, without the need to think about when to feed myself, when to take my medication, when to shave, when to prepare my uniform for the next day. Indeed, my wife has to put up post it notes in more than one place in our home to remind me to take my medication which I chronically forget to do. Even the post it notes fail to work on occasion, but do help me stay on track generally. My wife has to remind me to set out my uniform the night before work. In fact I prefer working a job with required uniforms, takes the guesswork out of choosing which grey or navy blue shirt to wear.

The fact that I must rely on such structure and predictability and routine has led me to internalize feelings of being burdensome to my wife who has no need for any of it on the level I require, and who must look after my basic needs and responsibilities, and who must budget our finances to ensure I don’t run us into the ground with my impulsive spending habits. I often can’t help feeling like a child in his thirties, needing to be told how to take care of himself and organize his life. I have spent countless hours alone over the years in tears believing that I don’t deserve anything I have, that I’m worthless, hopeless.

And things have not gotten easier with my children. I found myself overwhelmed when attending my son’s IEP meeting. Sitting surrounded by seven other people at a table is overwhelming enough. That many people makes it difficult for me to even speak up even when I have something to say. My wife is able to keep track of the paperwork seemingly without an issue, and I’m still amazed by this. All the endless paperwork is kept neat and organized in a binder, from his early intervention meetings, to medical bills, to Medicaid and everything in between. I marvel at the phenomenon of the binder. All of my own endless paperwork and documents and bills and everything else is kept neatly organized in a piece of furniture with two drawers designed explicitly for the purpose of organizing papers. It is unbelievable to me. I can’t imagine the disaster I’d be in were I expected to organize everything on my own. Just the fact of needing to make a phone call is enough to shut my brain down.

Why can’t I just do my job like everyone else seems to be able to do? Why can’t I just pick up on things intuitively without needing extra time to process and think through it first? I know now why I am the way I am, but it has taken a long time now to accept that it is not stupidity or laziness.

I have a disability. And yet it’s amazing how I feel that when admitting this I must qualify it with but that’s not meant as an excuse. Why must disabled people with much greater challenges than I be seen as burdens when so few people actually live entirely independent of the people and world around them? Many require support in one way or another, some very significant support, but support is tied to notions of dependence. Non-disabled people are not vilified for their lack of total independence because they require much less accommodating by means of producing to “pay back” the burden they place on the state, family, or the bank. A society which values above all a person’s productivity is a society that must create disability, that must invent a separate cast of individuals who are perceived as less than others and less deserving of assistance on account of their inability to recoup the cost of the burden they place on everyone else. An individual only has dignity insofar as they work to maintain another’s wealth. This is why capitalism is so profoundly inhuman.

Review of No Right to be Idle: The Invention of Disability, 1840s-1930s

no right to be idle

[Note: This is a review of the Amazon Kindle e-book edition. Language is important in disability communities today. The language contained in this review, identical to that used by the author’s study being reviewed, was not considered controversial at the time in which it was widely used. Using this language in its historical context here should not be confused for any endorsement of it. Furthermore, being autistic myself and preferring the use of identity-first over person-first language means that I avoid phrases like “people with disabilities.” The disabled are referred to as disabled people. When referencing modern discussions and understandings of disability, I use appropriately modern terms, like “intellectual disability” or “cognitive disability,” rather than “idiot,” “feeble-minded,” or “mentally retarded.”] 

In No Right to be Idle: The Invention of Disability, 1840s-1930s, disability and labor historian Sarah F. Rose sheds light on the historical origins of disability as a social and political phenomenon. She traces the “invention” of disability through the rapid changes taking place in the decades following the Civil War as the US emerged as the world’s preeminent industrial power. On first glance you might question what a cognitively disabled individual has in common with a wheelchair user suffering from a chronic illness or with a former factory worker now only mobile with a prosthetic limb. Today, we call this “disability.” But how we specifically define disability today has not existed forever and all time.

Disability activists in the 1970s, influenced especially by the wider social movements of the era, grappled with the inequity and discrimination so central in their lives: if disabled people want to work and can work with appropriate accommodations in place, and moreover, be accepted within their communities, then “why can’t we?” Out of the disability rights movement of the time came the social model of disability. And Rose’s Invention of Disability fits firmly within the social model’s framework. Rose argues that while our modern political conception of disability comes out of the way disability was “invented” over time through a combination of social and economic changes and public policies, the way disabled people are commonly perceived as “unproductive” and dependent on assistance has remained constant, at least in the context of the way our society remains organized since the Civil War.

Rose traces the rise of nineteenth century “idiot” asylums back to Jacksonian era middle-class reformers steeped in the moral ethos of Protestant revivalism, what historians generally call the Second Great Awakening. These reformers espoused an individualist moralism concerned with changing the evils of modern society by improving the individual. No evil escaped their crusade: from the abolitionist movement against slavery, pauperism, prostitution, crime, lunacy, and later the “feeble-minded.”

The antebellum economy was still overwhelmingly agricultural and a feeble-minded family member could be cared for and learn to be productive on the farm or in the household. Moreover, feeble-minded family members could help care for the elderly in the home or other siblings when ill. These circumstances certainly did not exist for all families. In the developing towns and cities, frequent economic crises meant swelling almshouses and poorhouses. These housed the chronically unemployed (paupers), but also all manner of “lunatics” and “idiots” from families who could not afford to care for them. Penitentiaries also housed “idiot” criminals, their crimes usually a result of being abandoned in poverty by carers. The feeble-minded collected in almshouses or lunatic asylums and penitentiaries often came from poor families who abandoned them or for whom one or more family caregivers had died. Some were abandoned at birth and left in the care of orphanages, though most orphanages were unwilling to take in obviously disabled children, leaving the almshouse the remaining option unless another family or relative was willing to take them in.

The feeble-minded were treated, to this point, as an uneducable monolith. The work of a French doctor in “idiot” asylums in Paris effectively overturned these assumptions. Even the worst-case “idiots” were amenable to improvement, and the first generation of superintendents of asylums for the feeble-minded in the pre-civil war years took on the task of teaching “useless,” unproductive idiots the virtues of work. There was no hard definition of “idiocy” at this time. Rose states that idiocy “encompassed people with a wide range of impairments, including cerebral palsy, epilepsy, deafness, and what would later be described as autism, as well as cognitive disabilities that could arise from thyroid disorders, head injuries, and high fevers. But in general, “idiot” referred to a person who was not able to care for himself or herself, do useful labor, or understand the legal consequences of his or her actions.”

The feeble-minded then have a variety of recognizable diagnoses today, including intellectual disability, Down Syndrome, and autism. Because autism was not initially described until the 1940s, we can reasonably conclude that a significant percentage of those referred to as “idiots” were autistic, likely with accompanying cognitive disabilities. Moreover, because autism is recognized as a spectrum condition, the terms “imbecile” and “moron” used in the context of the eugenics movement would similarly encompass unidentified autistic individuals. While early asylum superintendents classified the feeble-minded based on perceived educability and productive capacity, eugenicists would later perfect the hierarchy around heredity with “low grade” and “high grade” idiots at the bottom, classified on their perceived uselessness to the human gene pool; imbeciles occupied an intermediate position between high grade idiots and morons. The eugenicists’ moron, considered the highest grade of feeblemindedness, would today be an individual with a “mild” intellectual disability but capable of work and obedience, or even an individual labeled as so-called “high functioning” autistic. At the time, however, all manner of individuals were classified as feeble-minded, including those who today would not be recognized as disabled at all, but who were simply born into a life of poverty, crime, and other “sins” like addiction or prostitution or homosexuality.

The goal of the earliest asylums for the feeble-minded was to educate their pupils to be productive members within their families and communities. This often involved teaching self-care skills and hygiene, taking the “burden” off families whose labors were better spent in the home and on the farm. Success was achieved when a pupil could demonstrate her or his ability to work and thereby avert dependence on charity and public assistance. At a time when reformers, especially abolitionists, extolled the virtue of “free labor,” that is compensated labor and self-sufficiency, dependence on public assistance was associated with iniquity.

Rose quotes Boston reformer and asylum superintendent Samuel Gridley Howe, who in 1848 anticipated some of the ideas of the eugenics movement half a century later. She highlights Howe’s influential 1848 report because the ideas contained therein would shape public discourse around the feeble-minded for decades: as burdensome, “parasitic” dependence on families and the community as well as the contaminating effect of idiot “immorality” on local communities and society at large.

There are at least a thousand persons of this class,” said Howe, “who not only contribute nothing to the common stock, but who are ravenous consumers; who are idle and often mischievous, and who are dead weights upon the material prosperity of the State. But this is not all; they are even worse than useless; they generally require a good deal of watching to prevent their doing mischief, and they occupy a considerable part of the time of more industrious and valuable persons…. Every such person is like an Upas tree, that poisons the whole moral atmosphere around him.

At this time, the poor were popularly perceived to belong to two groups: the deserving and undeserving poor. The deserving poor included widows, orphans, or “unproductive” individuals with congenital or acquired physical impairments, people who could not easily be blamed for their immorality. The undeserving poor were chronically unemployed paupers given to alcoholism, crime, madness, or licentiousness. With the rise of the eugenics movement, feeble-minded women became especially important as they could pass on their “idiocy” to future generations.

In response to a rapidly changing economy, the decades following the Civil War saw the goals of “idiot” asylums change from one of education, productivity, and reintegration into the community to one of “custodial” care, that is permanent institutionalization.

It is easy to read our present understanding of disability and disabled people back into history. Doing so reveals that disabled people have always existed. Yet how people with a variety of congenital or acquired physical impairments have integrated into or been marginalized within a given society has a lot to do with the way that society is organized to meet people’s subsistence needs. In A Disability History of the United States, historian Kim Nielson shows us how various North American indigenous groups understood disability: as a natural part of life. The value of an individual was based around her or his contribution to the community. An individual was not cast out for an inability to contribute on the same level as another. Disability was understood as a natural occurrence, some born impaired, others sustaining injuries in war, others falling ill. Your contribution to the community might change following an injury; an individual born impaired may never join a war party but contribute elsewhere in the maintenance of the community; illness and old age also meant changing roles.

Not so dissimilar, Rose states that in the antebellum decades, families saw their feeble-minded children or otherwise disabled family members as falling on a “spectrum of ability.”

Families did not view productivity in the simple black-and-white terms suggested by asylum superintendents, nor did the ability or inability to do useful labor determine an individual’s value in their eyes. Rather, relatives understood their “idiotic” children in light of the fact that people with diverse bodies and capacities had long performed domestic and manual labor in an economy and society of farms and small communities; such an economy also helped to sustain relatives’ capacity for caring. Indeed, such individuals were seen as simply part of a broad spectrum of productivity that varied according to age, gender, and ability.

The rapid transition to an industrial wage labor economy had profound effects on families’ capacity to care for disabled children or otherwise disabled family members. Men and women compelled to labor in factories for a wage made families more vulnerable than ever to economic crises, and this had a significant impact on the ability of families to house and care for their disabled children.  

Asylum superintendents began to see that returning feeble-minded pupils to their communities as moral, productive contributors required that jobs actually be available for them. But the changing social relations of industrial capitalism threw a wrench into traditional family structures. Initially, asylums wished to focus on those pupils from families who could pay privately for their education and personal upkeep. But inevitably as demand grew owing to the “success” of feeble-minded children returning home, asylums were forced to take on more and more public charity cases, often some of the “worst cases” wallowing in poorhouses with nowhere else to go aside from a lunatic asylum. During the economic crisis of the 1870s, superintendents found there was no available work to return successfully normalized children to within their communities, leading to superintendents’ gradually changing priorities away from education and discharge from the facility towards permanent institutionalization. Educating and instilling the virtues of work eventually gave way to training inmates to be productive within the confines of the asylum. Asylums had to rely on private charity and public funds to maintain themselves. Some inmates could be trained to labor unpaid to help offset the costs of institutional maintenance. And so developed within the asylum a workforce divided on gender lines, whereby female inmates labored unpaid in domestic upkeep of the asylum as well as in caring for the uneducable “worst cases,” while male inmates labored unpaid in the construction of separate buildings, in the boiler room, operating laundry and other equipment, and especially on segregated farms that helped offset the cost of feeding the asylum’s growing permanent population.

Asylum inmates, at least the ones perceived most amenable to training, education, and compliance, desired finding work for themselves outside the institution, and a few were successful as hired farm hands, working under supervision of a shopkeeper, or domestic workers. Nevertheless, most did not find anything close to this kind of “success.” Given the flood of immigration in the post-civil war years, the cognitively disabled were at a huge disadvantage in competing with “able-bodied” workers on the labor market, especially during economic downturns. Without family or community support, those lucky enough to be discharged from the asylum, unable to find work, would return back to the asylum or languish in poorhouses.

The transition to mass production factory work and the logic of competition inherent to capitalist production made the feeble-minded worker an inherently unreliable investment. The feeble-minded capable of work, however limited in capacity by the standards of efficiency, would come to be largely excluded from the labor market.

Crippled Workers

Working conditions in nineteenth and early twentieth century industry were generally appalling. Workplace injuries, often debilitating, were guaranteed for many, if not most depending on the industry. Accidental death on the job was not uncommon. Workers risked amputated limbs, fingers, permanent paralysis, traumatic brain injuries, burns. In fact, disabling injuries were so common that Rose describes how it was understood as a quasi-cultural marker of poverty and working-class life. Injuries that we would rightly see today as disabling were seen by workers as a minor setback (or none at all) in the way of getting back to work.

Similar to the way disability within middle-class and farming families was understood as falling on a spectrum of ability, whether individuals were born disabled, developed acute and/or chronic illnesses, or became impaired by injury, workers acquiring disabilities from workplace injuries were not automatically barred from employment. But also similar to the way rapid economic and social change necessitated change to family structures and its ability to care for a feeble-minded child or adult within the home and community, the logic of competition inherent to capitalist production meant that disabled workers would increasingly be shut out from the labor market as inefficient. Given the choice, what capitalist would invest in a disabled over a non-disabled worker, given the disabled worker’s inability to produce surplus value at the same rate? This was a time of both mass immigration and the rise of mass production, and there was no shortage of cheap able-bodied labor to fill unskilled positions. The rate of exploitation is higher for the able-bodied.

Rose traces the rise of modern political conceptions of disability through rapid economic and social changes which would come to effectively exclude from the labor market both those with congenital disabilities and physically acquired workplace injuries, gradually creating a separate class of individuals permanently dependent on public assistance, exactly what reformers steeped in the Protestant work ethic wished to avert. Ironically, Progressive era public policy reform efforts like the rise of Workmen’s Compensation laws served to further exclude disabled workers from the labor market. Rose illustrates how the rise of Workmen’s Compensation laws in the first decades of the twentieth century compelled employers to introduce physical exam requirements prior to hire, effectively barring many disabled workers from employment as the liability of a previously injured worker who may sustain a second injury on the job became too great.

Rose dedicates an entire chapter to Henry Ford of Ford Motor Company for his initial willingness to hire on disabled workers. She shows that Ford was an outlier among industrialists. Because Ford relied so much on piecework in his plants, many jobs could be found, and indeed were found suitable to disabled workers. Ford plant managers were willing to move disabled workers to different departments if need be. In some instances, blind workers were capable of performing their job better than seeing workers.

Workers injured in a Ford plant were often able to come back to work at the same pay rate despite the severity of the injury and the need to be placed elsewhere in the plant. Ford proved to be the exception to the rule, however. By the 1920s, with the rise of Workmen’s Compensation laws, Ford was no longer quite the exception. In court, Ford actively went after workers injured on the job to deny their claims in some cases. Nevertheless, Ford employed more disabled workers into the 1930s than any other comparable employer. For Rose, this is evidence that with the right accommodations, disabled people need not be excluded, even in heavy industry.

Rose also highlights Goodwill Industries’ sheltered workshop experiments employing disabled workers. Like reform movements before it, the goal was to instill the Protestant work ethic, the virtue of work, to reduce the growing sins of pauperism, vice, and dependence.

Goodwill Industries was just one of hundreds of sheltered workshops to emerge during the tail end of the nineteenth and the early twentieth century. It exemplified how the Protestant work ethic and fears about encouraging dependency shaped how workshop managers approached the problem of “disabled” people–those whose bodies had been deemed largely unfit for wage labor by a changing economy and public policies.

Rose continues:

…the founders of other sheltered workshops hoped to address the ways in which mechanization, employers’ growing desire for workers with fully intact and interchangeable bodies, and workmen’s compensation laws had begun to exclude disabled workers from the mainstream labor market and self-support.

But, nevertheless,

…sheltered workshop managers discovered that even their institutions could not escape the logic of efficiency that had so pervaded the mainstream economy. To ensure Goodwill Industries’ survival, [there was] little choice but to adopt piecework methods, rate workers by efficiency, conduct time-motion studies, and limit the number of disabled workers hired.

Rose admits that Ford did not hire disabled people as a gesture of philanthropy. She argues he had an advanced understanding of the modern industrial economy he operated within. But while the story of Ford initially hiring disabled workers on a scale incomparable to other industries is an interesting one, I fail to see it as evidence of what could have been had other employers followed suit. Ford being the exception to the rule requires us to focus on the rule, and the rule is the logic of capitalist accumulation and competition. A capitalist ignores the logic of competition at his own peril, and in the context of rapid economic expansion, the inefficient must come to rely on public assistance and charity owing to their inability to be exploited at the same rate as the able-bodied.

Today, disabled unemployment remains twice that of the non-disabled. The problem of unemployment remains especially significant for the cognitively or otherwise neurologically disabled despite federal protection in hiring and firing from the Americans with Disabilities Act of 1990. The astronomical rate of unemployment among autistic adults today serves as just one example of this. Rose’s work in No Right to be Idle is important because she sees those with cognitive disabilities and those with acquired physical impairments as intersecting at a certain point in US history, creating the disabled generally as a heterogeneous group apart from mainstream society. The social model of disability theorized decades after Rose ends her study proves the extent to which disability was entrenched as an entity unto itself, with an entire subsection of the US population marginalized as “unproductive” and dependent on public assistance.

By the 1920s, people with many different types and origins of disabilities had been pushed out of household economies and the paid labor market… Their bodies were now deemed unproductive, or insufficiently productive, by employers and lawmakers–a shift compounded by changes in family capacity, the rapidly evolving labor market, public policies that sought to deter dependence, and the mutability and complexity of disability itself.

But “disabled people continued to seek paid work and to labor, albeit often for minimal or no pay, while often being told that they had “no right to be idle.” “…the common twentieth-century notion of equating “disability” with unproductivity, poor citizenship, and dependency on public or charitable assistance was, truly, an invention.”

You might note that I’ve mentioned little about the experience of disabled black people in this review. Indeed, being black and disabled requires its own separate treatment altogether. Black people were in many cases already excluded from employment on the basis of skin color before their disability even need be considered. Like disability from injury in white and immigrant working-class communities, disability within the black community was also a hallmark of poverty, though in the post-Civil War years many black people were disabled owing to the abysmal conditions and treatment on plantations and the unpaid labor they performed as slaves.

Disabled black people were discriminated against as World War I veterans attempting to gain access to vocational rehabilitation, something Rose talks about in the last chapter of her book. But Rose’s study left much to be desired in telling the history of disabled black people following the Civil War, and this is not meant as criticism, but rather that it deserves its own study. “Idiot” asylums held many fewer black inmates than whites. It is unclear if this was intentional or not. Rose highlights the case of a black feeble-minded woman who became well known at the Rome State Custodial School in Rome, NY. She was one of the first female inmates paroled at the institution, which developed on a segregated colony model. The school sought to teach work skills that could translate into productivity offsite in institution-run “colonies.” Matilda Connor, “one of the few African-Americans at the [Rome State Custodial School], may have been one of those who preferred the community of the asylum.”

Despite receiving praise for her work ethic and musical talents in nearly every issue of the Rome Custodial Herald [asylum-run newspaper], Connor remained at the asylum throughout the 1910s–perhaps by choice. Instead, she ran the “girls’ sewing room,” learned to play the viola for the institution’s orchestra, and became well known as the ever-reliable “telephone girl” for the asylum.

Rose highlights Connor only to show how “some inmates built communities within the asylum.” Rose also mentions the story of an African-American shipbuilder who after sustaining a leg fracture could no longer work. Being effectively barred from returning to his previous job, he went on to form his own business. This is an extreme example unlikely replicable for most black workers. There is much more to be told about the story of black disabled people, in state-run asylums or in and out of the workplace.

Institutions for warehousing “idiots” declined by the second half of the twentieth century giving way by the 1970s to the independent living movement, which sought to remove the intellectually disabled from abusive asylums and segregated farms in favor of community-based living. Nevertheless, the way our society is organized makes it incapable of ever truly integrating them as “productive” workers. Little different from postbellum America, the value of an individual is necessarily based on their productivity, on their ability to produce profit for an employer. Today, section 14(c) of the Fair Labor Standards Act allows for disabled workers to be paid at subminimum rates.

The US Department of Labor states of section 14(c) of FLSA:

A worker who has disabilities for the job being performed is one whose earning or productive capacity is impaired by a physical or mental disability, including those relating to age or injury. Disabilities which may affect productive capacity include blindness, mental illness, developmental disabilities, cerebral palsy, alcoholism and drug addiction.

Rose’s work in No Right to be Idle is to be commended for pushing the social model of disability forward by revealing the social and economic changes underscoring concomitant changes in public perception of bodies and minds born impaired or acquiring impairment in the workplace. She asks us to consider what about impairments of whatever sort need be political. She shows us that historically disabled people do want to work, do wish to contribute to and be accepted as part of their communities. My question for Rose is whether she concludes, in the end, that liberal reform is ultimately capable of “solving” the problem of disability. I do think reforms can improve the quality of life of disabled people. But the logic of capitalism that created the disabled as a separate class of citizens cannot be reformed away. Henry Ford does not point any way forward. Middle-class moralism that sees an end to society’s ills through changing individuals is equally a dead end. An entire reorganization of the way human beings produce for their subsistence needs is required. A society that values individuals above all on their ability to produce profit for an employer will always require inventing a class of “unproductive,” poor and dependent people. It follows that accommodating the needs of variously disabled people would after decades of fighting require federal legislation to guarantee basic civil rights and protections. This is not and will never be enough.

The autistic community today has for decades now fought for acceptance of neurological differences within communities and in the workplace. Autistic people have argued for decades now that autism comes with skills that many employers value in their employees. Some employers, largely tech giants, have begun to respond with hiring programs designed to employ autistic people. This is important given the context of staggering unemployment for autistic adults. However, the largely liberal framework of identity politics that pervades disability rights today is incapable of addressing what the social model of disability sought to reveal: that it is the way our society is arranged and organized that oppresses disabled people. Winning employment for some autistic people is undoubtedly a worthy achievement. Long-term however, the heterogeneity of disability and disability rights politically is disarmed by a focus on winning the right of disabled people to be exploited by employers that have excluded them for decades. Only a thorough reorganization of our society based around meeting the needs of all over the prosperity of a handful will move the dark and shameful era of treating disabled people as less than human into a museum where it belongs.


Response to a Critic of the Neurodiversity Movement

Thomas Clements has concerns about the neurodiversity movement. (For purposes of simplicity I will use ‘NDM’ to refer to the neurodiversity movement henceforth. When specifically referring to the body of ideas that inform the NDM, I will spell out ‘ND paradigm.’). To be sure, the NDM has no shortage of detractors. But while many of the arguments levelled against the NDM amount to convenient straw men, Thomas raises concerns I feel are worth addressing specifically because he claims to embrace the ND paradigm himself. What follows is a number of questions I have in return for him.

Thomas believes that the ND paradigm makes sense for autistic people like himself but ultimately breaks down when extended to the “severely disabled.”

He seems to be writing in defense of struggling parents whom the NDM allegedly fails to empathize with. Against these parents is some monolithic movement of “fanatical” young autistic adults who will stop at nothing to oppose “severely” autistic children being treated or even cured despite the wishes of parents. These people, or some of them at least, have chosen autism as an “edgy” identity or lifestyle choice. This is an interesting development indeed, if true. Speaking for myself, given the life I have lived to this point, I find the assertion that my autism might simply amount to some bizarre lifestyle choice or identity positively insulting.

While I want to address these claims, I am under no illusion that anything I say here is going to change Thomas’s mind and I have no problem with that. As an aside, unfortunately Thomas will have to realize that his wish to see the pathology paradigm remain in place for an entire subset of autistic people will inevitably associate him with some uncomfortable “allies.” Like, perhaps, the first commenter on his article who describes the NDM as “Marxism for mental handicaps.” This is followed shortly thereafter by a mercury poisoning conspiracy theorist.

That Thomas finds some NDM circles questionable is not primarily my concern. I’m more interested in who he is ostensibly writing in defense of: parents and families with “severely disabled” autistic children. To Thomas, the NDM leaves these families out in the cold. Thomas makes reference to how complex autism is and that we fail to properly grasp the reality of people’s lives. Autism is not reducible to mere “differences,” he says, reminding us that autism is first and foremost a disability, as though this is somehow a revelation.

Let’s make sure we actually understand the pathology paradigm and why the ND paradigm aims to change the discussion around autism. Some parents, perhaps many, want nothing more than to bring back Leo Kanner’s “rare childhood disorder,” when autism was considered a rare debilitating disease (of course, it still is considered this by many.) They want the diagnostic criteria to reflect the differences between autistic people rather than the similarities. They believe that the decision to remove Asperger’s Syndrome in the criteria was a fatal error. If they could, they might even do away with the spectrum model entirely as they prefer to see their children as “brain damaged.” If someone like me can share a diagnosis with their faecal-smearing and head-banging child then “you can have the label,” as many parents will say.

Thomas empathizes with this general sentiment, apparently suggesting that accepting autistic people as autistic people is only reasonable so long as you aren’t engaging in what he calls “evidently pathological” behaviors. Treatment or even a cure should not be written off.

How does the NDM include people with high support needs? Thomas seems to believe that because many autistic people cannot verbally express that they even understand they are autistic that the ND paradigm fails to capture their complex set of behavioral and medical needs. How does a “severely disabled” autistic person positively express that their autism is central to their identity?  

The NDM that I know overwhelmingly acknowledges that autism is a disability, that it often comes with significant impairments requiring life-long support. That for some it does involve aggressive behaviors that potentially put the autistic person and/or caregivers at risk. Autism often co-occurs with cognitive disability, like with my son. His autism has been found to result from a de novo mutation associated with intellectual disability. The fact that autism is diagnosed based on observable characteristics can make the spectrum model seem tenuous. Some researchers believe, and undoubtedly some parents wish, that autism as a diagnosis will eventually change as its myriad etiologies are discovered by geneticists and described with hyper-specificity. What results in autism “features” or “behaviors” in one individual can be different for someone else. Autism can be hereditary or the result of a random mutation. It is the random mutations that are often associated with “severe” cognitive disabilities. The spectrum model, nevertheless, still makes most sense given our as yet limited understanding of the specific and varied genetic origins of autism. When seen through the lens of pathology, the primary reason for locating the origins of autism is to develop more specific “treatments” to augment the one-size-fits-all therapies common today. And of course to cure it.

Alternatively, the NDM asks why research funds, limited as they always are, must go towards locating the specific genetic basis of autism when autistic people themselves (and their families) could benefit directly with accessible support and alternative communication services. When Thomas states that “scientific investigation” is needed, he seems woefully ignorant of the fact that scientific investigation has proceeded apace for decades with nary a cure in sight. And because an overwhelmingly pathological perspective pervades public discourse around autism and the “scientific investigation” into it, as the slow-going “science” fails to satisfy cure-hungry parents, therapeutic (ABA) and harmful bio-med pseudoscience emerges through the backdoor to fill the “treatment” vacuum. Thomas states that caregivers could be “forgiven” for wanting a cure for their “evidently pathological” children. The NDM says that there is another way, and moreover, that forgiving parents for the effort expended on anti-autistic bigotry when accepting and supporting their children is also possible is unacceptable.

Thomas states that the NDM has come under the influence of “fanatical” and “cult-like” elements. This is an interesting choice of words. Personally, I’d be more likely to ascribe an insufferable cult-like fanaticism to “autism moms” deliberately poisoning their children with chlorine dioxide. But far be it from me to discern the difference between people engaging in harmful abuse with scarce accountability versus some individuals online expressing ideas I don’t agree with.


Thomas states:

It seems that neurodiversity has been infiltrated quite insidiously by a postmodern ethos that attempts to turn autistic people into an oppressed group to be used for political gain. A liberal spirit of free and vigorous discussion seems wanting as neurodiversity proponents eschew alternative viewpoints and live in an echo-chamber of mutual-validation and political correctness.

Autistic people are an oppressed group whether Thomas believes this or not. Is Thomas seriously arguing that autistic people–or all disabled people–do not face overwhelming discrimination and inequality? If for Thomas this is somehow up for debate than I’m afraid there isn’t much more I need say. I’m going to hope that this was just poorly worded or thought out.

I’ll need to be filled in on what the NDM was like prior to this “insidious” infiltration as I can’t say I’m presently aware there was another–more reasonable?– movement once. I have no idea what Thomas means by “political gain.”  

Thomas reports that “neurodiversity proponents eschew alternative viewpoints and live in an echo-chamber of mutual-validation.” I cannot confirm nor deny the validity of this claim because I don’t presently participate in any specific online ND “circles.” I know that I have not always agreed with everything I’ve read within online ND groups. Nevertheless, “eschew[ing] alternative viewpoints” and living in “an echo-chamber of mutual-validation” sounds like an apt description of every online ABA community, homeopathic cure community, “autism mom” community, and anti-vaccine community I’ve yet encountered.


Nick Walker states of the neurodiversity movement:

The Neurodiversity Movement is not a single group or organization, is not run by any single group or organization, and has no leader. Like most civil rights movements, the Neurodiversity Movement is made up of a great many individuals, some of them organized into groups of one sort or another. These individuals and groups are quite diverse in their viewpoints, goals, concerns, political positions, affiliations, methods of activism, and interpretations of the neurodiversity paradigm.

I highlight Nick’s words here to emphasize that not everyone who considers themselves a part of the NDM will agree with each other at all times and on every important question. Since my son was diagnosed I have simply come to embrace the ND paradigm because the alternative is intolerable to me. Every one of us is valuable no matter the support required, as children and as adults. The ND paradigm is above all a framework of basic human rights and dignity. An autistic person is not required to express that their autism is central to their identity, that they “love” their autism, that they don’t want to be cured. The NDM wants to push public discourse on autism away from a disease model toward one of acceptance regardless of support needs.

In fact, I think the NDM is important above all because of just how vulnerable many high-support-needs children and teens and adults are. There is no exclusionary clause within the ND paradigm that says if you cannot express orally or otherwise that you understand you are autistic, or if you desire a cure, that you need not apply. If my son grows up and decides he wants to be cured, that is entirely his decision (assuming a cure exists, whatever that would even look like.) It is certainly not my nor anyone else’s right to force it on him or deny it to him if it existed. In the meantime, my wife and I will do whatever is within our abilities to foster an accepting and loving and accommodating environment no matter the sacrifices we must make.


Thomas says that “severe” autism “can be deeply troubling to see.” He says he’s seen kids and adults who are “incontinent and have to wear diapers,” and who engage in all manner of “disturbing behaviors, and who “have a very poor quality of life despite all the provisions made for them.” He states that autism like this “merit[s] a lot of scientific investigation and potential treatments … to mitigate dangerous and disturbing behaviours,” (emphasis in original.)

Ok, Thomas, so you’ve witnessed autism. So have I. So why then do we arrive at such diverging conclusions? Thomas evidently appears to be unaware that statements relative to another’s quality of life is entirely subjective. Without a doubt, one has only to perform a cursory YouTube search to “witness” how terrible autism really is. In real life, watching Youtube videos where parents capture their child’s “troubling” and “disturbing” behaviors on camera does not actually provide evidence for anything other than the fact that the parents want the world to see a side of their child that they’d prefer never existed. The ubiquitous pathology paradigm has created a culture where it is entirely normal and justified for parents to turn their children into online zoo exhibits. For the last time, no reasonable person denies that autism comes with challenges, for some very significant challenges. But if you believe that the ND paradigm is discredited on this basis then you fail to understand it. All the research funds wasted on locating the myriad origins of autism could go toward developing support technologies or treatments for co-occurring conditions to help those with the highest support needs live the best lives possible.

Aggressive behaviors can result from an inability to communicate pain or discomfort to a caregiver. Undetected mood and/or anxiety disorders can similarly result in aggressive behavior. What has yet to be definitively proven is that autism itself is the cause of aggressive behavior. This does not stop Thomas asserting as much, curiously absent any evidence.

Autism often co-occurs with a range of other diagnoses as well. Why this is still remains unknown. ADHD, as an example, has definitively been found to frequently co-occur with autism. More serious is epilepsy. According to Thomas, some have “epileptic fits,” though what an epileptic “fit” is I could not say. I do know what a seizure is. Maybe that’s the word he was looking for. I (barely) pay my bills working as an Emergency Medical Technician. My workplace is an ambulance. I have helped care for more people with various seizure disorders, children and adults, than I could possibly account for. The vast majority of them are not autistic, just in case Thomas was unaware that epilepsy and autism are two entirely different things. You could treat a medical history of seizures without needing to “treat” autism.


“Moralising Crusade”

Thomas states that in its “moralising crusade,” the NDM will “aggressively oppose any treatments and medical interventions for the most disabled autistic people.”

Disparage the NDM as a “moralising crusade” all you want Thomas. Only to be fair, you also have to acknowledge the other “moralising crusades” that have actually done real damage to autistic people. Autism Speaks has been on an expensive moralising crusade for years, as they said in 2007 on their merger with Cure Autism Now: “to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism…” The press release continued: “A unified autism community is better prepared to ensure that the general public is aware of and responsive to this national healthcare emergency.” And of course, we know that year after year, the money they raise rarely makes it into services that directly support autistic people.

Oh, and just so we’re clear, Jonathan Mitchell is certainly not the only anti-neurodiversity autistic out there. The long-running site Age of Autism (“Daily Web Newspaper of the Autism Epidemic”) is on a similar moralising crusade, to get the public to “wake up” to the reality of the epidemic at our doorsteps. Anti-vaccine purveyors of homeopathic pseudoscience and shock troops in the war against neurodiversity, they’ve even had a number of “Aspies” writing for them, like Jake Crosby, among others. Jake once contributed a short blog entitled “A Glimpse Inside Asperger’s Syndrome.” In describing his disability, I related to everything. But dare I say it was even worse for me! I struggled so badly in college that I ended up having to drop out, failing to even graduate after nine years spent struggling across five different schools. And yet I somehow managed to avoid landing in the waiting arms of an anti-autistic group of parents cynically using me to justify their bigoted moralising crusade.

Another anti-neurodiversity hit piece from Age of Autism was written by some homeopath who apparently blames his Asperger’s diagnosis on the aluminum contained in early childhood vaccines. Maybe Thomas could inform me as to how the following is all that different from his own critique:

Compared to those stricken with severe autism, I count myself pretty lucky. Even with my own level of issues I’ve had, I’m disturbed by the recent media portrayals of autism as just another personality type. Yes, there’s always been geeky, socially awkward people, but that’s not the same as neurological dysfunction. I’m all about accepting diversity, but this talk of neurotribes as just normal variation is as crazy as if someone said people with Crohn’s disease were just part of “digestive diversity”.

For the sake of brevity I couldn’t possibly detail every moral crusade being waged in the war against autism. But at least let me finish with today’s modern spawn of B.F. Skinner: the “fanatical” and “cult-like” phenomenon of the Board Certified Behavior Analyst and the fake science they practice. BCBA Dr. Doreen Granpeesheh of the Center for Autism and Related Disorders, and featured in the film Vaxxed: From Cover-Up to Catastrophe, claims to have achieved an “unprecedented” recovery rate, from “high-functioning” to the “most challenging” children.

We at CARD have seen recovery for decades and we make it happen for some of the children that we treat. We are not the only ones. Treatment providers all over the country who have been doing top-quality ABA treatment for children with autism, for a minimum of 30 hours per week, for two or more years, have been recovering children for years. Let me explain exactly what we at CARD mean when we say a child has recovered from autism. We mean that the child no longer displays clinically significant impairments related to autism. In other words, there is nothing left to treat, the child is doing just fine.

Hysterically, CARD goes on to say that “by recovering someone from autism, we are not removing their unique perspectives on life or their unique personality. We are simply teaching skills, we are giving tools, we are opening up options. It is then the child’s choice as to whether or not he wants to take them. We are not trying to make anyone “normal,” we don’t even believe in normal. We believe in learning skills that make you stronger and more independent.”

“We don’t believe in normal” says the industry that thrives on the pseudoscience of normalizing autistic children.

Thomas, call the NDM a “moralising crusade” if you wish, but don’t pretend like there are no sides to be taken. The NDM knows where it stands. I do not fault you for disagreeing with it, or some of its proponents. But do not act like there is some level playing field around which all sides should be judged. The pathology paradigm will always be harmful to autistic people. Yes, even the “severe” ones. The ND paradigm has done no harm to anyone. The alleged “fanaticism” and “cult-like” elements you’ve encountered within the NDM have not stopped parents who will stop at nothing to “treat” their children regardless of the potential damage done.

Yet still the idea that the NDM opposes treatments and medical interventions for children with high support needs is seriously dishonest. I oppose abusive treatments and interventions that fail to respect autistic people as autistic people. I oppose treatments that are actually harmful and deadly to autistic people. You know what isn’t harmful and deadly? Autism. You know what else isn’t harmful or deadly? Accepting your child as autistic. Why would anybody oppose treatment for a co-occurring medical condition presuming it has been tested and found safe? Once more, many autistic people would greatly benefit from treatments for co-occurring conditions, be it GI problems, sleep difficulties, seizures, depression, or anxiety. This would benefit caregivers as well. Being able to communicate, however appropriate to the individual, and learning effective coping mechanisms for mood or anxiety disorders could help alleviate aggressive behavior.

Maybe the most insulting thing Thomas writes is that the NDM asserts that “with the correct accommodations, autistic people will be absolutely fine and problem-free.” I had to read that line more than once to make sure I interpreted it correctly because it is so absurd. Thomas is concerned with ensuring that accommodating, treating, or curing autism remain part of “legitimate debate.” Is Thomas living on the same planet that I am? At what point in the last half-century or more has “treating” or “curing” autism not completely dominated the entire “legitimate” public discussion of autism? The ND paradigm exists because treating and curing autism has until relatively recently been the only “legitimate” framework to understand autism at all.

Accommodations would make life “problem-free?” No, I do not live in a fantasy world. Disability activists going back decades could attest to the fact that no matter how important accommodations are, discrimination and inequality prevails. Accommodations could, however, go a long way in correcting the lack of quality of life that so many autistic people face. Accommodations could help remove some of the biggest roadblocks autistic people face in the workplace or within their communities. Nobody seriously believes that accommodations would make life completely “problem-free.” Remember, our society was built around accommodating the needs of the neuromajority, not autistic people. Neurotypical people don’t have to think about these things because their needs are fully accommodated from birth.

Thomas says that we should “set aside … prejudices and preconceived ideas” in order to reach out to those with whom we “disagree” with. In an article on problems he sees with the NDM, Thomas seriously asks that autistic people do this while he remains apparently oblivious to the fact that there is no level playing field here. Thomas, will you next be tackling the problems with the official “autism community” and why after so many decades of blaming autism for ruining families, being a costly financial burden, and treating autistic people as objects to be experimented on or electro-shocked into submission, they can’t seem to “set aside their prejudices and preconceived ideas and engage into a dialogue” with autistic people?


I Don’t Know My Own Father

I don’t know my own father. I have never actually known him. Growing up, he was just there among us. After high school, I wanted nothing more than to run far away from what we all grew up in, and I did for the most part. I don’t yet know how much I regret that. But nobody really knows what it was like growing up in our house. Nobody understands what we all tried to escape. My entire family has been on and off antidepressants for years with mental illness to one degree or another. I know that when my dad dies, I will do my best to remember the few good memories, almost all of which originated in elementary school and ended by middle school. I will offer a side to his story that his own siblings know little of. It’s not all bad, it’s just very complicated.

But as his health deteriorates, the chances that anything will be resolved between us become remote. In fact, there is no chance at all. I put twelve years of distance between us when I moved to North Carolina in 2005. Several years later early signs of dementia began to creep in. Twelve years later, there is no longer any way to resolve the problems we all faced growing up. Even if he could understand, I’m not yet able to put into words what I need to say to him because I don’t yet know what it is I want to say. I forgave him some time ago for an incident of physical abuse, though after it occurred we never spoke of it again. I know I was not innocent in provoking it either. I blame the overwhelming circumstances we were all living in at the time that contributed to it, like a powder keg, and which ultimately led to permanent estrangement that persists to this day. 

After he is gone I will need to come to terms with the overwhelming guilt and regret that has plagued me for years. I went a long time trying to figure out why things were the way they were. Why could I never develop a relationship with my own father, no matter how hard I tried or wanted it? What went wrong and when? What stood in the way? Was it me or him or both of us? Fortunately I have some answers to those questions now, but they came too late. The damage was long done. I don’t blame him anymore, and I try not to blame myself either. But the problem is that I see him in myself all the time. In everything I do, even down to the identical sounding way I laugh around other people. I see him in my actions and I see him in my failures, as I relive some of the same difficulties he faced. And as much as I wish I could shed his influence, I know I cannot do this. 

Some of the good memories I have are from when I was younger. He taught me things and fostered interests in things that I still have interest in to this day. Because of autism no social/emotional relationship ever really developed between us. I myself am unable to relate to people in this way, so I do not blame him for that at all. But this is a recent realization. For most of our lives, we grew up with no understanding at all of why he was the way he was. We saw a socially and emotionally distant father, sometimes may as well have been absent. There was a wall between us and none of us knew why. And ongoing marital conflict complicated everything further. I had both parents vying for my support, to back their side of the story over the other. Two parents who wished to pit us against the other. I didn’t know which side I was supposed to be on, but I turned on him anyway. That was an impossible situation to be forced into and I don’t know that any other kid would know how to deal with it any better. I’ll never let go of the regret I still live with for that even if I know it wasn’t my fault. 

After I went away to college for the first time, my dad did try to reach out to me via letter. I never responded to him. Of course I saw him in person after that, but I never responded because I didn’t know how to. And I will also never stop regretting that. Time and distance, perhaps a lot of it, were required for me to come to an understanding of what I couldn’t do at the time, because my focus was solely on escaping my childhood, my high school years. It is now too late for us to come to terms with any of it. And I will not try because it is far too difficult even now. I don’t know my dad and I never really will. I have never had a relationship with him and won’t ever now. He regrets this and I know it. He lives with far more regret than even I do. Even given his increasingly limited cognition he recalled an incident from Christmas many years ago involving my brother that I have no recollection of myself, but which he brought up in conversation to express his regret anyway. He very likely lives with much more weighing on his mind than anyone is aware. And because of his inability to communicate normally with any of us, will go to his grave never having resolved any of it. For that I can do nothing but say that I forgive everything and I’m sorry our lives worked out the way they did. 

Living With Depression

Depression is back again with a vengeance. I’ve recently stopped one medication and started another in hopes that something new might work better. But being off the medication I relied on for so many years has brought my worst symptoms back. I feel overwhelmed by everything, even minor things, like I’m walking around with a crushing weight on my shoulders. If only I could describe it in a way that other people who’ve never experienced it could understand. When my worst symptoms return, I feel a frequent need to cry. I have no energy. I see no value in anything, wonder why it is worth living anymore. And these are things that nobody will know I’m dealing with at any given moment because I’m an expert at hiding so as not to burden other people with my presence. Also, I don’t want anybody to know because I do not want to listen to unwanted advice about the need to exercise and attempts to “cheer” me up with positive outlooks that generally have the effect of a small desk fan in a hurricane.

Five years ago I was able to wake up for work and take a five minute shower. Now, I can barely wake up. When I get out of bed, I have that crushing weight on my shoulders. I move very slowly and unsteadily, like I have a chronic hangover. Every movement requires far more effort than it should. What once took me five minutes takes me no less than fifteen and often twenty now because I’m so drained of energy. I don’t want to wake up in the morning. I am the heaviest I’ve ever been in my life because of a toxic work environment over the last four years: because I’m chronically without enough money to eat anything other than fast food or other junk food, and because the easy proximity to cheap, unhealthy food at work has led to tremendous weight gain. I do not get a lunch break, and so eating on the go is often a necessity, or eating lunch early or very late because I had few other choices. I work with people who I’d never associate with if I had any choice. People who harbor a host of toxic ideas that make me want to run away and never go back. (I do not go to work to argue politics with coworkers and will not be told that I should. I go to work because I need money, that’s it.) I could describe so much more about my work environment that is personally toxic but it doesn’t matter. This is the best it is going to get for me right now, and that’s what is so difficult for me to accept because I know I’m capable of so much more.

I daily relive my failures. When my depression symptoms hit hardest, this becomes quite disabling. I relive my failures, thinking endlessly about what I could have done to change the outcomes, about how much I wish I could just remove myself from the personal hell I’m living now and start over. This often leads directly into the chronic feelings of needing to cry. The crushing weight hits me every two weeks when I get my paycheck and watch it disappear as fast as it deposited into my bank account. Whenever I read about other people suffering from depression being told that they must allow time for themselves, to do what they love, I laugh to myself long enough for it to turn to tears. Nothing that I want to do or love has mattered in a really long time. I’ve heard of coworkers taking “mental health” days. I cannot fathom this phenomenon. A “mental health” day because just need a “break.” Do they have paid mental health years to help me get my life in order?

I want another career direction, or just another job with a less toxic work environment. Because I do not really fit-in anywhere, around anyone, most work environments will unfortunately not work well for me. I’m not naive and realize that this is just something I cannot do anything about. I will never fit-in anywhere, something that autistic people live with for the duration of their lives. But I still wish I could go back to school and try again because my areas of expertise lend themselves to work environments far less toxic than what I’m stuck with now. The crushing weight of failure combined with the crushing weight of depression leaves me frequently feeling that killing myself would be the best way to alleviate the overwhelming pain. But I will never do it because I’m committed to my family, the only success I’ve achieved, and perhaps the only one that matters in the long run. I just cannot get past the overwhelming feeling that I could have achieved more. I gave up on my goals because it became obvious to me that it would require incredible sacrifice in my relationship with my partner, and would even likely require us to move elsewhere. She would have to uproot her life for me. Because of depression, I’ve never felt that anything about me was ever worth uprooting one’s life for. I’ve never felt like I “deserve” anything. I’ve always seen myself as a burden to others. I’ve never expected anyone to sacrifice for me and wouldn’t even understand it if somebody did. But this is who I am and has been since my high school years. I’ve always put aside everything I wanted because I felt like I didn’t deserve it regardless. This sounds incredibly irrational to other people, even “crazy.” But I don’t know how to think any other way. When you have zero self-worth, live in constant states of despair, how else can you see yourself? I’m not recovering from depression, I’m still living it. I just want to learn to cope better, to help me put aside feelings that I can do better, because right now I know I can’t.





“Autism diagnoses are handed out like candy on Halloween”

Heard this one before? It’s a variation on the same war cry of baby boomers railing against the over-medicating and over-diagnosing of kids today. Ever talk to a baby boomer? “Back in my day, blah blah blah, blah.” Because I’m autistic with severe attention deficits, I generally only hear “back in my day.” The rest is usually a blur as I immediately turn my attention to more important things, like what I want to eat for lunch.


“Back in my day we didn’t have all of these chronic shenanigans…” says the totally legit Mom’s Across America.

But it would be unfair to suggest that all baby boomers are this naive and shallow. Because, ironically, many of them have these “chronic illnesses,” most undiagnosed. Because the science was still in its infancy in “their day” doesn’t mean researchers and clinicians have invented “illnesses” that didn’t previously exist. This means nothing to those who believe that Big Pharma and Monsanto are colluding to create an army of chronic behaviorally disordered, asthmatic, oppositional defiant, dyslexic, epileptic, hyperactive bots.


Lord Supreme Commander of the lethal fidget spinning army. Fidget spinners all manufactured in a peanut-free facility.

But getting back to the original issue: are autism diagnoses really being given out to just about any nerd with a quirky personality? Ask any “autism mom” of a “low-functioning,” severely disabled child who thinks autism is way over-diagnosed because it doesn’t look like the “tragedy” they ended up with, and you’ll hear that autism diagnoses are somehow being given out based on superficial personality traits.

Ever seen the part of the diagnostic criteria where it says “[s]ymptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning”? 

I’m aware that using myself as an example is anecdotal evidence only, but allow me to provide the two people who will read this blog an example of what “clinically significant impairment in social, occupational, or other important areas of current functioning” means.

I’m an Emergency Medical Technician. I have no set workplace: it varies from one emergency scene to the next, and includes a lot of time spent in the back of a moving box that makes loud noises and has a lot of bright, flashy lights. It is often a highly stressful job. It would be a sensory nightmare for some, but only moderately impacts me. I absolutely abhor being on scene with large crowds and lots of eyes on me which makes my skin crawl if I don’t refocus my energy on the person for whom I’ve been called. My brain cannot adequately process the noise and information overload that I encounter on some scenes, like the double opioid overdose in which I was accompanied in a small room by two unconscious bodies and several EMS and fire department personnel, as well as screaming bystanders held back by police. My anxiety, which I exhibit internally for the most part, increases in any group of people that continues to grow beyond three people.

But here’s a concrete example of what “symptoms cause clinically significant impairment” means in an occupational setting:

This patient (no information will be given due to HIPPA) recently had a tracheotomy. Patient had mucus building that was partially occluding her airway. On our arrival, patient was worsening quickly. After patient was loaded into ambulance for transport, patient’s condition deteriorated as oxygen saturation dropped below 80%. Patient’s tracheostomy tube had to be suctioned with assisted ventilation via stoma, as this patient could not breathe via mouth or nose. With two paramedics in the back of our ambulance trying to prevent respiratory arrest, they were unable to provide a report over the radio to the emergency department and asked me to give it while driving.

I am a single-tasker. It is not that I can’t multitask when necessary, as in this case, but it is much more difficult for me to do. While driving as carefully as possible with two unbuckled people and a patient in the back with lights flashing and sirens blaring, there was a lot requiring my constant attention. Sensory input: sirens, though significantly muted being in the cabin, are still loud enough to be overwhelming after several minutes. Attention to the road–driving with lights and sirens is very dangerous because other drivers on the road are highly unpredictable and often do not know what to do when an emergency vehicle comes up behind them or emerges into an intersection–while also simultaneously processing the noise from the sirens becomes overwhelming after a few minutes. Then I’m asked to give a detailed radio report to the hospital we are delivering the patient to while trying to pay attention to driving safely and processing constant noise from the siren.

This radio report is usually given by the EMT or paramedic in the back currently attending to the patient and involves notifying a nurse at the hospital’s emergency department about the present condition of the patient, why 911 was initially called, what we were presented with on our arrival, all medical interventions done or in progress, and a list of pertinent vital signs or downward trending vital signs. Because I was driving and giving a report simultaneously, I had to dramatically shorten the information relayed to the hospital as coherently as possible, and quickly, which is very hard for me to do owing to the extra time I need to process a lot of information before speaking. Thus, my being autistic places roadblocks in the way of being able to spontaneously relay a set of information that was itself relayed to me by word of mouth from the back of my ambulance instead of being right in front of me, allowing time to process the information and mentally prepare the report in advance of calling the hospital like I normally would were I in the back with a patient. I had to mentally prepare a shortened version of the information that would normally be relayed while also trying to drive with lights flashing and sirens blaring.

I managed to give off an acceptable but very quick and short report (I forgot to include some of the most pertinent information because given the circumstances, my processing abilities failed me as I could not retain all the information I had in my head long enough for it to reach my mouth.) While giving the short and marginally adequate report to the hospital, I began veering out of my lane in the middle of a narrow downtown strip, causing me to stop speaking momentarily and get back in my lane, then continue with the report, though the flow of the information I had mentally prepared in a matter of seconds beforehand was lost, resulting in a disjointed flow of spoken communication because I could not simultaneously focus on safe driving with loud sirens hitting my ears constantly in the background and speak into my radio to relay information that I did not have in front of me.

I stopped a bit too quickly on approaching an intersection, causing the paramedics in the back to yell up at me to see what the problem was. The problem was that my brain experienced sensory and information overload, though I blamed it on a fictitious car that failed to see us approaching the intersection. Because I’ve been doing this for over four years now, I’ve developed coping mechanisms to help me through these situations, which admittedly do not occur that frequently, thankfully, like having to drive and give a radio report at the same time. Autistic people need more time to process information, and that means when I need to communicate with others, I cannot spontaneously engage in multiple tasks requiring my strict attention and still adequately communicate what needs to be spoken. For similar reasons, autistic people rely on scripts developed for various social situations owing to the fact that spontaneous communication is nearly impossible for us. In that particular situation, when my brain becomes overloaded, I will exhibit spontaneous twitch-like shaking of my head. It is something I need to do, and it looks odd, which is why I try my best to hide it. Because a lot of effort is expended trying to look as “normal” as possible.

Do I have a “quirky” personality? I’m not sure. I like space and round objects. That sounds weird I guess. But the fact that I have a minor obsession with the solar system and star categorization is not what will land me an autism diagnosis. Sheldon Cooper from The Big Bang Theory is an autistic stereotype, and he does not help us. When we talk about “invisible disability,” it means you cannot see it just by looking at us. Sheldon’s quirky personality is only one side of the story for some autistic people. You cannot immediately see the other side. No, autism diagnoses are not given out like candy on Halloween. I trust that the clinicians doing the diagnosing understand the diagnostic criteria better than non-autistic parents, leaving the problems with the criteria itself aside for now. When someone is diagnosed, there is likely a lot going on that you cannot and will not ever see with your eyes.

In a study conducted by 50 or 60 something year old local dads with zero scientific training, spanking emerged as the best way to cure behavioral problems. Says one of the researchers, while cracking open a “cold one,” “I hit my kid whenever he got out of line and the disobedience stopped.” The findings are expected to be published in the scientific journal Facebook.