The Anti-Autism Manifesto

I'm not disabled. I just have a personality.

I have always been skeptical of the high-functioning autism label. “Autism” was originally a very severe disability. Then all other psychiatric diagnoses for children with social difficulties were removed, so quite suddenly, also otherwise normal people with some social quirks are said to be autistic. The label “high-functioning” was added, in order to differentiate the merely-a-bit-quirky people from the severely retarded people. 

I always thought it was a bit impolite. Calling a socially quirky but  otherwise functioning person “high-functioning autistic” is like calling a person who is a bit bad at math but otherwise normal “a high-functioning retard”. You don't do that. You say, quite correctly, that the person has dyscalculia, IQ in the lower ranges or whatever. You don't stretch the concept of mental retardation to every person who has anything in common with people with mental retardations. So why is that being done with every person who has anything even remotely in common with a socially retarded person?

For many years, I gruffed like this, while continuing using the autism label. Then something terrible happened, that forced me to think: My teenage daughter went mad.

I don't believe she went mad, really. She always was. It is just that with a child, you don't know. All children are mad in some sense. Growing up means becoming less mad. The only thing that can be said about children, is that they are developing normally or not developing normally. And in many cases when a child is not developing normally, you can hope that they will eventually grow up and grow out of the most debilitating abnormality. 

Until you can't hope anymore. For me, that point arrived when my daughter, let's call her Alma, was about 15 years old. After a normal early childhood, Alma had appeared socially deficient. She had difficulties making friends. She resisted every demand put on her. From her parents, but also from teachers. She systematically acted on impulses - her levels of conscientiousness seemed to approach zero. Although Alma's IQ had been measured as very high, she wouldn't make any effort to learn, unless she got an impulse that she wanted to. From the age of 13, she refused to go to school. She ran away from home whenever she got an adverse feeling, forcing us to call the police to locate her. And, worst of all for us family members, she persistently held the idea that she was worthy of something better than us (except the youngest siblings, whom she adored. They were also worthy of something better.). 

Alma got diagnosed with autism at age nine. When I was told about the diagnosis, I said out loud that the diagnostic criteria for autism weren't fulfilled. Only the part about social difficulties was. The part about stereotypical movements, stilted speech and special interests was not the slightest. Also not the one about the difficulties being obvious early in life: I didn't suspect anything was wrong with Alma until she turned five and her toddlerish tantrums still hadn't disappeared. But what choice did I have? It wasn't like they had a better diagnosis for her. If I wanted a diagnosis, I had to take the one they had. Obviously they handed out such diagnoses liberally, because Alma's older brother also got one, despite also fitting badly, although not equally badly, into it. 

Losing a child

I read books about autism - every book I found. Those books were not about Alma. But I learned one thing from the books: Whatever an autistic child does, it is always because of lack of ability. It might seem that autistic children are hostile and don't care, but really, they are only bad at understanding and communicating.

Until Alma was 15 years old, I hoped at least a little that this was the case and that Alma would get better at communicating and cooperating when she got older. Then, I couldn't hope any more. If Alma's problem was a lack of ability, she would get better with time. Instead, she got worse with time. I had to watch her developing from a difficult child into a mentally ill teenager.

I realized that she lived in a fantasy world. What she did all day was feeding that fantasy world. If I fit into the fantasy world, I was good. If I didn't, I was awful. Her concept of the world was obviously unrealistic: Although she neither went to school with any order, nor worked in any sense, she seemed steadfast in her conviction that she was doing great. If I told her that in fact, there is no future in spending one's entire day in cooking for oneself and then throwing the food away, she looked at me as if I was the one who was mad. I realized that it didn't matter what I said: Alma was convinced she knew things better than me.

This is not autism, I thought. The books about autism said absolutely nothing about distorted concepts of reality. But what was it? Alma's psychologist had no interest in that question. Neither did the three psychologists I know on a personal level. Out of desperation I sent a detailed description of Alma's case to Apple Pie of Things to Read. And he gave me the decisive clue: A personality disorder. 

So I started reading about personality disorders. I didn't have to read for long. There it was, second in the list: Schizoid personality disorder. 

The pieces fell in place. Alma's way of being actually had a name. It had been described many times in psychiatry. It wasn't I who was mistaken when I assumed that Alma actually didn't value social relationships, including to her family members. In the DSM-5, four of the following eight criteria have to be fulfilled for a diagnosis of schizoid personality disorder. Alma fulfilled all eight of them, as far as I could see. She seemed to be Ms Schizoid in person.

• Doesn’t want or enjoy close relationships, including being in a family

• Chooses solitary activities the majority of the time

• Has little to no interest in having sexual experiences with others

• Finds pleasure in few, if any, activities

• Lacks confidants or close friends besides first-degree relatives

• Appears indifferent to the criticism or praise of others

• Displays flattened affect, detachment, or emotional coldness¹

Wikipedia said that schizoids often have very vivid fantasy worlds and take those fantasies more seriously than people normally do. That was Alma in a nutshell: She was practically working full time maintaining and serving her fantasy world, ignoring and fighting the world shared with other people in the process.

I told Alma's psychologist about my findings. She wasn't interested. She said that they don't treat schizoid personality disorder for under 18s anyway, so why bother? Instead, the psychologist helped Alma see that my ideas about Alma's mental state amounted to psychological abuse. She talked to Alma about it and alerted the social services.

This wasn't the first time Alma took an offered opportunity to blame her problems on her parents in front of the social services. In fact, it was the third time she was placed in foster care. The two previous times we negotiated her back quickly, partially because she did badly in foster care. This third time we have made no attempts in that direction. This is partly due to the fact that her current foster home is very nice: a couple in their 50s with grownup children living on a small horse farm (yes, there is something with owning horses and taking foster children). But we have also realized that we can’t raise our other children in the shadow of a mentally ill person. Raising children essentially is about showing them bit by bit what it means to be a mentally healthy, conscientious adult. The intense presence of a teenager who demands to be considered a mentally healthy, conscientious adult but really is not makes that task impossible.

During the first few months, Alma did rather well in her foster home. She was nice and friendly. She took up horse riding. She even socialized with guests at the foster mother's riding school. A few months later, the foster parents too have fallen out of grace. Alma has taken up her habit of running away, demanding another foster home. She behaves about the same as when she lived with us, demanding that the entire house go quiet at 20.00 so that she can go to sleep and rise at 04.00 and make noises herself. Or complaining about the unhygienic standards of the house while her own room is a complete mess. Her behavior is perplexing to most, first being nice and friendly and then hostile and arrogant without anything else obviously changing. My best guess is that Alma only wants to associate with people who make her feel mentally normal. As soon as people around her in any way reveal that they find her mentally ill, she needs to exchange them for new people.  

It must be added that Alma's foster parents are the ideal foster parents. I didn't know such people existed - I thought all people who became foster parents did so for the wrong reason. But apparently not. These people see it as their mission to prepare children for life, which, sadly, seems rather unusual in caretaking professions. During Alma's childhood, I have been feeling lonely in my ambition to help Alma become as much of a mentally healthy adult as possible. I have much more often met with an accepting attitude of “disabilities”, with psychologists and teachers and social workers taking it for granted that if Alma wants to take a trajectory that leads to a life of institutional care, that is a lifestyle as good as any.

While the foster parents are great, psychiatry isn't. It remains to be seen if any attempt of effective psychiatric care can be wrought out from it. And that is a reason why I am telling this story to the public: Basically, I'm out of good ideas. I tried-this and tried-that, until there wasn't anything more to try. Talking about it in public, at least I might get some new ideas from someone who knows something.

I guess everyone wonders how I can still be sane enough to talk about this. Losing a child to mental illness is a prospect that parents fear greatly, and many people imagine that they would go insane themselves if that happened to them. The only thing I can say is that it happened very gradually. I had almost a decade to get used to Alma's mental illness, from the first time I suspected it until it stood clear to me that she wouldn't outgrow it. During that decade, I hoped that this-thing or that-thing would help her grow up into a mentally sane adult. My hopes failed one after one, until none of them were left. That way, my grief was divided into small parcels.  

Learn from history

The tragedy of Alma's mental illness opened my eyes to the ill effects of the autism label. Alma has been denied every kind of relevant psychiatric care during her entire life, because psychiatry doesn't recognize her illness. Instead of recognizing the disorder she actually has, it has pasted it over with an “autism” label.

In theory, there is nothing wrong with merging several psychiatric diagnoses under one umbrella. But then the umbrella diagnosis needs to be expanded to contain all the symptoms of all the abolished diagnosis. That wasn't what happened. Instead, the diagnosis of schizoid personality disorder of childhood was eliminated, in two different steps. First, it was replaced with Asperger syndrome of childhood in 1995. Then Asperger syndrome was replaced by high-functioning autism in 2013 in the diagnostic manual DSM-5.

I think this amounts to sabotage. Half a century of psychological research has in effect been discarded. When I didn't find any information about Alma's condition, I was told that “girls with autism” is a new area of research and little is known yet. That wasn't true. In Loners: The Life Path of Unusual Children (1995), 20th century psychiatrist Sula Wolff described decades of meticulous research on children like Alma. Wolff describes cases from the 20th century that are almost spookily similar to Alma's case. The information needed to understand Alma's condition was there all the time, but I had to become desperate enough to turn every stone to access it. Because the information had changed names and thereby became unsearchable. 

Clarify and obscure

This experience has taught me one thing about psychiatry: It has two roles at the same time. To clarify and to obscure. Psychiatry clarifies the conditions of people who have socially acceptable psychiatric illnesses. And at the same time, it obscures the conditions that are not socially acceptable. 

Calling a child disabled is socially acceptable. It is so socially acceptable that up to ten percent of children in some regions are diagnosed with ADHD and autism. In Stockholm, about 6 percent of children get diagnosed with ADHD and 3 percent with autism.²

The idea that children can have socially aversive personalities is, however, taboo. Also against mounting evidence that a child is socially disinterested rather than socially disabled, it is the job of psychiatry, school and then everyone else, to explain the social disinterest away as a social disability.

This has not only been less than optimal for my mentally ill daughter, but also for my socially particular son. Let's call him Child1. I wrote about one of his achievements in my post Tyranny of the social. Also Child1 was diagnosed with autism in childhood, because his teachers in school specifically asked for that label. Just like Alma, he didn't fit the diagnostic criteria very well: Although he was socially particular, he didn't have the strange special interests or repetitive movements typical for autism.

Throughout his childhood, and especially throughout his teens, Child1 has been treated as more disabled than he is. Or, more correctly, he has been treated as disabled although he isn't. He just has a non-social personality. At 18, he is a math prodigy, dedicating his time to logic and numbers. Like his younger sister, he doesn't like reality in particular. But thankfully, he doesn't dwell in a constructed alternative reality, as Alma does, but in the world of logic, numbers and science. He converses aptly and politely with anyone who wants to visit him there, but has no interest in the social world people build between them for the sake of it. Still, school staff have kept insisting that he needs help with his “difficulties” and point out, quite insensitively in his presence, how much help and support they believe he will need when he moves from high school to university.

I see what you see

This, I believe, is the fundamental difference between autism and schizoid personality disorder: Autism builds on social disability. Schizoid personality disorder builds on social disinterest. From this follows that when schizoid personality disorder was crowded out by autism, loners all over the world were made to believe that they were disabled.

I was one of them. When I grew up, I knew, or was made to know, that I wasn't normal. Then as now, I was quite gregarious, but I also didn't fit in among kids in general. As an adult, when I had children that were diagnosed with autism, I started to assume that my abnormality lay in a weak version of autism. I assumed that normal people's social world is full of clues that I don't get. I thought that my difficulties to fit in were caused by my inability to understand the finer nuances of what other kids were doing. And I thought that in adult life, my interest in theoretical matters was a result of my inability to fully grasp the social world. I even wrote a blog post about it two years ago, theorizing that people with “autistic” traits are more interested in things because we just don't understand people very well.

I lost this belief in two steps. First, when I read How Emotions are Made (2017) by Lisa Feldman Barrett. Prior to reading that book, I thought that my inability to read people's faces was a sign of autism. I could roughly understand facial expressions, but I couldn't read them. I had to rely on other cues as well in order to, for example, understand whether a person was surprised or afraid. Lisa Feldman Barrett taught me that in fact, that is not a disability, because everyone is doing that. I thought my failure to read people's faces was a whiff of autism, but Lisa Feldman Barrett told me that there simply is nothing to read. Everyone is just putting clues together the way I do. Emboldened by Lisa Feldman Barrett's research, I finally took Simon Baron Cohen's Reading the Mind in the Eyes test. While taking the test, I felt that I was just consciously guessing. And still, my result was almost creepingly average. So probably everyone is guessing roughly the way I do. Some do it better, some do it worse, but we are all guessing. 

Shortly thereafter, I discovered the schizoid concept. It says that being more or less social is not just a question of ability, but also of inclination. Schizoid people do not prefer to be on their own because they have such poor social skills. They might or might not lack social skills, but they prefer to be on their own because they like their inner worlds better. 

That is the essence of having a personality: A series of preferences. Why didn't I think of that before? It doesn't have to be that those of us who are a bit less socially inclined are missing out on something because we fail to see it - we might just like our own worlds. 

I'm not averse to changing my mind here. Give me some evidence, even weak evidence, that you see details I don't see, and I'm ready to change my mind again. But as things are, I have never seen any such evidence. I just reflexively assumed it was there. 

On a mission

I think the single most fascinating trait with schizoid personalities is their fundamental self confidence. In the 1990s, the concept of “low self confidence” was all the rage. As soon as any person behaved atypically in any way, there was always someone there explaining their behavior as caused by low self confidence. In that light, a personality disorder characterized by too high self confidence is intriguing. Fundamentally, it is logical. Human traits tend to be normally distributed. If some people have too low self confidence, there should be people with too high self confidence at the other extreme.

High self confidence is my own most obvious schizoid trait. Since my young years, I have been walking around with the sense of being on a mission (or being depressed because I couldn't find my mission). So far, most people have not agreed with me. If I ask the market how I could best spend my time, the market would say that the best part of me is my hands, doing some menial job. The market would much rather see me cleaning people's houses or manning a check-out point than writing texts about difficult subjects. I have doubted my ways many times. But not enough to start doing what most people do: The thing society asks them to do. I'm guided by an inner conviction that what I find meaningful is meaningful. Most people lack such a conviction or have it in a much lighter version.

Anders lives with the same kind of conviction of the relevance of his own thoughts and ideas. And, sadly, one of our children seems to have gotten this unusual self confidence in excess. While Anders and I believe that our utmost intellectual efforts are meaningful, Alma acts as if she believes that every single impulse she gets is meaningful. It seems like she got the elevated self confidence without the necessary grip of reality to stay sane. 

I’m sorry, I was wrong

Looking through my family, I see a pattern: The family members who are not typical are actually not autistic-light. Instead, they have schizoid traits. And it is the same with Anders’ family.

I think this is the case with many families out there. In order to be diagnosed with autism according to the DSM-5, people are supposed to fit into at least two of these following descriptions: 

1. Stereotyped speech, repetitive motor movements, echolalia (repeating words or phrases, sometimes from television shows or from other people), and repetitive use of objects or abnormal phrases.

2. Rigid adherence to routines, ritualized patterns of verbal or nonverbal behaviors, and extreme resistance to change (such as insistence on taking the same route to school, eating the same food because of color or texture, repeating the same questions); the individual may become greatly distressed at small changes in these routines.

3. Highly restricted interests with abnormal intensity or focus, such as a strong attachment to unusual objects or obsessions with certain interests, such as train schedules.

4. Increased or decreased reactivity to sensory input or unusual interest in sensory aspects of the environment, such as not reacting to pain, strong dislike to specific sounds, excessive touching or smelling objects, or fascination with spinning objects.³

Seriously, do three percent of children in Stockholm actually act this weirdly? I don't believe that. I believe that a fraction of a percent really does. Then the rest are probably squeezed into the diagnostic criteria the way my children were: quite normal focusing is called “special interests”, quite normal fussiness with food is interpreted as hyper-reactivity and so on. When a diagnosis becomes trendy, psychologists can squeeze quite a share of the human race into it. 

I don't deny that high-functioning autism really exists. If people say that they are oblivious to social cues and strongly fixated with everything always being the same, then they most probably are. Temple Grandin is both very intelligent and clearly autistic, for example. 

But I do believe that an important share of people today described as autistic would be better described as schizoid. And I believe that my own speculations about autism have been largely wrong. 

For example, in Unfortunately, I am the Unabomber, I suggested that Ted Kaczynski had autistic traits. Apple Pie questioned this assumption, and he was right. Quite obviously, the thing Ted Kaczynski had before he developed paranoid schizophrenia was a schizoid personality. His unusual dedication to mathematics, his pathological shyness and his lack of interest in making friends point in that direction. As does his later schizophrenic illness. 

Which brings us to the question of the name: Why is it called a schizoid personality disorder? Because people with these personality traits are more likely to develop schizophrenia compared to the average person. Sula Wolff found out that only about 2 percent of the children diagnosed with schizoid personality disorder in her study sample developed schizophrenia later. That is still much more than the general population, of which only about 0.5 percent develop schizophrenia. Of people with schizotypal personality disorder, an adjacent personality disorder characterized by magical thinking, a greater share develop schizophrenia. Of people with schizophrenia, a high share tends to have a prior history of schizoid and schizotypal personality disorder. Also relatives of people with schizophrenia tend to have a higher frequency than average of schizoid and schizotypal personality disorders.⁴

The name schizoid is far from ideal. Since the biggest problem with schizoid personality disorder is not the risk of schizophrenia, but the problems that not-very-social people face, it is a bit unlucky that it has schizophrenia in the name. But if I have to choose, I would still rather be likened to a person with mental illness than to a person with severe retardation. So I don't think that replacing schizoid with autistic was a step forward. 

The male extreme

Psychology professor Simon Baron Cohen has pointed out that autism (that is, the modern dustbin category of what was previously autism, Asperger syndrome and schizoid personality disorder) is an extreme version of the male brain⁵. To me, that parallel is a further argument for the revival of the schizoid concept. 

In my post Men consume relationships, women produce them, I pointed out that for some reason, men are less inclined than women to use their IQ points to analyze their romantic relationships. Instead they have a leisurely approach to romance. Women, on the other hand, treat romance as intellectual work. 

I think that in this question, the male brain is much more schizoid than autistic. Men are not intrinsically bad at understanding people. Male psychologists are not known to be worse than female psychologists. It largely is a question of mindset. Men are less interested in the dynamics of their romantic relationship. No less capable of understanding it, when they make a try. It is a question of focus and interest, not of capability.

I think both psychiatry and popular psychology need more of the concept of personality. Everything is not about ability - people have preferences and mindsets too. For that reason, I will stop self-identifying as aspie, halfway autistic or whatever I said before. I won't be upset if you continue calling me an aspie. But I won't call myself that anymore. In honor of the 20th century psychiatrists who made groundbreaking discoveries that were subsequently lost: From now on I'm no longer a little bit on the autism spectrum - I'm a little bit on the schizoid spectrum instead.

1. https://www.mentalhealth.com/library/dsm-5-cluster-a-personality-disorders

2. https://www.regionstockholm.se/nyheter/2024/06/fortsatt-okning-av-barn-och-unga-med-adhd-och-autism-diagnoser/

3. https://www.research.chop.edu/car-autism-roadmap/diagnostic-criteria-for-autism-spectrum-disorder-in-the-dsm-5

4. Sula Wolff, Loners - The Life Paths of Unusual Children, 1995, 49 percent of e-book.

5. Simon Baron-Cohen, The extreme male brain theory of autism, 2002, https://www.sciencedirect.com/science/article/abs/pii/S1364661302019046.