Why is everyone suddenly neurodivergent? (Patreon)

[This is a transcript with references.]

In 2003, Simon Baron-Cohen, a clinical psychologist at the University of Cambridge, claimed that Albert Einstein had autism. Elon Musk has said he has Asperger’s syndrome. And if you ask Google, you’ll find many lists of famous people who supposedly have autism, usually with the pre-amble “Though he was never diagnosed…” It’s been attributed to Mark Zuckerberg, Steve Jobs, Bill Gates, and Eminem, none of whom ever said anything to deny or confirm it.

What’s going on? Why does everyone suddenly have autism? How is it different to Asperger’s syndrome, what does “neurodivergent” mean, and what is “internalized ableism”? Am I autistic? That’s what we’ll talk about today.

First things first, what is autism? The term “autism” was introduced in 1911 by the Swiss psychiatrist Eugen Bleuler. He used it to describe what he believed to be a childhood version of schizophrenia.  The term “autism” alludes to the Greek word “autos” which means “self”, a word that Bleuler used because the children seemed to be detached from reality and withdrawn into their inner world, even though they didn’t have smartphones back then.

Autism was later recognized as a condition independent from schizophrenia. Today, the diagnosis of autism includes learning difficulties, especially with language and speech, trouble with verbal and nonverbal communication, avoiding eye-contact, repetitive movements, specialized and often obsessive interests or behaviours, difficulties with emotional control, and extreme reactions to stimuli such as light, touch, or noise. Autistic people also sometimes have unusual abilities, such as a remarkable memory for facts, numbers, or visual details, or doing mental arithmetic.

This combination of cognitive problems and abilities is the reason why some autistic people were once regarded “idiot savants”. However, the word “idiot” has drifted in meaning since then and is now considered an insult, so the condition has been renamed to “savant syndrome”.

Most people had probably never heard of autism until Dustin Hoffman introduced it to the world in 1988 with the movie “Rain Man”. The movie was inspired by Kim Peek, one of the most famous savants ever. But. Plot twist, while Peek had originally been diagnosed with autism, in 2008 a group of doctors studied MRI images of his brain and concluded that he wasn’t autistic but most likely had FG syndrome, a genetic condition linked to abnormalities of the X chromosome.

In 1943, the Austrian paediatrician Hans Asperger described a group of children who had difficulties with social interaction and communication, like autistic people, but who did not have the same troubles with language and cognitive function. This “high functioning autism” became later called “Asperger’s syndrome.”

Fast forward 70 years and psychologists decided that there is no clear distinction between Asperger’s syndrome and autism and the term “high functioning autism” is neither useful nor descriptive. Instead, there is an entire spectrum of symptoms with expressions that greatly vary. This is why the term Asperger’s syndrome is no longer in use today. It’s now called “Autism Spectrum Disorder,” ASD for short. ASD subsumes both Asperger’s syndrome, autism, and some other developmental disorders. Why Elon Musk referred to a retired expression like Asperger’s is anyone’s guess, maybe he spends too much time with this old-people app called twitter.

Besides the previously mentioned difficulties with language, social interactions, emotional control, and repetitive behaviour, studies have found that ASD is correlated with anxiety, sleep problems, seizures, and an elevated risk of gastrointestinal problems. Symptoms of ASD are usually diagnosed in early childhood and persist throughout life, though they can improve or get worse.

The spectrum of the disorder does not refer to the strength of the symptoms, but rather their variety. How strong the symptoms are is measured separately by three different levels which indicate how much support the person needs. 1 is the lowest level, 3 the highest.

Of course, no one likes to use a clunky term like “Autism Spectrum Disorder”, which is why most people still refer to it as just autism. To avoid confusion, what was previously called “autism” is now often called “classical autism”. The other expression that has taken hold for “having Autism Spectrum Disorder” is “being on the spectrum” though I now think they should have called it quantum autism.

Several studies have shown that the brains of children with ASD develop differently than those of most children, and that this difference is often visible in brain scans before the onset of symptoms. For example, a 2017 paper in Nature found that in ASD children some parts of the brain grow noticeably faster than average, and that this growth is linked to the severity of social difficulties.

Other studies have shown that compared to the average person, people with ASD have significantly fewer connections between parts of the brain that are used for social interactions, and instead more local connections in regions associated with sensory control. These properties can be inferred from brain scans before the age of 2.

How common is Autism Spectrum Disorder? The worldwide prevalence of ASD is about 1 percent, but in high-income countries some estimates say the rate is higher. For example, a 2018 review by researchers from the UK found that ASD prevalence in England and North America is between 2 point 4 and almost 10 percent, depending on region.

According to the American Centre for Disease Control, about 1 in 36 children in the United States were diagnosed with ASD in 2020. Probably quite a few of you who are watching this video are autistic. I’m afraid I have nothing whatsoever new to tell you.

The number for ASD diagnoses has increased substantially over the past two decades. In 2000, it was only one in 150 children who were diagnosed in the US. This means the number has increased by almost a factor 5 in 20 years. The increase in the UK has been even faster, almost a factor 8 in the same period.The major reason for this is higher awareness and better screening.

At the same time, the fraction of those severely affected by ASD is dropping. In the 1980s, more than 2 thirds of people diagnosed with autism also had an intellectual disability. By 2018, the fraction of ASD children in the US classified with an intellectual disability, that’s an IQ below 70, was 31 percent. This decrease of the fraction of those with severe disabilities is also likely due to the enhanced awareness and screening, which picks up on the less obvious cases.

At the moment, there are about four times more men than women diagnosed with ASD. The reasons for this are not well understood. Several studies have shown that young girls are less likely to be diagnosed with ASD because they are better at hiding symptoms, a strategy that’s referred to as “masking”.

Masking includes copying facial expressions and social behaviour or memorizing a repertoire of answers to questions that’ll be accepted as normal enough. While masking might help girls with social integration, it can cause other mental health problems such as depression, anxiety, and low self-esteem. In later life, ASD in girls might get covered up by conditions such as eating disorders or OCD.

Girls might also be more successful at masking because their social environment makes it easier. For example, a 2017 paperby American researchers observed 96 elementary school children, half of which with ASD. They found that ASD girls weaved in and out of social activities in loose groups, making it hard for anyone to tell whether they integrated well. Boys on the other hand tended to play organized games and the ASD boys just played alone, so they stood out much more obviously.

How much of the sex difference in ASD diagnosis is due to masking is presently unclear. What is clear however is that diagnosing girls requires other methods than those used for boys.

ASD is normally diagnosed in childhood below the age of five, especially now that doctors look for symptoms during regular childhood screening. However, this is a fairly recent development. The increasing awareness of the condition has also resulted in larger numbers of people being diagnosed later in life because they fell through the cracks as children.

Still, it can take a long time, sometimes years, to get a diagnosis. It’s a problem because the lack of diagnosis can make it more difficult to cope. A study done in the UK estimated that 10 percent of suicide victims had signs of undiagnosed autism.

What causes it? Classical autism was originally believed to be a psychological condition that results from poor parenting. This idea was pushed in particular by the psychiatrist Leo Kanner. He argued that the leading cause of autism was the “refrigerator mother” who didn’t love her child as she should have.

We now know that ASD is not the fault of maternal temperatures, but an unusual variation of neurodevelopment with a strong hereditary component. That is, children of people with ASD are considerably more likely to also have it. Different studies have put the probability at about 40-80 percent. Part of the difficulty of pinning the number down is that ASD has so many different facets, there are loads of genes involved, and quite possibly some aspects of it are more, others less hereditary.

Some environmental factors also seem to play a role, for example some studies have found a link between obesity or diabetes of the mother and ASD of the child. Though the increase in the odds-ratio is not large and, as it’s often the case with such studies, it’s difficult to infer a causation from a correlation because there could be underlying causes linking both.

A 2016 meta-analysis by a group of Chinese researchers looked at the link between the age of the parents and the chance of the child to have ASD. They took into account 27 studies with a total of almost 67 thousand cases and found a clear correlation, especially with the age of the father. Per every increase of 10 years in maternal and paternal age they found an associated 18 percent and 21 percent higher risk of ASD, respectively.

We’ve also learned about a few things that do not cause it – other than cold moms –  for example vaccines. In 1998, an anti-vaccine activist managed to publish a fraudulent paper in the Lancet claiming that measles vaccines cause autism. He was struck off the medical register and the paper was retracted.

If you’re watching this channel, you probably don’t need to be told but vaccines don’t cause autism. They don’t cause autism spectrum disorder either. To name just one example, a 2014 meta analysis summarized 10 different studies and found no evidence of a relation between vaccination and ASD.  

Other things that don’t cause ASD are caesarean sections, in vitro fertilisation, plastic wrappers, bacterial infections, and watching YouTube.

ASD is a lifelong condition, there is no cure and there is no medication. However, early diagnosis and intervention with suitably targeted programs can greatly improve life satisfaction, and medication as well as psychotherapy can be used to deal with some of the symptoms.

Currently the treatment focus is on psychological and social support for ASD children and their families. Some young autistic people don’t speak at all and can benefit from using picture cards or speech generating devices. Targeted programs that are started as early as possible can improve attention, language development, social engagement, and can reduce the severity of symptoms later in life. The most successful of those programs are those which include parents and schools, because much of it comes down to other people understanding triggers and trying to avoid them.

For example, children with ASD might be bad at rapidly switching between tasks or be unable to read nonverbal clues, both of which can be avoided to a large degree. They also often use repetitive motion, such as rocking or hand flapping to calm themselves down, a behaviour referred to as “stimming”. Asking them to stop is exactly the wrong thing to do. Those are some examples where awareness among other people can really make a big difference.

There are also some medications to treat co-occurring symptoms like irritability, agitation, anxiety, or depression, and some might benefit from Cognitive-Behavioural Therapy.However, there is no one-size-fits-all approach because the symptoms of ASD are so varied.

According to the Diagnostic and Statistical Manual of Mental Disorders, Autism Spectrum Disorder is a mental health disorder. However, a lot of people with ASD and other conditions that have traditionally been labelled “disorders” feel that description is inappropriate. Just because they’re not typical doesn’t mean there’s something wrong with them.

The term that many of them prefer is that they are “neurodiverse” as opposed to “neurotypical”. The term “neurodiverse” refers to a group, whereas an individual would be described as “neurodivergent”. Neurodiversity includes not just ASD but also Attention Deficit Hyperactivity Disorder, Dyslexia, and a few other conditions.

The term ‘neurodiversity’ was coined in the late 1990s by the Australian sociologist Judy Singer, loosely based on the expression “biodiversity”. She saw it as an extension of social justice movements that had given women and homosexuals rights they should have had all along. Singer argued that neurodivergent people had not been given their rightful place in society either, and it was about time to stop pathologizing them.

The neurodiversity movement weaved together with the American social justice movement and developed an extremist part. By 2013, some neurodiversity advocates wrote that autism and ADHD “are the result of normal, natural variation in the human genome”. By 2019, some said that the real problem is the “dominant ableist culture” of society that sets standards for what it means to be “normal”.

An ableist is someone who believes that typical abilities are superior. If you are neurodivergent but have internalized ableism, you may mistakenly blame yourself for the challenges you face, when in fact the problem lies with the societal barriers and discrimination that make it harder for neurodivergent people to thrive.

Some of them have put the idea of treating autism on the same level as the idea of treating homosexuality. For example, Autism Speaks is a charitable organization with the stated goal of “creating an inclusive world for all individuals with autism throughout their lifespan”. They partnered with Google on a project called “MSSNG” to develop a database to identify genetic variants of autism. On their website they described the project’s mission as “to identify many subtypes of autism with the goal of developing more personalized and effective treatments”.

Two years ago, the project was decried by some people on twitter as eugenics, the Nazi doctrine of cleaning society from genetically inferior groups which back then included disabled and autistic people. It seems to me that these tweets attacking the MSSNG project were severely misrepresenting what the project website stated. Nevertheless, “Autism Speaks” which, I remind you, is a charitable organization that supports autistic people, has been labelled a hate group by some activists.This extreme position seems to be held by a small group that is vocal on twitter and I don’t think it’s representative for the neurodiversity community as a whole, but its clearly a sentiment that exists.

Fast forward to 2023 and TikTok is full of teenagers celebrating their neurodiversity, some of them self-diagnosed. Now you might say there’s nothing wrong with teenagers wanting to feel good about themselves, and I fully agree.

The neurodiversity movement has a point. Our world is built for typical people and typical people are often not mindful of those who are less typical. In most cases, I think, not so much because typical people are actively mean, but passively careless. If you’re too tall or too short, too loud or too quiet, or too anything really, you’ll have trouble fitting in.

Some people’s brains don’t work like yours, but that doesn’t mean they are the problem. The problem might be that you’re not making the necessary effort trying to understand them. Paying attention to those outside a standard deviation of the average makes their lives easier and enriches our society.

That sounds all well and good. Problem is that most neurodivergent people you see on TikTok are those well enough to produce TikToks. And in contrast to being queer or female, ASD can in severe cases significantly impair a person’s ability to live independently.

This is why the neurodiversity movement has seen somewhat of a backlash in recent years, primarily from caregivers of people with level 3 ASD, who feel like talking about “internalized ableism” doesn’t help.

For example, the London-based neurobiologist Moheb Costandi has written an article for Aeon, titled “Against Neurodiversity”, in which he draws attention to a worrying “trend of romanticising autism that has extended to other conditions that can be severe, debilitating, and life-threatening”, such as depression and schizophrenia. He writes that “The idea that autism is ‘a variation of normal’ is at odds with scientific understanding of the condition.” And that “In their zealous pursuit of autistic rights, some advocates have become authoritarian and militant, harassing and bullying anyone who dares to portray autism negatively, or expresses a desire for a treatment or cure.”

Tom Clements, who is autistic himself, wrote in an opinion piece in the Guardian that “Many now self-identify as autistic as though autism were a fashion label rather than a debilitating disorder.” And that “Such an attitude has led to the marginalisation of autistic people who, by virtue of their disability, are unable to speak and rely on others to do so on their behalf.”

Some neurodivergent people have pushed back, pointing out that Clements used the term “high-functioning” to refer to himself, and that such functioning labels should not be used because they suggest some people with ASD do not need help. Others complained that Clements is “a very active troll who spends a lot of time misrepresenting the neurodiversity movement” and that he “accuses autistic people of not actually being autistic”.

I didn’t know anything about this when I started making this video, I was just trying to understand the symptoms of autism and had no idea the topic has become so controversial. But I hope that this rundown helps you make a little sense of what’s going on.

In summary, Autism Spectrum Disorder is a mental health condition that subsumes what was previously called autism and Asperger’s syndrome. It’s more common than you might think, affecting more than one in a hundred people. Most of them are able to live a fairly normal life but face challenges, especially at work and in social interactions. Many of them prefer to refer to themselves as “neurodivergent” and try to raise awareness for the challenges they are facing. But the neurodiversity movement has been criticised for trivialising the problems of those most severely affected.

I’ve been accused several times of being autistic or having Asperger’s syndrome. It normally comes after a long list of complaints about how I’m rude and arrogant, talk like a robot, am about as empathetic as a brick and similarly spontaneous but considerably less social. Luckily, there’s an online self-test you can do for this, so let’s see how neurodivergent I am. Here we go. “Your autism spectrum symptoms are high”.

I think that’s wrong, I’m really just rude. Or German. But then I repeat myself. What do you think about neurodiversity? Are you autistic yourself or have autistic children? Let us know in the comments.