Moheb Costandi is a molecular and developmental neurobiologist, author and freelance science writer. He writes the blog Neurophilosophy, and his latest book is Neuroplasticity (2016). He lives in London.
I couldn’t help feeling a little apprehensive before my meeting with Thomas Clements. The British 30-year-old has what used to be called Asperger’s Syndrome, and describes himself as ‘slightly autistic’. Until our meeting in London, I’d had few close encounters with autistic people, so I wondered how to act, and how he might respond to my actions. Would he make eye contact with me? Should I try to shake his hand?
Despite my apprehension, the meeting went well. Clements gets extremely confused in a group of people, and avoids those kinds of situations, but has no problem with one-on-one interactions. We met in the West End, had chicken katsu curry for lunch, and then walked into nearby Chinatown, his favourite part of town.
It quickly became apparent that Clements is remarkably gifted. Like most people with ‘high-functioning’ autism, he is obsessed with a few subjects, and revels in immersing himself in them. I learnt that he is deeply fascinated by China and Japan, and has lived in both countries, where he worked as an English teacher. (He said he felt more comfortable and ‘accepted’ in both countries than he ever has in the United Kingdom – by virtue of being foreign, which often ‘masked’ the behavioural quirks for which he would normally be admonished.) As we walked through Chinatown, he spoke what sounded like fluent Mandarin and Cantonese, to order first a pair of pig buns from a street vendor, and then two small bottles of Chinese moonshine from a supermarket.
As well as his linguistic abilities, Clements has a comprehensive knowledge of arthouse cinema, and of American, British and Chinese hip hop. His exceptional abilities are undoubtedly linked to being what he calls an ‘Aspie’ – but he doesn’t regard autism as a gift. For Clements, autism makes daily life more difficult. It is something he could do without.
‘I don’t really know what social cues are, and I have no idea what people mean by “body language”,’ he told me. ‘I despise superficial chit-chat, so I’ve offended many people without even realising it. Conversations with me are usually one-sided, because I tend to steer them towards the things I’m interested in, and overload others with information without considering their level of interest, but I’m learning to tone it down.’
As a result of this, building and maintaining relationships is extremely difficult for Clements, and finding a girlfriend is even harder: for autistic men such as him, ‘opportunities for having sex with someone are slim, and the chances of being able to find a long-term sexual partner are even slimmer,’ he said.
Clements lives independently in a shared house near Cambridge, and earns a living as a German-English translator; but life for his younger brother Jack, who lies on the opposite end of the ‘spectrum’, is completely different.
‘Jack doesn’t communicate verbally as we do,’ Clements wrote in his self-published book The Autistic Brothers: Two Unconventional Paths to Adulthood (2018):
[Jack] can utter single words and basic phrases, but his ability to construct spontaneous sentences is limited … [He] will never be able to live the life of an ordinary adult. He will require fulltime care for the rest of his life, which will necessitate someone keeping his bottom clean. We all love him dearly, but at the same time we are forced to swallow the bitter pill that he will never have a career, a house, a car or a family like the rest of us. This is a tough thing to come to terms with.
Autism Spectrum Disorder (ASD) is a condition, or range of conditions, characterised by difficulty with social interactions and communication, restricted interests, repetitive behaviours, and sensory sensitivity, symptoms that ‘hurt the person’s ability to function properly in school, work, and other areas of life’, as the US National Institute of Mental Health puts it. The fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (2013), or DSM-5, lists three severity levels for ASD, based on the extent of social communication impairment and restricted, repetitive patterns of behaviour.
The diagnostic criteria for Level 1 autism include ‘difficulty initiating social interactions’, ‘atypical or unsuccessful responses to social overtures of others’, ‘[odd and typically unsuccessful] attempts to make friends’ and ‘problems of organisation and planning [that] hamper independence’. Level 2 includes ‘marked deficits in verbal and nonverbal social communication skills’, ‘limited initiation of social interactions’, ‘markedly odd nonverbal communication’, as well as ‘inflexibility of behaviour’, ‘difficulty coping with change’ and ‘distress and/or difficulty changing focus or action’. Level 3 includes ‘severe deficits in verbal and nonverbal social communication skills [which] cause severe impairments in functioning’, ‘very limited initiation of social interactions, and minimal response to social overtures from others’, ‘extreme difficulty coping with change’, ‘restricted/repetitive behaviours [that] markedly interfere with functioning in all spheres’, and ‘great distress/difficulty changing focus or action’.
People diagnosed with Level 3 autism tend to have great difficulty interacting with others, and can appear to lack social skills altogether. For example, the DSM-5 describes ‘a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only, and responds to only very direct social approaches’, adding that such individuals require ‘very substantial support’ in their daily lives. By contrast, people with Level 1 autism can function independently with some support. (Level 3 corresponds closely to the 11 cases reported by the Austrian-American psychiatrist Leo Kanner in his classic paper from 1943, while Level 1 corresponds to the mild form of autism described by the Austrian paediatrician Hans Asperger in the 1930s.)
About 40 per cent of children with autism do not talk at all
Estimates of the prevalence of autism vary widely, and appear to have increased dramatically in the past two decades. A press release issued in 2012 by the US Centers for Disease Control and Prevention (CDC) estimated that the prevalence in eight-year-old children in the US was one in 88, representing a 78 per cent increase from the estimate in 2004; the latest CDC estimate stands at about one in 59. The World Health Organization estimates that one in 160 children worldwide has autism, noting that there are ‘many possible explanations’ for the apparent increase in prevalence, ‘including improved awareness, expansion of diagnostic criteria, better diagnostic tools and improved reporting’. It notes, however, that the rate of autism in low- and middle-income countries, especially in Africa and Latin America, is unknown.
Despite lengthy research, I could find no figures regarding how many of those diagnosed with autism fall into each of the three severity levels but, according to the CDC, about 40 per cent of children with autism do not talk at all, and at least a quarter acquire basic language at 12-18 months of age, but then lose it. The results of a longitudinal study in Australia published in 2016 are somewhat consistent with this estimate: overall, it found that 26.3 per cent of the 246 autistic children sampled were using ‘fewer than five spontaneous and functional words’ by the end of the study, and 36.4 per cent exited the study not using ‘two-word phrases’; these figures were slightly higher according to different measures and the parents’ reports, which indicated that nearly 30 per cent were not ‘naming at least three objects’ consistently, and more than 43 per cent not using ‘phrases with a noun and verb’ consistently at the end.
Autism often presents with co-morbidities. More than half of children with ASD also have an intellectual disability (defined as having an IQ below 70), and up to half exhibit symptoms of attention deficit hyperactivity disorder. Autistic children are psychiatrically hospitalised much more frequently than others, with 13 per cent of their hospital visits being due to a psychiatric problem, compared with 2 per cent for children without ASD. In autistic adults, the lifetime prevalence of anxiety and depression is 42 per cent and 37 per cent respectively. Autism also commonly co-occurs with epilepsy, with the highest rate in those whose IQ is below 40.
Autism is arguably one of the most controversial subjects of our time. Due partly to a lack of understanding of its causes, current discourse on this subject is a narrative jungle strewn with young, overgrown and ill-conceived ideas jostling for a spot in the sun, including uncompassionate ‘refrigerator mothers’, microbial infections, vaccinations, and environmental pollutants and toxicants, to name but a few.
Into this maelstrom came the neurodiversity movement, whose advocates celebrate autism as a gift that is an integral part of identity. They promise to make the voices of autistics heard, and to improve their quality of life by making the world more accepting of, and accommodating for, them, after decades of being marginalised and victimised. However, in recent years, there has been a backlash against this – growing numbers of people are now speaking out against the neurodiversity movement, claiming that it does not represent them and, more importantly, that it ignores the plight of those with severe autism.
The term ‘neurodiversity’ was coined in the late 1990s by the sociologist Judy Singer, who argued that autistic people had been oppressed in much the same way as women and gay people, and suggested that their brains are merely wired differently from those of ‘neurotypical’, or nonautistic, people. The movement is an extension of the civil rights movement and the deaf pride movement that emerged after the introduction of cochlear implants. Writing in The Atlantic magazine in 1998, the investigative journalist Harvey Blume said: ‘Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general.’
In the past decade, neurodiversity’s popularity has grown enormously, largely because of the buzz surrounding Steve Silberman’s book NeuroTribes (2015). Today, the internet and mass media are replete with articles proclaiming the benefits of employing people with autism, who have a hidden potential that can benefit endeavours such as branding and design – if only we can stop thinking of them as being disabled. This way of thinking has now entered the mainstream: in the US, for example, representatives of the Autistic Self Advocacy Network have advised federal government policymakers on how they believe issues such as healthcare and community integration will affect autistic people; and in the UK, the Labour Party in 2018 launched an Autism Neurodiversity Manifesto, with the social model of disability as one of its key principles.
On the face of it, this sounds admirable – the neurodiversity movement has indeed empowered many with autism, most recently, the young climate campaigner Greta Thunberg who described it as her ‘superpower’. But the movement is proving to be harmful in a number of ways.
Firstly, neurodiversity advocates can romanticise autism. While many with mild forms of autism might lead relatively ‘normal’ daily lives with little or no assistance, many who are more severely affected cannot function properly without round-the-clock care. Yet John Marble, the self-advocate and founder of Pivot Diversity – an organisation in San Francisco that aims to ‘pivot autism towards solutions which empower autistic people, their families and employers’ – posted on Twitter in 2017: ‘THERE IS NO SUCH THING AS SEVERE AUTISM, just as there is no such thing as “severe homosexuality” or “severe blackness”.’
Worryingly, this trend of romanticising autism has extended to other conditions that can be severe, debilitating, and life-threatening. There are now groups of self-advocates who celebrate depression and schizophrenia. This could also be related to the growth of pro-anorexia websites, as well as the more recent emergence of ‘addiction pride’.
The idea that autism is ‘a variation of normal’ is at odds with scientific understanding of the condition. The general consensus among neuroscientists is that autism has neurodevelopmental origins, with recent research showing that it is associated with abnormalities in brain cell numbers and white-matter structure, and defects in synaptic pruning, the process by which unwanted synaptic connections are eliminated. The research also shows that genetics plays a major role: each autistic individual carries a large number of very rare or unique gene variants, together with extra copies of genes, deleted genes and other chromosomal disruptions. Some of these are inherited, while others are generated anew at fertilisation and during the earliest stages of development. Thus, it seems that every person with autism harbours a unique combination of such genetic variations, which manifest as a unique set of behavioural symptoms.
Neurodiversity advocates label those who express a desire for treatment or cure as Nazis and eugenicists
However, neurodiversity advocates reject the medical model of autism, in favour of an as-yet undetermined social model that blames the problems faced by autistic people on systematic ‘ableist’ discrimination. Some of their reasons for doing so are valid. Historically, autistic people have existed on the margins of society, and have been victimised by the medical-industrial complex that aimed to coercively eliminate them and others considered to be disabled. For example, Asperger was complicit in the Nazi regime’s euthanasia programme for disabled children.
Since then, the medical view of autism has changed dramatically. Researchers and clinicians do not want to eradicate autism – they aim to understand it in order to develop treatments for those who want them.
Despite many important medical advances, there is still a lack of understanding of the causes of autism, which leaves many parents desperate, and makes them willing to try just about anything to help their children. Consequently, there is a huge market for ineffective or untested treatments and quack remedies – from craniosacral therapy and neurolinguistic programming to therapies that claim to enhance ‘upper chest “emotional breathing” to help us to learn through emotional charge on experience’ and wearable devices that use so-called Bilateral Alternating Stimulation-Tactile technology to transfer ‘alternating vibrations to alter the body’s fight, flight or freeze response to stress and anxiety’, which apparently restores ‘homeostatic nervous system functioning, allowing you to think clearly and experience calm’.
Neurodiversity advocates still label those who express a desire for treatment or cure as Nazis and eugenicists. ‘When we fight for autism rights, we are fighting for our continued existence,’ wrote the self-advocate Jackson Connors in the People’s World newspaper this June. ‘Against our dehumanisation. Against a “cure”, which is a dogwhistle for ableist eugenics. And against the systems that push so many of us to poverty and suicide.’
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. This extends to autism researchers in academia and the pharmaceutical industry, and also to the parents of severely autistic children. One widely used treatment is Applied Behavioural Analysis (ABA), which involves intensive one-on-one therapy sessions aimed to develop social skills. However, neurodiversity advocates consider ABA to be cruel and unethical, and campaign for withdrawal of government funding for the treatment.
Furthermore, they are trying to legitimise self-diagnosis of autism. ‘Neurotypicals continue to dominate the conversation and speak over autistic voices, which ultimately reinforces a pathologising viewpoint about us, and centres around the idea that somehow we fundamentally cannot speak for ourselves,’ wrote Solveig Standal on the Thinking Person’s Guide to Autism blog this April. Standal continues:
Yes, ultimately some of us will come to realise that they are not really autistic, but the exploration still helps them find answers about themselves, and no one is harmed in the process. However, when we deny someone’s autistic identity, we shut them out of the whole process, deny them access to the tools they need to better access the healthcare system, and potentially deny them their formal diagnosis altogether.
While many among the autism researchers are aware of these problems and find the situation extremely frustrating, very few are willing to speak up, for fear of jeopardising their research funding, offending a highly sensitive patient and parent population, or being targeted for harassment themselves. In recent years, however, growing numbers of parents and carers have begun speaking up against the neurodiversity movement, saying that the way its advocates portray autism does not resonate with their own experiences of the condition.
One of them is Bruce Hall, the 65-year-old father of twins Jack and James, 18, in California. ‘The boys both have severe autism and intellectual disabilities, and their behaviour has always been very challenging,’ Hall told me. ‘Up to the age of nine, James would throw tantrums and scream for hours. He can speak a little now, although you wouldn’t understand much of it. Jack doesn’t speak at all.’
Hall and his wife Valerie published a book called Immersed: Our Experience with Autism (2016), describing in detail daily life with their children:
In public, the boys may throw a fit at any moment – we can’t predict it, and we can’t be certain of the cause. It could be because of the lights, or the sounds, or the number of people around. It could be because they don’t feel well or because they’re just tired. It could be a combination of these things, or none of them.
Even typical kid-friendly entertainments do not ensure that the boys will react positively. Their understanding of situations is limited, as is their tolerance … what normal kids consider fun, autistic kids may consider baffling and terrifying.
The disconnect between the neurodiversity narrative and the experiences of severely affected autistics led another group of advocates to establish the National Council on Severe Autism, based in San Jose in California and launched earlier this year.
‘I have two kids with nonverbal autism,’ said Jill Escher, founding president of the organisation. ‘It’s an extremely severe neurodevelopmental disability – they can’t talk, can’t read or write, can’t add one plus one, and lack any capacity for abstract thought. [Neurodiversity advocates] trivialise this, and cherrypick naive, feel-good stories that portray autism falsely instead of grappling with the reality.’
‘Some aspects of [the neurodiversity movement] are very convenient for all autism advocates, because we all want to portray our children in a way that will engender acceptance,’ she added. ‘If my kid’s having a meltdown at the supermarket, or taking his clothes off, or screaming, I want people to appreciate that his behaviour comes out of a difference in his brain wiring. But do I think his behaviour and wiring is natural? Absolutely not.’
A group of marginalised people are hyper-marginalising the very people they claim to be advocating for
The neurodiversity movement is dividing both the autism community and autism researchers. Advocates make the distinction between autistics and ‘neurotypicals’, or nonautistics. This fosters an ‘us versus them’ mentality, wherein nonautistic people are regarded as an oppressive enemy. It also fosters intolerance towards different ways of thinking about autism, as well as a deep and unhealthy mistrust of the scientific and medical communities.
Ironically, a social-justice movement that aims to highlight the ways in which autistic people have been mistreated by society is now directly responsible for the mistreatment of the most vulnerable of all autistics – many of whom are too severely affected by their condition to speak up for themselves. In standing up for their rights, a group of marginalised people are effectively hyper-marginalising the very people they claim to be advocating for. They have monopolised the public discourse on autism, and continue to do whatever they can to silence any dissenting voices; this inability to debate and try to reach compromise is a problem not only for the autistic community, but for wider society.
It also poses a major problem for autism research. Scientists are now beginning to realise that there is selection bias against autistics with intellectual disabilities throughout all fields of autism research; although nearly half of the autistic population also has an intellectual disability, the majority of research has focused on those with relatively intact language and cognition. Thus, individuals considered to be ‘low-functioning’ are being overlooked by the research community.
‘The movement is harmful because they’re trying to terrorise people into silence, and we’re just a few of the many victims of their bullying and smear campaigns,’ Escher said. ‘There’s a toll on scientific research, too, because the neurodiversity platform apparently doesn’t believe it’s important to investigate the causes of autism.’
It is, therefore, time to start thinking differently about neurodiversity, and to recognise the importance of free speech in the public discourse on autism, because if neurodiversity means anything, it means accepting that we all think differently, and that not everyone takes pride in being autistic.
‘If you’re happy being autistic and think of it as part of your identify, that’s great, and I don’t want to upset you or hurt you, but don’t tell me I can’t try to help ease my sons’ suffering,’ said Hall. ‘For them, autism is a life-altering, cruel disability, and I’d do anything to help them feel good and give them a better quality of life.’
‘Neurodiversity advocates ignore the harsh realities of severe autism, and want to forget about my sons and others like them,’ he added. ‘They’ve done a good job of hijacking the message and monopolising the discourse on autism, and are controlling the narrative so tightly that people like my sons will have no choice in the world.’ Thomas Clements echoes this sentiment – as he wrote in The Guardian last month, the trivialisation of autism by neurodiversity advocates comes at the expense of those at the lower end of ‘the spectrum’, like his brother Jack.