How Not to Think About Autism

Why the collapse of clear thinking about the autism spectrum harms the people who actually live with it

My offspring with faithful companion walking in Epping Forest

(Audio version here)

Leading developmental psychologist, Uta Frith, has recently aired her concerns about the expansion of diagnostic criteria for autism. She feels that it has become so inclusive that it is now including people who do not really merit the diagnosis. This has sparked considerable discussion and debate. Some of this is thoughtful, well-informed, compassionate and valuable. However, a substantial amount of it is confused, conflates different issues and has been politicised. I would like to try to untangle some of it.

The following selected quotes cover the most salient aspects of Frith’s concerns that I’d like to address.

Over the years, the basic definition of autism that I’ve given you - that it’s lifelong and neurodevelopmental, and that there are communication difficulties and restricted behaviour - has remained the same. It is generally accepted. But the interpretation of that definition is a different matter, because we have made it more inclusive.

With the purely categorical approach, you had a very rare number of cases that were quite precisely defined, and then lots of people who just missed that. It was felt this wasn’t quite right, which is how we came to a spectrum-based approach.

But that still wasn’t enough. Because of various cultural factors, the spectrum has gone on being more and more accommodating. And I think now it has come to its collapse.

Asperger syndrome was introduced as an official diagnostic term in the 90s, as a way of including people who would not fit the original autism description. These were people who had fluent language, sometimes a high IQ, and yet still had very typical symptoms of autism.

I think at least we have two big subgroups: the people who are diagnosed in early childhood - usually before age three or age five, depending on things like their intellectual abilities and language - and another group, diagnosed much later.

This population is different. It is made up of a lot of adolescents, and among them, a lot of young women. These are people without intellectual impairment, who are perfectly able to communicate verbally and non-verbally, but who might feel highly anxious in social situations. They are perhaps characterised mainly by a sort of hypersensitivity.

In summary and with my own paraphrasing:

• Autism is a distinct lifelong, neurological disorder which presents consistent and enduring problems for those affected.

• Some people are profoundly disabled by it, are typically non-verbal and require lifelong care.

• Other people have milder manifestations of the same traits but fluent verbal skills and can lead successful lives.

• The concept of a spectrum emerged to cover those who still had clearly autistic traits that impacted their lives and capabilities and required support, but were not so profoundly disabling

• Cultural factors have caused this concept of a spectrum to expand past the point of usefulness to include individuals, often women, who are not significantly impaired by distinctive autistic traits but may feel easily overwhelmed and socially anxious.

I think all of this is quite clearly true and also very important. My professional experience speaking on this issue is not trivial. I worked for seventeen years in social care, including supporting individuals with profound autism in residential care and day centres, as well as those living more independently with varying levels of support.

I also have extensive familiarity with the branch of Critical Social Justice Dis/Ability activism often described as the “neurodivergent” movement. This movement frequently rejects medical models of neurodevelopmental disorder, encourages self-diagnosis and frames neurological variation primarily as a political identity rather than a clinical condition. I have been strongly critical of this approach because it obscures genuine medical realities, minimises the profound needs of those most severely affected and complicates the task of providing appropriate support to those who can live relatively independent lives with reasonable accommodations.

My motivation for addressing this issue, however, is also deeply personal.

I come from a family in which autism appears frequently. This is only one branch of my family, but within it more than half of the members show clear autistic traits, ranging from severe disability to eccentricity.

This includes a great niece who may never speak and will almost certainly require lifelong care; a great aunt who was hospitalised in her time for what doctors then described as “fanaticism” and “mania”; a father widely regarded as a solitary, eccentric genius; and a grandfather who was very functional but possessed an uncanny ability to count cards and assumed everyone else could do the same.

Among my own generation and those below it there are further variations: a daughter with severe face blindness and difficulties with reciprocal communication, a niece widely regarded as rude and astonishingly tactless because of her intensely literal communication style, and a nephew with intensely focused interests that, fortunately, happen to be profitable, along with a tendency to forget that other people exist.

Alongside them are a few older relatives who were historically labelled intellectually disabled due to limited verbal communication, and a scattering of socially awkward but otherwise functional family members with narrow, all-consuming interests.

It is safe to say that I absolutely believe autism exists on a spectrum, and that the gradations along that spectrum matter enormously.

Much of the current confusion arises because several quite different phenomena are now being discussed under the same label. In practice, it may be more helpful to think in terms of at least four broad categories, with some overlap between them.

1. Profound autism

The most severely affected individuals who will never be able to live independently, have little to no meaningful speech and require assistance with their most basic care.

2. Significant autism

People with clear and significant autistic traits who nevertheless have fluent language but struggle to function in many areas of the social world. They may live independently or semi-independently but often require support or accommodation with tasks involving executive function, communication, or social interaction. This group has historically often been described as having Asperger’s Syndrome or “high-functioning” autism.

3. Subclinical autistic traits

People who may become easily overwhelmed or overstimulated, struggle with executive function in some areas or experience anxiety in social situations, but who are nevertheless able to live independently and form relationships. In some cases these difficulties may reflect the presence of mild autistic traits that do not meet diagnostic criteria; in others they may simply reflect ordinary variation in personality and temperament. These difficulties may often be better addressed through ordinary psychological support rather than medical diagnosis.

4. Neurodivergence as identity

Finally, there is a growing cultural phenomenon in which autism or “neurodivergence” is adopted primarily as a social or political identity. Within this framework, neurological variation is often framed not as a clinical matter but as a marginalised identity category, and diagnostic labels may be claimed through self-identification rather than clinical assessment.

Because these categories overlap, and because many people struggle to think comfortably in terms of gradations and nuance, there is a recurring tendency to collapse the entire spectrum into a single stereotype and moralise about it.

For a long time, it was common to treat everyone diagnosed with autism as though they belonged in the most profoundly disabled category. This was one of the reasons my father rejected the concept of autism for himself, and why my mother refused to consider an assessment for me when my primary school recommended one. They understood autism primarily in the light of a deeply stigmatised intellectual disability and reacted with understandable indignation. This historical misconception is rarely considered when people speculate about why autism diagnoses were lower among Boomers and Gen X.

Later, the stereotype shifted in the opposite direction. Individuals who would previously have been described as having Asperger’s Syndrome or “high-functioning autism” were sometimes romanticised as eccentric geniuses whose unusual cognitive style gave them special talents. As Frith notes, some parents even sought such diagnoses for their children as a kind of status marker. This framing is not especially helpful either. Most people in this category are not extraordinary geniuses. Their intelligence is typically quite average, and what they most need is a little additional understanding and accommodation in areas such as communication, executive functioning and social interaction.

At the same time, romanticising autism in this way can be deeply frustrating for families caring for individuals with its most profound manifestations. Supporting a strong adult who cannot communicate needs, maintain personal hygiene or reliably keep themselves safe is an immense responsibility. When public understanding of autism is shaped primarily by the image of the quirky savant — the “Rain Man” stereotype — it becomes much harder for carers to explain the scale of the challenges they face and obtain appropriate support.

More recently, a different distortion has emerged. The excesses of the Critical Social Justice movement in claiming marginalised identity statuses, together with a somewhat related tendency within some therapeutic cultures to pathologise feelings that were once understood as part of the normal range of human experience, have created new sources of confusion. When political activists claim “neurodivergence” primarily as a marginalised identity and frame it in explicitly ideological terms, it can create the impression that individuals who identify as autistic while being fully verbal and functioning in society are pretentious ideologues seeking special status, unnecessary accommodations and opportunities to lecture others. This stereotype is deeply unhelpful. It makes life harder for people who face genuine challenges but are simply trying to navigate them and would appreciate a little patience or charity if they occasionally make a social mistake. It can even reduce sympathy for autism more generally, affecting those with its most profound manifestations.

Those who fall into the third category of individuals with genuine psychological difficulties who may or may not have mild autistic traits are particularly likely to be failed by this confusion. In practice, it can be extremely difficult to determine whether someone’s struggles are primarily neurodevelopmental or primarily psychological. Yet the distinction can make a profound difference to how those struggles are best addressed.

Girls with autistic traits have often historically been diagnosed with conditions such as obsessive-compulsive disorder or borderline personality disorder and treated heavily with medication. In many cases what would have helped more is an understanding of their need for predictability and order, support with developing social communication skills and techniques for managing overwhelm and sensory overstimulation. Conversely, individuals who are struggling primarily with trauma, distressing life events or other forms of mental illness may sometimes be encouraged to understand their difficulties primarily through the lens of autism. Because autism is a lifelong neurodevelopmental condition, this framing can inadvertently discourage them from pursuing forms of treatment that might help them recover.

The way forward is not to abandon diagnosis, but to make it more careful, more rigorous and more individualised. Clinicians need to keep multiple possibilities open, remain attentive to the specific experiences of the individual and be willing to adjust their understanding when new evidence emerges about what actually helps that person live a better life.

Few of us are in a position to influence how the clinical diagnosis of autism develops. We are, however, all likely to encounter people somewhere on that spectrum and to participate in discussions about how they should be understood and treated. We can choose whether to indulge unhelpful narratives about autism: whether to pathologise every social difficulty or personality quirk as a neurodevelopmental disorder, or to assume that anyone who says they are autistic but can speak fluently and go out unsupervised must be an attention-seeking activist. We can choose whether to make life easier or harder for people whose brains are a bit (or a lot) different by the way we speak to and about them.

My primary personal concern right now is for my own offspring, who will soon be twenty-two and whose consent to speak about her difficulties I have. She could easily be taken for one of the verbally fluent, intellectually unimpaired, socially anxious young women Uta Frith describes. But “hypersensitive” is not really the right word for her. If anything, one of the more positive ways autism affects her is that she often does not especially notice or care what other people think. Her social anxiety arises more specifically from two difficulties: prosopagnosia and reciprocal conversation.

Prosopagnosia is an invisible disability that runs in my family. My child cannot reliably recognise individual faces. She can compensate when she knows who is likely to be present and can identify people by height, colouring, clothes or voice, but this falls apart if somebody appears unexpectedly or changes their appearance. That makes social encounters stressful, because if somebody speaks to her, she may have no idea whether they are a stranger or someone she is expected to know.

She also struggles with reciprocal conversation: the ordinary back-and-forth of everyday speech. Asked a question, she is liable either to answer in a word and leave silence hanging, or to launch into a monologue and still fail to return the conversational ball. Yet she can be delightful company especially in groups because she has developed a kind of humorous commentary style. She follows the conversation, interjects witty observations and can be very entertaining. This means people can spend hours with her without realising she has not actually been engaging in conversation in the usual sense at all. The difficulty becomes apparent only when she is expected to perform the social game directly.

She also has what one psychiatrist called anaesthesia. This is not the rare condition affecting nerves that makes one insensitive to pain but a detachment from the sensations of the body so that one can simply not notice that something hurts. As a child, she could have an injury or ear infection and give no sign of it, yet if asked “Doesn’t that hurt?” reply cheerfully, “Yes, it hurts a lot.” She has alexithymia where she struggles to recognise her own emotions and says things like, “I’m crying. I think I must be sad,” and once answered a psychiatrist’s question “What does happiness feel like?” with “It feels like smiling.” Despite being more than averagely intelligent, she also needs simple everyday tasks broken down into steps. If told to vacuum downstairs without first being told to pick things up off the floor, she will simply vacuum around them. When she is able to live independently, which we hope she will be, she will need a checklist for things like shopping, housework and the preparation and eating of meals.

You are probably thinking at this point, that this is somebody who would surely always be recognised as autistic. The answer to that is “No.” She makes direct eye contact, speaks fluently, has a large vocabulary, is funny and kind and appears to most people to be a happy, confident little geek. Because she is socially inclined, she has developed workarounds. What is often called “masking” is not, in her case, a false persona that comes off in private so much as an unusual but genuine style of social learning. At home, for example, she will affectionately narrate my absent-mindedness in the style of a mock news report: “Local woman forgets what she came upstairs for. Previous episodes of scattiness have included putting milk in the washing machine and fabric softener in her tea. Insiders recommend avoiding her cooking. Will she remember what she was meant to do before she goes downstairs again? More on this story later.” This is affectionate engagement! It’s just not reciprocal conversation.

The problem is that the areas in which her difficulties become visible are precisely the important ones. She is excellent with small children: patient, energetic, genuinely interested in them, and much loved by them. Her commentary style works beautifully with little ones. But job interviews require the kind of reciprocal dialogue she finds hardest. It took three years and the help of an autistic employment caseworker for her to get through the interview process and secure a nursery job with people who believed they could accommodate her prosopagnosia and social difficulties. After three days, they let her go, citing problems with executive function. She has not been daunted and is now applying for a voluntary role instead. Once she knows the expectations and routines, she will be excellent.

Cases like my daughter’s are exactly the sort that become difficult to understand when the concept of autism loses its clarity. She is neither profoundly disabled nor a quirky savant, neither someone taking on a political identity to feel special nor a socially anxious young woman who needs therapy. She is a self-assured young person whose neurological differences that are not immediately apparent shape how she experiences the world and how she navigates it. She wants to get out in that world and do worthwhile things and she will do them well but she could very easily be prevented from doing so by people not recognising that her neurodevelopmental difficulties are, in fact, neurodevelopmental.

This is why the collapse of clear thinking about autism is a serious problem that we should not facilitate by thinking in reductionist narratives. When the term is stretched to encompass everything from profound disability to ordinary personality variation to ideological identity, it becomes unhelpful to everyone. Those who require the most intensive care risk losing public sympathy and resources. Those with genuine but less visible difficulties risk being dismissed as attention-seekers. And those whose struggles arise from other psychological causes may be led to interpret their problems through the wrong framework that prevents them from accessing support that will genuinely help.

The solution is not to abandon the concept of autism or to deny that neurological differences exist along a spectrum or to be endlessly expansive and inclusive. It is to think about that spectrum carefully and in well-informed ways. Autism is a real neurodevelopmental condition with many different manifestations. Recognising those differences clearly, without buying into any ideological or political narrative which fails to recognise the majority of people affected by it is the only way to ensure that they receive the understanding and support they actually need.

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