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The Guardian
4 days ago
- Health
- The Guardian
Is the huge rise in autism diagnoses really good news? We're not so sure
Prof Gina Rippon dismisses too easily the genuine concerns about overdiagnosis of conditions such as autism and the medicalisation of normal behaviour (Why the antagonism over the rise in autism diagnoses? It's actually good news, 21 July). She correctly observes that there has been an astonishingly large increase in diagnosis rates since 1998. She also notes correctly that, before the 1980s, autism was diagnosed infrequently because of its 'overly narrow' definition. However, in arguing that many children consequently missed out on the help they needed, she draws the wrong conclusion. She fails to mention that other diagnoses were available for such children, including social anxiety, attention deficit hyperactivity disorder and learning disability, among others. Children needing help were frequently diagnosed with one of these, and with sufficient reliability to enable help to be offered within available resources. Moreover, it is well known that the diagnosis of autism by itself does not indicate any specific kind of intervention. Rippon also welcomes the soaring rates of diagnosis, assuming it somehow explains the behaviour of those given it. However, autism is just a descriptive diagnosis. The diagnostic criteria comprise a large cluster of behaviours, such that two people with the diagnosis may display no behaviours in common. The common underlying psychological or neurological abnormality, if one exists at all, is simply not known. I recall during my clinical career in child and adolescent mental health services (Camhs) being asked by parents of a boy with an autism diagnosis: 'We know he has autism, but why does he behave the way he does?' The only available explanation would be an individual assessment of the child concerned and the settings that trigger any behavioural difficulties. Rippon ends by claiming the high rates of autism diagnoses are simply a reflection of human diversity. However, in doing so, she inadvertently reflects what those concerned about overdiagnosis are actually saying. It's precisely because we welcome human diversity that we wonder why such high levels of diagnosis are necessary to understand Richard HassallKnaresborough, North Yorkshire As there are so many references to a 'bad old past' in Gina Rippon's article, I thought it might be helpful if I commented on some of the misapprehensions she expresses. I worked as an academic child psychiatrist from the 1960s to the 1990s, including as a psychiatrist to a school for autistic children. First, the rise in diagnoses has been even greater than Rippon suggests. In the first edition of my textbook, published in 1986, I give the prevalence as three to four per 10,000 children. It is now at least 100, a 30-fold rise. Second, the rise is either entirely or almost entirely due to a redefinition of the condition. So-called Asperger syndrome has been abolished as a diagnosis and merged into 'autistic spectrum disorder'. Third, I do not recognise the supposed difficulty in diagnosing girls with this condition. Certainly, I had no hesitation in doing so when it was indicated. Whether the redefinition of autism is good news or bad news, I, like many others, would find it difficult to say. Alongside the change in definition has come a welcome reduction in stigmatisation and greater willingness to attend relevant services. On the other hand, child mental health services are overwhelmed and many parents are frustrated by their incapacity to obtain what they, quite unrealistically, see as life-changing help. Rather than seeking a definitive diagnosis, many would be better served by encouragement to see their problematic children as 'different' and needing an upbringing tailored to their particular strengths and GrahamEmeritus professor of child psychiatry, University College London Gina Rippon presents the astonishing rise in autism diagnoses as evidence that more members of marginalised groups are benefiting from being diagnosed. It is true that growing numbers of people are suffering mental distress, and the evidence links this with increased poverty and inequality. It is also true that access to services and welfare typically still requires a psychiatric diagnosis. But it is entirely unjustified to describe autism as an incurable, neurodevelopmental brain disorder, except in the case of a small number of individuals who will require lifelong support and may never live independently. The extension of autism diagnoses to potentially include billionaires like Elon Musk, along with celebrities and others with successful careers, is unsupported by evidence. In fact, despite Rippon's claim of 'stunning advances', no neural or genetic factor robust enough to aid diagnosis or predict treatment response has ever been found. Additionally, there are significant disadvantages to framing diagnostic labels as identities to be celebrated. The experiences described by many people now claiming to be autistic are better explained as consequences of the rootlessness and individualism that characterise everyday life today, the effects of what sociologists call 'victimhood cultures', the invidious influence of social media, and the contribution of abuse and other adverse experiences to distress of all forms. We do not need yet another way to individualise and commodify the grossly uneven impacts of these social pressures. Instead, we need to fundamentally transform our profoundly unequal society, dismantling the myths that make inequality appear John CrombyHonorary professor of mental health and psychology, University of Nottingham Have an opinion on anything you've read in the Guardian today? Please email us your letter and it will be considered for publication in our letters section.
The Guardian
21-07-2025
- Health
- The Guardian
Why the antagonism over the rise in autism diagnoses? It's actually good news
Soaring rates of diagnoses in various illnesses such as cancer and diabetes have stimulated a debate about whether medicine has an 'overdiagnosis' problem. The claim is that individuals may be prematurely diagnosed with conditions that, although meeting criteria for a disease, will never cause symptoms or death during a patient's lifetime. Discussions of this problem in the world of physical medicine have mainly been described as compassionate, arising from concerns that many so-called diagnoses might be unnecessary (does being pre-diabetic really mean you are ill?) or even harmful (the worried well being driven to seek needless and possibly damaging surgical interventions). Now that there are ever-more sensitive screening tests, and access to predictive genetic information, are doctors handing out too many unnecessary sicknotes? When attention turns to the possibility of overdiagnosis in the world of psychological medicine, however, the tone changes. Even those on the side of compassion display a greater level of cynicism, with subtle (or not so subtle) hints about unearned or pointless diagnoses. There is reference to 'diagnostic creep' and the 'medicalisation' of normal human variation. Mental illness has been described as just an inability to deal with ordinary distress and anxiety. Weighing in on the back of this are those with much more trenchant opinions. 'We've fetishised mental illness, so we all want it,' reads one recent headline, with the associated article describing a mental illness diagnosis as a 'sicknote from life'. Increases in diagnoses such as attention deficit hyperactivity disorder (ADHD) have been blamed on 'sharp-elbowed, middle-class parents' trying to avoid the blame for bad parenting, and the support for children with special education needs as an 'unaffordable racket', caused by a system that is 'patently easy to game'. Autism is clearly in the crosshairs, targeted because of the 787% increase in diagnoses between 1998 and 2018. What better evidence is there that there is too much diagnosing going on? Those worried about the rise rarely note that, in the 1980s, after a painstaking UK-based investigation of a large range of developmental disorders, there was a deliberate recalibration of autism's diagnostic criteria. This was because too many children in need of help were being missed by the then overly narrow definition of the condition. More recently, there has been an emerging awareness that even this more inclusive approach had missed large numbers of marginalised groups, especially women and girls. In conjunction with this, we are seeing a more sympathetic public awareness of autism, and how it presents. So this much-vilified increase is actually a long-needed correction of a longstanding bias, which had overlooked many in need of support. Discussions about overdiagnosis in physical medicine refer to the problem of unnecessarily pathologising mild, preclinical conditions. This is also being identified as a problem in the field of autism. In a strange throwback to the anti-psychiatry era of the 1960s and 1970s, the 'compassionate' voices urge against the damage caused by 'medicalising' or 'biologising' autism (even though it is clearly a brain-based, highly heritable condition). Apparently it could be harmful to tell people they are suffering from an incurable brain disorder. Indeed, couching an autism diagnosis in such inaccurately negative terms could well be harmful. Those who work in the autism field would not recognise (or tolerate) it. More widely, it sets aside the stunning advances made in the understanding of autism that have been achieved by those very biologisers, such as geneticists and neuroscientists, who have been criticised. Do we really want to go back to the time when the blame for autism was laid at the doors of emotionally cold 'refrigerator mothers'? In physical medicine, a diagnosis is an indication that there is indeed a recognisable physical problem, an abnormality that may be associated with pain and suffering, and that could require invasive treatment, if such is available. Altogether, a diagnosis is usually taken as bad news. The compassionate debaters point out that this could cause ongoing anxiety, ill-advised life choices and the adoption of a negative 'illness identity'. Paradoxically, there is clear evidence that, in the world of autism, a diagnosis can often be positively received. For parents who have been seeking explanations for their young child's difficulties, possibly for months if not years, a diagnosis of autism can offer a longed-for explanation, a gateway to knowledge and understanding, and the membership of a community that can offer help and support. For late-diagnosed adults, an autism diagnosis can come after decades of struggle, being ostracised and othered. 'At last my life makes sense' or 'I've finally found my tribe' are frequently reported as responses to an autism diagnosis. Many autistic individuals describe their diagnosis as a route map or an instruction manual. 'I'm no longer lost in the universe,' said the writer and broadcaster Robin Ince, after his diagnosis at the age of 52. A wave of powerful personal testimonies from late-diagnosed autistic women has been a key driver in the recent awareness of autism's missing females. The subtitle of Emily Katy's Girl Unmasked: How Uncovering My Autism Saved My Life could stand as a generic summary of of their stories. The memoir is an extraordinary account of a girl whose first 16 years were marred by anxiety and panic attacks, bullying and self-harm, whose lived experience drove her to several attempts at suicide. She described how an autism diagnosis instantly changed her life: 'I suddenly understood everything about my life with a new-found clarity for the very first time … there was an overwhelming relief at finally knowing.' Now trained as a mental health nurse, she shares her insights with others. In psychological medicine, it is claimed that widening the definition of atypical behaviour ('diagnostic creep') has resulted in over-generosity in handing out 'unearned' diagnoses. If you have a job, can drive a car, can make eye contact, then you aren't autistic enough. Anyone who has been through a full autism assessment (having perhaps already waited five years to get there) will attest to the lengthy, complex and rigorous procedures involved. It is not a perfect system – the problem of underdiagnosis has already been mentioned – but it is certainly not a system that can easily be 'gamed'. The concepts underpinning the claims of overdiagnosis in physical medicine do not play out well in the field of autism. The almost-ninefold increase in diagnosis of this condition should not be taken to reflect a worrying trend towards 'a culture of wide-eyed acceptance of mental health gobbledegook'. Rather, it should be celebrated as a sign of a civilised society recognising the struggles that some of its fellow citizens face and acknowledging their need for recognition and support. Indeed, it could be taken as a welcome outcome of initiatives to destigmatise all forms of mental illness. Perhaps most importantly, an autism diagnosis is almost universally seen as a gateway to understanding, of positive benefit to self-identity and self-esteem. This is not something that should be rationed or withheld. The overdiagnosis brigade, be they compassionate or outraged, seem to have misunderstood autism and its diagnosis. Autism is not a diagnostic fad but a reflection of human diversity and the world's need to accommodate it – denying that does far more harm than any so-called overdiagnosis ever could. Prof Gina Rippon is emeritus professor of cognitive neuroimaging at the Institute of Health and Neurodevelopment, Aston University, and the author of The Lost Girls of Autism and The Gendered Brain
