GP Dr Peter Bagshaw looks at potential overdiagnosis of this condition.
Background
Autism, also known as autism spectrum disorder (ASD) is a developmental disorder with symptoms that appear within the first three years of life. It is characterised by deficits in social communication and interaction, and restricted, repetitive behaviours, interests, or activities. Around 1 in 3 people with autism also have a learning disability.
Actual prevalence
The prevalence of an autism diagnosis has increased over the years. In 2000, around 1 in 150 children in the US were diagnosed with autism, increasing to 1 in 36 by 2020 with a 4:1 male to female ratio. Diagnosis rates have been rising globally, though there is very wide variation from country to country: in France and Portugal for instance the incidence is reported as around 0.7%, a tenth of the UK’s 7% incidence.
Issues around autism
Does this wide apparent variation in diagnostic rates with time, gender and country reflect underdiagnosis, a genuine difference in prevalence or societal attitudes? Like so much else in autism, and other developmental disorders such as ADHD and other conditions often labelled as neurodiversity, the facts are difficult to be sure about, and often the subject of significant controversy.
The medical model, for instance, sees autism as a disability (ICD classification talks of “persistent deficits”) whereas the autism rights movement describes autism as a result of ‘natural variations in the human brain rather than a disorder to be cured’. Although there is a genetic component, the exact cause of autism is unknown, as is the reason for the sex difference. There is no definitive diagnostic test for autism, so diagnosis is necessarily subjective. By definition, autism lies on a spectrum from normal (or neurotypical), to severe impairment, with variants including high-functioning savants or those with only sensory processing issues. Although there is an alphabet soup of functional tests available (ASQ, ADOS, STAT, ADI-R, PEDS, SQC) there is no single, standardised test.
Many of the characteristics listed as features of autism (temper tantrums, sensitivity to taste or smell, wishing to play alone) can be considered variations of normality or personality differences. The long delays for an NHS diagnosis for both adults and children in many parts of the country means that individuals, and parents struggling with their children’s behaviour, may turn to the many private or online diagnostic services, which may be felt to have a vested interest in diagnosing autism
Reasons for possible overdiagnosis
There are many factors which may make adults seek a diagnosis, and make parents keen to receive a diagnosis of autism (or other neurodevelopmental diagnoses) for their children:
- It explains behaviour which is otherwise difficult to understand. We know from other areas that an explanation for disease, even if mistaken, makes it easier to bear than not knowing.
- It takes away responsibility for difficult behaviour, both for the child the and parents. Most of us who have been parents will experience the frustration of our children’s behaviour, and the guilt of feeling we have failed: being able to blame a medical condition lifts this guilt.
- There are currently several high profile celebrities who have raised the profile of autism, as well as high social media support (Twitter/X has over 400 autism accounts listed), often placing autism in a positive light, and a large amount of traditional media, again often very positive: Amazon lists 11 books named ‘Autism is my Superpower’ or variants thereof.
- Although there is no medication which ‘cures’ autism, a diagnosis can give access to medication which can reduce the associated anxiety and behavioural issues, and talking therapies which can also help.
- A diagnosis can be helpful at work, with employers then required to make reasonable adjustments for the person with a diagnosis
- A diagnosis can also unlock access to an Educational, Health and Care Plan (EHCP) which allows schools to unlock additional support for pupils.
Conclusions
Although a diagnosis may be helpful for individuals and parents, there is concern in some quarters that the medical model may be unhelpful, as it takes away responsibility for actions. Is the pathologising of behavioural variations useful? In some cases, the diagnosis of autism is entirely appropriate, and can unlock support. However, sometimes it is best to look outside the medical model and apply needs-based solutions even if that can be more challenging both for us and our patients.
Dr Peter Bagshaw is a GP and NHS Somerset CCG mental health and dementia clinical lead
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