September 27, 2021

expert reaction to study on trends in autism diagnosis over the last 20 years

A study published in Journal of Child Psychology and Psychiatry looks at time trends in autism diagnosis in the UK over 20 years.

Tim Nicholls, Head of Policy, Public Affairs and Research Partnerships at the National Autistic Society said: 

“This study suggests that the increase in diagnosis over the last 20 years is likely driven by greater awareness of autism and better access to diagnosis. 

“We strongly believe this is in large part down to tireless campaigning by autistic people and their families to improve professional understanding – and also increased and more accurate representation of autism in TV, film and books. But it’s important to remember that we still need the public to understand more about autism and autistic people’s experiences. Autistic people routinely report feeling misunderstood, struggling without the right support or feeling judged and mocked. 

“A diagnosis can be life changing and is vital to getting the right care and support. But waiting times are still far too long in many parts of the country, with some children and adults waiting many months and even years. 

“The Government’s new all-age autism strategy for England commits to reduce diagnosis waiting times and to better post-diagnostic support. But to fulfil this promise, and really improve the lives of millions of people, the Government must properly fund future years of the strategy in the upcoming Spending Review. If you think you or your child may be autistic or are looking for information or guidance, visit autism.org.uk.” 

Prof Uta Frith FMedSci, Emeritus Professor of Cognitive Development, UCL Institute of Cognitive Neuroscience, University College London, said:

“This is an important study documenting the explosive jump in diagnoses of autism over the last two decades.

“It strongly suggests that the diagnosis of autism has been stretched to breaking point and has outgrown its purpose.

“If the purpose is to predict what an individual’s needs are, this is no longer possible.

“Researchers need to think hard about how to disentangle the underlying conditions in individuals now all labelled autistic.

“Without such an effort, research into the causes of autism will become meaningless.”

Dr James Cusack, Chief Executive of Autistica, an autism research charity, said:

“As the UK’s leading autism research charity, we’re always pleased to see new evidence on the prevalence of autism in the country.

“Women and girls have historically been more likely to be denied a diagnosis. The fact that we can see a steady increase in women and girls is positive.

“The most likely explanation for this increase in diagnoses is broader diagnostic criteria and better awareness and understanding of autism. There is no compelling evidence to suggest that we are seeing a “real” increase in the number of autistic people at the moment or that there is anything that could be driving that increase.

“We must now make sure that services for autistic people grow at the same rate as diagnoses. The system should not abandon autistic people, and every autistic person must get the right support from day one.”

‘Time trends in autism diagnosis over 20 years: a UK population-based cohort study’ by Ginny Russell et al. was be published in Journal of Child Psychology and Psychiatry.

DOI: https://doi.org/10.1111/jcpp.13505

Declared interests

None received.