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Higher Number of Undiagnosed Autistic Individuals in England Revealed by Study

A recent study finds that the number of autistic individuals in England may be significantly higher than previously reported. The study suggests that between 150,000 and 500,000 adults aged 20 to 49, as well as between 250,000 and 600,000 individuals over the age of 50, may be autistic but undiagnosed. This places the total autistic population in England at over 1.2 million, nearly double the figure commonly cited by the government for the entire UK.

A recent study conducted by researchers from University College London (UCL) challenges the prevailing estimates of the autistic population in England, suggesting that the actual number may be significantly higher than previously reported. The findings, published in The Lancet Regional Health Europe, highlight the need for improved diagnosis and support for autistic individuals.

The researchers aimed to estimate the prevalence of undiagnosed autism among adults in England. They analyzed anonymized data from more than 5 million individuals registered at GP practices between 2000 and 2018 to compare the number of diagnosed cases with lower and upper estimates of autism prevalence.

The lower estimate was based on the widely accepted figure that approximately 1% of the population in England is autistic, derived from epidemiological research published in 2011. However, this figure was established before changes were made to the diagnostic criteria for autism, which broadened its scope.

To derive the upper estimate, the researchers examined rates of diagnosed autism in young people aged 10 to 19 within their dataset. This age group was selected because they are more likely to have had their autism recognized, as providers now possess a greater awareness of autism in young individuals.

The study’s estimates indicate that between 150,000 and 500,000 adults aged 20 to 49 may be autistic but undiagnosed, while between 250,000 and 600,000 individuals over the age of 50 may also be undiagnosed, constituting over 90% of all autistic individuals. The midpoint of these figures suggests that approximately 750,000 autistic adults aged 20 and above remain undiagnosed in England. Consequently, the total autistic population in England exceeds 1.2 million, approaching double the figure of 700,000 cited by the government for the entire UK.

In response to these findings, the researchers emphasize the urgent need for better access to diagnostic services for adults and improved support systems following diagnosis. They also call for increased acceptance and understanding of neurodiversity within society.

Lead researcher Elizabeth O’Nions, a post-doctoral researcher at UCL Psychology & Language Sciences, highlights the evolving understanding of autism, stating, “Historically, autism has been considered as a condition of childhood. But recently, awareness has been growing that it is present across the lifespan – in adults as well as young people. Nevertheless, autism is still under-recognized in adults. Our estimates suggest that about 180,000 people aged 20-plus had an autism diagnosis as of 2018, meaning that most autistic adults in England were undiagnosed.”

O’Nions further explains the significance of a diagnosis for autistic individuals, stating, “Having a diagnosis means that someone can advocate for their right to reasonable adjustments and the support they need. Recognizing that someone with an intellectual disability is autistic can also help people to understand and support them better.”

Autistic individuals may exhibit differences in social communication and interaction, as well as restricted and repetitive patterns of behavior, interests, and activities. Many of them require accommodations to ensure equal access to healthcare, employment, and local authority support.

However, the study also acknowledges certain limitations. The primary care records analyzed in the study were not directly linked to secondary care records, which means that some diagnoses may not have been represented. Additionally, the dataset did not cover all GP practices in England, preventing a detailed assessment of local variations in diagnostic rates.

The research was funded by Dunhill Medical Trust, Economic and Social Research Council, Medical Research Council, National Institute for Health and Care Research, Wellcome, and the Royal College of Psychiatrists.

Takeaway

  1. A study conducted by researchers from UCL suggests that the number of autistic individuals in England is likely to be more than double the previously reported figures. The research, published in The Lancet Regional Health Europe, focuses on estimating the prevalence of undiagnosed autism among adults in England.
  2. By analyzing anonymized data from over 5 million individuals registered at GP practices between 2000 and 2018, the researchers compared the number of diagnosed cases with lower and upper estimates of autism prevalence. The lower estimate, based on the widely accepted figure of 1% of the population, may be an underestimation due to changes in diagnostic criteria that made autism more inclusive. The upper estimate was derived from rates of diagnosed autism in young people within the dataset.
  3. The study suggests that between 150,000 and 500,000 adults aged 20 to 49 and between 250,000 and 600,000 individuals over the age of 50 may be autistic but undiagnosed in England. This indicates that the total autistic population in England is likely to exceed 1.2 million, approaching double the figure cited by the government for the entire UK.
  4. The researchers emphasize the need for better access to diagnostic services for adults and improved support systems following diagnosis. They also advocate for greater acceptance and understanding of neurodiversity in society. Having a diagnosis can help autistic individuals advocate for their rights to reasonable adjustments and support, and it can facilitate better understanding and support from others.



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