Number of Autism Patients in England Could Be Twice as High as Previously Thought
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Number of Autism Patients in England Could Be Twice as High as Previously Thought.
A recent study conducted by researchers at University College London suggests that the actual number of autism patients in England could be more than twice the figures typically cited in national healthcare policy documents.
This groundbreaking study, published in The Lancet Regional Health Europe, aimed to estimate the number of undiagnosed autism cases among adults in England.
To achieve this, researchers analyzed anonymous data from over 5 million individuals registered at general practitioner clinics in England between 2000 and 2018 to calculate the number of people diagnosed with autism.
They then compared these figures with lower (around 1%) and higher (around 3%) estimates of the actual prevalence of autism in the population. The lower estimate was based on widely circulated figures indicating that around 1% of the population in England has autism. This data was derived from an epidemiological study published in 2011 when autism diagnostic criteria had not yet changed, making it more inclusive.
Meanwhile, the upper estimate was based on the diagnosis rates of autism in adolescents (ages 10-19) within the researchers’ dataset. This is because modern healthcare providers have a high awareness of autism in teenagers, making it more likely for autism in this age group to be diagnosed.
The research team estimated that between 150,000 and 500,000 individuals aged 20 to 49 may have autism but remain undiagnosed, and between 250,000 and 600,000 individuals aged 50 and above may also be undiagnosed, accounting for over 90% of all autism cases.
The midpoint of these figures translates to approximately 750,000 undiagnosed autism patients aged 20 and above in England. This brings the total number of autism patients to over 1.2 million, nearly twice the 700,000 figure reported by the UK government.
Researchers are now calling for improved diagnostic services for adults and better support post-diagnosis. They also hope to encourage greater societal acceptance and understanding of neurodiversity.
Dr. Elizabeth O’Nions, the lead researcher and postdoctoral researcher in the Department of Psychology and Language Sciences at University College London, stated, “Autism has long been seen as a childhood condition. However, there is growing recognition that autism spans the entire lifespan – from childhood through adulthood and beyond. Nevertheless, autism in adults remains poorly understood. Our estimates suggest that by 2018, approximately 180,000 adults aged 20 and above had been diagnosed with autism, meaning the majority of adults with autism in England remain undiagnosed.”
“This is important because autism individuals often face discrimination and exploitation in society. They may have unmet support needs even if they appear to cope with life. Diagnosis means someone can advocate for their right to reasonable adjustments and the support they need. Recognizing that individuals with intellectual disabilities are also autism patients contributes to a better understanding and support for them.”
Autism patients may exhibit differences in social communication and interaction, as well as limitations and repetitions in behaviors, interests, and activity patterns. Many autism patients require accommodations to ensure they have equal access to healthcare, employment, and support from local authorities.
Dr. O’Nions added, “Our research findings indicate a significant disparity in autism diagnosis between adults and children and adolescents in England.”
“This may partly reflect a lack of awareness and understanding of adult autism among healthcare professionals. Older individuals are also less likely to self-identify as autism patients, which means they may not come to the attention of healthcare services.
Additionally, due to uncertainty about waiting times for diagnosis and whether support or specialist services will be available post-diagnosis, healthcare providers may hesitate to broach the topic of autism.”
Limitations of the study include the lack of direct linkage between primary healthcare records and secondary healthcare records, potentially leading to some undiagnosed cases not being reflected in the study.
Moreover, the data does not cover all general practitioners in the UK, making it impossible to draw refined regional variations in diagnosis rates.
(source:internet, reference only)
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