Startling Discoveries: England’s Autism Numbers Could Be Twice as High as Previously Assumed
Fresh research proposes that the actual count of individuals with autism in England might exceed the official statistic cited in national health policies. By using confidential data from English GP practices and contrasting diagnosed cases with estimated prevalence rates, researchers predict that around 750,000 adults aged 20 and above in England might be undiagnosed for autism. This brings the overall population of autistic individuals to over 1.2 million, a significant increase from the government’s reference of 700,000 for the entire UK. Researchers are advocating for improved access to diagnostic services, enhanced post-diagnosis support, and greater societal understanding of neurodiversity.
A recent study conducted by researchers from University College London suggests that the real number of individuals with autism in England could be more than twice the figure commonly mentioned in national health policy documents.
This pioneering research, published in The Lancet Regional Health Europe, aimed to assess the number of adults in England who could potentially have undiagnosed autism.
To achieve this, the researchers computed the count of people who had received a diagnosis of autism, using de-identified data from over 5 million individuals registered at GP practices in England between 2000 and 2018.
They then compared these figures with a lower estimate (around 1%) and an upper estimate (around 3%) of the actual prevalence of autism in the population. The lower estimate was derived from the often-cited statistic that about 1% of people in England are autistic. This statistic was based on research from 2011, before changes were made to the diagnostic criteria for autism to include a wider range of cases.
On the other hand, the upper estimate was based on the rates of diagnosed autism in young people (ages 10-19) within the researchers’ dataset. This is because younger individuals are more likely to have their autism recognized due to increased awareness among providers. The estimates from the research suggest that there might be between 150,000 and 500,000 undiagnosed autistic individuals aged 20 to 49, and between 250,000 and 600,000 undiagnosed autistic individuals over the age of 50 – which makes up more than 90% of all autistic individuals.
The midpoint of these estimates indicates approximately 750,000 undiagnosed autistic individuals aged 20 and above in England. This would increase the total autistic population to over 1.2 million – nearly double the government’s figure of 700,000 for the entire UK.
Now, the researchers are advocating for improved access to diagnostic services for adults, as well as better support after diagnosis. They also aim to promote greater acceptance and understanding of neurodiversity within society.
Lead researcher Elizabeth O’Nions, a post-doctoral researcher from UCL Psychology & Language Sciences, stated, “In the past, autism was primarily seen as a condition of childhood. However, awareness has been growing that it exists throughout one’s lifespan – among both adults and young people.”
She further mentioned, “Nevertheless, autism still often goes unrecognized in adults. Our estimates suggest that as of 2018, about 180,000 individuals aged 20 and above had been diagnosed with autism, indicating that a majority of autistic adults in England remain undiagnosed.”
“This has consequences since autistic individuals frequently face discrimination and exploitation within society. Their support needs might go unmet, even when they seem to be managing well in life.”
“Receiving a diagnosis allows individuals to advocate for their right to reasonable accommodations and the support they require. Recognizing that an individual with intellectual disabilities is also autistic can aid others in understanding and assisting them more effectively.”
Autistic individuals might display differences in social communication and interaction, along with repetitive behavioral patterns and interests.
Many autistic individuals require adjustments to be made to ensure equal access to healthcare, employment, and local authority support.
Dr. O’Nions added, “Our findings highlight a significant gap in diagnoses between adults and children or young people in terms of autism in England.”
“This gap might partly stem from a lack of awareness and comprehension of autism in adults within the healthcare field. Older adults might also be less inclined to identify themselves as autistic, which means they might not come to the attention of support services.”
“Meanwhile, service providers might hesitate to bring up the subject of autism due to uncertainties regarding diagnosis waiting times and the availability of support or specialized services post-diagnosis.”
Study Limitations
Primary care records aren’t directly linked to secondary care records, potentially resulting in some diagnoses not being included in the study.
Furthermore, the data doesn’t cover all GP practices in England, preventing a detailed mapping of regional variations in diagnostic rates.
Reference: “Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data” by Elizabeth O’Nions, Irene Petersen, Joshua E.J. Buckman, Rebecca Charlton, Claudia Cooper, Anne Corbett, Francesca Happé, Jill Manthorpe, Marcus Richards, Rob Saunders, Cathy Zanker, Will Mandy, and Joshua Stott, April 3, 2023, The Lancet Regional Health – Europe. DOI: 10.1016/j.lanepe.2023.100626
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.
Table of Contents
Frequently Asked Questions (FAQs) about Undiagnosed Autism
What does the study reveal about autism in England?
The study suggests that the actual number of autistic individuals in England could be more than double the officially reported figure. By comparing diagnosed cases to estimated prevalence rates, researchers estimate around 750,000 undiagnosed autistic adults in England.
How does the estimated number of autistic individuals compare to the official figure?
The study’s estimate of 1.2 million autistic individuals in England is significantly higher than the government’s cited figure of 700,000 for the entire UK, highlighting a potential underrecognition of autism cases.
What factors contribute to this underrecognition?
The research indicates that autism is often unrecognized in adults due to a lack of awareness and understanding among healthcare professionals. Older adults might also be less likely to self-identify as autistic, and service providers might be hesitant to raise the issue of autism.
Why is diagnosing autism important?
A diagnosis allows individuals to advocate for their rights to accommodations and support, which can be crucial in addressing unmet needs, discrimination, and exploitation faced by autistic individuals in society.
What does the study suggest for improving the situation?
The researchers advocate for better access to diagnostic services for adults, enhanced post-diagnosis support, and greater societal acceptance and understanding of neurodiversity.
What are the limitations of the study?
The study’s primary care records aren’t directly linked to secondary care records, potentially missing some diagnoses. The data also doesn’t cover all GP practices, limiting the ability to map local variations in diagnostic rates.
How was the study funded?
The research received funding from various sources including 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.
More about Undiagnosed Autism
- The Lancet Regional Health Europe
- University College London (UCL) Psychology & Language Sciences
- Epidemiological Research on Autism Prevalence
- Neurodiversity and Autism Acceptance
- Dunhill Medical Trust
- Economic and Social Research Council
- Medical Research Council
- National Institute for Health Research
- Wellcome
- Royal College of Psychiatrists
3 comments
wait a sec, they checked out piles of data from doctors and did some fancy calculations to figure out that lotsa people might be living with autism and not even know it? that’s some serious data crunchin’!
omg, so like, these scientists did some big brain math with loads of medical words, and now they’re like “hey, there might be waaay more folks with autism than we counted before!” who knew, huh?
so, like, they sayin’ that being autistic isn’t just a kid thing? it’s like, a lifelong deal? that’s sooo important, right? ’cause these peeps need support and stuff, ya know?