Majority of Adults with Autism Go Undiagnosed

Author: University of Leicester
Published: 2011/05/04 - Updated: 2025/02/28
Publication Details: Peer-Reviewed, Reports & Proceedings
Category Topic: Autism Information - Academic Publications

Page Content: Synopsis - Introduction - Main - Insights, Updates

Synopsis: This peer-reviewed article discusses a significant community survey conducted in England, revealing that many adults with autism or Asperger's syndrome are unaware of their condition. The study found that 9.8 per thousand adults meet the diagnostic criteria for autism spectrum disorder, with higher prevalence among males, individuals without higher educational qualifications, and those living in government-financed housing. Notably, none of the identified individuals had a prior diagnosis, highlighting a substantial gap in awareness and diagnosis among adults. The research suggests that the perceived increase in autism diagnoses is likely due to improved detection methods rather than a true rise in prevalence. These findings underscore the need for enhanced training for healthcare professionals to recognize and diagnose autism in adults, which could lead to better support and resources for this often overlooked population - Disabled World (DW).

Introduction

Not a single person identified with autism or Asperger's syndrome during a community survey in England actually knew they had the condition, research led by the University of Leicester reveals.

Main Content

According to Dr Traolach Brugha, Professor of Psychiatry at the University of Leicester, the research has already revealed that autism was commoner in males, those without higher educational qualifications, and those living in social (government financed) housing. Prevalence was not related to the age of those with the condition.

The findings emerge from the first ever general population survey of autism in adulthood. They are based on a two phase epidemiological survey in England (7,461 screening interviews; 618 diagnostic) carried out in 2007. The findings are now published fully in the world's leading peer refereed mental health scientific journal the Archives of General Psychiatry. This means that the survey carried out from Leicester is now internationally endorsed officially.

Dr Brugha, who is also a consultant psychiatrist working in the NHS with the Leicestershire Partnership NHS Trust, said none of the cases with autism found in the community survey throughout England knew that they were autistic or had received an official diagnosis of autism or Asperger syndrome.

Dr Brugha said the new scientific article confirms the already published report from the survey (2009) that 9.8 per thousand adults in England meet official diagnostic criteria for autism spectrum disorder. There was no evidence of an 'autism epidemic' of marked increase in people with the condition.

He said:

"Overall our findings suggest that prevalence is neither rising nor falling significantly over time. This favors the interpretation that methods of ascertainment (case finding) have changed in more recent surveys of children compared to the earliest surveys in which the rates reported were considerably lower".

In a comment on the possible causes of autism the researchers suggest that:

"The [non genetic or environmental] causes of autism appear to be temporally constant, and that recent apparent rises in rates of diagnosis must therefore reflect better case finding, rather than some new environmental toxin. However, we would urge caution and the need for independent replication of this first set of adult community survey findings".

Professor Brugha also drew attention to the newly reported finding that none of their cases of autism were already known to have the condition:

"It is very concerning that none of the cases we confirmed using rigorous diagnostic assessment methods in the community knew that they had the condition or had an official diagnosis. As in all community surveys it is of course likely that most of the cases we found were relatively mild and few were severe. We know that severe autism particularly when accompanied by learning disability is much more likely to be recognized. We are beginning to provide training to psychiatrists in the diagnosis of autism spectrum conditions in adulthood through the Royal College of Psychiatrists Education and Training Center, London."

The initial findings of the survey, which appeared first in 2009, attracted considerable media attention. The survey was carried out jointly with the National Center for Social Research and a team of methodological experts from collaborating Universities (University of Cambridge, UCL, and King's College, London). Further work extending the survey to adults in communal establishments and adults with Learning Disability has since been commissioned by the NHS Information for the Department of Health and is being carried out in collaboration with researchers at the Universities of Cambridge and Glasgow. The findings are expected to become available later in 2011.

The study was supported by the National Health Service Information Center for Health and Social Care and Department of Health; autism follow-up was supported by the National Institute for Health Research and Department of Health Policy Research Program.

Insights, Analysis, and Developments

The findings of this article underscore the pressing need for heightened awareness and a shift in how healthcare professionals approach autism diagnosis in adults. Given the rising recognition of autism in children, it's crucial that adults are not left behind in the process of identification and support. As this article reveals, there is a critical gap in recognizing autism in the adult population, which could significantly affect the well-being of many who remain unaware of their condition. While this article sheds light on the often-overlooked issue of undiagnosed autism in adults, it's crucial to remember that every individual's experience is unique. The journey to understanding oneself, whether through a formal diagnosis or personal reflection, is deeply personal and can be both challenging and rewarding. As society becomes more aware of neurodiversity, we must continue to create spaces where all individuals, regardless of their neurological differences, can thrive. By fostering understanding and acceptance, we can build a world that truly embraces the full spectrum of human experiences

Attribution/Source(s): This peer reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by University of Leicester and published on 2011/05/04, this content may have been edited for style, clarity, or brevity.