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Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data

Deleted user
over 1 year ago

There are some really interesting findings in this Lancet study.

I think my brain is fried so I will just leave the link here for others to read and comment on if you have a less fried brain than mine:

https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5/fulltext

  • over 1 year ago in reply to Martin

    Plus, many with Mental Health issues were misdiagnosed; as it overlaps with Autism.

    Not to mention the unmentionable.

  • over 1 year ago in reply to Martin

    Or like me, help a former partner/friend to obtain a diagnosis (including a lot of research), over a 20 year period, not realising I was also autistic.

    Doh.

  • over 1 year ago in reply to Deleted user

    There must be many adults who, like I had, have no idea how autism can present in real life. The media's focus on children and their distorted projections of adult autism undoubtedly result in many autistic people thinking, "Well that's nothing like me." 

  • over 1 year ago

    Some findings:

    'Interpretation

    Substantial age-related differences in the proportions of people diagnosed suggest an urgent need to improve access to adult autism diagnostic services'.
    'This study is the first to estimate underdiagnosis of autism using data from English primary care for more than 5 million individuals, a critical question given the key role of diagnosis in providing health and social services to autistic people. We are the first to provide upper and lower bound projected estimates of autism underdiagnosis in England, and to establish how these vary according to key demographic and clinical indices. Applying estimates of true prevalence derived from community case-finding studies and the highest rate of diagnosed autism in any age-band in this dataset, we found evidence suggesting high levels of underdiagnosis, particularly in older age groups. We estimate that between 150,000 and 500,000 people aged 20–49 years, and between 250,000 and 600,000 people aged 50+ in England may be autistic but undiagnosed.'
    'Estimating underdiagnosis in autistic people
    Out of a population of 56.5 million; we estimate that 463,500 (0.82% of the population) have been diagnosed autistic, and between 435,700 and 1,197,300 (58.63–72.11% of autistic people; 0.77%–2.12% of the English population) may be autistic but undiagnosed as of 2018 (see eTables S12–S14).
     d
    Fig. 2 provides estimates of numbers of diagnosed autistic people and lower- and upper-bound figures for true prevalence based on our projections. We estimate that between c. 152,900 and 489,900 people aged 20–49 years (52.47–75.47% of autistic people) and between 251,100 and 591,600 people aged 50+ (92.11–96.48% of autistic people) may be autistic but undiagnosed.'

    'Discussion

    The present study is the first to our knowledge to examine age-related inequalities in autism diagnoses affecting adults in England. Adults aged 20–49 years and those aged 50+ were less likely to have been diagnosed compared to people aged <20 years. Our exploratory projections suggest that 152,900 to 489,900 people aged 20–49 years, and 251,100–591,600 people aged 50+ in England may be autistic but undiagnosed. The midpoint of these estimates is approximately 750,000 undiagnosed autistic people aged 20 and above. These projections suggest that the total autistic population in England could be over 1.2 million; nearly twice the widely-cited figure of 700,000 given for the entirety of the UK.
    23
    By our projected estimates, only 3.5–7.9% of autistic people aged 50+ have a diagnosis. Even assuming a very conservative estimate of true autism prevalence of c. 1%, this means that more than nine out of 10 autistic over-50s are undiagnosed. This highlights the imperative to improve access to adult autism diagnostic assessments so that lack of a diagnosis does not impede access to services.
    These findings indicate that there remains a substantial diagnostic gap in adults compared to children and young people in England.'
    'Whilst addressing underdiagnosis of autism is key to reducing health inequalities, it is not sufficient without other policy initiatives, including better post-diagnostic support, upskilling of providers, and a national public information campaign to “shift the attitude and behaviour of millions of people” towards better understanding of autism and inclusion of autistic people.
    43
    p.7 These initiatives are of paramount importance to ensure that having a diagnosis is of meaningful benefit for autistic people'.